one moment one life

Dork Alert!

2013-04-05T11:29:00.000-05:00

So, this is how life is...

There's something to be said about lupus fog...and the effects of multiple mind "affecting" medications. One of those somethings is that you can't remember anything. Or at least, anything you want to remember. So, here's a little story about my life.

About a year ago, during the height of my blogging, I was finding myself becoming involved with a number of what I would call, "professionals". People who have successfully written books and are now professional writers/bloggers. This is pretty much ego candy. Especially when you are housebound and no longer in the career world you loved so dearly. It feels good to be socializing with the bigwigs. I had found a new purpose in life.

During this ego frenzy I was having issue with one particular writer/blogger women. For whatever reason, I got the feeling like we were competing. And then the ultimate happened. She had written something that I felt very passionate and knowledgeable about. I spent a significant amount of time composing and re-composing a comment to this particular blog post. As I hit the "post" button I felt really "psyched" about what I had written. So much so that for the next couple of days I obsessively and compulsively checked her blog to see if she had reviewed my comment and written her response to it. In my head it went something like this,

"Dearest Theresa (of course, she would call me by name, unlike all the other anonymous, canned responses to other less educated responders).
Your comments have "resonated deeply within me" (this is a big one in the blog world) and I find myself changed forever by your words...."

You get the picture.

Day one passed, no response. Day two, day three, and so on. And then I started to notice that people that had written days after me had been reviewed and made public for all the world to see. Yes, she had decided, for whatever obviously mistaken reason, to not "allow" my comment to be viewed.

Of course, I did not save a copy of my response to her (why, that would be extremely vain), so I went over and over in my mind what could have possibly disagreed with her. Had I been too cynical? Was I over emotional? Had I rambled on and appeared too self-edifying? I had I written too late at night and said something totally incomprehensible? Was my response so brilliant that she somehow felt threatened by me? Or was I so beneath her that it would have been too embarrassing for her to allow it to be seen? And on, and on, and on my brain went. Until my stories became so painful that I Unliked her professional page on facebook, Unfriended her personal page and took her blog off my Google Reader. So there!

I decided, out of sight, out of mind. And I moved on.

Until today. Months and months and months later.

For some reason one of her posts showed up on my facebook feed. And it was really good. Before I read it (it was a link that directed me to her blog) I had an ever so brief quiver of "hey, I don't like this lady" but clicked anyway. And it was excellent. Just like before the separation (yes, I'm pretty sure that out of her 68K fan base she missed me terribly) I was completely moved by what she had to say. Poignant and beautiful. Straight to my heart....yes, it resonated deeply. I fell in love with her all over again.

And now for the kicker. I have no idea, no recollection, no memory whatsoever of any details other than I know I got my feelings hurt. None at all. Nada. Zip. Zero. I'm a blank slate.

So, I find this interesting (actually a little hilarious) on two levels. One, this is indeed one of the perks to having a severe case of lupus fog. I feel no pain. Two, what a great lesson to be learned here. Oh, how we create our own suffering! For all I know, she simply forgot to review mine. Or I somehow missed it. Or her computer crashed and she lost a few responses to the great black Internet void. Who knows?!?! Definitely NOT ME! Yet, look at all that I put myself through. Let me tell you, I went through ego hell for days on end. I practically felt like I had lost everything and was doomed to become a mush-mind, thrown into the depths of the forever unimportant and unproductive. It was harsh. And yet, here I am, back in love with this amazing writer, this beautiful women with whom I find I have a deep connection with on so many levels. Poof! Just like that.

The moral of the story is this: Don't let it take 365 days. We have the choice right in this very moment to wipe it from our slate. Poof! It's gone. Just like that. Because almost always, we don't know. And even if we do know, 100%, beyond the shadow of a doubt KNOW... we still have the choice to let it go and continue on loving.

It's our choice. Period.

Today, I choose love. How about you?

What Are YOU Holding On To?

2013-04-04T12:14:00.000-05:00

Me, freezing in Florida this past week!

If I had to pick my favorite part of the day, it would almost always be morning. Even though I wake up with the usual myriad of aches and pains of someone with multiple autoimmune diseases, I still find this part of my day to be the best.

Of the the things I like most, like the feel of a fresh new start or the knowledge that in an hour or two I will be in the easiest part of my day physically, I would have to say that my morning coffee is the pinnacle of my a.m. routine. I love everything about it. I love the smell of a pot brewing as I lay tucked into my favorite soft blankets. I love the methodical movements as I reach for the cup, set it on the counter, lift the pot out from the maker and pour it into my carefully selected mug for the day (I have a collection of mugs made by an 80 year old potter I dearly love...the potter and the pot). I love the smell and the steam as I move the mug towards my mouth. I always let it linger there, just a moment, before I give it that first test sip of the morning. Slowly, always slowly, as to not burn my lips or the tip of my tongue, I tempt my senses, just for a moment. And then the full rich taste of coffee. Nothing tastes like the first sip. In fact, if left to "sip amok", I find that by the sixth or seventh cup the taste has progressively gotten less satisfying. Funny how one will continue to drink something that no longer tastes good merely out of habit. And then there is the warmth. The soothing warmth as it moves from mouth, to throat, to esophagus, to belly. Ummm...the warmth of coffee in my belly. Nothing like it.

The world moves slow as I sit at my counter and drink that first cup. It moves slow and easy and I cherish the stretched out tick of our old kitchen clock.

In the realm of letting go...

There are things I have had to let go of in this life. There are things I have chosen to let go of in this life. And then there is everything else in between. The stuff that lingers. I don't think I can say that one or the other is any more or less difficult, in fact, it's definitely relative. But the stuff that lingers can be particularly and chronically painful. For example, I know I shouldn't drink coffee. I've been told this by every doctor that I have. Yet, as I sit here typing these words, a cold cup-o-joe sits directly to my right on a silver dollar coaster brought back as a souvenir from a vacation out east over thirty years ago. Every day a little battle goes on in my brain. Every day the health conscientious, rational Theresa waves her little white flag of surrender as the caffeine addicted, habit mongering fly by the seat of her pants Theresa does the little Starbucks happy dance of victory. We'll, there's always tomorrow.

I heard a quote the other day by a guy I can't remember. Oh, I could go look it up, but today I am just typing freely. I'm not really working at it, and going to my iPad and finding out the name of the guy who gave the last Dharma talk would definitely be considered "work" for me today. Getting up, walking to the living room, opening the iPad...need I say more? Anyway, the quote was this...

"We hold on to things that we think are gonna 'do it' for us."

You know, the stuff that we think makes us happy...finally. This is usually the stuff that makes us skinny, creates well adjusted kids, gives us the perfect job, makes us healthier, solves our financial woes, mends broken relationships, keeps us awake, answers all our spiritual questions, makes our parents finally understand us, numbs our senses and bestows on us a blessed cloak of eternal peace. You know the stuff. It's the stuff we obsess about in our minds. It's white noise. It's mindless....or mindFULL chatter. It's the story we tell ourselves day in and day out, without even realizing it. It just plays quietly on and on and on. These things we refuse to let go of because we think they're helping.

And maybe, like my coffee, it is...temporarily. My coffee does wake me up. It does put me in a good mood. It does make me happy - in my ever fleeting breath of a moment. But the bigger picture says differently. The bigger picture reflects a huge energy and emotional drop in about an hour, and then maybe some irregular heart beats, and then maybe some especially swollen joints, and then a headache....

Yet, we hold on. Why? What are you holding on to? And why are you holding on to it? Why am I?

For me it's about fear. It's about being uncomfortable. Feeling shaky and groundless. A little personal note here about myself. I can't sit still for very long. (yes, that might have something to do with eight cups of coffee) I'm working on it, believe me. Me and two very good therapists, along with the help of countless others who come to me by book, or CD, or ancient text, or podcast. I can't sit still for long and I feel the intense urge to fill space up. I fill it up with thought, or writing, or picking at hangnails, or eating, or cleaning, or reading, or whatever. I just fill it up. It's why meditation is still work for me. (I refuse to give up though! I believe the sages to be true...along with all the well founded scientific research!) It's painful, and not just because of my joints! I get uneasy in empty space.

So I fill myself up. I fill my space up. In a sense, I try to make myself FULL of what I think is "gonna do it for me". And this stuff can be pretty sneaky, disguising itself as spirituality or even mindfulness. In my effort to "let go" of self, I simply put on the cloak of the moment. Today I am blissfully mindful...so much so that I need to rush to my computer to write and tell you about it! Get it? Anything but just sit and experience it.

This is the thing...

A lovely picture taken by my husband of the gulf shore.

Let go. Period. If we have to say it to ourselves a thousand times a day in order to let go of just one thing, then it's worth the work. Life is meant to be lived, not thought. Filling ourselves and our space might give us a sense of temporary safety, but in the end it just makes us a big solid mess. Thinking way too much and missing life in the meantime. When we allow ourselves to be open - to stop the chatter - we become translucent. We allow ourselves to be open and curious, trusting in the moment instead of hiding within our past experiences or in what we think the future holds for us to make us happy. Give up those old and frightened parts for something new and fearless. Loosen up a bit and see that this life is a vast ocean. And guess what. We float! Learn to trust and we will all find that it's a wonderful ride. I truly, truly believe this.

So you ask, how much do we "let go"? We can't very well walk around in life letting go of everything. There are things that need to be thought about and things that need to be done, bills that need to be paid. If you're anything like me, you try to pin down the details because the vague is...well, painful. We want to know the right mix. How much can we let go before we are considered down right irresponsible? It makes me think of this cute little story I heard one time about a question that was posed to a wise old monk. His student asked him one day, "How much of the self is needed?" to which the monk replied, "Enough to get out of the way of a bus." Believe me, when the time comes, you will know what to do! Making decisions based on the reality of the moment is the best way to care for your future.

We don't need to pin it down my friend. You and I are beautifully and wonderfully made, intelligent beyond our imagination. Letting go and revealing what really resides within you will only make you better. For within you and within me lies the Kingdom of Heaven. All we ever need. No need to fill or cover or boost anything up. In fact, we only need to let go.

Can you trust that you are good enough "as is"? Because you know what? "As is" is as good as it gets. Anything more is less.

I wish I could end this with some grand proclamation in regards to my future caffeine intake. I'm working on it. I'm working on a lot of things these days. What I can promise you is this - that every day I will let go of something - if you will too. It may be the same thing over and over and over again in the same day. And that's perfectly okay. It's not so much about the arriving as it is about the journey anyway.

Oh, to be transparent
I shall feel
unconcealed
and
vulnerable

Yet
in my nakedness
the
light
finds its way
through

Blessing
me
and
touching
you

I find
it is worth
the
chill

The
letting go
of
this
solid self
to join the
river
as she
moves freely
to
the
ocean

Holy, holy, holy
is
her
song.

Peace to you,

Bulbs and Blank Slates

2013-01-24T14:09:00.002-06:00

"In the depth of winter I finally learned that there within me lay an invincible summer."

~ Albert Camus

These bulbs were given to my husband in a small paper sack this Christmas by a co-worker. In the bag was also a small note giving instructions as to how to get the bulbs to grow. It simply said to place them in water, support with sand or stones, water and wait. In four to six weeks we should get a preview of Spring. So I did exactly that. I found some of my favorite rocks (I collect rocks) and placed them in a bowl, tucked the bulbs in, filled it with water and put it up on the window sill in our bathroom.

Life amazes me.

I've been a bit absent from the on-line world as of late. I apologize for those of you waiting to hear how Oliver is or how Anna is or even how I am, for that matter. I forget sometimes, that the words I write are actually read by others and not just some sort of therapy for me. You remind me with your comments, honest and real. Sometimes painfully so. I am always surprised and humbled by your truth. But the fact of this matter of this absence is that it's been quite deliberate. Per the instruction of my neuro-psychiatrist, I am to live life a bit more experiential and not so much "up in my head". As someone who thrives on knowledge and strives daily toward self awareness and enlightenment, I have to admit, I can get caught up in the "idea" of it all. The bookshelf full of unread books on philosophy and mindfulness, or "books in waiting" as I like to call them, is a reminder of this "issue" of mine! I have always felt a great desire to "know". But as I am learning, to know something is quite different than what it means to feel something. And in order for our bodies to have the ability to go somewhere, it must have in it somewhere the capacity to feel that place. To have memory of it. I can know what it means to be at peace. I can know what it means to be relaxed. I can know what it means to meditate. I can know what it means to let go. But actually moving from that knowing to the experience of feeling is something that takes time and effort - and stillness.

The problem for me arises when my brain does not work. Which, with lupus, happens quite often. When I am unable to rely on coping mechanisms that have helped me in the past - thought process that help me when I am in pain, or sad, or depressed - I find it difficult to arrive at a place of comfort (peace, relaxation,calm) physically. So the idea here is to get there more often, without so much thought, so that when crisis arises it is not such a difficult place to find. As my wonderful neuro-psychiatrist Shep says, to find it in two breaths - this is my goal. SO....not so much reading and writing and a little bit more living.

Bedside table with iPad and headphones. My sanctuary!

The first and most important thing I have been doing in my day is to listen to the most recent recording of my hypnosis session with Shep. This was a difficult thing for me to remember to do, until he actually put it in the recording for me to remember to listen to the recording! It's been a life changer for me. I am so very fortunate to have a skilled team at the U of M pain clinic on my side. I just don't know what I would do without them. I also have a wonderful collection of mindfulness based healing talks and music - all helpful with the every day of chronic illness. To experience what it means to feel relaxed.

Homemade gluten-free pizza...YUM!

I have also been trying to eat more healthy, especially in light of the issues I have with gluten and other food ingredients that cause havoc in my system. Paying more attention to ingredients both when eating out as well as when in the grocery story creates not only a healthier diet, but a more pleasant eating experience. To experience what it means to feel comfortably full.

A beautiful red infant cap in the making.

Recently I had to co-create my treatment plan with my team. One of the goals I had for myself was to work on not defining myself as a sick person. I thought I was doing pretty good at this, but the more I looked at myself, my actions were speaking louder than my words. In fact, my oldest daughter recently called me on this when I was throwing out one of my, "Oh, I'm sick and old" comments and she said that no matter how many times I said that, I was not "sick and old". Ouch. But she's right. I am. Period. I simply am. And it's about time I start experiencing what I so often talk about on these very pages. Every time my doctor asks me how my painting is going, I come back with some excuse about my hands not working and my eyes being bad and my mind not focusing. Who IS this person? Well, this person has now learned how to crochet infant caps and if I can get one or two done, I plan on donating them to charity. Do my fingers and eyes always work? Nope. Do I care? Nope. To experience what it means to feel creative.

Tabula rasa...

It's funny how things happen in life. The day that I created that treatment plan was a good day for me, in many regards. For starters, I was able to drive myself to my appointment. Not only does it take a good day for that to happen, it takes a number of consecutive good days for me to feel confident enough to venture behind the wheel of a car. This day I had the confidence and so I set out alone. The appointment went well. I knew we would be working on the plan so I had put some thought into it ahead of time. The effort paid off and I felt really good about where I was headed.

On my drive home I realized that I would be passing by my favorite art supply store. I can't remember the last time I went to this store alone. It's been a long time. Plus, moving off the beaten path meant possibly getting confused and losing my way. The exit approached and I took it. I just took it. I had no idea why, I had no plan for any projects and definitely nothing in the works, but it just felt right. I walked up to the door and read, "ALL CANVASES 50% OFF"! I walked in, randomly selected seven canvases, paid for them, and walked back out to my car. As I drove home on that sunny day I had the most wonderful feeling of anticipation, of potential, of possibility.

Oh, I would be remiss if I didn't end up in my head at some point in this note to you. I promise not to stay there long. But as I sat looking at the above photo, trying to think of how to caption it, I just kept hearing the words "blank slate". Drawing from the education recesses of my mind, I tried to remember the theory behind the words. "Blank slate" or "Tabula rasa" is one of those phrases you never forget. Now, almost thirty years later, I wonder a little deeper. Tabula rasa is the epistemological theory (theory about how we attain knowledge) that maintains that people are born without any mental "content" and that their knowledge comes from the perception of their experience. So, in essence, at birth our minds are a blank slate and our sensory experiences become our rules for processing data, or our knowledge. Hum....

I think that bulbs and canvases and I have a little bit in common. That's what I believe this part of the journey is about. Allowing myself permission to be that blank slate in order to experience that which I so long to know - the emptiness of letting go. The release of not holding on. The experience of peace on a sensory level that can only be known by having been there before, physically. And this can only happen by repeatedly putting myself in a place where this is possible. Not somewhere up in my head. Not in a book. Not in words on a computer screen, but in experience.

I can't help but wonder what will end up on those canvases. Just like I wondered about those two small bulbs in that small brown paper bag. Just like I wonder about me. I think that Camus was right, as I find him in most cases to be.

"In the depth of winter I finally learned that there lay within me an invincible summer."

Peace,

Oh, and Anna is doing fantastic! A few bumps in the road, a little more pain than any of us had anticipated, but she is recovering well and back at working her two jobs. She continues to wow us all.

Oliver healed up just like new! After clearing him with the vet, we decided that it might be best if we find a home where Oliver could get a little more one on one. So we found a simply fantastic no-kill shelter called Caring for Cats and Oliver has officially been named Olivia and is awaiting adoption. We are very excited to think of the wonderful life this beautiful kitty will have.

Life truly does amaze me.

I Am Not Broken

2012-12-24T10:37:00.001-06:00

Anna and me, moments before her surgery.

It's been seven years since I have been in church for Christmas.

I did not grow up in a religious family. In fact, my parents did not go to church. I was baptized Catholic and that was about as far as it went. Around the age of twelve, I began to feel what I later regarded as a "calling" to Christianity. My earliest memory was that of finding a leaflet in the dentist office that had a telephone number where children could call and listen to bible stories. And if you stayed on the line after the story was finished, you could talk to a Sister about any questions you have or concerns about your "life"...whatever those may be at the age of twelve. I had a lot of questions...and a lot of concerns. What those were is another story, but my life up to that point had already held it's share of loss and sadness - my innocence being one.

At twelve I was walking across the street by myself to attend the Lutheran church on the corner and by the age of 16 I had found my way to a country Church of Christ and sealed the deal with a second baptism. I also met the man I would eventually marry. A local Minnesota Bible College student who was preparing for a life of ministry. We dated until I graduated from High School and were married that very summer. We raised five daughters and ministered in Lutheran churches in Michigan, Nebraska, Southwest Minnesota and Wisconsin. The year before our divorce, after twenty-two years of marriage, was the last time I attended Christmas services. I can count on one hand the number of times I have step foot in a church, period.

The service my husband and I attended this past Saturday was good. It was a good service and it was good for me. It was in one of those mega-churches. The kind with gift kiosks and coffee shops. The 18,000 member kind. It's the second time I have been in one. The first time was for more of a production/show and I went there with my mother and a group of Red Hat Ladies. This time was for an actual Christmas church service, with offering, and hymns, and a sermon. Without going into a lot of detail, let it suffice to say that for this service I was at peace. Not that my struggles did not come to mind - but I was in a good place and that place was peace-filled. It's not a traditional place, it's not even what many may find as a conventional place, but it is a place of wholeness, a place of rest and a place of profound spirituality. A place of Creator and created.

At one point in the service, during one of the large screen presentations, a phrase went across the screen and it read, "We are all broken."

We are all broken.

I know where this comes from. I have lived my life of religious dogma. I know the ropes, from beginning to end. I've walked the walk, talked the talk and tried to intertwine black and white into a humanity of grey. I've been saved. Twice, I guess. So my background is deep. Full of good, don't get me wrong. But I do not come from a place of brokenness, nor do I hold the conviction that we are all broken.

This past week my daughter Anna had major jaw reconstruction surgery. We knew it would be a big deal, but seven hours in the OR and almost one blood transfusion later, we had no idea how big. Neither did the surgeon. Moments before they whisked her away he reassured us that after three mock surgeries on plaster molds of her face they were sure they knew the extent of what needed to be done. About four hours into the surgery he called me from the operating room, "I'm sorry Mrs. Johnson, but things are not going as we had planned and it looks like we are going to have to do the lower jaw as well. It will be another three to four hours of surgery. Do we have your permission to proceed?" I told him of course he did, hung up the phone and wept.

In the end, the surgery went well. She spent two days in ICU and was released to our home, where we will care for her over the next two months. The extent of the surgery is beyond what you could ever imagine possible on the human face. Because she is unable to tolerate narcotics she is managing through excruciating pain, swelling and numbness. She is unable to move or control most of her face. I was somewhat prepared for the issue of pain as I know her of her intolerance to pain medication. What I was not ready for was the devastating emotional toll this would take on my nineteen year old daughter. The comment from her upon looking in the bathroom mirror, "Look at me, I'm fucking disgusting!" mumbled through spit and blood, will haunt my mother's heart for as long as I live.

We are all broken.

Like I said before, I know where this comes from. No need to explain the theology to me. I was a bible college student and a pastor's wife for too many years to have missed this one. But if there is anything I could do over in my life it would be this - I would ingrain into the hearts of my children at every moment, at every bedtime prayer, at every bible study, at every meal, at every teen-age teary eyed night-time tucking in, at the end of every boyfriend, at the heart of every mistake and every tragedy - that they are NOT broken. They WERE NEVER broken. That the Creator, whoever and whatever that may be to you or me, is incapable of creating brokenness. We are what and who and how we are to be in this very moment in our life. Period. To fight or not accept this fact has only one end, and that is suffering. How can we be anything other than what we are? This is a fight against reality we will never win. I would tell them that there is nothing about them that needs to be "saved". I would tell them that all that resides in creation and Creator resides within them. I would tell them that in the depths of their despair and fear that they are powerful, and whole and that all that they need in this life resides within the miracle that they are. That yes, we do need others in our lives. We need doctors and therapists and pastors and friends and family... but these people do not make us whole. They simply bring us back to what has always been there to begin with. They bring us back to ourselves. And this is anything but disgusting. This is anything but broken.

I spent a lifetime thinking that I was in need of being saved. I spent a lifetime looking in the mirror and believing that what stood before me was not good enough. I spent a lifetime correlating my pain with having "fallen away", believing that if I was more faithful, I was somehow a better human being, I was closer to whole, I would know peace. I would reserve my spot in the mansion.

These days, I don't live my life in the black and white. I live in the grey. I am totally okay with not knowing most things in this world. I believe in something bigger than me - Creator, Universe, God, Father...I don't have to put a name to it. Neither do I need to judge, justify or kill for my belief. And I simply don't get those who do. But this is the deal, we are not broken. I am not broken. You are not broken. In the midst of of your despair, you sorrow, your discouragement, your fear, your failure, your hopelessness, your desperation...

You are NOT broken.

You may have made a mistake, you may be depressed, you may be feeling angry, you may be lost, you may be mean and bitter, you may have lost your legs or fallen sick to a life threatening chronic illness...you may be a lot of things, but you are not broken. You are beautiful, and powerful, and a miracle of creation. Fully existing as all of the Universe would have you to exist. Just as you are. And if you can only learn to love, truly love who you see in the mirror and the moment you are in, you will find your way back to yourself. You will find peace. And in that peace you will find the true miracle of Christmas.

You will find love.

Peace,

When The Pain Is Yours

2012-11-26T14:41:00.000-06:00

Oliver

I don't like going to the vet...I never have. Today was no different.

This is Oliver. Oliver showed up on our deck sometime in September, or maybe it was August, I'm not really sure. It was sometime near the end of the summer because we were already trying to come to some decision as to what to do with her if she was still "hanging around" when the weather turned cold. She never left.

Yes, Oliver is a she. We found this out a little over two weeks ago when we had to take her to the vet. We had somehow gracefully slid into the understanding that she was here to stay. And now she was sick. Or so it seemed. Excessive drinking and salivating led us to suspect she had some sort of kidney issue. Two hundred and fifty dollars later we were assured she was just a thirsty, salivating, perfectly healthy two year old female cat. I had exceeded my pet budget for the month, so booster shots and spaying would come later.

I have to admit, this was not a real popular idea with myself nor my husband. Two dogs and a cat already seem overly sufficient. Adding another pet, that will most likely be with us for the next 13 years, was not the direction we wanted to be heading pet-wise. But it's a difficult spot to be in. You don't euthanize an animal that just seems sick. So you figure out the most inexpensive way to find out what might be wrong and go from there. Getting the "all okay" meant bringing the cat back home. I think it was at that point that I let Oliver into my heart.

Two weeks passed and mental adjustments had been made by all. Oliver was officially part of the Johnson/Buresh clan. Which truly was not much of an inconvenience to our daily activities because Oliver prefers to be outside. Out of 24 hours, I would guess that Oliver maybe spends 4 of those indoors. The rest are spent stalking and hunting the various mice and birds that frequent our bird feeders and surrounding woods. A real hunter, she's quite the antithesis to our Jeni, who prefers longs naps in the sun and full bowls of Indoor Formula Cat Chow.

The middle of last week, after spending a full day out and about, Oliver came in holding her front leg up. Unable to put any pressure on it, she hobbled to her usual spot in the spare bedroom and stayed in for the night. Three days later both legs on one side were not working properly. Four days later she walked in a completely arched back position and meowed in pain as she moved. This weekend she could barely crawl to her food. The progression, heart breaking to watch.

Our appointment was for 8:30, the first appointment of the day, the one you get when you call at 7:01 am. If I could have figured out anything else to be doing on this beautiful morning I would have. Just getting her into the crate brought me to tears. I had already told the girls that we could not afford any more medical testing. That this is a stray cat and our budget only goes so far. That she might not come home with me... Tough talk last night, but now it's just me and Oliver and my heart is breaking. She has the absolute most beautiful green eyes you could ever imagine and at that moment they were pleading with me to leave her alone. Trusting me.

The vet was very good. The sign in the exam room where we sat read "Every pet deserves a good vet, and we HAVE good vets". Yes, they do. He lifted the top of the crate off so Oliver would not have to be moved. Ever so carefully he examined her as I held her head in my hands, stroking her face and eyes. In my heart I hoped it comforted her, calmed her. I could feel her body quiver with fear, but she never moved. This once active, inquisitive cat now lay motionless looking directly into my eyes.

It was at that point that I lost it. Apologizing for my tears, I just kept saying, "I'm sorry, I'm really sick and I think for some reason this is especially difficult for me." He was a sweet man, a little unsure as to what to do with me, he simply nodded and said, "It's okay." It took everything in me not to fall to pieces in that exam room. As I sit here and type these words, I'm still not really sure of all that fills this painful space. If I could pick some words out of thin air they might be helplessness, frustration, sadness, anger, fear...a most intense longing for things to be different. Why can't some things just be different.

In a few weeks my daughter Anna is going to have major surgery to repair a birth defect that only now, at the age of 19, has made itself evident. She will have her jaw broken in multiple locations, upper and lower, with extensive work on her temporomandibular joint and chin. We have been planning for this surgery, which was suppose to happen in August, for over a year now. I have the most intense longing for things to be different. Why can't some things just be different.

My bedroom window

I sat down to write this piece instead of doing my usual Cyber Monday shopping because I had to. When I put my fingers to the keyboard I had absolutely no idea what I was going to write about. I just knew that the only way to find out was to begin. As I looked up out of my window two bald eagles flew between my window and the pines in my yard. Beautiful, crisp white heads, wings spread, one right in front of the other. Eagles have always been important in my life, representing balance, intuition and spirituality - their presence bringing assurance that the divine is present. A validation of the path I am on, the direction I am going.

A reminder of the Holy. A reminder to let go.

Oliver came back home with me today. We are fairly certain that something is wrong with her spine. Neurologically, things look good, yet she is in a significant amount of pain and is unable to move because of it. Everything else checks out okay. As to what is wrong with her spine, we don't really know. I have enough pain and anti-inflammation medication to get us through three days. If she doesn't improve by then, well, I'm not sure what we can do next. I'm not really sure about a lot of things in this life. But this I do know - that it can be really painful at times. And that the biggest of lessons can come from the smallest of creatures. And that life is precious. All life. And we can talk big about things, like "not spending money on an animal" and "I know what I'd do" and "If it were my cat I'd take it out back and..." But when it's your life, or your heart, or your health, or your kids, or your pets...well, that big talk gets pretty small when the pain is yours.

I decided to go check on Oliver one last time in order to give you the most current update. I got down on all fours to crawl quietly to the spot between the table and the patio doors where she lay in order to take a picture. This is what I saw in that very moment. She lifted her head and gave me the most peaceful look, almost a smile if you look closely enough. As if to say, things will be okay...just as they are.

Peace,

Home...

2012-10-26T12:21:00.000-05:00

"Home is where you hang your hat."

I love being home, no doubt about it. I always have. Even when I was a teenager, I would have much rather hunkered down with my family in front of a good “made for TV” movie than to be out with a group of friends. To me, home feels good. It feels safe. It feels comfortable when the world seems edgy and rough. It feels consistent when everything else rushes to change.

In this world of striving – striving to be richer, striving to be smarter, striving to be thinner, striving to be happier, striving to be healthier, striving to BE anyone other than who we are in this very moment - in all of our conditioned discontentment, we fail to see that we are exactly where and who we need to be– in this moment. Yet, how can it be anything different? But if we are in a constant state of striving, how will we ever know? How will we ever become aware of the beautiful fact that we are already there?

In mindfulness meditation you intentionally commit to being fully present in this moment, not trying to improve yourself or get anywhere else, but to simply realize you are already where you need to be. You aren't trying to attain anything - not even mindfulness itself. You just accept things as they are. In Wiktionary, the Wiki-based open content dictionary, they give this definition of the Old English proverb, “Home is where you hang your hat".

Rather than feeling nostalgic or sentimental, one should simply accept any place where one happens to reside as one's home.

If we truly come to a place of acceptance about ourselves, if we stop striving and realize that in this moment we are ALL that we need to be, then home becomes a place within ourselves. Home is wherever we are, and coming home means a returning to our true selves, a place we are destined for. As the poet Cavafy describes in his journey home to the island of Ithaca, finding “home” was not some external place to arrive at, but a place of awakening and enlightenment within.

Keep Ithaca always in your mind.
Arriving there is what you’re destined for.
But don’t hurry the journey at all.
Better if it lasts for years,
so that you’re old by the time you reach the island,
wealthy with all you've gained on the way,
not expecting Ithaca to make you rich.
Ithaca gave you the marvelous journey.
Without her you would have not set out.

I am very thankful for the physical place I call home. But I have also been in a mental state where no matter where I am at; I can’t seem to find my way there. In my days of striving to find a diagnosis, I was further from home than I have ever been. Fear is like the kindling of the past fueling the fire of the future we dread. It keeps us moving outward, farther and farther from home.

Letting go and accepting where and who we are is not some sort of passive resignation. It is your intentional invitation to the unlimited capabilities that reside within. When asked why people are afraid of this acceptance, Jon Kabat-Zinn writes,

Maybe the fear is that we are less than we think we are, when the actuality of it is that we are much, much more.

The hat in the above photo still hangs in my home. I bought it during a time of great transition in my life, long before I became sick. I've put it on and taken it off many times over the past seven or eight years, each time hanging it back up on the corner of my mirror or on a hook in the entryway. It's presence comforts me. Seeing it there tells me I’m home.

Right where I’m supposed to be.

"Liberate Yourself From All Your Bullshit"

2012-10-18T09:01:00.002-05:00

“Can you question who you are? And are you comfortable with not knowing?”

~ Jon Kabat Zinn

Being chronically ill can really play havoc on your emotions. In fact, research shows that chronic illness and depression almost always, at some point or another, go hand in hand. I fought this idea for a very long long time. In my mind, it was bad enough to be thrust into the category of "chronically ill people", I was NEVER going to add myself to the list of "depressed people". This I could control.

Well, I can't even begin to tell you all that is wrong with the above way of thinking. I also cannot tell you how painful it has been to come to this realization. Yet, at the same time, it's been each painful step that has lead to the beginning of my freedom from this suffering. How so? Well I'll tell you two very important things that I have learned.

First of all, I had to get over myself. Labeling is wrong. Period. For more reasons than I can even mention in this post. We have this habit of experiencing life and then carefully putting those experiences in categories that we label as "good" and "bad". Had a pleasant experience at the DMV...good. Had to wait for my prescriptions for over an hour...bad. Today I heard from an old friend...good. Today no one commented on my facebook status...bad. My children spent time with me after our evening meal....good. My husband had to work late...bad. And so it goes...every day, all day long, for our entire life. We experience things, we label them, we tuck them away in our minds as facts. Some of this labeling serves a very good purpose. It keeps me from making decisions that could be harmful to myself or others. But quite often, our labeling serves no purpose at all and actually lends itself to the harm of my self or others.

Then, without even knowing it, we make decisions based on what our minds believe to be fact. For example... if I had a pleasant experience at the DMV I may choose to tell others how wonderful my counties DMV is. I may offer to go to the DMV for my husband next time the need arises. If I had to wait for my prescriptions for over an hour, I may tell my friends how horrible our Walmart pharmacy is. I may even change where I send my prescriptions to and ultimately have to drive extra miles just to pick them up. And let's say my husband has to work late...again. I may tell myself that he does not care about how difficult it is for me to put supper on the table without him. Worse yet, I may begin to tell myself that maybe he has had enough of my illness and is somehow falling out of love with me. Which leads to insecurity, which then leads to anger or maybe even resentment, which leads to me becoming short with him or verbally questioning his motivations.

So, second of all, what we need to realize is that our thoughts are not facts. Our thoughts are our experiences, often times hijacked by our emotions, labeled as good and bad and tucked neatly into categories in our minds. Without having to go into a lot of detail, you can easily see how our experiences can be misinterpreted. And it goes without saying that illness, medication, depression can all have a significant impact on how we label our experiences. As Jon Kabat Zinn so eloquently puts, "Stop living My Story. Liberate yourself from all of your bullshit". I simply am not the sum of my experiences.

So then, what am I? Who am I? This question never seemed so frightening as it did once I became sick. But it doesn't have to be sickness that brings this question to life. It could be the end of a marriage, it could be the loss of financial security, it could be death of a loved one, it could simply be old age. At some point in all of our lives, the identity we cling to lets go and all hell breaks loose. Who am I if I can't provide for my family? Who am I if I no longer have my health? Who am I if I loose my friends? Who am I if my spouse dies?

We seem to get through these losses, as difficult as they are, as long as something else remains for us to cling on to. But sometimes life takes away everything. And then what?

I have by no means lost everything. In reality, only death can do that, as far as the physical world is concerned. But I have lost enough to struggle with the question of Who am I. And it was not that I all of a sudden thought, "Oh my gosh, who am I?" It was much more subtle than that. The question came to me in the form of depression. And this depression made itself known to me in the form of anxiety. An anxiety that every so quietly entered into my life creating havoc with an already complicated illness. And what I found out is that the only way to get rid of that anxiety is to let go of knowing.

We hold onto knowing as if our lives depended on it. When in reality, it is the NOT knowing that brings true life. If we are preoccupied with who we “know” ourselves to be – I am this, or I am that – if we conclude that we are only the sum of our life experiences – then who we are becomes completely limited. When we end the sentence simply at “I am.”, then who we are becomes completely limit-LESS. Liberate yourself from self-identifying and you will find that life is so much greater than you could have ever imagined it to be. You will find that instead of being "let down" or continually disappointed by life, you presented with a never ending list of possibilities.

For me, I am no longer defined by my illness...or by my ability to run marathons, or by the wonderful mother that I am, or by being the wife of an amazing man, or by my painting, or....

I simply am. And that makes me everything.

Peace,

Creativity - one step at a time

2012-10-10T20:44:00.002-05:00

Since posting my last article, my husband Dave made his way into the Stillwater Gazette with his 90 day journey to the top of the Main Street Stillwater staircase. The 90 day mission, which ended on day 143, brought much more than making it to the top each day (157 steps in all), it brought a new perspective on life. Sometimes it just makes sense to do something that makes no sense at all.

Click Here to read the full article.

Life is good.

A Journey Into The Unknown

2012-10-09T16:02:00.002-05:00

Recently, my husband ended a 90 day journey to the top of the Main Street stairway in Stillwater, Minnesota. Funny, as I type that, it sounds like it took him 90 days to get to the top! Actually, the journey was a daily one. Every day as he drove through Stillwater he stopped and climbed to the top of the stairs to take a picture. This 90 day mission took him 143 days. What began as a whim on a cold February morning ended as something much greater - something unknown, yet powerfully significant. He says, "It's a great luxury to do things that don't make sense."

There is a white building on the left side of the street. It towers above all the rest and slopes without reason on the back corner. On the backside of this building there is a pair of windows.

Inside those windows lives a beautiful women.

She is my daughter, Anna.

This is her first apartment on her own. No roommates. No live-in boyfriend. No help from Mom and Dad. This picture was taken the day she moved in. Exhausted from the days events, she is graceful, elegant and filled with passion for her life. I painted the picture of her that you see on the wall behind. The eyes of a then 13 year old. Piercing. Asking their questions of me. Hoping, trusting.

This picture was taken on that very same day. Low lighting and movement producing a haunting reflection on life. These are how days seem sometime. Fleeting, ghost-like apparitions. We try to hold on, as if grasping at smoke. But the Universe has a different plan.

In the heart of Los Angeles, right next to Beverly Hills, there is an area called Sherman Oaks. This eclectic town is approximately 1,975 miles from where I live. In this town lives a piece of my heart. Sometimes a piece so large that its absence takes away my breath. Sometimes a piece so large that I scarcely can hold the joy that it contains.

This is my daughter, Amanda.

She and Daniel moved out to California four years ago with an old car, a few suitcases and a roll of toilet paper. They had nothing else...except a dream. A hope. And trust.

Last month I took my first trip to visit Amanda and Daniel. It's crazy what can happen in four years. When I think of all that has happened to me in the past four years - getting sick, fighting for my life, becoming disabled, learning and accepting - and compare it to all that has happened in her life...

I realize that none of us really knows how this crazy journey will go. Not one of us. Yet, we keep walking. We keep loving. We put ourselves out there again and again - being vulnerable - because the risk of losing does not even compare to the gift of being loved. So we chance it. Again and again. When the whole world thinks we're crazy and everyone else gives up. We just keep believing. Because some day...some day.

Some day you take this picture and you realize that love is bigger than you could have ever imagined

and it's worth every tear and every hope and every fear. And that 2000 miles aint nothin'.

And then there were three, where there once was

only two.

This is my oldest daughter Aleela and her husband Keith and the newest addition to our family, Adella Marie.

Being the oldest isn't easy. It makes you responsible. It makes you determined. Charting unknown territories, with an impetuous invincibility. Refined, lovely, compassionate.

They brought this miracle into the world and I can't help but be thrown backwards into the past each time I look into her deep blue eyes. I see a little girl in a pink dress, with a pink bow in her hair, standing on a stump in the yard singing to her hearts content. Unmoved by the world that surrounds her. Freely creating masterpieces of make-believe, joy flinging off the tip of a wand. Pure, care-free and open.

Oh, my beautiful Adella Marie. What will you become? Where will you go, my precious, precious baby girl. If you are one millionth of what your mama is, you will be rich with life.

I have no idea what steps you will take. But this I know - I refuse to live a life of fear

when it comes to this world. And I will work with all that I am

to show you the hope

and the beauty

and the joy

of this amazing

place.

In 1987 I was 21 years old. After the birth of my second daughter, Amanda, I was told it would not be a good idea to have more children. Two operations later - Anna May was born in 1993. Three seemed like a good number. A safe number, all things considered.

1996 I was 30 years old when I became pregnant with twins. Life will do that to you. Throw you that curve ball, when you're not looking. When you're not paying attention. It will just hit you square between the eyes

with the most amazing

marvelous

miraculous

life-changing

gift.

Meet Emma Jane and Sara Jane.

They were a two-for-one deal

and

I cannot imagine life without them.

They are the last two at home. They have known a life very different from their other sisters, although the sinew of sisterhood is more powerful than one can ever imagine. I see it between these two and it is the force that binds them all together, connecting them, holding them tightly through every storm. I see a beautiful trust in the knowing that no matter what, no matter what - they are never alone.

Often times when I talk of Emma and Sara people will say, "Oh, a surprise " But isn't everything in life a surprise? We are lucky that most often during our day things happen to go as planned. Gravity still pulls in the right direction, the alarm clock goes off when it's suppose to, the milk is still in the fridge... But it's all up for grabs, really. Yet we trust.

On September 28th, 2006, Judge Eric J. Lundell granted me a judgement of divorce from the father of these five daughters. He was my first true love. I met him at the age of 16 and married him at the age of 18. We had so many dreams. And for 22 years we watched most of those dreams come true. We also experienced the painful end of others. There are very few things in this life that shake your foundation like divorce, all horribly painful, all life changing.

In the middle of my writing this morning an old friend from work called to just say hi. She herself has experienced one of these "things" when she lost her husband to cancer a couple of years ago. She talked of how Fall made her reflective. How in that reflection there was sometimes a bit of sadness. She talked of the colors and how the leaves fall off the trees and things begin to shut down for winter, and how that brought about feelings of death. But only a "little sadness" she said, because like the new relationship she now finds herself in, and like the flowers that eventually burst forth in Spring, "things must come to an end so that others may begin."

It is our ability as human beings to take tragedy, in it's finest hour, and turn it toward reclamation. A holy redemption. The freedom to begin again.

I don't even know where to begin when it comes to my "second chance" at life. I think I've only had a dozen or so of them! But if it would not have been for the miracle of love and forgiveness, I would never have had the chance to be the step-mother of Casey and Maddie Johnson.

Being a step-mom is not something you grow up thinking about. In fact, in my day, the only vision of step-mom's were that of Lady Tremaine from Cinderella and the Queen from Snow White...not really images I like to emulate. It's tender, risky business. Hearts are at stake. The hearts of children, of mothers and of fathers. You tread this area like walking through a room full of kittens...in the dark. Slowly and softly.

There are simply no words to describe how blessed I am in this regard. There's a knowing that comes before this kind of love.It's what makes love all the richer. It's like sunshine after the rain. Like spring-time after a long winter. It's what keeps us loving again and again.

I started writing this morning because I was missing my daughters. It's tough sometimes, having kids live so far away and being too sick to travel. When I feel this way I have a tendency to start telling myself stories that are not very helpful. So I thought that maybe if I just started writing, I might work things out. Kind of like the journey that my husband was on - the 90 day journey that I wrote about at the beginning of this article. The one that went from 90 days to 143 days. He didn't really know what was going to become of his mission, he just knew he needed to be on it.

It's when I try to make sense of it all, when I try to ground my feet in something that really isn't there, that I struggle. My husband is so right. It is a great luxury to do things that don't make sense. Isn't that what loving is all about. If you think about it - most days it doesn't make good sense. But we do it anyway. We love, we trust, we hope...and we love again.We venture into the unknown.

No one has taught this to me more than my daughters.

Peace,

Four Years...

2012-09-26T09:29:00.001-05:00

This picture was taken a little over a year ago – August to be exact. I had just undergone what was supposed to be a very straight forward cardiac ablation. But because of the complexity of my illnesses and all of the medications I am on, nothing, absolutely nothing is ever straight forward. This particular surgery ended with the largest hematoma in my abdomen that my doctors at the University of Minnesota had ever seen. It was serious business and the recovery took months.

I have had countless situations in the past four years that have begun as simple procedures or administrations of medication and have ended with complex and life threatening circumstances. Too many to count and enough so, that visits to the emergency room bring a tremendous amount of fear to both myself and my family.

I’ve only seen this picture once before. I stumbled upon it, not knowing that it had been taken. The first time I could not even look at it. Not because of my own situation, but because of my daughter Emma, who is sitting next to me in the photo. This time, in my searching through photos this morning for something to post, I let myself linger a bit. A year has passed since then, and there have been other situations much like this one, where my family has been by my side. I cannot imagine what they go through.

Four years I have been sick now. Four years they have never left my side. Four years of hospitalizations, emergency room visits, life threatening reactions, coding - four years of chronic illness. Four years, day in and day out, twenty-four hours a day, seven days a week, three hundred and sixty-five days a year – my illness has impacted their life. I will never fully comprehend the affect this has had on their lives. Just looking at the face of my daughter in this picture makes my heart so heavy I begin to weep.

Yet, not once has my husband or any of our seven daughters ever complained. No once have I witnessed their frustration or anger. Not once have I ever heard bitterness or any complaint in regards to the chaos this has brought into our lives. Countless vacations have been canceled, plans have been changed, meals have been disrupted, work and school has been missed – sacrifice after sacrifice has been made on my behalf. At times my illness consumes all that is in its path and nothing shakes their unconditional love for me. Nothing.

I cannot imagine a love so great. I cannot fathom the depth and breadth of such a thing. I can only be present in its grace. That is all I can do. Lay myself open to this gift and simply receive. And then, with all that I have and all that I am – love in return.

To my family,

I love you. I love you beyond anything I could ever imagine.

Thank you for loving me so well.

....

Mom xxoo

Learning To Float

2012-07-11T13:27:00.000-05:00

The view from our bedroom door/window.

Last week my family and I spent seven days in a cabin on an island in northern Minnesota. We found this Shangri-La two years ago and honestly thought we would never be fortunate enough to experience it again. But as luck would have it, there was a cancellation the week of the Fourth of July and the caretakers offered it to us on a whim. At nearly 11pm on a cold February night I responded to the email without question, “Yes! We will come!”

Six months passed and our allotted time finally arrived. On the heels of a week full of family visiting from out of state, we took off for the island exhausted and ready for the quiet peacefulness offered by a small piece of land completely surrounded by beautiful clear lake water. With our first visit back in 2010 vivid in my mind, I could hardly wait to sit out on the deck in the cool breeze, read the books I had brought, fish the abundant waters, fill myself on camp food and nap whenever the need arose.

The day before we were set to take off, John (of John and Kim, the owners/caretakers) called us to warn us that they had had record rainfall and that the lakes were at least three feet above their normal levels. There were no beaches and most docks were completely under water. He assured us that he had created a makeshift solution and we should have no problem getting onto the island. John, the eternal optimist.

When we arrived at the mainland dock, we were immediately amazed at the height of the water. He was right, there were no beaches and everyone’s docks were under water. What we also noticed was that due to the damming of the lakes being fed by the Mississippi, the waters were full of tannin. Tannin is humic acid that is left in the water from decaying vegetation, primarily leaves. Our clear lake water looked like root beer – dark, dark brown with a reddish tinge. On a positive note, as John put it, “it’s as warm as bathwater”. And it most definitely was!

Our first day on the island.

Our first day there was mostly spent setting up camp and running back into town for groceries. Our week would eventually include my oldest daughter and her family as well as my parents, so this food haul would be a big one – about $500 worth. Running to the store is no easy endeavor when you are on an island, so we wanted to get everything all in one trip. Being that our day started around 5am, we had traveled over half a day to get there and the temperature was creeping near 100 degrees with high humidity (no air conditioning in our vehicle or in the cabin) – we ended our first day absolutely exhausted. I use the word “we” very loosely as I did very little of this work. Just managing to stay cool and not get sick was my number one priority. This was Saturday.

Sunday was another very hot and humid day. As the afternoon approached the skies turned a thick dark gray. With a storm on the horizon we told the girls that we could go out on the pontoon for only a short while. I think we left around 6pm. After less than an hour of fishing, Dave gave the two-minute warning. Not wanting to end our first trip short I joked with, “Ah, just five more minutes?” Nope, we’re heading back. There was to be no discussion.

You hear stories about people not having time to react when bad weather hits. I’ve learned not to take this fact of nature lightly. When we arrived onto the island we walked up the hill toward the cabin. I noticed that the girl’s suits and towels were still hanging on the line. I told Dave he should grab them so that they don’t get all wet. As he walked over to the line I noticed this wall coming across the water. It was not a wall of rain. It was simply a wall and it was coming fast. I yelled at him to leave the suits and come into the cabin. We barely made it into the cabin and the floor began to shake.

The cabin.

There is no basement. The cabin sits atop a hill on a cinder block foundation. The only place for us to go was to situate ourselves in front of the stone fireplace on the opposite side of the wind. Before we could even get huddled together on the stone ledge the trees around us began to snap. Some being pulled completely out of the ground, others were snapping off half way to the top. The noise was like nothing I have ever heard. For our teenagers, the whole ordeal was somewhat like a roller-coaster ride. Nervous laughter filled the air. For me, wisdom and experience made this the most frightening storm of my life. In a matter of less than ten minutes, our peaceful island looked like a war zone.

This picture was actually taken on our 2010 trip, but gives you a good idea of where we sat during the storm.

We were standing in front of the window to the left just as this tree went down.

Every building was spared. Not one tree fell on a roof. The largest tree fell right on top of the clothesline that Dave had been standing at when I yelled for him to come in. It literally fell right between the two trees that were holding the line up. For the next couple of hours we sat in the dark as storm cells passed through. Around 11pm we heard a faint voice calling out in the dark, “Is everyone okay?” It was John! Somehow he had made it on his barge/pontoon across the lake. As my husband said that night, he looked like the old man and the sea. Covered from head to toe in rain gear and a small headlight attached to his forehead, he came walking toward the cabin with coolers and ice in hand. By nights end he had supplied us with a place to put our food and lamps to see by. Night number two, we fell into our beds exhausted and hot, barley sleeping in order to keep our ears open for the next storm cell. That was Sunday.

John, the day after the storm hit.

This is the tree that went down on the clothesline.

One of the trees that snapped in the middle.

Monday morning John and Kim arrived with their good friends Ed and Gloria. The kind of friends that you can call at midnight the night before that hop in their car, no questions asked, and drive for hours with chainsaws in hand in order to help you out in a bad situation. The kind of friends that spend the next two days from sunrise to sunset in stifling heat and humidity cutting, lifting and raking all the while with smiles on their faces and laughter to ease the pain. All the while making sure we had what we needed – even a generator to run the fridge and water pump so we could have water to drink and a toilet to use. Remember, everything has to come over by boat. And once here, has to make it’s way onto the island and up a hill – a hill now covered with fallen trees. I’ve never seen people work so hard. That was Monday and Tuesday.

Ed, making his way through the next tree.

John..."Everything has a process." And so it does.

From left to right: Kim, John, Gloria and Ed. "The Fearless Four"!

By Wednesday the sky had cleared and the electricity seemed as if it was going to stay on. Finally, we could cook, see clearly at night and run our fans! I called my daughter as well as my folks and told them that they might want to consider staying home. Even though the storm had finally moved out, it was hot and the electricity situation was sketchy at best. Neither took me up on the suggestion. By Wednesday morning Aleela, Keith and baby Adella arrived. By Wednesday afternoon my parents stepped foot on the island. By Wednesday evening the second storm was on its way. This one forecasted to be worse than the first, 80+ mph straight line winds, damaging hail and lightening. This time we all barely made it off the island. Thankfully we had rented my folks a motel room in town due to the heat, so we all headed that direction. Let me tell you, I was in complete panic mode. When Keith notified me (he has satellite internet service on his phone) that the storm was on its way, my heart just sank. How could we have put all these loved ones in this danger? Why didn’t I tell them all to stay home? But there was no time for remorse, we packed up the bare necessities, ran down the hill and boarded the pontoon. Every second we were on that water seemed like an eternity. All I could imagine was that wall coming across the water again. There was no way we would stay afloat. Once again, we barely set foot on shore, ran up to our vehicles and the wind hit. Branches blowing across the road we sped towards town. We waited storm number two out at the Timber Lodge Hotel and by nightfall we were back on the island with no electricity. That was Wednesday.

Emma and Leslie coloring by sunset.

Thursday the heat and humidity moved out and we had a simply lovely day. My parents had purchased a one-day fishing license and Thursday was the day. We spent the morning and the better part of the afternoon under the shade of the pontoon canopy pulling up sunfish barely big enough to swallow a hook. And swallow it they did! Most of our catches were thrown back in only to be gobbled up by the eagles that surrounded us. One keeper in all, but it was a perfect outing. It’s been years since I have fished with my mom and dad. I will cherish those hours for the rest of my life. As our luck would have it, for some random reason the electricity went out again Thursday evening. There were thousands still with out power, so my guess is that whatever the fix was, it was temporary at best. That was Thursday.

Keith, finding a few hours to fish between storms.

Friday we awoke to extremely overcast skies, torrential rain and no electricity. It rained all day. The temperature dropped significantly and the cool breeze made it sweatshirt weather. A welcome change!! Thanks to Aleela and her ability to make just about any situation fun, the teenagers had a wonderful last night at the cabin. They stayed up late playing cards and pictionary and I was lulled to sleep by the sound of their laughter floating up the stairs to our room. That was Friday.

Adella and I, watching the rain at 5am, waiting for the electricity to return.

The girls playing cards Friday night.

Saturday morning we all awoke at 4:30am with my granddaughter Adella. She was to be the alarm clock and with perfect timing she awoke on schedule. By 6:30 they were packed up and back on the mainland and by 7:30 we were in our van and heading into town. As we rode our fully loaded pontoon back to shore the weather could not have been more perfect. The air was crisp and still, the water like glass, the sky deep blue and the loons, not more than 20 feet away, calling back and forth to each other to greet the morning and bid us our farewell. It was surreal. No one spoke. There was only listening. There was only that moment, in that place, in that time.

I’m pretty sure if I could have listened into the minds of my teenagers I would have heard quite a different “tune” than what I was experiencing in that moment. By day three they were asking if we were going to stay or go home. Roughing it is not exactly a 16-year-old's idea of a vacation. Although, if they admit it or not, they had their moments of fun. Moms know these things.

So here I sit. It’s Wednesday of the following week. We’ve been home four and a half days and I’m still recovering. I think adrenalin (and pain medication) kept me going and it was not until we arrived home that I realized the toll the past two weeks took on me. Thankfully there was literally nothing for me to do when I got home. Our daughter Anna stayed back this trip due to work, and made our homecoming simply delightful. Once she heard how the trip was going, she made it her goal to make sure I was able to rest the minute I walked into the door. The house was absolutely spotless, the plants and gardens watered, the laundry done, the refrigerator stocked, the garage clean, the sheets changed…she didn’t miss a detail – even a welcome home sign on the kitchen whiteboard. It was a gesture of love and compassion in its truest form, and I was moved beyond words. This is my daughter, Anna.

I knew I wanted to write about the week eventually, but for the first few days I really struggled - one, because of pure exhaustion, and two, because I really did not know what or how I wanted to write. I wanted to recount the week and its details, yet something was pulling at me, as something always does. Something bigger.

As life will do after any vacation, it hit me pretty hard. Even though our time on the island was full of it’s share of struggle and daily maintenance, it was still a reprieve from the “norm”. And despite the coming and going of weather and electricity, there were moments pregnant with beauty and all that nature sings to our hearts in the spaces of stillness. These minutes were enough to carry me away from the pain of illness, to empty my mind of the family crisis and struggles left behind back home and to bring me comfort. There were times when even though I felt like I was literally drowning, there was peace to be found under the water. The peace that comes when you give up the struggle only to realize that you can float. The peace that comes when you stop fighting against what “is”.

Enjoying the last evening on the island after the rain cleared.

This is the lesson I brought home with me. I didn’t realize it at first. When life “hit” and I lay in bed crying, filling my head with stories of “I can’t” and “this is too much” and the pain of things I have absolutely no control over came rushing in like the flood waters up north – I finally just let myself go under. Like the moment Dave looked at me during the first storm and said, “Honey, this is all we can do” – I just had to let go. And you know what – I float. When we stop struggling, we float. We just need to rest enough of ourselves below the surface of things until we find ourselves upheld. Believe me, this is not an easy thing to do. But the heart of trust is believing you will be held up when you let go. It’s only under the surface that we become weightless and things slow down. This letting go - this is faith. That we cannot stay under for very long only affirms that we must let go again and again in order to live life to its fullest.

Why didn’t we just head home after the first storm? That seems pretty obvious to me now.

Peace,

It's a little bit funny...

(for Sara Jane)

It's a little bit funny this feeling inside

I'm not one of those who can easily hide

I don't have much money but boy if I did

I'd buy a big house where we both could live

If I was a sculptor, but then again, no

Or a man who makes potions in a travelling show

I know it's not much but it's the best I can do

My gift is my song and this one's for you

And you can tell everybody this is your song

It may be quite simple but now that it's done

I hope you don't mind

I hope you don't mind that I put down in words

How wonderful life is while you're in the world

I sat on the roof and kicked off the moss

Well a few of the verses well they've got me quite cross

But the sun's been quite kind while I wrote this song

It's for people like you that keep it turned on

So excuse me forgetting but these things I do

You see I've forgotten if they're green or they're blue

Anyway the thing is what I really mean

Yours are the sweetest eyes I've ever seen

Happy Camper

2012-06-05T12:51:00.000-05:00

The first weekend in the new camper was a complete success...but not without a few bumps and some great stories.

Dave took Friday afternoon off so we could get on the road at a decent time. Our destination - Willow River State Park - about 20 minutes from our front door. Perfect for our "trial run". Plus, the kids had end of the year projects requiring them to be home at different times, so the close destination allowed Dave to shuttle them back and forth. This was definitely not a relaxing weekend, especially for Dave. But wonderful nonetheless!

Camper loaded, we jumped on the two lane highway that would lead us to our final destination. It was a perfect day. Sunshine, cool breeze and nothin' but shit-eatin grins covering both of our faces. And then...

SCREEEEEEEEECH!!!!!!!!!

These are the tracks that were left by the car that lost control in the opposite lane and screeched toward us in our lane. Yes, our lane is the one to the right. In the blink of an eye. It was the closest I have ever been to a real head on collision. HOW Dave managed to move the van and trailer over quick enough without losing control still dumbfounds me. Brakes locked, the oncoming car barely squeezed between our trailer and the line of cars in the other lane. The roads were packed! Three cars wide, this crazy driver managed to maneuver his way out of the middle and back into the correct lane without damage. We pulled off into the parking lot of the campground and sat in disbelief. All Dave could say was, "What just happened?" Crazy.

Happy to be alive, we put the near miss behind us and headed to our spot in the woods. It might be good to mention here the importance of looking at all the sites prior to making one's reservation instead of assuming that all spots will look like the ones previously camped at.

This was our spot in the woods...

Not really the "surrounded by the depth of the forest" I was looking for. But hey! This is a trial run, I'm happy to be alive and I'm ready to set up home in the camper of my dreams! Life is good.

Dave took care of all the outdoor set-up and I went inside to make a pot of coffee. (Oh....the stress of it all...) Here is a shot of Dave drinking his first cup of coffee. It's the simple things, isn't it?

I figured out that by leaving the front window cover down, I did not have to look at the highway where we just about ended our lives. Out of sight, out of mind!

This is a picture of Dave's parents, Ralph and Bernice. It is their life and love that made this camper a reality for us. Never will a camping trip go by without this picture at the head of our table. These smiles, a constant reminder of their love for family, for travel and for the great outdoors.

We love you Mom and Dad.

Our first guests were Anna and Evan. They came for supper the first evening and had to head back for jobs in the morning. After supper Dave made a fire and we sat and visited while eating smores for desert. It was the perfect ending to our first day.

Sara was the first daughter to sleep in the camper. This is her pretending to be asleep for the picture!

This is Dave REALLY asleep. Exhausted from the days events, all it took was getting horizontal and he was out like a light!

Sara got to pick out the first breakfast of the trip and she ordered up pancakes. Other than getting used to new heat, a different pan and a sticky spatula...they turned out pretty good.

I think this is the look of satisfaction...and a full tummy.

Bound and determined to get me into the woods, Dave decided that he would take a look around.

And by 5:00pm on our second day, he did exactly that. THIS is spot #2! Smack dab in the middle of the forest! He found a site that did not have a reservation sticker on it, confirmed that it was a "no show" and waited up at the ranger station until five minutes after the official deadline for cancellation.

A man with a mission...

"RRrrrrr....I have created fire!"

Emma was the second daughter to stay with us. Her boyfriend, Tucker, brought her out and they spent the evening around the fire with us. Before Tucker took off for the night we polished off what was left of the smores. It was a wonderful ending to our second night of camping.

This is Emma drinking hot chocolate by the morning campfire. She ordered eggs, bacon and toast for her breakfast, so this is her patiently waiting...

...while I fried up breakfast inside!! My daughter Anna was talking the other day about Dave and how he always has a way of making things easier for people. He's great at fixing things and even better at making good things AMAZING. She then said it would not surprise her if one day I could do everything I need to do from bed...well folks, this comes pretty close!

I'll leave you with a couple of shots that Dave took on his journeys out and about last weekend. With this being our "trial run" and all that it takes to get things set up, there was not much time for relaxing. But he did manage to sneak out Sunday morning and make it to the falls.

We're definitely hooked! We came home that night and immediately started working on reservations for the rest of the summer. Having a small camper means less work inside for me, plus all the comforts of home that make this a possibility for someone who does not always feel so great. As I walked around in the woods on Sunday I found myself on the verge of tears...good tears. I honestly never thought I would be able to do this again. And smelling the smells of woods and campfire, watching parents walk their children along the paths, hearing the birds wind down the day and greet me in the morning - it made me incredibly full. Full of thankfulness and joy to be alive. I told Dave, when we made this decision, that this was one of the biggest items on my bucket list. In fact, it was number one. Now, how many people can say they've checked off number one?

Imagine that!

Peace,

Sinking The Boat...and other great ideas!

2012-05-31T11:04:00.000-05:00

I remember this moment as if it were yesterday. This was our first stop on an island that what would soon become our favorite spot in the boundary waters canoe area of northern Minnesota. We had not been resting long when my husband looked at me and said, “I think I’ll try to sink the canoe.” The fact that this was my very first canoe trip, combined with the fact that we were a long, long way from any sort of civilization, as well as any cell phone reception, made this comment one of great concern to me. Doing the best I could to hold back any indication of doubt or panic, I simply said, “Why would you do that honey?” He went on to explain to me that all canoes must be tested to see if they float after being capsized. He and his father had tested the canoe many years prior after they had first built it, but since he had re-fiberglassed it recently and made some fixes he had not yet tested it again to see if it would float.

I still didn’t like the idea. What if it didn’t float? What if we couldn’t get it back out of the water? What if we damaged it – this beautiful forty-year-old canoe? What if…? I simply did not want him to do it and I remember a bit of an argument because of his determination to find out. And so, with me standing on shore ready to take a picture of this most sure disaster to come, he gently rocked the canoe back and forth. With each dip the water slowly filled the canoe until only the stern and bow could be seen. And then, in a moment of silent stillness, he stood and waited. Holding tightly to the rope, he watched as the slack let go and the canoe floated gently, barley above the water’s surface. The moment captured here in this photo.

My husband has taught me a great deal about fear; mostly, how to respect it and learn from it – and not run from it. It’s taken me books upon books to understand something that has always been second nature to him. Reality is exactly that – REALity. It’s what’s REAL. And it is far better to move towards that which is real than to struggle against it or worse yet, to pretend it does not exist.

This does not mean that life will always be easy. There’s risk and vulnerability involved. And sometimes we have to take on a lot of water before we realize whether or not we can float. But it’s not until we understand the truth of the matter that we can live in the honesty where joy and freedom reside. It’s in this space that we experience this world fully – not holding back, not preparing an escape route, not looking for alternatives – living fully in the reality of the present moment.

*~*~*~*~*~*~*~*~*~*~*~*~*~*

I wrote this post for my facebook page today. Sometimes the idea for what I want to write comes to me with little to no work involved. This often happens when I have been reading something really good or I have had some sort of event in my life that demands my writing of it. And then, there are other times when I go looking. Today was one of those days. I often start by either flipping through some of my favorite books or I begin to scour the thousands and thousands of photos my husband has on file, waiting for something to jump out at me. The flipping didn't work. Nothing seemed to grab my attention. So I opened up our picture warehouse and began my perusing. Immediately, this photo pulled me in.

I've looked at this picture hundreds of times. It's in our BWCA 2008 folder and is one of my favorite places to look. The trip itself changed my life. But for some reason, this picture told me something different today. As is often the case, it told me what is going on inside of me. Which, of course, I did not realize until I finished the writing! Kind of like a dream will do upon waking.

I had a "boat load" of appointments over the past two weeks. It seems like my main doctors reached their six month evaluation point all at the same time. But it was during these visits that I made some rather big decisions. Decisions that came on the heels of a lot of pain and frustration. Decisions based on the potential for serious long term side effects, the ongoing inability to recuperate from chemo therapies and the recent "leveling off" of certain blood work. I have decided once again to try and taper off the prednisone that I have been on for three years as well as taper off the IVIg infusions.

I've tried twice before to taper off the prednisone, only to return back to higher dose due to intense pain and illness. Prednisone is the drug people "love to hate", or so the saying goes. It's a miracle drug in regards to my illness, but the side effects, both long and short term, have serious consequences. But after reading Coping With Prednisone by Eugenia Zuckerman and Julie R. Ingelfinger, M.D., I have come to the conclusion that I have not given tapering a fare shake. In a nut shell, it is normal to feel extremely ill during the tapering and for months thereafter. As I gauge what I was experiencing with what seems to be acceptable withdrawal, I have decided that I can give this another chance. But I'd be lying if I did not tell you that it scares the shit out of me.

In regards to the IGIg, this is my thinking. I've been on infusions for well over two years. When I began on them I was not on two of the other major chemo therapies that I am on. I would like to see if these drugs alone can manage my illness. The IVIg was not treating the autoimmune illness itself, it was treating a symptom - the peripheral and central nervous system issues I have been having. The other drugs I am on actually control the illness itself. It could be quite possible that these medications are now keeping things in check and I would no longer need the infusions. And the only way to find out is to fill the boat with water!

My initial reaction to these thoughts as they entered my mind was pure fear. Fear of the "what if". But as I worked through the fear what I realized was that my hesitation in attempting this was based out of my belief that I could somehow control my illness. A control that had become blind to ALL possibilities. Which meant that maybe, just maybe, letting go would bring about something better and not necessarily something worse. Once I realized this, I felt very compelled to speak to my main doctor about it. The appointment went very well and we were both in agreement as to what should be done. Let's see if the boat floats!

So here I am, week three on my first decrease of prednisone and one half infusion later, and I'm feeling pretty shitty - but giving it my best shot! I have to say, I'm not that thrilled about potentially messing up my summer with withdrawal symptoms. But is there really any good time? Nope! No time like the present, that's what I always say!

I do have some exciting news to report!! As many of you already know, being outdoors has always been very important to me. There is no holier place for me than the depth of the woods, surrounded by Nature. I have not been camping since getting sick. In fact, there is quite a dissertation in my application for social security in regards to the things I no longer can do, and camping is a big part of that. There is just no way that I could withstand the amount of work it would take to set up camp, let alone sleep on the cold ground, be without heat or cooling (whichever the case may be) or especially be any distance from a bathroom.

So this is my most recent anniversary gift (coming up on June 4th!)...

Completely loaded with one of these... ;-)

...and one of these...

....and some of these...

...and air conditioning...and heat...and all the amenities of HOME, right there in the woods with you!!!

Now, in my pre-illness days, I would have shunned this whole camper idea with all the piousness of a die-hard naturalist. But today....this little home away from home has made my dream of being out in the woods a reality again.

Did I mention I have the best husband EVER?!?! Just can't imagine how I ever got so blessed.

So, our first attempt will be this weekend, about 15 minutes from our real home as to not travel too far away this first go-around. I can hardly wait. Now THIS will most surely give me something to write about!

Until then, peace to us all ~

What You Don't See

2012-05-08T13:32:00.000-05:00

This is my current Facebook profile picture.

May 2, 2012

This was my Facebook profile picture on March 22, 2012.

...and January 7, 2012

...and December 4, 2011

...and October 19, 2011.

And...

This is me today. In fact, this is me almost every day.

Minus the make up,

minus the wonders of Adobe Photoshop,

minus

any pretense.

May is lupus Awareness Month. If you didn't know me, or have lupus yourself, or actually know someone with lupus, you most likely would not even know this small piece of trivia. You might not even know what lupus is. Four years ago, before getting sick, I sure didn't.

Each day this month various lupus Facebook pages have been posting interesting and informative snippets of information to help bring awareness to people in regards to lupus. Most of the information I already know, but every now and then, something shows up that I was not aware of and I am reminded of how important these communities are to me.

But, if I had to guess, the average person on Facebook probably does not "Like" these particular pages. In fact, I don't imagine my friends and family even do. So if one does not "Like" a particular page, then one does not receive the "informative snippets of information" that is sends out every day. Which got me thinking...

What do I want you to know? What do I want you to really know?

In fact, what if I only had one thing I could write about today? What would it be?

It would be this...

Lupus can be a very invisible illness. Because of the chronic nature of the disease, those who have lupus must learn how to manage with the illness on a daily basis, every day...seven days a week, 365 days a year...every single day of their life. Mothers continue to care for their children, fathers go to work, students go to school, people mow their lawns, cook their meals, shovel their walks, go to social events...all the while struggling with issues such as severe joint and muscle pain, nausea, vomiting, headaches, painful skin conditions, vision problems, kidney failure, cognitive difficulties...the list goes on. And most days, if you were to look at any one of these people you would have no idea the suffering they are enduring.

I've been very fortunate in my life. I have a supportive family and a beautiful circle of friends that refuse NOT to know the real me. Not even Photoshop pulls the wool over their eyes, and I simply cannot imagine it any other way. But there are many out there who travel this journey completely alone. I hear stories every day of partners and spouses that are unable to fulfill their roles as caretakers. I hear stories of comments spoken by well meaning friends and acquaintances that absolutely break my heart. A simple "you don't look sick" can pierce like a knife when you're standing there suffering silently. Even the tone of it seems to imply you must not be sick then. Yet, "You look nice" is such a lovely comment to get and does nothing to imply any conclusions about whether or not I am sick.

It took a lot for me to post that last picture. Not out of any sort of vanity, heaven knows I'm way beyond that whole concept! But because just like everyone else struggling with this disease every day of their life, I work really hard to....yep, you guessed it...not look sick. And therein lies the crux. Like my mother always said, "You're damned if you do and damned if you don't!"

So what advice do I have to give? What snippet could I leave you with today that might actually make a difference? I think it would be this. And this pertains to anyone you meet in your life.

We must always do our best to not make any assumptions.

Because we just never know. The person standing before you could be struggling with depression, they could be victim of domestic violence or they could be suffering silently from a disease such as lupus. We just never know. Assuming anything because someone looks happy or dresses well or just happens to be out for the night is an assumption we must not make.

Looking at our friends and loved ones through the eyes of compassion, trusting that their journey is exactly that - their journey and loving with our whole hearts is what we can do.

I recently received a post on my Facebook wall that said this,

The average person tells 4 lies a day or 1460 a year;

a total of 87,600 by the age of 60.

And the most common lie is...

I'm fine.

Who knows if this is true. I actually think the numbers should be much higher, especially if we take into consideration all the lies we tell ourselves! Either way, this does not make the job of caretaker or friend very easy. I will be the first to say that I could do much better at being honest and letting others know when I am sick. Just remember that those living with chronic illness are managing the best they can each day with something that will never go away. Actually admitting you don't feel well every time you don't feel well...well, even WE get tired of hearing about it!

If you would like more information on lupus and how you can help bring awareness to your community, please visit The Lupus Foundation of America.

Peace,

All Else Is Madness

2012-05-04T12:07:00.000-05:00

“See if you catch yourself complaining, in either speech or thought, about a situation you find yourself in, what other people do or say, your surroundings, your life situation, even the weather. To complain is always non-acceptance if what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.”

Leave the situation or accept it... If we don't choose one or the other, what are we left with?
Suffering, plain and simple.

In some situations, we have no choice. I can't change the weather, and I most definitely cannot change being sick. So I can either linger in my miserableness - believing the untruth that it will somehow help - or...OR I can accept my circumstances and live in a place of power. Knowing I am the creator of my own happiness, my own peace.

As someone suffering from chronic illness, understanding this truth can be one of the greatest contributing factors to my well-being. Realizing and exercising my power to either accept a situation or to leave it creates an environment in which I can move freely in my life and not waste my energy existing in a place of friction.

If I utilize my place of power in order to accept my situation, what does that look like? Let's say all week I looked forward to Thursday to write in my blog. In my mind, the stars would all align on this day - kids gone, husband gone, laundry done, no doctor's appointments... It's not only the perfect day, it's the only day. But guess what? Thursday I wake up sick. Body hurts, bowels don't work, brain in a complete fog. THIS was really my Thursday. Disheartened and frustrated, I crawled out of bed, lit my favorite candles (maybe creating the mood will help) and plopped down in front of the computer. Let me tell you...it was painful. Type...delete...type...delete...type...delete. Pick up a book to get some ideas. Type...delete...type...delete. Go get something to eat, make some tea. Type...delete...type...delete. You get the picture. Friction is not a pleasant state of being. The minute I gave myself permission - the minute I decided that I didn't want to be in this place, a beautiful calm came over me and I got to ask myself the open ended question of, "Now what can I do?" You see, it isn't about being defeated. It isn't about waving the white flag at all. It's about accepting reality and realizing I have the choice to create my own happiness.

If I utilize my place of power in order to leave my situation, what does that look like? Often times, we remain in limbo, in that place of untruth in order to not let someone down. It could be ourselves or it could be someone else. For me, many times this is the case with family members. Let's say I have an understanding with myself. When I am really, really sick, can't get out of bed kind of sick, I have no problem letting my family take care of me. I simply don't have a choice. But there is also what I refer to as the gray area of my sickness. Opposite of being down for the count is a great day. The kind of day that fools me into thinking I'm not really sick. These are my best days. In the middle of these two extremes is where I live most of my life. Working really hard to not look sick and keeping things in a state of normalcy. I do this mostly because my family has been through a great deal with my illnesses and if I can help it, I like to give them a break. This is also a place where I quite frequently live in limbo - in that place of untruth.

A classic example would be cleaning up the kitchen after supper. For me, this is a very difficult task. By this time of the day I am usually feeling quite sick. It is also one of those tasks that, prior to becoming ill, was always something I enjoyed. (yes, I'm weird) I love taking care of my family, I always have. Letting everyone sit and visit after a meal has been a gift freely given. My family is fantastic at helping me in many other areas, but in this particular situation, I like giving them a break. But I have noticed as of late, that what I want to do, and what I should do are not in alignment. First of all, I am suffering physically. That's the obvious. Second of all, my mind is suffering. The thoughts I am thinking are not consistent with what my actions are intending. This is a snippet of my brain... I can't do this...just get the table cleared off...I can't do this...just put the food away...why won't they just offer to help...just let them go...I can't do this...next week I'm gonna have a family meeting...oh, they're so happy, just let them go...I don't want them to worry...just wash, don't worry about drying...ugh, I wish they would help me put these dishes away...I think I need to sit down...once again, you get the picture. I can promise you, as long as I do not accept the reality of what is and continue to make myself the victim - albeit a martyr with the very best of intentions - I will suffer. And so will my family.

It's crazy what we tell ourselves really, if you seriously give it some thought. There are always two choices, and two choices only. Accept or leave. Unless, of course, we enjoy remaining in limbo, convincing ourselves that complaining (or sadness, or anger, or bitterness, or hopelessness, or fear, or worry...) will somehow miraculously change our situation. Suffering is caused by being "here" and wanting to be "there". Once we empower ourselves with the choice to either accept or leave, then the door is wide open, and true change happens. Change of heart, change of circumstances...change of life, where there is no inner conflict, no resistance and no negativity. And where there is no inner conflict -

Peace resides.

...and maybe a little madness!

What I Wish I'd Said...

2012-04-18T16:15:00.000-05:00

View from the couch.

Today is “one of those days”. Seems I’ve been having quite a few of those days in a row here lately. I’ve been seeing a physical therapist for some neck and back issues as of late. So at least I have a few new techniques in that area that give me some relief. But overall, the body simply is not cooperating. Joint pain that feels like it’s connecting the joints in my entire body like some sort of electrical “connect the dots”, completing a circuit that makes me feel like I’m on fire. Add a little neurological numbness and I’m pretty much a bumbling lethargic mess! Oh….and did I mention GI issues that make whatever I put in my mouth feel like a game of Russian roulette? I think you get the picture.

So after seeing my family off for the day, I decided there would be no denying this one. I unplugged the land line, put my cell phone on vibrate and hid it under a pillow in the other room (not really sure why I didn’t just shut it off…maybe I’m into the drama of it all?) and curled up on the couch. I avoid the bed during the days when I really need to sleep because Maggie, our biggest dog, will not attempt to sleep with me on the couch, and I really did not want to be disturbed. I have a tendency to sleep very lightly during the day, which can be frustrating.

I’m awake to report that I slept very soundly. From 9am to 11:30, I was completely out! In fact, I had a couple of those kinds of dreams where I tried to wake up and just could not move. It felt good. As I lay there slowly waking up, I began to think about a friend that had recently contacted me via email in regards to the frustrations she has been feeling because of her illness. Not feeling so well myself here as of late, my response was caring, but brief. There was a lot I wanted to say, but could not muster up the energy. So in my waking, I thought about those things that I wished I would have said.

In her note, she made this comment, “There are days when I feel like life is just passing me by…” If I could pick out one fear that was most prevalent in my thinking the first two years of my illness, this was it. Life was literally passing me by, and it scared me to death. I was on long term disability, but still officially an employee of the Department of Human Services, and I felt that each passing second put me further out of touch from the job that I loved. It just so happened that all my dearest friends were also my coworkers. Over an hour away and into the city, I worried that the distance would slowly take the dearest people from my life. Not being able to hold a paint brush, I panicked that the talent I had worked so long to perfect would no longer be a gift I held. My children were either relying on the other adults in their life or fending for themselves. New things were being learned out there, my friends were going on retreats without me, my children no longer depended on me…life was passing me by. I lay there in my hospital room day after day begging for things to end, worrying that if I did not get over this illness I would never know happiness – real happiness – again. This was not the life I intended.

So now, here I lay, almost four years later. In the quiet of my home, sun breaking through the clouds, feeling really, really sick and I am completely at peace. And I think about what has gone on in my life between those days of endless worry and fear and these peace filled moments. In some ways I’ve gotten better physically. I’m not nearly in the hospital as much. In other ways, I’ve gotten worse. I’ve added two new conditions and host of new symptoms. I’ve also had a major heart surgery that didn’t go so well. The physical therapy I am receiving is to help me deal with issues that will never go away, in fact, they will only get worse.

But I love my life. This life.

You see, I felt as though my life were passing me by because I thought I knew what my life looked like. So if I’m not living that life, then I must be missing it.

I think that from a very young age we start to put together, piece by piece, the structure that we believe makes up a happy life. A long list of what is acceptable and what is not. These are good things…these are bad things. We label, we sort, and we check them off. One by one, creating the life that we believe makes us happy. One by one, creating a picture of ourselves, building our preconceived egos.

I remember the moment I spoke to my boss on the phone, agreeing that the time had come for me to give up my position. A career I dearly loved. A group of people that had become my closest friends. A future I built my dreams on. A financial security my family depended on. The only analogy that even came close to what I was feeling during those days was the analogy of stepping off a cliff with the ridiculous hope that something would magically appear out of thin air and catch me. The kind of stuff you only see in cartoons. A far cry from reality.

I didn’t realize it then, but in those moments of stepping off that cliff, I had begun the long journey of learning how to let go. Sometimes we hold so tightly to the list that we fail to see the reality that is before us. We spend our days forcing a round peg into a hole that does not even exist anymore. Life is continually changing. Every second there is a new you – based on what is happening right here, right now. We have a choice. We can either listen to what the present moment is telling us or we can fight against it, holding on to our list as if they can save us, forcing our pegs into holes that no longer exist.

Or…we can learn to listen.

Listening to the present moment does not mean giving up. It does not mean letting go of things that can really make you happy and settling for second best. It means listening to your reality and opening up your life to endless possibilities. The potential and paths to happiness - to true inner peace – that you never even knew existed.

Look at it this way. Last week my car was making an odd sound that made me feel quite uncomfortable to drive. My husband did a great deal of research and found out that the sound was due to bad bearings in the front driver’s side tire. He took the wheel apart, bought the tools and parts needed, put things back together and the sound disappeared. I now drive in comfort, content in the knowing that fixing the bearing made me feel better. Now let’s say that next week when I am driving the car I hear another odd sound. In my mind, I know what makes me feel better. So I ask my husband to please fix the front driver’s side wheel bearings…again. No need to do any research, I know what the problem is, and I know what makes me feel more comfortable driving.

Sound silly? Yes! In fact, it sounds a little unsafe. But how often we do this in our very lives! In the case of the car, we are more than willing to think things like – chances this is the same issue are pretty slim, I better see what else might have changed – or, it’s winter time now, maybe the cold has had some sort of impact – or, maybe the car is getting old and certain things go wrong as a car ages – the list is really endless because time changes things. And what made things comfortable in the past may not necessarily work today. If we fail to listen to reality, then the car may never work well again.

The same goes for you and I. If we fail to listen to the present moment, we won’t know the truth of the matter if it comes knocking at our very door.

Today was just one of those days. I knew it when I woke up and I listened to my body. I understand that we do not all have the opportunity to listen so carefully and respond so appropriately. I can’t even most of the time. Family responsibilities, doctor’s appointments, new grandbabies…they all push caring for myself aside at times. But the longer I deny my truth, the more uneasy and less peaceful life becomes. And if I deny it long enough, the consequences can be life threatening.

By listening to what this moment brings, by living my life open to change and letting go of my assumptions of happiness, I find myself in a quiet place of peace. Knowing that having compassion for myself is the greatest gift I can give – to me and to those I love. And in the end, I find a contentment that, quite often, just makes me happy.

Being Comfortable In Our Own Skin

2012-04-12T09:13:00.001-05:00

"The spiritual life is about becoming more at home in your own skin." ~ Parker J. Palmer

This quote was in my Book of Awakening the other morning. As I read it, I looked over at Jake the dog and thought to myself, there is no one in our home more "comfortable in his own skin" than Jake the dog. Nothing much bothers Jake. Quietly unassuming, disheveled...always there. Jake knows what it means to "go with the flow" and no matter what, loves unconditionally.

As Parker Palmer suggests, all spiritual paths help us to live more fully in the lives we were given. When people ask me how it is that I deal so well with all of my illnesses or they want to know what they can do to better live with the "lot" that they have been given, I always take pause before I answer. Not because I don't have an answer, but because the answer I have is one that is of great importance to me and I want the words spoken to to be as helpful as possible.

I watched a home improvement show the other day where the previous owners of an old home had built a new wood deck over the top of an old existing front porch at least 100 years old. The new deck, which should have lasted 30 years, was crumbling before them. This is what we do in our lives. We put on clothes that make us feel better, we try fad diets that take off pounds in less than 30 days, we post positive thinking lists on the sides of our computers, we read How To books and take on the identities of the "guy that found the answers"...we build our new decks over the top of our old porches every day. It's not until we make our changes to the foundation that we can withstand whatever walks across our lives.

What changed my life, what helps me to live more fully in the life I have been given, what has had the absolute most profound impact on me has been my connection to the spiritual. The spiritual is anything that removes what grows between our hearts and the present moment. It could be the face of a child, the look of a loved one, the realization of our impermanence as we watch a robin build it's nest. The spiritual is everywhere, waiting for us in all that we do. By connecting to it we connect to ourselves, and by connecting to ourselves we heal our very foundation, making ready for whatever the day brings.

Like Jake the dog, we become comfortable in our own skin.

Theresa

When Sleep Eludes Me

2012-04-04T09:14:00.001-05:00

Sleep never comes very easily for me, but some nights are just worse than others. I find that if I can keep my mind clear of stories (“What am I going to do? I can’t do this anymore! How will I function tomorrow? I’m never going to get any sleep…”) I do much better. Letting go of the pressure I put on myself, I often just fall asleep. And then there are nights like last night, where the normal inability to sleep is compounded by an upcoming event that is causing me to be anxious. Left unchecked, I can create the most miserable of nights!

This morning, after a cup of coffee and some moments of quiet, I have had time to think back on the drama of my sleep…or the lack thereof. In my daily reading, author Mark Nepo talked about the causes of why we hurt ourselves and those around us. There are obviously many causes, but this quote resonated deeply within me,

“For it is out of fear that we feel the need to isolate ourselves or to control others, and it is often in the act of elevating ourselves that we hurt one another, not to mention ourselves. When not afraid, when in a moment of peace, we feel quite a different need. We feel a sudden requirement to connect and belong to other living things, and it is then in an act of true embrace that we love one another.”

Last night, during the hours in which I should have been sleeping, I spent a lot of time in fear. Fear that created feelings of inadequacy, fear that created the desire to control certain situations in my life, fear that made my heart race and left me in the constant hum of panic. Fear that created an environment impossible for sleep and eventually gave me a very painful headache.

I can tell you, that in this picture, I was in a complete moment of peace. Nature does this to me. Whether I am standing in the ocean, walking in the forest or sitting at the edge of a field – I DO feel the sudden requirement to connect and belong, and this connection always creates intense moments of love for the world around me and all those in it.

What I fail to recognize in the moments when my mind is left unchecked is that those opportunities for peace are available to me EVEN within the darkest of nights. Even in those moments of restlessness and pain. Even when events are beyond my control! This morning, after reading the quote, I was finally able to let go of my fear. And in that letting go, I no longer feel inadequate; I no longer need to control the upcoming circumstances…I no longer feel threatened. Those that seemed against me now are the recipients of my desire to connect and to love.

How much better this feels! How much relief is mine in the letting go! How much better it is to love than to fear!!

Success will not always be mine. I’m sure that in the zone of half asleep and half awake, I will succumb to the craziness of my fears yet again. But it’s not about perfection, is it? It’s about learning from our mistakes, forgiving and loving. And this we can do at any moment we choose, in any space we find ourselves and with anyone.

Blessed moments of peace be yours.

22 Days...

2012-03-22T13:54:00.000-05:00

It's been 22 days since I last posted. I'm not really sure where the time has gone, but I can tell you there's been quite a bit that's filled up the space! As I lay in bed this morning thinking on what I wanted to write about, I decided that instead of planning things out I would just begin where we last left off - the day I found myself behind that speeding ambulance - Tuesday, February 28th. Where we go from here, at least as I type these words, remains a bit of a mystery! We'll see how this goes...

This picture was taken the very same day my mother was transported to the hospital. Coincidence? Not much. You see, about two months ago my husband set out on a mission. Every day on his way to work he must travel through the wonderful little river town of Stillwater, Minnesota. The bridge in this picture is the infamous Stillwater Lift Bridge, the object of much controversy due to its lovely historic value and the necessity of it's replacement. The mission? To park his car downtown each morning as he passes through on his way to work and climb the 160 stairs that run up the cliff to this vantage point...and take a picture. Rain or shine.

February 29, 2012

These are the stairs. One by one, each seven inches above the last, he climbs his way to the top. I don't really know what goes through his mind as he puts one foot in front of the other, but I can't help but think of Sisyphus as he rolls his stone up the mountain. If you are familiar with the Myth of Sisyphus by Albert Camus, he describes how the gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, only to have it roll back down from its own weight. What had begun as a sort of punishment, in the end proved to be the source of Sisyphus' joy. "The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy!"

February 29, 2012

A lot happened right before the above picture was taken. A lot happened before that day my mother found herself fighting for her life. On February 27th, 2012, at 12:56 in the afternoon, my first grand daughter, Adella Marie Baune was born into this beautiful world.

February 27, 2012

These are the feet of this little one so dear on the day of her birth.

February 27, 2012

This is her mother and father, in the moments after her arrival, in the holy space of bearing witness to the miracle of life. It is a day filled with moments I will never forget.

March 2, 2012

Just a few short days after Adella was born, we had our first snow day of the year. Quite different from the perpetual state of blizzard that we had the year before, this winter has been extremely calm. Nevertheless, Mr. Johnson made his way to the top and snapped his picture. This is one of my favorites.

March 4, 2012

They say in the Midwest, if you don't like the weather, just wait a minute. How true! This picture was taken out my kitchen window. It was 45 degrees this day and nothing but sun. Little did we know the beautiful days that were to come!

March 6, 2012

On Monday March 5th, after a long infusion day at the hospital, my husband drove me to my daughter and son-in-law's home to spend five days being Grandma! The picture above is of me sitting on the floor the morning of my first shift. There simply are no words to describe the sights, smells and sounds of a new baby. My heart so full, I could hardly keep the tears from drenching us both.

March 7, 2012

I almost posted this picture first. This is a picture of my father and mother visiting Adella in her home for the first time. From that ambulance ride only a week before, to this moment, the world seemed to turn upside down and spin backwards in-between. We just never know what the next second will bring, but when you find yourself in moments such as these - let gratefulness burst the seams of your heart.

March 11,2011

On Sunday, March 11th, we drove to Stillwater to run errands. Not wanting to pass up the opportunity of a beautiful day, we stopped so my husband could climb the stairs and take his picture. Little did I know that the picture of the day would be of me! This is the shot he snapped on his decent.

I would have loved to accompany him to his summit, but illness makes these endeavors simply out of the question. I will say though, that watching him made me so very happy. He's an interesting guy, this man I married. Quirky, eccentric and gifted with the absolute most bone dry sense of humor I have ever known - I cannot imagine one day without him. He is the most beautiful man I have ever known.

March 14, 2012

The average temperature for our area on March 14th is 45 degrees. This day it was 73! Within the next three days we would top out at a glorious 80!! You can see the ice on the river melting in this sun drenched morning shot.

March 17, 2012

I love Saturdays. On Friday night I composed a list a mile long of things that needed to be done. After morning coffee, some good reading, fiddling with a few stones and being serenaded by Mr. Johnson... we totally re-evaluated the nature of the list. It was a beautiful day.

March 17, 2012

This is a picture of my daughter Sara. She is the second part to a two part deal...her twin sister Emma. Both girls absolutely love to cook. On this Saturday Sara decided to make a double layer lemon raspberry meringue cake! It...was...heavenly!!

March 17, 2012

Picture perfect!

Another event worth mentioning is the decreasing of our household size by one. A happy/sad event, our daughter Anna moved out of our house and into her first home the beginning of this month. As is the case in any household where there are more children than bedrooms, this created quite the opportunity! The picture below is of the room our daughter Sara occupied prior to Anna moving out. The color, like the cake...raspberry!

THIS is the room now! Thanks to the painting handy work of both Emma and Sara, the aforementioned room went from raspberry to chocolate on March 17th!! We now, for the first time ever, have an official "spare bedroom"!!! I think the last time I lived in a home with a spare bedroom I might have been 17 and living at home with my parents. I find myself just sitting in this room in glorious amazement. Drawers and closet empty, this room is ready for company!

March 18, 2012

I swiped this picture of Sara off her facebook page. For so many reasons, it just makes me feel good. Finding ourselves in yet another 80 degree day, Emma and Sara decided to take to the road and walk down to the local BP gas station.

Since becoming sick, I find myself living much of my life as a spectator. I think this is a natural progression the older we get anyway, but being ill has sped the process along a bit. I don't really mind it though. Life is slower and the viewing comes easier and with a certain amount of wisdom that I didn't have in my younger or more healthier years.

There's been a lot to look at the past few weeks. A lot to watch.

Camus describes what he thinks Sisyphus looks like as he pushes the stone back up the hill, "one sees his face screwed up, the cheek against the stone, the shoulder bracing the clay covered mass, the foot wedging it, the fresh start with arms outstretched, the wholly human security of two clotted hands. At the very end of his effort measured by skyless space and time without depth, the purpose is achieved."

This is life.

"There is no sun without shadow, and it's essential to know the night."

The moment my mother held Adella was made sweeter by fact that she had taken that ambulance ride only seven days before. The gift of an 80 degree day was made warmer by the March blizzard that blew right before it. A Saturday with my husband was made all the more precious by the letting go of a list made the night before. A river fresh and flowing after a long and frozen winter. The end of one story so that another can begin.

This is life.

Some might think my husband ridiculous for climbing those stairs every morning. Just as some might pity poor Sisyphus as he rolls that stone up the hill yet one more time.

I imagine them both happy.

March 20, 2012

Peace,

Behind A Speeding Ambulance

2012-03-01T10:02:00.000-06:00

March clouds above our neighborhood.

Some time ago I read about the practice of looking up into the sky. My mind slips me as to where I read it or who even wrote it, but the concept has never left me. The writer was speaking to our ability to let go, live in the present moment and unattach from the things of this world. Looking up into the depth of the blue sky helps me to experience the infiniteness of our being – of all things. And in that infiniteness, the “nothingness” of all that is. In this experience there is no differentiation between me and this sky. We are one in the same.

And then there are the clouds. These clouds take many forms. They can gently move through, so slowly and peacefully that we don’t even know they are there except for the occasional shadow cast. Or, they can spread out across the sky in waves of energy and motion that take our breath away. I see the clouds as the good and bad that pass through our lives. For these formations come and go, reminding us of the impermanence and unpredictability of all things – of thoughts, of experiences, of the lives of those we love.

Yesterday, I found myself following an ambulance that was carrying my mother to a hospital that was more equipped for patients critically ill with cardiac conditions. If you look back at my facebook status from that morning, I had posted a prayer from the American Indian Chief Yellow Lark. The first stanza said this,

“Oh, Great Spirit,
whose voice I hear in the winds
and whose breath gives life to all the world, hear me.
I am small and weak.
I need your strength and wisdom.”

The morning had been difficult. Experiencing the onset of a painful flare, I had decided that the day would be dedicated to stillness – honoring the needs of my body. Little did I know that my mother would be fighting for her life or that my father, in the enormity of the stress and worry, would end up himself in the emergency room with a heart condition.

So there I was, behind a speeding ambulance, being blown about by the wind. I looked up into the sky – clouds rolling about from the storm that had kept my kids home from school that same morning – and it was as if those very clouds, that very wind, blew through the center of my being. It was the warmest, gentlest of winds – almost as if they were the winds of spring. It filled my lungs, and at that exact moment I was comforted by my own breath. Breathing in, breathing out. Breathing in, breathing out. Like the presence of a dear friend, my very own breath holding me, comforting me – reminding me that in all the storms of life, it does not leave me.

My hands relaxed as I let the ambulance drive out of sight. I was no longer speeding. I was no longer listening to the stories of my mind…I was still. I was honoring the needs of my body. It did not matter if I was lying on my couch in the comfort of my living room – unknowing of the events of the day, or if I was following an ambulance that was carrying my mother in the hopes of saving her life. I had found the space of the present moment; a sky blue and infinite. A peace beyond understanding.

The day was long and difficult. We cannot control the clouds. They will pass through all of our lives, without warning or care. Some days they will be full of beauty and some days they bring about the greatest of storms. We can frantically try to out run them or hopelessly grasp at them trying to capture the pictures we see in their billowing forms. Both endeavors leaving us exhausted in our suffering. Or….we can let the winds pass through us. Letting go, experiencing what is, and finding peace. The choice is ours.

Yesterday, for whatever reason – I was blessed with letting go. Comforted by my breath, comforted by the friends and family that surrounded me – I found peace. As the clouds blow in and out of your life may you look beyond the formations to the infinite sky above and find the space of the present moment. It is always there waiting for you.

Clare's Well...spoken from the heart.

2012-02-24T17:10:00.000-06:00

Self Portrait Clare's Well, February 2012

Two weeks ago today, I was on the second day of my visit to Clare's Well. I had very good intentions of writing about my trip as soon as I returned, but to be honest, it's been more difficult than I had anticipated. Have you ever had an experience so moving that you hesitate to even open your mouth about it? The mere thought of trying to grasp all that it encompasses is completely overwhelming, and the only honorable thing to do seems to be silence. I flipped back and forth between writing a summation of my time in Annnandale and simply posting all three hundred of my pictures with the hope that you would just "get it". But neither seemed right. Most importantly...I wanted what came from all of this to be honest. It seemed like that was gift given over the course of the four days. This accounting should be authentic.

I'll warn you - this is going to be long. It is also going to be very real. I apologize right now, if in my attempt to let you into one of the most personal parts of me, I in any way offend - I am truly sorry. This is just me, in all of my humanness, sifting through and plucking away at the pieces of what makes up just one simple women in a very big and beautiful world.

I've decided to type word for word, the journal entries I made while on this trip. No changes, no omissions. I can guarantee you, that if I would have any idea that my journaling would ultimately end up on this blog...well, I probably would not have journalled at all! It just seems, that after reading over things, it's the most honest thing to do. My hope? My hope is that in my struggle, you find your struggle. In my pain, you find your pain. In my joy, you find your joy. In my beauty, you find your beauty. And in the end, you come to realize your own grace, your own purity, your own sacredness...
The Holiness within.

A few pictures to begin...

Painting and sketching supplies.

The new porch recently added on to the hermitage - heated floor and all!
This is also where the compost toilet is located, through the closed door to the right.

The House of Clare. The smallest of the three hermitages, this holds a special place in my heart.
I was happy to be here again.

Many hours spent sitting in this space.

A small kitchen for snacks. Meals are served up at the farm house.
Wonderfully cooked, homemade and organic - there is nothing like the food at Clare's Well.

Jeana, my dearest friend and only the second person that I have ever shared this space with.
She came for lunch the first day. A perfect way to begin my stay.

Flowers brought by Jeana.

2/10/12 Clare’s Well

The day before I got here I saw an eagle. I was laying down in the living room. Feeling very sick from not taking my medication – medication that my mail order pharmacy failed to deliver. It’s my chemo. This “glitch” made me feel very sick as well as unsure as to if my trip would even be possible. As I lay there, half asleep, contemplating this and certain issues with my family – I open my eyes to the speck of an eagle in the corner of the window. The sun illuminating its head. In all the universe – my speck of a window.

Affirmation.

Having my usual first day. Maybe a bit more difficult because I am sick. Having a hard time adjusting. Missing Aleela so much. Even writing the words makes me cry. Maybe I just need to cry. Missing Dave. Missing the girls. Missing the dogs, the cat. NOT usually the case. The fatigue, sinus pressure, headache making it difficult to concentrate. Hard to write. Hard to envision being creative. So that makes me sad.

5:20pm

Supper soon. Went out for a walk around 4:00 or so. Very cold and windy. Below zero windchill. Brought Daniel’s snowpants. Toasy warm. There were men working on the footbridge replacing old boards. Easier job when the creek is frozen. I wasn’t afraid of the woods. Maybe because the winter makes them transparent. Maybe because the men were there. Took pictures. Then the camera froze up. That’s okay, fingers not working. Wanted to walk out across the lake but too chicken. Some things never change. Maybe I’ll look at the pictures before I go. Oh, as I was napping today I realized I forgot the Ipad. I really wanted the computer to write, but gave it up for Dave. Now I don’t even have the Ipad. I’m thinking it was not meant to be – as “panicky” as it made me – a bit angry even. The hand it is! Maybe this trip was supposed to be about me.

The view from my hermitage.

Walking into the woods.

The footbridge leading into the woods.

Transparency.

The curve and beauty of age.

The House of Clare to the left of the barn.

Delicate.

Walking back to the House of Clare...home.

7:50pm

Back from supper. Fire's out. COLD. Took about 20 minutes to get it going again. I love the smell of wood burning. I miss that smell in the house. Supper: chicken and dumplings, potatoes, carrots, celery. Yum. Beets, broccoli salad (with sunflower seeds) homemade bread and applebutter, brownies and ice cream. Met Ellen – neighbor of 60 years. Sad. Farmers wife. Husband is in memory care. She’s moving to an apartment to be closer to him. Nice lady – typical old farmers wife. Very active in her church. Jan is not here this week. She’s on “retreat”. Her neice - mother of 4 ages 16 to 6 – single – just had an aortic aneurism. It does not sound good. There is so much pain in this world. So much pain.

I’m thinking that tonight will end early. Sinuses are really bad, teeth hurt, head hurts, body aches, neck is just not moving. Pajamas, bed, read…sleep. Tomorrow is a new day.

2/11/12

Slept broken, but well. Went to bed at 9pm and was up every 2-3 hours. Had to completely restart the fire around 3. Had one of those “real” dreams were I could not move. Thought there was a cat in bed with me. Maybe Jenni. The room looked completely “as is”. Just could not get my arm over to the lamp.

Got out of bed at 8. Can barely move. Body moaning. Added wood to the fire. Made Coffee. Swept. Started the “sacred dirt” on fire. Cleansed the room. So simple, it burned just right. Re-arranged my alter so that it felt right. Lit the candle. Read:

“I have just three things to teach:

Simplicity, patience, compassion.

These are your greatest treasures.

Simple in actions and in thoughts, you return to the Source of all Being.” Lau-tzu

Havan Samagri..."sacred dirt."

A lifetime of treasures. Stones filled with the the oldest souls of this earth...

A few old favorites and a few "in progress".

Homemade granola, fruit, yogurt and organic coffee...heaven.

I truly am drawn more and more to the simple. I long for it. Ache really. So much so that I have to be careful it does not keep me in the future. Away from what I have right now. I am trying to learn what it means to take that longing and give release to it in the present moment. I don’t have to wait. It’s difficult with a family. There are so many other lives to consider. Lau capitalized the word Being. When I saw the eagle before I came I felt a very strong affirmation of the Source. I told Dave on the ride here that religion is mankind’s attempt at finding solid ground. Seems true for all cultures. “We” all feel the Source. The Being. The Source of ALL Being. In our humanity we try desperately to “pin it down”. That’s our tendency. I don’t believe that’s our nature. Tendencies often times come out of fear or ignorance. I don’t believe the Source is to be understood. In our limitedness, it can only be experienced. Accepted for what is. We do not have to label it. When we label something we begin to think we know the truth of it. “This is an Apple.” Done. “I’m not sure what this is…” Open! To all possibilities. Like Tolle says, when we think we know the truth, we stop looking. We would not know the truth if it showed up at our own front door.

I want to live a life present in the moment and open to all possibilities. Simple in actions and thoughts.

Today will be about being simple.

Home sweet home.

A friendly hello!

Some scientists are led to the undeniable truth that God exists.

Some scientists are led to the undeniable truth that God does not exist.

The truth is to be found in both scientists.

Looking in.

A copy of a painting/poem I made for Sister Agnes before she died.

2/12/12

Sunday Morning. Beautiful, beautiful sunrise. Only a breath of wind. It will be a good day. Slept better last night. Only got up once or twice , but was sleeping very soundly. No fear. Pain started about 3am. Very difficult early morning. Could not get comfortable. Meds and heating pad would not even touch it. I think my massage yesterday caused some trouble. Treggor may not be my thing…or at least my joints don’t think so. I liked it, for the most part.

I let the fire go out in the night. I stoked it up WAY too much before bed and had to get up a few times and open the window. Fell asleep with it wide open – below zero. Crazy. Woke up to close it and it still was pretty warm in here.

Homemade poppy seed bread...a delightful addition!

Out of bed at 7am. Made fire. Swept. Made bed. Made coffee. Read my 4 affirmations. First I lit the candle and spread sacred dirt smoke all over the room. First time this felt completely natural. Without thought or doubt. I felt connected to Tanuj and Moon – to all humanity. Even the Catholics…ha! Found a new book up at the house – earth Prayers. Talked about how our prayer to the Sun (or whatever) is not about what it does to the Sun, but what it does to me. I can feel myself moving away from the guilt and responsibility of religion. In the middle of my prayers I had to poop. In the past, I would have felt guilty about that. Not doing it right…again! Not having the strength to force myself in some sort of “martyr-like” fashion. There is no martyrdom in Buddhist philosophy/thought. Loving self is the greatest/first good. I felt that this morning. Taking care of my needs was part of my meditation. I felt as if I was taking care of one of my children. That the interruption and returning was ALL GOOD. Hard to explain.

I hope I remember.

Me...completely and utterly content.

I listened to Jack Kornfield and another lady last night. Tapes by Sounds True from up at the house (these are just the greatest nuns ever). I really need to listen over and over again. They are so good. But one of the things that resonated with me was this idea of naming things when they arrive. It finally meant something to me. If I had any advice to give, it would be – Just try it! I’ve heard this many times before, but never really practiced it until recently. It’s quite amazing how just naming something helps it to pass. “That’s an itch.” “That’s my back hurting.” “That’s uncomfortableness.” “That’s hunger.” It’s crazy! Like when you were a kid and you tell your mom that you hurt your knee. If she does not acknowledge it you feel like it’s going to hurt forever. You sit alone weeping about how you think you’re gonna die. But if she says, “Oh, I bet that really hurt!” and then kisses it…well then, off you run! All better! This is how we care for ourselves. Like a child.

Simply amazing.

The back side of the wellness center.

Inside warms a host of chickens, a not so sociable cat and a momma goat.

Ah ha! There are TWO of YOU!
Inside the front porch of the main house. That's as far as they get!

“We are the only living thing that upon going one direction, wishes we had gone another.” I have to think about this one for a bit.

11:30am

Sitting on my front step in the sunshine, listening to the birds. They are just chirping and calling like crazy! Spring is so close. I ran inside to get my journal as thoughts just keep pouring into my mind.

Last night at supper we read these beautiful “Grace” cards. All very feminine. Written from the perspective of women, but also as Mother/Creator. I felt sorry for the lone husband. Wondered if it made him feel at all like he was a “visitor” in this women’s world here at the Well. Ran into the same couple in the Wellness Center this morning. Had the same thought. Now, sitting here, I see them walking up the hill together, towards Francis, where they are staying. I wondered again – does he feel uncomfortable in this women space. And then I thought of Carol – making the statement that we need to “get the men here”. So I then wondered if they would change anything to make it more “man friendly”??? AND THEN - I was blown over with this feeling of “All of Time” - and the patriarchal foundation of almost every culture. And I am filled with love and admiration and pride…and sadness for women. How they have survived. Continued to be the carriers of faith and tradition and ritual throughout generations despite our exclusion. Things are changing slowly. Adding another, more beautiful layer to the earth takes time.

I don’t think anything should be different from how it is right now – constantly changing. I think this direction is good. Where the Well is at in this moment is exactly where it should be. The farmer ladies just arrived back from Mass.

Pictures from inside the wellness center. A warm and inviting, very peaceful place to sit for reflection.

Looking out from inside the sauna. Of course, it was NOT on!
Lupus and heat are not a good match!

Sister Agnes, you are dearly missed.

Sunday evening meal in my hermitage. Leftovers never tasted so good.

I decided to make some very small bookmarks and hide them
in some of the books in the House of Clare.

This one is maybe twice the size of a postage stamp.

2/13/12

Monday. Final Day.

“I don’t need another mother in my head.” Moving away, being distracted, naming it, moving back, being distracted, naming it, moving back, being distracted, acting…not acting…moving back, All without guilt. Because being true to what IS is what is most Holy. Going with the flow of Nature, of the Universe, of all that IS is the right thing to do.

Can you imagine what the world would look like if the nuthatch looked at the woodpecker and “gave it a shot”. Everyone has their nature – what they do, what they are meant to do – because of who they are as individuals. “Humankind is the only living being that goes in one direction and wishes it had gone another.” We must be like the nuthatch. Waiting its turn, hopping down the tree from branch to branch, grabbing its seed and flying off. Or, the woodpecker, who pecks his way through life. Never wishing, wanting, hoping, trying to be the nuthatch.

You know what your true nature is because it is always there with you. Uncover it! Peel off the layers of fear, doubt, longing, inadequacy…find what kind of bird you are and just BE. What clothes do I like? What food do I like? What does my art look like? What words do I write? What books do I read? What places do I want to visit? How do I like to spend my time… Be careful though – seeing our true nature is difficult. Always question why.

The morning is floating by like clouds on a Fall day. When I try to hold them, they disappear.

I wanted to dedicate some of my quiet time to Sara, one of my twins. So I decided to paint her.
Still quite unfinished, I decided to give a "sneak peek"!
There are very few times that my hands work well enough to do this type of work,
but lucky for me - I found a few hours where things seemed to cooperate.

The view from my porch.

My chair looking out the porch windows.

Fun work. The rules when painting in this book are...NO RULES - MISTAKES WELCOME

My very first day I was greeted by a hawk flying from right to left over the lake.

My very last day I was greeted by a hawk flying from left to right over the lake.

A snapshot of my journal.
This is the tree that held the bird feeder - which was right outside my front window.
I quite often sketch things so I don't forget.

Moving slowly. Paint. Pack. Paint. Pack. Slowly put jewelry back on. Wedding ring. Friend’s bracelet. Medical ID bracelet. (last)

The hermitage is clean, journal written in…4:05. Dave will be here at 5 for supper up at the house. Front porch painting is done for now.

It’s been a good visit.

A reminder of the Holiness within.

If you've made it all the way to the end...thank you for sharing in the wanderings of my heart. Without knowing really what to do, I was sure of one thing - I wanted you to be a part of it. With every thought, with every frame of beauty, with every awakened moment - I longed for your knowing of these things. So much so, that at times I felt like weeping for the hope of it. There is so much suffering in this world - for sure. But I promise you this...there is infinite beauty, and it originates in you.

It's All Juicy Stuff!

2012-02-21T09:16:00.001-06:00

Photo by David Ralph Johnson

Pema Chodron, in her book Start Where You Are, has a chapter entitled – Abandon Any Hope of Fruition. It touches on the subject of hope, and how when it’s misused can become an obstacle to living in the present moment. The understanding is that as long as we are continually wishing or “hoping” for things to change, they never will. As long as we have an orientation toward the future, we can never just relax and enjoy what we already have. The unspoken deal we make with ourselves is that once we “get there” - then we will be happy. The problem is…we never arrive.

“One of our deepest habitual patterns that we have is to feel that we are never good enough. We think back to the past a lot, which maybe was better than now, or perhaps worse. We also think ahead quite a bit to the future – which we may fear – always holding out our hope that in might be a little bit better thank now. Even if now is going really well – we have good health and we’ve met the person of our dreams, or we just had a child or got the job we wanted – nevertheless there’s a deep tendency always to think about how it’s going to be later. We don’t quite give ourselves full credit for who we are in the present moment.”

By letting go of our hope of “fruition” we give up the idea that at some future time we will feel good. Instead, we enter into an unconditional relationship with ourselves, having an open heart and an open mind to whatever is – and whatever “is”, is what’s right here, right now.

There is often a misunderstanding in the teachings of Buddhism. The Buddha is not someone to be worshipped. Buddha simply means “awake”. When talking about the “Buddha in you”, one is simply talking about our inherent nature – or Buddha nature – and what that implies is that everything you need, you already have! By loving ourselves unconditionally, we slowly uncover or awaken what is already there, instead of shielding it, protecting it or keeping it buried out of fear.

Being afraid, feeling angry, feeling impatient, feeling jealous, feeling depressed – these are all part of who we are. They are as much a part of our nature as joy and compassion are. Entering into an unconditional relationship with ourselves means that we agree to no longer run from ourselves. Because in reality, no matter how hard we try – wherever we go, there we are! The beauty of this for me is that once we understand this, there is no more categorizing my feelings into “right” and “wrong”. This leaves no room for guilt – and we can all use a little less of that in our days! Our feelings are simply that - just our feelings.

The dictionary states that the meaning of fruition is “The enjoyment of something attained or realized. The state of bearing fruit.” Unlike the beautiful fruit in the photo my husband took this weekend, there is no waiting for the perfect moment of ripening within us. Who we are in this moment is exactly who we are supposed to be – whether afraid, insecure, jealous, lonely, confident, joyful or compassionate –

“It’s all juicy stuff!”

Returning To The Source

2012-02-15T09:06:00.000-06:00

My feet at Clare's Well, February 12, 2012

(The following is a post that I put on the One Moment One Life Facebook page this morning. It is the first post upon my returning from four days at Clare's Well. There is MUCH in my head to write about and over 380 pictures that I want to eventually sort through and glean out the ones to include in those writings. For now, I enter back into things slowly - hoping to not loose touch with the lessons learned.)

I never know what my time at Clare’s Well will bring to me. I always go with a certain openness, ready to accept whatever “is” when I am there. This is a lesson learned from the painful experience of attaching to an idea of how things should be and feeling the loss and disappointment of never really “arriving”.

My first morning there I realized something. In the past I have felt a distinction between being in this holy space and not being in this holy space. As if, upon stepping on the property or walking into my hermitage, I was entering a place of sacredness. And there is most definitely truth to this. The ground and the beautiful old women that keep it have made it so. But what became very obvious to me was that this feeling has much more to do with me and the condition of my mind than where I am at. As I was sitting in my chair the first morning I wrote this down in my journal, “There is a Holiness here because “I” am here. I keep coming back to this special place because what is really happening is that I keep coming back to “me”.

One of the ideas behind Clare’s Well is returning to the Simple. A place of great stillness where you let go of all the demands and “white noise” of the world and sit in the open space of your mind. I am always amazed at how everything begins to look so beautiful to me as I slowly let go. How thoughts and creativity begin to flow in the unrestricted space. How Nature’s voice seems so clear.

I believe, when we return to the Simple, we return to the Source of all Being. And that Source resides within all of us. It is not something we step onto or arrive at. The holiness is the space we create in our minds. An uncovering of what’s already there – of what has never left us. This is all but impossible when we fill our minds with thought and live in a perpetual state of planning for the next moment, which is really how most of us live out our day. We set our clocks to get up early so we can arrive to work on time. We eat our breakfast quickly in order to not be late. Or maybe we don’t eat our breakfast so that next week we can weigh less. We plan our meetings, plan our suppers, plan our evenings, plan our television time and set our clocks for the appropriate time to wake up. All necessary…but all activities to ensure an appropriate future moment that never seems to arrive.

Returning to the Simple returns us to the Source. And the Source is the only place where there is Life. If we don’t make time in our days to find the simple, we fail to find Life.

I took this picture as I lay in the hammock on the front porch of my hermitage. I did a lot of this laying around business. And as good and necessary as it is for this time to come to an end and for me to come home, I am doing so very slowly. Yesterday I remained unattached from the internet and just listened to my girls as they all found time to catch me up on the events of the last five days. It felt really good. In fact, I’m spending this slow integration back into the norm contemplating the extent of my involvement with the “technological world” and social media in general. It most definitely is not what I would consider the “simple” in my life.

So, I leave you with this picture of my feet, in hopes that it reminds you to care for yourself. To feel your own longing to return to the Source, and to listen to that ache with a compassion that leads to the act of loving yourself.

Blessed be your journey.

When The Train Hits

2012-02-08T12:23:00.000-06:00

I35W Bridge re-build, after the collapse. Photo by David Ralph Johnson

I was reading An Imperfect Life by Jodi Hills yesterday. It’s a wonderful little book given to me by my oldest daughter for my birthday – which happened to be yesterday as well. Small in size, it only measures about five inches in both directions; enormous in courage, it measures to infinity and beyond in truth and vulnerability.

“It’s been a while since I’ve been hit by a train,

so forgive me if I’m not sure what to do,

who to call,

or how to act.

I just can’t believe I didn’t hear the whistle,

or see the flashing lights

before I got knocked off the road…

I need to sit here for a bit and catch my breath.

I’m not sure of a lot right now,

but I do know I’m not going to stay with the wreckage,

or carry it with me…

I am going to catch my breath,

and walk on.”

We all have times in our lives when we feel as though we’ve been hit by a train. When the news comes and takes with it every molecule of breath from our lungs. When the world goes silent, and there’s a space that fills our being that is so big, so empty, so void of everything we’ve ever known – all we can do is fall to the ground in its vacuum.

Trains come in all shapes and sizes. Some merely knock us off the track and some change our lives forever. In every case, we have a choice. Not in the size of the train or when it comes, as pain is an inevitable fact of this life, but in our response to our pain, which ultimately determines the duration of our suffering.

I love the honesty of the moment spoken here. “So forgive me if I’m not sure what to do, who to call, or how to act.” I just can’t believe I didn’t see this coming! These are real feelings that speak openly to our vulnerability. No justification, no self-degradation, no blaming, no story line…just the facts.

When we allow ourselves this exposed confession, we keep the space open. We don’t rush to fill it with added debris. We simply sit for a bit until we can catch our breath. It’s only then, in the absence of drama and chaos that we can think in the clarity of reality. That we can proclaim in the midst of our tragedy, “I’m not sure of a lot right now, but I do know I’m not going to stay with the wreckage, or carry it with me…

I’m going to catch my breath,

and walk on.”

Peace,

Looking For Solid Ground

2012-02-03T14:11:00.000-06:00

David Johnson, Star Prairie Gallery

Sometimes I just have to laugh at myself. I literally just sit here and laugh. It’s usually times when I am working so hard at finding something or figuring something out, only to realize it is either right in front of my face or has been blinking like a neon “sign” the entire time. This has been my week.

In defense of myself, it has been a rough week. Last weekend, for whatever reason, my body decided to succumb to yet another virus. Barely over the holiday flu we all got in December, I acquired a nasty sinus infection, which just seems to magnify all the other “issues” I battle on a daily basis. Then on top of things, it was already a busy week in regards to medical appointments. One of which was my infusion, scheduled for Tuesday of this week. Upon finding out that I was sick again, they promptly canceled my infusion and set up more appointments for me to get “checked out”. Ugh. So, to make a long story even longer (it seems), it looks to be just a virus, no lung involvement and not much new on the autoimmune front; an echo cardiogram stress test next week (just to follow up on things), a new medication for some skin issues I am having and a rescheduled IVIg appointment for next Monday. Done.

On an emotional level though, this week has felt like one of those dreams where no matter how fast you run you just can’t seem to get anywhere, or no matter how many times you dial the phone you just keep messing up…or, like the dream I had last night where I gave birth to two African American twin boys and forgot them at the hospital (I’m still trying to figure it out) – I just keep trying and for the life of me…it’s not working. Trying to write…not working. Trying to cook…not working. Trying to paint….not working. Trying to clean up the house…not working. Trying to help the kids…not working. Trying to read…not working. Trying to regroup…not working. Trying to eat healthy…not working. Trying to stop picking at my skin…not working. Trying to find some quiet space….not working. Trying to make time so I can figure out what the hell is going on…not working. Trying to schedule time away so that I can find my balance…not working. Trying meditate so I can figure out why nothing is working…not...working.

My first sign came when reading Oriah’s wonderful post on Wednesday entitled “Getting Unhooked”. She has been going through some personal challenges as of late that lead to her to comment to a friend, “I feel like I can’t quite get my feet on the ground. Every time I think I’m on solid ground, it disappears from beneath me.” (Hum…sounds familiar). She then goes on to talk about her experience of taking one of Pema Chodron’s books off her shelf (When Things Fall Apart) and randomly opening the book to this piece:

“We want to have some reliable, comfortable ground under our feet, but we’ve tried a thousand ways to hide and a thousand ways to tie up all the loose ends, and the ground just keeps moving under us. Trying to get lasting security teaches us a lot, because if we never try to do it, we never notice that it can’t be done. Turning our minds toward the dharma speeds up the process of discover. At every turn we realize once again that it’s completely hopeless- we can’t get any ground under our feet.”

Just think about it…I’ll explain more later.

Second sign. In my reading this week I came upon a quote by Santideva, an 8^th-century Buddhist scholar. The quote read, “We who are like senseless children shrink from suffering, but love its causes.”

Read that one a few times.

Third sign. Someone sent me a message this week on my facebook page suggesting that I listen to Pema Chodron’s interview by BillMoyer on PBS, done in 2008. It is in six, nine minute segments – completely manageable, so I decided to give it a go. Committing to only watching the first nine minutes, I quickly abandoned the next hour of my life and watched the entire interview. Simply amazing. If you have time, I recommend it with the sincerest hopes that you will be blessed as I was.

I've read many of Pema’s books, but this interview was a view into the essence of Pema Chodron that I had never really seen – or at least been ready to see. She talked about how no one really wants to suffer, yet our means by which we try to achieve our happiness or contentment most often seem to only escalate our suffering. For example, we yell when we are angry. We think this will make us feel better (that’s why we do it…for the release), but in the end, it only makes things worse. Our means of going about getting happy are not in sync with our desire to not suffer.

To give example of this, she tells the story of working on a project that she was very excited about. She was writing an article that was taking an unusually long time to write. The adrenalin from the excitement she felt was allowing her to devote more hours to the project that what was sensible. She eventually began to get physically sick. When she began to realize the cycle she was in, she stopped and asked herself, “Why am I doing this?” Her first response, “I’m doing this because I equate it with satisfaction. I’ll finish the article and it will feel good to be finished. ” The dialogue continued. “So if I start writing again - right now, will I feel better?” She sat there and thought a bit. “No, I won’t, because my health is starting to go.” “So, why are you doing it?”At this point, instead of answering right back, she sat there until the real answer came out, “Because I WANT TO.” She was doing it for the imagined satisfaction. Her desire for satisfaction was not in sync with her methods of attaining it.

So, how does this all make sense in my world? This was the deal. When my week began to fall apart, I did two things. One, I imagined what I thought would bring me satisfaction. Two, when it failed to work (because my desire for satisfaction was not in sync with my methods of attaining it), I made the incorrect assumption that what I needed to do was to get my shit together and find solid ground. Even if it was in the most well meaning and mindfully zen way, it was still grasping at something that simply does not exist. There is no such thing as solid ground. Everything is impermanent. Plans get canceled, meditation becomes distracted, positive thinking techniques fall short, time gets interrupted, people get sick, promises get broken, relationships fail...Life. Is. Groundless.

What if, instead of running around pretending there is ground when there isn’t, we could just learn to not be afraid of groundlessness, not be afraid of insecurity and uncertainty? As Pema says, “it would be a calling on an inner strength that would allow us to be open and free and loving and compassionate in any situation.” And I would add…especially with ourselves. The Buddha gives the analogy of being barefoot and walking across blazing hot sand and cut glass. Or in a field with thorns. And your feet are bare and it is terribly painful. You say to yourself, “This is really hurting; this is terrible, the glass is too sharp, it’s too painful for me, it’s too hot to stay here.” Then you think, “Ah ha! I have an idea! I’m going to cover the ground with leather! Then it won’t hurt my feet anymore!” That’s like saying, “I’m going to get rid of this person in my life that causes me pain, I’m going to get rid of loud noises and bugs and barking dogs and things that interrupt me and schedules and ticking clocks and…everything that causes me pain…and THEN I will be happy and content!” Sounds ridiculous, but that’s exactly what I do…what we do! If we could just cover everything with leather we wouldn’t be hurting our feet anymore! Or…we could simply wrap the leather around our feet...like shoes. So the analogy is, if you work with your mind instead of trying to change everything on the outside, then contentment or peace can be possible no matter what the situation.

Trying to find comfortable, reliable solid ground in this world is an effort that will undoubtedly leave you unsatisfied and exhausted. It sure did me. Learning how to make space and find rest within your our own mind, letting go of attachments and illusions of control, understanding that life is less about getting rid of all the bad stuff and more about wearing a good pair of leather shoes...well, this works.

Now, if I can just remember!