D.Day

Winter Wonderland

noreply@blogger.com (Anonymous) — Mon, 17 Nov 2014 14:34:00 +0000

Yesterday it snowed most of the afternoon and into the night. What a beautiful thing to awaken to see!

Fundraiser is Now Live!

noreply@blogger.com (Anonymous) — Sun, 26 Oct 2014 22:03:00 +0000

The fundraiser for my brain surgery on December 17th is now live. Please donate if you can, and share even if you do not have the funds to donate. You never know who may read this and be able to help me.

To Exhibit

noreply@blogger.com (Anonymous) — Wed, 22 Oct 2014 22:57:00 +0000

"12 Foreign Objects Removed from Pepe" by Dan Zettwoch

I have this art print, one of my faves, that depicts the autopsy of Pepe, Pablo Escobar's escaped pet hippo. Initially, this print was on the wall beside my bed, and now it's hanging beside my TV. I lie here now looking at this poster, as I have a million times before, and it's like a koan for me. Ya know, those Japanese proverbs that hold some big secret to the meaning of life if you ponder them long enough. I look at all the junk found in Pepe, alongside his brain, intestines, bones, and other bits and pieces. Some days, I think of the junk in my life that will be around for analysis when I'm gone. The embarrassingly large collection of scarves, my two adoring cats, the pile of movies that depict my cheesy taste for musicals and romcoms, the paper grocery bag overflowing with medical bills from just this year, the nicknacks that only hold meaning for me...

Other days, like today, I think of how I've shared not only images that offer a glimpse into my body, like Pepe's autopsy, but also the stories that surround these images. Pieces of my life that litter the World Wide Web, much like those 12 foreign objects removed from Pepe. I stare at this print of Pepe with about as much understanding behind those objects, as anyone who follows me online.

The realization, that comes when I allow my mind to go there, is unsettling. Pepe had no choice, obviously, it's an autopsy. Dead as a doornail. Poor, Pepe. Well, and he's fictitious, but that's besides the point. So, why do I share all of this with all y'all? For many reasons really, but a big one is that it's therapeutic for me to get it out of my head. The other primary reason is that there needs to be more awareness, people need to know about Chiari Malformation, and how it effects the lives of the people who have it. I'm a living, breathing microcosm, and if my story helps even one person understand, it's totally worth it. In both circumstances, secrecy creates problems that multiple with time, much like Pablo Escobar's real-life hippos.

What does the brain stem do?

One of the primary issues of Chiari Malformation is brain stem compression. Really, it's inevitable when your cerebellar tonsils are being forced down below the skull. But, what does the brain stem do? If you do a simple Google search, the Machine will tell you,

"The brain stem sits beneath the cerebrum and in front of the cerebellum. It connects the rest of the brain to the spinal cord, which runs down your neck and back. The brain stem is in charge of all the functions your body needs to stay alive, like breathing air, digesting food, and circulating blood."

The article goes on to say, "Part of the brain stem's job is to control your involuntary muscles — the ones that work automatically, without you even thinking about it. There are involuntary muscles in the heart and stomach, and it's the brain stem that tells your heart to pump more blood when you're biking or your stomach to start digesting your lunch. The brain stem also sorts through the millions of messages that the brain and the rest of the body send back and forth."(kidshealth.org)

So, the brain stem, controls all of those things we don't normally think about, the automatic, or "autonomic," functions we take for granted. Now, imagine if that brain stem were being compressed to the point where your body's natural automatic functions began to malfunction and stop ... What would you do? Remember, you need these functions "to stay alive."

POTS, or Postural Orthostatic Tachycardia
Syndrome, is a form of Dysautonomia

Suddenly, you find that chewing becomes an issue, because you have trouble keeping the food in your mouth, and not sliding down your throat. Without a properly functioning gag reflex you choke, so you start eating small things that are easy to swallow without incident, like rice, hummus, cereal, oatmeal, etc., because swallowing in and of itself starts to be something you have trouble controlling too. Once the food is down your throat your stomach has problems digesting, because that's an automatic function, and you can forget proper bowel movements, because your intestines work automatically as well.

If that weren't bad enough your bladder goes crazy, some days over acting, some days barely releasing. You may have difficulty blinking and breathing, and begin to have heart issues, as your brain stem miscommunicates the signals that tell your heart beat and blood pressure to function properly. This is called "Dysautonomia."

Could you live with this? Live knowing that depending on the state of your brain any particular moment, you may not be able to do the most basic things we assume will always continue without pause, or could simply not wake up one morning, because you stopped breathing...

To some degree this has always been my life. I've dealt with a varying set of symptoms from brain stem compression nearly as long as I can remember. It should be old news to me, right? It is and it isn't. It is, to the extent that I've learned to expect anything could happen and not take any moment for granted. Life is a gift, not something we're entitled to, so we have to treasure it. It isn't, in that the symptoms change in their intensity and regularity. I can never count on things always malfunctioning in the same way, so I can't just get used to something. It's a constant state of being unbalanced and ill at ease with your very presence in this world. Very little physically feels "right."

Since 2009, my symptoms have progressively worsened, and in the last year I have come to deal with black outs, tachycardia, memory loss, and several other symptoms daily that used to be rare enough in a year for me to count them on one hand.

My friend Richard and I at Bat Cave, North Carolina.

This past weekend, I went to get my answers from my Chiari specialist in North Carolina. After 7 months of fighting to get to this point, the time had come (see previous blog posts relating to this here). As soon as the plane left the ground I blacked out from the quick assent that nearly halted my breathing. I was sick for a couple of hours after landing, but my strength returned. But, then we took off for the mountains, and I was hit with an excruciating headache from the elevation. The next day it took me hours to get out of bed, as my hands and arms refused to work. Every drive we took this weekend resulted in increased pressure in my head and difficulty breathing. Sunday, our drive up into the mountains and back down to the hotel left me flattened for hours.

This was the hard part, but it was also something I was prepared for, and had accepted as my reality. I didn't panic, beat myself up over it, cry, or attach anything negative to these physical experiences, because that's all they are, experiences. They have no bearing on my value as a person, and I know I can't control these things. Also, I had an amazingly wonderful friend with me who didn't make me feel like a freak, and he helped me out when he could. Having that support and care from someone I trust allowed me to feel safe and to enjoy the trip. It would t have been possible without him.

OMG, Brain Surgery

Kind of how I feel about this whole health thing (and it keeps with the hippo theme)

So, if I can spin this positively, have friends and family to support me, etc. why would I risk invasive brain surgery? The answer is simple, remember our friend Pepe? I don't want to end up autopsied for cause of death, because I didn't take this seriously, AND, I don't want to leave this until it gets to the point where other parts of my body are deteriorating, and then I'm really screwed.

Dr. R went over all my tests Monday, and praise be, only my brain is seriously compromised at this point in time. Yes, I know it's MY BRAIN, but many, many people also have severe spinal problems, with disk degeneration that can only be fixed by fusing vertebrae together and/or inserting artificial disks, and a narrowing spinal canal that requires surgical intervention. My disk degeneration and cervical stenosis are minimal at this point in time, and I do not have a syrinx (or a pocket of fluid in my spine from high pressure on the spinal canal).

I'm feeling like Pepe here y'all

If my brain stem compression is addressed it is very possible many of the symptoms that hold me in their grasp will lose their hold on me with time. AND, removing the pressure from my spine will slow the current deterioration that has begun. It is possible that I may only have to have this single surgery, or I may need additional surgeries years down the road as the intracranial pressure continues and my spine worsens, but right now I have the option to reclaim my life, and an experienced surgeon who knows how to deal with these issues.

I'm thankful that he didn't tell me anything I didn't already know. I had been terrified that I'd go in, and learn about a host of problems I needed to address immediately. I had envisioned coming home in some huge honking neck brace that would proclaim to the world how screwed up my body is, and all semblance of boundaries would be out the window. The big surprise is that I'm not as bad off as we had feared. Dr. R is confident that removing the tonsils and a portion of the skull, and patching with duraplasty will give me enough room back there. He said in the future he will need to monitor the retroflexed odontoid and intracranial hypertension, but for now just the decompression, and even that is minimal in the scheme of things. Many people have a laminectomy of the C1 and C2 vertebrae, but all he is recommending is a suboccipital craniectomy. That's right, just brain surgery. It sounds silly, but I was afraid of so many complications.

This video is a wonderful example of how the surgery is performed.
Remember, there will not be a laminectomy, so disregard that portion.

For the Dysautonomia he wants me to use Digoxin, a form of digitalis. He does want my local PCP to prescribe it, since it will need to be monitored with regular blood work. He said it will do what the beta blockers are supposed to do without any of the troublesome side effects they have. I've already tried Propranolol, but it made me so dizzy I couldn't function. I was also on a calcium blocker, Verapamil, but it didn't make any difference.

He said to remain on the Diamox if I felt it was helping, but I had permission to experiment
with it. Diamox is the medication I take to help with the progressive hydrocephalus, and at this point in time it has worked! The ventricles in my brain are only slightly larger than a healthy 30-something. Though, I have to wonder if acupuncture hasn't helped with that. I've been on the same dose of Diamox since early 2012, and in December 2013 my ventricles were large enough to warrant the label of progressive hydrocephalus. I regularly see my acupuncturist twice a week, and in the first few months it made me pee and pee. Now, not so much. Maybe???

In August, my neurologist wanted me to go off Diamox, because of the increase in my POTS symptoms. POTS, or Postural Tachycardia Syndrome is a form of Dysautonomia. Patient.co.uk describes POTS as,

"an abnormal increase in heart rate on becoming upright. There are many causes. Although blood pressure does not necessarily fall, symptoms are similar to low blood pressure and can consist of dizziness, fainting, headache, sweating, shakiness, nausea, poor concentration and memory, discoloured hands and feet, sense of anxiety, chest pains and many others - mostly worse when standing."

The article continues, "When humans stand up, it is normal for about 500 ml of their blood to drop with gravity into their abdominal cavity, hands and feet. To stop blood pressure from dropping and to maintain blood supply to the heart and brain, our blood vessels normally automatically narrow very quickly and heart rate increases slightly (by 10-20 beats per minute). When the autonomic nervous system does not function correctly, as in POTS, this mechanism fails to preserve blood supply to the heart and brain. The heart starts to race and excess adrenaline may be produced to compensate." (patient.co.uk)

So, now you have a better handle on what POTS is. Thankfully, Dr. R didn't think Diamox would cause any serious POTS problems, because it targets liquid differently than how it presents with POTS.

The "herniated tonsil" is the fellow that's
causing all of the trouble and
needs to be removed

The other big news is that there isn't any concern about the "lesion" they found on my skull with the CT. He said the radiologist didn't situate my head correctly, so it was tilted in the machine, which caused an air pocket behind the mastoid bone to be prominent in the scans. It was there on the other side too, and obvious when he pointed it out, just not as big or large as the other, because of the tilt.

That's pretty much it in a nutshell. My surgery is scheduled for Dec. 17th, but because insurance still hasn't paid Dr. R yet, only Park Ridge for the testing, they want the 30% down payment before surgery, $11,700. So, the next couple of months will be spent figuring out the money issue, and if Park Ridge will be covered for the surgery by my insurance. I called yesterday, and got voice mail, and the same happened for Dr. R's office staff. Dr. R's office is willing to work with me, so the surgery can happen, but the hospital will not, so I have to have confirmation from my health insurance before anything can move forward.

Now What?

Now, I try not to panic. I know there's a way through this, but I worry about the uncertainty of it. To stay in NC for 2 weeks I need a $300 deposit, but what if the surgery falls through? I need to fundraise for the nearly $12,000, but I don't know what insurance will cover, and the cost could be more or less once they've made their determination. I need to figure out work, school, all my bills, and the basics of life. I need to ask people for help after surgery, but can't until I know more. And, what do I do with the cats for 2 weeks? Bring them with me?

My other big worry, actually bigger than any of these issues is, how do I spread the load, so people don't wind up feeling used. My biggest concern has always been how do I minimize the burden my health places on the people in my life?

Last night, I began to panic in class as I realized I had to broach this topic with my teacher. Things begin to become real when you have to start planning for them, and this was my first experience relating this to someone who doesn't know my story. I drove away shaken and teary-eyed. I would have given anything at that moment to have someone I could crumple in to, and allow myself to feel the fear and grief. It'd been building since the appointment, and here it was, no escape. But, I'm inexperienced with breaking down, and I knew I'd physically pay for the heartbreak if I allowed myself to collapse into sobs. I've never run to anyone with the intention of breaking down, and it felt melodramatic. So, I drove home to my cats, and we snuggled until I fell asleep.

As much as I need this surgery, I'm still scared, and I wish it wasn't part of my life's journey. I am blessed to have such great people in my life, and I know I'll navigate this, but it's really difficult. I am thankful that people led me to Dr. R. Instead of using scare tactics and belittling me, he lists the medical facts based on what all the testing shows, tells me I am a surgical candidate, but the decision is up to me. He's the only doctor I've ever seen who knows enough about his field of practice to be open with every question I ask. I treasure that after a lifetime in the medical system. He's the real deal.

Onward and upward.

Week 8: Blended Images

noreply@blogger.com (Anonymous) — Mon, 13 Oct 2014 03:50:00 +0000

This week we had an extra credit assignment on blended images. These images include three primary images from one of the local monasteries, and 4 images from the Fall Foliage Festival in Martinsville, IN. This was a lot of fun, and I ended up spending a lot of time experimenting!

Never Give Up!

noreply@blogger.com (Anonymous) — Thu, 09 Oct 2014 13:56:00 +0000

"Never give up...No one knows what's going to happen next."

-- L. Frank Baum

Week 5+6: Color Combos

noreply@blogger.com (Anonymous) — Wed, 01 Oct 2014 03:35:00 +0000

We used a color scheme generator to create color combinations for drawings. You choose colors and options and it generates similar or opposite colors. You can rotate the wheel by clicking and moving the dots. Use this generator to help you understand complementary (contrast) and analogous (analogic) colors.

Week 3 + 4: Photograms

noreply@blogger.com (Anonymous) — Tue, 23 Sep 2014 20:29:00 +0000

A photogram is a photographic image made without a camera by placing objects directly onto the surface of a light-sensitive material such as photographic paper and then exposing it to light. The usual result is a negative shadow image that shows variations in tone that depends upon the transparency of the objects used.

Happy Fall Equinox

noreply@blogger.com (Anonymous) — Tue, 23 Sep 2014 00:19:00 +0000

Week 3: Ode to My Love

noreply@blogger.com (Anonymous) — Tue, 16 Sep 2014 20:30:00 +0000

Week 1+2: Self-Portraits

noreply@blogger.com (Anonymous) — Mon, 08 Sep 2014 01:58:00 +0000

The first two self-portraits are the two that I submitted for class. The others are ones I had fun making while I was trying to find two that I wanted to work with.

This photo is a combination of a photo I took with my Olympus E-500 DSLR,
and a "slice" from the MRIs that I had run at the end of July. If you look closely
you can see that the veins in the back of my neck are kinked. This means blood flow
to my brain is compromised, and may account for some of my symptoms, like disorientation,
blacking out, vertigo, and dizziness.

The first of my rejections. I felt like it was a little too porntastic. I can almost hear the bad soundtrack now.

Ok, I really liked this one. Yes, it's too bright, and yes, it's focused on my hands, instead of my face, but that's kind of
why I liked it. I love working with my plants, watering them, taking care of them, the fresh air blowing around me...
"I" disappear, and I am engrossed in the plants and light, and in essence, only my hands are really present. Covered
in dirt, and happy, if hands can be happy.

Maisie Cat helped me with the last series of photos.

This one was probably my favorite, but I was disturbed by the glare in my glasses, so I went with the first picture instead.

All in all, it was more difficult than I had originally anticipated. Either the light wasn't right, the camera wouldn't focus right, I wasn't feeling inspired or creative, or I doubted every decision that I made. I guess we'll see what grade I get! *fingers crossed*

On Living

noreply@blogger.com (Anonymous) — Thu, 21 Aug 2014 01:43:00 +0000

If you read my last post, then you know I've been working through a lot. If you haven't click here. Almost two weeks ago I started taking time each day to follow the current 21 Day Meditation Challenge from Oprah and Deepak, study my Lojong Slogans, and contemplate the Zen and Medicine cards I have built a connection with. Most days they're spot on, though yes, one can argue that such things can be interpreted any way we want, and I think that's the point. They're universal, because we can work through he key concepts in conjunction with what is going on in our lives.

I journal, doodle, read Lojong commentary, and think about my life during this 30 minutes to an hour I spend sitting quietly in my little space. Sometimes, not much comes to mind, or I simply don't feel like I want to do more than the 20 minutes allotted to the meditation challenge. My journal entries are short, to the point, and fill less than a third of a page. Other days, they spill over to the margins, as I find the pieces of me that are wounded, hopeful, lost, and looming over me. All these fragments begin to come together, and weave the story of my life. There's a reason meditation is powerful, we can find ourselves in these quiet moments, and not everything we discover is pleasant. This past week I was confronted by my fears and anxiety. In the past, I never would have labeled myself as anxious, but the more I analyzed my life, the more instances I could find where I was a knot of worry and fear. I didn't like a lot that I saw, and last Monday I drew a reversed (upside down ) Crow from the Medicine Cards. The crow symbolizes divine law, so a contrary crow would symbolize rebellion, loss of power, and disharmony. I immediately became defensive, I was good and kind, and always did what I should, I mean, come on, I lived to serve others. When I looked beyond that reaction I saw the mind that often thinks it knows better than everyone else, the spirit that believed it could rebel without consequences to herself or others, and the disharmony that has been caused from lack of love and compassion, which all leads to a lack of power. I had lost the power of the crow.

I had spent my life judging myself and others, reacting with energetic bursts of rebellion that created disharmony and heartache for myself and others. It was time to make a change, not cut corners, and begin to honor the harmony that comes from a peaceful mind, open heart, true speech, light step, forgiving nature, and love for all beings.

Wednesday was day 9 in the meditation challenge, and the focus was "Living with Purpose." In this guided meditation Deepak stated that "our happiness and contentment naturally expand when we are living a purposeful life." We need to learn to "release our energy on purpose."

This was followed by the Zen cards that urged me to delve into my courage and problem solving skills. "Find the courage to hold on to your beliefs, even if the world around you chooses to believe differently. Have the courage to change those beliefs that no longer fit the person you have become. In doing so, you truly become yourself." Obviously, this would take self-confidence and self-knowledge to find the courage to create balance in your life. "The way to remove darkness from a room is simply to turn on a light. In the same way, to rid yourself of any difficulty, concentrate on the solution, rather than the problem." It sounds so easy, but what is the solution???

My Lojong Slogan for the day was

"Three objects, three poisons, and three seeds of virtue."

If you are unfamiliar with Lojong Slogan Training, it consists of 59 slogans, or sayings, that help us develop "deliberate compassion," as Chögyam Trungpa Rinpoche taught, "The Lojong, or mind-training, slogans are very simple, and not particularly philosophical. They are purely what one of the great Kagyü teachers referred to as 'grandmother's finger pointing.' When a grandmother says, 'This is the place where I used to go and pick corn or collect wild vegetables,' she uses her finger rather than writing on paper or using a map."

I started studying Lojong slogans right before my trip to see Dr. R at the end of July. I had found over the months that the philosophy and long Buddhist practices I used to study and practice weren't working for me anymore. My health had gotten to the point where I did not have the stamina for the hours of regular study and practice, and more and more I have been fighting my memory and disorientation. Attempting to continue as I had before only led to frustration, and self-loathing. I'm young, educated, love Buddhism, so this was all my own laziness. Being hard on ourselves is never the way to go, and only digs us deeper into this hole of self-pity. I had realized that, but was unsure of where to go, until I moved and discovered my long-forgotten box of Lojong cards in Pema Chödrön's Compassion Box. The slogans are a single line, and I can study them as I have the energy. The Compassion Box comes with a disk of teachings and a little book of commentary. When I feel like I need to expand on a subject I go to Volume Two of The Profound Treasury of the Ocean of Dharma: The Bodhisattva Path of Wisdom and Compassion by Chögyam Trungpa Rinpoche. I have yet to buy the seminal work on Lojong training, The Great Path of Awakening by Jamgön Kongtrül, but it is at the top if my list.

Anyway, Lojong "is the manual practice of deliberately manufacturing compassion. In order to develop compassion, you have to go beyond aggression, to be without anger. It seems absolutely necessary to tame oneself and train oneself... Deliberate compassion is the first development of compassion," and while it may seem hypocritical to manually develop compassion, sometimes we need to push beyond our daily humdrum and "fake it until we make it." Personally, I've found quite a bit of peace, inspiration, and motivation in the Lojong slogans. It's a fresh way to look at the world, and I for one can be too harsh. This training adds an amount of gentleness to my life.

Ok, back to slogan number 8,

"Three objects, three poisons, and three seeds of virtue."

Lojong project by Emily Millay Haddad

The first part we can understand fairly intuitively, the "three objects" are the friends, enemies, and strangers that fill our lives. We contemplate these people, and how their status changes throughout our lives. Someone we might trust and love with all of our hearts may betray us, and become an enemy, 10-15 years down the road, we might not recognize that person if they passed us. Seeing how these roles change allows us to see that our minds make these distinctions, and we change our behavior accordingly.

The second part refers to the three poisons of want, anger, and denial; or to put it another way, craving, aversion, and indifference. A third set of synonyms is passion, aggression, and ignorance. I love the different commentaries, because they give different options, and sometimes things become clearer when exploring those different interpretations.

We can see how these three seeds correspond with the three objects:

Friend: Want, Craving, and Passion

Enemy: Anger, Aversion, and Aggression

Stranger: Denial, Indifference, and Ignorance

Eventually, with mind training we may find that our labels for people, animals, insects, or anything else are heavily influenced by those three poisons. I want to be healthy, and this doctor or advocate can help, things don't go as planned or someone betrays us, and now they're the enemy. After our anger fades we treat that person with indifference. Acknowledging this is part three, "three seeds of virtue." We discover that we have the ability to control our minds and how we relate to the world, we begin to treat all beings with love-kindness and compassion, regardless of whether they can fulfill a craving, piss us off, or mean nothing to us. We offer love, and learn out let go of our attachments.

As if these teachings weren't big enough; live with purpose, have courage, find solutions, develop the seeds of virtue; there was one more lesson for Wednesday...

Lizard might look like he's sleeping on that rock, but he's doing to much more. Lizard medicine is the shadow side of reality where our dreams come to being before we manifest them physically. The shadow can be our fears, hopes, of those things that we resist, but always follow us around.

In pulling the Lizard card, I was being asked to look at my shadows, and what followed me. Is there something I'm avoiding, something I've been hoping for for awhile, or something else?

I realized with resounding clarity that I needed to stop living in the mind-frame that I can't do anything, because brain surgery is inevitable. Every step I have made for the past two years has been with this thought at the back of my mind. I can't date, because all of my energy goes into being sick, and fighting the healthcare system. I can't take classes, because I might have to stop at some point for surgery. I have to treat water, and be glad for that possibility, because it means I won't get sicker faster...

Guess what? I did everything I was supposed to, rested, ate well, took vitamins, fought for proper medical care, downsized so my life was easier. And, ultimately, I shrank my life down to this one purpose, maintaining my status quo, because the only other option in my mind was for things to get worse. And, then all of the fears of how I was going to care for myself would be front and center, and that was the last thing I wanted.

Guess what? for the first time in 17 years I got worse, quantifiably worse! The irony was mind-blowing. After 17 years of my brain looking the same on every MRI, suddenly, I've hearniated at least 5mm further into my spinal canal. It's nearly laughable. Seriously? Come on...

So, Wednesday night I went to the local community college and signed up for their "Visual Communications" AAS program, beginning with two classes, Fundamentals of Imaging and Intro to Computer Graphics. One class requires that I drive about an hour to a campus that offers the program, but the other is online. I also finalized my decision to take a 10-week online meditation course through bodhicourses.org.

Brain surgery might happen this semester, it might happen next, or I could continue getting worse for awhile before everything works out. I DON'T KNOW! I can't know until that time comes, so I'm going to start living with purpose, and follow my dreams, while facing my fears.

Coming Apart

noreply@blogger.com (Anonymous) — Tue, 12 Aug 2014 15:34:00 +0000

The breaking of so great a thing should make
A greater crack: the round world
Should have shook lions into civil streets,
And citizens to their dens.

- William Shakespeare

Two Wolves

noreply@blogger.com (Anonymous) — Fri, 08 Aug 2014 02:05:00 +0000

To see the full comic visit Zen Pencils.

"You have two wolves fighting inside of you, it's an old Cherokee legend. According to my grandmother's people, two wolves live inside every creature: one evil and the other good. They spend all of their time trying to destroy each other."

"My bad wild is winning."

"He doesn't have to, the wolf who wins is the wolf you feed. The evil wolf feeds on anger, guilt, sorrow, lies, and regret. The good wolf needs a diet of love and honesty, spiced up with big spoonfuls of compassion and faith. So if you want the good wolf to win, you're going to have to starve the other one."

"What if I can't stop feeding the bad wolf? What if I fail?"

"You won't fail. We won't let you. There are five of us in this room. Your big bad wolf doesn't stand a chance."

-Deborah Harkness, The Book of Life, p. 267

On Being

noreply@blogger.com (Anonymous) — Thu, 07 Aug 2014 21:00:00 +0000

"You're fucked." Those were the words that came out of my father's mouth after I showed him the scans from my tests last Tuesday.

I'm not going to lie, I was upset. Like, dude, the dire state of my brain is painfully obvious, duh.

I was about as upset as when a friend the week before had lovingly worried that I was wanting to be "normal," and putting too much hope in this possibility. I had cried then, after a super stressful week of preparing for a medical trip, that I’d fought tooth and nail for. It was the final straw for this camel's back. I understood the intention and worry behind each statement, but Why can't anyone get it? was what kept going through my head. On Tuesday evening, I did not cry. Nope, no tears, so besides feeling an overwhelming sadness, I didn't burst into tears or gnash my teeth. I simply rolled off his hotel bed, and repositioned myself onto mine. No one gets it.

"In recognizing the humanity of our fellow beings, we pay ourselves the highest tribute."
―Thurgood Marshall

To say this last week has been insane would be a huge understatement, but it's been insane for a while now. This year has had quite a bit of increased neurological symptoms, and of course, pain. Acupuncture helps, but it's basically keeps things at bay, doesn't heal me. Because I need brain surgery for a structural malformation, alternative treatments and medications will just make things a little better. Since the strain of events in May and June the symptoms have increased to the point where I'm experiencing blindness and memory loss on a daily basis, as well as the norm Chiari pain and symptoms, i.e. difficulty swallowing, gagging, dramatically increased Postural Orthostatic Tachycardia Syndrome (POTS) symptoms, yada yada yada.

"There is nobility in the struggle, you don't have to win."
― Sharon Pollock

All of this, on top of an emergency move that happened from start to end in less than a week, and my busy season at work, and, and, and … But, well, knowing the appeal that took 6 months of careful work from me and two dear friends was approved, AND I was FINALLY seeing one of the foremost specialists and brain surgeons in the US kept me going. Sure, I might feel like I'm dying, but Dr. Rosner will know what's going on. It kept me going. I didn't know if insurance would approve surgery, but I'd have answers to a mystery that has helped define this lifetime. It's these answers, and the knowledge that I might be able to use to help cope with what was happening to me; that's what I was really seeking. Not knowing how to properly handle things like blindness, tachycardia, and paralysis can be debilitating.

Soooooooo... This mess of stress, a lot of it in order to make this happen, and Dr. Rosner was called to court. Yup, subpenaed to court. I found out through the grapevine 3 days before I was supposed to leave that he most likely couldn't keep any of his appointments or surgeries for 4-6 weeks. I had a July 31st deadline set by insurance, so I called in a panic, and was told to come, because they wouldn't know anything concrete until Monday. So, I made the 7.5 hour drive to North Carolina to get the nearly $10,000 in testing performed before my pre-authorization expired on the 31st, and the tiny shining hope that the trial would get postponed. Just, maybe… Ah, that damned bit of hope that clings so tightly.

Life. Yes, it Happens

A comparison between my MRI and a "normal" MRI.

The trial wasn't postponed, but I did get my tour through the millions of dollars of diagnostic equipment in the radiology department of Park Ridge Health. In 4 short hours I had a Flex-Extension X-Ray, CT scan of my brain and cervical spine, a MRI of my brain, cervical and thoracic spine, and a Tilt Table Test. The first two procedures were quick, like, less than 30 minutes total, but of course, the MRI took a long time, over an hour and a half.


The pinched arteries or nerves (I'm not sure which) at the base of my skull.

The Tilt Table Test was the most immediately useful. I was hooked up to sensors, given an IV, and strapped to the table. When Dr. Bailey, a cardiologist, came in he tilted me up to a 60° angle. I immediately became sick, lost all color in my face, chest and neck constricted, and I became lightheaded. After monitoring my symptoms and asking me questions I was flipped upside down. I had real color in my face for the first time all day, and all of the symptoms began to clear. Dr. Bailey explained that the compression of my brainstorm was blocking the signals that are normally sent down my spine to my nerves. This compression is causing the malfunction of my autonomic system, from the underactive bowel and overactive bladder problems, to the problems digesting foods, to feeling pain in places that do not have pain receptors, like my teeth and hair, to muscle control and blinking -- you name it, so many of my secondary problems can be linked directly to the compression of my brainstem (mayfieldchiaricenter.com).

The "probable bony excrescence," and
my missized eyes.

Dr. Bailey also explained that the episodes I have of paralysis are POTS attacks. Since puberty, when the intracranial pressure became constant, I've had episodes of what appear to be paralysis or catatonia, no blinking, swallowing, loss of control of the muscles in my limbs, and it's difficult to breathe. Doctors have been unable to explain them, and I've been put on anti-convolscents, anti-depressants, blood pressure medicine, anti-psychotics, anxiety meds... Basically, every pill on the book that might help, but none of them have, while nearly all of them have made me much, much sicker. Even more infuriating is the fact that these doctors never had a clue as to what was really going on, it was purely a guess that these pills might work.

I was told that when these POTS symptoms begin I need to recline and elevate my feet to force the blood to my head. I should also get a medical ID bracelet that states this, so others know what to do if this happens. I was ecstatic! I mean, cripes, I've been led to believe I'm crazy and a hypochondriac, or epileptic, or crazy and a hypochondriac. Guess what? I'm not crazy or a hypochondriac! A lifetime of fighting against this easy diagnosis from lazy doctors, and I am vindicated. I’m not crazy or a hypochondriac!!

Getting Back to the Point

So, back to being fucked. I made the mistake of looking at the disk with the images from the scans. The MRI didn't have it's report, but the CT stated, "Probable bony excrescence off the inner table of the left temporal bone mildly indenting the underlying brain parenchyma. This measures 8 mm." On the CT scan itself, I noticed that my left eye looks noticeably larger than my right. There wasn't any noticeable difference in my previous imaging from December, but I have been experiencing a lot more blindness this year, especially in my left eye.

Possible small syrinx.

My big worry here is that this thing, whatever it is; Google said a "bony excrescence " is doctor speak for a lesion or tumor on the skull, which is somewhat rare for tumors, like 1% of tumors (emedicine.com). I didn't even know that was possible! Well, I knew cancer could metastasize into the bones, but I didn't know tumors or lesions could start there. But, in any case, my big worry with this is that whatever this new thing is in my head, it will become the focus of treatment, instead of the Chiari.

And… There’s a possible syrinx in my thoracic spine… WTF. Seriously. Though, in all seriousness, that isn’t surprising. I’ve had Chiari and brainstem compression for a very long time, so why not? So, I won’t get too upset over that, because it just means things are progressing, as I already knew they were from the symptoms I experience. What's a syrinx you might ask, "a syrinx is a fluid-filled cavity that develops in the spinal cord, in the brain stem, or in both.People may become less sensitive to pain and temperature and experience weakness in the hands and legs, or they may have vertigo and problems with eye movements, taste, and speech. Sound familiar? It sure does to me. Hello, daily life! (merckmanuals.com)

Worry, worry, conjecture, and guesstimation...

On Being

Ok, so what does all of this have to do with being fucked up, normal, sick, or anything else? Basically, that if you've followed me on Facebook, this blog, Instagram, or in real life you know that my life is a never ending roller coaster. Because of the compression of my brain, I never know if I'm going to feel relatively normal, sick, or fucked up. My body has never had a constant, fixed state that we define as "normal" for me to count on. The most basic thing that all living beings use to track the progression of time, space, and reality, i.e. my body, is compromised. At it's most basic core, my body has malfunctioned from chronic brainstem compression since sometime before birth.

The thing that is really hard, and really amazing, is giving up on being perfect and beginning the work of becoming yourself.
― Anna Quindlen

For some people Chiari is a shocking diagnosis, because they were seemingly well before an accident, or their only health concerns have been headaches that were ruled migraines (once again often lazy doctors going for an easy diagnosis without diagnostic testing). For these individuals, Chiari is a blow, a thing that has silently lurked in the background like a ticking time bomb. For me, it's different, because the earliest symptoms I remember were when I was a toddler, and they increased at an alarming rate as I aged. I've never been able to rely on this body we all take for granted.

Every day is an adventure for me, because I never know what I can expect from my body. The external schedule usually doesn't change much, but will I be able to blink? See? Comprehend spoken or written words? Will I be in a state of confusion so deep I don't know who I am or what I'm doing? Will I remember my day? Will my muscles work? Will I pee 50 times today or 3? How about swallowing? What about the increased pressure in my head? How will it rank today? Will I be able to turn my head? Feel my fingers? Maintain my internal temperature? Will I go blind while driving? Or, paralyzed? To sweat or not to sweat? How about the exhaustion from keeping it all together, and appearing normal to the casual observer, when my body isn't working?

This is my normal, and has been since I was prepubescent. I kept it a secret for a long time, because I spent my late teens and early twenties being told I was crazy by uneducated doctors, because, according to them "Chiari doesn't cause symptoms outside of headaches at the base of the skull." Eventually, you just learn to live your life, and make compromises that allow you to still function in the world.Grin and bear it, ya know?

"It is the absence of facts that frightens people: the gap you open, into which they pour their fears, fantasies, desires."
― Hilary Mantel

Saturday, I spent the day on the couch resting. My feet were swollen, my head throbbed, I had tinnitus, and my arms and fingers hurt so badly I could barely pull my pants down to go to the bathroom or make a pot of coffee, which is obviously the more important of the two tasks – no coffee, no life. I was also clear headed, at peace, happy to be home, snuggling with my kitten-cats, and focused on a great tv show throughout the afternoon. This is normal, because it holds both the good and the bad, the joy and the suffering of being alive. When this is your life every moment is poignant and special, anger fades, and those normal daily irritations lose their power, because you know there's a chance you simply might not wake up one morning (pkjns.com). You weigh your responses and feelings, and think about what really matters to you, because the transient nature of life is doing the hokey-pokey right in front of you, letting you know, this is what it’s all about.

Labeled

And, this is why those words -- labels -- bother me, because they minimize my life; everything I have lived up to this point, and everything I will live from here on out. They minimize the life of the person(s) making the statement(s) too, because we’re all alive, and existing moment to moment, together. This, all of this, is normal. How we react to it, and how we allow it to shape our lives is what really matters. I have chosen to be happy, to see the good and positive that coexists in every situation, along with all the rest. I have chosen peace, resting in the knowledge that everything in life is temporary, and what I’m dealing with at this moment will pass. Have I learned anything from moment to moment? Am I a better person for this life? It’s my greatest desire to not Conquer Chiari, but to Conquer Fear and Hatred. In hating and fearing Chiari, I hate and fear myself. Chiari is as much a part of what this body is, as my left toe, and while my left toe does not hold the potential to paralyze or kill me, that doesn’t mean I am going to spend my life loathing a part of me.

This is what goes through my head when people label me, and ultimately judge me for something they can never understand unless they also suffer from an invisible illness. I am as normal as the next person, and just like everyone else, I'm looking for answers and methods that will allow me to continue living this life to the best of my ability. Chiari has no cure, the malformation can be surgically altered, but symptoms persist throughout a person's lifetime. The goal is to slow, or halt, the progression of symptoms that will drastically minimize quality of life.

In this, pain is the least of my worries, but what everyone else focuses on first. Pain to some degree is part of everyone's life, and for me it is normally managed through acupuncture and meditation, since pain pills lost their effect with the occurrence of Empty Sella Syndrome (rarediseases.org and uprighthealth.com). What keeps me moving forward is the knowledge that chronic neurological deterioration is too often irreversible. The sooner problems are faced, the more likely it is that there will be a positive outcome. Am I in pain? Always, but even that ebbs and flows, so I'm not going to focus my limited energy on that.

“Many people lose the small joys in the hope for the big happiness.”
― Pearl S. Buck

So, I continue my journey with the medical community. Every day shows me that I need a medical intervention before something dire happens. My life isn’t a piece of cake, but I can manage it. If I’m blind, paralyzed, or worse then… Well, I don’t know what then. I’ll be legally disabled, but beyond that I don’t know. And, that’s what it comes down to, right? I don’t know, and that not knowing is scary as Hell, because how does one envision their life disabled? Yet, millions of people are disabled, and their lives continue, maybe, not as they once were, but life continues.

P.S. I wrote most of this on Saturday, less than 24 hours after I returned from my trip. Since then, I've had a lot of time to think, cry, wonder why, wish I'd met my deadline and had answers, so on and so forth. I'm still coming to terms with things not working out this go around, but as Conan O'Brien said, If you work really hard, and you're kind, amazing things will happen.I believe that, so despite my desire to cancel all of my upcoming doctor's appointments and hide for the next few weeks, I'll be breathing into this experience, and learning everything I can.

One thing I can say for certain is that I'm blessed out the wazoo! SO, SO many people have gathered around me in the last few months, as I've struggled to figure out what to do. I would be truly lost today if it weren't for all of you who have helped me every step of the way, and I'd be far less of a person for not having all of you in my life. Each day there's some special blessing that reminds me of everyone who's rooting for me, so thank you, because truly, you all keep me going when I don't have the strength to do it on my own. My blessings abound __/|\__

Video: America's Daughters

noreply@blogger.com (Anonymous) — Wed, 25 Jun 2014 18:45:00 +0000

Pawel Kuczynski

noreply@blogger.com (Anonymous) — Wed, 18 Jun 2014 15:11:00 +0000

Pawel Kuczynski graduated Fine Arts Academy in Poznan has been rewarded with more than 100 prizes and distinctions creating thought-provoking illustrations that comment on social, economic, and political issues through satire.

In 2005 he received "Eryk" * prize from Association of Polish Cartoonists, for the newly discovered cartoonist, with a record number of awards in international competitions.

To see more of Pawel's work click here.

Life is a Little Messy

noreply@blogger.com (Anonymous) — Mon, 19 May 2014 15:58:00 +0000

"Aeonium" By Russ Mills

"What are you going to do?
Everything, is my guess.
It will be a little messy, but embrace the mess.
It will be complicated, but rejoice in the complications."

-Nora Ephron

Shattering

noreply@blogger.com (Anonymous) — Mon, 21 Apr 2014 15:42:00 +0000

These two young women were raised to see each as "the other." But in this powerful performance, they confront and untangle the stereotypes that have worked so hard to keep them apart. Makes me wonder how different the world might be if we all spent a little more time focusing on our similarities.

Life is Kind

noreply@blogger.com (Anonymous) — Sun, 20 Apr 2014 15:43:00 +0000

By Marabeth Quin

"I have learned that life is kind, and I always find a way through."

- Peter Adler, The Paradise, Episode 4

Oft Times

noreply@blogger.com (Anonymous) — Fri, 18 Apr 2014 19:12:00 +0000

Image by Maria Wasik

Often it is easy for me to forget why I need surgery. After a lifetime of dealing with this, I am very adept at living amidst my pain and neurological issues without giving them much of a foothold in my life. Yes, I hurt. Yes, I often can't see. Yes, the smallest of touches feel like knives going into my skin. But, we adapt. We are wondrous beings, and we learn to adapt to what we might think of as unbearable at a certain point in time. Suffering as is much a part of life as pleasure, and we can learn to live a very happy life amidst our hardships, because in the end, it's simply life.

Today is one of those days where I am reminded how miserable things can get. I hurt so badly my teeth even hurt. I haven't slept the night through since... Saturday? Sunday? I lose track at this point. My fingers hurt to type, yet that's what 90% of my waking day calls for. At times like this I wonder how I can continue, and then in a split second it changes, alters in some way and I either forget in the blink of an eye the edge of my pain, or I go over the edge and fall to a new ledge.

Amidst all of today's bullpoopie I was told that a group of friends had come together, raised, and deposited into my medical savings account $1,265 "so far" for my surgery, for a grand total of $1,862 above and beyond what's already been donated in March. When I told a dear friend of this she responded that the sales from her latest short story would be going to me as well. I am in awe. Speechless. It is at moments like this that I wonder how I could be so blessed. Who am I to be surrounded in such love when so many others suffer alone. I am filled with gratitude, and left gawking at all I am blessed with in this life. Thank you to everyone who gives me strength through your support, prayers, dedication of merit, and healing energy. I would be lost without you all.

To donate click here.

Vyacheslav Mishchenko's Snails

noreply@blogger.com (Anonymous) — Thu, 17 Apr 2014 15:33:00 +0000

Vyacheslav Mishchenko

Highlighting the beauty that exists in even the tiniest, and seemingly most insignificant of lives. Our world is indeed pure magic.

Click here to see the rest of these stunning photos.

Salt

noreply@blogger.com (Anonymous) — Thu, 17 Apr 2014 15:12:00 +0000

To see other photos from my trip to Edisto Island, SC click here.

“I know of a cure for everything: salt water...in one way or the other. Sweat, or tears, or the salt sea.”

― Karen Blixen

Humble Places

noreply@blogger.com (Anonymous) — Tue, 15 Apr 2014 18:37:00 +0000

The Hour of Silence

noreply@blogger.com (Anonymous) — Wed, 09 Apr 2014 16:10:00 +0000

Photo Credit: angus clyne via flickr

We went down into the silent garden. Dawn is the time when nothing breathes, the hour of silence. Everything is transfixed, only the light moves.

- Leonora Carrington

Surrealist painter Leonora Carrington (born April 6, 1917) fled Europe during WWII and lived the rest of her life in Mexico City, where she wrote equally surreal novels.

What Suffering Does

noreply@blogger.com (Anonymous) — Tue, 08 Apr 2014 13:49:00 +0000

by David Brooks

Some people are clearly ennobled by suffering. Think of the way Franklin Roosevelt came back deeper and more empathetic after being struck with polio. Often, physical or social suffering can give people an outsider’s perspective, an attuned awareness of what other outsiders are enduring.

But the big thing that suffering does is it takes you outside of precisely that logic that the happiness mentality encourages. Happiness wants you to think about maximizing your benefits. Difficulty and suffering sends you on a different course.

First, suffering drags you deeper into yourself.

Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control.

To read the entire article click here.

*D.Day*

Winter Wonderland

Fundraiser is Now Live!

To Exhibit

What does the brain stem do?

OMG, Brain Surgery

Now What?

Week 8: Blended Images

Never Give Up!

Week 5+6: Color Combos

Week 3 + 4: Photograms

Happy Fall Equinox

Week 3: Ode to My Love

Week 1+2: Self-Portraits

On Living

Coming Apart

Two Wolves

On Being

Life. Yes, it Happens

Getting Back to the Point

On Being

Labeled

Video: America's Daughters

Pawel Kuczynski

Life is a Little Messy

Shattering

Life is Kind

Oft Times

Vyacheslav Mishchenko's Snails

Salt

Humble Places

The Hour of Silence

What Suffering Does

D.Day