Rolling Reality

Keeping the Faith, in Humanity

2014-02-13T12:33:00.000-08:00

Well it has been a very long time since I have posted a blog, May of last year. A lot has happened over that time. I am happy to report that I have not lost any further functioning. I still cycle between good stretches and bad, recently more good than bad. However, the winter has made my interactions with life outside the home limited to say the least. Inside the home life is more active than ever, this place is always full of people coming and going. I like the distraction and it keeps me from being or feeling isolated. I have turned into the neighborhood Mom, a role I quite enjoy. That being said, I do still miss working. Not working per se, but having a career and making a difference in the world.

Getting around independently in the outside world has proven to be difficult and painful at times, but never so much as the day I bumped a wheel well with my chair tire. I encountered a couple that tried to scam me through intimidation. Stating that I had done severe damaged to their SUV with my wheelchair, the pair verbally assaulted me. Trapped between my van and their SUV the female came at me in my chair screaming and swearing while shaking her finger in my face. They would not relent, stating I had created several scratches the length of their car and knocked their back light out.

Once a Good Samaritan, also visibly physically disabled, came to my aid my nerves calmed a bit and I called the police for assistance. The woman who came to help scratched down the make and license plate number of the SUV, all while she tried to control her hand tremors. As the police arrived the couple rushed the officer stating I was crazy and destroyed the side of the car. As they plead their case, the more they said the deeper their hole got. The officer then spoke with me and I explained simply that my chair was not tall enough to have done the damage that was on their SUV. He asked me to roll over to it and clearly saw my point. After cautioning the couple about their statements based on his observations of the damage/height discrepancy, they were then free to leave and go about their business.

I would like to say that these people did not shake me and that I am stronger than that. Unfortunately the truth is that it did shake me to my core. I knew there were bad people in the world; in fact I worked with the worst of the worst at Bridgewater State Hospital for the criminally insane. However, I was still completely shocked that anyone would target me as a mark. I was furious! I was never before afraid out there in the world. I was strong and confident, never did I present as a potential victim. After years of studying psychology and criminal justice classes, I learned how to maneuver in this world while decreasing your chances of becoming a victim of crime. Yet here I stood. They tried to get me to pay them for damage to their car with my wheelchair, even threatening to call the police on me. This can only be described as scumbag behavior. It took a long time for me to process this event and come to terms with the fact that we do interact with individuals such as these two on a regular basis.

The ultimate lesson I learned from this encounter is that in my time of need a caring, and also “broken”, woman was the one who came to my aid. She disappeared while I was talking to the officer and I never got to thank her for helping me. She did not feel weak or vulnerable; she stepped forward and intervened to help a stranger in need. Perhaps she did feel vulnerable, but it didn’t stop her from pulling over and getting out of her car to come to my aid. This clarity made me whole again. I am still me and whether in a chair or not I am still me. I stood up for myself (no pun intended) and I was not a victim of their crime. Ironically, I have more faith in people than ever, I know that when I was in need the humanity in another made me strong enough to carry on.

In fact many good things have come from this event. Being home more I learned some new skills I had previously neglected due to not having the time. I have developed into a fairly decent cook. (Those who know me well will be floored by that revelation.) I have greatly enjoyed spending time with my youngest boy who is interested and excited about cooking with me. In addition, our family has spent more time sitting down with each other and sharing a meal, as well as “catching up” with one another. My BFF and I have started a new tradition awhile back. We committed to each other to gather our families once a week to have a meal together. We made this pact after watching two of our friends, also best friends for decades, go through the process of a long and horrible death, as one died from cancer. We decided we would never again take our friendship for granted. My contribution tothe dinner table has improved drastically.

I organized my “studio area” and began working with my jewelry designs again. I have really enjoyed researching different types of crystals, rocks, gems, etc. and combining them in a meaningful and aesthetically pleasing way. This has resulted in a significant amount of stock, something I struggled with in the past. This allows me the opportunity to participate in craft fairs this spring. I am really looking forward to this, I enjoy a good craft fair.

My take away is this:

Don’t let scumbags keep you down.

Have faith in humanity.

Be kind to each other.

You may never know that someone out there thinks you are a hero!

Staying Sane: A flare-up

2013-05-30T15:05:00.000-07:00

I swear the mental battle with this disease is harder than the physical one. It takes so much mental effort to mange the pain there is little brain power left over to deal with the rest of life.
This is most difficult during a flare-up. A flare-up is a term used to describe a sharp increase in symptoms that last for a period of time. Typically when I have a flare-up all of my symptoms increase but most difficult is the pain. When this occurs I am unable to walk at all, something I have become increasingly good at inside my home, and in turn this leaves me stuck inside alone. This then becomes a true test of my strength and mental health. I know both from professional and personal experience that isolation can have a detrimental effect on an person's psyche. This last flare-up was the toughest test I have experienced yet.
It was starting to show signs of spring, not like the past few years here in New England where it went from winter to summer in a day, but the real deal. I was so excited to begin a new season of sports with the boys. It had been a long tough winter and I had been holding this image in my head for months. Sitting at the field with a blanket and sunglasses as I watch them enjoy being outside again. I was able to get in a few games before the flare-up started. I was stuck in bed for over a week and was furious I could not get out of the house. I was angry that my body would not keep up with what my mind.
I was fortunate that I had enough support that not one day of school, not one game nor one practice was missed. I was able to do homework with the boys in my bed, friends came to sit with me and my husband held down the fort. In retrospect it is easy to see how lucky I am and stay positive, but when in the grips of it there were only glimmers of a brighter day. I am also fortunate enough to have learned along the way to have faith that "this too shall pass." Having said that, it was one of the most difficult things I have forced myself to do. That is why I am writing this blog today. I know how hard it can be to hold on to others when you cannot see through the darkness, but you must. It may seem an impossible undertaking but with the help of others you can make it through. If you feel lonely reach out. This world is full of people and most of them good. Sometimes asking for help can seem an unobtainable feat in and of itself, but if you have just a little faith in humanity you might just find I am right about this one.

Asking for help was something I really struggled with, I enjoy being the one helping others not the other way around. Unfortunately I spent many lonely times while I tried to manage on my own. Asking for help does not make you weak. Being too afraid to ask and not trying to reach out will make you weaker in the end. If you are battling something in your life that is bigger than you please consider my words and reach out.

Psychological First Aid: A personal experience

2013-04-17T12:46:00.001-07:00

After the evens this past Monday at the Boston Marathon I have been repeatedly reminded of my training for the Trauma Response Team. This team is comprised of various mental health professionals. When there is a traumatic event the team gets called in and they provided Psychological First Aid to those in need. I recall I studied hard because I knew when the day came it would be the real thing and I would need to rely on my training. Well the day has come for so many and I have to say I am incredibly impressed with all the people of Boston. This was a spectacular array of responders, from the trained police and EMTs, to individuals who had just completed a marathon, including men in full military gear. It was heart wrenching but at the same time we witnessed the greatness of so many as they cared for their fellow humans. The tremendous response saved many lives and gave us an example of who we should aspire to be in this life.

My husband, sons and a friend were at Fenway and made it onto the Green Line before the explosions occurred, they were on the train but did not feel the blasts. I was unable to attend the game (not because of the wheelchair) but was watching from home and my husband would text me pictures, as to be part of the day’s activities. When I saw it on the news my heart sank. He had just texted me a picture of mile marker 25. It would be very likely that they would walk over after the game and cheer for the runners as they crossed the finish line.

They were still around mile marker 25 when they heard the news. Luckily they had parked near his old office and could get to their car and out of the city before they closed down the train. I was calling and texting but could not reach them on either cell phone. Finally when my husband was a little further onto the Mass Pike I was able to get through. My husband answered the phone, “Ah-oh, I guess Mom saw the news. We are fine, on the Pike and headed home.”

I had such complex feelings at that moment. I guess I would say relief and guilt were predominant. However, that wouldn’t compare to the emotions I would feel as my son grappled with feeling guilty.

How do you explain to your eleven-year-old that it is okay that he is safe and fine? This was a surreal experience, in the true sense of the word. I said and did all the things I had learned and was able to get to healing and moving on. Yet I can’t help but shake that feeling I had when I was holding him as a newborn on September 11, 2001. His world will forever be changed. Then I refocus on the lives of those who will tragically never be the same. My heart breaks for them. I had just a quick glimpse into their world when I could not get in touch with my guys. This was the most anguish I have ever experienced. I cannot even imagine what the reality of that would feel like. I pray I never do.

I know a bit about terrorism from grad school, I actually had to take a course titled Terrorism. The whole premise behind it is simple; terrorize innocent people for some gain on the part of the terrorist. This is a fact that we as Bostonians, or Americans, will not tolerate. The only way they win and get their gain is if we become terrorized. Fortunately we are much tougher than that, hence the Patriot’s Day holiday.

I have no doubt that next year’s event will be bigger and better because that is how we fight back against this weapon.

If You Don’t Laugh You’ll Cry

2013-02-18T17:32:00.002-08:00

It has been some time since I last posted to my blog and much has happened in my life. I have unfortunately lost some functioning again and need the chair more often than not these days.

I went for my evaluation at outpatient rehabilitation and received the referral needed to get back into the pool for aquatic physical therapy. I was not surprised at my functioning level, but there were a few times that she was pleasantly surprised at what functioning I did still have. She was right after all. At one time walking again did not seem possible with the amount of nerve damage and I can still hear the echoes of the doctor’s words who first told me so.

What a great feeling though, she was pleased with what I could do. This gave a great surge to my optimism and thus my strength. This surge was much needed.

Following this my sister came into town so we could attend the wake of a friend’s mother together. I drove, I can still do that physically, however I did go in the complete opposite direction. After many anxious moments in traffic, snow and rural darkness we did eventually find our destination. That is when things went down hill.

After circling the nice big old funeral home three times it was still unclear where I should enter the building. After a short discussion we decided that she would go in and ask how does one enter the building if they require a wheelchair. She gets out, hikes down her short skirt, brushes herself off and walks toward the front stairs in her two-inch pumps through the snow bank. About one minute later she is headed back to the car shaking her head. She opens the door and as she is sitting down she says, “we have to go around back and there is a door where they bring the dead bodies in, we need to go there.”

I ask her to repeat herself and she acknowledged my confusion, stated go around back and we will follow the smell of formaldehyde. We pulled around and I parked in front of a three-car garage. It was dark with very little outside lighting. We were discussing where the door might be when all of a sudden one of the garage doors opened. A man in a suit appeared and stated that we could follow him. I wheeled between two hearses and we headed for the back of the building. As we approached the rear of the building the man took a left and opened a door. He gestured that we enter and as we did I noticed on the wall in front of me was a Hazardous Materials sign. In big red letters was a warning about formaldehyde poisoning.

To my left was a rudimentary style lift that was used to bring the bodies up to the viewing area. He again gestured, indicating that we get on the lift. I carefully rolled myself onto the lift, not sure where to stop because there were no guidelines or security modifications. After all it was not made for the living. The whole thing felt rickety and as the three of us slowly went up, my sister asked “So do you have to do this often?”

The response, “All the time.”

As I sat pondering his statement the opening to the viewing area came into sight. There was no more time to think about this, it was time to focus on our friend and her enormous loss. We stayed until it was appropriate to leave and give the family some time alone.

My sister went to find the funeral home attendant because we had no idea how to get out of the building. The two of them returned and I followed them back into the other room. He removed several chairs away from what appeared to be a wall. He opened a door to revel the lift we had come in on.

As I rolled back out toward my car past all the inner workings of a funeral home, I began to process what had just happened. We got in the car and headed somewhere we could get a good meal and catch up.

As we pulled into one of my favorite places in Quincy to grab a great meal and headed for the reserved parking, I had to stop the car. I could not believe my eyes, there have been several times the spaces were full but not like this. There in the three reserved spots for the disabled was the snow that had been plowed from the parking lot. Outraged we decided to park illegally and go in for dinner. However, the wait was longer than our stomachs could handle so we headed somewhere else, my new favorite place to grab a great meal.

We pulled up and right out front we found a cleared reserved spot. She went to the back of the van and in her high heels all 120lbs of her pulled my wheelchair out and she brought it to me to put together. As I wheeled up the ramp someone opened the door and brought us right to a table. The place was nearly empty but we already knew the food was great so it was just fine with us. I love it when there is someone there refilling my water glass as needed. When you talk as much as I do you go through a lot of water.

We stayed and while enjoying our meal discussed the evenings highlight, our scary elevator ride. We talked about how normal we were about it, like this was everyday practice for me when entering a building. We just went along with him and used our best manners. We behaved as if we did not want to embarrass him. We also talked about how he should be embarrassed. We talked about the spooky back room and the unorthodox handicapped entrance. The more we talked the more we laughed about life and enjoying the good it has to offer. As we laughed she all of a sudden got serious and said, “It is good you can laugh. If you don’t laugh you’ll cry, right.”

I agreed and toasted to her thought.

Forgive, O Lord, my little jokes on Thee,

And I'll forgive Thy great big one on me.
~Robert Frost, "Cluster of Faith," 1962

Feeling Like a Champ

2012-09-24T13:13:00.001-07:00

For many a Sunday afternoon on the sidelines of their child’s soccer game is ordinary. Not for this chick…

I sat there looking around at the remarkably blue sky, the harbor in the distance and the sea of young boys running with all their might. We were at the third field back at the local soccer fields and there I was sitting with everyone else. The best part was my son’s face when he looked up and saw me sitting there; he beamed from ear to ear. He gave me a slight wave and kept on with the game he loves so much. At that moment everything was right in his world.

This moment was very normalizing. As I sat in my camping chair on the edge of the field, I looked like all the other Moms there. Those who did not know me had no idea I was dependent on a wheelchair. What an amazing feeling! The only way I can explain it is as being surreal. It was really as if the sky was bluer, the temperature was made to order and the children’s laughs were crystal clear.

The experience gave me something of an electrical charge, ready to take on more. Charged and ready to go I began cleaning house, both literally and figuratively. Most significantly, I will fight to clear out negative thoughts about my future and walking. I have proven to myself that nothing is predetermined and the doctors were wrong about me so far. That is enough proof for me that they cannot give me a reliable prognosis.

This brings me back to a familiar motto for recovery, one day at a time. I plan to take each day as it comes and see what I am able to get out of it. If I have a “bad day” I will attempt to leave that in the past and try again with the gift of a new day. I realize this sounds like a lofty goal, to stay in the day, but I am going to try!

Some of the significant steps required pulling this off in the real world:

Good appointment keeping
A running To Do List
Household management routines (i.e., bills, transcribing appointments, organization)
Track what you accomplish (in case you need to reference later)
A good support network!

My Nemesis: HMO of PCP?

2012-09-18T11:25:00.000-07:00

Just cancelled the OR booked for tomorrow’s procedure because my Primary Care Physician, PCP, wants me to see someone he is affiliated with that “might be a solid choice” instead of the one suggested by one of my specialists. I have two health insurance plans and both approve my choice of surgeon and hospital, but my PCP will not sign a referral. I cannot put into words how completely frustrated I am right now.

I spoke with my primary insurance provider and explained that I felt this was a conflict of interest; where was the PCP’s allegiance to his patient or the company signing his checks was my point. Especially if the doctor I found has more experience and a better reputation than someone he looked up in his company’s directory and he doesn’t even know. How is this the best care? That is why the HMO is designed this way, to give you the best quality and continuity of care.

My PCP could have signed the referral and I could be at Brigham and Women’s tomorrow getting this resolved, instead I have to wait until the middle of November to see a doctor in Wellesley for a consultation and start the whole process over. This means I will not be well enough to return to Aquatic PT until early next year, which will be a total of about nine months missed. This means I have to start that recovery process over again as well.

After discussing this with the insurance company I learned my only recourse is to fire my PCP and choose a new one.

I cannot help but think, is this a personal reaction on his part because he felt “left out of the loop on this one” or is this really him towing the company line. Either way if one were to consider the patient’s best interest here, I would be done tomorrow and back in the pool in four weeks. That being said, can I really continue to receive care from this physician? As I consider our history together I am carefully examining each decision over the past several years. Is this the first time he failed me? Does that even matter if he knowingly put my health, my walking, to the side to maintain company affiliation?

Severing ties means saying goodbye to my providers affiliated with this PCP and his company. This system of health care is exasperating! In the field of community based mental health services, treatment is client-driven because they know its value. I should be able to choose my own providers given my vast array of medical professionals. If one of these providers (particularly one who performs surgeries themselves) makes a recommendation for a known entity to treat me, versus my PCP having to look someone up in a directory, I believe that should suffice. Unfortunately no one asked me because they do not care what I think, so I must move on.

I will start by doing research on a new Primary Care Physician. When control is taken away from us, whether real or perceived, we need to take steps to empower ourselves. So I will make a list, do the research, and interview the best candidate.

Taking steps to take control back establishes confidence and allows us to focus on the tasks instead of the overwhelming feeling of being at the mercy of others. When you cannot choose your surgeon you definitely feel powerless and that is no way to start any medical recovery process. Therefore I need to regain my confidence before I have my new PCP refer me back to the surgeon I chose. I am hoping that finding someone I am comfortable with will do the trick.

~Wish me luck!

In Memory of Doc

2012-08-26T10:52:00.000-07:00

Doc was an amazing and loving man who brought people together to share laughs, stories and great food. Doc was a client of mine back in 2003 and suffered from schizophrenia. He was Jamaican and had a gift for cooking his native foods, his weekly meal became a time when everyone gathered together in the residence. His cooking became my greatest asset in reaching out to my clients and staff.

The joy of his meal brought even the most elusive of clients home, relaxed and full for the evening. I soon changed my schedule and began working later on Doc’s assigned day to cook. It was a great feeling to look around and see everyone interacting, laughing and enjoying the moment. They all had so many problems, staff and clients alike, but in this moment they were united.

This united feeling translated into treatment, because they had begun to know and trust each other. The greatest irony was that this was the most difficult residence we ran at the time, a 24-hour staffed group home for those with mental illness and substance abuse treatment needs. This was the house where clients went missing on a regular basis, individuals were hospitalized on a regular basis and treatment was complicated by the fact that many of the clients did not want to engage in treatment. This made Doc’s weekly gathering a rare and opportune moment for any treatment planning and implementations to occur.

Doc was around just long enough for the schedule and routine to stick and in his absence staff and clients worked together to try and replicate his cooking. I recall when he went missing and the feeling of worry. I called every hospital and police station in the Boston area. I faxed his picture and info to everyone I could, including the state morgue. Poor Doc lied there for seventeen days before anyone was notified. He died at the track so I tell myself he was happy, he loved that place.

His funeral was like nothing I had ever experienced. The raw emotion at the grave took all my strength. His mother fell into my arms struck by grief and his brother hurried over to stand her up again. He was such a handsome man, the youngest of nine children he looked just like his older brother Doc. He was a gentle man like his brother too, he had the same kind soul.

Following the funeral was a celebration of Doc’s life, complete with great food and music. For hours all those who loved and knew Doc danced, laughed and celebrated. What a contrast to how I had been raised. I recall thinking, this is what I want people to be like when I die.

Residential being what it is, before long there were all new staff and all new clients living there in Doc’s home, but every Wednesday night the group came together for dinner.

Rest in Peace Doc

Tree of Life

2012-08-01T16:18:00.001-07:00

It has been seven weeks since I have been able to attend physical therapy due to other medicals. Underwent a surgical procedure and I am beyond ready to return to my life before this. Interesting, all of a sudden life in a wheelchair is far more appealing. With my wheels I can do so much more than I could have imagined. For example, roll myself to and from a rehab pool that would give me use of my legs more and more each week.

I miss that strength. The strength that comes from staring down the “seemingly impossible” and knowing that trying and living were so closely encircled. Each attempt fueled the living processes; with each success came a desire for more. With each step I took I felt a surge of energy and was cognizant of the need to enjoy and appreciate each day for what it brought.

Having been benched from life for so long now, I am becoming aware of my depleted energy and my depleted desire. This is a dangerous place to be in life, this is when people begin to live not for themselves but for those they care about.

For example, “Are you feeling like you might hurt yourself, or take your own life?” Mother/Father: “I would never do that to my children!”

This tells me this individual feels intense pain and might entertain suicidal thoughts but their love for someone else is what they count on to keep them alive. This pain is serious and should be discussed with a mental health professional. I am not suggesting that anyone who has said this is at risk for suicide, but we do not need to carry that kind of pain when there are resources to help elevate some of the burden.

Many of us were raised to believe that there was something wrong with seeing a mental health therapist. This belief system is strong rooted in many cultures, but it is baseless; mental health needs attention just like physical health is important.

When we ignore mental health symptoms they can get worse just as ignored physical symptoms can worsen. So why do so many people ignore mental health symptoms? Often it has something to do with what other people will think. It cannot be stressed enough how invalid this answer is under any conditions but especially under these circumstances! We would never judge a young girl receiving treatment for leukemia, yet some would judge a young girl receiving treatment for a depressive disorder. This is wrong on so many levels.

Be sure you are living your life for you because that is where strength comes from, don’t let society confuse you of your worth. If you need a mental health tune-up please do not ignore it.

I agree that being Mom is my favorite role in life and understand this perspective of living for our children, however, we need to see beyond that. It is who we are that makes us successful in our most important and precious roles in life. If we neglect to take care of ourselves as a whole we jeopardize being successful in the roles that matter most. Imagine the tree of life; the tree must be strong to support its branches, leaves and seedlings. Take care of yourself because if you are healthy and strong those around you will also reap the rewards.

The Moment

2012-07-12T13:00:00.000-07:00

The battle of body and mind continues and each day brings with it new challenges and newfound confidences. Some challenges are, or appear to be simple, but winning still feels great. For example, weeks of scratching mosquito bites and I finally remember the bug spray before we go down the hill to the beach!

However, I can get stuck from time to time because I get too wrapped up in myself and my challenges, that I loose sight of the big picture. To elaborate, I unfortunately have more than a few people I care about who are struggling and in need of help right now and I feel helpless. It is hard knowing that someone you care about is experiencing heartache and there is so little that you can do to help. My heart and soul are all in, but my body will not cooperate and do what it is told. I think this is the most frustrating of my circumstances.

Then my humility kicks in and I realize that I am really not all that important, they are surrounded by loved ones and friends. My presence is not going to cure them, heal them or change anything really. My heart and brain work fine, my body is far less significant in communication of love. Being there for someone is doing for them what they need you to do, it is about them. Let’s be honest my greatest gift has not been my body since I was twenty; it is my heart and soul others need from me now. Not every challenge is a huge one, but the confidence and skills you can gain from each one is quite valuable.

If we burden ourselves with what we are not able to do, it might leave us unable to do anything well. Often times we focus on what we didn’t get done, or what we failed at, that we loose sight of the things we did well and allow ourselves the moment to feel good and celebrate life.

Take Home:

ü You can only do what you can do, period.

ü You can make a difference.

ü Celebrate life for what it is and enjoy.

The Crab Crawl

2012-06-29T17:28:00.000-07:00

Shortly after my last post, that day in fact, I had a bad fall. I had been practicing my walking skills outside of my home, something that scares me to death.

Inside my home I am able to control the environment to some extent. Most of the hazards are identified, I have developed a routine that is safety-driven getting around my home and have worked hard with my family to help me avoid accidents. Outside of the home, however, controlling variables is much more difficult and that is what scares me. This fear has held me back, literally took the strength right out of my body and kept me from aspects of my life.

Then there I was in my own yard and my own dog was playing and knocked me down; knocking both my feet out and to the front. I fell hard directly onto the base of my spine; my worst fear had just been realized.

Ice, ice and more ice!

It took two weeks for me to independently get around. Literally enlisting the help of a fourteen-year-old girl to get to and from the doctor, I was not in great shape for sure. I kept thinking, because that is all you can do when you are stuck, about getting “back on the horse.”

Not feeling much like fighting or rallying I was yet again at a crossroads. I had not been to aqua PT in weeks and was feeling physically and mentally weak. I am not sure if I believe in fate, but I have faith in something greater than myself and I asked for help. This was not my first time experiencing that moment of “sick and tired of being sick and tired” and I now had a new type of insight into my physical recovery journey. After a retrospective of the last twenty years of my life some things became clear and I began to use strategies learned in “the halls” all those years ago.

Two days later…”heading to the beach!”…Me too damn it!

I had thought about the plan for quite some time but could I really pull it off so gracefully and efficiently to actually get myself down the hill, along the path and to the water?

It was the graceful part that I couldn’t pull off, due to the fact that the plan included sliding down a grass hill on my bottom. Yes, I did. I got across the street with my son’s walking stick got down on my kiester using all the upper body strength I could muster I gently slid myself down with hands and feet. Then I used the stick to get up and walk on the path toward the water where I was able to pull off a dive in five inches of water.

What a glorious feeling! I didn’t just eliminate the barriers I destroyed them because I was feeling triumphant. I enjoyed the water with my three men and we have a great family memory to add to the list. I then climbed the hill on my hands and feet, the crab craw, and stood up with the aid of the stick only. All three cheered in pride and I felt like a champion.

I had gone from a very dark place in my head where things were hopeless to feeling like an Olympian in a matter of days.

The take home:

If you feel hopeless you need to reach out to someone you trust. The place you go to in your head when you feel hopeless can be toxic and insidiously destroy all that is important to you. You can’t really trust yourself fully when you are in a true state of hopelessness; it is like a drug that distorts reality. Please heed my words and learn what you can from them.

Eliminating Barriers

2012-06-09T13:58:00.000-07:00

Eliminating Barriers

I hate writing publically when things are not going well, as you can see by the lack of blogging, things have not been all that easy for awhile. I went through my private journaling and notes in margins throughout the past month and the message is definitely pain and frustration.

This past month has brought substantial secondary medical issues, medical problems due to the original medical condition. Due to the location of the cysts in my spine several nerves and significant bodily functions are involved. I have two cysts in the sacral area and a third in the sacral joint on the right side. The latter has created itself out of the fluid from within the sacral joint; this causes discomfort and pain when I use my right hip. The two Tarlov cysts cause more problems. I now have a hole in my iliac bone on the right side from erosion created by the larger of the two TCs. Nerve damage leaves my right foot numb, shooting pains down the leg and an inability to stand steady. The involvement of the cerebral spinal fluid causes headaches and is complicated by dehydration. In addition this causes symptoms to fluctuate daily, I might be fine one day and unable to walk the next. Finally there is no cure and the only means of treatment is symptom management.

Since the first Tarlov cyst appeared following a car accident in 2005, my health has steadily deteriorated and the chronic pain lead to depression. Then I took control of my health; I lost 85 pounds, ate nutritionally for my body, requested aquatic physically therapy (traditional PT can cause damage) and gave it all I had, and I quit smoking.

I reached the level of using my wheelchair very little in the house and made incredible and unforeseen progress toward being less wheelchair-dependant. Then the secondary medicals started to wreak havoc in my body. After all my hard work this was a huge disappointment, which lead to another depressive episode.

In short (and without too much boring detail) the neurologic involvement has caused organs to become involved and this resulted in many backwards steps in my recovery journey.

I have not been able to attend PT in nearly four weeks, gained ten pounds, and for the last week and a half I have hardly been able to walk at all. Basically I have lost the last three months of progress in a matter of three weeks. This is frustrating beyond words to say the least.

Aside from the typical mother fears, my greatest fear is becoming a burden to my family. When you NEED your ten year old to get through an ordinary day it makes you really think about what you might be taking from your child. His childhood?

I was very young when my Dad died so I am sensitive to this issue and want to ensure they know that just because your Mom is broken, you are still the kids. My own mother was amazing at asking for help but ensuring I did not take the worry that went with what ever it was at the time. I strive to meet that balance on a daily basis.

That being said, I am a fighter and will never give up, even when I want to because I know quite a few people who would kick my ass if I did. This is life, it is full of barriers and we just need to keep eliminating them.

Surgery will fix the most pressing secondary and then I can start over again at the pool. I miss the pool and the people there, because of who they are I am sure I will be walking again in no time.

A few days, okay weeks, of feeling like life is not fair and why the hell is this happening to me and I am ready to fight on. There are a few people in my life who provide me strength and give me that mental attitude of, “If they can do that, I can do this.” They have shown me that you can have the worst circumstances and still push forward with the right people, the right attitude and a toughness deep down inside.

Sorry, kind of a depressing piece this time but, it is my journey.

Take Away Thoughts:

ü Eliminating barriers is what we all do, or need to do, in order to have the best life possible for our families and ourselves.

ü We need to take control of our lives; it is true good things happen to good people, but not without hard work, determination and a positive attitude.

ü Under no circumstances should you treat me or approach me with pity, but your support and smiles are of great strength so keep those coming!

Where to Begin: A Catch-Up

2012-04-01T14:12:00.000-07:00

My life has been less than easy over the past few weeks, however, I have made some huge successes. Some of them less pleasant than others; I have not had a cigarette in 6 days and 14 hours! Other points of interest, physical progress, episode of marked depression and family joy… no I’m not Pregnant.

Smoking is all I seem to think about this past week, so we will start there. I had chest pain on my way to physical therapy (at South Shore Hospital) and it increased on the way. I got nauseous, sweaty and scared like never before. The short story results, I'm fine.

This experience was nothing I ever felt before, I have been chronically medically complicated but never with the implication of death, or so I had rationalized (smoking). This fear was my “moment” and brought me to a place of fully wanting to quit. There was always a piece of me that wanted to smoke; on some level I enjoyed smoking. After my moment I found that I resented cigarettes. It became clear how much they owned my life, down to daily experiences. For example, I would not make it through any of my son’s baseball games without sneaking off to my car to have butt. More than once missing something great, but that never stopped me from going. That right there is the definition of addiction, if it interferes in a negative way in your life. Of course I had always intellectually known all of this information, but ALL of you needs to buy into the idea of stopping in order to be successful when it comes to any addiction.

I quickly came up with a plan, set the date for the following Monday, which was 3 days away. I made a list of tools (gum, water bottles with squirt tops, the patch, etc) and a list of stress management techniques (exercise, eat something, make jewelry, take a shower, etc.) and ways to not lose ground in my weight loss journey.

I gave myself the first week (ends tonight!) to indulge in sweets if I needed to get through an insane craving. After this I need to be pretty strict with what I eat, but allow myself small treats as I have been all along.

My physical progress has yet to plateau and I am feeling pretty confident that I can handle my current status and as long as I can get to the beach I will be good! We are working on that now, trying to find an old golf cart. It wont be Nantasket, but I will deal with my little beach just fine.

The depression, well I think I was defeated by my losses with the big corporations regarding access to those with physical disabilities. It became so frustrating and I was perseverating on the utter unfairness of the whole thing and was stuck. I have since returned to using that anger to fuel my personal energy. Having a mission definitely has its ups and downs, it just get a little complicated if you have depression issues. So I did what I do, I isolated and just tried to survive each day with some resemblance of normal for my boys’ sake. I lost interest in making jewelry and I could not ensemble the words to keep up my blog.

Like every other depressive episode, I came out of it in my own time and my own way. I knew what was going on, I knew my symptoms were increasing and recognizing the signs of a deepening depression, yet there was no way I could stop it. I had to ride it out. I recall the moment that started, the spark if you will, the change and my journey back to my baseline. I was in the shower, where I think best. The water was really hot and aimed at my sore muscles and I was feeling sorry for myself. The muscled in my mid back were killing me from an unusual amount of rolling in a chair that was trash 15 years ago. This is of course because there was a delay in the insurance approval for my new chair because my chair is only approved for indoor use. No frigging clue what this is all about, I guess I don;t really need to leave my home but really? Therefore my custom order was rejected because it included the tie down anchors and a removable hard back. Finally we resolved this issue (by removing them from the order) and my new chair was just approved for construction. So I was feeling like I was being “picked on” is the best way I can describe it. Feeling how unfair life can be... this brought me to another thought.

I recalled the day I was scheduling four weeks worth of PT sessions individually and bored to death. I looked over and saw the cutest little girl. Such a fashionista, she had on leggings with this short stylish skirt with knee high boots and a faux fur vest with a belt. She looked like she belonged in a magazine with her hair all curly and growing out a mini-fro but with more defined curlets, Adorable! I could not help but comment on her outfit, she was about four or five and she started chatting me up. She asked what I was doing and I was telling her and how I have to do my therapy in the pool. She tells me, “I love the pool. My Grandma has a pool. I just have to take my leg off and get my swimmies on and I can go all around the pool.”

Bam! Reality check. The timing was perfect for me to have this particular memory.

I will conclude with my family joy. My oldest son had a significant Scouting ceremony IN THE WOODS. I was so determined to get there. I am always passing down the stories of being part Native American, Cherokee to be exact, and this was a Native American based ceremony with dancers. The meaning was that of crossing over from a Cub to a Boy Scout. I compare it to many of the religious ceremonies that represent the time in life when you are no longer considered a child by your people. I was determined to be able to get to this event, I had to see this and watch him cross over. I felt like I was training for a marathon! As it turns out, the Scouts and my husband came together and there were no roadblocks getting up there. The ceremony was great and yes, I cried.

~And I just completed another first, I got through my first writing piece without a cigarette!

The Wheelchair Fashionista!

2012-02-29T21:06:00.000-08:00

Prior to the wheelchair journey I had been on a weight loss journey for a little over a year. I am happy to report that I shed in excess of 75lbs prior to the wheelchair and continue to achieve small successes in this area. As you can imagine I have thought several times over how grateful I am that I lost that weight before I had to wheel it all around.

I had in fact just achieved a great milestone, a weight I have not seen since my mid-twenties. The ability to buy off the rack, have three times the stock available to me in my size and soon a long lost love for fashion began to resurface. A long time ago I was a tall slender body that could wear anything well. For a short time I mixed it up and shopped the thrift stores, making my own new looks, even did a little modeling. Then school, work, husband, kids, basically life happened and I lost time and interest in fashion. I became a sweats and T-shirt type of gal, one who was slowly packing on the pounds.

Once the accident happened it appeared as though any aspirations toward weight loss were shattered. This, coupled with my inability to mobilize for a few years, resulted in additional weight gain. I found myself more than 100 lbs overweight, literally broken, I had resigned myself to the fact that there was nothing I could do to change. I lived this life for too long, and then one day something just clicked. I struggle to find the words to better express what happened. The best I can do is to say that it was as if a thick fog suddenly cleared.

Amazonite Cluster

My reaction to this moment was a profound realization of the obvious. It might take me longer, but obviously there was something I could do about my situation. I may never be red carpet material, but I can do a hell of a lot better than this! Yes it did feel like forever, but in retrospect I spent five times as much of my life feeling bad about it and doing nothing. I enjoyed that control and relished its glory; in theory I could go out and buy up all kinds of fun clothes. I say in theory because who the hell could afford to do that in reality. I did, however, find myself buying fashion magazines again and exploring a few thrift stores.

Fancy Garnet

I was just getting into it when the chair happened. Do you have any idea how hard it is to look cool when you are sporting a wheelchair from the 1950s!

Now I am no longer “a tall drink of water,” as Kay Flynn used to say. I am a sitting all the time person who can no longer handle a pant with a button. I am not talking about the jeans I need to lay on the bed to zipper either; any pair of pants with a button is out. This brought me right back to the days of sweats and yoga pants right away.

That being said, I have attended a few parties and events since being in the chair and began to experiment with the clothes I had, along with some accessories and gave it a go. The last event I attended was particularly important, as it was a fundraiser and a few of my jewelry designs were being raffled off, therefore I felt a sense of pressure to appear fashionable. Luckily, I have a sister who works for Levi and it is her job, and her passion, to know fashion. With her advice and a few good fashion magazines I was able to construct a reasonably relevant and interesting look.

This little fashion success has ignited that old passion and I find myself daydreaming about ways I can alter certain items, make them more flattering and not have to choose between high fashion and sweats. I can live somewhere in the middle, somewhere that exists in the real world not in a twenty-something’s vision of herself and her fashion. I have to ditch the overwhelming accessory; the 1950’s chair just has to go!

~Any day now my new wheels will arrive and my new fashion statement will be, everything goes with candy-apple red and golden flames.

Just Roll With It

2012-02-23T13:38:00.000-08:00

Just Roll With It

What do you do when a key player in your recovery needs to move on and leave your team? That is the question I face today.

In my years working as a treatment team member for the clients I served this was a fairly common occurrence. People in the field of community mental health services do not typically stay in one position for very long, many get promoted or move on when they finish their educations. Although it was frequent for us, we always made sure to mange the client’s loss as best we could. Try to prepare them to accept this change and give them the tools they need to adapt. Of course not every transition was smooth because this is real life and given all the variables not every theory will work in practice, but we did the best we could.

Today I learned that one of the most significant players on my treatment team has left. That is correct left, as in past tense. Whoa, curveball.

I had used my knowledge of treatment teams to establish the perfect team of players. I took my time and put in a lot of thought when putting my team together and carefully chose service locations and affiliations to customize my team. When given the option I would choose the best player on each servicing team. This particular member was handpicked and loosing him will have a significant impact on my team.

This brings us back to the question of what to do about it. My first reaction was fear of failure, on my part. That without this perfect team I assembled I would not be capable of succeeding with my recovery. After the panic subsided, I realized this was just life and all those unforeseen variables that go along with it. I have no control over this, which brought me to another of my favorite tools, the Serenity Prayer.

Recalling this made me bust out into a laugh as I had a flash of the time I used this technique just prior to an inspection at the site of my very first managerial position in a group home, as they called them then. I was so green! I was practically running up and down the halls rechecking everything just before they were scheduled to arrive. I was reciting the Serenity Prayer in my head as I checked bedrooms, or so I thought. You would not believe some of the things you can find in a resident’s bedroom just prior to an inspection, especially if they do not like you or are currently annoyed with you. I fly up the stairs to check the second floor bedrooms, still reciting the Serenity Prayer. I hustle down the hall and as I turned to come back I saw one of the residents looking at me with a very strange expression. “Are you okay? You have been running up and down the halls chanting, do you have a PRN?”

For those of you who do not know, PRN stands for “as needed” in the medication world. Many residents had PRN medication for an increase in symptoms, to help manage them beyond their regular dosages.

That put things in perspective then, and again just now.

~ Just roll with it.

Setting Limits: You Can’t Make Everyone Happy and You Shouldn’t Try

2012-02-21T11:33:00.000-08:00

Setting limits is a lesson I am still learning, I am not quite proficient yet. I have found this is a skill that requires a great deal of real life experience in order to acquire the knowledge needed, and the confidence to use it.

I have observed many other who do posses this skill, I studied their behaviors so as I could imitate them later myself. You see I was a supervisor, and being able to set limits was essential when working with staff. I had many great skills as a manager, but setting limits was not one of them. Those who had been around awhile could smell the blood in the water and I was tested to my limits. I found that I was covering direct-care shifts so staff could take days off, doing an overnight because a staff member had a child to care for which I later learned did not exist, and I had more sick calls than any other manager. Therefore, if I did not have this skill of setting limits I would have to rely on my old standby technique for life, “fake it ‘til you make it” and thus the careful observation of those possessing this talent. I can pretend like the best of them, but in truth it takes a great deal of energy to pull it off.

For myself, the real struggle comes from wanting to help and wanting to please people. Intellectually I can acknowledge that the inability to set limits helps no one. In order for any relationship to work, be it professional or personal, we all have limits and they will be tested. Yet, in practice I find it extremely difficult. A wise woman once told me, “There are those who respond with their brains and those who respond with their hearts, Honey you are the latter.”

I thought about this statement for some time now and have contemplated if this was a good thing or a bad thing. I guess a balance of the two is ideal, but I could never be the former, I have tried. Which would explain why my transition to education and training in the field was so positive, I was able to engage in all of the aspects of being a supervisor just short of having to give corrective action. It was perfect.

Truth is this did me no favors in real life, because I still needed to learn this skill. I came to realize, with some coaching, that it truly is easier to say no than deal with the ramifications of not doing so. For example, if someone were to drop his or her child off at my home without prior knowledge and just drove away, I would not call them out on this behavior. Really? Yes this really happened, not one of my best moments in retrospect. I called on another of my favorite reality-checking exercises, if this were one of your clients what would you say? This is where I question how hard would I advocate for a client in this situation and what recommendations would I offer. I then go through the process and eventually decide that I will do equal for myself as I would for those I serve in the community.

The answer was obvious when I considered it under these circumstances. The next question was how do you establish limits with someone who has bowled over you for years? Clearly and bluntly appears to be the shortest distance between to points, however, do I have what it takes…and then it hit me, I am spending way too much thought and energy on someone for whom I have little respect. I needed to show some self-respect, bang it was clear as day.

Then feeling sheepish for my lack of self-respect, I examined those around me and found I am not the only one who suffers from this flaw. I see it clearly now, those who take and those who give too much of themselves to keep the balance.

Unfortunately, the takers of the world can spin us off track and we end up spending our energies in the wrong places. We all know these people but just to be clear, I am a huge supporter of the “it takes a village” motto and believe we all need to work together for better communities. Those I am referring to are the people in our lives who create chaos, don’t play by the rules, and test our patience on a regular basis.

Some examples:

The individual who charges you full rate on babysitting when you needed it, but a few years later does not pay you for babysitting when they need it.
The individual who says yes they will gladly take your client list so you can leave the country, but then a few years later offers you their client list for the same reason for the rate of ten thousand dollars.
The individual who accepts drink after drink, but never buys a round.
The individual who says they don’t smoke but what they really mean is they don’t buy smokes.
The person who complains that their life is awful, needs your help constantly but wont do anything to change their circumstances when they are given the opportunity, yet continue to depend on you to make their lives function.
Or my favorite, the individual who only calls you when they need something.

So how do we incorporate these people into our lives, or do we? If you reflect on it and realize that this individual just is not worth your time nor your energy and feel comfortable letting them go, by all means do it. However, in many cases we need to continue the relationship for various reasons (i.e., you are related, you love the individual, it is professional, etc.). In this case we can exercise some control and manage these relationships without hurting ourselves. The only way to do that is by setting limits and being consistent.

Only you can judge where the limit stands but here are a few simple guidelines.

Protect your space. Personal space is essential to feeling in control; your home is your space. Unless otherwise instructed all individuals should knock before entering your home and should never find themselves in your bedroom, unless invited of course.
Share only what you want known. In this day of facebook, twitter, cell phones, etc., it can be difficult to maintain privacy. So if you don’t want a surprise visit don’t tell the world where you are.
When your response is no, say NO! Don’t set yourself up to fail and take on more than you can handle. Eventually your house of cards will fall and no one will benefit, especially you. There is no feeling worse than trying to be helpful to then only make more problems because you could not follow through, even the feeling when you say the word no.

Snap Out of It!

2012-02-14T08:25:00.000-08:00

There are times when we need a reality check; when we get too involved in ourselves and lose perspective on life. There is a clinical term used when working with the mentally ill that is actually called Reality Checking. Sometimes we can get so wrapped up in our problems that our brains can become a feeding ground for internal chaos. When lost in this internal chaos, a slight detachment from reality does occur and prompting from someone in your life may be necessary to point this out. However, stay away from the stereotypical slap across the face move for this is not actually helpful.

Ways to detect that you have experienced a split from reality:

ü You in fact think that you are the most important thing in the world and without you life would cease to exist. (i.e., You arrive at appointments when you get there, not when you are supposed to or when you are scheduled to get there.)
ü You no longer think that rules apply to you because of your circumstances. (i.e.,You are in a hurry for the train so you don't wait for the light and dart into traffic causing others to make accommodations to avoid hitting you.)
ü You lack the insight to see that others around you are suffering too; the drama queen. (i.e., You may have totally valid issues in your life, but don't make issues where there aren't any.)
ü You think that the rules of life should change because of your circumstances. (Closer to home, i.e., thinking you shouldn’t have to pay your bill because it is the same company for whom you have intense feelings of contempt because they took...)
ü Or my favorite, nothing moves until you do. (i.e., you can stop in the middle of the street and let your friend catch up and get in the car while me and all the others cars pile up behind you because, well, we can just wait.)

If you think you might need a reality check, or someone in your life thinks you do, visit Children’s Hospital in Boston. There is always someone who has it worse than you and we must be humbled by the magnanimous strength of those who handle life with such grace. If a six-year-old child can accept they are going to die, than we should be able to just suck it up and be grateful for the life we have.

This is not always easy; in fact it can be quite difficult to change your perspective so colossally. In order to think of others we must be able to first understand that we have more than we think we do and second that we are not only here on this planet for ourselves but also to honor and celebrate the lives of others, and three that we have control over many aspects of life.

My favorite technique for identifying what to be grateful for involves a humbling moment, such as the above mentioned visit to Children's, followed by creating a list of all the things that are good in my life. When I look at the list I realize I am very well off in the love department, three great healthy men, one fantastic guard dog, and we have everything we need to be happy.

In spite of the latter, I often find myself in a mode of anger, resentment and experiencing every human's worst enemy, self-pity. The key is to take note of others perceptions of your behavior, statements, and emotions. Most likely you will not have to solicit this feedback, typically others are offering their observations independently. An important aspect of this process is to be open to receiving others perspectives of ourselves.

Several times in my own journey, I have become defensive quickly and required some time alone to process the feedback I was given. This allowed me to open up enough to examine the statements regarding my behavior, emotions, dispositions, etc., it is through this examination and attempting to see my actions through another’s eyes that allows me to transpose my perspective.

It is natural to get over-involved in ourselves; we fail to see beyond our own little world. I know how easy this is with kids, homework, sports, activities, dinner, laundry, work, and the million other things we do each week. However, I challenge you to think of others after this posting and do one nice thing for someone else just to add a little positivity to the world. Make someone laugh, allow a car to enter the lane ahead of you at the merge, resist yelling at the “stupid driver” in front of you, smile and say hello to someone who looks unhappy, call a friend to say thanks for everything you do, call your Mom and say I love you, hold the door for someone, whatever it is just take the control to make a difference for someone other than yourself.

~Moonstruck (1987) "Snap out of it!"

Bargaining: An Interesting State of Being

2012-02-11T14:49:00.000-08:00

Typically bargaining involves an individual learning to accept that they are going to die and they simply want more time. We have all seen this clear, black and white, version of bargaining in the movies. For example the man in the water with sharks swarming around, “God, if you let me survive I will….”

I have found myself saying things like, God I will accept this if… As if I have any control of the circumstances, as if I will refuse to accept it otherwise, or something like, all right I will deal with this but not one more thing, I just can’t do it!

I believe bargaining is a personal journey, one that involves deep thought and reflection of life. It is a time where you are just starting to grapple with the idea that the circumstances are in fact reality.

I am learning bit by bit how to accept and through the use of bargaining it implies that I have some control over the situation. When you have no control over your own body it can create real control issues for sure. I believe the concept of bargaining, with whom ever, allows me a small sense of control over the situation.

This was a quick yet very introspective stage for me and I have spent little time actually bargaining. Instead I spent more time examining my life and going through the process of discovery within myself. For example, what really matters in my life and can I still be happy under these circumstances of my life. The obvious, thoughts of can I live this way and how. I made lists of what made my life worth living under these circumstances. What I learned was little changed in my life due to having to live it in a wheelchair.

I then made list of barriers. I smile as I type this because that was the office motto, “eliminating barriers” and I always resort back to my experience working with the mentally ill. My list of barriers although long, was not unreasonable and several would be easy to address. This led to a list of problem-solving ideas, which led to a list of jobs for my husband and his brothers to address. Slowly as my house becomes adapted, life gets easier and routines develop. I have to say I am still thankful for limitless hot water because that routine is still a long process.

Ironically, I had always underestimated this stage, bargaining, in the grief/loss process. Now I know that as ridiculous as it is to negotiate reality, it does get the job done.

Here are some of my favorite journal entries regarding bargaining:

¨ I will live in this chair if my kids never have to experience such a thing ever.

¨ Okay, I will do this but you need to promise I won’t have to deal with anything else this difficult.

¨ I will give up my legs if you can fix the nerves so prosthetics will work. *Overlooking the obvious, if the nerves were fixed my own legs would work.

¨ And my favorite, OK GOD! ARE YOU LISTENING BECAUSE I AM PISSED! I NEED YOU TO FIX THIS BECAUSE I AM NOT DOING THIS ANYMORE!

Needless to say none of the above were logical, realistic or maybe even sane, however, they somehow made me feel better.

I have of course made my apologies; don’t relish the thought of possibly making the Big Guy mad.

Accessibility: Is Quincy disabled-friendly?

2012-02-07T12:42:00.000-08:00

Quincy is an old and historic city located just south of Boston and has been home for the majority of my life. I was raised here, went to school here, and thought I knew this city well. It was not until I was sentenced to the chair that I noticed how incredibly inaccessible Quincy is as a whole. There are several small business owners who have taken the steps to ensure that their establishments are accessible to all residents. Many of them have done so because of the Americans with Disabilities Act, ADA, standards requires certain measures be taken.

Who regulates these laws? How many people really take note? I must confess I did not take note prior to my condition worsening and requiring a wheelchair.

I took it upon myself to do a little checking around the online law libraries, talk about access! The result was a return trip to see my old friend from “A trip to the bank”, the bank manager. First we drove by the bank and took pictures for documentation, a requirement in filing a claim. I pulled up and told the boys to go over and take pictures of all the wall space around the entrance, documenting there are in fact no buttons. Put together what else I would need to file a complaint under the ADA regulations and then I made a return trip to the bank.

I rolled up to the door. There where two individuals, one man and one woman, standing by the entrance. They looked familiar, former clients maybe, and each grabbed a door pleasantly and I was able to enter the bank with ease, however, not independently.

I rolled myself up to the main customer service; there he was standing behind the oversized work surface taking on the phone. He was focused and did not notice me, or at least did a good job pretending he didn’t. After a moment or two I started scribbling on a bank appointment card. I wrote, tell your boss ADA complaint in 30 days if the button is not installed.

He hung up the phone just as I finished writing. He looked down and he met my stare. The sound that came from his mouth was something of a sigh but more like a Lamaze Breathing technique. At this point I was sure I did not need to introduce myself, but did anyway to read his reaction. As I introduced myself and began refreshing his memory of our previous interactions, he began nodding and looked to the ground.

I passed him my note and told him to tell his boss that the crazy lady in the wheelchair is not going away. Tell him I have already taken the photos I need to file a formal complaint. He appeared relieved; his shoulders relaxed a little, he took a deep breath and released it slowly and the furrowing on his forehead began to fade away. He asked if I had a transaction to be completed. I replied no and he said with a bit of a smile, “Then allow me to get the door for you.”

The ADA makes accessing information, standards and resources exceptionally easy for individuals and businesses to reference. The standards were revised and published in 2010, making the expectations of small business owners quite clear. The standards are simple and easily translated into common language in order to ensure comprehension by all.

Bewildered at the lack of access I have been encountering in the city, I decided to perform a little reconnaissance. I drove through the city with my boys, the mission; detect wheelchair accessible buildings and those that are not. We drove down main streets as well as through small neighborhoods collecting data along the way. I then took to the sidewalks and conducted some field-testing. I used handicapped parking spaces, rolled the sidewalks, utilized crosswalks, visits to historic structures, other existing buildings and new construction. Field-testing was a bit scary; going over large deformities in the ground beneath me, attempting to navigate my chair in traffic in order to access the sidewalk and realizing I am the size of a child and those driving cannot see me!

The preliminary results reveal that genuine America exists in our great city; nearly every small business had accommodations, or made accommodations, to allow me full access to all they had to offer. In many cases I received better service than I had anticipated. For example, a visit to a local restaurant for a special birthday dinner was a wonderful experience. The building was historic but had been modified with a perfectly designed ramp up into the receiving area. Two staff members moved tables, made chairs disappear, and I had tremendous space in what seamed a small place. We were not in the corner either; other couples having a nice dinner together flanked us as we had our moment. It was one of the few times I felt just like everyone else again, it was as if my chair just disappeared.

The unfortunate results contain anecdotal evidence that big businesses are ignoring the needs of the disabled here in Quincy. I considered the financial burden of modifying existing structures, but the “little guy” seems to be meeting that financial obligation so this is a moot point. Does this reflect a lack of client demand; the “big guys” can afford to lose the business of a few prospective clients? Or is this perhaps the result of a dwindling customer satisfaction approach, the actual desire to make the consumer happy.

Not included in my current field-test findings, was a trip to Quincy City Hall just weeks before I was sentenced to the chair. I was using a cane at the time and the handicapped entrance was farther away, therefore more walking which I was becoming increasingly bad at. That door had a button to open it for an individual in a wheelchair but the front doors had to be opened manually. As I was leaving City Hall I had a conversation with the Mayor. I explained that the large glass doors where extremely difficult to open and stated that if a little old lady with a purse and a cane were to attempt opening the door it would be very difficult. He looked me in and stated that they were planning on installing a button on that door already that they had considered this in the new plans, and he opened the door for me as I exited. I have not revisited City Hall since so I do not know if the button has been installed on the front doors, however, I think I will add them to my list of follow-ups.

Depression: The Social Stigma

2012-02-03T20:15:00.000-08:00

When I made the decision to chronicle my journey I also made myself a promise that I would be real. Often I will put on a face for the crowd and allow everyone else the ease of all is well. However, if I do not share the truth here what is the point of what I am doing?

That being said this is by far the most difficult topic for me to discuss. The reason is that although I advocated as loud as I could for those with mental illness that we are all equal citizens and deserve human rights, I knew I was fighting an uphill battle. As loud as I shouted my voice was always overshadowed by an unspoken acceptance that this equality is not a reality. Individuals’ who suffer from mental illness are one of the most discriminated against classes in the United States. The social stigma associated with mental illness is incredibly strong, cross-cultural and deep-rooted. I honestly do not believe that I will live to see the day this injustice is resolved, but I retain hope that generations to follow will see this transformation.

Stigma, in this context, is defined as “a symbol of disgrace” (Webster 2012). Some well-known historical examples of social stigma include mental illness, physical deformity/disability, and of course those associated with race, color, creed, religion, etc.

There are many reasons, too many to address here why this social stigma exists, but I have studied this at length. In my trainings I would often emphasize to new staff that it is important that we all understand that mental illness is no different from a physical illness such as diabetes, yet we as a society do not view them in the same light. That it is our job as advocates for the mentally ill to try and change this regrettable fact

Through working in the mental health system for many years I learned a great deal about people in the field. Some believe in a cause and commit all they have to it; these are the people who truly do not judge. Then there are those who believe in the treatment of mental illness and the greater good, but somehow still see themselves as being different from those they serve. It is the latter group that I am most aware of as I write today.

I feel confident stating that I was good at my job, whichever role it may have been, while working in the field of mental health. Well, that is not totally true, when I was assigned Thanksgiving at my first group home, I could have poisoned them all. I was twenty-three and had just moved out of my mother’s house less than a year prior, I was in way over my head. Luckily, my first case management client, Mr. X, came to my rescue. See, Mr. X was great in the kitchen, and he was nice enough to care about me so he helped me prepare Thanksgiving dinner for the home and I got to save face. Incidentally, Mr. X also taught me how to utilize the mirrors when driving the big van, how to pump gas, and how to use the company credit card to pay for the gas! Mind you, this is a man several people had dismissed over the years; he would talk to himself continuously and make repetitive arm movements and gesture, none of them obscene however. That was unless you asked him a question, and then he would cease to self-talk and answer your question, even have a conversation, and then return to his internal conversation.

Throughout my career I always made note of the staff that came across as judgmental, it is amazing the amount of emotion and negativity that can come through in a staff member’s (including management) progress reports when reviewing clinical notes!

I would make a mental note and work with these individuals in a way that would promote objectivity and how significant a factor this is when working in the field of mental health in particular. The point being I know how many individuals in society, even those within the mental health system, who, knowingly or not, are in fact judgmental when it comes to mental illness.

Therefore, the hardest part of this whole process for me is the depression, experiencing these feelings that are also intertwined with beliefs that others would view me as being inadequate. That admitting I am suffering from depression somehow discredits my education, work experience, skills and talents. My close friends and I have an inside joke (well I guess not anymore) that I throw out as often as I can that I have a Master of Criminal Justice degree from Boston University. We make fun of my pompous voice and tip-upped nose, and I always reply with if can’t use it I at least have to tell everyone I got it, the damn thing cost me a fortune!

Truth is, I am always trying to validate myself; that although I carry a “label” I am still worthy of being heard and what I have to say is still valid. Truth is it is probably more valid having been on both ends of the system.

Depression is so difficult to cope with not because of the overwhelming sadness, but instead because the shame. I know from my years of experience in the field, an individual’s support network can be enormously significant in successful recovery and management of various types of mental illnesses. Often times this was a difficult barrier to overcome for people, and many had only providers as support. I had always attributed this in most part to the fact that many of these individuals had been alienated from their family and friends due to the symptoms of their respective illnesses, as well as, the social stigma associated with mental illness.

Today I have a new perspective. Due to the shame, which correlates with the social stigma, I see the magnitude of the barrier toward establishing a network of supportive people. We are afraid to admit we are having a problem with depression to the very people we should be counting on as our support network.

How do we change this? Like anything else I suppose, break the cycle of silence.

~Hello, my name is Johanna and I am struggling with depression.

Graduating Supervised Aquatic Physical Therapy

2012-01-31T14:25:00.000-08:00

Last Thursday was the day from hell in terms of what needed to get done. In the chaos I unintentionally missed my re-evaluation with my land physical therapist, Debbie, and my aquatic physical therapy appointment. The problem was this; I typically go to my aquatic PT the same time twice a week in the evenings. However, due to my re-eval I was scheduled during the day and completely forgot.

I showed up at my usual time in the evening on Thursday for aquatic PT and the first thing they said to me was, “I knew you wouldn’t no-show.”

What? No-show? Then it was exlained to me the blunder I had made. They, being the wonderful people they are, let me in the pool anyway. I was doing my warm-up exercises, which in and of themselves are a workout, and my fabulous and sweet aquatic physical therapist, AnneMarie, came and sat on the edge of the pool.

She looked up my notes from the missed appointment with Debbie and explained that she and Debbie had spoken and I met all my goals! I graduated the program and this was my last official appointment.

Good thing I was in the pool because I would have fallen over! She went through my goals, my new ones from the last re-eval, and I had surpassed them tremendously.

Wow. She went over my starting abilities and my abilities now, and I have to say I was impressed.

Now, I will move onto a transitional program at the rehab, which allows me to continue to attend group aquatic PT twice a week. My appointments have overlapped the group PT sessions since I began at the rehab, except for those damn daytime appointments I can’t seem to remember. Basically, everyone is in the pool together but each individual is working his or her own individualized therapy program. All the same staff will be there and available for questions or advice.

Having said that, I feel much the same way as I did graduating college, I need to grow up now and do it on my own. This is indeed a mixed bag of feelings. Pride of course, but also fear and apprehension about taking control of my PT program.

The other fearful aspect involves self-motivation. There will no longer be appointments, nor staff scheduled to work with me, nor tracking of data and progress, no one else to be accountable to for showing up to PT. It is all on me now, I am only accountable to myself and my progress is now solely on my shoulders.

I have little doubt that I will be able to continue to work hard and attend my sessions, because I have learned a valuable lesson in life that applies here. Sometimes we struggle to believe in ourselves, but if we trust those we love and respect, their belief in us can carry us through. I know that I have many people in my life who believe in me and in what I can accomplish, for now I will just have to trust in them.

I start the new program next Tuesday; I will push through my fear of “flying solo” by just showing up. I have learned that just showing up in life is the first, and biggest, step you can take toward adapting to change.

Stage Two: Anger

2012-01-25T16:23:00.000-08:00

The five stages of grief and loss (the Kübler-Ross model); denial, anger, bargaining, depression and then acceptance, are by no means linear. We move in and out of these stages throughout the process and I have been finding myself returning to the second stage; anger quite often lately. I am told this is actually a good sign, that among other things it indicates that my self-esteem is still intact.

However, anger is not a good feeling to experience, yet I understand that it is fuel for my fire. Essentially I need to experience a feeling of justice; I need the entity responsible for my situation, life in a wheelchair at age 40, to not be me anymore.

The response I got from Comcast was a letter dated December 29, 2011, included some of the following statements, “As a result of late notification of the incident, it is impossible at this point for Comcast to conduct an investigation…” and “…the other vehicle was not owned by Comcast, but rather by Merchants Rent-A-Car.” The worst statement, “…based upon your failure to report this incident in a timely manner…”

Just as a reminder for those who have not been following my story, in 2005 a Comcast truck, a large vehicle with the logo Comcast on all visible surfaces, hit me from behind. However, the registration information indicated that the owner of the vehicle was Merchants and that Comcast leased vehicles from them. I am very familiar with this process as while I was managing a group home, the vans we used for the programs were leased through Merchants as well. This leaves me with the question, is this a way for Comcast to protect themselves from being sued?

Angrier than ever I must find a way to achieve some form of justice. At this point I am not real clear on how to accomplish this goal. I know what I cannot do. I cannot sue them for monetary damages. I cannot break the law to obtain my justice, not that this didn’t cross my mind briefly. I cannot count on the Ambassador for Humanity Award recipient for 2011, the Comcast CEO, to express any humanity toward me based on the letter I received from them.

My current thoughts include:

~Is there really something to investigate regarding the use of rental services, or possibly subcontractors, to protect Comcast from being sued? Or is this my mind reaching for alternative routes toward justice?

~Could I lobby for changes to the discovery rule as it applies to torts in Massachusetts and statutes of limitations in order to protect future individuals who find themselves in similar situations such as mine? This would be hard to say the least and does not present high hopes for success either.

~Could I stage a “sit-in” to bring light to the truth of my story? I can sit very well.

Keep telling myself that I will know what to do when the time comes to do something. Right now I am realizing I have no idea where this journey is taking me. My body is broken, that is a fact, but what my brain is capable of in order to solve the justice puzzle, is the variable of focus at this point.

With a Little Help from My Friends

2012-01-24T07:22:00.000-08:00

When you are broken and down-and-out pushing through can be very difficult due to a variety of reasons. All aspects of ourselves become involved, our bodies, minds and spirit, unfortunately, when one suffers they all suffer.

If there were ever someone prepared for dealing with issues related to mental illness, it would have been me. I started my career in serving the mentally ill back in 1995 at Bridgewater State Hospital, BSH, when I was twenty-three. For those of you who do not know, BSH is a maximum-security prison surrounded by razor wire fencing and a tower with a sharpshooter, designed for housing the criminally insane. The facility holds both those under observation (to determine if they are insane, which is a legal term not a psychological term) and those who have been deemed appropriate for BSH rather than typical correctional facilities. As a mental health worker I was direct line staff and had responsibilities to interact with the patients in groups and individually. This required developing a thick skin and the ability to show no fear. After pretending for quite awhile I did eventually develop these skills. This is when I learned that no matter how exhausted I was, I had to dig deep and push forward and never let my guard down. Ironically, BSH was the safest place I ever worked, surrounded by Correction Officers, and a full two weeks of intensive training. During the training process they told us they do not negotiate in hostage situations, comforting. However, they did teach you several ways to save your life and take down even the largest of men. It was something like self-defense on crack.

From there I went to working in the community, I had made the decision that my place in the system was trying to prevent the mentally ill from ending up in places like BSH, as in most cases at BSH their crimes could have been prevented through proper treatment, including antipsychotic medications. In the community the atmosphere was completely different. The overall goal of community-based mental health services is to guide an individual to their maximum functioning level possible. For some this is simply not being in a locked facility but still requiring twenty-four hour care, where as with others it may be checking in with them once a month because they have achieved the level of functioning in their own apartment. Working in the community I held several positions and continued my education. I started as direct care staff, held a variety of supervisory positions and ended developing trainings and teaching community staff about a variety of mental health topics. Ironically one of the last trainings I wrote and presented was on grief and loss, the five stages include denial, anger, bargaining, depression and then acceptance (the Kübler-Ross model). In my training I explained that this process does not occur exclusively when there is a death. I used the example of an individual who suddenly requires a wheelchair and that this individual will need to go through the process of grief and loss. The conclusion of the training offered suggestions for resources and suggestion for working with individuals going through the process.

Needless to say, it is very hard to be objective when you are the subject. Therefore, it is essential to avoid seclusion and avoidance of others. I was continuously aware of this behavior with particular clients over the years. This was a sign that their symptoms were increasing and become difficult to tolerate. Luckily for me, a few friends had their radar up watching for this behavior in me, as I go through the grief/loss process. For those of you who have never experienced depression, the last thing you want to do is get out of bed and be social. Therefore, my friends have been using a technique I often used with others, the surprise visit with coffee in hand. The coffee gets you in the door and the rest comes naturally.

It is very strange being on this side of the situation and I recognize techniques people use, not even realizing they are clinically tested and recommended; it just comes naturally to them. This support from friends is far more essential than I realized when adding this to a client’s treatment plan. Being the client, I better understand why our techniques work in the community, but only through hindsight. Prior to that my friends come to the rescue and guide me through until I make it through my funk, as I call them. These are the people who keep me grounded and able to get through the day. It doesn’t hurt that my husband works in the field and has a great technique for keeping me off the “pity-pot” which includes the use of words like “you’re a Mom”, “your kids need you” and “get over it!” He has the ability to say the tough stuff; the stuff people don’t want to hear but it needs to be said for progress to be made. My Girls just seem to know what I need and when I need it, they make the bad days tolerable and the good days are simply better when I am with them.

Take away reminders:

ü When feeling depressed do not isolate yourself from others.

ü Your friends have the ability to be essential and critical aspects of your recovery.

ü You cannot run away from the grief/loss process you have to go through it to get to the other side of it all.

ü When your husband is offensive and disagreeable, it is not always a bad thing.

Resource:

http://grief.com/the-five-stages-of-grief/

Picking out my new chair.

2012-01-17T22:10:00.000-08:00

Meeting with the technician to pick out and design my new wheelchair was very exciting; I could not wait for the day to come. Like a little kid on Christmas I checked out the sample he brought, I test drove it and was like the Cadillac of wheelchairs.

First, you really need to get an image of the chair I currently use. Picture a scary movie set in an old and long closed mental asylum, and the camera pans down the hallway and this decrepit old wheelchair slowly starts to move on its own; that is my chair. The wheels have spokes, it squeaks as I roll and the breaks are iffy.

Sitting in the sample chair I looked up and the tech was scribbling on his tablet like crazy, taking measurements, asking me all types of questions and then he passed me the card. The card was like a menu of sorts; I could choose my own color and design. I was tempted by the American flag design, but decided that should be reserved for vets. I deliberated as my eyes danced around the card, leopard print was not an option and therefore I chose Candy Apple Red.

It will take a couple of months for me to actually get the chair, but certain I will not be disappointed.

Turning Forty: A Summary of a Week of Daily Journaling

2012-01-11T22:35:00.000-08:00

Turning Forty: A Summary of a Week of Daily Journaling

This picture seemed appropriate as I go into my forties with mixed emotion. Time flies and half my life is now behind me, yet the next half does look somewhat promising. As I reflect back on the days of my boys being little babies, a tear comes to my eye. It seems like just yesterday that I held them in my arms keeping them safe from harm. Now despite my resistance, they are growing up and becoming wonderful young men. This is a bittersweet emotion. I miss being able to keep them close, however, I could not be more proud of who they are as individuals.

Well the clock hit midnight and I am forty. Nothing. I looked up and to my left was a friend of more than thirty-five years and to my right, my adoring husband. It was peaceful and a moment I will remember with an association of love and admiration.

What is the fear of forty? One day your not the next you are, where is the danger, fear and loss. After careful introspection and reflection I solved the mystery. When we are teens we are free to be narcissistic, when we are in our twenties we are free to explore, when we are in our thirties we are solidifying and surviving the present, once we hit forty we must commit to thinking about preparing for our future. This future includes our children growing up and leaving to start their own lives, a budget that is tighter than it is now, and days on end of work with little room to grow because we have already climbed the ladder.
The solution to the equation:
1. GRANDCHILDREN.
2. Sell the house and get a cheap condo in Florida.
3. Look down the ladder and be proud of how far we have climbed.

Now that I have solved the mystery, how will that translate into my planning for the future? I must say there are dark moments as I consider what my future holds. However, the looming fear of one day needing a wheelchair is a depressing heaviness I will no longer have to carry. This anxiety is now a chapter I can close; Sentenced to the Chair is officially closed.
There is a freedom that comes with closing a chapter in our lives, a freedom that only comes from facing our fears and coming out alive, still standing and exhausted at the other end. Now as I close this chapter and move on to the next I must carefully consider what do I want to come next?

I feel I have a little more control over how the next chapters of my life will be written; I have learned I can influence how my story unfolds. That being said, I had to really think about how to operate my newfound power (empowerment) and how to soak it for all it was worth.
I have no control over my condition, nor did I have control over the circumstances that brought me to this physically disabled state, but I do have the freedom to determine that I still have a life worth living! The freedom to decide if I was going to hit this head-on and fight, to fight for the best life possible for my family and myself.

My Nana was famous for her enormous heart, her gift of touching the lives of everyone she met, her great sense of humor and her words of wisdom. She had such a love for life. She had endured the hardest of times, born in 1903; she faced several barriers and suffered more than her fair share of tragedies. Yet, in spite of life’s challenges, which included cancer, she had the ability to experience true joy. She is the standard to which I judge my actions each. I wish I could say that I meet the benchmark often, but truth is I am definitely still a work-in-progress.

The Nanaisms in the forefront of my mind are:

• “You have to work hard for anything worth getting.”
• “Your as strong as you think you are.”
• “You are only as old as you feel.”
• “You can do anything you set your mind to.”
• “Quit talking, start doing.”
• “You can make it work.”

Nevertheless I believe her “advice” to me rings the loudest. As mentioned she is my measure in life, therefore I had to ask myself the question what would Nana tell me?
The following came to mind, and in this order:
“Make sure them Deery boys make that doohickey to get you over to the beach. Get that hot tub thingy over here, and enjoy the HECK out of it! Don’t let anyone stand in your way, and if they do roll ‘em over!”

~Look out here I come!

Showering Gone Wrong... :)

2012-01-05T10:58:00.000-08:00

I can recall back at the start of the summer when my friends decided my hair was dreadful and I was frumpy! Sadly it was true. Since I was no longer working my wardrobe consisted of sweats, T-shirts, leggings, my husband’s socks and sneakers. Essentially, I was wearing my pajamas around town… had I heard of pajama jeans maybe I could have pulled off a more classy look J

But it was my hair that really drove one friend crazy, she does hair on Newbury Street in Boston! So basically I looked like Pocahontas, but without the shine or clean part, and in its place split-ends and lack of any style at all.

After “my intervention” I let the girls have at me… J

What freedom! I was in and out of the shower in record time when I didn’t have all that hair to deal with…but that was then.

Now, although still grateful for the time saved on my hair, it takes me FOREVER to get through the shower. Those of you who have, or have ever experienced, having to take a shower when your body is broken know it is a challenge. Today, was too comical not to share…

So my bathroom is all tricked out for the disabled, safety bars, shower seat, showerhead with a hose, and baskets in the shower at seated level. Well some days even with all these treasures it can be bedlam.

So my wheelchair doesn’t fit through the doorway into the bathroom, but I have a huge vanity that runs the length of the bath over to the toilet. So I get out of the chair at the door and using the vanity for stability I get to the shower, pivoting to grab the other wall. I then sit on the edge of the tub and adjust the temp, etc. Then I reach out and grab the vanity again stand up and pivot to the toilet. There I disrobe, move my towels from the vanity to on top of the hamper. I move the hamper over closer to the tub, pivot using the vanity back over to the edge of the tub. I check the temp and grabbing the bar in the shower I pull up and slap my butt onto the wet plastic seat- sounds something like a whale using his blowhole J

I have a swivel seat, however, I also have a very narrow tub so in order to “swivel” I have to grab the safety bar, raise my legs up into the air and spin my ass around. Lets just say it is NOT pretty! We “resolved” that problem by moving the supply baskets to the opposite wall so everything is within my reach.

Well today it wasn’t until after I was in my seat and just looking forward to a long hot shower because PT really kicked my ass this week, that I discover someone left the shampoo on the inside edge of the tub BEHIND me! “Shit!”

Okay, so I have 3 choices. The first being “the pole dance”…”just can’t do it.”

Second, I could just not wash my hair…”not an option, 2 appointments today.”

OR, I could try to think of something new… “I could try grabbing the bar with my left hand, doing a backbend sort of move and grabbing the shampoo with my right hand…”

You are ABSOLUTELY right…Not a good idea. But I did it anyway.

So I think it through a few times, try leaning back without going too far to see if I can hold my weight with one hand, I take a deep breath and go for it.

Well, remember that slap down on the seat…yup I was stuck to the seat, no give what so ever! The front leg starts to raise, “Oh shit I’m going down!” My worst fear…being found “fallen and I can’t get up” NAKED!!

I quick do a full raise sit-up and level off…first thought, “Damn girl you got abs!”

Second thought, “You friggin’ idiot!” And finally, “the world will just have to deal with my dirty hair… at least it is a cute cut” J