Tuesday, December 31, 2013

Life with Disability: My parents the superhumans

"One day you'll turn to me and say: 'Dad, why didn't you push me even harder or whip me to force me to exercise more"- said my dad to me some twenty seven years ago. As if there was a simple correlation between doing my routines every day and jumping out of my chair that I would have regrets about as I got older. Through most of my writings I avoided criticizing them directly. It's not that I  agreed with everything they have done, but I didn't want the little issues to overshadow all the things they have done a sacrificed for me. Their health, their strength and their patience. To me they always will be the champions on the front of the war on Cerebral Palsy. I didn't want to seem ungrateful for all that they given to me and how they thought for me, sometimes by fighting me in a collaborate effort to get me where I am today. My parents were never perfect and didn't pretend that they were, but every time I mentioned something my parents did that I still don't understand or don't agree I felt I was giving a skewed account of my childhood. Because the good parts and the bad parts don't compare- and by dedicating much thought to where my parents may have been wrong I felt I was blowing it out of proportion and doing them a great disservice. But then I got to talk to a lot of parents in America. Mothers and fathers of kids with my disability who hope to give as much to their offspring as my family did. And pray that one day they will be as active and accomplished as I turned out to be. The flipside to continuously talking about my parents putting me first and doing everything they could to make me better was their feeling of not quite measuring up. My parents were not perfect, but I never forget that everything I am is because of them. And while there are things I disagree with I look at them with fondness. Because I understand where they were coming from. Fear. Fear for me, fear of what will become of me when they are gone, fear that every second I'm not moving, exercising, getting better is a moment wasted that I can never get back. They felt we have a small window to help me improve. A window that would shrink with every year that passes. That fear had to had been eating away at their core. Making them and our lives intense- trying to do as much as we could so we wouldn't turn around pinpointing to all the things we should have done. For many things, when in comes to my mother and father, I'm in awe. But I don't want to make it seem like I'm impossibly  raising the bar for other parents. Mine were  not superhumans although looking back, they often feel like they were. Parenting is about choices - I never claimed we made all the right ones. 27 years later  I don't wish my dad had whipped me more, but I also don't think of "not walking" as my life's most profound regret. I try not to dwell on what may have been, but yo make the best of what I have. And I think that's their greatest gift. To CP parents who contact me fearing they're already doing something wrong and missing opportunities I say: that is the sign that you're doing something right. Mine were the same way. Use your best judgment and do the best you can. Isn't that all you can do, anyway?

Friday, December 27, 2013


My grandfather had a small white house with a large orchard we would spend summers at when I was a little boy. Back then it was enchanting. As years gone by lack of modern amenities such as indoor plumbing, color TV and electricity without frequent outages kind of lost its charm so we eventually stopped going. One of the most magical places on his property was the shed full of things he never allowed to throw out. You may call it junk, I called it his treasures. Furs, furniture, machines of yesteryear, everything had some value to him, I actually he believed some of those things have value or may be useful in the future. Either way  it felt like he never parted with anything and it was just added to the pile. There was no order or logic to this collection- it was just a lot of stuff. My dad is similar in the sense. In our three bedroom apartment most if not all of the cabinet space was taken over by his nick nacks, parts and tools. To his credit, he did use some of it though as he was single handily responsible for all the remodeling and home improvement. Also, back in the day in Communist times everything was really hard to get, so I understand the hesitation of letting things go. But the problem was with all the things useful and not piled together, you couldn't really find anything and quickly you'd run out of space.  When no one was looking, my mother- the practical, level headed cleaner of the house would raid some of those places and indiscriminately throw most of it out. For years we had a large pile of newspapers in the living room. What for? Who knows. In that sense I take after my dad. I have the" I may need it at some point" or "It's going to be useful at some point" instinct.  Having a pile of junk is one thing, but keeping it organized is another. If my mom saw a mess in my room when I lived with my parents she'd clean it and dispose large quantities of it. I now think, quite frankly that I'll need it at some point in the future (and never "now") is a code word for never. Yes, I tend to be a hoarder myself. It's not even that I think I'll use most of it for anything, it's just that I don't have time or the energy and I just really, really don't want to go through the junk mail that comes in every week or the law magazines I just put on the top of my bookshelves always thinking: One day. But I really don't have the space in my one bedroom apartment to store any of that stuff. A very attractive offer from National Geographic came in the mail- an annual subscription for next to nothing, but all I could think of was another pile people will be tripping over a year from now. I guess I have a bit of my mother in me as well. Once in a while I take one of those lawn and leaves plastic bags and take on an "everything must go" attitude. I did that just before Christmas. Programs from the theatre, catalogs, mail, cards, I don't have room to be that sentimental. Some of the things from my old apartments- will I ever use it? Loading things in those bags and setting them in front of my door for pick up actually made me feel good. I was freer and lighter and I was letting things go. My mom uses cleaning as a way to process through some things and channel her stress into something productive. I did it to distract me from the work I should have been doing and yet it made me feel good. I was thinking of my dad and my grandpa  and how much better I feel not being tied down to a lot of things I don't need anymore anyway. It's a New Year, isn't it? So out with the old...    

Monday, December 23, 2013

Disability front and center

The only times that my disability became a conversation point when I was growing up was when a little child would turn to their parent  and ask: "Why is he in a wheelchair/stroller?" And then after the guardian got uncomfortable for a second, it was perfectly satisfied with the answer: "Because he can't walk". I don't remember ever explaining what my condition was and what it meant to anyone in elementary school. I can't be sure if any of the teachers didn't take upon themselves to have a special conversation with the class, but I never had to answer any uncomfortable questions or deal with anyone staring at me. To that extent nobody had any problems with the way I was. I had limited mobility, I crawled or leaned on furniture to move around, I needed support under my arm to lift my self into a desk chair. I guess you could say it's because I've spent eight years with those kids- a normal length of Polish elementary school at the time- so they got used to it. But the it seemed to make no difference to any of the transfer students I befriended as well. I guess to all of us it was who I  am, my natural state, why would anyone had issues with it. Kids knew that I had limited mobility and knew I did things differently, but seemed to get used to it very quickly. As for me I've had nightmares about ending up in a wheelchair or ending up in a care facility from a very early age, but that was a fear of the future, of what will become of me and how will I manage if my parents are not there. But I  never had to worry about how people see me, what they think when they meet me, do they pity me or my mother. As much as I preferred not to have Cerebral Palsy I got used to it as did everyone around me. I can think of very few occasions when my disability became front and center. Once, I must have been about 11 when an older lady I've never met stopped me and mom. "I feel so bad for you"- she said. I guess my mother wanted to make sure I process the experience in the right way because I remember we had a conversation about it. "Why would she pity me? I feel sorry for her"- I said-" She's very old, doesn't have much time left and can barely move". My mother loved my response and it became one of the family stories we shared over a meal. But I guess at that point I also understood how people project - they make a bigger deal out of something they think they'd miss- like running, dancing, skiing- and they feel I should miss it too, when in reality some of those things I don't even like watching others do- and had no desire to do it myself. And for some reason - like that lady in our lobby- some think that their life is better than mine.

The schedule for my class was  primarily designed so we wouldn't have to switch rooms often. Teachers came to us and we'd mostly be in one place. Back then I insisted on sitting in a school desk chair like any other kid. If I needed to switch rooms my parents came after class as they had my schedule hanging in our living room. They'd just grab me under my arms and walk with me to the next location. But sometimes they were late. There was a boy, a year, maybe two older who was about to have a class in the  room mine just ended. We still had a few minutes and I was waiting for my parents to come and get me. The kid thought I was just trying his patience as I was still sitting in his spot. Not knowing I couldn't walk he came from behind and pulled the chair from under me as I fell to the ground. Friends who waited with me did nothing to explain, just said "Leave him alone". The boy panicked while I was fine and got back up on that chair. I guess he was profoundly affected by it because somehow he looked up our address and showed up at our door. He felt he needed to apologize, I suspect  he had a conversation with his parents and he felt bad. Awkward situation for both of us, I never had a boy bring me flowers before.

Tuesday, December 17, 2013

My Brother, the parent

When I was ten years old, my mother flew to Budapest for the weekend to take care of some business leaving my brother in charge. We spent most of the day playing games on his computer that we hooked up to the living room TV, something we only got to do when our parents were not home, but when it was time for me to go to my room and do homework I wasn't feeling so well. I was coming down with a fever that night, a prelude to a few days later turned out to be severe case of tonsillitis. Yet my brother thought I was faking it or just didn't feel he could let me not do my school work and he famously made me sit at desk for a few hours anyway. That story became quite famous in our family. My brother jokes that the way mom tells it, with him sitting me " right under the desk lamp's hot light bulb"  it sounds as if the lamp, the desk and the homework were the things that actually made me sick. It was also her way to illustrate how all hell's breaking loose as soon as she leaves us together. Truth of the matter is, he was never the type to enjoy taking care of other people. When my parents ordered him to take me out on my bicycle he told me to do laps around the courtyard while he was plying ball with his friend. I managed to flip to the side and cut my arm right under his watch, not an easy thing to do with a three regular sized-wheel bike. Over the last few years I wrote quite extensively about parenthood. How it's something that most people succeed in instinctively and when the time comes they rise to the occasion.   With that said I really wanted to recognize my brother for the amazing parent he became. When I first heard he was becoming a father I thought to myself "I never even knew he liked children around". And I wasn't there when he was transforming- first with his son, then with his daughter that came soon after. It's not the person that recognize from my childhood. Loving and dedicated, just can't wait to rush home and spend time with his kids. Savoring every moment.  Perhaps it's because how young my niece and nephew are and there will come a time when saying those things becomes embarrassing, but he makes sure he tells them he loves them and that they say it back. When we were little although we always knew our parents loved us I don't really remember verbalizing it. I don't think we ever spoke about our emotions much at all. Thankfully he doesn't have to deal with a disability in the family, but I have no doubt he'd not only grab that challenge by the horns, but be on the forefront of every innovation, method and the latest research. I guess parenting changes people and gives them strength to face whatever   comes. And in that way, whenever I hear from parents of kids Cerebral Palsy who have doubts of what to do and how to do it, I think that although I have no idea of what it's like to be a parent I look to my brother for inspiration. You'll know what to do when the time comes.

Sunday, December 15, 2013

Let's work together

The Munich Conductive Education World Congress re-energized me in some ways, while clipping my wings and crushing my dreams in others. Many people got to see me speak. A few reached out to me right after to say how impressed and inspired they were to hear my life story and things I accomplished. It's obviously flattering when someone has nice things to say, but I'm not here to be admired. But if I can, I'd like to put it to good use and make a difference. I would like nothing more than to be involved with disability organizations, Cerebral Palsy causes and Conductive Education schools. Wouldn't it be amazing to have a career in  something you're passionate about, something you can stand behind and support, helping people just like you?  At the beginning of the year I started a nonprofit to deal with issues other people were overlooking and I have not been very successful attracting other people to it. At moments like these a thought pops to my head- maybe I should be doing something else, somewhere else, maybe there's a better way to tap into my life experiences and skills. I said it once and I'll say it again- I'm willing to discuss any new opportunity that opens up. My biggest regret after my Munich speech would be, if nothing comes out of it. If all that happened was that I went, spoke, people got to hear me and perhaps got interested for five minutes and then it ended as soon as I went off. Just one, insignificant moment in time. Yes, I got a few emails after I got home. Emails that perhaps I got too excited about, a mistake I always make. I should really curb my enthusiasm a bit more. So many other times someone gets in touch with me, we start talking, I get my hopes up and nothing ever happens. This time a few Conductive Education centers reached out saying, we were blown away, is there a way we can work together? Could you perhaps come and do some presentations, like the one in Munich? And I always say: Great, what did you have in mind? And this is usually how the communication ends. Because a lot of time they really have no idea how and what for they would use me. A lot of times I feel like they expect me to come up with ways I can get involved. I'm interesting to have around. Like an alien-life form, a missing link or a unicorn, but I can't think of any practical ways a lot of these places would have me on-board. I would match rather do something like this than trying to grab any random client I can get. Trying to practice law often test my patience, I often deal with people who have no respect for me, my energy and my time. It's a stressful line of work that leaves me depleted and second guessing my life choices. I wouldn't mind trying something else.  And while making big money and having a lot of possessions never made it on my to-do list, I do have rent to pay. I can't afford to volunteer much more time, no matter how close to my heart the cause may be. I tried it before, led me nowhere, other than making me one year older. I'm also not a parent of a child with Cerebral Palsy who has the mobility, the time, the energy to have a full time job and then run a CE school on the weekends. I do need to look out for my own future and stability.  I've also heard from the North American CE Association. I think they are amazing people and I admire everyone who tries to make a difference. A few weeks ago we've had a very nice conversation, we've exchanged pleasantries. But I don't think anything will come out of it. Perhaps I'll pay the membership fee and join like they offered, but a problem is: we can talk, you can ask me questions, you can even touch me and aside from a few compliments nothing ever happens.  But this made me think. If where I am is really as "amazing" as they try to see it as perhaps I should be more proactive. I've decided to reach out to disability nonprofits across Florida and CE centers from around America. I have all those LinkedIn credits and it's time to start spending them. And this time, it's me asking:" Have you heard about me? Maybe there's a way we can work together?"

Tuesday, December 10, 2013

Don't watch me

I can't quite explain it. When somebody's waiting for me at the door everything just takes so much longer. It feels like when I'm fighting against the clock my body becomes more tense, stiff and then just doesn't cooperate with me easily until I'm able to relax. I guess it's the idea that I'm making them wait or that I'm running late that makes me just so much much more nervous. Getting dressed, moving to the door or putting on my shoes goes so much faster when I have a few extra minutes to spare. I've been doing it long enough to know that certain things I need to do much more in advance to avoid surprises. Things like buttoning up a dress shirt. It's tricky enough if like me you try to do it with your one good hand, but when I know I need to be out the door in five minutes I work myself up into a state of panic. All of the sudden my hand doesn't want to fit into the glove and I struggle to put it on. Time is ticking away. Oops I dropped my keys again. I try to get myself plenty of time to get ready not because I actually need it "to get ready" but to give myself the comfort of being able to do it faster. For most people, adrenaline rush is what makes them run that extra mile, lift that heavy weight or run after that bus that is about leave the stop. With me, it's different. When I see a bus that I simply need to catch and need to get there quickly, my muscles tense up, my body turns heavy and every move I make feels like I'm fighting against it. I hate when somebody watches me getting into my chair or just finishing getting ready, like for example putting on my shoes or jacket. It makes me very self conscious as I know somebody is watching, waiting, rushing. Stress can come over in professional situations too- when I'm fighting the courtroom carpet to roll up to the witness stand. In law school we figured out a way to not have me moving around during trial practice class taking to much time. My partner would just assist me joggling the props and exhibits. When there's a problem, there's also a solution. My dad would often stand silently in the back as I was getting into my chair for example and then voice his opinion. And that type of feedback only made me feel uncomfortable. Nobody likes to be criticized especially when they struggle. Truth be told, my dad would do it with any miscalculated move I made. Watching and criticizing. I think he thought he was helping me. As if this third person analysis was something I could use to avoid it in the future or a thing I was not well aware of.  Yes, I know I made a mistake. I'm the one who slipped and ended up on the floor. Yes, I slipped. I lost the grip. I lost my balance. It happens. It happens till this day from time to time. Comments from the peanut gallery are really not welcome as I struggle to regain my composure. I don't want an instant replay. Me and my body are quite a team. And most of the time I get it to do what I want. But this requires me figuring out how. Without external pressure.

Monday, December 9, 2013

Advice for parents: What to do about your Cerebral Palsy child

A while ago I reached out to a parent of a child with my type of Cerebral Palsy. They were very excited to hear from me as someone who has been through all of this and -not without dedication and sacrifice from many people in his life managed to get education and a career. Their child was too young to communicate on their own and talking to me may have felt in a way as a reassuring glimpse into the future. I in turn saw a familiar blend of eagerness to get started, hope- that with plenty of rehabilitation they get beat this, fear- that every moment is precious and many were already lost. But most of all- that caring for a special needs child is a gargantuan task and  they could not shake the feeling that with every turn they could be making a mistake. "You'll make plenty of mistakes"- I said- "But you'll get most things right". And I think that's a true statement. Raising children is difficult on its own, a child with a disability is an extra level of complexity. Kids don't come with instructions and what may work with one, won't necessarily work with another. Think of me and my brother for an example. He was a little rascal growing up that would get in trouble. I wasn't- not only because I couldn't physically move as much but I was the sensitive one with big imagination, constantly afraid of everything. Our mother tried to treat us equally and had a pretty tight grip on us both. My brother perhaps needed it, as despite his good grades he was a prankster. I ended being stressed about  everything and till this day quite jumpy- and I didn't feel like my mother's hands on attitude really helped me get out my own head. As a child I may have been talkative, but in many ways introverted.

1. Breathe.
I really believe that kids are not made out of China. Yes, as a parent sometimes you will make a mistake. You know how your parents always said, you'll understand when you're an adult? Well, there are things mine did that I don't understand till this day and others I openly disagree with.  Did any of it ruin my life or scarred me for the rest of my days? Not that I can think of. If we were really as delicate as psychology tends to suggest and we were to believe that every decision and every reaction is a matter of life and death with countless implications that cannot be reverted - how would we ever survive evolution as species. Breathe, do you best, adjust, breathe again. Your child may be tougher than you think. I've written countless texts about all the sacrifices my parents have made for me.  Simply put I wouldn't be were I am if it wasn't for all their gave up for me.I was hesitant and stayed silent  about the mistakes that they have made because I didn't want to shatter the image of them that I created for my readers with minor things that felt petty and insignificant.  And yet everybody has something they can blame their parents for and remember thirty years down the line.

2. Try Anything
I can't tell you what forms of therapy to try. I can't pick a rehabilitation facility for you. If you read my blog you'll know that I happen to be a big proponent of Conductive Education because that's what incidentally worked  for me in combination with other things and I'm more than willing to talk about it. You have to figure out what will work for you and your child. My parents were more than happy to  try out or read on any new approach out there. Many did not work or did not have a lasting effect, but we never stopped searching. And just because Peto was our man thing doesn't mean that my mother didn't insist on a host of other physical activities in between: horses, biking, swimming. You never know where the next big break might come from.

3. Be reasonable.
With that said, remember that there are only 24 hours in a day and there's only so much you can try. As someone who grew up with a very structured, physical activity driven childhood I say push your child towards greatness but don't push it or yourself too hard. I guess we really didn't know what to expect and did not temper our expectations accordingly, but I did grow up feeling a certain degree of failure, because despite our best tries I never ended up walking and to me it seemed like I disappointed my parent. Be smart navigating times and schedules. A child needs to be challenged physically and intellectually, excel academically and develop social skills. It's often tempting to focus on that one thing, that new method neglecting everything else, but not worth it.

4. Give space.
As someone who grew up being carried or wheeled everywhere by his parents I wanted to caution you about how difficult it is to develop your own identity, your own space and secrets if there constantly is  someone virtually attached to you. My mother would point out that when I was very little I could have not been left alone and cried for companionship and she'd be right. I just don't know which was the cause and which the effect. We all have a need for physical boundaries and physical space. Note how we are forced to give some of it up when we can't move on our own.

5. Give support and push harder.
Giving space doesn't mean that anyone should be just left alone. Throughout the years of rehabilitation, for many hours in the days my parents pushed me  to try harder, make one extra step and didn't seem satisfied unless I was exhausted and sweaty.

6. Remember: All kids are different.
My brother and I had different emotional needs. Not so much because of my disability but because we were different people. We reacted to the same things in different ways. We were not similar at all growing up when it came to hobbies, academic interests, the like or-in my case- dislikes of all things sports related or our choice of literature. We differ greatly in temperament and how we relate to the world. What worked on him growing up may have not worked on me.There's no one size fits all solution to parenthood

7. Give yourself.
Go ahead, browse through my blog. I have written repeatedly how much my parents have given up for me carrying me to school every day. I'm a "success story" if you will only because the one thing they have never given up on was me. While other parents around us did, we kept going strong- at the price of my mom and dad developing severe back problems.

8. Have hope and be happy.
What my parents sacrificed gave me in turn this great sense of guilt and uncertainty, fear for the future if you will. Push your kids harder, inspire them to walk, but never stop reassuring them that if it doesn't work, it's not their fault. That life goes on, and  wheelchair is not the end of the world. That whatever they end up to be, they will always be enough. And they should never stop dreaming and aiming high. I can tell you, that when I was growing up we felt like the most average family. We just did certain things differently. The special needs issue doesn't come out front and center every day. Most times, it's not even a factor. But I wish I had more of a sense of what my future was going to be like. Perhaps perhaps I would be so scared all the time.

Friday, December 6, 2013

How it all started

I don't quite remember what came first: When I was in my very early teens my brother announced he was going to Paris with his girlfriend for a few weeks  A cross-Europe roadtrip of a lifetime with a planned visit at Euro Disney. My parents decided to pay for the drive and stay as a gift- as we he was about to start university later in the fall.  As a child I was huge Disney fan and I it was my dream to visit a theme park like that. But he was about to experience it. At at that moment I started to feel trapped. I had nothing to look forward to, life was going to pass me by. There would be more and more things I would be excluded from and I was stuck at the apartment with my parents as my brother got to live his life. It would only get worse as I got older and heavier. A pretty gloomy vision for an 11-year old.  I remember having a very emotional reaction that day and my parents thinking I was acting out as a spoiled brat sent me to my room where I was crying in the dark. It was one of the moments when I told myself that something needed to change. That I had to find some way, some places to have a life that didn't feel like an attachment to my parents. It had less to do with my brother getting to have the time of his life in France and more with my realization and the extreme feeling of hopelessness that came over me. I also remember one New Year's Eve weekend in the early 90's. My brother and his girlfriend were house sitting for a friend. Quite a comfortable villa, with minimal glass furniture, white walls  and lots of light. It was the first time that I got to stay somewhere new without my parents present. And in a way I felt liberated. I didn't get to get out of the house at that age much. Rarely would I go somewhere that wasn't my aunt's, uncle's or grandmother's place. Even on extended school trips my dad would not only always be there, but most likely in the room right there with me, separate from the other kids. Here was I with  no one to watch me but my 19- year old perhaps, brother. And it made me feel like we were equals of sorts and I felt like a grown up. A partner. Like I was experiencing something new. My brother made sure I'd make my own toast and wash the plate after I was done. And I thought lik a life without a parent around was not an impossibility at all. In this new setting I was not only able to do things for myself but I liked it! Who knew. Nobody forced me to do it. It's new circumstance that made me branch out and try new things. When I went back home two days later I felt depressed in a way. I was stepping back into that old life when I knew there was another way to live. The apartment we lived in since I was born felt small and stuffy all of the sudden. The memory of that weekend, the image of that house was what drove me to independence today. The thought that I got a lick of doing things for myself and I wanted more. Because I liked how it felt and how I saw myself. As somebody who's able to do things. Don't you know how amazing it is?

Wednesday, December 4, 2013

Push me harder

When I was a in my early teens, my parents tried a number of physical activities to integrate into my schedule. Twice a week I would go to the swimming pool in the area, every Monday I'd ride horses and every day after school I was biking. It seemed however that both of them had a different idea behind making me do all those things. My mom wanted me to primarily get the exercise. The movement, the accelerated heart rate, the routine. My dad was pushing me to do it as an activity I could be good at. Not so much for the health benefits, but beyond- because that's what other boys did. For months for example,  for months he tried to teach me to swim- and really pushed me hard. While my mom didn't really care if I only splashed around in the pool with my floaters on, my dad had the whole hour planned out for me with laps in different styles. He's the reason I fear water today. What can be a very pleasant experience for a child with Cerebral Palsy, because you feel much lighter and can walk in the water without your body weight and spasicity dragging you down for me was a nightmare. Every time it was time for me to go to the pool with me I watched the clock hoping he'd be late. It didn't need to turn into such traumatic experience, but it did and I loathed it and I feared it all week long. He'd drag me out out to the deep water and make swim towards the shallow end. As he was walking away from me knowing I can't reach the bottom with my feet would often cause me to panic. I was never able to simply relax and have the training take over. That state of fear made me do a lot of exhausting tense, rapid moves until I was in the safer area. Being in the deep end felt like my body was frozen with terror. I guess it all started when my dad tried to teach me to swim on my back a long time before. I think I didn't let the water carry me by assuming a flat and straight position and for a few seconds I went under. My father decided nothing bad was happening and I had to figure it out on my own so he did nothing. I still know the technique for some of the styles, but every time I'm in a pool I'm afraid I'll drawn. I guess some experiences you don't easily get over. Was it as necessary to push me as hard as he did? Probably not. But my father taught every other kid in my family how to swim and I guess it was hard for him to accept that I was different. All my classmates were swimming- I guess for him it was natural to teach me something "all the boys my age" did. Just like when he tried to get me to learn to play poker. Another activity I don't care for. Or when we sat down a few times to have me figure out chess moves when I was eight.

When I was twelve, I started hippotherapy. My instructors quickly figured out that I'm a natural with horses and I could be doing so much more than just exercises. So, our weekly trips to the forest begun, and then they wanted me to guide the horse on my own. That part was fun, but I never enjoyed galloping- there was something about the animal having all four legs in the air at once that made me feel like I was falling down. I'm not quite sure how that experience ended, but I miss horseback riding. Not because I dreamt of being a great rider, but I enjoyed the rhythmic  moves and the warmth of the horse against the cool breeze of the woods in Autumn. I've had a bicycle with  two  big wheels in the back instead of one for balance and straps to tie my feet to pedals. Mostly it set in one place with the wheels lifted so I can bike in the living room for exercise. My dad liked to take me outside on it to trek around the neighborhood. I can't say if I liked it exactly. I still say a bike sit is designed by a sadist and not with males in mind. But I liked biking around with my classmates who we'd call up to join us. With teasing and laughs the goal was to get some bubble gum from my aunt's convenience  store. As Andrew Sutton made me think about what the "normal" is with regard to disability,and how others now look at their experiences in Europe and say that growing up they were made feel like their condition was a problem needed fixing, I can't stop thinking about my parents motivations for pushing me hard as well. To do things that "other kids do". Isn't that another way of saying that they wanted to make me "normal" whatever "normal" is?

Sunday, December 1, 2013

Disability and strict parenting.

I had a strict bedtime until I was fifteen. Lights out by 9 pm. It didn't matter if it was a school night or a weekend, if there was a movie that everyone at school was watching or if it was ending in 15 minutes. It simply wasn't a discussion you'd have with my mother. Often it was as simple as a look or a gesture and you knew that you were done for the night. There was no reasoning, no burgeoning with my mother, you could pout until you were blue in the face, proclaim how "unfair" your life was all you wanted, still wouldn't change anything. There was only one way of doing things in our household and it was my mother's. Have you ever seen those movie shows were kids and parents have weekly meetings and debate things? Well, we were not like the Cosbys. Back then I didn't know why she felt to have such strict, "rules are rules" approach to everything. And I still don't get it today. Part of the reason I loved staying with my aunts that much (and you can pick any aunt from either side of the family) was that on the weekends me and my cousins were allowed to fall asleep in front of a TV watching some obscure horror movie on a pull out couch. At the same time my mother felt like a psychic in many ways. Whatever it was she'd always get it out of me just by looking at my face. I simply couldn't lie to her about anything. That was the weirdest thing. I was for the most part, a very good kid. Both of us were, bringing the good grades and honor diplomas. But my brother from time to time would get in trouble when hanging with his friends- boys being boys - playing about in the area. I guess that was the thing. My brother always had other avenues, other places to go all the time. If it so happened that he and my parents had an argument, he'd storm off somewhere. Outside of school, I was always at home.For the large part of my childhood I felt that there was nowhere I could hide from my mother. I was always there, at her mercy, with her ever seeing eye. And as a stay at home mother she was always there as well. My disability only made it more severe as I simply couldn't physically go anywhere without my parents. How can I show my independence, how can I be mad at you if you're always there, I rely on you for everything and you rarely listen. It really was getting me more and more frustrated, especially when I was a teen. I was getting older and nobody seemed to notice. Nobody cared that I was aging and changing, that I had points and ideas and feelings that were valid. Like I was trapped in a cage of my emotions, my body and this apartment and there was no way out.  From time to time I'd throw a tantrum. Not often, and they may have felt like it was coming out of nowhere, but to me it was a final straw. To my parents it looked like hysteria. When I was fifteen my mom went to Germany for three months and I just started new school. My dad had a more relaxed stance on parenting. He also worked nights twice a week, so he had to trust me that I would act in my best interest and know how to get up for school the next morning. For a while I felt like I was one of those teenagers on TV and my new life was just beginning. My new bedtime was sometime around eleven but if my dad saw that I wanted to stay up to watch an award ceremony he was fine with that. When my mother returned that December we went back to a more strictly enforced bedtime, although the bedtime stayed at 11. I think this was one of the points she had to unwillingly cave on. From that point on there were more moments of frustrations, more, "but I'm almost 18" bursts, and more of my mom, as much as we all loved her trying to control all of her dominion. Luckily, as she went to work that year there was less of a need to fish for information of what happened at school and what felt like my inner, deepest most intimate thoughts. For the most time she now wasn't there. And when she was- she was too tired. So the walking in without knocking that try as I may I couldn't educate my parents on even as I was visiting twenty years later- reduced to a more reasonable amount. The going through my things- only happened during cleaning. Did I mention that my parents were always struggling with the word "privacy"? But at least growing up as I look at it now- it was better to deal with "unreasonable" and "nounderstanding" parents then thinking so much about that one thing truly limiting me at the time. My disability

Friday, November 29, 2013

The new Normal

My brother had crooked teeth when he was little. I know that he hated wearing his retainer growing up and that's why some decades later he doesn't exactly have a million dollar smile. My mother wanted to spare me that experience at least -although most of mine grew straight - some still could have benefited from a had to corrective device. But the question she had to ask herself was: is it worth it. The pain, the embarrassment,  the routines, the social stigma. And to what end? What would have been the benefit? Normal teeth, a problem that needed fixing but at what price? Does the goal justify the means and the costs? Is it fair to constantly be seen as a problem in need of addressing and fixing and for what, to be normal? Who says what this "normal" is exactly and why we all need to be "normal" in that one established way.
Andrew Sutton recently asked me to look over some very severely negative opinions  of the Peto Institute in Hungary, the facility I credit for the level of my physical independence and ability that echo that same sentiment- and which in my view are not exactly fair. The authors compare 1980's Budapest to today's New York city and say: they made us feel like we were a problem. An issue that needed correcting. We had be transformed, become normal, and who knows what this normal is anyway, while New York City finds new ways to adapt, include, be accessible for people with special needs. The accusation being that the Hungarian Government told the Peto crew to deal with the disabilities in the country to the best of their abilities. There are few things I find extremely problematic with these statements. First, I find New York City probably the least wheelchair accessible city I have been to in America. It is not a good example of how things have progressed. Much better than Budapest for sure, but if anything it leaves me depressed every time I'm there when I'm faced with all the things that are beyond my reach there and places I can't get into. Yes, I share their sentiments that living behind the Iron curtain had made me feel like I was a problem in need of fixing and every day I worried what would become of me. And I can't really contrast it or compare it with anything, because all I have known as a child in the 1980's was life in Poland and Hungary and they were in that sense alike. And you in a way get used to it.  But it wasn't Peto's fault. If anything it was the only one of the countless rehabilitation facilities I've been to that didn't feel like a holding place, like we were doing something constructive. It was the communist government that kept people with disabilities out of the public view. They didn't fit the description of the happy, care-free, healthy society countries of the Eastern bloc were trying to present. Traditional facilities like mainstream education were beyond our reach for policy reasons. All people like me had to look forward to was special schools and special manual labor work places like gluing dolls and putting pens together. Even if that wasn't the case, there were steps, stairs, everywhere you went. You simply couldn't get around in a wheelchair without some basic ability to walk up, even to get on the bus. And I feel first and foremost this is the basic problem that the Budapest Institute was trying to correct. I grew up with a notion that I will either be "normal" to the fullest extent possible or I'll work ans spend all my life at home when I get to heavy for people to carry me. But this wasn't something the Peto Institute taught me. This was the reality facing me outside of my window. For as long as my parents were around and had the strength to deal with me, yes I could have some form of a life, but what would happen next? Even as trends changed after the fall of communism in 1989, you couldn't rebuild the city over night to fit my needs. And changing people's attitudes takes years if not decades as well. 24 years I feel that Poland still has a very strongly communist like approach to its citizens in wheelchairs as well as citizens in general. Back home, in order to work, to be employed in any capacity you need to be cleared by a  labor medicine doctor and pass regular checkups. If you have a disability there are committees that deliberate, need to see you in person, look over your paperwork and determine your fate. In Warsaw I'm permanently unable to work and they prefer to pay me money to keep me home. In America I'm licensed to practice law in two states.
But before we go on about how inclusive America is and Europe isn't please remember that it isn't exactly fair to compare 1987's Budapest with 2013 New York City. Accessibility is a fairly new trend. Americans with Disabilities Act was passed in 1990. Before that US has as little clue as what to do about people with special needs as the Europeans. So the Hungarians did what they thought was best to help- To give people skills to try to help them exist in a wheelchair unfriendly world. And some of those I use every day, because often I'm in a position when I need to figure out how to get around a problem when a grab bar isn't there. Recently I wrote:
  "Not until I moved to America had I thought that there is another way to approach this. Not have me mold to the world's limitations, but mold the world around me so it can have less limits. In that sense I started to think of Conductive Education as a counter movement to the American accessibility trend. Yes, Peto says to try, to fight, to be the best that you can, but it seems that he's essentially saying change the individual, because the world will not change for him. And in that way, while I gained more ability and just enough to function in America, I do think it conditioned me to accept the world as is and expecting less out of life often feeling inadequate. Americans are getting rid of stairs, putting in lifts.  You can get around more and you get to experience more in life. But they also sit the children in wheelchairs early, don't promote developing the physical abilities, mobility, body awareness to that extent, elements I find useful even as I live in more accessible Florida. In my mind, both need to change, grow and adapt- the children as well as the surroundings they live in."  
Now I think that the proper approach is both and the truth is in the middle. Change what you can, adapt to what you cannot. Being fit and able is still useful in a host of situations and perhaps it's my ability to get things done for myself is what amazes people when they see me living, working, traveling by myself

Sunday, November 24, 2013

A boy and his dog

It's not that we didn't have pets when I was little. My brother apparently sun-dried his crawfish when he left the container on his desk by the window in direct sunlight. I'm not sure if our hamster "escaped" as my mom later claimed, I have as strong suspicion that she met her end inside of vacuum cleaner "The Wonder Years" style or that someone forgot to fed her. We also used to have an aquarium in my brother's room. I'm not quite sure where that went, I only remember how it was gone when my parents remodeled my brothers room. I was young at the time- but I recall that feeding the fish or not feeding them was a big issue in the family and I saw some jumping out of the tank. The hamster on the other hand was some kind of project at my brother's school where he traded a plant for the animal. My cousin Grazyna had a dog all the kids in our family loved. He was pleasant, warm, never bit or barked, social, furry and white. You could not separate him from her and even as my aunt yelled at her he'd jump in barking to protect her. At the time we believed that Endi was a poodle mix, now I think he looked more like an English Sheepdog. It was funny how I scared of most other dogs as they came by but this, this one I loved. I remembered how one evening when visiting my aunt I talked my parents into "borrowing" Endi for the night. He knew us well and he's been to our house. Without my cousin there he got extremely homesick and spent the whole night at the door squeaking and barking and would not come down. That was love. When my cousin got married and pregnant and moved away, she left her dog behind with her parents. When I asked her why   she said she grew out of it and now she needed to focus on her child. My uncle told us years later, that while walking Endi somebody just grabbed him off the street into their car and he was never seen since. I was twelve when I got my very own dog. Well, not really my own, because she seemed to love my brother the most. She was a mutt. Tiny black thing, resembled a dachshund. She loved people. Always running after strangers to lick their shoes. At first she slept in an old cardboard box but grew out of it quickly. If you left her with kids, she'd have the time of her life. She wouldn't eat lunch meat if you just put it in her bowl. Wasn't a fan of sausage either. She didn't trust most things unless it was something she saw you eat it first. But if she heard the tearing of a candy wrapper even from the other room she was right there to hypnotize you with her eyes and get you to give her a bite. That was also when she'd try to perform all of her tricks at one. Giving paw while begging is something to see. You didn't want that paw? She'd give you the other. Or play dead. Every stranger who passed our doorstep was an instant friend and she loved bring the keys to and from the gated door that cut off part of the floor our apartment was on. Through the night she'd visit any bed with a person sleeping in it she could access. My brother and his girlfriend would often take her with them into his room and she loved that as well. You could say she wasn't that attached to us, right? Wrong. When my brother's girlfriend "borrowed" her for the night to keep her company she wouldn't leave the door or keep quiet. The dog demanded to be returned and was returned that night as if it was an emergency. It was odd to see other kids with Cerebral Palsy freezing up in her presence as if I brought a doberman. That's how I used to react and sometimes still do- with other people's dogs. She never had a good sense of smell, but had a good memory. When asked to search for something- and she recognized a few names of items, she mostly remembered to go look were things usually are. She loved water and to bathe. On a few occasions she even attempted to jump into the bathtub with us. She wasn't much of a fighter and mostly feared other dogs. She just had to be included in some of our exercises. When we would throw the ball around to help me develop precission and skills, every now and then you had to throw it to her, into the apartment.  Sawa's health first started to decline when a rottweiler bit her and she ended up getting stitches. She also developed some back problems walking up the stairs and few years before I left she had some internal organ issues and refused to eat for a bit. But then she got better. And then, just like my cousin I guess I moved on with my life. In 2004 I left Poland. My parents didn't want to worry me when her issues and older age really started to get to her. She wouldn't eat, she wouldn't drink, she had a hard time walking. My mom started cooking vegetables for her as if you would for a child. That was the only thing she'd swallow. She developed a system where she'd stock up on home made food for her, days in advance. Some days she seemed to get better. But later she barely moved. She had a hard time keeping her food down and she had to be carried outside. I didn't know what happened until months later. My parents took her to the vet one more time expecting treatment, hoping there was something they could do, but they never came back with a dog. The vet decided the best thing to do is to put her to sleep. My mom  told me the heartbreaking story of how they came back to an empty home with jars of food cooked for Sawa waiting. And they didn't tell me. I guess they didn't want to stress me. Back then I was set to take the Bar exam in New York and I was fighting for my law school admission in Gainesville

Friday, November 22, 2013

Pumpkin season.

I like November in Florida. First batches of eggnog hit the stores, pumpkin spice becomes everyone's favorite coffee flavor until late December. Those few weeks between the care free oddity of Halloween and the biggest American family holiday- Thanksgiving Day, followed by Black Friday when people trample each other in stores to get a discounted toaster. On some days it gets just cool enough to wear a sweater or a vest, to feel that fresh breeze in the morning, but not too cold to make me wonder why did I ever leave the house today. It's different, it's a bit of a change. Usually we have two types of weather here. While it's mostly hot and humid, we get cold fronts from time to time, especially towards the end of the year. But we never seem to have anything in between. It can rain one moment and then everything feels dry an hour later. I like late Fall in America, because it has commotion and excitement without the pressure of Christmas. Seasonal drinks hit your favorite cafes, but not to worry, it's not December yet. I don't even know what a pumpkin spice is- is it meant to taste like pumpkin or something you add to pumpkins, but I love it. Recently I even discovered a limited edition pumpkin spice kefir in the dairy section of my grocery store, which made me think, Wow, Americans really add it to anything. I also must confess I ordered 40 servings of pumpkin spice late for my one cup beverage system. I thought to myself- this better taste as good as the one sold at Starbucks or I'm looking at a long season of drinking coffee that I don't really like. November and early December are as close to us having a change of seasons as we are going to get.  In only few weeks I'll be reminded that I don't have a family in this country, that I feel like I belong- but not really. For Thanksgiving most of my friends will travel cross-country to be with their families. For a day- all public transit will stop and most restaurants won't deliver. This is a college town for the most part- so as soon as the exams are over until January- Gainesville will turn into a ghost town again. Even on the days that buses will run, they'll cut down on hours and service area. Christmas Day, Thanksgiving are really the days I sleep through. Thankfully Americans don't celebrate too much. All they get is the one day of Christmas. In Poland- you get two. With Christmas Eve being the fancy family feast. New Years Eve is not much of a celebration in Gainesville either with the college kids gone, some people in clubs and the downtown countdown using confetti instead of fireworks at the party shutting down promptly after 12.  And once again I will be left with my thoughts about what I'm doing here, where I should be instead, how I miss home, how everyone just leaves me behind in this town and what my grand plan should be. Do I even know anymore? But for now it's November. I have to say - that pumpkin spice latte sure puts me in a good mood and I can worry about the million calories per cup on another day.

Tuesday, November 19, 2013

Cerebral Palsy parenting

I guess you never stop being the parent of a Cerebral Palsy child, no matter how old the "child" may be. Perhaps it has more to do with being a parent in general- and having a son or a daughter with special needs- only enhances it. And no matter how much time passes- you still feel the need to be there, you still want to help. This was one of the things I realized when I was back in Poland with my family. I moved away from home nine years ago. I haven't been back since 2007. I haven't seen my parents in a little over three years. I live by myself. I haven't had a roommate in ages. And I get by.  I don't have anyone helping me and I survive. And yet, when I got home it felt like my mom wanted to assist me with everything- when I stood up to transfer myself she'd attempt to grab me, often interfering and kind of getting in the way. Frequently checking if I didn't need anything and bringing me things I didn't ask for. My sister in law told me that they even were worried what would happen if I woke up in the middle of the night and I was hungry. She of course told them that I surely knew where the refrigerator was. The odd thing was my mother was never the overbearing type that wanted to do everything for me. I really don't remember that much attention growing up. But then, I thought- the must really miss me.  And this is how they express their love. They have not seen  me for the  longest time, who knows when they will see me again so they cram as much affection and as much attention into the short few weeks we have together as humanly possible. And I didn't fight it as much as I would normally when someone tries to rearrange my shirt or comb my hair. I figured, hey I'm not home enough, let's just enjoy each other's presence. Truth of the matter is, as much would want to my parents are not actively involved in my day to day life. I do God knows what with God knows who and they only hear bits and pieces of it  if I remember to Skype home once every two weeks. And often there's not a whole lot to talk about. Sometimes I get excited about a project or a job offer or a speaking opportunity that blows up the next week, so I don't even bring up the small things anymore. Over here I have plans. I have dreams, I have friends and plenty of stress, but then my parents are not versed if you will in my day to day activities anymore. And I'm happy that my parents have their own lives, jobs and grandchildren that they can give their time, focus and love. We are not very good at verbalizing our feelings, but my parents are very giving and loving people. Last month I was in Munich, speaking about my life with Conductive Education and Cerebral Palsy at the World Congress and I brought my parents along. There weren't many ways they can have an active presence in my life but they wanted to make sure I looked good and had one less thing to worry about. The three suits I sported on different days of the conference- that was all my mother's work. And then when I was sick- half passed out on my uncle's couch in Munich - my mother shared with me that whenever she sees a child in a wheelchair she wants to run up and help. That's how much she misses me. That's how much she misses that interaction. To me, that moment was heartbreaking- because if I wanted to, and I would never want to- I could never be that little kid she used to care for again. Time passes, we grow. Sometimes we grow apart. And it got my to think how this new life that I got here, my new lease on life as exciting as it is for me, took something from my parents- that I never thought about to a greater degree. I was happy to get started- they were letting go of something, and miss it.

Sunday, November 17, 2013

Inspiration is where you find it.

Seven years ago I made a friend. Somewhere between grabbing a sandwich at Quizno's  for lunch and rushing for the last Sunday bus home from downtown. Through the years we were bumping into each other and catching up with stories from our lives through random meetings at places we both would visit often. Like last week- I was getting my usual hot dog with a side of chili and he was drinking a beer at a pub we both like. Not a person I've spent a lot of time with, not really someone I hang out with, but always present somewhere in my social circles and great to have a heart to heart moment with. You know people like this- you may not see them for months at a time, but when they do come back it's like they never left. And given that I live in a place where people never stay- a transient town of Gainesville he might now be my oldest friend in town, because unlike many people I've met around the same time he was from here. As we were catching up somewhere between his cigarette moment and his next round of beer I told him about my trip to Munich and the book I have out. He told me how inspired he was when I was not backing down from my dream of getting into law school again, how I was making the rounds, meeting with everyone I'd have to meet just to convice them of my worth. And then he said how amazed he was when he saw my picture in the newspaper. It wasn't simply a picture. You've taken the whole spread! He remembers sitting with his friends at a table with my story practically dominating the issue. Everyone was impressed with the lengths I would go to and wanted to know more about my battle. And they wondered, what would it take for the school to give in and why I was facing those problems. You showed everybody- he said. - That was over six years ago, nobody knows who I am anymore. And then I said how can I make an impact and anybody care about people like me if I need to reintroduce the struggle and the discussion every five years, because everybody here moves away. You turn around and it's an entirely different city. He then said that I've made an impact on him and that what I showed him had mattered. I went on to tell him how much of an impact he made on me. Around the time we've met he lost his mother to cancer. He then faced a lot of personal problems that would break most of us. And for a while they were getting to him as well. But I've seen him- lifting himself up from underneath everything that life threw at him. Overcoming depression and putting his life back together to be stronger than he's ever been. To become the great person he is today. He was there on the sidelines of my life while I was watching his. And I told him that he's one of the most inspiring people I've ever met. Perhaps this is true about inspiration: maybe it's where you find it. Maybe we can all inspire each other. And I feel it's good to have someone who remembers who you used to be. Who can remind of you of your own journey, who can give you props when you don't give yourself enough credit. Who can remember, when you forget, because they were right with you- when it happened.

Thursday, November 14, 2013

Oh My Lord, I've written a book

As a child I used to go through novels very quickly. There was something about the experience that I can't describe. For me it wasn't simply about the stories, about the words that triggered my imagination. It was the smell, the quality of the paper, the size and the color of the print. Some of them were older than me, older than my parents and there was something exciting about holding a piece of work that generations have enjoyed before me. I was also fascinated by the whole process of putting a book together. Working with text and knowing when it's done. And the amount of talent and imagination that inspired people to say "I have a book in me", years, decades, centuries before everybody could easily print anything they wanted cheaply and in lot of cases didn't even need to print anymore. We communicate quicker, we write faster, who needs a book anymore? I will not write something as trivial as books were my only friends growing up, as I had plenty of both books and friends. Yet, I spent a lot of time in hospitals and rehabilitation centers as a child. Novels made the time pass faster, made it more exiting and less depressing, especially close to night time. At home I had a strict bedtime. You couldn't even have a discussion about it with my mother, which I guess may be a story for another time. The only time she would budge or negotiate with me was when I said "ten more pages". Yes, a printed book is a different animal to me than an e-book or a blog. And I may not have a million dollar contract with HarperCollins, but I was amazed when I first saw my words on papers. Not because what I write is in my mind that amazing, that's the point. It read like somebody else's words. What I submitted as a collection of random Blog postings felt like a story. It was coherent, it made sense. Somehow Andrew Sutton made it work with his editing and that first night I wouldn't put it down. It was on paper, it was on print, it had pictures and covers. Apparently I made it. But I was reading it as I had never seen it before. I met Andrew earlier in the day when I bumped into me at a restaurant and he gave me a sample copy. Apparently he already confused me with another person and wanted to give him the book instead. The next day he was introducing it at a small and intimate book presentation when he asked me to say a few words. At that time my wheelchair was falling apart, I was just off my antibiotics and half-sick in the cold city in Munich. As my dad was playing around with adjusting my sit that day it was tipping over and my knees felt higher than my head. And yet I felt like I was doing something right, like I was making it despite a less-than-ideal scenario and here I was, arriving at the scene with a book, my book, titled accordingly, "Never, never quit". I didn't get a dime for it and all proceeds will benefit Cerebral Palsy related causes in the UK, and still I'm incredibly proud for all the work we've collectively put into this project. So, if you are curious, pick up a copy. http://www.blurb.co.uk/b/4642407-never-never-quit

Tuesday, November 12, 2013

Personal victory moment

Michael J Fox is back on TV this season and this time the character just like the actor- has Parkinson's disease. A lot of the show's intended humor comes from him coming to terms with disability and interacting with the outside world as the man he plays decides to return to his successful newscaster career and is not about to let his condition stop him. You may want to catch the NBC sitcom as soon as you can as the ratings so far don't warrant a second season. Before you say that it may be American audience not comfortable seeing art imitating life and someone with such visible disability, let me say that I've seen Fox, who was a comedic genius of the 80's and 90's in much funnier things than this. Either way- before the show premiered the network decided to promote it with a scene that has the family at the table having dinner together. Fox is reaching out slowly but surely to put food on everyone's plate. Focused, he gets on target.  "Can you not  have a personal victory right now?" his wife interrupts. "We're starving". It's intended as comedy of course and it shows Fox is comfortable making fun of himself. But it made me think of my own personal experiences. A lot of times when I was a child and even a teenager if we were in hurry my parents would just do things for me, "Because there wasn't a time for me to do it myself". Sometimes it involved finishing dressing me up or putting on my shoes, although I could always do it myself. Sitting me in the car by grabbing me from the car although I've done it myself a million times. Sometimes it was about getting me out of my bath or rinsing my hair. Because it was quicker and they did not have the patience. It's odd to think of independence as something you need to find time for, something that isn't practical, something that gets in the way. My mother has always thought of me doing things for myself as some kind of demonstration. Something I did to show everyone that I could. She didn't quite understand that I've done it, because that's what people do. Not to prove to anyone that I can, not to have a personal victory moment. I can either function in the society by myself and do all those things or I can't, and there are no short cuts. It was not being stubborn, but having people do things for me didn't  help me do the things I needed to do on my own. And in ways I felt violated. Not only because someone would literally walk in on me having a bath. But they would override my independence and often violate my personal space because at the time it wasn't convenient. Because you obviously are  allowed to flourish when everyone has time for it. And when that happens in un-does so many things I've done for myself with one move or a harsh remark. I had very few avenues to express myself, very few moments that were only mine. Not a lot of moments that you can keep private, because for a lot of things I had to rely on other people. The more you feel dependent the more independent I wanted to be. It wasn't a hobby or something I did for show. I wanted to live my life. And in life people dress themselves and feed themselves and go places. Do dishes, laundry and shop and clean. I wanted to be normal, but how in so many ways I felt abnormal. I didn't do it to be cute.

Sunday, November 10, 2013

Questions for Peto.

I seem to have dedicated a lot of time in the last few weeks to Conductive Education, the approach to Cerebral Palsy developed decades ago in Hungary by Andras Peto. And for a good reason- as a child I've spent a few years in then world famous Peto Institute, as an adult I became an associate director of a nonprofit running a similar (in concept although not in scale) facility in Gainesville. I was asked to speak about it  in Munich and lastly I credit my independence and functionality to those  years in Budapest. I was also brutally honest in concluding that as involved and as knowledgeable my parents were when it came to my rehabilitation, they knew very little about the ideology and the theory behind the method, because that was information that the Peto staff never volunteered. In one of the comments reflecting on my own intellectual quest to understand what Conductive Education is and what isn't, but primarily to deduce not only what but why I found a seemingly straightforward answer. That the point of it is- to do everything yourself. Some of us may be happy with that response. It may help us sleep at night, but that doesn't begin to cover the questions I have about what went on at the institute. At the congress in Munich I've seen a number of presentations, many of them about the life, the work, the methodology of the methods creator- what he allegedly said and believed about bringing up children with neuromuscular disorders. As I listen to what he had to say about how to approach a child, how a conductor should position herself in a group it became to clear to me that a man apparently came up with a set of principles- not only about   raising kids but what rehabilitation is, what it should look like and what can it accomplish. And it made me ask, since nothing in the Institute was incidental and served a purpose, why do I know so little about it? Here's a few questions off the top of my head:
1. Is there a purpose in having the rehabilitation future mimic tables and chairs when it came to shapes? We delt with "chairs" that had grab bars and "plinths" were just tables and beds you could hold on to while exercising?
2. Why did the plinths double as beds? Was it for efficiency of space or did Peto want his clients to have some deeper familiarity with the rehabilitation equipment?
3. Why were we dressed in those outfits? It may be so we all look the same, and that it was like a work uniform of sorts, but I remember a strong insistence that we would only wear shorts and never long pants.
4. The exercises were divided into sets throughout the day. Starting with plinths, moving to routines involving standing, then walking, then sitting in chairs- was there a reason for having a day planned like that?
5. Was the "overnight stay" part of Peto philosophy or was it simply an afterthought of parents not being able to pick the children up every day?
6. Why were the exercises always in groups?
7. Why were the groups coeducational even as we slept next to each other and had showers scheduled?
8. Who designed the exercise scripts and how and why are they evaluated and changed? The method isn't about perfecting any particular movement after all.
9. How are parents informed about what is likely to be accomplished with their kids?
10.  Peto's alleged principles and beliefs are still honored in the Conductor community. Are they in any way evaluated or confronted with modern science?
11. Why were we assisted from the front when walking and never   from the back?
12. Since the concept is "do it yourself"- why did the kids have bowls of water brought up to them when washing up and never assisted to walk to the washroom. Why even those who were trained to use the toilet were sat by a conductor, in the general room on a chamber pot, rather than assisted into the restroom.
13. The rooms served multiple purposes. We slept and did  morning exercises in one as the  plinths were lined up and put away. We had dinner and sapper and exercised more in another. It always involved the conductors lifting heavy tables and plinths in both every day. I never quite understood the reason behind the ballet with the furniture and going from one room to the next throughout the day.

Friday, November 8, 2013

Going home

Did I say how exhausted I was after my flight from Munich to Philadelphia? In the previous nine hours I could neither sleep or stay fully awake, dozing off between the movies on the plane. And then my back, my neck and other bother parts were either in pain or asleep when I couldn't. I wanted all of this to be over, to finally touch down in Gainesville, but I wasn't quite there yet. Welcome to customs. Before boarding a domestic flight you need to pick up all your checked luggage from one carousel, wait in long lines for what seems like forever and put it on another one. Couldn't they just have gone through my things in Munich since they pre-check my admissibility to America over there anyway? But I didn't even care if they did it anyway. Do with my bags what you will, but with me being  tired, irritated and sweaty, why does it call for me to be involved or do anything? Why can't the bags just check themselves for the next flight? Turns out they can. "He can run with the luggage for you"- said the man with disability services, pointing out a kid with a baggage cart. "But you'd have to tip him". Let me tell you, it was the best spent spare change ever and I was so happy that my mother decided to stick a few extra dollars in my manpurse at the last minute. I just went straight for immigration and then for my connecting flight. This was the first time I have used my green card to cross borders since I got it in 2010. In my mind I could see them telling me that there's something wrong it, that it was all a mistake. Or that they would focus on the now expired visa in my passport instead. I wasn't quite familiar with the drill. Do you show them at once or one after the other and what do you say? My headache was growing and with all the loading, unloading, waiting in lines I didn't even care about the luggage anymore, I was glad I didn't have to think about it anymore, I was done. When I got to the gate to fly to Charlotte where I would catch another connecting flight I went into the restroom and determined I have no strength to go back out. I was too sleepy, my head was killing me, I didn't care what happened next I had no energy. Luckily, modern medicine came to the rescue. I found some leftover APAP pills in my bag and it did the trick. My headache was gone after a few minutes and I could focus on getting something refreshing on the plane. When I got home I found that immigration has gone through my bags. I guess it's standard that they cut the locks, but at the time I didn't know it.  Either way I'm always randomly chosen to have my luggage gone through. Luckily I didn't have anything illegal, but I still worried that some items may be missing and I would have no way to know- the alcohol, the candy- but nothing was. Did I say how much I hate flying? How there doesn't seem to be a way to make a little less stressful, more pleasant experience? How it always turns into this exhausting, taxing production. I wish I could just take a pill and wake up delivered at my destination hotel every time I have to go somewhere

Tuesday, November 5, 2013

Independence and the looming sense of doom.

How did I become so independent? That's the question I've heard a number of times from people who came to congratulate me after my Munich speech at the Conductive Education World Congress. Someone said "my daughter just lets us do everything for her". A conductor commented "I'm the b... who tells the child and the parents that it should do more to itself". And the underlining theme in all the conversations I've had with both friends and strangers that day was "I don't know how to relate to or replicate your experience". I wish I could say that there was one thing I could pin point to and say this is it. This is the defining moment that made me want to be more independent. But I think it came with time. All I know is that suddenly I was the thirteen year old who has his friends over with his mommy sitting around in the apartment. Or having my dad fix me breakfast. It wasn't something you'd share with your friends. It wasn't "cool" having a parent breathing down your neck. When my mom went back to work when I was fourteen I felt like I had a new lease on life. Of course there were the little things I always enjoyed doing for myself. I must have been seven or eight when on the weekends I was away from the Peto Institute my dad would sit me down in the kitchen and have me butter my own toast or cut my own tomato. I'm still not very good at slicing things, but I like to fix something, by myself from time to time. I remember watching American movies with people in wheelchairs who were active and mobile, accomplished and doing things for themselves. I wanted to be like that, I wondered why can't I be? I guess my drive to independence may have come out of nowhere. There certainly wasn't any expectation in my family that one day I'll be making it by myself without anybody's assistance. But I felt crushed and suffocated by the vision of what I thought would be my future. Some version of my life that I would have to settle on. An imitation of life under somebody's care. I guess the fear of what it may be made me rebel against it. But it took tame. And let me say it again, we didn't even dare to dream I'd be as independent as I am today. But then, I line in a reality, in a country that allows me to. And if I don't believe that I can, that I should do it, why would I even try. Yes, I understand why for some people it's difficult to make that step and push for independence. Because what if you are not, try as you may, as physically able to make it? What do you have to fall back on? There would be nothing left to dream about as the illusive dream was just crushed by the harsh reality. What do you have to get back to? How do you get yourself back together. Studying abroad was something I dreamt about for years. But most times I didn't even dare to say it out loud. It's not that my parents are not supportive, they always have been. But the idea of me going somewhere by myself wasn't very realistic, even for me. Such eccentricities. The plan for me was to ideally find a job somewhere under my brother's wing. And then you learn to settle, because this is your life, this is your reality and it wasn't designed with people in wheelchairs in mind. I grew up with an odd looming sense of doom I saw my future as. How do you fight against it? What's the use in trying?  The fear of failure is something that stops many of us from finding out what we are actually capable of . And the drive, the desire to try has to come from within you. Guess what. The more you get a sense that you can function by and do things for yourself the more you want to do it. But it cannot be forced on somebody because you will grow to resent it. Nobody wants to have their life turned upside down, and I don't think it's a Conductor's place to comment on a parenting style or tell the family how they should live. Even it makes perfect sense and the comment comes in good faith they are always the outsider who upsets the dynamic by saying you're doing this wrong, now raise your child like this.I don't think anybody likes it when someone points out all the things in their opinion you do wrong I remember not liking when any of my therapists did that either. For people who spent 30 minutes a day with me at most, they sure had a lot of ideas as to what my mom should and should not be doing. And often the tips were sound. But the delivery, the know-it-all attitude felt offensive.

Sunday, November 3, 2013

Peto: revisited

It was the summer of 1989 or perhaps 1990 when my mother decided to spend a small fortune to investigate the new Cerebral Palsy approach that was making waves in America: The Doman principle. She spent six weeks in Philadelphia learning the basics and the science behind the new method. For days she would watch videos of people with parts their brains removed as a result of gun shuts and injuries. She collected comprehensive materials and books. The lectures were translated into multiple languages parents in audience would understand. The course as my mom recalls it was extremely well prepared. She was shown pictures, data and explanations and the organizers seemed to go to great lengths to have her understand what it does. Theories about how brain regenerates itself and how other parts of it assume functions of the cells that were damaged. She may have not have been an expert, but she was knowledgeable and she felt educated in the field. When it was done it made sense to her- the theory did stick, especially when it was illustrated with success stories that the Doman approach has helped. For a few weeks, their book "What to Do About Your Brain Injured Child" became our rehabilitation Bible if you will, but we soon found that the method is not really suitable for Polish conditions. All the crawling I had to do every day to go through all the childhood developmental stages if you will, required huge apartments and big spaces. The patterning- the passive exercise in which people are supposed to recreate swim like movements by grabbing onto and animating a limb required a team that we simply didn't have. I think my mom even considered hiring somebody to come by each day and help out, that's how much she was on board with this. I really don't care to discuss the Doman principle at great length. In the years that followed it was apparently subject to some controversy and there were people who say that the research was doctored, but whether it was or wasn't is really of no significance to the point I'm trying to make. The Doman did the one thing the Peto method never cared to. Convinced my mom. As soon as she felt she had the tools, the theory and the understanding, she was dedicated to it. It wasn't as simple as "do this exercise, do that movement"- she had a sense of understanding why we are doing every single thing that we do in the system. When she was told to use a plastic breathing mask with me, it was not simply because Glenn Doman, the method Guru thought it's a great idea. She was given an explanation and shown how the brain reacts to an environment with increased C02 levels. The Peto people were very secretive about the philosophy behind everything you saw at the Institute. All that parents could copy, was the visible, the external- the exercises, the tools- without an explanation. Give us your child for a period of time. We'll do something to it, you'll be lucky if we tell you what because we certainly will not tell you why. Is there any doubt why the Peto method has an image problem and Conductive Education is no longer attracting kids and parents like it did 20, 30 years ago? You could say of course that the difference in transparency are simply the result of the fact that the two approaches adopted two entirely different models. They "sell" if you will different things. Peto is a rehabilitation facility. It takes kids in and works with them, perhaps that's the reason why it feels it needs to keep how it works a secret. If you can easily replicate it, what do you need the Peto Institute for? The Doman Principle sold the method itself. It offered knowledge. Training- tools for parents to go and work with the kids at home themselves. You could say that's a marketing choice. But I will tell you that it's incredibly hard to have someone follow you if they don't know what their doing and don't understand why. Especially if you  want them to have faith and dedication to it. They will never be as driven and as motivated  if all you offer as an explanation is a story of some man, a man of science who worked with veterans in the 1940's. The key to Doman's popularity back then was what seemed like transparency and information. The "we're not telling you what to believe but take this data and use your best judgement" approach. My mom felt like she was given access to something. That somebody leveled with her as to what they can do and how. Something that I think none of the other methods that only expected us to do as they say we tried has ever attempted before.

Friday, November 1, 2013

Flying around.

At the Congress in Munich I met a young man with my disability. He has just published a book of poems he decided to call "Love on Wheels" that was presented next to my booklet. As faith would have it, we met again when we both boarded the same flight for Philadelphia. He had his friend or perhaps a family member with him and was in awe that I travel alone. Yet, at the same time he insisted to do most things by himself- when disability services personnel came to put him and then get him off the plane he firmly stated that he will transfer himself in and out and doesn't need help. And it reminded me that many years ago I used to be like that as well.  I have since decided that manifesting against the odds that I'm capable of doing everything by myself is simply not practical. I have just been on a plane for seven hours. My legs are numb and my tailbone is in pain. On a flight my options to find comfortable positions is limited. If I pull myself up into a wheelchair, yes I may have a temporary feeling of satisfaction that I did it by myself, but I also risk pulling my pants down, showing underwear or flesh, that my clothing will shift or turn or get caught or turn. It's simply not worth it. If they lift me and do a two person transfer it's faster, I struggle less and my pants stay on. At the same time he was comfortable having his companion and a flight attendant assist him in the lavatory. I simply can't use those facilities. I was on three flights on my way back to America, they were long and with significant waiting times between them, yet I didn't mind- I was able to comfortably locate a restroom and a diner at every stop. One thing I really wanted to comment on was the professionalism of people assisting individuals with disabilities, particularly in Philadelphia. God knows how many lifting, often heavy lifting I might add they do in the day. And then push passengers in wheelchairs from one side of the terminal to another. They must see their clients often in very compromising positions. Some of them may not be able to adjust their clothing by themselves properly, perhaps there are parts of body uncovered. After so many hours in the air some may have personal hygiene problems. Body odor. Yet all I've seen is the disability agents treating them with utmost respect,  perhaps in an effort to return some level of control over their own circumstance. I have never had anyone addressing me "Sir" in every sentence. And then they were considerate enough to ask me if I needed to use the restroom almost every time we passed one. In the meantime I've heard many reasons why I simply must return to Philadelphia some other time and explore. In a way I  depended on them to get me from one gate to the next and I simply would not have been able to do it myself, but they did not let me feel that. What I felt like was a valued customer, a professional adult who's being assisted with something trivial like picking out a jacket in a bigger size at a men's department store. Was my hair in a mess? Was my shoe undone? Did I stain my shirt with ketchup? They didn't seem to notice. I have to say, it's not like this at every airport. I've seen agents with attitudes, fighting with each other about who's turn it is to take a person across (and not because they both want to do it). I guess after you do the job for so long it gets harder to not see people in wheelchairs as burdens. They stop being humans, they turn into loading and unloading like a sack of potatoes. A statistic. A quota. Something you have to do instead of taking that cigarette break. It's nice when it's not like that. When you're surrounded by kindness, respect and consideration. And a twenty minute interaction with somebody actually makes your day although you're half asleep in your wheelchair and just trying to get home, bracing for yet another painful, uncomfortable flight.

Wednesday, October 30, 2013


"It's very rare to have an occasion like this, when something good happens in this courtroom, a moment to celebrate"- said Judge David Glant nearly three years ago as he put me under an oath and sworn me into the profession, officially ending my many years of struggle to become a lawyer and setting me on a new adventure. He didn't really like the vows that came with the paperwork, so he wrote his own. A series of questions I had to answer "I do" to, that I don't really remember, other that they ended with "So help you God". You could see he was really excited and happy to do this, something unusual and different from the criminal trials he was involved with. When I asked around I've heard that he was tough and fair, with some nicknaming him "father time". And you could tell he was a family man, a generous donor to the Klausner Foundation when I was still involved with it. As he married Jordan Klausner's mother he became a part of my story as well. And because of him, rather than doing it in front of a notary public at a gas station or in a crowd of people at a courthouse in Tallahassee I got to take my oath in a real courtroom in front of a seasoned judge with my friends to applaud no one else but me. My own special day and he was not only simply there, he made it happen. And you can see how I think of that moment as defining in shaping who I am today and a symbol of a point when things seemed to turned around for me.
 My picture with him was the header for my blog for the longest time and now it takes up an entire page in my book  "I look forward to see you practicing in this courthouse"- he said- "We are very wheelchair friendly and we have a modern building". Of course that never happened as I never set foot in a criminal courthouse again and - for the record- the carpets and my wheels don't really work together however modern the building may had been. But it was my honor to have Judge Glant as part of that milestone. As I returned to Gainesville from Munich my Blackberry picked up a message from my local Bar association that funeral services will take place Wednesday, the 30th at 11am. He was 63, my father's age. It made me think, yet again about how life comes at you fast. My condolences go to his wife, the entire Klausner-Glant family, and everyone who had a privilege to know him and work with him

Monday, October 28, 2013

How my Skype account was stolen

Between a wheelchair that was falling apart, a keynote address in Munich I was worried about and an onset of flu, one other thing made my European adventure even more action-packed. Two days before I boarded the plane to Germany I noticed that my Skype password stopped working. Looking through my mailbox provided a quick answer- someone with a Russian email account transferred my screen name away from me. The only thing I got was an email notification, one that I disregarded as spam, because I don't read or understand Russian. The system did not ask me to confirm it, just informed that it was done, with no way to undo it or inform the administrator that it was not my intent.  The login was one thing, I could have easily gotten another, but Skype tends to store recent payment information with the account. I looked with horror as my American Express card continued to get charged for more Skype services day after day and there was nothing I could do to stop it. I could not log in and have the card removed as the thief changed the password. He kept buying and buying and buying some 75 dollars worth of service as I watched. Luckily, American Express is very good at addressing privacy concerns (mostly because it doesn't have a preset spending limit) , so the first thing we did is had it stopped from any further transactions with Skype. Then I disputed charges that have already posted and again, hats off to AmEX for making it as simple as easy as possible. Mind you, I was calling from Poland and from my mother's Skype account. Getting my own back was a more complicated story and I feared I would never happened. Considered this: I had the screenname rstrzal for about nine years attached to my university's email. And here I am having to prove to Skype that I'm more entitled to getting it back than someone who stole it only a week ago. After a transfer that, again, nobody asked me to confirm, verify or click anywhere. Yes, I suppose I should have had a longer password. But then after a decade of having no problems you really don't think anything bad will ever happen. Getting it back caused a lot of problems. As I've had it for so many years I wasn't really sure which email I exactly registered it with, although I had three contenders, what month and year it was, if I was in Poland or US at the time. I remembered few of the latest phonecalls that I made, but I use it almost exclusively to call phones, not screen names. Outside of my mother's and brother's I struggled to remember any of the contacts on my list, since I mostly added them years ago and never contacted them again.  Luckily my Microsoft password was linked with Skype and I was able to access my lists that way. While in Munich I even started a new account- Lawyeronwheels- thinking, well, maybe it's time to embrace this new identity I have created for myself. All this to transfer my screenname back to that same email someone stole it away from after only a week. Doesn't seem like nine years and even days should be on equal footing. I've initiated chats with Skype agents four times before all the information finally matched their records, but finally it worked. Most funds used up and contacts deleted. The internet in my hotel was patchy, my Blackberry refused to work with it completely and I was staying up with a chat agent the night before my big speech finally getting it to work. And I was worried about my financial information. I had to phoneplan active on my American cell back in Europe, so I needed it for emergencies. Like call my parents as I'm boarding a flight to Warsaw so they know I'll be an hour late. I needed Skype to contact people back in America and I rely on it a little too much. But it made me think how our credit card information is never safe. And I'm surprised how Skype doesn't have better procedures to cut the payment forms off unless I give them information like what month I registered my account in 2004. But then  it feels that giving our information anywhere always puts us at risk. I ca,e home to a notice from Adobe that my data have been stolen from there as well. As far as they know  the thief may have gotten their hands on a way to decrypt credit card information as well and they are putting me in contact with some identity theft monitoring agency. It wasn't my fault, yet it still happened. Seems like there's no way to be safe online even if you do everything right. There's just too much sensitive information floating about us on the internet for me to sleep well at night. How do you feel?

Thursday, October 24, 2013

"Would you ever go back to Poland?"

Every time I see my family again I fall to pieces. It dawns on me how much I miss them. How much I'm not there. How they live their lives in Poland while I live mine so far from home and all we have are those glimpses, those moments when we connect and get sense of who we are once every few years. How time passes, things happen and change and those instances are all that we get. And that's when getting back to my reality, the life as I know and built for myself gets really hard for me. It's when I'm back with my parents that I ask myself how do I ever go on without my family around me? But then I have friends and hobbies and responsibilities. Places to see and commitments. Fun evenings and work to do. Causes I believe in and passion in what I do- life goes on. There are times that I get really sentimental about my journey, but that passes with realization how much more I get to be me in the place that I am and how much  better my life is now that I ever imagined in Poland. During the ten days I spent in Warsaw this month my dad asked me if I ever think about going back. As he did my wheelchair fell into a crack in the sidewalk. And I had to say: As much as I miss the people I don't miss the place. The temporary wheelchair we took out of the basement for the time that my regular one was in repair, big, bulky, heavy- became a perfect illustration  and a metaphor for my life in Poland. I couldn't move it by myself, I had to be pushed. And the moment I sat in it I felt powerless, with my energy drained, and at everybody else's mercy. Accessibility isn't and never was a priority in Warsaw. We waited some 45 minutes in the cold for a street car without steps, letting three that came before go. Everywhere I went I saw cracks, stairs, steps and high thresholds. I guess I could make it here if I had a permanent assistance getting around, but why should I compromise on my quality of life. My brother and sister in law wanted to take me to a nice, high end restaurant. Three steps lead to the door, luckily the greeter was there to help carry me grabbing the side of my wheelchair. I also wanted to see a play- we had go through the backstage because there were fewer steps if we went around the building. Needless to say I would never be able to do it by myself. I would like nothing more than to be able to experience Warsaw through the eyes of my brother and father. Restaurants, cafes, shops, cinemas, I hear it's an amazing city. They speak of it with such fondness. But for me Warsaw meant home, school, an occasional trip to a shopping gallery, but mostly nights in front of TV. I don't have my places there, venues I remember, think about and miss. I don't connect to Warsaw on a personal level because it never was welcoming and accepting to me. I have more places that I do miss, that feel like my own in Gainesville. And I realized how much life in Poland taught me to expect less. To dream smaller. To mold who I am, what I want and what I do to the wheelchair unfriendly reality around me. In Poland accessibility is a nice surprise. In Gainesville it's something I expect.