Monday, September 29, 2014

You don't remember me

"You don't remember me, do you?"- said my regular bus driver this Sunday as he was helping up the ramp and strapping my wheelchair down. For a nanosecond I wanted to say, "What are you talking about, I see you every week" but then I realized he meant from before. The funny thing is, when the new route assignments started this August my first thought was that he looked very familiar. I tried to place the face, but the more I tried the further I was from solving the mystery. My last conclusions were that it probably was somewhere on campus, but then I figured he probably just looks like someone that I used to know (and I had no clue who that would have been either). Otherwise he'd say something instead of calling me "Sir" every time I boarded the bus. He explained that he used to work at the student union and as it turns out we used to speak from time to time, mostly every time are paths cross. The downside to knowing a lot of people and getting introduced to more by the month is that you end up having a lot exchanges with a lot of people that come and go and you end up not knowing them very well. Facebook and social media make it even more confusing. I could be at a bar or at a store and I see someone. It's very hard for me to tell if I know them in person or that I've just seen their picture. and the more you see a profile or a picture the more familiar a person in it becomes. I've had a few times when I went into a bar and wondered for a good fifteen minutes whether I know the group that sits in the corner and if I should say something, only to determine that I've seen them on the internet in a picture a friend of mine shared. Another true story: When I was spending time with my friend Josh in DC two years ago, he introduced me to a few of his friends. One of them looked incredibly familiar. "Have we ever met?"- I asked. "I do't think so"- he said. How could it be otherwise. He lived in Washington for quite a while and I just flew in from Gainesville for the week. Then I realized what the answer was. For over a month before I got there, Facebook was suggesting us as possible friends. I didn't meet him before, but every time I logged in I saw his face as the website insisted we connect. Having that picture popped up so many times it was in the back of my mind when we actually met and that's why he looked so familiar. I try to remember who everyone is and I pride myself on my ability to maintain a large network of friends, striking a conversation with anybody and often remembering a fun fact about them from many years ago. But when you end up with over eleven hundred friends on Facebook, it's hard to keep track of people given how they change names, get marry  and sometimes you didn't know them that well to begin with. But I was very glad that we got to the bottom of who my driver was. It was bugging me that I couldn't remember. And it makes me happy that it was someone I've actually interacted with in the physical realm. Shame that I couldn't remember. As I was rolling off the ramp to do my weekly shopping I said: "Thank you for solving that mystery".

Saturday, September 27, 2014

Be safe

The city's on high alert again. If you live far from campus like me, you probably don't notice until you get off the bus to see men in safety vests escorting groups of young women. When they saw me rolling up they asked me if I needed help getting anywhere and advised me to "be safe". Three police cars on separate occasions pulled up to see if I was fine. There are cards, notices and signs all around reminding students not to walk alone at night and what numbers to call in case of emergency. The night buses added one extra run to make sure everybody gets home safely. Three female students fought off  rape outside of campus in the last few weeks, with another one attacked in a way that's not matching the other incidents. You can tell the atmosphere is getting to people. I feel it and I'm only there once a week. I have always considered Gainesville to be a safe city. There's quite a few driving accidents and things get stolen, but nothing quite like this. It's about the only place in the world that I'm  not scared going shopping in the middle of the night. My outlook hasn't really changed over the years although eight years ago I was held at gunpoint at a Subway restaurant when I decided to go for a snack. Still, I'm more concerned with getting hit by a car as I cross the street than I am with getting attacked by someone. What adds to the panic, I think is the atrocity of the act coupled with randomness, Months ago, another story grabbed the headlines. Young student, an average guy, disappeared without a trace. Posters with his picture and byline "Have you seen me" popped up across town and really spoke everyone's imagination. Yes, it was horrible that it has happened to anyone, but given that he was just like anybody else and it seemed like it could have happened to anyone as well . It all contributed to this uneasy feeling we've all had looking at his picture. He was last seen in areas most students go to every night, heck I used to go there when I was younger. As tragic as it was I think we were in some way relieved when his room mate was charged with his murder. The motive- one of the oldest in the book, jealousy over a girl. The story was no longer a mystery, the disappearance was no longer random and Gainesville was safe again. It wasn't the first time it recovered from a gruesome dark story. Over twenty years ago a man nicknamed the Gainesville ripper had locals in fear as he broke into people's houses and murdered eight people. Those who remember that year hear tell me that you could have sensed the fear in the streets. That it affected everyone, young and old, male and female students and resident. But thankfully the reason why we can  reflect on those years is because nothing comparable has happened since and the story becomes more of an urban legend that students tell each other by the camp fire. Today we're reminded of safety again. Everyone has an opinion. A bus driver told me he believed that the guy would never be caught. With all those patrols he will never try again- he noticed. But then the campus has always felt like the safest place in the city. Well lit, calm and quiet with plenty of security  and cars going much slower because of the stricter speed limits. And yet, when something happens  it forces us to reevaluate how we feel about our own city, about our own safety. Well, you could say that in places like New York, Chicago or even Jacksonville things like that happen everyday. But they don't happen here. For now, the driver sends me on my way with "Be safe". Until we can all feel safe again.

Tuesday, September 23, 2014

Somebody should do something

Everyday, going in and out of my apartment I cross a brick road that serves as the parking lot for my complex. It's old, uneven and full of holes, but it fits well in its historic aspect with the rest of the atmospheric,downtown area. It happened a number of times that my wheels got stuck in one of the larger ditches. I would then use my legs to push myself out balancing from one side to the other, lifting my front up. It also happened that I miscalculated, flipping my chair entirely. My neighbors would often see me struggle getting around with my wheels getting between the bricks. "It looks hard"- they would say, "Somebody should do something, somebody should tell the management. I would reply that I tried, that I've been told that the street is historic, that the way it is is part of the old town feel and look of the area and they say they wouldn't want to touch it.  Over the years I pretty much got used to going down the street that way and after a while, I stopped complaining. I guess you can explain anything to yourself in my mind. You get used to it and then you move on. Just last week I was having the same conversation with another neighbor. She nodded her head, commented on my struggles and said, "Somebody should do something", "Somebody should say something. But then, instead of nodding when I said that my complaints have fallen on def years and moving on, she said, "I'm going to the leasing office right now". "It might help to have somebody else get on them about it". Perhaps two, three days ago I noticed that what used to be a big tear along the road is now smooth and filled. I think it's asphalt, whoever did it cared very little to have it match the surrounding bricks and it's visibly darker. But what matters is, it's fixed, The girl went in, complained and had it done. Something that I was previously told was undoable and that I struggled with for four years. She was the straw that broke the camel's back. And it seems I'm constantly reminded of the importance of not giving up easily. If someone says no, ask again. And then again. Or try a different approach. If you say "Somebody should do something" don't just nod and walk away. Why shouldn't this somebody be you, why can't the time be now?

Wednesday, September 17, 2014

Don't feel sorry for yourself.

My mother thinks that I focus too much on disability aspect on my life and she finds it depressing. In her mind I complain and dwell on negativity. Her response after she read a few of my recent posts? You can always go home. It's funny how you can look at the same thing and depending on where you're sitting get a completely different impression. I've designed this blog to make people think about things they usually don't have to, to stop and wonder what it must be like and inspire discussion. Some topics were lifted directly from my exchanges with Andrew Sutton, who published my book, "Never, never quit" a year ago. He appreciates my perspective and  given his encouragement I'm only willing to get into it more. My foundation's launching the  Help Us Tell Your Story campaign in the next few weeks and yes, we've been looking into disability issues a little more. Our entire team is trying to develop a line of products and programmes  stemming from those tales. So, we had to get into the topic a little. Those of us who never had the experience and the rest who may not have had that particular experience.That take is a product of our weeks and weeks of  discussions: of what it's like to have a disability, but also how limitations not only manifesting themselves in inability to do things, but perceptions of the outside world influence you and your  self image. My Creative Director has particularly taken a  lead on this one- bringing me stories of wheelchaired rugby teams and programmers who code with their feet and have no arms. We've developed a 100 questions, grouped in 10 categories to help shed some light on these amazing people. But, at the end of the day it's hard not to ask: how is my disability affecting me, how would I act in these situations, who would I be if I wasn't in a wheelchair.

 The fact of the matter is that CP has a prominent place in my life. It's key element in some aspects, not so much so in others. I feel it would be ingenuous of me to acknowledge that some ways it effect me. Yes, I have a life, I have friends, I go out, I have moments good and bad, I take spontaneous trips, I meet new people, I do coffee, drinks, karaoke, but it doesn't make for a good blog. I have things going on right now that I couldn't even discuss right now and I feel I'm on a verge on something big. This blog has an angle- that I stray from from time to time and it has one on purpose. It will not sound modest, but I'm proud of myself for handling things life has thrown at me so far. to me the key is how I raise above it, while my mother I imagine sees it as a complaining and venting tool. One thing I will say for myself- I have never allowed my disability to enable me to feel sorry for myself, or be an excuse for not being able to do things and a source for demands or grievances. I'm constantly reminded that not everybody's built the same way.

Monday, September 15, 2014

A girl from B-11

Recently a girl I've never met decided to stop and say hello as I was rolling up to my apartment complex. Must be a neighbor- I thought. I couldn't even tell you how many people from my building I recognize and nod politely and I see everyday. I don't know their names or anything about them, but sometimes I exchange a sentence or two on the weather, something the landlord has or hasn't done or how the Gators performed. It would have been embarrassing to introduce myself  at that point, so we continue to smile and nod and wish each other a great day or passing each other by the mailbox. An hour or two later the girl saw me again and decided to acknowledge the fact that isn't this a funny coincidence, we seem to be bumping into each other all day. A lot of people seemed to be walking back and forth between the parking lot and the building, so then it occurred to me it must be the move in day. Although I have been moving quite a lot within my apartment complex over the last five years, it's been a while since I had to go to a place that it's new to me entirely and pay attention to such dates. To some people this happens every year. As I got into my phase and started making my way to my door on the other side of the grass, the girl that I didn't know stopped me again. They were just bringing in her belongings. Her friends, her parents and some other people were to help out and they all came outside to introduce themselves to me, as if I was a friend of hers that goes way back and has interesting story to tell, rather than someone she just met that day. But that's not the funniest part. She was moving into my old apartment. Well, not the one I just moved out of,  that would be too strange. but the one I lived before that. The tiny, tiny studio. The place - that were we unloaded all my packed up belongings in trashbags piling  them up, they still took up three quarters of the floor. A place that has more of a kitchenette than an actual kitchen (although it did have a refrigerator). Very little counter space- put away any appliance if you want to plug in anything else kind of a place. A kitchen so narrow that they had to remove the sliding door obn the left side for me to get by in a wheelchair. I don't even know if you can call it a kitchen. As you went in, the stove was on your right, but your clothes closet was on the left. Yup, my suits used to hang in the kitchen. Not to mention that the "closet" wasn't big in the first place and I've had a lot hard time figuring out where to store everything else. I remember having bad raisers and boxes sliding from beneath my bed just to get a bit more room. I remember my parents were shocked I would choose to live in a place so tiny, and then spent three weeks putting shelves on every wall imaginable so I can put my things away. We've also had a hard time fitting my portable washer and dryer and my had to make the stand more compact my cutting a lot of the metal. I'd say it'll be hard for anyone to live in a space that small and not feel cramped.  At least if you have any belongings at all. But then I was in a wheelchair, so building large bookshelves all the way to the ceiling was not an option for me. As I left them they we getting excited about wooden floors. I'd say, no matter how shiny they may be or what color you pain the wall, there's still only one window that doesn't give much light and the room is tiny, which you only realize more when you put the furniture in. I hope she's still as excited about that place when she moves out. I know I couldn't live there.... again.

Wednesday, September 10, 2014

Cerebral Palsy adulthood

A few days ago I was asked to support yet another Cerebral Palsy campaign aimed to bring more awareness to pediatric care.  I applaud causes like this- I'm pretty open about my own experiences growing up and going through life with CP. This particular one was about T-shirts meant to generate income for treatment of prematurely born babies. More power to people who decide to put something like this together and do something for others. I hate it when after a sentence acknowledging someone's creativity, hard work and kind heart a "but" comes along, but here's mine. I'm really concerned with Cerebral Palsy being seen as a childhood only condition. All fundraising efforts that I've heard of all the CP campaigns that I've seen are about children. As if this is a condition that you can magically grow out of when you turn 18 or 21. Like it's something that passes with time. Yes, with the right type of education you can be independent and functional. With rehabilitation you can have more mobility and ability in your limbs. There are perhaps as many palsies as there are those who have it, because everyone's is a personal, irreplicable story. With the right kind of approach you can limit how it effects you. But you never stop having Cerebral Palsy. It sees to be that with all the resource, time, money and effort (as it should) focused on children and babies, beating CP, combating CP, eliminating CP or however else you may see it phrased, the expectation is that it will somehow go away if you work hard enough. And if you would evaluate the number of resources and literature available about this condition you'd indeed assume that it's all about children. Part of it isn't hard to understand. A lot of non profits, campaigns and fund raisers are started by parents. Parents who don't have the right resources who colloquially speaking are "pissed off" that their child was placed in this condition and want to give them every opportunity as they grow. The interest dies off perhaps somewhere between high school and college, maybe when the kids themselves emerge as people with their own ambition no longer wanting to be seen as a cause. On the other hand- we must admit, babies are cute. Kids at harm, hoping for a better tomorrow, to be able, to be normal speak to many people wanting to make a difference. My concern is that they will see CP as "preventable" or "curable" with big enough of a push. And I have to say, having the same condition I've had 20, 25, 35 years ago I don't see a lot of therapy, information, networking, treatment options for people like me. When you think CP you think- babies- when you think of adults with disability- a horrific injury comes to mid. It starts with the condition's name - in Polish it translates as "children's palsy of the brain". It is to mean of course to indicate that you get is as a child, but through its' name it remains forever linked to childhood.

When I visited Poland in 2007 I wanted to plan for a knee surgery I skipped on when I was a child. The spasticity got to me and I wanted some more movement. We dedicated quite a few days going through surgeon to surgeon. The regular doctors had no idea what to do with me with one famously telling me to have my legs ampuated. It wasn't until I met up with my childhood doctor that she pointed us in the right direction. A man who operates on CP children, understands spasticity, knows CP and focuses only on that. I was planning on returning the next year to have it done, but immigration situation that wasn't resolved until much later prevented me from taking that risk. You'd think that United Cerebral Palsy would be a great starting point for someone like me, right? Turns out, despite it's name it's actually a general disability focused organizations. Those interested in CP causes may feel misled. Famously, there was a campaign a few years ago to have UCP drop its name. As an established brand they were of course not willing to do it, but you can't blame those mothers of CP children who felt donors and grant makers may feel that they're supporting an actual Cerebral Palsy cause. I'm as spastic as I always have been, with some aches, pains and stiffnesses setting in and later life. But I have less support. One of my Directors who I lured to my Foundation told me that she was excited we didn't focus on or singled out children. Because- she reasoned - as bad it is to grow up with a disability, kids usually have parents to guide them along and families around them. Adults are often left to fend for themselves.

Sunday, September 7, 2014


How tall am I? It's hard to say. It's been a while since anybody saw me standing. When filling out applications my parents put whatever number felt reasonable. Depending on how generous they were, I was anywhere between  171 to 178 centimeters. It's not like there's a way to know or anybody will check. When I was getting my Florida ID card for the first time, the DMV official asked me for my height. "Your guess is as good as mine"- I said. "You look 5- 08" she replied. And that's what I've been telling people ever since. It's not that I simply can't stand. If you try to lift me and get me to lean on something my knees are perpetually bent and my head is much lower than it should've been.It feels that with every passing year the spasticity and my body puts on my knees only increases. They bent more and more and it feels like my body weight presses me more and more to the ground. The last time you could see me standing I was in my leg braces with straps physically blocking my leg in the straight position. Without external force used to lock the brace (which was always painful and as I grew required more people to do it) I would never be able to stand. I remember one of the last few times we tried it I noticed, being I think 17 at the time that I towered over my mothered and it was a bit of an emotional moment for us. I guess you can take some measuring tape along every bent part of my body and then you'd know what my real " body length" is. But then, one has to ask, what is the benefit of knowing the height of a person that never stands? That couldn't stretch out their legs if they wanted to? Perhaps more informative would be to measure me in my sitting position from the ground up to the top of my head. This is how people see me everyday, and no doubt how they described me if I became I wanted man. But then, all chairs are different. Even mine, when one of the bolts ripped away from the metal frame suddenly became lower. Perhaps they should force me to stand on my bent knees, just to measure me. But that changes not only with time, but also depending on how tense, tired or relaxed my knees are. Maybe they should measure how body spreads out, from the highest point on my head to the furthest I can reach with my feet. A lot of those places, documents and institutions that ask for things like height, weight or "marks" are simply not prepared to deal with people my wheelchairs. Despite being in one ultimately all my life my passport says I have no distinguishing marks. It's not that I've been hiding either. I get that they're looking for mostly facial features, but if border patrol was ever to look for me don't you think that something about my sitting position or four wheels would be a better hint than any mole or blemish? My Polish ID has some unrelated leg condition listed in the remarks sections, because I guess it was the closest they had. Time and time again I'm reminded that this world wasn't created with people like me in mind. And when dealing with bureaucracy sanity always leaves the building.

Friday, September 5, 2014

Running through a meadow.

When I was very young my mom would ask me to name three things I'd like to have happen if a genie or a magical gold fish granted me three wishes. She'd be very surprised if I threw in "walking" as the third one, not a top priority. "You just wasted a wish"- she'd tell me, when I finally did "because that would have been one of mine". I guess that story kind of summarizes how I saw the need for "walking" over the years. I saw the convenience of getting around with ease of course, it'd allow me to be more like others, to stand out less, to not need special accommodations and solutions just for me.  Others probably wanted it more for me that I ever wanted it for myself. Of course, I saw the value of what it could give me, but by itself it really had not much value as a goal. I never had a dream of running in the meadows only to wake up to the harsh reality. I don't know what it's like to long for it or to miss it and it's mostly the outside world that has been projecting onto me their own interpretations of what I think about think and feel about. A few things made me think about what "walking" is to us in a second consecutive article. I have a friend who's looking at the gloomy perspective of becoming permanently disabled, losing control of one of his feet. To me, the most important part is how he emerges out of the process- if  the worst happens and there's nothing he can do to prevent it. That whatever the news is, he knows that he still have a life, hope, passions, ideas and work. I fear that that scary perspective might be blocking him, shutting him off from the world only making things worse. I also know that it's not something you can rationalize or tell him what to feel. You can't shake somebody to simply get over a thing that's so tragic- its their own process that needs to take its own course in its own time. I also realized that I can't really relate very well to what he is going through as this is one of the aspects of disability that I have ever experienced. As an intelligent human being I can of course try to grasp it, as I understand pain, loss and suffering and I can liken it to things I felt and been through before, and I can empathize with another human experience, but it's not the same as knowing. I felt he needed someone who understands what it must be like better, so I asked one of my board members who after a botched, life threatening brain surgery became severely limited and yet got on with his life to reach out to him. And then I was left questioning the "value of walking" yet again. Is not being able to walk what my friend is afraid of or what it means to his life? Is he afraid of changing or adapting to new ways of getting around, or is it aesthetic? Will he feel less then if he won't be able to do the things he was able to before with ease. Will he be able to carry on with his life or will this one limb, body part just take over every aspect of his existence. How is it that the things we took for granted become major missing parts when we can't do it anymore? I hope, if the bad news comes, that he doesn't go through life romanticizing what he has lost. That he doesn't dream of running through a meadow although he never needed to run a meadow before, he doesn't focus on the things he feels were taken away from him. That, disability or not -that he sees himself as capable as he always was.

Tuesday, September 2, 2014


A lot of people were shocked by true confession that not being able to walk is not the worst thing about being in a wheelchair, at least for me. A week ago I ranked having to ask people for help, not being able to reach things on the highest shelf and often being left behind when my friends decide to go up a floor as aspects that affect me every day much deeper. Perhaps it's because today my wheelchair is fused with the essence of my being that I can't imagine my life otherwise The world as I know it I experience from a perspective of a wheelchair. All my future plans, my profession, where I go and what I do involve me having a disability. The way I see myself, the way others see me, how I think, what my dreams are, what inspires me is all linked to it somehow. I have 35 years of experience in Cerebral Palsy and you could say it's all I kmow. Who would I be if this lifetime of disability didn't bring me to this place and this moment? Maybe I wouldn't like that person. As we develop the "Tell Us Your Story" campaign we get to talk about disability in great depth. About what it means to me and what it means to other people. And how the outside world sees it. I've of course walked before. When I was a child my parents would grab me under my arms and powered by their strength I'd run around with my cousins. The Peto Institute put me in big, heavy leg braces that would go into my orthopedic shoe and hurt my feet. In school my parents would grab me under one arm and walk me up the stairs to class. By the time I got there I was exhausted. I guess to me any form of walking always meant pain. Without braces my knees would be perpetually bent and my legs would feel tired very quickly. I've done it all, walking sideways up the stairs holding onto railings, walking with a person in front of me going backwards holding my arms, my body weight is just too much for my knees to handle. Imagine going somewhere if you can't straight and tell me how that feels.... And walking in braces, big bulky metal braces was jus painful. I've always had flat feet and as I walked about with two metal rods locked in my shoes I developed pretty severe blisters. Cremes, band aids nothing seemed to work. Locking the braces straight was a painful procedure too, as we had to fight my tensions that every year grew stronger. Drawing the step from the hipp to lift the leg wasn't easy, wasn't graceful. Took a lot of energy and because of how complicated balancing my body weight in something like this, wasn't a quick way to get around. Ten rounds around my apartment and I was done! Sometimes in order to make things more interesting we'd go outside, go on a mission. Like, get to a video rental store down the street. Suffice to say, I never made it. And then releasing the lock on the brace after I was done for the day. A great relief as my legs went numb.

 A year or two ago I had to go up a few steps to see my friend's artshow. Dragging my feet   I ruined my favorite shoes as my friends assisted me under my arm. I couldn't wait to get back in the chair. What can I say, walking just isn't my thing.