I know when my body tells me to take care of myself better. I have to eat regularly. Sleep on a right schedule, keep hydrated. And yes, I also need my caffeine fix. It happens every few weeks, that between all the planning, strategizing, staying up and stressing I forget to follow these simple rules and I end up paying for it. If I sleep too long or too little, if I don't eat and drink quickly after getting up I'm ending up with a migraine. And I know at that point over the next few hours it will grow stronger and stronger eventually putting me out of commission for a day or two. It sometimes helps if I grab a meal and nap some more, but a lot of times it's just something I need to get through. Eating, sleeping and relaxing. No big project to get to, no email to write. If it wasn't for the headache the day wouldn't be half bad. I know how it starts. With a piecing pain under my eye that spreads pulsating to my forehead and I feel it in my sinuses. When I was younger I would just power through it. Go out, get some food in me, drink some coffee, I might feel better. But then the pain just grows stronger, it's harder for me to ignore it and focus, I get sleepy, sensitive to light and I'm very uncomfortable. Last time this happened I decided to grab a hot dog and almost dozed off while eating and then couldn't finish it. And I ended up feeling nauseous. I used to be hellbent on not letting it ruin my day, but today I decided to take it easy. I got up late, then my law practice partner called me from Jerusalem and I skipped breakfast. Big mistake. A rookie mistake. I tried sleeping, eating, drinking water, drinking coffee and sleeping some more. Clearly my body wasn't cooperating, so I ordered cheese stix from "Five Star Pizza" and went through my DVR. I was really hoping to join my friends for karaoke tonight. Tuesdays and Thursdays are my nights to socialize, have fun and drink. And then I had to sit this one out. There's always next week. The world can wait until I feel better. I guess that's a new notion for me, not having to prove that I'm stronger than this, that the mind always has to win over matter. I hate feeling like this, being grounded, giving in to weaknesses, not being able to do what I planned because of something within me to stop me in my tracks. But I can't fight it. So today, body, you win. Let's make a deal though- Thursday morning I expect to be a 100%.
Monday, February 25, 2013
"If you're lonely that you need to pour your heart out, come back home"- said my mom after mentioning she went over some of my posts. I'm neither sad, depressed or lonely, but it got me thinking- is this what people who read them see me as? How could people, and those closest to me be so wrong at trying to get me? How did ever get so misunderstood? Part of it is of course that my family's English is not as good as mine. They may not be able to catch certain nuisances. But the bigger issue is that they have a very limited glimpse into my life. They live in Poland, I'm in America. I call home typically on the weekends, these days I should say every other week. When I do I don't really want to bore them with every single aspect of my day. I'm more interested to hear what's going on back home. Whatever it is that they miss in trying to figure out how my life is doing they get from here. And my blog is not a diary. I don't post simply because something happened to me and I need to vent. I try to present different aspects of my live with disability. Things that I think about happened to me at some point, yes, these are emotions I felt, but these are not issues on my mind right now, front and center. I try to bring up things that I experience or have experienced, but I see rarely discussed. Most of the time these are features on particular aspects, rather than day to day chronicles. I try to give every post a concept or a theme. A lot of them revisit some experience from my childhood. How I felt and what I remember. Often, I contrast it with a perspective from my adulthood. My life is timeline that I skip back and forth. Many times I think of things to write days in advance. Of course on some occasions I have something strange or mean or funny happen that I just have to share with my readers, that pushes back all the upcoming ideas that I have. The "2 Blonde Girls" from last week is a good example. I've experienced a lot of drunk rudeness earlier that night and then went home and wrote about it. Yes, I was angry and annoyed, but mostly it was meant as a point of discussion about how people behave rather than my feelings and attitudes. That I was angry for an hour matters to me less than being able to show you- this is how certain people behave in context of disability. I try to talk about things that I see as issues. Because the more I talk about how my disability affects me, how I see it, how I see others the more you can understand me. My mom thinks that my blog is depressing. And perhaps she has a point insofar you don't see me talk about a fun night I've had at a bar somewhere, met great people or had an amazing dinner. Maybe I should think of incorporating some lighter stories into it. I certainly don't want you to think that I think about Conductive Education all day or visit establishments looking for missing ramps or bikers blocking wheelchair access. But I like spreading awareness. This blog is something I do three times a week. And sometimes I really don't think I have a good topic to discuss. Sometimes I write about something requested or inspired by others. And sometimes it gets in the way. Right now I'm in the middle of something. Let's call it Project X. You may find it silly, but I can't talk about it yet. I feel I only have one chance to announce it properly and I need to have all my ducks in a row. For now, rest assured I am not depressed. A man walked up to me tonight, and although I didn't quite catch who he was he patted me on the shoulder and said "I read your blog all the time, you're a good guy". Well then, at least somebody likes it.
Friday, February 22, 2013
Scan all your fingers, separately, one by one, three times.. Then roll them. Not too fast, not too slow. Then put your entire hand on the surface. Easy enough, right? When you have a disability all those small task you wouldn't give a second thought become major obstacles. It may sound simple- when I was applying to the Florida Bar I needed to have my fingerprints read into their data base. I think immigration was using the same system. Lord knows, I've had the very same problems because nobody made any provision for people like me. They used a machine connected to the computer that looked like an oversized slide projector. Getting it down so I can reach it was challenge enough. Those things were usually on the table, with a cable too short to put it somewhere else and lower it for me. To even start, one person would have to grab it and hold at angle for me, while other person dealt with my hands. Everything was fine until we got to my spastic right hand. To put it simply- my wrist and fingers get stiff and tense. The more nervous I get, the more it intensifies and I can't control it. The more I can't control it, the longer I'm stuck in front of the machine hoping this time it goes through. And with every attempt I get more nervous, because whatever we're trying, is not working. It's not as simple as putting your fingertips on the glass- you have to do it at the right angle, at the right speed, pressing at the right moment with the right amount of force. With rolling I had people working the machine turning my fingers for me, side to side, because I couldn't do it. But that's not all. Not only do your images for every finger have to match with each other, but they also need to fit with the capture of all five fingers at once. If we don't get it, we have to do it again. And again. A few times it felt like we've scanned all the fingers, but then it didn't go with the image of the entire hand. More grabbing, more pulling my hand, more moistening my fingerprints for a better read. Thankfully, despite my spasticity I can separate my fingers. But that doesn't help if they get tense I just can't control it. I'd assume people were usually in and out there in ten, maybe fifteen minutes. With me, it was usually an hour, an hour and a half. And it was something that was getting me worked up even as I was going there. Not only did I have to go get my fingerprints captured for USCIS with every immigrant petition I filed all the way to Jacksonville. Once I had to go back because although we thought we got it right- the system thought my prints were unreadable. The same thing happened with the Florida Bar. And imagine this- with immigration it's their day job, that's all they do. With the Florida Bar the scanner machine was typically in the back of a gas station or in one case, a furniture store. This is something they did for a quick and easy way to supplement their income. Little did they know, but they bared with me for as long as it was needed to get the job done.Same thing happened when I took the exam- they were fingerprinting me, this time in ink, but when it wouldn't produce a proper print, we'd have to do it over. And you tell yourself: just relax your hand, just relax your darn hand, but there is nothing you really can do to turn off your mind and have them do with your hand what they will
Wednesday, February 20, 2013
"F... you, I hope you're disabled forever" said one of the two girls who decided to lounge in the wheelchair accessible cabin after I told them that I was waiting for a really long time and this was the only bathroom at the restaurant I could access.Poor thing, she didn't know, that I have no perspectives at all to ever not be in a wheelchair and that I'm fine with it, as long as there were places and bathrooms I could use. And here I was- about to write off Tuesday night as mostly uneventful. Drinks with a few friends I bumped into at the bar, strangers telling me of their latest great idea that will revolutionize the world and everybody so eager to get me a beverage. It's Tuesday night at The Top- a lot of familiar faces and a bit of a weekly tradition for me. And a fun night, for the most part. People blocking the wheelchair accessible bathroom is not a new thing. And I'm trying to be considerate. After all, we've all had a couple of drinks. I usually say: "Look, I've been waiting for a long time, this is the only place I can go and the regular men's/ladies' room has been free for a while, if I could go there I would". Most of the time people get embarrassed. Some just frankly say it was free, so I got in. But never before had I gotten as much attitude from someone as I did Tuesday night. I always try to use the restroom before I head home, otherwise I may be in trouble. I don't drive, I don't take the bus or walk. I wheel home. That is a whole upper body workout. As you move around, your muscles get tense and you feel a lot of pressure on your bladder. Quite frankly at that point you hope you make it home in time. I always try to visit the restroom before I leave. I do it way before the establishment closes, because with all the transferring from and to my wheelchair I never know how much time I may need and I hate being rushed. Yet, I was sitting in front of the cabin for a while now, waiting for the person inside it to leave. I've heard voices. I figured she was on her cell phone, clueless that a person was waiting outside. Laughing, screaming- they made me wait quite a while. Sounded like a party. "A private textroom"- as the doorman often calls it. Finally the door opened, but instead of one girl I saw two. Young, bleached blonde women if I had to guess, college age, possibly in some sorority. It was clear that with their drinks and their laughs they were not in need of a toilet at all, they just wanted some privacy. "For future reference- just use the regular ladies' room". "This is the ladies room" one of them said. "No it's not- it's across the hall"- I explained. "You know, I'm disabled too- one of them continued- I have a plaque and everything" "Me and my father are the only ones in the WORLD who have this". Well, do you need grab bars?- I asked- because this is the only bathroom in the place that has them. ,"Yes I do"- she said, all the time standing straight and walking just fine. And even had she had any kind of condition at all, wheelchair accessible bathrooms are not like disability parking spaces. It's not about who needs it more or who is certified as with a disability. She has the option of using any toilet of her choice. I would if I could, but I'm not physically able to. I can't walk and I can't stand without something to lean on. It's not because I feel special for having a disability. She left me with her final remark and I guess she won't be bothered by her conduct at all. I doubt she will even remember. She walked on steadily towards the bar, an amazing task given all the alcohol she consumed. I was not able to use the restroom as the bar was closing. As I was leaving people were saying I should have had the last word, the last remark, something like, "I will always be in a wheelchair, but you will always be a...". Alcohol makes it hard to think on your feet. I was mostly amazed how vile and mean people get to excuse their own conduct. As I was on my way home I thought of a million good comebacks. But I'm glad I didn't say anything. A street musician who I always meet on the corner asked me as usual how my day was and I told him this story. "It's her mother"- he summed it up -"This was the best she could do, raising her daughter". And I couldn't help but smile.
Sunday, February 17, 2013
I guess we all get used to our disabilities at some point. We all end up learning how to work our bodies, our senses for our advantage, how ever limited in some respects we may be. This is the one life we are given, we better make the most of it. We get familiar with ourselves, we figure out what we can and can't do and how to do certain things differently. Every disability it seems, comes with a different limitation, and it almost feels like a trade off- some people are able to do one thing but can't do something else and many that I have spoken to get so for the lack of any better word- comfortable with what they have over time, they would not trade it for a different condition. I have Cerebral Palsy. This means that with my extent of my condition I have control over all of my body, I can use my legs and my arms but all of them are somehow affected. I can sit and I can move, but my posture isn't very good. I can ride around in my wheelchair, but I'm not as fast as I'd like to be. I grab things with my right hand, but it will never be as precise as my left one. I can use my legs to adjust myself, transfer or stand for a bit, but my knees are too spastic for me to walk. At the same time if I wan't to get out of my wheelchair and get on the carpet I can do it easily. Or get up on knees or crawl. If I feel like sitting on my couch if I so desire. And of course I have all my senses. At the same time I'm not as strong or as fast as people with some other disabilities that have to compensate by developing a really strong upper body (although mine really gotten stronger over the years). One of the questions that I usually get (among other less polite or intimate variants going in the same direction) is "Can you feel your legs" to which I sometimes I say: You just saw me move my foot, did you not? Sometimes I get "Is it painful" to which I say "No my legs are not in pain". I don't mind my disability. But doesn't mean I don't notice it or that it doesn't frequently get in the way. Yes, I suppose it's true that it's easier that I was born with it and it's all I know. But then, growing up in Poland where there were stairs, stairs and more stairs everywhere I was always aware of how limited I was and would always be. How there are people, places I'd never get to see unless somebody takes pity on me and carries me up somewhere struggling with my weight. Just because I was born with it, doesn't mean I don't see how some people react to individuals in wheelchairs, that I don't realize that I live in the world of body-abled people, who run and dance and do many other things I will never get to do, not really. Just because you are "born with it" doesn't mean there aren't times I don't feel different, that I don't feel like I don't belong. I'm happy with the limited mobility I have- a bit of everything, none of it really that good, you may say. I'm also blessed not to be in any major pain, at least for now. Do I wish I would sit more straight? Of course I do. But then I know there are people who could do with their bodies and brains as well. I remember how one of my school friends told me when we were kids: "I envy you, I wish I had your smarts". This was maybe 22 years ago and it made me think how we all struggle with something we have. To me studying came effortlessly most of the time and it felt obvious, something that just came to me. I guess it was like getting up and running to him, something he didn't even think of. And it makes me think even today, how we focus on what we don't have, how we dwell on what we are lacking, rather than applying what we do
Thursday, February 14, 2013
Isn't strange how you seem to be invested so much in your cause that it is all that people see? I bumped into a friend I have known for many years last night at a bar who was with a group of other people. I was not planning to be out that late, but after a brief conversation, I said- why not, to a suggestion that we should step into a bar. A few drinks later my friend told me that I was one of the few people they respected and admired as much. And I thought to myself: What an interesting choice of words. I didn't hear that I was fun or that they were happy to see me. Or that I was fun to be around. that I had a great smile, that I was a sharp dresser or even that they liked me. Yes, I'm a hard worker. During my years at the Klausner Foundation I was sleeping, eating, breathing Conductive Education. That's how much it mattered for me that people knew what it was.I needed to make it work.If I had to do it myself, I would. Every little blimp, email, offer and idea felt ground breaking to me almost as if I have fused with this concept into one. I will never make that mistake again, but I guess I brought it on myself. But sometimes you want to be seen as more than just a cause you stand behind. You are more than your disability and you have you're entire life's worth of experience to prove it. But sometimes you just get too excited, too involved to get a proper perspective. Have I scared everybody off? Is that all they will me know me as? I don't mind being an activist or what you may call it. I'm first and foremost a human being, not just a poster child, not a cause and not idea. As you get a proper balance in your life, as much you bored your friends in the past with this you want them to see that. You want them to like you, not to be impressed by you, when you're having a drink. And be appreciated just for being around. Changing the world can wait till morning
Wednesday, February 13, 2013
Last week I went to the local farmers market and I've decided to take a friend who never went to it with me. An elderly couple looked at my manpurse and then turned to him. "Is he with you"- they asked- "His money looks like it's about to fall out". They were not talking to me, they were talking over me. Like I wasn't even there or as if I were an object or a child. The odd thing was, I'm a few years older than my friend. But of course they didn't know that, they didn't know who we were and why we were there. My friend thought it was funny and to my surprise, I didn't care. A few years ago I would have gotten upset or have said something back, but I just rolled my eyes and rolled on to the next stand. I believe I said :"I'm fine, thank you for your concern". I could waste a lifetime getting upset over every single thing that happens to me. I can invest a lot of time and energy correcting every single person I meet. Or I can live my life. The thing is, I really don't feel better either way. If I blow off and point it out to them I make them feel bad. And then I get worked up over nothing. And I'm the angry one. The "unreasonable cripple". If I let it go, then I will never make an impact Often it's just not worth my nerves. Truth of the matter is, there will always be insensitive people. I'm sure I have been insensitive to others in some scenario I don't remember just last week. It's human to be imperfect. And I'm sure I lose out either way. In situations like these, people most likely don't remember interacting with me the next day, be it when they block the only wheelchair cabin, when they give me money, if they ask me if I'm lost while I'm next to a bus pole. Unless I say something mean or point their erred ways to them they just move on. It's no big thing. To them. Yet, I'm stuck with the aftermath. How should have I behaved? Did I do the right thing? If I'm not firm enough, people don't treat me seriously. Just the other day, I pointed out to my neighbors that they should not let their dogs run loose in the complex, because if something happens they can get sued. I should know, I'm an attorney. Also, they are in breach of their lease. Their reaction was that I'm threatening them. Truth be told, I'd gladly take a case like this and people, dog owners, don't really see what could happen and how they could be liable for something they can easily correct today. But I guess, given the two evils, I'd rather be the guy people stay clear of and are afraid of than dismiss. Being in a wheelchair I'm not that intimidating if I don't say anything and if I'm not firm enough, it just doesn't get through. But if I lose my cool I loose altogether. Let it go or be the crazy one... I'm much better at picking my battles, what I'm not yet that good at is figuring the right tone for every circumstance. So, that in the end I don't feel like I'm the one defeated.
Monday, February 11, 2013
Six and a half years ago I was at the crossroads again. I've graduated from my first American law program, I was fighting hard to get into the other. My classmates became attorneys and moved away in all directions. My neighbors were college kids, six, seven years my junior, and they were mostly involved in drinking and clubbing every night. Since I moved to America I was looking for people who would live up to my expectation of what a college town is like- deeply intellectual, well read and traveled, inspired and with many interests. But mostly I wanted to have a diverse group of friends since everybody around me seemed to have been doing the same thing. You can only learn if you open yourself up to what other people bring you I thought. With so many things in my life up in the air and me searching for my own purpose, direction and reason for why things are the way they are I decided to focus on my inner self and call it what you may- cultivate my spirit? I was raised Catholic and with my friend Katrina who was Catholic as well calling me from Orlando to tell me I should go to church, I decided to give it a try. Even my Jewish friends were pressuring me to go to some kind of temple for divine guidance. I don't quite remember how I got involved with this group. I know they lived in my apartment complex and I've known some of them from campus, and I'm not that hard to remember. They were trying to get me to go to a service with them and on few occasions I've agreed. They were nice kids, kind and more level headed than other people their age. I guess that's what made them so unique in my eyes. Between the fratboys and sorority girls, hipsters and emos and with sex and booze everywhere they felt like something different. They called themselves simply Christians and they had a campus in town with services tailored towards the youth. And I can't fault them for wanting a spiritual connection even if their way was not for me. I've noticed that a lot of students that attended their service had a troubled past. Some had violence problems, others dealt with drug addiction and few were in a cult. It seemed to me that they have replaced one form of reliance with another, with the group and the pastor regulating most if not all aspects of their lives. I never had a void like this to fill, so it never quite worked for me. And I have to say, I like the symbolism of Catholic rituals and the humbling feeling when I enter a cathedral. I wasn't going to join them, but it seemed like a good thing to have them pulled away from sex and drinking. Back then I thought, well at least they can focus their energy on something positive. But the experience wasn't exactly positive for all involved to begin with. A lot of those young people simply couldn't live up to the perfect image and dealt with a lot self loathing, guilt regret and shame. They felt like they were a disappointment because they were not able to rise above their imperfections. Like they were not applying themselves. Like they were not trying hard enough and they were failing. The group, the pastor and God. Those feelings were not something, I think, that naturally came to them. On the other hand, a very closed group, they seemed to not be interested in other people and perspectives at all. They were very quick to pass judgment. They never questioned anything or challenged themselves looking for answers. Cemented in what they felt the truth, right and wrong is, I remember one of my neighbors dealing with his own frustration punched a hole in the wall of his apartment. This simply didn't seem like a healthy thing to do. I didn't even reflect on those experiences until I've heard one of those young men came out as gay. I can't imagine what that experience might have been like considering that during one service I've heard that women should not shave their legs before a date to avoid temptation. That did it for me and I never came back. Are we not all looking for answers trying to figure ourselves out? How dare we pass judgement on other people? And that really got me thinking- just because you listen to Christian rock doesn't mean your open minded. Just because you talkk of love doesn't mean you love other people. Your perspective can be as narrow disguised as religion. Just because you think you know what's right for others doesn't mean it's right to tell them. To me, our true value shows not in what we say but how we are with others. What I find now striking, that perhaps I didn't before is how much these Church going kids and club kids were alike. Both focused on their little field, their limiting perspective, shutting away from what this city has to offer. Both lost. Both trying to fit in and connect to something
Friday, February 8, 2013
How did you get through it? Did you? - was my readers' response when I shared my high school experiences in a blog post a week. I want to make one point clear- my classmates were not mean or cruel, I wasn't bullied or made fun of. These years were just painfully uneventful. There's not a single event that I look back on with fondness, or any one person that I particularly missed. And the odd thing is, that between all the tests and extra work, stressing out about teachers and grades you don't really even notice that what tv and books advertised as the best years of my life, was not really that great until I half way done. The best thing about high school is that it's over before you know it And truthfully, I couldn't wait to move on. I anticipated college to be this new, big thing in my life. Adulthood, the at was both scary and exciting. Months of studying for the Matura high school final exams and law school entry exams were all leading up to this. 10 people per spot.10 people I had to beat. Hard work in exchange for a promise of a better life. And a new me. I was on track to become a lawyer. And getting an additional month of Summer break every year didn't feel like a bad bonus for joining the university ranks either. My history teacher had so little faith in me that she tried to discourage me from the path I chose. But I did it. And here I was- vindication and validation. It's odd how all I needed is to get to new surroundings and new people to feel like a new person myself. Law school in Poland was like a new beginning, a new opening if you will. The highschool micro-cosmos felt like it was all there was while I was in it and then it was behind me. All I needed was a change of perspective. I needed to get out. Before I started college, my parents sent me with a visit to my cousin in Las Vegas, my first time in America, as a reward. I came back tanned, rested, funny and eager to start. That first year I've met a lot of kind, exciting, highly intellectual people from all over Poland. We shared common interests. It was not like school where you only interacted with kids from your neighborhood mashed together only based on where they lived. It's true what they say. It gets better. And there are people who will like you for who you and respond to the person within you. That first year the world really seemed to be my oyster and sky was the limit. For two semesters we were assigned to fixed groups and I really grew to like those people. The parantransit van gave me freedom from my parents. Going to school by my myself felt like a huge accomplishment, a change that I craved. It didn't even matter that the city wasn't very wheelchair accessible. It felt I had five years to worry about that. If I was changing, I felt the whole world could change with me. A few years later, when I graduated the brutal reality came crashing in- I was one of the top students in my class, yet courts and firms were beyond my reach. But not then. Right after high school I felt I was growing into my personality. Driven, energetic, happy. After my freshman year I was approached about a scholarship in the Erasmus program. I was too scared to move abroad, I was only 19. I declined and it was never offered it again. With the new people I also didn't want to let go of the good thing I felt I had going. I was around people like me. I felt appreciated.
During my second year I've lost touch with many of my friends. We've all switched groups to create the ideal schedule. I've signed up for many electives and have taken up two foreign legal centre courses. I wanted to go to Cambridge. Many of my friends moonlighted as legal secretaries at law firms, often barely awake in class. Not the college experience you see on TV. During my second year I also started writing about the media market in Poland and discovered I was pretty good at it. Soon I had my own website. Somehow, that didn't seem like enough. But that's an entirely different story. I was out of high school and no matter where I went I was my own person.
Wednesday, February 6, 2013
When I was eleven, perhaps twelve, my mother would arrange play dates for me with other kids with my disability. She felt I needed yo have bonds with others "like me" whatever that meant. The problem was, that aside from being born prematurely, we've had very little in common. I was still in school, these children stayed at home. I read a lot, played computer games, watched TV, was immersed in pop culture, they did none of that. It was always very difficult for me to force myself to have a conversation with someone I have very little in common with. Cerebral Palsy alone is not enough to have a friendship. As a teenage boy I wanted to do what teenage boys did. Be around the cool kids. It took me years to understand, that to the girl from my apartment complex that rarely left her apartment perhaps I was the cool kid. When my parents insisted to take me to a regular public school, essentially carrying me up the stairs every week others followed. Many then given up and apparently some of those other kids ended up emotional and depressed. Imagine somebody wiggling a promise of a semi-normal life in front of front of you and then pulling it from under your feet because you're too big and to heavy. I was the only one of the kids with Cerebral Palsy that stayed and succeeded in a "normal" school. It was not only my smarts, it was my parents' will and the strength of their backs. As for other kids... We din't see each other much, a few times a year if that. I would always try to force some chit chat, not because I wanted to, but because it was expected of me. My mom then would tell me their parents felt I seemed to feel be better than their children. That really wasn't the case. I just didn't know how to relate to them. Perhaps on some subcutaneous level I was scared I'd end up like that- trapped in a top story apartment without a friend to visit, maybe this was what I feared my life would be if my parents gave up on me. But realistically, I was just a kid. I could play with the latest toy, my Game Boy or Atari, but not to have a discussion about life over tea. I was never mean, just never really into it. Now I feel I should have done something to make their life brighter. It is an accident, a lucky strike that I am were I am. But to be quite honest the whole rehabilitation system wasn't something that helped me to come to terms with my disability. For the most of my life Cerebral Palsy felt like my enemy, something I had to beat through hours and hours of Conductive Education. Then, I was told to relate somehow to other kids "like me". Then, my father told me, accusing me me of not being "ambitious" when he felt that I wasn't applying myself during my exercises, that I'll end up at home like those other kids, that I'll gain weight on nobody will visit me if I don't work harder. How can you have a coherent image of your disability, how can you come to terms with what it is, when on one hand you're told to rise above it and become "normal" with other kids used as examples to scare you while on the other you're told this is who you are, accept it. If I was confused about how to feel about Cerebral Palsy when I was ten or eleven I had a good reason to. But I don't think my mom was right. The odd thing was, when I was at the Peto Institute some of the other kids in my group where not only only my friends, but also my first crushes. At Warsaw University I jumped at the chance to work with other students in wheelchairs when I joined Rector's disability advisory board. But quite frankly, I don't think the emotional maturity to deal with those issues when I was a little boy. I wasn't perfect. Even today, when I choose friends I go for people fun, spontaneous, energetic. My dad is very good at having a conversation about anything with anyone no matter how he detests them, while those who know me well can easily tell that I'm bored or forcing myself into a stretched out conversation.
Monday, February 4, 2013
Friends often see me get involved in disability causes. And often it's something they choose to stand behind. They see there's a need to help, they feel they want to make a difference and sometimes they recognize there are things they can do. Often- it happens through my story- they have witnessed or heard about my struggles getting back to law school, landing my green card or how much my sacrificed carrying me to school every day. Sometimes they see an inaccessible building or a block off ramp and it gets them upset because they imagine you there. There's plenty of things to change in the world. Disability issues is just one thing. I admire passion and if I can put fire under you to get you to care about something- then great But I also think it may not be for everyone. You don't have to care about something just because I do and you care about me. You don't have to dive in, just because I'm in it for the long run. My perspective is different. While in no way I'm saying this is calling or that I have been chosen for this, it is my life. My perspective is different not only because it affects me, but also I understand it better. So many friends I have seen who got involved on a number of my disability project and then fallen off. They ended up feeling guilty because they couldn't give it their all. And I say, every little helps. And sometimes being aware and having the right kind of perspective is good enough. Don't feel bad you are not as involved as I am, but in a way I'm stuck in this. I will always be involved in the issues of disability in one way or another I will try to make it work. Consider my friend Josh. I've written about him before as the person who had the most influence on my life in America. He was the one who organized rallies on campus when the law school didn't want to take me back. It was through his connections that we uncover the big underlying issue of the Law School Admission Test administration refusing to accommodate students with disabilities at their discretion. He introduced me to James Klausner who gave my my first American job at his Cerebral Palsy foundation. Through all the things that he saw me deal with Josh decided to law school to change the world and help the oppressed For the longest time we were talking about practicing law together, building a model that will help and empower disabled students. And don't get me wrong, had we done this I believe with his passion and personality we would have been a great success. But a few months ago I told him: I don't think this is were your true passion lies. You really shouldn't do it for me or because you feel you owe me something. You have to find your own niche, the one thing that excites you the most. And I don't think it makes you a bad person if you can't change the world in every aspect and tackle all the things that are wrong. You can walk away from it easily. It's not that easy for me. I knew that he was trying to deal with too many many things at once, and he was staying on board out of an obligation he felt to me, but also because he is a genuinely considerate person. So he bowed out, but from what I'm hearing he's changing the world in some other ways. And I have new people standing behind me. Wouldn't be amazing to work with my good friend? Yes. But it would be much worse if I kept him from his mission in life. If he wasn't able to fully commit. People care about a lot of different things. Some care more about animals than other people. I have a friend who only donates to Cat Society and I think that's wonderful. I don't think one cause is more valid that another and true passion for whatever it is must always be admired and acknowledged. This is mine. Go find yours.
Friday, February 1, 2013
High school years for me were very uneventful. I don't think any of my classmates particularly liked me, I didn't bond with anyone in particular, I didn't have people coming to my house to "hang". Not to say that these were bad people, but we didn't necessarily click. I've had an awkward sense of humor and obviously I was trying too hard. I guess you could call me a wallflower and like so many kids who felt they didn't belong, I couldn't wait to graduate. To move to bigger and better things. Unlike many Western countries that allow students to pick their own curriculum and be exposed to a diverse group of people all our schedules were fixed and we would always be together. All through elementary school- one group of people and then in highschool- another. If you like them you like them- you'll grow even closer. If you don't, hard cheese- you're stuck together for all eternity (which is the rest of your school years) anyway. In elementary school it was easier. When I was young my mom would always find some intelligent way to interject between me and my friends. She made sure I was included and they wouldn't just run away from or go somewhere else and play. She knew how to interfere when some conflict was brewing up, she thought of fun things that I could do with my friends so I would never feel abandoned, if they started to drift away she'd jumped in. When I was six or seven she introduced me to my first group of friends and she knew how to steer a conversation when I was too shy. The thing is, my parents knew how to play down my disability. We all knew I was a little different but it was key that I wouldn't feel it too much or be reminded of it every day, not with my peers around. But then, it's easy to do with eight, nine ten year olds. It also helped that I had an older brother people respected and that we were the first ones in the area to have a computer, a CD player and later on we did get a dog. It also helped that my classmates weren't with few exceptions very much into sports or any physical activity at all and then, being in Budapest a lot I'd be missed When my mom attempted the same things in my first days of highschool- talk to some people introduce me, get some friendships started it didn't quite work like that. She picked people that appeared to her as most caring, reliable and stable, I found that a bit boring and was more drawn to the fun crowd. But then, they didn't care much for me. And those were the same people I'd see for the next five years, with very few venues to make friends outside of it. And here we were, stuck in our tracks for the reminder of highschool with friendships and cliques already forged. As I was the one who introduced some of my friends to the internet, people starting reappearing at my house, but nothing too serious. Quite frankly I was too stressed and over worked to even realize that I was a loner until about half way through it. And then it dawns on you how different you really are. When people get involved in school dances that you go to, but you end up selling tickets or just sitting there. When people go swimming or playing ball and you don't. More school trips and outings that you don't go to. Crushes and hormones and all those growing pains. But worse. Because you feel more isolated and nobody notices. And it's not as easy as having my mom step in and fix things anymore. One thing that got better- my parents didn't have to carry me up the stairs all the time. My classmates did between classes. In my wheelchair. But not because they liked me- out of of obligation. At first it was laughs and giggles and they were happy to do it. Then, they just did it. Those were also the years that I had to come to accept that I forever be in my wheelchair. Something we were trying to avoid, something all this rehabilitation was supposed to prevent. But there it was. The dreaded moment. Those were my mid-teen years. Graduation came not a day too soon. And I always remind the Conductors dealing with Cerebral Palsy kids : It's easier when you're ten. It's easier to deal with a ten year old. You can chase away dark thoughts, the future is limitless. You have them right before the first bump: puberty. Something I know I was very much alone in. A confusing time for everyone, so much harder if you have a disability when you realize- this is who you are going to be.