Waiting game.

It was something of a weekly ritual. Every Friday night I would wait for that familiar figure to appear in the doorway. Sometimes they were late. Did something happen? It's not that I feared they'd forget to come for me, but I didn't want to be like those kids who get left behind. Being able to get out of a rehabilitation facility if only for a weekend, when I was seven, eight, nine or ten felt exciting and important in ways I couldn't really explain. It didn't even matter if I disliked the facility I was in or not so much. When I parents came to claim me I felt like I wasn't like the other kids who practically live there, who don't see the outside world, whose parents rarely visit. Most of my memories of this nervous waiting come from my years spent at the Peto Institute in Budapest, but I've been in rehabilitation programs in Poland as well, where this waiting game was more of a daily thing. At first you waited for the exercises to be over. Is it mom or dad coming for me this week? What did they bring me? A new book? Some candy? Time passes, but that's OK. They're only 15 minutes late. It's normal. 20. 30. You see the other kids picked up, one by one. Sometimes you're the only one still waiting. And you don't want to be the one who gets stuck for the weekend. If the waiting takes too long you really start to worry. My parents would fly in from Poland every weekend during the periods when I stayed at the Institute overnight. Is something wrong? Did something happen to the plane? Here they are. The weekend can begin. I have to say I really needed to get away for those two days to get my energy back and I really felt bad for the kids no one  ever came for. Getting me back to the Institute was always a challenge, but to me it was worth it. At first we used public transportation. My mom walked mu up the steps of the bus, put me in a sit and then went back for my stroller. Sometimes the driver would close the door on her, so later on she opted for taking a taxi. The problem with that was the drivers rarely cared to give her change and she didn't speak Hungarian, so she later made sure she wouldn't give them any high bills and she had a proper amount with the tip on her. I taught her some basic words in Hungarian, so she'd know to tell the driver to drive up to the building. Yes, the Monday mornings were wild. When I was a weekly boarder at the rehabilitation ward at the Child Health Center in Warsaw my dad would just drop me off there again on Sunday nights. Less stress, less hassle. But to me those extra few hours between Sunday night and Monday morning made a world of difference. You may not think much of it, but even sleeping with my family near by made me feel like I was not just a patient at an institution, but someone who has a family to go back to, someone who has a life. And not a person who's left behind, stuck and forgotten at a rehabilitation facility regardless of how nice staff at some of these places may have been. I've seen those other kids, reaching out for human contact with conductors becoming substitute mothers in a way. It might sound awful, but I was glad this wasn't me. That as late as the may had been, my parents eventually came.

No smoking

A fun fact about me- my parents lured me to Budapest with tales of candy cigarettes and swimming pools with an artificial waves. They always felt they needed a selling point to get me to do a lot of things when I was little (and often lied to to do so). As a child apparently I liked the high class aspect of holding a cigarette like they did in old movies and the apparent sophistication of blowing smoke. So I'd just play pretend, like a lot of kids my age. I never smoked. I never had a single cigarette in my life. I once posed with a lit cigar in my mouth and that's about the only experience I ever had. It's funny how I ended up hating both of those things I was excited for as a seven year old- swimming and smoking. I find cigarettes to be the most disgusting habit I can think of. My dad apparently got started when he was 16. He was never allowed to do it the house and my parents fought over it frequently. He was either forced out of the apartment and into the balcony. And still he was able to bring in some of that nauseating smell back with him. My favorite aunt always smoked indoors and while I loved to visit, her apartment had always smelled like an ashtray. The curtains,  the furniture, everything felt like it was soaked in tobacco. I've known people who were able to pull all their teeth out by hand. I've had teachers who were chain smokers with grey complexion and prune like skin. What felt sophisticated when I was seven now feels extremely cheap. Not that it's a cheap habit to begin with. One of my neighbors is a chainsmoker. Not that I will ever understand what it today's day and age gets people started on this in the first place, especially if they're 20. During a fifteen minute conversation he has two, maybe three cigarettes. Take his pack away for a minute and he will plead with you like Gollum from Tolkien novels. It's not a habit he's proud of, but apparently has gone to great lengths to hide it from his parents.  I may have said a couple of times that I would tell them in one way or another if he doesn't quit and reduce his consumption. Initially I got a lot of appeals to my humane side not to, but never a firm decision to just drop it. If you thini what you're is a good thing and you're proud of it - be honest and don't hide it from your family. I have no sympathy for smokers. The second hand smoke, the smell, how it effects everyone else to a greater degree than it does you.... I think I may have had greater compassion for him if he was actually doing drugs.  Cigarettes is not a habit he can afford on his salary anyway. It takes a great toll on his fitness and strength, how quickly he gets tired and loses his breath, more than he realizes. I know it's none of my business. But then I'm sure one day he'll thank me. For saving his life. Now we're far from that point. He makes sure I know everyday how awful the patches are to wear and how the e-cigarette doesn't do anything. My aunt was able to kick her habit and after spending most of her adult life in clouds of gray smoke she says she never looks back. For her, the patches did it. She claims she wakes up in the morning happier and more energized. And that's the surprise. I was certain growing up and she and my father would be the last two people on Earth putting their feet down defending their right to smoke. As for my dad, you'd think that someone with heart problems would know better. He's a body in progress, I guess...

Oranges

Christmas time made me think of the holidays of yesteryear. Not only the times when my dad would excuse himself from the table only  to come back dressed as Santa Claus when I was little (although I knew back then that both incarnations wore the same shoes and I've had seen his hat before in our closet) but also the pre-Christmas  events all the "special needs"  children would get invited to. If I remember correctly they were put together by the public rehabilitation facility in the area. Kids with Cerebral Palsy of all ages gathered in a room with a tree and a man dressed in a Santa suit. We were all sent home with a plastic bag filled with candy and exotic fruit, tied with elastic bands. I didn't mind these events so much when I was little, although I did feel uncomfortable. I didn't know any of those other kids and even then it felt strange that we were all put together not because of who we were, but because we shared a condition. My parents didn't see a problem- I went, I saw and I got a goodie bag out of it. Free candy. But these invitations kept coming  as I entered my teens. At that point I felt it was extremely patronizing. They flt they needed to put it together for us because that was all they saw us as. I was being reduced to my disability. My place was with "others like me". My classmates didn't experience things like that, because they were not seen as "special". I went and excelled at a regular school after all. That's the thing- when I went to those events for CP parents and children what I saw everywhere was pity. The thought behind it as I read it was - they don't socialize, let's throw them a party. And it didn't matter that I aged, that I was excelling in high school, the institutions, the government still saw me as "special". Polish term describing kids like me was "dziecko specialnej troski" meaning "a child of special care". To me that label implied a number of things- that I would always be the one people feel sorry for. Who would be the provider of that "special care"? A person? An institution? By mere designation I was different than my fully abled friends. Not someone who's expected to succeed on their own, but a person that the state would at some point perhaps enter and take care of. We were given candy because in their eyes our lives were so darn difficult. They wanted to pat us on the head. Oranges were difficult to get in the late 80's/early 90's. To me the bag was a symbol, a representation if you will of how they evaluated who I was. It might as well have been filled with cards that said "I feel bad for you" and "You're so brave". It wasn't happy candy. In many ways those were insults dipped in chocolate and these are hard to swallow.

Newsworthy

It happened a few times when I was involved with the Klausner Foundation. A journalist, an intern, a student would get excited after he or she heard about all the work we were doing with our kids with Cerebral Palsy and wanted to do a story about it. Interviewed some people, did some research, heard inspiring stories of great dedication from the parents. Maybe recorded a sentence or two, perhaps videotaped some material for broadcast. Got attached or inspired by the children as they faced and rose above the limitation of their body. But then, after all the time, all the work and all the meaningful experience they'd hear that there was no story. Behind closed doors we touched people's lives, success stories, even the tiniest ones happened everyday. But to the outside world this wasn't newsworthy. "Business as usual" isn't news. That was one of the things that led to the school's demise. We weren't doing anything new or different for anyone to report on. We did good work, but good work isn't worth a story. There isn't an angle. Nothing is developing, nothing new is going on. A week ago a student approached me to do an interview with me for a local affiliate of PBS. She wanted to know about me. She wanted to know about my new foundation. Yes, we still hope to start putting the accessibility application together, but it's not happening tomorrow. We've struggled getting people interested in our entity long enough to help move our projects along. I could tell her plenty about how much of a revolving door this experience has been for us and how hard it is to put anything together with no to limited resources. And if we don't get some exposure, this is unlikely to change. I saw the passion, the excitement in her eyes as we were evaluating how wheelchair accessible the city is over a cup of coffee. She wanted to be an instrument of change. Yes, do her assignment and get a class credit, but still do something that makes a difference. But without something current, something different, something ongoing this isn't news. It might make a nice documentary. Or a feature. Interview or even work as a starting point for an opinion piece. But one thing describing reality as it is and has been for a while is not is news. And when I spoke to her on the phone today, I knew what the issue was before she even told me. She was upset and disappointed. She did a darn good job on that piece, felt a personal connection to it and wanted to make it her own. But it's on hold. Because at its current state, it's not newsworthy. And it's sounded exactly like all those other times when a journalist, a student or an intern wanted to do something good only to get shot down.

The expectation

"I'm afraid I'm gonna be stuck here for the next  10 years". That's a sentiment you'd expect to be voiced by a jaded old man like me, not my 23- year old neighbor. He's barely out of college, has a job in the profession he loves and chose for himself, yet he's already worried about where he is and where he'll end up. "Give yourself time before you decide you're a failure for not having conquered the world. At least until you're 25"- I said laughing. The fact is he has a job. And unlike many people his age I've met  it's one that is actually related to what he went to school for. At least he doesn't have to wait for his next big break waiting tables and serving drinks. At least on paper what he does is impressive. Perhaps it's not ideal, but was he expecting to run a Fortune 500 company by the time he's 30?  Without a doubt it will open many doors later in life, but for now, it has to be enough. At first his fears felt silly for me, mostly because his age. I'm much older than he is, but I share a lot of the same concerns. How do I not get stuck in a small town for the rest of my life, should I be here or elsewhere, what is my next big step? I fear for the future, the type of career I want to have, live I want to live, places I'll get to go to (or not) as much as the next guy. What I would give for that little bit of certainty and stability and some reassurance that things work out in the end. But then it got me to think about it some more. Where does this expectation that you need to be at a certain point in your life by certain age or otherwise you're already behind comes from? What is this pressure that we put on ourselves to be successful, otherwise we feel like failures? It feels to me American kids struggle with it from college if not earlier. Your first job ideally must be the dream one that will set you up for the rest of your life. Why can't you just be happy?  I have a lot of respect for those of my law school friends who took a long second look at their careers and said: This is not for me. Not because I'm not good at it, but because it doesn't make me happy. I've written about it before: One of my classmates is a DJ, another a comedian and a third developed her own brand of dairy free cashew cheese spread she sells at the local farmer's market. There's no one set model for success, there's no one single thing that makes everyone happy. TV shows and movies of the 80's and 90's were forcing one model quite strongly: Study hard, land a dream job, have a career right out of the box behind a desk for years to come. It doesn't work like that for a lot of people. And even if it does, there's no guarantee that at the end of the day you'll be happy. As I'm leaning towards the idea that I should most likely join a law firm and bury myself in cases in research- not that they trip over their feet to hire me anyway- I come to one conclusion. Perhaps happiness is overrated. Maybe facing obstacles and struggles is what keeps us on our feet. Maybe being challenged in life is what gives it meaning. Maybe questioning, reexamining, reevaluating who we are and where we are is just a part of the human  condition. No matter what I do I might never feel different. And wouldn't it be boring if your life was served to you on a silver platter/ If on the day you graduated you got your ideal job, your dream house and dream routine? What would be next for you? How would you appreciate what you have, what would you've learnt? I sometimes think that what makes us who we are is all that we fight, face and rebel against...

Power through it: Welcome to my life

On Tuesday, WUFT (a local PBS affiliate) was interviewing me for a story about my foundation. Later that day, the opposing attorney in one of the cases I was handling, after telling me in the week before that he would let me know told me we would not be rescheduling some hearing we had set on Wednesday. On Tuesday night I find out that the next morning I'm in court, in full armor, in front of a judge. Dressing up, and wheeling myself to a courthouse I have never  been before, making sure I know where it is and that I get there on time is to me always just about the most stressful art of the job. But at end of the day, I'm an attorney- just like everybody else, wheelchair or no wheelchair, no excuses. This is what I do. I decided to get up before six just to make sure I had few hours to spend just in case of some emergency. I was so afraid I'd oversleep that I barely slept that night. What can I say, I'm still pretty new to this. The one thing I noticed is that the more I got to do it, the better at it I was. I was amazed to see that when I was speaking I didn't feel much stress at all, I was clear and confident and it was actually a bit of a fun. Turns out, meeting a judge I have never seen before and finding the right room on the correct floor was the only part I was nervous about. And then I go in and I do my job. I'm tired but I tell myself, I can power through it. You win or you lose, it doesn't really matter than much, all that does is that I advocate my position strongly, be attentive to the judge and the other lawyer in the room, say and do what I'm supposed to. And then it's over. I remember  I have a meeting with a software developer in the afternoon. I'm switching back into my nonprofit work gear. We are supposed to find new ways to find my foundation. The meeting's at 4.  I think I'm out of the court by 12. After I'm done updating all my clients on my phone, another hour or two goes by. I don't really have time to take a nap. I barely have time to go home and change out my shirt. Getting out of my suit entirely requires getting out of my chair and I knew there was no time for that. The 4 o'clock meeting was with someone I've been trying to schedule a meeting with for about a month. But that's OK, I can order a raspberry white mocha and you guessed it- power through it. When I get home after, although the adrenaline's gone and I haven't slept much in the last 36 hours, I can't really do more than a few hours of nap time. Then I think, I should go out. My friends are grabbing a drink somewhere, I'm done, I'm free, it's been a while since I got to do something fun. I'm not sure if I really want to or is it something I say to prove to myself that I'm not that old, that I can still keep up. As I think that I can probably "power through it".- a funny thing happens. The power actually goes down in all of downtown Gainesville. No places are open and nothing to prove, only source of light from cars occasionally passing by my window. For an hour if not a little longer all of life feels suspended. What is the universe trying to tell me? I call a friend so we can see how the city is handling itself in the dark. As we walk the streets we decide it's too rainy and cold to be out anyway.  

Why do I always need to be brave?

Yesterday, Polish  disability magazine "Integracja" published an interview with me on their website. I wanted for it to be mostly about the Munich conference where I was ask to deliver keynotes later that week, but as always, we ended talking about me and my story. What drove me to America. Our conversation went on for two hours. My story, my life choices, that I would never force on anyone. There's currently one comment under that text that uses profanity and attacks me. In a nutshell it says: "He [is saying silly things]. I have been in a wheelchair for 18 years, and I work-- Poland is for brave and motivated people". As if moving far from home, far from my family without any support wasn't brave enough. I've done the "wheelchair in Poland" bit for twenty five years. I think that's plenty. What he may also not understand is that I left the homeland  ten years ago and quite possibly the country I know and the country he knows are probably two different places. Why do I always have to be the brave one? Why am I expected to just settle for one life or another simply because I was born somewhere. Why do I always need to be on the forefront of disability inclusion or forging paths for others like me? Why should I simply accept reality, limited mobility, places I can't get to, because that's life? I'm not planning to be a martyr or a saint. I just want to live my life and be happy. I don't feel the need to explain myself to anyone. And quite frankly I didn't even know how limited I had been all these years before I moved somewhere else. My parents did the pioneering bit: elementary school where I wasn't wanted, high school where although I was- still forced others to carry me up two floors to my classroom and university, where although the paratransit bus made me more mobile I still depended on my parents to a lesser degree. I think I paid my dues. Don't tell me how to live my life, I like it the way it is. Thank you. Telling me what I should be doing is not only offensive, but assumes plenty about my mobility level and disability. Back home we call it "Polish hell"- the odd desire to pick on someone and bring them down after they get some degree of happiness. What I don't get is why it must be a discussion about me, my morals and character and not the surroundings I felt chased away from? We don't all feel the same. We don't hurt the same and tolerate the same things. Why can't people just be happy that I found a place that feels a little bit more like mine. Why is someone so offended that where I am is better for me than where I was before that they have to go vent on the Internet? Be and let be. Let me tell you something. There are no prizes in life for being that kind of brave. I could have sustained but I wanted to thrive. Does that make me a bad person?