It happened again- I pocket dialed my friend's number at two o'clock in the morning while going home. I was greeting and exchanging pleasantries with people I knew along the way and I didn't even realize that I recorded a 2 minute message on his voicemail. Just to be on the safe side, although suspecting that my phone is stuck somewhere in the bag that hangs from my neck between my keys and my wallet he texted me to check that I was OK. It happened a few times before. Once it led to me discussing a job offer the next day. But the problem is, it's embarrassing for me and annoying to the person on the other end. As I move around in my wheelchair, I keep my phone in the front pocket of my manpurse and I set it against my waist and stomach. As I move or do something in front of me, things may shift a bit. Apparently my Blackberry screen is very sensitive. I often find it running applications, or typing gibberish in a message when I pull it out. But mostly it just pops up a contact, with my luck often a random person I have not spoken in years or have a particular desire to. Yes, I could lock the screen entirely, but then it doesn't even light up so I can check the time as I roll the street and it's not comfortable if somebody calls me. I guess nobody thought of putting in a feature that will only block the dialpad. Not on my phone anyway. And it made me think of phones designed to fit the often unique needs of people with disabilities. I'm not in golden years. I don't need big buttons, visible letters and simple functions. I don't need a telephone just for calling. I'm on the internet a lot and I will freely admit that Facebook is now my universe. I love gadgets and like having the hot new thing if I can afford it. I'm also a dedicated Blackberry fan, so I really haven't seen anything I wanted to update to in quite some time. But think about this. I have full use of only my left hand. The other one is too spastic for me to type and select. I need a phone that I can operate with my thumb as I hold it in my palm. As the phones get bigger and wider it's harder to do. And with sensitive screens I'm always running a risk of selecting the wrong thing. I really need to be able to pull it out, throw it back and not worry it called UF's Dean of Student Office while I tell my friend how many drinks I had or discuss an afterparty. Now I got my screen locked with PIN, meaning every time I check my inbox I need to put it in. Hardly a good solution. And with every new phone they seem to fit my palm worse and worse. Blackberry had this amazing technology once, called SureType, but it didn't catch on. There was a spring under the screen of the failed Storm series models and you needed to physically push the screen in, as if you were pressing a button to make any selection. I guess people didn't like it. The operating system was extremely buggy and the screen would easily break, but at least I could use it with one hand without any struggle. Yes, durability. With my disability I have dropped my phones plenty of time. Sometimes it just felt out of my bag and I didn't see it or I didn't catch it in time. Often it hit my metal footrest before falling on the ground. And yes- battery- I don't drive, so I can't simply go home with easy to recharge it. Often when I leave it's for the entire day. My recently replaced Blackberry Torch it seems I need to charge every 14 hours. Also - as far as charging is concerned a find the small USB ports very tricky. To find it, to fit the connector in properly, it's a tiny element to deal with. I can only imagine what people with more severe manual disability go through. And the frequent pulling in and out loosen the port a lot. Yes, I use internet on it, GPS and location services, because... I need them. Any phones like that out there? A phone I can occasionally drop, not thinking there goes my $50 deductible, that will not call my friend without me knowing, that I can work with only one hand and charge every two days? You hear it Blackberry, Samsung, Apple, Nokia, HTC, Motorola?
Thursday, June 27, 2013
Monday, June 24, 2013
Lie to Me
When I was six I was scheduled for a surgery on both of my hips that would have my in a cast from a waist down and away from home for many weeks. My family was not allowed to visit except for a weekly "Visitation Day" that I believe fell on a Sunday. Apparently, my parents were planning it for a really long time, with a quick procedure to have my tonsils removed being a requirement for the big surgeries. But nobody ever told me. Some of the most traumatic experiences of my childhood including waking up alone in the dark thirsty screaming for a drop of water, having my spastic hand tied to the railing and being told to urinate on myself happened in that hospital, yet nobody bothered to level with me and explain what was going on. I was told, I was only going to be there a few days, with my parents there every step of the way. I guess my mother felt that she can avoid my getting teary and hysterical, but simply not telling me the truth. Perhaps she hoped that kids are resilient and whatever I was about to experience I would quickly move on from and be done with. Maybe she didn't want to prolong the fear, the stress and the trauma of something that in her mind she decided needed to happen. As a result I was left with nightmares for decades to come and an uneasy feeling that my parents are not being frank with me for the rest of my childhood. When I was even younger I was getting some kind of injections that was the approach everyone used with Cerebral Palsy, Thymus gland extract I believe. Perhaps it was because I was too young, but I don't remember anybody ever explaining what it was or why it was essential I got them. Not even in kids terms, like "It can help you walk" or "It can make you better". Things like that were never discussed with me. Period. Instead my mother preferred to build a complex charade in which she would by a collectible toy and give to the nurse to give to me. I even remember how she and my brother staged reading about it to me from a newspaper. Strangely, at the age five or six, the article about clinics giving toys for injections made perfect sense. It might have made the trips a little more bearable and me a little more braver, but it does undermine the relationship I had with my parents a bit when I go back to reflect on my childhood. And it was part of a bigger problem whenever the issue of my rehabilitation came up. This institute, this therapy, that hospital. I was never made part of the decision process. I was either not told, not asked or tricked in one way or the other. Perhaps it helped avoiding tantrums, but it gave me trust issues for years to come.
The decisions about me were made not only without me present but also without me knowing how and when and why. I was the "child" that everybody talked about but never talked to. And it's an awful feeling. Like you're not only not in control over your life in any way, but you don't even get a say.I was rarely informed. And I have to say- there was no discussion about my mother about anything she decided on when I was growing up- be it bed time or where I'd be sent off for the summer. How difficult would it have been to talk to me about it? Perhaps I'd disagree. Maybe cry a little. But at least I'd be recognized as a person - which through all those years I was emerging as. Maybe I'd understand if someone bothered to reason with me, acknowledge my feelings. That my opinions are valid. I went on to say numerous times that my parents have sacrificed a lot for me and that there was nothing that they would not do. My mom has always been a great supporter. Yet I grew up with a feeling that there was always something going on behind my back I didn't know. That what I had to say didn't really matter. That I was just a kid. When I came to Budapest for the first time I was expecting a trick. On that first day I was looking for an operating room which to my joy I didn't find. I love my parents. But how they chose to keep me out of the loop about all those matter I thought I'd understand when I'm older, yet I never did. I think it's much worse when you're stuck in a situation you don't understand because nobody took their time to tell you.
Friday, June 21, 2013
Chant my name.
Over the last year or so Saturday became a regular work day for me. I catch up on projects I'm behind on, do laundry, answer emails I missed, maybe go through the recordings on my DVR, but I never go out anymore. And I don't wander through the city looking for adventures. All through law school Saturday was the one day I looked forward to. The places I would go to, the people I'd meet. The music, dancing, the fun. There was something about Gainesville establishments four, five years ago that I don't get from all those new places that opened since. You could breathe in the atmosphere and let your hair down. Perhaps it's how much older I've gotten. Maybe it's how Gainesville felt like my town, with my hangouts and faces I liked. Maybe it's simply how these days I go to the same venues and to the same tired old places, with the same people by my side. Last Saturday I decided to go out. By myself. I used to really enjoy it. Get into a few of those bars and pubs and not even drink - but just to get a feel for the crowd. I made four stops just walking around. Market Street, one of my favorite places reopened as The Library For a minute, with the folk band playing it felt like old times. But that feeling was short lived. The bartender thought that I was in the way in my wheelchair, so after being told to position myself in the corner to be out of it, I decided to leave. I visited friends working at a cafe catering to hipsters and although they tried hard to include me- getting the lift to take me to the second floor I couldn't find my place. Yet, for a few moments it was different and fun.
Then I ended up at the local Piano Bar. One of the musicians noticed me in the crowd, called my name and asked me to raise my hand. Then he introduced me as his attorney. I didn't really help him with anything- I never took him on as a client, he only asked me to explain what a particular procedure looks like. I was happy to discuss it in an abstract. Not everything really requires an attorney to get involved anyway. He then continued to talk about whatever happened to him on the microphone with no way for me to stop him. Thanking me time and again, he raised the glass and urged the crowd to look me up and hire me as an attorney. They were cheering my name and asking for my business cards, which I was freshly out of. I was not expecting to be in the spotlight and I didn't come prepared. I was planning for a slow night. But whatever I did and said to put his mind at ease gave him enough of a confidence and knowledge to face what he was going through alone. A nice intermission - being called out by a man on the stage gave me a good feeling that I did something meaningful. Something that again mattered to someone. And that I was fitting in... And again it made me think about how being kind, considerate, firm and competent gets me respect and gratitude. Perhaps I do belong here, maybe I can forge my path and find my spot. Whenever I think I'm too old to be in Gainesville, that I overstayed my welcome I'll think of moments like this to remind me that what I do and where I do it is not a waste of time. Where else would I find those crazy, energetic, loving people that chanted my name like I was some kind of a rockstar?
Wednesday, June 19, 2013
I never wanted to write a book about myself. I don't think I'm that interesting, I don't think I'm worthy. Perhaps one day when I'll accomplish something extraordinary I'll earn a right to write and publish my memoirs. Don't discount me yet, I'm a body of progress. Yes, I have a story- but so does everybody else. Each of our lives is a fascinating journey. No one's is better than the others. Yet, everyone these days seems to be writing a book. Some people even write books about their experiences with books written by other people. I remember reading about a man who followed every advice from Oprah Winfrey's guide to a better life and then published a volume of his own. Recently I watched a segment about a woman who followed Martha Stewart's tips for a year and then decided it's interesting enough to share it with an audience. Yes, I could write a book about how my parents fought hard, against the communist system to make me better. Or about what it's like to have this disability and be in a wheelchair all day. But then, I have long struggled to have Cerebral Palsy not be the one thing that defines me. If I'm ever worthy of a book, it will be because of what I accomplish, not because of who and what I am. I see a growing trend among people with disabilities to sit down and publish their stories- printed books, e-books, you name it. Everybody is writing something, but just because you have been through something it doesn't mean it needs to end up on coffee tables. I don't think I'm special, I'm just living my life. I don't think I'm unique- I have Cerebral Palsy and I think I'm making the best out of a situation I didn't choose for myself. I think in general people write too much and don't read enough. And then- they don't simply live enough. Live for themselves, rather than looking for a crazy new literature ideas.
Yet, when Andrew Sutton asked me about extracting some of my blogposts for a book about Conductive Education, my years in Budapest and the aftermath- I agreed. I will not be writing a new book to boost my ego. This will be a collection of my musings on rehabilitation, growing up with Cerebral Palsy and what I remember from my childhood- things I have already written. He sees value in bringing it to a larger audience- while I wouldn't think of it myself. As I go back and forth on my blog between my childhood and adulthood and how they're connected, they have selected about a quarter, a third of my writings for the publication through Conductive Education Press in the UK. My posts were never a journal- I jump through time, themes and concepts often within a single text and I'm not sure how they will be able to put it together to have a coherent narrative or a flow. My blog is never simply about one thing or another. Sometimes I write about things that don't go well with anything else. One day it's about my childhood. The other - about something that happened on the street, the statement I'm making, the idea that I got on a walk or the coffee maker that I bought. Yet, through my years of rehabilitation, what it was then, what means now and I have reflected on it I've gained a perspective that perhaps parents of children with Cerebral Palsy can find useful. Because nobody ever thinks about what it's like to be the child. I also thought about to what extent can you separate those aspects of my story from everything else. Would you still have an undistorted picture without all the context that makes me who I am? Will people understand me and can it be a compelling read? The Conductive Education Press will provide only slight editing to the material. I'm a bit curious how one can make it work. Currently at 40 thousand words it's expected to include pictures and other artifacts from my life. It's not a biography. Just a collection of pieces of mind, memories, opinions at the time they were written. Some concepts I've revisited and restated when I wanted to make sure some ideas came across properly. My first proper book. It's expected to come out later this year around the time of the Conductive Education World Congress. James Klausner, my former boss, an old friend has agreed to write a preface. I'd have to write the introduction. All I'm missing now- is a title.My readers who have been with me for the last two years- do you have any suggestions as to what the title should be?
Sunday, June 16, 2013
Walkin' on sticks
It was Thursday night. I was having dinner with a friend at a local trendy restaurant, The Top, which is a bit of a weekly tradition for us, when I noticed a girl at the door, walking with sticks, wobbling a bit from side to side. She was about to leave. My friend struggled with whether or not to open and hold the door for her, while I couldn't get over the fact how much she reminded me of myself when I had sticks just like that. It wasn't the most graceful way to walk, but I was glad to be moving forward. At least she wasn't wearing leg braces, which I guess has to give more of an ease and speed. I did. Mine were made of metal and straps and locked my knees in a straight position. My legs were heavy and with every step I had to transfer my body weight from step to step, drawing the movement from the hips. The amount of work you needed to get me in those things every day was extraordinary. It wasn't quick and easy. My parents hoped to have me in them all the time, that's why after some time we got a model you can theoretically sit it, while you eat, study and rest waiting to walk again. But sitting in it was uncomfortable as the metal rods screwed into my shoes brushed against my feet and they were heavy. As years passed, the spasticity in my legs grew you needed more and more strength to lock the mechanism with my legs straight. It was something you needed to brace yourself for. By the time we were fourteen there was pain, screaming, sweats, it looked like I was going into labor and you needed more and more people to make it work. As years went by it also became more scary. I became more aware of the fact that I'm standing tall on braces, with all this added metal weight struggling for balance. And how easy it is to fall. And I did a few times. Once - backwards, which is impossible to recover from and get yourself back into position. Nothing happened but I did bruise my tailbone and from that point on I was too afraid to walk around without assistance. I'd start to shake as soon as my mom walked away. Many times before that my stick would just get away from me, because the rubber tips of sticks would slip on polished surfaces and worn out carpets. For balance I would have the sticks at an angle, always away from my body pretty far from me, pretty much like the girl at the bar. At the Peto Institute they taught me to use the sticks with a bit of an ease an finesse. I was able to lift one of them up, do things like press the elevator button and I was even starting to learn to lean on one stick. Still not much you can do if I was falling backwards, because the braces made me feel like a giant statute. At some point it becomes automatic, you stop paying attention. I would go through the list of the things in my head of what I want to do, imagine great adventures, all to the rhytm of stick, stick, left leg, right leg. It would even sing, much to my neighbor's dismay. One lady, whose window I'd pass every morning while walking in our Budapest neighborhood gave me a chocolate bar to keep me quiet.
Braces....It was never practical for me to wear them, because I could never get them on without assistance and it would never be safe to try to get out on town walking in them. It was exhausting and I was much slower than I could ever be in a wheelchair. I was never quite sure what the end game was. I guess to help me develop balance, because it would never get me independent. At the Peto Institute I'd be in braces for a lot of the sessions in the day. At home, my mom would make me do ten rounds around the apartment every day. At the Warsaw's Children's Health Center Hospital, they tried to get me to bring my sticks closer. The smaller angle would probably give me more safety, allow for a better body weight distribution and help avoid incidents with slippery floors. For some reason I didn't feel secure. Seeing that girl Thursday night triggered some feelings and memories from Budapest. Should have stayed the course and be in those braces? But how? Would it have even been possible? Would it be practical? Could I be like her? I was watching her as her friends came from behind and open the door for her while mine was trying to decide it was proper for him to do so. She seemed determined going forward, energetic and made no fuss over the fact that with every step she's risking a fall. And her whole body is in motion, getting a workout. Her knees were not exactly straight, but she was making it. Isn't that the point? As I was looking at her leaning from side to side, surrounded by friends, not the fastest way to get around I thought- good for her.
Thursday, June 13, 2013
And a job well done.
I don't know everything about all areas of the law. And I have to say, I'm exposed to new things all the time. The Florida Bar requires us to be competent in the matters we give legal advice, but even if there's something we don't know, we can make ourselves competent by researching, reading and learning in many circumstances. Still, if it's something I'm doing for the first time, I double check, I triple check, just to make sure I'm not forgetting something, and yet there's a nagging discomfort that I may make a mistake. I stress about everything- that's just how my mind works. This April Florida unrolled their new e-Filing system. All our court documents now reach courts in a pdf or doc format through a website. And I have to say originally I found it pretty scary- with one click of a button your work is sent into cyberspace. It's off and done- you have no control over it. Can't undo it, can't look it over. Call me old fashioned- but I like looking at something printed and putting an envelope in a mailbox has some cathartic quality for me. Being an attorney is a stressful experience if you think about all the ways things go wrong and all the mistakes you can make. But there are moments in life that make all this worthwhile. And no, I don't mean getting paid, although there is some satisfaction in being able to say: I made this when looking at a check. The first one I ever got from a client I wanted to frame or put on a refrigerator. Isn't it amazing to finally be able to pay your own rent? Make a living? But this is not it.
Recently, I got a note from a client thanking me for all I have done. And I felt that while I've done all I could and all I should have done, I didn't do that much. And I only did my job. A job I was paid to do. I felt uncomfortable enough asking for what seemed to me was a lot of money, but they were happy to pay it. And they were happy with me. Because I was there. Because I listened. I paid attention, I was patient, I explained things, I was helpful and supportive. I guess I know how some of the lawyers get and I know what it's like trying to reach out to anybody- for some help, some humanity. When you feel lost and overwhelmed and your lawyer is not returning your calls, is conveniently out of his office, feels cold and distant. I've dealt with lawyers like that when I myself was lonely and desperate. I was hit by a bus, I've dealt with immigration, I needed help with disability discrimination on the LSAT test. I know what it feels like. So when I get a nice note for doing something I was compensated for, I'm thinking maybe I'm on the right path. Maybe I could make this work, maintain a regular practice, that I have long decided not to have. Maybe I can be good at it and I can enjoy the feeling of a job well done?
Monday, June 10, 2013
As you know, this Fall I'll be flying over to Munich to talk about my experiences with Conductive Education and Cerebral Palsy. I can only tell you about my life, who I am and how I get there. I'm not sure if it's anything particularly interesting, but if they want me talk, I'll gladly do so. And I guess there's some value in finding out what it was like from my perspective. The years of rehabilitation- what it was for me as a child, how I viewed it from the other side of things- I'm not a parent of a CP child, nor was I Conductor. For the readers of my blog the things I say may not be terribly new, but I was asked to prepare an abstract for the things I plan to talk about.
Friday, June 7, 2013
The man on the corner
As I go out twice a week to grab a drink with friends, I find a man sleeping on the sidewalk. Sometimes the sound my wheelchair makes wakes him up, he turns around and says hello. I smile, so he doesn't feel alarmed. Perhaps seeing that it's me again, gives him some comfort? Always on the same corner, every time I go to a bar. He sleeps in his glasses. Loud noises and police lights rarely disturb him. I see him week after week and never learned his name. When the 2 o'clocks strikes and bars close, he packs up his backpack and wanders off somewhere, presumably to start his day. People running off, screaming looking for their cars, rarely even notice that he's there, even as they walk right pass him. There's a lot of himeless people in this city, yet he feels different. He seems nonthreatening although he doesn't engage. Quiet and clean, just focused on his own life.
He never asks for money. Once a friend who was walking me home tried to offer him some. Here's a man who could use $5, she said, pulling out a bill. Imagine her surprise when he said: No thank you. And yet, there he is, sleeping in his clothes, finding shelter under a bit of a roof that sticks out. The Florida nights tend to be hot and humid. It rains here often, yet he's always there. As I go on about my weekly routines, he does the same about his I guess, and we cross paths for a second. Who is this man? What is his story, what drove him to that corner off University Avenue? Where does he go when it's time to take off? I guess I will never know.
Wednesday, June 5, 2013
I moved to America thinking that most things I did if not all and the people I met had some purpose in my life. You may find this a silly notion and I don't think I believe that anymore. You have to admit, it's a great attitude to have when you start your life in a new country. You stay open and attentive, ready to learn and explore life. Ready to listen what others tell you. Tell you about themselves, but also about you. And I guess for me it was a way to justify ending up here, far from everything and everyone I knew and love.Anything familiar. It's almost as if I abandoned my home. Isn't it strange that one moment I had people, places and routines I called my own, that was the life as I knew it, and the next I was in a different place entirely. My family and friends thrived back home without me there. As if I stepped out of one life and into another. My brother had two children while I've been gone and my father faced severe heart conditions. And I guess nothing kills that sense of wonderment and excitement as much as the things I went through in the years that followed. Proving to my law school that I'm worthy of admission to the second program, explaining what Cerebral Palsy is and how it affects me. And then- months and months of doubt and confusion as I was fighting, kicking and screaming when Immigration was deciding my fate in this country. I'd get knocked down, over and over and get up every single time, but with each blow it felt that something was taken from me. Something I would never recover. Over the years I grew more sarcastic and cynical. I haven't pondered if there's a reason for me to be where I am, is there something guiding me on my path in quite a while. But I miss who I used to be. And I can tell you, during those first two years here, that now feel like a lifetime ago, I've met some amazing, extraordinary inspiring people in Gainesville, with stories, experiences so different from mine. Friends have moved on, new ones taken their places. Many of people I used to be closed to moved on to new exciting places. And I'm happy for them. But I'm still here. And I no longer ask if this is where I should be and why. Recently I met a new friend. We've been bumping into each other three days in a row. With nothing planned in advance and me deciding on a whim to go explore the town we were just both at the same place over and over. As my friend puts it, it's as if we were meant to meet. I don't think I believe it, but it's fun to think about. But oddly, it's one of the few people that get to see the less cynical and sarcastic side to me. And I don't know if there's a force driving me or if I have a direction, all I know is I want to be a good person. And do a good job.
Monday, June 3, 2013
They don't teach you that in law school
Last week I traveled across Florida to appear before a judge and help a client with an issue I obviously can't discuss. It was an something I've never dealt with before, so I wanted to do a good job. Heat an exhaustion took over when we arrived in Gainesville late Thursday night. I wasn't really in the mood for blogging and on Monday I was to see another client with an entirely different problem. I guess that's what my life would be like if I decided to maintain a regular law practice. Get up every day to get places, meet people, get involved with their lives and problems for a nanosecond and then move on to do it again. But what happened in that courthouse made me once again think about the legal profession- what we do, how we do it and who we are. I was once again reminded that my role is not simply about advising on the law and winning cases. That a legal issue is primarily a human experience with tangled conflicting emotions. We step in, we step out to help them along. That sometimes the goal that people have initiating or responding to actions go beyond what law can get them. And it's more than simply getting a particular desired result. Win or loose my clients look up to me for reassurance. To guide them through the complicated legal procedure. A courtroom can be a scary place, it has to be comforting to have somebody there in your corner, who is there for you only - even if the facts are not in your favor. And having the judge deliver his decision has a cathartic aspect. I've seen it time and again how a petitioner and respondent has an emotional response to what the man in the center has to say, even if it'snot unexpected. The stress, the pain that goes on for months, then hours at the courthouse waiting for your turn as if it was a matter on life and death, even if the outcome can be expected. The release. The relief. A sense of finality and closure. Sometimes they just need to hear it. Be there, so they can move on with their life. I understand the need for having a friendly face. Through my years of dealing with immigration there were times that I felt scared and alone and overwhelmed by everything around me. Often I felt my attorney wasn't comforting enough when I needed some warmth in my time of desperation. My life was in his hands, it was my entire future, all I had, yet to him I was one of many clients on his calendar. These days I'm on the other side of the isle. And I can say that I think as a profession we are not well prepared to address our clients' issues that go beyond simply rendering legal advice. To help them come to terms with whatever the decision may be, especially in areas that feel particularly personal like family law or wills that are all about human stories and emotions. You try to be as understanding and as human as you can. And it seems like, being in their life for a while you can't help it but to take some of their drama and grief on as well. In law school we are taught a lot of legal theory. The concepts, requirements, the elements of the case. If you're lucky you get to do some practical courses as well. What it doesn't teach you that much, outside of what jumps at you out of the pages that you read is human nature. Coping and healing, dealing with fragile emotions, all those things that make law a human experience.