Monday, July 29, 2013

Nine years.


Thursday, July 25, 2013

Come home (If only for a little bit)

I figured that the Munich Congress at which I'm scheduled to speak would be a perfect opportunity to visit my family. I haven't even met my niece and nephew yet (outside of a Skype connection online) and every time I call my parents I get an earful from my mother. There are so many things back home that apparently require my immediate attention. From sorting out banking issues to the kids' baptisms and getting a new ID. Maybe I should get a full check up? A don't forget everybody's favorite- the dentist. And every few weeks the same question pops up in the conversation. When am I coming home. Germany is right next to Poland, so I thought why not just extend my stay, fly over there for a few days, maybe two weeks and go back home to America. To address all those pressing issues I've been hearing about for months. That's why I've been playing for time when it comes to finalizing my travel arrangements. I need to know what my parents would like me to do. What are the things that I need to get to in person and how much time it would take. But my life now is in America. It became clear that my mom would ideally have me over there for an extended, maybe indefinite stay. I can see that she misses me, having me home would bring her comfort no doubt, and I miss her too. But going home for a month for me would mean weeks of sitting on the couch in front of the TV. My parents both work full time. Many weeks in Poland for me means many weeks of doing nothing. No one to meet, nowhere to go, nothing to see. Not much has changed back home. I still would be barely able to leave the apartment building, it's not even safe for me to go around our complex because dog owners back home run their large dogs often run freely. If it was any American city, I'd take a bus route map and venture off very much the same way we explored Gainesville nine years ago. Because I would know I can always board the bus and I can access most if not all buildings. In Poland all of that is still an issue and living in a wheelchair means a constant struggle. If there is in action plan and things I need to do, I needed my parents to tell me, and also make appropriate arrangements. But being there for a month just for the sake of being there for a month for me means just being severely limited,  confined to my wheelchair and powerless. And I know that this is not what my parents want, although the first impulse may be to have me there and hold on to me for as long as they can. I love my family- but I have no love for a place that has no love for me. And yes, I'll admit it. I haven't been home in six years and I left nine years ago. Visits like this are either way always scary. I always get a sense that me and my family are drifting apart. They have things in their lives that I don't know about and they know little about mine. My friends are passions are here. When I'm in Warsaw, yes, I'm still my parents' son but I feel like a visitor. And I have these feelings that as time passes and life happens we just grow to be people others may not recognize.You can't turn back the clock. Things happened back home when I wasn't there. My brother has beautiful children, my dad had a double bypass, they have day to day problems I don't relate to. Yes, my family loves me and supports me. They'd probably be the last one standing if everyone else turned away, yet going home is a very stressful idea to me. Partly because I feel this was the life I got away from. A life that tries to reclaim me.

Sunday, July 21, 2013

I'm 34... but only for now

I wasn't planning anything special for my birthday. I couldn't decide if I wanted to have a house party or not. Quiet drinks in the courtyard or just heading out to a bar? Every year it just gets so complicated to coordinate all my friends, plan, decide and then make it happen. Most of the time it feels like a lot of work. I wanted to be with people, but then I didn't want to see anyone. I'm at the age when I wouldn't mind time stop passing all together. 34 is not a number you celebrate. But then I'm proud of my  years, because every each one shaped me in one way or another; I'm proud of my life, I love  the people in it, as moody and reflective I get about it sometime. I am ready to turn the page and skip on to the next chapter. I'm in Gainesville for now. It's been nine years since I got off the plane from Warsaw and I would lie if I said I wasn't ready for bold, new exciting things whatever they may be. Birthdays and holidays, more than anything else remind me that I'm here while my  family is back home. That Gainesville is a transient town, yet I live here. And I've seen many kids come here to find themselves, become whomever they were meant to discover and move on to bigger and better things. And I'm here.  It's hard not to get nostalgic in a place that cherishes youth over experience and fun over dedication. Humor me, I'm getting old. Sometimes I can picture myself in a rocking chair smoking a pipe after a life well lived :) I was expecting a quiet night at home. Many of  my friends were out of  town, had a series of bizarre incidents, and the storm was about to derail any of the plans I would have made. I knew one thing- I had a ticket for Avenue Q- the bestselling summer musical sensation I've already seen once. It was supposed to be one of those extremely uneventful days. But the cast and crew had other ideas and gave me a wonderful surprise. At the beginning they set me up with drinks, so five minutes into it I was already having a lot of fun, but the best was yet to come. I know some of the people that put the show together and they wanted to make this special for me. During the second act one of the puppets pulled out a birthday card and hand it to me. Some people in the audience were confused- they later asked me if it really was my birthday, thinking it was a regular part of the show. The card was signed by the wonderful cast and crew of the show and was a touching gift. I'm amazed that they were able and cared to not only pull it off, but integrate it into the play in such a fun way. Earlier I've had the scandalous female puppet dance right next to me in my section. As my friends said it I had a private show. I had a more memorable birthday that I could ever wish for and the night continued for me at a bar next door. I love musicals. I believe I was eight when I watched "West Side Story" on Hungarian TV in Budapest with my mom. She let me stay up a little longer, which she would never do as it was one of her favorite movies. How can you not love the music the emotion, the talent? And that reminded me something about Gainesville. This is the place where I can go see a  play one day, a random dramatic book reading another, a burlesque show the following week and all in my neighborhood. This is the place where you get to meet and mingle with people so very different from you, yet everyone is so welcoming, inclusive and gracious. If I moved to New York I doubt  I would ever have an opportunity to grab drinks with Kristin Chenoweth, Megan Hilty or Andy Mientus, after their shows, but of course I could be wrong  and am willing to test this theory.... Thank you for a wonderful birthday.

Wednesday, July 17, 2013

Walking in my wheelchair.

Soon after my graduation from Warsaw University, my school's disability resource center asked me to consult on a brochure, a guide of sorts on how to deal with people with mobility issues. They already had one about individuals with vision impairments. What behavior was appropriate, what expressions were fitting, what humor was proper. I remember that many people found it surprising for example that people with no vision would colloquially say that they watch television. How can you watch something if you can't see the would ask. The goal of  course wasn't to perceive images the way I do with my eyes, but you listen to the dialogue and you follow the plot the way you'd have a story told, a book read or play unfold on the radio. You'd say "I watch Tv" because that's how we describe how we interact with the set, how we enjoy it, this is what it's for. And using those words for a quicker, more efficient way to express yourself in terms that everybody can relate to. I've written about language before, how we talk about disabilities and frankly how humans communicate about these issues continues to fascinate me. But I haven't thought about it in a while. Then on Monday night I was on my way home when I bumped into a very drunk very drunk friend. It's quite a stroll from midtown to downtown, but the night was warm, there was no risk of rain, the buses were out of service and I could use the extra exercise. Why are you in the middle of the sidewalk?- he asked. I, walking home- I replied and he started to laugh. To him it sounded like a joke? How can I be walking anywhere if I don't walk? But I didn't mean it as a joke. I use the word 'walk' to announce that I'm going somewhere, without assistance, using the power of my muscles. I realized that just yesterday I texted a friend I was about to have lunch with that I'm walking up to the building meaning that I'm close. I'd say walking distance and not wheeling distance. In fact I find words like wheeling and rolling used in a context of getting from one place to another as a bit awkward sounding. A little unnatural. People don't speak like that. I only do it to be funny or to bring extra attention to the fact that I am in a wheelchair. I can say ' you want me to wheel for fifteen blocks to meet you somewhere? That's too far'. That friend that I met continued to tell that story at a bar as an anecdote about me. I was sitting in the street but I said I was walking. But that's not all I say. If I go dancing to a club, I ask someone to dance, not roll around the damcefloor with me.

Monday, July 15, 2013

Gentle dental

Last week I went to a dentist again. A friend recommended this practice and just looking at how they were able to fix him up I could tell they would do a good job. All I can say is- that after a few weeks of dealing with a broken tooth, being told not to chew on that one side of my mouth and frankly being afraid to chew anything at all, I was ready to be done with it. And I needed to find somebody I can trust- the emergency dentist who I picked out of an ad tried to turn the thing into a joke and I didn't quite like it. As he was telling me my options he talked about pulling my teeth as if it was a laughing matter. All while I was in his chair, lost and hopeless. These people were different. A family of dentists. Mother, two sons close to my age and a daughter who's a hygienist. They did everything to keep it positive, the mood was a bit lighter, so I was engaged and distracted by the conversation, but they were first and foremost frank and professional. And you could tell that they seemed really interested in getting to know their clients who like them are in this community.

This again has taught me a great deal about how to build relationships with people who turn to you for advice and how in a small town like Gainesville we are all in this together. They were excited to hear that I was from Poland. They are going there for the summer. The way the conversation moved on from my story to my family and background, the mother asked me to recommend places to visit. When I'm there a week from today, she will have a map with her. The procedure I had done wasn't cheap. But it also wasn't the fastest thing to do. With  the preparation, the bleeding, the waiting, I was there for over three hours. Part of me didn't quite mind, not only because I was doing something to get better, but also because I was able to step out of my life for a few hours. I might have been in a dental chair and covered and in blood, but the emails, the phone calls I would be getting that week no doubt, the attorneys I have to deal with, some of whom are not the nicest people, all seemed miles and miles away. I try to treat everyone with respect, but above all- I am fair and honest. In the limited time that I've been doing this I've had people try to trick me, confuse me, conceal  some things and misrepresent others. I always tell my clients- some facts may not be in your favor, but I need to know it all.  Within   the boundaries of honesty I'll try to find the best solution and I will be courteous to the other side. Some of the times, I'm not offered the same in return. But in situations that  I get frustrated and annoyed or I spend the holiday weekend writing emails, because someone does something to to intentionally makes things harder I remind myself that people I help are like me in that dental chair. And they look up to me for help and protection. Guidance. I think about how I always believed that humanity and kindness are key to whatever you do in life. And that was what I was reminded of when I was in that dentist's office. How they went above and beyond to give me the most relaxed, pleasant experience under the circumstances. Just a very human and a very humane thing to do. I guess that's why they called themselves Gentle dental- Not because their tools weren't sharp and the procedures weren't painful, that there wasn't blood everywhere and it didn't take quite some time to do. But nobody thought my teeth were funny and I was treated with kindness and attention. Those are the qualities I value and believe in, and in some strange way  I was reassured about the way I should be doing things in my career that has nothing to do with dentistry.

Thursday, July 11, 2013


In the movie "Sabrina" the butler's daughter returns home from an extended stay in Paris transformed. She looks different, she talks different, everyone finds her captivating and exotic. She's confident, well read, as if her time away changed her into a completely new person. You may laugh, but this is how I originally envisioned my year in America.That one day I'd come home and everyone will say that they hardly recognize the person they have known for years. That when they see me me my posture is different, I'm skinny and tanned and just as skilled and fast in my wheelchair as people I see in movies and TV shows. Have you seen how confidently Maculay Culkin goes off the sidewalk in the movie "Saved!"? I have always been wanting to know how to that. Yet, back home when I consulted some wheelchair activist nonprofits that give lessons I was told straight out that they don't deal with Cerebral Palsy cases. Without ever seeing me, over the phone. Same with disability driving classes. And if I were to live in Warsaw I needed to drive a car. When I was younger I have always had this feeling that somewhere there's adventures, people, music, laughter, friendships and love waiting for me.  The life I was meant to have and the person I was destined to become, who I had yet to find. But the goal has always been for me to return home. I would have this life altering experience, the one that changes me forever, but then, with lessons learnt, I come home. Those were the dreams that I've had since I was a teen. That time away from my family would transform me, if I was just given a chance to try. A year... A year was all I needed . The change would happen externally at first, but then after I met the new me, I'd give me the confidence I was lacking and become different on the inside as well. You can tell I didn't like myself very much back then.

People don't believe me when I say that I was never planning to stay in America. I've always dreamt to visit, to go to Disneyland and see New York City. Holiday of a lifetime. But I never expected to be here as long as I was here without my family. And they are often surprised that I don't really think of the US as a land of milk and honey. If it wasn't for my disability I'd be perfectly happy in Poland. It has a lot of opportunities for people who are driven, motivated and well educated. Just look at my brother- he was able to build a very comfortable life for himself, he's accomplished and respected. If it wasn't for my disability I bet I could do well too. I graduated summa cum laude from Warsaw University, my diploma is in latin, top of my class. I have backgrounds in British and American Law. I'm pretty sure I'd get a lot of offers from law firms right out of school, if getting around wasn't such a big problem. If there weren't steps and stairs everywhere. A lot Warsaw Uni graduates jumped on the opportunity to come to America to study for a year mostly to improve their resumes. I didn't. And no matter what qualifications and skills I've added it still wouldn't change the fact that in a place like Warsaw I'm mostly a liability. But don't I deserve something? When is it my turn? Yes, if I was walking I'd be pretty happy in Poland. And if I got bored with it I could just pick any other place in Europe. For a year or maybe for a month or a lifetime. Weekends in London perhaps? I stayed here not because it's the best place in the world to be necessarily,  but because it's the best place... for me. And had Poland been more welcoming and inclusive, I'd book a ticket in a minute and never look back.

Tuesday, July 9, 2013

My book revisited.

"So the difference is in the print format and binding?" asked a friend jokingly when he heard the news about my upcoming book and my explanation that I would never do something as self indulgent as write one about myself, pointing out that I have a blog. Interesting point, but I don't think entirely valid. To me, the difference is not in presentation, but in motivation. I started it two years ago with this idea in my head that The Jordan Klausner Foundation needed a blog. That it would encourage donors and give parents hope if we chronicled our progress. Every little miracle that happens daily at the Conductive Education Academy. That if people got to know James, Kata and myself, why we do what we do, who we are - more families would trust us with their Cerebral Palsied children. Soon I realized that the Foundation didn't have much to report on, not because there wasn't anything newsworthy going on at the school, but because we haven't figure out a way to preserve it without it being too disruptive on the school and time consuming on the Conductor. For a non profit that hasn't had its website updated in years and never viewed it as a high priority, we have never properly figured out how to reconcile the way we do business and keep things private, with a desperate need for exposure and publicity. But I had the time. I could write. And I soon discovered that in 20+ years since I first started Peto rehabilitation, not much has changed. That I can relate to those kids, that I've been through what they are going through now. I also hoped that given that all and all I turned out pretty good, seeing me and hearing from me might give those parents motivation to stay on and push harder. So, I started writing about myself. About my experiences, first in relation to Foundation's work, then more and more personal. My victories, fears and doubts. Not much different than what went on behind our doors, 20 something years later. But with one difference- you know how I turn out. As I began to drift away from the Foundation the blog became more and more personal. At first I tried to keep it light. But then I decided it would not be honest of me to shy away from the darker undertones. I'm energetic, optimistic and driven. But a disability is no picnic and it often forces you to confront some very troubling thoughts at a very early age. Like the fact that you're different. Or that you fear the future. Or that you feel like you don't belong. I started drifting away from the Conductive Education influence on my life into the general CP territory. Andrew Sutton did bring be back a few times when he asked to write about the things I remember about Budapest, about the years in Peto Institute. And those were amazing times. My childhood- full of books, imagination and wonder. With an overwhelming feeling of safety. As the blog became more and more personal I decided to move it to a separate domain. A fun and poignant nickname I have thought of for myself. I've enjoyed what I've written so far, so I decided to continue. I liked how it appears to have given me more of an ease of expression in English. I think my later posts are much better written. The blog also forced me to once again revisit some aspects of my childhood, perhaps with a more critical eye. Things I have not thought of in years. And I can only hope that from such self reflection can only come growth. After I left JKF I kept the blog. Disability causes are still dear to my heart. And as I started a new nonprofit, some of the sentiments and doubts were pretty much the same. And yes, at that point I did realize that if I wanted to accomplish what I've set out to do I need more exposure- for myself and my causes. And I have far to go. This week I've been reaching out for materials that Andrew Sutton requested. Pictures from different periods of my life, things that I see in shaping who I am. Infancy, childhood, elementary school, high school, Warsaw University, America, Gainesville. Diplomas. Lots and lots of diplomas. Between the book related tasks, dentist appointments and dealing with other attorneys I'd say it was a pretty busy week. My friend Dee, when I explained to her the concept of the publication, started calling me Carrie Bradshaw. The Sex and the City novel was also a collection of columns. Of course there is no sex in mine and Gainesville is hardly a city.

Saturday, July 6, 2013

Give Love.

Why am I in Gainesville?  Every time I feel like I'm done with place something happens to remind me it's not so bad here, after all. I was planning on not writing this week, given that it is a national holiday that this year fell on a Thursday. Still, what happened two days ago gave me a good feeling and I felt inspired again. As I rolling pass a pub across the street from my home, ready to begin my night I saw two of the visiting actors sitting by the tables outside. They were having drinks with a someone I didn't know while a well known homeless man, very visible in the downtown area was helping to clean the tables.  He calls himself a prophet, he claims to know the Bible although according to him- he never read it. He says he makes wind blow in the trees and when he cries it rains. He's very opinionated and often quite loud. He calls himself Eugene and everybody knows who he is. He says he once wrote a piece for a local newspaper, "Meet your neigbors, the homeless" and once he was a mayor of Tin City. I always try to engage him when he says hi, because through it all I think he's a positive person. We are all neighbors of sorts and everyone deserves respect. I don't mock him, although I do talk to him as if I believed everything he says was true. He was also quite homophobic. "Gays are not one of God's special people"- he told my lesbian friends once. Still, I don't need to agree with you, for me to respect the human aspect to your being and I try to treat people with kindness regardless of how misguided I think they may be.  As I was going by I said hi to him, the actors and their friend. I mentioned they were in theater and the four man started talking. But I didn't stay. At the strike of two the bars were closing. On my way back I bumped into Eugene again as he was helping to close a local pub. He asked me if I could lend him some change because his rent was due. When I asked him how his night was, he told me that he saw something beautiful. Out of three man sitting at the table one promptly left. He then overheard one of the other two confessing love or attraction right there and then. I wasn't sure which two it was and I  didn't care, or who was talking and who was listening. Eugene explained that they also said something along the lines of "I have liked you ever since I saw you for the first time" and he felt very inspired. "I thought you believed that 'Gays are not God's special people'"- I asked. "Love is love"- he said going on about how it had moved him. "I think that there's not enough love in the world"- I said. I'm glad he had this eye opening experience. And it got me to think. Is that all it takes? To see something moving and true and human to change somebody's mind? Can we change? Change what we feel about others and how see the world?  Is it as simple as just letting someone stepping into somebody else's world? Could it be that it's never too late to change somebody's mind, erase first impressions, see each other as human beings, undo prejudice. I gave him some change and I went home that night with a new hope for the human condition.

Tuesday, July 2, 2013

The Dentist

I've never had any dental procedures done in America before.  Back home if they're not free, which a lot of them are for the insured, they are much cheaper than here. I'd say 1/3 of what I'd pay in the US.  I usually go home and most of the time it's worth it. What I'd save on a crown or an implant can pretty much pay for the plane ticket. If it's a paid procedure there's usually virtually no waiting time. That's why even among other European Union states Poland became a popular destination for people wanting their teeth fixed. Our dentists are not only cheaper, but they're well educated and skilled. And I was lucky enough to have a dentist in the family growing up. Unfortunately going home is not always an option. Few weeks ago I broke a tooth and decided I can't wait much longer and ignore it. It felt like time was of the essence here and I needed to act. Finding a dentist to see me was a challenge on it's own. Everyone I called seemed to be booked for weeks to come. Finally I opted for an emergency procedure, on the other side of town, for an extra fee, with consultation limited to that one tooth only, for an extra fee. My concern as always is, how will I get there and how will I get back. If I'm by myself, I'm confined to the bus services area. Some places you can't really get to easily using public transit, especially if you have never really been there and you don't know how long it would take. Any appointments are always very early in the morning or in the middle of the work day, so finding a friend to take me is never easy and you don't want to worry about the mechanics of making the appointment if you are worried about all your teeth falling out. But I did find a ride. A good friend agreed to work her work day around me, with her young daughter in the back sit, just to help me. But the fun was only beginning. On the first day, we get there and it turns out we were sent to the wrong bench. On the next, the dentist takes one look in my mouth and decides I need to be sent to an endodontist right away. I need multiple root canals and they can set an appointment for the afternoon on yet another side of town. But I don't drive. So over the next 30 minutes I'm desperately trying to get in touch with my friend who went back to work to see if we actually can do it. But she did. With her daughter in the car she took me to the endodontist and then both  waited on the couch in the lobby until they were done. That was a 2-hour procedure and I was told straight away they would not know if the tooth can be saved until they were done. They started by saying that there's a number of safeguards they have used with Cerebral Palsy patients. I forgot what they were, but I never heard of them before or needed them. I have to say it was a stressful time.  The clamp they have set in my mouth kept falling off. The dentist kept making nervous and annoyed faces as the procedure went on, nobody was telling me what was going on and it looked like a lot of work. I was getting scared. He then told me that I looked uncomfortable which was making him nervous. Half way through I was looking for a good way to position my legs. It was taking really long and I felt like I was really close to the chairs edge and I'm going to fall of it. Finally, we've discovered that putting a folded blanket under my knees for support and orientation gave me a lot of comfort. In the lobby, a friend waited patiently with her daughter napping next to her. I have to say, not having to worry about my cell phone, wallet and other belongings really gave me a lot of comfort as I went in. I just gave it all to her and was able to shut off my mind. Also, if I needed help transferring in and out the chair there was someone I could ask. As independent as I am, it feels good to have people you can rely on in situations like these. That's when I realize I'm blessed with amazing friends. As far as the tooth goes, we will not know until I go back for a crown fitting. But the dentist felt optimistic. Getting another appointment was another complicated story. Welcome to America.