"There are so many things you need to do here"- my mom would say for the last two years. When I stepped off the plane in Warsaw I was expecting a very tight, time consuming agenda from day one. I've heard of many issues I simply needed to address that demanded my presence and could not go on without me. Issues I might add, that would get a mention every time I called home. From formalities to doctors, from banks and picking up a new ID to the baptism of my new nephew and niece, I was the one missing component without which nothing could be set in motion. And I would get an earful at least once a month. In October I'll be speaking at the World Congress for Conductive Education in Munich. With a free flight from Europe I was offered I decided to go early and arrive in Poland, which is just east of Germany. I figured this will allow me not only to mentally prepare for the engagement, but also visit my parents I haven't seen in three years and brother I last saw face to face six years ago and also address all those supposed emergencies. Turns out there are no problems with my banking, my brother's reluctance to baptize his children has nothing to do with me and I couldn't pick up my new Polish ID because I'd never be here long enough anyway. My parents I guess just really wanted to see me and were looking for practical, non emotional reasons to have me come home. I did get to go to the dentist which after all the adventures of trying to find one in America and the expense gave me a peace of mind. I also got to meet my brother's children for the first time, something I greatly feared and my parents never understood. My mom loves kids and is very good with them, I am not. And she wanted to make the introductions right away. I haven't slept in 36 hours. I was on three different planes. Hygiene and restroom use were all a problem throughout the trip. I had long layovers. One flight was delayed and there was no chance of me making to that connection. Disability assistant in Frankfurt was walking with me to the other gate for about 2 hours and at one point we left the security cleared area and came back only to be screened again. Then in Warsaw we were kept inside for a longer while because some one left a piece of luggage and no one was allowed to leave. Finally, dead tired I arrived home and wanted nothing but sleep. I couldn't even bring myself to shower.Yet my mom brought my brother and kids that date, turned on the lights, kept grabbing my face and attempted to wake me. I wouldn't have any of it and just slept right through it. I fell out of practice of being with other people in the house 24/7. Talking all the time, speaking to you or each other at the same time, slamming doors or walking in without knocking. Or suddenly just ending up in my room at once doing something else while I'm trying to focus and work. When I was younger it would annoy me a great deal. Now, I just treat it with more understanding and kindness. I tell myself they really love a great deal. Then I tell myself I'm only here for ten days. I was hoping to lose some weight with more spread out, set meals while I was here, especially since my mom made a point to tell everyone that I'm now fat. don't eat a lot, just infrequently and I'm under a lot of stress. But I feel like I live with a couple of hobbits. Where one meal ends another begins. New people stop by to see me and cakes and ice cream always land on the table. My parents cook every day,can't get them to stop and can't offend their efforts by declining food. Back in America my clients ask for updates about cases I handle reminding me that somewhere across the pond is my life now.
Sunday, September 29, 2013
Friday, September 27, 2013
When I landed in Frankfurt on Wednesday I strolled around the airport for a bit looking for a restroom. A restroom I should clarify, that I could use. And it's not an easy task. I grew up in Europe, but the last nine years in America have spoiled me to expect the same level of accessibility I find back home everywhere I go. First observation: be prepared to not find a wheelchair friendly cabin when you go into the mensroom. "One for you is the next one"- a man washing his hands explained meaning keep on rolling down the hall and eventually you'll find it. It's very rare for me not to see a familiar set of grab bars whenever I'm anywhere public in America and mostly it's only the historic buildings and grandfathered in businesses I have any issues in. The second observation: the accommodations in America are pretty standard, regulated by law. You know what to expect, you know what it's looking like when you go in, you can easily develop some routine or procedure. The toilet is usually in the corner by the wall with grab bars on each. When I entered the German restroom I was shocked to find that the toilet was in the middle of the room with swinging bars on the left and right. I quickly decided I have no idea how to use it. Do I lift one and get in from the side? Do I hold on to both and turn around? It took me a while to figure it out. How to transfer balance from once side to the other and pull myself up on the seat. It's been years since I saw a set up like this and figuring out how to make it work takes time. Yes, it used to be that I could use anything sticking out to grab and pull myself up, or lean against appliances and furniture. And it always was different, yet I made it work every time. Yet, back then I had a better awareness of my body's strength and weight and at what angle it'd be best to approach it. I don't have that skill anymore, because I don't have to. And it made it convenient. And it made me lazy I often talk about how I grew up not having any of those accommodations back home. Growing up I'd use the sink and the toilet sit to balance my body. I knew to what extent I can depend on my knees, where is the best place to grab and pull, when to turn, how much energy I'd need for a move and at what angle. A few years before I left my parents renovated their bathroom. As part of the effort to simplify things and to not have me grabbing onto the sink anymore they've put a very thin grab bar, coming up from the floor, between the toilet and sink. Getting on and off was pretty automatic. Yesterday, the first thing I had to do was learning my parents bathroom. Where the things are and how to use them, because I fell out of practice. Yes, I'm not as energetic as ten years ago and I've gained some weight so it was bound to be harder anyway, but I honestly needed to figure out these things again. How to use the really tiny railing and how to balance my body on it. And yes, my weight and mobility level would probably require some new solutions. Where to pull? At what angle to put my arms to stand up in the bathroom? I guess you can say I needed to learn to use the toilet again. Then I needed to figure out how to crawl into the bathtub, something I used to do every day. Where to put my left leg and my right leg, how to transfer my balance it all became pretty crucial on my mission to take a bath. I needed to understand my surroundings and also how my body works, what I'm safe and comfortable to do. I needed to adapt and figure out what worked for me. And it felt like I was doing it for the first time.
Monday, September 23, 2013
Next stop: Europe
On Wednesday I'll be boarding a plane to Poland. In case you haven't been paying attention I was invited to be a keynote speaker at the world congress on one of my disability's rehabilitation methods. I will also be presenting my book, an edited collection of my blog postings, "Never, never quit", which share the theme of my childhood experiences with Conductive Education. I'll be flying in from America, the congress is in Germany, while the book, although intended for worldwide availability is published in England. A truly international enterprise! I've decided to spend a few days leading up to the speech in Poland. It's been years since I gone home and quite a while since I got to see my parents. It's not going to be a long visit and with how wheelchair inaccessible Warsaw is and how hopeless it makes me feel it's for the better. We've decided that I'll be arriving in Poland, but I'll leave straight from Germany. The congress organizers have offered to pay for my flight and up to three days in a German hotel. The event is also three days long, my presentation is on the last one, but I was asked to be there during the entire event. Logistically it'll be hectic. I'll be staying at my uncle's in Munich the day before the congress and I will be checking out the day of my presentation. Luckily, I'll be meeting my parents there, because my flight to America is the day after. Not the most impressive planning I must say. But then, neither is my flight with layover after a layover in Charlotte and Frankfurt before Warsaw. But you would never know I'm leaving the country in two days. I have just settled a case on Friday, and I'm really glad we were able to sign the stipulation documents before I left. No matter be it a few hundred, few thousand or a few million dollar case it seems the amount of work and focus needed to go over the paperwork is exactly the same and having meetings with people always text time. I didn't even have the time to stress about giving a speech and how these people will receive me there. Anything with the word "World" in it sounds like a pretty big deal, right? So I have been frantically trying to email the local and national media to get anyone interested in the event, my role in it, conductive education and my book. That kind of exposure can help the organizers but can also help the foundation. In the meantime I have been figuring out flights to get my parents from Warsaw to Munich in a way that will not wear my dad down and be a risk factor for his heard. Having it go together with a flight I need to find for myself, that I can pay for with my credit card rewards points. Finalizing dates of the hotel. At the same time my mom has been making requests, not fully grasping the concept that I don't really have the time or means to go shopping. Her voltage transformer, a modest 17kg of weight is already taking up half of my luggage. But I'm not even at the point yet where I feel I should panic. I do grow tired of how big of an escapade international travel is. As good as visiting family may be and I'm grateful for the detour I'm not there socially. I was asked to do something by the Conductive Education community and I hope not to disappoint. I also think I have only one chance to build enough interest around it to harvest it for my disability causes in America as well. Quite frankly I'm ready to be done although it has not yet started. And I hope people who invited me will not be disappointed with what they see. While I'm happy to do it and in ways flattered and honored I'm still not convinced if I'm the best choice to speak about CE in a global forum. Time to throw some more things in and zip up the bags!
Thursday, September 19, 2013
A friend's sister who has Cerebral Palsy ended up in an ICU again. As I'm in shock and in fear of what may come next I can't stop thinking how lucky me and my family had to had been all those years for being spared all of this. Every few months I hear about these young people. Bed ridden. Much younger than me, didn't really to experience much in life- their condition more extensive- face life threatening conditions. Nothing left to do, but pray. As much as I don't want to turn this into discussion on theory of Cerebral Palsy origins, I can't stop to wonder. What is the difference between us, on the books we have the same disability. A few seconds, a few milometers, a few more dead brain cells? Why am I here and they're there. Is it all random? Why was I spared? That's why you will never hear me complain about my disability. What do I have to complain about? I feel blessed. I'm alive. I get to explore the world and meet people. I get to move around. I see, I hear, I speak and I talk. I open my arms and experience the surroundings with all my senses. I have my plans. I have big dreams. Not for myself, but for the things I can do for others. No sir, I have nothing to complain about. So people give me odd looks on the street. Should I even care? So, some are more likely to prejudge and dismiss me. So it's harder to do some tasks and I need help with others. So wheeling is not as fast as walking. Big deal. So I don't look gracefully in my chair. So what? I don't get to climb stairs or tango and getting a date is not as easy, I will never become a painter or a dancer. Who cares. Life is precious and I love mine. When I ask why me it's not out of frustration for being in a wheelchair- it's why am I doing better than people who have the same thing. And I think whenever I feel sorry for myself, because I have those moments just like everybody else there's nothing that puts things in perspective quite like this. Yes Ma'am! I'm blessed. I have everything that I need.. And I should give back more to pay back this huge debt I owe the universe.
Sunday, September 15, 2013
What could go wrong.
A few weeks ago I shared a story bout how I got locked out, or perhaps locked in at the basement level of a garage next to a campus building that is undergoing construction. I ended having to roll up a very steep car ramp to get back to surface, because the elevator access to any other floor was shut down. I worked up quite a sweat pulling myself by whatever I could grab on to, fearing for my life, that at any point a car can come speeding at me or that because of the angle I flip or roll back down. All of this, because I was following a route appointed as the main access into the building. Now, a few weeks have passed since that traumatic experience. By the door through which I left they have now put up a sign- "no handicapped parking access after hours". The problem was, my incident didn't happen "after hours"- the building still had student programs going in full swing. There was no access to parking, if you will, during the hours. Additionally, while the notice now tells you to use some other exit to leave on another floor, it doesn't really tell you how to get back to the the same point via which you entered. Imagine for a second I have a car parked on that level. How do I get back? So many things can happen to me while I stroll around between cars in the parking garage. I could get injured, suffer trauma, even die. Somebody didn't really think this through. So much potential liability, that you can easily avoid by having a clear and straightforward access policy. So many things can go wrong. And then, I'm told "unofficially" to use the loading dock basement exit, the one the pedestrians are strongly advised not to use in the first place. And then- the mystery is solved. The night manager tells me he prefers to lock the access to the building early and he was never really told to do it. It's his own doing. He doesn't like to have the kids practicing routines in the open halls on the other side- he says. He fears for the screens and equipment that may be stolen- he says. Now, I'm not exactly sure why his fears should be any greater if he keeps it open for another hour like he's supposed to. Whatever may have happened could have just as easily taken place at any point throughout the day. If there's a security issue with the building- address it with appropriate measures. Put a camera in. Have the night managers patrol it. Shutting access to what the signs outside point out to as "access to the building" is obviously not the way to go. It seems more convenient for him, a part of building he doesn't need to worry about. But it puts me at risk. And what he doesn't know is while his mind is at ease because that segment is tidy and clean and ready for the next day, had something happen to me, both him and his employer would be served with a negligence suit. It's not only himself he puts at risk by making his job easier, it's the university and by extension the state. And when I was locked out of the building and stuck on the lower level garage there was no way, but to risk and health to get out. I'm not particularly litigant when it comes to my own matters- I leave that mode of thinking for my clients. I'd rather educate and show people why what they're doing exposes them. Don't be enforcing your own policies. And I'm not picky- if you have another way for me to go show me. But there has to be a way to have me leave the garage safely, if I can't get back into the building. Many people think of ADA access as a pain - but it serves a purpose- and often more immediate one than noble cause of inclusion. It gets in their way, it gives them more work, but it keeps me safer. There's a reason for those rules. People of ADA guidelines and standards as something they have to comply with because they can't stop and think of why they're there. Put an actual person behind it. What can happen if I'm locked in a parking garage and the only place I can go to is back to the building that has since locked down. I can risk my life rolling up that ramp. What would happen if I wasn't able to pull myself up? I'd have to wait to morning to be rescued, no food, no water, no restroom, underground. My cell- long dead, doubtful I get service. My tablet- can't pick up a Wi-Fi signal. All I could do is wait for 8 hours- in a basement. It seems to me that we rarely think of those what ifs- and something tells me that manager wouldn't be as eager to look for me as he was to lock it all down
Thursday, September 12, 2013
Children of the VHS era
"What is the scariest movie you can recommend?"- a friend asked on Facebook not too long ago. Boy, I've seen quite a few. Some made me afraid to go into a dark room for months or check if someone is hiding in the closet or behind the door. Most, I'd say- by today's standards, I was much too young too watch. But I grew up in different times. The late 1980's- the golden era of VHS in Poland. It seems that you can't watch a movie on TV today, without it being either censored, edited or having odd age ranking icons in every corner of the screen. Back then it seems we were less concerned with that. We understood that some nudity and violence would most likely to happen, and none of us grew up to be deviants or psychopaths. My parents primarily wanted me to understand that what I was watching was fiction and how we reacted to the film (as in fear beyond reason or panic) mattered to them more than what we would actually see on screen. Those were the days when getting a good copy of a movie was a rarity. When you'd find one of a movie you liked you'd copy it for your own collection and lend it to your friends. It wasn't illegal at the time as it was years before modern copyright laws were introduced in Poland. One of the first films was Police Academy that our friends and family liked to borrow freely. And my mom didn't like that tape to people much as she was proud of the high quality of the recording. Back then, you'd rent a tape from a local video store that were popping up everywhere, including my elementary school - for pennies. A lot of them were bad copies, on which the screen was blue or lost color often with even worse translations. Voice over with really inventive Polish equivalents of English words. A tape would have two or even three films recorded on it when the longplay technology became popular. The rental store would have printed catalogues of titles. You'd typically pick based on a choice of a movie that you really wanted, the other one would be a surprise. I remember how we would borrow a second VCR from friends to copy tapes, but the most challenging part was figuring out how to connect the cables. But back then, until 1992 we've only had two TV channels in Poland, both public. In the summer of 1989 my mother went to America for training in this supposedly new hyped method of treating Cerebral Palsy- The Doman principle. My dad was already there, so my brother and stayed with my aunt, uncle and cousins. We'd just pull out the folding bed in the couch and watch movies. And there was a lot of movies to see, as my uncle started a new job at a video rental place and brought new tapes home every night. My brother and cousin are about seven years older than I am and they would often play tricks on me trying to scare me. A lot of the films were popular selections, like that Clint Eastwood flick with the monkey or the one were Stallone arm wrestles and drives a truck. Some were horrors. I remember I was playing a computer game in the same room when my brother and cousin and her boyfriend started watching John Carpenter's "Prince of Darkness", to date the scariest film I recall, although I have never seen it again. I remember the scary music, the setting in the old forgotten church and the old, primal evil discovered in the basement by a group of scientists, that first infects them and then brings the dreams of apocalypse set for 1999. When you ask me about scary movies I think of that summer. How my cousin's boyfriend tried to scare me by making noises from the film. Kids just being kids- How I was ten, excited for my parents to return from America with gifts. And how after the fall of communism we were all excited for this new reality that was taking form and we didn't quite understand. I remember how my brother tricked me into watching Predator, by saying that the heat vision sequences are from military night goggles. A year later or so, it was my mom who insisted I watch scary films with her- because everyone in my class has already seen it and she wanted to toughen me up I guess, so I'd be like other boys. I remember watching Horror Express - a movie about a missing link alien frozen creature that terrorizes passengers of a Trans-Siberian train with the curtains open in the middle of the day. The being was harmless until the lights shut off and it looked into its victims eyes. Suffice to say I would not look at people in dark rooms for a few weeks after that. And the red spark in the monster's eyes is one of the things I remember 23 years later.
Monday, September 9, 2013
It's official: The introductory paragraph to my upcoming book: "Never, never quit". It's edited from my earlier writings, but it's what I submitted to the good folks editing my publication in the UK. Also, I wasn't quite up for writing an original piece for today, so forgive me, if only because it's Monday.
Wednesday, September 4, 2013
My greatest fear
Every now and then a disability story hits Polish headlines. It always plays out the same way and it's never uplifting. I came across yet another one two days ago. A young man from a small village, confined to a wheelchair with an unknown condition is left to fend for himself after his parents' death. He doesn't have heating, he barely gets by; the conditions he lives in are hardly sanitary or fit for human habitation. He pays people to bring him his groceries. Keeps dogs that he wants to let go of but no one would take them away. He rarely gets out. The newspaper points out that a spot in a senior's home is the only thing he can look forward to. His dreams- to have a job, to make a living and to be self-efficient. "Why not aim higher- a star in sky"- people comment mockingly under the article. That was my greatest fear and a nagging thought in the back of my head for as long as I remember. What happens if something happens to my parents and they can no longer help me. I'd have to rely on the kindness of strangers and my interaction with the outside world would be heavily limited. Hopefully my story would not be as drastic. I have an education, a brother and a large family. Likely we'd figure something out. But there's no denying that in the Poland of the 90's, the 2000's, just like in the 80's I was incredibly dependent on others. My life as I knew it would end and I'd have no say in the matter. Think about this- in Poland I'm classified as permanently unable to work, as if all work involved lifting stones and mining coal. In America, I'm a lawyer in two jurisdictions, a high end profession and I'm on equal footing with other attorneys. In Poland a doctor needs to sign off on any worker's ability to fill a position and the state is more comfortable paying me a monthly check to stay at home and do nothing. In the eyes of the government, I'm useless. But I have to say that my father contributed to some of those fears. I guess he thought he was motivating me when he believed I wasn't applying myself. He was certain I should exercise all the time. If I didn't - I lacked drive or ambition or simply didn't want to walk bad enough. He left me with an image in my head at a very early age. For many years it gave me nightmares and I don't think it was fair of him to burden me with this when I was seven or eight. When mom and I are gone- he'd say- you'll end up in an institution- you'll be stuck in a bed all day with a hole underneath you to exchange the bedpans. But even without it- as I was growing heavier after my fifth, sixth, seventh grade and my parents struggled more and more to walk me up the stairs, I feared that soon it all, my slice of normality get an expiration date. That I lived on a borrowed time. You ask me why I left Poland for America? I didn't want to simply exist, I wanted to live. And owe everything I do, win or lose to no one else, but myself.
Sunday, September 1, 2013
Isn't it strange how we grow out of love for things and places we used to adore as children? Some of my fondest memories are about the fun filled summers I spent with my parents, brother and cousin when I was just a little boy. We didn't need much back then. And still we knew how to have fun. Be it at my grandparents' summer house with an orchard or my dad's work vacation spot in a place called Urle. The smell. The energy. The joy of simply letting everything go, and just being kids, having fun. I'd say, it'd be unthinkable by today's standards. Imagine- no indoor restrooms. Showers in some designated common area. Electricity going out at least once a day. Only a black and white portable TV, with- God forbid- two channels. Part of it was that I was with older kids and I was the youngest of the group. Everything they were doing felt "cool" if you will and amazing. I used to idealize my cousin Grażyna. It doesn't take a lot to impress a five year old, but she had a dog, kept a diary and knew how to make everything into a game. My brother, seven years my senior also had his moments, although he was there to mostly tease me and go off on his little adventures. I used to love going to Urle when I was little. We'd stay in little wooden one-family houses in the middle of a forest. Plenty of other kids to play with, although the trees that surrounded us looked pretty scary at night. We'd have figure out or own means of entertainment. There was only a shower/restroom building, a TV room and a small store on the premises. The nearest town was quite a walk away, I think something like an hour. We'd make the trip a few times a week, mostly for the legendary blueberry stuffed pastries. The ice cream was a little more of a risk- given the power outrages I remember the fear of salmonella being a real concern. There was a river not too far from the spot and I believe we'd justr drive there. My dad had a car and he was also an excellent swimmer. I think he taught how to every child in my family on both his and my mother's side. Part of it was, we had fun- because growing up in communist times we were used to not having much in the first place. And it was before the "age of technology" started for us. And I don't mean internet and cellphones and the constant need to be in touch, because that for us was close to two decades later. It was about three years before we got our first VCR and we adapted our TV to receive and display PAL signal. Two years, I'd guess before my brother for first exposed to a computer my uncle brought from work, a ZX Spectrum. Part of it was that the little house was full of people. But then I remember the 80's songs on the radio, waiting for our favorite shows to come on, like the Green Goose scary stories on weekends. I remember the "grown up" nightime films that at six I was determined to young to watch (and they were horrors) of which I was so scared that my parents would put chairs around my bed to block my view. Yet, the first inappropriate films I've seen was also in Urle, when one of our neighbors had everyone over for a viewing and then left the kids unattended. Nothing major. Just plenty of blood, gore, bad language and nudity. I remember vividly the group carrying me home on a spread sheet everyone was holding onto, although that night I was more scared of the Ninja that could jump in through the window at any time. But most of all it was my parents- who had the will and the energy to grab me under my arms and walk with me to get me some movement. When you have something to do, people to do it with and you're willing to make the best of it, there's nothing that can stop you from having the best summer ever.
Years later I'd visit some of the places I used to love, but then I'd already be in highschool. My parents wanted me to get out of town, experience some sun and fresh air, rather than stare at a monitor all day. They'd typically ship me off with some relative who had a young child or a grandchild they wanted to organize a quick summer for. Often, I didn't want to go, but had no say in the matter. My parents had a feeling I was getting a change of scenery. I felt I was being banished to a place without computers, cable or stable electricity for that matter. Wheelchairs and nature don't really mix. You can't roll through grass or sand. Most of the time, you'd put me in one spot and I just sit there. Who'd want to struggle with something so heavy? My uncles and aunts also were not up for doing anything fun, like moving around or exploring. They were most happy just tanning outside of the house, rarely moving a muscle. Sometimes reading some gossip press. That was their idea of relaxation and fun, wasn't mine. The more I'd just eat and tan and read the more I felt powerless and confined to my chair. Same places, different memories. And I don't think anybody can truly understand while I was so unhappy in the places I once loved.