A technical visit

"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.

Re-learning

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.

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!

Blessed

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.

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

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.

The Intro.

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.

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 book. But how do you pick a title? How do you choose the right pictures? What can I say. I'm a busy bee. Between the very few clients I've been dealing with, an opposing counsel whose filings forced me to redo a month's worth of work and saying good bye in a meaningful manner to the cast of our visiting summer musical, there was one more thing I needed to get to. As I go forward clearing pressing matters off my desk this was one of the things I actually dread it. As the time approaches for me to head over to Germany to talk about my life with Cerebral Palsy, it will also mark the release date of my book. My first and most likely only contribution to the world of literature. The thing seems to be coming together. I've seen the manuscript. It actually looks like something you could put on your table. But there was one essential ingredient missing. The title. I wanted something that would make a statement. That would speak volumes about me when you looked at the cover. No pressure. Just something as simple as all that I am about, what the purpose of it was and why this was put together. I still have my reservations about this publication and how it flows. I fear that when you read it, given how random it is and how tied to the frame of mind I was in while writing every bit it will not make much sense. It is not a book I've written is a sense of sitting down and committing words to paper. It doesn't have the continuity of an autobiography or a novel. The bits and pieces are selections from my blog with hardly any introduction or transition between the pieces. I needed a title that reflect that. A collection of thoughts rather than a homogeneous volume. Two people have sent me the ideas I liked the most. I wanted to somewhat combine them. Susie Mallet liked the title of my blog and a brief comment I made about my blog and how I see it as a collection of states of mind. Andrew Sutton suggested "Never, never quit" which is lifted from a title of one of my postings. Funny thing- I read it on a Monster Energy drink can. But it does tell my story and in ways is my motto. My life in so many ways has always been about trying harder, reaching further, fighting, kicking and screaming, not taking no for an answer, getting in through the window when they show you the door. And my true belief that if you stick through it long enough, people, things and events will come into line. Everyone will see your true colors, because who you are is always enough. So: Here it is. A title. Too long to fit in a Twitter message, yet I'm very pleased with it. I hope you will be as well.

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