The playground.

A few weeks ago I've read a post by a parent of a child with Cerebral Palsy who complained about the lack of playgrounds kids with limited mobility can use. To me, the question sounded more like a plea for advice. What to do, so the child has a positive experience. So he and or doesn't feel excluded from the games and activities and has fond memories of what a playground should be. So it doesn't feel like yet another reminder of the bodily limitations. A playground should be a place for fun, freedom and expression, something we all look forward to. I grew up in times terms like
'accessible this" or "inclusive that" were hardly in the dictionaries, let alone a major concern for anyone. I grew up in a country, where people with disabilities were not expected to be seen in public or be out and about using public facilities. But my take on the matter hasn't really changed. Regardless how "inclusive" or "accessible" some areas may be, the responsibility of assuring a fun and enchanted childhood always must fall on the parent. You can't really get around some mobility limitations- but a mom or a dad can step in and level the plane, so to speak. Be involved as much or make up for what the child's own body doesn't allow them to do. I think I've written about it before. When I was very little, five, maybe- six perhaps- my parents were like invisible motors on my back. They felt invisible because, while they would grab me under my arms and lift my weight so I could "walk" while they were holding me, to me and my friends playing it was as if they were not there. My mom and dad wanted me to have a sense of what it's like to run along with other kids. I couldn't do it myself, so they were there to give me that "boost". I loved "running" (as my mom held me) with my cousins in my grandfathers orchard. We had our secrets and treasures while items like an old, abandoned refrigerator felt like the best toy. Or "walking" in the garden. My fun was fully dependent on their participation and willingness to go outside with me, yet somehow I didn't feel limited. The things I remember included playing hopscotch and house with the kids in the courtyard play area outside our building. I knew my mom was there, but she just wasn't the focus. An almost silent participant. The point was, to have me included.  Kids have a short attention span and they were bored easily. The point was to have me always at the center, so they would not simply move on elsewhere and leave me behind. This also allowed my mom to intervene in any brewing conflict between me and the kids, steer the games so they would always have fun. My mom was always creative and she loved children. But my two cousins who were my age and who I often spend summers with had a nasty habit of turning on each other to the exclusion of the third one, with the other two forging alliances and secret pacts. Those are some of my earliest childhood memories and I'd say one of the happiest. As I grew older I wasn't "running" with my mom behind my back anymore, but the principle was similar. Create games, activities and environment that would draw other kids in and make me- essential. And then, always keep an eye on the dynamic in the group. In elementary school we always had a house full of kids. It helped that I myself had a vivid imagination and could make a toy out of things like a tape recorder- when we recorded our own shows. Then we had the computers. And the VCR. Or we'd go biking  with my dad. And I had the older brother I suspect most of my classmates were envious of. One month, when he borrowed a camera from my cousin me and my friends filmed a murder mystery we've had a blast putting together. Yes, I do things differently and I've had severe limitations, but my childhood was never boring and my parents made it fun and very... normal 

Construction.

It seems nobody thinks of wheelchair users when renovating or expanding a building anymore. The student union building, the heart of the campus the way I see it, is finally undergoing the construction that the powers that be have pushed for for many years. When you build and you demolish, it's bound to get a little uncomfortable. Exits closed down, areas gated off, detours are to be expected right? But every time I'm there, getting in seems like a puzzle and getting out feels like a maze. It's easier if  you can walk down the stairs, jump of the paved path or walk through grass.  When you're in a wheelchair you need a clear, even path and elevators. Elevators in service and a path with clear instructions which way to go, so you don't end up rolling into another closed off area or a dead end.

I used to stop by the Reitz Union all through law school. I got two degrees there, so suffice to say I've been around for a few years. That was my place to grab a hot meal, a cup of coffee and study. While my law school friends avoided the main campus at all cost, it wasn't fun enough or mature for them,  I didn't care. Where else can  you watch a movie or accidentally walk into a comedy show? What other place has inspiring speakers you probably never heard of before? I still go there, on occasion to get a quick bite if it's not out of my way too much, to see what's going on, say  hi to staff I remember and meet up with old alums. I still live and practice in Gainesville and the Reitz was a big part of my student experience. Getting into the building is more complicated that it used to with the main entrance gated off and closed. The signs now instruct you to go through The Welcome Center, an annex on the side of the building with its own sets of elevators. You enter through the parking garage,  go up, you walk on the outside walkway into the Reitz through the Food Court. Sounds simple enough, right? Wrong. The elevators at the Welcome Center get shut down at night often when student programs at the Reitz are still running. It's not getting in I'm concerned about. It's getting out. When I was leaving the building a few weeks ago I noticed that the Food Court entrance was closed. I could get out, but I couldn't get back in to look for a different way. When I got to the Welcome Center elevator it wouldn't let me out on the level I got in. I couldn't go back to alert anybody, because the Food Court door now only opened from the outside and I couldn't get out on the Park Level to leave through the  garage. My only option was the lower level parking at somehow wheeling myself up to the surface. And so I did. I ended up going a very steep car ramp to go up half a lever. With every minute I was more and more afraid that my chair would flip or roll down at a really fast pace. Not to mention that I was in the middle of a car ramp and at any second a vehicle coming up and down could hit me. At the same time students were coming in and out of staircases. Both sides of the building have plenty of these and nobody seems to be too concerned about closing them down for the night. The odd thing, the night manager was locking the Food Court as I left and never warned me I'd be stuck on the other side. And he locks it down. I worked out quite a sweat just getting out of the garage and with most sidewalks I knew gated off or small paths uphill leading nowhere, having to retract quite a bit it took me a while to figure out on which side of the building I was. By the time I got to the Later Gator bus stop it was 2:30, I thought I have missed the last run home. I tried to call a friend, but my phone was dead, I guess I was under ground too long. I think they took down some of the internet routers because my tablet couldn't find the network from across the street, so I couldn't get on Facebook or Skype. Then, at 2:35 a miracle. After rolling around the Reitz for at least an hour trying to find my way, the last bus comes by and I get to go home. And I feel like I won a lottery. It took me a few weeks to consider going back, I didn't want to be in the same situation. I left the movie they were showing there early, so I could leave before the night manager shuts the building again, but he beat me to it. But I know I can get out through the basements that the Reitz, the garage and the Welcome Center share. All I see is corridors and more corridors. Going behind plenty of stored equipment. I guess this isn't really for public access. I'm in some service access area. No information, no arrows, did I turn left or right? At moments like this I really wish I could walk down the stairs. One of the cleaners tells me which way to go and I finally make it out. At the same time people who walk get out without a problem. There's quite a few staircases, not as many elevators. Just like them, I just want to get home.

Take a picture, it will last longer.

My dad has always been passionate about photography. He'd take pictures of us anywhere we went and in any circumstance. We might have been missing other essentials, but you could bet that his camera would never get left behind. Family and friends. Complete strangers. Landmarks and trips I don't even remember. Summer trips. Weddings, holidays, funerals, baptisms, a distant relative being in town, everything deserved to be captured on film. "Take this thing away" was my mom's most common response to my dad pulling his faithful sidekick out of the bag, following by her immediately trying to cover her face with her hands. Posed and surprised photos. The "I'm not dressed for a picture/I need to wash my hair/I have a pimple on my face (I need make up)/Don't you dare take this" pictures. My fathered traveled through America in the 1980's and with the amount of shots he's taken you'd think he worked for National Geographic. Andrew Sutton gave me a task. Find pictures  that will illustrate your book. Of moments and things relevant to you and of your story as you tell it. Budapest and Warsaw. The Peto Institute, elementary school, high school, coming to America. Starting a foundation. My life. Over the last few weeks, I've been asking my parents to go through those moments in time, those blinks and items that we can present between my writing and pick some they think would fit well. Here's a funny thing about pictures. We take them to preserve memories. To reminisce. To capture our life on film as it happens. To give our mind something to trigger pleasant thoughts of the days long gone, when we're old and gray sitting in a rocking chair, as we go through pages of a color faded album. But as I looked through the photos my dad sent, I didn't remember half of these ever taken. Is it even me in some of them? Who are the people who stand behind me and what was the significance of that moment? I look at the few, And I just don't know. There's a lot of pictures, but some of them trigger nothing. How can you preserve a memory if you don't remember?

<<This is my picture at 19. 100 days to the end of high school (and exams) Ball.                   >>This me at 16? 17. At a popular vacation spot called Urle. We'd live  in a small wooden one family unit, and while I loved it in the 80's as a teenager I hated being banished to a place with no indoor bathrooms and nothing to do. This is me with my "get me  out of here, life isn't fair" look. I find it hard to believe how little muscle tone I had and how skinny I was.

In 2004, while I was adjusting to living with a room mate for the first time ever, my parents stayed at the Bambi Motel, a place you could rent my the hour. I remember they had to switch their rooms three times because it was dirty or things did not work, something you really don't concern yourself with if you only need 40 minutes in there. This was also my parents attempt to get me into an electric chair,  a peace of mind measure for them that didn't really work.

In 2004 we decided to treat my new roommate by taking him to Universal Studios. A week or so before school started for us, I think and I remember  he really loved all the roller coasters and  was riding the Dueling Dragons multiple times, a sentiment I did not share

In 2003 we needed a picture for something. I believe this was an attempt of a passport photo. Funny thing, a year later I moved to America and my face got slimmer for a while.

I have no idea.

My family as I remember it. Dad, my brother, his now ex-wife, my dog Sawa- they ended up putting her down 2 years after I moved here, mom

I recognize our old  carpet and couch in the living room

My mom.  Instagramed before instagram

This is an awful picture of me from 2002/03. With graduation looming and no hope in sight I took it pretty hard. A very bad period for me.

I think I was 8 in this, my mom is sporting a very 80's hairdo.

I believe I was 12 or 13 at the time. With my mom's cousins and their nephew who I believe lived in Munich at the time.

 

300

For 299 posts I've given you a glimpse into my life. Is it the whole story? Of course not. It's a random collections of stories as I remember them, opinions as I hold them, dreams and hopes as I dare to speak of them. I wanted you to know what it was like for me. What it must have been for my parents. How my life in Poland looked and what I do with myself these days. My childhood, my adulthood. In some ways I've changed, but it's funny in how many I've stayed exactly the same. Cerebral Palsy- how I refuse for it to define me. How I fight for it to not limit me, but still it does. How I relate to others and how they see me. How I wasn't as independent as I wanted to, so I moved to a new country. How I'm social and recognizable and yet on some levels I get lonely- and I still strive to find my way. This is the ten most popular posts in my blog's history.

Peto: For some reason my thoughts on the Conductive Education method creator Andras Peto is the single most read piece of writing I've published. Does it matter what he did and who he was? Do I ask myself what would Peto do- like some conductors?

Moving to America: My all-American story. What a bold a scary leap it was to move from Poland and yet, the one I felt I had no choice but to take.

Cerebral Palsy stigma- What is it like to have a disability that gets mentioned in American jokes and everybody seems to have feelings about?

The 100th post and 200th post- my previous rundowns.

American Dream is not over: I have hopes and dreams and I'm full of energy. America for me is about making a life for myself, grabbing onto it and fighting for it. Helping others and making a difference

Introducing our new nonprofit: Earlier this year I've launched the Disability Access and Awareness Foundation in Gainesville

Help us find kids with Cerebral Palsy in Gainesville. A few years ago I worked at the Jordan Klausner Foundation, that provided free Conductive Education to Florida children. It was a method that made a lot of kids who are like I was once, mobile. Yet we struggled to get the  message out and I'd get very frustrated

The Gainesville Community forum: City's attempts to make disability part of it's  diversity message

My adventures with Citibank- Have you ever tried speaking to a phone agent?

Mischievous

It's time to admit it my dear Hungarian Conductors. That Disney On Ice poster that disappeared from the one of the doors at the Peto Institute 25 years ago ended up folded in my cabinet. Not that anybody cared or even noticed it being gone, but still.  When I was away for the weekend, the other kids ripped it off and put it there, because, well, they knew I really wanted to have one. Not that it was of any use after, and I felt really guilty about even touching it. I remember the scene vividly. I was walking in my braces and with sticks on Monday morning  with my mom facing me for safety when one of the boys, Feri, who was ambulatory came up to tell me what they had done. My mom didn't understand Hungarian but she knew something was up. So I  translated it for her, limiting my involvement in the whole thing as much as possible. That was the funny thing. I could never lie to her. She would always know when something was up just by looking at me. It was as if she would pierce right through me and see through my soul. I'd always confess anything that was bothering me by volunteering some information and feel relieved right after. But that was the funny thing about Hungary. My mom didn't speak the language, I did. For once she had to rely on me for something. I would talk to somebody and she just waited for me to explain what the conversation was about. The punchline, the story, the criticism. Yes, sometimes a Conductor would come up having something negative to say and it was for me to translate. I remember my mom looking uncomfortable and nervous waiting for me to explain. I had to be there to connect the dots.  I remember even translating jokes about the Soviets that at age of eight I did not understand. In my age group I believe I was  the oldest. The other kids looked up to me, listened to me and  yes, there were times we'd get in trouble. And I think of it with great fondness. It's very easy to think of kids with disabilities as little angels all of the time that do nothing but exercise all day and just lay there without energy. I'd be the first one to say, first and foremost we were children. And kids get into all kids of trouble because that's what kids do. The Peto Institute at times felt like a giant playground. I'd still remember how on weekend when  my parents could not pick me up some boys crawled off their plinths which doubled as our beds and started to wrestle each other on the floor. We've had our secrets, our schemes and our dealings. Oh yes... Life was much simpler then.

Gotta have my weekends

I'm striving to find balance in my life. There used to be a time when I would use Saturday and Sunday doing research or drafting for an accidental client, think about what I need to next or stress about my non profit work and all the ways I have to make things come together. My friends would mock me that me and my phone have become inseparable.  The blinking light in my pocket always forced me to pull my BlackBerry out and look at the screen. It wasn't so much an addiction as a great deal of stress. The fear of being behind on my work, but also of whatever bad news I have to read about this time. Concern for my friends who may be in trouble, but also clients who don't understand some things and need explanations and also opposing attorneys who feel they need to play tough when talking to me. I can wind myself up and stress about everything that may happen and that's the way I've been ever since I was a child. When I was in school, I'd wake up in the middle of the night with a nightmare of a test I didn't prepare for or an assignment I've forgotten. A lot of times, my worrying mind would worry about something- not even something specific- just this nagging feeling I'd have that there's something I'm forgetting. Yes, I've always put myself  under a great deal of stress, but it's not like the outside world is making it easy on me. I've realized that I may need to rethink this when I was watching a play on my birthday but still looking on my phone to make sure everyone and everything was fine. A friend of mine was a stage manager for the production and she noticed it, jokingly pointing it out. And she was right. If I constantly stress, think and worry- I never rest. Yes, I can't just turn off my brain. And yes, there are people and things I need to get to. But after a really long email exchange with a client on a Friday night who felt they can hire me and control me, I've said to myself, I don't work on weekends. This ends now. It may be that I'm still overjoyed by the amazing performances of the cast of Avenue Q. Something happened to me recently, but I feel happy again- very creative and inspired. So I told myself- this type of crazy behavior ends now. Yes, I need money. But I also need sanity. And friends I can actually enjoy spending time with. Whatever it is- it can way 'till Monday. And yes, I care too much. A lot of my projects feel very personal to me, with my hopes and dreams connected to them. But at some point I've got to find some perspective or it will drive me insane. And what better place to do it in Gainesville? Where else can I get a friend who says: I've written a play with a character based on you. Would you be in my show? Or have a brain storming session  over drinks about an original musical involving puppets. It could be the heatwave but it feels like life is good.

Sunday night joy.

During my first year of law school I would only explore Gainesville's nightlife with my classmates.  We went together, we left together. We sat in our own little circle and enjoy our drinks separated from the rest of the crowd. God forbid we would interact with the locals too much. When we were ready to leave, we'd bar-hop to a different place but the routine was pretty much the same. At first I enjoyed it- it gave me a sense that I belonged somewhere, I was part of a group and I mattered. I quickly discovered how limiting this has been all along. How I enjoy meeting new people, people that are different from me. How I can only grow, learn and appreciate life if I listen. How other people have other experiences, perspectives, thoughts and feelings and how inspired I can get if I don't shut off from them. I suppose, some ever so  slightly part of it might have had something to do with the fact that as law students we felt that we were educated, sophisticated and all together special. We were all set to join big law firms, have amazing careers and make gazillions of dollars. I'd be first to admit that I felt like I was something else back then. I came here having already learnt a law degree. From Europe. Europe! What did these kids know? I needed an attitude adjustment and life gave me plenty.

This summer the local theatre downtown decided to produce one of the biggest Broadway sensations of the last decade- Avenue Q. I don't remember a local venue attempting to put on a show that is so risque, adult, big and famous, although the traveling version of the musical did visit Gainesville a few years ago. Hippodrome Theatre was mostly known for its family friendly jukebox musicals that would entertain entire generations with the selections of well known 50's and 60's hits. Fun and well acted, but very safe. So when they announced that the show this year would indeed be Avenue Q  we all wondered how it would go. It was a huge success, it got extended multiple times and the cast combined Gainesville alums with visiting actors from places like New York as leads. The out of towners were very gracious when interacting with locals and some of them became quite popular. I'd hear stories of their sightings around town- where they went and what they did. Gainesville was undoubtedly a small town from them, a place they were just passing through. Yet they were stuck here for three months. I live next door to the theatre, I've got to interact with a bunch of them to some degree. They went to some of the same places I'd go to, between  drinks and conversations I grew fond of them. I saw their show three times. I appreciated their art, their work and their dedication. They gave me that amazing birthday surprise. I gave them a few of my own. But a lot of times when I was out at a bar I'd see them sitting in a group, sometimes not even talking to each other. And that reminded me what it was like when I was in law school and Gainesville was the strange foreign land we were exploring. I wanted to do something for them. Give them a great experience that they would remember. An experience we could all share. To just have fun, blow some steam and perhaps meet each other as people. And perhaps as they look back at their travels, Gainesville can stand out a bit. My idea was simple. Let's honor these people and what they have done. And give them an outlet. Sunday was their show. I'm sure they were exhausted from doing two back to back performances, still I wanted to make the night count. The owner of a local Piano Bar is a friend of mine. As a musician and entertainer himself he can entertain  the crowds, he can do anything. And in the sea of establishments in Gainesville this is one of the few places that maintain some class and are fun to go to. It's usually closed on Sunday, but I asked Brad the owner to keep it open, so I can invite everyone from the show. He likes to give me the credit but he didn't need much convincing. He ended up playing the piano for the next three hours doing what turned into a live karaoke party. The actors, the crew, were drinking, singing, requesting songs, getting on stage, getting others on stage, having fun, grabbing the spotlight. They deserved it. And it felt like a very moving experience that I not only witnessed, but was made part of. And they were thanking me for getting them together and making it happen. Most of them were there- of all ages and backgrounds, including the director, and they all celebrated together. At some point of the night any pretense, attitude or guard we may have had up just dropped and we've had an amazing, genuine, human experience. I was about to face a dreadful Monday. A lot of legal issues that are not pleasant to handle and people who make my life harder. But it was the night before and I was caught in the moment.

 The Bar has a mirror above the pianos on which the performers usually write the phrase of the night: Three words that will set the theme. The stage manager wrote out ONLY FOR NOW, which is a quote from the play. For some it signifies that this is the end. For me it highlights the transient nature of Gainesville. This is what life taught me here. To let people and things go and enjoy those little moments in life when they are still around. And those moments of pure joy give me just enough wonder and inspiration to make it to the next day and the next. It's not about life answers, but for now, I don't seek them. Sunday night I experienced something great with people I barely knew and for now, for then, for that moment it was all I could ask for. Thank you.

The title.

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.
"Never, never quit: My Conductive Education. Pieces of mind, memories and opinions From the desk of Ralph Strzałkowski, Esq. Lawyer on Wheels".

Everybody says "I love you".

"I love you mom". "I love you dad", "I love you kids". Do you remember those American sitcoms of the 1980's where everybody declared how day felt about each other at least three times an episode? As I would watch those shows with my family in Poland when I was growing up, those were the bits that we always found silly and a little over the top. We would rarely say something like that and it felt reserved for special occasions. It's not that I didn't know that my parents loved me. I just didn't need to hear it. If anything I always thought of my parents as very loving, extremely giving people. There's something about saying it and having it said to me that always felt embarrassing. Like a distant aunt at a birthday party trying to hug you and pinch your cheeks while you're trying to get away. We also never had a need to hug. Everybody hugs on TV right after they talk about their feelings. It wasn't my experience. It wasn't how we were raised. Those forms of expression of emotions were foreign to me and quite uncomfortable. I wouldn't know how to behave and I certainly didn't find comfort in it. Americans I find, are different in that respect. They "Love" everything. They say "I love" to people with the same ease they "love" the new peach ice cream flavor or the movie they saw last night. I often think, what is the value of the words you use every time you say good bye? "Love you" means I had fun hanging out with you, let's do it again. If you don't save special words for special occasions, don't they lose all meaning? And did I tell you that Americans hug? It isn't just TV. They hug plenty in real life. I still don't know how I feel about it and I think it brings them more comfort that it ever would to me. But I don't pull away from it- I recognize it as something that's culturally significant. I've been hugged  by people on the street. I've been stopped by people with a paper board that said "free hugs". I have a friend who calls himself an "excellent hugger". And I have known people who would let me go until they stopped me for a few minutes and gave me a big hug and would not let go until they were done as if they were taming a wild animal. Some of these experiences were not quite bad. And have I mentioned the word "friend"? This has to be the single most overused word in American-English. Everybody you spend time with or know ever so slightly is a friend. By contrast, the Polish word "przyjaciel", implies emotional closeness and fondness and isn't thrown around easily. It's reserved for those you're closest to.  For most people I know, but don't feel connected to I use the word "znajomy". I guess it's the equivalent of the English term Acquaintance - but there's some coldness, a distance that the English word implies that makes it sound almost technical. It's not something I would say to a person or with them sitting there. It would feel like I was making a point about the nature of our relationship, separating them from the other people I know. These are my friends and this is an acquaintance. It feels that language just like anything else is a product of culture. We're different in expressing feelings and ideas but it doesn't mean we're not passionate people. I grew up with the notion that using the "big words" is a bit cheesy but let me tell you one thing. When my dad was being taken away by an ambulance back home and my family kept it a secret from me while I was taking my bar exam so I wouldn't be upset and distracted my brother chased it down the street because at that moment all he wanted to do is tell my father how much he loved him.