Friday, October 24, 2014

A change of perspectiive

I know what it's like to have parents who would have done anything to get me to walk. There's nothing that we wouldn't try, nowhere we wouldn't have done. It seemed like Cerebral Palsy couldn't possibly had been a match to the passion and determination of my parents. Never giving up, never standing back. I recognize match of the same drive in some of the parents of the younger kids I interact with. The "we can beat this" and  "all hands on deck" approach. But then, not to discourage anyone- I think they're fairly new to this. Not to say their enthusiasm will fade, but it may change and gravitate toward other things over time. My perspective is different of course, because I'm not a parent determined to help a child. To me Cerebral Palsy is not the worst thing that could happen. It's something that I got used to,  for the lack of a better word- something that is a part of me to the extent that I wouldn't be able to imagine my life otherwise. I don't want to "get it out  of me" so to say at all cost. It's not out of despair, or resignation or laziness. I think it may be part of a natural process that many CP parents go through. We were fighting it till I was about 16. Conductive Education in Warsaw, Bobbath concept, bouncy balls and mattresses, exercising and physiotherapy in Warsaw. Biking, horse riding, walking in braces every day, all week long, every week pushing myself physically in one way or another. But then, I went to high school- and all of a sudden  we became more and more interested in things like how do I get around and where can I go. My father, the same person that had me stretching, kicking, doing sit ups in every spare moment was now pouring concrete all over our apartment complex so I could get on and off the sidewalk and building ramps. Because fighting the good fight is good, but then you need to go and live in the real world. Don't get me wrong- hats off to the parents of seven year  olds who are on the forefront of every research bit, every medical theory and every ounce of hope- I just think the most difficult transitions are still ahead of them. I'd say many things were easier when I was seven. My parents could have just grabbed and pull me up with my arm. Of course, when people ask me about my disability, my history, my life story I gladly speak. And if I can give hope and inspire change I will always do so, but I notice the same kind of issues I've had when the Peto community was trying to get me involved. They were seeing me as one of them, but I really wasn't. I'm not a therapist, I'm not a parent, I'm not an educator (on things other than my life).  In some respects it feels like it's not my fight- not anymore, not like it used to. It's something I was involved with or something that I happened to experience a lifetime ago. My perspective is different. Rather than the limiting perspective of CP or "beating it" through CE I'm more interested in disability in general. In what people know, what they do, how active they are, how the public sees them. Issues that are common to many of the mobility impairing conditions. I care about also partially because it concerns me, but it concerns all of us. That's why I started the Florida Disability Access and Awareness Foundation- because I care about the image of the disability community as a whole. When I'm faced with a flight of stairs it doesn't matter what my diagnosis is, nor does the guy who tries to give a dollar to me for being in a wheelchair. The bus driver if he rolls his eyes and passes me by doesn't give me props for being a well adjusted with my spastic quadriplegia. That's why I'm doing this now. I guess your priorities depend on who you are and where you are in life But I do think that we are on the brink of something great. FDAAF has three new projects in the pipeline and I'm incredibly excited. Go ahead, feel free to ask how you can join.

Monday, October 20, 2014

Spare parts

Recently I have reached out to a friend of mine who now lives in Hawaii. Funny how time flies- last time we spent time together was seven years ago, when we loaded my wheelchair up on somebody's  pick up truck and decided to watch a movie in a group at his house, an impromptu gathering after the bars have closed. Of course I remember that night for a completely different reason. It was when my sit cushion from my chair went missing right after we gave a couple of homeless people a ride to the Burger King on the way. As I told the police officer the next day, no I didn't see them taking it, but they were sitting right next to my wheelchair, the cushion was in fact missing and it would take some really strong wind to blow it off the back of a pick up, although- I suppose- anything is possible. What was really shocking to him is the price for a replacement I got my wheelchair's distributor. A sponge in a cover with an anti-slip rubber cover, how much can that be? 20 dollars? Try 120 if I remember correctly. The problem with having a 4400 dollar wheelchair (in 2005) was always that fixing it and replacing parts was always so expensive. The chair was of course bought by the city of Gainesville as part of a settlement after an accident in which a bus run over my old one from the same manufacturer. I had an older model that was a show piece, so for that reason it was slightly used and marked down. The one they replaced it with was the latest it-thing Kuschall had to offer and it even came with a $300 clock mounted above the front wheel that kept popping out. This was the one element the kind wheelchair makers in Switzerland were willing to replace for free. Guess what- the original sideguards- the plastic things that go over the wheel to protect my sleeves but don't really lock into anything- between all the loading and unloading I lost them within the first six months. This was something we were able to reproduce in Poland. And that's a good thing. Because I didn't feel comfortable riding around with a part worth $160. And every time you board a taxi  or a plane you're afraid you will  leave it behind. And guess what- I did when we flew to Munich. My chair has non-standard screw and bolts. For the longest time I had a screw sticking out of my antitipper, just so  I would have anything there. A lot of times bike shops couldn't help me and I've had replacements that were too big, too awkward or barely held. To make it really work I'd have to order the original parts from Switzerland. And when I went back to Poland a year ago my dad felt that some parts were on the brink of breaking and needed to be changed. A custom order from Kuschall, the new set found me after I went back to America. I guess people don't really think of wheelchairs as things that are custom built, expensive and even more pricey to maintain. Many people when they imagine one, they think of those big bulky standard hospital units that you fold and put away. It's weird to think of a wheelchair as investment, like a car or a motorcycle, maybe because of the stigma of sickness and poverty that is often attached to it. But wheelchairs can be nice, just like anything else in life, and the better yours is the better is the quality of life in it. I just wish it was easier to fix.

Wednesday, October 15, 2014

Those darn knees

"If only you could fully extend your legs, if it wasn't for those darn knees"- my mom sighed a few times when massaging my legs.. And she's right - contractures in my legs have always made it difficult to walk, stand or even take go up a flight of stairs. My legs would just get tired quickly with gravity almost pinning me down to the ground, making me exhausted. Try as I might, I could never get my knee to go beyond the 100 degree angle, it's as if they're physically blocked. Through the years , my parents had hoped to physically loosen them and give me more movement. The added benefit of being in a cast waste down- your legs are forced straight for a few months and after a while everything lets go. I've even seen kids put in a cast without a surgery to recover from for that very reason. After a while the body gets used to the new position and stops fighting it. A boy I shared a room at the Children's Health Center in Warsaw for a few weeks had it done and I'd be lying if I said that my parents never considered it, however briefly. It was an effect similar to wearing leg braces every day. After a (longer) while all the tension every day. When you released the lock that held the brace locked straight, my legs would go numb, and I'd literally feel weak in the knees. For a few weeks we even tried "nighttime braces"- a lighter construction covered in fabric. I found it very difficult to sleep in thee things given that I was side sleeper. Try getting to school in the morning after a thing like that. My mom was always envious of kids who had hyperextention. Their knees locked straight, if not a little over. A bit of an opposite of my condition they had some problems kneeling, crawling and sitting down. But it was very easy assisting them to walk up the stairs or even go a larger distance. You could just have them stand against something and they would never get tired. When I was a child, there wasn't a whole lot of things you could say were "wrong" with me or different, but my right hand and knees were dead giveaways. I'd would have been easier if we just had it fixed somehow. I thought about all the things you can do if you can properly stand when I saw this girl at the store last Sunday. She was walking with a set of Peto style sticks, her legs straight, never bending, wobbling from side to side, drawing the step from the hip. She wasn't wearing a brace of any kind, her legs were just naturally locked in that position. I don't want to speculate as to whether she was in fact a pupil of the Conductive Education method and I could tell she had some type of neuromuscular disability- you often see it in the eyes or the tension in the face- but I would not venture a guess on whether or not that was actually CP. (My dad would often assume that a lot of the kids with disabilities had it, when in fact they've struggled with different types of brain injury. Her walk wasn't fast nor particularly majestic. Although she was making her steps slowly but surely I was a bit surprised. She didn't have the added weight of a metal braces nor the discomfort of metal rods going into the shoe. I always thought that if my legs could get that straight I'd move with more ease. But I guess moving your entire leg by transferring your body balance from left to right is difficult regardless.

My parents were entertaining the possibility of me having a knee surgery but then decided against it. I was revisiting this idea upon my planned arrival in Warsaw in 2008, but fate (and immigration) intervened. What can I say, the older I get the more I can appreciate the idea of having more movement.

Monday, October 13, 2014

Between A and B

I must say it. Some of the new bus drives are lost when it comes to getting a wheelchair on board. Either they don't know how to come close enough to the sidewalk for the lift to reach it, or don't know how to power and operate the ones that are by the back door. Both things happened to me Friday, as I was trying to get home from a campus movie. First, with Later Gator A (Later Gators are night buses that go through UF connecting different parts of the city with downtown to make sure that often drunk students get home safely)- that was the bus that I needed. The driver saw me sitting by the stop but didn't pull any closer. He asked me what bus I wanted, and after I said the name of his route, he nodded but drove away without a word. Even if he started to unload his lift right there, I would have to jump off the sidewalk to get to him through the bike lane. OK, I thought- I guess I have to wait for the next one. But for a good twenty minutes, nothing was happening. A concerned driver on the regular daytime bus saw me, opened his door and told me that all the "A"'s are held up downtown for some reason and I'd be  better off if I caught the B. It also went downtown, although it took a different route and was less frequent. It stopped round the corner (and then across the street) so I decided to give it a go. After all it was supposed to be here sooner. A lady who just got off work and just wanted to get home as soon as possible joined me in the move. We tried to figure out where the buses were on the GPS, but not all of them were showing and we kept getting something ridiculous like 28 and 38 minutes away. As we were sitting waiting for the B as instructed by the other driver, We saw two "A"'s going by from behind the corner. "It figures"- I thought- "that they would come as soon as we left. The lady tried to make a run for it and she made the bus wait, but I can't roll that fast so I just told them to go. Still, she decided to stay a bit and wait for the "B" with me. We waited quite a bit, but nothing was coming. If it doesn't come in the next few minutes, we're going back, we agreed. I have a feeling it will come now- I said. We waited a little longer and the "B" finally came. But the driver didn't know how to get the lift powered. He told me it was broken and he called it in as such, but it's not that it was stuck, he just didn't know how to turn it on and there's a thing that he should have done in the front. But I guess it's easier to say, that something is broken. "There's the A now, go catch it" he said and he was apparently very surprised that I was rolling down the siidewalk instead of going straight at it. Well, I'm sorry I have have to get to an actual ramp at the end and not just jump the curb. I didn't get to the "A" in time of course, but I decided to wait for the next one. I guess we were waiting for a really long time, because the city route driver pulled up again. "What are you doing here?"- he said- "I told you to go wait over there". Go here, go there, wait, move, a good hour was lost following tall he good advice how to get home sooner. This time I decided to stay put and just wait for the bus. And guess what. It came not long after. And to think I left the film early to beat the traffic and do some work. As I was getting home, my driver told me that two people were hit by a car earlier that night causing detours and delays as they were running in the street.

Wednesday, October 8, 2014

Dirty/Tiny/Bathroom

A few weeks ago my Foundation has its regular board meeting in the back of one Gainesville's most popular cafes. Most of the time we choose to meet informally to strategize  and catch up over a warm beverage. The bathroom area is  locked and shared by all the businesses in the building. Every  establishment has a number  of keys to give to its patron, and they're often attached to large spoons or things like a french press, so the customers wouldn't lose it. When I saw one of my directors returning with appeared to be the restroom key dangling from the end of a long metal instrument I noted that I don't like having to use it here. The cabin is small, the door opens inwards, it's hard for me to get situated- I explained. That can't be true-  my director insisted- they wouldn't be allowed to do that. - Go ahead check it- I challenged him while taking a sip of my large drip with cream- Tell me how it goes!.  It's been many years since I was there last, I thought, maybe I'm wrong now, maybe something changed.  I used to struggle there quite a bit over the years and I knew what I remembered. But yet, I was curious. As he returned he said- You were right- I really don't know how they can get away with this! Well, that's one of the reasons why we have this disability nonprofit. To raise awareness and promote change. And we have our work cut out for us. As much  as I like Maude's, adore people who work there and I strongly believe they have what quite possibly is the best coffee in town, here's where the problem is. If the door opens inwards and the cabin is not very deep, there's not enough room for me to get inside with my wheelchair and close it. If  I could only get behind the door I'd be a different story, but there's not enough space between the toilet and the edge when it's open. I'm left with two options and I tried them both. The door remind open and the wheelchair faces me sticking out. People walking by can easily see me, and even though there isn't a whole lot of traffic, just the thought that they could, that I have no privacy makes the experience much worse. Those are the moments when you really don't need to have or think about the possibility of having an audience. Alternatively I tried grabbing my wheelchair as I sat on the toilet seat, flipping it at an angle and pull it with my armsso that I could fit it in  like an oversized suitcase. I would then push the door to close, but with no way of locking I didn't feel I had any privacy either. You just now that able-bodied or not, people always tend to check the wheelchair cabin first. I also remember a few years ago, when I was at the cafe on a Saturday or Sunday- I may have been studying for the Bar or some other exam- I had a pretty unfortunate experience in that very bathroom- if getting in and out wasn't problematic enough. I remember trying to go in and discovering a pretty foul smell. As if something came in there and died. There were newspapers on the floor, I didn't want to investigate any further. As I complained to the person at the counter I've heard that yes, they were aware of the problem and how bad it is, but there was nothing they could do. The property owner cleans the premises on the weekdays. I felt their pain but I needed the restroom.  It was upsetting that nobody realized that with only one wheelchair cabin available they should have done whatever was in their power to make it functional. After all they were fine selling me coffee, but couldn't be bothered to deal with me later. I felt at that very moment that we are years away from understanding and wheelchair inclusion. And it hurts when nobody cares. I ended up crossing over to Starbucks, thankfully they had a restroom I could use. But hey, did I tell you about that coffee?

Sunday, October 5, 2014

You can't eat paper

Originally I was about to write on a completely different topic, but I felt so inspired as I left my bus with a bag full of groceries today, that I couldn't wait to tell this story, It's funny how often bus drivers, strangers on the street, the extravagant and the homeless push me to take a second look. To think about things I would have never thought about by myself and to see and appreciate their perspective. It's those random exchanges that make me appreciate who I am, where I am and what I'm given even more. And I can't help but shed layers and layers of sarcasm and thick skin every time I'm faced with a deeply moving true story. And as I was unloading my groceries from my wheelchair and stocking my fridge I couldn't wait to get to my computer and tell this story, thinking of words and structure I would use as I was putting my milk, bagels and cold cuts away. Because it made me feel good. And it made me smile. And me think about how I've been stressing and pushing myself to succeed lately as I saw in a new light. "Do you know if there is a good steak in this city? That gives you a really big piece of meat? I've been to Outback  but their portions are tiny"- he said. It was close to six pm, his last run, dinner time and he was hungry. "I heard Mark's Prime [ a locally owned restaurant] is pretty good, I've never been but my friends were going on and on about how big and juicy their steaks are, but my understanding is they are pretty expensive". "I don't care"- the driver said- "I'm really hungry. He then told me the grew up poor, often starving, so today he always makes sure that he treats himself to a good meal and he spares no expense. It reminded me a bit about how my mother always reminds to go and eat something good and in that way my family makes sure that I'm well taken care of. But it's what he said next that moved me. "You can't eat paper" he said and few words ever rung so true. It's not about the money, but what we do with it. And I know we all know that, but sometimes we just get so caught up to have more, to have something that we often forget what it's all for. Pushing harder only leads to frustration and a feeling of isolation if we don't see forest for the trees. Have perspective. Have balance. And have a good meal.

Wednesday, October 1, 2014

Just one of those days....

On Friday I decided to go to the Post Office, only to discover that it wasn't accepting credit cards  that day and I never carry cash. I had to send out an package for my brother, something I have completely forgotten about, although my mother was getting on my case about it for the last few weeks so I would remember. The downtown location in my area has closed a few years ago, so getting things shipped or picked up these days is always a bus ride away. I get there and I see a sign that says "Cash Only", but I still go in as if there was a chance that it was a joke or there was something we could do to send it off. I guess I should have gone to another post office? Nope. The lady assures me that it's a system wide problem and no location takes credit cards today. Well, I better find an ATM. Apparently there's one down the block. I see a small grocery store with an ATM  sign made out of paper in the window. I go in. At this time I have about 15 minutes to come back with money and send it off, I'm good, right? No. As I open the narrow door that the clerk helps me through  and I ask for him to point me to the ATM I hear that they haven't had one in there in months. Why is there a sign? Apparently it wasn't lit up. Not something you could really see at four in the afternoon. But then if I was able to get to a teller machine it wouldn't have done much difference. When I finally find one, I discovered that Friday was also the day that my bank decided to shut down my student ID that I have been using as an ATM card for as long as I lived in Gainesville. A quick conversation with a Wells Fargo agent revealed that nobody knows who and why has done it, but it couldn't be undone. I had no access to my account, because although I also have a Wells Fargo credit card, unlike pretty much every other card I have I can't change my PIN either online or by phone without visiting my bank. And my bank closes at 4 and is in a different part of town. As I crossing University Avenue, which is about the busiest street in Gainesville and I saw all the cars waiting for me I've gotten incredibly tense and shaky and I had a bit of a panic attack. But then I decided I  didn't have time for this, to give into this fear, I needed to work through it and get to the other side of the street. But I spoke too soon. As I was rolling on my merry way, I saw a car blocking my sidewalk access. I didn't know if it was parked or waiting to merge into traffic, as it was put in front of an intersection. I waited a minute or two, no motion, so I decided it was safe to go behind it. Big mistake. As soon as I did, a golf cart started approaching from the side of the sidewalk I wanted to get onto. To give it enough room to use the ramp, the car started to back up, right towards me. The lady in the golf cart and I both started to scream, because the driver clearly didn't see me. And as she apologized, that's what she said. I was behind and she didn't see. Another close call and I started to shake for a minute. I decided I didn't have time to contemplate my near death experience. Yes, something could have happened, but thankfully it didn't. And I don't want to play it down. But sometimes, things just happen and I'm overjoyed when I get through them in one piece. With my day pretty much upset, I decided to stop at Dunkin Donuts. If everything today is going not according to plan I might as well get a meal I didn't plan either. Once again, it's pumpkin season, and a pumpkin iced coffee can sooth my mood. It's that time of the year again. Halloween and Thanksgiving are coming and I stopped for a minute to appreciate the change of seasons, that you really don't see in Florida. With a warm sandwich and cool, sweet coffee, all the troubles of the day seemed to melt away. I was regrouping, rethinking taking a minute and soon I was ready to face the world again. And that's what life is about.