Here's a bit of a good news: The bus system in Gainesville, a Florida city where I've lived since I moved to the States from Poland now offers service on most holidays. To someone who drives or even walks this might not be a big deal, but to me being able to get out of my apartment and have an adventure has always been something extraordinary. Seeing empty parking spaces, with most of my favorite shops closed and friends leaving town, watching neighbors rushing, having somewhere to go is always bad enough. My independence and my self assurance were fueled by my ability to experience things. This is why it was in America that I finally felt free. I could get on a bus, go anywhere and experience the world. Yet around holidays- bee it Veteran's Day, Martin Luther King Day or Christmas I'd be stuck again. In my apartment, by myself, waiting for the ordeal to be over. Sure, I'd tell myself that it didn't matter. That I can watch TV, catch up on my reading or order something extremely unhealthy, typically the night before- because some of the delivery services celebrate too. But no more. No more wondering if I have enough food ordered in to last me a weekend, no more binge watching bad TV or eating junk. No more thinking I need to leave a New Year's Eve party early and get a ride from a kind stranger. Now I can just get on a bus in the morning. That empowered feeling that I've had for as long as I lived here comes me having choices. And it's usually around Christmas that I'm reminded how limited I really am. In transportation, in socializing, in human experience - in ability. And I'm reminded, how much in actuality I have to rely on other people. On that entire set up that must be in place and work like a well oiled machine for someone like me to stay independent. And those are some of the things I don't like thinking about. I want to be my own man. A few weeks ago, I've had a discussion with some of my Board members. They didn't quite understand the connection I was making between feeling good about myself and being able to do things for myself. True, it might be anecdotal - but I think back to Christmas in 2008, the first time the concept of holidays in the city really dawned on me, and the first year I didn't go anywhere or visit with anyone. I'm an intelligent guy- I can reason with myself and say it's only a day, and a day doesn't matter. I'll wake up in the morning and it will be over. I had a plate of Publix sugar orange and blue frosted cookies and a season worth of "Sarah Connor Chronicles" to stream online. Yet, I felt isolated, alone and stuck and I couldn't shake that feeling. It was also at a time where I had a reasonably nice apartment in the middle of nowhere. If I get the blues today, at least I can roll around downtown. It's funny. I was here where there the buses weren't running on Sundays. I'd mostly stay home or study. Saturday bus used to finish at 5. Now we have holiday service. In a few years, I'm sure it will be running on Thanksgiving and Christmas. Gainesville is growing and I can get that feeling again. I can stay, I can go, I get to be my own person.
Tuesday, November 24, 2015
Thursday, November 19, 2015
Sunday, November 8, 2015
Here's a funny thing about push handles- I never wanted them on my chair. My previous one didn't have them and if I had my way- the new one wouldn't have them as well. Luckily, on the wheels I just retired last week it wasn't even an option. I've had a "lowback" while this one is a full-back. When I picked the specs eleven years ago it was intentional and I did it for a number of reasons. I was hoping having a smaller area to lean against would improve my posture, strengthen my back muscles and force me to sit up more. Unfortunately, as I learned to slide down from it it didn't quite work. I also hoped it would look more like an active, mobility device and be less "wheelchairy" as in something other people push around. Because having other people easily pushing me was the last thing I wanted to happen. It doesn't mean that on some occasions it wouldn't be efficient if they did or that there weren't times when I actually needed help. To me, someone coming up to push me, often just doing it without asking, meant overriding my independence. I didn't want to equip my chair with a tool giving other people this power. If the bars are just there, they look so inviting, right? On one level in interfered with my self image. To me, having a wheelchair that other people get to push is in direct conflict with the image I was trying to project. It was becoming more like one of those things with wheels you see in hospitals I've dreaded on my life. On another level I feared that if I gave others an easy option to push me, I'd rely on it way to often. Not having that to fall back on made me more driven, able and resourceful. I was also very happy with my Varilite custom upgrade back. So when my parents were picking out my new chair, this is a topic we discussed at great length, back and forth, back and forth. To her, bars serve a utilitarian purpose. If someone needs to push me, they should be there. I'm not quite sure who she imagined doing that and why. I don't think she can truly understand what it means to me and why I oppose it. I guess, what others see simply as equipment is more than that to me, and I don't even know how to explain it. My parents found a very nice, high end wheelchair, so I gave in on that point. I still wish the back was lower, you can hardly see me sitting in0 it from behind. And I wish I could take those handles off. Yes, you can fold them a bit, but I know they're there. but at least I have a white and shiny Tilite chair!
Monday, November 2, 2015
I've had a surprise coming in earlier this week. A new set of wheels (and a shiny, white frame). My parents decided to upgrade my ride, stuck it a box and sent it through UPS. It took it an extra day or two to get here, because the delivery service after reading the description of "invalid carriage, not mechanically propelled", decided to clear it through the FDA. I guess a wheelchair still primarily is a medical device, rather than a sit with four wheels, used to move it around. It was quite stressful waiting for it to arrive while I was arguing a motion on a case in Palm City and working on putting together a fundraiser in November. I must say I'm really excited. It's only my second day in it, but it's clean, bright, it has that feeling of "new". It's like a toy, and at the same time it feels very stylish. I'm changing brands. This time - we went American. I'm replacing my Swiss Kuschall with a TiLite. I never thought a chair can make me feel this good and fashionable, but it did. Now I feel I need to make a little more effort dressing up just to match. But that's the thing. I always said a wheelchair can be a cool and stylish accessory. And this is mine. I've used my Kuschall for eleven years. I've been a fan of the brand for about fifteen. It's now torn, scratched, beaten down and patched up in places and it looks miserable. For the last few months I was practically sitting on the bottom frame support bar. 11 years ago Kuschall was my brand of choice, the one I requested by name as this is what I used in Poland. The City of Gainesville replaced my other one after a city bus run me over while I was crossing the street. And for the longest time I loved the look, the feel and the color as it became the symbol of my independence.
But I've had some problems with it. It's no longer widely offered to individual customers in the United States. Finding replacement parts was always a challenge as it used its own irregular sized bolts and screws. Having things fixed was expensive and time consuming as everything had to be ordered and shipped somewhere. Rule of thumb- if you live in the United States, it might not be a bad idea to get a US build chair. It's a high end brand- I love it. It maneuvers effortlessly, it's smooth and fast. It will take a few days to figure out the mechanics of steering it, as the physics is a little different. It's lighter, it gives me less resistance so I need to hold it back more. Otherwise I run into things.
I only wish I've made an unboxing video. I'm proud to say I unpacked it all myself. The box looked so tiny that I thought my parents got the size wrong, how could it possibly fit? Then I had to get out of all the bubble wrap and what seemed to be sticky food wrap tied around the frame like bandages on a mummy. It has a few pockets for storage and I know it will serve me well. But most of all, it's a new chair for a new chapter.