As you know, I was really bummed that I lost my insurance and with it went my wheelchair. For quite some time, I searched for one that would be a good replacement – and I was going to settle and just get a ‘hospital’ style wheelchair – you know – the big, ugly, heavy, navy blue plastic ones. The problem with these sorts of chairs, they don’t fit in my car (not even the trunk) and I can’t pick them up to load/move them. The last time I picked up my old wheelchair, I dislocated my shoulder. So, I was unhappy and chairless.
I remembered watching the Discovery Health Channel EDS clip with the Martial Arts instructor, Alberto Friedmann – and in it, he had a wheelchair that was really lightweight (or looked it), with removable wheels. I thought to myself, ‘that would be perfect!’ – but I had no idea what kind of chair it was. So, I called Alberto. He was really nice, and though it was a strange call, he obliged me and gave me all the info on his two wheelchairs. He had a Quickie GTX and a Tilite wheelchair. He said the Quikies were really nice, quality chairs – and a little bit cheaper than the Tilites. His GTX folded up really small, would fit in an overhead bin of an airplane. But – he said – if I would have a problem lifting the chair, the Tilites were even lighter than the Quikies. So, it was settled. I would look into both. I mean, how much was the price difference? Well, it hit me hard. Not the price difference, but the price – period. Most of the chairs were anywhere from $1,000-$4,000 dollars, some even more. Yikes! No job, no income, disabled – no money coming in. I wasn’t going to be able to afford a nice wheelchair. Heck – I couldn’t afford a new ‘ugly’ hospital chair (they were between $500-$1,000!). What would I do?
I turned to Craigslist. And I waited. And waited. And then logged in to see ‘Quikie GP Swingaway Youth/Young Adult Wheelchair.’ The photos were too good to be true! The wheelchair was very similar to the ones I was looking at on the web – and had lots of added features – they had purchased a lot of accessories and parts that made the wheelchair even more functional. And – the price – $50. Five-zero. What?! I started emailing with the owner and chatting about all the things they added to the chair. When they purchased it new, the chair and all parts came to a total of $3,400!!! But, what did ‘youth’ mean and would I fit into it?
I talked at length with the woman who was selling the chair. The wheelchair belonged to her daughter, and she was needing a different kind of chair – something even fancier. The girl was in her early twenties and had this chair for all of her late teen years. She has spina bifida and spends her waking hours in a wheelchair. She has no function in her legs. None. The family was just looking for someone to take the chair who would really get good use out of it – and they were only asking $50 to just help pay for some more medicine for the girl. She was recovering from a stage 4 pressure ulcer. (I had to google that, and was really saddened and horrified – it looks SO painful!) I went and checked the chair out – it was perfect. It fit like a glove, just needed a few minor repairs, and was right in the budget! I would just need to buy a cushion (and nothing too fancy). I was so touched by these people and so overjoyed. I got a chair, to meet a really nice couple, and I got a nice reminder that I don’t have it so bad – I still have legs that work. Though they cause me pain, I can still get around. Though I can’t easily walk, whether from the joints or the POTS, I can still walk. I will make it. Today is only today, and tomorrow is a new day.
I am more mobile with my new wheelchair. I can do things like shop for the day with my mom, get groceries when my POTS is out of control, and get through the airports with ease. The chair fits in my trunk, and when it is taken apart, it is light enough for me to pick up – it can still be awkward, but so far I haven’t dislocated anything loading it into the car! Hooray! For those of you who have the money and need a wheelchair, I really recommend looking into the Quickie and Tilite brands. For those of you who have good insurance, you could try those as well. For those of you like me, just keep on looking and don’t give up. You never know what will pop up on Craigslist, what stories you will hear, and what you will be reminded of. 🙂
P.S. These wheelchairs are a lot easier to push yourself around in. But – we EDSers should know better! If you can avoid pushing yourself in a chair, do. You don’t want to ruin your upper body to help your lower body! 🙂 Pushing oneself can lead to dislocations, subluxations, bruises and long-term permanent damage. (And, I know! I stupidly tried to push myself around. My wrists rebelled and my shoulders screamed. Don’t think I will be doing that again!)
P.S.S. Yes – I do require help to pull apart the wheelchair and put it back together (and, if help is handy, they certainly do the lifting and put it in the car, etc.) – AND – I get to schmooze with people and convince them to push me around (this does work – mostly it is friends or family – but I did convince the drummer from my favorite band to push me around recently!)…the wheelchair makes my ‘invisible disease’ a little more visible, which makes me people more apt to help (and while it shouldn’t work that way, we all know it does). The only problem lies on the days/hours I am alone – which are many each week. In those cases, it seems best to just stay at home and not move around a lot!
If you have EDS, you may not need a wheelchair. But, there may come a day when it makes things a lot easier. If you have POTS, you may not be bad enough to need one, you may get to that point, or you may be too bad to even sit up in a wheelchair. Everybody is different. We can’t judge everyone who has EDS or POTS – everybody’s story is different. But, it is nice to know we are not alone. We are not the only person in our late twenties having to seek out what kind of wheelchair will work for us. We are not the only person struggling with the complications that these illnesses plague us with. We all are unique, beautiful and able to make it – with the support of our friends, families, and perhaps a nifty wheelchair.