Life at home has been going well, I have a really great furry nurse, Dixie, who thinks I work too hard sometimes I believe. Oh, and my parents are pretty great as well. We are still feeling out our new dynamic a bit, as I am NOT a teenager or college student anymore and I have been living as an independent adult now for 15+ years. I have my own likes and dislikes when it comes to programming, and they have theirs, and that is okay. I am trying to be as independent as possible, and my new ultralight loaner wheelchair that was delivered on Tuesday will certainly help with that.
That said, I am most likely going to end up what is called an “Ambulatory Wheelchair User.” What people need to remember that many people use wheelchairs for a variety of reasons, and not necessarily all are paraplegics, or quadriplegics. People with Ehlers-Danlos Syndrome who have hypermobility, and dislocate their joints easily often use wheelchairs. Others might have Cerebral Palsy, and can move, but their body doesn’t fully cooperate. Same with those who have Parkinson’s, or MS, or who suffer from POTS, where standing and/or walking for long periods of time means they cannot participate in life to their fullest capability without a mobility aid.
There is a LOT of stigma and downright ignorance out there about disabilities in general. Just because my disability is not 100 percent noticeable through talking to me, or the fact that I can walk short distances (about 200 feet max right now) does not mean walking is the safest or most efficient way for me to be fully present in my life. There are plenty of stories and videos online of younger people getting harassed for using disability parking spots, when they can hang on to their car, and get their wheelchair for transfer, or perhaps they are an amputee wearing pants, and don’t use a mobility aid other than a prosthetic leg. A lot of these end up on Reddit or Twitter areas with hashtag #disabilityfakers or something similar. Those of you who know me, can you imagine me being fully present at school and effectively doing my job using a walker?
Specific to where I am at now, I can walk about 200 feet, but it takes me about 5-7 minutes. I have real trouble getting my left leg to follow a normal walking motion, my foot drops, and it likes to drag. I can solve for some of that by high stepping my left leg, but that gets extra tiring, and my paralysis is such that it doesn’t always work. I can mostly feel from the knee up (though I can’t feel pinpricks) but the knee down while I get occasional tingles, is usually novocaine numb. My right leg, though better gets extra fatigued while walking, and I still lack some feeling on the top of my foot, toes and side of my foot, but I have good strength and movement in that ankle. I get electric shock like sensations (that can be painful) whenever I stand up and walk in both legs, and I get muscle spasms in both legs, but the left is way worse. Those muscle spasms strike somewhat randomly, but more occur the more fatigued I am. I AM walking some every day (and trying to do more), but the fact is in the wheelchair I can do much more, like help out my parents with the cooking, getting my own water when I need, work on my own laundry and generally take care of myself. With the walker, I can’t do much of any of those things as standing more than 3-4 minutes the pain/electric shocks get pretty bad.
That’s enough for now, I am starting to play my viola again, but trying to do so in a wheelchair means my balance is all off, like so many things, I can do it, just different.