Maybe it’s just the heat, but I feel a little unfocused of late. And speaking of the heat…
Maine is in the midst of one of our (hopefully) brief hot spells. Even though I spend all day in an air-conditioned room, and sleep all night in an air-conditioned bedroom, I still feel a dramatic increase in the level of my disability and the amount of fatigue I experience. I am hoping that this is caused by the ambient heat, and not an alarming progression of my MS. I suppose time, and the return to cooler weather, will tell.
I recently went on two outings – the local Moxie Festival (and if you’re not a Mainer, you probably have no idea what a Moxie Festival is.) and a visit to the summer camp my daughter is working at. Even though I was accompanied on both of these trips by my son Benzo who is a very accommodating and willing wheelchair pusher, there were times at both of these events when my manual wheelchair, coupled with my lack of physical stamina, had me wishing for a mobility scooter. But on both of these outings, I came across situations where a scooter would have been completely inappropriate. The first was a restaurant which I could never have maneuvered around in a scooter, the second was an inaccessible bathroom that would have been completely impossible with a scooter. I am now engaging in a hotly contested internal debate over whether or not to pursue the acquisition of a mobility scooter, knowing that many of the things I will encounter when out and about will not be accessible without a wheelchair. (If any of my loyal readers have any advice on this topic, I would appreciate hearing from you.) I wish that it were possible to borrow or rent a scooter for a couple of weeks so that I could put it through its paces and see if it is an appropriate mode of transportation for me. (I’d also like to be able to do a trial run with a baclofen pump. I have the feeling that it might be a very beneficial device, but the fact that it requires a surgical procedure and time spent as an inpatient while it is adjusted means that if I discover after a month or so that I do not like it, it’s removal would be at least as invasive and complicated as its insertion.)
And here’s one other thing. I have over the years ranted, however gently, about the fact that the vast majority of the disabled characters I’ve seen on television were played by able-bodied actors. (Artie on “Glee,” Billy on “Legit,” and the original and upcoming Ironside.) I liken it to a black character being played by a white actor in blackface. So I was very pleased to discover the Sundance series “Push Girls,” and the series of YouTube videos “My Gimpy Life.” It is refreshing and somehow empowering to watch these two dramas unfold (Push Girls more of a reality show, and My Gimpy Life a comedy) knowing that these disabled actresses are REALLY disabled and not just able-bodied actors reading from a script. I encourage you to check both of them out.
That’s all my heat addled brain can come up with right now. I have to go and refill my water bottle, and lie down with a cool towel on my forehead. I hope you are enjoying your summer, wherever you are!
one life: livin' the dream 