I learned yesterday that Harriet McBryde Johnson has died. People talk about the loss to the “movement” and yet for me I burst into tears because this was the woman who wrote Accidents of Nature, the book which took 12 years to be published (book on Crip Camp which mocks the able bodied people….not popular to editors, odd that). Accident of Nature started me down the road about disability experience. At the time, I was new in the chair and only related to about 5-10% of the book, but it gave me a look from the inside. Little did I know in twelve months, I would have experienced many if not most of the attitudes described in the book.
She might have been a great advocate, or voice for the community. But for me she was the single voice who could explain to someone who was rather scared and desperate what it meant to be in a wheelchair; who I was, what to expect from people who had similar disabilities/impairments, and from those who run organizations “for people like me.” I will spend some more time tomorrow talking about what she means to me, but for me, when an author dies, it is personal. Because they exposed themselves, and I did know them, even if they never knew me.
This morning, the tech, in preparing me for the EEG told me that I was fucked. Or rather, somehow we ended up talking about nerves and I said if the neurologists said my axons were destroyed in my limbs, what did that mean? And he said that if I ever got any of THOSE nerves to work again, well, there would be a LOT of researchers very interested in me. It is strange how when the neurologist says, “Well, your damage isn’t the myelin but the destruction of the Axon” and you look that up and you know, you sort of KNOW that means this day is as good as you are going to be nerve function wise. But then when someone who does nerve testing makes a comment like that you KNOW, for some reason, it is like when you know that you have X, and then the “white coats” tell you that you have X and it hits with a BOOM. So this was a bit of a mental boom. And what he said after putting like 22 electrodes to my head about “just wash them out with water” was a total lie, so an hour today (just like yesterday) getting an assisted shower, followed by oxygen and loss of talking.
We arrived at 7:50 am at the hospital to find a VIHA van parked ACROSS the disabled parking spot (not in it ACROSS it), I memorized the licence plate number and gave it to reception so they could call the police and issue a ticket (after I left they reception probably threw it out). Since when we left we found TWO trucks parked ACROSS the disabled parking spot and BLOCKING us in (we were in the OTHER disabled spot). So I can see keeping those spots open was a HIGH priority for them. Seems that “Blue Badge” means, “use this as a loading zone” – and this is at a hosptial. But that is another windmill to attack another day. I was wheeled in and put in the bed and they attached the electrodes and did the hyperventilation inducement and the flashing lights and other tests. Before the test I asked for my Gatorade. He (test guy) says, “No drinking for the EEG.” I say, “Well, I hope I don’t vomit then.” He tells Linda, “Get her the drink, no vomiting during the test!”
After the test, they have flashed things at me for 10 minutes trying to make me have a seizure plus I am on my back so I can’t talk and it is hard to breathe. I can’t sit up for him to take electrodes off, and they have to use the bed to get my torso up. The techs seem to think I am the “sack of potatoes” since they talk to Linda, like, “Can she turn her head this way?” when they are standing by me and I am by the tech, so Linda goes, “Beth, turn your head.” And I feel that Linda is now Sigorny Weaver from Galaxy Quest who just repeats whatever the computer says.
I am seeing lots of black spots and sparkles and my head is doing the weeble-wooble and he asks Linda, “Is she having a seizure now?” And Linda goes, “No….this is pretty much how she is.” Hey, thanks a lot Linda, next time I come in a corset to try to erase the “This is how she is” image.
I had a night care worker last night which was a good thing because she was wearing a white hoodie partially zipped and after my seizure she kept asking, “How are you?” and “Are you breathing okay?” which made me think that she was a doctor (looking down at me, wearing white, seems logical right?). But Linda said that no, she wasn’t a doctor, but she must be good at lifting as the two of them got me from the chair to the wedge on the floor and the oxygen on me. I think I might have been deaf in one ear as I kept THINKING I was whispering and using my working hand/two fingers to point to things of MINE on the floor (like two girls kissing poster) and point to Linda and whisper, “Pervert.” At which point, Linda who was on the computer said, “You shut up, that is all YOUR stuff.” Which is when I showed the home care worker the vibrator. I REALLY am interested in the ‘incident report’ the home care worker has to write up after an ‘incident.’ Actually, for our place, that might not even rate as an ‘incident.’
I am also obsessed these days about people’s PE experiences. This is because I had this dream two nights ago about how S. from my high school overheard me while I was in this class with horrid math problems (In the dream I remember that I took it as an “easy option” instead of calculus and asked half way through class, “what is this anyway” – turns out is was a class of “scientific mathematics” and I was called to the board for a .6 conversion for an experiment requiring converting liquid to solid weight….in imperial. Yeah one of the THOSE dreams). Anyway S. who was my friend was pissed at me (misunderstanding!) and had stolen my bag with my gym clothes in it and now P.E. was up and what was I going to do. And then I woke up and remember, I HATED P.E./Gym class, as the teachers were natural athletes who didn’t understand things like say, bones growing during puberty and being awkward. So I have been asking everyone about P.E. and who took what. Linda had NO gymnastics, she had NO dance because she lived in some Mennonite town where everything was a sin so they did like running and curling. One person did Hula-hoops in gym class. I went to a private school so for example, one year our final grade that quarter was based on our FLOOR ROUTINE in gymnastics. This HAD to include: a full handstand with rollout, at least two cartwheels and a forward flip from the springboard plus a few other requirements. I just want to say now, being six foot at the time, doing a full handstand with a non successful rollout is like the sound and impact of a Douglas Fir Tree falling down during logging. WHAM! Then there was ‘ethnic dancing’ which included clogging and just about everything. We even did tennis (I told you we were a private school). The care worker did gymnastics and basketball and volleyball BUT in volleyball she had these “wrist guards” which stopped your wrists and forearms turning into giant bruises which seemed grossly unfair to Linda and I who hated this sport for that very reason. Though I was liked in Volleyball because I could do the underhand drop serve, the overhand and the jump serve (remember, I was in California!). Do YOU want to be on the other side of someone six foot doing a jump serve? I thought not. So if you had any odd P.E. sports let me know. By the way, just a note to ALL my P.E. teachers, I have NEVER been able to touch my toes (which from the hip rotator are just over 4 feet away), no matter how much you PUSH DOWN ON MY BACK YOU SADISTS! Sorry, little issue.
Anyway, if you made it all the way this far you get to hear my NEW PLAN which is the POSTCARD plan part II – which is that I have so little control over my life that I am sending EVERYONE another postcard (when my reinforcements arrive). That’s right, LIFE is my Dai Boken, this is my big adventure and as much as I would LOVE to go on another trip, I can’t. I am too weak and with the summer here I have to stay inside most of the time. But that doesn’t mean I can’t DO something. And while I am sure I will oppose discrimination (they seek me out, honest!), I also want to DO something, something positive. Something which tells you that someone out there is thinking about you, particularly if you are like me and have your up weeks and down (and honestly, who doesn’t). So, prepare! I have expanded the list and will expand it more. If you are a lurker, a ex-reader, a new reader or someone who wants to get a postcard EVEN if you live two blocks away from me, then please email me and put “Postcard” in the title. My email is: mpshiel at hotmail.com.
I have already started and I will try to put all my creativity and wit into these so that no matter how many bills and junk mail you have you can know that something comes, something maybe not WONDERFUL but at least, okay, maybe even good. My aim is an average of FIVE MINUTES of a smile for each postcard. For someone having a crap week, that can be an important five minutes. So please, allow me to send you a postcard and send me your address. They will NOT be passed on, I promised. If you have already given your address for the Japan Dai Boken then don’t worry, YOU WILL GET A POSTCARD, no matter what country or continent. Haha! That’s the plan. Not a country changing plan but a plan none the less.
Sometimes not giving up or giving in is doing little things, one step at a time until you have done a lot of them, enough to be called a BIG thing.
This is how I’m not giving up.
1 day ago