I saw the outside world this night and it turns out to be not at all level like the indoors: it has slants. I had forgotten that. It turns out that ALL sidewalks slant one way or another. Annoying! I wheeled myself all the way to the movie theatre which is about maybe .5-.75 of a mile – surely about a kilometer so I am doing my training for the TC 10K which is after Sakura-con. One down and nine to go. Take that!
I have been inside a wee too long. I should have remembered how annoying all the ‘not quite’ curb cuts are (how hard is it to have a cub cut flush with the street? Honestly, the street is right THERE to measure against!). Also steep hills. But I saw the Sakura Blossoms blooming on a street on the way there, I have a cherry blossom leaf on my wheelchair tire.
I went to see the late, late showing of the film Sherlock Holmes, which has been steam-punked. Having read many a rendition of Sherlock Holmes and worked on two papers for the Sherlock society, yet unfinished (you think academics are hard, trying obsessive societies for fact checking) this film was a rather jaunty expedition with ‘she’, the one that got away. Also, an interpretation of Sherlock ‘playing’ the violin (like double bass) that was unique. Hanz Zimmer, who did the soundtrack for Backdraft, did another great job here. Ah, I must finish the papers, one proved he was a woman (as no single men of class could or would interview all the people he did – without chaperone!). While the other, proved that he like all great Golden Age detectives was NOT British due to the fact that he is cunning, intelligent and lies a lot (at this point in time it was seen as ‘not British’ to be intelligent – indeed, many best selling novels have heroes at Cambridge or Oxford coming home to worried parents convincing them that they were NOT studying. The purpose of Oxford? Well, at that time, it was, as Elliot put it in his retrospective work ‘Notes toward the Definition of Culture’ that university was the experience of taste and to bond a common elite culture. How did you know you had this taste? Well, Eliot states: if you have to ask, then you don’t have it). In this film Sherlock boxes when bored, which surely is an ode to Conan Dolye, known as ‘a Sport’ and well known for supporting and engaging in Boxing (and writing about it often). There are, of course, many changes to the holy text, but it is all in good fun and to see a shipyard in action (and what would a steam-punk film be without some sort of Tesla Device?) was worth it.
The countdown to Sakura-Con is 36 days or so. This means I need to choose and order my outfits but ALSO my accessories now (so they arrive in the post in time). I am trying to decide whether to go with purple and black torn leggings and matching arm warmers, skirt, corset, etc or blue and black – ahh the angst of a Wheelchair Goth. I have decided for the SECOND day to go with something simple like this. See, that’s why I need the fan in wishlist (and the hairband). What? Of course, I have to have a different outfit every day (shakes head in bafflement that is even in question).
Surprised I went out today as I was very, very rapidly ill yesterday. I spiked a fever which would be 102, and started bleeding in several areas causing spreading bruises as my heart rate went up to 112-140 and my blood pressure was all over the place. It may have been food poisoning and the fever was me going into heat stroke or the bathroom issues was a reaction to the fever. I don’t know. I do know NOW that most of my daily routines to keep myself healthy are based on data from long ago and it is inaccurate. My blood pressure and heart were crazy every time I tested them for a full day. Nothing like having half of my body going into shock and shivering while the other half is purple and green with odd blood pools under the skin to indicate problems.
I seem to be losing my hands and arms, or rather, anytime I use my hands, in particular, or my forearms, my T4-C1 sections go ballistic in heat, which in turn superheats my blood to the brain, and seizure or fever. My entire body can have goosebumps with an air conditioner on me in a tank top but try and type (or use my wings) and my T’s and C’s immediately heat up. A guess, based on Neurology journals is that much as demyelinating nerves in MS will physically increase the spinal cord signal channel, it seems that my attempts to ‘lock’ in functions, by doing them daily for several hours has worked, and failed. The signal channel is larger, neurologists theorize, because as signals don’t get through, more and more are sent. Because I spend hours working to speed up and maintain function, virtually ALL signal channels must be used, and so I maintain function at the cost of a fever. I also, in my limbs have lost use of several muscles. I probably lost another the other day, as it woke me in a full throated scream, with pain that was new to me. The next day weaker. Today, dead.
That said, I worked a couple hours to try and get a job today, playing the giant circle game. I have plotted how if I work 4 hours in a visitor center, spend 36 hours in bed recovering I can work 4 hours again and return to the workplace! Brill, no? I work in a Visitor Center as it will have AIR CONDITIONING in the summer and I will be part of a work force and see humans again. I REALLY need to talk to humans more.....and plushies far less than I do now! Plus I will work in Port Angeles, so that I have a chance at employment under ADA accommodation.
The 'circle game' is when you talk to person A, they say to talk to B, B says talk to C, C says talk to A and B. So I talk to Human Resource who lets me know that jobs for the visitor center appear in the National Database now. I wait and can’t see any for weeks so I talk to the head of the Visitor Center and it seems one of the days or weeks I was watching I missed it, as the jobs were advertised and now closed. BUT those would have been for 40 hour a week jobs. There are jobs for 4 and 8 hour a week but those are Internships, Volunteer or a program of locals who come and do jobs. I have talked to the visitor’s center head and he has no problem in theory with me working and wants to have a face to face before summer. Only HE doesn’t run the Intern, etc programs, as that is another person. But, as a line supervisor, he can only advise me to apply to this other person through a DIFFERENT webpage for non-paying jobs. Whew. Problem is, I can’t apply for a 40 hour a week job, and then say, ‘oh, and my accommodation for disability is….I need to work 8 hours’. He agrees but what can you do. Also, I can’t disclose medically confidential info to him as a line supervisor. So I call the head of Human Resources, who can’t quite get her head around someone like me working. But tells me that I do not apply on the website but send in a resume along with a Special A exemption appointment form. This means I am appointed to my point and accommodated. Okay, who does that. Oh the supervisor. Circle game.
“Um, I just talked to the supervisor and he was sure it was through the webpage, which is why I need to talk to you.”
Turns out that I need to apply for a job, without saying why I need any accommodation due to disability, then get accepted and THEN human resources can accommodate me. EXCEPT, since I have a severe disability, I am appointed, and not done through regular recruitment as a policy for this national agency. Okay, who does the appointing? Who decides? Um, no one knows. It is done at a local level but, the Human Resource person hasn’t heard of it being done and the Visitor Center person isn’t aware of it. By this time, I am loved sort of, I am affable, and it is two hours of straight talking on the phone so I have a seizure.
As I will point out (when I can talk again and get the job), that surely the agency hires people with epilepsy, and people with MS, and people in wheelchairs, and people with fatigue or respiratory problems. So add that all together with a large glob of autonomic failure, heart problems and vision loss and you have me (don’t worry, I carry an eye patch in my backpack!).
Cunning plan. So, so much effort. AB people just don’t have the slightest idea of how much effort is involved in the most basic of functions. I can sit still and talk on my oxygen with breaks, and my medical drinks. That is a visitor center. But to do a ‘meet and greet’ for a job that pays nothing, and will probably cost me three days of effort and recover FOR the ‘meet and greet’. Sigh.
Tomorrow, or rather later today, I hope to go boxing, or shadow boxing to sweat. I have the plan: fever free, then exercise, then 10K. No, I’m not getting better, I’m getting weaker. But I am going to be the fittest I can be, with the greatest reserves. And I got to see outside.
13 hours ago