Thursday, February 25, 2010

I see the world outside and apply for a job (circle game!)

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.

15 comments:

Victor Kellar said...

We saw Sherlock Holmes over Christmas. I am, I guess, a minoer Holmes fan. I read some of the stories as a kid, saw all the Basil Rathbone movies and most of the other film interpretations (for me of course, it's always movies over literature, as blasphemous as that may be)

I liked the movie. I thought Jude Law, who usually doesn't impress me, was the best onscreen Watson I've ever seen. They needed an action element to appease the masses but I though the rationale behind Holmse's mixed martial arts style made sense: The way they had him analyze every move in order for him to effectively dispatch his opponents

Sorry about your frustrations about being outside. In my neighbourhood most of our curbs have those little dips in them, I assume that's better What amazes me is our subway here: Every car has seats that can be folded up and a place a wheelchair can be locked into BUT not every station has an elevator in it .. that amazes me. Why isn't every station accessable? But then again, the way the city neglects the roads here, the streets are barely accesable to cars either

FridaWrites said...

I tried to go back to work part time last month, but just the recovery from the interview/getting set up means I can't yet--probably it would have been different if I'd had the rehab wheelchair, though transportation would be an issue. I'd be in the car 5 hours three times a week because of the distance to my husband's job--the monetary (gas) and physical cost made it not worth it too, not without hand controls. I understand the desire to work--I've been there, am there. I also worry about you.

I still haven't seen Sherlock Holmes--I will have to!

The circle game--I am very familiar with that--should have had the rehab wheelchair last summer or at least by early fall.

Kate J said...

Your sakura-con outfits sound great! And no, I can't see why you'd need a different outfit for each day... no, I mean I can't see why I would need a different outfit for each day, I'd probably turn up in jeans and a sweatshirt (probably my really great Salt Spring Island one with the killer whale on it) BUT the point is that YOU need to have a different outfit each day, it's important to you, and will give pleasure to you, and to Linda and Cheryl, and to the many, many people who will see you there and think 'hey who's that cool chick with the wheels and the wings???'
And I'm glad you enjoyed Sherlock Holmes. I only saw the 2nd half (I work in a cinema part-time!) but it looked pretty good to me. You gotta like steam punk, but then I do, I do.
Love & peace

JaneB said...

Seeing the outside and getting cherry leaves on your tires sounds good. The rest sounds... complicated, in the unique, painful, Beth sort of way your loyal readers have come to expect. I wish I could give you some stability... but I suspect you would find a way to push its bounds!

SharonMV said...

Dear Beth,
I'm glad that you got out and saw the SH movie. Now I know it's worth renting, I'll try & see it. I know it's no use asking you to take it a little bit easy - if you can do it you will, even if you can't do it, you will!
I hate the circle game. This is a favorite game of health insurance companies. I miss being out among people so much! I have adapted, but it is hard. I have to stay in for a couple more weeks so I can make it to my appointment with the Immunologist at UCLA. It is the only way I can get my insurance to reinstate my IVIG coverage. I have my last treatment on Fri. If this doctor fights for me & sends his report quickly, I may not have to go too long past my 3 weeks for the next treatment.
I hope you can get a good 4hr job. In the afternoon with great air conditioning & people to meet.

Dawn Allenbach said...

Keep at them, dear. I hate the circle game, but HR people and execs love it. So stupid.

Still haven't seen Sherlock Holmes, though I want to.

cheryl g said...

Hurrah for seeing cherry blossoms and going to the cinema! I am glad to hear that you had an evening out.

Of course you need multiple outfits for Sakura Con. Why not purple and black one day and blue and black another? I will be dressing in my usual manner since the attention should all be on you, right?

Sorry about the circle game. I will do some talking and checking and seeif I can’t get the circular motion to change to forward motion.

Keep flying Sis!

Raccoon said...

I saw Avatar a couple of weeks ago, the Sherlock Holmes didn't catch my attention.

I saw a news article a few minutes ago that was talking about rehab for TIA being exercise. The specific program they were talking about involves aerobic exercise, resistance training and "health education."

I looked at that, and said to myself: "But what if you are having TIA by just thinking?"

The article didn't answer that...

Motorcycle girl came today; I was much surprised! Very way cool. Thank you.

wendryn said...

Heh. The outside world has slants. It's a pain sometimes, isn't it?

I was amused by Sherlock Holmes, but I didn't expect it to live up to the books (which I read and re-read growing up) and it certainly met my expectations.

Losing muscles sounds really difficult.

I hope Sakura Con comes together well!

The circle game is ridiculous. Sorry you have to deal with it.

I'm really glad you got out today and that you are still undeniably you. Your writing is still in your voice. I know that requires a huge amount of effort, but, if it helps any, it's very good to hear.

Linda McClung said...

I really liked strolling under the cherry trees on a warm spring night. It was very quiet around midnight even though we were in downtown Victoria.

I don't like the circle game either - in my experience it happens a lot in government. It sure did in my job. Speaking of which i want to thank people for their concern about my job hunting. My lck of job is really stressing Beth out and while people ask her for updates because they care or make comments about her supporting me, it causes her extra stress. So, if you want updates, please ask me not Beth so that we can reduce her stress.

About Beth getting a job. I think Beth would be a great asset to the visitors centre. I also know she'd really benefit from the social interaction. I want her to have the interaction and the self-worth working can give, but I also fear how Beth would cope with the physical cost (the ferry ride which induces seizures, how talking taxes her body, the lack of a hospital bed when she stayed in PA, etc.). I also wonder how I would cope having 18 miles of water between us and not being able to drop everythng and be with her in a matter of minutes when she needs me. It brings out my inner control freak.

deadrose said...

Oh, the bureaucratic circle game! Whatever would they do without them?

I haven't seen the new Sherlock Holmes yet. I'm not sure my sweetie will want to, even on DVD. He's very picky about Holmes canon, which is odd since he doesn't even *like* Holmes. For me, Holmes was a constant companion in childhood, a fascinating intellect at work, and an inspiration. I have no issue with modern additions as long as they get the feel right.

If the science of crime scene investigation had been around when I was young and looking for a career, that would have been exactly right for me, and I don't mean the glamorized CSI version, though I love the shows (except Miami, David Caruso drives me spare).

Have you thought of going for an onscreen keyboard rig that spares you all the extra hand movement? My friend James had one, that he used with limited movement of 2 fingers, and he typed fast enough to chat realtime without anyone noticing the delay. He even wrote and sold software.

Just thinking it might allow you more communication time online without overheating :)

Seattle is afloat on a cloud of pink blossoms now! I hope there are some left for Sakura-con! Also, I vote for both outfits, like Cheryl. I've even used several different outfits in one day at cons before. If you can only manage one, I say purple!

Our postcards arrived yesterday, a very bright note in a glum sort of day. Thank you so much!

FridaWrites said...

I second it that you'd be great at a visitor center--make people feel welcome and if you didn't know the answer to someone's question, you'd definitely do the research to find out, as many employees won't take the initiative to do. I do worry about you but I also want to be supportive of you, of what you want.

Almost curb cuts are indeed a frustration!

Thanks for letting us know about the stress asking about jobs creates, Linda. I know you guys will definitely tell us when something changes.

Lene Andersen said...

Gotta love the bureaucracy. Enough to make you dizzy.

I'm so glad you went outside and came home with a cherry petal on your tire. proof!

And speaking of proof... I need - not want, NEED - to read that paper of why Sherlock Holmes was a woman. Awesome!

Anonymous said...

you are ridiculous.

Neil said...

But Beth, I don't see any mention of a box being opened...

Linda: thanks for the comment; it's good to hear from you. I hope things are going reasonably well for you. And we love you just as much as we love Beth, you know. :)

I only recently saw the Holmes movie being advertised. Since I don't deal well with the volume that they play movies at, I'll wait until it's available on DVD. I do want to see it, though.