Sunday, I had to work a couple hours on sorting and getting rid of the clothes of someone very dear to me who had died. That is what you do, sort out the clothes, these were brand new and so going to a consignment shop. The person who had died? That was me.
When you are tall, if you find something that fits particularly well, like jeans on sale, you get two; so a piles of $100, $125 jeans, tailored suits for when Elizabeth was going to teach or do her government job, brand new sports hoodies and training outfits for her cross-training. All taken to the consignment store. Clothes I had bought, had wanted, and yet when the season came around to wear them I was already ill.
An acceptance of the death of a type of Elizabeth: that I will never be size 13 or 14 or 15 again. Because I won’t be walking or hiking or jogging. That the Dr. Elizabeth, teaching courses, able to be consant in her ability to take on a course load of teaching and marking, is dead. Elizabeth after 14 months of trying to get a job and finding that in a place where there is sign for help in every other window and hundreds of jobs advertised, that they are all full time. And that every job she has applied for, she’s never been shortlisted. Because as someone said on the CBC news website, often the cost of accommodation (which isn’t legally required) just isn’t cost effective or worth the effort of hiring someone with THAT level of disability. But I didn’t have time to grieve. I grieved in part today, when I cried for 45 minutes straight.
There are two parts to my illness; the emotion and the physical. So with some pain control my emotion side was able to pluck up, though I have never hid the physical since point number one of why I WANT to live is that everyone with my disease has died. Most of the posts of why I want to live are the emotional reasons of why I want to live. Yesterday’s post number seven was an example of what has gotten me emotionally TO where I am, how I survived in extreme pain, in times where I had multiple medical appointments and test for WEEKS without a break. Where I would have to go from recovering from a seizure, be plopped into a wheelchair and driven to the next test, which would exhaust me further. Surviving was in postcards and planning surprises, getting mail, all making me believe that I was not alone, that I was not without worth and more than just a human experiment. I could spent what energy (and funds) I had looking for neat things on line that someone might like. These are what kept me from killing myself.
Physically, I am worse off than I was last week, last month, last 60 days, last year. Physically, at current progression it is hard to imagine me being here next august, must less trying to figure out what exact state I might be in if I am still here in December 08 (maybe 24/7 oxy and hospital bed?). My emotional ability to come up with reasons to live didn’t magically give me twice the energy, didn’t really stop the fatigue, or stop any of the serious conditions for which I am still untreated. And yes, no one in the 108 years since what I have was first noted has lived more than a few years. And seizures are part of that, of the three types, I am C, which is central autonomic failure and seizures are on the list of progression right before ‘end stage’. Because I bleed into the skin under my hands, into my feet, into my arms (confirmed), and yup, into my brain, or so the theory goes. Which is medically bad news.
Sure, I have hope, my hope is that I get diagnosed with some autoimmune disease speeding my progression, that IVIG or another treatment is started, that it works. The fact that I cannot feel the pain because Lyrica works does not mean that the peripheral neuropathy does not continue to advance, that all the systems choking, or failing do not continue to do so. Simply because you have a shot and can’t feel the side of your mouth where your tooth is rotten and your nerves are exposed doesn’t mean that the nerves are all better. My hope is that I live, in this state for a couple years. Unless treatment is started soon, another month of degeneration will mean my state of being will be MORE dependant and more at risk for sudden death. Every month without stabilization means that.
I said I post my surprise packages in the summer because there is no December. That hasn’t changed. I will never be able to take a trip like Japan; I will never be able to start most sports because my body is simply too frail. That doesn’t mean I don’t WANT to live. But that also means that I have to accept that things are never going to be what they were, and that includes last month, the last three months, last six months. So I have to grieve for the death of those Elizabeth’s and move on. Because I want to live. And everything medically tells me that isn’t going to continue happening for very long.
So I keep trying, and I keep thinking up new tricks, if and when I can but that is it. Yes, emotionally, I am back, I am ready to try and care about life. Physically, I am dying just as fast. A nurse is coming for a health evaluation, a dietician is coming for weight loss and I am on the list for barrier free housing because this wheelchair that is coming is my “last chair.”
And I need the housing because this chair is coming with modified hand controls which as time progresses will be moved to head controls. But I need to be in a place that has tracks in the ceiling to move my body around, as my nerve death continues, and the weakness continues and I cannot transfer myself. Then it will be time for the sling to move me into my chair, or to the bath. So we are applying for the housing. If we don’t get that in time, then I will likely have to move into a hospice or a home….by myself. They don’t do couples living there, at least not here. So adapted housing from a charitable organization is our next goal.
I still WANT to live. But that is what I spent yesterday and today doing. Now I am going to work on postcards, and later on packages, while I still have some hand function.
This week they are building shelves by my hospital bed so some of the gifts and cards I get can be moved there for days I don’t get out of bed. That’s why my number 1 new goal was to get out of the building four times a week, not seven.
I am glad that my pain levels are less, it means I can plan more. But I am not going to storm back against the gates of mortality. EFM WILL die. But (with proper pain control) she will try to keep living at the limit of her possibilities until that happens.
4 hours ago