Last night, in my indoor wheelchair, I tried to wheel myself to the bathroom and just lay down my head on my knees. It was not fatigue, though I had plenty of that, or pain, though I had that as well, it was the almost physical SNAP back into my life, after hope was gone.
In the office, the specialist didn’t know or care about my conditions, and treated me as such, “Do this..”, “Do that…” all this a few hours after watching on Boston Legal one of the partners successful petition the court to force the hospital to KILL her father with a morphine drip because he had memory loss, long periods of dementia and incontinence. “He is a shadow of his former self!” They said as proof positive that death, that KILLING him was better than watching with pain, his fear, his limitations, his disability, his disease progression.
I too suffer from fear; many of my old fears have return along with new ones. Because I have seizures or TIA’s and cannot remember the events which cause the fear, I just have the fear: Fear of new night workers, fear of change of schedule, fear of things moved in my study because if I have a seizure I will never find them again. I cannot depend on my mind. My disease ALSO has seizures, and grand mals as part of its progression, much as Alzheimers does, the disease that makes someone a ‘shadow’ of themselves and thus worth killing. Or as the judge said, “I don’t play God, but here the patient is IN distress and there is no good reason for them to be so” (meaning that they should die).
Well, guess what, I AM IN DISTRESS. I cannot remember NOT being in pain, I cannot remember a day I did not wake because of pain, I cannot remember having the energy to get all ready to leave AND leave this apartment by myself, I cannot remember when Linda last laughed at something I said, or when I last laughed. I haven’t smiled once since leaving the specialist’s office. One of the theories during brainstorming with Cheryl was that the specialist might want me to have MORE seizure cycles, and larger ones, so that his job would be easier (the reason for removing the drug to both stop seizure cycling and the drug to extend the time between seizures).
I did not, I do not know what I am fighting for, and if I want to go to bed, if I want to get up, if I want to breath, I have to fight. It hurts to breathe, every breath. That is one of the reasons I am on pain killers. The left side of my body has atrophied so quickly that now my wrists instead of being “stick thin” actually bow IN (like the children you see on the starvation pledge drives in Africa). I don’t have any fingers left that are thick enough to hold my rings. But those are NOT the reasons I lay down my head.
I lay down my head because for a moment, the specialist was so convincing, in that all he needed to do was label me and I could go back to ‘normal’, that my hope for any sort of a better life, for ANY improvement in quality of life led me. It led me out onto thin air, because not being able to remember more than a day or two at best, being afraid of most people and not being strong enough to leave the house. He could offer me hope, help. And when it was taken away, I fell all afternoon: until finally I hit.
What is, however bad that is, is as good as it is going to get (the hope that Seattle holds regardless – a trip I FEAR, for the reasons that I am experiencing now, and HAVE experienced so many times before – If I have it there, then I truly am, just waiting around to die). This is the place where I am, and suddenly, I couldn’t find a reason to keep trying. I wasn’t interested in self harming, I wasn’t interested in even peeing, I just looked at where I was, at what was, and I have no plan, no dreams, no trip, nothing. I have no reason to raise my head in order to take the effort to transfer to the toilet so I could go to bed. What did tomorrow offer?
Sometimes, when I am doing a 10K in the racing chair or when I am challenging MYSELF, should wear a sign saying, “When I fall, LEAVE ME” because people don’t get sometimes that when the only thing that matters in the whole world is that 10K and finishing, then either you get up after falling, or you stay there until you CAN get up.
This is not one of those times. This is a time when I would say, HELP.
I am not fatigued, or burned out. In fact, I just did a post for The Postcard Project before this one. And I know full well that I am ‘but a shadow’ of myself, that people like it when the ‘old EFM’ comes out for a while. Except I don’t have the energy, the health, the ability to BE that person, not for very long. And yet, I am not going to wait around to die, or let someone kill me because gosh, it is so painful to see Elizabeth so feeble compared to what she was.
I wrote a new post, an update on the Postcard Project. And tomorrow, it is my intention to write to the CBC and CNN and MSN and anyone else who will listen to tell them about the Postcard Project. That’s why I wrote the post.
This is where I ask for help. Please, that in any place you can think to link or talk about it: anywhere there are people who are disabled, who are depressed, who are lonely, who are in isolation who need a tangible proof that someone cares about them, that you create a link to http://efmpostcardproject.blogspot.com/ - the postcard project.
Why would I do that? Why, when so exhausted and looking at months and months before anyone will even, maybe officially help me, as I grow weaker, would I want to double or triple the work I do: that I PAY to do. Because I do not know how to make my life better, or make the spark inside of me come back alive, but I will damn well not give up on trying to make someone else’s life better. SOMEONE has to try. If this whole medical experience has taught me anything it is that SOMEONE HAS TO TRY AND CARE. Right now, I see the trees, I don’t see the blue of the sky, or the beauty of the leaves or the majesty of the forest, I only see a maze of unending trees/obstacles to nowhere. That is where I am mentally right now.
And yet, I will act as if I will one day see the beauty, be part of the beauty. Until then all I have to offer is what I right now, feel devoid of, the genuine caring which would make my quality of life better. The thing that would make me smile. A tangible something to make me believe again, that life is going to be more, than just “getting by one day at a time.” I don’t want to be “getting by”, I want to be glorious, to do amazing and stupendously stupid things just because they popped into my head. I want to take risks, I want to LIVE. And while I am breathing, one painful breath at a time, right now, I am not LIVING, and I don’t know how I will get there, but I believe I will.
And as much as one fairly ill human can, I will do what the USA promised and has rescinded, what Christianity promised and rescinded, that humans are not disposable. Send the word: that to anyone with a computer or with a friend with a computer and an address, send me your tired, your poor, your huddled aspect of the self, your downtrodden, your isolated, your bedridden, your unvisited, the people made invisible by disability and those who fight their invisible disability, I am here.
No, I will not give money, I will not give full replies to every email, I am simply not able to. But I will, if you ask, send a tangible evidence that I spent about three hours making something JUST FOR YOU. I can offer evidence that I care, and will continue to care about YOU. Please spread the word: to some, it is just a postcard, and kind of cool, and that is fine. And to others, it may be the only individually addressed and caring post they receive this month. I don’t make qualifications, if President George Bush asks me for a postcard, I will try to make him a postcard that will bring a smile to his face. Likewise, if Dr. Atwell-Pope asks me for a postcard, I will (though yes, I did put her under investigation) spend three hours to make a postcard SHE will enjoy, which will brighten her day. Quite honestly, I think there is a long list before either of those two are likely to ask, but that is the help I ask.
Because I don’t know what else to do. And because I know how much it hurts when you have a future that isn’t one, and you have a present day which looks very bleak indeed. I don’t know how to help myself, I don’t know what to ask for, but I know what I can do. I can make postcards. Help me find the people to send them to.
3 hours ago