I have dreams; fantasies about sticking my hand into a blender. Because I am not human.
I have little to no nerve feeling in my arm, in my face, my torso, and yet I can still move them. Yesterday, to illustrate my point to my night care worker I picked up a pen and stabbed it full force into the right arm, the same one typing this. I have the red round mark, and the indention where it entered. About 90 seconds to two minutes after the stab I felt a sort of throb, so I guess the pain found a route, somehow, somewhere. I feel nothing and yet I still can move my face and limbs, imprecisely. Something about how pain nerves are bigger than muscle movement nerves. I dunno more than that, since I don’t have a neurologist anymore.
To me it sort of seems like a zombie film. I have this skin and muscle that I can move, but I don’t feel anything. That’s a zombie right? I wonder if they shot me, would I feel it? Since I don’t have a neurologist and no one seems besides me to be recording how fast this is spreading, I don’t know if after breaking or eating all the axons of my nerves for pain, whatever it is will turn to other nerves? Then I won’t be able to feel the hand OR move it? Which is sort of like my life 10% of the time' between seizure and fatigue anyway.
One thing I have been keeping track of is the loss of my sexual feeling, my clit. The vibrators are not as effective and I estimate that all areas that have feeling are reduced by 60-70%. So I guess this WOULD be a good time to enter sex work, since I could be a living meat doll, able to smile and not feel it, able to hug and not feel it, to fuck and be fucked and not feel it. Meat doll.
I found out thanks to google that I am the number four response to “She raped me with her strap-on” (yeah, thanks sitemeter!) – which considering my memory (giant holes, nothing short term beyond five days consistently) I had to ask Linda, “Do we HAVE a strap on?” Nope. So not sure how I ended up the answer to that one.
By the way, beyond not being hungry, or thirsty, I don’t really have taste, and when I say that ALL areas are reduced by 60-70% that includes my tongue as well. My clit and my tongue. I wonder, will I be the first lesbian to “fake it?” Make the right noises at the right times though I can’t feel anything.
There is something I am supposed to grieve I think but I’ll be damned if I can’t figure out what it is precisely. I have dreams every night of being skinned, or covering my torso with knife cuts and carving ‘Morte’ on my stomach. I have dreams like that while awake. Yesterday at badminton, I took of my legs restraints so I could throw myself further out of the chair. I wondered if I would break anything. I wondered how long it would take to notice.
When our new overnight long term worker arrived last night we told her that she has to check my oxygen levels, that I can’t feel my temperature. That she has to do it for me. Told her the it was important to keep me conscious when I am trying to be conscious, and asleep when I am trying to be asleep. Told her about the problems feeling.
She wanted to know how I could be in such pain, so much pain if my nerves couldn’t feel. I told my guess, that if plucking just one nose hair is REALLY painful and plucking eyebrow hairs is painful and those are just ONE or two nerves and I have millions and hundreds of thousands are dying, that they might be screaming, all the time screaming. And if, it takes them five of ten minutes to get a path to my brain, it doesn’t matter because they don’t stop screaming. And that is just the pain nerve endings, the muscle pain, from constant oxygen deprivation, hurts too. And the pain from ripping of my muscles from a cellular level up, and never being repaired. Like me, they are sending out messages for help; but it never comes.
We told her that we try to keep the bits that can’t feel from being too damaged since I still have hand injuries are months old, and that I can’t survive an operation, because the heart is dodgy and that is not to mention the progressive anemia. So if something starts to rot or get gangrene we will just have to try to stop that from spreading.
She asked me then if I had tried ‘alternative’ medicine because she knew a ‘wonderful woman’ who had healed herself of cancer. And that she could tell what was wrong with you without even touching you and how my overnight worker, who was signing up for a long stint with us, for watching over me, she believed that NO ONE who truly WANTED to be healed or to be cured couldn’t be cured. Yes, if you WANTED to be healed, then in this day and age with all the different medicines we have, traditional and alternative if you really wanted it, you could be (and this woman had some training from 'a real chinese doctor').
I can’t express how angry I was listening to that. Here sat this person, younger than me, telling me that I just didn’t WANT to live with Linda enough, that I somehow WANTED to spend my time writing wills and living wills and taking pain pills and hurting rather than being outside running. I told her there aren’t any 800 year old people around and that in Buddhism one of the truism is that if you are born you are going to die. I asked if she had seen anyone die. She said she had “Taken the palliative course” and sat with people who were dying, old people (as in no, hadn't seen anyone die).
I told her that I did palliative work when I was teen and it was with people I knew. I said, this is going to be someone your age, and it isn’t going to be old age, or cancer; I said it is going to be brutal, it is going to be agonizing, and you will be here month to month to see if. I told her the autonomic system controls the heart, and the veins and blood pressure and heat and oxygen. She would see things that she might never ever see or hear of again, and would she be calm when the pain of a heart that stops beating and then starts again to a highly constricted vascular system causes me to scream, and scream? When my vascular system rises and starts bursting as it does, turning my limbs green before the blood just starts erupting everyone, in joints, in hands, in elbows, shoulders and in my brain, putting me in TIA’s or seizures. Just because. I needed to know because in a few months those will be the better nights, besides the ones I sleep and if she truly believed that I could be cured, then she had better leave.
“But you’re not going to die tonight.” She said with a nervous laugh.
Linda didn’t laugh. “Yes, maybe I will die tonight: I almost died, and had 40 minutes to turn it around, with an EMT here recently, I’ve stopped breathing for 25 minutes over a 45 period, I’ve had emergent pressure on my major organs, and that is all the last few weeks,” I told her. "So yes, I might die tonight, that's WHY you're here."
Little did I know that an argument with Linda would use of my reserves and at 1:00 am I would go into seizures separated only by seconds, each one more intense than the last. My resting blood pressure between seizures, 178/167. Linda said she could see and hear the heart just stop beating for a second or two before a frenzy of beating again. She managed to massage my jaw open enough to get an Ativan in and after the next seizure it was down to 136/125 but the heart was even more erratic, more delayed.
When all I have is an eye staring at you, like the cells and nerve endings being destroyed, screaming “help me!” Does it get heard?
I know that in my future, unless I choose to overdose these nights are what will be known as the good part. I will not be medicated with some definitive progression. This isn’t Cancer, this is the part of the brain that controls everything we depend on, we need it to do automatically and it is slowly dying. Many call the crucifixion the worst agony, as a person has to stand pain in order to breathe, and when the person grew tired, they relax, hang down and suffocate. They talk about it using the word horrific. I have had to manually breath, agonizingly trying to expand my ribs, suffocating by my body weight, waiting as everything goes black and sparkling for someone ro roll me so I can suck down each breathe. To pass out only to be pinched, called, shouted, be woken to breath again, because my body and brain isn’t doing it for me. for dozens of times for dozens of minutes. And that is a good day. That is a normal day. That was today, this afternoon.
So what kind of human am I, who has to have a timer to tell me when to breath, who puts themselves in pain so that the meat doll lasts a bit longer. No hunger, no thirst, no need to pee or shit, no taste, often no sight, only emotions. No one knows what my dying will look like: Linda and my friends hope it will be quick, that if I don’t have a massive heart attack or stroke it will be less over in than a month.
Because my presentation is unique, they can put a pacemaker on my heart to keep it beating, but nothing to stop my veins from constricting and bursting in my brain. Blood is like acid to brain cells, what you lose there, you don’t get back. Kind of why I want to keep mobile, because at worse it could be months even years of a withered body, a shitting/pissing sack of meat where each month my ability to understand what is happening to me, what the incessant pain means. But with a body I spent decades of a foundation of marathons and athletic training, how much can it be beaten down, what WILL it take to destroy me? How many months of strokes and seizures lying there until my IQ is knocked down enough so that I don’t realize the horror of what is happening. Becuase when that spark goes then they can, probably will have to put a muzzle on me to stop me from screaming constantly.
So how many months or years before that for Linda to see me in constant, agonizing and bewildering pain, with me looking to her, “How could you do this to me?”
But if I just WANT it enough, then I can be cured; because there was a woman who had cancer.
I am going in the Terry Fox 10K. If I succeed, I have a 5% chance of dying that day (heart attack, weakening of heat stroke, seizures, to heart attack or stroke). If I succeed I will be in agony so extreme that I won’t be able to sleep for three nights at least. I will be in pain so bad for a week I won’t be able to hold a pen, be able to do much but use all my energy to focus in order to just be able to speak. If I succeed, I will prolong this meat doll, inproving the respiration and circulation, in order to keep getting out of bed for an extra month. Maybe.
How do we know if we are human? If you prick up do we not bleed? Well, I don’t. Not at the blood center. I feel, but emotionally. I still have fear and terror; I have frustration and despair.
I was evicted from my home this morning so a group of people from Beacon could do oxygen training. For me, I think. I went to the library to see if the followed up on whether the Juvenile section had displayed Harriet McBryde Johnson book, Accidents of Nature as I asked of them after her death. They had culled the book instead (removed and sold the hardcover for 50 cents).
I asked the person putting out books who decided to cull the books? They sent me to the librarians desk. The librarian said that decision wasn’t really theirs, they might see it but it would be made in the children’s section. I asked them if they had culled a lot of Martin Luther King lately? They laughed the “Of course not, he’s important” laugh. I asked if they culled Henry Thoreau? Or Rosa Parks? Another laugh.
I went to the children’s section. On no, the person on the desk didn’t have that power, she was a clerk, but maybe it was damaged. I told them it wasn’t last month. And wouldn’t that be replaced. Yes. Was it being replaced? No. We did the same dance on how it could have been stolen. No, not stolen, not being replaced.
She thought there was a form for people who wanted to complain about books culled. She found it. It was a form for people to ask for books to be removed. The next person came, she was a children's librarian but not a senior librarian, she recognized me. I told her, “Over a year ago I asked you where the books for girls in sports were, and where books on teens with disabilities were?” She said she remembered and nodded her head. I said that it was a year later and the central library now had LESS books on females in sports in fiction and LESS books on disabilities. They stared at me. The one woman who recognized me at least nodded in agreement.
I tried to explain, I told them that if we, all whites were in Baltimore and we only had one or two books of black teens living city life, that we wouldn’t be a very representative library of Baltimore. I had asked for literary work of the the woman, Harriet Johnson, who changed the way people with disabilities and child exploitation of the disabled are viewed to be displayed, her work to be displayed at her death. Instead, they had removed a book, a hardback from Henry Hold, in perfect condition, that they owned less than two years. It had taken 12 years for that book to find a publisher.
I said that the recent TC 10K run of 10,000+ had more women than men, yet the library had more athletic teen male fiction than female. I said that a recent report showed that one in six Canadians had a disability and yet I not only doubted that 1 in 600 books in the teen/youth fiction section reflected that, I doubted that 1 in 6,000 books reflected that. They told me the Children’s librarian who did the culling was coming. And I could always submit book suggestions.
The Children's Librarian to me and explained that I should go home (in my wheelchair) and give my opinions and views on the webpage, where views and concerns could be written down and then forwarded by the click of a button. I said, since YOU are the person who pulls or approves the culled books, wouldn’t it be easier to explain it to you? No, she felt that if I left, that would be better.
I said that the problem was that the clerks who pulled the books and librarians who approved the books didn’t have all the information to make an informed decision. The gave me the dirty look. I asked them if they had culled, Peter Pan recently? They laughed that laugh. I pointed out it might not be taken out as often. No, but it was an IMPORTANT book.
And if Martin Luther King had written a book for youth, would that be an important book? Of course. I tried once more to explain to the three women standing and looking down at me in my wheelchair that Harriet McBryde Johnson, for the disabled population WAS that important, that it WAS an important book. That Accident of Nature was, as far as I could tell the ONLY book the library had to tell kids with disabilities from CP to OCD, wheelchair users to epilepsy that being disabled was okay, and better than okay. And now that book was gone. A book which told those kids that they should set their OWN dreams, not let 'good intending' abled bodied people set those for them: that these kids were equal to their able bodied peers and could set their own goals. A book written by a disabled kid who grew up, no not to die a horrid death as implied by Jerry Lewis but to become a lawyer and live life deliberately.
The librarian emphasized that it would be best if I left the library and explained all that in an anonymous statement over their webpage (which would then be forwarded to her). I think the emphasis was on LEAVE THE LIBRARY.
Linda had come looking for me, the oxygen training was done. She helped push me home. I had exhausted myself to try to get six able bodied libraries who had as librarians, just recently had their civil work liberties walked over by a lock-out from management, to understand that they worked to remove the only written voice of disability for youth, teens and young adults. The only voice that helped me. Then they worked together, these same representatives of the library to get me to go home, to go online, to stay out of sight.
Because I am not human.
11 hours ago