I am feeling relatively pain free (thank you God for all the flowers of the field, and in particular, the POPPY!), and though I had an “episode” today in public (actually two), I am feeling pretty upbeat. So today seems a good day to talk about dying, or rather what is it like having the “you’re dying” label.
First thing I want to point out is that EVERYONE is playing on “Team Terminal.” The difference between you and me is that you don’t have to think about it, it is far away and by that time they will have created robot bodies for your head to be attached to. I on the other hand took the spooky turn and am on the winding road that is full of fog and has signs like “Terminal City Ahead: End of the Road.” So while YOU could be run over by a bus tomorrow, it doesn’t worry you at night because there isn’t this little voice in the background saying “You’re going to die!” (unless you are a goth, of course). But that is actually just the first month or so. Then the whole, “I’m going to die” moves down the scale to simply fit in with all the other things that define you and it rests between, “I am left handed” and “Why am I so addicted to anime and manga?” The “maybe if I stay frozen like a deer maybe death won’t see me and run me over” moment is gone and life is still there. You find that you are able to get depressed over entirely OTHER issues, like “Why are there SO many crap reality shows?” and “Why does it rain all the time?” and “It’s barely winter and I’m already sick of soup.”
Indeed, the whole, “yeah, I’m terminal” would love to slip into the subconscious or be happily denied if I could only get, say, two days of feeling normal. I have a whole bag full of denial I haven’t been able to open yet. But once a week or so there is an “event”: a feeling really shitty, a so much in pain, a feeling of my heart being squeezed out for juice (for an hour!), some crappy night or terrifying incident. And that is when that fog on the road to Terminal City blows away for a moment and you see the twinkle of lights ahead. And you think, “Is this it.” Because all I need is to not be able to breathe for four minutes and that’s it. And sometimes, when I am having one attack after another and it has been going on for an hour or more and I can’t move, I can’t speak, I can hardly breath and the pain is mind-blowing, I try to stop breathing. Honestly, more than once, let’s say MANY times I have sought out the darkness of oblivion, not knowing if it was to be unconsciousness or death; I wanted, no, I LUSTED for the darkness, to simply be out of the overbearing HERE. But Linda or home care or a health professional always brought me back. It is hard to seek out the darkness, when you hear Linda saying, “I’m here sweetie, just breathe, just breathe.” Oh crap, I guess love wins again!
There is the personal side and the social side meaning, what goes on inside your head versus how other people handle things. It seems that the more integrated my diagnosis and I become, the more difficulty people have with my being terminal. When you go around in a wheelchair, have oxygen, pass out, go into spasms, and get laid on floors on a regular basis (twice so far today!) people want to know what is up. You can’t exactly be reenacting Beaches or some 90’s AIDS film where plug on heroic and act normal until you throw a party to tell all your friends. I mean you just drooled all over the floor of the coffee shop, you kinda have to tell the staff something! And besides, I don’t like lying, I find the best way to be an open, honest, friendly person with a sick sense of humor is to be just that. So yeah, sorry about spazzing on your floor, I’ve got an autonomic dysfunction, it makes my heart, and lungs, and BP, and other stuff go crazy at random times.
The questions you get are so standard I sort of want to make a card: (they want to know what it is and when you will get better. You can AVOID the subject of ‘getting better’ for five or six questions as they hammer away at you, but why?) So yes, it is terminal. No, I’m not getting medicine to cure it because there isn’t any. No, I haven’t given up hope. No, I actually spend my time trying NOT to think positively, as I find it depresses me (that sometimes confuses them enough to go away). Yes, I’ve tried acupressure; because of my condition it tears my muscles. No, let me explain again, there IS NO CURE; not in the States, not in Europe, no cure. Yes, I’m sure they will find a cure soon except all the research studies currently being done are to find out how quickly people like me die. I DO live life to the fullest, what do you think I was doing drooling on your floor? No, honestly, there is no medicine, there is no cure. No, radiation doesn’t help. Yes, I take vitamin C. Yes, I know I don’t look sick, and hopefully I won’t; right up until my heart explodes. No, even if I do exercises, I can’t get out of the wheelchair. Yes, I’m sure they are very good exercises.
The thing is that until people SEE you doing the funky chicken, they have a really hard time mentally accepting me as sick. They can understand I might have some nerve damage or something but if I were terminal then I would look all wasting and have lesions on my face (these ideas from the people who have seen too many AIDS specials). AFTER they see me do the funky chicken, the first words out of their mouth each time they see me is either: “You are looking good/looking better today.” Or “Have you heard anything else from your doctors?” I mean, they’ve seen me doing the funky chicken, they KNOW now that I have something weird and WRONG, but geez, they put a man on the moon and now we have tennis shoes that can be MP3 players, surely “they” must be able to fix what I have. This puts me in the horrid position of either being a wet blanket and saying “No, actually, I’m losing limb function” or “Nope, still dying, thanks!” or the emotional burden of ‘cheering them up’ falls on me, so I hedge with “Pretty good day.” Or “Some good days, some bad days.” Or “Well, I’ve got a few more tests coming up, let’s wait and see what they say.” But I feel that with the limited energy I have, I don’t want to spend it cheering up people who are depressed because they don’t want to believe I am terminal. WAKE UP! We’re ALL terminal, mine just has a name, okay!
What do I want? I want people I can tell the truth to, I want people I can tell what really happened last night or yesterday and try to make a joke out of it and they won’t get sad looking and quiet. Yeah, bad and painful stuff happens to me; bad and painful stuff happens all over the world. But here I am buying my coffee; and I’ll probably be here once a week buying my coffee for months or years; so lighten up.
As for me, no, it doesn’t sink in all at once. I would like to have ONE long remission, at least three days or a week where I DON’T get slightly worse (I asked Linda, she can’t remember a week of not getting worse). How about a month? That would cheer me up immensely. But other than that, I have these odd bits. I am not going to download episodes of the TV show Bones because it is cheaper to wait until next summer when the DVD box set comes out. “What if you aren’t healthy enough to watch it next summer?” a little voice asks. Ignore the voice. I look at my thousands of books, several hundred so rare I bought them so I could write research papers on them and have an academic career. I haven’t even read them. I’ll get around to it when I’m not blogging. No, I’m not selling them, I’ve got my whole life to read those thousand books..........oh.........oh shit. Well, I don’t care, I’m not selling them anyway! They’re mine!
I was having some pain and problems sleeping and Linda was holding my hand. I told her, “I know it seems odd the way I almost defend MSA, how I shut people down who suggest it might be something else.”
She murmured assent.
“The truth is,” I said and my voice started to quiver as it does when you are in the dark, at night and in pain, “that I don’t want to die so much, but I can’t live like this for 20 years. I can’t, I just can’t.” She gave my hand a squeeze. I continued, “The pack of pain pills the doctor gave me, six months ago it would have lasted two months; it’s lasted less than two weeks. What is it going to look like next year?”
“Go to sleep” she told me. “Think about other things.”
But I can’t. Sometimes, particularly after a bad attack or a long one, or a series of painful days where I sit helpless waiting to be carried, I ask every home care worker. “You’ve treated people for 10 years, tell me, what will things be like in six months?” They all say the same. They’ve never seen anyone with as many symptoms simultaneously as me. Sigh. I feel like Emma Thompson in the film Stranger Than Fiction – I want to go visit hospitals, peering in peoples faces, looking for some, I dunno, some spark of recognition, someone who can tell me what happens next. I also see myself, like Emma Thompson getting thrown out of the hospital for the same statement, “No, no, no, these people are sick, they aren’t dying, where are the dying people, I need to see the dying people.”
I went to a group that has access to funding from the Federal Opportunity Fund; for people with disabilities to get back into the workplace. They give you a “coach”, they give you adaptive equipment like voice typing computers, and they will send you to school for up to two years. They only get the big pay-off from the government when you get a job. Therefore I trust them – they don’t have time for endless meetings. Neither do I. The orientation meeting jammed 12 people in a small meeting room. I lasted 22 minutes before passing out (it was HOT, do the freaking math, this is a group for PWD and you don’t think of heat intolerance?).
I got a one to one with a “private coach” and signed up. She saw maybe the agency plugging my writing to different places where I could work from home. I said that was attractive but that also, I wanted to go to school. I wanted to be around people. That yes, I have education, I have six degrees but what I don’t have is time, and interaction. I want to do something that makes me excited around people that are also excited. And anything beyond that is gravy. What I don’t accept, and what the people who knew and know me don’t accept is that the life I spent years and decades creating; the academic oriented life is gone. I still can’t think about NEVER standing on a fencing strip again without misting up. Okay, that idea of what my future was going to be is gone, but I’m not gone. Send me to art school. Send me to teach high school kids creative writing. Send me somewhere to do something that I can care about and with people I can care about and who care about me. I want to stop at every roadside attraction on the way to Terminal City.
But for the 12 hours I am awake each day; it is mostly mundane. Get up, read and comment on the blog comments, get dressed, try to explain the concept of “String cheese” to a non-english speaking home care worker, drink Gatorade, take a nap, try to get up from the nap, bang on wall for help. Then do something with Linda that isn’t about work, money, my family, her family, a fight or other crap. Tell her my crazy plan of the day; see what she thinks. Watch something together if it is a good day. Plan to go out on the weekend. Be put in THE CHAIR in front of the computer. Linda wraps my feet with a blanket. She remembers I am supposed to take out my contacts while I still have finger function. Edit the blog for today (or start writing it). Watch some US TV – decide that I still have WAY too many brain cells left for The Ghost Whisperer to be an interesting show (EVERY EPISODE IS THE SAME!). Write an email. Take more pills. Go to bed. Wonder if I will ever get to meet any of the people who read my blog. Wonder if I have a medical appointment tomorrow. The day is done.
5 hours ago