Watching and waiting for me to die: I want to live.

I went down to my favorite video store. At first, I was going to wheel down there to “prove” that I could still do it. Yeah, ‘prove’ after only avoiding the hospital last night because we had the special mask for high concentration oxygen. My cabinet sized concentrator was going full bore and I still had Raynauds on both arms up and past my shoulders. I switched to the nose piece and in minutes it was dramatically worse. Back to the mask and after a meal and some liquids and five hours, I started to pink up. My blood pressure was so low only caffeine, pain and pure oxygen were keeping me conscious. Without that mask and without Linda there to check blood pressure, oxygen levels and everything else, I would have had to go to the hospital.

Then the pain, two opiate pills, two sedatives, and I slept, until we had to go down to one opiate or I would blow out my liver. I woke up almost immediately from the pain, tried other pills, woke up every 15 minutes after 3.5 hours of sleep from pain. Some of it, I found out was bruises from when I passed out after coming home from Badminton. As I passed out my head tilted all the way back and my arms dropped back, I flipped the chair and bruised my arm and shoulder (my head, nah, it’s fine, well except for the MSA thing). I kept saying, “I just did BADMINTON.” So much for taking that boxing class this month.

The pain interferes, it makes it hard to remember things, to remember anything, even things people say a few minutes ago, and it makes it hard to find words and to talk. It is like all the neural paths are blocked, pain makes a wall; creates a traffic jam in my head. Yesterday a man came upon me while Linda was downstairs getting them to find the key to let me IN (as I cannot go up the stairs like everyone else, odd that). He was concerned I was lost or in need. For over a minute I could not say a word, I gestured downstairs, I made vowel sounds, I went from pleading looks to ‘okay, let me start again’ looks but when people, any person, asks me a question it is now the hardest thing for me to access language. Going, “Aaaaaaaaa, uuuuuuuuuuu” for a minute, I found, is NOT the best way to convince someone you are NOT a completely feeble twit in a wheelchair who needs SOMEONE to be her keeper.

At the video store they cut my overdues in half because they know that I am dying. Sort of a super crip card. They don’t know why dying makes my videos late, maybe I vomit blood and pass out or something, but they accept that the late videos and me dying go together. Or that I never used to be late and now I am late all the time and I LOOK really sick. In fact, the staff don’t tell me about new releases for next month like they used to, and they, like Linda, like the home care staff, like everyone including me is watching and waiting for me to die. I can only come down to the video store, which I used to fly down to once a day, once every week or two. No one asks where I’ve been. Eventually Linda will come in to the store after a delay of a month or two and one of them might ask how I am doing and Linda will say, “She died six weeks ago.” And they will nod and say they are sorry but they nod because they expected that.

In fact, Badminton is the only place where I am known as a sportswoman instead of ‘That woman who is dying.’ I am accused of cheating by throwing myself out of the wheelchair to hit a birdie while in midair or that I bought a supersized wheelchair to make my reach longer. I am known as competitive; I am accused of psychological warfare (justly so). Yes, I am going to go back there.

There were for me three stages, or four, in my life as a disabled person. First stage it was kind of sucky but also kind of fun, because I got to try out new things. And I like new things. I got to figure out how to do things, try new equipment. I did a wheelchair race in a racing chair and won $100. I spent the money on gifts to send out to people. That race I won now rests in the hand of someone who holds a carved little round box and thinks of me. I think that is the right legacy.

That first stage had paperwork, but it also had advocacy and there was fun and going places. It was a pain in the bum to fight with hotel managers but it was also doing things I had never done before (like jumping a wheelchair onto a Tokyo Subway!).

Then there was the 15 or 16 months lost in tests and hope: going to this specialist, going to that one, waiting for this test, waiting for that one. Of course, I KNEW that it was MSA (plus a few friends who jumped on board my autoimmune system for a ride) but maybe the Americans who do seem to have these clever medicines and stuff like IVIG, would know what to do. And why not live a few years, after all, if I didn’t have the autoimmune version of MSA, the one where people died so fast they had never been able to get a test group together to TRY drugs on them, then I could have four years. And when you are 18 months in, or 22 months, then four years sounds like a LONG time.

Then there was the lull: a few months were I had nothing, no tests, no more doctor visits, no specialist, just sad attempts at pain control and everyone covering their ass as best as they could. Winter was here and yes, new horrible symptoms appeared. To give you a contrast, in MS, you can use so much energy that once you stop, you can’t even move. In MSA, because the little guard or signal to say, “Hey, stop now” or the feeling that you CAN’T keep going anymore is gone, as it has been destroyed or EATEN, I can keep going. So then I push to do just a FEW more postcards and when I stop, the energy for my heart to beat has already been used up. So it beats erratically and I have to lie down right then and use up 4 times a days worth of heart meds to stabilize me enough to sleep. I can talk until I pass out, and sometimes, because I CAN, hour after hour, day after day, use up ALL my reserves, the amount of time until I don’t have enough oxygen converting in my lungs and going to my BRAIN to keep me conscious, is only 4 minutes. Or I pass out and the energy to keep my ribs expanding is gone, and that has to be done by someone manually. It is hard to grasp, to understand that I can literally, and without knowing, talk myself to unconsciousness, even death. And I would feel nothing, because the part which says, “Oxygen deprivation!!!” and you feel like you are underwater and need to get to air…..it is gone. In fact what we consider almost every BASIC SURVIVAL signal for the human body, is gone. Autonomic Failure.

So the final stage is waiting to die, while those around you go to support meetings and read grief books. And you just try to get on day to day, while people watch you, and I watch myself, waiting to see what new symptom will appear and how much closer am I?

So I, when I wheel around, when I am online, I see things in a clouded way because I too am waiting to die. When I buy something on ebay, I pay too much because I want to know what it looks like and pay right away and hope they send it and that I am still alive when it arrives. I don’t wait for the best deal. I cannot save until tomorrow because there IS NO TOMORROW. Or should I act as if that doesn’t matter, try to order things that may not come for a month or two? Is that being sensible, or selfish? Am I in denial, or am I living as if I plan to live? Should I have excitement about a TV series, about when will this TV series come out on DVD? When the reality is not only, “Will I be alive?” but “Will I have ability to understand it then?” When I say I want to live, I say, “I want to go to Hawaii” which thanks to a gift, now has a fund, a little pot and like Tokyo, I am about to sell almost all of my manga to add to that fund. And then I will sell DVD’s and what I can, with the energy I can. So I am defiant, I am saying I want to LIVE….but what is that really, a few months?

There is no hope and I have no hope. I have no hope. No one whose main objective in going to another country and paying up to $1,000 to get a note from a doctor saying you are going to die in less than six months so they can have a better quality of life has hope. Hope is gone.

And yet, I don’t know what to do. Should I act as if I could live for months, order things for the long term, or live for today? Should I blame myself and feel the burning shame because of the money I have spent on stickers and stamps and postage stamps for postcards that will mean WHAT to Linda when I am gone? What will she do with them?

No one wants to talk to me about it. They want to support me. But what should I do; I HAVE tried to escape the present by going on a little shopping spree. That didn’t help. I have tried to look to the future by ordering things and having to wait until they arrive. Except then I forget I ordered them and don’t know why I bought it. Or I forget I ordered them and I order them again (that has happened MANY times). Or I am told it is backordered and I become insanely angry; I want to scream down the internet, “I am dying you idiots, I cannot WAIT for a back order.” I have tried to act as if I will live until May, when all the air conditioners are dragged out again, when I sleep ON ICE, in a vest OF ICE. And this time, I WILL be too weak and I will die.

Currently, I feel no pleasure, or little, I have very little joy. I live in a pain filled waking coma. I have pain, and I have tasks and when I am tired or in pain, I cannot talk, I feel as if I am carrying boulders in my mind, just to get out words.

Linda sat across from me today and I told her: “I want to go back to boxing.” She was surprised after the hell of last night but I said, “I know, that I will be slower, and weaker but….” And here I couldn’t find the word or words I wanted but Linda waited and she said finally, “But Ian understands.” And I nodded.

I said, “I know that I will be humiliated, going back to the same people so much weaker, but I want to….I have to know (to know if regardless of it ripping my muscles apart it might help me).

“….I don’t care how much humiliation I take, I don’t care about the pain.” I tried to steady my voice but I couldn’t, “Right now, I have no hope, I am waiting to die, you are waiting to see when I die; I talk to the lawyer a couple days ago about my living will and when you will give me a morphine overdose. Then on the phone I make out my will; I hear from my government manager what I need to do in order to die the government way. Everyone is waiting to see when I die.”

I paused and I looked around. “I don’t want to die.” I said it again and the voice was raw, ragged and honest, “I don’t want to die.”

I continued, “It is like someone is asking me to leave everything I care about, everything I know, and all the people I love in a moments notice. I know why this is happening to me….and you. I believe that God thought I could change: that I had potential.”

Linda said, “You have changed, you ARE a better person.”

“I think so too,” I said as a tear rolled down my cheek, “But did Lazarus WANT to die?”

Linda shook her head.

“Lazarus was afraid, and he send a message for his friend, who NEVER came.” I said. “The first question I will ask (whatever is after death and whoever I see) is “Why? Not why did I have be disabled or ill (that has been one of the great blessings of my life, to find people who care so much and to find a way to articulate my caring to others), but why die?”

I was crying, “A year.” I said. “A year would be beyond hope, beyond anything I can or have imagined up to now.” Linda’s head was down, and she was crying too. It was beyond what she could imagine from our day to day.

“I don’t WANT to go to heaven, I don’t WANT to rule Galaxies or rule people (I was referring to many various beliefs on post death including the taught Christian ones), I WANT TO RULE THIS ROOM.” We looked around. “I want to rule this room, I want to be able to read these books, I want to be able to watch these DVD’s, I want to play these games, I want to move beyond this chair. I want to move boxes for you, I want to stand up, I want to sort books and do a book faire…….I want…to touch your hand.” She looked up and we both were crying. “I want to rule THIS room.” and then the sobbing took over.

I was on oxygen as I had been since 40 minutes of getting up.

After a time, and a blowing of noses, I said in a voice that meant I knew what I was saying but I didn’t know how to do it, “I want to stop waiting to die.”

“…and I want others to stop waiting for me to die, and I want to live. Not denial, but a real chance at living. I don’t care what shame, what public or private degradations, I don’t care what I have to do, to get a year, to be as I am now, and live for a year and be with you and see things with you, and have a year in this room…..” We were both crying again and holding each others arms. This was our impossible dream, that time could stand still. That I might be below what most people would consider the threshold for ‘a merciful death’ but if I could, in order to live one year, I would stay happily like this (with better opiates I hope). But we both knew that we could NOT make time stand still, not by wishing and we did NOT know “Why?” except that I was dying.

I continued to talk, “I have to go to badminton. You know how I used to go and then say that getting the cardiovascular system going was going to prolong my life. I DIDN’T KNOW!” I shook my head. “But now I HAVE to try. I have to go and go and do two games, not three just two games until it stops hurting so much and then I have to do boxing. (and we both knew how close I came last night just with badminton; I was dying, slowly dying because there wasn’t enough oxygen to get to my brain and my lungs weren’t working. If it had been any worse, there is nothing they could have done at the hospital but the same thing we did and then watch, to see if I went into a coma and died). I HAVE to, I have to try.”

“I have to do it because I want to live, to live instead of just having people wait for me to die. Let them call me a liar on the comments, I don’t care, let them want their gifts back, they can have every donation back when I die from my death money. Because I have no hope, because…..” And we held each other around the shoulders and cried because she understood what I was saying; that I wanted to do this, for me, for us, to find a way, ANY way to have that promise of a year. Just the promise of it would be a blessing beyond what we could imagine.

That was a hard conversation. It was a real conversation. It was in daylight, not in the night when fear comes. It was the statement of a person who is tired beyond belief of the filter of death.

I call my bed, “The death bed” because this is where the pain is (from the weight of my body on my spine and torso), and this is where I WILL die one day. I hate going to bed, because I don’t know if I will wake up. Because I do know that I will hurt, and I will have nightmares and my body will hurt and wake me in pain for yet another day. I know that I will cry, or tears will spring to my eyes spontaneously from the pain. It is the bed of death.

Reason to live #12: Because I no longer want to be the woman who everyone knows is going to die.

That’s a really crap designation. I want to ASPIRE to be the woman for whom things are painful, and difficult, and dangerous because I COULD die if I screw it up, but maybe I won’t. I want to be the person who plans things, who accepts help, who is selfish enough because it keeps her alive. I want to live and be known as that person, the one who probably should die, but no one is laying any bets. Not to live as if I am not going to die, not to live as if I could not die, or that I should not die, but to live and do what I feel I need to do in order to stay alive.

And to do it over and over and over again, and for long enough and with enough conviction that people start to believe it.

When I came back from the Video Store (with videos I have not seen as I have been working all day!), Linda said, “Let me help you” as the carpet is horrid to wheel on. I hesitated while I pushed on for one turn of my wheelchair wheels and then sat back and said, “Thank you, I think I don’t need to prove how independent I am to this carpet today!”

Hey, it’s a start.