Pain. Last night my pain was so severe that I used up the 24 hours of pain medication including my ‘breakthrough’ pain medication in the first 4 hours. The weight of my body, my limbs were crushing me in pain. I used my sedatives, a day’s supply, to try and get sleep. When I did it was of a guy hunting me down and hitting me with a baseball bat, or being thrown off the side of a building. In one unusual dream I was on board the Shuttle Challenger as it blew up. I used every opiate and painkiller I had and it didn’t stop the pain. I used all the nerve blockers and it didn’t stop the pain.
Nothing stopped the pain.
I groaned in my sleep, I groaned myself awake; and begged for more pain killers only there was nothing for me to take, not for another hour if I did not want to die of liver failure. How long does it take to die of liver failure? Three days? But I get my pain relief now? Great!
No, I was told.
But now, awake, as much as I feel like a cat who has been petted the wrong way for MANY hours, this is where I want to be. Alive. Alive and with my daily battle, how to make the greatest choice a human can have: to make a positive difference. I can, in my way, fight against apathy and the voice that says inside, “it is too big”, “you don’t matter”, “you can’t make a difference.” Last night, because someone fought for ME, I had extra padding on my bed: I was cradled as an egg. My pain was bad, but I was able to get some sleep. Hundreds of miles away, THEY had eased my pain, as they will ease it tonight. They fought for me when I lay helpless. They were there for me.
What or who do you fight for? If you are not struggling, whether it is to make yourself, your family, your friends, or your community, into something better, then perhaps you are already dead. Being a parent is a struggle, being a good partner is a struggle. Following your dreams is a struggle. Loving someone and being a good friend also means you will have bad times, you will do something stupid, you will cry. It HURTS. But it is worth fighting for. I know. I know.
I have almost died/died or been revived several times, but I’ve never been the one to fight, to be awake to pay ALL the cost. This time, coming back from Seattle and at Cheryls’ house I was the one fighthing, for hour upon hour. If I wanted life, I paid.
I was desperate. Not desperate people get when they are late for a ferry. Desperate like needing a miracle, and needing to make it happen now.
Because if I did not figure out how to put two systems back in line before I slept, it seemed, and after a few hours it became VERY clear, as the bright red blood was pouring over me, over my hands, that I would die. Not just pass out and let Cheryl and Linda deal with it. Dead. I was desperate to do things previously unthinkable, overcome phobias: if I needed to shove a needle into my heart, I would have done it. I was shaking, in shock and I couldn’t tell Cheryl or Linda how bad it was. I hadn’t told them in the 145 minute drive that my left leg was useless, my right leg becoming so. They were worse than useless, as muscle groups were locked, due to pressure on my spinal for hours. It was agony and I think the muscles were so tight in one calf section they ripped apart from the tension: one strand shredding, then another. But that agony was secondary to dying. “Just get me inside” I begged.
Agony was living. I had to figure out how to stay alive.
Somewhere after five or six hours of trying and agony and nothing working we took a break, and tried a short nap, though my breathing was cutting in and out. It was a gamble of a chance death over the growing probability I would soon fall over and bleed out. It was a prayer.
When I woke up, I was feverish, hallucinating and I still had to fix my body up. I had some horrific problems. I tried again, with desperation to do what needed doing, and this time it worked (EDS people, I now have some idea of what you might go through). I did not know if I had been internally bleeding for the last hour. If I had I was already statistically already dead. Because from my reading, at my level of anemia, any anesthetic and I wasn’t coming back out. So I was carried to the bathroom and waited to see if a liter or more of fresh blood poured out of me. If it did, I would have to go to the hospital because they were my only chance of living, to find what had ripped open inside and burn it closed, all without anesthetic. How much blood had I lost already? As once they put me out, would I ever wake up again. My research said no. It takes blood 21 days to replenish...if a delay in producing blood isn’t what is causing the anemia.
But there was no fountain of blood. It had healed somehow, some dark binding blood and that’s it. And only then did I let Cheryl check my abdomen for rigidity (sign of internal bleeding). My skin so thin she could feel the coils of my intestines. I was on oxygen the whole time but by this time my hands and fingers were purple/blue and I didn’t know if I was de-compensating (dying) or just if my body had pulled all reserves back to the core, abandoning my arms. So we slept. That was my second prayer.
I woke up. I couldn’t control my limbs but I woke up. I was alive and it was daylight. So I decided we were catching the ferry in 95 minutes. Nothing like exerting a little insane control to try and deny that sometimes we have no control at all. I had treated Cheryl badly, less as a colleague than an enemy, someone who might figure out how bad it was and call an ambulance and I would be dead and Linda would have a bill. Of course when you are delirious and hallucinating, it is unclear how clever at hiding things you really are. If I made the boat and lived for 60 minutes we would cross into Canadian waters, and the rescue copter and hospital would be paid for.
On the boat ride back, I entertained a 15 month old who played peek-a-boo. I showed her the pictures from the postcards I had with me. All still lying down. Still hooked up to oxygen. And I finally understood, what it was to lay down your life. To fight and spend your life with purpose.
I am alive. I should, with my memory problems; my health problems and my financial situation live a life in total fear. The only reason I don’t is because other people carry my burdens for me and fight for me. I was able to eat lunch because someone bought me utensils I can hold. I am alive tonight because Cheryl has watched over me, she knows when I am likely to stop breathing or when I have a fever (as I did off and on until this morning). I can sleep because Linda watches over me, literally carries me when I need it. Others watch over me, from helping me with the postcard project, to writing me weekly, to calling me to let me know that someone out there gives a damn. They haven’t given up on me. And if they won’t give up on me, I won’t either, however much my inner voices tell me I am not worth fighting for at all. For I am a thing, an animal, a sub-human. I don’t always look like a human, I scream and grunt and breathe in short choking breaths at times. I turn odd colors, and this planet doesn’t agree with me that much. I fight against my voices to give proper value to the gifts and sacrifices others make for me, on my behalf.
Spending our life is something we do everyday, sometimes in frustration (traffic!), and sometimes (more rarely) in deliberate action. But it is spent either way.
When someone spends part of their life for me: whether that is the money they have earned, the time they spend writing a card, or making or shopping something for me, deliberate acts people have done: this is a gift of greatness. Thank you.
I will try to list, another time, the long list of people who have done what I believe is the spark of the divine in humanity; to lay down their life for another.
No, not to die, to lay down LIFE, their life, the time they have to spend, they spent on me. They laid it down for another. And the other was I. I know of no way to give adequate thanks for that. But I can recognize it, honor it and emulate it.
I have run into people, recently, who are sick, not sick in the way I am, for all I have is pain and a body going to rot, but I LIVE. They don’t. They let others spend their life, they have decided not to fight for anything, including themselves. And they think of this as good, as normal. It makes me angry. No, it is not normal to ‘accept your bit’ and let it lie at that. Or to think politics and morals are the same. No law can contain the human body; lawmakers can only show their ignorance by deciding by law that one human is property of another, or one human is 3/5ths of a human being. Or that humans joined of different sexual orientations are not equal (Doesn’t God get a say….nope, the state constitution overrides God it seems). And that those who are disabled or elderly are to be weighed in economic terms.
When I first became severely disabled I asked, “What purpose do I serve in society that justifies the costs of my existence?” See how I had accepted the inequality of humans (of course, the same argument was made on the use of child labor 150 years ago). I am a human being. That society does not know how to incorporate me and others like me into the spectrum of what is human experience is not my fault. I hope Society can grow up, can learn, but the disabled, the elderly, the dying are still equally human.
In our culture, we DO treat the dying as sub-human. There is a circle of life (not a straight line into infinity, sorry to disappoint) and while we treasure and have protections for those who choose pregnancy and children, we have nothing really for those who are dying. Yet, it is the same circle. It is just there is no place for us. No societal aspect in which we are accommodated or even expectations we would be out in public at all! You know the one word I was too ashamed, too socially pressured not to EVER say for all the time I was away from home, the word I can only say on-line and in my own home. No, not ‘lesbian’, I can say that fine, I can shout it along with ‘Boobies!’. It was ‘terminal.’ Over and over people projected onto me that I was just like them, just sitting down and I let them. They acted as if I was stupid (“So you’ve….taken….a course at university?”), or if I was heroic (“That’s the way to show them”), or a stereotype, (“Are you wheelchair BOUND?”) but I never said the truth. I’m dying. I’m terminal. I have a degenerative condition. Because I knew they would have no way to deal with that. And socially neither did I. And yet, it is a shame because we are all dying. Only it is a few of us who know that, and the rest, well, they just stare in surprise.
I wasn’t doing anyone any favors by staying in the closet about death and dying. In fact, my denial, my need to feed their vision of me probably helped facilitate my OWN delusions and brought me to the closest I have been to dying while conscious.
On the ferry I thought of the Greek and other city states, who had a designated group who were those who helped decide the rights of the city against other cities. In one specific city, the women learned the sword, the men the spear and the armor to crush. These were people for whom all knew that someone would die every time they marched out. They fell in love, became friends and lovers, and then that group marched out and killed another’s lover or did not come back themselves. I am a pacifist, and an idealist but I can understand the appeal and ease in which one simply is, to represent your friends and family as you go to fight. It is harder to live, and to lay down your life, every day. People are broken. Children are broken and scarred. This is not fixed by marching out to kill someone: it is fixed by laying down a part of your life over and over and over again.
The things worth ‘fighting for’ are we, our lives and how they are spent. This is what I see in people. What I see reflected in those I know. They fight to remember that they are spending their life deliberately, laying down their life and that it matters. They fight while working long hours in a hospital; fight to save animals who are abandoned and in pain; fight to save humans who are abandoned; fight against yourself and your disease to BE there for those who fight for you. There are those who fight to have clean blood so that when, as I have been bleeding almost constantly since late Monday, as I may need to go to the hospital soon for a transfusion, that blood will be there. It matters. You have to remember that. Yes, it is a job, it is politics and jerks; it is dealing with a disease that never quits, that punishes you for nothing at all. We keep on because someone like me waits. I wait, for that blood, that letter, or for a smile of greeting from you. And when you have HAD it with the kids, when you have an argument with a friend, when you are hurt and instead of speaking what first comes to mind you think and remember the love you have for them. That is fighting within you for something that matters.
When I was able bodied I was a fool, believing that ‘once I get my job teaching’ or ‘once I get tenure’ or ‘once I get a deposit on an apartment for Linda and I, THEN I will make a difference.’ My disease has many gifts, the pain I love not so much. But I love the freedom, and the insight. For now, with all the power in my being I fight. Because there are so many things worth fighting for: things for which I am going to lay down my life.
Every postcard is my arrow, my act of resistance. Every package, every note, every email is my attempt to drive back this idea that somehow people don’t matter, or some people don’t matter or that people don’t matter equally. Like I said, it is a sickness. And it is my intention, entirely, for my next trick, to live a good many years, which I believe is possible, if only I were in charge of all the hospitals and could get things done (nice dream eh?). But if that doesn’t work, I will work my havoc here and there. I am taking GOOD care of this body, as I have another 1000 postcards to write. I will tell people over and over again that they matter, until they realize one day that they have been telling people the same thing because it IS true.
I do this not because I am in any way sanctified. But because I am one of those people who are broken, and maybe, because of the people who fight for me, that which is broken will heal a little.
Then one day, I will ascend to human. And I will matter.
23 hours ago