I didn’t do the 8K this weekend. I didn’t do the 8K because no one, not Cheryl, or Linda or myself believed I would make the finish line. Believed that I was in sufficient condition to finish the race, and believed it was more than a 50% certainly I would be in hospital. So I worked, as I did for the last several nights, past 5:00 a.m. doing things like postcards or getting the blog finished (20 pictures, the last one). Instead of being honest, I gave you the posts of what I thought what you wanted.
I am afraid that people will leave, because no one, not even Linda or Cheryl can talk about the things that are happening right now. One of the recent days, Saturday I think, I woke too weak to speak, or move my head, or use my arms. I have to be carried into my wheelchair, then pushed to the chair in study and carried into that chair. What does that mean? It means that until I take a lot of pain medication, quadruple what I had a few weeks ago, I can’t use my hands or arms, that takes the morning. I can’t hold my head up and I pass out, and come back, then pass out again. The first Lesbian Sleepover had those conversations, but it also had more seizures, more grand mals in one night than I have had in the rest of the week combined.
And then, I think yesterday, I died. Or to be exact, I stopped breathing on my own for a very long time. Four minutes is enough for permanent damage. I stopped breathing for about twenty minutes. During this, my heart, very weak stopped and started. Linda, did mouth to mouth while I was unconscious, until Cheryl found the Ambi-bag. The Ambi-bag is for EMT’s to use until a person can be ventilated (a tube put down their throat and they put on a ventilator). I have had short periods of stopped breathing, I had experienced them earlier that day. Linda sleeps besides me, and listens as I sleep, waking as I stop breathing, and waiting until a time passes or I start breathing again. Many times, there is pain, or pressure, or a desire to breathe, but I just don't have the strength to breathe. This time, I would be brought to a haze of semi-consciousness, but all I felt was total exhaustion. I had no need to breathe: I only wanted to rest. I had no will, no fire, no fight, I couldn’t do it anymore. I couldn’t speak because I had no control over my diaphragm but at one point, with the air pumped into me, I whispered to Cheryl, “Go” meaning, ‘let me go.’ (Picture is called ‘Wreath’)
They brought me back somehow, and I probably tried to continue what I was doing. Later I asked Linda, “When are we going to talk about it?” She said we needed to go to bed right then.
My heart is failing, right now. Every beat, every minute, it is weak and does not beat consistently, and often simply just flutters, doing nothing. Without the heart masking pills, I have unimaginable pain (I would scream and scream, but without my heart I can't breath). I think of the woman in the book in To Kill a Mockingbird, who wanted to die without morphine addiction. Because it is all I can do to hold on from when I ask Linda for another pill and when it starts to work. Yesterday, due to a system failure, my lungs started to close off, an inflammation of some kind. We had an old inhaler of Linda’s and I was able to breathe again.
Why don’t I go to a hospital, where they would put a tube down my throat and keep me alive? Because in all honestly, I don’t know what to do. It turns out there is quite a difference between being terminal and saying, “Well, based on my rate of dropping, I don’t know how many months I have left.” A big difference between that and saying, as I said, when I was placed into bed, my body arranged, my bed inclined for breathing in hopes of limited recovery, “Tell Cheryl I’m sorry, tell them I’m sorry.” I just didn’t have the strength to go on anymore. I felt, that by dying, by giving up, I was failing all my friends and people who read here. You are the “them” I was talking about.
Cheryl and Linda had talked after they had gotten me back breathing. Linda was scared but she didn’t know if she, if they had done the right thing. Cheryl didn’t either. To see me every day in such pain, and to keep bringing me back, again and again. This time it wasn’t a bit of aid; if they had not acted in a steady and prolonged fashion to keep my lungs filling with oxygen, I would be dead; my face wouldn’t have been pale, it would have turned a peculiar shade of grey.
So, the exact particulars of a Do Not Resuscitate aren’t abstract anymore are they?
What is this? This is the picture of the world without Elizabeth McClung. Because that is all that will remain, an empty room.
I am not ready for this, dying, even the requiring, many times, close and continuous help, and that includes 24 hour assistance. I am not ready, but it is here.
It has been quite the week.
I want you to know that when Cheryl had to go on Sunday she left with every postcard request and every other postcard selected this week done. I wrote every single one. I selected every single one. Every package for this week was done. I have hoed to the end of the row; I kept the promises I made. I remember at one point, I think I was lying in Cheryl’s arms, and I tried to explain. “How can I not keep working?”
I think she said that I was literally killing myself. We were both crying
“In an age where everyone is trying to trick people to give their personal information.” I said, tears rolling down my cheeks, “they GAVE me their personal information. They took a chance. They trusted me. How can I break that trust?”
I mean I always knew that this wasn’t a ship I was getting off of. That when the time came for someone to make sure everyone was safe, or someone had to stay behind, to make sure that no one else would come to harm, that would be me. It is why I was born: the sacrifice. But if you call, across the distance, and I hear you, I will come, in some way, as much as I can I will be there for you. Cheryl had been worried earlier this week about my not being here when she arrived (yeah, sorry about the hiding of my physical, pain levels and mental state). I told her, “Say ‘I need you.’”
Say, “I need you to know you will be there until I come.”
I said, “Now, I’ll be here.” Everyone else first. That’s the rule. Only now I am locked in a room where I don’t have those choices anymore. The room is a metaphor for my body. I can only wait. In fact, I don’t know how many choices I have at all. And maybe, very soon, I will be in hospital for a longish time.
I promised Linda that I would go to bed early, I would sleep more, and we would leave this apartment. She can’t remember when I was last able to leave alone. We would go to the ocean side path, me wrapped in my blanket, and she could push and we would remember, what used to be. That this is where I trained for the commonwealth, me running with her keeping pace on her bike, the same trails where we jogged together after we moved back. We will go out, and remember.
Then we will come back, and soon, we will talk about how much more I can take. How much more I want to take. It will be a intimate but difficult conversation. She feels that she is keeping me here just for her. That to see me waking in agony, begging to be let go, to have them stop reviving me is her being selfish. I don’t know how to explain that the flashes of anger and frustration come from pain, or that I look in front of me for tomorrow, or the day after, or next week and I don’t see, I don't FEEL anything. If it were not for the promises made to S. and C. A. and a few others, I would not come back. But that is then, my fourth seizure, or when I can only drool and lose consciousness.
Now I look at my books and I don’t care anymore if they are sold, in fact, I don’t even really see them or anything as mine anymore. But still, I sit here, with every breath a struggle and my heart stopping and starting, and erratic close to a majority of the beats, and I go on. I have no future. I will take no vacation. I will have no family dinner. I will never have a job. I won’t take an education course. I don’t have the capacity anymore to write that book. What I know waking, and sleeping, and being listened to on the monitor so when I wake, I can be helped up, when I can’t even talk or use my arms.
And still I go on. Why?
I guess because right now, I feel that on some days, I feel I can make a difference. Many days, sometimes many days in a row, it seems that I can’t. It seems that nothing I do, the cards, or gifts, or little letters or the pictures for the posts or the posts on the blog make a difference. And then, I get frustrated and sad, and truthfully, I look forward now to the time when I am free. When my body will rest here, but I will be gone. I hope it is as peaceful as it sounds.
I am losing function so quickly now that it is hard to keep up. I am something like a mix of Flowers for Algernon and Johnny Got his Gun. I am a collection of what people read as horror films or stories. Take Stephen King: the book Thinner is about a person cursed to become thinner until they die. Yeah, that’s life, scary I guess but life. What about Misery? About a person who can’t use their thumbs, whose feet are smashed and they have to use a wheelchair, how they are chained inside. Yeah, my life and that are not very different are they? A “healthy man reduced to that by a maniac, what sickening horror.” So who was the maniac who did this to me? No one. But people find it terrifying all the same. I hope you don’t pull away because of your own fears, or your own sadness that I am, not in a theoretical way, but in a very quick and very literal way dying. In fact, I have already died a few times and come back. Because right now, you are the ones who are keeping me here.
You may not like it but I consider my desire which helps me continue, perhaps part obligation, perhaps part vanity but I want to live because you want me to live. And if means I am in constant pain, and with constant care, and unable to talk; or to lie in bed 50% of my time and 25% of the time be in so much agony I can’t function to the point of holding a toothbrush but I use the other 25% to communicate with you, in postcards, in emails, in blog posts, then that is enough. I live. Maybe I will find some other motivation. But for now, on the bad days, in those bad minutes and hours, it is you.
I am tentatively scheduled to go to Seattle in January. That is a long time away. People will leave to be with the ones they love. I will have to fight alone. I don’t know how to do it in this body.
Some people, many people, some readers think I will go to hell because I love Linda. I think that is supposed to scare me or something. If there is a hell and I am sent there, then I will be free at last, and I will find a way to protect those there. Lesbians in hell, my ass. I spend a great deal of time and was very fortunate to finally find this picture (which I had seen another person own). This is me. I have walked in the fire. Christians aren’t very good on their mythology, because there is something else about the Sacrifice, which is the Eternal Warrior. Hell doesn’t scare me. Pain and the looks on Linda and Cheryl’s face scare me. Feeling nothing, not even the desire to fight scares me. Being free again with a sword does not scare me. The people who think when I die I am not going to come back for them, should be scared of me.
Here is another picture I picked up, of the Valkyries (which was actually the name of my competition sword, Val). Swooping in the sky, weapon in hand. Not the worse life. Right now I live the life of Loki, chained, who has the acid dripping constantly on him, with his wife catching as much as she can in a cup, but when she empties the cup, it drips on him and his screams and writhing shake the world in earthquakes.
So that’s how things are. And if you know how to get from here to January, please help me. In fact, that’s what I want to say, help me. I think, even with a memory of just a day, even with this weak body, even with the pain, that this life is pretty good. I think there are good people out there. And I think I can remind a few people, maybe more than a few that change, and taking risks and caring are possible. They aren’t pain free, and sometimes you will be hurt, but they ARE possible.
When I go, I want to go fighting. I want my body to be so ravaged that they use it for the next 100 years as an example of what is possible. I never got to do the Ironman/Ironwoman Triathlon in Hawaii. This is my Ironman/Ironwoman. I knew a woman who did it three times, and she used to run mountains for just the running section as training. I like that image, not climbing, but RUNNING up mountains. Don’t let me just open my hand and let go.
Even as I type that I know soon I will not be able to type, and I can now use my hands because I have two heart meds and most of my pain meds in me. The pain, the exhaustion of the body system is beyond imagination. Think of a marathoner. Then think of them asked (forced!) to do ANOTHER marathon after the first one, without stopping. And see them staggering to the finish. Now, THAT person is responsible for every beat of my heart; if they lose consciousness, I lose consciousness, if they weave for a second or two, my heart stops for a second or two, if they don’t have perfect pressure every time, I can’t breathe.
That is where I am. It isn’t who I am. Who am I is going to be dead, soon. And I would like to know how to delay that, and I would like to fight. I just don’t know how.
I did ask Linda to find me a 10K in december....just in case.
1 day ago