Cat visit plus my body loses function. Linda and I face the unspeakable D. word in our own ways.

Tuesday or Wednesday I had my visit from the cat group. They have gone into children’s hospitals, and they go to nursing homes, I am their first personal visit for I guess people who can’t get out much. The cats have all the shots and a ‘passport’ (I assume that is for health?), and then have to pass a series of personality and how they interact in groups and loud noises. The cat which came with her owner was some long name but we just called her Hooch.

Hooch was very interested in exploring (and shedding, NOW our place feels like we have a cat!), it really did like to see everything. I liked the cat just being around, I didn’t need to have it bond with me. Because it didn’t. It would rub up against Linda or the owner’s legs but whenever I picked it up it never even looked at me. It never even checked out my socks or my legs which the owner said it ALWAYS does. The owner was somewhat mortified and wanted to bring another cat next time. I told her I liked Hooch, I could tell what she was thinking very quickly. But she could SEE me far away but not close up. It was very strange. Linda was telling her about how animals and kids like me. I think Linda was a bit embarrassed too that she had set this up and this cat didn’t want me, one point it hissed. I was fine with it, as I know that the first rule of cats is, they don’t do what you want them to, they want to do what they want to do. I moved the wheelchair to see if Hooch was frightened by the wheelchair and then I dangled my hand, and it would see it and come, but then as it got close it would walk right by.

Finally, I figured out what the problem was: I have no scent. I do not sweat, not in my hands, not in my fingers: nowhere. So what I eat doesn’t come out in my sweat, I have no scent whatsoever. I am like a tree. Poor Hooch could FEEL the fingers but it was like being picked up by a ghost. It didn’t rub against my legs because it couldn’t tell the difference between them and the furniture, they had no scent. So I went and got some of my older wheeling gloves, the ones I would wear for badminton and I had her sniff those and suddenly it was like she should see me. She came to me, she let me scratch behind her ears because she had a scent. I told the owner next time I would wear the gloves the whole time. Hooch, now that I was around, didn’t want to go, also wanted to see more stuff. So the front body carrier she was pushed into, she kept figuring out ways to stick her head out. And the owner kept stuffing the head back down. I know, cats doing something unpredicable...who would have imagined? I felt bad for Hooch – find a place that has lots of little spaces to explore and you get your head stuffed down. Linda on the other hand thought it was like watching pop-goes the weasel. Linda doesn’t identify with the cat, that’s just her way, growing up on the farm. For me, I like to know what makes each individual animal scared or happy and try to have a positive interaction.

The pictures above are NOT good pictures of me, or rather they ARE, they are pictures of how I used to look before I got a lot sicker than I was then, a lot thinner. After two nights of no sleep and a bowel evacuation which INCLUDED food eaten but not yet processed I was, and am now looking at coming off a week where I was lucky to have a meal a day, missed two days entirely and now have not processed any food since Sunday. It is not pleasant having the cramps but less pleasant watching bite size portions of meals you just ate hours ago, or half a day go coming out of you. And having a fever while you watch, and moan. You don’t need to have someone tell you that something is very wrong.

I thought, the next day, after the fever finally broke that it was okay, but last night, with a night nurse here, it started again and I lost all food I had eaten that day. I was eating and yet starving to death while working hours on the toilet and though I look thin with cheekbones and collarbones in the pictures, it is nothing like now. I had a high fever, my autonomic system unable to regulate many systems at a time. I slept, and slept. And drank gatorade to get some electrolites in me. The first few days I had been dizzy all the time and that came and went sometimes when the fever was bad. But it wasn’t an ear infection, just a loss of ability of my body to send blood to all the portions of me. This day it was smoothies and soap, anything to keep nutrients down and better yet, have them maybe stay long enough to give me strength. The night nurse told Linda she was shocked at how weak and thin I was in just three days (when she last saw me).

Too late for a hospice, I was fearing, and each day another blaster of a hot cloudless sky. The heat made my arm expand SO FAST it burned the metal clasp of the watch into my arm, just like a brand. And I keep it loose for when the heat makes it expand. I was scared, because it seemed like the wheels were stopping, and things were shutting down and I wasn’t ready for that. I wanted to go back to living on the border; I mean, yeah, I stopped breathing for two hours on the weekend, which is never really a good sign, when people have to breath for you, or devices have to, or when you can’t become conscious. Linda was so angry at me, when I finally could sit up. And I told myself never again, never would I make her watch me lying on the floor for over two hours, cold, pasty. Except now...

We each have, in our own ways, been saying our good-byes. I thank Linda, she thanks me, she touches me/she doesn’t, she cleans for no reason. She is scared, she had thought we had a year, a year is a lot of days only now I get worse each day, dramatically worse. I am scared; once I go to hospital, I believe I will not leave, my body will not rejuvenate itself anymore, if it does not do it tonight how many days do I have?

My urine has no color, it is transparent, this is a sign of kidney failure. Linda checks my eyes for rings, though I still have a fever, and am rather loopy; yellow rings will tell if there is toxin build up, then the jaundice. We watch the pee, debating if this one has a slight tinge of yellow.

Autonomic Failure attacks the basis of all medication. Medication is based on the idea that through an accident or experimentation, if you give the body X, the brain will tell the heart or some other part to do Y. Except that is the part which is liquefying, and a jumble. I take a dose they give ‘grandmothers’ for beta blockers and it makes me comatose. I am supposed to take 1, then 2, then 3 of stool softeners. It will do nothing to my bowels, I am told. Cheryl gives me .25 of ONE pill and three days later the cramps after 12 hours of taking dumps are still going, even with nothing left to go. I go into the hospital and they will find many, many things wrong and unless they have a doctor on hand who understands exactly what that means, any medication they give me in a normal dose is as likely to kill me, or cause a cascade reaction as help. A blood transfusion would, as it is not anything which requires the brain to intervene.

We hope the second night was due to an inflamed intestine and raw vegetables from a salad irritating it. We hope. I hope. This is nothing about fighting against the dying of the light. This is biological, exhausting, passing out, in one case I shat myself, literally (a horrid experience) and knowing each day that knocks me down farther will take 2-3 more to get back up. We have been using up a lot of Florastor in hopes it can help me absorb SOMETHING. If you want to help, it is toward the bottom of the wish list page.

I had wanted to go to a different farmers market this Saturday and take pictures for you all. I will be in bed. We are going up away, while they do construction and demolition here, and it was to be a time of together. Right now I am still going in an out of fever. Will I still have it when we go up island? I just want to go back to having no energy and fighting with it all, fighting with trying to get help. I want to go back to being able to push back my nap an hour and get a lecture. That’s is now the good life. I dreamed I was sword fencing. It was a dream; that is not the good life for me anymore. ANY life where I can be with my online friends, where I can have enough energy to write them, and to read what they write me. ANY life that has Linda in it and Cheryl (even if that is me hiding, too tired to fight). That is the good life. Please, please let me not crash tonight but sleep in a bed for the first time since Sunday/Monday.

This is what good-bye and being terminal or having these episodes is about – it is just hundreds and hundreds of minutes of wondering and fear. Hundreds and hundreds of minutes of trying to do what you can and hoping that is the right thing.

I want to be here, where I am. And this week, if I can stay at home, I guess less postcards will get done. Maybe they will bring the stuff to my bed? But I had wanted to send out lots of presents. I like sending out stuff. Children like presents; they like to get them yes but they like to GIVE them too, from objects to hugs.Little notes of ‘I love you.’

That is what all those things I send mean, they mean, ‘I love you, I care about you.’

I don't have big dreams, but they are dreams. I realized there are shows I want to watch with Linda. Plans I had made for both of us and not told her. But each day, as I get worse, and weaker, they crumble; maybe not a year but a few months, then maybe just a month. Oh God, let me read the manga I ordered; watch the DVD set I got? Let me make it Luminara.

Finally, 'let me make it to the weekend, when Cheryl can be here.' So many people left to send cards and gift to. I never wrote that letter to Cheryl and Linda. Oh shoot where did I hide that present for Linda? The realization this IS a body that is breaking apart, and I don't get to determine how fast. Yeah, so now I will sleep, hoping that tomorrow takes me one inch closer to the ‘normal’ of being terminally ill. Only now do I realize how much I depended on that slow decline, that almost static state.

I do not know what lies ahead but as long as I am here, I write. I pass through each day, each benchmark, each Torii, looking ahead to know that there is another. Hoping and believing there is another. Linda talks about making sure I get my food by time X….once I get better, because spending too long looking at now hurts too much. She moved furniture today, redid the whole living room.

I guess I cover myself with plushies and hope for the best. The soup is staying down (knock wood). I wish I could wake like this, covered in a litter of exploring kittens and mother trying to get them back and keep them from crawling away and all over (good luck!). That would be my dream. It isn’t big things when your don’t know if your organs are shutting down for good, it is the small ones that matter so much.

Multiple System Failure: denying death and how to 'splat'

The good news for me is all systems seem to be within normal limits (passing out and purple hands ARE sort of normal limits) a sort of status quo, or rather a little lower than status quo. That is thing, I never get remission, I return to 90% or so of what I was only a few days before and that is as good as it going to get. That’s what we are used to now. Indeed, what should be frustrating is how I am already used to now being housebound. Where is my will? Tired I guess. Or hibernating, that’s a better image. Okay, time to sum up what has happened and is going to happen with the blog.

Why aren’t I dead? It is a good question isn’t it? I only noticed when the police gave me the “evidence” of my homicidal tendencies (the blog about Linda’s bosses and my financial and anxieties of where I will end up like in a “home”), that I went through a period early to mid November where I thought “this is it I am going to die.” Then two weeks later I wrote about stopping breathing, and how long will it be until I die. So the problem is, HOW LONG?

It isn’t quite that easy. If I had cancer, there would be 10,000 other patients who had died in front of me and they could say, “Based on that, I think you will have X months and it will follow this progression.” I don’t have cancer as far as I know. My primary disease is rare, and how it affects systems is unusual and it seems to jump around a lot. That is the whole “multiple” part of multiple system atrophy. But hopefully in Seattle, and we have/are already reserved tickets for that, the date for the MRI is being set up here in Victoria so that will go to them as well. And maybe they can tell me what the progression is. And then I will tell you.

I bring this up because I do not want to seen as a deceptive person. I am not, but with my mental condition of living in the now, because I cannot remember, it may seem that I am creating urgency repeatedly of emergency situations. I, or Linda or Cheryl or others can assure you that this is not true. Once my body becomes so weak that it appears that it cannot sustain breath or heartbeat, or that if hospitalized, I would not be stabilized, then it seems, sometimes for hours, sometimes for days, that this is IT. That I will die. One you believe for two or three days that this is the final stage, eventually I say something. Linda and I want me to die in my home,even if I don’t recognize it that day. This is why we are working to get in the palliative program and delay an unplanned hospital visit/stay (in palliative Linda or home care workers can call for a nurse, drugs and other treatment is administered in the home). Of course, in a choice of all worlds, I would still love them to find that this is a banana deficiency and everything will return to normal. Then, once cured, I will be up and about,and on THAT DAY this city WILL tremble.

But that is the myth of western world and medicine, that with enough money I don’t have to die. And that I don’t have to suffer. That death is beautiful. It is rarely beautiful. This is WHY many places have Euthanasia laws, because dying can often be a delayed and brutal process. My grandfather, who had what I consider one of the most peaceful and joyous deaths still took TEN DAYS to die. You stop breathing, then breath again, then stop, the body tires. This can go on for days.

Indeed, it is the nature of all of us to want to believe that our fears of death are unfounded. I need to be propped in front of the computer but after an hour of only moving six fingers I think, “Hey, I’m not doing too bad, right?” A few days after I stopped breathing for 20 minutes Linda said, “That was a pretty good day.”

I was slightly confused. “But I passed out about 10 times? I was to weak to wheel myself, and you needed to wheel me everywhere and transfer me.”

“But we went to Starbucks and shared an apple cider! We hadn’t done that in a while, it was spontaneous.” she retorted.

“Except you had to carry me into and out of the chair, I was on oxygen and passed out twice there!”

Linda thought, “I still think it was a good day.”

I understand what she means; she means, “Yes, there may have been 15 or 20 little ‘emergencies” but I didn’t think you might die ONCE today!” That’s why we have no plan on ‘when to call the ambulance, or should we let Beth die?” Who wants to jinx a perfectly good day? Besides, do YOU have a plan like that with your friends and loved ones? I thought not!

Linda and I are the same, so is Cheryl. Even yesterday, bent over from cramps but able to type out one or two emails on the computer said to Cheryl, “Well, this is a hellish life, but I still prefer it to no life! I mean, a few good hours a day, that’s something! Sure, I can’t seem to be 20 feet from my toilet but….I’m alive.”

The thing is that my mix of conditions makes one body system come to the front for a while, it becomes emergent and then goes into crisis. I survive that. Then while I still have many near-crisis, like having me stop breathing for say, 3 minutes or 5 minutes many times a day, that (the not breathing) becomes ‘normal.’ Linda is used to it, and as long as it is just a “few times” with the ambi-bag, nothing to worry about, and then I slowly bounce back. Well that is a lie as it is never ‘back’ but to some lower level of energy – so now instead of choosing to go to badminton twice a week, I need a very good week to go one night at all. As for my mental deterioration, which I hope doesn’t show up on the blog as much, is in and out of dementia. Even now, during a ‘good’ time, I don’t think it would be advisable for me to leave the apartment without someone knowing where I was going, and for how long, and have something there who knows me, and knows that I am coming. And that WOULD be on a good day. I have a need for friends, people who can catch me, guide me, during these final weeks (months, I hope).

As the last few days of fever, and blood have shown (blood as stool can be a byproduct of an auto-immune disease run wild, and I have two), now secondary, or incidental aspects body functions, affected by my condition are starting to collapse. And as they do, THEY dominate my life, for a while. And I imagine that this will happen in different ways, perhaps my retention will develop into a kidney infection, or my liver will do something funky, or I will aspirate more. I am still losing weight with no explanation. It is the same with my peripheral neuropathy and anemia. Every time I burn myself or feel myself for 30 seconds after a chunk of flesh is removed before the nerves die again, I think, “I’m getting better, it is coming back!” I ignore, the blood coming out of my toes, or the possible hairline fracture in one of the ankles, because “I’m getting better.” I even have a plan, I am going to be going to the hospital to the ER to have them examine the erratic of my heart and see what can be done.

That is how the day after I almost die, or technically die or am saved again, you find me hunched over, with two fingers buying stickers on ebay. Because I WANT to live, and I want to act like I am going to live. Yes, I am afraid. I can't stop that. But I want to believe, even if it requires ignoring a bit of reality. However, I have noticed that I have lost my patience for vendors or people who say, “Oh, wait until Jan. and we will restock and we can ship it then.” No, I can’t RISK waiting two months for delivery, it needs to be now, now!

I am going to sleep now, because I want to go out and feed squirrels tomorrow unless it is snowing or raining. I finally am understand what people with chronic conditions already know, that it isn’t always the big sounding things that keep you down, but a fever or, like today, tremors in my right arm, and hand, and my hands turning purple, plus passing out over and over again. Will I die? No, I hope not. But if this is my “new normal” then, I am a bit closer to that tipping point at which my body cannot be revived. Multiple system is a system that doesn’t kill you ITSELF, it lets every single system slowly die at different rates, until enough of them manage to die at the same time to kill you, or weaken you enough to put you in a coma. That is why a simple cold is the number one killer for my condition. Because it gets in the lungs and you aren’t strong enough to keep breathing AND keep the heart beating AND keep the veins dilating, etc. Death by attrition.

I am not trying to be morbid, I am finally understanding the process of this disease a bit, and I believe, with some sort of booster, maybe found in Seattle, I will be able to last a while (quite a while?). I want to last quite a while. Linda says that my readers aren’t mad at me for still being alive. “But they must be,” I say, “I gave them the thematic climax, and now we need the resolution of the story.”

So, I will go back on good days to writing about disability and lesbian fun stuff and other issues with as much humor as I can. I am interested in doing some theme days, and exploring the sexuality of the mind, which yaoi has given me a glimse into (for someone who is losing sensation in their clit, I have a renewed interest in sexual fantasies!). I appreciate everyone’s comments (not about my sexual fantasy obsession! Oh heck, talk about that, you will anyway). I will write about socks. I will write about corsets. I will have pictures of me taken again (I am too weak today for a shower, but tomorrow?), and I’ll post them. Winter will not win. I will openly and unashamedly lean on Cheryl and Linda and all of those who genuinely give parts of themselves to sustain me, from weekly mail to emails. I thankfully take this not because I deserve it, but because living is the only game in town, and anything that helps me keep in that game, is the kindest gift.

Linda has done a post, and I think it is part of some fundraising she has regarding my books. I am selling my manga on ebay and LJ for the trip to Seattle. I won’t be able to do anything except send postcards for the next month. I know from years of selling is that 5% of post is lost in December. I have limited resources and I tend to get things that are unique, so I am not going to risk YOUR gift disappearing. That’s why many people should have gotten packages this and last week (about 50). This isn’t Xmas, this is me saying that I think about you, I care about you, you are part of my life. If you didn’t get a present this week, well, maybe you got one earlier, or maybe it is still coming, I don’t know. I just am saying that I can’t risk losing a package during this month. So more postcards. More blog posts. More community.

Together. That’s a good word isn’t it? I need to remind myself on slow days, and bad days and days I can’t move that I am not alone and neither are you. Together. You are as close to people as you want to be. Just write a line, and I will try to write back. I know that feeling, that question, “do I even exist in this world?” as people go on, completely missing your misery, your terrible day, your loss, your frustration, your fears. Yes. I can’t solve everything, I wish I could. But I am here. Just as others have been here for me, from knitters, to film editors, to organists, to belly dancers, to librarians, to students and university teachers. And to the host of people who are SO much more than their disability, and yet have shown me how to survive mine, if not with grace, at least with a gigantic splat and then a voice coming from the ground, “I meant to do that you know!”

The real story: I die. I am resuscitated. How much longer?

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.’”

She did.

Say, “I need you to know you will be there until I come.”

She did.

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.