Dear friends and readers,
There is no way to make this easy so here it is, I’m dying, and probably fairly soon. I am going to try to use a series of letters about the emotional experience around dying and my thinking about that to share where I am and what I am feeling.
First off, what does “soon” mean? By my calculations I am in the Penultimate Stage; the ultimate stage would be where only machines are constantly maintaining my life and the removal of them would end my life. It isn’t just me but Linda who has been feeling it too, particularly with this new progression of my inability to convert oxygen, even when ON oxygen. As she said, this was the first time I hadn’t come up with some “trick” or way to make things go back to ‘normal’ (no matter how much rest or exercise) and that is when she realized, that my life is coming to an end. Now that could be a couple hundred days away, or maybe if we get the right equipment in time, even longer, or of course, much shorter. The sad reality is because of the medical system in Canada and the exceptionally long delays in certain types of diagnostics and treatments I will almost certainly die sooner than if I had the proper equipment at the proper time. Even now, perhaps IVIG could do some good, make some stabilization but it is a treatment that even if approved would take months to get enough specialists to APPROVE that it was approved. Laugh, everyone, laugh.
It has taken me a couple days to work up to writing this post. I guess in the same way I never sent out the letter to all the people I had fenced with saying that I would never fence again and to thank them for their support and the enjoyment we shared. I wanted to believe that something would be found, someone would care, that it would look like one of those medical shows where doctors seem to give a damn and go around yelling orders and being impatient for results because they actually want to do something. And even after the neurologist told me that the nerves in my limbs were destroyed, permanently destroyed, that I would not effectively walk unassisted again, even if they figured out the heart and BP problems when I am upright, I didn’t send out the letter. I was scared that I was the only one left who cared about that. I am not a fencer anymore. Period. Full stop.
There are physical aspects and psychological aspects to dying. One example, right now is that I don’t buy things for myself, and haven’t for several weeks, just postcards, stickers and gifts. I have accepted that anything I buy, unless it provides months of constant use or joy, will just be another item that Linda will have to deal with once I am gone, and there are going to be plenty of those.
I am tired, fatigued on a daily basis that isn’t seen by outsiders or even visitors. I am also in contant and continuous pain. What used to take me two or four hours after Japan takes me all day and all night now. In fact, approving comments, responding and writing the blog takes about 10 hours a day. But I’ll get back to that. There are the increasing number of seizures and TIA’s (5-10 a week). There is always the threat of another stroke. My heart is failing at a slow but steady rate but the circulatory system and oxygen have sped up in terms of failure. I asked a nurse on the lung unit who saw that I was on oxygen and my fingers were purple, my lips blue, what exactly was the progression, what intervention could they do? As the circulation continues to withdraw and the blood fails to convert or circulate, the oxygen is pulled back further and further, until I am on oxygen 24/7, like at Port Angeles, but I would go into the hospital. At least until a 24/7 unit could be set up at home. What then? I asked. The blue will advance or the black until it goes to the shoulders. And the solution? The only thing they can do is increase the flow; give me a face mask. And after that? There is no after that.
Oh yes, I could go to the USA now and spend a couple thousand dollars of Linda’s money to get a diagnosis. Know of any disease that hits athletic women who never smoked and have healthy hearts but can’t get enough oxygen even when on oxygen? Know a disease that destroys the entire peripheral neuropathy while the person is still alive? That takes away the need to eat, to drink, to take a breath? That makes EACH CHAMBER of the heart individually erratic and the blood pressure fluctuate in minutes from 195/176 to 105/50? That takes away eyesight, and makes your organs slowly die inside you? I am not leaving Linda further in debt because I cannot accept what a neurologist screamed at me, There is no treatment.
Of course, I could stroke out instead, have a massive stroke from a blood vessel breaking down and splitting or bleeding in my brain they way they already do in my feet and the hollows of my elbows. The last few days, I have woken to painful spasm in my leg muscles below the knee. Maybe they are just deprived of oxygen and maybe now the muscles are dying too. I don’t know.
I know I have an auto-immune disease, I know that my limbs and perhaps every nerve in my body is dying or already permanantly destroyed: the axons destroyed. I had an MRI a day or so ago which will either prove my neurologist was right that “nothing is wrong with me and the MRI machine is wrong” and my T1-T-4 is not losing nerve function or that I am. But as I was put in the chamber I was told the MRI would to take 20-25 minutes and I was in there 75 minutes while the head radiologist was called, and they repeated sections and did my C section as well (not asked for). Very um, thorough if they found nothing. Not that would stop the autonomic failure of my central nervous system. If my night system ever fails as my day system does, I will simply stop breathing. I won't wake up. I will be dead.
I have both oxygen bottles AND an ambi-bag (the one EMT’s use on people who aren’t breathing) around me for use by care givers.
So that is the physical aspects, besides that my hospital bed ordered November 2007 and approved some time ago by blue cross is being installed this week, and I will have a special table to keep doing computer work as able. I will spending more and more time in bed. I say that because right now it is only the pain of a poor bed that forces me to transfer to the better computer desk chair. That too is being replaced with an electric chair which will include seat belt and neck support. Linda is ordering a portable oxygen concentrator. I need these things, Linda and my caregivers will be happy to see them.
Psychologically I can’t say I am in the “acceptance” stage, but I am also not an idiot. I have a box of the mail I have received from people organized chronologically. Because I do not understand time, it helps me if and when I have extra hours to make sure people get a thank you in the order they arrived. Also, I need to look up their name on the computer if they are now in the “blank space”; and please don’t take it personally, Cheryl has often ended in the blank space or ended up with another name altogether.
I have just come to realize and accept, with frustration, that I likely do not have the time to write those thank you notes. I don’t have the time or strength to get the Ebay auctions together for anime. I have books I have saved my life to read and now, even if I turned off my computer I would not have time to read them all. And the ones I read, I would have no one to talk to about them, no time to write a paper, and if I did, I wouldn’t be here to see it printed.
Before I was playing at dying, sure it was dangerous but I always had another trick and I knew the day would come when the tricks ran out but that wouldn’t be today so lets just go on……except, well it IS today. And what will it feel like in 100 days when summer is over, and I will not have the strength to go places but rather be ‘taken’ places. And that is a major distinction.
I went to the library and I got a few books. Reading is harder and harder for me. But while there I felt the need to write. There is such a lack of books on disability in the Teen Section, a lack of books for female athletes. I want to write. It was the first time I WANTED something in a long while. I am stopping my job hunting after many applications and over a year of trying. First, Canada is not ready to accommodate a disability, and second, people make the type of judgements about a person in a chair the way US Southerners in 1890’s made judgements if a person’s skin was black. Yes, I still want the human contact and satisfaction of a job, but I am admitting that I no longer have the energy to do job hunting as a hobby, nor the capacity to keep that job if I got it. My protest is over.
In the last three weeks, I have been too weak, tired and occupied with one or two appointments a week and keeping the blog going to have the energy to do postcards. I have to wait for assistance for that. The spirit is willing, but the flesh is weak.
So I am asking the people who read here. I will be honest, the comments, the knowledge that people read here is what enables me many mornings to get up, and get through dressing and getting to the computer. I am in pain constantly, I am alone, I am tired. Without the blog, none of that would change; but I would not chuckle at comments or have the freedom to express my frustration or joy and have a response in hours. I would not have this community.
I do not want to give that up. And I know that if I blog less that many people, as many already have, will drift away. The blog isn’t sex reviews and sarcasm all the time, or me off doing zany things. This is the part when it is going to be pain and then even more pain before laughter, at least for some weeks; more losses, probably each week, each month. And one day Linda will post I am in the hospital, and then some time later there will be a post that I am dead. There won’t be any more postcards after that. Screw Bronze will be over. And I am scared.
So I want to know what to do. I would like to post a little less on some days, maybe just short posts. And I would like to take one of the days on the weekend off, just for now. I know that a lot of people come here every day and I know that once I am gone, they will drift off to another blog. I’m a realist. But I want to know from the readers what they want; is three big posts and a couple smaller ones a week enough? I would like a couple days to try and write a book, and I’m not just writing that like so many do: "I want to write a book"; this is my last go. I know I won’t see this book in print, I just need to write it. Sometimes the joy of writing something that should be written is worth more than seeing it credited as an accomplishment. I have learned so much in the last 18 months and I don't want that to end with me. I need to start soon. I guess I am asking for collaborators here, for you to help me so that I can this done. And I will post how it is progressing. God, I hope it progresses.
I guess that what makes death and dying real to me, is that I realize that this is IT; this is all that I will do, all I will accomplish, that whether I like it or not; this is the culmination of the life of Elizabeth McClung. I can have a wish list as long as my arm but I might, if I keep using my tricks, get one or two more things done. But the meaning of them has to be more than what anyone will think about it, any review or applause. This isn’t about a legacy, because I don’t have one. I learned a lot and hoped to pass that on. It didn’t happen. I started this blog and now this is what I do. I want more than your permission, but support to do more. While I can. And that you won’t leave me. If it looks like I am publicly begging, I am. I have nothing to lose in begging, I have everything to lose if people drift off, if I die alone, a blank computer screen my contact to the world.
And yes, won’t it be great if we joke about this post a year from now. I will be the first to point out how drama queen it is. But if you know of a way to breath and keep your brain going without oxygen, now would be a good time to tell me. If you know a way to stop the fatigue, the pain, the whole horrid ride, then tell me, tell me.
I will not see all the TV series on DVD I own, I will not write all the postcards I want. I don’t know how much time I have but once I start the “final” stage, I expect it will be very quick, so while we are ON the edge of the cliff, lets dance while we still can? That’s where things are physically and emotionally for me, so I need to hear from you, what do you want to keep coming back every day? Because soon I won’t be able to post at the level I am now even if I spend all day doing it. I want to write, there is another book in me, and I want to write it. Do you want that? How do you want it? All I can say is that once I have the book done and edited a few times, I will send it by email to those who are interested (Oh golly, I might miss out on some Royalties when it sells, ha ha ha – laugh, people, laugh.).
3 hours ago