How fitting it was that the Hoh Rainforest, someplace that seems very otherworldly, was the end of my dreams. It was the fulfilling of my last dream. I now have no plans, or hopes for the future, all burned away, and so this, for now is the end. But a very ‘other’ place to enjoy an end.
In fact, much of the green, the moss and mold reminds me of Oga’s oil artwork which serves as backgrounds in Ghibli films such at Totoro. Here is a scene that seem very much in Totoro’s world.
I guess the question that everyone would like to know, the one that is frustrating and dominating things is, “When is Elizabeth going to die?” I would like to know it, the hospital would like to know it and so would Linda. A lot of people would. Even though Linda HOPED that I would make it to October, but beyond that, there really isn’t anything, a blank. Here is Linda in the ‘other world’. Something we shared together.
The problem is that for single person with one paying job, having someone who is needing greater and greater medical intervention is a very serious business: it has emotional but also financial repercussions. And the truth is, even with me selling a few items on ebay (I don’t have a STORE, I sell a few things when I have the strength to put them on), we are financially tapped out (if having your credit card maxed is tapped out: sort of post tapped out). And I still have a $17,000 chair we are supposed to find 20% of, once Blue Cross approves it, much less how we are going to afford our portion of the $5,000 portable oxygen concentrator, or then, the ventilator as that becomes necessary. We just paid our bit for the $500+ regulator of our concentrated oxygen tubes we carry with us – three small bottles and a giant bottle on Linda’s back carried on the ferry just to go over so I could travel to the Hoh and back.
So when WILL I die? Because while I am brain damaged (I will try to write in detail about this later in the week) and often not able to understand in entirety, and need to be protected from information or myself at times (or in some ways, all the time), I still am alive and somewhat mobile. Yes, my heart is erratic for several hours a day and at some point when it gets to a determined level of erratics we will get a pacemaker. Then maybe a ventilator and port so I can breathe. Then there is the tube to maintain body weight at a non-self cannibalism level. And there are things like diaphragm pacemakers. Nothing really to help the brain, and the increasing problems there, at least these last few weeks with language loss, comprehension and periods of diminished capacity. It isn’t easy for me writing about these things, but I do. My urinary and fecal retention has reached the daily point where some sort of catheter is probably in a near future (and maybe golightly - ug! Good thing I can't taste!).
But these measures all cost, and these are just to keep me alive longer, or the body alive: no improvement of quality of life, that is going down. There is nothing that can be done for degeneration of the brain, of the autonomic system and of the level of oxygen in the blood.
People talk about getting back to me at Xmas and Linda and I wince because being alive or in a state to do much more than lie there has never been concievable for either of us. It is like the person saying, "See you when you are dead!"
I deteriorate every week. Now, maybe the deterioration isn’t quite so obvious though a blog nor does it seem as quick (though in some ways it is lightning fast, with something removed forever in just one day), but it continues. And I guess the question is how far down will I go?
In the forest decay can produce beauty, as these fungi on the ends of a downed log demonstrate. They are breathtaking. But in our society, in humans, death and beauty doesn’t seem to happen. The dying are supposed to give speeches like “The Last Lecture” while looking fairly healthy and then go to hide behind the veil and do the actual dying there (to me, "The Last Lecture" with a visable bulging tumor, slapping on patches of painkillers between sentences and a few stumbles or a scream or two with heavy breathing over the podium would be a bit more my speed, my level of...reality).
I don’t have cancer, I don’t HAVE a mapped progression; am I on oxygen for hours, sure; are my fingers purple, sure; do I get brain damage on a weekly level, certainly. Do I have nose bleeds from spiking diastolic and systolic BP, yup, several times a week. Am I losing weight daily? Am I losing the ability to see, not exactly as we understand it, not a traditional blindness but often a dysfunction of the neurological input to make people blobs or behind a curtain of red dots? Yes, almost daily. Loss of speech, daily. Loss of motor function: daily. Are some days where I have equitable function to someone with later stage ALS: yes. Are some days when I have hours where I have equitable function of someone with only 10-15 years of MS: Yes. There is no mapped progression.
Could I die in a sudden loss of heart function over a period of 30 to 40 minutes combined with seizures? Very, very possible, in fact, almost happened a few times in the last weeks. Could I have a massive stroke and end up with brain loss and a body sustained by machines: again, how do you think all those bruises are going to be carried away in a compromised vascular system? Will all my futures mean I will be able to blog less? Yes.
Linda and I have already talked about the days when I cannot blog, when she will maybe report some of our conversations. These will be the times when I cannot speak or use my limbs consistently for enough minutes or an hour or two in a 24 or 36 hour period to write or use DragonSpeak and make a blog post. I have had some very near misses, as you see over time, I have more and more “system down” posts, but I want, and fight, against the time when I simply cannot post for two or three or more days: because then that first "Linda reporting" post will be the start of it, not the single exception. But when will I die?
“See you next spring” – for me, I gave gifts in summer and contributed a hefty shovel full to our financial downfall because there was no Xmas for me. There was not going to be the ability to give or even understand who people were at Xmas. There was no saving for tomorrow because there was no next year, no vacation in 2009.
But now, with the gifts and the packages, my mental deterioration is far worse than I expected. I often fear opening packages or moving the gifts people give from packages because 1) I cannot remember WHO the person is in a few days unless I am emailing them immediately (not often possible) and 2) I will never be able to match the present and package or person back up, the photographic memory is now the reality of mid to late Parkinson’s or Alzheimer’s. Cheryl and Linda protect me, shield me, comfort me because I am frustrated and confused holding a gift I don’t know who it is from or when it is from.
I love getting cards and gifts. But often, if feeling unwell, and unable to email right away, I know that I will not email at all, because I won’t KNOW anything about the item except “cool” and “I didn’t buy that, so it must be a gift!” I have forgotten gifts Cheryl has given me for my birthday, had to ask her where I got it (and it is so common, I have lost my mortification when it happens: "This is nice, where did I get this?" Cheryl: "I gave it to you three weeks ago." Me: "Wow, cool, great taste!"). A host of forgotten gifts Linda and others give me for important dates. This is my life. But I am not dead. I am still writing, and this is what life is, at least for me.
So, I have no dreams to look forward to, no plans, nothing except an idea I came up with today where I could sell my skin on Ebay (except the face), that the winner could come and cut off my skin for transplants in order for me to raise some money. Because maybe there is some treatment that could halt this disease (these DISEASES!) I have for a time, maybe IVIG could get approved if we get to the States with our $1,000 (that we don’t have) to see a Neurologist. Maybe if there was a halting in progression I would heal and my mind would improve. Maybe if I had a pain specialist and wasn’t in constant pain my mind would improve, my life would improve. Those are maybe’s.
Dying isn’t much of a maybe except for when. Will I see cherry blossoms again? What will next summer bring if I had three air conditioners and I STILL ended up in hospital and in emergent conditions over a dozen times? Will I live on, fighting with my exercise and my three or so good hours a week only to die in a spring heatwave? I don’t know. How can Linda start saving money, start planning for HER future with me here, draining her psychically, emotionally, financially. And we still have to get Blue Cross funding and the 20% for what my biggest supporter calls, “your last wheelchair.” And it is.
I should be thankful for what I have, and live in uncertainty. I did that for over a year and yet now, without a date, we can’t get hospice help, we can’t get specialist painkillers, I can’t for instance set the time of my death while I still have the capacity to do so. Yes, I believe in death with dignity at the moment of choice. And for most people with most diseases, I am FAR, far, further down that road than they and I am still not popping pills to die so don’t worry I am not about to pop off any time soon (excepting the suicidal impulses from being such a drain on everyone I know who loves me: both of them). But when it becomes obvious: like, they have to restart my breathing and suction out my lungs a couple time a day and restart my heart and I am in agony and there are no painkillers left that work and I only have the use of one arm a little, then yeah, I am not going to make anyone an accomplice. But right now, no one knows whether I go in a bang, or I whimper on for months (a year? Is that even conceivable, a year, another summer?).
I don’t HAVE an answer, it is a question that follows us to every GP appointment (why else leave progressive anemia for months, unless you just don’t know what to do?), to most if not all specialists appointments and lives with us in our home. I am NOT GOING to San Fran: I have no money, I have no oxygen concentrator approved and owned as yet so I can breath if I HAD money. Plus thanks to Linda’s employers, her vacation has been stolen away for every MINUTE of when she comes to the ER to make medical decisions as my legal medical power of attorney (because usually at that point I have NO CAPACITY TO UNDERSTAND or make those decisions).
So what dream do I have. Nothing.
What gets me out of bed in the morning? Pain. Pain so bad I can’t stay in bed. Heart so bad I fall on the floor and lie there for hours. I am now at least once a week found stuck, too weak to move, until Linda comes home (and her bosses are right behind her at working pestering for her to pile on the overtime! Which she doesn't get paid for: "There isn't enough 'buzz' about you Linda!"). Soon, I might be unable mentally to leave the apartment by myself, but until then I will continue to leave, on my own power, by myself, at least four times a week. To sustain a life I am unsure what to do with.
There are no easy answer and yet, as much as we question whether life should come INTO the world before and during pregnancy, this is an important question too. And the uncertainty of when I will die is jamming the grieving process: I die tomorrow, Linda is not ready. But if I linger until a blind vegetative state and then what: she has to leave me in some facility to visit on weekends, to talk to and hope that I hear her? That is going to be a messy grieving.
Beauty is in decay, at least in forests, another world Heritage Site, after the seven I saw in Japan. I don’t know what to live for, or why, and surely that will not help in my vigilance in doing all I need to stay in optimal health (or what that passes for in me). I don’t know what my future is beyond death (or what it is between now and death), I don’t know when, I can not work (I have paid rent since aged 12), I have little resources, I have diminishing functions and it should be useful to everyone to know....when will Elizabeth die?
3 hours ago