“What if today was your LAST day” a car commercial asks, while some food establishment advocates us to live as if it is the last day. When we are bored we ask each other, “What would you do if this was your last day.” I think they probably should ask, “If this was your last day, what would you be able to do?”
Sometimes people want to know if we see evidence that the end is near. Well, without a howling banshee outside, I am not sure how much more signs are needed. People see me at my best, and like the person who, in only seeing the neighbor with cancer every few weeks when she smiled, concluded that her cancer was ‘pleasant’, even though she died from it, will ask, “Do you see the evidence now of Beth’s dying?”
It isn’t that we have started seeing evidence, it is only that we are seeing far less of anything else.
The trick with keeping a body going beyond autonomic function expiration date is to be surrounded by people who can see the signs. Having someone who wakes up when you stop breathing is important. So several times a day to many times a week, they catch after checking, and rechecking a body which is overheating for no reason, a heart slowing to a stop, or too erratic, lungs crushed, unable to swallow, unable to breathe, diaphragm to weak and choking in sleep, or a dozen other things. A couple days Linda asked how I was, and I said okay, just the fingers turning black, and showed her the hand’s palm, with the tops black and the fingers dusky, then laughed. What else is there to do, stick it in a fire (I’ve tried that).
I have always lived by ‘surviving’: if there was a fiscal problem, then I worked an extra job; I just pushed through, no sleep or little, working 14 or 16 hours a day for years was completely normal. Perhaps my ‘normal’ isn’t other people’s ‘normal’ but I know that a lot of people have to take second jobs, and to me it just made sense.
Then I got ill, but there was a routine, I might need to sleep more but so much of my body worked that I continued to push through when I needed to, so often on weekends, when Cheryl was here, there would be less sleep, sometimes only 2 or 3 hours in the determination to go out and see things, wrap packages, send out gifts and send postcards. And the same occurred during the week.
But in the same way people talk about ‘old age’ catching up to them, a terminal disease has a cycle, and if you have a rapid and or degenerative disease, that cycle changes rapidly. If you have a disease that is degenerative, and life shortening, you still have this cycle, it is just a lot easier to play the denial card, pretty much all the way to the end. But since they said when I was 28 that my heart would literally explode in my chest by 40, I wasn’t looking for the long life. But there is quite a difference between a heart wall thinning and progressive organ failure.
I follow my body not because it ‘knows best’ but because it is the only chance I have of living. And I want to live. I want to see Linda tomorrow. I to see, meet and otherwise know new things, new people, and life in general.
But my body and thus my life is off balance. My body is always at the ‘teeter point’, that ‘oh shit’ when you are about to fall into the river or down a ravine, or you can feel your bike skid sideways on the gravel. It is rare for me to have enough energy to have ALL of my body functions (like organs) work at the same time, and I never will anymore. So when I eat, I get slow and stupid, because I can either digest my food or send blood to the brain. It just is. After I exercise, I often don’t breath once I fully relax, then I will have massive heart problems, or lung problems. I need the exercise, because only in keeping the vascular system working, including sending blood all the way to the skin, do I avoid infections, gangrene, and the other joys that those with advanced diabetes already know, until eventually the nerves, skin, muscle would die simply due to being too far out. I need the exercise, but to do it, there is a cost, which is unknown until I suffer through it. How much is too much exercise? There simply is no way to know until later, and no way to tell what is ‘too much’ the next week.
My exercise makes people nervous. It makes workers nervous. I try to explain that when I pass out for longer than 30 seconds they are there to alert staff or call 911. And that personally I find doing it myself with NO ONE a worse safety net, but I will. And yes, I do pass out, because I usually do the first 120 sit-ups and push-ups in sets of 30 alternating and going as fast as possible (with boxing jabs while doing sit-ups). And yes, I do pass out, for a few seconds often. But to just get the sweat started I need that extreme heart beat and pressure.
Lots of people say, ‘You got a good work out, I saw you sweating.’ I go until the sweat is pouring off of me, no matter how hard, because ‘is that enough sweat’ is something I am betting my LIFE on. When the last specialist said it is the exercise keeping me alive, then I don’t take chances on whether a little sweat is enough.
So, when I ‘Follow the Body’ does that sometimes mean pain or unexplained and overwhelming pain? Yes. And we treat it like the time the ER doctor gave morphine so I could talk. Am I sorry that I am in pain? Yes. Am I sorry that I write about it, or people’s reactions to it? No.
We are so used to being in ‘control’ that when we don’t have it, don’t even have the choice of it, and find that frustrating and leaving us with a bad taste and helpless: Ah, now you are starting to understand illnesses, like cancer; like mine. In war, people were in pain, and even if they lived for months, they could be in rather horrific pain with rather horrific looks or oozing sores, or other effects. And we condemn the historians for smoothing over WWI or Crimean War, making it grand instead of showing what it was ‘really like’. Yet today we glorify the better parts of illnesses from M.E./fibro/MS/Lupus and show the plucky person in remission, or anything BUT what is. Much like in the military hospitals, spruced up and eliminated of maggots in gangrene before the film crew arrived.
I went for my 2 or 3 hour nap today and woke up 5.5 hours later (I had stopped breathing in my sleep as well, and needed to be ‘bagged’ and breathing done for me), and then elevated for the dysfunctioning diaphragm to work. This wasn’t my plan, or how my day was to be. But the body decides and I follow. I have nausea, for hours, and no remedies from Mayo’s fixes it this time. Things that go wrong just go wrong, and I overheat or go into seizures or wake after 1 hour instead of 8 with half of my body and face dropsy for no reason whatsoever. I take all the medications. It is simply what dying is about. And for me, I would rather be up, as and when I can, while I can. But those times when I can’t, neither I nor any others with diseases which require a consciousness to follow the erratic whims of a body, have disappeared, or want to be doing any less.
If you know someone who follows the body, or who had disappeared from work for ‘health reasons’ or cancer, then I recommend writing a letter, or sending some version of ‘hello’. Because when you have to follow the body, it is not so much that I or someone else ‘disappears’ but that everyone else does, like a world out of time and out of place. I am constant, living with the same disease I had two, three and four years ago, but like someone whose pace slows due to an impairment, that doesn’t mean all, or even many, will slow with me.
When I was 16, I wrote a short short story, published, about three friends of differing impairments, and abilities but how they slowed for each other so that, together, watching, no one noticed anything but three friends laughing. I had dozens of people including my own teachers coming up to ask me, "What does the story MEAN?"
18 hours ago