last night I woke up around three. And i could not go back to sleep somehow. Back in the days that would have been the perfect opportunity for an unmasked fridge robbery but now I usually have to refrain from sinning. So what is a motionless man to do? X. , my caretaker is in my room, there is a dim light from the corner. I hear her turning the pages of her book. She is a crime fiction reader. When she is there I feel safe. Each time she puts the full face mask on my face she whispers…. Sleep well., and I will watch over you. Love has many shapes.
My thoughts did what thoughts do, they kept wandering. All over the place, way down memory lane from my childhood and right back to the future. But then I got lost in a wormhole leading to thousands of thoughts about my death. Not helpful, you say? Not my choice, i respond. I have been contemplating death since I was a child, it fascinated me in a lot of ways, because it brings up endless and totally relevant questions if you aspire to be a complete human being.
Can I know when I die? What exactly dies? What is left of a person? What is a person? Is there a part of us that, no matter what, remains the same from the cradle to the grave? What happens after death? What does that the actual moment of dying feel like, in case you happen to be awake and aware? What is bad about death? Is it attractive to live forever? Etc. etc..
This time I ended up ruminating about the question how I will die. Of course this is as unknown to me as it would be to anyone. But i have a few advantages in the guessing game. For I have ALS. – ( hard to believe but out of nowhere the theme from JAWS appears suddenly in the back of my bedroom) because with ALS the ways to die are somewhat reduced.
What are the obvious choices? Well, it depends. First off, we need to know if there will be life prolonging measures like mechanical ventilation. Because if you don’t., then number one cause of death with ALS, top of the pops if you prefer, is respiratory failure. Which is not suffocating btw, but in most cases carbondioxide poisoning, caused by the inability to breathe out properly… With mechanical ventilation the strong likelihood of death by means of pneumonia may participate in this race with a very good chance of winning…
Well … beats death by torture if you ask me. So cheer up.
And what if I don’t want to go any longer!? Wait, wait. Didn’t you just write in your last blog post that you were going to show up no matter what to find out what this life had in store for you??? True but at the same time untrue. Because my feelings never stay the same., especially when it comes to terminal matters. On Saturday I want to fight and on Sunday I don’t. On Monday I want to die right there and then, and don’t you ask me about Tuesdays. Fact is that I am a coward. And while I would have legal option in Germany to end my therapy if I was tracheostomatized, which means that mechanical ventilation would stop and i would Die . This would happen under the supervision of a palliative doctor. But i can’t imagine that to say stop. And this scares the living daylights out of me.
Following scenario in particular. Although it is said that ALS doesn’t affect your eye muscles that is not correct. If you manage to live long enough and if you are part of the in-group your eyes will get affected and your ability to move your eyes will slowly come to a standstill. Locked in.!!!! The brain is working but all connections to the outer orbits are lost. You are all by yourself. (Recently I heard a scientist researching locked in states comparing these to states of deep meditation…. I am not so sure if it I want to find out funny first hand. Imagine he was wrong and is rather resembling purgatory. Can I in this case get my money back.?)
I really don’t know if my eyes are already affected but I do have the impression (leaning towards conviction) that they are. Why? In the beginning, when my eyegaze system i was chiseling away the texts at the speed of light. Or ALS speed of light which is turtle speed, but on the fast lane. Right now the tempo at which my eyes write is reduced to a turtle traffic jam speed. And not the ninja kind.
At the heart of my life is the need to connect. And if the means of communication slow down when will I get I at a point when I will give up? Stephen Hawking was at seven words per minute at the end. will i be able to adapt beyond that? And still be happy?
Funer als… Are there All the time…
A funeral for my legs. My arms. My tongue. My smile. My hands. The list is almost complete. But how am I to write an obituary for my eyes without my eyes?
Or will this be the time when I choose to die? ( you will be informed before that…. Promise…. Großes Indianerehrenwort!!)
Things you think about when you can’t sleep…