Recently I have reached a milestone past which I know it is impossible to go on, and I have decided to pursue Voluntary Assisted Dying and cease working toward a cure.
As you know, my quality of life has been awful for awhile, but I had a sort of "last straw recently". Pain is bad, but often simple to treat. But some of my other symptoms are trickier. One of them is hyperacusis, or sound sensitivity. The root cause is brainstem compression (bc of cci) leading to excess glutamate being released in brainstem. Anyway, I basically know the main cause of the sound sensitivity, but for a variety of reasons it's not easy to treat. I have been waiting far too long for surgery, and I used to at least be able to treat the sound sensitivity with a few different medications, even though the root cause wasn't addressed (brainstem compression). However, these palliative medications have all either had problems with tolerance, or produced side effects that are intolerable. So essentially even though I know the likely cause, I can no longer treat my sound sensitivity. Today was the moment this really sank in, and I tried to treat my sound sensitivity, and listen to some music I loved, and wasn't able to tolerate it.
The past two weeks have been a huge challenge/emergency as far as getting worse quickly and not knowing exactly why. During that time instead of resting I obsessively researched and tried to find other palliative meds in same classes of medication, as other ones and was mostly unsuccessful, I only found one, which was inaccessible and impractical , even if good on paper.
My life has really been not what I wanted it to be since I became sick, and especially since I lost the ability to play music. However, I'm ashamed to admit I sort of had a compromise position with myself , or god, or the universe. The position was that as long as I could listen to music , I'd accept every other indignity--from becoming bedridden, to not being able to play music, to not being able to read more than a paragraph at a time. Since I'm a musician that's what matters to me. I have compromised on so, so many things with regard to quality of life. But this is the last straw, and certainly a thing I cant compromise on.
So I have decided to proceed with voluntary assisted dying, with the organization Pegasos, in Switzerland (where this process is legal for non terminal but severe chronic illnesses). Its an application process that I've already started, although when I started it I still had hope for finding a better way out of this illness, and was only doing this as a plan B. Despite having started the application, since its cognitively difficult to do much of this kind of work, it's been slow going and I don't even have my expedited passport (we're somehow missing my birth certificate).
I guess I'm more than a bit scared and I'm not 100 percent sure that when I get to the clinic I will be able to turn that knob that releases the lethal dose of barbiturates into the IV, or if I will be too cowardly, but these recent developments don't seem to leave me a lot of choice.
I'm sure many people that donated to me will be disappointed in me for this, but I promise you that I tried extraordinarily hard. Not only in terms of dealing with the pain etc, but also in terms of how many waking hours I spent on research and theorizing, despite how much it exhausted me. And I'm kind of sad that I feel like I got fairly close to cracking this disease, more than many professional researchers, but couldn't finish. It's just a really hard task to do mostly on my own (I have had lots of help with caregiving and many things, when I say "on my own" I'm purely speaking about the research).
If anyone has any ideas about a) how to expedite a passport faster than the standard time of a month or so, or b) avenues that wouldn't require a passport somehow, please let me know.
What disappoints me the most other than knowing that this disease is probably treatable (just not by me), and knowing how close i was to figuring it all out, is knowing that due to the wave of post covid ME/CFS patients and various factors, a cure will probably be found for the next generation of new patients. I'm envious of them, although they may face additional challenges due to environmental toxicity.
This is not an impulsive decision or borne out of mood swings or depression, it's a decision that makes rational sense if you think quality of life matters as much quantity.
