Trigger warning: death, suicidal ideation, hopelessness, illness, strong language.
[Update 5/23/2023: I almost removed this post. But I think it’s an important peek into how I processed my suffering. This was a multi-month period of great weakness. What I realize now—but didn’t back when I wrote this—is that this was my cry for help. I’m not proud of it. It’s embarrassing. But I think preserving it is important to help other sufferers know that they weren’t alone in this valley.]
This may be my last post. It’s dark. And I’m too lost in the dark to write much more after this.
I haven’t posted in days. It’s been so painful and bleak. And only worsens. Hitting new lows. With new symptoms.
My rock-bottom relapses (on my chart) are so frequent now. I had always bounced off rock bottoms in a day or two. But not anymore. Now, I’m stuck at the bottom, scraping the ground. It’s scary.
I’m still fighting, but at this rate, I may need to go nuclear with palliative care. Morphine, oxycontin, fentanyl, or something alike.
There is a scene in Breaking Bad when Walter chases down the man he had just mortally wounded. Walter finds the man, Mike, sitting calmly in the grass, then starts apologizing to him. But Mike just quietly says, “Shut the F up—let me die in peace.”
That hits home for me. The need to go in peace.
Up until moths ago, I was terribly afraid of dying. The pain is so horrible that it convinced me my body won’t survive past sleep. If I close my eyes, they will never open again. I was terrified, again and again.
I’m not so terrified of dying anymore. Not like that, at least.
But now, I am terrified of a traumatic, horrible death.
And I think this is partly why suicide is so seductive. It’s a way to avoid the trauma. To go in relative peace. To use a tragedy one can control, to end the tragedy one cannot.
And if one loses all hope, and only sees pain—my God: can anything be more seductive?
I recently shared to a few close people that I was applying for Medically-Assisted Euthanasia (MAE). Things had gotten really bad, and I wanted to see if I’d get approved.
The backlash was fast and forceful.
So I’ve decided never to pursue or bring up MAE again.
But before I close the book on this topic, I’d like to clarify what MAE is. And touch on America’s strange, unique relationship to it.
Americans view MAE and suicide as the same. But they’re different. Similiar, but different.
Suicide is a unilateral decision and action—and it is indeed terrible. I’m against it.
If you live, you can fight. And if you can fight, there’s hope.
But a suicidal person is blind to hope—even if it’s right in front of him. So others must be there, to confirm or correct his blindness. In this sense, MAE is not unilateral.
In the few US states that allow MAE, a doctor must be there throughout the process. The doctor must document clear clinical evidence that a patient is, indeed, medically hopeless, terminal, and suffering.
This American standard is a very high hurdle. Only a fraction fo MAE applicants get approved. In fact, to date, only one person with severe MCAS/CIRS/toxin illness has ever been approved for MAE.
It’s probably because Americans hate MAE. And so we pummel MAE doctors with lawsuits. So doctors will only approve if they have clear, unambigious evidence that a patient is medically hopeless, terminal, and suffering.
Outside the USA, MAE is far more liberal and easy. There, it’s more akin to suicide.
But in the USA, MAE is like hospice care—albeit, shortened into a single day’s stay rather than weeks or months. MAE is instant hospice. Or, rather, hospice is slow MAE.
My chances of getting approved for MAE was very unlikely. But this isn’t why I won’t pursue it.
I won’t pursue it because everyone was so repulsed by the idea.
They were repulsed not by MAE per se, but by my wish to apply for it. They were repulsed by my state of mind.
Theirs was an instinctive repulsion. Triggered by unquestioned default beliefs. And they lacked the time to investigate the cultural prejudices underpinning these beliefs.
Only my ex-wife has come around to believing the full nature of my illnesses. Others still love me and make an effort to believe me to some degree.
But the vast vast majority of people still believe to this day that I’ve made all of this up. All of it. That this is just one elaborate, decades-long hoax for attention. One good thing is that I know who they all are now, and we can steer clear of each other.
None of this is suprising. To be chronically ill, after all, is to be chronically gaslit at worst, or chronically misunderstood at best.
But it’s far more traumatic to see a frog’s head be cut off that to see it be very slowly boiled alive. The latter isn’t even memorable.
So I understand where the repulsion comes from. And I just want to end this pain—not to stir up controversy.
Suicide is frowned upon almost universally across human cultures.
In the USA, conflating MAE for suicide makes MAE very hard to get approval for. And I now think this is a good thing.
It’s precisely because Americans view MAE and suicide as the same, that MAE remains, ironically, unlike suicide in the USA.
So I hope this American prejudice persists. I hope MAE stays out of reach for many.
Now I must admit one thing. One does choose the timing and circumstances of one’s passing with MAE. But so is true with hospice care. And so, for me, Hospice will now be my nuclear palliative option—if it ever comes to that. It is the socially-acceptable way to go in the USA. The ironies and inconsistencies are so strange. But there it is. America.
If a loved one ever tells you that they wish for MAE, please respond with compassion and sensitivity.
Because such wishes stem from suffering ignored or pain dismissed.
So please: use wisdom when talking anyone down from that wish.
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