Thread by @jenbrea

Our community takes a very non-judgmental approach to suicide because we understand the extremes of suffering people have had to endure. All I can say is that it gets better, even if your physical health does not, and it is still possible to live a very good life. #longCOVID

https://twitter.com/AlisaValdesRod1/status/1471443059065769985

My first three years, I had many dates and many bargains with myself. I thought that my post-viral illness was going to end in me taking my life. “I can’t watch myself be destroyed like this so in six months, if things don’t get better, I’ll…”

I’d make it to six months, then give myself another six months, then another. My symptoms were SEVERE. @unrestfilm does not begin to touch what I actually experienced.

What I will say is that somewhere around year three (if you are a long hauler you may be thinking, “What? Three years of THIS?”), if you haven’t recovered, a shift happens. It may come at a different point for different people, but for many if not all of us, it happens.

I’ve seen it happen for other people, but I’ll describe what happened to me. I share this because I want to offer hope, not of the “they’ll find a cure tomorrow” type, because honestly, even if they spend billions, it could still take years, or decades.

But a more practical kind of hope, a hope that is: this world can be very cruel and very hard to understand, but you are stronger than you know. And by strength I don’t mean the strength to “beat it” or even the strength to endure. I mean the strength to change.

As these ideas are coming, I realize this is probably a memoir (which…I don’t see myself writing!) and not a Twitter thread, so I’m going to gloss over a lot. I really don’t want to oversimplify things or overgeneralize, either. Gah! It’s too big a topic. I’ll make a few points.

1) I STOPPED TRYING TO GO BACK. So much of the psychic pain the first few years came from trying to create a future that brought me back to “the way things were.” Or mourning/raging what I lost. That is completely normal. I could not have skipped that step.

But I didn’t stay there forever. I started to focus on where I was, right now, in each and every moment (losing executive function actually turned out to be an odd blessing!), on what I *could* create from that place.

Was it what my 20-something, “I am bulletproof” self would have imagined creating? No. Of course not. It was very different. But it was…better, in so many dimensions (save the physical suffering).

This illness stripped everything I thought I was or wanted to be away from me, brutally. However, there was a freedom that came from letting go of all those old concepts, a freedom that I eventually realized was the process of becoming DISABLED.

Now, I know people who have struggled for decades with the idea that they were disabled, who spent YEARS confined to their houses rather than be seen outside in a power wheelchair. That’s how f’ed up our society’s ideas about disability, the body, etc. are.

There is so much freedom, power, wisdom, culture, and community that comes from and with being proudly, openly, deeply disabled. From knowing that you are not alone but also from knowing that you are not unique, that you are “walking” a road BILLIONS of humans have before.

There has been a gap, a misunderstanding between the disabled community and chronic illness communities that I won’t get into here. I’ll just say that there is a false dichotomy between fighting for access (it’s the world that disables) and fighting for medical treatment.

To better understand these dynamics and to forge your own answers to questions you might not even know (yet) to ask, I recommend watching @SurviveAPlague @unrestfilm and @CripCampFilm as a sort of triptych. All of these films have a strong undercurrent of community, pride, joy.

2) MY RELATIONSHIP WITH MY BODY GOT BETTER. That may be a strange way to describe it, but it encapsulates a few ideas. One, I found treatments that helped (a little). I went from 20% function to 50% function and that was wow, luxury!

For me it was herpesvirus antivirals, even though that wasn’t my initial infection, Mestinon, an acetylcholinesterase inhibitor, fludrocortisone, for POTS, and benadryl for MCAS.

(They don’t for everyone and there are many other things that didn’t help me but have helped others.) It took probably five years to find out that these helped.

Not one intervention was just handed to me by a doctor. It was always through other patients that I found out about something, and found a way to get it prescribed. The pace of #longCOVID peer sharing/experimentation is at least 100X faster. (Join communities if you haven’t yet!)

Equally, and perhaps more important, my body started to become less mysterious. I was no longer having wild swings in symptoms, or symptoms that were frightening. A lot of things never went away but I got used to them. I started to notice patterns.

I started to feel more “in control.” Eventually (and this wasn’t conscious at all), I stopped planning dates. I didn’t need to anymore. A big thing was learning how not to “crash” (I know not everyone w/ #longCOVID experiences PEM, but it is a very specific kind of mind f***ery)

And then of course, a lot of people just…gradually improve. While I was not one of them, know that whether you find treatments that help, learn things about your body that help, or just…get better, the body you inhabit now and your relationship to it may well change.

3) I FOUND PURPOSE. If you have a past career or a budding inner scientist, activist, or artist inside of you, then yeah, there might be a more direct link between going through this experience and finding purpose in it/through it.

But I’ve seen people find ways to find purpose through so many avenues. From being a mother, including under circumstances that may be hard to imagine. Or for simply caring for others in our communities. Or through self-love, self-care, or simply choosing to persist.

4) I MADE NEW FRIENDS. Becoming disabled meant embracing an identity and joining (well, several) communities but it also meant meeting some extraordinary people. This experience can be incredibly lonely and isolating, but it doesn’t need to be, at least not all the time.

5) I FOUND OUT WHO I REALLY WAS. I admit this is an ongoing process and it is hard to describe, but it is really a spiritual one. I only understand that in retrospect. When I got sick, I was not really a spiritual person, at least not in a conventional sense.

There’s something about stripping away all of the BS that everyone is raised in, I don’t care what your upbringing was, or the culture you were raised in. There are so many ways we are not truly free. Removing all that and sitting with what is left—yourself—can be revelatory.

And what I found at the bottom of all that was love. And yes, throughout this entire experience, I have been profoundly loved by the man that I married, and I understand how rare that is. But the true love that I found was self-love, self-care, self-respect.

It took a decade of severe illness to get there. Had I not gotten ill, it might never have happened over the course of the whole of my life.

That’s just one person’s journey. It’s been a truly extraordinary one and I never could have possibly envisioned it in year one, two, three, or even five. And yet, looking back, I am so grateful for it. I felt that gratitude even in the midst of severe illness.

Maybe that was the true turning point. The moment where I realized that even if I probably would never get better, I would never take back getting sick, even if such a thing were possible, because I valued the person I had become, the new memories I made, far above the suffering.

I reached that place of profound gratitude, profound acceptance, profound love. AND YET, I never one day let go of the desire to, PLEASE GOD RELEASE ME FROM THIS HELL **TOMORROW**. I was proud of being disabled and yet, never stopped fighting to “get better.”

.@SFdirewolf, who is a beautiful writer, has spoken a lot about being a disabled oracle. There’s a term something like that that I think we need, which means roughly, “the state of arriving at the balance point between apparent dichotomies and knowing that they are all true.”

I intended this thread as an offering to people struggling to see beyond the beginning. It is primarily a psychic and spiritual offering. It won’t put food on your table or save you from homelessness, or get you medical care, or stem the physical pain. (At least, not directly.)

We all need to have our basic needs met. I know people who live out of their cars or in tents. I know people who are billionaires. While there are many ways that money makes things easier, I am not sure it’s the biggest factor in terms of who survives a dark night of the soul.

I have no idea how you will face your challenges, your internal and external circumstances. That’s your journey and we are all different. All I know is that you can. I’ve seen people living in all kinds of situations, facing all manner of extremes. It truly does get better.

Last thing, and I would be remiss if I did not say this, never forget the possibility that there is a ****neuropsychiatric dimension to despair, hopelessness, or any emotional state****, that may or may not be readily treatable by conventional psychiatric management.

Cerebral hypoperfusion, neuroinflammation, intracranial hypertension (for example) can fuck with emotions, perceptions, and the very ability to think, independent of external circumstances.

I can’t tell you how many times I have thought “I’m not going to make it, I am going to die” only for that feeling/need/reality to pass once my brain was in a better place.

It would come and go and never completely went away, but I started to be able to recognize the difference between what was “real” emotion pain and what was my brain experiencing extreme distress. (Seek help, regardless.)

These last ten years, I have lost more people I have personally known to suicide than most people will in a lifetime. And I know that in most cases, it was a well-planned, long thought out, exercise of the right to euthanasia after decades of suffering.

The need to balance apparent dichotomies comes into play here, too. Most of these people had overcome multiple dark nights of the soul, over many many years, and simply decided it was time. We hold all these people in love and understand their choice completely.

And so what I would want say to all “long haulers” is simply this: try, if you can, to commit to getting through the next few years, even if it is six months at a time. Because you don’t know what awaits you on the other side.

It could be incredible. It might be a cure. (Or more realistically, “disease-altering treatment.”) But it doesn’t need to be a cure for it to all be possible and worthwhile, even if now, in this moment, it’s hard to see the “how.”

And if you can’t do that, that’s OK, too. Know that either way, no matter what, you are deeply, deeply loved. x