Slowing Things Down.
On uphill battles and blood spatters.
My heart’s been warmed by all the kind responses to my last post about possibly stepping away from writing for awhile after taking another blow to my already precarious health. I’ve taken the time to look back through and really absorb your messages and comments and reflect on what it means to receive that kind of care and attention and, really, that kind of love. It blows me away, to be honest. It’s a lifeline I very much need right now.
I think I’m going to keep this Substack as my sort of blog for now — observations and reflections — more first person and less expository, until or if I’m ever well enough to re-launch the initially planned essay series on suffering. I may still publish the essays I’ve already written in smaller portions as I get more comfortable with the change of pace, as well as other shorter posts. We’ll see. That feels more honest to me right now, and it might even help make for the deeper connection with readers that I really wanted to achieve through this project. It’s about working within limits and conserving energy and accepting reality and being kinder and gentler on myself and my readers instead of straining beyond what is natural or good to finish these long essays that I barely even have the cognitive capacity to read through, all out of a desperate need to be appreciated in some way. There’s wisdom in chewing smaller bites, I think, and in any case I don’t have much of a choice now but to slow things down.
My life has for so long revolved around little more than squeezing out some hours of writing in the morning before my brain turns to damp sand for the rest of the day, to the point where the disparity between my writing and my actual life has just gotten too ridiculous over the years. I had an experience recently that really brought this reality painfully to bear, when a family member who hadn’t seen me since last I was healthy came to visit for a couple weeks, and I had to watch them sort of realize me in my vulnerability for the first time, whereas I’ve otherwise managed to hide from people and exist in my own world. It made me self-conscious of how far gone I’ve become. Any of you could spend five minutes with me and it would be clear as day that I’m very much not okay, while these elaborate essays might give the impression that I’m doing just fine.
I’ve been asked both in earnest and with skepticism how I can write the longer essays if what I’m saying about my illness is true, and the honest answer is that it took a ridiculous amount of time and I was completely obsessive and neurotic about the writing process. Now I’m just trying to focus what energies I have on being okay, or trying to be anyways. I think I need to help myself before I can really be of service to anyone else or provide anything of meaning or value to the world, and ultimately I would rather just be okay in myself than something special in other people’s eyes.
Here’s how I’m thinking of it: Pretty much since I started writing seriously, nearly a decade ago, I’ve been taking my blood that’s metaphorically spattered on the wall and smearing and smudging it around with my finger tips so that when you step back it forms a pretty and symmetrical picture. There’s honor in this, I think, and honestly I’ve gotten pretty good at it. But at the end of the day, it’s still my blood that’s on the wall, and it’s better not to be bleeding. That pain will always be there for me to use, should the day come.
It’s true that suffering can be deeply useful in life and art — it might be the only place from which good art and wise living come, from not getting what you want — but I think it is most useful after the suffering has subsided when it no longer dictates your emotional state and you can look back on the experience with some distance and clarity. It is important to go through difficult things in life but, just look at the language of it, the idea is to go through them rather than exist in them perpetually, unlike my disease which has no cure and seems to defy nature itself. It’s hard to say anything about this experience while I’m still so deep in it; I’m still too injured to really trust my point of view. So long as you are trapped in hell, everything you say and do will be tinged by the flames and embers.
And yet sitting down to write has been one of the few consistent joys of my life throughout my twenties, and there’s nothing I want more than to regain the health and energy to get right back into it. You have no idea the lengths I’d go or the horrible things I’d do to make that happen. It has never been an issue of motivation or desire for me. In a way, this illness has sort of spared me the burden of writer’s block: it’s always been an issue of how do I get these feelings and thoughts onto the page in a coherent way while being so physically up against it. Writing is incredibly physical, no one really tells you, and my flesh vehicle has been operating on empty for years.
I started writing things down privately as a way of coping with my illness when I was about nineteen or twenty, for my own pleasure and sanity. No matter what happened to me, and many things did, I always had these thoughts and these feelings, right here, in my own heart and mind, to do whatever I wanted with. It wasn’t until it was clear that my health wasn’t going to drastically improve anytime soon – enough to get a job or go back to school and start my life up again – that I threw my chips into trying to get published and began smashing face-first into the brick wall of reality and editorial standards for much of my 20s. So the will to write always emerged out of a certain manic desperation. I was always chasing a certain type of catharsis, a release from the pressure and boredom of my everyday life.
The way things went, it was right as I was getting my footing on the sort of alternative magazine circuit, Quillette, City Journal, around midway through 2021, that my condition began to deteriorate at a much faster pace after developing Gastroparesis (where your stomach muscles are literally paralyzed) and other signs of severe nerve damage. It’s pretty much been a steady downslide ever since. I haven’t eaten a solid meal since April, 2021. I can’t remember how long it’s been since I had a normal healthy night of sleep. The pattern’s been that my condition gets significantly worse over time, gradually and then all at once, and with each new downturn, whether the lowering of my baseline or the development of new symptoms entirely, I feel a little bit closer to non-existence — with some small victories and minor successes along the way, enough to keep myself going but not enough to make anything happen really. At a certain point it feels masochistic to try and suckle meaning from sheer chaos and horrible luck.
Forgive me if this seems a humble-brag, but I cannot express just how difficult it is to become a writer — or become anything or anyone at all — with such a limiting health condition (ME/CFS), and it is near impossible, when you are developing in certain ways as a writer and a person while your health and life are only ever and always getting viscerally worse, to really feel like anything you’re doing is progress or has any purpose. No matter what happens, good or bad, your experience is always the horrible same. So much of life is a momentum game, and with this illness you just can’t get any steam, it’s always an uphill battle — it feels like you’re only going backwards.
I look back on myself over the past ten years of pathologically writing my way through this illness and I’m both deeply impressed with that person and feel a great deal of sympathy for him, for holding strong against reason and reality for so long. It’s a bit cringey in hindsight. And while I don’t regret any of it, the time has come to take better care.
My life will always matter more than my art, and while that may seem obvious, it really hasn’t been obvious in a world that can’t sit still and which equates productivity and output with essential human value and worth, which cannot honor a person’s being but only their doings. Ultimately the work of art invariably flows from the artist’s vision and sense of life — the voice calling out from beneath — and anything I might do creatively in the future, a memoir, a screenplay, whatever, can only be a reflection of my own human experience and what I’ve made of it. I think it takes something to realize that it’s not what the person creates that’s most interesting but the person doing the creating that is the interesting thing.
Truly I was excited to do this essay series and look back on this eleven year bout with illness in a new way, a chance to access and process memory. A lot of bad things have happened to me that flowed either directly or indirectly from being sick, and it gives me a sense of peace to reflect on the different layers of this journey and how I got to this place. When you live in an unchosen state of suffering for a good deal of your life, you kind of just come to absorb and blame yourself for all the terrible things that happen to you as a consequence, or I have anyways. The catharsis of these essays for me was in seeing my pain from a higher perspective and ultimately forgiving myself and other people for things I’ve been holding onto, to let go.
For instance, the follow-up to my first essay on alienation had to do with innocence and initiation and the period of time when I first got sick at college and was forced to drop out of school, followed by the sort of gradual fall from innocence of that first year of illness when seemingly nobody in the world, from doctors to friends to family to my girlfriend, could understand or help me at all and everyone in the world seemed to be actively judging me for something I couldn’t control — when this chasm between myself and the world first opened: a year that ended with me sitting in a psychiatric facility contemplating the end of my life. I was so confused the whole time, it breaks my heart to think about. I was just a kid, really. I had no way of understanding what was happening to me, inside or out. ME/CFS is a poorly understood disease that is only now starting to receive the attention and concern it has long deserved, after many decades of medical neglect and abuse. The deal with this illness is that it’s terrible by itself, the symptoms I mean, but it also seems to make things impossible with other people, who have a hard time understanding your limitations in a way that ironically reflects back on their limitations (medical providers more than anyone), to create another more interpersonal and spiritual crisis in your dealings with the world and your encounter with reality.
What I realized through the writing, however, was that, in many ways, it’s still the same struggle for me now as it was all those years ago, the same frustrations with and misunderstandings from other people, the same blindspots in the healthcare system, the same complexities and hardships and insurmountable barriers in any type of intimate relationship, the same general disconnect and sense of alienation, the same fundamental brokenness and almost cosmic-level loneliness, and beneath everything the same feeling of being trapped in body and mind and the same overwhelming desire to get out by any means necessary. The overriding and undergirding feeling has not changed. It’s awful to realize how little has changed.
In more than one way, I was never able let go of the life I had before I got sick, was never really able to mourn and process that loss, was too busy gasping for air. I think I missed an important initiation rite into modern adulthood when I dropped out of college and moved back home and it still hinders me in certain ways, and at least part of this project and writing in general for me has been about undergoing a different kind of initiation into the human experience by seeing my personal suffering as one link in the chain of the larger human suffering in which we are all connected. I’m not there yet.
Anyways, writing was how I kept myself going all these years and for that I’m grateful, but these memoir essays are clearly not the path forward for me right now. I need to figure something else out here, though I don’t know what — to gain some self-awareness or find God or something. There’s a lot of basic adult stuff I never really learned how to do well, like hassling with insurance or applying for government programs (I’m currently waiting on a court hearing for my disability claim), not that these things are unfathomably difficult, more just tedious, but it’s about priorities and mental hygiene and being in the world and these are the sorts of things I need to focus on as I make this move out to New Mexico and try to get my life on a different track. More than anything, I need a change, even if it comes at a certain risk, and sometimes you need to take a risk to give yourself a chance of change.
If I’m ever going to be a foot soldier in the war to eradicate diseases like mine, or if I’m ever going to break out of this death spiral I’ve been trapped in, I need to pull a Dallas Buyers Club and take full ownership of my life and my illness and treat all of this as a life or death matter, because, well, it is. I only have this one life, this one chance to set things right, and I’ve lost too much time already. I like to think I’m at that point in the story when Ron Woodruff (played by Matthew McConaughey), our druggie-hustler-cowboy protagonist dying of AIDS (based on the true story), shows up in Mexico at a holistic health clinic after losing everything back home and nearly killing himself, trembling from sickness and on his last legs, before finally getting the medical help he needs and turning his life around to help others with the disease before he eventually passes from it. I don’t know if something like that is possible with my illness, but I hope it is. Perhaps there is another kind of catharsis in store for me yet.
Of all the terrible things about this illness, it really does make me feel for the suffering of others. I just want to double over thinking about how much suffering there is out there in the world and how deep it goes for each person, how there are so many people for which things will never be okay, and that sadness turns to anger when I think about how little most people care — when I think about their frothy innocence. It’s not that people mean badly, for the most part, it’s that they simply do not know and do not want to know. There’s something about being exposed to extreme suffering that forces you to open your eyes in certain ways, I think. Someone I know online with a similar illness wrote on Twitter recently, “I feel so overwhelmed by all the suffering in the world of conscious beings now that I understand better how deep the depths of conscious experience can be.”
I really do believe that our suffering is connected, I do, not in some vague cosmic sense but in the very real sense that deep suffering looks and feels the same way whoever it is happening to and whatever the cause may be. That is our point of arrival, though it is too often our point of departure. We are all very breakable, but within our breakableness lies the key to our interwoven humanity.
Allow me to say some things I will probably and hopefully come to regret saying: I don’t want to die in some terrible way, dangling from a tree or face first on my steering wheel. But these things happen, and not just to perceived “cowards,” whatever that could possibly mean in the context of literally facing your own death, but in many cases to normally resilient people who are making impossible decisions according to the realities with which they are faced. I’m sorry if that’s hard to look at. People are not invincible, and we all must die our own deaths. Just the other week, two patients with ME/CFS underwent euthanasia on the same day after suffering in hopeless silence for years — Céline Corsius and Faustine Nogherotto— showing that doctors would rather literally murder us than treat our conditions. This sort of thing is extremely common among my demographic. What do you do with that kind of suffering? Where do you go with that? How would you feel if you were that person?
I don’t think anyone can handle these illnesses at the extreme. It is simply living death. I am almost certainly never going to have anything close to decent health in my life or know anything like normalcy again, never going to have kids, never going to do this, never going to have that, etc. It’s sad, man. It’s not what I ever imagined my life would be. I now see two paths for myself, but only two: One in which the illness keeps progressing until I can’t take it anymore, and another where I make small strides toward betterment and turn this ship around somehow. We’ll see how much better or worse things can get. I want to find out, one way or another. I can’t die without knowing what was possible. Maybe I’ll stage a comeback later in life, and maybe my life is already over and all of these years and all of this pain has just been the slow process of realizing and accepting that. I can’t call it.
Though as long as I’m conscious and suffering, I like to think I’m still growing and changing, even if it’s not obvious how, or at least it’s still possible to grow and change. And as long as I’m open about my struggles, I think I’m in far less danger than if I were to hide and conceal. And so long as someone out there really cares about you, there’s still hope, there's still a chance, there’s still reason to go on. If I can spare my loved one’s the unnecessary grief of losing me young, that seems a worthy cause. And that’s all you need to stay alive, really, just a chance and a reason, a possibility of tomorrow and some love to get there. Beyond that, it’s just a matter of faith. A day may come when I can look back on all of this from a better place, when I can see my prison cell from the vantage of freedom. But that day is not today and may never come. Until then, it feels good to come out and say these things. I’m still trying.
Let me know your thoughts and feelings down below.