The following is the last in a series of pieces on some of the principles and ideals animating this substack and specifically on the significance of coping. It was written last year during a very different time and will likely be the last of these more philosophically-toned pieces on suffering for a while. I’ve finally moved out to New Mexico, the Land of Enchantment, where the air is clearer and dryer and potentially healing for me, which is cool. More on that soon. As always, thanks for enduring me and I hope some of this has landed so far.
Everything I’ve been saying here, about the meaning of our suffering, comes out of my own struggle to find the meaning of mine: to use my experience and my pain, which is all I have to use, to become a more conscious human being. This whole illness nightmare has subtracted me from the lives of other people and now I’m looking at what’s really happened to me over the past decade and trying to use that energy of seeing to find my way back into the world again. I want to understand enough to describe what has been an overwhelmingly strange and painful and humiliating and terrifying and downright confusing experience in a human way that other people with different experiences and problems can understand and relate to and even find some value in. That would give meaning to my suffering. That would put my pain to good use.
What you realize, after groping in the dark for so many lonely years, is there are other people out there who feel just as you feel, however different their experiences may be. While the specifics of my illness are fairly unusual, the feelings that have emerged from it are entirely human, and nothing human should be alien to me. And maybe that’s the case with everything, that those things which look ugly and strange and irrational to us have an underlying sense to them that point us closer to the meaning of being alive. We all have to deal with our own barriers into the human experience and nestle our way into the lives of other people and recognize how all of our situations are interrelated and interconnected in all sorts of interesting and compelling ways and to find some shared warmth and light in how doomed we all are.
Still, I have no intention of letting anyone take away from the specific meaning and reality of this experience. For some strange reason, the unusualness of my health situation has been taken as a challenge by some, and for some even stranger reason, many have deigned to tell me that my case is not special and I should just try to get on with life like everyone else, if only to shut me up about it. Oh yeah, and many of these people have been doctors. Seeing the human side of things can often mean seeing through people’s bullshit. Conditions like mine — ME/CFS and other post-viral/post-infection illnesses — are specific, diagnosable, organic diseases that are absolutely “real” in a medical sense and not a consequence of weird psychology or bad attitudes. There is something about the experience of this illness that the world needs to know, that other people would do well to hear.
Without being too dramatic, this has become a matter of survival. If I can’t figure something out here and somehow turn things around — to re-find my connection to the world and once again feel a part of life and other people — there’s nothing left but pain. What I’m trying to do is put my energies in the right places and care about the things that actually matter, to be kinder to myself and more accepting of things, to move through fear and cope more honorably, to just do everything I can with what I have, nothing more and nothing less. We are all just coping with various realities and navigating our own limitations and vulnerabilities and dealing with our suffering and darkness in our own particular and personal ways. This is what people do. We bear pain, we cope, we suffer, we get by, but life is about more than just suffering and coping and surviving. One must also live, move, change and become. Now I want to pour all this suffering into something worthwhile and not let any of it go to waste.
There is no school of suffering on offer to teach us these things, how to accept reality and make light of the dark, to use our suffering to go deeper, to become more conscious and human despite or even because of what we’re up against. I don’t know how to cope with the fact that I may never be remotely healthy again, I may never eat solid food again or enjoy life’s pleasures, that I may never again know love or community or have anything like a normal life. I don’t know how to be strong, or what strength would even mean in this case. I don’t know how to accept having this sick and ailing body that makes me ever vulnerable before the often cruel and callous forces of the world.
It’s been a long road and I still don’t know what to make of it. Maybe it won’t make sense for a long time. Sometimes I still feel like that alienated young man wandering aimlessly around Manhattan, asking and answering questions to himself in a void, lost and broken and searching, for something, for anything. Sometimes I feel like there’s no waking up from this nightmare, that my life is truly over and my best days are behind me and it’s only going to get worse and harder from here until the reaper comes. Sometimes I feel like I’ve just spent too much time alone, that something has gone wrong inside that can never be made right again. When I spoke earlier about the spiritual crisis I’ve been facing, that was the gravity of my situation finally settling in: The realization that this is for life and there’s no way home — the only cure is death.
But there’s something else, too, another, quite different feeling that’s harder to explain and feels strange to even try. There’s something about this whole nightmare scenario, about living on the edge of reality and society, about bearing the burden of human vulnerability and limitation and being forced to remember something that other people spend their lives doing everything to forget, about seeing the bottom and knowing there’s only so much further to fall. It’s good to know that something like this can happen to you, to anyone, that the universe can take it all back, everything you once thought belonged to you, at any moment, and forever.
While it can still always get worse and probably will, in a way the worst has already happened, and now I’m thinking about all of this as though it were happening to anyone. There’s still a part of me that wouldn’t trade my life or my suffering, that wouldn’t take it back for anything, and would do it all again, in a heartbeat, because it’s my life, my pain, and all those moments — the horrific and the gorgeous — have to amount to something. I was human once, and whatever cosmic speck I left behind can never be undone. And everything I’ve done over the past decade to cope with time and pain and contend with my reality, all those little ticks and neuroses and weird fantasies and imaginings and all those strange pathways of the mind taken, I can now see has served the vital purpose of keeping me alive. It’s something of a human achievement just to have made it this far.
But you need something called hope, and something else called faith, to get through, hope that things will get better and faith that it’ll be okay even if they don’t get better — hope that goes beyond the pain of the moment and faith that goes beyond the scope of our lives.
At this point I would take literally anything, any improvement to my life or health, and it wouldn’t take much to change everything. Until then, I’ve learned to live in my imagination and find meaning and possibility there. I try to remember and envision what good health and good living feels like and hold that vision in my mind and heart. I’ve learned to live secondhand and derive joy and pleasure from the lives of others, to be satisfied just to be part of this world and this life. I try to laugh as much possible, because, in a sick way, this has all been kind of hilarious. I draw strength from others living with this illness, many of whom have it much worse than I do, and from anyone going through anything, from suffering itself and the capacity of the human spirit to persevere. Those poor souls living out the nightmare of this disease are real people, not fake or weak people. These are incredibly strong people, though their strength will never be rewarded or recognized. There’s a wisdom and a discipline to living this way, even if no one else sees it, even if no one else cares, because, at the end of the day, the invisible sufferer is holding the whole ship together. And even if the worst were to happen, and it very well may, I’m grateful for being spawned from nothingness into this marvelous life and having once had the chance to live as a person.
I’m still coping, some days better than others. My eyes still work, and there’s so much more to see. And if nothing else, all this suffering, this darkness, this alienation, has given me something to use that I didn’t have before. There is still something this experience has left to teach me. I still have something left to give.
So happy to get this in my mailbox, Sam! I am looking forward to reading it. So glad you are in NM. I went there many years ago and found it to be a magical place. Wishing you lots of healing under the NM starry sky. Xoxo
Thanks for sharing an update with your readers, Sam! I would love to hear more about your life in New Mexico and how it's helping you. Amazing what sunshine and a change of scenery can do for one -- especially if that person is on a quest to find meaning in life that goes beyond the physical limitations of the self. You are an inspiration.