Over the last several years, I have gotten to know a young man who may be one of America’s best writers and his name is Samuel Kronen. He is only 29 years old but is — as that cliche goes — an old soul. After a relatively normal upbringing, his life turned upside down when he was diagnosed with a “disabling chronic illness known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a post-infection neuro-immune disease.” Since then he has been locked into a physical and existential struggle with his body — what is the meaning, purpose of this suffering? Perhaps the most insidious aspect of the disease is that it is invisible to the naked eye, not only to family but even to the medical field. What is like to appear to be normal when beneath the skin everything is abnormal? Out of this suffering, Samuel has chosen to wrestle with the meaning of his existence in the written form. While I know that my substack is devoted more to the culture wars, isn’t the point of this fight to return to our greater humanity? Below is a link to his new essay on his brand new substack page and beneath that are the first several paragraphs of Samuel’s new essay followed by a link.
“Once upon a time there was someone who somehow did or did not achieve that favorable, no matter how delicate, balance between essential human values on the one hand and cosmic absurdity on the other.”
Albert Murray, The Hero and the Blues
A few years ago, I had the strange little thought that I could somehow become more human. I was slicing up some onions into lean cylinders to simmer into a garlicky mound of oil and balsamic drenched vegetables, each cut feeling smoother and more precise under my hand than the last, when it seemed out of nowhere that the more sensitive and conscious I was of my own experience, with every swift movement of the blade, every slice of the onion, every breath and sensation and change — holding my attention through each little maneuver as one unbroken stream — the more human I was being. Like a high level Jiu-Jitsu practitioner who is at once in the moment while always anticipating the next move, it struck me that there was a right way of doing things that was especially human — at once spontaneous and intentional, natural and planned. An image arose to accompany the thought, too, of the Good Human, someone who is totally present in everything they do. Maybe, I thought, I could become a good human, a real and realized person, awake and alert and alive to everything I am and everything that happens in each new moment, leaving nothing unseen or unfelt.
It was really more of an intuition than a rational thought. How could anyone be more or less human, when we are all already human? How could any of us become more of what we already, in fact, are? I finished up my tasty little batch of glazed veggies, one flavor smelting seamlessly into the next to transform into something altogether new and delicious, but the thought never left me. Certain moments stand out to us, I think, because they come to take a deeper meaning in the narrative arc of our lives, and meaning is revealed only in time.
Strangest of all was the timing of the thought. I was about half a decade into a complex and disabling chronic illness known as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a post-infection neuro-immune disease that, as far as I could see, had burned my entire life to the ground and left nothing but a little trail of ashes and rubble of a life once lived in its wake. To say the least, I wasn’t feeling like much of a human being at the time. What began as a routine bout with a virus as a teenager has since cascaded into a living nightmare of the human body. The disease drains your essential physical and cognitive energies and breaks down the immune and nervous and endocrine systems at a level that medicine thus far cannot reach to create a situation of permanent disability, pain and malaise that, in my case, seems to only ever and always get worse. My body no longer makes any sense and has devolved into a series of contradictions — exhausted yet sleepless, overheating in one moment and freezing cold in the next, needing of nutrients and yet unable to digest solid food. It is in the nature of this disease for almost any amount of exertion to make the condition worse, what those in the know refer to as PEM (post-exertional malaise), reversing the natural course of human development. This is an anti-human force that eats life.
To put the icing on the cake, ME/CFS just happens to be among the most controversial illnesses in the world, described in a piece last year for The Atlantic as medicine’s most neglected disease.Human beings do not respond well to that which they do not understand, and this disease is little understood as of yet. For reasons having to do with the complexity of the illness and certain blindspots in modern medicine, there is almost no institutional support for sufferers of ME/CFS and we are left to navigate the cold bureaucratic indifference of the American healthcare and welfare systems on our own. Skepticism, disbelief, judgment, even outright venom accumulate between you and the world in the absence of a clear diagnosis or a visible disability. I was shocked and horrified to discover, after first getting sick, that not only did nobody in my life seem to understand what I was going through – or that I was going through anything at all – but the very people who were supposed to help me the most, healthcare providers, were often the hardest to deal with and would form some of my worst and most isolating experiences. When a medical professional tells you that you are perfectly fine when you are most certainly not, it doesn’t feel like the good news they seem to think it is. No one in the world, seemingly, can tell me what’s going on in my body from one moment to the next, and that not knowing kills me.
The whole experience has been absorbed as a kind of loss, of energy, of self, of freedom, of relationships, of meaning, of innocence, of faith, of visibility, of a past, of a future, of a life. The feeling that emerges is one of sheer alienation, from other people, from oneself, and from life itself.
It is in the nature of a virus to replicate and overtake its host. The late Christopher Hitchens, in his final book Mortality (2012) which he wrote while he lay dying of Esophageal cancer, likened his illness to a kind of alien occupation of his body, a little bug or germ. With conditions like mine, it is less of an occupation of an otherwise healthy body than the entire body becoming an alien force against itself. To be sick like this is to feel at once trapped in the body and yet completely dissociated from it – desensitized to positive experiences and hyper-sensitive to the negative. The disease animalizes the person, tethers them to the lowly and base aspects of the human condition and forces them to bear the brunt. As the psychological reactions compound the physical symptoms, what began as a virus of the body soon becomes a virus of the mind and spirit. A little alien emerges from within to sabotage our best efforts, a dark “anti-self” composed of our worst parts that calls itself “you.” The virus replicates and overtakes its host.
Thank you, Eli. Reading Samuel Kronen's essay makes me think of what purgatory must be like. I sit here a bit stunned after reading, and count all my blessings. Thank you for this introduction.
Thank you, Eli. Reading Samuel Kronen's essay makes me think of what purgatory must be like. I sit here a bit stunned after reading, and count all my blessings. Thank you for this introduction.