Chronic Fatigue Syndrome and the Meaning of Human Suffering

There is only one thing that I dread: Not to be worthy of my sufferings.
~Fyodor Dostoevsky

I mean, I got one life, right? Mine. But fuck, I want somebody else's sometimes. Sometimes I just feel like I'm fighting for a life I just ain't got time to live. I want it to mean something.
~Ron Woodruff, Dallas Buyers Club

Fatigue makes cowards of us all.
~Vince Lombardi

The room was silent when my eyes opened, but its walls had become palpably hostile since the night before. I was tired and my head hurt, but in a way that was unfamiliar and terrifying. I felt like my body had been remade of a much denser and heavier substance than flesh and my brain was operating underwater. It was my first and only week of college, September, 2012. This feeling had been building for months by then, since I had fallen sick with Mononucleosis the winter before. Wandering around my dorm in a delirious state of shock, I remembered reading or hearing about something called “chronic fatigue syndrome” and its relation to the Epstein-Barr virus that causes Mono. I saw my future dissolve. Had I known what would happen from there, I don’t know what I would have done. I’m glad I didn’t.

I.

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a condition of persistent and gratuitous bodily and cognitive fatigue. The patient exhibits a broad range of symptoms, from migraines to muscle/joint pain and sleeplessness among many other unpleasant sensations. As the Centers for Disease Control and Prevention outlines: “People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS can be severe; is not a result of unusually difficult activity; is not relieved by sleep or rest, [and] was not a problem before becoming ill.” As a lawyer who suffers from CFS put it, “you wake up one day with a bad flu and it never goes away. Ever.”

CFS is a deeply complex illness with mysterious origins and it is exceedingly difficult to identify and treat. There is no reliable test for it yet, and it is primarily diagnosed by ruling other things out. Somewhere between a million and two-and-a-half million Americans are estimated to suffer from CFS—the breadth of the range is due to the illness’s diversity and it is officially undiagnosed in the majority of cases. While it probably originates in some underlying and as yet unidentified genetic immune system deficiency, CFS symptoms can develop from a number of specific issues—a latent viral or bacterial infection, an autoimmune disorder, sensitivity and exposure to mold spores—and they come in varying degrees of intensity. Some sufferers are semi-functional while others are bedridden. There is no known cure—some people recover, but many don’t.

To make matters worse, the larger society—from the healthcare industry to the welfare system—has historically been suspicious of CFS because it doesn’t fit the typical medical model of disease. Funding for CFS research is microscopic compared to other conditions. The National Institute of Health spends about $5 million a year on CFS, while HIV/AIDS, for instance, receives $3 billion a year as of a few years ago. Its existence was only acknowledged relatively recently by the medical community, and its causes have long been attributed to psychological issues. Since people who are struck by an incurable and disabling disease that nobody seems to understand are going to be depressed and anxious about it, medical practitioners have a hard time untangling the physical and the mental aspects.

Another reason the toll of CFS might be underestimated is that it’s not considered life-threatening. But while that is true in a narrow sense, it’s also misleading. Although precise numbers are hard to come by, the suicide rate appears to be very high among people with CFS—about six times that of the general population. In her suicide note, one sufferer compared her decision to kill herself to those made by the poor souls who leapt from the twin towers on 9/11. “The pain from ME was impossible to describe,” her family wrote in a Facebook post. “She could not go on anymore, not like this without any cure.”

Those sufferers who don’t commit suicide can still find themselves stripped of a full life—career, relationships, dreams, hopes, an ability to participate in and feel part of the world, almost everything that makes a person feel like a person. So much of our sense of identity and meaning is unconsciously dependent on the invisible processes of our bodies. The expectation that we’ll feel more or less as well today as we did yesterday contains thousands of smaller assumptions that allow us to make plans in a way most people take for granted. As a man afflicted with severe CFS for over 35 years described it: “I’m 60 now. I have nothing, I have no one. I have no memories; my life is unlived.”

So, as an ordinary and angsty 18-year-old American male preparing to leave home, I was suddenly denied the opportunity to become independent. I left school expecting to return in the spring, but never went back. What’s it like to wake up one day to discover that your body has become a barrier to everything you desire? The mind doesn’t know how to process it. At first I retreated into denial, telling myself that it would soon go away on its own.

But the initial shock and disbelief wore into fear and anger as the months went by and my symptoms didn’t improve—bone-deep fatigue inflamed by exertion; skull-searing migraines lasting entire days; brain fog that made it seem impossible to focus for an extended period of time; and some other weird things like brand new allergies (to my own cat) and facial paralysis. In a sense, I was lucky—unlike many people afflicted with CFS, I could still move around. But I was no longer able to do the things that comprised my life—going out with friends, schoolwork, working out. Even prolonged reading felt unmanageable. And when you can’t do the things you want to do, it’s hard to just relax and enjoy much of anything. So I just waited, endlessly, trying not to think about the future beyond the possibility of recovering, hoping for the best, my mind reeling in limbo. There was nothing in all of my experience as a modern person that prepared me for anything like it. This is something that happens to people? What a bizarre and anticlimactic tragedy. What was more crazy, however, was that nobody else had any idea what to do or think either.

The first handful of doctors I saw told me more or less the same thing—either I was depressed, or I was exaggerating, or they simply couldn’t help me, or some combination of the three. The first therapist I saw said (in our first and only session) something about how growing up is a struggle for everyone—which is true, I suppose. But it’s very unusual to be a young, otherwise normal and healthy person who is suddenly drained of physical or mental energy without warning. An infectious disease doctor announced with a weird and knowing smile, “You need to deal with your demons, Sam.” Huh!? What do “my demons” have to do with this, and what would this total stranger know about them anyway? I felt as though the world was conspiring to drive me insane. But I never doubted the reality of the illness, and I would have cut my arm off to recover. Sometimes you just have to let the world be crazy and do what you can to get through it.

However, we can’t live without other people, and the people in my life didn’t know what to make of me. I expected when my life was derailed that others would treat it as the emergency it was for me. But the world stops for no one, and healthy relationships can never be based on pity for long. To make matters worse, Chronic Fatigue Syndrome is much less relatable than other forms of suffering, disability, and illness. It just doesn’t look how it feels—it leaves a person as disabled as it is possible to be while still looking basically fine, and the emotional pain is hard for others to understand. It is sometimes called the “invisible illness” because it is so difficult to detect, but the experience of those who suffer from it is also invisible to those who don’t.

Aside from the vague knowledge that I was sick, my friends couldn’t understand what I was going through (bear in mind these were mostly teenagers). My girlfriend grew impatient with my bitter despair and, forgivably, broke things off. Even family members, who have perhaps the hardest lot of all watching someone they love suffer, developed a certain ambivalence toward me. Why doesn’t he just do what he can and move on? It was difficult even for me to maintain a sense of urgency about the situation because the experience itself was so boring and drawn out. I didn’t know, either, how to present myself to people. Should I act as dejected as I felt, or pretend to be okay to make things easier for everyone else? And if I seemed fine in one moment would people conclude that I’d been making the whole thing up? How could I explain myself to old friends and teachers I might run into? I almost wished I were dying of cancer or stuck in a wheelchair, just so people could comprehend the nature of my predicament.

Meanwhile, I was becoming an intolerable person to be around. I was caught between wanting sympathy for being ill and recognition for being strong—I wanted to be victim and victor at once. People generally resent the idea that another person’s suffering is somehow more grave or important than their own. And it usually isn’t—we all suffer and die and the problems we face in life are ultimately relative. Suffering is particular to the individual and can never really be quantified, measured, or compared. In some cases, however, the resentment of someone else’s complaints hides the guilty knowledge that maybe someone else really does have it worse than we do and that, in their place, we wouldn’t deal with it particularly well. We don’t generally like to be reminded of our fragility, and guilt is a difficult emotion to bear, so we’d rather rid ourselves of those who morally compromise us than feel guilt. Paradoxically, this only gives us one more reason to feel guilty. I, too, would feel guilty talking about my illness, as though I were burdening others. But I still resented the fact that they didn’t want to hear it. Within this ego-charged morality play of mutual guilt and resentment, relationships were strained and people simply moved on.

My life was falling to pieces. There was the illness and its symptoms—the pain and discomfort and disability from day-to-day and moment-to-moment. Then there was the existential crisis in the mind—the whole psychology that emerges from the contours of the experience. The invisibility of the pain, the sheer volume of time alone, the inability to relate the experience to others, the feeling of being judged for not being more capable, and, crucially, the absence of anything to look forward to in the future or of a usable past upon which to draw. It is common to hear people who have recently undergone a life-changing medical event say they can’t imagine a future for themselves. I had come to live out what psychologists studying the effects of unemployment have called a “provisional existence.” Without a larger purpose or goal or anything to work toward, my inner sense of time and self was stranded in perpetual anticipation.

Each day felt like an eternity, every moment an obstacle, but the weeks and months passed with a peculiar rapidity. And there was the added feeling of insult—this wasn’t just happening, it was happening to me. Watching other people get on with their lives and experience things I no longer could filled me with an overwhelming sense of cosmic injustice. What had I done to deserve this? Nothing at all.

I wasn’t simply in denial, I was unable to imagine how anyone could accept this. About a year in, my hopes were fading, and hope is a dangerous thing to lose. The prospect of recovery seemed increasingly dreamlike and remote. I felt like I was already dead, like a specter gazing back on a life that now seemed to belong to someone else. I missed my life so much I wanted to die. How easy it would be to just let go and permanently shut off the mind, with the additional satisfaction of raising a middle finger to everyone who misjudged me on the way out. I was thinking about suicide. I was scared. So I checked myself into a psychiatric facility.

II.

“There is only one really serious philosophical problem,” wrote Albert Camus, “and that is suicide.” Between 1999 and 2018, the suicide rate in the United States rocketed by 35 percent—in 2018 there were over 48,000 suicides and, relatedly, over 67,000 overdoses. This included an alarming spike among the young. It’s hard to imagine a worse sign of cultural and societal health than a desire among large numbers of young people to take their own lives. And while there is no shortage of commentary on the issue, the question of suicide only ever seems to be broached indirectly using other issues as proxies. If suicide is the only serious philosophical problem, it is a problem for which modern life hasn’t been able to provide much of an answer. And if good answers are not forthcoming, it means we are asking the wrong question.

The more meaningful question is not why people are committing suicide, but why they shouldn’t commit suicide—what makes modern life worth living? How can we tell someone contemplating suicide that life is worth living when our own reasons are not especially compelling. To pursue power or pleasure? To accumulate experience and cultivate a fleeting sense of self? A base impulse to survive? That human beings have lived through much worse conditions suggests that the recent rise in suicide may be related to an internal crisis of meaning. As Nietzsche put it, “He who has a why to live for can bear almost any how,” [italics in original] and with the decline of religion, the question of why has so far been met by modern societies with silence.

People commit suicide for all sorts of reasons, some of which are more understandable than others, but most of which seem to come down to a feeling of meaninglessness. If human life were simply a matter of pursuing pleasure and avoiding pain, it would be hard to explain why so many apparently “privileged” people commit suicide and so many underprivileged people do not. And since human beings generally experience and remember suffering more intensely than joy—what is known in psychology as negativity bias—there has to be something beyond pain and pleasure worth living for.

Indeed, there’s something paradoxical about the idea of suicide itself. As Camus wrote in The Rebel:

If the world is a matter of indifference to the man who commits suicide, it is because he has an idea of something that is not or could not be indifferent to him. He believes that he is destroying everything or taking everything with him; but from this act of self-destruction itself a value arises which, perhaps, might have made it worthwhile to live.

The energy that moves some people to suicide could be used to keep going. The problem is not that life is meaningless, but that life is meaningful but many of us are unable to access the personal and particular reasons why, either due to some unexpected misfortune or a general feeling of disenchantment. And it is the gap between the meaning we are capable of feeling and the absence of meaning we experience that tips people over the edge. Many lives have been lost to this unresolved paradox. Camus goes on to describe how suicide represents a kind of metaphysical rebellion against reality by which “man protests against his condition and against the whole of creation,” but in the very effort to rebel ultimately affirms life’s meaning. Otherwise, what would be the point of rebellion?

The appeal of suicide for me wasn’t simply a reaction to the conditions of my illness. It arose from the asymmetry between what I wanted and what I got, and the overwhelming sense of injustice. This produced a metaphysical revolt against the indifference and absurdity of the universe in a desperate clamor for meaning. If the desire to die comes from shattered expectations as much as from objective conditions, this has important implications for how we understand and deal with suicide in modern life. It might even contribute to a more humane culture in which we are more willing and able to identify with other people’s suffering, regardless of its severity, without taking it as a personal challenge.

III.

After checking into a psychiatric care facility via the ER of my local hospital, I spent nearly three weeks in a long hallway with my one-armed roommate (who had been, somewhat intentionally, hit by a train) and a dozen or more suicide cases. Here, I got to see what something resembling “the bottom” looked like. It is said that if we were shown the cards the people around us have been dealt in life, we would probably still choose our own. This experience taught me just how lucky I was when compared to the people there. It’s one thing to be told by someone who is perfectly healthy that others have it worse, but quite another to actually meet and interact with those people. There is something both terrifying and oddly comforting about the fact that human suffering is limitless.

The facility was largely composed of schizophrenics and manic depressives who’d stopped taking their medication and needed somewhere to restabilize. Many of them would never get better. My illness, on the other hand, was entirely physical and there was at least a slim chance of recovery. Except for the time a 300 pound man asked me to help him kill himself and then threatened to hurt me when I refused, it was a productive time and I even made some friends. If I could tell a girl with severe PTSD and a romantic relationship with a Dr. Who action figure that it was important to stay alive then, well, I’d be a hypocrite to entertain suicidal thoughts of my own. I remember her face brightening when I told her that all the terrible things she’d been through made her a stronger person and that simply enduring them was a remarkable human achievement. The experience put things in perspective.

In his memoir, Survival In Auschwitz, Primo Levi discusses the relativity of human suffering while describing his adjustment to the brutal conditions of life in a concentration camp:

Sooner or later in life everyone discovers that perfect happiness is unrealizable, but there are few who pause to consider the antithesis: that perfect unhappiness is equally unattainable. The obstacles preventing the realization of both these extreme states are of the same nature: they derive from our human condition which is opposed to everything infinite. Our ever-insufficient knowledge of the future opposes it: and this is called, in one instance, hope, and in the other, uncertainty of the following day. The certainty of death opposes it: for it places a limit on every joy, but also on every grief.

Another Holocaust survivor, the humanist psychologist Viktor Frankl, expressed a similar idea by comparing the human experience of suffering to the behavior of gas:

If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative. It also follows that the smallest trifling can cause the greatest of joys.

Sitting in that psychiatric facility, having sunk lower than I ever thought possible, forced me to accept reality and uncover the hidden possibilities within its limitations. There is no objective threshold that can tell us whether or not life is worth living. The human mind appreciates suffering and joy in relation to what we are used to (when we ask someone how they’re doing, we generally mean relative to their baseline rather than by some universal metric) and it’s amazing what the human being can tolerate when there’s no choice.

Life is lived from moment-to-moment, and I finally realized that I needed to find a way to accept each moment without comparing it to another in an alternate reality. An uplifting vision of the future can help maintain a feeling of tragic optimism through the really awful moments, whether or not that vision ultimately comes to pass. Human beings think in stories, and if I could squeeze something deep and real and human out of my experience that could bring me closer to the feeling of being alive, well, that would make a pretty good story. And if this suffering was meaningful, it seemed to follow that life itself must be meaningful. On the other hand, if the only point of getting better was to party and lift weights and make a living, life really had no purpose. I had found my why.

IV.

I left the psychiatric hospital and continued my previous summer job as a part-time stonemason’s assistant. I was physically frail and often had to go home early and miss days, but the work gave me something to do and helped me to feel like an adult. The people in my life who really cared about me showed it, and it dawned on me that other people generally do want to help but don’t always have the language for it. I started seeing a therapist who acknowledged the reality of my illness, and found an excellent doctor who specialized in virally induced chronic conditions. I began to journal, which meant teaching myself how to read again, except in a different, more methodical and repetitive way. And, having accepted the future of my health as unknown, my symptoms slowly began to improve—as though accepting things were a necessary part of changing them. The antiviral medication prescribed by my new doctor, along with some important lifestyle changes, sufficiently suppressed the virus and allowed my body to recover from chronic fatigue. Six months later and, beyond some lingering symptoms, I was almost fully functional again. It felt like a second chance.

It turned out, however, that this was just a trial run for what was to come. When a person suffers over an extended period of time, it becomes hard to see themselves outside of the situation. But when some degree of relief is finally achieved, the opposite problem occurs: We forget what it was like to live within that suffering, and we forget the promises we made to ourselves about what we would do when it was over. Before, freedom was conceived in negative terms—freedom from pain, from disability, from disease, rather than freedom to take a particular action. We imagine that freedom from suffering will answer any questions about what to do when we’re finally free.

But positive and negative freedom are different. As Primo Levi put it, “Necessity simplifies.” The immediacy of suffering and deprivation keeps the mind from worrying about much else. Levi described how, when the concentration camps were finally liberated, it was experienced by prisoners without any of the expected happiness and more than a little ambivalence. “Just as they felt they were again becoming men, that is responsible, the sorrows of men returned.” Similarly, the black American writer Shelby Steele describes “the shock of freedom” experienced by previously oppressed groups when legal equality is achieved and the expectations of economic competition bear the sting of humiliation. With greater freedom comes the burden of responsibility.

In a sense, my illness spared me all the things I would have been compelled to otherwise face. When I started to recover, the pressures of being in the world returned. I didn’t want to rush back to school right away, and I lost patience with my job as other possibilities opened up. So I left the stonemasonry gig and moved to New York City to pursue a career teaching, training, and competing in mixed martial arts—a childhood dream I’d never dared to pursue.

After a couple months of daily MMA training in Manhattan, however, I sustained a serious back injury, breaking a rib and snapping a ligament, and relapsed into CFS on the road to recovery. I wasn’t ready to go home, though, so I stayed in the city and found a job working behind a bar in the East Village, wandering the city and journaling in my spare time. This is just another leg of the journey, I kept telling myself, just another part of the story. But then I developed a chronic sinus infection from walking about in the winter with a broken immune system, and suffered another CFS relapse. It was time to go home and regroup. Within a few weeks of returning home, I found a deer tick on my arm and a couple of weeks later I developed symptoms of Lyme Disease. The Lyme symptoms briefly subsided after a round of antibiotics before returning and persisting: this too had become chronic.

Within a few months, I felt like my nervous system had retreated into fight-or-flight mode, and my heartbeat was constantly racing. I could no longer get good sleep, the antiviral medication stopped working, and I stopped recovering. In the intervening years, each issue has exacerbated the others and created a vicious cycle. Then, six months ago, cumulative damage to my vagus nerve—which runs from the brainstem throughout the torso and controls rest and digestion—caused something called gastroparesis. My stomach muscles no longer contracted normally because the signals weren’t getting through. I could no longer eat solid food without feeling nauseous, and took to drinking all my meals. I’m almost six feet tall, and since the last time I was healthy, I’ve lost nearly 50 pounds, down from about 170 to around 125. Even in my dreams I’m sick (although I still dream about food).

On one hand, I am suffering overwhelming physical and cognitive exhaustion from CFS, and on the other, I experience deep bodily stress from a fried nervous system. It’s like being tired and restless at the same time—like my body is pulling in two completely different directions without regard for the total organism.

I’m 27 now and I live in a room in the house I grew up in. Most of my time is spent reading and trying to write when I’m not completely debilitated. I’ve tried dozens of treatments, from long-term antivirals and antibiotics to meditation and breathing exercises to herbs and environmental mold protocols and even something called bee venom therapy. Although CFS sufferers have attained more credibility since I first fell ill, many doctors remain suspicious of its reality and the same condescensions and doubts ensue whenever I try out a new doctor. The world is still not yet ready to acknowledge diseases like mine. It’s something to live with, for now. But what, then, is there to live for?

V.

In his 1946 classic Man’s Search for Meaning, Viktor Frankl explored the meaning of human suffering through his experiences in the concentration camps of Auschwitz and Dachau. The temptation of suicide was everywhere and it was an hourly struggle just to hold onto any semblance of individual humanity without dissolving into a primitive state of survival. Preventing another prisoner’s suicide attempt was strictly forbidden, and what was referred to as “give-up-itis” became a common occurrence in the camp—one morning, an inmate would refuse to get out of bed and reach into their pocket for a last cigarette. “At that moment we knew that for the next forty-eight hours or so we would watch them dying.”

It’s hard to imagine circumstances in which the range of human possibility could be any thinner or the determining forces of the environment more powerful. Yet, it was here, in the very mouth of hell, that Frankl found a sliver of human freedom with which to take responsibility for one’s life—an inner decision that could make the difference between life and death. It wasn’t necessarily the toughest and strongest prisoners who were best able to endure life in the camp, but often the more sensitive ones with a sense of humour and a rich inner life who had something to live for beyond the immediate struggle for survival. Contra Freud, the brutal conditions didn’t shrink individual differences down to instinctual drives in the face of bodily want and need, but widened them.

We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken away from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way. … It is this spiritual freedom—which cannot be taken away—that makes life meaningful and purposeful.

This is not, Frankl clarified, freedom from outside conditions but the freedom to choose our attitude toward those conditions. “As a professor in two fields, neurology and psychiatry, I am fully aware of the extent to which man is subject to biological, psychological and sociological conditions,” he explained. “But in addition to being a professor in two fields I am a survivor of four camps—concentration camps that is—and as such I also bear witness to the unexpected extent to which man is capable of defying and braving even the worst conditions.” While group outcomes can be reasonably well predicted by statistical patterns, the individual personality remains elusive.

To keep himself and his friends alive, Frankl came up with various ways to withstand the suffering of the moment by forming a sense of the future that gave the present a larger meaning unique to the individual—a work to complete, an experience to have or someone to love. Absent any other options, there was always the underlying human capacity to transcend our condition by accepting our fate despite the inevitable suffering. “We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected of life, but what life expected from us. … Every situation is distinguished by its uniqueness, and there is always only one right answer to the problem posed by the situation at hand.” [Italics in original.]

Frankl was identified on his first day in the camp as the only person in his block unlikely to survive, but he warded off cardiovascular collapse by imagining a thesis he wanted to write on the psychology of the concentration camp. This ultimately culminated in Man’s Search for Meaning and his life’s work of developing a humanist psychiatry. “All that oppressed me at that moment became objective, seen and described from the remote viewpoint of science,” he recalls. “By this method I succeeded somehow in rising above the situation, above the sufferings of the moment, and I observed them as though they were already of the past.” Paraphrasing Spinoza, he says that “emotion, which is suffering, ceases to be suffering as soon as we form a clear and precise picture of it,” or, in other words, the moment it finds a meaning.

On another occasion, Frankl found solace in the image of his wife, who, unbeknownst to him, was already dead. “I understood how a man who has nothing left in this world still may know bliss, if only for a brief moment, in the contemplation of his beloved,” he wrote. “Love goes far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is still alive at all, somehow ceases to matter.” At other times, a sense of humor provided a wider perspective. But even without something or someone awaiting them in future, in the face of unavoidable suffering, tragedy, and death, there is still the potential to experience meaning by submitting to, and thus overcoming, reality. Frankl recalled a woman who was cheerful in spite of her impending death and underwent a moral change at the very end of her life. “In my former life I was spoiled and did not take spiritual accomplishments seriously,” she told him. “I am grateful that fate has hit me so hard.”

These and other experiences would eventually form the backdrop of Frankl’s own school of psychotherapy—logotherapy, taken from the Greek word for “meaning”—which holds that it is the search for meaning that ultimately makes us human. It is more profound than the will to pleasure or power—meaning kept the prisoners alive under the brutal conditions of the camp but pleasure and power were ultimately fleeting. There are three ways to find meaning in, or in spite of, suffering: 1. By creating a work or doing a deed. 2. By encountering someone or experiencing something, such as culture, nature, and art. 3. By the attitude we take toward tragedy.

Unlike other forms of therapy, which tend to view mental health as a function of equilibrium, and suffering as an outcome of neurosis or trauma, logotherapy is based on the idea that mental health is characterized by a degree of tension between present and future—a push-and-pull between what one is and what one is to become. It understands suffering not as something pathological but as a sign of our fundamental humanity while individual development comes from the negotiation and navigation of the realities we experience. Logotherapy doesn’t see the person as a “closed system,” but as intrinsically intertwined with the world and other people in ways that often call for particular forms of action.

What is demanded of us is not to bear the meaninglessness of life, but “to bear our incapacity to grasp its unconditional meaningfulness in rational terms.” Individual meaning comes from assuming responsibility. “Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked,” Frankl wrote. “Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”

The thrust of Frankl’s approach is to live as if you were living already for the second time and as if you had acted the first time as wrongly as you are about to act now. “It seems to me that there is nothing which would stimulate a man’s sense of responsibleness more than this maxim, which invites him to imagine first that the present is past and, second, that the past may yet be changed and amended. Such a precept confronts him with life’s finiteness as well as the finality of what he makes out of both his life and himself.” [Italics in original.] Likewise, this relationship to time can give deeper meaning to our past, all the moments of our lives, in which “nothing is irretrievably lost and everything irrevocably stored. … I should say, having been is the surest kind of being.” [Italics in original.] With hope for the future and fond memories of the past, the suffering of the present becomes less all-encompassing, time can again flow and new memories can be made.

Finally, suffering itself must have meaning, because life is meaningful and suffering is part of life. The question for others in the camp was “Will we survive? For, if not, all this suffering has no meaning.” But the question which beset Frankl was: “Has all this suffering, this dying around us, a meaning? For, if not, then ultimately there is no meaning to survival.” Frankl articulated a spirit of “tragic optimism” that says yes to life in spite of the tragic triad of suffering, guilt, and death. Using suffering as an opportunity for personal and spiritual growth, using guilt to take more responsibility for our lives, and using the fact of death to make life more real.

Without tragedy, life would be meaningless, for tragedy is but one element of the total process of life that involves both suffering and joy. And while people will try to avoid unnecessary suffering wherever possible, it remains possible to live meaningfully in the face of unavoidable suffering. The meaning of suffering is to become more conscious of what it means to be human.

VI.

I don’t want to make it sound as though I’ve somehow overcome the universal philosophical dilemma of pain. The temptation of suicide still comes to me, especially when my suffering is acute. I don’t know what will become of me, but that’s exactly the point. The best case against suicide is that none of us know the future and it is not unheard of for really bad things to turn into really good things on a long enough timescale. Maybe getting sick was the best thing that could’ve possibly happened, but I’ll never know unless I live long enough to find out.

Whatever happens, human life can’t be qualified by totting up our suffering and joy because we don’t know exactly how suffering and joy are related. It could be that, to quote the Lebanese poet Khalil Gibran, “the deeper that sorrow carves into your being, the more joy you can contain.” Sometimes I’m overwhelmed by intense feelings of joy and gratitude for simply being a part of this life—that I still get to experience anything at all. In those moments, my past is endowed with meaning and my suffering makes more sense.

But there’s no need to romanticize suffering to recognize the moral opportunities it can provide. I almost certainly would not be writing like I am if it wasn’t for this illness, and while I still sometimes feel like the scared teenager robbed of his future, I doubt he would ever have believed the things he would be able to do and enjoy even as his illness worsened. I still believe I’m going to get better—processes that are set in motion can usually be reversed. But it’s not the only thing that matters to me now. And if I were to recover, my new life would present its own set of challenges.

The key, I think, is to realize that, no matter what happens, you are still part of this world. I try to find a balance between living in the present and living for the future, between an acceptance and rejection of life as it is. I would like to live in such a way that, if I could talk to my 18-year-old self now, I would know exactly what to say to him. I’m not afraid of dying; I’m afraid of being unworthy of my suffering.