Enter Label: drawing comparison to severe mental illness

and Best Minds, the surprising book that anyone with Long Covid should be reading right now

alone in the Healingvrse, a year and a half ago

Dear Companions,

I never would have thought to compare my two-and-a-half-year journey of chronic pain from Long Covid to that of a person with schizophrenia but then I read and posted about New York Times Bestseller "Best Minds: A Story of Friendship, Madness, and the Tragedy of Good Intentions,” a book about not only the illness, but the way in which American society has evolved to handle its sick people. Yes, the diseases are entirely different, with one still hardly recognized by the medical establishment, but they both can leave the sufferer isolated, falling through the cracks of a society that values productivity and intelligence.

"Best Minds" tells the story of two intimately connected friends, Jonathan and Michael, who grow up in New Rochelle and go to Yale. Jonathan pens the book, centered around Michael's struggle with schizophrenia, which manifests in his mid-20s. The beginning of their lives is a beautiful story of triumph—American-born sons in a sprawling suburb of Holocaust survivors who grew up with living rooms with so many books they could be called libraries.

Michael, in Jonathan’s chronicle, excels in every facet—the school newspaper, elite summer programs, Yale undergraduate, and at Bain and Company at the height of the finance bonanza of the 80s. However, Michael experiences a significant mental breakdown ending in an eight-month stay at an institution at the age of 25. Afterward Michael transitions to a halfway house, where limited job prospects like working at the register at Macy’s essentially force him to pursue the more respectable path—a deferred dream of attending Yale Law School. The question later becomes: was that a smart choice?

Incredibly, Michael manages the rigors of law school due to his outsized brains and the legendary help of his professors and fellow students, like another famous lawyer with the same disorder, Elyn Sacks, who also penned the autobiography, The Center Cannot Hold, A Journey through Madness, about her experiences with schizophrenia. Except Elyn currently holds a professorship at UCLA, and Michael is currently housed in an institution.

Despite his outstanding intelligence, which attracts extraordinary opportunities such as a $2.1 million Hollywood and book contract, Michael's presumed failure to adhere to his medication regimen, and the absence of a proper support system to monitor his increasingly withdrawn behavior, leads to worsening delusions after leaving Yale. Tragically, this culminates in him murdering his 37-year-old fiancée, who is also pregnant with their first child.

Incidentally, his book deal was cancelled, but Ron Howard went on to make the Academy Award Winning Beautiful Minds with a similar premise. The story of super intelligence and schizophrenia needed to be told—just one that ended nicely.

Now, let me be clear: I understand that having a post-viral condition is quite dissimilar to schizophrenia; I don’t have the murderous desires. I don’t suffer delusions or have problems distinguishing real from imaginary. I don’t need someone to assure me that the room is not on fire.

Unlike Michael whose illness attacked his extraordinary intelligence, mine came to squelch my tenacity, a quality I dug up in the second grade when I asked to skip to the third, and much to my surprise, was granted that wish the following day. That is the first move, in a string of many over the course of three decades, which earned me the nickname “crazy” wherever I went.

But, like Michael, I might need days to recover from a social event or interaction. I too can only give 60-70% of myself to any situation, which is a significant improvement from 5% last year. When Michael describes feeling like he's speaking from inside the dragon about his illness, I'm reminded of my own expression. I call it the Zen Master with a Whip. It refers to the pain that forces me to operate within certain autonomic parameters—always careful, always tiding the line, always drawing myself in between. While it’s helped me find new kinds of peace, I still find that it insidiously operates in opposition to my nature. While I’m competent to stand trial there are many aspects of Michael’s life that I could not handle right now, and that’s just the sad truth of it.

But perhaps above all, our conditions pushed us to think about the role of community a lot.

In a larger context, Michael’s story picks up where Mad Men left off, portraying an American society that, in the 1970s nosedives into the symbolic era, postmodernism. This era sees an accompanying rise in deinstitutionalization, releasing many mentally ill individuals from the institutional medical system by, often times, “well intentioned” progressives, influenced by culture and legislation, who often believe that the label of mental illness is worse than the disease. However, the communities that are meant to fill in the gap, are severely unprepared, or simply aren’t there at all, leaving many to pick up their Medicaid checks, and summarily fall through the cracks.

During his time at Yale Law School, Michael is kept afloat with the support he receives flowing up to the Dean of the Law school, the famous Italian born Guido Calabresi. Despite being unable to hold down a proper law firm summer associate position, Michael gets a post doctorate position extending the lifeline. Then, Michael speaks highly of the communitarian world at Yale with its “nurturing inclusiveness.” But the reality is that Yale Law School is a transient community for Michael, and not a true, nor enduring HEALINGVRSE. There is a currency there: intellect. Without which you cannot be there.

Due to the bloody outcome of the situation, Best Minds often questions why individuals find medical support within the criminal system that could have prevented their entry into it. It is only when Michael needs to stand trial before Judge Pirro for murder that he receives the medication that would make him fit to stand before her. For those who suffer but never commit a crime, what breakers are in place to ensure things do not go deeply awry?

The comparison to what I have witnessed in the HEALINGVRSE is uncanny. Not because I can relate to the criminal end of the story. I never had the desire to cause harm to anyone else, but self-harm during the acute phase is something entirely common in the course of my particular illness. As for productivity, I was of less use to the world than Michael even in deep throws of hallucination. Except that I had a baby who needed me to be alive, and that, I believe, was one of the big factors for why I did not fall further behind into nowhere. People simply had to pay attention consistently because there was a baby for whom I could not care for. But what about those suffering without that?

And having children alone does not prove sufficient either. In 1982, Rebecca Smith, a schizophrenic, a mother to a baby girl, died on the streets of New York from hypothermia in a makeshift cardboard hut on 10th Avenue. Articles described her fate as the problem of living for the mentally ill. How many people have I come into contact within the world of Long Covid, who are on the verge of losing their homes, their jobs, their families, due to their symptoms? Innumerable. They too have this problem of living. Doctors rarely believe them and their scores of symptoms, never mind receiving a disability check. Women of childbearing age especially are dismissed as depressed or suffering from postpartum.

If you have the misfortune to stop functioning adequately in this society, you will find there is very little to connect to. Even if you have a family that supports you, you are not guaranteed an empathetic ear. The shoulders to cry on are always pretty busy, especially if they have to pick up your slack. Empathy requires understanding, and as far as mystery illnesses go that’s, by definition, not going to be in rich supply.

Society often lacks empathy for issues it fails to understand, especially those of chronic nature. As problems escalate in magnitude—such as a pandemic resulting in the deaths of 1.3 million people (28 million globally) and 10% experiencing long-term symptoms—there's a tendency for widespread denial to take hold. If you're falling through the cracks of a society that emphasizes productivity and intelligence, you're lucky if you find yourself in a wedge where there are funds for your dysfunction, and possible recovery.

In Best Minds, Michael speaks about the “failure of capitalist culture” to foster mutual commitments outside of competition and “the pitfalls of exaggerated focus on the individual who could no longer withstand the forces of industrial society.” But it goes beyond that. It’s a human failure that seeks rectifying.

During many of my rock-bottom moments, I begged my family to please send me somewhere, anywhere, because I could not bear my reality. But there’s no institution for pain, for simply falling apart. Time and again I found there was absolutely nowhere to go. I considered doing a 5-day infusion designed for migraines in a hospital simply to vacate my reality—a place where people were required to take care of me, required to ask me how my pain was, required to love me for as long as insurance mandated it, but the side effects of the particular medication that I would have to take to be admitted terrified me (e.g., strokes). A friend of mine on Reddit with similar pain took that route. He wrote me from his hospital bed saying how the medication felt more painful than a giant boulder compressing his chest. He also told me he was worried his wife would just see it as a way to get a vacation.

After some time of incessantly pinging my group chat begging for someone to deliver me an option, it became pretty clear that I was expected to figure out this problem for myself even though I could barely handle walking to the kitchen on my own. My dad kept suggesting for me to go to India, which was a sweet thought, but not quite attune to the fact that I could barely handle talking to a receptionist. Going two blocks to the pharmacy was the equivalent of a trip to India by all measures of my heart rate. And I had a child who, as is, barely saw me. For viable places to go domestically, the only options appeared to be expensive spas tailored to corporate retreats or expensive functional medical retreats. I couldn’t handle all those treatments baked into a short time frame anyway, so going would have been a colossal waste of money.

Even if I found a fitting place, which, I repeat, did not exist, I could not get on a plane. I can understand how a supremely high functioning schizophrenic with Yale Law School level intelligence can fall through the cracks. There is simply too much promise that everybody hangs on to, and as long as there is no immediate threat of death, the rest is immaterial. Plus, where else can you go?

I can remember stepping out on the balcony with my dad in the sweltering summer heat, my only outdoor excursion for weeks, my only visitor too, and breathing in the stillness of the cityscape. We discussed the HEALINGVRSE, but it had no name yet, with a central question: should people with disabilities be accommodated in the world, by creating their own communities, or should they be placed in the world and assimilated for the betterment of their condition. It’s a complicated question, and while society has generally chosen the latter, I understand the question now to be vastly more complex and nuanced.

The HEALINGVRSE needs to be a place online and offline. It needs to be a place that is transmutable, altering to fit different points in a person’s journey. It needs to recognize that progress isn’t linear. It’s pathway that resembles Chutes and Ladders, allowing for ups and downs but always veering toward something higher.

The HEALINGVRSE isn’t just about throwing people at the problem, because being alone is a very real part of recovery too, especially if the problem is exacerbated with overstimulation. But that does not mean that someone should spend weeks crying alone either. It should help the surrounding people too, helping them understand how to react even in the face of being repeatedly rejected, respecting the sacrosanct need to share bad feelings where necessary.

It needs to account for mental and physical deficiencies, including invisible illnesses and those perceived as imagined by the media and medical establishment. It should recognize the value of the spiritual journey for those suffering, even if their productivity is diminished. It should offer accessible pathways for sourcing treatments, encompassing both mainstream and alternative options, to empower individuals with choices. It should serve as a space for sharing music, literature, and knowledge that nourish the soul. Yes, in the HEALINGVRSE, it’s the soul’s time to shine.

While this heaven on earth has not fully materialized, its elements are scattered across various spaces. Michael found support through an ad hoc Yale Law system, while I found it online. Even during hot summer days when everyone else was away, I never let myself go through the final last crack alone. I joined online groups, often listening to live classes or coaching sessions with the screen turned off, letting the sound of someone's voice pour into my room. Maintaining a schedule was crucial; I treated these online engagements as real appointments. For instance, at 1pm, I'd tune in to a health coach who had healed her own chronic back pain. At 3pm, I’d join breathwork. At 9pm, it might be Michael Shkreli streaming for hours, playing chess and discussing biotech stocks. At midnight, I would fall asleep listening to Twitter Spaces discussing topics ranging from Ukraine, SBF, to AI. During particularly difficult times, I reached out to suicide hotlines. I reached out to old acquaintances who then became strangely intimate friends. And then, of course, there was "Away Messages," my tepid weekly battle cry, which I forced myself to start in the worst depths of my sadness so that I could build this relationship with you.

This isn't to say that people in the physical world did not form my HEALINGVRSE too. My baby’s kisses kept me going so many times, but I struggled to care for her, and the guilt drove me insane at times. My husband took on all motherly duties without ever suggesting he might leave, but we had many fights. My parents helped with my daughter, allowing me to rest, a crucial element in my healing journey, but often appeared reluctant to engage in deeper conversations about my situation. Faithful friends checked in on me without expecting anything in return, but we often struggled to express love for one another without being able to hang out. My sister came around once a month, the scent of her jacket brought all of the outside world into my room, but coordinating between her busy plans my unrelenting pain was challenging. All these efforts deserve acknowledgment and appreciation, but there was a sea of time in which I felt totally alone. Sometimes forsaken.

Often the physical contact that sustained me was a self-assembled line of body workers, rolfers, functional doctors, physical therapists, acupuncturists, neurologists, and healers who all became my therapists as I cried on their foldable beds, while also discussing observations in the HEALINGVRSE. Their support was invaluable, though it was ironic that I, or insurance invisibly, had to pay for it.

I was in a very privileged position yet barely staying above the line of life. I think we can do so much more for people. The internet can facilitate the HEALINGVRSE in a way that experiencing this in the 90’s or earlier could not. I want to expand on that. The amount of suffering and loneliness we endure, we should not have to, simply because we are not well. Just because we cannot engage with society in the traditional format does not mean we must feel ourselves disappear entirely. Just because our illness is a mystery, doesn’t mean we have to take the journey alone. Just because the spiritual changes occur deeply on the inside, does not mean that we can’t showcase them.

In a post pandemic world, we have become empowered to find own paths in wellness and are going farther, deeper. Perhaps it’s time that we create the supply for a market that has so much demand.

With much love from the HEALINGVRSE,

Rebecca