Mitch's Twitches: Another Birthday Reveal

Two years ago on my birthday I came out as a liar.

I thought it might help me be more honest. I assumed if I made a public proclamation of my commitment to truth, I might be more likely to follow through.

It seems to have “moved the needle,” as we say in corporate, but not as much as I had hoped. I’m still more diplomatic than I want to be. I still withhold things I’m afraid might negatively impact you, taint your view of me or jeopardize our relationship.

The context I didn’t reveal at the time of my disclosure is I had just gone through probably the first true mental-breakdown of my life. A week of nearly non-stop tears, followed by months of debilitating anxiety. I was certain that I was dying. Not in the standard “we’re all going to die” way I’ve come to know, love and hate, but in the “oh shit, I think I’m about to have a premature ending” kind of way.

Probably 13 years ago I first noticed that I was having hundreds, maybe thousands of micro-twitches on my legs and feet every minute. Obviously, I googled it and found that this can be a symptom of ALS. And with that, I performed another of my fantastic WebMD-inspired self-diagnoses.

This is what my legs and feet are doing at any given moment.

For those less familiar, ALS or Amyotrophic lateral sclerosis, is a neurodegenerative disease in which one slowly loses control of all voluntary muscles until one can no longer eat, speak, move or breathe. Most cases have no known cause and there is no cure.

I saw a neurologist at the time who did some nerve tests and diagnosed it as Benign Fasciculation Syndrome which roughly translates to “we don’t know bro, you got twitches and they’re probably harmless.”

He encouraged me to get another test done in a couple of years to confirm there weren’t any signs of nerve degeneration, which I did and the coast seemed to be clear. Temporal relief!

Fast forward to March of 2022. At the end of a lovely walk with my friend Nate Dern (yes, that’s a name drop) I noticed I could no longer move my right hand. Much as I tried, my fingers wouldn’t budge. I panicked, then assured myself it was fine…and then set an appointment with a neurologist. Within an hour, I had regained function, but the spark of fear had already turned into a wildfire.

I soon had a barely-satisfactory Zoom appointment, but the wait to get an EMG test to make sure everything was functioning properly was going to take 6 weeks.

I then flew to NYC to visit Lauren who was performing in “Harry Potter and The Cursed Child” on Broadway. (yes, that’s a wife brag). About 48 hours after I arrived I completely succumbed to the thought that I was waiting to be given a terminal diagnosis.

I wept and wept. I seemed to enter a state of pre-grieving. Faced with the potential that it was all quickly going to come to a crushing end, I became painfully aware of everything I longed to do, be, see, feel and experience.

Previously unconscious expectations came to mind. The devastation that I would not get to watch all my official and unofficial nieces and nephews grow up. The horror that I had wasted so much of my life doing shit that didn’t matter. And most of all, the brutal heartbreak that I would miss out on the rest of my life with Lauren.

It was a surreal and visceral experience and I couldn’t sleep, which only magnified the dis-ease. Meanwhile, my beloved wife was holding down what she felt in her bones was the truth: that I was not suffering from a terminal illness.

On the one hand, it was comforting that she was so adamant, and some part of me deeply wanted to believe her, but I was still facing down a fear so strong it felt like intuition. The idea had gripped me so deeply that I couldn’t stop googling information about ALS.

I was reading about case studies and various experimental treatments, homeopathic remedies, people who had - against western medicine’s predictions - survived for decades with the disease, some even regaining various levels of motor function.

On the other hand, this immovable faith Lauren stood firm in caused its own relational conflict. I felt some part of my experience was being denied or at least not accepted. While she felt it was unwise to entertain possible outcomes until we had proof. We ran into this rub on many occasions over the course of a couple of months.

Lauren and I in Central Park in the midst of my breakdown. I remember almost everything I saw brought on more tears. The love emanating from every person walking a dog was so overwhelmingly beautiful I kept falling apart.

Despite Lauren’s pleas, I couldn’t stop reading. I was preparing. I didn’t want to be caught off guard and I wanted to make use of my body functioning as long as I could. I read about people who have their voice “banked” so that once they lose the ability to speak, they can direct a computer with their eyes to speak using a digital vocal recreation. I ordered an insane number of vitamins and supplements that people fighting the disease recommended.

One night in the peak of the pain and terror I was facing, I kneeled at the bed of a random long-term midtown hotel room Lauren was being put up in and prayed. It was the first time I’d done that since I was a child. I prayed to…I don’t know what exactly. Forces beyond myself. That which is beyond knowing. I cried and begged and bargained.

It was like “A Christmas Carol,” having seen what I’d seen, I promised “the universe” that with more time I would do better. I would show up for my life. I would live in integrity. I would be honest even when it pained me or undermined my self-interest.

In this act I found myself deeply humbled and feeling instant compassion for everyone coming face to face with their mortality. It is a soul-trembling experience, no matter how “real” the threat may be at the moment.

A friend offered the following take, which feels absolutely true in my experience: “Hell is realizing and recognizing love as the ultimate act only as we are dying, because just as we see it, we can no longer participate.”

I think this hellstate is felt any time something has come to an end and we know we didn’t give everything of ourselves or appreciate it as deeply as we could have while it existed. Could be a relationship, a project, a vacation, a job…anything we take part in.

One thing that became blazingly apparent in this awareness was how much I wanted to be alive. There was a significant and overwhelming desire to be here, in this body, healthy. So much so that I found myself willing to try things beyond my default mostly-materialist worldview. I refound the work of Louise Hay that I’d initially run into in my early 20’s while exploring the work of Wayne Dyer.

Curious about what had inspired her to live and write about the things she did, I traced her roots to Christian Science. I read Science and Health by Mary Eddy Baker which I found to be a practical guide to the scriptures I’d never felt pulled to read before. The entire movement is dedicated to healing in ways I hadn’t previously been aware of and I found it quite beautiful.

I went to Christian Science services in New York City. Part of me felt shame, embarrassment, particularly at the idea of friends being aware of my exploring in this way. Both because I felt a previously unknown level of insecurity and vulnerability which the ego HATED, and also because I know how religious-minded folks are generally regarded in the more liberal circles I swim in. I imagined I would be judged, lose credibility and ultimately access to certain social groups.

A dear friend and lunatic who had taken the Eastern Orthodox offramp of the psychedelic super highway of self-inquiry encouraged me to attend a service. On a quiet mid-week evening I walked into St. George’s Greek Orthodox Church on 54th street in Midtown Manhattan. A young man who was dressed as one of the officials kindly approached me and invited me to partake in the service. He sang and chanted in Greek as per the script and he pointed to the page when it was my turn to read the English portion.

The inside of the church I wandered into seeking…well, salvation.

I felt wildly uncomfortable. I have never felt comfortable in religious settings, always a sense of not belonging, a fear of doing something “wrong” and more than anything else - an intense apprehension about submitting to systems of controlled belief.

But as I looked out at this small congregation, I felt love and care. The church was mostly empty, no more than two dozen mostly older people showed for the evening service happening during lent. I imagined them swinging by after work on their way home to tend to children.

In a cracked open state, my habitual way of relating to people who regularly attend church services was interrupted. I saw these people not as Knowing, but as attending church specifically because they did not know. I was certainly projecting, but it had me aware of the innate humility involved in attending services of any kind. It is an embodied act that says, “I am in need of support beyond which I can provide myself.”

From this perspective, the act of NOT attending any kind of service can be seen as a wild act of hubris. It is overly simplified, but in that moment I saw the choice to forsake this kind of communal activity as a huge misstep. Not that we all must attend a particular church’s services, but that by not doing so, our mostly egoic way of navigating life doesn’t get interrupted by consciously partaking in an act of interdependence.

Here I started to feel newly aware of the power of ritual to induce alternate states of consciousness. (It feels embarrassingly obvious now, but at the time it was mildly revelatory). Whereas I had predominantly used psychedelics and vipassana (rituals in their own right), I could see people using religious services to invoke compassion, humility, acceptance and wisdom. I felt grateful for my newfound willingness to step into contexts I would never have otherwise felt motivated to explore, thanks to this confrontation with myself.

Among the many unexpected positives of this health scare was a potent and emotional conversation with my father, whom I have had a strained relationship with over the past many years. I cried and thanked him for everything he had offered me and acknowledged that while I had often doubted it, I could say in facing the prospect of “the end,” that all of the suffering had in fact been worth it.

After our call he sent me photos of myself over the years and I wept again. I saw myself in a new light, I felt so much love for this guy who had spent so much time struggling. So much time wishing I were different than I am. I was kicking myself for not fully enjoying so many of the good times I’d experienced. For not soaking up how fucking awesome I was. Nevermind the fact that I don’t look like Chris Hemsworth.

Just in case you were curious, I used AI to combine my face with Chris Hemsworth’s face. Splitting the difference here evidently doesn’t work for anybody.

There were other wild psychological happenings unfolding too. I noticed how quickly the mind sought deeper meanings and silver linings.

Having spent some time with Buddhism, there was something that “made sense” about ALS. It seemed like it could be an incredible tool to lose the habitual identification with the body. To have full consciousness of the loss of control of all physical function certainly seemed hellish, but it also seemed like a profound opportunity to realize anatta - one of the three marks of existence, stating that there is no self or lasting essence to anything that exists. From this view, I could see a path to acceptance of something every ounce of me was resisting.

Similarly, I saw potential freedom. I imagined a diagnosis like this bought an INSANE amount of social spaciousness. I imagined it would free me from the need to be seen in any particular way and the needs of others for me to behave a particular way. It’s like a platinum version of the cancer card. Nobody tells someone with this kind of horrendous terminal illness that they’re being uncouth. Or I’d like to see them try!

I also thought of the way people describe being around those who are dying as being quite potent, as death seems to bring about a deeper cut of honesty. And that genuinely seemed liberating to me.

Thinking on it now, it’s quite sad to imagine it’s only in facing death that certain truths are likely to be named. And yet there seems to be some truth to that. I can say that even the potential diagnosis brought about more honest conversations in several of my friendships.

I also must confess that a part of me felt relief. The immense fear of death I have had ever since I can remember would finally be faced. I imagined I might feel something like the lyrics of Peggy Lee’s song “Is That All There Is?” describe. And that the suffering inherent in existing would be over. Even if reincarnation is real, I imagined there would at least be a moment of unparalleled peace.

Over the following nine months, I went to countless doctor’s appointments. I saw holistic and alternative healing practitioners. I developed a tick in which I was constantly testing my motor skills by tapping each of my fingers against the tip of my thumb over and over to ensure I hadn’t lost function. I received various IV’s and even went through an expensive process known as “Ozone Dialysis” in which a third of one’s blood is infused with ozone.

After 9 months I again went in for an EMG to see if there was any sign of nerve degeneration and two separate neurologists confirmed there was none and that they felt confident I was not suffering from ALS.

Sweet relief. At long last I was given the clearance I had prayed for.

Me at Clusterfest 2019 embodying my favorite emoji, thematically relevant.

Perhaps you’re wondering if I have since become a “man of God,” if my identity is now that of a Sunday church-goer and I will be spending the rest of my days proselytizing. Worried that the next time you see me, I’ll have converted to a belief system that creates so much distance between your world and mine that relating seems impossible. Or maybe you’re imagining the opposite. Maybe you’re thinking, “at long last, Mitch has seen the light! We can finally connect!”

It’s not quite that. I have not outsourced my meaning-making to any particular religious movement. Though I am more open to what may be pointed at via systems I’d previously been closed off to.

I do find myself once again bewildered by the power of the mind. The renewed appreciation for its potency is well-captured in the song “Mind Tricks” by Bassnectar.

I do not think that I was offered a miracle, only great fortune…but maybe there isn’t much difference between the two.

One of the “gifts” of the prospect of having a terminal diagnosis was that I imagined having a deadline might actually be enough to push me through the block of infinite procrastination. The number of creative impulses that came online was impressive. So many jokes were coming to mind I imagined I would write an entire hour long set I would do as long as I was able.

I was certain that if I were diagnosed I would start a podcast called “Many Last Words” in which the premise would be: a guest and I would speak to each other as though it were our final conversation. Allowing what must be said to be shared as if it were our last chance to do so. The truth is, I have always wanted to be in that kind of communication. Some part of me has ached for what is pointed to in these lines of St. Francis of Assisi’s poem “Of Course I am Jealous” since the first time I read it nearly 20 years ago…

"Tell me about your heart," my every word says.

Speak to me as if we both lay wounded

in a field and are gazing

in wonder

as our spirits rise.

…And what is it like now to have revealed this to you? Embarrassing. There is fear. Fear that I have undermined my reliability, by revealing the degree to which I’ve succumbed to fear. Or that you may hold me now as less stable in some way, diminishing your desire to be in contact with me. I hold it a bit like Achilles pointing at his heels. Not that I hold myself as invulnerable as Achilles, but...you get it.

I also fear being met with the wrong amount of care. Both too much and too little feel strange to me. I’m wanting that goldilocks zone of light empathy. But I also want you to know that I really am not currently suffering about this ordeal. It is sufficiently enough in the past for me to often forget that I spent the better part of a year in this prolonged anxious state.

It is also necessary to name my disappointment that this whole experience wasn’t enough for me to take the leap, to jump fully into all that I long to do. I have fallen back into the momentum of many habits and behaviors that don’t really align with the life I dream of living. I’m still scared to really go for it. I have chosen comfort and security over aliveness and growth more times than I care to admit.

Why share this now?

I’ve spent so much time thinking about writing. There is a lot that I am called to express, but each piece seems to require proper context for it to have a chance of being received as intended.

This chapter of my life was humbling. It does not suit the image I’d like you to conjure in your mind as you think of me, and yet it is true. To withhold it is to subtly manipulate your sense of my biographical self. And the gap between your sense of “me” and my sense of “me” is becoming more painful, or exhausting to sit with. There may not be much to do about that. But I can at least try to close the gap.

So here it is. Another attempt to be honest.

May I have more courage at 38 than I had at 37.