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Monk
My life these days is that of a monk. Cloistered and terrorized, I'm a fledgling monk of the Taoist-leaning Quaker variety. Believe it or not, I'm the only one in this particular local order. With the help of a few trusted guides and a robust 12 step program of recovery, I'm sort of blazing the path as I go. When I'm not desperately trying to figure a way to get myself out of this situation, I breathe, I pray, I listen, I wait and I smile. I spend most hours of each day in silence. If there's such a thing as grading in the monastic life, my sister tells me I'm getting an A+.
To be clear, contemplative living was not my first choice. I'd prefer to be growing spiritually on the ultimate field or on a mountain trail or in front of a gymnasium full of elementary school students. But they say "grow where you're planted" and it turns out, this is where I'm planted. After all my hard work at being amazing, after all my striving and all my reaching, this particular path got especially chosen for me. The path of humility. I'm not sure who did the choosing, but there's a mean-spirited, complex, multi-system chronic illness involved. She goes by the initials M.E./C.F.S. and she's been my bedmate for years.
I live in luxury accommodations over here on South Chestnut Street. I know it's not your typical setting for a monk's life, but I'm grateful for the amenities. Come to think of it, the number of electronic devices by my bedside alone may disqualify me for official monkhood. But full disclosure, I never actually applied for the job. I've got two electric wheelchairs, an adjustable bed, a stair lift, a wicker recliner, a live-in caregiver and a wide array of connections to the outside world. From what I hear, most monks get nothing but a wooden stool.
I remember visiting an actual monastery when I was a much younger man. Mostly, I recall how scared I was of the quiet. I remember the suffocating thought of having to live in such tranquility forever. On that summer afternoon somewhere in Ohio, probably high on coffee and muffins, the lack of distractions felt sickening to me. From where I lie now though, in this darkened room with silencing headphones and an eye mask, the natural setting of that monastery sounds heavenly. My windows are covered. My view is mostly of the inner world -- a dense swirling soup of chronic illness. I spend my days hungrily seeking the stillness that lies hidden somewhere beneath the internal chaos.
Let me tell you a little bit more about my bedmate, ME/CFS. Honestly, to call her my bedmate is a bit misleading. She doesn't actually live in my bed. She lives in my body. But except for the fact that I'm sick all the time and I barely have the strength to whisper, there’s no proof that she even exists. She’s a phantom complex of subjective symptoms that me and millions of others have come to know as a horrible illness called M.E. I guess depending on how you look at it, she is me. Seeing it that way, I should probably figure out a way to make friends with her. I'm workin' on that, but for the sake of the story, I'll refer to her as the scary monster that's terrorizing me from underneath my bed.
I carry with me a constant underlying fear of her attacks and I never know when the next one's gonna happen. It seems that she strikes when I've broken the rules; but unfortunately, after all this time, she's never actually told me what the rules are. When I think I've finally figured 'em out, she changes 'em without asking me. So I walk on eggshells and I push the boundaries. I'm in a perpetual state of hoping that maybe this time I've outsmarted her. Usually I'm wrong.
Over the months and years, I've survived many dozens of her attacks. Because of their sudden and unpredictable nature, I call them "crashes." Each of these crashes has been a specific event with a date and a time. I used to mark them on the calendar, but today, due to their frequency, I just shake my head in weighty acknowledgment of my powerlessness. Each crash lasts only a few minutes, but the long term consequences are devastating. Within a day or two of the event, I'm left more disabled than I was before. It's been a brutal and traumatic process of loss. Crash after crash, my body's been slipping off into the realm of the spirit.
Like a good monk, I alternate between vowing to be perfect and saying, "Screw it. I'm just gonna live my life." With all my first hand experience of the cruelty of this particular monster though, I've regretted having ever taken the latter approach. These days, I lie awake at night trying to breathe away the fear of the monster. I use a variety of bedtime mantras to get me through the night. "Total surrender. No resistance" is one of my favorites. A half milligram of Ativan works even better. Sometimes I go under the blanket to kiss my own knees and cry. It soothes me to whisper a familiar message from my dad. He says, "I love you, Hal. I'm here for you. I'm so proud of you, son."
I woke up on Sunday morning grateful that I'd finally fallen asleep the night before. It had been six days since the last crash and I was relieved that I made it through one more night without one. Within minutes of becoming conscious however, at six o’clock in the morning, I felt the sudden onset. It began with a distant quiver in my chest which soon turned into a racing heartbeat. Then my brain felt like it got hijacked by a black wall of fear. Then just as quickly as it began, it was over. On this occasion, with the steady presence of a monk and the submission of a beaten man, I remained calm while I watched the whole thing come and go. I didn't text my caregiver. I didn't call my sister. I just lied there and felt... as a tear welled up in my eye.
The same story has happened many times. As the monster slinks back to her place under the bed, she leaves a little shot of adrenaline in my blood which actually makes me feel better. My breathing calms, my heartbeat steadies and my nervous system relaxes. I've learned that this feeling of wellness after a crash is the calm that precedes the storm. As the pattern goes, after a wired day of adrenaline, I experience a deep drop into weakness on the day after. Then after a day or two of grieving the loss, I settle in to the new normal. Over and over again, I adjust.
Yes, 2024 has been the “year of the monster," but it's also been a year of personal growth. My body is feeble, but my spirit is strong. Having been forced to slow down so radically has given me time to recalibrate my whole code for living. With special thanks to the monster, I'm a different man today than I was. Values such as honesty, humility, gratitude, purity, unselfishness and love have become the guiding principles of my life. I'm far from perfect, but today, instead of yearning for fame, I'm practicing quiet. Instead of lusting after what's not mine, I'm opening my heart in search of the divine. Instead of grasping for more, I'm sitting with the discomfort of what is. In a life now led by stillness, I'm getting glimpses of contentment like never before.
That is, up until just a few days ago. You see, last Friday, I went viral on Substack. By Tuesday, my “Note” had gotten 1500 likes and 47 restacks. With 200 new subscribers for my publication, I got a taste of success on this powerful platform of the cool people. Reminiscent of blowing up on TikTok in 2020, I'm faced with a familiar struggle. My soul yearns for wildflowers but my brain craves that little notification bell all lit up with numbers on the screen. Whereas a week ago, I was in full-time monk mode, now I can't stop reaching for my phone in search of more.
Starving for anything that feels good, my hunger is insatiable. But rather than filling the soul, the numbers are like ashes in the mouth. The craving pulls me away from the direction of the spirit and leaves me unsatisfied. On the other hand, there's so much goodness in the creative process and I’m so grateful to have an audience. So where do I find the balance between the Source of all Being and the undeniably addictive nature of social media? With the way my nervous system’s been runnin’ lately, I better be mighty cautious while I’m doing the research. In the household of the monster, anything beyond prayer and meditation is questionable.
In case you haven't figure it out yet, there’s no actual monk and there isn’t a monster. It’s a real life story about a spiritual guy who's stumbling along on the path of severe chronic illness. I wonder where the story goes next. We can all be certain that there'll be some tall mountains to climb and probably deep valleys to trudge. I imagine there’ll be some grand views along the way. Who knows? Maybe the monk and the monster’ll find their way as the most unlikely of friends. Whatever happens, I hope we all join up on the mountain, hands on shoulders in a big circle, with all our beauty and all our brokenness, holding each other, loving one another and making sure everyone’s ok. I hope to see you up on that mountain. Be sure to wait for me if you get there first.
P.S. I saw this photo on a post by
of and it touched me so deeply that I wept. I cry easy. Also, thanks to for playing bass with me on the podcast recording.
Monk