Something I wrestle with constantly is learning to appreciate my blessings without clinging to them. Like most people, I want the people I care about to live forever and I want all the circumstances that are favorable in my life to remain indefinitely and I want my body to resist the decay that is inevitable for any human with or without Ehlers-Danlos Syndrome. Is that too much to ask?

Oh right, it is. Given that, I need at minimum to be intentional about how I look at the things that bring me joy, meaning, or comfort and yet won’t remain forever. It is easy to capitulate to bitterness over losses, but personally what’s even worse than that for me is the risk of squandering that which is precious because I’m too busy recoiling in fear and resentment surrounding losses that haven’t come yet.

The only way I know to avoid this is to systematically cultivate gratitude. Often what fills me with a sense of abundance is when I realize that my reasonable expectations have already been exceeded. Does that make me immune to fear of loss? Of course not, but it sure lessens my susceptibility to feeling cursed, which in turn takes a lot of edge off that fear. Does it make me immune to grasping for still more? Of course not, but it helps me tame my greedier impulses.

Given the role that fear of loss has played throughout my musical career (given the absurdity of even attempting to have such a career as a person with EDS), I’ve been reflecting on how my consciousness around this has evolved. It occurred to me that my career as a musician has thus far taken on four phases:

Phase 1: Painstakingly developing my skills, hustling to create opportunities, and fighting like crazy to overcome my physical obstacles. While on some level I knew that EDS was going to challenge me, I was still very much thinking of “beating” it such that I could engage in a musical career devoid of compromise compared to anyone else in terms of gig duration/frequency, travel, and so on. The eventual rude awakening (gradual but no less rude) led me to . . .

Phase 2: Pervasive depression. Continuing to play jazz, especially (given the technical/physical challenges and the high bar I’d set for myself), was looking futile and thus pointless. Eventually, through some combination of grieving, half-hearted perseverance, and dumb luck, I made it to . . .

Phase 3: Tending simultaneously to my health and my “bucket list.” I had come to accept a certain degree of compromise with my day to day operations, i.e. the circumstances around which I could perform. However, I returned to my previously high level of ambition and standards for myself as I vigorously planned and executed projects ranging from one-off gigs for which I wanted to sound great to ambitious long-term initiatives and what those in the rock world would call “concept albums.” I developed what at times bordered on a maniacal obsession with my legacy – far more than just trying to create music and enjoy the ride, each endeavor was a determined step on a path towards leaving something meaningful behind when the time came to have to step away from the piano. If there was a project important to me, I pursued it with a drive fueled by trying to ensure that the sounds or ideas in my head be brought to adequate fruition and documented before it was too late.

My 2002 EDS awareness/fundraising album Patch Kit was very much conceived from this headspace, both in wanting to capture my piano playing in the company of some of the elders I most admired (in this case my heroes Ron Carter and Ben Riley) and in wanting to in some way tell the story of my struggles with EDS (and, I suppose, offer what I expected to eventually be a retroactive explanation of “why” once the seemingly-impending moment came when I played my last notes). It was conceived as a likely swan song, but when it turned out that there were more swans around the bend, I did another and then another and kept finding ways to pursue the things that I needed to express and share. I remained hungry, though at the time I didn’t know how much of that was an insatiable fire in my belly and how much was that I simply had a somewhat lengthy artistic bucket list and hadn’t gotten to the bottom of it.

At a certain point within the last few years, I started to do some reflecting on this. By that point I had spent over half my adult life (and the bulk of my career) in Phase 3. By its nature that phase was supposed to be a time-limited whirlwind of activity, but through those years of reinforcement it had become a familiar MO. The immediacy had in one sense dissipated, as I was not to the same degree being compelled by the same literal sense that my next gig or record date might be the very last, but the feeling of urgency had become my default.

I started surveying my bucket list and realized there was not much left on it. It was not empty yet, but there were a lot more items with strikethroughs than items still burning inside me. This realization led me to think that I’d started the shift to . . .

Phase 4: Playing with House Money. For those unfamiliar with the term, it is rooted in a gambling scenario in which somebody has won some money, socks away the money with which they came (their own money), and continues gambling from their winnings. Thus, any subsequent playing with “house money” is buoyed by a reduction in pressure stemming from the sense that even in a worst-case scenario (losing everything), all that’s lost will be something that didn’t really belong to that person in the first place. I’m not a gambler, but I relate well to this phenomenon when framing certain life circumstances. When I had to hang up my tennis racquet for good in 2014, for example, it was disappointing, but when I’d resumed playing after years of EDS-induced abstinence, I was hyper-aware that this was a gift I hadn’t been expecting and that would be finite. As such I vowed to myself that when the end came, I’d be objective about it (as opposed to pushing my body to the point of lasting damage out of stubbornness) and that I’d try to view it through a lens of gratitude for all the house money I’d had with which to play, as opposed to cursing the heavens that it eventually ran out. When that time did come, that was indeed my main takeaway, in no small part because I had been watering the proverbial seeds of that mindset.

While I am not sure if there is a traceable moment at which my musical career shifted to Phase 4, I became particularly attuned to it due to the forced stasis at the beginning of the pandemic (because I was already in the winter gig-hibernation that my body now requires, for me this was not an interruption of gigs but rather a cancelled resumption of them). Aside from being perversely well-equipped to handle an extended and unwelcomed performance hiatus (having endured those periodically for the better part of 30 years), I took the opportunity to survey what would happen if this wasn’t just an interruption but was really the end for me as a performer, and that in turn was when I realized that this shift had occurred somewhere along the way.

I am tempted to pivot here to reassuring all those who enjoy my music that I’m NOT quitting, that there’s plenty more music in me, here is the list of those projects (stay tuned for press releases!) and so on. Barring further unforeseen catastrophe, that’s very likely true, but it’s also beside the point. Maybe I’ll have another 25 years at the piano, maybe EDS will get the better of me sooner than later, or maybe I’ll get abducted by a UFO when I go out to the car in a few minutes. When I began planning Patch Kit 20 years ago, I had no idea whether that would be my final statement or whether, if it turned out to be so, whether that would be “enough,” and I have a great deal of compassion for my younger self trying to plan and make music under that cloud.

But at this point it HAS been enough, and if I’m honest I probably reached that threshold long ago. That doesn’t mean I’ll turn away from any subsequent music-making gifts any more than I’d neglect to savor any of the other gifts that have already exceeded my youthful dreams. There are things I surely look forward to doing and things I am still eager to contribute. But there is also a tranquility that comes with realizing that anything else I’m able to do as a creative artist is above and beyond what, in all those years of fretting and clawing away, I thought would be realistic. Even if EDS were cured tomorrow, I’d still be profoundly grateful for the window this has given me into how (and why) to be more deeply thankful, something that I try to apply to every facet of my life now.

Someday, should I live long enough, Phase 5 (that of being an ex-performer) is likely to come into play. While I can’t claim with certainty that I’ll be ready or that I’ll meet that milestone with nothing but tranquility and gratitude, I feel very fortunate now to have forged the sense of perspective whereby I can start watering those seeds.




2 Responses

  • david zemelsky

    I think you’re onto big stuff here, Noah. Read it once, but it deserves a second reading. Gratitude means a perfect stillness amongst all the noise that us humans create. Thank you for your core of truth. I appreciated reading it

  • Old Texan

    Very aptly put as always… I always enjoy your EDS Awareness month posts, they are always pretty spot on… It always amazes me the breadth and depth that those with EDS seem to possess in coming to terms with what we are made of and destined to.
    Thank You for continuing this blog !

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