I had some special performances last year, but I think this one might have taken the cake, and in honor of EDS Awareness Month, I’ll reflect on it a bit since it is highly unlikely that you were there, as well as reflecting on a few of the moments that shaped me to be especially grateful for the opportunity.

Moment 4 (and yes, I realize we’re going out of sequence):

in December I played a private concert for Caryl Johnson (technically an audience of 3 including Kate and Caryl’s pooch, Annie). I’ve described her as “the hand therapist who saved my career” for so long now that I sometimes have to go back and contemplate what that really means. And, at least as importantly, what it meant for me in my late teens when my dreams appeared to be crumbling, few of my artistic and professional goals had yet been achieved, and I didn’t have anywhere near the support structure that sustains me now.

So we’ll rewind back to 1992, a year that marked my first bout of severe wrist pain and my “launch” to music school at Rutgers University’s Mason Gross School of the Arts. As college auditions and senior year of college juxtaposed against the wrist issues, numerous doctors shrugged and said some variation of the same thing, “huh, I guess it’s tendinitis, so if it hurts when you play piano, then don’t play,” with no apparent understanding of a) the holistic importance of playing, b) the folly of letting muscles atrophy as if when I got back to it I wouldn’t just injure myself worse, or c) the way Ehlers-Danlos Syndrome played into it all. Finally in the Spring I got an MRI and the surgeon who ordered it found a cyst on my right wrist.

Moment 1:

Said surgeon gave me the green light to play as much as I wanted to over the summer (leading up to August surgery) as long as it was “within my pain tolerance.”

As such, I played A LOT that summer (in hindsight, doing substantial further damage) and learned two particularly resonant things from the experience. One, my pain threshold, even at age 18, was quite high. Two, whatever pain I was navigating was tolerable when experienced through the lens of perceiving (albeit inaccurately) that I would experience relief in the foreseeable future. I guess false hope was still hope, at least for a while.

So I went off to college a few weeks post-surgery, the wrist didn’t heal, and after a few months of gutting through (and practicing 6-7 hours a day, wrecking my other wrist in the process), I revisited the surgeon, who said “hmm, well, I guess it WAS the tendinitis after all.” No “sorry,” no “good luck,” certainly no “and let’s look at what else we can do to help you.” Quitting the piano wasn’t a viable option, persevering was also not a viable option, and so I limped through the day to day limbo state. . .  until, by divine intervention, one professor steered me to another who steered me to another who gave me Caryl Johnson’s phone number and I made an appointment.

Moment 2:

Within a few minutes of meeting Caryl, two things became apparent. One, she cared about my healing, and two, she was exceptionally wise and competent.

I had by that point experienced some folks who were one or the other (and plenty who were neither, at least with regards to my needs) but the combination of personal commitment to seeing the process through and clear mastery of the skills needed to actually do so made me a new person. At once I had a path forward and had my hope renewed. My daily rehab regimen was necessarily strict and specific, and that in itself was a lifeline because it underscored the belief that it would help me, and as soon as the evidence of just that began to mount, I became inspired. Even though I couldn’t log a lot of time at the instrument yet, I was fired up with a level of enthusiasm (even for the tedious exercises) that carried me through . . . until my next significant flare-up the following fall semester.

There I was again, now wondering if my hope had been naïve. The low point was spending a lot of time and out-of-pocket money to see a fancy NYC rheumatologist who was incredulous that I would think it sane to pursue a career as a pianist with EDS – the image of him asking, rhetorically, “what do you want ME to do about it?” before sending me on my way will forever remain etched in my mind. I was on the brink of despair, exacerbated by well-intentioned friends understandably not having the capacity for compassionate presence amidst such turmoil, but I at least had the wherewithal to call Caryl. She, of course, systematically guided me through the latest rehab process.

Moment 3:

Interestingly, what I remember most vividly about that period was that on the phone she matter-of-factly instructed me to dismiss the doomsday prediction and assured me that we’d figure it out. That moment of reassurance from a trusted person (who I knew could and would help me find the tools to bring it to fruition) was what turned me around even before the tangible strategy was established. Yes, I did the work, but I couldn’t have found the will to do that if I were wallowing in the perception that I was done with music and the best-case scenario was to find an alternate plan for my life. The months of rehab and subsequent years of vigilance all stemmed from about 15 seconds of having my fire of hope stoked.

Even if I had ultimately had to give up the piano, that sense of hope and determination defined my life force on a basic level, and in many ways it still does. Every technical adjustment, dietary tweak, trip to a therapist or doctor, deep breath to re-center a positive but lapsed behavior, each of those things is fueled by hope, and I did not build that foundation of hope alone. And as a parent and an educator and a community-minded human, each passing year reinforces for me how vital it is to do my level best to help shine that light through others, through proactive compassion and through attaining whatever mastery and wisdom might enable me both to help others and to earn the credibility whereby the hope I offer is genuine and my reassurances aren’t empty and misguided platitudes.

All of which leads me to the blessing of . . .  

Moment 4:

. . . where we come back full circle to being able to share some tunes with Caryl this past December. If I had never seen her again after the fall of 1993 my debt to her would still be incalculable. But what a gift that well past her retirement (and well past her 90^th birthday) she remains a friend and a beacon of light. And part of what is so extraordinary is how not extraordinary she is. To be in her presence is to hang out with a strikingly humble, normal human. To hear her talk about hands, occupational therapy, and so on, is to receive information so logical and straightforward that what’s perplexing is not her brilliance but rather bewilderment that not everyone in that field is endowed with the same knowledge. If her life’s goal had ever been to hoard accolades for how superlative she is, these observations would represent an anticlimactic conclusion to this essay.

The real takeaway for me, however, is that we ALL can cultivate that capacity to nurture while developing whatever skill and knowledge may enable us to translate that energy further within whatever realm we inhabit. Sometimes the folks in need of that hope wear their vulnerability on their sleeves, sometimes (as in an “invisible” condition like EDS) it isn’t overtly apparent. Sometimes the condition is broadly shared (like, say, a moment of profound societal turmoil), sometimes it is unusual and potentially isolating (as in a “rare” condition like EDS), but I think it’s safe to say that if you look around (likely including the mirror) it will not be hard to find those who would benefit from an infusion of true hope and to find affirmation that developing the capacity to provide that infusion is a gift to the world. In addition to everything else, Caryl, thank you for that lesson.