On the coooover of Rolling Stoooone . . .
Maybe next month?

So did you read the latest Rolling Stone? You might have missed it, but the cover story about me has some really sexy photos and a probing interview about my creative process and the 38 weeks* per year I spend making glorious music and sharing it with overflowing stadiums of adoring fans.

* 38 weeks may seem a bit lazy for someone getting that much attention, but considering that I also have four Grand Slam tennis tournaments to win each year. Each of those takes 2 weeks plus a week of preparation beforehand. That equals 50 weeks, and I do take 2 weeks’ vacation because a) I need some quality time with my family and b) I am a human being, after all.

Oh wait, I guess that isn’t accurate, is it? Well, if you have ever wondered about how glorious my life would be if I didn’t have Ehlers-Danlos Syndrome (as, of course, I have), maybe you’ve come to a similar conclusion. Since May is EDS Awareness Month, I have been thinking about “what might have been,” though maybe not in the most obvious ways. If it were in the most obvious ways, it’d sound something like this:

IT’S NOT FAIR!! I was supposed to go on the road with my musical heroes and sell bazillions of records and win shiny awards and be on magazine covers and have all the money, fame, and respect that (names of successful peers retracted) have! I worked hard to earn all that, and because of this damn medical condition, it was all taken from me. I can’t play long gigs, spend days (much less months) on the road, stay up late at jam sessions, schlep gear, do a gig and a record date on the same day, or even eat or drink whatever’s available at the gig. IT’S NOT FAIR!! SCREW YOU, EDS!

The thing is, I don’t actually believe that anymore. The most obvious reasons are that a) I know plenty of great, committed musicians who deserve all the things mentioned in the previous paragraph and don’t have them and b) it’s not necessarily true that having those things brings about happiness.

But what I really want to discuss here is the natural but illogical notion that we can take a difficult life circumstance and project life without it, a life in which all the things we like about our situation either remain the same or improve. Even if we accept that the above-referenced “what might have been” scenario is abstractly possible, what are some other possible outcomes for the trajectory of my life?

  • • Scenario 1: Unencumbered by EDS, my music career thrived in all the ways described above. As a result, I had sufficient access to temptation that I embraced the stereotypical “artist lifestyle.” Over the years, I developed an STD, spent my money unwisely, and wound up with a drug habit that I would need to spend the rest of my life tending to with the limited resources I didn’t already squander.
    • Scenario 2: Unencumbered by EDS, my music career thrived in all the ways described above. As a result, my life on the road strained all my important relationships, leaving me estranged from my kids and hopping from one relationship (or possibly marriage) to the next whenever the honeymoon period ended and the reality of day-to-day relationship maintenance sprung up. Not having dealt with the physical struggles, my compassion never entirely developed and even my professional relationships lacked true warmth and understanding.
    • Scenario 3: Unencumbered by EDS, my music career thrived, giving me success out of proportion to my emotional infrastructure. I never had to confront my demons or deeply assess who I was or what I wanted out of life. Thus, each coveted milestone I achieved brought about a further feeling of emptiness and despair, as the gap between my life on paper and my inner reality widened. Eventually I got out of music altogether because I didn’t know how to deal with this gap and the reality was too depressing.
    • Scenario 4: Unencumbered by EDS, I never got serious about music, because contact sports were never off limits. So instead I focused my youthful energy on different sports and became popular in school. I got mediocre grades, tried and failed to make it as a baseball player, didn’t get a college scholarship to compensate for my grades, bulked up as soon as my metabolism changed, and went about the rest of my life doing odd jobs without a sense of purpose and looking for love in all the wrong places without having any people skills to compensate for losing my athlete status.

In reality, the likelihood of any of these outcomes is at least comparable to that of the peaches-and-cream scenario. Life is a complex and interrelated system of things and we simply can’t just replace one thing with another and assume everything else will be the same. Maybe my EDS-less life would have been one of joy, glory and validation. Or maybe it would have been marked by shallowness, wastefulness, mediocrity, or self-sabotage. Unencumbered by EDS, the most likely scenario is that I would have lived a life bearing no resemblance to this one and turned out to be someone else entirely doing something else entirely.

I literally do not know who I would be without Ehlers-Danlos Syndrome. I don’t mean that in a quasi-heroic “character-building” sense, although that is part of it. I also don’t mean it in a generic “appreciate what you have” sense, although that’s also part of it. I mean it in a very matter-of-fact way.

Because of EDS I live in a state of flux between two poles. Hurt and healing. Struggle and transcendence. Connection and alienation. Despair and hope. I’m in a never-ending boxing match with EDS. It has the power to win by knockout and I don’t . . . but if I am smart, strategic, and willing to take it on the chin and get back up when necessary, then the scorecards just may come out in my favor, or at least I’ll prolong the bout. This is fundamental to my life, to my character traits (good and bad), and to my music – every note I create is an attempt to express the same self that would be indistinguishable without EDS.

Do I wish I didn’t have EDS? Of course I do, I’m neither a masochist nor a Buddhist monk. But the resistance has melted over the years – it’s fundamentally part of who I am, and I am grateful to be me. As always, my greatest hope for all those impacted by EDS is for more forward motion in the struggle. More research, more knowledge, more public awareness and support. All human beings have challenges that make them wish they could wave a wand and eliminate particular circumstances with no negative impact on anything else. It’s natural, it’s understandable, but it’s not the way human existence works. And it will become all the less necessary to go on these flights of fancy as all of us keep building a world in which people have the support they need to face their struggles with hope and dignity.


2010 EDS Awareness: Belonging

2011 EDS Awareness: Accommodations

2012 EDS Awareness: Losing Everything

2013 EDS Awareness: Compromised Expectations and Desirable Communities

2014 EDS Awareness: Persistence

2015 EDS Awareness: Professional Coping Skills

One Responses

  • Erika

    Lately my “what might have been” thoughts were leaving me disconcerted. This post could not have come at a better time! It helped to put things back into a more down-to-earth perspective. Thank you NB!

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