I really appreciate the sentiment when people praise me for overcoming Ehlers-Danlos Syndrome. But let’s be clear, I haven’t “overcome” anything. Every day and every time I so much as consider a venture to the piano (or other such instrument), EDS and the corresponding obstacles are central to my consciousness. What is true, however, is that I’ve been able to maintain a career and actually make more satisfying music in my early 40s than when I was in my 20s and clinging to what I thought were the last vestiges of my capacity to perform. While I’d like to put forth that this was somehow a product of my superhuman strength and courage, the reality (and what makes this relevant as something to share with the wider world) is that instead it’s been a largely pragmatic response to the circumstances before me.
Indeed, this is neither mumbo-jumbo nor rocket science. We all have physical limits. We all must pay our physical “debts” (that is, if we want to stay up too late or eat something unhealthy or exert ourselves too hard, we’re humans and have the agency to choose that . . . and then eventually must face the corresponding reality). We all face bodies that become more challenging to manage as we age. We can address all these things proactively or we can get our butts whooped and be angry – in a way, having EDS has been a boon in that all these issues are magnified, so I’ve been forced to find rationality and dignity through it all and just try and make smart choices.
So in honor of EDS Awareness Month, I will use this, my 6th (!) annual EDS Awareness blog post, to discuss some of these coping strategies that have kept me going. EDS aside, this should be of some use to anyone who wants to know what it’s like to navigate these waters, or (with a little adaptation of the specifics) who has some sort of personal challenge in adapting any activity or career to any physical adversity. This began as advice to a younger fellow jazz musician with EDS, but I felt it was worth sharing.
In no particular order, here are some of my own most valuable coping mechanisms:
This is pretty broad, but everything is fair game. What gigs you do, how you sit at the instrument, how and when you use your body for other activities, what you eat – virtually everything should be open to scrutiny and, as needed, change. I have changed everything from my posture to the maximum length of a gig to how I get out of my car and on and on. Some things, like the tai chi warm-ups I do before playing or the silver ring splints that I wear on my fingers (but resisted for years) have had a profound impact. Other things have had a smaller impact, but every little bit helps.
* Remember that everything is connected.
Everything that impacts your health will carry over to how much your body has in the way of resources to negotiate EDS. The conventional wisdom about EDS management has historically been specific to connective tissue issues, and by all means things like ergonomics and avoidance of high-impact activities are important. But so are other things. Everything from diet to sleep patterns to emotional well-being to keeping warm when it’s cold out is going to make a difference, for better or worse. The less you compartmentalize that which impacts your body, the better prepared you will be. Which leads to . . .
* Be realistic and listen to your body.
Sometimes this means stopping when you’re tired, sometimes it means exercising when you don’t feel like it, sometimes it means changing the way you sit. Any way you look at it, your body will tell you important things and it’s your job (ideally) to listen and obey. This even extends to pain – I don’t begrudge anybody the use of pain meds if they need them, but I find it important not to numb pain to the point where you lose that valuable feedback into what’s not working right. And being realistic is so important. You may have an important gig to play or want to practice another hour or drink a couple Guinneses when you’re feeling run-down, but your body doesn’t care about the context of what you’re doing. If it’s tired or sore, it doesn’t matter to your body – it is going to give you the truth about its needs. And maybe you choose to defy your body because you just want what you want so badly – if you’re making an educated choice and are willing to pay the price later (the “debt” I mentioned above), that’s valid too. I’ve certainly had instances in which I was exhausted and in pain “the day after,” but thought “that was worth it.”
* Build strong community and educate those around you.
Aside from helping to lessen feelings of isolation, the more those you work with know about your circumstances, the more they’ll be able to accommodate your needs and the less you’ll have to deal with potentially awkward in-the-moment negotiations. And having people who’ve got your back is invaluable for anybody, especially someone who is physically impaired; I couldn’t ask for a much better illustration than last night’s gig, where the folks in the band and at the venue insisted on carrying most of my gear from my car to the room and back. This need for partnership also includes doctors who, regardless of their specialty, are committed to understanding your issues and earning your trust.
* Build strength
Part of this is mental – that is, developing your resiliency well enough that when you’re having a bad day/week/month you do not fall apart emotionally. However, it is also vitally important to build physical strength in whatever ways are possible and safe. The more muscle tone (not muscle mass) you have, the better you can defend yourself from injury. A variation on this is making sure your technique at the instrument is as good as it can be, so you’re not wasting energy and strength by playing improperly.
* Think, plan and ask ahead.
Sometimes we get hit with unexpected circumstances and are stuck having to navigate situations in which we either put our bodies or our standing on that gig at risk. We can’t avoid this completely, but we can catalogue these things and know to plan ahead next time. If you need to eat on a schedule, bring a snack even if you’re being fed on the gig. If the gig pushes your outer limits in terms of length, state up-front that even if extra money is thrown at the band, you will be done at the end of the last contracted set, and if the bandleader or venue isn’t okay with that, maybe you shouldn’t take the gig. People unaccustomed to this can be disarmed by these kinds of questions and boundaries, but the more accustomed WE get to stating them, the mellower those transactions are.
* Adapt your musical actions when necessary.
This can take many forms depending on your musical personality and circumstances, but certainly a great thing about jazz is that (unlike, say, playing Rachmaninoff), we get to choose much in terms of what and how much we play. For some a valid solution might be to play more sparsely. Me, I like to have furious moments (I’m more McCoy Tyner than Count Basie – apologies to non-jazzbos to whom this is a meaningless statement), but whenever I play a burner, I follow it with a ballad to let myself recover. I play less solo piano than I used to and if the gig is beyond a certain length I almost always play with a rhythm section that will keep things going seamlessly if I need to shake out my hands for a moment. I have stopped playing in scenarios such as dance classes in which it is disruptive for me to adapt in this way, and in the big picture it’s well worth it.
* Be efficient.
The more efficient you are and the better able you are to practice mentally, the better you can make use of whatever time you have at the instrument. I talk about this in depth in the following blog post:
* Keep in mind that all bodies break down.
This sounds kind of depressing, but it’s true – unless you die suddenly, your body will break down regardless of underlying disability. Maybe age, maybe accident, maybe disease, maybe a combination. The relevance here is that a) whenever you’re forthright with others about your circumstances, you’re helping them prepare for the inevitable challenges they’ll face with their own bodies and those of their loved ones, and b) this basic awareness can help mitigate bitterness over “why me?” Indeed, I keep coming back to the notion that, as obscure a condition as EDS may be, in the bigger picture it is part of a universal struggle with human frailty. It may be counter-intuitive for some, but there is nothing inherently stopping us for coming together in nurturing solidarity over this – everybody wins when this happens.