So picture this. You’re at an early summer barbecue, and a couple you haven’t met before arrives. They’ve got a large cooler, but the woman is the one carrying it. You give the man a firm handshake and he pulls his hand back as it crumples in yours, but he’s still smiling. After he declines the beer you offer him and does the same to the iced tea (“no thanks, water’s good”), he sits down . . .  and then soon stands back up, repeating this a couple times until the host of the barbecue appears with a cushion. Then he sits for real and you ask what he does; he says he plays the piano and it just so happens there’s a piano inside. When you ask him to play something, he demurs with a vague-sounding excuse of being “not warmed up.” At that point a call comes from the patio outside asking for the men to come help move the grill; this guy doesn’t get up, but his wife goes out to help instead. As the food comes off the grill, someone gives a little speech thanking the hosts; as folks applaud, you notice he’s doing so silently. Later on he does play the piano, but only after disappearing to a private corner of the yard to do bizarre-looking gestures with his arms, and in the meantime he’s put rings on all his fingers.

If you had this encounter, you would likely have left with a sense (even if unconscious) that there’s something weird about this guy (if you have no such biases, take a bow). And that doesn’t count the things you didn’t even notice. Like the bruise on his arm from when you tapped your fist on it to punctuate the punch line of that great joke (at that point he determined it would derail the conversation to ask you not to do that, so he just backed away). Or the way he always kept at least 15 feet away from your exuberant dog, in spite of assurances that “he’s friendly.” Or that he was calculating whether you were likely to “get it” if he explained the reason behind his impaired manliness, possibly concluding that it wasn’t worth the attempt.

Fact is, it’s human nature to experience some confusion (and quite possibly limited tolerance) when someone is not meeting expectations and there is no obvious explanation. Why isn’t this seemingly normal person behaving normally? As much as I’d love to see that aspect of human nature evolve, in the meantime it sure does help when people ARE aware of the root cause of the otherwise inexplicable circumstances. I sure do long for the day when I . . . er, I mean the fictional character described in the previous paragraphs, can simply say “I have Ehlers-Danlos Syndrome” and know that the corresponding quirks will then be understood and tolerated. The conversation about baseball is still welcome, just go easy on the punch on the arm (and if you’ve ever been the purveyor of such a punch, I assure you that you are 100% forgiven, just don’t do it again, please).

……………………..

May is EDS Awareness Month, and as many (but not all) reading this know, I was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder of the connective tissue that leads to faulty collagen production (in my case largely resulting in fragile skin, loose, vulnerable joints and sensitive internal organs). As I try to do each year, I knew I wanted to address life with EDS, but this time I hoped to do so not from the angles of lifestyle compromises or living with chronic pain – I’ve talked plenty about that stuff before, so you can wait for another year or read the liner notes to my Patch Kit record if you have a Jones for that. What I instead want to discuss is how one’s ability to “belong” is impacted by having a “rare disease” (Never mind that EDS is a syndrome, not a disease – at this point I’ll take “in the ballpark” over total ignorance any day – even with doctors, it’s sometimes the best I can hope for).

As such, my “chosen topic” is the tenuous balance between disability and belonging. Let me make the important point, first, that we have all felt what it’s like to have a compromised sense of belonging, even if it is a fleeting circumstance. Maybe you don’t make the team or get the job. Maybe the cool kids don’t want to play with you or maybe you aren’t allowed to play with them because you didn’t finish your homework. Maybe you arrive at the dinner party to discover that the featured dish revolves around an ingredient to which you’re allergic, or maybe you weren’t even invited. Maybe someone doesn’t realize what your religion or ethnicity is and makes a crude joke about it and people laugh. Maybe you injured your knee skiing and now you can’t go on the trip to Aspen with your friends. And if nothing like this has ever happened, you’re probably struggling with isolation due to being one of the 4 or 5 people in the world so perfect as to be immune from such experiences. The point is that we can all relate to (and most of us can feel compassion for) the experience of being left out or otherwise unable to fully belong. The disabled by no means have exclusive domain over this struggle.

There is an interesting dynamic, though, that surrounds a little-known medical condition, especially an “invisible” one like EDS (e.g. I “look normal” save for the ring splints and the scars, and people can usually explain those away by assuming I’m a jewelry-loving guy who survived some kind of intense car accident). Some people are, of course, fundamentally intolerant or just plain mean, but there are many folks who might be more inclined to adapt to something they can see or comprehend or put into an existing mental category (arm in a sling = don’t ask to carry things; vegetarian = don’t serve meat; elderly and using a cane = suggest an activity other than tackle football), Those folks don’t have anything to wrap their brains around when they see me. This is not to say that a wheelchair-bound person does not feel isolated or excluded (and I am certainly not claiming that it’s somehow preferable to have a more severe but better-known condition), but it’s interesting to notice how that person generally doesn’t need to explain his need for an elevator key. A kid who takes out an inhaler on a soccer field is not a strange sight (and I’m sure most of you thought of the word “asthma” before I said it). Even certain formerly “strange” dietary issues (lactose intolerance, wheat allergies, etc.) have become common enough that most civilized folks will have some capacity to adapt and will do so without shaming the person with the restricted diet.

I am really fortunate to have a couple things going for me that limit my own vulnerability to potentially insidious feelings of not belonging. One, for whatever combination of reasons, I’ve developed the strength to compartmentalize those feelings (e.g. it feels bad to not stand out in that way, but I can look objectively at the situation and shift focus to what I can practically do about a given situation). As such I’ve learned how to explain my condition to others and I’ve learned how to protect myself emotionally in the event that I’m not met with compassion or understanding. I suspect this trait has helped me, beyond the realm of EDS, to make some of my most important outside-the-box life decisions (becoming a musician, becoming a foster parent, etc.).

The second coping mechanism is that with some frequency I get to be around folks who understand, whether they’ve thoroughly educated themselves about EDS or whether they simply care about me enough to adapt to my limitations. Close friends are conscious of what they ask me to do physically or what they feed me, current, former students help out with yard work, and long-time musical colleagues have realistic expectations for my physical endurance (including my limited capacity to travel or to haul equipment without consequences) plus compassion when circumstances force me to push beyond it. In those situations it’s perfectly “normal” that I need a cushion before I sit on a hard chair or that I have to do weird-looking tai chi stretches before I can play the piano or can’t go out for a beer after the gig. The greater proportion of my time spent in those circles, the more I feel “normal.” And frankly, I like it that way; however open I may be to talking about this stuff, that doesn’t mean that I wouldn’t prefer to just fit in

Disability and childhood trauma (and I’ve had both) are both high on the list of things that can challenge one’s ability to belong or even learn how to, – I don’t know why I developed the ability to persevere through this (aside from the fact that I’ve spent 30-plus years working on it really hard), but for all intents and purposes, I’ve done so. As such, you can spare me your worry or pity (beyond cutting me some slack when I need a cushion when I come to your house, wouldn’t be able to handle the caffeine in the coffee you offer me and that sort of thing). You can also forgive yourself if you fear that you’ve ever inadvertently contributed to the dynamic I’m describing (if, on the other hand, you’ve done so on purpose, then you can do the other thing to yourself that begins with f).

That said, I also know that misunderstood physical fragility can lead to a whole host of experiences that foster emotional fragility. Another way in which I’m fortunate is that I was diagnosed with EDS young (age 8-ish), so I didn’t have to spend a lot of time wondering what was wrong with me physically. But I have many friends diagnosed in their twenties or thirties, having spent years being misunderstood by doctors and civilians alike. Many of them (props to my posse, the Western CT EDS Support Group) are immensely strong and inspiring. But just imagine for a moment the impact being inexplicably “abnormal” throughout one’s formative years. This post is not for my own sake, it is for all the people who have struggled or are about to struggle with the emotional fallout of being misunderstood and may not have the resources to come through it with their spirits fully intact. Even if a cure is never found, I believe that important change can happen in this way and that the inevitable pain and struggles attached to EDS needn’t result in unnecessary and preventable emotional distress.

If you find yourself with a bleeding heart and a surplus of cash, I certainly encourage you to donate to the Ehlers-Danlos National Foundation (http://www.ednf.org/), but really my intention here is to just spread the word, which shouldn’t cost you anything. Pass along a link to this post or talk to a friend about it – anything that raises awareness now just may save somebody from isolation down the road. Thank you.

25 Responses

  • Martha

    Noah,
    Thank you for such a thought provoking piece. I did forward it to some of my friends and I hope they find it as enlightening as I did.. Thank you

  • Hi Noah, I read your post and I find it really well written. I will tweet about it and try to direct more people to it. I look forward to seeing you this summer.

  • Peter Sly

    The rest of us will add “powerful but self-effacing writer” to the description of Noah Baerman. I know you won’t do this because you are too modest. When I read this, I understand why your music is so compelling. p.

  • Siggy Davis

    WOW…!!!! i knew that you were special in my book…i have the uncanny yet, blessed habit of not “seeing “things..i mean i can see straight through people ….Yoruba and Black Foot Indian blood….when i saw your rings on your fingers , i thought….how beautiful your hands are…thats all…then when you played… enuff said…Thank you for helping me to really look and understand…
    Stay Blessed, Siggy….xxxooo

  • Phil

    Well-written and well-thought-out piece. I’m grateful for being able to count you among my friends.

    Phil F.

  • marian

    Noah,
    Thank you for taking the time to write this, and for continuing to share your enormous talent for communicating in myriad ways (as a teacher, composer, musician, parent, writer….) We’ll share this information and look forward to your upcoming gigs.
    – Marian (and Greg)

  • Gary McMahon

    Noah, thank you for this important information. I had never heard of Ehlers-Danlos Syndrome. Your writing is clear and engaging, and I commend you for being able to present both the subject and details of your own thoughts and experiences. This is bound to educate and inspire many people. P.S. I like your piano playing. I have your “What It Is” CD and I’ve listened to it many times. I’ve heard you play live twice, and I most recently ran into you when we both attended the same “Baby Grand Jazz Series” concert at the Hartford Public Library.

  • Brilliant Noah. Thank you for enlightening us to this situation which is ever-present for you and somewhat invisible for those who surround you. My friend Woody calls everyone difabled, meaning that we are ALL differently abled regardless of how we are labeled by doctors, teachers, parents, etc.

    I’ll never forget my first day on campus at Weslyan and seeing you walking around doing tai-chi. I immediately felt at home and you’ve inspired me to do tai chi with my students at the beginning of every class.

    Huge props for perserverance and keeping the creative flame alive.

    Peace,
    Craig

  • Russell Kerschner

    Beautifully written Noah. The EDS foundation would be lucky to get this for its educational material.

  • Danella

    THANK YOU Noah for sharing. You gave me not only intellectual but spiritual insight…

  • Karen

    Well written ,You are a gifted beautiful dear old friend. Thanks for the share & I will pass it on….. 🙂

  • Liza

    Bravo, Noah, great description of what living with EDS feels like. I hope you will submit this piece to Loose Connections too!

  • Patty

    Thanks for sharing it helps us all who are caring!

  • Thanks so much for the post. I never heard of EDS and can appreciate your desire to spread the word. I feel so for the people who are undiagnosed, not knowing what’s wrong with them.

  • Sarah-Jane

    Thank you for this, Noah. Your thoughts and feelings are so well-communicated, I look forward to sharing this with my friends and family not only to educate them, but also so that they, too, can know you a little. Truly amazing.

  • Sandy

    Noah – I have not yet met you, but I look forward to it more each time I have any contact with you. I had no idea you wrote words as beautiful as your music. (Well, almost, because mere words can never be quite as beautiful as incredible music!) Your students and friends are so fortunate to have you in their lives. Thank you for bringing EDS to light for more people – it is a great help.

    P.S. If it is not asking too much, could we have permission to print this for an EDNF publication?? It is so powerful…

  • Hey Noah, That’s a beautiful piece of writing, one that reminds me of the way your harmonic progressions fit intricately together while the melodic lines skip along, soar high or linger within. Moving. Enlightening. Informative. I’ll spread the post far and wide!

    Let’s play tennis this week.

    Peace, indeed. -Michael

  • Anna Chung

    It took me over two months to actually click on the link of the “Please Read-EDS Awareness Month” e-mail.

    So even though it’s August now, and we are well clear of May, it was worth the wait. There are so many things I don’t know about and now I consider myself a tiny bit more well-informed.

    I consider education to be one of the most valuable things I can give myself. And every new thing I learn about is like a gift.

    Thanks, Noah, for this gift of inspiration, knowledge and your willingness to share.

    On that note, I have to say that I honestly don’t believe that moving barbecues, sitting on hard concrete or beer drinking are denoters of masculinity. If they were, I would have lost all signs of feminity long ago! In life, there has to be balance.

  • kristina

    Thank you!..I found your blog by accident. I am a 34 year old single mom. I was diagnosed not to long ago by accident, long story, but was not told anything except for it was rare and not to worry. I started doing research and finally found a doctor for more information and testing. I go February 7, I am excited and yet very nervous. I have suffered my whole life and have seen numerous doctors. Some have tried to help but mostly, I have been put through many painful and exhausting treatments, only to be disappointed when they didn’t help. Friends and family have been sometimes cruel in their ignorance of how much pain I have been in. I have been called a lazy, old, lacking interest, and much more. Even when doctors said my joints were unstable, people think I exaggerate the pain. I hope to get a clear diagnosis, including all types of EDS that I may have. I am very nervous because for years I’ve been told I have anxiety, however I never thought it was that. Hopefully this doctor will have answers. I am just beginning in my road to educating myself and then those around me. It is so hard to find accurate information. I wish i had some type of support group near me in Boston,ma. For now, I look forward to reading your blogs and thank god for helping me find people like you.

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