NOAHJAZZ - NB PONTIFICATES

MY REFLECTIONS ON MUSIC, LIFE, FOOD AND WHO KNOWS WHAT ELSE . . .

EDS Awareness Month 2012: Losing Everything

For a few moments, imagine losing everything. What “everything” means is in this case subjective. Maybe it means losing your spouse or your kids, maybe your home or financial security, maybe your career or your passion, maybe your health. You may not have literally lost everything (something that is only the case if you die, all that you leave behind is gone and you are totally forgotten), but it sure feels like you have.

Are you still imagining this? Probably not . . . because doing so sucks! Most of us can imagine this scenario with disturbing vividness, and it’s no fun. Okay, NOW imagine losing everything and not understanding why. It’s bad enough if your spouse leaves you for someone else or if your savings disappear due to rising expenses or you lose your job due to the economic downturn or you wind up with broken legs due to a car accident – all of these things would be horrible, gut-wrenching circumstances with which to have to cope. But imagine losing your spouse, your money, your job and your health with no comprehensible explanation for why. This is maybe even less pleasant to think about.

This is what life is like for so many with the connective tissue Ehlers-Danlos Syndrome (EDS). If you haven’t read my last 2 years’ worth of EDS Awareness posts, I invite you to click here to read about Belonging and click here to read about Accommodations. I had a couple other topics planned and semi-written for this year’s post (note: May is EDS Awareness Month), but then a largely unrelated circumstance made me start reflecting on the idea of loss. A little over a month ago my ears suddenly and inexplicably went kerplooie. I had the worst tinnitus of my life, a loud, stifling vertigo-inducing buzz that made it so I couldn’t really hear music and couldn’t handle the volume of my own piano without earplugs. Eventually I got the diagnosis of blocked eustachian tubes and got some meds that slowly but surely addressed the issue – as of now I’m back to maybe 80-85% of normal. In the meantime, though, the severity and inexplicability of the malady made it difficult to subdue a feeling of panic – after all, what is left of my career without my ears?! Of course I’d work it out if I had to, but I was pretty spooked, and it didn’t help for this to be coinciding with a host of EDS-related things such as back pain, joint achiness and fatigue, sores on my elbows that wouldn’t go away and so on – these sorts of things are “all in a day’s work” for me, but cumulatively they served to validate the nagging voice of “it’s all falling apart,” and it took a lot of good mental hygiene not to go down that road. This little reminder has led me to reflect on other times in my life when EDS has put me in a similar headspace, something that’s happened often enough to become almost commonplace.

EDS is considered a “rare” condition in large part because only 10-20% of those afflicted receive an accurate diagnosis in their lifetimes. That means that the thousands of people representing the other 80-90% spend their lives suffering from symptoms with no explanation. And those symptoms can lead to any of these other losses – unstable joints sapping health and strength, making it hard to maintain the responsibilities of work or family life. Especially if there is no explanation for these “shortcomings” (save for “you’re lazy and complain too much”), job loss and crumbling relationships are natural consequences. I’ve seen this with disheartening frequency.

And even the “understanding” available to the minority of those who know they have EDS does not necessarily equal enlightenment. I was diagnosed with EDS at age 8, and spent the subsequent 20 years never meeting another adult diagnosed with the condition or a physician with significant experience working with EDS patients. Some doctors who worked with me in the meantime had a general sense of how connective tissue problems might impact things and could advise me on a basic level (e.g. football = bad idea). A few had a bit more knowledge but were either unwilling or unable to help find solutions.

I will never forget one arduous trek to New York in the fall of 1993. At that point I was experiencing, for the third time in 2 years, wrist pain severe enough that playing a single note on the piano was intensely painful and I could scarcely lift my backpack or a dining hall tray. I was desperately looking for some help, and the (presumably) well-intentioned rheumatologist in Manhattan charged me $300 for the advice “well, you’re the one who decided to become a pianist even though you have EDS – what do you want ME to do about it?” Subsequent reassurance from my hand therapist, Caryl Johnson, kept me from throwing in the towel for good, but that reassurance came only after some days of stewing in the prospect of losing my career, my passion and possibly the unencumbered use of my hands.

Through all this I didn’t get that EDS was directly at the root of all these joint problems. Meanwhile, two years later when gastritis left me literally writhing around, curled up in a fetal position between sets of my gig, I didn’t get the EDS connection either – who knew that the stomach is also made of connective tissue? Well, plenty of people know that, but I didn’t. And, I will reiterate, I am one of the lucky few who at least even KNEW I had EDS in the first place. In my mid-20s these connections became clearer, but I was largely on my own in finding solutions. Some of these solutions came in the form of diet and lifestyle while others came in the form of changed expectations. They say that one should live every day as if it is your last – great advice which encourages us to seize the day and be proactive about the things that are important to us. But there is a darker side to this worldview if you have tangible reason to believe that the things you value are indeed that tenuous. On a musical level I am still proud of my album Patch Kit, which I recorded with Ron Carter and Ben Riley as a fund-and-awareness-raiser for EDS. However, on a personal, emotional level this album is actually still difficult for me to listen to because at that time in my life I was so concerned that the next levels of disability were right around the corner. As such, my approach to the music was embedded with a layer of desperation, a sense that I needed to milk my piano skills for what they were worth before they disappeared. The liner notes express uncertainty as to whether this album was a stepping stone or a last hurrah, but honestly that wasn’t entirely sincere – I was pretty sure it was the latter.

My outlook has improved quite a bit in the 10 years since that record date, in no small part because the rate of my body’s degeneration slowed substantially over that time (phew!). Now I think about my future as a musician and have goals for growth instead of simply trying to cling to what I have. The “Noah Baerman narrative” seems now to be one of overcoming disability. I’m conscious, though, that “overcoming” is a bit of a stretch. I’m incredibly grateful to have worked through these issues as well as I have (with some great support and very good luck) but It would be more accurate to depict it less as overcoming and more as the fending off of the bogeyman of incapacitation. It’s possible I will continue to fend it off for another 40 years, but my body reminds me every day that it’s also possible that I won’t be able to get out of bed tomorrow morning. And I’m lucky that I don’t have the Vascular Type of EDS, for which even living to 38 would already be defying the odds.

If I were you, I wouldn’t really want to think about this either. So how ‘bout this, I’ll make a deal with you. You don’t have to imagine losing everything. You don’t have to think about my friends who have lost spouses, careers and the basic sense of being in control of their lives due to EDS. You don’t have to become a champion of EDS or any disability-related causes. In return, please simply take a moment to salute those who endure these challenges. And, if you’re willing, take another moment to share this with someone who you think might be touched by it. I don’t expect to see EDS cured in my lifetime, but if raising awareness allows a few more people to be treated with compassion and understanding amidst their struggles, then together we will have accomplished something of substantial value. Thank you!

15 ResponsesLeave one →

  1. dear noah,
    thankyou for this brilliant and accurate bit of writing – fellow hms/eds person myself – and i’m a musician. i’d love to keep in touch/make some music with you one day!
    best,
    fiona branson

  2. Sarah

     /  May 24, 2012

    You have said everything I feel beautifully. I need to follow in my 14y/o’s steps and just live to the fullest. She has EDS III and Long QT (the Long QT might have been completely missed had she not had the EDS, so I can’t be TOO upset about EDS) and I have to remind her that she does have limitations. She plans to continue to play (flag) football for her school and basketball. We’ve come to a compromise, if she continues to have mild symptoms and doesn’t get injured and her PCP and cardiologist are ok with her playing, I’ll allow it. I also feel that EDS is VERY underdiagnosed. I work in a doctor’s office and was converting charts to EMR and I really wanted to go tell their doctors, “your patient has EDS”, but I refrained ;-) I often feel that I’m the one teaching my daughters’ doctors and mine about EDS, they don’t know much about it! It was my doctor’s PA who dx me, she’s not there anymore and my doctor didn’t know anything about my condition!!

  3. paula rabin

     /  May 24, 2012

    beautiful writing my fellow bendi

  4. Mags

     /  May 25, 2012

    Well said, Noah. So glad Patch Kit was not your last hurrah. Blessings to you and your family. Mags

  5. Noah, your writing about EDS is profoundly moving and important on so many levels, and therefore to the widest range of people challenged by some form of loss. Which is to say: Everybody. If the challenges of loss – or threat of loss – can also serve to deepen the soul’s quest to “know thyself”, then you are the philosopher prince for me! And one with the finest songs in his heart. Heck of a gorgeous concert last night!

  6. So very well stated, Noah. In spite of your EDS, you certainly have the ‘chops’ both with the pen (prose and music) and with the piano (and synth and guitar) to express your deepest emotions. I do salute you and others in your situation. I’ll do my part to spread the word on the radio and my podcast on this weeks show and as often as I can.

  7. Shona

     /  May 25, 2012

    Here is the most important part for me as challenges come in many forms.
    “…..but if raising awareness allows a few more people to be treated with compassion and understanding amidst their struggles, then together we will have accomplished something of substantial value.”
    I had no idea about your ear issues, I can empathize somewhat with this one.

  8. So moving and profound, Noah – and far beyond the specifics of EDS. We too often make assumptions and take things blindly as we blunder through life, without full consideration of both our blessings and our challenges….and those of others. Stay on the path, brother.

  9. Noah, having you as a friend is such a blessing! Thank you for your strength, your dedication, and your inspiration to persevere and to teach us what that means as well.

  10. Amanda Morris

     /  May 27, 2012

    My 6 year old niece and I are the only ones in our family with an official diagnosis of EDS so far (our doctor’s can’t decide if we have Type I or III) and it’s both comforting and heartbreaking to know that I share the struggles of this disorder with her. Her mom, my sister, most certainly has it as well and has yet to have a doctor give her an official diagnosis. None of this would even be possible if it weren’t for my former sister in law, who noted Olivia’s eye problems (blue sclera, etc) due to her training and expertise as an ophthalmic technician working for a retina specialist in town or if her pediatrician hadn’t noted her “doughy” skin and hip dislocations. How the two of them (independently, no less!) came to this conclusion is a miracle and I can only hope to pay if forward by providing my own patients with the tools necessary to get to a doctor that can help them put it all together. I don’t want anyone else to suffer with EDS, but to feel the pain and burden of the symptoms without knowing why is a feeling I wouldn’t wish on anyone. How many times has each of us (before our diagnosis) been told that we were complaining too much, exaggerating the severity of our pain so we could avoid a task, or devoting less effort than “we should” without knowing that all of these symptoms fit together in a complex puzzle making up this seldom-understood disorder?

    Thank you, Noah, for using your talent as a musician to share your story so beautifully and for raising awareness of EDS so that others might solve a riddle that has plagued them their entire lives.

  11. Dear Noah,
    Thanks for writing this piece. It is very moving, not only in the anguish it describes, but in its utter openness. As a complete stranger, I am so grateful to you for just putting it out there in such a blunt and eloquent way.

    Wishing you courage, good luck, and oceans of delicious music for many
    years to come.

  12. Gregory M. Orban

     /  May 28, 2012

    Noah, I must tell you what a great man you are. A similar struggle that began at Rutgers hit me at the end of my sophomore year…I tell you that I was unaware of all the things going on in my life to get me to a higher spiritual realm. It is said that usually mental illnesses manifest themselves( like Bi-polar disorder, depression ) around the end of adolescence(age about 18-25) and basically leaves one deserted with a world of confusion and lost motivation, hopelessness, and self-harm, sometimes ending with suicide. I personally know that I have lost everything due to mental illness( paranoid-skitzo ) I lost all ability musically, I lost all my old friends from high school, I was doped-up on four different anti-psychotic drugs. I was trapped with guilt from reoccurring awareness of my wrong-doings from my youth. I was into the Connecticut Hardcore-punk scene, so I had many experiences of violence, sex, and drugs. Really, some sleaze-bag things I did, but there is a light that is the way to get back to life…I saw in my sins what was right and wrong, and slowly after two-years of deep thought and discipline, review of what I had to do to get back into living a decent life. I don’t drink, I don’t smoke, I try not to be sleazy with women or thoughts of them. I eventually went back to work, my father got me a job at NBC, where he worked in Manhattan. My life blossomed once again with joy and the spirit of youth. I got back on the trombone, I even got my degree in jazz studies at West-Conn-State-University. After I left Rutgers it took nine years to pick up the pieces and I finished, although I wanted to quit so many times, I persisted. I find it hard to play anywhere…and I wish I could have a steady gig, but the cost of living is too high, I now work at the United Cerebral Palsy Association, with people who are mentally and physically disabled…So now I can see those who have it harder than all the rest. They can’t even use the toilet on their own!!! So what I want to say to you, is that life is short and God, or whatever you believe in as the be-all end-all of planet earth, loves us, and wouldn’t put you through anything you could not handle. We’re just souls in the flesh, and this flesh really can be a total drag…but don’t give up Noah, I know you are a great man(and hey!!Nobody knows the trouble I’ve seen!!! I may not know what trouble you’ve seen[excellent moving performance!!] but I hope we can hang out sometime and enjoy “war-stories.” I hope all the blessings and joy will find you in whatever you do…OK??!!! -GrEgOrY

  13. Lizby Chappell

     /  July 8, 2012

    Hi Noah
    Just found you and your blog and you’ve inspired me to start playing the piano again. I’m a fellow EDS suffer and very hypermobile with especially bendy fingers which sometimes made it hard to play what I wanted to play! Thanks for getting our condition out there and talked about.
    Best Wishes
    Lizby

  14. Dot Frenette

     /  August 8, 2012

    Hi Noah,

    You are a very good writer and I appreciate you trying to get the word out on EDS.

    My 25 year old son was recently diagnosed with EDS4-Vascular after a dissected artery. I can only imagine what he thinks about and how he handles the thoughts that life can end at anytime. Now I understand we all could be gone tomorrow….no one is promised another day but to have a medical condition that you will never know when you could have an issue must be difficult, at best, to deal with. I am so very proud of my son since he is showing a very optimistic outlook on his life and is enjoying it when he is well.

    Not having anyone in our area who really understands this syndrome, I really latch on to folks like you who have it, are living with it and are becoming better people because of it. Thank you for sharing your thoughts and feelings……your writing helps me.

    I will keep up with you through your blogs and I wish wonderful things for you and your family.

    Dot

  15. Karen

     /  August 15, 2012

    Hi Noah,

    I NEVER comment on blogs and such but I came across yours and really felt compelled to say something. You really are not just an inspiration as a writer, but as a musician and overall person.

    I recently was diagnosed with EDS and have found it nearly impossible to find information from doctors and/or understanding from those around me. My rheumatologist suggested I get tested for POTS and dysautonomia, which I now have been diagnosed with as well. I’m sure you’ve been through the testing as well, but I had no idea POTS apparently has such a high correlation with EDS and causes so much of the fatigue and additional symptoms! But if for whatever reason you or anyone reading this has not yet been tested for dysautonomia/POTS and/or other apparently related syndromes and disorders we should all be aware that there is a strong overlap between them all. Maybe treating one will help the other!

    Granted, I haven’t exactly gotten any results out of the initial medical trials, but seeing the great things you’ve accomplished and knowing that there ARE things to be done instead of hitting up against a wall gives people like me hope. So thanks for speaking out and helping spread awareness of EDS! :)

    Thank you!

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