I am happy and proud to announce that I will be presenting this year at the Ehlers-Danlos National Foundation’s annual conference. This is a great honor for me and, perhaps more significantly, the fact that I am so excited about this is a great sign of how far I’ve had to come to reconcile my place in that world.
As many of you know, I was born with the connective tissue disorder Ehlers-Danlos Syndrome (you can read plenty about my EDS journey from past years’ blogs by clicking here, here and here). One unexpected and positive outcome of my struggles is that I have met some AMAZING people. There are no trends within the EDS community with regards to political ideology, intellectual or artistic interests or anything else save for the need to overcome the adversity attached to this debilitating condition. So while not everyone is amazing (any more than anyone in any other population is amazing) I have made friends who I respect deeply and who offer understanding and support that is unrealistic to expect from anybody who hasn’t been through the same wringer. It is particularly touching, then, that I have been embraced by this community and even viewed by some as a role model for having maintained my career and artistic pursuits in spite of the physical obstacles.
But here’s the shameful confession – when I was young and realized I was “different,” I longed to be accepted in the world of the able-bodied. Ironically, plenty of able-bodied kids crave the same thing in a different way (after all, it isn’t just kids with disabilities who get picked last for the kickball team). But once I got my EDS diagnosis, the relief of knowing why I was so fragile brought with it the undeniable and unchangeable reality of being different. And in this case it seemed clear as day that different = inferior. Keep in mind that for me this didn’t represent a rejection of the EDS community because I didn’t perceive that there was an EDS community. I was 24 the first time I met another person with EDS (a friend’s young daughter) and 28 the first time I met another adult who revealed having the condition (I phrase it that way as it’s statistically likely I’d met others by then who had it and didn’t realize it). As a result, my sense of identity developed with the perception that there were simply two worlds: normal people and outsiders (cripples, freaks, other assorted deadbeats), and I was damn well not giving up my membership to the NPC (Normal People Club). This was a straightforward need, no matter how overwhelming it was to keep up with other members of the NPC and even if by the standards of the outsiders I came out looking pretty good. I had no interest in being the grand poo-bah of the disabled, so I essentially rejected membership to that “club.”
Over the past few months I have surveyed people in different contexts over whether they put greater value on the level of enfranchisement in a community or the desirability of that community. Or, to put it another way, would you rather be allowed to sit with the cool kids but be relatively anonymous or would you rather have a seat at a table of dweebs and losers who look up to you? Would you rather be a role player on a major league team or an all-star in the minor leagues (minus the hope for subsequent promotion)?
The answers generally fall into three categories: 1) elite environments are beneficial and educational, so just being invited to the party is awesome, 2) all that matters is whether you can be happy, so any conducive environment (nice people, team where you can enjoy playing ball, etc.) is the best, even if less prestigious, or 3) the very notion of cool kids vs. losers is an unhealthy societal construct that is best ignored altogether. All of these answers are valid and, honestly, my own thoughts encompass the totality of all of them; any evaluations I may make about the relevance of “fitting in” are made on a case-by-case basis.
Life is not lived in these kinds of abstractions and generalizations, though. As such, all of this becomes a lot more complicated when specific desires and expectations enter the equation. If you want to belong to a group, that makes them the cool kids in your world regardless of how society perceives them. And if you are not able to belong, it hurts and most likely feels like something is wrong with you. So many of my friends and peers in the EDS community have experienced this element of the struggle that I feel a responsibility to acknowledge it. It would be more convenient to simply deny it and claim that all I ever wanted was to hang out with my fellow EDS-ers. I find this is especially complicated for those who get diagnosed later in life and thus are stuck with the two choices of slinking back into the “outcast” category or trying to assimilate in ways that their bodies simply aren’t built to allow.
My blog readers are a dedicated and ambitious bunch, so I think this is a reasonable request: think for a moment about your greatest youthful ambitions and the people whose acceptance you needed to achieve them. Maybe the ambition was career-oriented or maybe it had to do with a hobby. Maybe it was related to personal growth or physical fitness or something else primarily inwardly-directed. Or maybe it was all about the external – getting love or validation or money or whatever else. Maybe you are still driven by the same thing or maybe it’s something to view with nostalgia through the rearview mirror. The point is to think about the goals that drove you to work and dig and sacrifice and persevere . . . and tune into what sort of emotions are embedded in the goals themselves.
Okay, now imagine the moment where you are presented the booby prize, so to speak. Your ambition was to get a job with a Wall Street firm and you were offered an entry-level position at a financial consulting company in Wyoming. You didn’t get the prom queen with whom you were in love, but the neighbor who you never really thought of in that way would be willing to go on a date. You trained all year for the chance to play varsity basketball and you find yourself riding the pine on the junior varsity team.
The enlightened among us recognize that none of these things represent major tragedy. Maybe Wyoming is great and maybe the co-workers there are cool. Maybe your neighbor is a stable, reliable person with whom love can bloom in a less predictable but ultimately more satisfying manner. Maybe warming the bench on the jayvee team is precisely what is needed to learn the nuts and bolts of the game. Or maybe all of these outcomes just suck and help us build strength and intestinal fortitude and/or provide us ballast to dig in and work that much harder to achieve the original goal. From a certain point of view, these “negative” outcomes are very positive, and many intelligent, healthy people would say that this positive outlook is essential to maintaining balance and a mature outlook on life. I certainly agree.
Have you ever tried using that logic with a child, though? Children, in fact, offer some great insight into the emotional workings behind unmet expectations. Maybe it is unenlightened of me to point this out, but just because an emotion is inconvenient or lowbrow doesn’t make it less potent. If a kid is expecting a trip to Dairy Queen and it doesn’t happen, it hurts. And he cries and rages and is inconsolable, certainly not compelled by silver linings (“well, Dairy Queen is kind of gross anyway . . .”) or subpar alternatives (“here, have a Hoodsie Cup instead”). Then he gets over it.
The level of getting over it is elastic, of course, depending on a number of factors including, of course, the severity of the disappointment (getting the compromised ice cream cone is obviously not the same as meeting your new stepmom or becoming an outcast within your peer group). But for a kid to get over something requires some tears as part of full expression (and thus release) of the “bad” emotions, from disappointment to anger to a sense of cosmic betrayal over the universe’s failure to fulfill expectations. It’s pretty likely that once those emotions have been processed, the kid will take the damn Hoodsie Cup and generally move on.
Yet somehow adults feel that they should be mature enough to skip that part of the process and go directly to the conciliatory acceptance that hopefully lies on the other side of it. I’ll spare you the new-agey “inner child” rhetoric, but we all know that sometimes those kinds of emotions well up regardless of how out-of-place our intellects may find them to be.
Now, to be sure, some things are in the “easy come, easy go” category – if friend #1 isn’t free to go to the movies, just ask friend #2. But if we really want something and have invested in getting it, expectations inevitably become embedded. The parts of us that become invested in that way are not likely to warm up immediately to compromise.
The compromised version may be fine and may in fact be even better – heck, I can hardly imagine what my life would look like if I had wound up with (and was therefore stuck with) all the things I thought I wanted. But this is the perspective that comes from a place of calm objectivity, and calm objectivity comes a lot more effectively if the “bad” emotions have been processed and not just stuffed aside on account of being inconvenient and lowbrow. The biggest danger of “stuffing” those emotions is that they fester. If you’ve never fully grieved the “one who got away,” it’s going to manifest in even less-convenient ways in your next relationship (or job or whatever it may be).
I find it particularly ironic that my own path has been further complicated by my attempts to function as an able-bodied jazz musician, given that music was initially a pursuit deemed acceptable because it was safer than sports. But the physicality of the piano is no joke, and neither is the rest of what comes along with the lifestyle, whether late nights or travel. If one thinks in such terms, I lost a few years of my youth to injuries and other physical impairments, but I “lost” a few more to the utter hopelessness of attempting to forge a playing career that could even get me to the outer fringes of the cool kids’ table in that cafeteria. On some level I cherish those unattainable goals, as they have some role in my drive to attain mastery as a jazz musician, but I’m also conscious that in a saner world I could have had a realistic yet non-judgmental sense of my physical limits while still pursuing that mastery with equal vigor. I certainly will never allow a student on my watch to flounder and self-flagellate in that way as I did.
I have found my own path and after a lot of years and a lot of healing and introspection, I have learned to accept it as an equally valid path. The shards of inferiority, regret and longing remain, but they are not so sharp anymore. Part of that is seeing my life in a more integrated fashion, in which specific trappings of so-called success or failure are not divorced from the rest of my life. After all, we may imagine a glamorized version of life as a rich person or star or Kardashian or whatever, but even they have to balance that with sacrifices, compromises, the challenges of relationships and health or the inconvenience of having to go to the bathroom.
Part of my liberation, though, has simply come from giving myself permission to grieve. And in that grief there is universality, as of course virtually none of us ever get exactly what we want or get accepted by everyone whose approval we crave. And the tiny few who do experience that then come to realize that the outcome is never quite as imagined.
Some of my compatriots manage this challenge by burrowing into the EDS community (which, in the internet era, is much more accessible), thus minimizing their interaction with non-EDSers who don’t understand or accept them. I am grateful that this opportunity now exists, but in the end, I am optimistic that we will see a day where it’s unnecessary. We all want to maximize our success and we all struggle with compromises and disappointments and falling short of our highest goals and desires. If John Lennon could so poetically imagine a world with no categorizations that keep us apart, then I think I can imagine one in which we can keep our drive and ambition without the constructs that damage our self-worth along the way.
In the meantime, I look forward to getting to share some of my journey and some of my music with others in the EDS community this summer in Providence. I especially hope some of the young people in attendance leave feeling like they needn’t choose between worlds, that they are entitled to create their own communities and populate them with people, able-bodied and not, who appreciate and encourage them.
Congratulations..you will be a great inspiration to the attendees. Great piece, I’m sharing it!
one of the great difficulties about expectations is that we hold the BEST possible version of what we don’t have. for instance, we have a concept of the BEST possible normal, and don’t take into account that even normal isn’t a bed of roses. so when we are not (whether it is normal, or working on Wall St. or whatever), we imagine that the “what we’re not” is perfect. that working on Wall St. would be the nec plus ultra of financial work, where the likely reality is very different indeed. this puts an unwieldy weight on what we do have, making it more unacceptable. and children don’t have the wisdom to see that kind of ambiguity. i believe that their experiencing those disappointments, large and small, can, (especially if they have some guidance to see it) lead to greater understanding of what they do have and the value it holds.
Great point Rachel, and I’ll probably post again some subsequent year about the “idealized version” of what might have been. The subtle distinction I’m hoping to draw attention to there is the one between feeling and grieving feelings of disappointment (in order to then let them go) versus stuffing them immediately due to their irrationality or inconvenience. Which, indeed, is what parents should hopefully be facilitating with their kids!