I had a different piece of writing planned for Ehlers-Danlos Syndrome Awareness Month this year, but reeling from a mass shooting (and the gut-wrenching awareness that anyone reading this will have to wonder even which one I’m referring to) has turned my head around and made me reflect on the nature of suffering as a societal phenomenon. A physical disability like EDS is so often a source of isolation (among its many challenges) and yet as I watch so many people trying to reconcile their grieving, I think about the capacity we have to connect in the face of suffering.
When I attended my first Ehlers-Danlos conference in 2002 in Winston-Salem, the visceral experience of feeling solidarity was something I had never before experienced. I was very fortunate to have some sympathetic, supportive people in my life, but up to that point, at age 28, I had met a total of one person (and zero adults) with an EDS diagnosis. Walking into a room of people navigating similar experiences was overwhelming. These were folks who “felt my pain” in a closer-to-literal sense without needing to speculate about what it’s like or to wrestle with their own impulses to avoid the discomfort of facing and understanding someone else’s suffering. I remember some of the concrete things I learned in presentations and workshops that weekend and I remember many of the people (a good many of them, particularly those with the Vascular Type of EDS, no longer with us) but by far the most vivid memory is of that palpable feeling of being surrounded by those who truly understood my struggles.
Not long before that I had written the EDS-inspired music for “Patch Kit,” probably still my best-known work, which would be recorded only a month or so after this conference. The basic notion was that we all have our struggles and need to cobble together our personal “patch kits” of coping mechanisms, whatever combination of self-care practices, supportive people, adaptations, and crisis mitigation strategies that might entail for each of us. By the nature of the project and its goal of drawing attention to EDS, I was focused on my own disability-related patch kit. At the same time, though, I started thinking about the inescapability of suffering and the untapped (or at least under-tapped) potential for solidarity that lies therein.
The inescapability of suffering is somewhat self-evident. None of us makes it through this life unscathed by hardship, loss, or (if we live long enough) physical challenges. The phenomenon I first began to notice at the time, though, was the way we tend to languish in suffering-silos. Because my challenges take on a different shape than yours and yours take on a different shape than anyone else’s, we each tend to suffer in isolation, feeling abandoned and inadequately understood. That is a recipe for suffering, as at best it mutes the potential for deeply feeling the support of others and at worst it snuffs out any access to that support since others dismiss the struggles to which they can’t personally relate.
Think about that for a moment. We are all quite literally united by the challenges of life and yet so many of us are isolated by the ways our challenges appear to differ from others’. This phenomenon is pure insanity and yet generally accepted as an unfortunate but inevitable aspect of the human condition. Why is this so?
Well, I’m no social psychologist (I don’t even play one on TV) but there is one cause I have managed to identify and informally study over the twenty years that have elapsed since I started thinking about this. Suffering is hard. Many of us are so afraid of our own potential future challenges that it is unsettling to face someone else’s current ones, lest they serve as a crystal ball foretelling the manifestation of those fears. And many of us are sufficiently overwhelmed by our own present-moment struggles that we feel we might burst if confronted with someone else’s. From either of these perspectives, we are fragile, having a tolerable life condition is tenuous, and facing another person’s suffering carries the risk of exacerbating our own.
But what if that’s not true? What if opening to others’ suffering actually offers a pathway to some degree of both personal and societal liberation?
While folks with Ehlers-Danlos Syndrome have continued to be a vital part of my support structure and have reinforced the need to have at least someone in my life who possesses an intimate understanding of my specific conditions, I have also learned a lot from and received tremendous nourishment from able-bodied folks. Some of this manifested through the gift of musical colleagues who have respected my challenges and limitations and matter-of-factly supported me in ways that range from subtle (offering to help carry gear to the gig) to highly consequential (working, without criticism, to set up parameters with me whereby whatever collaboration we engage in won’t put me at excessive physical risk). Some of it manifested through other struggles.
For example, about ten years ago I “came out” as being a survivor of childhood sexual trauma. Now that I’m so far removed from that moment of extreme vulnerability, it is fascinating to look at the varied responses, which I can lump into three broad categories. There are those who simply couldn’t handle (or maybe chose not to handle, there’s no way to know) being in that uncomfortable space, and the passage of time just brings me more compassion for that. There are those who revealed (or had previously revealed) that they too were survivors, creating a certain type of instant bond that comes from a shared life obstacle. Then, finally, there were those who did not share that experience but were compassionate, respectfully inquisitive, humble in their presumptions about the minutiae of my situation, and forthright in their broader support and presence. I came to realize, as I had already grown to with EDS, how indispensable this facet of my own support structure was. This also more clearly illuminated my existing sense of how important it was for me to be that sort of person for others.
Only a few months later the world was rocked by the Sandy Hook school shooting, my own perception of reality among many permanently shattered along the way. In the ensuing days and months and years I both received and gave support and leaned, at times heavily, on people who could only imagine losing a loved one in this way (and who had to be rather brave to even allow for fleeting moments of entertaining that possibility). Somewhere along the way I started to lose part of my sense of self, which from a Western line of thinking is a dangerous thing but was in fact spiritually liberating. Specifically, I began to detach from the binary notion of giving versus receiving support as something akin to a series of financial transactions. This is not to say that I became oblivious to showing up when needed and reaching out when depleted, but on a broader level I mainly felt privileged to be part of a flow of supportive energy, no more or less privileged based on the exact nature of my participation in that moment.
Tempting though it may be to belabor the point by detailing every subsequent hardship that I have experienced personally or aimed to support loved ones through, I’ll just say that the privilege of participating in the universal solidarity of suffering has blessed me many times. I don’t mean to sound glib about the corresponding hardships, but insofar as we accept hardship as a part of life, I have found the nourishment of leaning in and connecting to outweigh any additional pain. I’ve long since stopped keeping inventory of where I’ve fit into the supporter/supported duality, instead simply feeling gratitude every time that sort of open exchange can occur, whether it’s natural and organic or whether it requires some coaxing. I’m grateful for the exchange itself and grateful for every reinforcement that my heart and others’ hearts are deep and resilient. I’m grateful for a life and for relationships that rebut the idea that one’s own suffering increases proportional to one’s exposure to others’ suffering, an idea that withers in the face of the redemptive power of connection.
Life is hard enough without the further challenge of unnecessary isolation, and I invite anyone reading this to consider how connected we truly are and how we might bring that awareness to bear in our interactions.