Belonging

The other day I was hunkering down to wash a couple days worth of dishes which had grown into several daunting stacks of varying heights--a city skyline of plates, glasses, & kettles.  Before diving into the mess,  I queued up an episode of This American Life entitled "Tribes".  It was an interesting exploration of the elaborate ways humans create and sustain social groups and the reasons behind their formation.  The story which stood out to me most keenly was that of a woman who experienced a pleasurable tingling sensation in her head when she heard certain voices or sounds.  She had kept this to herself well into her adult life, privately indulging in the calming euphoria brought on by whispers and low, gentle speech by watching the painter Bob Ross, The Home Shopping Network, and internet videos of soft-spoken women narrating their jewelry collections.  It was through the internet videos that she learned that she was not alone in what she was experiencing, that is had a name. ASMR- Autonomous Sensory Meridian Response.  Both the physical sensation she experienced & the extraneous triggers which brought on the tingling were well documented.  Suddenly she was the member of a very unique tribe, as opposed to what she had suspected before--that she was miswired, that something was wrong with her.

I've been thinking a lot about the importance of belonging these days.  Whenever I feel I'm on the fringes of life I get well-timed reminders that I am not alone.  Those reminders come quite often from my trusty port in the storm-- my Ehlers-Danlos Group on Facebook.  I'm absolutely guilty of being a fair-weather member, but in the reverse way that such a relationship generally works.  When I am at my worst I light up that board like no other--posting my own experiences and taking time to weigh in on what everyone else is going through.  But when my flare-up subsides, so does my presence in that community.  And that is something I'd like to work on.  But it's so easy to ignore that part of who I am when I'm feeling better.  It's so easy throw myself into the busy business of living during those precious times when I have the fortitude.  And I know that my fellow EDSers understand this because that is the nature of the beast.  Their understanding of the wildly unpredictable ups and downs, the long stretches of presence and then absence and then back again....that is what makes belonging there possible.  We live in a world of tight schedules and exact appointments and kept plans.  Cancellations and rescheduling and bowing out of it all for an indeterminate period of time are not options most times & are not understood or well tolerated even in social situations.  We live in a world that doesn't allow for time-outs, respites, or meaningful recuperation.  But a person with EDS or with any chronic health problem needs these breaks desperately.  The idea of a professional sabbatical is laughable these days; it's practically a myth.  And when it does happen, it is considered a luxury, an extravagance.  Now imagine trying to justify frequent and incalculable down-time for a health condition that will last the rest of your life.  The current system and the people operating within it are not able to adjust or make allowances easily.  And this results in frustration on both ends, and often in feelings of guilt on the part of the person with health issues.  The cycle is endless, which is why being a part of this group is so important to me.  I will be reliably unreliable.  I will show up haggard and hurting, like a drunk stumbling home after a particularly frenzied bender.  But there is such comfort in knowing that I will be welcomed and tended to.  I'm an erratic, mercurial basket case who comes bearing pain and compassion and humor and ragged shreds of hope.  And I belong.