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.     

Broke

I wish being broke was more romantic.  I wish it inspired me in my creative endeavors, namely: writing.  I wish it felt liberating.  Finally! I've shaken off the yoke of the reliable paycheck!  Alas, this is far from the case.

To clarify, I use the word "broke" because I am lucky enough to have a fiancé who can take care of me.  I have a roof over my head and food to eat, and even Netflix! And if somehow that fiancé were to disappear, I have generous family and friends who would doubtless take me in.  A lot of bad things would have to happen to a lot of good people for my safety net to fray and break completely.  And this is the primary distinction I make between "broke" and "poor".

I'm sure I've written about losing my fulltime job due to chronic health problems in previous posts.  It was quite a blow, but it wasn't all bad.  After all, the job was exacerbating my symptoms and turning me into a sobbing basket-case, and aside from that, I just really really really hated everything about the gig.  After some intense initial turmoil upon losing that job, I secured unemployment and some charity healthcare through Wheaton Franciscan that covered my doctor's visits at 100%.  I even found a somewhat affordable way to purchase my prescriptions through Med Advocates.  There were resources for me where I had feared they would be nothing.  But now, I've exhausted that precious unemployment benefit and my Community Healthcare has expired.  I have applied for the Government Healthcare, but I make too little to afford even the least expensive plan.   I have been informed that I qualify for Badgercare, but it will be months before that is in place for me. 

When unemployment ran out, I understood that working 5 hours per week teaching water aerobics was not going to cut it as far as paying my bills went.  I inquired about picking up some hours at the front desk to supplement my meager income.  For the past month and a half, I've been working a whopping 15 hours/week at the YMCA.  The water exercise classes are generally well-tolerated, but I still have to call for a sub occasionally on high-pain days.  The desk work has been so-so.  The first half of my 4-hour shift is pretty ok, but the last 2 hours get progressively worse pain-wise and with my joints coming out of place.  It becomes difficult to smile and make pleasantries with the members as I find a locker key for them or return their card.  It's such a simple, straightforward job and I feel foolish and pathetic struggling with it.  As the pain escalates it becomes harder and harder to quiet the voice in my head reminding me: "You graduated from college and you are struggling with a minimum wage job meant for high school students.  You need to work these hours to pay your bills, and you are leaving work because of the pain?  Who is going to pay your bills, Tracy? Who?  Dion?  He's already paying for everything.  Can't you just suck it up?  Oh great, you're crying again.  Wonderful.  Everybody has to drop what they're doing and do your job now because you're crying and have to go home."  These thoughts and much worse echo through my head as I trudge to my car and somehow drive home, knowing if I can just get under those covers I can cry myself into the sweet oblivion of sleep.

As I'm writing this I'm saying to myself: This.  THIS is why I don't write anymore.  Because I feel so sad and guilty and worthless that this is all that comes out.  There is no message of hope.  I have nothing particularly interesting to say.  It's all gloom and doom with feelings of guilt for not "counting my blessings" when so many people have it so much worse.

I don't know.  Maybe if I keep writing about the miserable stuff I can type and cry my way to the other side where I can see the entire spectrum of life and humanity.  The bad and the good and every single thing in between.  I'd love there to be gentle nuance and openness to varied voices and perspectives again, not this tunnel-vision of despair.  Because it's not just inaccurate, it's BORING. 
If any of you are still reading this, I ask you to bear with me.  I think there is still something bright and promising inside of me and I'm trying to coax it out.  But it scares real easy.  And I can't really say that I blame it.