Sunday, October 6, 2013

The Body is A Haunted House - Ableism and The Long Night of The Soul

I opened this space with the intention of documenting my truth especially where it intersects with the multiple and beautiful communities I exist within and around.  I opened it because for the past several years I have been having tremendous difficulty writing.  I'm not blocked.  I have ideas for days.  I have at least three books in my head.  You know how many books that is in real life?  Writers know.  It's zero books. A book is only a book once it has room to spread out on a page, and I have not been giving my ideas and words that luxury for a long time now.   Any writer worth her keyboard will also know that if I'm not blocked I must be completely terrified.  I am.  I'm scared of the blank page.  I'm more scared of what I fill it up with.  I'm terrified, honestly.

Here is what happens to folks with big "S" kinds of stories, the ones with stories that make you say to yourself: "Glad that's not me!"  People  flee you or they put you on a pedestal.  They call the pedestal "strong" or "brave" or "amazing," no matter what they call it they never seem to understand how truly impossible it is to stand in that one place for a whole lifetime.  The people who flee, even in minor ways, say with their actions: "You're too much.  It's too hard to love you.  It's too hard to witness you.  I can't.  I can't."  This happens so often and with such high quality people that you begin to organize yourself around these reactions.  People love strong.  Be strong.  When you are not strong, fake being strong.  It is better for some people to love some parts of you than for no one to love no part of you.  Of course I'm talking about ableism, right?  Of course I am.

I live with a politicized, misunderstood disease. I live with a disease that attacks my body and my spirit and my mind every single day.  Right now my brain is hosting a huge dance party for millions of tiny, baby bacteria who are running wild over the terrain.  My brain won't regulate my body temperature- and that is problem when one lives in the South and also has a severely infected heart and lungs.  My brain forgets even the most basic directions when driving to places I've been a thousand times before.  My brain drops words, forgets grammar, it stutters.  It fails.  It makes my arms and legs shake.  It makes my head tick back and forth.  Worse than any of this is the wide, blank, terrifying void of depression it ushers into my consciousness. And running up behind it comes depression's best friend: shame.  I forgot to mention the shame, huh?  The collective weight of 8 years worth of well intentioned:  "But do you exercise?"  and "Maybe if you just tried harder" and "My uncle gave up gluten and completely cured his own brain tumor why can't you do that?"

We are so divorced from the concepts of pain and mortality - so obsessed with longevity and happiness - that as a culture we cannot allow for the basic and necessary understanding that to live is to suffer.  To live is to decompose. These lives of ours are nothing more or less than great, awe-inspiring, streaks of stars shooting across the night sky.    And because we fear this we turn away from it.  We turn away from the living things whose stars are close to being extinguished.  We do this to spare ourselves pain.  It doesn't work.  The only thing it does is rob us of connection during the small moments of time we are allowed to shine for each other.

I write about this a lot and yet there are so many things I keep to myself for fear of being abandoned to the "too hard"  "too much" pile.  No one ever comes back from that pile.  Humans are nothing if not definitive evidence that survival of the fittest rules the natural world.  There are weeks and months and years when I absolutely do not live up to the "Strong" I've been anointed with in my holier and better moments.  And the shame of that sends me spiraling even further.

In these past eight years this disease has taken from me the only place in the world I've ever felt at home, three lovers and big loves, countless "friends", all of my money, my ability to house myself at times, my ability to eat at times and access to any kind of health care that might save me.  Most days I want to grab a bat and smash everything in sight until the unfairness of this stops sitting on my chest threatening to drown me.  I am most definitely not saying it is unfair that I am sick.  I am no unicorn or snowflake.  Eventually every one's body gets sick.  Unfair because right over the horizon...past big pharma and their tanks full of money and Blue Cross and their army of lawyers and a handful of corrupt doctors lying on the sidelines is medicine that would likely put me back into the game.  On my very best days it feels like I have the flu or mono.  Those are my *good* days.  Those are the days I have to get 80% of my necessary life tasks done.

On my hard days I scour craigslist for guns for sale.  There are weeks sometimes when the only comfort I have is the fantasy of ending this nightmare.  Nights when the only thing that keeps me from pulling out my own hair is to graphically imagine the taste of that gun.  The way my tongue would curl around it.  The way I would wait to see if it started to dissolve like the body of Christ inside of me.  My body is a haunted house.  My only dreams are of deliverance.   There is a reason that people with Lyme are killing ourselves left and right and it has everything to do with this dynamic. It has to do with the strange way we fetishize some diseases like cancer, and completely ignore others like lupus or Lyme.  And when I say we fetishize or ignore the disease what I am really saying is that is what we do to the people living with those diseases.   It has to do with facing a hostile health care system at our weakest.  It has to do with standing in line for 5 hours for food stamps on a day when we shouldn't be standing or driving at all.  And it has to do with the fact that one cannot live any kind of life, let alone a challenging one, on top of a pedestal inside the community or from the outskirts of that community where we've been chased.

Part of the reason I am afraid to face the blank page is because I have been actively shamed for the work of documenting what this feels like in the desperate attempt to reach other people who might feel as alone and fucked as I do.  "Fishing for sympathy" or "Making yourself feel better by venting."  Sometimes people - sick and healthy - like to juxtapose what I do with folks who adhere to the "Stiff Upper Lip" mentality.  Complaining is for babies.  Asking for help is begging.  Anything less than an upbeat, positive attitude that constantly "inspires" the able-bodied/Enabled is weakness exemplified.

But deep down inside of me I know beyond a shadow of a doubt that this requires so much more courage than pretending I am fine.  To live is to suffer but to deny the reality of life and to force all of us to face that reality alone while in each other's company for fear of being perceived as less than is madness.  And worse; it's a lie.

On my healthy days I dream of plucking that unearned "S" right off of my chest and tossing it onto a bon fire.  I dream of being able to do that and not be chased from my communities.  I dream of not having to juggle a million obstacles every day to just arrive at the same starting line as my peers and colleagues.  I dream of my peers and colleagues committing to not being those obstacles anymore.

I don't end my life because the world is a beautiful place full of beautiful and difficult truths.  I, like you, have been sent here to witness and experience and reflect back.  This is my job and working-class bitches don't quit.  We don't ever quit.  But we do get weary and discouraged and even a little jaded.  What I wish is for all of us, myself the most of all, is to expand ourselves to let the hard  and scary enter us.  I wish I saw 70% fewer articles  about "How to be happy."   I do! I really do.  What we need is information that teach us how to be real.  And vulnerable.  And trusting.  And kind.  What we need are instructions about how to sit with our unhappiness and still be ok.

I wish for the time when I could walk home from work through the Mission with all of the freedom and curiosity  in the world.  The time when my life afforded me the luxury of writing about anything other than this - because you're wrong, shaming friend -  I hate pity.  And I am not fishing for it.  I would give my right arm to be able to write about anything other than this.  My Polish, working-class family loves the saying:  Shit in one hand and wish in the other and see which fills up first.  Indeed.  In my heart I write only love songs.  But my heart, as we all know, is not the strongest one if the world.

I have no idea how to end this and I want to stop writing it now so maybe just this little prayer:  May my chosen family and any strangers reading this find at least one part of it that resonates and makes them feel less alone in this fight.  May my beloved Lyme community receive the care and support and money we desperately need to have a fighting chance.  May the friends and lovers who do show up know, know, know how rare and precious you are.  May you know how many lives you save by being able to stay present with other people's suffering.  May all of us open - may our consciousness develop and broaden and grow in love to incorporate all of the pain and pleasure and messiness of the great living world we call home.  May there be many future days during which we are nothing but grateful we never picked up that gun or swallowed those pills.  May the madness end.  May compassion reign.  May love win once and for all.   Please God let me be brave sometimes but do not make it a prison sentence.  Let me ebb and flow as I was meant to.

And so it is.  <3


  1. The feeling is real mutual Shannon Barber. Thank you. <3 <3

  2. Oh, this is gorgeous. So true. So right.

    I am multiply disabled and in the throes of complex PTSD. I relate to so much of what you've written, particularly about the fetishization of HAPPINESS! HAPPINESS! and the denial of suffering as something shameful and Other.

    One part of your piece, in particular spoke, to me: "And it has to do with the fact that one cannot live any kind of life, let alone a challenging one, on top of a pedestal inside the community or from the outskirts of that community where we've been chased." Yes. Yes, yes, yes. I have been on that pedestal. And I have been chased out and shunned. Neither is a place I want to be. Neither is a place that anyone should be.

    Thank you for this. A million times. Thank you.

  3. Thank you for sharing what's in your heart. The fear of being too much.... of people not knowing how to be with suffering. Of not knowing how to be with my own suffering. I feel less alone reading this, and send you love.

  4. Wow what introspection shown here. I love your writing and I love this blog.

  5. I found your blog when a friend shared "This Girl is on Fire: Queer Misogyny and the Consumable Queer Feminine Body" on FB. The power of your voice, your honesty, and your poetic heart drew me in immediately.

    "My body is a haunted house. My only dreams are of deliverance." So.Beautiful. May writing help to bring you the deliverance that you seek.