Purging


I was in love when I was diagnosed with systemic mast cell disease.  I was in a very stable, long term relationship with someone who rubbed my back when I threw up and commiserated with me when I slept for days.  I knew the statistics about chronic illness ending relationships but I never worried about it.  Everyone thinks their love is exceptional, and I was no different.  It didn’t even occur to me that I might end up alone.
I did.  It fell apart fast last spring, when I needed a lot of help.  It was shocking and painful.  I hadn’t expected it; I wasn’t ready for it.  I had a brand new colostomy and a broken relationship that never recovered.
This last year was the hardest of my life.  I tried hard to salvage, to find the love we had once had, but it was obvious that I was the only one who wanted that.  My disease was too much for him.  And this whole life that I had had, with its hopes and dreams for the future, eroded before my eyes until there was nothing left but old cards and pictures stored in a box.  I was alone. 
We forget sometimes that having a partner doesn’t always mean sharing the burden.  It means having help, whether or not you use it.  But you need to be able to take care of yourself.  It’s harder that way, and lonelier, but in the end, it is your own responsibility to stay alive.  There is a grim satisfaction in the fact that I am still alive, in no small part to my own force of will. 
I will never be as naïve as I was before.  I will never again think I’m exceptional in this way.  This stuff is hard.  Not everyone is cut out for it.  If I had a choice to deal with it, if the roles were reversed, knowing that I would have stayed is small consolation.  It feels like losing.  It feels like mast cell disease robbed me of something that I loved so much that I have to remind myself that the disease didn’t really do the robbing. 
This year has forced me to be tougher, work harder, be smarter about my disease and my life.  Yes, I have a lot of help.  I have an amazing support system of friends and family.  But in the middle of the night, it’s me looking for the occlusion in my IV line, taking my blood pressure, popping emergency meds and taking out my Epipens.  I am the one fighting for the things I need, organizing everything and ensuring that my needs get met.  And that’s okay.
I am the one who takes care of me.  And it’s harder, and more painful, but I never let myself down. 
I am my own last line of defense. 

2 Responses

  1. Ariel Souza May 13, 2014 / 9:00 pm

    Your strength is inspirational. This is your legacy. Your greatest strength is your greatest weakness, but in the end, what is left in this unbalanced equation, is your will and your noble spirit that shines brightly through the darkest of nights. These words will be here long after the pain. Never stop fighting.

  2. Sean-Michael Gettys May 16, 2014 / 5:52 pm

    I am sorry you had this experience. It is beautiful to see how resilient and strong it has made you. Thank you for sharing.

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