It was my first morning home from the hospital that I noticed it. A barely there drop of spinal fluid that shot out as I exhaled and sat up. “Aw crap” I thought to myself as I rummaged through the bag of undies and post-surgical instructions I had brought back from the hospital with me. I found the paper with the nurse practitioners email and through bleary crusty, mildly drugged eyes told her the leak was there again. I signed my email “Leaky McLeaksAlot.” She LOLed at that one.
Between the two NPs and the neurosurg they hoped it was “postoperative fluid” and I humored them even as they moved my post-op appointment up by a week and insisted on a repeat CT scan. Those are not the actions of a group off docs worries about nothing, but hey, they want to have hope, who am I to squash it? The leak has gotten progressively worse since I emailed them and franky my face is raw from wiping CSF away. I’ve run out of leaky faucet jokes and frankly have spent several of the last few days crying and ranting about how I should just accept me for me and I feel like I am trying to convince myself as much as I am trying to convince everyone else. But it’s not the physical I am having trouble accepting. I’m totally okay with having a messed up body, though I’ll admit I am tired. It’s the emotional that’s thrown me. I have no idea where I stand emotionally anymore, my identity is a mixed bag of contradictions, control, power, insecurity and fear. I don’t know who I will be and with who and how and for how long and it’s goddamn scary.
I have always been a person who thrives on control, on knowledge, on being able to confidently speak to a situation. Losing physical ability robs you of the opportunities to do so and leaves you a bit listless. But I realized something tonight while I sat on the couch and watched my dad tear up at America’s Got Talent of all things. I’ve got love. I’ve got family love. I’ve got family of choice love. I have friend love. I have contradictory love, I have problematic love, I have complicated love, I have love that I hate and love that I love and love that scares me and if I can get out of my own way for a moment I even have self love.
That’s not easier than control. But it’s more beautiful.
So here it is, I am “recovering” but I’m not really because I’m leaking, but my pain is under control and I’ve gotten to do fabulous things with my family and see my friends and share in love. And I’ve even gotten to cry my little eyes out. So I am a bit haggard, a bit grumpy, and totally out of control, but I am deeply and profoundly in love with all of you.
Peace and love,