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Sunday, August 22, 2010

Celebrations and Setbacks

 I texted myself this yesterday while at a bar-b-que for dear friends:

"What are you supposed to tell someone when they ask if you're ok? There are no real words one can assemble on the spur of the moment, casually, to say, 'No, I'm not ok. I was just diagnosed with SPD, and this really is a lovely party, but my brain is reeling. The dog won't stop circling my legs and the squeak of the cooler behind me is making me antsy. No, because there are at least 20 distinct voices that I cannot track out here in your beautiful boutique back yard bursting with peach trees, and there are too many blades of grass, and I can't sit here when the air doesn't move past my skin and the sound of meat sizzling on your grill is painful.' And so I sit inside, a redundancy, for the millionth time of my life, wondering who will notice and what they will secretly say later about the unnaturally quiet, agitated-looking girl who has disappeared from the party."

I could have written this when I was a young teenager, last year, or a few days ago, but it was just yesterday, a mere three days into my new sensory diet. I found myself needing to escape the drone of sights and sounds I could not control, the spin of people and beer and birthday celebrations, for the quiet solitude of indoors and the whir of a floor fan. As I texted these thoughts to myself to share with you, I noticed my mental patterns as well, the ones that will take even longer to break. Accusatory, I got angry, split off,  intolerant and disgusted to be associated with myself. In response, I became teary-eyed and hopeless. We are a sorry lot sometimes, me and myself, used to beating us up internally for these formerly meaningless and quirky behaviors that have been out of our control. For someone battling an unknown neurological issue for decades, stigmatized for the things I couldn't "handle," this unhelpful behavior and unnecessary thought pattern is just natural, par for the course.

But then something changed. I got sick of it all, of the habitual responses, of hating myself momentarily; me: sharp-witted nut with a huge passion for people and bright smile. I stopped to remember the things I had witnessed in the past three days: the diagnosis and the hopeful OT, the brushing and the first sips of peace, the look of astonishment on my psycho-therapist's face when I stepped calmly into her office, making Josh laugh in disbelief, the excited embraces from my parents, the boundless support of some old friends. I reminded myself that I wasn't to blame for what I have always perceived to be my Mess. I told the bully to just shut the hell up.

I stepped back out into the evening, a bit skeptical, with dessert in hand and banter on my tongue, sat down in the chair I had all but abandoned a half hour before, and blended back into the party. It was surprising and seamless. The movement had slowed down as party-goers lounged, beer in hand, talking in groups. The dog paused for respite on a blanket before weaving her way back toward my waiting arms. I posed for a series of ridiculous photos. No one was the wiser.

I am impatient now more than ever, pacing back and forth in my brain, fingers crossed, hoping for a cure-all. I know this "healing" process comes with no lifetime warranty, and there is no guarantee that all of my processing difficulties will go away, leaving me happily rewired and set for a perfect future. Yesterday's setback gave me hope, in a backwards manner. A mere three days into treatment, I was able to get beyond myself, to start shaking off the cloak of stigma and upset. Baby steps are monumental moments after all.

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