It was a humid August afternoon in 2010 when I learned that I had Sensory Processing Disorder (SPD). I sat like a giantess on a small stool spilling over a tiny child’s drawing table facing my new occupational therapist. I loved everything about her office – the soothing blue paint on the walls, the tangle of equipment, even the soap-shaped deep-pressure brush she pressed into the palm of my hand. Hey babycakes, I thought to myself, there’s a place for you after all!
This positive speak surprised me. It was in direct opposition to the way I’d treated myself most of my life when it came to my differences. While I was (am) bright and bubbly on the surface – always quick to crack an absurd, witty joke or let a wide smile spread across my face – my inner monologue was filled with hate and fear. Stop being such a weirdo and just do it already, I’d think as I struggled to leave a safe space and face the cacophonous, blinding, undulating streets of New York City. You’re useless, you can’t handle anything, I’d ruminate, slumped down and hunched in tears as I missed yet another family outing, you embarrass me, you are an embarrassment to everyone. And then there was the speaking I did about and to my related anxiety — the pleading, the desperation. Please let me get through this without losing it, I’d whisper as I transferred from bus to subway to train on the way to work. Please leave me alone for once. I can’t live like this.
On the day of my diagnosis, I had this sense that my SPD was finite, that the nameless burden I’d been carrying around for 27 years would slip from my shoulders, like a cape to the ground, and I’d feel lighter, freer. I didn’t have to be scared anymore. I didn’t have to hate the golden-brown-haired woman with kind, green eyes who stared back at me in the mirror. She was aces in my book; she finally had a name for her foibles.
It was about a month into my diagnosis that this new image of perfection was shattered. It didn’t matter where I was standing or what I was trying to do, who was flanking me or the time of day – I had a sudden sensory overload and went into the all-too-familiar shutdown mode. My body detached from my surroundings and I felt scared and ashamed. Where’s your special diagnosis now?! I screamed from within, Who cares what it’s called if you can’t do a single thing to make it go away?! I knew the truth – I wasn’t a young child and my brain wouldn’t rewire quite the same way as a child’s might, if at all. My negative internal voice went from punishing to bullying. Now, when I “failed” at an activity, I essentially “failed” twice — because I was once incapable and because I was still incapable, in spite of having the right diagnosis. My confidence plummeted and my anxiety heightened.
In psychotherapy, I worked on reframing my thoughts – taking them, turning them on their head and looking at them from a new angle.
There are so many things I still can’t do! I’d say aloud during a session.
Ah, my therapist would say, but there are so many things you can do.
I’d continue. It’s so scary though when I can’t process the sensory world around me.
Scary, yes, she’d respond, but you can’t be hurt, not in any significant way.
In time, I internalized this new voice – this gentle, positive position on my status in the world. I allowed myself to believe in the possibility that my perceptions could change how I feel. I worked on acceptance. No, my SPD wouldn’t go away. I’d probably live with the agitation and discomfort, the deep and inexplicable internal pain in the face of fluorescent lights and falsetto voices for the rest of my life, but I’d remove my own internal stigma to face personal sensory challenges and celebrate my most complex achievements – all without passing harsh judgment on myself and my neurology. If I was going to live this sensory life, I realized I had to make peace with who I really was, SPD and all. Maybe it’s not such a bad thing to be so sensitive, I thought to myself, to notice things that others don’t, to read people and situations without words, to feel deeply and to care deeply. Maybe I can cut myself some slack. I was owed that much.
If I could go back to the day of my diagnosis, I’d tell myself to be patient – that in time, I really will learn to love who I am regardless of my diagnosis – and sometimes even especially because of my diagnosis. After all, I wouldn’t be me without my SPD.
For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.