Sensory Processing Disorder was not a phrase I’d ever heard tossed casually into conversation between sips of merlot at a cocktail party. How about the weather we’re having this month? Where are you working these days? How about that misunderstood, silent neurological disability you’re battling? So when I was diagnosed with SPD back in 2010 at the age of 27, after decades of misdiagnosis, I found myself adrift, thankful that my lifetime of difficulties — those picky quirks and particular oddities that made me rigid and anxious — were more than just this New Yorker’s penchant for personal perfection — and yet alone in the sphere of a new diagnosis, one that a quick Google search revealed was meant for the toddling, drooling set and not for a grown woman in her adult life.
I vacillated between the two extremes at the time — the relief of knowing my struggles had a name and the loneliness of (seemingly) being a sole traveler along a new path. In free moments, between learning how to properly employ the Wilbarger Deep Pressure and Proprioceptive Technique (my favorite sensory tool!) and starting my Master’s program in mental health counseling (a result of my inner struggles), I scoured the Internet for anything I could salvage and use on my journey. Most of the articles, books and blogs I came across were written for parents whose children had SPD. Although it was heartwarming to see I was in good company when it came to fluorescent lighting and haphazard sound-causing chaos and confusion, I still felt different.
No one is more different than an adult with SPD.
Growing up, we were called “sensitive” and “unusual” by teachers and peers, and we were often misunderstood and mocked when we expressed our unique needs. We didn’t have the words to explain we felt disconnected from ourselves and our surroundings, or to convey just how raw and scared and drained we were by the end of the day. We couldn’t explain why a soft touch on the shoulder from behind would send us into a tailspin of tears or why the smell or taste of a particular food would make us recoil in discomfort. After my diagnosis, I thought I’d immediately feel connected to a larger whole. After all, someone who is diagnosed with MS or Lupus or anything with a sponsored run-walk is immediately plugged in to a greater community, I thought. Support groups allow for catharsis and acceptance, awareness ribbons are attached to each lapel. SPD explained everything I’d ever experienced. Where was my community? Where were my people?
And then I met Dan Travis, a fellow SPD adult. If SPD was a spiritual path, Dan would have been my prophet, my sage. I call him my mentor. I found his website for adults with SPD two weeks after my diagnosis, and I immediately sent him an email like a frenetic Morse code message. “S.O.S. SPDer in need of help. Send provisions, wisdom and unyielding acceptance.”
Dan was – still is – the gold standard in human beings — the most warm and welcoming person I’ve ever met. He responded to my first email quickly, and within days, I was blissfully inundated with information and answers. I didn’t have to make excuses about my weird behavior to Dan, and I didn’t have to suppress my litany of questions and concerns. He gracefully understood each anecdote and addressed every query. He laughed with me when I described how I achieved my latest bruise and consoled me when I asked, over and over, why it had taken 27 years for me to be properly diagnosed. He taught me tricks to help lessen my symptoms and recommended tools to support me as I struggled.
He once wrote:
Rachel, you’ve had a very rough go at things, but you will make it though and you will thrive. I can tell. I am simply amazed by you and your abilities. I feel like I’ve met someone who shares my passion and focus… I really have been waiting to hear from someone who is as active and caring as you are for the SPD cause. Remember that I’m rooting for you in your recovery and therapy. I’m proud of your accomplishments every step of the way.
So Dan, thank you for your mentorship and friendship, your kindness and encouragement. You showed me what it meant to be a functioning SPD adult, and because of you, I’m now a fervent advocate and educator too. Because I met you, I’m proud to have SPD. Each time an SPD newbie sends me a message, I think of how you reached out your hand to pull me to safety. It’s my mission to always return the favor.
For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to email@example.com.