Now that SPD adults are speaking out more often, we can work together to tackle the challenge of life events great and small. Amazing how much changes in just a few short years.
P.S. My husband/handler and I are celebrating three years this Thursday - talk about a timely finding!
On a support page for Sensory Processing Disorder, I recently came across a woman, perhaps a few years younger than I was, asking how anyone would ever date her with her SPD. You could hear the turmoil in her e-voice; the sensitive loner who craved a hand to hold in the face of her differently-wired brain. She proceeded to list all of the places she found difficult to comfortably sit and be herself without SPD backlash: restaurants, Broadway shows, concerts, wine bars, big parties. It was a litany of what non-SPDers would consider the bread-and-butter of their social lives – the social life this woman desired. I immediately responded to the thread:
I am a 28-year-old female diagnosed with SPD only last year. It took 27 years of misunderstandings and bombarding visuals, hysterical crying in the middle of soprano solos, ongoing spatial challenges and constant bruising, and seemingly endless guilt and shame to finally receive my diagnosis. I met a man nine months before I learned of my SPD, and now we are getting married in November! He knows some things are no-go for me, and he was willing to learn and take the time to understand. But in the past, and still - yes, dinners out are rough, parties are tough, concerts are impossible. Thankfully there are romantic nights in, movies, quiet apple orchards, small coffee shops, and walks on the beach :-)
I was proud of my response – equal parts encouraging and strong. Considering it was a month before my wedding, I saved all of my sensible Super Woman speeches for those requiring coherency. In reality, I felt like I was dangling precariously from a completely unraveled sweater. Granted, I have SPD, and on any given day, I can go from cool and calm to uncaged and uncomfortable in the blink of an eye (honk of a horn? Span of a large room? Feel free to select your favorite sensory metaphor). So it is with this disorder. It can take as little as a man speaking loudly on a tightly-packed subway car to make an SPDer’s skin crawl, and from there, the entire day can turn into a nuclear meltdown. Warning! Warning! Tears and anxiety imminent! Take cover!
When the dust settles and the reactor cools, I look back in surprise at these hours of disarray as if they aren’t truly my own, the work of a silent sensory doppelganger. She is still a mystery to me now after 17 months of this diagnosis; a sneaky saboteur that sidles up beside me just when I think I can let my guard down and relax. It’s no surprise that she and I struggle with relaxation – how can a person lacking a sensory filter remove themselves from their post of intense focus, especially when without this focusing, sounds and sights intertwine and fight for attention.
For those of you without SPD, I implore you to close your eyes the next time you’re in the thick of a very busy public location. Listen closely to every sound your ears can reach – the toddler cooing at their first red ball, the homeless man asking for change from the cold sidewalk, the screech and whoosh of an arriving bus in the distance, the businesswoman’s stiletto heels, and the echo of wind whisking past you. Hear them all as if they were right next to you, eager to dance up your spine and dive into the cavity of your ears, fighting to be categorized, recognized, processed all at once. Open your eyes now and scan the crowd. Trace the lines of every person who passes you, see each wrinkle in their jacket, every freckle on their face. Paint the lines of their hair. Now take them all in at once, and their surroundings, every dent and fold of flesh and slat of metal. They too want to be understood and puzzled together to form solid shapes; they too want to be filed in your brain at the exact same moment.
I envy those of you who can perform this exercise and then seamlessly flow back into your sensory-stable life. My days are a menagerie of these two sight and sound exercises, however they occur all at once. The toddler’s coo, screech and whoosh, freckles and wrinkled jackets all rush at me, like a sneak-attack of hundreds on a single, unarmed soldier. I never feel connected to any physical spaces I enter. The proprioceptive sense is harder to describe when it’s missing. It feels as if my feet never fully touch the ground, and I cannot find my body in space. It’s no surprise that I’m always displaying colorful bruises, unable to trace marks to actions.
A mere month before my wedding, I was terrified. (Not because of my choice in husband, mind you. With his penchant for humor, smiling eyes, and strong hands, my handler - now husband - embraced my sensory diagnosis. Often he spotted my doppelganger moments before me, and in the style of Temple Grandin, turned swiftly into a human hug machine.) How was I supposed to enjoy the day when it meant 140 moving bodies and voices scattered around a room, dancing to the thumping of music, reaching for me to take photos? A wedding encompassed everything I feared as an SPDer – complex and lengthy visual challenges, inconsistent auditory input, and a wide-open space in which I was one half of the center of attention. Yes, we could have chosen a tiny, crisp ceremony followed by a private dinner, but in spite of my sensory challenges, I am bubbly and vivacious, and love having dear family and friends at hand. Instead, we planned a wedding with a sensory-friendly-twist.
We selected a venue with expansive windows and calming views of the Atlantic Ocean, and to continue this sense of peace indoors, our colors were shades of light blue and sand. The photographer and videographer agreed to tuck away their harsh camera lights and stick to the soft glow of the space. The DJ received a list of sensory-unfriendly artists, and familiar requests, and agreed to keep the sound low. My dress was soft and comfortable, and my husband designed sneakers for us to wear during the party. We planned the entire wedding down to the smallest details.
Most importantly, I decided to reach out to every single guest, and admit to my SPD. I wrestled with feelings of embarrassment, inadequacy, guilt, and shame. But understanding can only begin when fear ends - why hide this condition anymore? Especially when it took most of my life to find a reason for my seemingly odd behavior. I deserved to be understood at last. I sent along definitions, descriptions, and resources for further reading, as well as a voiceless prayer to the universe for compassion and understanding. When given the chance to be merciful, people are beautiful and kind. I received emails from second cousins and family friends, near-strangers and close pals; all were touched by the sentiment, all praised me for my bold admission.
The night before the wedding, I was completely unhinged in a way only an SPDer unhinges. It took the sheer loving force of my family to pry me from my bed, tie my sweater, and scoot me out the door to the rehearsal dinner of forty. My sensory doppleganger and I clung to the wall of the restaurant, and awkwardly received guests as they fought for our attention. A nerve-wracking situation heightens sensory sensitivity, and with a wedding a few hours away, I felt lost in a sea of people, voices, and well-wishes. My almost-husband, a sensory sage, squeezed my hand until my fingers were swollen, and kept me focused.
On the morning of November 13, 2011, I rose from lavender sheets into the bright blue autumn day. I took deep breaths and used my Wilbarger brush. I spun neatly into my billowy ivory dress and tucked blue hydrangeas into my hair. I met my handsome almost-husband on the boardwalk and we laughed and twirled before the lenses of cameras. Guests peeled away from their steps of arrival to embrace us, passers-by stopped to watch. We rushed to the ceremony space, marveling at the bubble of energy, grasping the hands of our parents and siblings in joy. While guitarists played, I walked down the aisle to meet my love at the chuppah, the wedding canopy, smiling nearly wider than my mouth would allow. My sensory doppleganger was present. She is always present. She will always be present. On the wedding day, however, she was decked in her finest attire; she sat grinning – wistful, hopeful – in the back row.
To learn about my adult life with SPD, read more of my blog, Coming to My Senses, and visit my website at www.rachel-schneider.com.