I see you at the edge of a swivel chair, frantically taking notes – or perhaps in mid-turn of a doorknob as new words wash over you with the crispness of a gasp; you are alone in your dimly-lit living room, laptop in hand, leaping from one webpage to the next with a burning focus your person has yet to witness in your multiple decades of life. There are hundreds of you, maybe thousands, moving in tandem toward the same place, yet you are unaware of the company you’re about to keep, those just like you out there, and you feel utterly alone.
Someone has just told you that you have Sensory Processing Disorder (SPD). Perhaps it was a dedicated occupational therapist who asked you a battery of questions that could only be described as a near-perfect timeline of your life so far.
Or maybe it was a forward-thinking mental health professional who connected the dots and illuminated your pattern of sensory input and anxiety, depression, avoidance, engagement. Maybe it was you, ever the stranger in a strange land, finally finding a signpost, an errant breadcrumb, something that will certainly lead you home.
Regardless of the source, this information is scarily accurate – so accurate, in fact, that you briefly consider whether or not a Google Earth camera car has been following you since you first scrunched your infant face against the light of a bulky old-timey camera and screamed, recording your every subsequent struggle and success. You think, for a fleeting moment, that your home has been bugged somehow, that tiny recording devices have been tipped into the flowerpots on your windowsill. You are clearly (probably?) not a spy or worthy of an outpouring of dedicated technological stalking, so you quickly rule these out.
This is probably not your life.[Image description: The outline of a male spy with dark sunglasses and a brimmed hat against a white background, reading “Life of a Spy.”]
Maybe the therapist is a card-reading, crystal-ball-peering psychic, or the information you’ve stumbled upon is a hoax. Or maybe, just maybe, this thing you’ve been grappling with since you first cast your gaze out into the world is blissfully real.
SPD, huh, you think. S–me–D, for it is most certainly and suddenly your disorder, your difference.
Once you suspect this information, you cannot un-suspect it. Once you know it, it cannot be unknown. You become an armchair Yoda as you come to terms with the meaning behind such a diagnosis.
Sense or sense not, there is no try[Image description: The photograph shows Yoda, from the Star Wars franchise. He is a small creature of unknown origin with a wrinkled green face and pointed ears. Via Wikipedia (http://en.wikipedia.org/wiki/Yoda)]
That time that your cousin had the lead in the school musical and you clamped your hands flush against your ears and cried until someone walked you out of the auditorium and into a quiet, empty classroom? You weren’t just “being a brat.” The way that you ran your hands across the runny-nosed faces and paint-daubed arms of your preschool compatriots? You weren’t just “having boundary problems.” Your penchant for deep hugs, your dislike of surprises, your inability to fend against the harsh words of your teenage foes? You weren’t just “being sensitive.” Know this, I do. Have this, I do.
You’re suddenly faced with a wide array of emotional states including, but absolutely not limited to: hopeful, skeptical, relieved, confused, angry, sad, strong, brave, enlightened, empowered, embittered, scared, frustrated, hopeless, limited, limitless. The world is suddenly your oyster, pearl intact, and then the world is just oyster shells, carelessly discarded at the lip of the shore. You change your mind from minute to minute, from interaction to interaction. It’s so great to finally know what’s been going on with me for dozens of years! You exclaim to family and friends. Why did no one notice this about me sooner? You mutter, especially at night when you are most vulnerable, How did this happen? And why did no one do anything to make this better?
You point fingers at everyone. You blame your parents, your siblings, your extended family. Surely, you think, they must have noticed something. You blame your teachers, your religious educators, your sidewalk gurus, and the wise man behind the deli counter who knows the ins and outs of your particular order. You blame Mr. Rogers for telling you that you were special and you blame him for not telling you exactly why.
Won’t you be the target of my emotional turmoil?[Image description: An older man with a red sweater and a tie leans on a toy trolley car against a blue background]
And then when there’s no one left to condemn, you blame yourself. This is the most painful and fiery accusation of the bunch – after all, you are literally (and always) right under your own nose. You knew that you were “different,” “weird,” “quirky,” and “needy.” You had grown to hate yourself somewhere between adolescence and adulthood – well, maybe not all of you, but the bits that you could not explain and could not control, the behaviors and needs that made you feel foolish and broken in front of others, the traits that chipped away at your precious core, at your sense of self, because they were misunderstood. Just when you need to support yourself the most, you turn against yourself once again. You piece of human garbage, you useless and functionless collection of cells, why didn’t you demand that someone help you? Why didn’t you say the right things and see the right people and learn about this sooner? How did you not do anything about this for so long? Why did you hide within the folds of your perceived inadequacy?
You’re seeing a rift between life before you had this crucial information and the ground on which you stand. You’re feeling like two different people, two halves of a greater whole waving from opposite sides of a vast chasm. Hello, hello, hello, you echo. You’re contemplating the idea of beginning again, of digging out your prom dress or tuxedo and calling a redo on the most noteworthy events of your history so far. You’re searching for life’s rewind button. You’re dreaming about moving to a remote village in the Eastern Himalayas. You will be happy there, you think.
home sweet home[Image description: A few small white homes on the edge of an otherwise empty, green cliff in the Himalayas.]
You won’t be moving because it won’t change anything. As they say, wherever you go, there you are, and sometimes in life, things just happen in a certain order for no apparent reason. We longingly look backwards, trying to muck our way through the mire, but we can’t change what has happened to us. You learn this eventually.
The power is in the looking forward after your diagnosis of SPD. It’s in the Wilbarger deep pressure brush and the fistfuls of fidgets that your occupational therapist will press into your palms. It’s in the exercises and tools you acquire that make you feel regulated for the first time. Ah, you think, briefly discarding the weighty cloak of your differences, this is what neurotypicals must feel like every single day! The power is in the cognitive shift from I am a disaster to I am unique, from I can’t handle anything to I can handle many things a certain way. It’s in the trying of old things with a new understanding of who you are, how you’re wired, and what that really means. It’s in the starting to succeed at the things in which you once failed. It’s in the first time you try something new – salsa dancing, paragliding, walking to the supermarket unaided – and you feel capable, strong, and able. It’s in the explanation of who you are – unashamed and unabashed – and it’s in the acceptance of those around you. It’s in the accepting who you are, in spite of the acceptance of others.
I see you because I’ve been you and I am still you. The day you receive your diagnosis, you think you’ve reached the end of an arduous journey across the desolate landscape of Youville (population You). In reality, your tricky tour has just begun. I’m watching you coming to your senses much as I came to my senses, and I’m welcoming you to the club with open arms. I’m reminding you that you are not alone, that you’re an important piece of a vast, diverse community of truly beautiful people with SPD. I’m urging you to see your experiences as valid, your behaviors and emotions as acceptable, regardless of what you’ve been told before and in spite of what you’ve told yourself. I’m protectively shadowing you as you delicately find your footing for the first time. I’m encouraging you to have patience, to look forward with hope. I’m promising you that things will get better.
With love and strength,
Rachel S. Schneider, M.A, MHC is a trained Mental Health Counselor and proud Sensory Processing Disorder (SPD) adult. She was diagnosed with SPD in 2010 at age 27 and since then has advocated for adults with her neurological condition through her writing and related outreach projects. Rachel authors the blog Coming to My Senses and maintains a website on adulthood SPD. She frequently blogs for the Sensory Processing Disorder Foundation and writes for Sensory Focus Magazine, and has most recently been featured on The Body is Not An Apology, Mind Body Green, and the third episode of the SPD Parent Zone Podcast. She tweets about SPD at @coming2mysenses and posts about SPD on Facebook. Rachel lives in New York City with her husband and she firmly believes that her body is not an apology. It is a triumphant shout.[Headline image: The photograph shows an older white woman with black hair. She is wearing a pair of sunglasses, a straw hat, and a peach-colored blouse. She is smiling and holding several pieces of paper. Behind her is a blue sky with clouds.]