Monday, August 23, 2010

Bathroom Brushing

This sensory diet should theoretically be a no-brainer. How hard is it, really, to take a few moments out of your day every 90-120 minutes for a quick, therapeutic brush-down? I can reach all of the required spots. I own a brush, and it’s in a makeup case. Total anonymity. Alright, it gets a bit more difficult when it’s paired with jumping like a sugar-high kid, and doing push-ups against a wall (which, coincidentally, is having a wonderful impact on my arms), but still doable. Now take these seemingly OCD quirk-filled behaviors, and pair them with a very public setting, such as an office environment. I can’t exactly brush and jump and press at my desk without drawing copious amounts of unwanted attention. Even in the bathroom, boldly – sans stall – I’ve gotten sideways looks and ill-spoken commentary as I tried to convince myself it looked like I was merely using a lint brush. Once, after a detailed explanation, other people hopped with me in support.

Fine, to the bathroom stall it is. There’s less of a chance that anyone will notice the new girl and her crazy behaviors in the privacy of a stall setting. Besides, in an office filled to the brim with engineers, the occurrence of running into another female in the bathroom is highly unlikely.

Except, of course, this morning. My watch signaled that it was time to partake in my sensory diet, and makeup case in hand, I walked casually to the bathroom, hoping to go unnoticed on the whole. As I reached the front office door, a young woman, well-dressed and previously unfriendly, cut in front of me, and I proceeded to follow her all the way to the small office bathroom, through another two doorways. We locked ourselves into stalls at the exact same moment. I faced a choice – audibly brush in the echoing bathroom (and jump? I mean seriously, how does one even begin to explain jumping noises in the bathroom?), or don’t, and just abandon plans. But I had already felt myself getting a bit agitated from sitting under the glaring office lights before a sharp computer, and I had planned the required diet around my trip to the gym (elliptical machines and sweaty brushing does not a fun time make), so I decided to go for it. She said nothing – she couldn’t see me, she doesn’t even know my name, but I winced with each whooshing brush stroke. I know that if it had been me, I’d wonder what the hell was going on just over the partition. I’d be armed with confused remarks for coworkers (“So I just went to the bathroom, and it sounded like someone was grooming in the stall next to me. So freaking awkward!”)

Although she took her time, she eventually left me and my brushing. I remained, an embarrassed and unfortunate bathroom gymnast: taking the gold in the wall press event, silver in the jumping finals.

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.

Thursday, August 19, 2010

Answers - OT, Session 1

Yesterday was my first session with the OT, and I have an official diagnosis. According to her, I do indeed have Sensory Processing Disorder - this is the overarching condition. More specifically, I have Sensory Modulation - Over-Responsivity, affecting vision, auditory, tactile, and vestibular functions. To put it simply, my wiring is such that I over-react to sights, sounds, touch, and the movement of my body in space. She also said it seemed my vision and my auditory system were in competition, and that I had trouble compensating for both, leading to an overload, and often, anxiety attacks.  

I spent an illuminating hour in her office, which is reminiscent of a rowdy two-year-old's dream-home. There is an entire room dedicated to tire-swings, bungee cords, and an assortment of play tools I couldn't even begin to comprehend. In fact, I was startled upon walking in - remember, I'm sensorily over-responsive - and between the clash and boil of bright colors and tangle of play-things, I did what I've learned to do over the years, and just look the other way. While I'm over-responsive, many children diagnosed with SPD are under-responsive sensory-seekers (oftentimes, these children spend a good deal of their time crashing into items, throwing objects on the floor, hitting other children), and the office seemed geared towards them.

We sat in kiddy chairs at a tiny table. A machine with rainbow balls of bubble gum stood to my left, a nickel already in the slot. She told me that I was a textbook case, and that many adults currently live frustrating lives with this neurological disorder, misdiagnosed with ADHD, anxiety, or even depression.

I was put on a two week "sensory diet," called the Wilbarger Deep Touch Protocol.  Patricia Wilbarger, a Clinical Psychologist and Occupational Therapist, is a leading expert in the area of SPD/Sensory Defensiveness/Sensory Integration (SPD is the newest term), and she developed deep-pressure sensory modulation techniques to counteract SPD symptoms. The theory goes that this technique (referred to as DPPT - Deep Pressure and Proprioceptive Technique) uses stimulation to help the mind-brain-body organize and begin a rewiring process. In other words, it helps inhibit the sensitivity of the nerve receptors, allowing the person with SPD to transition from one activity to the next without issue, and instills enhanced movement coordination and sensory modulation. To put it simply, it reduces the things that lead to discomfort and anxiety.

Not surprisingly, this sounded ridiculous to me at first. She took out a white brush, which reminded me of a softer shoe-shining brush, and told me that this little tool was an integral part of this process. She instructed me to take a break every 90-120 minutes in the next two weeks to "brush" myself - my arms, legs, hands, and back if I was able to recruit a helper (thankfully, my boyfriend is open-minded and caring, and he's been a huge help in the past 24 hours). Along with this, I was prescribed to do 10 wall-presses (like push-ups against the wall), and 10 jumps - these activities would train my brain to realize the location of my joints in my body, and the location of my body in space (one of my biggest issues dating back as far as I have memory). I was also asked to start taking Omega-3 pills, which enhance the fluidity of nerve cell membranes.

She reminded me that the most important part of this entire process was my own understanding of my body, mind, and correctable malfunctions. After 27 years of unexplainable "quirks" and less than desirable behavior, I have quite a bundle to carry - the guilt of ruined family gatherings, missed parties, and frustrating dates. She urged me to let it all go - to remember that my signals have been crossed for nearly three decades, and that I can improve. She encouraged me to reach out to my family and friends, and begin educating them all. She ensured me that this diet was just the very first tool in her arsenal.

I left the OTs office feeling hopeful and curious about the weeks to come. Once I got home, I began following my sensory diet, brushing and jumping. By the time Josh showed up at my doorstep, two cycles into the DPPT, I felt light and giddy (a free feeling I don't ever remember encountering before), and I had to assure him, while giggling ridiculously, that I wasn't drinking. During the evening, he pointed out that while brushing, I got visually progressively calmer, to the point where I actually had to lean my head on the back of the couch.

I am over 24 hours into my diet, and I am startled to already see results. Last night, for the first time in months, I fell asleep unprompted while feeling quiet, not agitated like usual. The heavy jet-pack of anxiety that has been strapped to my chest since I was a kid is nearly completely gone; I feel like I'm breathing. I feel light-headed, as if I just got off a dizzying ride, but I'm not concerned at all, and I'm enjoying noting the lack of anxiety where it once stood so firm. I walked many avenues crosstown to the bus this morning, never once checking my watch fearing I was running late. I met with two of my fellowship clients today, and I spent no time agitating in advance about preparation of materials - in fact, the time I normally spent silently stewing and second-guessing my lesson plans was spent emailing dear friends and catching up with colleagues (both of whom asked me why I was so calm today). I noticed an improved connection with my clients, and my new-found flexibility put one of them, who is normally closed and anxious, at incredible ease.

It's time for my second to last DPPT work of the day. Funny, as I am still feeling that calm wooze rushing over me from an hour and a half ago. The TV is on in the background - the lights aren't bothering me as much tonight. Neither is the rattle of the air conditioner. Seems like we're onto something.

Wednesday, August 18, 2010

Countdown to OT - Intake Session

T-minus 10 minutes until I leave for my first Occupational Therapy (OT) intake session. I'm so nervous, I'm just about ready to jump out of my own skin. Ironic, because the very thing I'm feeling now is what I'm hoping gets corrected through this kind of therapy.

Monday, August 16, 2010

Coming to my Senses

It has taken 13 years and a veritable force of medical and mental health professionals, but at 27, I can finally say that I have come to my senses . . . or well, come to an understanding of my senses. For nearly a decade and a half, I have been operating under the naive assumption that I have Panic Disorder, a diagnosis that fit me not unlike a warped pot-lid. It's true, in certain situations, my palms sometimes get sweaty, my heart often races, and I am thrown into a tailspin of symptoms and reactions. These feelings have caused me to avoid similar places, and so a cycle of fear and avoidance had developed into an anxiety disorder.

The question no one ever stopped to ask, however, was "why?"

Why were these panic-related places always auditory and visual menageries of unfortunately massive proportions? Why would my auditory focus veer in and out of private conversation like a broken lens, fixating on the din of city buses/tourist-chatter/sirens/heels-on-sidewalk, and why did these sounds fight for the foreground in my head? Why did crowds of people in daylight seem to radiate as sharp outlines with millions of points of detail, and at night, why did their over-clarity feel like drilling behind my eyes? And why, after a day of "bombardment" - (of simple halogen office lights, crispy computer screens, and complex commuting) - did I feel internally shattered? Why did I crash-land under bizarre amounts of extra-soft blankets (5) in the depth of summer, the air conditioning cranked high, my pulsating body and mind unable to break free into rest? Why did I ask couchmates for sitcom punchlines, and accidentally bash my body into furniture, only to forget it all soon afterwards?

Simple, my new therapist said last week. Sensory Processing Disorder. SPD. Although nearly 50 years in the making, it's only a decade old in therapy circles, and is based upon the research of occupational therapist and developmental psychologist, A. Jean Ayres. In the 1960s, she described seemingly strange sensory "sensitivities" as an inefficient organization of sensory information within the nervous system, and she believed this inefficiency led to a multitude of symptoms. These symptoms oftentimes come with a host of secondary symptoms - one of them being anxiety, my old, dear friend.

As the disorder is young compared to most others (it is being petitioned for entrance into the next DSM in 2013), it often is applied to children who show tendencies to avoid or crave touch, movement, taste/smell, visual, or auditory stimui. I'm a child of the 80s, and we had no such explanation for the same tendencies. Only now, as SPD organizations are popping up, and mental health professionals are being trained on this disorder, are adults putting together their puzzle pieces and stepping forward.

I've started this blog to capture this experience as a very self-aware Master's student, from the psychologist's initial diagnosis to occupational therapy and beyond; it's an unexpeted plot-twist in my life. My hope is that it can be a companion to those of us adults who are playing catch-up with our sensory-selves, after many years of misdiagnosis, isolation, and confusion.