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Wednesday, September 29, 2010

Handle Me with Care

Been beat up and battered around/Been set up and I've been shut down/You're the best/thing that I ever found/Handle me with care/I've been uptight and made a mess/But I'm cleaning it up myself I guess/Oh the sweet smell of success/Handle me with care.
-Traveling Wilburys

Last night, while discussing methods of travel for a theoretical upcoming trip, I heard a loved one say into their phone, “Rachel can’t handle it.”

If there’s a single phrase that sums up the guilt, sadness, frustration, and anger of the past 14 years, it’s “Rachel can’t handle it.” It’s been explanation by those in The Know for those in The Sort-of Know about why I’m unable to attend an event or perform some universally-accepted mundane act. It’s been mouthed by family, friends, and significant others, and I’ve even found myself resorting to these four demeaning words when I’m scraping the bottom of my bucket, out of reasons for why I can’t act the way I should.

The guilt and agitation connected with the sentence comes from the many years of what happened after the phrase was uttered. It often meant I would be left alone, in tears, chastising myself for my apparent short-comings, while those I loved would go and do and be in ways I couldn’t fathom. In some ways, it spoke the truth: I couldn’t handle certain zoos of lights, sounds, sensations, and crowds; a cacophonous failure composed of sensory overload. The self-flagellation that followed was – and still is – relentless and unforgiving. “What the hell is wrong with you?” I screamed to myself as I tried to keep busy and the crying at bay. “You should be able to do this; you’re such a huge burden on yourself and others.”

I’m a future therapist. I know this attitude is self-defeating and problematic, but it’s hard to be forgiving when you feel trapped within the confines of ability. In many ways, I’ve always handled more than everyone else around me. You’re going to that party? Well so am I, even though it feels like someone is throwing rocks in my head, and the lighting makes me want to jump out of my skin. You’re walking to work? Well so am I, even though my heart is pounding, and I can’t understand anything you’re saying above the din of the city. You’re going to a movie? Well so am I, even though the change from darkness to light is completely disorienting and makes me feel sick. Sure, I’ve had to back out of things (remember, Rachel can’t handle it), but I’ve spent my life perpetually pushing myself to participate until I’ve reached my limit and broken down. It’s much like spending every day carrying around 50 lb weights – doable in a sense, but difficult and painful . . . and at least you can put weights down and give your arms a rest. My sensory weights are not something I can just place on a table, and shake off the soreness. Some day it might be possible, I hope, but it’s only been five weeks since someone untangled my issues. So why, after diagnosis, after the beginning stages of treatment, after writing this blog and educating friends – after donning my awareness gear and trumpeting my triumphs and tribulations to the world, does this phrase still catch me off guard?

I suppose after all these years, they’re not just words. The words are imbued with perceived ‘failures’ of days past. They ring with the sound of jacket zippers, door slams, and non-verbalized group disappointment. They echo with the curve of my back and forehead to my knees, each unheard cry resonating upwards. They’re haunting.

Monday, September 27, 2010

Derailed

I know I’ve been a bit MIA lately. To be honest, I was starting to feel almost too comfortable in this new diagnosis of mine. Yes, I thought, finally we’re here – we’re dealing with the issues at the root and no longer pruning the leaves. People starting warming up to the idea, and I’ve received support from friends, family, bosses. I went out and ordered an awareness bracelet, homemade by a lovely lady on Etsy.com, featuring “reflex blue” (purpley-blue) beads in celebration of my sensory sensitivities. I’ve put together draft fliers on adult SPD in preparation for Sensory Awareness Month in October (mark your calendars!) It was a month of great discovery, unfortunately followed by derailment.

Off-handedly and loudly, when requesting support in shutting off one of three supremely bright florescent lights in a classroom, a professor of mine shouted something akin to, “DISABILITY? You have a Disability! You need to register this DISABILITY with the university before I can help you with your Disability.” The entire class was watching.

Disability. Hmph? I’ve heard “disorder,” “neurological condition,” but never “disability.” And it wasn’t just “disability,” it was “Disability,” vivid and clear, with a capital D. Disability. Like the special parking spots, and gently-geared Olympic games. Disability. Like a protective helmet, like missing a leg, like my lack of ability, like being disabled.

I spun around, speechless, cheeks bright red, to face my classmates as I skirted my way across the room back to the safety of my seat, barely fighting back my first set of tears in an entire month. As I reached my chair, she bellowed “you can turn off that light now,” and I complied. When I sat back down, I turned around to face a classmate, who had admitted that she, too, was diagnosed with SPD back when she was 14, and asked her, in whispered shock and in tears, “Does this mean I’m disabled? How do you define disability?” She tilted her head in consideration. “Well,” she started, thoughtfully, “it’s a bit disabling, don’t you think?” I spent the rest of the day’s classes as invisible as possible.

The next 48 hours were comprised of a series of teary meltdowns. Having spent a month marveling that I didn’t have to cry, I spent two days stuck in sad-mode. I asked just about everyone I knew – “am I disabled? Would you consider this a disability?” D., my favorite SPD guru, wrote, “think abilities, not disabilities . . . you are not some freak, some weirdo, or creep. You are just a girl who was born with a bad sensory processing system. That's it. Just some faulty part that makes things go wrong a lot. Other than that, you are totally normal, a very high functioning person. Believe me, I know what it's like to suddenly figure out that you're 'special needs' and 'disabled'.  But who declared them disabilities or special needs anyway? The only reason they're called that is because the majority of the population doesn't need them.” My psychotherapist advised me to register with the university. A professor herself, she said it wouldn’t hurt to let my professors know I needed a bit of special treatment. (After all, who really *doesn’t* love special treatment?)
The Americans with Disabilities Act (ADA) has a three-part definition of disability. Under ADA, an individual with a disability is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment. A physical impairment is defined by ADA as "any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine."
SPD is neurological, and if let run rampant, it does affect major life activities. So there it was, prepared for me and my brethren by the government. Disability.

Since the week before last, when this incidence occurred, I’ve shifted my perspective. Why not feel better in class if possible? Why not reap the benefits of this poltergeist? I’ve asked both my OT and psychotherapist to write letters to the Dean, and I’ve completed a questionnaire from the Dean’s office on what my needs are, and how to meet them (lower lights, understanding, quiet spaces for testing), and I hope to submit the paperwork by the end of this week.

I suppose what actually confirmed this was all going to be OK was meeting with the Dean in person. As I walked into his office, I introduced myself, and he recognized my name from an earlier email. His office was a visual menagerie of plants, clippings, photos, objects – all brightly lit by florescent lights, and within the first ten seconds, I must’ve squinted, as I tend to do, or looked uncomfortable. Without prompting, he jumped up to switch off the overhead lights, allowing his bustling office to be lit purely by the sunlight pouring in through his windows. This isn’t so bad, I thought, as he reassured me the university would take all measures to make me feel more comfortable. I’ve spent 27 years unable to say why I needed support, but now, without question, it’s being laid at my feet.

Wednesday, September 15, 2010

OT, Session 2

It's been four weeks since I was officially diagnosed, and today marked my second occupational therapy session, which, much like the first, was a symphony of new terminology, concepts, and tools. Before even really settling in, my OT placed a pair of massive headphones on my ears, and turned on what can only be described as an iPod on steroids. 

It was a listening program, based on the techniques of Dr. Alfred Tomatis, an otolaryngologist (a physician of the head, nose, and throat) whose work with opera singers lead to the development of the "Electronic Ear." This device used earphones and sound filters to enhance and sensitize the singers to the frequencies they were missing, and forms the basis for the listening programs used today. As far as I understand, the programs help with sensory gaiting, or the automatic process by which the brain adjusts its response to stimuli. When one stimulus is presented, there is a response. But when it is followed by a second stimulus soon after, the response to the second stimulus is blunted. This is an adaptive mechanism to prevent overstimulation, and it helps the brain focus on a stimulus among a host of other distractors - something that I have trouble doing. 

The sound coming through the headphones was peaceful, like chanting monks and classical music, but it sounded different, almost as if tiny monks were actually sitting in my ears singing to me. The music is conveyed through bone conduction, as are most lower-frequency sounds that we hear (and the sounds we hear of our own voices). According to the listening program's website, by boosting both high and low frequencies as well as volume in this manner, the muscles in the middle ear tighten and relax, which strengthen them over time, and lend to more focused hearing. Just before we shut off my first session with the program, I noticed my ears were twitching, especially on my right side - a strange sensation I cannot say I've ever experienced. When I reported this to my OT, she was startled that I was so sensitive, and marveled that I noticed my right ear twitching more than my left (it seems more of this type of sound is filtered through the right side). We are in the process of working out the details, but if all goes as planned, I will be required to listen to an hour of this music per day for 80 days. Seemingly a worthwhile undertaking.

We also discussed my propensity to smash myself into the corners of just about everything, and my lack of ability to remember when and how I got bruised. Apparently this deals with proprioception, the sense of the position, location, orientation, and movement of the body - and its parts - in space. According to my OT, it seems my brain is not getting enough feedback from my body (hence the positive effects of pushing and jumping during the brushing technique), and the receptors between my joints are not completely conveying where everything's connected. Thankfully, the best medicine for this symptom is the gym, something I've taken up since my yoga injury in March, and have become even more dedicated to lately since my diagnosis. She called for extra heavy pressure on my lower body (anyone want to lend me a trampoline?) and balance practice via an old yoga favorite, the tree pose. 

I have also been instructed to download some Mozart (also based on Dr. Tomatis' work, suggesting that listening to Mozart's music may induce a short-term improvement on the performance of certain kinds of mental tasks), and listen to a CD of nature sounds that helps the brain learn to process where sounds are derived, spatially. 

I've learned so much in four weeks, and am already feeling more focused and less anxious, so I can only imagine what the next month holds in store. 

Friday, September 10, 2010

Shedding Stigma: A Refuted Renaissance

In therapy the other day, I came to one of those profound realizations you can only come to in a dedicated therapy session: by being diagnosed with SPD, I had transitioned from a mental illness to a neurological disorder, and by default, had crossed categories from stigmatized to understood.

For 13 years, I was told that I had Panic Disorder: a psychological disorder characterized by intense anxiety and unpredictable panic attacks. It has always been terrifying, always wondering if I'd have one in the middle of a loud, bright, crowded event, embarrassing myself and those around me. Everyone I knew treated me kindly on the whole: as a woman plagued by her own unexplainable demons, and frustration arose - in both me and those around me - when I was unable to "overcome" those demons in certain situations. There were the excuses ("she came down with a cold and couldn't join us tonight"), ultimatums (seek even more help, or risk losing out), severed relationships, and strained friendships. With this title, I was stigmatized.

Stigmatism is an ugly place, filled with people who mean well, but cannot commit to true understanding. In our society, and in my own little microcosm, people with mental heath issues carry the immense burden of stigma. It's unfortunate, truly, as people with mental health issues desperately need the dedicated support and unyielding understanding of those around them. Instead, this seemingly nebulous world of "mental illness" leaves people baffled and afraid. We are, of course, often afraid of the things we cannot see, and therefore cannot understand. (AIDS calls for runs, breast cancer races for a cure, MS and childhood diabetes means fundraisers and colorful ribbons, but who champions the mentally ill, the illness hidden inside?)

My therapist told me of a psychological study, where "normal" individuals were instructed to check into a mental hospital, claiming many symptoms of schizophrenia. All individuals were swiftly given diagnoses based on their claims, and many spent up to three months being institutionalized before they could convince the doctors to some degree that they were actually mentally-sound. When in the institution, the other patients were hyper-aware of the fact that these participants were not "one of them," even though the doctors refused to believe this was the case. Once finally released, they carried around a permanent diagnosis of their supposed "remission."

I spent nearly a decade and a half carrying around the title, the guilt, and the assumptions; three weeks ago, purely by changing the name of my "issues," I was able to shed the stigma (unfortunately guilt is a burden that takes a longer time to unsaddle). Suddenly, my diagnosis is neurological-based, and now the blame has shifted from the less-than-able individual to the miswired brain.

It's been a strange transition. My first reaction was of joy for a myriad of reasons: I'm not alone, I can improve significantly, I am understood by a unique group of SPD individuals. Suddenly there are awareness bracelets, t-shirts, magazines, special doctors, weighted blankets, sound machines - October is even Sensory Awareness Month. Loved ones are flocking to my side in a way I've never witnessed before. It's a double-bonus: it's no longer my fault, and it's got an apparent fan-base.

My second reaction has been of anger and disappointment, seemingly screaming out from my own self at 14 when I was diagnosed with Panic Disorder. She keeps saying, over and over to me, "our symptoms have remained the same, it was only our diagnosis that changed, so why was I misunderstood and why do you reap the benefits?"

If I haven't changed, then why this renaissance? More importantly, why didn't 14-year-old-me deserve this renaissance, this outpouring of love and support from all directions? (She too felt the same anxieties, she too startled easy, she too struggled to fall asleep.) Why, after 13 years of multiple therapies, disappointment, isolation, the daily fight against the Loud, Anxiety-Provoking World does the changing of a single title change everything?

Wednesday, September 1, 2010

SPD at Two Weeks

It’s my two-week OT-iversary, and considering the vast goings-on of the past few weeks, I can honestly say I am still feeling calmer overall and less jumpy than I had two weeks and a day ago. I am still brushing as often as possible – according to my OT, everyone’s needs are different with this technique, so more isn’t necessarily worse – and I am attempting to follow her guidance to blitz the gym, because eventually (somehow), we’re hoping the gym will serve as a replacement to the brushing.

I have also started following some of the food-portion of my Sensory Diet, which means a reduction of gluten and dairy, and an increase of Omega-3 fatty acids. As far as I understand, Omega-3s maintain the fluidity of cell membranes, and somehow make neural connections smoother. I’m not quite sure, but it can’t really hurt to include more salmon and flax seeds in my diet. I haven’t looked into the theories behind going gluten-free and low-dairy, but I can say that I honestly feel more bombarded by stimulation about a half hour after eating a high-gluten meal, so I bet there’s something on-target there.

My next step in OT will be a listening program – essentially an integrated neural exercise program of sound, vision, and balance. No news on this until September 15, when I have my next appointment, but I’m happy to know there are more tools coming down the pike.

Yesterday marked my first day of graduate classes, and considering I typically would’ve been anxious to the point of on-going and unrelenting frenetic discomfort, I was more normalized in my anxiety. It has been six years since I’ve been a student, and to be perfectly honest, I don’t remember exactly how it works. Since joining the working world in 2004, I haven’t had to sit perfectly still and focused for more than a few minutes at a time, and taking breaks – even just to stretch – is never a problem in an office. I forgot it’s the exact opposite in the classroom.

What stuck with me most was how difficult it was to focus beyond the oppressive glare of the fluorescent lighting in the basement classrooms, which were also lined with shiny floor tiles, and echoed. I’d be surprised if anyone else noticed the difference, but the combination made me zone in and out of focus, unable to transition from taking notes to looking up clearly at the professor. I felt like I had to hold my head, at least on one side, to keep myself aware and in the mix while squinting, and my hands were clammy the entire time. I know it’s the SPD talking, plus first-day-stress, and hopefully some of that will subside as I get used to being in the environment and continue my OT. A few classmates suggested I wear sunglasses, but I’m not Paris Hilton, and I’m still debating whether or not to tell my professors about my situation, in the event they see me breaking focus during a lecture, in sunglasses, and bolting out their door.

The best part of the past two weeks, aside from the positive effects of brushing, has been finding D. and B., two fellow twenty-something SPDers. We might as well be the same individual, our stories are so similar: from feeling quirky and different as kids, to what situations and senses are problematic, to how we deal with them, and how we perceive we’re seen by others. We all were diagnosed in our twenties – D. has had two and a half years to deal with his, and B. is in the process of hunting down an OT, so while we’re in different stages, we still have the same tales to tell. It’s bringing an immense amount of comfort to talk to people who know this as intimately as I do. Most importantly, they’re a grand reminder that I am not alone.

I will close this post with a short story about an email I received from a dear friend. Hours before I was officially diagnosed, she and I met in Trinity Churchyard for lunch. The day was parchingly humid, the summer tourists were out in full force, and there was a blur of people and sounds and heat. I couldn’t find a spot to sit where I didn’t feel personally bombarded by the sensory experience around me. It affected my demeanor, our conversation, and lunch was cut short when in the midst of all the sensory chaos, a band started to play. I left lunch feeling frustrated at my shortcomings, oozing with sadness and self-loathing. Later that night, she flew home for vacation, and I received my diagnosis, which I shared with her in calm detail a week later in an email, thanking her for being my final catalyst for understanding.

In her response, she told me that she had been recently practicing various forms of eastern prayer, and how that same evening, she had thought of me during her chants, having felt helpless in the presence of my obvious distress hours earlier. The universe is a funny place indeed.