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Wednesday, October 27, 2010

Auditory Updates

Sorry for the lack of posts recently (all two of you reading my blog, hah) - it's midterm week, and I've been MIA studying like mad. The good news is midterm #1 is done, midterm #2 is tomorrow, and then a weekend trip to visit the (hopefully) future in-laws is in store, so hooray!

Last we "spoke," I was feeling pretty cruddy from that listening program. My awesome OT told me that my symptoms were atypical, and to stop using the device while we figured out what else to do with sensitive little me. She sent me to an audiologist, just to confirm that my hearing instrument was normal, and we weren't missing something truly physiological.

L. met me with her two interns (hi guys!) and treated me to a battery of hearing tests in what can best be described as a completely-sound-proof-booth. My ears were plugged up, and a series of beeps and boops followed - some high-pitched, some low-pitched, some barely audible. L. also read a series of words that I had to strain to hear and repeat. Afterwards, I was attached to what felt like a clamp on the back of my head (really some instrument to convey beeps and boops via bone conduction). When completed, I left the booth, and they hooked me up to another instrument in the office, plugged up my ears, and sent more beeps and boops my way. We were about a round and a half into this test when - completely out of nowhere - I began to cry.

This wasn't an emotional cry - one where I was entertaining any hurtful or wistful thoughts. In fact, I wasn't thinking about anything at time time, aside from how interesting it was that the office wall was painted like a landscape, yet I couldn't stop the tears. I felt them well up, the intensity grow, and the inability to stop, especially as the beeps and boops got louder. L. asked her interns to stop the test, and asked if I was ok - I truly was, I wasn't hurting in any way, but it almost felt as if somehow through the particular tones and loudness of sounds, I was being forced to cry. I stopped the moment the test was completed, feeling completely fine. L. commented that I was "super-sensory." I thought back to the listening device, and how I felt a greater propensity towards tears, as well as the myriad of activities in my life - loud, bright, busy - that made me fight back tears, assuming I was just feeling beaten by this then-nameless disorder.

The long and the short of it is no one knows why I'm so sensitive. L. and my OT called this an "auditory reflex," a perfect description for a reaction I didn't see coming and didn't feel emotionally-attached to at all. It felt the same as when a doctor strikes your knee with a little metal hammer, causing your leg to jump - except it was sound instead of a hammer, and jumping meant tears.

I'm going back to the listening device next week, starting with the bone conduction bit turned off. It's true, I listen to my iPod just fine, so the intensity of the bone conduction is the only outlying variable.

Ah, SPD. You always keep me on my toes, you wily disorder. Took me 27 years to learn your name, and just when I think I've got you pinned down and defined, you manage to slip out from under me, leaving specialists shaking their heads in your wake.

Monday, October 18, 2010

Case of the Yucks

I’m not feeling so hot these days. Right after my brushing intensive, I was feeling pretty weightless and anxiety-free, but I guess between my over-the-top schedule these days, and my trials and tribulations with the listening program, it’s no surprise I’m feeling pretty yucky. This is always the worst part of any treatment program – the middle, those meaty hours that will eventually provide the firm foundation for intense improvement. Very rarely does treatment solve an issue right off the bat. From a mental health perspective, the thickness of post-diagnosis therapy is when the true issues burst through the surface, and demons have to be put in their place and understood. From the world of an SPD adult, this time, which is filled with mature hope, boldness, strength, and focus, totally sucks.  I feel like I’ve taken steps back to where I was a month and a half ago. I find myself fighting back tears even more often than in the past. I wear my tinted glasses even in the office, because I can’t tolerate my desk or screen without them. My body surges long after I’ve taken myself to bed, and I feel like I’m fighting myself to keep up with even my most basic schedule (yes, it’s a huge basic schedule, but it’s still only my must-do-activities).

I know my reactions are a result of this break-down-and-build-up we’re in the process of in OT, but it’s SO hard to stay patient and choke back the feelings of nausea and discord – especially since I got to experience life without them for a month.

Friday, October 15, 2010

. . . One Step Back

Some of you might recall my post a few weeks back, when I triumphantly approached the Assistant Dean with my new, comfortable description of SPD as a "disability," and the hours and tears it took to reach acceptance of this potent term. I spoke to my OT and therapist, requested paperwork, and filed it with the university - in all of my "free" time (which these days seemingly consists of an hour before bed every night, assuming I'm not rushing to have dinner, unpacking or repacking for my next hour+ trip to the Bronx, etc. This endless schedule of two jobs and four classes plus commuting will be the end of me, really.)

So he and I set up a meeting, and I scrambled back up to the boogie-down borough early one day this week to discuss the university's findings on my paperwork. I'll sum up our meeting by saying it was a disaster of epic proportions. The university doesn't consider me as someone who needs support (not disabled? So where are we now, then?), and apparently he didn't think much of me either, saying they didn't believe there really was anything wrong with me, and therefore, they were unwilling to support even my smallest requests of just letting professors know of my diagnosis. As a normal, human being with emotions, I started to tear up - a habit of mine (I rarely hide my feelings) - and I asked him, while swallowing these forming tears, why we even bothered filing this paperwork if I didn't fall under their own personal category of "disabled." My questioning lead to a barrage of negativity from him, questioning my career path choice, and flaunting his power over my eventual graduation from their program. He described my reaction as "inappropriate," which is humorous in retrospect, as yelling at me for 10 minutes for my reaction was beyond inappropriate. Essentially, I apologized for displaying an emotion in public until I was able to calm him down enough and back out of his room. Later, I spoke to a second-year student with a disability, who said his behavior was par-for-the-course, and not the least bit surprising. Unfortunate, really, that in life we find those who are least suited to helping others are often placed in positions of some power.

Yesterday, to cap off this week, I received a paper back from that initial class where I was considered "disabled." I nervously looked down at my well-thought-out document, at my first grade from my graduate program. It was an A+. Josh, ever the humorist, said, "what, you couldn't do any better? You couldn't get a prize AND this grade? What, no car?" :-)

In other news, I've cut back on my listening device for now, as the hour stints were making me seriously nauseated and way more labile than usual. Half-hour sessions are still affecting me, but not in such an adverse manner. I find my middle ear feels sensitive on both sides, and I can't tolerate listening to an iPod even an hour after the listening program. I've been reminded a few times that it's always a step back before moving forward. Doesn't that just sum it all up.

Monday, October 11, 2010

Aviators, Trampoline, and an iPod on Steroids

First of all, HAPPY SENSORY AWARENESS MONTH! October is a month set aside for many causes, but one of them is mine, and therefore I’m doing my part to make others aware. I hope in an effort to promote awareness, you send this blog out to a few people you know who might benefit from learning about SPD and an adult’s experience. You can also send them to www.spdinternational.org, D.’s site for adults with SPD, and those who love them.

It’s been a while since my last post, but two jobs, grad school, and this new diagnosis really have left little time for anything else. It feels like everything all at once, really – subway rides uptown and downtown and hour-long daily bus rides to the Bronx and back at super-late hours, tons of work and homework, patients, and many, many, many bosses. It would be a lot for anyone to handle, and being smack-dab in the middle of my SPD treatments just makes it that much more difficult.

Thankfully since last week, three new tools have entered my life to help ease my issues: blue-tinted glasses, a listening device, and a trampoline.

The blue-tinted glasses were suggested by my awesome OT, who said she remembered reading once the positive impact of colored lenses on my sorts of sensitivities. I tried them out in class last week (the one where I was called “disabled”), and with my fur-collared army jacket and striped shirt, felt like I had dropped in from LAPD in 1972. My grad school classmates were fantastically supportive; one of them even suggested we all wear sunglasses one day together to make a point to the prof. I was skeptical at first, as I really have been with every tool handed to me, but then I realized I was completely focused. I wasn’t spending my usual amount of time squinting, heart pounding, leaning against the wall for support. Instead I was completely engaged in class, asking and answering questions . . . not unlike the bad-ass 1970s cop I was apparently dressed up to be. After class, I felt relaxed and chatty, not like I had to bolt, and I didn’t have that same sense of pulsing under my skin. Score one for vision. As I’m typing this from a fluorescent office, I’m wearing them, only slightly awkwardly.

My iLS device arrived last week, and my OT and her lovely intern set me up with the odd-looking piece of machinery. I’ve been asked to listen to it for one hour a day for 60 days. In an ideal world, 15 minutes of each day will be dedicated to listening as well as performing activities specified by the iLS company (from visual tracking with a yellow tennis ball to balancing exercises), and as I understand it, this is to help with some of the extraneous issues, allowing for both hemispheres of my brain to coordinate properly.

The entire concept behind the listening device is confusing to me still, even after many discussions, research, and a previous blog post. I am only on day 4 today, and can already report “symptoms” of slight nausea during the listening, extra visual sensitivity after the listening, and a slight ringing/buzzing in my ear when the device isn’t on. I’m waiting to confirm these feelings with my OT, although I know most feedback on all of these tools is given by children, so who even knows what’s what. I’m working under the assumption that my senses in general need to be shaken-up, exacerbated, and broken-down before they can be pieced back together.

The third, and most fun, new tool is a trampoline. OK, it’s not one of the pieces of equipment suggested through therapy or research, but I’ve been asked to do lots of jumping – especially with the brushing – and I’m noticing how helpful jumping can be when I’m feeling extra sensory sensitive. I believe D. said he had one in his sensory-supportive bedroom, and as Josh said, all we now need is a ballpit and we’re set :-)

So that’s where I am right now, essentially attempting to hang on to the busy myriad of amazing and stressful things I’ve got going on in my life, while educating those around me about the joys of sensory issues, and handling these sensory issues . . . It’s a lot. On the questionnaire that accompanied the listening device, one of the emotional symptoms related to this all was the difficulty of and overwhelming feeling related to performing ‘normal’ life tasks. This is a biggie for me, and always has been. It’s tough to explain to those who love you: yes, a result of this means I’m even more sensitive when it comes to juggling many life activities, and therefore even the smallest potentially pleasurable things outside of it – a new lunch destination, an extra stop on the way home, a change in schedule – make my difficulties even more difficult. Yet another perk, I suppose, and yet another minefield to negotiate. Even with the diagnosis, I feel I have to keep speaking up for myself in these moments. I’m truly not willing to overload myself and risk collapsing my job, my fellowship, my courses, my best relationship.

I’m still hopeful, though. I’m welcoming the nausea and absurd eyewear, waving in the extra sensitivity and calmly explaining my way through the world to others. I look forward to that day months from now – a year from now – as soon as I can get there, really, when I open this blog, skim my words, and strain to remember these strenuous, freeing, frightening transitional days.