Social Eye-solation

Lavender: “Okay, much as I like your hair longer, I feel sympathetic pain. Split ends suck. My hair is crunchy. If your hair is also crunchy, you are allowed to cut it.”

Partner: “No. I mean, I don’t think it is? I can’t tell. Maybe I just don’t know what to look for? You could run your fingers through it and show me?”

Lavender: “That seems like a bad idea. If you aren’t already bothered by the sensory nightmare for some reason, it would be unfair to inflict it upon you by pointing it out to you overtly. That feels like cheating. I will win this bet the old fashioned way. By outlasting you! I shall win that – wait what are we playing for again?”

Partner: *Knowing stare*

Lavender: “Oh, right. Pure stubborn pride. Well, then, shall we carry on?”

When there was nothing else to do during quarantine, we made our own entertainment. Somewhere along the line, that involved me trying to cut my Partner’s hair, and him refusing on the grounds that I told him I couldn’t just cut it straight across. I was supposed to “feather” it. I was willing (and had watched enough YouTube videos to have an inflated sense of competence), but something about the word “feathering” in conjunction with the remembered feel of his own hair hitting his neck during prior trims bothered him sufficiently that he was unwilling to ever let me try.

As there was no one else around to cut it, it just kept growing. And growing. It grew outwards – not downwards – as his hair has a decent amount of natural curl to it. If he pulls straight down on a strand, it currently reaches down to below his eyes.

We’re allowed to get haircuts now, but somehow my Partner’s hair has turned into a bet. He’ll cut it when one of us cracks, and not a moment sooner! He is confident that I will crack first because I’m the one who has to look at him regularly, and “so long as I don’t have to go outside, I can last forever. If I have to go outside in the heat for any length of time, I’ll admit you’d win the moment I felt the first bead of sweat on my scalp. As is, I can do this all year.”

Neurodiverse sensory issues (and boredom!) are real.

For his haircut attitudes, at least. As for my own neurodiverse sensory issues, sometime during the past four months my hair became so tangled up that it really does feel crunchy to me. But, because I am not quite willing to take off from my (still remote) work just to get a socially distant haircut, it will be a week yet before I can rid myself of my version of sensory discomfort. Hair appointments fill quickly. Especially when trying to book for a weekend.

I still have to wait on my hair, or risk trying my hand with an unknown stylist (shudder.) I thought I could also wait on physical therapy and that routine eye appointment I was supposed to have in April so that I didn’t lose my vision again.

It turns out chronic illness is real, too.

If you were wondering how long a now-spoiled zebra could withstand a return to the levels of pain she was in consistently for the first three decades of her life once she had gotten used to having access to preventative care tailored to Ehlers-Danlos Syndrome? The answer was “about 80 days.” Since then, I swear I have been even more bothered by the same levels of pain that used to be my norm. I guess physical therapy was doing something for me after all.

I doubt my Partner will win our hair bet, but he can enjoy a nice “I told you so” about that one.

Unfortunately, because my old PCP left practice shortly before quarantine began, I also lost prior authorization for ongoing physical therapy just before then. I took a rescheduled appointment for an arbitrary date in July when it was offered back in April. Though I’ve tried to bump up that second “new patient” consultation I must have within my same old practice to obtain a new referral for insurance, PCP appointments – like hair cuts – are backlogged. That rescheduled July appointment is still the soonest they have available.

September was the earliest I was originally able to obtain a rescheduled eye appointment. My eyes, though, like the rest of the faulty collagen in my body, gave up sooner, and I required “urgent non-essential care” for a relapse of the double vision that plagued me before in 2018.

Fortunately, we are one of those U.S. states that are still progressing through re-opening as we have the virus under control (for now.) Fortunately, my neuro-ophthalmologist still feels my decompensating eyes can be managed through mechanical correction instead of surgery (for now.) Fortunately – as we already had rented a car and were in an area where massages were more available – I thought to go ahead and schedule a therapeutic massage at a random office near that satellite eye appointment to try to at least make somewhat of a dent in my pain by shoving at least some of those knotted tight plank muscles back into shape after all the extra work they had been doing trying to compensate for my faulty joints (for now.) Fortunately, though that new masseuse (shudder again at new providers) wasn’t anywhere near as good as the person I have seen locally when I really need acute pain relief, she was good enough (for now.)

Things were definitely different than pre-covid – with temperature checks and a liability waiver required before entering the massage therapist’s office and an ophthalmologist’s office so recently sanitized between patients that the exam chair soaked my behind with chemicals when I sat down on it – but, fortunately, I was able to at least get some EDS care again after months without. We even had to go to an out-of-area satellite office for my regular doctor to see patients in anyway because I normally see her in an acute care hospital, and they weren’t quite ready to throw open the door to all the “urgent, non-emergency” patients tramping through the areas where the most acutely ill might infect or be infected.

Unfortunately, neurodiverse sensory issues also remain real even when I consciously decide that they do not (for now) outweigh my need to seize upon any available forms of pain relief and routine medical care before fall.

Modest amounts of pain relief from having four months worth of knots worked on and the relief of knowing that my next blog post will be more coherent because by then I will fully be able to see again were worth being “touched” by strangers again.

But, did I mention being touched by others is weird, and I don’t see what people missed about it these past four months beyond the actual medical relief that is necessarily conveyed by it?

I kind of don’t understand anymore how, after years of work to not flinch, I had gotten to a point where I was even fine with improv stage mates and coworkers touching me.

As a neurodiverse person and a gray ace to boot, being touched by anyone other than my Partner (and sometimes even by him) has always been weird to me.

As a zebra, being touched has also been a necessity, as my current pain levels have reinforced.

Physical Therapy. Doctors poking and prodding. Crowded subways. I’ve never enjoyed any of these things, but I had trained myself to tolerate them.

And, because I had trained myself to tolerate those necessities, I somehow was able to go all in and also force myself to further tolerate purely social forms of touch because having sensory issues doesn’t mean never wanting to spend time with another human again. (It is possible to spend quality social time together without touching. Keep that in mind these next few months!) Improv scenes that involved cast members manipulating my arms as part of skits. Hugging coworkers. I enjoyed the improv and the coworkers, so I learned to tolerate the touching.

Being touched again after quarantine is even weirder than before it. Social distancing appears to have broken my sensory tolerance for physical contact with humans other than my Partner.

Given how weird it was to be touched by another human being again after over 100 days even for legitimate “urgent, non-essential” pain relief and eye care, I have to say, I am very confused how everyone else was able to so immediately reach out and touch each other again two months before me.

(Or “embrace” the 50,000+ daily new cases of corona that came with their enthusiasm, but that is another issue entirely…)

Given how I was reminded this week that I was giving others death glares if they came within six feet of me well before covid, I am sympathetic to the original reasons why my Partner was so weirded out by the concept of “feathering.” And, I absolutely will let our wager go if he becomes as genuinely discomforted by his “long” hair as I currently am by mine.

Neurodiverse sensory issues are real.

But, since I told him the dual experiences of crunchy hair and strangers touching me this week made me feel compelled to offer a graceful way out of our ridiculous bet and he still wanted to continue it, for now it’s still on!

Enjoy the long weekend (responsibly, six feet away, and with a mask) everyone in America! And, “see” you again next week!

Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms


7 thoughts on “Social Eye-solation

  1. Your hair cut contest sounds like a battle I am having with my kid. She wants her bangs to grow out, fine. But in the meantime, a huge chunk covers one eye and she is constantly stumbling and falling off her bike and going, why, is the bike haunted?
    I normally don’t fret over her hair but when it puts her at risk for stepping out in front of a car I think it’s time to exercise firm parental ‘you’re getting a haircut’ terms. Having said that, I will work on getting up the ‘mean mom’ tone and spine. 😉

    Liked by 1 person

    1. A “zebra” is what people with Ehlers Danlos Syndrome call themselves, and the mascot of the EDS society. It comes from it being a rare disease and the motto “Doctors are taught when they hear hoofbeats, think horses, not zebras. We’re zebras.” The zebra is most associated with EDS because we apparently play the PR game the best, but I’ve heard it applied to anyone with an NIH-classified rare disease. Unicorn zebras have two or more unique NIH-classified rare disease.

      Liked by 1 person

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