Call it intersectionality, call it degrees of privilege, call it what you want. Life as an advocate coping with symptoms and medication side effects from a hidden disability is something we don't discuss anywhere often enough.
We often take our hands for granted, much in the same way those in authority take the diligence and support of the hands of the working folks for granted -- like them, we assume our own hands will toil until they. Simply. Don't. Work. Sigh.
My hands are just average little hands, a bit on the small side, a bit exhausted from typing continuously since I met the Internet in 1992. I wiped tables and mopped floors for five years at a mall food court. I rang registers and organized merchandise for another five or six years. I took notes in class. I tried to play an instrument but to be honest, that was more about feet and hips than actual music motions.
I did the dishes and the laundry and drove a five-speed across half the continent many times. And in all that time, I never really had any reason to think I'd not be able to use my hands.
One of the medications I take is the simplest and most pure item in the pharmacy. And it works. But there's a fine line where a few milligrams creates a hand tremor that's hard to shake (ha). For years, I've needed just that dose, so I've learned to fold my hands in front of others and to lift -- always -- with two hands and be mindful. Occasionally, my dose must increase -- especially when I'm under duress and stress and feeling angsty -- and the tremor is much, much worse. It is not a proportional increase at all -- my right hand shakes all of the time and my left most of the time.
At some point, it's hard to compensate.
I push through quite a bit, especially on blogging. I invested in a Galaxy phone thinking it would help to have big keys, but that has not proven to be the case -- it's actually much worse than my older keyboard phone. Trying to touch type with one finger greatly reduces the odds that my stronger fingers will hit the right key. I send A LOT of crazy text messages.
The irony is that my phone is also an important tool for me -- I'm not "addicted" to the Internet, I use the phone to manage my symptoms so I can engage in community events and social situations. If I tweet a few times while I'm at an event, take a few photos -- that triggers my memory so I can recall what happened. It's sort of an adaptive skill. The tweets are my notes to myself with hidden prompts -- the @s, the #s, even the pics are clues for me to piece together when I can type at my own pace.
And it gives my hands something to do so the tremor isn't noticeable. I can even raise my hands if I'm holding something. For a bit.
But I have little value to volunteer. I can't hold or dial a phone, I can't use a pen reliably, I can't walk (sometimes) without stumbling, I can't stuff, fold, fluff or sort. I even worry about voting -- I spend about 10 minutes in the booth to make sure I hit the right buttons. I am officially campaign/advocacy useless.
On a practical day-to-day level, the challenges are frustrating to say the least. My ability to do fine motor skill anything is pretty much gone. I have to be careful with the dishes, especially glass and silverware. I have to be very careful about carrying anything hot or heavy, even a few steps because I can't anticipate a big tremor. I have very little hand strength so I can't carry (or guide) the vacuum. I can clean just fine, but clearing items off the sink to wipe it down? That can get ugly -- one little twitch and things go flying, especially my pill bottles. And I struggle to grasp things that are actually put away in their proper place.
Other things I can't do -- use can openers (electric or otherwise), trim pet claws/nails, sometimes write legibly with a pen, use scissors pretty much ever. Find my keys. Open door knobs. Fold clothes decently. Tie the recycling bags. Carry hampers up two flights of steps.
I adapt because my partner understands and is empathetic. We figure it out so I can be a partner in managing our household and our family.
So I adapt. I probably hide a bit more than I should, but I adapt because I can still lead a productive life.
When I was told I would "come undone" -- I never thought it would be so literal. I can still think and write and say things, but it's a bit difficult to cope with the world of advocacy and activism when you realize that trying to touch the sun puts you in the "undeserving" category. I see very clearly the distinction people make between disabilities that are appropriate? acceptable? and people living with them who have a "good attitude" -- forget that.
I'm not a martyr or a saint or willing to "offer it up" or suffer in silence. It sucks and it makes life harder even though I realize I'm not going to die and feel gratitude that I'm healthier overall than I was three or four years ago. But it doesn't mean I should get shoved into the "don't care, don't count" category because I can't raise a craft beer or find my debit card to pay for a round without fumbling. And for God's sake, it doesn't mean I should have to FIGHT City Hall to keep my health insurance -- where's the social justice there?
Anther bit of irony is that I could really use some advocacy myself. There are occupational therapies available for me. There are adaptive devices -- if I had a tablet, my hand might not be permanently clenched. (Metaphor.) And my access to those things is hampered by the fact that I'm queer, that I have Highmark in a UPMC world and... I'm disabled with little money of my own. But I don't have the energy to make those things happen right now. I have no energy to figure out the systems, find the loopholes, knock on doors, discuss, disclose, set up a GoFundMe so I can replace my 7-year-old laptop, etc. Just dealing with the Social Security Administration to get approved for SSDI sucked at least 12 years of advocacy energy out of my soul.
The problem I've found is that many people truly discard you when you are not useful. One person made a "joke" about my partner being a "support pet" because I needed her to attend an event with me as an accommodation. That pierced me very deeply because it shows a complete failure to understand that challenges of being a caretaker or loved one of a person with a disability. Her hands are sometimes my hands.
The truth is that I adapt without asking for support because I fear the answer with be no. Or simply silence.
But hopefully in a few months I can go back to my typical dosage and the tremors will be less noticeable.
In the meantime, I have to prepare myself for managing zippers, buttons and grasping things with the additional layer of gloves. Ironically, I can manage the snow shovel just fine.
You aren't going to come undone when you have to cope with a disability. Don't buy into the rhetoric that you must have a certain attitude, especially when confronted with memes on Facebook about adversity and perseverance. It is really incredibly awful to lose something so basic to your life -- like using scissors -- even if it's not fatal. It's okay to mourn it and to ask for help. It's probably true that a positive attitude is helpful, but it is most certainly true that you deserve support -- emotional and physical -- as well as an opportunity to feel whatever you feel. And really no one should tell you how to feel, even if they've been there. If their support is contingent upon your attitude, that's very sad.
You do count, even when you can't always count on your body and mind to do what you want. You do count, even when people walk away because you no longer fit in. You do count.
You can still try to touch the sun, even from the underground.