(Originally posted November 2008 at three rivers fog.)
I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.
My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.
But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.
Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.
God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”
I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.
This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.
And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.
Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.
That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”
It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.
Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.
But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.
Which means you don’t get stronger. You get weaker.
“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.
Say, all you sick people out there: does any of this sound familiar?
Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?
But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.
Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?
Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.
When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.
It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.
Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not
11 thoughts on “Second Shift for the Sick”
Wonderful piece! Agreed all around, and will be sharing. Glad to see a bingo card for invisible disabilities!
Um. This may be one of my favorite posts of yours. It dovetails with some of my thoughts (in an upcoming post) on military health care and how much work goes into the patient side of it.
.-= OuyangDan´s last blog ..Observed =-.
In my head, the minute I read this back in November, it went down in history as a classic post.
I agree with Chally and Ouyang Dan, this hit me hard when I first read it, and it did just now, again.
This is all way too familiar to me.
Thanks for articulating it SO well!
.-= Fe´s last blog ..Dear Internetz… =-.
Oh yeah: definitely one of my favorite posts… Whenever I have been faced with the “Oh but if you just did X, you’d get better” contingent, I wondered why they couldn’t just reach the logical conclusion that if I COULD do X to feel better I would: It would certainly be much less work than I am currently doing, just to stay alive.
.-= NTE´s last blog .."I Love the World/And I Want to Lay Down" =-.
Thank you. This post means a lot to me.
Thank you. As a woman diagnosed with chronic PTSD as well as the mother to a disabled son, this means more than any words could convey.
I just followed a link and read this, and I am so glad that you wrote this. When my son was born with severe internal defects, I suddenly had a full time job dealing with the insurance and social security offices. I learned very quickly that I had to monitor and triple check every aspect of his benfits and care so someone else’s mistake wouldn’t cost us extra money or deny us a treatment or service.
My brother has Type I Diabetes, and is supposed to get one eye exam every year fully covered by his insurance. Every year, he has to pay out of pocket when the claim is denied. Then he spends around 6-9 months teaching the insurance company how to read his policy. They finally pay up after he has sent them letters from his doctor (“Yes, the patient is STILL diabetic”) and argued with multiple levels of insurance reps. And then the process starts all over, because it’s time to schedule his next eye exam!
At school, neurotypical students go through with no problems.
The school offers “disability services” – seems easy enough?
Requiring extra time, and large print exams, I got the doctor to write a letter, send it to the disability services office. Denied. Why? I guess they didn’t like that doctor. Go find another one. They lose the file. Bug the doctor for yet another letter. Takes 2 months, at which point, I’ve already taken, and done poorly on, one full set of exams.
I guess the school and I have different thoughts on what constitutes disability “services”. The message here, if you’re not neurotypical, don’t even bother.
Thank you, as always, Amandaw.
As far as I’m concerned it’s just a pure fact to never call medicaid/medicare/social security on a Monday, Tuesday or Friday. You will be on hold for at least an hour, the first person you talk and explain the issue won’t be able to do anything about, she will have to transfer you to speciality, and you’ll be on hold from probably another half hour.
For those of us who have cell phones and ONLY cell phones (could not afford landline and cell both, and being disabled, living way out on lonely country roads and having an old car, cell phone is critical) and can only afford very limited time, this is a bloody nightmare. I wish cell services would make 800 numbers free like they are for lands.
Oh, and my local medicaid office? I have to reapply every six months, hand over a mountain of paperwor, and invariably something that was supposed to be there didn’t get faxed over or was lost and instead of saying “could you bring X in we don’t have it.” They CANCEL your medicaid and you have to go over this crap ALL OVER AGAIN.
I have actually developed an anxiety/phobia issue about talking to these people at this point.
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