I’ve known since I was a very young child that I wanted to do nothing but read. I’ve also known since I wasn’t much older that I wanted to be a writer. The problem has been that I’m too attracted to reading because it excuses me the hard work and (frankly) terror of sharing my work with the world. Mine is a case of buried talents.
At this particular moment in time, it’s also a case of feeling like a buried person.
I keep hoping that somehow my old self will reawaken and that I’ll ride my same old afterburners into finishing the writing projects that languish on my laptop. The problem is that my afterburners–the chemical soup of drive, grim humor, and sheer tenacity that served me well for years–have been burned out. They’re not just charcoal, they’re halfway to diamonds. And on the rare occasions that I manage to kick my afterburners into breathing fire–because, fun fact, diamonds can burn–they consume a non-renewable resource.
The fuel they’re burning is me.
I’m a fraction of the person I’ve been. The exhaustion isn’t just real, it’s palpable. On days like today, as I sit here in front of my laptop and type, I feel the exhaustion pushing me into the seat…as if an elephant has seated itself on my lap and chest and all I can move is my eyeballs, my brain, and the tips of my fingers.
I don’t have COVID. I have MS (and Hashimoto’s, and I survived OM2)…but I’m beginning to think I’m not surviving as well as I thought.
Yes, rationally I’m aware that I’m a poster child for fatigue, malaise, and medical PTSD. Yes, rationally I’m aware that I’m clinically obese and don’t eat as well as I should. Yes, rationally I’m aware that all those problems are (on paper anyway) “treatable.” What I’m also aware of is the fact that I have nothing but exhaustion where my gumption used to be, and nothing but a jagged choking sound where my in-breath used to be. It’s not because I’m virally sick–it’s because I’ve been at the edge of crying since March 2020. Too many exhalations are sighs. Too many in-breaths catch in my throat. Living through a pandemic in a healthcare family has been just as bad for my health as all the other junk I already had.
I don’t have a single one of my best coping mechanisms available to me at the moment.
What I have is an unfortunate inability to meditate without inducing a migraine…and the only way to head off that migraine is to eat a bunch of sugar and painkillers, and drink a bunch of tea. None of this helps my overall situation.
What I have is the oddest, most uncomfortable sensation that someone has grabbed all the connective tissue in my elbows, chest, shoulders, and neck, and is slowly tightening it all. There is no way to head off this sensation, as far as I’m aware, because it has nothing to do with actual bodily tension. It’s a prototype of the MS hug, and I can’t begin to describe how claustrophobic it makes me to think that someday I might not be able to get away from this sensation at all.
What I have is a to-do list about a million miles long, and all I can do is watch it get bigger.
What I have is gratitude that neither my kid nor my husband is awake for the day yet, so that I can just be miserable alone and not have to perform for them. I shouldn’t be grateful for this…because, if my husband and kid are doing what they’re currently doing, that means we’re still in a pandemic.
What I have is the tyranny of online connectivity, because entirely too many times per day I’m being called upon to virtually parent multiple kids stuck in abusive and para-abusive homes. I have to throttle my sense of impending doom while listening to them vent via Discord. Hell, I have to distract and in some ways entertain them…because in many ways they’re doing worse than I am. Even in my current state I have to make them laugh, or they’ll spiral. And despite everything I’m doing, they’ve still ended up in hospitals under psych hold, some of them multiple times, since March 2020. Some days, even my own kid is perilously close to joining his friends.
What I have is a glimpse of what life as a clown must be like: to work so hard to make your audience smile when you’re the one who has to hide your expression behind face paint.
Is this the livelihood I wanted?
The concept of Right Livelihood must have been mind-blowing to the Buddha’s first audience. “Wait, it’s not enough for me to earn money to put a roof over my family’s head and food in their bellies? I also have to make sure that my livelihood isn’t harming anyone else? Who has a choice in how they make a living? Maybe the really rich people do…”
I’ve heard that from more than one direction during the pandemic: “People keep thanking me for working in healthcare. It makes me so mad. Don’t these people realize I don’t have a choice? We’ve got families to take care of.” The myth we’ve been telling ourselves is that healthcare workers are somehow nobler than everyone else–and many times, they are. But they’re still human, they still have wants and needs, and they still have faults. And lemme tell ya, the last thing on Earth they want to be doing is still working healthcare in a pandemic, two years later.
The public tells itself that healthcare workers are noble because that perception excuses the very real need for healthcare workers to be treated better. A “noble” person can be lauded and thanked, while still being abused by their employers and their patients. It’s victim-blaming at its finest: “oh, they knew what they were getting into when they chose a healthcare career.”
Lemme tell ya, nope. None of them did. Not this.
Many people simply fall into something resembling a career and make the best of it. I spent years bouncing in and out of jobs not because I wanted them, but because my first job out of college happened to be temping at a housing corporation…and every interviewer after that judged my qualifications based only on whether the job I was applying for had anything to do with housing. Nearly two decades later, an interviewer for a shipping company told me she was “taking a chance” on me for an entry-level position “because shipping doesn’t have anything to do with housing.”
I worked the mail room, for fuck’s sake. I worked the phones. I worked on their database. I worked on their annual report. Absolutely nothing I did for that corporation involved housing in any way, shape, or form. Yet “housing” came to dominate my resume for more than two decades after I left college, just because that happened to be my first temp job.
Now there’s something they don’t tell you about making a living in the US: unless you’re one hell of a charismatic interviewee, your grades won’t matter. Your actual work experience won’t matter much, either. The quickest, dirtiest descriptors of your past employers will override everything–a sketch of your work history based on nothing more than perception. The perception of your work experience will dominate your future, based on the damn stupidest things.
And here’s something they don’t tell you about MS: there will be days that getting out of bed will be the toughest thing you do. This puts “getting and keeping a job” up there on the impossibilites list somewhere around “getting a great night of sleep.” I get through my day (and keep my brain in one piece) based largely on whether or not I got enough hours of broken sleep last night, and whether or not I can nap during my day, and whether or not the malaise or the hug have randomly decided to sit on me like elephants. None of these issues is visible to the outside world. The realities of my life are dictated by damned invisible things–things that it’s impossible for others to perceive.
My husband’s job is invisible to the general public…sometimes even to other healthcare workers. A radiology administrator once asked, completely unironically, “But why did the machine break?” After wasting ten minutes patiently explaining the failed parts and the steps he took to replace them, my husband realized that he was dealing with a very different order of ignorance when the admin asked a second time, “But why did it break?” He had to plaster a neutral expression on his face while he explained that machines, like people’s bodies, sometimes wear out. And that was before the pandemic. Since then, he’s had to explain to his bosses that “unlimited overtime” is simply not attractive anymore. “What’s the good of earning extra money,” he gritted, “if I’m too sick and injured to spend it?”
Being a mom to upwards of eight kids is another nearly invisible livelihood. I’ve had people tell me, “Well, if it’s stressful to you, turn Discord off.” Um…really? You’d leave a kid alone to have panic and paranoia attacks? You’d leave LGBTQIA+ kids alone with their homophobic families? You’d refuse to crack jokes with a kid to keep her occupied while waiting for her dad to quit raging and pass out? You’d refuse to do so little a thing as listen to a kid vent, because the fact that he’s living with a sociopath who throws himself down the stairs in order to blame it on his brother is just too stressful for you to live with?
I’ve been told repeatedly by doctors that taking care of myself is the most important thing I can do right now. Tell that to the folks who expect money to put a roof over my head and food in my belly. Caring for myself doesn’t pay the bills. Hell, being a sympathetic ear to other people’s kids via Discord doesn’t even pay the internet bill.
So, what’s more important right now? What’s the greater good? A paying job that could put a roof over my head and food in my belly? Or caring for myself and others? The livelihood that gives me a paycheck may shorten my life considerably (it certainly would leave an awful lot of kids emotionally in the lurch, including my own). The livelihood that allows me to take the best care of people brings me no money, and I’ve been out of the work force for so long that I no longer qualify for disability.
So which livelihood is actually the “Right” one here?
I don’t think it much matters, because holding down an outside job may have already become an impossibility for me. I think I’ve already got my “livelihood,” to be honest. Caring for people (including myself) is just not the livelihood I wanted. It puts unfair pressure on my husband, to continue to earn a living big enough for all three of us (eleven, if you include all the virtual kids). Caring for others also puts unhealthy attention on what I can’t do, rather than what I can, and that’s hard on me emotionally. But, like working healthcare in a pandemic, it’s something that has to be done, paid or not, respected or not, visible or not, because the work needs done or we’ll all fail.
I wanted to live my life on my afterburners, spending whole days jazzed up on coffee and writing and reading. Instead I receive my coffee and writing and reading on an IV drip, a tiny infusion daily, just enough to keep my soul alive but not enough to trigger the exhaustion and the invisible elephants. And I have to hope that my husband continues to love me, and outlive me. Because without him, I have literally nothing–no way to cover my or my kid’s medical care or food or housing, or the marathon Q&A sessions via Discord that are keeping upwards of eight other kids, some of them in other countries, going through their days.
That’s just not a way that anyone should have to live…connected to safety by a single cord exactly the size of one other flawed, hurting human being.
Yet, given the way the US is currently designed and set up, I’m lucky to live this way…because so many other people have it far worse.
No wonder so many people are resigning.
But resigning isn’t an option for so, so many of us…especially the ones in invisible careers. The perception is that we’re somehow nobler, better, luckier (!) to be doing what we’re doing. The reality is, Right Livelihood is demanding so much more of us than just punching a clock.