I’ve been diagnosed with a daunting-sounding disease. I’ve visited so-called disease support groups, and they’re mostly full of complainers competing for who’s had it worst. I don’t know why they are called support groups—I don’t know where one finds “support.” Meantime I just feel terrible about myself, worthless. This has less to do with my disease symptoms, though they’re certainly unpleasant, than with the fact that I’ve had to stop working and go on disability. My job wasn’t always a dream, but I felt valuable, or at least acceptable. Now I feel erased. And I’m scared. What will happen to me—to my body and my life?
What is a job? It’s a spot on a shelf in a market. If our bodies or brains change so we can’t make ourselves fit and we don’t sell, we are “failed.” We are failed products.
American culture is Protestantism, which is all about work and its inherent value, and wealth and its inherent value (and the body and its inherently suspect nature). Work and wealth convey virtue. So those who can’t work lose social value, and those who start out poor or become poor are morally demeaned. The body—always suspicious even when ideal—is demeaned if it deviates from the ideal. (Just read the first fifty pages or so of “The Protestant Ethic and the Spirit of Capitalism” and you’ll get the gist.) It really got going with industrialization—factories. People were no longer able to make a living in farming or home-based trades. Instead they had to take “jobs,” a new thing where they had to leave home every day to work to get money. In factories if they weren’t lucky. In offices if they were luckier.
When you can’t do any job, modern society—which is a cult of work–has no place for you. The market is what assigns value, and it now assigns you no value. Back in your regular job, you got props from colleagues for being productive and reliable and maybe even brilliant. Or, maybe you didn’t get that, and you felt resentful or alienated. Many colleagues and clients may have loved you. Or, you didn’t feel loved at all. But either way, evaluation came from others. Yes, you won’t get all that good stuff when you’re no longer there. Also, any bad stuff? You won’t get that when you’re no longer there.
Plus as Rosemarie Garland-Thomson says, “Women with disabilities, even more intensely than women in general, have been cast in the collective cultural imagination as inferior, lacking, excessive, incapable, unfit, and useless.” So there’s that.
Shit happens. I realize this is not the life you “planned.” This is the real one, which may have already been brewing awhile for you, in your genes and flesh. And yes, you’re feeling grief. But the thing is, it’s sometimes grief for something you actually didn’t securely have, grief for an imagined future. It’s like longing for a lover who broke off with you. That too was grief for evanescence. Grief for a job that only accepted you as long as you fit the required list.
So whether the job was your creative calling and people respected you and you wore snappy outfits, or whether you got stress sweat on the smock you wore only for work and people were back-biting and the assignments were boring, you’re now sad for this loss.
At this point you may also be arguing with your medical insurance people, your disability carrier, your doctors, your family, your sex partner, your friends. They all have interests that may not coincide with yours. However, this has always been true. You’re just going to notice new ways this is true now. Consider your vulnerability, your tendency to waver into fear or defensiveness or collapse, but stay solid. Don’t be pushed over by them.
See, Salt-seeker, this is to be expected. The rules of the universe, where everyone has their own agenda and wants to use you to fulfill it, have not changed. You just may not have known this because you were sailing on your brilliance, energy, ability to fulfill their expectations, and maybe some youthful beauty. Whether your peak was short or long, whether you are twenty-four or fifty-four, that was childhood, the big rock candy mountain of unicorns and endless cheesecake, and you’re not in it anymore.
I don’t want to get all woo-woo here. But there is sometimes destiny, which some call karma. Cause and effect. Sometimes it’s the karma started up by other people, like toxic-polluter industrialists who dumped their pesticides on you. Sometimes it’s the karma in your genetics. Sometimes part of how bad you feel about yourself is the karma of your drug-addicted parent who left you feeling abandoned and anxious. Americans hold a powerful faith that we can design and control our lives, but this is to a huge degree not really the case. We’re actually tiny leaves whooshed about by powerful winds. But it’s your destiny to receive this and respond. You can get passive-aggressive and humble-braggy whiny, like the people in the support group you were talking about. But that will not help you build power. You build power by walking straight into the uncertainty, fear, and physical unpleasantness and feeling it. In a very matter-of-fact way. Get matter-of-fact about physical pain and rude insurance people and supercilious doctors. You build power by locating networks of people who know things. No, there’s not much “emotional support” at those meetings, because most people there are desperate and empty. But you can still use the groups to ask practical questions and see who seems smart and on top of it. Then call those people later. Ask them specifics in a calm, cheerful, non-needy way. Talk with them for fifteen minutes and then thank them profusely and end the call. Ask them to refer you to other places for help. Then later maybe you can return the favor.
This is the actual value of the groups. As for the behavior you find so annoying there, do keep in mind that all these people are dealing with feelings and situations like yours. All these people have been kicked to the curb and lost their careers and are wandering outside the market next to the dumpsters, dodging the rats. Like you. Whether they are loaded with money or near destitute, whether they’re annoying drama queens or Buddhas, they are people struggling as you are, grasping to cope. Loss of ego boundaries often goes along with loss of body boundaries, as insubordinate flesh flips out of its own chaotic accord and the ego flails to rein things in. Some people may compensate for loss of career status with desire for attention. Some express their anger with depression, others with histrionics.
Right now, do avoid looking at the long term. Right now, do avoid obsessing. What will help is experimenting with how to get through each day. Your job is to figure out what the rules are. What and when to eat to feel better or at least not worse, what movement work to do, what medications to take and how much, which of the seventy-five therapies that you hear of are useful and which aren’t. Consider lots of things, both scientific and flaky. When something does nothing for you even though other people swear by it, resist going into a downward spiral and feeling uniquely fucked compared to them. Certainly you aren’t unique, and that is actually great. It’s great because if you weren’t like anyone else, if you truly had an issue no one else did, you wouldn’t be able to learn from other people. Sure, there are people who get their rocks off playing narcissist and claiming nobody has a particular problem they have—and those people are making a big mistake. You don’t want to be them. You want to be the person who notices how you are like someone else, with a problem they have dealt with well. And then you do that thing.
You will feel sad and frightened. It’s no wonder! But you’re right there with a lot of other people who don’t know what’s going on. Don’t confuse your discouragement and loneliness and pain with thinking you are somehow doing this wrong, that you are handling your life—in the form it’s taking at the moment—badly. That’s the Protestant ethic talking again, and what people with disabilities call internalized ableism. It’s also comparing your insides to someone else’s outsides, too. Your body malfunctions and feels terrible. And yes, some other people have a spring in their step and wear great clothes and are still able to earn the money to buy them. But we’re all vulnerable. We’re all damaged. (It’s possible there are people who aren’t damaged. I, however, have never met one. I only know damaged people.) We all have sadness. And some of those well-heeled income-producers with glamorous jobs also have invisible disabilities they’re cleverly camouflaging under those cool threads, or chronic illnesses they’re working very hard to hide. They’re carrying anxiety and shame about their wrecked intestines or their tight lungs, or their face blindness or their ferocious cravings for a drink. They’re faking it a lot. They’re taking a ton of prescription medications so they can keep working. Some are carrying terror, too, that if their bodies break down any further, they’ll lose their jobs. And yes, some people really are healthy, have sane parents, are having wild erotic sex, and work at fun jobs that gift them with gold-plated health insurance. But as you’ll see once you’re at this game long enough, many of those people will look slightly haunted when they hear of your illness. Because they are secretly scared to death of what you represent—that they too could fall from their lucky balancing spot, and crash. Notice if they act chirpy and stiff around you, or seem oddly cagey. For all your feeling worthless when you feel them distancing, you may care better for yourself not to feel you have to socialize with people who put out those vibes.
Your job now is not to reassure other people. They are feeling loss of your familiar identity, perhaps, but they’re going to have to deal with their confusion themselves. Your job also is not to pretend this isn’t happening, to go back to your old work identity and erase this piece of history. That is just more avoidance—of your real existence, of biological reality, the great unmentionable of American life, in which humans are framed as products and worker robots—instead of creatures of flesh and feeling.
You don’t know yet what is going on (and likely you will never entirely know what is going on, by the way). Tell yourself this—“I don’t know what’s happening! I don’t know what I’m doing!” When people ask, tell them that, and let them freak out. That violates the narrative (they have to get everything under control!), and also reminds them of the terrible truth they furiously avoid (they don’t know what they are doing either!). Oh, well! You don’t have to protect them.
So, Salt-seeker, it’s fine to “fail.” So what if you’re a failed worker? As Pema Chodron says, the task is to learn to live with uncertainty. “To be fully alive, fully human, and completely awake is to be continually thrown out of the nest. To live fully is to be always in no-man’s land. To live is to be willing to die over and over again. Fail, fail again, fail better. It’s how to get good at holding the rawness of vulnerability in your heart.”
Even though you have drawn identity from work, all of this is a fiction anyway. It sounds as though I’m saying it’s a lie, but I’m not. It’s just that you have space to tell a new story. But you won’t be able to do that until you make space for the original thing, your biology. It was erased—when your body “worked”–and now it’s demanding attention and it’s not going to let you build a new story until you discern its new rules and work within them.
Your biology may feel like a real tyrant for a while. You will probably not ever “overcome” it or “cure” it or “fix” it. You’re going to need to study it and negotiate with it. You can then find ways to own it, and make doing that, as the performer Neil Marcus says, into an art. Your cracked body or wacky brain then morphs into something worthy. It’s still going to be shitty a lot, but so what? It’s OK for things to be shitty. That is simply normal life, and worth embracing.
Your opportunity now—well, eventually—is to develop new colors in yourself, and with them to paint a new identity. So here are a few things I’d like to suggest. Remember that girl you were at eleven or twelve? Not ten, and not fourteen, because by then you may have been tossed in the throes of junior high, a tsunami of mean girls, gym class, comparing clothes and bodies and what cars parents had, and all the stuff that makes teenage girls hate themselves. And lose themselves. But eleven or twelve is an age where you’re really growing into yourself, but male supremacy and impossible expectations of females haven’t yet smashed you flat. Look there, toward that girl. There was something authentic in what she loved. Pay attention to it.
Also. Remember how when you got kicked out of the market for failing, and then you ended up in the parking lot wandering around? You are not alone out there. There are other people out on the asphalt. Old people. Homeless people. People with significant physical and mental “impairments.” People whose physical or mental maintenance requires so many medical appointments, so many therapy activities that take up so much time, that they can no longer use that time to go to jobs. Stray cats, too. Beyond the parking lot there are trees.
When you fail in America, you have the opportunity to see more. More sorts of people, and more other beings, more of the living world. You get to expand your ideas about value. To see that market value is a limited concept of human value.
So the love we think is lost Things that never happened, stranger Ooh, late last night we argued, when you weren’t there All of my disappointment screamed into the air Just about to fall into the deep hole that I dug Saw myself pretending with a shovel and a shrug It was a big nuthin’, big nuthin’ Wasn’t it a big nuthin’, nuthin’? Tell firstname.lastname@example.org.
Susan Nordmark’s essays, poetry, and fiction have been published in Entropy, Peacock Journal, Draft: The Journal of Process, Porter Gulch Review, Matrix, and elsewhere. She studied anthropology and evolutionary biology at UC Santa Cruz and Harvard, and now lives in Oakland, California.