It was a good dream. In this dream, I owned a small, modest house in a quiet town. I sat beneath a tree and sipped hot cocoa under the stars. I worked hard as a teacher and served my students well. I paid my bills on time. I helped my neighbors. I pulled on rain boots and walked my dog in all kinds of weather. I was able to take care of my husband when he got sick. I saved for retirement. I paid my taxes. I wrote stories after dark and even sold a few. I never became rich or powerful or famous, but I acquired the kind of stability that, coming from an abusive home followed by an abusive marriage, I had never known.
It was a good dream.
But it is not the world I live in.
I still pay my taxes early. I still help my neighbors. I work hard as a part-time English language teacher. And I pay all my bills on time. My credit is stellar. I put money away for retirement each month. Every day I clean the litter boxes and brush our cat. I do my best to take care of my sick husband.
But I am also disabled. It’s hard for me, even five years in, to say that. Ableism runs deep and takes a lifetime to unravel. For most of my life, I was an athlete. A trained dancer. An amateur runner and weightlifter. I saw my first nutritionist at age 12. Spinach, egg whites, and a good pair of running shoes have always been my friends. None of it seemed to matter. At 35, my health went down for the count, and it has never made it back up off the mat.
I still lift weights sometimes. I still walk and do occasional jogs. I still eat healthy. But if I’ve learned anything, it’s that there are no guarantees in life. And anyone who tells you different is peddling lies. Comforting, consoling lies that gift you a sense of control, the reassurance that it can’t happen to you. I am here to tell you it can. Genetics, environment, trauma (from racism, poverty, assaults, or abuse), and bad luck do most of us in. If you are supremely lucky, you make it to 88 in spectacular health, and organ failure sets in quickly.
I’m not supremely lucky. My systems started failing in my thirties. Now, at 40, my faulty neurological wiring has precluded full-time work. Even basic household chores are difficult to do consistently. But because I can still work part-time sometimes, I cannot qualify for disability assistance.
And that teaching job I have? The master’s degree is something I’m still paying off. And will be for years yet. Even after consolidating loans and selecting the most economical repayment plan, the monthly payment is 25% of my current gross pay. Because of that pesky disability-impacts-my-ability-to-work problem.
Back when I could still work full-time, albeit only from home, I looked for other jobs. Ones with benefits. Salaries. I applied. I even interviewed. I didn’t get them. I don’t know why. People usually said I was a strong candidate and left it at that. Which means nothing.
I’ve also tried to work out in the world since my chronic illness hit. I tried hard. But it tanked my health such that I became unable to work at all for months at a time. At my doctor’s orders, I had to quit. Which hurt our finances in a worse way. I couldn’t walk down the street. I couldn’t reliably get out of bed. So here I am, working from home, irregular and unreliable hours for much less pay and no benefits. An independent contractor not by choice but because that’s the only deal I can get. It’s the deal that makes it possible for me to be upright, at my desk, and capable of reading text most days of the week. But it’s not a deal that pays well. Or even enough.
My husband, too, has become disabled now. Has been for going on eight months. He’s still able to do his job from home, and his boss supports that. We feel grateful, lucky. We have no idea what we would do without his income.
But the medical bills for his treatments have tallied up. We have excellent insurance, but the copays for hospital visits and scans and specialists still keep coming. They don’t count towards the deductible. This is true of most health insurance in America.
I’ve put off my own treatments as long as possible, hoping that it would compensate for the new medical bills. His doctors had assured us that by August, he would be much improved. As we enter the summer, though, that much-anticipated progress has yet to materialize, and his healthcare team is still doing detective work to determine why. We are having to face that we just don’t know. When will he recover? When will he be off crutches and in less pain and able to stop all these treatments and new prescriptions? We just don’t know.
My own health has suffered from delaying care as well as the added strain of more household tasks on top of the job I can barely keep up with. So now, for a few months at least, we’re looking at easily doubling our monthly medical bills.
We were on track to pay off our debts in four more years and have saved for a house down payment. Now? We will have to begin adding to our debts unless we move.
But move where? And how? How can two sick, disabled people who can barely keep the dishes washed and their laundry done manage to pack up and move house? And apart from all that, my husband can’t give up his job (which provides our insurance and allows him to work from home during his recovery) or leave the medical team looking after him without risking disruptions to his care and recovery. So we are locked into one of the hottest housing markets in the nation. The average home price in the Seattle area is upward of $837,000. The average rent is $1,900 a month. About an hour outside the city, we have a spectacular deal at $1,430 a month. But we can no longer afford it.
Our options are few. A micro-apartment (a glorified dorm room). Renting a room in a friend’s house. Renting a small studio apartment. Or moving across the mountains to towns where the rent is lower, but my husband would have an hours-long commute once his doctors clear him to return to the office. An RV in an RV park. A tiny house parked illegally in a back yard somewhere.
None of these offer long-term housing security. They are also complicated by the fact that my husband has been given doctor’s orders to steer clear of children and anyone else exposed to unvaccinated people. So renting that room from a friend? Not a great idea for my husband’s survival. And everything else? It takes money up-front. Which means raiding what little is left in our savings after eight months of pet emergencies and my husband’s lengthy treatment for his pulmonary embolism.
We had prepared for all of this financially. We just hadn’t prepared for it all to happen at once, then to continue indefinitely.
We are left with no good choices. One resource that offers financial guidance for adults with disabilities lays out our situation frankly:
Because earning more is rarely an option once you acquire a severe disability, the goal is to “carefully manage limited financial resources, balancing sources of income with expenses, and may require difficult adjustments in one’s standard of living.”
That’s a euphemism if I’ve ever heard one.
“Difficult adjustments in one’s standard of living” means completely rethinking the emphasis our capitalist society places on autonomy and independence. It means rethinking what home looks like, what independence means, what choices are reasonable.
This is how the American dream dies for many of us. One in six Americans have medical debt. And of the hundreds of thousands who file for bankruptcy each year, around 60% cite medical costs as a contributing factor. Slowly, little by little, the bills whittle away at the cushion of three to six months’ living expenses. The medical conditions add up, often exacerbated by poverty or trauma or just rotten genetic luck, by a failed healthcare system, and by the stress of a society that expects either total self-sufficiency or total incapacity. That, in turn, eats away at one’s income. Which in turn makes it harder to pay the bills. And so you have a choice: Start raiding the retirement accounts, or build up more debt.
And so we plan to move. Somewhere cheap. Somewhere we can weather another few years of this. We understand we’re lucky to even have that option. Unless the doctors uncover some other, awful condition that helps explain why my husband’s recovery isn’t following the predicted trajectory. And then we do this dance again, taking it from the top. This time with even fewer resources.
Welcome to being sick in America.