The fibromyalgiac pixie dream housewife, or how art, disability and tech marry.

This is a post I’ve owed some of my readers for a long time, on a subject I’ve been mulling over for years.

How about a cold open?

“I- I’m running out of energy. I’m sorry…” my husband said.

We were in the electronics store in the mall near our Berlin apartment, trying to figure out what kind of landline phone would plug into our DSL. The staff were not so helpful. My husband was the one who knew about the weird German dsl-sockets-right-in-your-wall support phone lines, but he was too exhausted to think about it. “I don’t want to start projecting anger on you that’s really about being tired”, he said. (My husband’s pretty great, right?)

I knew he had gotten less than four hours of sleep, because of his circadian rhythm disorder, his sleep apnea and the pain of his Perthes.

And as an on-the-spectrum person, as we call it these days, being in a mall is an overwhelming burst of overstimulation for him. I said, “Of course, sweetheart. You go home and rest. I’ll find a phone on Amazon. I’ll just run some errands here and bring you dinner when I get home.” (I’m pretty great, right? Only took three marriages.)

He headed for the subway and I went off down the shopping plaza, hoping I could get a few of the ever-present dozens of things we need for a new home.

My feet hurt, my legs hurt, and my back hurt. After I had stopped at four stores, following my complex, constantly updating internal map of where which things can be had cheapest, everything else hurt too. But I was thrilled, because I’d found a heated pad for his sore hip, and the kind of laundry bins we needed for the bedroom and bathroom, way cheaper than Amazon. And a really small screwdriver to take apart this one table I got on eBay, and a great price on superglue, and a flashlight, and work gloves for one euro.

My last stop was the art supply store, where they know me now.

I took the elevator up to the first (second) floor, because my aching knee and asthma mean that stairs are a nightmare. Then after I got my supplies I took the escalator down into the U-Bahn and made my last stop. There is a noodle shop in most Berlin subway stops, but they vary widely in quality. The one by our house is not so good; the one at the mall is excellent. So I ordered ein grosse hahnchen noodlebox, which my husband has been craving lately, and asked the lady to top it with the sauce just the way he likes it.

I thought, I do a hundred little things to care for my third husband every day, and he does one enormous thing to care for me.

I do all the work of our lives, and he earns the money to support us.

It wasn’t always this way. When I left art school I was making 40k a year as a courtroom artist, and when I lived with my first husband back then I was the breadwinner; he was still in school. In St. Paul in 1993, 40k was like 175k in Oakland in 2014. But during the two years I lived with him, while I worked for DC, my depression finally began to change my body in ways it hadn’t before.

I gained weight and started to develop all the kind of inflammatory pains and problems that have plagued me ever since- drastic worsening of my asthma, back pain, chronic headaches, stomach trouble from pounding Advil. Worst of all, my lifelong sleep problems spiralled out of control. When I took my friend Victoria to the airport after our wedding, I almost jumped off the upper balcony at MSP onto the marble-floored concourse.

In the twenty years of recurrent severe depression that followed, my health gradually got fucked up. I hurt my back at a food service job, became hypothyroid, my weight yoyo-ed;  I went through endless doctors and physical therapy and tests and medications and support groups. I called the suicide hotlines night after night. One thing you can always say about me, I don’t like being sick, and I have always tried so goddam hard not to be.

But the thing is, I am sick, no matter how much I try to fight it. Just like I am an artist, no matter how much I try to fight it.

I’ve tried not being an artist; I’ve tried having a job. Twice I stayed at a single job for two entire years. The first time I only made it because the last six months, I kept a calendar in my purse. Halfway through each day, I’d draw one diagonal; at 5pm I’d complete the X.

One job made me so sick that my second husband had to drive into SF to get me because I’d collapsed outside the endocrinologist’s, too hysterical and despairing to drive home. Another mercifully laid me off when outpatient treatment was insufficient to keep me off the suicide hotlines and I’d finally gotten a circadian rhythm disorder diagnosis from the Stanford Sleep Clinic.

In the 18 years I lived in the Bay Area, I had 17 jobs- 8 food service, 7 technology and 2 admin.

I was fired four times and left in a haze of health problems and frustration on everyone’s part half a dozen times. I was on unemployment for six months twice and for a year once, and on disability for three months. This isn’t the picture of a solid earning history. I’ve never earned as much in my life again as I did at 26. Most years I was lucky to clear 20k. I fucking tried though!

Much of the time I was married to my second husband, a highly-paid tech worker, and his income supported us. He worked a mind-blowing, horrific 80 hours a week, and I ran the business of our lives. I dealt with health insurance, car repairs, groceries, buying a house, trips to the vet. My under-employment was actually the weft running through the warp of his income, creating a space in our lives where someone had time to be home for the plumber, organize the receipts for the tax preparer, pick up the prescriptions.

The crazy thing is, I began to realize there were lots of marriages like my second. Sick artist wives and highly-paid men who worked too much.

I knew more and more creative women, as the Bay Area became more and more unsustainably expensive, who just couldn’t make enough money to even make a dent in their household costs. Women who had attracted their tech worker husbands when they were vital and healthy, creative and exuberant. Who had gradually been beaten down by their inability to earn any money at the work they were good at, been stressed by endless low-paying odd jobs, and eventually become crippled with health problems. Beautiful, gifted women who basically retired and became housewives, because someone has to do the work of managing life for two people.

The Devil’s bargain of high-paying tech work meant that the husbands (and I say husbands because I first saw this in digital effects, where there were just really practically no women) worked inhuman hours to provide income for two people. Plus, they were providing health insurance for two people- with my pre-existing conditions, I was uninsurable and dependant on my husband keeping a job with group coverage.

One person had time, both people had just enough money, and neither got to enjoy each other’s company.

As the wives got sicker, they spent more and more time and energy dealing with the healthcare system. Many of us seemed to have invisible illnesses- depression, chronic fatigue, fibro. Luxury, middle-class illnesses that didn’t require surgery and didn’t earn any sympathy. Our unemployability grew by leaps and bounds.

So how do people stay married, in a situation where a partner who has powerful creative drive spends most of her time administering a lifestyle that ameliorates the stresses of the spouse who has to work impossible hours? I didn’t; I was a miserable fucking bitch and my husband swallowed it until he became a crazy person with resentment and then left me.

I’d invested seven years of my thirties mostly doing whatever work would bring in a bit of money to help the household, and in the process had become more and more ill.

I was left flat-footed when I was hit by the divorce truck, and literally the only reason I did not die was my mom and my friends, who sustained me and protected me and cared for me. I came out of the divorce so badly- community property isn’t so great when your house is underwater- my therapist cried and my lawyer waived half her fees.

The really crazy thing is, I married another tech worker.

Why would I do such a thing? Insanity is doing the same thing and expecting different results. I did it because I met someone, when I was working at a cafe for $10 an hour and living in a friend’s basement in West Oakland, who I could negotiate and build a partnership with.

I met a fellow traveller, a white cis man who had experienced huge divots in the lawn of privilege, thanks to a lifelong sleep disorder, crippling health issues and the same struggles with employability and functionality I had. I met an awkward Aspie guy who wanted to have a transparent relationship where we would be ourselves, craziness, devastating weakness and all. It helped that I spent the last year of my second marriage reading every book on marriage ever written and beginning to practise a sacred vow of trying not to be a fucking bitch.

It helps that my third husband is as sick as I am, and as invisibly sick.

He understands looking ok and not being ok. He understands weakness, and he doesn’t judge me for getting up at three in the afternoon.

I finally found a medication that put my depression into long-term remission three years ago, and my health pretty much immediately collapsed. Dumb stuff, like Benign Positional Vertigo, anemia and bloodspouts from fibroids, hypothyroid issues. Painless, luxury illnesses; I felt like a Victorian lady, faint and needing to rest. And chronic fatigue, compared to being depressed- well, it’s like you were being dragged behind a truck on a gravel road, and now you’re just being dragged on the regular paved road, and it seems not bad at all. I worked 20 hours a week for two years of it; I only gave up and went on disability when I couldn’t drive to work because of the BPD.

But my husband completely supported my choice to work part-time rather than full-time, and our transparent, transactional clarity around the value each of us brings to the household made all the difference.

Long before we got married I felt married. I felt married the night I called him crying hysterically from my startup job because my sleep problems were making me insane. He said, “We’ll get through it.” And I understood that my problems were his problems, and his problems were mine. I married his health challenges, and the future of health challenges we’re partners in managing. He married my work, and my sense of purpose as an artist, because he believes in the value of giving me time to make my work.

Although he came to the marriage with a much higher earning capacity than mine, I didn’t want a lifetime of bearing that responsibility ahead of him.

So early on we began to talk about a future where we could do things differently, a strategy for creating a safety net that would hold our health problems and possible earning challenges. It was clear, based on many marriages I’d seen, that the tech worker/sick artist marriage could work in SF. When the sick creative partner wanted kids and had them, for example, nobody seemed to judge them for “not working”. But it wasn’t going to work for us, with a sick tech worker and a sick artist.

We needed a social welfare state, and we settled on Berlin. Here the universal health care cost is tied to your income, and includes long-term care.

We made a plan to get here, a year-long process, and part of it was agreeing that I wouldn’t work at all that year after my disability ended. I managed the insane boatload of logistics while he worked. We nearly foundered at the end, because he got so sick from work stress he had to go on disability too, but I managed the hell out of that, getting state disability payments arranged, driving him to the doctor, getting him to DBT class every week.

Our loved ones saw what we were doing, trying to get ourselves to a place where we could live sustainably. And they made it happen for us.

In the terrible, crazy weeks before our wedding, when my guy was so sick I despaired, our friends and family made sure we had the resources to keep working on our escape plan. We were sustained by the care and support they gave us, and somehow we kept it together and got on the plane. It’s taken seven months, incalculable amounts of paperwork, and two companies, but Monday my husband got an employee visa. Tuesday I filled out the applications for health insurance, and yesterday he got the welcome letter from the insurance company.

It’ll take a little longer for my coverage (which is free!! as a dependant); they want proof of my low earning capacity! But we’re on the way. Ultimately I hope to get on the KSK anyway, an amazing program whereby if you are an artist, the government pays the half of your health insurance that an employer would normally pay. We are looking forward to getting our Darth Vader apnea masks with a weird, delighted glee, and I simply can’t wait to get rolling on his hip replacement, which could improve his quality of life enormously.

Recently, I read a couple of articles that said one key to marriage longevity is really simple. It’s saying “thank you”.

We are in good shape, because we thank each other constantly. He thanks me for rubbing his sore legs, for bringing him dinner, for doing this and that and the other little thing. I thank him for the enormous thing, for getting up and going to work so we can have health insurance, and giving me a life where I can make art. It’s the best we could do for each other with the tools each of us has, and it works because we agreed to it. It seems pretty damn good these days.

 

2 thoughts on “The fibromyalgiac pixie dream housewife, or how art, disability and tech marry.

  1. Pingback: How Patreon has changed my life as an artist. - ChipInHead.com

  2. Pingback: Longterm remission and recovery from severe depression IS FUCKING POSSIBLE. - ChipInHead.com

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