Startling in its openness and honesty, The Geek Feminist Revolution will captivate you from the first page with its wit and gravitas, its rage and its joy, its tactical profanity and moving eloquence.
In 2005, I was a robust 25-year-old living in Chicago and working as a project assistant for an artchitectural and engineering firm. In the fall of 2005, I started to lose weight.
This was a good thing, I figured. I worked out a lot. I ate right. It’s just that losing weight got… easier. It was nice. After so many years of working out relentlessly just to stay at a reasonable size, I didn’t have to think about my weight anymore. As the months passed, I started to experience other problems, though. I started to get recurring yeast infections, infections that could only be cured with prescription medications, not the usual over-the-counter stuff. My gums bled when I brushed my teeth. Not just a little blood, but bloody spitfuls of the stuff. I was thirsty all the time, to the point where I could barely survive a 45-minute plane right to Indianapolis without having at least one tea or juice on hand. I honest to god thought I was going to die if I couldn’t have a large drink every hour. And when I got ingrown hairs, they would form huge pustules on my body that had to be lanced and drained. As the months passed, the symptoms got worse. My sinus infections dragged on and on. When I went to various urgent care doctors and explained that I was exhausted all the time and getting weird infections, they said I must just be stressed out. I was so tired, in fact, that I couldn’t get out of bed on time for work. I started to get confused, and had trouble concentrating. My boss had to call me in twice for making data entry errors that I hadn’t had problems with before. I dragged my ass into work an hour late sometimes. An hour late! But I was so exhausted and frazzled I didn’t care; nothing seemed to really matter except sleeping and drinking juice. I also become increasingly hungry in addition to thirsty. I had to eat an extra meal between breakfast and lunch. I was chowing down on burgers and ice cream for lunch… and continuing to lose weight.
I remember lying in the bathtub and rolling up into a sitting position and feeling the bones of my spine against the tub. It hurt. I didn’t have the usual padding there to protect me from the hard tub. It was like being inside someone else’s body. I had a “catastrophic” health insurance plan through my employer, so when I went to the doctor with these complaints, it was always to somewhere cheap like the 24 hour urgent care or Planned Parenthood. I had a $2500 deductible, so everything was out of pocket. I was 25 years old, making $40,000 a year living in Chicago; after rent and paying my student loans, it didn’t occur to me to spend a bunch of money on tests. I was 25! Surely there wasn’t anything wrong with me but stress. I never went to the same doctor, so there was nobody to connect the dots related to my various symptoms.
My body finally gave out one Friday after coming home from Indianapolis for another work-related trip. I stepped off the train and got myself a hot dog because I was so hungry. But it gave me such bad heartburn I had to stop eating it. I trundled home via the bus. I could barely walk up the three flights of stairs to my apartment. I was so goddamn tired. I came home and drank and drank and drank – water and juice and Gatorade. And I peed and peed and peed. It was all I could do to stumble from my bed to the bathroom. I had to grab hold of the couch for balance.
At some point, my roommate and girlfriend at the time found me standing in the bathroom. Just… standing there staring at the door. She brought me to the couch where I apparently went into convulsions and started vomiting. I blacked out and wasn’t fully conscious for 36-48 hours, when I woke up in the ICU and had a doctor patiently explain to me that I had type 1 diabetes, an immune disorder that usually shows up in children, which is why nobody thought to test me for it at 25. Sometime the year before, an immune response from my body backfired, and my immune system started killing the islet cells in my pancreas that produce insulin. I would no longer be able to survive without taking 4-5 shots of synthetic insulin a day and carefully measuring and monitoring everything I ate and all of my physical activity.
What they did not tell me was that having this immune disorder also meant that outside of an employer-sponsored health insurance plan, I was now forever uninsurable. And the medication it took to keep me alive was going to cost me $500-800 a month without insurance. The ICU trip alone was over $20,000, with thousands more in bills coming in for weeks and weeks after I got out of the hospital. Even after my $2500 deductible, I still owed an 20% of that cost. That was *with* insurance. I just laughed at these bills. Laughed and laughed.
Four months later, still recovering from my experience in the ICU and adapting to a life totally reliant on taking medication, I was laid off from my job. To retain the same health insurance plan I paid $60 for through my company was $800, paid for on my own. I had to cash out my 401(k) in order to pay for it, because unemployment was just $340 a week (rent alone was $550 a month). If I went just 60 days without some kind of insurance, my condition would be considered “pre-existing” and I would become uninsurable for 12-24 months *even through an employer sponsored plan.* So I had to find some way to pay for health insurance – health insurance which still didn’t even pay 100% for my drugs. So it was $800 a month for my premium PLUS another $300 a month for the only partially-covered drugs. This was just to stay alive. To keep my head above water.
I picked up temp jobs, and after getting through my 30 days with them, was able to sign up for some shitty insurance that technically covered me (so I wouldn’t fall between plans and get hit with the pre-existing thing), but didn’t pay for my medication, so I was still paying out of pocket for that while trying to pay rent. Credit cards became my friend. I had four of them. Eventually, this situation became unsustainable, and in March of 2007 I packed up all my shit and moved to Dayton, Ohio where I lived in a friend’s spare bedroom, rent-free, while trying to live on expired insulin and checking my blood sugar the minimum amount possible to save on the cost of the testing strips, which were $1 a piece and which I was supposed to be using 7-8 times a day.
Without the temp agency I’d been at before in Chicago, I found myself uninsured once again while trying to rack up the requisite number of temp hours I needed from my new temp agency to qualify for *their* shitty insurance which, once again, wouldn’t cover my medication anyway. So it didn’t make a difference to how much I was spending on drugs (most of my medication costs were going on a credit card at this point). But it did start the “pre-existing condition” clock running again. I only had 60 days to get insured again, but I wasn’t getting enough hours yet to qualify for the new temp agency plan.
I was sick, my medication was working sporadically, since it was expired, and my credit cards were rapidly getting maxed out. I was mostly unemployed and only not technically homeless because I had a friend with a spare bedroom. I just stopped looking at my credit card statements. Being in debt, I figured, was better than being dead. But I knew that if I didn’t get lucky at some point soon, I was going to end up dead.
I signed up with another temp company, but was still 60 days out from being able to use their insurance. I ended up twisting my ankle and had to go to the ER. The bill was $800. When I got it, I just looked at it and laughed. I never paid that bill. I had to go back to the ER again with an issue related to my IUD. That bill was $600. I laughed at that one too, and didn’t pay it.
I could pay those ER bills, or pay for the medication that kept me alive.
My temp company had me working a temp assignment for three months at a local company. I finally went to the temp company and said, “Listen. I can’t pay for the medication that keeps me alive. Either these people need to hire me or I need to get a full-time position somewhere else.” I went to my employer and said the same.
The temp company and my employer got together and – bless their hearts – my employer bought out my contract from the temp agency. My salary was just $32,000, and I didn’t negotiate at all, because I got first-day health benefits. And the premiums were free. Yes, free – the company paid 100% of the premiums and there was no deductible. I immediately ordered new drugs – the drugs that kept me alive – and paid nothing for them.
That company saved my fucking life. My spouse sometimes wonders why I still do freelance work for them, and why I don’t charge them the rates I do everyone else.
It’s because they saved my fucking life.
But because they saved my fucking life, they also got me for a really good deal. At that point, things were so bad I would have worked for nothing. I would have just worked for the health insurance. Their insurance plan was so good, in fact, it was a common joke over there: “Hey, if you lay me off, I’ll work for free. Just let me keep my health insurance!”
But today, that shit is over.
Today, you don’t have to joke about working for a company for free, just to get the health insurance.
Today, you don’t have to juggle eight credit cards to get the medication you need to live.
Today, for the first time in the U.S., you can sign up for health insurance no matter how much money you make, no matter what your health condition. Even if you have cancer, or you had cancer, or you’ve got some shitty immune disorder like mine. You don’t have to go to bed on some shitty mattress in some friend’s basement hoping and praying that you’ll get some lucky break before your expired medication stops working. You don’t have to beg a company to hire you just for the health benefits.
Today you don’t have to pay $800 a month for bare minimum coverage, and cash out your 401(k) and live on expired medication. You don’t have to run up multiple credit cards with medical bills. You don’t have to cry when the bills from the ER come in.
You can go to healthcare.gov and find a health plan that works for you, with coverage starting in 2014. Can’t afford it? That’s OK. The government will subsidize plans for people who can’t pay for them. You don’t have to worry about being unemployed and homeless and dying of some treatable thing in an alley somewhere.
You don’t have to hope you’ll get lucky – hope that some friends will take you in, and an employer will show you mercy.
All you have to do is be a human being. And you’ll be treated like a human being.
I don’t wish my experience on anyone. It’s my fervent hope that nobody in the U.S., ever, has to live with the fear and terror I did during that year from 2006-2007 when my whole world imploded. I want people to forget what it’s like to live that way. I want them to think that this is the kind of story you’d only hear about in some shitty SF dystopia novel.
I don’t want it to be a story that anybody in the country ever has to live again.
So go get yourself some health insurance.