As I mentioned in at least one other post, when I was 25 years old, I worked for a phone sex line. While I don’t regret working there, it was actually a very dark period in my life and I don’t look too fondly on the memories. I never sought out to get a job like that; I only applied for it and accepted it in a moment of desperation. I’d been looking for a job (any job) for about six months, I was living in a mold-ridden apartment with a friend, I was denied unemployment, and I was mostly living on credit cards. One day, another job-hunting friend approached me and asked “Would you ever consider working at an adult phone line?” “Sure,” I said. And that was that.
It was at that job that I began to realize that I don’t work well with the public, especially when the public is going to be both demanding and unpredictable. The job paid only commission, so I had to actively solicit men to get them to call me. I wasn’t very good at that. There was no hourly base pay, and there were no benefits. When I worked there in addition to one or two part-time jobs, I made enough money to get by, but there were long periods where my only job was at the phone sex line. During one of those long periods, I became very ill.
I don’t know what I had. It may have been strep throat; it may have just been something similar. I was in a lot of pain, I had virtually no money, and (of course) no health insurance. Despite my illness, I kept trying to go to work. I didn’t know what else to do. Day after day I showed up, and day after day the manager sent me home. There are few things less sexy than the sound of a woman’s voice when she is stricken with a sore throat, laryngitis, and phlegmy coughs. The manager would hear me answer the phone and would send me home almost immediately.
Three weeks of misery went by, and I had barely worked. That meant that I had barely been getting paid. Phone sex operators do not get paid sick days, vacation days, or personal days. If I wanted to pay rent and bills like a responsible adult, something had to change. My manager gave me some information about a free medical clinic in town, so I went.
It was winter, so it was cold and rainy in western Washington. The clinic attendants made us queue up outside and would not let us in until they were ready to see the first appointment. I had lost my voice, but that didn’t stop me from speaking to a few people in the line. Most of them had illnesses like I did, and many of them were regulars.
It was a very confusing experience. I waited, waited, and waited, and then I was able to sign in. I waited, waited, and waited some more, and then my name was called. They asked me a few questions about what I needed, and then they sent me back out to the waiting room to wait all over again. About two hours after my arrival, I got in to see the doctor.
The clinic room looked like any other clinic room. The doctor was a man in his late 40s. He asked me to sit on the examination table.
I had terrible laryngitis, a cough, and my throat was swollen and sore. The doctor looked in my mouth and said “Hmm. I don’t see anything wrong.”
I protested immediately –as best as I could with almost no voice. I told him that I could see that my throat was swollen just by opening my mouth and glancing in the mirror. He had peered into my mouth with a flashlight and a tongue depressor and then had the audacity to tell me that he didn’t see anything wrong.
He looked again. “I still don’t see anything wrong.” At that point I was furious. I was exhausted, sick, cranky, in pain, and I’d been there for hours just to have this guy tell me I was just fine when anyone could see that I wasn’t. I continued to protest –if my voice had been strong enough, I’d have been yelling. He said “I can’t get your tongue to go down at the back, so I can’t even see your throat.”
I told him “Yes, that happens every time I get sick. It gets sore and swells up back there.”
“So…what, your tongue hurts?”
I was just stunned. Was this guy a real doctor?
“No, I have a sore throat! I’ve had this exact problem many, many times in my life!”
“What has helped you get better before?” he asked.
“Okay, then. Let’s get you some antibiotics.”
This is the treatment poor people get. The best part of the whole experience was the “toiletry pack” they offered me on the way out. They gave me a Ziploc bag containing soap, a trial-size tube of toothpaste, a toothbrush, some dental floss, some Q-tips, and a small assortment of feminine hygiene products.
Despite the generous toiletry pack and the free antibiotics, I have since avoided free clinics. In 2008, I came down with a respiratory infection that turned into walking pneumonia, and I just waited it out for a couple of months. When I started grad school, I signed up for the student insurance, but after paying over $150 a month on the premium, I still got billed over $4000 for a battery of tests I had during a freakish lupus-like episode.
My $4000 medical bill caused me a lot of problems in grad school. Because I had the tests done at my university’s hospital, they had the power to prevent me from enrolling if I couldn’t pay my bill. I was living on student loans, and very meager ones at that, so it just wasn’t possible for me to pay much towards these bills. They also seemed to have difficulty figuring out what my insurance would or wouldn’t pay for. To this day, I have no idea what I really owe.
I grew up with two chronically ill parents, and I have spent most of my life around illness. My mother was diagnosed with type 1 diabetes when I was about seven years old. She had gestational diabetes when she was pregnant with me, and two out of three women who get gestational diabetes end up with diabetes later. Type 1 diabetes is usually associated with children, but occasionally it shows up in adults, too. My mother was overweight when she was young, but she was a pretty normal 135 lbs at the time of her diagnosis. Strangely, she always hated sweet foods and never ate them.
Within about two years of her diagnosis, she had to stop driving because her vision had gotten so bad with retinopathy. At times it was like living with Mister Magoo; she once made me a peanut butter and spaghetti sauce sandwich because the spaghetti sauce was in a similar jar to the jelly. Another time she made me a pizza with green cheese because she hadn’t noticed that the mozzarella had gone bad.
Four years after her diagnosis, her kidneys failed and she was put on dialysis. I was 12 years old at the time, so this meant I had a lot more responsibility around the house. My father was diagnosed with prostate cancer the same year. My parents continued to act as though everything was normal, so it took me a long time to realize that I had a lot to contend with at age 12.
Dialysis was brutal. So were my father’s surgeries and radiation treatments. Despite living in the same home, I barely saw or spoke to my mother for three days of each week. She had dialysis very early in the morning on Mondays, Wednesdays, and Fridays. Sunday was her only really “good” day because it was the longest she went without being hooked up to that horrible machine that took her blood away. She would leave for dialysis before I woke up, and come home shortly before noon. During the school year, I’d come home and she would be asleep, or at best dizzy, nauseated, and grumpy. Either way, she was hardly an attentive parent, but I hold no resentment towards her for that. During the summers, I would sometimes go with her to the dialysis center. She shared a television with a 17-year-old boy and they would watch cartoons or The Price Is Right together while on their machines.
It was difficult for my mother to travel because of dialysis. We had to make arrangements in advance every time she went out of town for a few days. During the summer of 1994, we went on a short trip to Australia. Arranging dialysis in another location was always difficult, and those difficulties multiplied while we arranged dialysis on another continent, especially prior to the age of e-mail. We were also planning to stay in one city for one week, and another city the following week, so we had to make accommodations for each one. There were a few screw-ups with her first reservation, but eventually we got her in at a nice unit near the hotel. The differences between the Australian dialysis center and the American one were astounding.
At the American center, food was not allowed on the premises. When my mother left each day, her blood sugar and blood pressure were dangerously low, which is to be expected when you’ve had your blood scrubbed clean. Not being allowed to eat until she left the building exacerbated her lightheadedness. She could not drive herself (both because of the weakness and the retinopathy) so we hired a “public chauffeur” who drove her straight home. She would come home, make herself some salty instant soup, then sleep the rest of the day.
In Australia, not only did the dialysis nurses allow food on the premises, but they served tea, crumpets, and fruit to all the patients. The equipment was visibly newer and cleaner, the staff were kind and they interacted with each patient. Best of all, my mother wasn’t a weak mess when she left each session. I spent a lot of time by myself in Australia, but I spent a lot of time with my mother as well. We did a lot of shopping together and we enjoyed many coffees and conversation at Myer, an Australian department store. She felt well and was up to far more activity than usual, and I will always remember those two weeks because I felt like I had gotten my mother back.
I was young and did not handle the finances. I have no idea how much it costs to be on dialysis. I do know, however, that once my mother got a kidney transplant, her immunosuppressant drugs cost in the neighborhood of $1000 a month, and that was over ten years ago. That was including insurance coverage, which had premiums of several hundred dollars a month, just for her. She had a pre-existing condition, so her insurance plan left much to be desired. My parents were wealthy. They could pay this. Most people wouldn’t have been able to. Although my mother did not live to average life expectancy, I can’t imagine how early she would have died had we not been able to pay for her treatment to the extent that we could. If I have the same fate as my mother, I will probably not be so lucky –and she wasn’t lucky at all.
Partly because of my mother’s condition, I have done a fair amount of volunteer work with the local branch of the National Kidney Foundation. I have a lot of sympathy for people who struggle with diabetes and kidney disease. For two years, I drove dialysis patients to and from their appointments. One of the patients I drove was a 25-year-old man. He had been diagnosed with type 1 diabetes when he was a young child. One day, there was a complication, and he went into a coma. He woke up blind and with no kidneys.
He was no longer able to work. He had a young daughter, and was supporting her with his disability checks and miscellaneous government support. He lived in a terrible neighborhood. This kind of thing can happen to anyone, and it frequently leads to poverty and bankruptcy.
I listen to a lot of political talk radio. I was quite surprised the other day to hear a clip of President John F. Kennedy discussing healthcare back in 1962. I have long believed that the United States falls far behind every other industrialized country in the world, but I didn’t realize that others had felt that way for so long. President Kennedy had a vision for the way things should be in this country, and we’re still so far from getting there.
One of the main arguments I have heard against healthcare reform is that the government will cut us off and not give us the care we need. It appears that insurance companies are doing that now. My mother died in 2003 after a very long series of illnesses. One illness led to another, and they all fed off of each other. She broke her hip, got bedsores, and was left with blood poisoning and brain damage. She spent most of the last two years of her life in a hospital. They discharged her prematurely several times (for insurance reasons), only to have her brought back in an ambulance within 48 hours. The last time she was discharged, they weren’t able to get the ambulance fast enough.
My parents worked very hard and made a lot of money. The problem is that lots of people work very hard, but not very many people make a lot of money. I am completely content with paying higher taxes if I have the security of knowing that I won’t be expected to pay $100,000 medical bill because my insurance company dropped me when I finally got a diagnosis for my mystery illness. Of course that’s easy for me to say now because I am unemployed, but my mindset did not change when I was better off. As a person born into a family with many illnesses, I have a lot of things to worry about. I had surgery in 2006 to extract a large (benign) tumor, and the surgery would have cost me over $30,000 if I hadn’t had insurance. As it was, I only had to pay $3,000, but the whole thing could have been prevented if I had the privilege of regular, affordable healthcare at the early stages of my illness. I do not have insurance right now, and I don’t know if I’ll ever have a worthwhile insurance plan again. Preventative care is the key, and our current system does not encourage it and in some cases does not allow it. I’m willing to bet that most Americans do not know the true cost of healthcare. The security of access to the care we need far outweighs the potential cost. President Obama had better not back down.