By the time I went out looking for a new teacher I no longer had any idea what I was doing. It was the dead of winter, my mind wasn’t functioning properly; I was a wreck. I didn’t remember what I wanted to study; I didn’t remember why I wanted to study at all. There no longer seemed to be any point. The one who couldn’t teach me anymore had said: You can always divorce your spouse, but your true teacher will be with you for the rest of your life. I was concerned. I flew back and forth. I muddled through various interviews with various teachers, some of whom were very famous, some of whom were very wise, some of whom were neither. Things were said, I was sometimes impressed, sometimes intimidated, sometimes bewildered. But in the end, after everything had gotten mixed up, the one thing that stood out to me, in my confusion and terror, was that one of them, and only one, had said to me, very simply: If you come here, I will take good care of you. In the end, that one line was the deciding factor. He had said the thing I most needed to hear at the time I most needed to hear it, and he probably did not even realize this. But in retrospect I realize that I made the right choice, even though I did not know at the time all the reasons why it was the right choice. Perhaps, actually, because I didn’t know. If I had been less confused, more rational, more confident, more optimistic, if I had tried to weigh all the factors and come to the logical conclusion, I probably would have miscalculated and made a serious mistake.

Affliction can be a blessing. The older I get, the more I see that, more often than not, it is.

* * *

I dreamt my teacher and I were out of the beach, running around in the sand, trying to collect data about the waves. The waves always receded before we got all the information we needed. The task was clearly impossible. We could never fully understand the ocean this way. There was so much time pressure, on every cycle of flow and ebb, and yet we weren’t panicked. What mattered was not that we solve the problem. What mattered was that we were out there, looking, making the necessary observations, together. And it made me so happy to know, that of all the people in the universe, we were the ones out there. I was shocked by this, actually, that we were out there alone, and amazed that he was willing to take on the whole ocean with only me.

Palm Sunday, 2010.

He says he needs me to go ahead and do it — to reclaim myself. He says it is important for the world. I dream that he’s telling me the secret, he’s telling me how to do it, but I cannot remember when I wake up. I know I already know. I am so stubborn. The story of misery remains so attractive. Today I am carrying palm fronds in the rain, afraid to show my face in my own church. The priests wear martyr’s red, and I will not even submit to be seen by unstrange eyes, afraid of the questions that may be asked.

The same notebook, next page, a year later:

I have had nothing to say for a length of time now.

I find myself trapped in spaces that I can no longer see because I have spent so much time in them that the objects have erased themselves. They have been erased from every angle, they have not been rearranged in so long. I do not touch them, not even with my eyes.

I cannot leave my cell because the lady will see me go and she will know that I was here and she will ask where I am going and I won’t be able to explain why I am going now and why I did not go before.

These objects used to have meaning to me, they used to remind me who I was. I think if I could still see them, they might tell me again.

I have stopped trying to remember. The one thing I remember about the secret is that it cannot be remembered — you have to rediscover it for the first time.

They say sadness does something to your memory, it goes in and cuts out all the joyous bits and sews all the dark bits together so well that even the seams don’t show. Would you believe I have been so happy I’ve frightened people away?

My father says when he was seized by joy the whole world looked different, the colors more vivid, a walk through the woods became an incredible sensory experience.

The things they tell me to do are so simple: turn on this light, look into it. Cut out a white square, tape it to the wall, try to see it without distortions: just a square. See the distortions.

Right now the only thing I can remember from my entire childhood is the sting in my palm from running it backwards up a sprig of baby’s breath. A handful of petals. I threw them into the air, they landed in my hair like snowflakes, like a wedding, did it over and over again, I never ran out of flowers, my hand was pink and raw but never bled. That, and the grasshoppers we had, the ones that were the size of your hand. Everything in relation to hands, to the body. But haven’t I told these stories before and isn’t that what it is I’m remembering?

Did you know I have not cooked a meal in 9 months, that I haven’t made love in nearly two years. It is so strange how much I used to want everyone to know everything about me, but at the same time I’ve always been so secretive, I’ve always been afraid, I’ve always been hiding, afraid of being seen, afraid of the questions that will be asked.

If I hadn’t had so many choices, would I have been better off? With a 9-yr-old, a 6-yr-old, can you imagine? The other thing I remember is standing in front of my mother and grandmother in a room in the Holiday Inn, they were smoking their cigarettes and drinking their coffee and wear their beige and white colors and I must’ve been one of those ages myself, my performance was standing before them listing everything that was wrong with me until I cried. One eye is bigger than the other. I do not love anyone as much as I want to be loved. One thing after another until I was sobbing, and they would ask what else, and they could not help but burst out laughing. The told me they loved me as they laughed at me. Remembering this, my mother said I was one of the only people in the world who could break her heart and crack her up at the same time, and isn’t that what life is all about, isn’t that the secret to everything?

It really seems that all art now is about time, about the future.

Like a good liberal, I’ve always been strongly in favor of healthcare reform. I was uninsured for three years, from 2001 until 2004. I was 18-21 years old and healthy. I didn’t see a doctor or a dentist for that entire period. In 2003, I dated someone who worked at the Department of Health and Human Services in Washington, DC, an under-undersecretary who dealt with statistics on the uninsured. Many, many of my friends are either now or have been part of those statistics in the past. One girlfriend of mine had a major health scare while uninsured, and had to stay in the hospital for two days and have many tests. She got a five-figure bill she had no means to pay, and worried about what to do for months afterward (eventually it was covered by Medicaid).

While I was in Easton with my parents, after my mom broke her ankle, I got to see all the astronomical bills associated with her surgery and hospitalization and physical therapy. Thankfully my parents have good insurance through my stepfather’s employer, GE, but it was still a huge headache to deal with all the bills, the calls to the insurance company, etc, and with such incredibly high costs for healthcare, even the relatively small percentage not covered by insurance represented a significant financial burden for them.

As a student and full-time employee of NYU from 2004-2009, I got excellent medical benefits, as well as access to NYU’s Student Health Center, and special deals at NYU Dental, NYU Med, etc. I went to the dentist regularly, had my wisdom teeth extracted, got regular check-ups every year at Women’s Health, STD testing, flu shots, used NYU’s counseling service a couple times when I was really down, etc. I paid very little or nothing for these services. Whatever monthly premium I paid for my medical and dental insurance was automatically deducted from my paycheck, and I don’t even remember how much it was. It wasn’t much. I never had to go through a big hassle to enroll in the program; it just happened.

So before 2009, I had been both uninsured and well-insured, but, I didn’t really start to understand what’s so broken about the healthcare system in this country until I left my full-time job and cushy benefits, had to deal with COBRA ($600 a month!), and then with finding an independent insurance provider. If you don’t know, getting independent health insurance requires filling out a mountain of paperwork. You’re expected to tell them every single event in your medical history for the past 10 years. Seriously. I was 26 when I applied, healthy, had hardly any medical history to speak of, and STILL got rejected from the first place I applied. Then, once you’re actually gotten approved, you get to live with the reality that it’s not just “the uninsured” verses “the lucky ones with good benefits.” There’s a third, huge category of people who are “crappily-insured.” This category seems to comprise pretty much everyone who is insured but isn’t well-off and whose employer isn’t paying for their insurance; including, now, me. When you’re crappily insured, you know you won’t go bankrupt if you get hit by a car, but you’re not really sure it’s a good idea to go to the doctor if you’re not really that sick.

Being crappily-insured, while it is overly expensive and definitely not as nice as being one of the lucky ones, still isn’t really all that bad… until you actually get sick or hurt. This had never happened to me. Apart from my winter blues, the only health problems I’ve ever had were on the order of the flu, a rash, seasonal allergies. I’d never broken a bone until Burning Man ’09, when I broke my toe by tripping and face-planting in the playa while running toward some distant, shiny lights in a state of, um, altered consciousness. But it was just a toe, and they have a 24-hour medical staff at Burning Man (thank goodness), and no one at Medic Camp asked to see my insurance card. Then last month I went to the ER for the first time, after I fell and skinned my knee pretty badly. It turned out I was okay, the wound wasn’t infected. The staff took down all my insurance information without any fuss, and a few weeks later I got a bill that seemed excessive but not completely ridiculous, considering it was the emergency room after all.

And then. Last Friday, I started coughing. I figured it was allergies. I was having some other typical allergy symptoms. I don’t usually cough with seasonal allergies much, but I figured maybe it was just a really bad reaction. But then I took Claritin, which is usually miraculous for my allergies, and it did nothing, and the cough kept going for days. I was tired and spent the whole weekend mostly in bed. Yesterday I was STILL coughing, this really loud barky cough that sounded like something in between TB and lung cancer, and I tried DayQuil and various things that didn’t help before I finally, with some insistence from Mitsu, decided I had to go to a doctor. But what doctor? I couldn’t go to the NYU Student Health Center anymore because I’m not a student. I didn’t want to go to the emergency room for a cough. I had this crappy insurance, and, even worse, it was crappy out-of-state insurance I got in Portland that’s going to expire at the end of the month. But Mitsu did some googling and found some community clinics and I just picked the one that was closest to me and went. It all went downhill from there.

First they said they didn’t take my insurance, then I asked if there was anywhere else nearby that might take it, and they said, Call your insurance company, and I said, My insurance company’s in Oregon, and they said, Try the hospital, and then I said, Well, what if I just paid for the visit out-of-pocket?, and they said, That’d be $200, because you have insurance ($200 is the top of their sliding scale, which went down to $40), and then they asked if my insurance company would reimburse me later for an out-of-state expense and I had no idea so they told me I had to call my insurance company and ask, which I finally did.

Although I was originally somewhat dubious about going to a doctor for a cough, you have to keep in mind that throughout this entire conversation I was coughing profusely. It was clear that I wasn’t there for a check-up; I was there because I was sick, right then.

So I sat down and called my insurance company, in Portland, and of course to speak to a live person I had to tell all my subscriber and group numbers and everything from the card to some voice-recognition software, which took me several tries because at that point I had been coughing for four days and my throat and voice were wrecked. I finally got in touch with a live person and asked the question the clinic wanted me to ask. The insurance rep had all these other questions about whether the clinic was partnered with such and such network. Of course I didn’t know. I couldn’t ask the people at the desk because now they were busy with other patients. So she told me I’d have to find out and call her back.

Skip forward about half an hour and the clinic had finally determined that they COULD accept my insurance afterall, but, after another round of mysterious communication with my insurance company, they determined that my policy was terminated in September of 2009. I knew (and later confirmed with the insurance company), that that was simply false, but at that point I was tired of waiting and said, Fine, if it’s terminated, does that mean I don’t have to pay the $200? Then they wanted to know how much money I made and determined that, no, I didn’t have to pay $200, I just had to pay $160. Which sounded like a ton, but I was coughing my head off and just wanted to see a doctor already, so I said fine, and I paid the $160. The receptionist said I could have the 2:45 appointment that had just opened up. I had originally come in at a little past 1. It was 2:15.

I finally got to see the doctor at 4:30. I was terrified that, after all the trouble, she was just going to tell me I was fine and to take some cough drops, but, that’s not what happened. She made a point of mentioning how many people come in to see her complaining about a cough and then hardly even cough once during the appointment. She got to listen to me cough many times, asked me a lot of questions about my (lack of) other symptoms, listened to my lung sounds, and said that yeah, though it wasn’t quite wheezing, it really didn’t sound right, and that though she rarely prescribed antibiotics for things like this, that in my case it was clearly warranted, and that if I started running a high fever I should definitely go to the ER. So basically, I have bronchitis, possibly pneumonia. Which is the sickest I’ve ever been, since I was baby.

It would be great if that was all there was to it. I had some insurance hang-ups, had to wait a long time to see a doctor, but then once I finally did she was nice and helpful. But no. Then, the doctor sent my antibiotic prescription to a pharmacy near my place in Brooklyn electronically. I showed up there a couple hours later and the prescription was nowhere to be found. I called the clinic, and they were then closed, and the person who answered the phone after-hours couldn’t do anything about it. I’d just have to wait until tomorrow.

In the midst of yet another another night of intense coughing and little sleep, I did some research on pneumonia. Do you know what happened to people who got pneumonia back before there were antibiotics? A third of them died. 5% of people who get it today still die.

The next morning, it took me five calls to the clinic, pharmacy, and insurance company before I finally just gave up and paid for the medicine out of pocket. Hopefully I’ll get it all straightened out eventually, but in the meantime, I’d like to concentrate on getting well and writing long rants about healthcare on the Internet.

Obviously, on the scale of sickness, I’m not really that bad off. But just going through this whole thing has made it so much more clear to me how serious the healthcare problem in the USA really is. People are dying because of this, and it’s not hard to see why.

Yes, when I finally got to see a doctor, she was concerned, sympathetic, and helpful. I happened to see another doctor that night, a friend of my landlady who was visiting, and, seeing that I was sick, she wanted to hear all about it. She concurred that it is quite possible to have pneumonia without having other symptoms and that my cough sounded bad and that I should be really careful.

It’s not that there’s a problem with doctors and nurses… it’s everything else. It’s all the insurance-related red tape I had to go through just to see a doctor, just to get the drugs I was prescribed. It’s all the people I spoke to about that who seemed to have no recognition at all that when people are SICK they can’t just wait for all this mess to get sorted out, and that it is very difficult to explain the entire situation to your insurance company over the phone when you can hardly talk. It makes me understand why so many poor people go to the emergency room for primary care, which seems so inefficient. It’s because, in a hospital, even if you have to wait, you at least know you’re going to get treated.

When I thought about why healthcare needed to be fixed, I usually thought about my young, healthy friends who are uninsured and can’t go get their teeth cleaned. Yes, that really sucks, but it’s not the main reason why healthcare needs to be fixed. It needs to be fixed because of the people who are actually sick. The only way I managed to get over some of the hurdles the system put in my way was just to pay for the services I needed out of pocket. What about the people for whom that isn’t an option? What about all the people who actually CAN’T get jobs because if they did, they’d lose their low-income healthcare benefits, and without them, they’d die? What about the people who really are too sick to call their insurance providers? What if they don’t have family to do it for them?

I can’t even imagine how much the frustrations I’ve experienced over the last few days would be multiplied in the case of a much more serious illness. This is utterly ridiculous. We’ve got to fix this.

What else is possible? Read my friend Veronica’s post about her experience with the “public option” in Germany.