When you enter the country of Pain, they confiscate your passport. You leave behind the things and people that used to feel important and familiar, in which you used to believe. Everyone in the new country is a stranger, though it scarcely matters because pain is really a nation of islands, and everyone who lives there lives alone.
In 1995, while my husband and I were visiting my best friend Tom in Barcelona, I became an unintentional and surprise immigrant in the country of pain. It happened overnight, and at first I did not realize I had “moved.” I believed I had a bladder infection. I’d had them before—many, in fact, even having been hospitalized for one as a child. Sometimes when I got one, I could not close my legs for the burning; I could not stop pacing the room; I urinated blood. But the agony was always temporary. You take your antibiotics, you take your pills that make your pee turn orange, you feel a little crazy for a couple of days and then it is done.
Except this time, it was not.
I tried to make the most out of the remainder of my trip—which then extended into London—but it was difficult. I was impatient for my stay on the island of pain to end. Surely once I got home to Chicago and could see my own doctor, I would get on the “right” drugs and I’d be fine in twenty-four hours. So we returned home, and my doctor, who knew I was prone to these infections, prescribed a stronger antibiotic over the telephone without making me come into the office. I began taking it gratefully.
I got worse.
What had been distracting and bothersome became blinding, all-consuming. My burning no longer happened only during or right after urination but was happening twenty-four hours a day. Eating seemed to make it worse. It grew difficult to function. I was exhausted from the pain, not sleeping, and had started peeing maybe 20 times a day at least. My bladder felt full constantly, as though with battery acid. The inflammation was so extreme I could feel it right through my skin, radiating heat and distended so that my lower stomach felt unnaturally tight and hot. Nothing alleviated it. I showed up at my doctor’s office and he ran a urine culture saying maybe the infection had spread to my kidneys. But this had not happened.
There WAS no infection. My urine was clean.
I went to my mother’s ostiopath. He gave me herbal supplements but they didn’t help. Like many inhabitants of Pain, I became desperate, without the usual sense of decorum and subtlety that people on the Mainland possess. I called my ostiopath too often and complained too stridently. I began to worry that maybe I was dying. I sounded, in short, like a crazy hypochondriac, since crazy hypochondriacs are sometimes indiscernible from people with real ailments the medical establishment does not understand. In truth, I could not be sure myself that I was not going Crazy, which is its own island adjacent to Pain. Maybe it was all in my head. It began to seem possible that one moment, a woman could be in Barcelona lying on topless beaches, seeing a Sheryl Crowe concert, smoking lots of hash with Spanish and Dutch friends, visiting Gaudi parks and having those delicious, vacation-specific afternoon long sex sessions with one’s husband . . . and that the next day she could be raving mad, driven to distraction and a mounting dread of life by physical agony that might not even be Real.
What was real? When you are in pain, it’s hard to tell. It’s in your head, they may tell you, and how can you prove it isn’t? Come in here, you want to say back—Come in here and let’s see how you like it; let’s see how well you cope. But you cannot peel back your skin and let others step in and poke around with their own pain receptors. Your sensations, your respective sanity or madness, are all inaccessible to them.
Maybe you don’t live on an island of Pain so much as become the island. Though, of course, metaphors fail. If you were an island, you would be one nobody wanted to visit. You would be prone to torrential storms that prohibited settlers from approaching your shores.
If you are not an island but a woman, you begin to wonder whether you can honestly go on living this way. You are 27 years old. You could conceivably live another 60 years. The thought of 60 more years, each stretched into its long days, its long hours, feels so unbearable, so overwhelming, that even if you have always been afraid of death you begin to think maybe it would be the “best thing.”Death begins to sound like a dangerous lover from whom you cannot stay away. Death begins to sound like the bad boy you know will be the end of you, but whom will get you out of your parents’ oppressive house, and so you cannot help but run off with him into the night at 17, when no one is looking, when it was not even something you had planned.
I began to take narcotic painkillers. A lot of narcotic painkillers. An addiction to Vicodin probably saved my life.
I alternated at first. Darvoset, large doses of Tylenol 3, which was weaker than the others but gave me a scraping feeling inside my stomach that I liked, that distracted me. Vicodin, or its stronger sister Norco. Percocet when I could get my hands on it. I drank very little alcohol because the fermented nature of it aggravated my bladder further, but I smoked copious amounts of pot.Sometimes I threw some Benadryl in for the hell of it, because though it did nothing to kill my pain, mixing it with the painkillers and weed made me more high so I didn’t care as much, yet didn’t increase my tolerance to the pills. I alternated so that I didn’t become immune to their affects, but sometimes I became immune anyway. Sometimes I took Vicodin after Vicodin at a party, hoping to numb myself out enough that I could smile and make small talk with people—so that I didn’t have to go home and cut myself with the unscrewed razor from my eyeliner sharpener, kept inside a felt cloth for that purpose now, and yet even when my ubiquitous silver pill case was empty the pain was still clawing inside my bladder like an animal determined to scrape its way through my skin and expose itself to the world.
Somewhere amid all this, in early 1996, I received a diagnosis. Interstitial Cystitis: an ulcerative, autoimmune condition of the bladder. It was said to be incurable but not necessarily progressive, and not actually “harmful” (if you don’t count being in blinding pain 24-7 to the point that you have to become a pill junkie “harmful”) to one’s long term health. It is no doubt indicative of my state of mind that this diagnosis actually seemed like good news. I was not insane. There were books about this illness; there were doctors who recognized it, though they did not actually know how to effectively treat it.
It probably goes without saying that, both before and after my diagnosis, sex was not a great deal of fun. And yet, I was determined not to relinquish it. To relinquish sex would be like making a space for Death on the couch. It would be saying goodbye to anything that made me a normal woman, a normal twentysomething person still in the prime of life—to what made me still me. I began to require extreme sensations, extreme scenarios, to transport me far enough away that the sex seemed pleasurable rather than torturous. Probably it makes little sense to say that, while I had always had an interest in kink, those were the years I most required it in vigorous and intense proportions. I just wrote a bit about that, but now I have deleted it; even after a decade, it doesn’t feel like something I can delve into here. Suffice it to say that my husband was, at turns, befuddled, turned on, beleaguered, elated, exhausted. While I was busy popping pills, brewing Chinese herbs, seeing ostiopaths and chiropractors, attending a support group for people with IC (though it depressed me so deeply I never went back after meeting women who had had their bladders removed and lived on psychiatric medication), and becoming an incomprehensible fetishist, he had to continue doing all the “normal” things our lives required, like going to work, paying the mortgage. He worked long hours in finance and his firm was riddled with political unrest and in-house dramas. At times he seemed to me an infantile narcissist, pettily concerned with banalities that could not compare to my Life and Death situation. At other times he seemed a saint to put up with me—to still want to touch me, much less live with me—and I felt so grateful to have him I became as clingy as a child.
There were other things. Other factors. My husband’s issues as an adult child of an alcoholic were beginning to surface in the face of our stressful situation. There was a man with whom I began spending a great deal of time, who it would be fair to say was drawn to all the darker aspects of my personality, my life, while my husband wanted me “back” to the way I’d been before—wanted me healthy, which felt increasingly not even like a pipe dream but a bad joke. Our marriage began to drift.
This was my life. 1997 came; 1998. There was no country of Healthy anymore. Other people lived there, but I could not even visit. The people in Healthy had strange concerns. They cried endlessly over brief love affairs gone wrong, or said “I wish I’d never been born” because they were having a hard time conceiving babies, or talked about their work problems as though these things carried the weight of a mass genocide. A close friend who was unhappily single once told me that I “had no problems” because I was married and my husband made good money. She knew of my illness, but she herself was so ceaselessly healthy that to her it must have seemed abstract, somehow lesser than the difficulties of living alone in an apartment, sleeping alone in a wide bed at night. My friends’ language made no sense to me. Increasingly, I needed a translator to be among them. I was more comfortable among junkies, bipolars, survivors of cancer, who were, at the end of the day, always biding time, waiting for the next blow.
Yet I never really spoke of my illness. I followed a strange diet; I brewed tea with odd herbs; I took a lot of pills. Sometimes I cited the name of my disease as explanation for these habits, but I rarely elaborated. One thing everyone who lives in the country of Pain knows is that if you open up to somebody once about something that is fundamentally unchanging, constant, permanent, your “confidante” will begin to ask you about it frequently expecting some kind of progress report. They’ll say “How are you feeling today?” every time they see you, and if you keep saying, “Like slicing my arms open just to distract myself for one goddamn moment from the burning between my legs” they will not like this answer after hearing it for the 97th time. You will have officially become a buzz kill.Better to just say “Fine.” Better to just say nothing.
My years in the country of Pain are an episode of my life that is both integrated and self-contained.Now, in retrospect, the days, months, years blend together. All said and done, this period of my life lasted for three years and three months: from May 1995 to August 1998. At the time of its finale, I was living in Amsterdam with my husband. In the paradox that is life, my time in Amsterdam was both one of the best times of my life and also one of the most intensely unhealthy. Away from my doctors, my pain level escalated even beyond its usual state. There were days when all I could do was slam Famous Grouse scotch and smoke hash and pound Vicodin until I was incoherent, and still I could feel the edges of the pain snaking around me like a vice, strangling me. And yet, there were days at outdoor cafes and buying fresh vegetables at the markets near our apartment in the Jordaan; there were friends visiting and there was Paris and there was Brussels and there was London and there was Lausanne and there was still, strangely, an intoxicating infusion of sex and a falling-in-love-again with my husband amidst it all. There was a fear of flying that felt crippling and a continued flirtation with death. And then, abruptly, there was a visit to a health food store where I randomly described my symptoms to a Dutch employee of the store and she suggested the herb Pau D’Arco in larger doses than recommended on the bottle, and I tried it because I would try anything, with no hope or optimism that it would actually work when nothing else had, and within two weeks of popping 9-12 Pau D’Arco tablets daily, I was 100% pain free, off every other treatment from my Chinese herbs to my painkillers. I was, incredibly, a normal person again. Shell-shocked, perhaps, but incredibly—for the first time in more than 3 years—pain free.
One thing you tell yourself when you leave the Island of Pain is that you will never be one of those assholes again who sweats the small stuff. That you have learned what is Really Important, and that interpersonal dramas and posturing will no longer plague you—that you will be Grateful and Content with whatever life hands you so long as you remain healthy and pain–free. There are stories we tell ourselves. There are lessons we think we have learned. One is that Pain somehow elevates you from the rest of humanity, makes you more pure, makes you more wise. Maybe part of this is true. And in another, more-than-equal part, it is all bullshit. We all revert to a state of narcissism, which is, perhaps, the human condition. Before you know it, you are fighting with your spouse about the same crap everyone else fights about; before you know it, you are losing sleep over some ridiculous drama at work. It is true what they say about pain: the body cannot retain its memory of that primal state. The intensity is simply too much to cope with on any long term basis. At the end of the day, we all revert to a state of Normalcy if we can. Gratitude on a 24-7 basis holds out only so long.
It has been eleven years now since I left Pain behind and moved back to my native land. I have almost forgotten, now, what it was like to be a foreigner; what it was like to have lost my native tongue. For two years, I took Pau D’Arco daily out of fear, but eventually I stopped, just as I abandoned my Vicodin habit, my marital tumult, my cutting alone in my bathroom, my desire to end my life. Three years after my pain ended, I adopted two children, and five years later I had another, with a body I once believed incapable of even getting through a normal day much less bringing new life into the world intact. These days, I am just a Normal Woman, just a Normal Mom. A decade has worn down the memory of those days as an immigrant in Pain’s land. I tell myself, as all immigrants do, that now I am home for good: that I will never return to that land.
They told me that IC was “incurable” but that it could go into remission. I am, now, 41 years old. I have been in this remission for 11 years. Maybe, at any time, it could end, and there I would be, again. Back then, it was all I could do to get out of bed, to go to graduate school, to feed myself and speak to people and get through my day. Now, I have three children and run my own business and teach at two universities and run an online literary magazine and live with and financially support my elderly parents. If I were blindsided again that way, the consequences would not be the same. My stakes are higher. This time, I might not survive intact.
And so I wait. Or rather, I usually forget I am waiting. I relish the arrogance of forgetfulness, of normalcy. I am here, in my body, my normal body, right now. That other truth seems murky and impossible again. This is the arrogance of the human experience. Even though I have already touched that flame, it seems impossible, somehow, that such a thing could happen to ME.