I'll Cover You - NYTimes.com My girlfriend pressed her balled up sweatshirt against her mouth and squeezed her eyes shut, tears striping her temples. She lay on her back on the floor of our living room, feet tucked under the coffee table, head on a sheet-covered pillow, left arm outstretched. I knelt over her, the heat of my breath filling the yellow surgical mask, hands slick under sterile gloves. I delicately peeled up the corner of her bandage, the skin beneath it smooth and pale as onionskin. With every tug, I saw her chest heave. Gritting my teeth, I pried the plastic dressing from the tiny tube that led into her upper arm. It was mid-June, and the dressing had melted onto it. She kept her arm still, but I heard her moan through the sweatshirt. Heart thudding, and tears pricking my own eyes, I kept going, despite the refrain in my mind: I can't do this, I can't do this, I can't do this. It is a terrible thing, to hurt the person you love most. As a former professional dominatrix, I have willfully hurt a lot of people (albeit in my more callous early 20s). Sometimes, while torturing my clients, a little voice whispered, Do you like this? What does that mean? I needn't have worried about my nascent sadistic streak; I can now say with complete assurance that I have no desire to hurt anyone who does not enjoy it. Now I'm a writer - I still trade in fantasies. But I could never have imagined this: accompanying someone I love through the labyrinthine annals of treatment for a disease that the medical establishment doesn't yet understand. I never imagined asking for so much help. And I certainly never imagined having to pull a melted bandage off a tube that entered in a small hole in my lover's arm and led straight to her heart. But there I was. And I could do it, because I had to. One night in February 2011, my girlfriend called me from Beth Israel Hospital in Manhattan. After months of increasingly debilitating symptoms, Sini's doctor had sent her to the emergency room because of an irregular heartbeat, in addition to air hunger, extreme pain in her joints, a migraine headache and severe exhaustion. For years, her doctor had been treating these symptoms individually. She had an inhaler, arthritis medication, headache medication and allergy pills - all with imperceptible effects. And since she had quit her day job to work full time on a documentary she was directing, she'd been paying out of pocket. I had insurance through my job as an adjunct professor at Sarah Lawrence College and Purchase College, and we had recently become eligible for domestic partner benefits. We were just waiting for her coverage to kick in before seeking further help for her mystery illness. But Sini couldn't breathe, so we couldn't wait. I lugged my wheeling briefcase off Metro North and arrived at the E.R. around 10 p.m., four hours after Sini had arrived. She was lying on a cot in a room buzzing with doctors and sick people. She looked terrible - her freckled cheeks washed yellow, blue eyes glassy and frightened. I could see that she was still having trouble breathing. Have they given you anything? What are they saying? "Tylenol," she said. This is a long story, and the longest parts are painfully Kafkaesque. Suffice to say that watching your suffering beloved be ignored, in the place meant to attend such suffering, is nearly as difficult as causing her pain yourself. We waited for over 21 hours to be admitted for observation. The doctors ran a few tests, kept her for two nights and told her there was nothing they could see wrong, no illness that would manifest so many disparate symptoms. We left with a $24,000 bill, charged even for the television she didn't watch. Over the next few weeks, her symptoms persisted, with new ones woven in. Pain, rashes, swelling and headaches came and went. Her vision blurred, and she was fitted for glasses, but by the time they arrived, the prescription no longer matched. She became confused on the subway, knowing where she was, but not where she was going. At first, she doggedly continued working on the documentary. But increasingly, she spent the bulk of her days in bed. She went to a healer who shook her feet and told her to forgive her father, and a neurologist who didn't even examine her before suggesting that her problem was psychological. The only medical professional who didn't dismiss her symptoms was the physician assistant at our shared G.P."s office. When the insurance kicked in, two days after Sini was released from the E.R., we went to see her. She listened carefully, examined thoroughly and concluded that she didn't know what was wrong. I didn't know how rare this was at the time but have since come to appreciate no doctoral skill more than the ability to admit ignorance. She had one idea though: Sini had tested negative for Lyme disease earlier that month. But Lyme, known as the Great Imitator, is one of the few diseases that can manifest so many fluctuating symptoms. And the test was apparently notoriously unreliable. So the physician assistant decided to prescribe Sini a short run of the antibiotic used to treat Lyme. I grew up on Cape Cod, Mass., and nearly every member of my family has had Lyme. Like most people, I knew Lyme as a disease easily treated with a short course of antibiotics. And acute Lyme usually is. But if it isn't caught early, we learned, the disease becomes a nightmare - an insidious bacterial infection that can hide from antibiotic treatment in the large joints, heart and brain, only to re-emerge and reproduce for years. There has been much controversy over testing, treatment and diagnostic guidelines. The medical community basically falls into two camps: those who insist that late-stage Lyme doesn't exist, at least not in treatable form; and those (including millions of patients and their families, as well as the doctors who have successfully treated them) who insist that it does. While Sini researched Lyme online, recognizing symptom after symptom, I stacked the unopened notices from Beth Israel, from the labs, from the insurance company. My insurance was now covering some of her appointments, but almost none of the blood work. Her medical debt was steadily rising, and there seemed nothing I could do about it but stop opening the envelopes. Thankfully, the antibiotics helped almost immediately. Sini's breathing improved, her brain fog cleared significantly, and she had energy for the first time in months. But our doctor couldn't prescribe more of the drug without an official diagnosis. So we made an appointment with an infectious disease specialist. Because insurance companies refuse to cover so much of what he treats, he doesn't take any insurance at all, so it was $900, out of pocket. Ultimately, he made a diagnosis of late-stage Lyme disease and co-infections, and we agreed to his treatment: a "pulsing" of different medications over the next few months, including high doses of antibiotics, herbal tinctures and a foul yellow syrup typically used to treat malaria. Over the course of those months, I grew used to waking in the middle of the night to Sini writhing and twitching with involuntary movements and moaning with pain in reaction to the medicines fighting the Lyme bacteria (known as a Jarisch-Herxheimer reaction). She was covered with plum-size bruises, as if she were being beaten from the inside. And sometimes, on the subway platform, or just sitting on our couch, she would ask me if the floor was moving, or vibrating, or if I heard a high-pitched ringing. It wasn't, and I didn't. Increasingly, we spent more and more time alone in our apartment, canceling plans with friends and colleagues, to whom it felt impossible to explain what was going on. In the spring of 2011, I quit my adjunct jobs and took a full-time assistant professor gig in central New York - partly for the better health benefits - and we moved away from the city. The "high-deductible health plan" sounded ominous, but a patient H.R. staffer assured me that the college would cover much of the $3,600 we'd need to spend before Blue Cross Blue Shield paid for anything. She walked me through the complex system of deductibles, claims, approval and health savings accounts, and I left the office with a stack of papers so thick that she gave me a courier bag emblazoned with the college's logo to carry it. But meeting our deductible turned out to be harder than expected. We spent the $3,600 in the first few months, but it took many more months to get the bills processed. Each one had to be sent with a claim form to the insurer so that it could decide what amount was "eligible." I would send in the same form two or three times and still there would be some minuscule error requiring resubmission. And when it did miraculously travel this administrative digestive tract, a bill for, say, $360 would usually be approved for only around $120 toward our deductible. Sini had improved with the antibiotics, but the handfuls of pills weren't strong enough to beat the infections, and her traumatized stomach couldn't keep them down anymore, regardless. She needed a PICC - a peripherally inserted central catheter. This is a tube inserted into a puncture wound in the patient's upper arm and threaded through the veins until its tip rests just above the heart. It's a relatively common procedure for injecting high doses of antibiotics, though it comes with frightening risks of infection. The new specialist (whose appointments ran over $1,700 and who also didn't accept insurance) suggested that she would likely need a minimum of six to nine months of IV treatment. He also warned us not to hope for more than 28 days of insurance coverage. After that, we would have to hire a visiting nurse out of pocket or do the dressing changes and administer the treatments ourselves. In April of this year, we finally reached our deductible and the insurance coverage kicked in. Within days, at both doctors" strong suggestion and the warning that her condition would only worsen without more aggressive treatment, we set up the PICC insertion. We sat in the hospital after the procedure, surrounded by patients with IV poles slowly dripping bags of fluid and the same air of friendly resignation. There is a strain of patience cultivated in places like this, I've found. When panic, rage, defiance and denial are exhausted, and sickness remains, you are deposited into a room like this. Long-term emergencies require an emotional stamina of which the healthy have no need. As I watched the afternoon sunlight fall across the room and the first bag slowly empty into Sini's body, I felt a strange mixture of despair and relief. We had crossed some line that day, after which it would be impossible to pretend that what was happening might suddenly lift, like the fog of a bad dream. For three weeks, I injected Sini with pre-loaded syringes of antibiotics and the attendant saline and blood thinner. The PICC site requires a stringent, multi-step cleaning and redressing process, and I took careful notes from the visiting nurse when she came to change the dressing. Then the 28 days were up, and I took over. In an enormous stroke of luck, one of Sini's closest friends is a PICC nurse and mailed us free supplies, including alcohol swabs, sterile gloves, and IV tubing - saving us thousands of dollars. The first time I changed the dressings, she was there via Skype, her anxious face filling the laptop. Sini and I sat on the floor. Steadying my trembling hands, I scrubbed the open puncture wound with swabs doused in searing chemicals. I could not fan, or blow, or even hold her hand without contaminating the sterile field. "I'm sorry, I'm sorry, I'm sorry," I chanted as she gritted her teeth and turned away, tears seeping from her closed lids. "Stop apologizing," she whispered, but I couldn't. I charged the second month of her medication on my credit card. Then, I drafted a letter to everyone we'd ever known. Asking for help has never been a strength of mine. Sini is similarly disposed. But we were out of alternatives. We set up a page on the crowd-funding Web site Indiegogo. One of Sini's best friends, a photographer, designed it. I wrote the copy. Another friend, a filmmaker, edited a video. And others agreed to spread the word. We modestly estimated the PICC treatment costs for the coming months (not including living expenses or the considerable debt already accrued) at $12,000. None of us expected to raise the full amount over the 60-day period, but any little bit would help. One morning this May, about an hour after the campaign went live, I checked my phone while out running errands to see if anything had been donated. There was already $1,500 in pledges. I refreshed the browser to confirm that I was seeing correctly, and the number jumped another $300. I shakily drove home and opened the computer. We had raised more than $3,000. By the end of the first day, we had raised $8,000; by the end of the second, we had surpassed our goal. Knowing that Sini would be able to continue her treatment was a magnificent relief. But what so blindsided me and filled my heart were the comments, e-mails, texts, Tweets and Facebook postings poured toward us in hundreds. Most of the donations were between $20 and $100, and the vast majority of these were from family, friends, New Yorkers and others who had performed or worked with Sini, or been helped by her work - and from other people suffering from late-stage Lyme (and other diseases that insurance fails to cover) thanking us for going public with our struggle, for raising awareness and helping them to feel less alone. Sini and I had both felt completely detached from our community for the past two years. Unmoored, and consumed by our situation, we had felt guilty requesting the help of these people from whom we had alienated ourselves. But it was as if they had just been waiting for us to ask. Two months have passed, with two days left in the campaign, and we have raised over $19,000, a number beyond my wildest expectations. Because here is the thing: we didn't expect anything. It is not our community's responsibility to pay our exorbitant medical bills, to prevent our lives from being annihilated by the cost of illness. It is our government's responsibility. Perhaps, for others like us, the Affordable Care Act will make a difference. My hope is that by the time the legislative changes trickle down to our lives, Sini's health will have improved enough that she will no longer be in danger of being bankrupted by medical expenses. For now, she seems better. We moved back to New York City - I'm returning to adjuncting because the full-time insurance turned out not to be worth it, and here we can be close to friends and Sini's work. There have been more trips to the E.R., and several complications, but there was a day last week when Sini looked at me, wide-eyed, and said: "I feel O.K. right now. I'm not in pain or exhausted. I can breathe. It was the first time in almost two years that she could say that. Melissa Febos is the author of the memoir "Whip Smart."