Yves Brunet's Epic Journey With HIV
Yves Brunet has been to hell and back. Here, he reveals how, after a seemingly endless string of hardships, he still has room for gratitude, humour and love.
I limp out of the dermatologist's office, where I just received two less-than-encouraging pieces of news. First, the doctor confirmed that I likely have metabolic syndrome. My psoriasis, which has made a comeback after a 10-year hiatus, is common in people with the syndrome. And, like many people with HIV who took antiretroviral drugs during the late '90s, I have a number of symptoms that, together, define it -- an accumulation of fat in the belly area, high triglycerides, low HDL (good cholesterol) and high blood pressure. I also learned that the pain in my foot and knee is likely due to a persistent condition called psoriatic arthritis, for which my treatment options (as a person with HIV and cardiovascular problems) are limited.
"Do I really need this?" I think to myself. I take a deep breath as I open the door of the taxi waiting to take me from Ottawa, where I live, across the river to Collège Saint-Alexandre, in Gatineau, Quebec, where I have been asked to tell my story. I have given personal testimonials many times before, but I take this time in the cab to review which anecdotes I will share today. I may be feeling low now but I know that speaking will lift my spirits, as it often does. I decide to start at the beginning.
In October 1986, at the age of 27, my then new partner suggested we get tested for HIV before engaging in riskier sex. I was sure my test result would be negative. Three weeks later, my family doctor told me that I had tested positive for the virus that causes AIDS and that he had no idea how long I had to live, as there was no treatment available. "But you know," he said, "I could cross the street, get hit by a bus and die before you." Though that might have been true, it offered me little comfort. But it was what he said next that floored me: "And I will refer you to a psychiatrist to change your sexual orientation, as it is the cause of your infection."
Once home, I told a few friends, my parents and one of my three siblings. Then I went into isolation, though I continued to work every day as a human resources specialist with the now-defunct federal Department of Communications. I was petrified that people at work would find out.
Three years later, I was brushing my teeth one day and noticed on the side of my tongue some white stuff, which didn't go away when I tried to brush it off. I went to see my new doctor, who by then treated many people with HIV. He looked at it and said: "Oh, that's hairy leukoplakia." As a francophone, the only thing I heard was "hairy" and I certainly didn't want anything hairy on my tongue! He continued as if he was talking about the weather: "Oh, that's something that happens when one's immune system is compromised." That sentence burst the bubble in which I had been moving around with crossed fingers, hoping I would not develop AIDS. Taking his diagnosis as evidence to the contrary, I took the money I had saved to buy a house, bought a round-the-world ticket and took off with a friend for three months.
Upon my return, I attended the funerals of nine friends over a three-year period. Not only was I losing people I cared about, I was going to the funerals of people who had died of the same thing I had, for which there was no effective treatment and no cure. It was emotionally draining, to say the least.
When my CD4 count hit 200, I decided to leave my job. I announced to my 88 colleagues, 21 of whom I managed, that I was HIV positive and approaching the AIDS stage of the disease and that I was going home to take care of myself.
Never mind Freedom 55, I was now retired at 34. That's fun for about three months, but I needed to find what I was meant to do if my time was limited.
Shortly after retiring, I began to feel stomach pain, and though I told my physicians, my complaints went nowhere. This is when I realized that doctors did not manage my health -- I did! So I insisted on getting tests and was diagnosed with cytomegalovirus (CMV) gastritis on December 15, 1995. I was put on intravenous treatment (Ganciclovir), on an outpatient basis, for 14 days. I asked my doctor innocently, "And then it will be gone?"
"No," he said. "Afterwards, you will continue with the same treatment three times a week."
"For what, a month?" I asked.
"No, for the rest of your life."
"That raises an obvious question," I said. "How long do people normally live with this condition?" I needed to know.
"Patients with your condition, on the medication we have now, live on average two years." I thanked him for being frank.
A few months later, during a routine dental appointment, my dentist noticed a lump in my hard palate and suggested I show it to my HIV specialist. One week later they told me that I had Kaposi's sarcoma (a kind of cancer that causes patches to grow on the skin, in the mouth or elsewhere in the bodies of people living with HIV who have very weakened immune systems). After 11 days of radiation treatment, I lost one-third of my moustache on one side. For the sake of symmetry, I shaved a third off the other side and ended up with a Hitler moustache for about three weeks. Other tumours sprang up on my neck and shoulders, but I chose to leave those alone for the time being and had them treated later.
Roughly two years after my diagnosis of CMV gastritis and AIDS, an ophthalmologist informed me that the virus in my stomach had decided to manifest itself in my eyes. He suggested I go for injections in the eyes to prevent CMV retinitis from doing more damage and causing blindness.
What choice did I have but to undergo the treatment, one for which sedation is not given lest the eye get scratched in the process? He told me that there was an experimental treatment in the U.S. where they put the patient to sleep (that sounded good already!), opened the eye and inserted a bag that released medication over a six-month period. "What happens at the end of the six months? Do they replace the bag, like with a vacuum cleaner?" The eye doctor hesitated and said: "We don't know, we haven't had a patient live that long."
By March 1997, I had been on two protease inhibitors for over six months and my viral load was very high: over 721,000 copies. Not good. I tried a third one and -- eureka! -- my viral load plummeted. After four and a half months of weekly injections in the eyes, I no longer needed them. The IV treatments I received three times weekly over the course of two years also stopped. But instead of celebrating, I sank into a depression. My multiple losses -- my job, my network of friends, my looks and some of my abilities -- and my largely unacknowledged grief were all catching up with me.
Three years later, my retinas became detached and, after eight surgeries, the eye doctor informed me that I was legally blind, that nothing more could be done. I was given a form to get my white cane and another to be declared disabled according to the Income Tax Act.
For the first time in my life, I considered suicide. I asked Rob, my partner of 11 years, to help me do it. He said he would help me but that he needed some time. For me, time was equal to suffering, but I loved him and wanted to give him the time he needed. While waiting, I got used to my low vision and to the many tools that help people with it (my white cane, magnifiers, special software, colour-coded measuring cups and spoons, among others).
Since then, I have had a heart attack and a stent put in. I am a poster boy for lipodystrophy. I also have DILS (diffuse infiltrative lymphocytosis syndrome), which involves the swelling of the parotid glands, giving me a chipmunk look for which I had unsuccessful radiation treatments.
But, somehow, life went on. Looking back, you could say that I had to reinvent my life. How? There was no sign from the sky above that told me what my new mission should be, but eventually, during my darkest days, I developed a tool I call la mesure de l'amour, which I used as a guide. Before doing something, I would ask myself, "Is there love in this activity?" If there was, I would do it, and if not, I would move on. I needed to know that whatever I was doing was either loving or helping somebody. I pictured digging a hole in the ground: I could either focus on the hole (what was missing) or concentrate on the mound of earth and what I could plant there.
When I have felt bad, I have tried to help others. There is nothing like it to make me feel better. So, I began facilitating support groups and organizing information sessions for other people living with HIV; I have also served on local and national boards (I've been on CATIE's for the last seven years). Yes, I continue to deal with pain in my body and I take 18 different medications, but my health is generally much better. And when I sit down every night with Rob, now my husband, to enjoy a meal, I feel truly happy. My goal is to appreciate what I have and feel gratitude for every day.
As I pay the taxi driver, I feel ready to do my testimonial, to encourage people I have not yet met to open their hearts, and I realize it is not such a bad day after all.
To get in touch with Yves, you can email him at firstname.lastname@example.org.