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Tales of Survival
Living in Spite of It All

By Bil Romain

July/August 2003

Bil Romain

Editor's Note:"Tales of Survival" is a new feature open to anyone with a personal success story to tell about living with HIV. I'm proud to inaugurate this column with the inspiring story of my dear friend Bil's amazing recovery. Send your tale of survival to TrekBearGA@aol.com.

It was in April of 1997 that my life changed forever. Because of a case of shingles my lover had the previous summer and my own failing health, my lover and I got tested for HIV. Both of us proved positive. Although I was HIV positive, it didn't explain what was wrong with me. It was something that went beyond HIV -- I was tired all of the time and doing the least little thing, like tending to the yard or just walking around the mall, put me completely out of breath.

We live in Orlando, Florida, and we're fortunate enough to have a few well-funded, well-staffed and helpful HIV and AIDS organizations here. I needed these organizations. To shed a little light on myself, let me stop and tell you that I am a house husband. My lover works as he has for years and years and I take care of the yard, the house, cooking, laundry, the budget, grocery shopping ... you get the idea. I'm a house husband. Being a house husband, I have no insurance and with no insurance, there are very few doctors that would even look at me, much less take me as a client. Orlando is also fortunate enough to have one of the best health care clinics in the state. I needed these organizations and the health care clinic. I took all of the necessary steps, got on Medicaid, set up appointments and started seeing a doctor. At first, even he was stumped at my now rapidly declining health. My stats weren't that bad: CD4 (T-cell) was over 400 and my viral load was under a thousand. My color was good and my eyes were clear, but still, I could barely walk.

I can now look back on myself at that time and admit that I was a lush. I drank, and I drank a lot. A whole lot. And, I had done so for a number of years. A long number of years. My drink of choice? Beer! Cheap beer! My color might have been good and my big ol' eyes might have been clear, but my poor old worn-out liver had simply had enough. All of my tiredness and physical exhaustion was due to my liver shutting down. I was going through complete cirrhosis of the liver. By the time my doctor found the root of the problem, it was too late. At the beginning of June 1997, I almost died of dehydration. My lover rushed me to the hospital where, in the ER, before they could even get me into a room, they put eight bags of fluid in me just to stabilize me. While in the hospital, the doctors assigned to me found out I was HIV positive and hadn't been put on meds yet. Without notifying my doctor, they put me on AZT and Epivir, and also put about 20 more bags of fluid in me. I am six feet tall and weighed a whopping 98 pounds.

I never sued over the fact that they never consulted my doctor before putting me on the AZT and Epivir -- what would have been the use? I was already dying. After about four days, they sent me home, health still declining. Even the notable doctors were stumped at what was causing my illness. Once home in the middle of June, my doctor took me off the AZT and Epivir. The following week, I was bedridden and wearing adult diapers. I had lost all of my body hair and was swelling to staggering proportions. Going through the DTs, allergic to meat and all dairy and totally dependent on my lover, the end was inevitable. By the end of June and without my knowledge, my doctor told my lover that I had less than six weeks to live, and before I died, the poison from my own system would go to my brain and drive me nuts.

Now that's a scary thought.

The end was so close, my lover called all my friends and family to inform them there would be a service soon. July came and I was so swollen with fluid from my own body, my legs and stomach were beyond huge. My wedding ring had long been taken off and my navel had flattened out evenly on my monstrous gut. I couldn't even sit up and get out of bed without help. My liver had not been working for about 2-1/2 months by then and I had been in and out of it for a while.

My lover continued to work because he couldn't sit at home and watch me die. He took care of me when he came home. He told me later that every morning, he worried if it was that morning that he would wake to find that I had slipped away during the night. His job was great to him, telling him to take the time he needed, but he just couldn't. Finally, after blowing up at me out of anger at me for not trying to find the strength to help myself, he calmed down, looked me in the eye and told me to decide. Go or stay -- doing both wasn't working. He was giving me a choice.

I had a choice. The door was there, and I knew what was on the other side of it. I had been to the vast, empty calmness more than once. I knew what it was like on both sides. I had a choice. I wasn't being pulled and I didn't see a white light -- no long-dead relatives beckoning me, no Voice of God. I am one of those rare, privileged people out there who, along with fate, made his own choice. Mine was life. Living life was the better adventure. By the beginning of August, I was eating every snack food out there -- M&Ms, apple chips, candy, potato chips, carrot and celery sticks, anything that my lover could put in a Ziplock bag and lay on my nightstand. By the beginning of September, I had shed the adult diapers, was getting around in a wheelchair when we went out of the house, and while I was in the house, I was up out of bed more and more. The best news was that the bloated swelling was going down. This meant that whatever part of my liver that had lived through my excessive drinking over the years was coming back to life. It was around then that I started cooking the worst-looking concoction of meat, dairy and raw vegetables that this world has ever seen. I ate this ... mess that I mixed together with lots of mayonnaise spooned into pita bread. I must have lived on that ... mess for over a month. By the beginning of November, I was almost totally out of bed, had all but ditched the wheelchair for a cane, and the swelling was completely gone.

Just before Christmas of that year, I walked into my doctor's office without my cane, standing tall, dressed to the nines with a gift for him in my hand. He had tears in his eyes; I had tears in my eyes. It was a big moment in both of our lives. By the beginning of 1998, I was put on a cocktail of Viracept, Zerit and Epivir, along with Oxandrin and some vitamins. Being put on the three-combo cocktail was something my doctor was unsure of. He didn't know if my liver, battered by years of cheap beer, could take any more battering by meds intended to stave off the HIV. This was also a big moment. Through the next month, my liver held steady, the meds were working and my numbers started to rise and fall appropriately.

So what have I done with my life since then? In February 2001, I started writing my first book, The Shamesamson Manor: The Tale of the Simple Crown. It's a young adult adventure set in Ireland, chock full of sprites, brownies, humans good and bad, pigs, a 400-year old manor house, a leprechaun or two, a flock of Easter chickens and a 17,000-year old elf. In May 2002, my lover and I decided to take the trip of a lifetime: we went to Rome, Italy, for five days. We stayed in a five-star hotel just outside the city, caught the bus into Rome and walked around the city for four solid days, seeing everything. The Coliseum is so much more massive than any movie could ever show. We walked where Julius Caesar walked in the Forum, saw the Vatican City and the Sistene Chapel, ate pizza and devoured more Italian pastries than you can shake a noodle at. We even managed to take a bus down to Pompeii for a day. Now that's a place: a fully functioning city with sidewalks, fast food restaurants, temples and so much more. We saw the rock beaches of Naples and bought the best pastries mankind has ever made in Sorento. We took nine rolls of film and had the time of our lives. When we got back, I finished writing my book and am now in the exciting and exhausting process of getting it out to publishers. Like all writers, I'm 150% sure it will get picked up and published.

Now, in 2003, I'm soon to start Book Two of The Shamesamson Manor, There Once Was Atlantis. Life -- and the choice I made, and still make, to live it -- was the right choice. It sounds so clichéd, but life really is so short -- trust me!

The really important question: How's my HIV? My CD4 (T-cells) are over a thousand and my viral load is zero. What miracle things do I do? I take my meds and I live my life. It's that simple. Yeah, there are days when I feel like hell, but I go on and I go on without a big ol' HIV chip on my shoulder. I have it and whining, complaining and moping about it isn't going to cure it. I laugh, I smile and I don't think how bad my life is with this, because it isn't. Instead, I think, "I don't know how long I have, but I'm going to make the best of what I have while I have it." Almost dying taught me just how much we all take for granted, which is life and living it. Going to Rome taught me something, too. We are all connected and not so different, after all. It also taught me that dreams really do come true. I don't worry about the future and how much time I have left. None of us knows that, and besides, I'm having too much fun living in the now of my life.

I stopped drinking in 1997 and haven't looked back. I didn't need AA or any other self-help group -- my demon was exorcised by almost dying. My lover, Bill Dockery, and I have been together for over 16 years, and we plan to spend another 16 or more years living our lives together. If my story helps even one person with HIV to not give up, to go for your dreams and really live your life to its fullest, then everything I've gone through will have been worth it.

And I still love apple chips.




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