Sandra’s Story: Living with HIV

Author's note: Before I began medical school, I had the privilege of spending three months in the Dominican Republic working at a clinic that cared for patients living with HIV. During my time there I met many incredible people whose lives are testimonies not only to the power of modern medicine, but also to the power of the human spirit and the human connection. This is a story inspired by one of those people. Details of this case have been altered to protect patient identities.

I am a woman living with HIV. I write to tell you my story so that you can know this disease as more than a description in a textbook or an article in the newspaper. It is the story of an ordinary woman who was given a devastating diagnosis and has learned to live again. I promise to tell you the truth about the pain and the joy, the challenges and the victories. This is my story.

I was born in a small city about an hour from Santo Domingo, Dominican Republic, in 1974. I had a happy childhood filled with memories of family picnics at the beach, and baseball games and fashion shows with my neighborhood friends. I remember shopping trips to the capital and going to the movies. I am the third of six children and there was always something going on at home: a good meal on the stove or a wrestling match between my brothers. There were hard times too: times my parents struggled to feed all of us. But whether or not there was food on the table, there was always love surrounding it and joy in being together.

After I graduated high school, I went to work on one of the British Virgin Islands as a hotel bartender. A few weeks after I got there, one of the bellboys caught my eye. He had a ready smile and used to tease me about the uniform I had to wear for my job. He told I could make even a gunnysack look sexy. We fell in love and soon got married. We continued to work together at the hotel, sneaking moments to kiss in the linen closet or steal down to the beach together. We were young and blissfully in love; we felt invincible. After a couple of years, I got pregnant and we had our first child, Emmanuel. Life adjusted to a new pace, with more stress, sleepless nights and a third little person in what used to be a perfect twosome. It was harder to find those moments that the two of us could sneak away together.

After a few more years, I got pregnant again and my happy-go-lucky husband decided that two babies were two too many: he had had enough. He didn't want the responsibility of a family, so he left us. I was desperate, filled with worry about raising my two children alone. I decided to move back to the Dominican Republic to be closer to my family. Even though it seems like I would have resented this new pregnancy because it precipitated the loss of my husband, it became for me the hope for the future, the promise of good times soon returning. I had long been wanting a second child and even without a husband to help me, I was excited to be a mother again.

Soon after my return to the Dominican Republic, I got really sick, with an infection that traveled to my brain. While I was in the hospital, they did a routine HIV test. I didn't think anything of it at the time; it was simply one of a thousand tests they were performing to figure out why I was so sick. I didn't know anyone with HIV or AIDS; I had heard of it, but only as a distant thing that affects people in Africa. One day I was given a simple white envelope. I had no idea what it contained and paid little attention to the markings on the outside. I opened it to discover an "atomic bomb." The words blurred on the page as tears came to my eyes: "HIV positive."

I felt numb, in shock. I knew that this was supposed to be awful news, but I just couldn't get my head around it. I remember being more upset about how itchy my hospital gown was than the devastating diagnosis I had received. It was later that the depression set in. I thought my life was over. To me, HIV was a death sentence. Everything I had ever heard about the disease offered me no hope to cling to whatsoever. I thought I was going to die very soon. And I was alone.

People often ask me when I got infected. It is very hard to know these things because sometimes the disease takes a long time before you have any outward signs of it. Ironically, I think of my infection as a "parting gift" from my first husband. I learned toward the end of our relationship that he had been sleeping around the whole time we were together. He is the most likely source, although I will never know for certain.

By this time, I was five or six months pregnant. Due to my own ignorance and the misinformed advice of the doctors, I decided to terminate my pregnancy. I still go back to that day and curse myself for making the decision without learning more first. But the truth is, there was no more to learn at the time. HIV was still so new and so unknown that a lot of mistakes were made out of ignorance. Needless to say, losing that child only deepened my despair. I had so wanted that second child. I felt such guilt. Not only was I unfit as a wife, I was unfit to be a mother as well. I was beside myself. I couldn't sleep at night. Instead, I went through lists in my mind of all the good things and all the bad things I had done, trying and failing to figure out what I could have done to deserve this.

To make matters worse, my family members, who had always been so loving, were suddenly scared to touch me. My father wouldn't share drinking glasses or silverware with me. Each time he subtly moved his glass another two inches away from me at the dinner table, I felt so isolated. I now know that his love for me never faded. With my consent, my parents took my son away from me to raise him in "safety." I agonized over giving my son up, but felt it was the best I could do for him.

I hungered just for a simple human touch or a connection of any kind, but no one dared come near me.

In the midst of my sorrow, I tried to pull myself together and find work. I went to the capital on a special trip to buy a suit that I could wear for interviews, spending money I really couldn't spare. But I couldn't find a job. In the past I had worked as a bartender at local hotels and resorts. Every place I interviewed sent me off for routine testing, and I knew that because I was HIV positive I would never be hired. I filled out application after application and went to interview after interview putting on a brave face and pretending everything was fine only to be rejected again and again. I began to feel truly desperate.

It was around this time that I found the "Clinica de Esperanza y Caridad" (Clinic of Hope and Charity). I came under the medical care of two wonderful American doctors, Paul and Cynthia, and met others who shared my diagnosis. My life finally turned around and I found real hope again. The support group at the clinic became a family for me. Though we were from all different backgrounds, economic levels, parts of the country, and sexual orientations, I found that I could finally speak freely without fear of judgment or rejection. We were deeply joined by an intimate understanding of what each of us was going through. The others provided the support that I very much needed: we laughed together, cried together, and just persisted together, gaining the courage to get out of bed each day and go forward despite all that was against us.

It was there in the support group that I also found a place to give back and to serve. After a time, I became the group leader, and that experience inspired me to go back to school to become a counselor. I made it my goal to learn all I could about HIV, this condition that had become my living reality. I wanted to work to change the lives of others living with HIV and hopefully spare them some of the pain and loneliness that I had experienced. For example, I imagined a new system where rather than having to find out about a positive test by opening an envelope like I did, the clinic could offer pre- and post-counseling for the HIV testing so that the individual would be supported throughout the whole awful, gut-wrenching process. And if the worst was true and the test was positive, then the person would be welcomed into and cared for by the loving family the support group provided. When I finished my training, the clinic offered me a job. I was thrilled. It was not only the chance to become part of an incredible team, but also to work at something that I had become so passionate about.

Today, I know each of our four hundred patients by name; each one carries with him a piece of my heart. They come to me, to us, when they need hope or food or a job and we do our best to help them, even if all we can offer is a listening ear. I give presentations in schools to adolescents teaching them what HIV is and how to protect themselves. We have done free testing in local communities and at the jail, always making sure to follow up with any positive tests, drawing new patients into the welcoming community at the clinic. And I have shared my story countless times, hoping in some small way that it can make someone else feel less alone or be more understanding with a sick friend.

Happily, I experienced an incredible and unexpected blessing through the support group when I met my second husband. I started looking forward with even more anticipation than usual to the support group meetings when a certain Juan Pedro began to attend. I vied for a seat next to him every time. I had to wait six months before I could get him to ask me out, faithfully sitting next to him at each meeting. We respect him and listen when he speaks at the meetings because we know that his comments will be thoughtful and insightful. He is very different from my first husband. His experiences have made him quiet and reflective, but wise. The truth is it took a lot of courage for both of us to love again. I felt ashamed, undeserving and inadequate. Yet I could not help hoping for a second chance at love.

We got married three years ago, in the big common room at the clinic. I wore a beautiful white dress and walked down the aisle with a full heart and eyes brimming with tears on the arm of my brother, in front of a great big family of witnesses. For me, our wedding day for me was a picture of heaven: overflowing with hope, new life, and so, so much joy and love. It was such a different image from where I had been just a few years earlier: alone, unloved, and hopeless. My son Emmanuel lives with us now and the three of us are a happy family. I cook all my favorite recipes and our lives are full of laughter, love, and good friends.

Unfortunately the rough days are not completely behind us. Not too long ago, Emmanuel came in from playing with the neighborhood boys visibly upset, bleeding from a cut on his cheek. I was outraged and scolded him for fighting! But as I pressed him, he reluctantly admitted that he had been fighting to defend my honor. The neighborhood boys had teased him yelling: "Your mom is a ‘sidosa'!" (a derogatory term for a woman with AIDS). That was the day I had to tell my son the truth about my diagnosis. His eyes grew wide then filled with disappointment. It was too painful for words. Juan Pedro held us as we all cried.

Judgment faces us even outside social circles. Despite government laws against it, companies continue to discriminate against those of us who are HIV positive. Consequently, Juan Pedro cannot find work as an electrician, despite his advanced training. He is left picking up random odd jobs and we are left with the constant stress of not knowing whether my salary and the little he can make will stretch far enough to pay the bills.

And though hope still sustains us, sorrow is ever-present. A number of those whom I know and love from the clinic have gotten very sick and passed away. Not only is there the deep pain of watching a close friend waste away, but also the fear creeps in that someday soon this too will be my fate or the fate of Juan Pedro. Up to this point, our health has been good. Our viruses have responded well to treatment and we can live our lives, something so simple that we now embrace as a glorious gift. But as I have daily reminders from my work at the clinic, our viruses may develop resistance tomorrow and our current treatment plans may fail us. We too could get fevers or tuberculosis and begin to waste away.

Several of the patients with whom I have worked have named their babies after me. In each of them, I see part of the child that I lost, that I chose to give up because of my own ignorance and that of the doctors. The desire to have another child has never left me. But Juan Pedro and I have decided that we will not pursue it. We have spent countless hours in heart-wrenching discussion but decided in the end that we could not bring ourselves to take the risk: not only the risk to a baby, but also the risk of re-infecting each other.

But despite all, my hope remains. Rather than living in constant fear or sorrow, my experiences have taught me to be thankful for each good day: every day that I am healthy and can be with the people that I love and participate in meaningful work. For me and for many others, HIV has become a chronic disease like hypertension or diabetes, maintained by daily medicine. And people have lived now for twenty years past their HIV diagnosis. In spite of those examples, some days still feel like a race against the clock. Every day, I have to choose hope so I can offer hope to others. I now cling harder to life, because I understand how precious my life and relationships truly are and how easily and quickly I could lose that which means the most to me.

Without the clinic, I struggle to think where I would be now. Perhaps I'd be lying dead in a ditch, long forgotten and alone. Through the care, support and love I found there, I have been given a second chance at life, at love and have been granted a new vocation. That is what makes each day worth living and fighting for. I am Sandra Guzman and this has been my life, living with HIV.

Author

Andrea Owen, Class of 2015

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