Become a Fan
Testimonial- I survived-
By Anick Lavigne
Saturday, September 11, 2010
Not rated by the Author.
A Glimpse inside the life of Dee-
A resounding testimony that celebrates the 1996 triumph of the Protease Inhibitor (Cocktail) in the great battle against AIDS, in a time where the deadly disease was terminal and our children was dying-
*Dee arrived on the three east unit of our Facility at three pm on a Thursday afternoon. Two paramedics wheeled a stretcher on which lay a small form draped in white sheets down the corridor and entered the room 305. Mr. Santiago had passed-on in that room only that morning and the entire space had been sanitized for our next arrival. Gently, the uniformed men eased the frail and still figure into the designated bed.
Immediately the nurses sprang into action, grabbing every needed assessment tools: Blood-pressure monitor pulsometer, thermometer, and assessment papers and surrounded the young woman. This scene was not new to us: We've seen our share of terminally ill patients arriving from area hospitals, sent to our Facility to die peacefully and comfortably in a more home-like environment; after all, that was the goal of our founders: They wanted to create a Home where people in the last stage of AIDS would die with dignity and respect, comfort and human kindness, no matter who they were and where they were coming from. As always when the men and women who were struck with the deadly disease crossed our gates, they were catatonic and on the brink of expiration. At that point, death is welcomed as a long awaited companion.
Dee was one of these ready-to-die patients when she came to us. Except for the hospital gown hunched around her neck, she was completely naked under the white sheet. Her wasted body, where ribs and other bones protruded like sticks was barely covered. What was obvious was that not only she was furled up in a fetal position but one side of her face drooped from the after-effects of an evident stroke. Her jaws were slacked and she drooled abundantly from severely dried and cracked lips. Whiffs of the antiseptic odor emanating from under the sheet pervaded the front desk.
Just then, the tall opaque curtains separating the rooms into two equal portions were pulled shut, hiding her from view. My seven to three shift was ending and I made my way home reflectively, reminiscing on my youngest sister Yvette who had died from the disease in 1983 at the tender age of 25. My name is Laurie and I am a certified nursing attendant in a new 220 bed skilled nursing facility located in the lower East side of Manhattan and dedicated to the care of patients in the last stages of AIDS. We opened our doors in 1995, in response to the AIDS pandemic which was cruelly and indiscriminately decimating young people of all races and gender between the ages of 22 and 44.
When I heard of this new AIDS facility opening its door in the Village, I recognized it as a second chance given to me to do for others what I couldn’t do for Yvette, my little sister. I quit my lucrative clerical job and here I was, grieving over and over, every time a young man or woman died in my arms. Before I started this job, just like every body else, I had feared death more than anything. Now, things were different. To me, working with AIDS patients was the only way I could give back to the younger community dying from the disease. When my sister Yvette caught the disease in 1983 and eventually died in just a few months, I had just came to the United States on a tourist visa and couldn’t even travel back to say goodbye. Now, I care for her every time I give care to one of my patients. Every patient wheeled on my unit is Yvette, calling for me, needing me.
The work is hard and the secondary diagnosis associated with the deadly virus were numerous: Kaposi Sarcoma, Wasting Syndrome, the crippling Peripheral Neuropathy who rigidifies the leg muscles and keeps them bed-bound with excruciating pain, Uncontrolled Diabetes and its resulting blindness, malignant hypertension resulting in stroke, depriving them of speech, Cirrhosis of the Liver, the full spectrum of hepatitis A, B and C, not to forget the multiple forms of herpes for which so far there is no cure and many others. The most common of them all is the ever-present debilitating diarrhea, which is most feared by CNA’s like me because it is the hardest part of the job.
Weeks went by. From the nursing station across from her room, Dee was never out of one the nurses' sight; thinking her passing imminent, the nurses kept her on a constant comfort care. We cleansed and disinfected daily the via-peg site of her feeding tube, checked and renewed the dressing to ward infection. Her lips and skin were kept moisturized and a physical therapist arrived daily to practice an easy and painless range of motion of her upper and lower limbs. At that point, no one will be surprised if the shallow breath that rose steadily from her chest stop suddenly. However, Dee's full recovery was like a miracle to every one of us.
Suddenly one morning, she sprung into a sitting position and before anyone could intervene, pulled the tubes from her arms and her stomach. Eyes wild, jerky limbs and teeth barred like a wild animal, she fought to get off the bed. The year was 1996 and the new Protease Inhibitor, commonly named "cocktail" had just exploded on the health care market. It was immediately made available for experiment in the relentless combat against the deadly virus; something had to be done and fast
"It's just a defense mechanism." The doctor explained later-on after giving her a sedative to keep her calm and relaxed so she wouldn't hurt herself. "What just happened proved that she is now awake and is aware of her surroundings. We've been changing her meds, replacing them with milder ones, more appropriate for her fragile state and it worked. We’ve also added the new Protease Inhibitors (cocktail), and she is reacting to the change. That's very good news."
And he was right. In the space of a few months, we were amazed at Dee’s transformations. First, she stopped drooling and kept her mouth closed most of the time. Then, she unfurled her body, stretching, laying sometimes on her side or on her back, making it easier for nurses to access the numerous and deeply infected sores in her groin area and to provide her with most necessary wound care. However she was still deprived of speech. Wide eyes followed every move we made, as if she was still trying to find out who we were and what she was doing here. She opened her mouth and swallowed a few spoonful of mash food. She liked sweet and had no trouble taking all her meds crushed in apple sauce.
Dee was part of my assignment. As a nurses aid, I was responsible for her ADL. I washed her, change her gown, made her bed with renewed fresh bed sheet every day, fed her and combed her hair, all the while, talking soothingly to her as if she could understand and answer back to me, hoping that she would. And one day it happened; she tried to talk back. First, she mumbled unintelligibly, and then grumbled, fighting to express herself. I patted her hand: “Don’t worry! Don’t try to force it!” I whispered warmly to her. “It’ll come! You’ll see! Just keep listening.” I was very happy of her progress. The “cocktail” was working and she was one the first patients to have a positive response to the new medication therapy. Every morning we'd transfer her to a wheelchair where she would remain for a few hours. Sometimes, we wheeled her around, to get her acquainted with the unit and with other residents, to let her know that she wasn't alone.
Soon she began visiting our brand new Rehabilitation Center located in the penthouse and as a result, she wheeled her chair with her left hand all over the unit, her mind still in the fog of dementia but slowly winning the battle for her life.
Amazingly one morning, she talked. She handed me a piece of paper with a name and a number on it: "Sandra," she mumbled, pointing to the phone with her left finger. That was how we found out that Dee was a mother and had three children. To us, Dee was the first of the many small miracles that would soon take place in our Facility. Thanks to the dedicated care of our nurses and with the right mixture of medications, Dee was transformed back into the woman she must have been before the disease claimed her body. She still limped from the right limb, but before long, this also was resolved. She smiled, talked, even smoked. Yes! Unfortunately Dee smoked and nothing we’ve said or done would make a dent on her habit. That was a battle she was going to have to wage when she was good and ready.
Months went by. Dee was no longer in need the watchful eye of a one-to-one certified Nursing Assistant. She no longer needed around-the-clock watch; she was completely independent. These days, she woke up at dawn and wouldn't step out of her room until she was perfectly made-up: Bright red lipstick, brown foundation to cover blemishes, blue eye-shadow and blood red lacquered nails. She picked up her trays, ate in her room or in the dining room if she wanted to, walked to the smoking room to smoke a cigarette and socialize with her friends. These days, she had her eyes on a new boyfriend. "Roberto is cute but, " she told me, laughing mysteriously "this is going to be a challenge; he already had a girlfriend on the next unit." I laughed at her audacity: she was about to steal someone else's boyfriend!
"Yeah?" I asked really curious. "Who is she?"
“I don’t care who she is! He’s mine! Wait and see!” oh yes! Dee was back to herself.
Later on, she sat in the recreation room watching the elevators: her children, Sandra 17 and Madeleine 12, visited every evening. Her 10 years old boy lived in her country with her mother.
World AIDS Day was always a grand affair in our Facility. Every year, different celebrity guests graced us with their presence and performed for our residents. In 1996 we had the singer Jewel. Then we had Wycleft Jean, the rapper Mel, and many others. On this day, our residents, happy and excited took special care of their toilet for the performance and the following big party in the penthouse.
No one could forget how Dee stole the show on world AIDS day 2005. She was the star of the celebration. At the end of a performance by the young rapper named Mel, an up-and-coming R&B star, she surprised everyone by walking boldly to the well guarded table where the young man was signing pictures to his fans in the audience. Brazenly, a bit theatrical, she looked him in the eyes and extended her right hand toward him in invitation: "Dance with me!" She commanded.
After the initial shock, the bodyguards, the staff members as well as the residents surrounded the couple, clapping and cheering. She twirled and pirouetted in the artist's arms, mouthing the song of the R&B star, as if the words were her own. The R&B singer was delighted to have found a true fan, one who knew every word of his song by heart and sang it back to him.
From where I stood, I watched our nurses and as usual, I was deeply impressed. We never thought of ourselves as exceptional but I always do. Many of us do. We are exceptional! To have joined our facility in the great battle against AIDS is extraordinary but to wage a war against the deadly disease on an every day basis is dedication. I saw it everyday. I lived it! Let's not look very far for heroes; we have our own right here, in the Village Care of New York.
The day Dee left us to live independently in her own apartment was a triumph for the VCNY even as many of us shed a tear or two. She was our first miracle.
"I can't believe it! I am going home, on my own two feet! Thank you! Thank you!" She exclaimed, kissing everyone, filled with an emotion shared by us all.
Let's not delude ourselves. AIDS is by no means cured and to this day it continues to claim lives all over the world. However, for Dee and many others like her, the experimental treatment worked; the Protease Inhibitors, commonly known as "cocktail" has brought them longer and healthier lives.
-"Today, although there is still no cure, antiretroviral treatment enables HIV-positive people to live longer and healthier lives."
-Department of Health and Mental Hygiene commissioner, Dr. Thomas R Frieden.
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