It was dark rainy early Monday morning, April 30, 1990, when Tom, my brother called me to tell me it was time. I did not want to understand what he meant, but he said Tony, my other brother was dying.
At the time, I was living in New York City on the lower west side. I remember thinking it would take me 4 hours to get to Tony. The subway to Grand Central then train to New Haven, then someone had to pick me up, or I would take a cab from New Haven to the small town of Wolcott where I grew up. Tony was living the last days of his life at our family’s home. My parents were taking care of him.
It was the kindness of Ingrid Neumann, my boss at Next Wave Productions, that got a car service to pick me up and take me all the way home. The compassionate driver who drove way over the speed limit and got me there in less than 90 minutes. I was already in a daze, that feeling of being out of the body. Tom, Joanne, my mother, and father were in Tony’s room. He was so thin and frail. I held his hand as his life was leaving him. My brother, Tony, died from complications of HIV. He was only 26 years old.
It was in 1986, and Tony was told by his boss to embalm the body quickly. Tony was so careful and always took precautions. He immediately went to the emergency room. He explained to the attending doctor that the body he had pickup only an hour before was the body he was starting to embalm. The doctor told Tony this was bad, but confidentiality would not permit him to explain why to my brother. It was several hours later after being treated that Tony called me than that day and told me everything. I tried to comfort him telling him, he is healthy and will be ok. I was wrong. Three years later, we found out differently. Tony did not fit the profile of someone who would get HIV. Then, the thought was the virus would die when the body died. The virus can not survive outside of the body, but embalming involves the removal of fluids from the body. In which a large needle is inserted into the major artery while an IV of embalming fluid floods the body. Even with the best precautions, a needle stick accident can happen.
Less than a year later, he started to get sick, but there was no known reason for him to feel ill. 1988 he lost a tremendous about of weight. He asked his doctor to do every test imaginable to find out why he felt so sick and was losing so much weight—thinking the worse that being cancer. 1989 I was working at Next Wave on the AIDS conference presentation for doctors. I felt chill as I read the symptoms for people with HIV. Most of which sounded like the symptoms Tony was experiencing. I felt horrible asking him if he was tested for HIV. Tony said he couldn’t have HIV. His doctor was not convinced Tony’s illness was HIV either administered the test anyway. The result was positive.
Tony told his employer, Alderson Funeral Home, about testing positive. The response by Alderson was shocking and horrible, who told Tony he deserved HIV for not being careful. My brother was dedicated to his craft, he was always particular about everything he did, but this was a mistake brought about from pressuring him to move quickly with the body he worked on. He also helped with the caring of Mrs. Alderson who had Alzheimer Disease.
Daniel L. Brook, MD, JD, was Tony’s doctor that treated the complications from HIV. He treated Tony with compassion and empathy. Tony volunteered for drug trials, which involve the cocktail of medications to some to ease his suffering from many diseases that occur from lack of immunity. Others probably contributed to his untimely death.
Even though it is thirty years later, I relive the days leading up to and the last moments of Tony’s life every year. I miss him and wonder what he would have been like now? I wrote HEA.VEN as short strange future-forward story dedicated to his memory and the need for VR life. Tony was kind, compassionate, empathic, honest, and he loved unconditionally.
My family and I were planning a celebration of life in memory of Tony but because of the COVID-19, we will transition the celebration to online. Surprisingly we are living through a horrible pandemic, COVID-19 has taken the lives of 228,884 people, with 3,241,495 confirmed cases globally. I think of all the people who have died. I wonder why it took so long for leaders to realize the seriousness of the coronavirus. Government leaders did not take HIV seriously until several years later. Why the repeat of this type of wait and see mindset?