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A Painful Lesson at Home
 Back in June my 80 year old mother called to let me know that my younger brother was in the Palm Springs hospital with pneumonia as a result of an on-going bronchitis he had since the beginning of the year.  I talked to my brother in the hospital and though we were not as close as when we were young, he did say he was concerned that they were not treating his condition correctly despite changing his antibiotics and other meds.  He also said to my mother he did not want to die or die in a hospital.
After feeling he wasn’t getting the proper course of treatment, he insisted that the hospital transfer him to a respiratory specialized hospital.  His partner, Brett, was not forthcoming with much information and did not keep us in the loop.  But that is a different conversation.  I later received a call that he had been transferred to San Diego where he felt he could get proper care. My mother called me to let me know his condition was getting worse and she wanted to stay with him at the hospital.  I picked up my mother and drove her to San Diego.  By the time we arrived they had put him in a medically induced coma and on a respirator. After nearly four weeks in two hospitals, he died on June 28, 2011.  His partner ended all communication with us and we never had final closure to my brothers death.

Fast forward to December when we had to specifically request a copy of the death certificate for my brother despite my mother being next of kin, his partner got the certificate within days. My mother received the certificate in

From the Desk of the Executive Director

the mail, with English not her strong suit, she couldn’t decipher the cause of death.  So I had her spell it to me over the phone.  Within the first few letters spelled out I was in absolute shock.  In a nutshell, my younger brother died of opportunistic infections as a result of HIV!


How is that possible?  My younger brother was HIV+?  But he was not on any medications and he was being treated since the beginning of the years with antibiotics and asthma medications. He also never mentioned to anyone nor did anyone at the hospital say that he had HIV.


Obviously this was a shock to my mother who was still mourning and to myself as an advocate for HIV causes and the work of the Foundation. Moreover, my brother knew how much I was involved in the work of HIV. He also knew that I was the sole remaining survivor of all my friends from the first wave of HIV/AIDS infections from the early 80’s.  It pains me to watch my mother in a silent cry and to have watched the loss of her third child.  A pain unimaginable that any mother should go through.

Unfortunately, this left many more questions for me and my mother than it did answers.  How did my younger brother not know his status? When did he become infected?  Why was he not on any treatment regimen? Was it possible he naively not think he was at risk for HIV?


These answers will never be known. This as painful as it is for both my mother and I makes the work we do much harder. I shared this with my Board recently.  They were very concerned and really wanted to know how or who caused the HIV infection. Though I share their concerns, it shows that more work still needs to be done.


My younger brother was just a few days shy of reaching his 49th birthday.  I had fully expected my passing long before his.  For I had become HIV+ during the first years when we knew nothing about the virus, the mode of transmission, the life expectancy. In those days, death was certain.  It was just a matter of how long you could outrun your death clock.  Of the hundreds of friend gone from that period, I now have to add one more.  My brother...from a generation that should have known better.


 

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“In those days, death was certain. It was just a matter of how long you could outrun your death clock. Of the hundreds of friend gone from that period, I now have to add one more...”