World AIDS Day – December 1, 2013 – “And the Band Played On”

On September 11, 1993, HBO premiered the television film docudrama “And the Band Played On.”  I remember sitting in my mom’s living room, watching this movie with her and my husband, Kendall and thinking to myself “WOW, they really nailed this one!”  You see on October 18, 1990, my only son, MJ died from lung complications related to AIDS.  At the time of his death, he had just turned seven.  He contracted HIV through a blood transfusion in January 1984.  We were in a car accident and he needed surgery.  The hospital would not let me give blood because I had previously had mononucleosis and the virus stays in your system.  If it becomes active, the virus can be spread to others.  Therefore, my son had a transfusion with bank blood (It should be noted that the American Red Cross did not start testing newly donated blood for HIV until after the FDA licensed the first test to detect the antibody to HIV on  March 3, 1985).

The movie version of “And the Band Played On” was adapted from the book by Randy Shilts, which was released in 1987.  A review from Library Journal summed up the book this way.  “In one of the most important books of the year, Shilts, who has covered the AIDS crisis since 1981, sets a gripping narrative of human tragedy against a background of political and scientific controversy. His implication: the AIDS epidemic in the United States might have been averted had it not been for resistance from the government, scientists, the media, and the gay community. Shilts has the ability to draw the reader hypnotically into the personal lives of his characters. That, and his monumental investigative effort, would have made this a best-selling  novel if the contents weren’t so horribly true.”  Mr. Shilts worked for the San Francisco Chronicle and this book covers the first five years of AIDS almost day-by-day.

In 1985, President Reagan used the word ‘AIDS’ for the first time on September 17, 1985 in response to a reporters questions.  In 1990, President Reagan apologized for his neglect of the epidemic while he was president.  From 1980-1990 58, 250 people in the US ALONE, died from HIV/AIDS related causes, because the government, despite knowing as early as 1978 that gay men were starting to show signs of what would later be called AIDS.  Nothing was done to stop this until 1985.

While all of this political stuff was going on, I remember trying to deal with the doctors (who originally thought that MJ had leukemia, but finally decided to test for HIV as a “last resort” with my husband’s permission and without my knowledge).  Once we got that diagnosis it felt like “all hell broke loose.”  Since it was such a new disease and very little was known about it yet, We had to deal with all kinds of different reactions from our “friends.”  Parents wanted my son, kicked out of cub scouts, school, church, and sports activities.  I spent most of the time in full blown “mama bear” mode, but MJ at all of 5 years old just kept saying “Mommy, it’s okay, they are just scared.”  I was terrified.  There wasn’t a lot to research about HIV/AIDS and the only words that kept popping out at me were ‘THERE IS NO CURE.”  I was going to lose my baby, no matter what, and try as I might, I couldn’t make sense of it.  Now just to get him any kind of treatment was a constant battle.  I fought the doctors, the hospital, the insurance company and every politician I could get a number or address for.  I got no where.  I sent so many letters to White House, that got angrier and angrier (to a point), that I’m surprised I was never visited by the Secret Service.  LOL.

Almost all the nurses who took care of MJ looked like they were part of a Hazmat crew…Not one of drop of anything was getting on them if they could help it.  Part of me understood that (I had cleaned up his scrapes, bandaged them, and came in direct contact with his blood since he could walk), but the mom in me hated that he was being treated differently.  There was one nurse, Annette, who wore goggles and gloves and that was it.  We REALLY liked her.  At one point, one of MJ’s doctors suggested that I get myself tested for HIV, but then I refused; I was having enough of a hard time fighting for what my son needed, I didn’t need to have to that added stress (secretly, I hoped I was positive, because then I wouldn’t have to live without my son for very long).  In retrospect, I completely understand the cruel actions of so many people in our lives, including some members of my family (the only family members who didn’t change anything about they way they interacted with MJ were my mom, my brother Pete and his wife, Angie.  Their oldest daughter, Alexandra was born in 1988 and interacted with MJ almost daily).  Not much was known yet and everyone was scared.  My son handled all of this so much better than I did.  He never got mad, never showed anyone how much the rejection hurt and never said anything mean.  Every night when he said his prayers, he would ask God to forgive them and to make them less scared.  At this point, I couldn’t even pray to God because I so full of anger at Him; after everything I survived during childhood, now He was taking the one person that meant the world to me.

MJ spent the last two weeks of his life in the hospital, in an out of consciousness.  By this time he couldn’t walk and could barely talk.  I was with the entire time, except when Kendall or my brother would make me leave to get a shower and some fresh air.  At the end, I was with him along with Kendall, my mom, my brother and sister-in-law.  He was able to tell everyone that he loved them and then, with his last breath, he made me promise that I would be OK and not to hold a grudge against anyone who may have acted cruelly because they were afraid.

World Aids Day is an opportunity for people worldwide to unite in the fight against HIV.  For more information, please check out this website:  www.aids.gov  Get information and GET TESTED!!  Send a text message with your zip code to 566948 to find a testing site near you or go to http://hivtest.cdc.gov