World AIDS Day Dec 1 2009

Today is World AIDS Day 2009. Again. I will be busy handing out ribbons, and trying to help KIWAKKUKI by selling their beaded ribbons. I didn't think I would still be doing this, but I also thought that there would be a cure. When my friend Jeffrey and I met in Boston, I knew for some reason that this little Welsh man would have a profound impact on my life. I didn't know exactly why, I was a social work student at BU, and he was a chef and owner of two very successful restaurants Casa Mexico and 9 Knox Street, and also a lover of Gilbert and Sullivan.

Since I loved Gilbert and Sullivan as well, I just thought that we would run into one another from time to time while we performed, he as the patter baritone and I as one of the faithful chorus. But, it didn't turn out that way. A group of us, Johnny (Bloodie), Patty, Sam, Terry, Norman and me, pretty much spent most of our free time with Jeffrey, and gladly cooked, cleaned and were entertained by this amazingly charismatic man. In turn, he showed up for graduate school stuff, including my graduation. We were sort of the "bad seed" when it came to the Gilbert and Sullivan Players of various schools in Boston, as we never took anything seriously, especially ourselves, and that made some of the directors pretty mad at us. But, it didn't last, as we were the first to have the rush of joy when the shows went up and the lights. Jeffrey used to say..."What lights, where?" and look in wonderment around us. He used to do terrible things like drop his false teeth at us as we were trying to sing a patter chorus part, or whisper some hysterical joke in our ear as we were to be weeping on stage. But it was all in good fun.

Jeffrey was cast as Pish Tush in The Mikado, which was to play at The World's Fair in Knoxville Tennessee. What fun. I had two children, and we all planned to drive to see him. But, on opening night, he collapsed on stage. Patty had said that he seemed out of breath when she visited him during rehearsals and that he was very thin. But, no one seemed to know what was wrong. He was so sick that night that he needed oxygen back stage, and was immediately flown out of Knoxville to New York. 1982, GRID.

Jeffrey shouldn't have survived the bout of PCP, but like everything he wasn't supposed to do, he did survive. Probably his life wouldn't have ended so horribly if he had died. The next weeks and months were awful. His friends rallied around and helped to take care of him. No one knew what to do to make him better, and all the treatments he received just made things worse. Sometimes he and I would throw up together--I with morning sickness and he just because he was sick.

Finally, Jeffrey was taken out of the hospital, AMA, and flown back to his beloved England, where his mother and aunties could care for him and he could get Brompton's Cocktail, a wonderful mix of everything pain killing. He recognized his family, and lived a few weeks with his loving family before finally dying.

In one of the dramatic throw-ups, I had promised that..."Until there is a cure", I would keep trying to help others the way that Jeffrey had helped me. Never did I think that it would take so long. Jeffrey was only 39 when he died. He was an amazing man, the Very Model of a Modern Major General.

The voices who cannot speak

What about the voices who cannot speak?

I made one of those terrible internet mistakes yesterday by inviting my entire e-mail contact list, most of whom I do not know, to my personal facebook page. That was a pretty bad error since I was just trying to invite our community advisory board to our relatively new “cause” facebook page. We are having a town hall meeting tonight, and I wanted to get the word out there-yet again.

As I am reaping the repercussions of this error, I pondered the people that I know who would never receive this invitation, nor be able to answer, either positively or in the rage that a few people have. These are the people with whom I really interact. They are the orphans of KIWAKKUKI who are hoping that someone will sponsor them for school next year, the parents of the orphans who hope that someone will sponsor their child (one parent has died) for school because they have no income and cannot pay for school and also for food. They are the HIV-positive adults who try desperately to be hired by employers who are themselves struggling and cannot imagine shouldering the cost of medication for their employees that they know are wonderful, but have a regular medication bill that far outweighs what other employees have. They are the smiling faces of the hopeful who have been damaged so greatly. They are the faces of those who simply cannot divulge this secret…this terrible secret inside because to do it would risk everything that they have built, everything that they count on. Affording internet? Doubtful. They can’t even afford to get an internet virus, yet, they got the costliest virus of all, HIV.

I used to think that everyone should come to the place where they were open about their HIV. I used to listen and help people move move towards disclosure. I marveled at my dear friends who had disclosed their status and had made it through that disclosure intact. But, I have also met people who were beaten, thrown out of their house with nothing but the clothes on their backs, torn from their children, and found that their families weren’t quite as loving as they thought. So- what do you do? As a teen, do you listen to the horrible things that other teens say about people living with HIV? And then disclose that you too are HIV-infected? As a mother, do you disclose your status and then find that the school and other children and their parents have found out and are treating your child badly? As a professional, do you walk around with that silence all around you? I don’t know. Sometimes, I feel I don’t know much anymore.

As my friend Jacquie says, “One day we will look back on this disease and say-boy was that a hard time, I’m so glad it is over.” I hope it happens in my life-time.