On Illness...

At the beginning of May, as a means to combat my vocational frustration, I began facilitating a support group for people living with HIV and AIDS at the GMHC. It has a been a somewhat daunting but worthwhile endeavor. Each week I meet with between 2 and 10 people, and we talk about really anything you can imagine. I am sometimes shocked (i.e. on the days we talk about sex and drugs), sometimes frustrated (i.e. on the days we talk about insurance and medications), sometimes saddened (i.e. on the days we actually talk about living with AIDS). The past few weeks we have talked alot about the effect being diagnosed with HIV has on your life. Most every person in my group can tell you the day and time of their diagnosis. They can tell you what they wore that day, what they ate before their doctor's appointment, what the weather was like, who they talked to after they received the news. About the moment when they changed from person to patient. They talk about how despite the fact they might have no symptoms, they live each day knowing that they are sick, that they have a terminal illness.

I recently had a man in my group who was very newly diagnosed with HIV. When asked how he was doing with it, he answered that he felt like he had overcome alot in his life, and that this was just one more thing that he would conquer. He had beat a brain tumor and cancer, watched a parent die of a terrible disease. This would not be his greatest challenge. The others in the group were encouraging, but anxious, let him know about many of the trials he will face. After the group, I sat and talked with him one on one. He amazed me. He is armed for battle. But he is also nervous, and anxious, and guilt-ridden. And this is sadly how it goes.

There is something to be said for being prepared for what may come. This is why we have insurance and savings accounts. But there also needs to be space to live in the moment. To appreciate time with friends when you do not have to worry about what to do next. To feel great without worrying about when this will go away, and what will come after it. To live in the now. It is a difficult task though. You have to learn to change the things you say in your head. I feel terrible must be followed by but only for a moment. You must strive to remember what how you felt before your diagnosis, because oftentimes people take better care of themselves, and are in better health in the long run, because of their illnesses. Mind over matter is an important tenet of survival.

And this is where I come in. I am there to arm you for battle. I am there to fill your head with as much knowledge as you can handle. I am there to be your guide, and your advocate. To keep you active in the fight. I leave a meeting like the one with this gentleman somewhat overwhelmed. I left that meeting in dire need of either a hug or a cigarette. "What if I told him too much?" "What if that does not work out?" "What if he is already too far gone?" But meetings like these are why I do this work. I have been sick alot, with many things on the spectrum from life-threatening to annoying, so I feel I have a good amount of perspective on being ill. For alot of reasons, with my most serious illness, I felt like I had to go through much of it alone. When I was younger, I spent alot of time being angry about the cards I had been dealt with regard to my health, and it caused me alot sadness because I had no way to really understand what it was that could come of the trauma I had suffered. I still have days when I feel like that. But then there are days when I know very well. People need someone to help them understand paperwork, to know when to fight back, to walk them through what their days may look like, to be unafraid of the illness they are carrying, to listen indefinitely to their daily struggles, to be there for them when no one else can.

I don't talk about my job alot, because it is a party killer. I say "Oh, I'm a social worker," and the conversation can no longer be frivolous. It has to be about what we doing for a cause, and how difficult is it, and many times how the importance of the other person's job cannot compare to what I do. But know, that I could not do any of your jobs either. I am bad with numbers, overwhelmed by bureaucracy and philosophy. I cannot do chemistry to save my life. I've taken four physics classes and still cannot do vectors. I don't wear the proper footwear for corporate America. I am not armed for that kind of battle.