A Few WordsA couple of Sunday and Monday nights ago I watched a four, count em', four, hour special called "A Time of AIDS" on the Discovery Channel. Not what you would call a fun two evenings, but definitely a must see. I came away from that with a lot of thoughts and feelings about our own epidemic, and they were:
1) The host talked as if the blood banks, CDC, NIH, and everyone else had been incredibly unprepared for a potential epidemic (which they certainly were) and that now they know better. Everyone reading this knows better. There is now a second epidemic. Most don't die, but that isn't really much consolation to most of us here.
2) We are waaaaaaaaay too docile. We shouldn't hurt our health, but we should state our case with much more vigor and anger. We have a lot to be angry about. And if we don't express that anger, we stand little chance of being helped. It took AIDS patients storming the NIH with smoke bombs and getting arrested before substantial funds were directed at that epidemic. Nothing will happen unless we apply the pressure. We could benefit from some obnoxiousness. This is where our cordial middle class backgrounds hurt us.
3) We spend too much time selling the best case scenario because we are scared at the prospect of spending decades being ill. In the process, we diminsh the govermental response. Cheney has had some of his patients die. I just heard that a 20 year old girl who ran a pen pal newsletter in Massachusetts is dead. Why don't we hear about these cases? We are stupid not to publicize them, no matter how scary they may be to us.
4) Because we have been so shabbily treated by the medical establishment, our self esteem is very low and we don't feel confident to ask our family and friends for help in fighting this battle. They need to be the ones raise money and do the bulk of the advocacy work. I need them desperately, but whenever I ask for help I feel kind of strange and unsure. I need to feel more confident--to realize that I've been in bed in an AIDS like state for four years--and just ask. It frustrates me and I wonder if I would be this way if I had another long term illness like MS.
© Matt Straznitskas, 1996
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