The.Bird@f38.n135.z1.fidonet.org (The "Bird") (11/12/90)
I am writing this message mostly because I am a little scared right now (I got
some poor bloodtest results back) and to caution people NOT TO TRVIALIZE THIS
DISEASE. We ARE NOT at a point medically where it can be controlled like
diabetes with daily injections of insulin or a careful diet. Yes, we are
living "longer" - 6 months longer on average according to the CDC statistics.
I consider those stats the basis for most news media to trivialize this
disease.
Aerosol Pentamidine has been the biggest life extender by controlling
reinfection of Pneumocystis Carini Pneumonia and AZT has extended many PWA's
lives by months. Most indications are that it ceases to be effective after 12
to 18 months. It is very toxic to bone marrow. DDc and DDi May be additional
help BUT WE AIN'T ANYWHERE NEAR A SOLUTION THAT WILL LET US LIVE A LONG LIFE
WITH AIDS - at least for the majority of us.
As I have mentioned before, 8 out of 10 of my original AIDS support group
have died during the last 17 months. Died of various diseases but mostly CMV
and Kaposi's Sarcoma complicated by multiple infections once their immune
systems were overwhelmed. My "phone buddy" and I are number 9 and 10. He was
much like me - having only had PCP once in 2 years. He went off AZT due to
bone marrow problems and soon after (a couple months) reported to me that he
had broken out with KS lesions all over his body. KS also attacks kidneys,
lungs, the liver and just about any other internal organ. He tried Kemron and
, of course, reported no decrease in his condition whatsoever. He flew to
Atlanta to be treated by "Dr." Alonso's Hyperthermia and we all know now that
it was a lesson in incompetantance (being kind) and mis diagnosis. As Mr.
Shilts said in "the Band Played On", Journalism has become reporting by press
release. There is no investigative reporting when it comes to AIDS and many
other diseases.
Why am I saying all of this? I am very concerned that the term of hope "Living
WITH AIDS" and "AIDS patients are LIVING LONGER" is TRVIALIZING THIS DISEASE.
I just don't consider a 6 month increase in the average lifespan of a PWA to
be too exciting - but then I am a Pwa.
Am I living Longer? they tell me so.
Am I living better? I think better than most.
Am I going to live a _long_ life with AIDS? - I doubt it.
Am I going to keep fighting? - Absolutely! even though I do not qualify for
Ddc (neuropathy) or Ddi (diabetes).
But, please people, don't get too complacent every time some researcher
releases a new astounding treatment that works in the TEST TUBE. I ain't no
test tube and neither are any of you. If it doesn't work in my complex body or
yours - it isn't worth sh*t.
a little bit frightened...."Bird"
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Uucp: ...{gatech,ames,rutgers}!ncar!asuvax!stjhmc!135!38!The."Bird"
Internet: The."Bird"@f38.n135.z1.fidonet.orgSECBH%CUNYVM.BITNET@oac.ucla.edu (11/17/90)
"Trivializing AIDS": >I am writing this message mostly >because I am a little scared right now (I got >some poor bloodtest results back) >and to caution people NOT TO TRVIALIZE THIS >DISEASE. We ARE NOT at a point medically >where it can be controlled like >diabetes with daily injections of insulin >or a careful diet. Yes, we are >living "longer" - 6 months longer >on average according to the CDC statistics. >I consider those stats the basis for >most news media to trivialize this >disease. I feel that unfortunately Bird's alarm and cautionary cry about trivializing AIDS are very much needed. I have been very disturbed myself recently by what seems to me to be unrealistic opinions about the state of the epidemic and an increasing lack of interest in it by gay men here especially. This was brought home to me full force when our volunteer team met this past Monday. A senior team member at one point began to wax enthusiastic at length about how "optimistic" the situation was. I was shocked as this person is a very levelheaded and experienced volunteer in the AIDS epidemic, and is seen as a mentor by some of the more recent members. This person spoke in very general terms about the topics which Bird mentioned, treatments and survival. Finally, I felt that we were being mesmerized by hope rather than convinced by facts and asked that we actually discuss the epidemic in terms of our experience with our clients and friends and citing what statistics and medical information we could come up with. I am sorry to say that our group of 16 couldn't come up with a more sanguine picture than Bird has presented. As we saw it "shotgun medicating" is still a necessary approach, AZT works while it works but then it is life at the bloodbank and the extended survival is actually six months. Like the man said: > Most indications are >that it (AZT) ceases to be effective after 12 >to 18 months. It is very toxic to bone >marrow. DDc and DDi May be additional >help BUT WE AIN'T ANYWHERE NEAR A SOLUTION >THAT WILL LET US LIVE A LONG LIFE >WITH AIDS - at least for the majority of us. A particularly disturbing aspect of this is what I see as a dramatic lack of interest in AIDS volunteer work on the part of gay men 25 and under. They seem to have virtually disappeared from the direct, hands-on organizations into the pageantry of activism. It is all well and good to kick the appropriate politcal butts, but there are no lack of asses that need to be wiped - literally. I do not find in speaking with guys in their early twenties who attend once-a-week activist mob meetings that they have much, if any, involvement in direct help organizations. Our local volunteer organization is going to implement a policy of putting a ceiling on taking new clients as it cannot provide services for the number who apply each month. It seems that even amongst gay men who have borne the brunt of the epidemic, AIDS has become something bloodless called an "issue" which gets once-a-week football rally type attention and a big yawn the rest of the week. Somehow hope has been tricked out as optimism and a lot of people are buying it. As for Bird, I hope things pick up for you. And, thanks. I'm sure there are a lot of people out there like myself who look forward eagerly to your postings and are pulling for you and hoping with you. (Sorry if this closing is a bit off-base, but I am an unabashed fan of the "Bird".) Jack Carroll