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Readers' Forum
Positively Aware will treat
all communications (letters, faxes, e-mail, etc.) as letters
to the editor unless otherwise instructed. We reserve the
right to edit for length, style or clarity.
Write to:
Positively Aware,
1258 W. Belmont Ave.,
Chicago, IL 60657—3292
Fax: (773) 404-1040
E-mail: posaware@aol.com
Subjects:
Omission
Then and now
Original member
In for the long haul
Remembering
Who moved my cheeks?
Me, too
Complementary
Pickett Fences
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Omission
The 2001 HIV Drug Guide in
the January/February issue neglected to list the authors of
the drug guide: Associate Editor Enid Vázquez and Glen
Pietrandoni, R.Ph., of Walgreens pharmacy, with research assistance
from interns Laura Martinez and Lynette Pho. The Walgreens
staff, who work out of an HIV-specialty store in a community
HIV organization and clinic, conducted an extensive amount
of research, as did Ms. Vázquez. Positively Aware
regrets the omission and apologizes to the authors.
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Then
and now
Today I went to the TPAN
website and it wasn’t there. What happened? I was going
to respond to the 10th anniversary issue. I was among the
16 people who met with Chris Clason in the 1980s when I lived
in Chicago. I now live in the San Francisco East Bay with
my partner, David. I remember Bill Rydwels, along with Bob
Hultz, Tony, and many other AIDS visionaries. I still have
many of the old mimeographed newsletters from back then. I
sometimes re-read them to show how far we really have not
come. I was in ACTG [AIDS Clinical Trials Group] 016 (a granddaddy
AZT study) in Chicago at Northwestern University in 1984.
I took and believed in therapy for more than 16 years. All
the drugs have failed me. I’ve been off HAART [highly
active antiretroviral therapy] for more than three years now
and my T-cells are under 150 and viral load is 40,000 and
just stays about there. I’m lucky, we’re lucky.
I’d love to keep in touch with anyone who might remember
those days or me.
Jay Segal
Pleasant Hill, CA
jaysegal@hotmail.com
Editor’s Note: We were
under re-construction at www.tpan.com and are now back up
on the web. As for the original 16, we (now!) know the whereabouts
of eight of them.
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Original
member
What a flash from the
past! On my latest quarterly pilgrimage to my doctor I picked
up your tenth anniversary issue. This couldn’t be, I
said to myself and “stole” a copy for myself to
read. The editorial by Bill Rydwels and the stories about
Chris Clason brought back many, many memories.
Back then the initial members
[of Test Positive Aware Network] numbered themselves. I don’t
remember what number I was but it was in the low teens. I
was one of the original group. It seemed like every week our
numbers grew. I remember how scary it was for me when the
numbers got up to 30 and 50. When it was decided to print
the first TPA News I don’t remember, but I was there.
Chris had rented a Xerox machine and he had it installed in
the basement of the apartment building he was living in. To
this day I will never forget pushing the papers through the
Xerox, Chris editing, me checking for spelling and a couple
of others stacking and collating. That was the first issue
of TPA News. The community was so hungry for news of
any kind that it was only a matter of weeks before production
became streamlined and the publication you have now was well
on its way.
Back then there was also
a gag order on all members. What was said in the meetings
and who attended the meetings was in strict confidence. Everyone
understood the social implications of this disease. It was
not until many years later, when the Board of Directors lifted
the gag order, did I ever tell any one of my friends that
I was so much involved in TPA and being a part of the first
issue of TPA News. Now, today, as I look back on my
life it is one of my proudest moments.
We were both scared and proud
to be a part of our own cure. Chris always talked about the
positive part of this disease. The meetings always ended up
with the good-byes. They usually took the longest, were the
hardest to endure, and the most therapeutic. You never knew
who you would not see the following week.
When Bill Rydwels came to
the group many of us looked upon him as the father of us all.
I was one of the few who was fortunate enough to share in
overcoming personal trials and discrimination. Bill was always
an inspiration. I’m so glad you included him in your
anniversary issue.
God has given me so many
years of grace and excellent health. I have been so very fortunate.
I have recently retired (something my doctors told me I would
never see) and the future is full of wonderful plans for a
life of leisure with my man. Those initial years at TPAN were
hard years, but full of growth and understanding.
Bless you all for keeping
up the legacy.
James D. Harris
Berkeley, Illinois
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In
for the long haul
I have read Positively
Aware for many of your 10 years and I just wanted to let
you know that I have appreciated receiving it and have found
it most helpful. The personal reminiscences in your anniversary
issue reflect both the frustrations and hopes of those of
us who have been fighting HIV for many years—in my own
case, 15. Luckily the simple combination of Sustiva and Combivir
currently seems to be working for me. But I have struggled
with extremely high blood pressure, kidney stones, a hip replacement,
ingrown toenails, the diarrhea, fattening of some parts and
woeful thinning of others, high cholesterol and triglycerides,
chronic pancreatitis, skin problems and a host of other physical
ailments, most of which I think are related to my HIV status.
But I am also over 70 and
glad to be a longterm survivor! I have outlived three support
groups and the current one, bless it, now only meets biweekly
with three or four attendees. Sadly, so many who should care
about themselves (or others) no longer do. Perhaps some day
Positively Aware will no longer be needed. But until
then, keep up the good work.
Barc
Euless, Texas
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Remembering
I am writing to commend
Jeff on his article in the November/December issue. It brought
tears to my eyes. What I was reading was so like my own experience
with learning that I was poz and the more I read the more
I was moved by what he was saying. I thought that I was the
only person who had an experience like that when so little
was known about HIV at the time. I also was diagnosed 11 years
ago, but was not offered any counseling or information on
how to proceed with this new terrifying part of the rest of
my life. Like Jeff, all I could do was cry and cry. I dare
not tell anybody for fear of the stigma that comes with having
HIV. But thank God that I have the support of a loving family
and an excellent team of people who have the knowledge to
treat people like us. Again, my thanks to Jeff for touching
my heart so profoundly.
Michael (last name withheld)
via the internet
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Who
Moved My Cheeks?
I was on Crixivan long
enough to have suffered some degree of the facial-lypo problems
many have suffered, although I stopped it and changed to Sustiva
as soon as I figured out what was happening. I wonder if Jeff
knows about the new treatment that may soon be available which
seems to be providing exceptional results. [See "Polylactic
acid for facial filling" in News Briefs.] Test patients examined
physically and via ultrasound experienced increases of middle
skin layer thickness of up to 151% after three months, and
196% over six months. Here is a website with before and after
pictures I found: www.positivenation.co.uk/issue61_62/treatments/
treatment%202/treatment2_61_62_2.htm. Also, see www.medibolics.com/FacialWasting&Cosmetics.htm.
Anonymous
via the internet
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Me,
too
Jeff, your experience
is very much like my own. Diagnosed in ’89, I went on
combo therapy in ’97 and have been very successful with
it so far. But the only downside that I am aware of is the
destruction of a once adorable face. Living with it is better
than being dead, or worse, gravely ill. But, oh, looking in
the mirror is sometimes shocking. My body is fabulous. I’m
taking testosterone and have put on a mass of muscle, but
my face looks like someone has let the air out of it. I appreciated
reading your very well written account of your personal experiences.
Name withheld by request
via the Internet
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Complementary
I’ve just read
your January/February issue—great as usual! But under
“Resources for Complementary Therapies and HIV,”
mention was not made of the following excellent resources:
Direct AIDS Alternative Information Resources (DAAIR), www.daair.org,
and monographs by Dr. Lark Lands, Ph.D., at www.vitatime.com.
I am not aware of 3TC [Epivir] being used against hepatitis
C, but it is used against hep B. [Editor’s Note: You
are right. Thank you for pointing out the typo.] Keep
up the good work.
Name withheld
New York State
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Pickett
Fences
Where do I begin? I
guess from the beginning. Jim Pickett’s article “Slip
Sliding Away” in the January/February issue blew me away.
In all honesty, Jim, I had to put the magazine down and walk
away sayin’, “No dat bitch didn’t!” Very
profound words and how true. I appreciated your pushing the
envelope back into the faces of folk who usually just push
envelopes. I often wondered how many of us working in the
field of HIV/AIDS actually practiced what we preached, considering
that we are human beings and aren’t perfect. The experiences
and thoughts depicted in your article are those that have
run through my own mind and have been topics in conversation
with peers who are also working in the field. I must admit
that I had an almost moment for moment experience as you depicted
that you had. I wanted to write about it, to share my thoughts,
but for some reason I was feeling guilty. You’ve encouraged
me through your writing to be more honest with mine. The key
things that were pointed out were the need for continued communication
for ourselves, partner(s) and our communities. HIV/AIDS is
far from over and we do need to push for new methods of prevention.
Thanks for making me reflect on this issue, Jim! And thank
you for being man enough to put it in print.
Sanford E. Gaylord
Chicago
I was happy to see the article
by Jim Pickett. This article explored a lot of the issues
that poz men have been pondering for a long time…silently.
Now that it is out of the “closet” I believe that
it explores some of the questions a lot of us have been wondering
about for a long time in our hearts, minds, and souls. I am
so glad that someone is finally dealing with what is really
going on in this world of HIV positive living. Now that the
tides have changed, and PWAs [people with AIDS] are living
longer, there is a much more diverse and complex set of issues
that need to be addressed in the poz community. Sex or no
sex? Protected or unprotected? Tell or not tell? All these
issues deal with a host of ethical decisions and issues. I
love the new face of the magazine, and appreciated the information
found in this issue regarding medications and treatment. Keep
up the good work.
Anthony King
Chicago
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