• 20th Anniversary Issue
• Long-Term Couples Survey
• Bravo Dr. Berger
• Return to the closet

20th Anniversary Issue

Dear Jeff,

I read the latest edition of PA—the Special 20th Anniversary Issue—and sent off an e-mail to Steve Wakefield and to Enid [Vázquez] about the feelings that the issue brought up for me. I meant to send one to you first as editor, but I wanted to say a few things to both of them first as I have stayed in contact with them since I left Chicago. Having all of the editors write a piece, including words from ones who are not with us in body any more, was a spectacular and moving tribute to TPAN and all of us who have had connections to TPAN and PA for years. Seeing names of people who I had not thought of in so long was certainly touching and thought-provoking.

You were the first person that was involved with TPAN that I had contact with…in assembling PA in the side room there on Belmont. I hadn’t thought about that huge undertaking in years. I remember taking yoga and other exercise classes there with you and Rick [Bejlovec]. It is sometimes hard to think about many of those years. I told Wakefield that I remember those days when I walked around with a cane and to church with a pillow since they had those hard wooden pews! Wakefield was the one who kicked my sorry ass to tell me to quit feeling sorry for myself and get down to TPA and volunteer. He always had a way of getting to the crux of the issue for me.

I can’t tell you how often I brag about TPAN and PA to all who will listen. I was volunteer of the year once—don’t know how that happened, but I still have that plaque on my wall. I feel like I was and am part of something that came from that meeting of some guys in 1987—five years after my diagnosis, via the MAC study blood samples drawn in ‘83. It’s amazing how all that has changed since those dark days. I never thought that I would live past any of those times, let alone past the huge doses of AZT in the middle of the night. I never thought I would get rid of that cane (I didn’t—still have them all) and never thought I would ride in the AIDS Ride in 2001, but I did. Like some of the guys who wrote in this issue, I don’t know how I got through it and how I am still alive and well. I know it has to be a mystery to all of us long-term survivors. I do know, as I know you do, that for whatever reason, we are here and should give back, to help those suffering today and many less fortunate who do not have the resources and support to even hope. I know PA offers help there, as does TPAN. Now living in a totally different part of the country, I can see how far-advanced everything that TPAN and PA provides is. The HIV/AIDS services in the South are meager at best, with the exception of a few of the big cities (Asheville, NC). I am appalled at the total lack of any services or understanding in Knoxville, TN. I do help with the one-woman show here, the Hope Center, in teaching their workshop entitled “The Human Perspective of HIV/AIDS.”

You put out such a magnificent magazine each issue, and I know that guys and women down here in the South look forward to finding one—often times it’s mine that I drop off at the Hope Center. Your words in the “Editors Note” are so well-written that sometimes they bring me to tears—usually of joy, mind you! I love seeing Enid’s News Briefs and can’t wait to read what Jim Pickett has to say.
My best regards to you and everyone at TPAN on the 20th Anniversary of PA.

Greg Knepper, Maryville, TN

Jeff Berry responds: Thank you for your wonderful letter. I was so moved that I forwarded it to the rest of the staff, as we sometimes need to be reminded of how many lives we touch by the work we all do.

As you well know, for many years when I first started working here, and when we were still a monthly publication, with the help of about 30 core volunteers we’d put together the mailing of PA at the TPAN office. One Saturday each month we’d spend about 5 or 6 hours stuffing, sealing, labeling, sorting, bundling and bagging the latest issue into about 30 huge canvas mailing bags to haul down to the main post office. We’d have donuts in the morning, and pizza for lunch. It was a lot of work, but it gave us all a sense of camaraderie and connectedness, and it was a way for the members to show their appreciation and an opportunity for them to give something back. Eventually the mailing became too large and complicated to do in-house and was farmed out to a mailing house, but it was truly a great experience. And it taught me the importance of who we serve, why we do the work we do, and the value of volunteerism. Plus it was a lot of fun! Many of those individuals are still here at TPAN, either on staff, working reception at the front desk, or attending the support groups.

Thank you for reminding me of those times, both the good and the not so good. I wouldn’t trade it for anything.

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Long-Term Couples Survey

We got a hit! [See “Long-Term Couples Survey” in January/February News Briefs.] A couple was referred to us by the Director of their non-profit who reads Positively Aware. Yea! Always a treat when we get participants who we haven’t been begging and cajoling for months.

More importantly, it got me to check out Positively Aware. What a great magazine. Very informative, intelligent, and easy to read. Congratulations on 20 years! That kind of longevity is a testament to perseverance, dedication and meaningfulness. The fact that all former editors were willing to contribute is impressive (we have more than our share of turf pissing and burned bridges in the Bay Area).

And [by the way], thanks for sharing Obama with the rest of us—what a great way to start the day—not only a new President, but a new kind of President.

Lanz Lowen and Blake Spears,
San Francisco, CA

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Bravo Dr. Berger

I hope you remember me; my name is Kurt Weston and I was a patient of yours when I lived in Chicago. I ran a support group at TPAN called SWAN (Surviving with AIDS Network). You gave many lectures to my group during the early days of the epidemic. Reading your article took me back to those challenging early days. You provided so much hope for people, extended people’s life spans and saved lives. I believe I would not have survived had I not been seeing you in Chicago before I moved to California. From your picture on the cover of Positively Aware, it appears you are doing well. I am, unfortunately, legally blind due to CMV retinitis, but I am still doing my photography. I recently received my Master of Fine Arts graduate degree from California State University, Fullerton. My photographs have been exhibited nationally. Having been diagnosed with full-blown AIDS at the age of 31, I never thought I would live to see 40, let alone live to the age of 51.

Your article made me feel so connected again. Very few people remember or know how it was in the early days of the epidemic, what a struggle it was, yet strangely unifying. You encapsulated the past 20 years authentically and accurately, thank you.

California has been a good place for me to live, but I often think about Chicago and the wonderful people there. I am so happy you are still on the front lines of the HIV/AIDS war, you are a brilliant clinician.

Check out my website at www.kurtweston.com. Keep up your amazing work, and thanks again for all that you have done, and are still doing.

Kurt Weston, via the Internet

Jeff Berry responds: Hi Kurt,

I hope you are doing well. Dr. Berger forwarded me your great letter regarding his article, and I was wondering if we could get your permission to use it in our upcoming Readers Forum of Positively Aware magazine. I don’t know if you remember me, but I have worked at TPAN for almost 17 years now, and was there when SWAN was one of the support groups. I noticed on your website that it says SWAN stands for Surviving With AIDS Network, but for some reason I remember the last word as being “Naturally” when it was first formed—is that correct?

Anyway, I enjoyed your photography on the website. Thanks, and I wish you continued success and good health.

Best,
Jeff

Dear Jeff,

Hello, thanks for your e-mail. Yes, of course you have my permission to publish my letter.

I do remember you, Jeff, and I want to thank you for all your years of commitment to TPAN and all the good work you do. SWAN did start out as “Surviving with AIDS Naturally,” but I changed “naturally” to “network” when I started including lectures about pharmaceutical therapies. When SWAN first started there was only AZT monotherapy available and many PWA’s who could not tolerate AZT were looking for herbal and other natural therapies that they could tolerate. Some of the participants were unhappy with the name change since, at that time, there was a lot of angst directed towards the pharmaceutical industry, but I didn’t want to steer people in the wrong direction by using the word “naturally” since, by that time, I did believe that pharmaceuticals were necessary.

I recall how wonderful TPA was for me when I was diagnosed with full blown AIDS in 1991. I was scared and alone. With TPA I found a community of incredible people who were maintaining a great attitude and other non-positive volunteers who wanted to help and lend support. One of the most incredible people I met was Michael Thurnherr, who was the executive director until his passing. Michael was one of the first people I met; he had just recovered from a bout of PCP, which is what I had before coming to TPA. I remember him telling me at Ann Sather Restaurant—where we used to meet after meetings—that I would “be alright, that I was going to survive.” I really took what he said to heart and I really believed that I could, that I would. People like Michael and so many others were my inspiration and hope. I don’t know what the community at TPA is like now but at that time and in that space real magic happened.

I wish you all the best and thank you again for your very important work.

Sincerely,
Kurt Weston

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Return to the closet

Thanks for the interesting read [“What’s Goin’ On?", January/February issue]. I think many of us have had similar experiences. Personally, I am finding my new career in health care satisfying at some level, but difficult nonetheless, because I am fearful of disclosing my orientation and status. It is a difficult transition, if, like me, you have led your life as more of an open book, working in more open, accepting environments. I live and work now in a more conservative area, and must say I am having difficulty dealing with the transition. Good luck in yours.

Anonymous, via the Internet

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January / February Poll results

Have you ever had to stop or switch medications due to intolerable side effects?

Comments

• Crixivan, because of kidney stones.
• Almost all of them—30 years of various medication has taken a major toll on my kidneys, my liver, and, god knows, my colon, let alone my spirit. Life with HIV/AIDS has been a lesson I never wanted.
• Diarrhea from hell and Imodium didn’t help.
• Sustiva is very strong to some people. I am a small female, and only a few pounds over the children’s dosage. My health care provider worked with me, now I am on 300 mg twice a day, and doing great.
• Too many times, each time suffering though new side effects.
• I have always followed my doctor’s advice and suffered through the side effects. There were times he did mention that if the side effects did get too terrible to take, he would change the medication. He also mentioned that it is possible the new medications may have worse side effects. I trust my doctor when he said it was best to stay on the medications I was taking, since my numbers were improving. After all, while it has been 15 years since my diagnosis, I am still here.

March / April Poll Question

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