Without Positively Aware, Who Knows Where I’d Be?, PA was only the beginning-by Steve McGuire Options

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Without Positively Aware, Who Knows Where I’d Be?

PA was only the beginning
by Steve McGuire

In 1985, when I, along with several other volunteers at the Howard Brown Clinic (as it was then named), started the first newsletter about AIDS in Chicago, none of us imagined that we would still be confronting this epidemic well into the twenty-first century. More than two decades later, however, HIV remains a mainstay of my professional life—a reality that, in retrospect, was probably determined when TPAN’s former executive director, Steve Wakefield, asked me to take on the job of editing Positively Aware in October 1993. I hemmed and hawed about giving him an answer for several weeks before deciding that this was something I needed to do.

I’d written about HIV/AIDS from time to time before that: for physicians, for patients, for policy makers, for grant makers, for general readers, but I often told myself that it was something I was doing until I could get back to my interests in public policy and nonprofit issues. In retrospect, Positively Aware turned that idea into yet another example of “the best-laid plans…”

What we did not have in 1985 are things that people with HIV largely take for granted today—a host of treatment options, the Internet, a variety of support networks, the experiences of others who have lived and prospered with HIV for years. Another thing that all too many people did not have in 1985 was a sense of hope. Happily, that also has changed, with many—maybe even most—HIV-positive folks, at least in the developed world, now able to look forward to something like a normal lifespan.

As some of my former colleagues may recall, I can’t deny that I ended my career at Positively Aware with a burden of frustration, anger, and resentment. I like to think that such emotions don’t influence my decisions so much these days. Still, probably the one constant in my professional—and maybe more in my personal life than some of my friends and family would like—has been a passion to offer up information and education that people can use to expand their knowledge, possibly improve their lives, and even share with others. Since leaving TPAN and Positively Aware in August 1996, I’ve had what looks like a rather checkered—though often interesting and even fulfilling—professional life:

• More than half of the years working as a freelancer for medical communications firms, public relations agencies, nonprofit organizations, pharmaceutical companies, software developers, and others
• A year and a half as scientific communications director at an international public relations agency—a surprisingly interesting gig
• A year or so at a medical education firm that proved to be probably the most dysfunctional place I’ve ever worked
• Finally settling into planning and managing continuing education activities for physicians, nurses, pharmacists, and other medical professionals.

Although I would not have guessed it at that time, I have little doubt that most of this work has come my way as a result of the experience and cnnections that began in my years of working in communications and development at TPAN. In fact, this seeming grab bag of a career might even have become almost inevitable after editing Positively Aware for some three years (along with serving on various related boards and committees).

Digestive disorders, cardiovascular disease, nervous system problems, infections most people have never heard of, and the list could go on—in the 1980s and 1990s, all of us involved in whatever way with the epidemic became all too familiar with HIV’s excess baggage. The unfortunate reality that people living with HIV disease have often found themselves having to deal with such a broad range of health issues gave me the familiarity and adaptability to work with a diversity of topics and audiences. In the fall of 1993, I never would have imagined that directing a community-based HIV treatment publication would have enabled me to work with such a variety of people, issues, and communications types. And that experience provided the training ground that has let me list publications and projects on my resume that range across antibiotics, gastroenterology, hepatitis, influenza, migraine, neurology, ophthalmology, and so on.

One of the long-term projects with which I have had the privilege to be involved, and am most proud of, is Chicago’s CORE Center, where I began to serve on the community advisory board while still working at TPAN and later wrote the content for COMET, the Center’s exceptionally comprehensive patient Intranet.

Positively Aware has always served as a key information source, not only for HIV patients and members of their support systems, but also for many healthcare providers themselves. Writing for such a wide readership helped prepare me for the spectrum of readers I’ve addressed throughout my career: explaining HIV and its treatment to patients; training pharmaceutical representatives about the products they promote; providing doctors, nurses, and pharmacists the data and information to do their jobs better; helping patients understand what’s going on in their own bodies and how they can work with their healthcare providers to maintain and improve their health.

It is unfortunate that so few of us from the earlier years of TPAN and Positively Aware seem to have remained in touch with each other. For good or ill, this is often what happens during a crisis—sharing an intensely personal experience that feels as if it has created a deep bond. But the passing of the years and the urgency of other concerns can strain and often break such bonds. In the case of the HIV crisis, this may be a very good thing. Highly effective, increasingly tolerable treatments became available, and many people living with HIV infection, including myself, found themselves in the unexpected situation of being able to focus on matters of career, family, and—for some of the longest survivors—even retirement.

Most of the time, I’m a calmer sort of guy now, or at least I keep telling myself that. And a couple years ago, I became something I never imagined I’d be—a suburbanite, though in probably the most urban of Chicago’s suburbs, Evanston. For those of us who have lived with and worked in HIV for many years, the one constant in our lives may be change—something I long ago decided had to be accepted and not resisted if there was to be any hope of succeeding in the endless ebb and flow of circumstances, people, and events that carry all of us along. If my words have reached any of you with whom I’ve been out of touch for some time, I’d be glad to hear from you. And for everyone—I hope the next 20 years can be as eventful as the last—minus some of the traumas, missteps, and losses.

Steve McGuire served as Editor of Positively Aware from 1993 to 1996, and is now managing editor for HIV at Clinical Care Options, LLC. He can be reached at gstevenmcguire@aol.com.