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Living Well

Back Among the Living

July 1998

Recently I have written about some of the issues one is faced with when returning to work from Social Security Disability. One topic that I had hoped I would not have to cover is that of health problems. Since last November I have had a bout of bacterial pneumonia and most recently, acute pancreatitis. The latter was caused by an allergic reaction to Citavine which is used as a prophylaxis for CMV. This occurs in only about two percent of patients, so call me an overachiever. I share this not to solicit sympathy, but to point out that I am working with a compromised immune system and ingest pounds of pills per month. I perhaps may have been in a blissful state of self-denial about all of this.

Strangely enough, my viral load remains undetectable, my CD4 count hovers in the mid-two hundreds and my percentage tops the high teens. I thought all of these numbers meant I was well again. Or at least I tried to convince myself of this. This last trip to the hospital reminded me (profoundly, I might add) that I have to take care of myself. Fortunately, I work in a HIV-friendly setting and I do not have to hide such illnesses. But I am aware that many of my HIV-positive sisters and brothers are not so lucky. The fear of having an opportunistic infection which might cause them to have to miss work could negatively influence their decision to try to return to the work force.

A friend of mine who has also returned to work and has had to take a few sick days himself recently said to me, Why do I think I have to be the poster boy for AIDS and prove to everyone that I can do this? This struck me profoundly because I have felt the same sense of responsibility. In my case (and I dare to say, probably in his as well) I was mostly trying to prove it to myself. I don't think that this is necessarily a bad thing though. There is power in accomplishing goals we thought were unobtainable.

Knowing what I know now and having survived both pneumonia and pancreatitis I would not change one thing ... except I would have gotten more rest and would have listened to my body more closely. This sense of denial about my immune system is something many of us who are experiencing the "Lazarus Syndrome" share. We want to return to the way things were. The temptation to try to act as if we are not living with a disease is counter-productive and can be hazardous to your health.

If one thing is certain in life, it is that the status quo will never stay the same. Life is fluid and not static. My body is not the same as it was before HIV took residence here. But it is not what it was eight years ago when I was diagnosed at death's door either.

I see more clearly now that in my quest to prove to myself that I could work full time, I almost lost sight of the real reason that I chose to do this: to resurrect the dreams that I had buried that November day in 1990 when I was told I had AIDS. These were dreams of finding meaningful work and celebrating my life each day. I am doing the former and am working on the latter.

No, there are no promises that I won't get sick again or that I will live to the ripe old age of 80. But I am beginning to refer to myself as middle-aged instead of terminal. I think this is part of the process of healing.

Interestingly, we are not told of what Lazarus did after his miracle. Perhaps we are to find our own way as well ...

This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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