June 5, 2011 – An AIDS Survivor’s Testimony

There’s a thought-provoking op-ed essay in today’s New York Times, written by a man who’s been living with AIDS since the early days of that epidemic (Mark Trautwein, “The Death Sentence That Defined My Life”). While there are many dissimilarities between HIV-AIDS survivors and cancer survivors – most notably the horrible stigma and irrational fears that still lurk around HIV-AIDS, and which were especially intense in the early days – there are also some notable similarities.

At one point, Mark Trautwein and his partner, both infected with AIDS, actually packed up and moved to a new home closer to Mark’s family, because they were convinced both were not long for this world and they would need someone to care for them in their last days. Then, the protease inhibitor class of AIDS drugs came out, and everything changed. Suddenly, their looming deaths were pushed back from “soon” to “sometime.”

With the medications that are now available, AIDS – while still a dread disease – has become transformed from a sentence of certain death to something more akin to the “incurable but treatable” NHL that I have.

I’d be very cautious, myself, in drawing any parallels between my story and that of someone struggling to stay healthy with AIDS – especially someone like Mark, who lived through those dark years when no one even knew what this new “plague” was, nor what could be done about it, short of quarantining everyone who had it – but I did have to nod with recognition at what he says he’s learned from looking death in the eye:

“For 15 years, death had been ever present. I'd thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I'd been schooled to believe I'd never have. It was one of the hardest and most welcome things I've ever had to do.”

Even though, at the time of my diagnosis, my objective chances of survival with NHL were far, far better than those of the early AIDS patients, I still went through a major phase of asking all sorts of “what if” questions about my own death – some of them weighty and philosophical, others trivial and even silly. What if this is my last year on earth? What does it mean to “get your affairs in order”? How does one know when it’s time to do that? Is it worthwhile springing for that new crown the dentist says I need?

At mid-life, I’d scarcely begun to absorb the fact that I’m going to die someday – not so much an intellectual realization as an existentially, gut-level one. Suddenly, the thought was with me constantly. I felt like I’d been sleepwalking for years – and, like Mark, I looked around at all the healthy people and wondered how they could be so oblivious to it all. “Why waste your time watching reality shows, people?” I wanted to shout. “Don’t you know your own reality is precious, and of limited duration?” (Thankfully, I kept my mouth shut. I could have been a real downer at dinner parties.)

Aware of my own “incurable but treatable” NHL diagnosis, I was curious to read of Mark’s perspective after 30 years of living with his own:

“My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.

What I've gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.

On that day I walked from the hospital knowing I had "it," I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.

I haven't died on schedule, and I've been learning not to live life on one either.”

I don’t swallow 25 pills a day for my immune-system disorder, as Mark does for his. Nor do I have to worry about lingering social stigma. My daily road is still far easier than his. After more than 5 years of watch-and-wait monitoring – and even a recent PET scan that showed no potential lymphoma “hot spots” at all, though it’s surely still there – I’m even beginning to wonder if I’m losing the keenly introspective, philosophical edge I had back in my chemo days. Back then I felt lousy, physically, but in terms of spiritual discernment I felt like I was near the top of my game.

I hope I still love this God-given life as much as I did then. Yet, I’m also realizing how easy it could be to fall back into the poppyfields and go back to my blissful, pre-cancer slumber.

Cancer’s lessons are hard-earned. I hope I don’t lose them.