Thomas DeLorenzo: The Cured "Berlin Patient" -- Man or Superman? By Thomas DeLorenzo
May 22, 2012
Sometime in the beginning of the year, I was consumed by a legal writing project. It was only fifteen pages but was going to be 80 percent of my grade. The sweats it brought on had not occurred on my body since my T cells were under 100. I couldn't sleep. I could, however, eat -- and eat and eat. In the middle of this hell, I learned about a conference to be held at the Eisenhower Medical Center in Rancho Mirage, California. The conference was called Hope For the Future ... Working Towards a Cure and was being sponsored by Walgreens Pharmacy. More important -- the special guest of the conference was going to be Timothy Brown, otherwise known as the Berlin Patient.
It made absolutely no sense to go -- I mean the paper was due four days later. But I knew that if I missed this moment to meet the man that gave us all hope, I would be far worse off than if I received the lowest grade in the class. I had to meet him. The Man. I mean, imagine The Man that beat the disease! It was confirmed, I would go, madness and deadlines aside.
I sent off my email to Frank Mallalieu of the HIV Provider Network and Josie Diaz of Walgreens Palm Springs. All I had to do next was pick out my selection for lunch.
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Melinda Winner and her inspiring story about overcoming RA. I worked until 9:00 p.m. the night before in the law library, on that very paper, and went home to sleep, anxious with anticipation over the conference. Oh did I mention the law library and home were just over 120 miles to the east of the conference, the conference that started at 7:30 a.m. Oh, and yes, Berlin Patient was going up first.
I got home, completely fried from too many rewrites on my paper, and collapsed. I set the alarm for 4:30 a.m. and somehow managed to actually hear it go off and make it out the door by 5:30 a.m., driving nearly 80 mph, and get to the conference in time. The wonders of espresso will never cease to amaze me.
It was then I saw him for the first time. I really didn't know what he looked like before this. Every time they said "The Berlin Patient" previously, I saw an IV drip next to the Brandenburg Gate.
But the program had his picture in it. And then I saw him in the front row. And he wasn't wearing a cape. No tights. No letter emblazoned across his chest. He was not the Superman I had envisioned, this completely built, rock solid hunk that the virus could not defeat. I mean, if this super deadly virus was put in its place, it had to be fought with nothing less than a super man, right?
I could not have been more wrong.
What I met, what was there before me, in all his honesty, was a man that looked like the common cold could have done him in.
I must have had it wrong, right? I mean, maybe they put in someone else's picture in his slot?
He got up to speak. It was clear he had never worked with a media coach. His voice cracked; his presentation was not polished. Yet in spite of these facts, his details pulled me in. He spoke of how he almost didn't go through with the second treatment, the treatment that would make him famous. He was very aware the odds of survival would go down with each session, but odds were not in his favor already. The lymphoma was winning the battle. He spoke of how he didn't want to be attached to the story, but how he would eventually realize how much power putting his face to the rest of the details would make the story. He had to step out in front of the news, and use his new-found fame for the good of others.
My first thought was simply, how could he not have done it? I mean he knew he was going to make history, right? He had to know the importance of the moment. I finally realized, how could he have possibly known? It was then I finally got rid of that super hero costume in my head.
It wasn't until the drive home that I realized, in spite of his elevated status, he was just one of us. He was another guy with AIDS that happened to have a story with a different ending. What made him different from us here in America was the fact that the German health care system was willing to go to bat for one person, fully aware of the fact that this time, energy and money could have gone for naught. Funny, I don't recall Anthem Blue Cross stepping up to the plate when nearly 4,000 Americans are on the waiting list for the drugs that could also save their lives. I don't hear Congress running around with any lobbyists, fighting for a cure to end the very suffering HIV still causes to this day in our own country. I don't read about Pfizer willing to risk it all by funding cure research that could put them, and other companies just like them, out of an incredibly lucrative market. Oh, no, we have shareholder value to consider first, of course, in these great United States.
Back to Berlin. By realizing that Tim Brown wasn't going to come flying in on a cape, I realized that the Berlin Patient lives in all of us. It is in the very quiet moments, the moments when we tell our doctors that no, we don't want to try another drug for fear of what it will do to our bodies, but yet we somehow find the strength to give it a chance. Those moments, when we find the courage to tell our co-workers about our status, and know we risk being put on the unemployment line. Those moments, when we realize we are the only ones left alive from the '80s, and wonder if those years were all one big popper-induced haze after all.
Those moments. Those very moments we don't like to talk about. It is in those moments when we find our boldest self. It's these very moments that they don't write books or movies about, but it is those very moments that keep us all going.
I know that each and every one of you who read these very words had those moments, HIV poz or not. For it is within these very moments, our own inner Berlin Patient comes out, and I applaud you. I applaud you with the loudest noise my hands can possibly make. I applaud a man in Washington State who is having kidney problems but still gets up the nerve to face the world. I applaud a man in Maryland who is learning to cope with his HIV status. I applaud the nursing students at the University of South Florida, who know exactly how far an ounce of good care can go in that pound of cure. I applaud individuals like Dr. Paula Cannon of USC Keck School of Medicine for her unwavering dedication to discovering a cure that would save us all.
We may not have the health system the Germans have, but we have gotten here, and we are still alive. We have, clearly, come too far to turn it in and call it quits.
I beseech you, find that inner Berlin Patient, and nurture him each and every day. Keep him there on your shoulder, for those times you need that cheerleader to keep you going. And remember to thank a man, a simple man, named Timothy Brown, for leading us home.
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