my friend danny
by ben byer
My friend Danny died. He died on December 18, 2007.
Danny and I met in Beijing a few days after he underwent a fetal-cell injection that was supposed to stop the ALS that was destroying his body. We met in the hallway outside his room at Chaoyang Hospital, introduced by his, and eventually my, surgeon, Dr. Hongyun Huang. The first word he said to me was “ALS.” That was our common ground and he shouted it down the hallway as if we were in the same fraternity house. It didn’t bother me at all. I was happy he didn’t whisper our affliction. We approached each other like dogs on a leash, sniffing the other out for necessary information. I stood across from him, just a foot away, as he told me of the miraculous effects of the surgery he just had. How he regained the ability to walk unassisted, shower by himself, move once-dormant fingers and hope for a new shot at the life of which our shared assailant was robbing him. I listened to his deep Belgian voice as an afternoon glow poured in over our heads from his hospital room window. With his shirt off, worn-out cotton shorts, shoulder-length hair and gymnast’s body ravaged by disease, I felt like I was talking to Jesus. His conviction was otherworldly. It left no room for doubt. Danny had experienced the impossible. Significant reversals of symptoms. ALS is a progressive disease with no chance of recovery. What Danny was telling me defied everything medicine had, and still has, to offer.
Whatever reservations I may have been harboring about Dr. Huang, his $20,000 operation, Chinese hospitals, the growing controversy around his procedure, fetal cells and having my brain and spine opened up went out that sun-drenched window as I listened to Danny speak. He was the real McCoy. I have never witnessed a human being live through a moment in quite that way. It was like a great actor giving the performance of a lifetime – so real, true, honest and naked that it leaves the audience in the theatre stunned, trying to comprehend what they have just seen because moments like that are over before you know what hit you. That was Danny. The only difference is that he wasn’t an actor and this was no stage. Rather, a retired thirty-something catering supplier from the coast of Belgium who had mortgaged his home for a dream, leaning against the grimy wall of an overcrowded hospital in hot, smoggy Beijing in July 2004. Danny hated Beijing and he wasn’t afraid to say it. He hated the people, the traffic, the food, the air, the heat. He wanted to go home and it couldn’t happen soon enough. Danny hated ALS too. He didn’t see any positive outcomes from it. He hated everything about it. I wasn’t sure if this meant that he hated me too, as we only met as a result of the disease.
We spent a few days together in Beijing. One afternoon on a boat we talked for hours. Afterwards, Roko, my cameraman, and I went swimming in the river. Danny wanted to join us but was afraid his surgical wounds would get infected. However, he wasn’t a cautious man. The day after his operation, he and his girlfriend Sofie, who was with him in Beijing, climbed out of his hospital room window and went out for dinner to their favorite French restaurant. Danny smoked a pack a day of Marlboro Reds. He said he didn’t care that it would probably kill him quicker. He liked to smoke and would do it until his death, he promised. Danny believed the surgery had helped him and he didn’t want anything to obstruct his recovery from ALS back to his old life – to the way he used to be. That’s why he watched us swim while inhaling deeply from the river bank. It was all a masterful act of defiance. Danny looked deep into the face of death and laughed hard until it hurt.
The first time we met in the hospital, I asked him what he planned on doing in the future. Living with a disease with an incredibly bleak, even horrific, future makes one think about that word in a new way. Sofie, standing off to the side, said they were going to have a baby. I didn’t know what to say. It felt like a private moment that we were intruders on. As if they had talked about it a few times in private and telling me, a stranger with a camera, made it real. No turning back. Danny and Sofie were in love. They found each other under incredibly difficult circumstances. Danny and Sofie were creating something that I didn’t comprehend then. A bold, daring future in the face of destruction.
The last time I saw Danny was at a loud Brazilian restaurant a few miles from the hospital. He was complaining about the sharp noises echoing in the wide-open spaciousness of the room. At the time I didn’t understand why it bothered him so much. Now I do. Noise is an assault on my space. Sharp, loud noises drive me insane. He gave me a fork. Customized with fabricated plastic on the handle to make it easier to grip. I used it every day until I could no longer feed myself. He made it himself. He also gave me a box of Belgian chocolates. I gave him a Cubs’ hat. Then, leaning on Sofie for support, he walked away.
Though he invited me to stay with him in Belgium, particularly when the film came there, I knew we would never see each other again. We never had contact after that day. Danny never saw the film in which he plays a pivotal role. His presence is unforgettable. He is the embodiment of true hope in the face of death. A Belgian newspaper reported that Danny returned to Beijing for a second fetal-cell injection. Despite rabid criticism of Dr. Huang from all corners of medicine and patient advocates, Danny believed it was working for him.
Just after Christmas, Sofie e-mailed me through our website to tell me Danny had died. He was having pain in his back, went to the hospital, came home after a day, and died. In Beijing, he told me he would go on his own terms. That he would never end up like a plant. Sofie and Danny’s friends gathered on the beach, lit a bonfire, and shot his ashes into the air strapped to a fireworks rocket. She said he wanted to go out with a bang. Danny and Sofie did have a baby. She is two years old. Her name is Hannah.