Terry's Song

Dave Marsh writes:
(This is a story I originally told on my Sirius Radio show, Kick Out the Jams, and then wrote down at the request of Danny Alexander. It isn’t exactly what I said, but pretty close.)

At the last E Street Band rehearsal show, at the Meadowlands, I was standing behind a barricade to the left of the pit (Clarence’s side of the stage) about 30 or 40 feet out. There were a bunch of ALS patients there, all in wheelchairs.

If you don’t know that disease, it’s the worst one I’ve ever run across; if there’s worse to run across, I don’t want to know about it, ever. What happens, essentially, is that slowly, bit by bite, day by day, but really sloooowly, your nervous system shuts down. Maybe first you lose a little of your motor control or the tips of your fingers are numb or something. Eventually, it’s all gone. The trajectory is 18 months to maybe eight years. Most of the victims--and they are victims, there is no greater betrayal of life by the body—are women, although the most famous ALS victim was a man, Lou Gehrig.

I know a reasonable amount for a lay person about the contours of ALS, because when Terry Magovern’s fiancé, Joan Dancy, was diagnosed, I did an intensive five hours of research. Did it the way I usually do medical stuff, get up early and keep at it from four to nine AM. When I was done that day, I went out to the kitchen, where Barbara was having her cup of tea. She said, “Did you find much?” I said, “I printed out 75 pages.” Then I turned and dumped it all in the trash. “There’s not a word here that Joan or Terry needs to hear. Compared to ALS, there’s as much research going on for sarcoma as there is for curing AIDS.” There was nothing. The whole NIH clinical trials database (http://clinicaltrials.gov) had three studies, all being done by the same person, who I believe was Joan’s doctor at Columbia. The rest was all coping strategies, and none of them were something a newly diagnosed patient needed to know about yet.

I had to say all this to Terry at the time, and he took it like the hero he was, and Joan did, too. At her funeral, there was a lot of talk about how smoothly everything had gone, how buoyant Joan’s spirits had been (and they were), how she held everyone together (and she did). Terry asked me to stand up and talk about the horrors they had confronted. I don’t know exactly how I did it, except I’d rather have died myself than let Terry down. (As I said on the show, we were perfect for one another: I never shut up; he never talked.) I never get very nervous before I speak but being called to rain upon the parade was nerve-wracking. But it needed to be said because it was not just Joan’s beautiful life but also her horrible death that was going to move people to get something started for other ALS patients.

And so they now have the Joan Dancy and People with ALS Support Group. Terry put it together, and but he died this summer, which nobody who knew him to get over (listen to Magic track 12, believe it all and know that that’s just the outline). Sean, Terry’s wonderful son, carries on the project. He says he’d do it anyway but knows without question that Terry would haunt him if he didn’t do it and do it right. Sean brought the ALS patients I saw to the E Street rehearsal show.

All the patients I saw that night were women, adult females in, I’d guess, their late 30s to early 60s. Each of them was accompanied by a caregiver. One of them, one of the younger ones, had an oxygen tube on which she repeatedly sucked desperately.

The woman I talked about on the show was almost prone in her wheelchair, her head on a head rest, which means she had lost control of the muscles in her back and couldn’t sit up. Like an infant, right? And she had her hands crossed in her lap, perfectly straight.

Beautiful hands, long long fingers, flawless. But she could no longer move them. Lovely face, with the common elongation of features that comes as the muscle tension in the face disintegrates. When her friends talked to her, she lit up the place with her smile.

I happened to look over at her during Born to Run when the house lights were full up. She was singing along. I don’t mean just mouthing the words. She was singing. And her eyes flashed and her beautiful face smiled. And I thought, “The meaning of it all is right here. A woman who can’t walk, or even move her hands, or hold herself upright, is singing that she was born to run.”

She was my hero that night, and afterward, I went over and told her so, though she didn’t seem to know what to do with the information. I said “thanks, and she beamed that smile again, so it felt like I got two rewards--the song and that smile--and maybe she at least got one.

I don’t remember how I got out of this story on the show, because writing it down makes you think a more about what you’re saying. What I think now is that I don’t think I’ll ever get out of it, altogether.

Don’t want to either.

(Contact the Joan Dancy and People with ALS Support Group at Riverview Medical Center, Riverview Terrace Bulding, 2nd Floor, Front Street,Red Bank, New Jersey 07701 or phone 732.450.2677)