Good Friday

At 3:00 p.m. yesterday I lay prostrate at the altar, deep in meditation and prayer, nurturing my spirit. I was nowhere near a church; I was on a massage table. The holy trinity of healing--chiropractic, acupuncture, and massage--is my corporeal salvation. Having my sore, tired muscles plied and manipulated, released of tension and lactic acid renews me and makes me thankful for all that I have--particularly my health.

After my massage I headed to Manhattan to fix Richie's computer. Richie is my best friend Andrea's husband. When I first met him, in the late 1980s, he reminded me of a sexy version of Patrick Swayze. Six foot two, strapping, a former Navy man and bouncer at Pyramid, Richie won instant approval from all of Andrea's gay friends for his bad boy image. Adding to Richie's appeal was his complete ease in a room full of gay men. Andrea always used to joke that maybe she had a gay husband. Considering that Andrea's sensibilities have been fully formed by gay men since high school, that thought seemed unsurprising but was never confirmed.

In the mid-1990s Richie took his first fall. After a few more falls, he went to the doctor, who diagnosed him with onset ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease. Richie was 33, younger than most people who develop the disease (between 40 and 70).

As more symptoms appeared and intensified, Richie quit his job at the New York Stock Exchange and went on disability. He and Andrea had separated long before the initial diagnosis, but his condition had brought them back together. As his condition worsened, Richie made plans to see the world. Accompanied by friends, he visited Europe, Asia, Australia, South America, and much of North America, before his frequent falls and spasms sidelined him permanently. Upon his return, he took an apartment in Gramercy Park and spent his waking hours at the coffee shop across the street. The regulars there looked after him, brought him back and forth, fed him, spent hours with him, took him out, became his surrogate family. One woman started writing a book about him but abandoned it.

Now, 7 years later, Richie lives in a different apartment in Gramercy Park, wheelchair bound, unable to walk, eat, write, speak, or, lately, breathe. ALS is a particularly cruel and merciless disease. "Amyotrophic" means "lack of muscle nourishment." "Lateral" refers to the part of the spinal cord where nerve cells nourish muscles. "Sclerosis" means "scarring." ALS starts in the extremities and slowly and insidiously works its way inward, systematically shutting down voluntary muscles. Life expectancy is 3 to 5 years. At first Richie's symptoms were subtle: he occasionally lost his balance and dropped things. As the disease progressed he completely lost his mobility, and spasms in his hands eventually prevented him from writing. Although he can swallow unassisted, he's started using a feeding tube as a precaution. In the past few weeks his breathing has become shallower, and he often needs a ventilator. According to his doctor, he can go on quite some time this way, trapped inside his own body. In the end he may contract an opportunistic disease, such as pneumonia, that his body can't recover from.

One Tuesday a month Andrea and Richie go to ALS support meetings to talk with other ALS sufferers and health care professionals about their prognoses and states of health and mind. Richie has outlasted almost all the other patients.

I brought Richie the William Shatner Has Been CD, knowing he'd like it. Like most ALS sufferers, Richie has all his senses intact, and his mind is as sharp as a scimitar. He's always had--and still has--a great sense of humor; it's only his body, now atrophied and a third lighter, that betrays him. It's wrenching to see someone once so handsome, vital, smart, and giving reduced to a vegetative state from which there is no return. Richie has tried many experimental treatments, but none has worked. There is no cure.

"He knows everything that's going on," Andrea said, smiling at Richie, "and sometimes he acts like a dick--right, Rich?" Richie's head flopped around in recognition, laughing. Whenever Richie was being difficult, Andrea joked with him, "Rich, I have one thing to say--Terri Schiavo." More head flopping. You could tell Richie was laughing hard, but only on the inside. To an outsider this might seem a cruel remark, but those who know Andrea and Richie would consider their ability to joke after all they've been through unremarkable.

Like the protagonist in Tuesdays with Morrie, Richie has, of necessity, developed an intricate system of communication with those around him. His live-in aide is Polish and speaks English well enough, but most of his and Richie's communication is nonverbal. On Friday nights and Saturdays Andrea gives the aide time off and takes care of Richie herself.

While troubleshooting Richie's computer, I listened as Andrea tried to figure out what Richie wanted. It sounded like an intense game of unwinnable charades. His utterances were guttural and unintelligible, his head movements random and unreliable. Because he's unable to move himself, picking him up is like lifting dead weight. That's why at this point, Andrea said, only male aides have the sheer strength to do the job.

After much questioning, it turned out Richie wanted his underwear changed. Andrea asked him a long series of "yes" or "no" questions to get him to cooperate. It took a good 45 minutes to perform the logistics of this one simple task. The frustration was evident in both their voices--Andrea's at not being able to guess and Richie's at not being able to say.

Andrea and I met at 16; we've been friends for more than 25 years. She is, and always will be, the sister I never had. I categorically admire her courage, her strength, her perseverance. Always optimistic and easygoing, she has stayed the long, seemingly interminable course--one that most people long ago would have abandoned or chosen not to take in the first place. Even though she and Richie are no longer together, Andrea is the one person Richie can always depend on. On a Good Friday, or any Friday, not many people would have sacrificed so much.

After 5 hours I had fixed most of the problems with the computer--viruses and spyware had ravaged it and the operating system kept shutting down--but the cable modem was still unable to communicate with the outside world.