Family Update

In June, Dave’s play, Crossing the Threshhold into the House of Bach, was performed beautifully and to great acclaim. Each show met with a long, standing ovation. Michael Toner embodied the role so convincingly that some audience members didn’t realize he wasn’t blind until he took his curtain call.

As a writer, I hate it when people cop out with “words cannot express,” but I’m afraid I’m going to use them. Otherwise, you might be wading through a few pages of me attempting to talk about the gratitude I and many others feel for Michael Toner, Michael Hollinger (Dramaturg and Mentor), Mimi Smith (Director), John Stovicek (Sound Designer) and Jerold Forsyth (Lighting Designer.) The world is indeed a better place for containing people like these friends who devoted literally hundreds of hours to seeing Dave’s play through to such a resounding success. Let me take a moment, though, to underscore the amazing thing John Stovicek did in putting together all of the sound for Dave’s play. When it became clear that Dave didn’t have the physical ability to play the closing organ piece, John helped Dave to record the work, voice part by voice part, then put the voices together and did hours and hours of “doctoring” to make everything work up to his and Dave’s standards for what an artistic performance should be. Incredible!

As some of you know, a hit-and-run driver struck Michael Toner, the actor who so wonderfully portrayed Dave in the play, leaving him in the street where he would lay for two hours, losing half his blood, until a homeless man discovered him. Due to the severity of his injury, doctors determined they had no choice but to amputate Michael’s left leg. Ona and I visited him in Jefferson Hospital last month and found him in good spirits. Since then, he received a skin graft. Once that has stabilized, he will most likely spend time in a rehabilitation center before being transferred to the Veterans Hospital to be fitted for his prosthesis. Michael says he harbors no bitterness toward the person who hit him and left the scene, only gratitude for the man who found him and saved his life. “They told me that if I hadn’t been discovered then, and if I weren’t just around the corner from a hospital, I would have been a gonner,” he said.

During Ona’s and my visit with Michael, we talked at first about his situation and state of being. “Everyone here has been wonderful,” he said of the Jefferson staff. “They’re really on top of things and taking excellent care of me.” You could just feel the great rapport he has built with them. But soon enough, Michael wanted to know how Dave was doing. “I can’t wait to talk to him about the play,” he said. Then, somehow, talk turned to Wimbledon, then Becket and Yeats, and pretty soon you would have thought, except for the occasional medical intervention to handle an I.V. drip, that we were hanging out, having a barbecue on someone’s patio. What a loving and positive spirit Michael has, very much like my brother’s.

On Sunday, June 14, Ona and I made a public commitment of our love for each other and our intention to spend the rest of our lives together. We thoroughly enjoyed planning the ceremony and celebration, our mantra throughout being “Connection, Not Perfection.” That approach meant we never got stressed out by the planning. Granted, many things seemed to fall our way. Because we wanted to schedule our wedding on a Sunday following performances of Dave’s play, thereby making it easy for people traveling long distances to attend both events in one trip, we had a much easier time getting the venue we wanted because most people prefer to hold their weddings on a Saturday. Even though we hadn’t made provisions for a chuppah, we found a place, just days before our event, which would not only rent us one, but would deliver it, set it up, take it down, and remove it for a very reasonable price. We had hoped a friend would do the calligraphy for our katubah, but when she wrote to tell us she couldn’t do it, Ona surfed the net and found that the Museum of American Jewish History in Philadelphia had a katubah gallery from which you could buy beautifully-made katubot (the plural of katubah.) We found one that perfectly articulated what we wanted to say, along with a tactile design that I can touch and appreciate. We programmed all the recorded music for dining and dancing and loved the evenings when we sat on our front porch past midnight downloading what we didn’t already have and asking, “What song do you think should come next?” Most of all, we loved having a large room full of people who mean the world to us, witnessing this big step we were taking. Ona’s friendship with Mark, our rabbi, dates back to her late teens when she and Mark spent the summer at Naropa Institute, studying poetry with Allen Ginsberg and others. My friendship with Alina, our Lutheran pastor, began in 2004 at the Pennsylvania Governor’s School for Teaching, where I served as mentor for a team of eight students that included her. Mark and Alina worked amazingly well together, combining a sense of the sacred with a lack of pretense. Ethan, Ona’s son, and Dave flanked us under the chuppah. I’ll always feel Dave’s calm presence in my marriage, even after he’s no longer with me physically. The feel of his hand in mine during the ceremony is etched forever in my memory.

In July, our mother and stepfather, Dave, Emily, Ona and I took a road trip to the place we still refer to as The Farm, even though agribusiness has put all the small farms in my mother’s family out of commission. We all had the sense that this would likely be the last time that Dave could make the trip and see these relatives, but while that added an intensity to the journey, it didn’t negate the joy of being with everyone. In fact, it heightened our awareness of great love that permeated all conversation and connection. Making the trip work well required much forethought about logistics and accessibility. (Examples: how to make the 3.5-hour drive so that Dave wouldn’t have to use a commode, and yet without dehydrating him; figuring out what furniture needed to be moved so that a wheelchair could make tight turns in a bedroom or hallway; how best to provide food that Dave can eat; how to minimize the number of transfers Dave would need to make to get between car, house, bed, reclining chair and commode. Certainly, meeting twice with Dave’s creative and practical occupational therapist really prepared me to adequately support Dave and help him move from one place to another. The trip exhausted Dave, but he said it was well worth it.

On the heels of that excursion, Mom and Dave Dell, Ona and I took four local trains to celebrate my niece Morgan’s engagement at a party held in Brooklyn at a magnificent location with a stunning view of the Manhattan skyline. Dave’s and my sister Connie, along with the rest of Morgan’s immediate family, flew up from Nashville, so we got to have a long-delayed reunion with all of them. As you may know, Connie just received a new kidney and liver a couple of months ago. She has gone from a gaunt, sickly woman who would fall asleep in the middle of a sentence, to her former bubbly self. She is indeed a walking miracle of medical science.

On our way to Brooklyn, we learned in a phone call from Emily that Dave had had a terrible night the night before. He had been coughing a lot before the Farm trip, but things seemed to have settled in his upper chest in a way that didn’t irritate his lungs. The coughing returned in the middle of the night. Dave told us later that it felt like something had obstructed his breathing, making it impossible to inhale. “It felt like the by-pap was suffocating me, but I knew that if I took it off, it would be worse.” Both he and Emily thought it might well be the end, but Emily called Hospice, who talked her through some preliminary steps, then sent the nurse on call. “She was wonderful,” Emily said. “She stayed with us for several hours and got a doctor to allow an increase in the morphine and other medication levels Dave could receive.” These drugs quiet the anxiety attack that can accompany and exacerbate the inability to breathe, thus helping to break the cycle. All of this marks a new phase or plateau in ALS’s inexorable progress toward death. It doesn’t mean that we’re now in some kind of death watch; it simply underscores the truth about ALS, so aptly named in the title of a new book by someone who recently died of the disease: We Know How This Will End.

That said, Dave continues to make and carry out plans. He spends time with close friends and family, reads a lot (currently Hemingway’s complete short stories), and will soon meet with Michael Hollinger and Mimi Smith to give the script of his play one final review before seeking to copyright it, publish it, and make it available for rental by theatres. It isn’t fair or accurate simply to say that Dave is dying well. In the process of dying, he’s living better than many of us who supposedly have everything going for us. I’m guessing that Dave wouldn’t necessarily want to be singled out as some kind of hero. He would probably just say that he is only living out the time he has to the best of his ability. Still, he’s my hero. I hope to live as well as he does.