Memoir: Upton Bell’s Road Back
The great Saturday sentinel was my friend Nate Greenberg, formerly of the Boston Bruins. The first time he came, he brought Kevin Paul DuPont, of the Globe. Remember the famous book Tuesdays with Morrie? I’ll always remember my Saturdays with Nate.
One of the most famous visitors came in the middle of the night. While up late—I didn’t sleep much at NewBridge even with heavy sedation—I heard a noise that became very familiar to me: the sound of someone retching in pain. As it turned out, it was Milt Schmidt, one of the greatest hockey players of all time, who’d been admitted after breaking his ribs in a fall. The next day I went down to see Milt. I was in awe that somebody who was 97 years old at the time still had all of his faculties and a bright outlook on life, despite his injuries. Milt was there for the next two or three weeks, but what I remember most was Nate going down to Milt’s room with me. Nate slipped out and called Bobby Orr in Florida, and Orr, as only he would do, flew to Boston and on a Saturday, with little fanfare, came in to see Milt.
One of the things that I was always fearful of was the onset of night—a time when you are finally alone. My nightly routine would involve a nurse removing the cage and substituting a different neck brace that would keep my neck in a certain position. This procedure was reversed each morning. The routine was very painful, and there was no way to do it other than to have me carefully roll side to side while they tried to make sure they were not jarring my spine or neck. At night this was followed by the administration of a tranquilizer and a sleeping pill. By this point, I was dreaming more than I ever had, and one particular night, two voices emerged. The first assured me that the pain would all end if I just let myself slip away—that maybe death would be easier than rehab. The other reminded me of all the football players I saw in my younger days who were in various states of distress, but always got up for the next play.
Pain can dominate one’s life to such an extent that reason no longer holds sway. Fortunately for me, on one night the desire to live overcame the desire to just let things slip away. I remember thinking that if I could just make it to daylight, I would survive for another day because I would begin my drug routine and the pain would abate. Why do I bring this up? I can understand better now how people become desperate and do things to themselves that they wouldn’t ordinarily consider doing.
As my stay at NewBridge continued, JoAnne, along with the social worker there, Gina, became breakers of the Medicare code. Medicare was the constant foe. I was walking all through the corridors to keep some sort of exercise routine. Medicare’s stance was, If he can walk and talk, he’s out. However, part of my therapy was to learn how to eat all over again. We worked on this with a therapist, Caitlin, who taught me how to chew and swallow as if I were a child. Every other week I had to pass a test of whether I could swallow food without choking. A medical truck would arrive at NewBridge, and I was lifted in a wheelchair into the truck for the test.
Months later, before I was to leave NewBridge, I had lunch with JoAnne. By that time, even though I was getting better, I had dropped almost 40 pounds and had no desire to eat. I had lost all sense of taste. While sitting in the cafeteria waiting for my frappe, I said to her, “There are a lot of things I can no longer do. If I can’t eat, taste my food, drive a car, what’s the sense in going on?” I could see that really frightened her, and I didn’t bring it up it again. If I could keep my sense of humor and try to be somewhat positive, I might be able to go home, understanding I could never again be the same.
Although I had lived in my apartment for many years, I thought of the title of the famous Thomas Wolfe novel: You Can’t Go Home Again. To a degree, he was right. In the nearly five months I was gone, JoAnne made my place look almost organized and less like an obstacle course. No longer were there books piled higher than the Hancock Tower.
My training at NewBridge—climbing 100 steps daily—came in handy since there’s no elevator in the building of my fourth-floor walkup. One slip or fall would undo everything. JoAnne, Christopher, and his girlfriend, Tracey, were there to try to ease me back into reality. A nurse would also visit every few days to check my vital signs. I have to say, after everybody left, I felt a sense of loneliness. Twenty-two different forms of medication were my only company.
The final mountain to climb was actually descending from 80 micrograms of fentanyl down to nothing. I knew that would be the worst. Was I addicted? I’m not sure, since usually my only addictions are chocolate and the Three Stooges. I found a copy of my cousin George Bell’s very moving and anguished story, written for the Globe two years earlier, about the death of his brother (and my cousin) Jamie from an overdose of fentanyl. He died alone in a hotel room in Philadelphia. The image haunted me. I decided to seek out expert advice on kicking this drug.
There were three doctors who were extremely important in my life: MGH’s Roman DeSanctis, one of the great cardiologists in the world; Nancy Akbari, my primary-care physician; and Mary Lee, a former associate provost at Tufts. I called Mary and told her I was desperate. I knew I had to deal with the fentanyl, and she made it clearer than anyone that although it was helping with my pain, I needed to get down as quickly and safely as possible. I told Mary that I could walk no more than 10 minutes before the pain made it too difficult to go farther. She advised me to continue walking, and said every time I felt I couldn’t go farther, I should sit down for 10 minutes, then get up and try again.
My first priority was to walk, walk, walk. My second priority—even though I was still suffering severe nausea—was to try to regain the 40 pounds I had lost, since my clothing no longer fit. The third priority was to stay in touch with friends, via phone and computer. I would tweet constantly and accepted any and all Facebook friends, along with all criticism on Twitter. I lived by the axiom “Love me or hate me but don’t forget me.” What I was learning is that the longer I walked, the lesser my pain and nausea became. Eventually, at the two-hour walking mark, natural opioids set in instead of the manufactured ones. The natural ones lasted about four hours, which was almost the same amount of time the drugs lasted. (Later, doctors at MGH and Tufts Medical Center clinics became very interested in my experiment.)
In the meantime, MGH enrolled me in its pain clinic, and the doctors there tried to monitor me as I came down from fentanyl. The first day, I walked into the office and saw people who were suffering in various degrees. For the first time, I thought, I’m lucky and not as bad as they are. The decision was made to drop my fentanyl dosage from 60 micrograms to 45, then to 30, 25, 15, and 12.5. Each plateau brought on its own psychological and physical dangers.
Part of the plan I developed was to walk as long as I could and sit down when I had to. My training as an athlete and my experience watching performers from every walk of life kicked in. What made athletes like Unitas, Brady, Ortiz, Bird, and Russell great was their extreme discipline and desire to always get better. I began to make mental images of goals and adhere to the Bill Belichick mantra: “Stay on message.” Visualization was also very important. I tried to never picture stopping, quitting, or giving in to anything. You’ll find that many of the greatest performers—dancers, musicians, athletes—always keep going, in both victory and defeat.
Still, my health challenges were daunting. I remember taking off my shirt and looking at myself for the first time in the mirror and seeing nothing but bones. Because of the nausea, I had no desire to eat anything. Most of the time, the nausea was worse than the pain. I survived on frappes— morning, noon, and night. Everyone at Ben & Jerry’s knew me; I was there so often, they started to give me free frappes. I told Dr. Akbari that the nurses all seemed very tall at NewBridge. She kindly told me the reason for that: I had lost 5 inches in height because of the accident.
As I was coming down from fentanyl, I saw the major reason why nobody stops taking it totally. One jolt, one misstep, and you’re going to go right back to the dose you were on. I kept setting goals, and my final two were as much physical as mental. Could I climb the famous steps at Harvard Stadium, long a tradition among people of all ages? The goal of getting to the top without falling—and understanding that I could be a whole person again—was important.
My final goal, despite not being totally off fentanyl and other drugs, was to return to one of the most beautiful places in America—Mount Auburn Cemetery—to climb its famous tower, which looks out onto the mighty Charles River and Boston. I knew it could be somewhat treacherous because the stairway is winding and dark until you reach the top, but I was determined to do it. I picked a good day to walk over to the cemetery and began my slow climb up the stairs. Every step represented a step toward ending my dependence on the drugs. When I finally got to the top, a sense of joy washed over me. I’d come a long way since that dark January night seven months earlier. I called as many friends as I could from the top and tried to thank them, for they were the reason I made it.
To this day, I continue to be treated by the MGH Pain Management Center and Tufts Craniofacial Pain Center. One of the great pieces of advice I received was from a Buddhist monk, who told me the first step in getting better is to recognize that some of your wounds and pain will never leave; the minute you understand that, you’ll be on the mental road to recovery.
So what have I learned from this whole experience? That in the end, only you can help yourself. If you don’t begin with that, no amount of medicine will cure you or help with your addiction. Also, what I found most important is friends and love. You can’t live without either one of them. After all, isn’t that what we’re all dying for?