From 2011 Personal Essay Class

During lunch time at school, on Wednesday, June 15, 2011, I was at the circulation desk of my library, having just finished checking in a book for a student. I turned around to put the book away, and through the big plate glass windows I saw about a dozen students gathered, preparing to come into the library. It was the Leadership Class (student government) with their sponsor, holding a cake and a giant home-made greeting card. I almost burst out sobbing when I realized they were coming in to surprise me with yet another party. I automatically pulled my handkerchief out to cover what I knew would be the embarrassingly uncontrollable facial expressions that took over when I felt overwhelmed these days, as my condition had progressed.

June 2011 had been a time of continuous celebration for me. My last day before retiring would be Friday June 24, after thirteen years of teaching for LAUSD, the last nine of them as the Teacher Librarian at Downtown Magnets High School. I loved the school, the job, the teachers, and the kids. To make this retirement really memorable, Mary and I signed up for all four retirement parties that were held by the various school organizations: the banquet thrown by the Los Angeles School Library Association 11 days ago, the Superintendent’s “High Tea” at USC Town and Gown (for all the retirees in the District) 7 days ago, the UTLA (teacher’s union) dinner dance at the fancy restaurant at the downtown Cathedral last Saturday, and the crowning event, the beautiful dinner party to be thrown by my school the day after tomorrow at Taix Restaurant. The first three were deeply gratifying, and the fourth turned out to be one of the most amazing outpourings of love and appreciation I have ever seen.

But this one wasn’t on the schedule. And these kids have so much energy! As I opened my breathing to surf the waves of emotion, I got my composure back enough to very authentically thank them as they presented me the beautiful card, and I read the heartfelt notes. They sang something, I can’t even remember what, and we began to cut the cake.

Why was this little party so powerful? I had been able to prepare for all the scheduled ones, but this one caught me off guard. And my body finally let go of the struggle I had been waging ever since the first signs that something was happening with my speech and swallowing, almost 3-1/2 years earlier. At first my wife and I had only noticed a slight slurring of a few words, and some difficulty drinking water without coughing, like maybe from a very mild stroke. Strangely, it took almost a year and a half to get a diagnosis

After multiple tests ruled out stroke, and everything else, in May 2009 the doctor finally said it looked like Progressive Bulbar Palsy, a Motor Neuron Disease, very closely related to, and most often a precursor, of ALS. What had been a minor annoyance had produced a sudden wrenching reality shift. I Googled Progressive Bulbar Palsy. First was the Wikipedia article and it was horrifying. I knew Wikipedia can be inaccurate, so I looked at the Merck site, next down in the search results. It told me PBP is incurable. “Death…usually occurs 1 to 3 years after the disorder begins”. This is what set me off…the initial shock.

The next few days were a time of fear and panic. I kept having images of a slow torturous death by strangulation or choking or loss of all muscles. I went to UCLA for a second opinion. The doctor confirmed the diagnosis, but he also said, “Anybody in the world who tells you they know the course your disease will take is lying. Every case is different.” I began to realize that the only thing I knew for sure was that my emotional reaction was a bigger problem than the actual symptoms I was experiencing in present time. Before the diagnosis my symptoms had been a minor annoyance. Now I was hyper alert for signs of the diagnosed syndrome, and at the slightest indication I would visualize the progression to a horrible death.

It occurred to me that this was the perfect situation to test the power of my 40 years of zen meditation and mind training. I took it as my koan to separate out the reactive emotional patterns and choose a more positive path when the trigger events came up. As Samuel Johnson said, “When a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully”, and that is powerfully true. Jon Kabat Zinn’s chapter in Full Catastrophe Living called “Responding to Stress Instead of Reacting” was especially helpful at first. My attitude improved greatly. Then as I began to pro-actively seek out alternative therapies I found healers who were much more sanguine about my prospects. The therapist at the ALS clinic at UCLA said that my condition was progressing much slower than they expected, and whatever I was doing, I should keep doing it.

In the summer of 2010, I was planning the final year before my retirement started. I scheduled a lot of classes into the library for my new Research Process lecture. On the first day of lecturing, my voice totally gave out after the second of the scheduled five class presentations. I would have to re-think my approach to this final year. The next day the principal dropped a very unsubtle hint that she was going to try to dump me, get rid of me, push me out of the school. Another shock, another battle. I had seen her do this multiple times with vulnerable teachers, who I would defend as the UTLA Chapter Chair (union shop steward). I know she was a ruthless bully, but I would not let anybody ruin the culmination of this career and my entire work life. Within a day or two of when she warned me she was coming after me, armed with the federal disability laws, my new artificial speech device, and the knowledge that she only had a week before being promoted out of the school, I slew this final dragon. The new interim principal was supportive. The whole last year became a love fest of appreciation and deep communication with so many in that school community.

All of this and more flashed through my mind as we cut and passed out the cake. By the time we were all eating I was riding the energy comfortably. I just basked in the kindness and love. But I suddenly realized there would be no record of the event, so I yelled out, “Does anybody have a camera?” Nobody did, so I took my iPhone off my hip and handed it to one of the kids, who was able to snap one picture. In the picture I have my arms around two of my favorite students. Matthew, on my left, is a gifted musician who jammed with me many times in the library, where I had a special room filled with drums and other instruments. Sweet Monica, on my right, now a courageous student leader, had been in my third grade class, nine years earlier, when I was teaching elementary. The student handed the camera back to me. I looked at the picture and I saw a life being celebrated…and it was mine. And amazingly I had survived to be alive inside this celebration rather than missing it and having it take place posthumously. But not only had I survived, I was thriving and beaming, surrounded by young representatives of future generations, caring for each other, and for me, and I for them. I would finish this part of my life on a very high note, with a lot of momentum into retirement and yet another unknown future.

In the writing class I wrote this for, a student asked about the risks of writing about real people. The instructor replied “as long as you give them the honor of their complexity. Don’t undercut them”. When she said that, I knew I had not honored that rule in the case of the upwardly mobile principal. For effect I only showed the negative side of this person. I know she has many other dimensions. I’m not changing what I wrote, because it conveys what I felt at the time. I’m adding this note because she is alive, might read this piece, and I don’t want to be unfairly taking a cheap shot that undercuts her. It’s how I felt in the moment, and I know it does not give her the honor of her complexity.