When Life Changes—Living With ALS

October, 2005

by Jane E. Babin, J.D.

On April 13, 2005, Professor of Business Jane E. Babin said goodbye to the Plymouth State University campus after 16 years of teaching. The following was adapted from her speech.

11-218I remember quite well the first year I taught at Plymouth State. Just out of law school, I was an assistant professor still wet behind the ears with so much to learn about what it takes to be a successful teacher. Students often believe that the learning process is a one-way communication, flowing from professor to student. I have always told my students that although they may learn business law or employment law from me, I learn at least as much from them. After 16 years at PSU, the students have taught me a lot. But in that first year of teaching the most important thing I learned was to be able to tell a student, “I don’t know.”

How brave I was that fateful day when a student in Labor Law asked me a question and I finally felt secure enough to say, “I don’t know.” It was freeing for me in many ways. It demonstrated to my students my honesty—I wasn’t trying to snow them or make up an answer they might later find out was wrong. It took pressure off me to try to know everything. I could go into class more confident, not less, and more relaxed, better able to relate to my students. That was my first lesson as a new teacher and it has served me well now.

In January 2004, I was diagnosed with amyotrophic lateral sclerosis (ALS), commonly referred to in this country as Lou Gehrig’s disease. It is a progressive, degenerative neuro-muscular disease for which there is no cure, nor any effective treatment. It destroys the body’s motor neurons so that a cognitively healthy person is slowly trapped in an increasingly paralyzed body. The average life span for a person diagnosed with ALS is from three to five years.

This time, I had many questions with no answers. I didn’t know why I got this disease—one out of 400 men will develop ALS in their lifetimes, only one in 1,000 pre-menopausal women develop it. I felt helpless. I didn’t know how to cope with a terminal illness—to give up control to something so beyond my control; to stay hopeful, to find peace.

I didn’t know how to react to the emotions of my family, friends and colleagues. Like most people, I believed I would live a long life, retire in my sixties from the University, travel in my senior years, spend time with my grandchildren. I didn’t know how to accept the fact that none of that would happen for me. I found that I had no idea how to die.

Before her death from ovarian cancer, comedian Gilda Radner wrote, “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Sweet ambiguity.” She was right. Life is about “not knowing” and about the need to accept change. I was not going to have the perfect ending I had anticipated. I was changing, not by choice but by fate.

This disease has been by far my most difficult lesson. After the shock, the horror and the sadness of my diagnosis had passed, I discovered that although I could not change my diagnosis, I could change how I would live with such a diagnosis. I am a different person because of ALS.

The type of ALS with which I was diagnosed starts in the feet and hands. For me, my left foot demonstrated the first symptoms. Walking home from my neighborhood beach in the fall of 2003, I noticed that I couldn’t walk without having to stop. After consulting with my family doctor and a local neurologist, I was sent to a well-known clinic in Massachusetts for another opinion. During my first appointment with the neurologist at the clinic, he informed me that he had to leave due to pain he was suffering from recent knee surgery. That was okay; I could feel some compassion for him. I was handed off to another doctor and some technicians who performed tests on me that were both painful and frightening. My first inkling that I had Lou Gehrig’s disease came the next morning when this doctor who had left his appointment with me called to tell me over the phone that I have ALS, and that I had three to five years to live. I was home alone at the time. ALS was teaching me many lessons.

I returned to the University for the spring semester. The tough lessons kept coming. I found that I could not walk from my office in Hyde Hall to my car in the parking lot without stopping numerous times. My left foot could no longer flex. I began to drop things. Changes kept coming.

Like most patients who receive a critical diagnosis, I decided to seek another opinion. I went to the neurology clinic at Massachusetts General Hospital, one of the most prestigious neurology centers in the world. I expected to receive the same callous treatment I had received at the other facility. I was wrong. I met with Dr. Merit Cudkowicz, who confirmed the other physician’s diagnosis—but she did so face-to-face, with kindness and compassion. I have gotten to know Dr. Cudkowicz quite well during my many trips to Boston. A clinical neurologist, she is also a well-known ALS researcher. She and others like her are some of the true heroes in this world. They work tirelessly to try to find causes and cures for some of the deadliest diseases. She has dedicated her life to helping find the cause of and the cure for ALS.

This was one of the good lessons. At the beginning of April, I became a participant in a clinical trial on a drug they hope will slow the progression of the disease. I am no scientist, but I needed to play some part in helping to find a cure for ALS—if not in time for me, then for others in the future who will one day hear those awful words, that terrible diagnosis.

Fall semester came and I was about to learn another lesson. I could no longer manage to walk without a cane. This was a defining moment for me. How would my students react to a now visibly debilitated Professor Babin? Everyone would now realize that I was ill. The professor who used to run down the corridors in Hyde Hall now walked slowly down those halls with a cane, terrified that I might fall. I worried about my students’ reaction to my illness; another lesson yet to learn. My students demonstrated extreme kindness and compassion, often stopping by my office to see how I was doing. I would joke about my condition in class, not yet coming out in the open with my diagnosis.

I will never forget the day I fell in my classroom at the end of class after my students had left. Two students had come in for the next class and saw me struggling to get up. One young man came over and helped me off the floor. It was a tough lesson in humility for me. But his actions were so touching, so compassionate that I often think about him and the kindness he demonstrated.

By the end of the fall semester of 2004, I knew that my career at PSU was over; that it would be impossible for me to return in the spring. That was by far the toughest lesson of all. For so many years I had defined myself as professor, as teacher, that I no longer knew who I was. I was lost—alone and dying and lost.

Ivy Baker Priest, U.S. treasurer under President Eisenhower, wrote in 1958, “The world is round, and the place which may seem like the end may also be only the beginning.” I knew that I still had something to share—I still had some teaching left to do. I received an opportunity to speak at a local church. What began in one small church as a sermon about my disease and its effect on my life, mushroomed into many speaking engagements in many different venues, from medical schools to physician groups to churches, on radio, on television and in person. My career as a teacher has not ended, it has begun anew.

Dr. Cudkowicz has asked me to speak to medical students at UMass Medical School in May. Having already spoken to medical students at Dartmouth Medical School, I can tell you that these up-and-coming physicians are very interested in understanding the doctor-patient relationship from the perspective of a terminally ill patient. When it comes to lessons in compassion, we all have much to learn.

I will miss Plymouth State University. I will sorely miss all of my students, my colleagues—both in and out of the business department—who have shown compassion and understanding in my final semester and who continue to do so. I am grateful to all of my friends in the business department, to the student workers who were always happy to help me; and to all the PSU community who have shown such depth of life.

I will remember always with great fondness this place in the hills that has been such a huge part of my life. My career here at Plymouth State University has ended, but a new door has opened, a new mission has started, a new horizon looms. I thought it appropriate to leave with the words of a poet who knew Plymouth well. In the words of Robert Frost, “I have promises to keep, and miles to go before I sleep …”

On May 20, Jane Babin returned to campus again, to receive the Silas H. Pearl Medallion for Distinguished Lifetime Service at Plymouth State University’s Convocation ceremony. She can be reached at jbabin@metrocast.net.

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