Jane E. Babin, J.D., on being changed by disease

Living and Dying With Hope

I am the face of disease. I am the voice of disease. I am one of millions of faces and voices that need to be heard, that wants to be known. I am one of many, and yet, like others, I am unique. My story is different from theirs and yet the same. Listen to my story and see the faces, hear the voices of the many, and remember……….

My journey began in August of 2003. It had been a wonderful summer. I was off on summer break from my job as a university professor. I was enjoying time with my then 6-year-old son at our neighborhood beach on a lake in central New Hampshire. Oftentimes, my friend Dan and I would go down to the beach and sit on a large rock that protrudes out into the lake. Dan was blessed with a fantastic rhythm and blues voice and writes his own songs, to which I would add harmony. We would perform his new material to kayakers and canoeists who would stop and listen, applaud and give feedback. After 4 years of divorce, although still unattached, I was finally starting to have fun again, to enjoy life once more. Then, a simple fall when dismounting my bicycle –a very simple fall –changed the course of my life. At first just one fall, but then I experienced a second and third one. Dan, would laugh and remark on what a “klutz” I was becoming. I would laugh, too, acknowledging my lack of coordination.

It wasn’t until I was walking the short distance home from the beach a few weeks later that I realized something was wrong. I had to keep stopping. My left foot was not able to flex properly. It was now September; I was on sabbatical leave from the university and teaching an on-line graduate course from home. I called my sister, a nurse practitioner, who advised me to call my physician immediately. My sister was soon to become my greatest ally in my quest to get answers.

Although I did not know it at the time, those simple falls, the difficult walk home were to be the beginning of the end of my life. Over the course of the next few months, I went from one doctor to another, attempting to find a name for what was happening to me. In January of 2004, I was referred to a well-know clinic outside of Boston, to a neurologist who ordered a painful test consisting of sticking long needles deep into my muscles and sending an electrical pulse to measure the ability of my nerves to communicate with those muscles. Unfortunately, they were not speaking to each other.

I remember two important things about that visit to this clinic:

1. The neurologist recently had knee surgery, was in discomfort, and left to go home before my appointment was finished. He left the testing to technicians and to a physician who came in near the completion of the tests. I remember lying on the examination table, frightened, in pain, tears running down my face. The substitute doctor compassionately rubbed my arm, trying to comfort me. After the tests, she very calmly told me that she could not say definitively, but that it might be amyotrophic lateral sclerosis, ALS, Lou Gehrig’s disease. I drove home to New Hampshire with my sister, in shock, in silence.

2. The physician who went home with the aching knee called me the next morning to tell me, over the phone, that I, in fact, had ALS, and he gave me 3-5 years to live. I was alone to take this call. I remember thinking then that no one should ever have to hear the news that they are dying over the telephone.

Needless to say, I did not return to that clinic, but chose Massachusetts General Hospital’s neurology department for a second opinion. As luck, or fate, would have it, my niece, after graduating from Dartmouth College and before she left for Africa with the Peace Corps, worked as a research assistant at Mass General for a Dr. Cudkowicz, an ALS researcher and clinician. When my niece learned of my diagnosis, she spoke with Dr. Cudkowicz, who agreed to see me.

I steeled myself emotionally for another physician without personality, without feelings, without compassion. I was wrong. Although Dr. Cudkowicz confirmed the diagnosis of ALS, she prefaced it by saying three simple words, “I am sorry,” and I believe she was. I believe she is sorry every time she has to tell a patient that he or she has a terminal illness. I could see the compassion in her eyes; I could hear the concern in her voice. And it was comforting. I was soon to discover that this, unlike my other experience, was the norm.

Before I became a victim of this dreadful disease, I knew nothing about it. I was vaguely familiar with the Lou Gehrig story, but I knew no one with the disease. I did not know that it slowly paralyzes its victims. I did not know that it is a rare disease or that it strikes men more frequently than women. I did not know that it is a motor neuron disease, that it is fatal. Once diagnosed my ignorance put me on an accelerated learning curve, a roller coaster ride from which there was no escape. I would learn about ALS because I had no choice – it was about to redefine me, the person I was; the person I was about to become.

All traumatic events change people. I was now different. I had changed. I was now a person who could not look forward to a future. I was now a single mom who would not live to see her son graduate from college, advance in his career or get married. I was now a mother who would never hold her grandchildren, tuck them in or read them a bedtime story. I would never dance again, or run, or swim. I have forgotten now how it feels to walk normally. I have forgotten what it is like to be able to snap my fingers. I am changed, but not all for the worse.

I have often heard from, and read about, people suffering from serious illness who have made statements such as, “God blessed me with cancer,” or, “I am a better person, a happier more fulfilled person because of this disease.” It was shocking to me how someone could feel “blessed” by a disease, or conclude somehow that a disease had made them a better, happier person. That was before I became ill. I now understand. I feel that I have not known true compassion, have not experienced pure emotion prior to having been stricken with ALS. To say that I have met the most incredible people since my diagnosis would be an understatement. To say that I have witnessed the most profound changes in my friends, my family would be to underestimate them. Disease changes us all.

British physicist Stephen Hawking once said that he was “happier now” than before he became ill. Diagnosed with ALS in the mid-1960s, Hawking once told an interviewer, “Before, I was very bored with life. I drank a fair bit, I guess; I didn't do any work.... When one's expectations are reduced to zero, one really appreciates everything that one does have." A long-time victim of ALS, he miraculously lives, but he is changed. He is unable to move most of his body, yet he is happier. He expects nothing, yet appreciates everything.

We are changed by disease, we are all changed, not just the victims but those around them as well. People with terminal illness often fear abandonment. Will my friends and family still be there for me as the disease takes its course, as I become more debilitated? I can tell you from my experience that yes, family and friends have changed. My oldest sister and I have grown closer because of my illness. She often comes over to do laundry or to buy groceries for me. My brother in California, whom I have seen maybe ten times since I was sixteen years old, came back east with his family this summer to spend a week on the lake with my son and me. I travel to Santa Barbara next month to spend one last time with him, to say goodbye.

My relationships with my friends have grown deeper and truer. My friends have witnessed the physical changes in me. Yet, they know I’m still the same quirky person with the weird sense of humor. They don’t leave me behind or take no for an answer. I remember one evening standing outside of a local jazz spot in our town, not wanting to go in for fear I could not negotiate my way around the crowd in the restaurant. With this disease, I have no sense of balance and can fall easily. My friend, Jaylene came outside, took my arm and said, “You’re coming with me,” then proceeded to help me through the crowd to our table. My dear friend, Phil, will often pick me up, bring me to his house for dinner, and then drive me home. And we live on the same block! My friends allow me to express my fears and also my humor regarding this disease. And ALS can provide some very humorous moments! My friends are real in spite of this disease. They accept me with all my challenges. And, they will be there for me as this disease progresses. My friends are all into the arts – Bob plays pipe organ, his wife, Jaylene is a beautiful soprano. Steve is a poet and is in theatre, his friend Ginny plays flute and sings. Phil plays piano, keyboard and oboe. I often joke with them that my funeral will be more like a Broadway revue than a funeral. And I’ve no doubt that it will be.

My relationship with my healthcare providers has also evolved. Besides Dr. Cukowicz at Mass General, I also have a primary care provider, a local neurologist, a counselor, a spiritual director and others who monitor me on a regular basis. I never knew there were so many people involved in the process of a person dying! I am fortunate. They have all acted with kindness and compassion over and above my expectations.

My counselor has been my biggest supporter in my times of crisis and despair. He has helped me to realize that the stages of dying – denial, sorrow, anger, and acceptance are not mutually exclusive. I don’t go through these stages; they go through me, time and time again. He has unfailingly been there for me. He has suffered with me through the moments of anger, cried with me through the moments of pain and despair, and laughed with me through moments of absurdity. He has taught me, through example, that I am not alone with this disease. There are those who care.

They have all given me reason to hope, not for a cure, but for an opportunity to contribute, for quality of life. And hope is central to my ability to deal with dying. To quote Martin Luther King, Jr.:

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all.

And so today I still have a dream.

As my night grows darker, my hope grows brighter – I still have dreams, I still have hopes. I hope for the opportunity to love and feel love from those closest to me; I hope for moments of brilliance and creativity, to be able to meaningfully contribute to this world; I hope that I will have quiet moments with my son, to help him through the changes that mommy will experience and to help him realize that I am still the same mommy inside, even though the outside is changing. And, finally, I have hope that when my mission here on Earth is completed, that I make a peaceful transition to a place of comfort and love.

Yes, I am the face, the voice of disease. I am an advocate for those without voice. I cannot explain why I got ill, why I am dying, for it defies explanation. But I can find purpose in what remains of my life. I can make contributions that I hope will bring fulfillment and joy to me and to others. And, I can make sense of how I leave this earth, how I relate to others and how they relate to me in this important process of dying.

Lastly, I can remind the medical community that those with disease have faces, voices, families, hopes, joys, fears and a need to be treated with compassion and respect. I am not just a body with disease. I am a spirit about to fly.

This article is taken from a lecture given at Williams College in January of 2005.

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