Liz's Medical School Journey

This week I learned that a college classmate was recently diagnosed with ALS or Lou Gehrig’s disease. I was shocked because he is only 30. I never knew ALS could affect people my age, but apparently he has a genetically-linked variant that has something to do with a mutated superoxide dismutase 1 enzyme. The human body is so complex, there are endless possibilities for disease, but the rare variations never cease to jolt me.

Along with the initial shock, I thought “Why Tim?” He is such a lovable and wonderful person– a musician who plays in a band. At least two close friends of mine (and probably more like half the girls on campus) had HUGE crushes on him. Now he’s newly married to a wonderful woman who is committed to staying with him throughout his illness. I didn’t know him too deeply myself, but he stood out in many positive ways. He even has a tattoo from a Quaker song book. I would never have imagined that he would be struggling with a degenerative illness so soon.

While I was in the Dominican Republic last summer (and actually had time for personal reading) I read Tuesdays With Morrie.  This is a poignant book written about a Brandeis professor who is dying from ALS. I highly recommend it. I learned that one of the doctors who was volunteering with me had a father who died from ALS too. His dad was diagnosed with ALS right before he took his Step 1 Board exam in medical school (awful timing for a future doctor).

I learned about ALS in my neurology class this fall- I learned the medical facts, that is. It sounded like one of the worst neurological diseases, not simply because it is currently a death sentence. Mainly it is terrible because a person’s body changes without the mind. In other words, ALS (like Huntington’s Disease, “Locked-In” Syndrome, or spinal injury) causes loss of body function while the mind stays completely intact.

Of course, exceptional people who are surrounded by love have an amazing capacity to cope with mental and physical suffering that disease brings. The dry facts about any disease can’t come near to the more complete knowledge of a person with the disease. They can’t begin to explain how people feel or cope.

One of my greatest life lessons of the past 10 years has been accepting mortality and tragedy.  Understanding the reality of so many bad things that can happen at any moment makes me feel scared and vulnerable.  Yet, it helps me to challenge myself, and avoid making many decisions based on unrecognized fear.  Perhaps one of the greatest lessons in medicine is not only accepting the diseases, but actually knowing the people who have them too. This next life lesson is why I am so excited about beginning my clinical rotations this Wednesday.

After this week ALS will not be just “ALS” anymore. ALS will be Tim’s disease. I won’t forget it because I can see him alongside his wife. If I see anybody with unexplained neurological weakness, ALS will be whispering in my ear and begging to see a neurologist. Thanks to Tim’s friends and modern technology, I’ll remember his experience on video, and most importantly, his story will live with me forever.

Summer has begun, and I just returned from one of the best vacations of my life- an 18-day trip with my husband to Europe to visit my Italian family and sight-see.  I’m not sure if the trip felt so amazing simply because I have greater appreciation after working so hard, or whether it was truly just a fantastic trip.  Nevertheless I feel extremely grateful for the wonderful memories and time to travel.  Yet as I was having a great time, something striking happened back home- a deeply loved member from my Quaker Meeting died.

Thanks to modern technology, I learned of his death within three hours.  Although he was younger than my own father with two children in their early 20′s and a devoted wife, his death was not a surprise to me.  The shock began in January when he suddenly began to feel forgetful.  Worried about early-onset alzeimer’s disease, he went to his doctor immediately.  After an MRI and biopsy he was diagnosed with glioblastoma, a cancer of the glial cells that was located between the two hemispheres in his brain.

I knew glioblastoma because it was responsible for the death of two of my grandfather’s sisters- including my Aunt Dot’s death last year.  She was diagnosed in May, and she died the first week of December.  She was in her 80′s, but it was nevertheless a great shock to her children and husband, who were still depending on her for a lot of care and help with grandchildren.  The family sent updates often, and therefore I felt included as Aunt Dot quickly became consumed by the cancer.

Like my Aunt Dot, Bill was deeply loved.  He was such a talented person who had a true gift with relationships and words.  I can still hear his gentle, but powerful voice, and his laugh.  Logically, I knew what glioblastoma meant when I heard of the diagnosis- it is a death sentence.  Yet, I also knew intuitively that nobody should give up hope completely.  Being a medical student means I have access to a library of medical journals and books worth thousands of dollars, so I decided to use some of my resources to learn more about this cancer.  To my horror, the statistics were more grim than I thought.  To date not a single person with the advanced stage of glioblastoma has lived over 2 years.  The only therapy- chemo treatments and radiation- could prolong life an average of a few months.  As I read those words, I sat mortified as my hope for Bill diminished.

The shock hit me then, and over the past six months it has come and gone.  During a lecture on “Death and Dying” I thought of Bill and his family.  At Meeting, the children asked, “Is Bill dying?”  And in our community we realized that everybody is dying.  Bill and his family ever-so-gracefully were showing us the tragic truth that life will end, and nobody can control their death.  Medicine acts like it can save people, but it usually cannot.  We often tell ourselves that death will come tomorrow, but it could come today.   And as I mourn for Bill and rejoice in his life, I feel humbled.

I am preparing to leave for my volunteer service in the Dominican Republic, and one question that has been on my mind is whether we can truly help those people with severe or chronic medical problems in our rustic general-medicine clinic.  I realize, however, that my rural village has probably lost many people like Bill.  Since they are a small close-knit community, no doubt they have already accepted the truth about death.  In a community that rarely gets any medical attention, people have probably learned to cope with unexpected and inexplicable death and suffering much better than the average American.  This is something that I’m still learning- something that Bill, my cadaver, and others have helped me see- that sometime we must suffer, and sometime we will die, and there is nothing anybody can do to prevent it.