“What lies behind us & what lies ahead of us are tiny matters compared to what LIVES WITHIN us.”- Henry David Thoreau
I had the chance to watch AWAKENINGS (PG13) for the second time not long ago. I realized that my life had come full circle in the nearly 20 years, that had passed between those two times. The first time I saw this movie, which was inspired by true events that unfolded in the lives of a group of people after the great Flu Pandemic of 1918, I was a student at medical school eager to learn all about the brain. Few years later as a neurology resident, I discovered the actual book written by Dr. Oliver Sacks by the same name and could appreciate the details and intricacies described therein with greater appreciation, knowledge and understanding having treated a few Parkinson patients myself by this time. Although, this movie was great in its entirety and extremely moving the first time. The second time, the viewing experience unlocked a gamut of emotions within me ranging from pride in the human spirit to poignant realization of the limitations still present today within science and medicine despite all of the recent medical and neuroscience advances. It saddened me to think that still 60 years later, the gold standard of treatment for PD remains the same medicine discussed in the movie. Although, the advent of L-dopa has helped many a life it has not been without side effects similar to those experienced by Leonard played in an Oscar nominated performance by Robert De Niro.
For you see by now, Parkinson’s disease was no longer just a professional passion of mine but a personal journey having myself been diagnosed with PD. Watching the interplay between Leonard, a catatonic patient who “awakens” after Dr. Malcolm Sayer played by Robin Williams administers an experimental novel drug (L- dopa), I could empathize with both the patient and doctor – now having had the chance to play both in real life. I was able to feel their joy, frustration, and ethical conflict having found myself struggling with all of these as a doctor trying so very hard to make a patients life better wondering what the limit of ones own ability to push the confines of science and medicine in hopes of offering someone including my grandmother, who also had PD, just one more month of quality of life perhaps? Of course now as a patient, wondering all the while how far would one go to feel NORMAL again?
Leonard is the first of many patients to AWAKEN from a long sleep like state due to a rare disease (encephalitis lethargica) caused by the flu. After nearly 20 years, Leonard becomes normal again by this miraculous drug. However, like all drugs there is a down side to taking them and the side effects soon take over the life of this patient causing severe dyskenesias. Soon Dr. Sayer along with the staff of the facility in which these patients are housed have to confront the issue of cost in maintaining these patients on the medication. We as audience are drawn in and forced to think along with Dr. Sayer, at what price do we pay for QUALITY OF LIFE? And WHO IS TO DECIDE WHAT QUALITY MEANS TO EACH INDIVIDUAL? This issue still rings true today…in the time of Obama care…where there may not be enough neurologist/Parkinson specialist to care for such patients what do we do?
As the story unfolds you see an initially shy doctor with very little zest for life begin to blossom and becomes a tower of strength when fighting for the livelihood of his patients. He in essence becomes the champion of life and all that is good in it. He gives voice to the individuality of the human spirit and recognizes its merit even if short lived, as he desperately struggles to save each patient as they one by one slowly slip back into a deep sleep. In the end, he finally gets what life is all about, just as I have realized what is truly precious after witnessing countless lives ravaged by this horrible illness called Parkinson’s.
All of us who have ever played a caretaker role have struggled with these very issues. We have perhaps shared in the joy of seeing loved ones improve from chronic illness like Parkinson’s and Alzheimer’s only to watch them slowly wither away in the end. To what ends do we go to get medicine and provide care for our loved ones who we know have devastating, incurable illnesses? How much freedom do we allow them especially when we know full well they are not capable of taking care of themselves? What are the alternatives? How about for those of us with similar conditions, are we prepared to take the good with the bad? Would we be ready to go gently into the night or will we fight with all our might to our last breath to preserve our dignity, humanity, and individuality? These are the questions we must all ask ourselves.
For these reasons, I think that Awakenings is a MUST see movie because it touches on all of our humanity, our frailties as well as the strengths of the human spirit. Especially, if you or a loved one have recently been diagnosed with Parkinson’s disease isa good introduction and sage way for discussion….can be done at home or at support groups. However, this must not be done without a whole box of tissues near by.
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org