“These things are so bizarre that I cannot bear to contemplate them.”
– Poincaré
Sacks takes us back to the early days of defining neurological disease when sleeping sickness (Encephalitis lethargica) abruptly washed over the world shortly after the first world war and influenza pandemic wrapped the globe around their staunch fingers. Ending a decade later in 1927, those who survived were met with post-encephalitic syndromes years later with Parkinsonism as the common tardy assailant. Parkinsonism is a term used to group neurological disorders that result in movement disabilities similar to Parkinson’s disease (PD), including traditional symptoms of loss of motor control in forms of tremor, rigidity and slowed movement. I stress the importance of not remaining satisfied with my reduced definition of Parkinsonism. This leaky umbrella-like term hides the many, many disorders grouped under this label including atypical Parkinson’s disease and ones that have yet to be identified. Sacks’ patients affected with sleeping sickness would have most likely developed a form of atypical Parkinson’s disease, which not only tends to progress faster than PD, but often does not respond well to the traditional levodopa therapy prescribed for PD.
PD and Parkinsonism were in its early, superficial days of categorization and thus when the drug L-dopa (levodopa) was naively introduced as a ‘cure’ for “Parkinsonism” in 1969, there was no hesitation in broadly adopting this treatment with all and any types of the disease. L-dopa is used to make dopamine in the body, and as dopamine is reduced within these groups of disease, L-dopa works to replace dopamine and control bradykinesia or slowness of speed. Sacks too looked at L-dopa with wide eyes and began to document the ‘awakenings’ of his patients who have been experiencing post-sleeping sickness-Parkinsonism as early as 1930. After a short 90 days of treatment, Sacks saw the quick detrimental effects of this ‘holy grail’ but could not communicate this within the Neuroscience community without his peers becoming enraged by his questioning of such a monumental ‘cure’. The weakness of L-dopa was not seen yet within general PD patients and thus his peers were ignoring his concerns of the unpredictable side effects his patients were experiencing such as becoming overly sensitive to small doses, developing motor ‘restlessness’, or having no response to L-dopa. The patients were waking up and this was enough for the irresistible excitement swarming L-dopa to continue. The pedestal L-dopa was thrown on top of was growing taller and more and more impervious until its poor consequences shot up as thick vines and tightly tangled itself around and around the therapeutic statue, eventually reaching and contaminating the simple beauty of L-dopa.
And this all comes down to how we tend to see and subsequently define complex disease. If we start off describing the disease in reductive ways then the treatments can only be reductive.
In Awakenings, Sacks intersects “biology and biography” through a strong focus on the patients’ identities. He spends time observing and listening his patients, using their words and metaphors to explain their experiences – he explores “what is was like to be human, to stay human, in the face of unimaginable adversities and threats.” It is his case histories, carefully documenting the stories of his patients, his experiences with them before, during, and after L-dopa, that define Parkinsonism. We cannot reduce Parkinsonism to a few lines on a medical record. Parkinsonism is a condition that people – bodies and identities – are experiencing, and the tangible, documented symptoms are only the tip of the deep, cloudy iceberg that we are attempting to visualize. Yet we continue to be uncharitable to disease we do not understand by focusing and treating what’s right in front of us. Sacks states we need to be co-explorers with our patients to help define, treat, and as his book focuses on, communicate complex diseases such as Parkinsonism. Along with this holistic view of disease, he emphasized that we need to work to push ourselves to see the intolerable – that the treatment of symptoms does not address the whole issue. The same drug can result in a variety of responses that are both hopeful and eventually disastrous as L-dopa has shown. Here, Sacks and his case histories pushes us to step into the world of the resilient individuals who are faced with such calamity and see them as not only a patient affected with a disease but a person struggling to adapt and survive in a world where treatments often come with poor consequences that must be balanced.
Melanie Bercovitch
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- A book review of Awakenings by Oliver Sacks, 1990 Edition - June 5, 2023
