Alice Lazzarini, Ph.D., has been in the news a lot recently (click! click!) and I briefly blogged about her before (click!). She is a research scientist who helped prove that in some cases Parkinson’s disease is genetic. After a rich and varied career in the sciences and medicine, she developed Parkinson’s herself. You can read her entire fascinating story in her book, Both Sides Now.
I always meant to review the book, so here goes.
Both Sides Now follows Alice’s personal life and professional career from her childhood up to the present. What I found fascinating, refreshing and honest, was how she met certain obstacles (some people would say failures) but bounced back and continued forward in a slightly different direction. For example, she dropped out of the first college she went to (Marietta) when she felt lost and performed poorly in chemistry, her major. So she switched to a junior college and moved on from there.
Similarly, she had to drop out of the first graduate program she attended (St. John’s University), but later earned her master’s and doctorate elsewhere. Her Ph.D. in Cell and Developmental Biology was granted jointly by Rutgers and the University of Medicine and Dentistry of New Jersey.
Forging ahead seems to be one of her primary character traits.
Her professional career and, I’d say, her personal life also followed a twisting, bifurcating path. But in the end her research contributed two key ideas to the world’s understanding of Parkinson’s disease: First, that in some cases it is genetically determined. Second (if I correctly comprehend it myself), that the disease is tied to mutations in the gene that encodes alpha-synuclein, the protein you often see mentioned in articles discussing Parkinson’s. (E.g., bingo!)
Alice’s book delves with precision and verve into science, medicine, her career, and her personal life, all of which make it a well-rounded read. However, one early passage chilled me and lurked around my subconscious while I continued to read about her illustrious and rather fabulous life. The passage appears on page 27, way before she relates her experiences as a high school and college student. She writes this passage from her perspective of someone who already has PD.
Here it is:
Chapter IV: Awakenings
Daybreak coaxes me awake. Once upon a time – before Parkinson’s forced me to stop working – my first conscious thought was whether or not it was a workday and, if so, what I needed to do to prepare. Only on weekends could I relax, knowing that my time was my own: to food shop, straighten up the house, run to the cleaners, the bank, and perhaps the hardware store.
Now when I wake, I am acutely aware that my time is always my own. I can plan every day at whatever pace is comfortable – crowding in many errands or relaxing with a book. But, I realize my right arm is shaking and I am not intentionally moving it. Then a new dawning, a different kind of awakening – a realization that the movements are a time bomb that is ticking away as my brain cells die. My time is my own now only until that bomb goes off, until I can no longer play with my grandchildren or drive to my nephew’s karate tournaments, until I can no longer move, no longer take care of myself. That is Parkinson’s disease. Ten, twenty, one hundred times a day when my hand begins to shake uncontrollably, that reality dawns again.
For me, this red-flag passage colored the rest of my reading of her compelling book. And just now, as I typed the two paragraphs on my computer, I realized that I am very lucky today, because I am touch typing with both hands. As I typed her paragraphs, I looked 100% at Alice’s book (not at the keyboard, not at the computer screen), much as I did in my high school typing class back in 1970. I thank Sinemet and my almost daily physical exercise routines for allowing me to live 90% of the time as if I didn’t have PD at all. But tick-tick-ticking in the back of my mind – and, I suppose, my brain – is the time bomb Alice mentioned.
In a way, everyone with Parkinson’s is leading a “both sides now” existence. We know what life was like – how relatively easy and carefree it was – before our diagnosis. (Note: I realize that some people had tough lives even before Mr. Parkinson came along. For example, read some of the Perky Parkie’s blog posts.) And we know what it’s like now as we live day-to-day with the disease. Some days, at least some moments, may feel similar to our pre-diagnosis life, but at other times Mr. Parkinson punches us in the jaw, metaphorically speaking, and we fall down, either literally or figuratively.
When I think about it now, I realize that Alice’s book is much richer because she prefaces her life story with this “I’m relating my narrative through my current lens of living with PD” perspective. Which makes the book not only informative and marvelous but, at least for me, a literary treat.
You can follow Alice on her own website: bingo!
