If you’re looking for reading material for Pesach, look no further than Upwards, by Shami Reinman – the personal account of a woman’s battle with Parkinson’s that will give you a whole new level of appreciate for everything you have in life.
You would think that reading the personal account of a woman in her 50’s struggle with Parkinson’s disease would be down, depressing, sad. You might be right in most cases, but not so with Upwards.
Upwards is the first-person account of Shami Reinman, a vibrant and energetic woman in her 50’s – a bubby, teacher, wife and mother. She’s fun, funny and full of life – just the kind of person everyone wants as a friend. Then the unthinkable happens, and Mrs. Reinman’s world is turned upside down. As the author takes us through her journey from Diagnosis, to acceptance, to struggling with her own body – the overwhelming feeling is appreciation.
When did I last appreciate my ability to wake up in the morning and get dressed – by myself? When was the last time that I stopped and thought about the gift of being able to speak loudly and clearly, and be understood by those around me? How often to I think about the blessing of being able to drive a car, climb a flight of stairs? Did I ever feel appreciation for my ability to chew, swallow and eat? Who really takes the time to appreciate that their body is not their own worst enemy?
Reading about Shami Reinman and her struggles, reading about how she faces her challenges with optimism, it carries through to the reader. In her words:
“I accept whatever Hashem sends me, and I am grateful for every day that I have. I’ll take each day as it comes.”
-Shami Reinman, Upwards (page 276)
I bought this book last week and arrived on Thursday. Although I have dystonia which affects ny being able to read (needed to use a magnifier), I couldn’t put it down all Shabbat! As I mentioned, I have dystonia and fibromyalgia, so I could relate to trying to get a diagnosis and lviing in pain. I began having symptoms in my 40s so things rang so true. I havent finished it, as I had to put it down as I was crying so hard as I felt every pain her story.
By the way, Dystonia is related to Parkinsons in that it affects the same areas of the brain and some of the treatments are same such as DBS. I have also been getting botox injections for my facial spasms in order to keep my eyes open and for the stiffness in my neck.
Unlike the author, I grew up in a very Reform Jewish home, and my sister hasnt been close or even spoken to me in years, my only son from my first marriage is living in Israel where he is married and has given me two lovely granddaughters who I do not get to see as often as I would like. My parents are still alive, but mom has worsening dementia, and my parents are closer to my sister as she is healthier and can help more than I can. I have been married to my current husband 11years who has watched my symptoms get worse and has become my driver. Ironically, my disabilities brought me closer to my Jewish roots in looking for answers and understanding.
I would really love to have contact with Shami. Her belief in Hashem despite it all has given me more hope. I have become more religious and davening and reading Tehilim (thanks to the large print books of Tehillim and siddur by Artscroll) much more lately. Shami has really helped me see that I am on the right path.
And like you, as a nurse, I have always done research on my symptoms, too.
Shami, Baruch Hashem for having the courage to tell your story.