By Florencia Cerruti, person with Parkinson’s Disease and author of Rebirth at 50: in the end, it was not The End.
I can only say that I couldn’t agree more with every word of Gary’s article on the role of shock and developmental trauma in Parkinson’s Disease. My pre-diagnosis personality, at 47, matched Gary's description exactly. In my case the shock was followed by five years of not feeling able to talk openly about the diagnosis, during which time my major therapy was writing. I finally decided, or was convinced, to publish the pages I wrote during those first years. My surprise was enormous when I began to receive the comments of my readers: "I am just like you: controller, perfectionist, provider". I was also struck by the number of readers who told me that they had had a traumatic episode in the years before the diagnosis. So had I.
It is now known that the illness begins much earlier than diagnosis, I interpret this to mean that the shock trauma triggered the illness to the level that symptoms became obvious, although these had actually begun much earlier. In my book, I also talk about evolution, growth, finding a purpose, and about the pleasure and relief of freeing myself from the heavy superwoman cape that I used to wear.
I also absolutely agree with every word in Gary´s suggested approach to caregiving for people with PD. When I began to share my writings from the first five years post diagnosis of PD, a psychologist who read those first pages told me it was not common to find this kind of insight coming from the insider, and asked me to write something for “the others” - those with a friend, relative or co-worker with PD.
There are lot of overlaps in what I wrote with Gary´s ideas. First, the need to “see past the disease”. I wrote:
“I wanted to get people to see Parkinson´s through me and not me through Parkinson´s. I didn´t want – then or now – the disease to define me.”
Gary says “not many people understand how much stress affects us: for me, stress is the real killer.” I say that stress is as Kryptonite for superman:
“Remember that intense emotions are to the person with Parkinson's what Kryptonite is to Superman... They weaken them, they hurt them; they exacerbate their symptoms... So don't insist if he/she doesn’t want to attend a heartbreaking funeral or a trial hearing, or get involved in a difficult or painful argument. It does him/her a lot of harm.”
Applauding, celebrating little victories, rewarding, encouraging, taking into account how hard it is to admit that one can no longer cope like before, and many other tips mentioned in Gary´s article are also included in what I independently wrote too.
I emphasize in my writing those attitudes or gestures that I appreciated or that would have been good for me, and that I have a feeling would work most times. I was surprised on how much I found to share with “the others”, and I organized those ideas into these themes:
unconditional love, pampering and encouragement;
be really willing to listen;
be explicit with words and deeds;
get informed to accompany, to offer resources, to understand our decisions;
show us a way to get the shame out of the way;
do not overprotect, do not press, be inclusive, and… arm yourself with patience;
put yourself in our shoes to avoid unhelpful comments or attitudes;
help us not isolate ourselves;
There is so much “the others” can do not to make more difficult what it is already so difficult.
Book review
Gary Sharpe’s review of Rebirth at 50: in the end, it was not The End By Florencia Cerruti.
When Florencia Cerruti was diagnosed with Parkinson's Disease at age 47, she began using journaling, writing down her private thoughts about her experiences, as a coping mechanism and a therapeutic outlet. Through this self-reflection, she realizes early that there is some innate element of bodily wisdom in the diagnosis of an "idiopathic" chronic condition - that it contains an aspect of her body saying "no more" to a lifetime of holding herself to too high standards, of perfectionism, of "wearing the cape of superwoman". She gleans that part of the reason her body is shutting her down is far from "idiopathic" (of unknown origin) - it is trying to bring her attention to the crucial life lessons she needs to learn: that change is necessary for survival. Eventually, when she is far enough along her own journey, she realizes that her personal writings might be of value and be healing for others. As she begins to share these reflections, she is quickly encouraged by readers to create a book from her collected thoughts. This is that book.
It is a book which, within the single narrative, has a different moral of the story depending on the circumstances of the reader. A book with something to offer everyone.
It is a book about living with Parkinson's Disease. Here, the newly diagnosed will find a self-help book for improving their quality of life despite the diagnosis, written by someone who has already trodden the path before them. Here they will discover insights and understandings from an insider of what its actually like to live with PD, perspectives that simply cannot be gleaned from the neurologist who does not have the lived experience of Parkinson's - a necessary, and more hopeful, companion piece to the doom and gloom of the medical diagnosis narrative. It also explicitly serves as a guidebook, providing a framework of understanding for friends, relatives and co-workers for relating to and optimally helping their person with PD.
More widely, it is book about healing through transformation, self-reflection and personal growth, how in the suffering there may be many a teachable lesson, and a message of hope for coming out the other side, necessarily changed, but more fulfilled and content. As a narrative, it is a classic hero's journey story, of being forced to go on a quest in the face of adversity of an imposed chronic condition, a series of adventures, and the return with tales and teachable lessons of self-discovery along the way.
It is rich autobiographical narrative, by an author who can really write well, with verve and flair, who has had a very interesting ride, and who can elicit the reader's emotions in a rollercoaster of wins, setbacks, and quiet reflections, able to make the reader cry in one chapter, and laugh out loud in the next.
Or it is simply a really good read, which the interested reader won't be able to put down for long.