A couple of months before I had the pain and numbness in my legs that (finally) resulted in my MS diagnosis, I became terrified of driving. I can’t describe the terror that I felt just trying to navigate short, familiar routes –- other cars always seemed too close and unpredictable. I would reduce my speed to a crawl, even on very busy streets, and the inevitable honking would further disorient and scare me -- usually resulting in tears. I mentioned it to a couple of people, and the responses of “maybe you need to practice more” only served to make me feel sad and lonely. This book would have helped.
Life in the "Mental Wheelchair"
Jeffrey Gingold very accurately describes similar situations and emotions that he encountered in daily life in his book. Facing the Cognitive Challenges of Multiple Sclerosis is a compelling account of struggling with the invisible symptoms of MS.
I was grateful for the perspective of a person who is trying to hide his MS from people he worked with, clients, and his two young daughters.
Gingold lived with MS for over five years before sharing this fact with colleagues at the law firm where he was a partner, and artfully describes the loneliness, stress and frustration of trying to “seem normal” as well as keep up with a staggering caseload. He describes it as: “My thoughts began to drag, and it was difficult to absorb even the simplest information. My mind was busy with: focus on sitting up straight, keep eyes wide-open, lift both knees to avoid drop-foot stumbling, and show a confident smile. It was a strained balance, perhaps similar to trying to hand-write federal legislation while scuba-diving on a half-tank of air and watching for sharks.”
Gingold takes us on a journey of coping with increasingly strange cognitive symptoms, starting with occasions of mental “lapses,” losing his place during a court appearance or university lecture, and culminating in a memorable instance of not recognizing his own wife. He does a good job in illustrating the nightmarish aspects of this cognitive dysfunction, while reassuring the reader with words from his physicians and personal experiences that these things can be adapted to, even if they require big changes.
The “Perspectives” sections at the end of each chapter contain important tips and nuggets of hard-earned advice. I was inspired by several things that I read there. The one that I keep coming back to (and that ended up on a note posted next to my computer) is from the “It’s More Than Just Sitting Through a Series of Appointments” section:
“Never give in to MS. MS exacerbations do not have the final word. Ask your neurologist for a referral to occupational, physical, or massage therapy, or any other kind of mind or body therapy that might prevent deconditioning and teach you strategies for the improvement in thinking or movement.”
Getting the Most Out of This Book
My criticisms of the book are few in terms of information, and may reflect my own cognitive “peculiarities.” I wish the “Perspectives” sections mentioned above had been grouped into a series of chapters at the end of the book, rather than located at the end of each chapter. I found myself scanning them or skipping these valuable sections in order to keep reading the narrative account of Gingold’s life with MS. I recommend going back after completing the book and reading (or rereading) these sections to get the full benefit of them.
Also, frequently in the narrative sections, there are gray call-out boxes in the middle of the text with one-sentence general observations about MS that relate to the author’s experiences. I found these interruptions a little jarring and distracting, and that took a little effort to get back into the flow of the narrative. I began ignoring them and found that reading was smoother.
My only unfulfilled “wish” in terms of information in this book was about neuropsychological testing, medications and therapies. I was excited when Gingold started recounting his initial visit to his neuropsychiatrist and his shock that the testing would last all day. Unfortunately, that was the end of the discussion of the testing, besides mentioning a thick report containing his results, which were also not discussed in detail. I would have loved to know what the testing consisted of, what he was feeling during the process, and any options that were presented to him as a result.
This Book Can Help
Facing the Cognitive Challenges of Multiple Sclerosis has an important place on the bookshelves of people with MS. Whether or not you are dealing with cognitive dysfunction (or are not quite sure), this is a heartfelt description of the daily struggles, the small and large losses, and the (sometimes embarrassing) emotions tied to the mental and physical challenges of MS.
In the end, it is also a story of quiet victory and dignity in the face of this disease. I am very glad that I read it. You will be, too.