Book Excerpt


The official diagnosis of Multiple Sclerosis (MS) did not come for more than twenty years after I had the first symptom when I was a senior in college. My mother and an older sister died when I was in my late teens. My father, overcome with grief, drank himself senseless and died when I was twenty-three. My much older surviving brother and sister (twenty-one and thirteen years respectively) were raising families of their own and, while they did their best, no one had the time to care very much about what I was going through. I was on my own and had to deal with it. Even if I didn’t fully realize or understand what “it” was.

And deal with it I have for forty years. Not always perfectly. Not always successfully. But never not trying. My life journey has had joys and challenges. We have survived as a couple and as a family. We count our blessings every day.

I chose an alternative path, relying only when necessary on physicians and pharmaceuticals, depending instead on less traditional forms of treatment such as chiropractic, acupuncture, and breast milk. That’s right—milk from nursing mothers.

I have also had counseling for the past twenty-five years as I navigate through life. That hour when I can let down my guard, talking to an empathic listener who doesn’t have to live with me or my medical issues, is a steam valve for my stressful life.

Twenty-five years ago, about the same time I started therapy, I began writing.  Because I was not able to speak about it, I wrote out my pain. Journals. Essays. Memories. The grieving process, especially in the beginning, was excruciating. I learned that the only way to get through loss was to allow my feelings. I was liberated by putting the difficulties of my life on paper and offering the writing up for literary critique, not pity.

The teachers and fellow writers I met in classes encouraged me. Dig deep. Think big. They assured me that there were others who would be interested in or helped by reading about the experiences I have had with MS along for the ride.

With the great help of my wonderful editor, Carol Cartaino, I have organized the essays into chapters so there is the semblance of a chronological and thematic structure. Each chapter contains a number of essays that were written as individual entities but which deal with the same general period of time.

After my daughter read the first third of an early version of the book, she asked me: “What’s your point?” I was not insulted. She was critiquing the non-contiguous nature of the collection. Her question struck home. What was my point? Did I have one? Did I need one? My point is the same as my motivation: to invite readers into my world. I made the conscious decision, while still in my teens, to hide my pain and fear; to present to the world a person who seemed to fit her environment while, at the same time, being wildly out of sync with it.

If I tell you I have the measles, spots immediately come to mind. If I tell you I have Multiple Sclerosis, the image is vague. Cane? Wheelchair? MS is a disease that’s hard to capture in a symbol.  We all live it our own way. This is MS my way, which includes the mobility devices mentioned but also issues with vision, neuropathies, bladder, and depression. MS is a systemic disease and the inflammation has far-ranging effects throughout the body.

This book will provide a look into my world as a person living with MS. I will share whatever knowledge I’ve accumulated during my four decades of struggle. The decisions I’ve made may inform others who are faced with crushing losses, pernicious diseases, and disagreeable doctors. There are many of us, and we each have to be our own advocate.