Book Overview

These books are not about MS! .  Rather they are about the impact of a life changing diagnosis and the process of dealing with illness and loss.  My self observations over the early years happened to express themselves in poetry. A lot happens over 10 years.   The period does not have an auspicious beginning, but it does have, in my view, a graceful end.

For your enjoyment,  and to provide an introductory context for those taking a peek, I’ve included the prefaces to both volumes, along with the Foreward to Volume I written by my neurologist at the time.

FOREWORD to Volume One

Martha Johnson did not plan this journey. She has little say in the itinerary. Her ‘musings’ portray a personal voyage to explore, re-define and become comfortable with her new self with chronic illness.  Multiple sclerosis (MS) had to be recognized as one, among many, of her life’s ventures.

In the last several decades, gains have been made in our understanding of the clinical presentation and pathophysiology of multiple sclerosis. There are more treatment options now. However, what triggers this auto-immune cascade remains unclear.  There is no definitive diagnostic test. No two patients have exactly the same course. There is no known cure. So we, as neurologists, can gather data to diagnose, initiate maintenance therapy and offer support services along the way.

But we cannot answer with certainty many questions. “Why do I have this?” “What will MS mean for me on a day to day basis?” “What can I expect five or ten years from now?” Therefore the majority of people diagnosed with MS must walk along a path of uncertainty and define this new territory for themselves—only then can the rest of living continue.

In “Musing Along the Way”, Martha Johnson has done just this with a voice that resonates for all who live with chronic illness.

Dawn M. Pearson, MD   October, 2001

PREFACE  to VOLUME I  (2002)

My diagnosis of Multiple Sclerosis was pronounced in October 1997. I had been having symptoms of “something very strange” since 1996. Co-ownership with my husband of our small consulting business—was becoming an increasingly stressful proposition. In 1998, we engaged in intensive couples therapy. In June of 2000, we packed up two condos and our small business and moved from Maryland to Massachusetts—a very stressful six months on either side of that date. That summer, my limp became visible to all.

When my symptoms were still invisible to others, I had learned to announce, in the groups I led or attended, that I had been diagnosed with MS. Most often, it was reassuring to hear from people who would seek me out and share their own experience and resources. Encouraged, I dealt with my initial hesitancy to reveal myself and looked forward to the treasures that would come in response to my simple statement, “I have been diagnosed with MS.” Nine months after the move, I was feeling more relaxed and settled. I had found wonderful doctors and healers in western New England. My relationship with my husband was moving into the dark days that I knew could precede the dawn. Not so pleasant—but actually necessary.

One day, at the beginning of March 2001, these musings started to flow unbidden. Without thought about publication, I sat down at the computer and recorded what came. After another nine months, they have been compiled and basically organized themselves. They appear as my testimony to the trials, insights and adventures dealing with a chronic illness with no known cause and no known cure.

The attendant stresses that both exacerbate this dis-ease and flow from it also receive their due in these pages.  I seemed to have been documenting my passage through to a new life, with a chronic condition as one of my companions. It is something I now want to share:

  • The confusion of the early days while seeking a path
  • Anger at a system which purports to be about health
  • Naming and addressing the pain of stress at home
  • The continuing difficulty of changing my ways
  • Coping with loss and limitation, and
  • Finding my own peace and perspective.

It truly has been an adventure for me—often sad, often confusing, amazingly joyous, too. These musings document the moments of pain, joy, anger and insight, and put this 5-year journey in perspective—for now.

The “for now” is the reason I had initialed titled the original version of this book, “Book One”. Over the last 20 years, pages of notes for other books previously started and aborted have multiplied themselves in my basement storage. I am aware that, in those days, attempting to say something meaningful, I always came to a place where I doubted that my own voice belonged in public space. I projected my awareness of how much I didn’t know onto others. I feared I would be judged for what I didn’t know, rather than appreciated for my hard won insights.

I am a different woman now. And this writing has been a reasonably effortless process. While still aware of my own hesitancy to speak coherently about a journey that is not yet complete, I no longer intimidate myself with the fact that I don’t yet know what I will know in the years to come. I accept that in the next five years I will have some new perspectives about these years and may want to refine my current understandings with additional reflections. The label of “Book One” is my gift to myself. I am giving myself permission to be imperfect and incomplete, and still offer my voice to the world. After all, this is now, and I am here. This is what I think and feel today.

For me, these musings, as they have emerged, have helped make meaning of this life that is mine. Perhaps my expression in these pages will encourage those of you with other life challenges, to give voice to your own story, as imperfect, incomplete, and chaotic as it may seem to be. To have gained the ability to feel more deeply, think more clearly, and be more joyful, have not been small gifts of this process. My journey is not over, and I am not cured. However, I believe I am healing. There is a difference.

Since I hold that “healing” must precede “curing”, I choose to keep adventuring. This is as good as it gets—for now. Enjoy. . .

(Author Note:  The original “Book One” in its entirety was republished under a new title in 2011 as Volume One.  I have never felt any inclination to change even one word.)

 

PREFACE to VOLUME II (2011)

Welcome to Volume II of Musing Along the Way. Here I look back on the years that followed my early attempts to make sense of a diagnosis of multiple sclerosis and the attendant questions about my future. My writing did not end with the publishing of the original first edition in 2002. In fact I wrote hundreds of notes in poetry and prose between then and 2008, acknowledging the ups and downs of the ongoing journey. Not wanting to allow those poems to languish unseen, or that period of my life to be unrepresented, I extricated the pages I’d filed away, and took another look.

Reading them from my perspective in 2011, I was reminded again that my illness has been only one of the invitations I received to grapple with the process of growing, learning, and being at peace in my own skin. During those years, an avalanche of losses invited me to “wake up to life’s gifts.” all the biggies: death of a parent; loss of a marriage; forced retirement from a business I had founded and loved. In retrospect, I can report that I either rose to the occasion, or that time does heal. It seems like it was a little of both.

By 2008, I found myself more easily able to accept the hand that life had dealt. I entered a new phase of dealing with life’s vagaries–with less pain and more grace. Understandably, the stress of these many personal losses took a heavy toll on my health. Many of the themes mentioned in Volume I – learning to cope with an illness with no known cause or cure, and managing the loss of both mobility and an anticipated future – take a secondary role throughout the subsequent years.

The musings from 2002-2008 move beyond initial shock and desperation as, during these years, I try to make peace with the impact of other life losses, rebalance my life, and rebuild my health. The poems might be seen as grouping themselves into the “tasks” that seem to dominate my life during these years. It was these very tasks that would allow some measure of healing:

  • Witnessing the despair that accompanies illness and loss
  • Dissolving a marriage
  • Letting go–again
  • Learning to slow down––my biggest challenge
  • Making meaningful connections with others
  • Noting breakthrough moments of insight
  • Welcoming the possibility of living in “grace”

Although I didn’t always know it at the time, my new tasks were;  allowing my pain, dismantling the old, less useful ways of being, and trying to rebuild my life. Along the way, shifting from the way I was to the way I became felt like a rebirth. I watched deep despair eventually morph into hope, and angst turn into self acceptance. I became a woman with new friends – and without a to Do list. I started learning to amble, saunter, linger and wander on a physical and mental level.

My experience as a teacher and a life coach for over 25 years taught me that a major or minor breakdown, a period of “craziness,” necessarily precedes a breakthrough to a new state of being. The trouble is that I, like most other human beings when overtaken by distress, found it hard to step outside during painful times and remind myself of the larger picture. In retrospect it is very clear; time does heal. Being a loving witness to “whatever is” is crucial. When you are down, the only way to go is up.

I am pleased to note that I have in fact survived. I am here, happy and fulfilled. The poems from that tough period of my life represent my efforts to “write my way home.” Enjoy my continuing journey…