All About Multiple Sclerosis

More MS news articles for December 2003

Many Lessons, Some Yet to Be Learned

An old friend returns to the pages of Real Living with Multiple Sclerosis

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December 2, 2003
Marcia T Tofteland
Real Living with Multiple Sclerosis

WELCOME TO THE FIRST ARTICLE of my new column, "The Journey Toward Acceptance."

I've been writing for Real Living With Multiple Sclerosis since 1994. Some of you know me through my previous columns, "Grab Bars" and "The Paths of Parenthood."

During my recent writing hiatus from Real Living with Multiple Sclerosis, I was forced to accept some difficult events. Three deaths affected me within a very short period: my mother, a lifelong friend of my family, and a dear friend of my husband and mine. This grieving process was compounded by a series of serious personal issues. all three losses required an ever-deepening level of acceptance for me to find peace in my chaotic life. Upon reflection, I realized that I spend the majority of my time attempting acceptance, and once achieving it, attempting to stay there.

What exactly is it that I need to accept? The consequences of my physical disability have affected nearly every aspect of my life, from as early as 4 years after diagnosis. I had to quit working, giving up a career that I loved, important income that I was contributing to my family, much of my identity (as 1 saw it then), and much of my self-esteem. I soon stopped trying to be the type of wife and mother that I'd always thought I'd be. These changes prompted me to feel deep anger, despair, and serious depression.

Looking for answers

How was I going to accept all of this? Did I care if I accepted anything? Did I care if I climbed out of the deep, ominous hole into which I was sinking? If I did want to climb out, did I have any idea how to accomplish it?

A huge irony, as I look back on it years later, is that I was still very physically able then, compared to now. I was still able to do a great deal, though my life was certainly already changing dramatically because of the MS.

As my MS progressed, the losses became more serious and life altering. I know that I've adjusted to many of the losses and accepted many of them on some level. As the years have gone by, I've learned many lessons. 13#vety=7;enum=1; Over the years, I've benefited from the theories, the wisdom, and the gifts given to me by the works of such writers as Rabbi Harold Kushner, Dr. Bernie Siegel, Shakti Gwaine, Parker Palmer, and Deepak Chopra, among many others. I thank them all for their gifts of insight into life in general, and the epiphanies their work has inspired in my own life. They've shown me paths to choice, to adjustment, and to some levels of acceptance and unselfishness.

But where are the "self-help" books that are written to help people whose lives are dramatically changed like those of us with MS? Where is the "guru" in print or on audio book with advice or how-to guidelines teaching coping with this lifealtering physical disability? Rabbi Kushner, Dr. Siegel, Ms. Gwaine, Mr. Palmer, and Dr. Chopra don't specifically address the segment of our population with physical disabilities.

I'm currently struggling to reach even deeper levels of acceptance of the consequences of having secondary progressive MS. I long for someone to show me how to deal with the emotional, rational, spiritual, and metaphysical levels of living a compromised and greatly limited physical existence.

I've learned life lessons from wise men and women, such as my husband, Curt. I've learned that no one else can walk any of the paths for me. To reach deeper levels of acceptance, I must go deeper and deeper into myself. I must honestly confront the often-painful truths that live deeply within a life of physical disability.

I find myself passionately and desperately needing to explore, through writing, the journey and the many paths that I must travel down to find acceptance for the reality of what is and not what I wish the reality would be. As always, I want to share my "travels" with all of you.

I'll include readers more directly in this column than in my previous "The Paths of Parenthood." I want to include quotes from your communications whenever possible. I solicit your e-mail or snail mail comments, reactions, and questions to what I write in this column. You can reach me by mail at the Real Living offices: 1111 Bethlehem Pike, P.O. Box 908, Springhouse, PA 19477.

Over time, together we'll confront and explore the issues of loss, adjustment, acceptance and its twin, forgiveness. I also look forward to exploring the simple pleasures life can provide for those of us living with physical disability.

Did I care if I climbed out of the deep, ominous hole into which I was sinking? If I did want to climb out, did I have any idea how to accomplish that?

Marcia Tarbis Tofteland was diagnosed with MS in 1982. She has a bachelor's degree in sociology and certification in social work.
 

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