Reacting to Non-Visible Multiple Sclerosis: A Journey of Acceptance in 5 Short Chapters

by Carolyn Magura

THRIVEnet Story of the Month - September 1999

Chapter #1: What is it?

About 35 years ago, a high school student kept having her fingers go numb. Going to the Doctor, she was told "You have poor circulation. Just move your fingers more." A decade later, after becoming a mother, she started to have visual "black-outs" and holes in her vision. An optometrist told her "You are having migraines, just be happy you don't have the headache also." A decade later, when her feet and left side went numb, a Doctor said, "You may have multiple sclerosis (MS), as a diagnosis of exclusion, because we cant find anything else." Three years later, the right side of her face went numb. A Doctor said, "Just nerves, your father just died." Finally, in 1998, a new optometrist told her that her that her double vision, dizziness and vision holes were classic symptoms of MS. With a new neurologist, the diagnosis was confirmed. After 35 years of thinking that she was "crazy," she had answers.

Chapter #2: Denial

Between 1986 and 1997 she played a major game of denial while dealing with life's crises--the end of a 23 year marriage; helping two teenagers grow into wonderful adults; the death of her parents, her father-in-law, and her grandmother; two job changes; finding the occupation of a lifetime helping people be the best they can be. She was a strong woman who could handle it! Right? To do less is to be lazy, and not a contributor.

Chapter #3: Acceptance

One year, during the denial stage, it was a very rainy year in Oregon (not redundant!) When the roof began leaking on her head at home and at the office on the same day, she broke down and decided enough was enough! For the first time in her life she considered "ending it all," because if she couldn't handle it, who was she? Depression help from a caring doctor was the first step in acceptance. Going back to a neurologist after 11 years of denial was the second step. Undergoing the tests, accepting the diagnosis, and learning as much about MS as she could was the third step. Taking back control of her life was the fourth step (beginning weekly Avonex shots; accepting the fatigue, incontinence, numbness, dizziness, using a cane for balance, etc.).

Chapter #4: Making the System Work

As the Vice President of Human Resources for a large company, she loved her work very much. One day she found herself in the following situation: the owner was on her desk phone; a senior Vice President on her cell phone; a manager and his Union Business Agent talking to her in her office; the Safety Officer and an angry employee in the hall each talking to her, AND, she couldn't remember who she was, or where she was! The time had come to remember that she was in control of the disease, it wasn't in control of her! She needed to make the system work for her--so that the company disability plans were available when she needed them; so that she would have time to fight the MonSter; that she would have her replacement picked out; and, that she could still contribute to the people she loved.

Chapter #5: Fighting the MonSter

With the fantastic support of her company, her family, and her friends, she set her plans into action. In future weeks she will also take "peer counseling" training from her local MS organization so that when she goes part-time she will help others fight the MonSter.

Copyright 1999 Carolyn Magura. All rights reserved.

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