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

Chapter 1:  Identification

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, a new mother 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, her feet and left side went numb, and a Dr. said “You may have multiple sclerosis (MS)."  It was a diagnosis of exclusion because they couldn't find anything else.  Three years later, the right side of her face went numb.  A doctor declared that it was  “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 finally had answers.

Chapter 2: Denial

Between 1986 and 1997, various life crises forced her into a major game of denial. There was no time for dealing with debilitating illness while facing the end of a 23 year marriage; helping two teenagers grow into wonderful adults; the death of a grandmother, her father-in-law and both parents; two job changes and now having 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.

Chapter 3: Acceptance

At one point toward in that long denial period, it was a very rainy year in Oregon (not redundant!). When the roof began leaking on her head at both home and 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, suffering serious doubt in her ability to manage what her life had become. Seeking depression counseling from a caring doctor was the first step in acceptance. Going back to a neurological specialist after 11 years of denial was the second step. Enduring exhaustive batteries of tests and establishing the diagnosis prompted her to learn as much about MS as she could – step three. Then came all of the literal as well as figurative steps in adjusting to her new life: weekly Avonex shots, accepting the fatigue, incontinence, numbness, dizziness, using a cane for balance, etc.

Chapter 4: Making the System Work for Her

She loved her job as Vice President of Human Resources for a large industrial company. One day she found herself in the following situation: her CEO was on the phone, a Sr. VP was on her cell phone, a manager and his Union Business Agent were talking to her in her office; the Safety Officer and an angry employee were in the hall, both talking to her. Suddenly she couldn’t remember who or where was! The time had come to realize that she was in control of the disease; it wasn’t in control of her! With a thorough understanding of her company’s disability plans, she now needed to put that understanding – and the system – to work for her. She knew that the available benefits would give her the much-needed time to fight this new monster, as well as take care of practical matters like hiring a replacement and paying more bills on less salary. Most importantly, qualifying for short-term and long-term disability would help maintain her quality of life so that she could still contribute to lives of those she loved.

Chapter 5:  Helping Others Fight the Monster

With the fantastic support of her company, her family, and her friends, she set her plans into action. In October 2001, she took peer counseling training from her local MS organization and, after dropping back to part-time employment, she became dedicated to helping others help themselves.

Carolyn S. Magura is considered a national expert in the field of MS symptom and issue management.  To submit a specific question, please feel free to visit her forum at AllExperts.com


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