An Unexpected Plot Twist in My Life


This is my life, with a plot twist that I couldn’t have imagined, planned for or anticipated, marked by sudden detours of confusion, grieving, learning and, ultimately, unexpected joy.

Illustration by Mark Weber
Illustration by Mark Weber

I was working long, stressful days as an elementary principal while attending graduate school full time with the goal of completing my doctoral degree in educational leadership. My husband, a demanding man, was a prominent local pastor in our small community. We were raising two small children.

In the final stages of my doctoral dissertation, I began having terrible headaches in the middle of the night. I attributed them to stress — job, studies and marriage. While I considered myself successful in my job and studies, I felt like a failure in my marriage, which had become nothing more than a facade. Unable to continue living the lie, I began divorce proceedings.

For the headaches, my doctor ordered an MRI. I wasn’t overly concerned about the procedure. My life was mapped out, many of my goals already accomplished. It was a time for self-assurance and basking in my achievements.

I left the clinic feeling confident my MRI wouldn’t show anything unusual, went about my carefully scripted life and completed my degree. As I expected, my headaches disappeared. I forgot about the MRI. Apparently, so had my doctor — he never called to inform me of the results.

Within two years I was struggling with being constantly dizzy and found myself going back in for another MRI to try to find the cause. As the technician pushed me into the tube, she looked at the previous report and casually asked, “How are you dealing with your multiple sclerosis?”

I was speechless, confused, stunned. Finally, I uttered, “I want a copy of that report.” The banging began in the MRI tunnel, and I was unable to put my thoughts together.

Later I walked across the parking lot in a daze, sat in my car and read the two-year-old report for the first time, thinking it must not be about me. A flood of thoughts raced through my head. Denial gave way to tears as I realized the report was about me — a different me — a person with multiple sclerosis. Thus began a journey I never imagined, a plot twist I never saw coming.

Learning to Live With MS
Certainly I was upset by the diagnosis, but I was angrier with the doctor for not informing me of the diagnosis. It was now too late to sue him for non-disclosure. It was also too late to take back my divorce from a marriage that might have given me health care assurances. I probably would not have had the courage to leave the marriage had I known about the diagnosis two years prior.

Yet I do not regret choosing divorce. I certainly regret that my children had to go through it, but I’m happy that I no longer live in a constantly brewing kettle.

The daily fear that many live with as part of this disease is mind numbing. Every day can bring the loss of some muscle or bodily function. What we do not know about the disease is when and how the progression will occur. That is why no two people with MS will exhibit the same symptoms or loss of function.

In the early days of my disease I wanted to know how many brain lesions I had. I wanted a definitive, scientific response to what functions in my body were affected by each lesion. I’m glad my doctor never responded to my inquiry. I’ve come to believe that how I meditate on each lesion in my brain influences their impact on my daily life.

Being an educator for almost 20 years, I set about doing what I’ve always done — educating myself. I knew of only two people who had MS in my circle of acquaintances. I didn’t know much about the disease but did know that I didn’t want to follow these women’s paths.

All my learning has taught me how to live well with this disease. I’ve learned about various alternative medications, numerous clinical trials, countless adaptive exercises, modified home equipment and many food alternatives to strengthen my immune system. General attitude modifications and spiritual wellness activities have become a regular part of my daily activities.

I’ve come to learn that depression is a very common symptom of MS. The root cause of the depression might be the disease activity or having to live with an incurable progressively disabling disease. I’ve learned there are many things I can do to avoid the depression.

I determined that my will was stronger and more stubborn than any MS disease activity in my body. So I exercise regularly, eat well, participate in church activities, continue to meet with friends, sit by an amber light daily (it activates a natural melatonin response for better sleep), play brain games, pray, meditate, read and occasionally give myself permission to wallow.

Usually when I tell my father that I’m wallowing he asks me for how long. I take 24-72 hours to do some serious wallowing — a prolonged naval gazing and self-centered “woe is me” kind of thinking. Then my father calls me to ask if I’m done.

I find that by giving myself permission to wallow, I am actually giving myself a freeing gift. It allows me to go through the pain that I’m feeling and not avoid or dance around it. I embrace my sadness and get to the other side of the pain. I welcome my wallowing and try to live it fully — lying in bed most of the day in my pajamas, watching stupid TV, not answering texts or emails, eating unhealthy snacks and listening to really loud music.

I struggled in the early years with the stages of grief I encountered. I remember telling my lead office manager, “I don’t want to be the next poster child for MS!” Yet almost 10 years since my initial diagnosis, I can honestly say that I now love my multiple sclerosis. It has opened up a world for me that I never knew existed and given me endless opportunities to use my gifts and talents in the service of other people.

Enjoying the Benefits
I have no idea if I will be bedridden some day, but I’ve already determined that I’m going to have a great bed, TV and a built-in pool boy to entertain me. Disney darling of the ’50s and ’60s, Annette Funicello, was diagnosed with one of the most debilitating forms of MS — primary progressive — at the height of her career. She lived her final years, no longer able to walk or talk, being cared for and adored by her husband. I could relate to her early years of being accused of being drunk because of the way I was walking and talking. My boss informed me that parents of my elementary school were saying the same thing about me. So I decided to retire early and set about taking care of my body rather than other people’s children.

I’ve attended countless doctor talks, pharmacological-sponsored talks, Internet webinars, read countless books and connected with others in MS support groups. I knew, unlike with my cancer of 10 years prior, that I couldn’t beat it out of my system. I needed to figure out a way to let it live graciously within my system.

It has brought a renewal of my faith, in which God has given me countless Christian believers and seekers in a church home that feels more real than I’ve ever known. Learning about MS has given me a greater understanding of drugs, symptom management strategies and an understanding of ADA regulations. Most importantly, it has opened doors that I never knew existed. It has also forced me to do something I never did very well — slow down.

I have a blue parking pass that allows me to get a front row parking spot in most parking lots. I once hid the pass, but now I will bypass a store if there isn’t an open blue parking spot. I can no longer write with my right hand. So, I get to know strangers who fill out forms for me. I get to walk with two cool REI walking poles that only serious hikers use while climbing a trail. I get 10-plus hours of beauty rest every night. I get to work out at the gym with the wise seniors. I’m the youngest of the bunch, kind of like their mascot, cheering us all on in our swimming pool workouts.

I get to listen to others more than I talk. It amazes me that what Plato said — “Thinking is the talking of the soul with itself” — has actually given me more of an education than all my degrees combined! I get to focus on one item at a time, as I can no longer multitask. I get to graciously accept help from others — strangers as well as friends.

Might I have learned all those things without having a progressively debilitating disease? I think not. Mainly, because I tend toward being stubborn, self-centered and egotistical. The wonder of my multiple sclerosis is that I’ve learned patience, grace, and tact. I would wish this disease on no one. Yet, the benefits I’ve learned about and received from this MS plot twist in my life — I’d wish on everyone.


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