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The simple math of MS
By Maggie Courier
Let’s start at the very beginning.
Being positive is good, right? We want to be positive, don’t we? I lived my life being upbeat and optimistic; negativity was not something that I was known for. I was positive – I thought I knew what that meant until my
neurologist
changed that word’s meaning for me when I was 26 years old.
I was a young, single woman working diligently on my career course. I was a marketing director at a local newspaper and I was happy and proud. Then, one day, I felt a bit off. I had
problems with my vision
and my right leg felt like it was asleep. It was very unfamiliar for me to feel “sick,” as I had grown up with two registered nurses as my parents. Health problems were rather nonexistent to me. When I called my mother to discuss these odd sensations, she told me to go and see my primary care physician. This was strange for me to hear, as mom and dad had always tended to “ouchies” and “boo-boos.” Now I was nervous because mom couldn’t fix me.
So, I made the appointment, went to my very comforting doctor, and he put me through a vision test. His results showed nothing he could treat so I was referred to an ophthalmologist. His testing also showed nothing he could treat. To keep my spirits up, he suggested I wear a patch to alleviate the double vision. Then I was handed a prescription to have an
MRI
. What?
What is an MRI? I called the recommended hospital, made an appointment and was told what and what not to wear. When I arrived for the MRI, I was questioned about any metal I have in my body, as the machine that would be used for this procedure was a giant magnet that would rip anything made of metal right out of my body. What? I replied with a solid “No," though just the thought of the power of this monstrous machine was horrifying. I was now officially scared, wondering what could be wrong with me? Sensing my fear, the nurses told me not to worry. I would be fine as I was escorted to what looked like a rocket. I was told to lay still on a conveyer belt and to close my eyes and remain completely still as I was mechanically sent into this tomb. I was given a headset to block out what I was told would be “very loud sounds.” That, I would soon realize, was a mild explanation of the gut-wrenching whirring, screeching, and pounding by which I would spend what seemed like hours being deafened. Though the actual time of this incarceration was merely 45 minutes, I do not think I was ever as happy to see the bright, white walls of a hospital room. The darkness had ended, the coffin was opened, and I could move again.
The following week came, and I was called back to the hospital to pick up the films and result document from the MRI. I did this and quickly returned to my office to investigate what this document meant. Words that were foreign and frightening – “shows signs of a demyelinating disease” – were glaring at me. The Internet would have an answer for me, right? Wrong. The Internet became the source of terror – demyelinating disease was a description of multiple sclerosis. That term was vaguely familiar, as my mother had once mentioned her father, (whom I had never known), died from
symptoms
related to this illness, which was MS.
So, I called mom, explained the results and she decided she would help me find a doctor who could investigate these results. The term MS was never brought up between us at this time. She was familiar with area doctors, so she made an appointment with a neurologist who saw me days later. A series of questions was asked to both me and my mother, and the doctor immediately set up more testing. First, I was sent to a neuro-ophthalmologist to investigate and treat my vision problem. Second, I was scheduled for the dreaded
lumbar puncture
.
Within weeks, all testing was completed and I was back at work. I answered a phone call at my desk and was told I had a doctor trying to reach me. Anxiously, I accepted the call from my neurologist. He told me he had test results to share me, and he did just that, over the phone. “The results show positive.
You have multiple sclerosis
.” The word ‘positive’ now took on a brand-new meaning.
Days of devastation followed – I was put on IV steroids by a home-health nurse for two long days. I was told I would start taking medicine through self-administered injections. I was told to take time off work to adjust and become acclimated to my new life. Accept all these negative changes? Not my plan. I accepted the facts, but I refused to be dominated by this new negative aspect of my life. I went back to work two weeks later. I explained my situation to the bosses, I learned how to manage my
medication
, and I adjusted. I did not change, I adjusted.
I was able to take on this new life, but I soon learned that not everyone else was. Four months after my diagnosis, I was called into the boss’s office and was told that
my position at the paper
had been eliminated. What? I was good at my job. I needed my job. Well, apparently my job did not need me. I was given a severance package and sent on my way. In less than six months I was hit hard with two negative life altering experiences – an MS diagnosis and the loss of my career. However, I was soon to learn the mathematical truth that two negatives truly do equal a positive.
MS could not stop me from needing to work, so over the following years, I worked at several temporary positions in media and public relations, though nothing fit my idea of a coveted profession. I was constantly hunting through newspapers’ classified employment ads and then one day I saw it. A position was available for a marketing director at MS Focus: the Multiple Sclerosis Foundation. The two negatives, (losing my marketing job and my newly diagnosed MS), became a potential positive.
I was unfamiliar with MS Focus, but I did my research and I liked what I found. I pulled together my resume and applied for the job. The following week, I was called in for an interview, met with the administrative staff, and left with a smile. Whether or not I was to be hired, I had been introduced to an organization that would help on my MS journey. Soon enough, that smile became bigger and brighter, as I received an offer to accept the job – I found a new home at MS Focus.
At MS Focus, ideas and projects kept me professionally busy and personally satisfied as I was part of a team offering help and support for those with MS as part of our lives. I was there for the birth of National MS Education and Awareness Month – an imperative project that fills me, to this day, with comfort and joy. I watched the early years of the Cruise for a Cause; I was able to get air time on radio and television to promote the MS Focus. Articles were published and I was lucky to be a part of creating many print resources. Benefits that are still available were born during my time at the MS Focus.
After a few exceptional years, it was time for me to say goodbye, as professionally, I felt a need to move on. I knew that my time at MS Focus helped me become strong and secure in myself, professionally and personally, and I also knew I had become helpful for others. I could work with MS patients and families, but I felt there was more I could do. I chose to stay in the world of nonprofits, eventually finding my path would lead me to my true professional pinnacle – I became a high school teacher.