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Reflection and retrospect: My 20-year journey with MS

By Mary Pettigrew

“It was twenty years ago today Sergeant Pepper taught the band to play…” Sorry, that’s a different story. Those first six words of my intro prompted me to think of the classic Beatles song. When it popped into my head the earworm took over. Thanks for humoring me – I’ll get back on track now.

It was 20 years ago today, when my MS journey began. On Tuesday, July 3, 2001, I found myself in the hospital undergoing tests and other diagnostics to find out what was going on with me. I had been having issues with numb and tingly feelings in my hands and from the waist down for at least a month before I realized something wasn’t right and it was time to seek medical intervention. I kept hearing the words “multiple sclerosis” being uttered by the two neurologists floating in and out of my room. I can’t recall my thoughts or feelings at the time. I just remember laying in my hospital bed staring ahead at the TV while being hooked up to megadoses of IV steroids. I remember that was the same day I would soon be wheeled down to imaging for a lumbar puncture (spinal tap). My mother and exhusband were with me at the hospital for part of the time. I’m sure they were just as confused as to what was going on with me as I was, if not more. I remember feeling very alone in those moments and days, which would soon lead up to a diagnosis which would change my life forever. To sum things up, July 3, 2001 was not a pleasant day for me, yet I’ll never forget it. 

I remember being very upset about the possibility I’d have to miss out on the next day’s Fourth of July festivities. I refused to let that happen, so per my irrational, steroid-infused insistence, I was discharged from the hospital later that day. That was a huge mistake. I had not been given any instructions for proper care needed after having a lumbar puncture and I began to feel the fierce ramifications by the next morning. Still suffering from the spinal tap headaches a couple days later, I was scheduled to see a neurosurgeon for a third opinion. Little did I know that would be the day I’d receive the news which would forever alter my life.

I barely made it to the doctor’s office. The nurses saw right away how much pain I was in, so they quickly put me into an exam room and laid me on my back. Eventually, Dr. Ellis came in, put my MRI scans up on the screen and there it was. Without question, I now had a confirmed, definitive diagnosis of MS. Honestly, I didn’t have any emotional response to this news. I seemed to take it all in as matter of fact, so I went home to share the news with family and my employer. I was oblivious to the unknown as to what the days and years would bring.

I struggled with grief, denial, and other emotional issues the first eight years after diagnosis. It was only a matter of time before I’d have to walk away from a career I adored, file for SSDI benefits, watch my marriage fall apart, and file for divorce in 2009. These were rough times. 

I had no idea who I was anymore and I was in jeopardy of falling down the rabbit hole. I wish I could’ve been able to tell myself everything would be okay and my life was about to change for the better. But this was all part of the journey. The rabbit hole was not an option for me. I knew I had to find myself again and figure out how to live this new life of mine. I also knew I couldn’t do this alone and needed some therapeutic intervention. 

As I reflect on the “me” then to the “me” today, I’m somewhat gobsmacked by this transformation and reinvention. What brought me to this good place? I think it’s a combination of things including time and age (wisdom). Never in my wildest dreams would I have thought I’d be where I am today. I’m forever grateful for everything and everyone who has played a role in getting me to this place in my life – today, tomorrow, and in the future. Perhaps the best is yet to come. 

I’ve shared my story, have you shared yours? If not, let me encourage you to take a few moments and reflect on this. I think sometimes we all have different versions of ourselves competing to be the “real us.” It’s part of the journey. Take stock of your own story, your journey with MS, and give yourself a pat on the back for moving forward. Congratulate yourself for the strength, resilience, and knowledge you’ve acquired.

If you’re newly diagnosed, your journey is only just beginning. Give yourself all the time you need to process. Don’t rush the process. It can take a while to figure things out and settle into your “new normal.” In the meantime, consider exploring new territory – embrace new ideas, activities, opportunities, and connect with others. Your MS community is an invaluable asset, so take advantage of this support system and lifeline. Whether you’re newly diagnosed or a “veteran” with MS, take a moment to reflect. Your story has value – Your story has power.