Winning: My Battle with MS
Last updated: May 2022
I’ll let Jennifer tell you about her MS diagnosis, but here’s a little bit about what happened to me in December 1999 … and it still is happening.
I didn’t actually cry when I first learned that the cause of the issues I was having was, “… most likely Multiple Sclerosis.”
Nope. Didn’t cry.
I was fearless as I talked on the phone with my primary care physician who called me at work on Friday, Dec. 17, 1999, to share the radiologist’s report with me.
The call that changed everything
“Multiple Sclerosis, huh?” I asked. “Yeah, I sort of had a sense that was a possibility. What’s that? No, I’ll be fine. OK. I’ll call the neurologist you’re recommending for an appointment to review the report and confirm a diagnosis. Yes, I have his number written down. Thank you again for doing all of this testing to see why my hands, feet and chest are so numb. Merry Christmas to you too. Goodbye.”
I thought to myself, “So brave, Dan. So brave.” I hung up the phone, got up from my chair and closed my office door.
Then I sobbed.
MS is a forever sort of deal
Multiple Sclerosis. This isn’t like a common cold. MS is a forever sort of deal. It isn’t ever going away. That is, until they find a cure.
And it’s a progressive disease. Progressive. It’s perpetually attacking my body. Intermittently. Continually. Uncontrollably. Always ready to pounce with or without warning. And now I have it, and I did nothing to get it.
MS just chose me.
I’m not sure how long I bawled or what halted my hysterics that day. Somehow I continued to work until 5 p.m., and finally drove home, ate a grilled cheese sandwich, cried a little more, and went to sleep.
I was still the same person
I woke up the following morning infused with an intricate sense of calm, peace, urgency and optimism.
Nothing about me was different. Absolutely nothing. I may have MS, but I truly was the same person I was the previous day when I got the call that temporarily shattered my world.
And it was on this day after – on December 18, 1999 — that I determined how I was going to handle this unwanted invader. I started trash talking MS.
Me vs. MS
MS? You chose me. But from this day forward: I. Own. You.
And so began the competition.
It’s me vs. the disease. I’d like to think the odds are in my favor, and here’s why.
I’m the captain of my team, and the great thing is I’m not facing this fight alone. I have a strong team of people behind me, everyone from my family to friends, caregivers, medical professionals and more. These are the people who give me strength and encouragement.
Support from my team
And I can choose who is and isn’t on my team. I call the shots and can add people who will help me to win, and I am free to cut those who are holding me back from staying in the game.
Like football has quarters and baseball has innings, I have days with MS. Depending on the day or symptom, I’ve developed different strategies for taking an offensive or defensive stand against MS.
I refuse to give in
Some days, everything goes as planned, while other days I need to shoot from the hip (no disease-modifying therapy pun intended) and make up a new play to counterattack what the disease fires at me.
Sure, the disease has the power to take away some of my abilities, friends, independence and sense of security. But I refuse to give into it and let it take away my spirit, enthusiasm, determination and sense of hope.
I’ve been engaged in this fight for nearly 6,500 days, and I know in my heart that I am winning.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: