Our Scars Create Our Stories

It’s a typical winter morning with a sky dark as night and a middle-schooler taking too long. As I stand waiting for my coffee to brew, I realize my test results have been posted. It’s quick, as I just had my MRI the day before. I decide not to open until all three drop-offs are complete. Number one daily rule: always caffeinate first.

As a reader of a blog all things motherhood, you might assume these results have to do with baby-making, baby-having, or baby-raising. Not today. Remember, we all have life moments and events that shape us, and some occur prior to our precious littles. These results reflect something that’s been inside of me for 20+ years, and this month is a time in Michigan to raise awareness for so many like me.

I have multiple sclerosis, most commonly referred to as MS.

MS is one of those diseases that typically you’ve become familiar with because someone you hold dear faced a diagnosis, a supporting character you love has it, or you really don’t have a clue what it’s about. We know our readers land somewhere across these camps, and we want to be a part of the education and support surrounding this unpredictable and often disabling disease.

The test results I’m waiting for will show if my MS is still in remission. I have been fortunate in my journey with this disease, but this was not always so. I was on the brink of my 20s (way back in 1995) when my symptoms began. Triggered by a back injury, I slowly started to experience numbness, tingling, and eventually severe weakness in both of my legs; just a few of the many things that can happen to your body during a MS exacerbation (or flare-up).

We didn’t know why this was happening, but we knew it wasn’t good. We speculated there was a disc issue or pulled muscles affecting my nerves, but it quickly became clear to the doctors it was more than that. After a series of tests (MRI, a spinal tap, and evoked potentials), it was determined that I had MS. It happened fast and furious and it was a game-changer.

Some of the details around that time are unclear. I’m not as young as I used to be, and maybe I’ve blocked some of it out to protect myself, but I’ll never forget the confirmation call. I was in my bed – walking was nearly impossible at this point. My mom offered me the phone. I couldn’t. I was so young. I was so scared. Google wasn’t yet a verb and the bodies of this disease were represented by Annette Funicello and Richard Pryor. Look them up. I felt hopeless.

All results confirmed a positive diagnosis.

Would I ever walk again? Would the feeling come back in my legs? Will everyone always look at me with that new face of pity? Will I be a burden to my family? Will I ever have my own family? Will this new man in my life that I adore stay by my side, or will it just all be too much?

I cried and cried and cried.

Now that we knew what was happening, it was time for treatment. I’m not sure if you’ve ever experienced the wrath of steroids, but oh my gosh. Six weeks of mood swings, night sweats, bad dreams, having my face blow up like a heffalump, and non-stop eating (seriously, I never stopped). But, necessary it was.

I got back on my feet and recovered. Until the next time, less than a year later. A severe case of the flu triggered a new gaggle of symptoms. This time it was my upper half. I couldn’t see straight. Everything felt sideways. I vividly remember trying to put in my contacts. My brain kept forcing the lens against my forehead, rather than my eye. It didn’t make sense.

MS is like that. It feels like it doesn’t make sense. It lives in the central nervous system and disrupts the flow of information within the brain, and between the brain and the body. According to the National MS Society, it is thought to be an immune-mediated disorder, in which the immune system attacks healthy tissue in the CNS. These attacks are extremely unpredictable and vary greatly from person-to-person.

After a brief hospital stay, I went home that Christmas Eve morning with an IV bag filled with more steroids. I dreaded it, but they somehow worked again. With the support of my loving family, I dug deep and found my strength, my faith, and went on to live a normal life.

Mine is just one MS story; one person’s experience (so far) with a disease that affects 2.5 million people worldwide, including 400,000 Americans. Like many others, I have more years (God willing) to know that all could change. Thankfully, for now, those results did show my disease has not progressed. There are no active lesions on my brain or spinal cord, but only a trail of scar tissue left behind (sclerosis).

As I process this information, I am grateful over 20 years later to know the answers to all of those questions.

Yes, I did walk again. I actually ran two half-marathons, and I’m considering my third this year.

The numbness in my legs and feet never fully returned. I do have balance issues, but I’ve adapted.

I know now those faces of pity were only filled with love.

How could I possibly be a burden to my family when I’m taking care of my own

And, that new guy I talked about, he stuck with me. We’ll be married 19 years this May.

I hope my story is one that brings hope to those newly facing, or in the midst of the battle, with this incurable disease. I am thankful everyday my arms and legs still work. I also try to remember we are all people with scars and burdens to face, you just can find mine on an MRI.

Do you have any personal experience with MS?

If you would like more information about Multiple Sclerosis, or want to learn about MS in your community, click here:
https://www.nationalmssociety.org/Chapters/MIG