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How I Found My Voice When Writing About My Multiple Sclerosis

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Once upon a time, in a land very, very far away there was a boy named Michael. 

The land was Europe. Frankfurt, Germany, to be exact. It was September 1980, and it was Michael’s first day of kindergarten. 

Michael, the youngest of three boys, was excited to finally join his older brothers at school. His mother, Frances, walked proudly with him to Frankfurt Elementary #1.

They reached the door to his classroom, and instead of worry, or even tears, Michael looked back calmly at his mother — with a gleam in his eye — and said, “I’m good, Mom. I can walk myself to school tomorrow.”

That was one of my mom’s favorite stories to tell about me. She loved mentioning how independent I was growing up, even at the tender age of 4.

Although this story showcases a perceived strength of mine, that same pride and independence is also my biggest roadblock every time I sit down to write. Every. Single. Time.

Living with multiple sclerosis isn’t always conducive to writing (blurred vision and discomfort throughout my fingers are just two examples), but, for me, the bigger impediment is struggling to find my voice.

How am I coming across to the reader?

Are my words filled with negative energy? Does my prose read defeatist, full of complaints and sadness?

I fear readers view my words with pity. Poor Michael, so sad what he’s facing!

So, I edit words and phrases, hoping to avoid any dark passages. Entire stories are rewritten or even scrapped because of a nagging pride that doesn’t want others to think I can’t handle life with MS.

But there’s a catch. Living with MS isn’t easy for me. In fact, it sucks.

The battle of pride versus reality plays out every time I sit down to write. My imagination has even brought this bout to life:

In this corner, stands Michael’s pride and independence! Born in 1976, weighing in at 175 pounds, it can’t stop smiling and finding silver linings!

And … in this corner, stands multiple sclerosis! Identified in 1868, it is undefeated, having never been cured and currently affects over 2.3 million people!

Ding, ding, ding!

There are other hurdles besides just my pride. I’m not a doctor and hold no medical degree, and I don’t want to offend those who do when I write in detail about multiple sclerosis.

And MS is different for everyone. Everyone. And I’m not just talking about the symptoms or how aggressively it disables; each of us processes it differently, too. Some don’t want to share their challenges with even their family or closest friends, while others choose to be more open with their diagnosis. I want to include that as a disclaimer each time I write.

But ultimately, it’s my independence and pride that provide the biggest impediment for me trying to find my voice.

Am I a champion, overcoming — with a smile — the daily challenges of living with a disease that afflicts millions of people?

Or should I face defeat and admit that not even the silverest of linings can outweigh the sadness I feel in my heart when I see my young children look at me with concern when I struggle to walk around the house?

It finally dawned on me the other day — the answer is none of the above.

Thirty-six years ago I didn’t tell my Mom I could walk myself to school because I was full of pride — I was just sharing my honest feelings.

And that’s what I do today when I write about MS — sharing the truth. 

Sometimes, the truth can be funny or inspiring, but sometimes, it can be scary and not always have a happy ending.

Yes, I fear pity. But, worse than that would be not giving an accurate portrayal of how difficult living with MS is.

I write to bring awareness and understanding to multiple sclerosis. For those living with MS, I hope to give color to their challenges and paint a picture for their friends and family to see.

I want our challenges to be understood. I want MS to be cured.

That’s my voice.

Follow this journey on A Life Less Traveled.

Lead photo source: Thinkstock Images

Originally published: September 6, 2016
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