Once upon a time, in a land far, 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 four.
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 MS is not always conducive to writing (blurred vision and discomfort throughout my fingers, are 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 is struggling with!
So, I edit words and phrases, hoping to avoid any dark passages. Entire stories are re-written 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. In fact, it sucks.
The battle of Pride vs. Reality plays out every time I sit down to write. My imagination has even brought this bout to life:
There are other mental 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.
In this corner, stands Michael’s Pride & 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! Discovered in 1868, it is undefeated having never been cured and currently affects over 2.3 million people!
Ding, ding ding!
And MS is different for everyone. Everyone. And I’m not just talking about the symptoms or how aggressively it disables; each of us process it differently, too. Some don’t want to share their struggle 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 struggles of living with a disease that affects 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 as 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 trying to be prideful – I was just sharing my honest feelings.
And that’s what I do today when I write about MS, sharing my truth.
Sometimes, that 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 struggles – to help them feel less alone – while painting a picture for their friends and family to see.
I want our struggle to be understood. I want MS to be cured.
That’s my voice.