Shalom and the State of My Staircase

Jamie Hughes avatar

by Jamie Hughes |

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My eldest son, like thousands of other kids in the world, struggles in school. He’s partially deaf, and some of his challenges stem from inescapable biological factors. However, there’s also a component of learned helplessness that I must address. For many years, he felt, or in some cases was flat-out told, he couldn’t do something, and he absorbed that belief and let it shape him. He also figured out the best course of action was to turn his big, beautiful, blue eyes on the nearest adult (usually a woman) and let her solve the problem. It’s a trick that’s never worked on me in the three years I’ve known him, but he still keeps trying it.

Tonight, after the 1,000th discussion about the importance of taking neat notes and keeping his folder organized, I asked him, “You know Mom’s sick, right?”

He knows it, but sometimes I don’t think he grasps the full weight of multiple sclerosis and what it could do to my life and his. I reminded him, and I didn’t pull any punches.

“I could wake up blind tomorrow,” I said. “Or I might not be able to walk.”

Those big blue eyes opened in surprise. “What do you do about it?” he asked quietly.

“I get a good night’s rest and wait to see what tomorrow brings,” I replied.

“But what if those things happen?”

“Then they do,” I said. “I can’t waste my life living in the what if.”

It’s a rule I set for myself 15 years ago when I was diagnosed. I refused to waste the days I’ve been given worrying about what may or may not happen in the ones that haven’t occurred yet. And, believe it or not, it’s worked out pretty well so far.

Have I experienced exacerbations? Yep. Did I survive? Sure did. Have all those days been sun-drenched and rose-scented? Nope. To quote from Langston Hughes’ poem “Mother to Son”— “Life for me ain’t been no crystal stair. / It’s had tacks in it, / And splinters, / And boards torn up, / And places with no carpet on the floor— / Bare.”

But like that mother says, despite all the hardship, “I’se still goin’, honey, / I’se still climbin’, / And life for me ain’t been no crystal stair.” Darn right, Mama. That’s darn right.

There simply isn’t time to sit down and whine about the state of my staircase. There’s a top floor, and I need to get there regardless of how long it takes or how challenging the climb may be. My son has to make that climb, too. We all do.

The weeks leading up to Christmas are known as Advent in most Christian churches around the world. I wrote about it around this time two years ago if you’d like to learn more about the observance. For the second week, my family lit a candle representing peace. We read scriptures, sang songs, and said a prayer asking God for his shalom in a world that feels anything but peaceful most days.

Lighting the candle on Sunday, contemplating peace, and then having the conversation with my son today reinforced something I’ve known for years. That peace isn’t something that just happens. It has to be cultivated in a calm heart. It has to be diligently sought after and maintained. I don’t want to dread tomorrow; I’d rather look forward to it with an expectant, happy, and peaceful heart.

Many blessings to you and yours, dear reader. May your homes be places of shalom this holiday season.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Angela avatar


To my fellow MS survivors, I wish peace, and understanding to you as you ride with the MS car. I say peace because after living with MS for almost 30 years I find myself moving without peace more often than I'd like.
Understanding is needed when I fall short in cultivating peace. One must lead with understanding, when one hasn't culovated peace other wise it can be a hostile environment to live in.
Nooo don't want that when ones body has become a bit of an hostile landscape.
Be kind to oneself, and others who love you.

Jamie Hughes avatar

Jamie Hughes

Be kind. The two best words we can say to one another these days. Shalom and grace to you, Angela. Merry Christmas.

Paula Johnston avatar

Paula Johnston

Merry Christmas to you and your family, and thank you for giving pieces and peace .??

Jamie Hughes avatar

Jamie Hughes

It's my honor to write for you, Paula. Thank you for your kindness. Shalom to you and yours this holiday season.

Kelly avatar


Thank you for sharing this. My dad has struggled with MS my whole life long. I am now 32 years old. My dad is my hero because he has the same attitude. Never give up. Everyday is a gift. Even if it is not a crystal stair. ♡

Jamie Hughes avatar

Jamie Hughes

Kelly, you're pretty amazing yourself. Thank you for being your dad's cheerleader. I know he appreciates it very much. Help him keep climbing, and keep up the good work on your end. Shalom to you both this season. Much love.

Robert LoDestro avatar

Robert LoDestro

Shalom and Merry Christmas to you all!

Jamie Hughes avatar

Jamie Hughes

Shalom, grace, and peace to you, Robert. Merry Christmas!


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