Marching onward: What MS has taught me and trained me to bear

Columnist Jamie Hughes shares lessons on dealing with uncertainty

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by Jamie Hughes |

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Well, dear readers, I took a bit of time off from writing this column, but not by choice. January was an incredibly hectic 31 days, and I spent most of them living with my parents in Florida. Why? Well, because my mother has been dealing with some health issues of her own recently, and eventually it was decided that she needed to have open-heart surgery to replace her aortic valve.

As a multiple sclerosis (MS) patient, I’ve spent a lot of time in hospitals, but thankfully, surgery isn’t something we deal with very often. This entire process, from the days leading up to my mom’s surgery to the stage of recovery in which we find ourselves these days, has been an absolute roller coaster. (And I use that knowing it’s a trite metaphor. I simply can’t think of a better way to describe it right now.)

I’ve tried to keep my father and myself calm by repeating a simple mantra that popped into my head in the hours after Mom’s procedure.

To an inexperienced sailor, every wave looks like a tsunami.

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Every little change, every setback, every moment of uncertainty — it’s all felt a hundred times more extreme to us than it has to Mom’s doctors, nurses, and technicians, and with good reason. This is our first experience with such a surgery, one that involved my mother being placed on a bypass machine to keep her alive while it was taking place. We’ve never had to deal with such uncertainty in recovery.

But to the team of physicians at the hospital, the day she went under the knife wasn’t a monumental day. It was just Tuesday. They performed two open-heart surgeries that day, including my mother’s, and two more were scheduled for the next day, and the next, and the next.

Learning to be brave

I was diagnosed with MS 18 years ago this month, and it taught me a great deal about uncertainty and how to cope with it. Until recently, I thought I had a pretty good grip on things and knew what it took to roll with the punches, but man, oh, man, has this experience disabused me of that notion.

These last few weeks have shaken me up mentally, emotionally, and spiritually. I’ve had to lean into discomfort and sit in the disagreeable space created when I admit my own powerlessness to control my situation. I’ve had to be brave when I didn’t feel it. I’ve had to let myself cry when I needed to and ask others for help even when I didn’t want to.

In some ways, MS prepared me for this. I’m stronger because of everything it’s put me through over the last 18 years, and when this experience is behind me (and please, Lord Jesus, may it be soon), I’ll be stronger still.

They say a broken clock is right twice a day, and I think that’s the case with Henry Ford. Yes, he was a mighty strange duck and a raging antisemite, but he was onto something when he wrote:

“Life is a series of experiences, each one of which makes us bigger, even though sometimes it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and griefs which we endure help us in our marching onward.”

I think the world was built for so much more than simply developing our character. It was built for love and joy, for beauty and grace, and a thousand things in between. But just because his little utilitarian heart was two sizes too small doesn’t mean he was wrong. Setbacks and griefs help us see the world for what it is; the hard knocks we endure have a way of making the path before us a little easier to follow. Being broken, in the end, is what gives us the strength to endure. And as MS patients, that’s what we do — we endure.

So keep riding the waves. And always remember the ones that look colossal today won’t feel that way forever. You’ll navigate them with ease as you venture out into deeper waters. I know because I’ve been where some of you have been, and right now, I’m going where some of you will one day follow.

I wish you well, loves. I’ll make it, and so will you.

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.


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