Better Than Fiction: What Living With MS Has Taught Me About My Own Story

Lessons learned from the 'magic and mystery' of real life

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by Jamie Hughes |

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A voracious reader since childhood, I’ve often lost myself inside fictional worlds — often preferring them to the real one where I’m forced to live. This was especially true when I was diagnosed with multiple sclerosis (MS) almost 18 years ago. When my eyes and ears were focused on the real world, I had a whole host of problems to deal with: How would my body respond to this disease? How would MS affect my mind? How would my future be different from my past?

But when I was submerged in a story, all that faded into the background like so much white noise. A book was a portal into a different world where there was no such thing as MS. I particularly loved fantasy novels — long ones full of mystery, magic, and heroes triumphing over great odds. Suffering brought about redemption there. Good won out in the end, even if it required sacrifice.

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I think it’s safe to say that those countless paperbacks and hardcover novels were my salvation in the early days of living with MS, and I wish I could thank each and every author personally for the great act of kindness they did for me in creating them.

I recently read Neil Gaiman’s short and powerful novel “The Ocean at the End of the Lane,” and it recaptured some of that magic for me. I won’t give away too much in case you want to read the book for yourself, but it’s essentially a long flashback. A middle-aged man returns to the place where he grew up after attending a funeral. The home he once lived in is no more, but a shack at the end of the road is still there, and as he’s drawn closer to it, some events he’d forgotten come leaping back into his mind. From there, Gaiman explores the differences between childhood and adulthood, the power of stories, and the many ways that love (and the lack of it) affects us all.

Three characters — the Hempstock women — are the source of great comfort and great mystery in his life, and Lettie (the youngest) says something profound to the narrator. Gaiman writes:

“Grown-ups don’t look like grown-ups on the inside either. Outside, they’re big and thoughtless and they always know what they’re doing. Inside, they look just like they always have. Like they did when they were your age. Truth is, there aren’t any grown-ups. Not one, in the whole wide world.”

You couldn’t have made me believe that as a child. In my mind, adults always knew what they were doing. I went to sleep each night in my pink gingham canopy bed, sure beyond sure that my parents were in control and that nothing bad could happen to me because they’d be there to stop it. (They provided something I’ve learned about as an adoptive parent, a concept called felt safety.)

But I’ve long since outgrown that bed. I’m now the one tucking kids in bedrooms plastered with superhero posters and filled with the comforting glow of nightlights, both of my boys trusting that I have every aspect of their lives well in hand.

But I don’t. Not really. MS taught me that. And I learned the lesson well.

I can prepare for countless eventualities. I can do my best to mitigate loss and danger, but the truth is we’re all one moment from injury, hardship, and pain. However, we can’t let that fact paralyze us. We must keep going, keep living our lives the best way we know how, keep giving and receiving love. MS tried to take that agency away from me a long time ago, and I had to make the decision to fight back. I did just that, and it’s one decision I’ve never regretted.

Sickness, loss, grief, pain — all of them and a million more things besides can derail our lives for a time, but they can’t fully stop them. Not unless we allow it to happen. And I don’t know about you, dear reader, but giving up just isn’t in my DNA.

So, yes, Lettie is right. There “aren’t any grown-ups … in the whole wide world,” just little kids in bigger bodies who are doing their best to make sense of things and do right by the people God placed in their lives. And you know what? There’s a kind of magic and mystery in that, too — something that even the best fictional world can’t capture.

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.


Marie T Kelfer avatar

Marie T Kelfer

i read this because it really resonated with me; i did the same except it was my mother's mary stewart books so i wrote brondwoodmead which got mostly 5 stars on amazon

Jamie Hughes avatar

Jamie Hughes

Well done!

Pam K avatar

Pam K

I was diagnosed with ms 55 years ago and had been having vague unidentified episodes of it for 10 years before that. I’ve experienced lots with it and read lots about it but Jamie Hughes’ writing here really touched me. I’m printing it and saving it with the words that get me through all this. Thank you so much.

Jamie Hughes avatar

Jamie Hughes

Thanks so much for letting me know this was of help to you, Pam! That's one of my constant goals with my column--to foster hope and to encourage. Keep going, love. I know it's hard, but we all get through it the same way--one day at a time.


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