It’s not a fantasy: We can build a community that matters

Living with Lambert-Eaton myasthenic syndrome, we need understanding

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by Lori Dunham |

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“Friendship is the greatest of worldly goods. Certainly to me it is the chief happiness of life.” — C.S. Lewis

C.S. Lewis is one of my favorite authors. His “The Chronicles of Narnia” series captured my undivided attention as a young child. I devoured it, rereading its novel “The Lion, the Witch and the Wardrobe” almost every summer. I spent countless hours imagining the fairy-tale land of Narnia, with Aslan the lion and all the other creatures the Pevensie children come across in their adventures.

As I got older, Lewis’ life fascinated me as much as his work. I was intrigued by his spiritual walk, his time serving England during World War I, and his writing process. More than that, I was fascinated by his group of colleagues and friends, affectionately nicknamed the Inklings.

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This group of like-minded men got together regularly to share their written works in progress. Their meetings were a place where each writer could read his work aloud, to feedback and encouragement. They understood the struggles each faced, with many having had similar experiences serving in one or the other world wars.

Often, they’d meet in Oxford at a local pub, the Eagle and Child. Here, over a pint and some fish and chips, they developed plots, heroes, villains, and friendships.

I think most of us would agree that we have an innate desire for friendship and community, similar to what I imagine Lewis found in the Inklings. It’s natural to want to be a part of a community of peers who understand our life situation and make us better versions of ourselves.

Our own Inklings

It’s my hope that the Lambert-Eaton myasthenic syndrome (LEMS) community fills a piece of that void in each of our lives, including mine, with a daughter who has the disease. What a valuable thing to know we’re not alone in our experiences, struggles, and pain. To know others understand at least a degree of what we go through daily — that’s priceless.

Community is at its best when we’re able to ask questions and get answers. When we’re newly diagnosed, scared and confused, it helps when someone offers to give us a call.

There are other times when no one around you understands what it’s like to live with LEMS. At such moments, you can reach back into this disease community and find a plethora of people who understand exactly what it means. You’ll immediately know you’re not alone.

The Inklings went on to excel in academia, influencing culture through philosophy, theology, and the arts. Perhaps the most famous of the Inklings, along with Lewis, was J.R.R. Tolkien. Because of his time spent with the Inklings, Tolkien went on to pen the epic fantasy novels “The Hobbit” and “The Lord of the Rings” trilogy, which are some of the most famous works of fantasy literature even today.

Let’s be a community that, like the Inklings, spurs all of our number to be the best versions of ourselves. May we join and assist our comrades in their struggles, encourage them on the hard days, and hold them up on the days when it all feels too much.

That’s the beauty of our community.

Note: Lambert-Eaton News 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.


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