As a writer, it shouldn’t come as a surprise that I’m all about story. Stories drive the narrative of our lives. They are the narrative of our lives. Don Miller‘s excellent book, “A Million Miles In A Thousand Years“, tells the story of how he intentionally set out to try to tell a better story with his life. Not a bad activity for any of us. It beats killing time with Angry Birds or kitty videos.
For better or worse, people with MS have quite a story to tell. And each one has a different story. It sounds like a cliche, but each case of MS is truly unique. No two people’s experiences with the disease are the same. Sort of like snowflakes… but not as pretty… or delicate… and a lot more nasty. Like snowflakes, however, there is a serious risk of melting away before our time.
One man might have an attack (or exacerbation, as we call it to sound wicked smaht) then never show any signs of the disease again. Another might go downhill from day one. That’s called “primary progressive MS”, a condition which is blessedly rare. I know a person who went completely blind for a few months then got her sight back again. Mostly.
We all have different ways to deal with our disabilities. There are dozens (more likely hundreds) of medications, supplements, and alternative treatments, some downright weird. To get around, we employ walkers, scooters, canes, orthotics (look it up), even devices that electrically stimulate our nerves to help us walk.
It’s all part of the story.
So when you meet someone with MS, ask for his or her story. (Full disclosure time: Some of us are all too quick to dump our stories on you. And dump and dump and dump… Sorry about that.) Frankly, most people don’t want to hear that kind of story. Many people I know avoid the subject altogether. Some will ask, but preface their questions or comments with qualifiers such as, “Do you mind if I ask you about your condition?” I appreciate those folks. They don’t want to offend, but are interested enough to take the risk.
People with MS don’t mind if you ask how they’re doing. (Put that way, the alternative sounds ludicrous, doesn’t it?) Unfortunately, lots of people treat us the way they treat people who have had a loved one die recently. They don’t know what to say, so they don’t say anything. Bad Idea.
I’ve met all sorts of people with MS who have fascinating stories: one was a track star, another was drafted by an NFL team, I’ve known a dentist who had to give up his practice, people who were mistreated by their employers because of their limitations, those (like me) with loving, supportive spouses and others who were cast aside.
I suppose given my penchant for writing stories, I should write one about a person with MS. I might just do that. There is a deep well to draw from.