When you have multiple sclerosis, go native to learn more
It's not smart to reinvent the wheel when you're trying to adapt to disease
The Army took me to a lot of different places around the world, and if I spent enough time in any one of them, I often found myself adopting local customs. In the deserts of Afghanistan and Iraq, for example, if circumstances allowed, I usually wore a shemagh, and sometimes a dishdasha, and was glad to finish a meal with a glass of kefir.
I wasn’t going native, as some suggested, nor was I trying to disguise myself. I suppose I was trying to blend in — just not in the way people might think. I wore traditional clothing and ate in the traditional way because the people who’d been living there since the dawn of time probably knew what they were doing.
Columnist Ben Hofmeister wears a shemagh in Afghanistan, in 2006. A local man is behind him. (Photo by Ben Hofmeister)
In those environments, a scarf was indispensable and had a variety of uses. In the dry heat, loose, flowing clothing made from light cotton was the best way to stay cool, and chasing a meal with a glass of beneficial bacterial culture could keep foodborne illnesses at bay. All these traditions were traditional for a reason, and I adopted what made good sense. I wonder why it took me so long to see the good sense in going native with multiple sclerosis (MS).
After I was diagnosed, I didn’t seek the company or counsel of other people with MS for quite some time. I don’t know if it was simply my pride telling me that I could work out this disease on my own, or the thought that I was alone in this fight. It was probably some combination of the two that had me living like I was the first person in this new environment and that I had to start from square one when figuring everything out.
I also think that while I quickly discovered that everybody’s experience with MS is different, I didn’t realize that we still all shared the same disease. My symptoms may not be exactly like yours, and what works for you in getting around those symptoms may not work for me. Even so, we all have something to offer the multiple sclerosis community. That something may just be an understanding ear sometimes, but that ear can be a lifeline.
When the old customs don’t work for you anymore
My problem was that I still had plenty of lifelines from my old culture, and I hadn’t adopted the culture of the people who’d already lived in this one for a while. I think I was holding on to my old lifelines so tightly that I couldn’t see the new ones that would help me navigate this new country. The funny thing was that all I had to do was ask, and the person didn’t even have to be someone who’d lived with MS longer than me. It just had to be someone who’d already gone native.
Not realizing this benefit kept me from sharing anything I’d learned right after I’d adopted the MS culture. It wasn’t as though what I knew was a state secret; I just thought any work-around that I came up with was already well known. What works for me may not work for you, but we’ll never know unless we share. Your way of combating fatigue or spasticity might be similar to mine but shaves five minutes off the process. That may not seem like much, but with a disease that makes time a currency, it’s everything.
Like so many of the lessons I try to pass on, this one is another example of “don’t do what I did.” Ask those you know in the community. Share what you’ve learned as well. This experience isn’t a tour of duty. We have to leave some of our old traditions behind and adopt new ones that work for us. An old idiom says, “When in Rome, do as the Romans do.”
I say that when you have MS, do as the others with MS do. You’ll be glad you did.
March is Multiple Sclerosis Awareness Month, and a column written by one of our peers in the MS community will be published each day of the month. Be sure to read the wisdom and advice they share.
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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