A similar thing might be said for the temperature and price translations (conversions, really) we were asked to make upon moving to our little corner of the EU. At some point, we stopped multiplying the Celsius temperature by 9/5 then adding 32 to get it in Fahrenheit and just got on with accepting that 18 degrees C was a fine day. As for prices, there was no way I was going to look up the currency exchange rate each time I needed to buy petrol in Euros to figure out the price in U.S. dollars. We just got on with living our lives in this new normal. Sound familiar?
How Many Times Must I Explain Life With MS?
How much energy haven’t those of us with multiple sclerosis (MS) wasted reexplaining what we mean when we say we are fatigued? How many times do we have to explain before (during, and after) being invited to an event that we’d love to come but cannot commit due to ever-changing symptoms? How often aren’t we looked at as if we’re speaking a foreign tongue as we, yet again, walk someone through what it’s like to live with MS? I’ll always remember the look someone gave me when they asked how much a neighboring house, which was for sale, might cost in U.S. dollars. “I don’t know,” I answered, “we don’t pay for anything in dollars.” Admittedly, I got a bit of a look from my wife, Caryn, for that one, as well. I might have sounded as annoyed with the question as I actually was.
MS Is Our Language Now
When it comes to living with MS, at some point, we stopped living in the world without MS and had to get on with living our best lives in the one where MS is, most days, baggage we must lug around. We are limited in the energy we have just to get the day’s tasks complete. We haven’t anything in the reserve tank to keep explaining why, what, or how we are doing something. It’s just our language now. I have begun to feel, at times, that I am doing the “chronic-speak” version of talking slower and louder when trying to communicate across the MS language barrier. I search for one-syllable words from “their” lexicon in my MS thesaurus. More often than I’d like to admit, after repeated attempts and failures, I have figuratively thrown up my hands at the “foreigner’s” lack of understanding and moved on.
It’s Not Easy to Straddle 2 Worlds
We can only be expected to work so hard for so long at translating our experiences to those who are not living them. Living with one foot in both languages (or measurement systems) is like having one planted on the dock while the other is in an untethered boat. We’ve all seen how that slapstick scene finishes. I’d rather not have crossed the border into this chronic life with multiple sclerosis. But I did, and it was a long time ago now. I’ve decided to live my best life here in the land of MS. That means I’m going to speak and think in ways that will help me live that best life. I’d say “I’m sorry” to those who want me to keep translating my reality and converting my experiences for their benefit, but I don’t have that kind of time. Let’s face it: There are those who wouldn’t understand anyway. Wishing you and your family the best of health. Cheers, Trevis
