Have you ever been inside a rainbow? I have been twice. I wrote about the second experience in my memoir, Chef Interrupted.
“As the misty cloud slipped down toward the lane and thus the cottage, the air around it became a muted haze, and it grew fainter in color. The cloud entered my front garden, the sun was completely dulled for a brief moment, and with it came the dancing colors of the rainbow. I knew this sensation of being within the rainbow from a similar squall which passed my ship, or rather into which the USCGC Yocona entered, when transiting the long track line I’d drawn from Kodiak Island, Alaska, to the northwest tip of Oahu Island, Hawaii.
[Back in the garden], the air once again brightened enough to make the gray lighten to blue, and that blue spread into the full range of visible color. The colors intensified as the cloud moved down the back garden and into the valley. The rest knew that the rainbow had passed through us, and there was something of an uncomfortable shudder about each of us in the understanding. As it grew brighter with every yard and each moment, so too did our collective disposition. We felt washed and freshened like the air the drizzle had cleaned.”
It’s an odd feeling to have the light and mist pass through you. I can only imagine what it must look like for others. And that got me thinking as I was out for a walk the other day with our wheaten terrier, Maggie.
The Rainbow: Both Ominous and Wonderfully Beautiful
A beautiful, bright rainbow — which soon became full and then a full double arc of colors — made us both stop and gaze. I knew it must be a particular experience, as Maggie doesn’t usually pause from her off-lead time to do much beyond sniff (everything) and try to play with any other dog she meets.
There were heavy clouds all around where the colors bent over the harbor. There were heavy bands of showers that danced over the water this way and that. There was a beauty where the rainbow streaked the sky, and an oddness to where it appeared to touch the earth.
From where we stood, that place where the colors met the ground looked both ominous and wonderfully beautiful. It looked foreboding, but also somewhat peaceful. The scene didn’t look at all like what I had experienced “inside” the rainbows.
And living inside multiple sclerosis (MS) isn’t like what it looks like from the outside either.
MS: Endless Black Clouds? Or Endless Free Time?
Some may look at our lot and see only the black clouds and rain. To them, our lives must be some form of hell, constantly battered by the storms of disease and depression. They see the bands of showers that swirl around us and can’t imagine much in the way of positive to be experienced.
Others may see the bright colors of “I wish I could take a nap every day” and “must be nice to not have to work.” Oh, the joys that we must experience because our battles are unseen to people who look upon a life with MS only as “not as bad as … ” They see some land of Oz in our storm. Oz was as much a dream for Dorothy and Toto as such a stress-free life these people imagine MS to be for Trevis and Maggie.
Neither of these views is 100 percent incorrect, but they are far more wrong than they are right.
The MS Rainbow: Muted, Damp, but Not Joyless
Our lives inside the MS rainbow are neither as bad as some may assume, nor are they as easy as others project. Well, not all of the time, at least.
Ours is an existence in an “other” place. A space where time is a little bit skewed. Where the sunshine other people experience is muted but not completely blocked out. It’s damp, but it’s not always lashing rain either.
Life with multiple sclerosis has a sense of wonder and awe as well as trepidation and fear.
I’d say that living with this chronic, incurable disease is weird, but we discourage people from using that word when they come to visit and compare their life at home with how the Irish do things. We ask them to simply observe things as “different” from how they are at home.
And that’s it, isn’t it?
Life inside the MS rainbow isn’t worse or better or weird … it’s just different. But it’s our lives.
Cheers,
Trevis
