“The backward glance is distorted by the lens of the present….Memory distorts memory. Is all memory simply the application of narrative to past events, and is it only human and coherent to do that work?” Dana Spiotta, Stone, Arabia
When I read the novel Stone, Arabia last year, some passages about memory really grabbed me. The author remarked on how we can never actually remember anything perfectly. Because the narrator’s mother suffers from dementia, she is trying to piece together fragments from her own past. She appears to be saying that we are taking experiences and creating narratives, using words to describe them. To me, that is part of why no two people can ever remember anything exactly the same way. We each possess different vocabularies, histories, and contexts for what we see, hear, and taste. One person’s cold can be another’s hot even when the temperature is 60 degrees.
One of the more complicated aspects of coping with multiple sclerosis is that it can be tricky to put into words precisely what we are encountering. After all, so much of what we are forced to face comes down to the loss of things we once had in the past: of vision, touch, mobility, taste, and so on. To those of us in the know, we have an elemental sense of what is happening, but finding the right words to describe this experience can be woefully elusive. I suppose it can be a little like trying to describe what it is like to grow old. But unless you are going through it, you don’t really know what the experience is like. Mere words can be insufficient to describe what it feels like to live with the disease. Which is part of why the MS Society holds “you look so well” support groups. To the observing eye, there are no symptoms, nothing to put into words. But we know better, don’t we? Worse case scenario: on the inside we can actually be going through hell.
So when we try to describe our symptoms to our doctors in a way that accurately represents the disease, we use words in relation to what we believe “normal” used to be. Beyond the physical aspects of the disease, there are the emotional ones, too: the constant readjustments of our expectations. How do we put into words the aspects of the disease one cannot touch or see: the bitterness, the anger, the frustration that can be a regular part of living with MS?
This most often arises from the “not knowing” what our futures will hold. Unless we are in therapy (been there, done that), we are left to ponder the future of our fates in relation to our pasts. We can have conversations, the words circulating around in our heads, about what we once had, where we are now, and what the future holds for us. Ah, yes, the “future.” I don’t have these thoughts all the time, mind you, but I feel we MSers have them more than “regular” folks, mainly because the future is so uncertain. In what condition will I find myself next year, in five years, or ten years? These thoughts can be quite daunting, even if the future of research and pharmacology looks brighter and brighter.
What are my limitations? How long will I be able to walk to work, ride my bike, throw a ball around with my kids. I never thought him much of a philosopher, but Billy Joel sang some meaningful words back in the day, “the good ole days weren’t always good and tomorrow’s ain't as bad as it seems.”
We shouldn’t harp on what we’ve lost and try not to fret about what is going to happen tomorrow. We’ve got to live in the moment and make the best of the time and situations we still have. An old Latin phrase, carpe diem, works best for me: seize the day!
Have a good couple of weeks. Stay cool!
Billy Joel’s Keeping the Faith