“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!
Peace,
Marc
Billy Joel’s
Keeping the Faith
http://www.youtube.com/watch?v=U2pU0QJkMck
