As a little girl, I was known to frequently make this rather bold (and no doubt equally annoying) proclamation. There was nothing in my life, I proudly
declared, that I didn't remember. This
drove my older brother, ever pragmatic, a little bonkers. "You can't
remember everything," he'd tell me. "It's impossible."
My mother once tried to ease his frustrations by
reminding him of the fact that I was only five years old. Not much had
to me in my life yet. I didn't have all that much to remember.
Memory loss, particularly in terms of short-term memory, is one of the many symptoms those with myalgic encephalomyelitis often experience. Fortunately, it's not
one of the symptoms that has thus far plagued me. Despite suffering severely from other cognitive difficulties as a result of ME, my memory remains strong.
Sometimes I can't help but wonder if part of the reason I can still recall so much from my past is the same reason suggested to me as to why I could recall so much from my childhood. That is, very little has
happened to me in the last many years. While my friends and family have
gone on with their lives, experiencing a variety of new and exciting
things, my own life has essentially remained stagnant. As a result, I am forced to spend much more time in my memories than others typically do.
A few months ago, I listened to the audio version of Roger Ebert's moving memoir, Life Itself.
As most know, Ebert lost his ability to eat and speak after the
return of his cancer required surgery to remove his jaw. For a time, he was confined to his bed, unable to
communicate. He writes, "In the days of my illness, unable to walk, I started
to walk around London in my mind. ...I had nothing to do but lie in bed
with my memories." Ebert later goes on to say:
In these years after my illness, when I can no
longer speak and am set aside from the daily flow, I live more in my
memory and discover that a great many things are safely stored away. It
all seems still to be in there somewhere. …You find a moment from your
past, undisturbed ever since, still vivid, surprising you.
too, can sometimes get lost in memories. I close my eyes and I am seven
years old again, riding my bike with neighborhood friends to the local
convenient store, where we purchase a chocolate bar or ice cream treat
for 25 cents each. I can still see the colorful display of candy and
treats, momentarily overwhelming me with all the possible choices.
I close my eyes and find myself returning to Boston, walking through the quaint
and cobblestone streets of Beacon Hill, then down through the gardens
and past the swan boats of the Commons, and finally over to Newbury
Street, which always comes alive at nightfall.
I am back in London. Then Paris. Venice. San Fransisco. New
Orleans. Disney World. The beaches of Hawaii. Or any number of the many places I was
fortunate enough to travel to when I was healthy.
relive the smaller moments of life too. I close my eyes and I remember
what it was like to wake up and freely move from my bed. To take a
shower, walk to the kitchen, cut up some fruit and make myself a
simple bowl of cereal.
I close my eyes and I am anywhere in past time, living life as a healthy person again.
This is not to say I live in my memories, of course. It's only to say that I am grateful for them.
got sick when I was very young -- just a few years out of college.
But I am lucky that I had so many adventures and experiences in those
years that I can now reflect back upon and relive in my mind. Some
people with this illness aren't so fortunate in that regard.
I think of
other sufferers like Emily Collingridge , who first fell ill with ME when she was just six years old. She spent virtually her entire life sick, and for much of that time, Emily was fully housebound and, eventually, completely confined to her bed.
Just try to
imagine that for a moment, especially if you are someone who has been blessed enough to have a life free of disease. Imagine what it would
be like to get sick as a very small child, so that almost all of your
memories from your past are of being horribly ill. Emily, who died from complications related to her illness when she was just 30 years old, likely had very few recollections of what it was like to be healthy.
And then there are those like my fiance, who developed ME at the age of 19, and who actually does experience the symptom
of memory loss. While it's primarily the short-term that Jim struggles to recall, his long-term memory is also affected. He often expresses frustration at not being able to
remember many details of the few years he spent growing up in France.
Or of his time in high school, or college, or getting his PhD. He
remembers the core of his life, of course, but the memories are
fragmented, with large gaps in between.
Memories are an integral part of how we define ourselves. They are a scattering of our most precious and important moments that, strung together, create within us a story we can then tell each other about who we are. I can't imagine what I'd do if I didn't have those memories to look back upon and remind me of who I was when I was healthy. They provide me not just with glimpses of what once was, but of what may someday be again.
And so I close my eyes once more, and I choose a memory. Today, I return to the Grand Canyon and try to remember what it was like to stand at the edge of something so majestic. In doing so, my memory also becomes my wish. Someday, I hope, I will again be standing at the edge of something remarkable, and I'll no longer have such a need to look back.