Sunday, July 14, 2013

On Memories

"I remember everything!"

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 happened 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.
I, 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.

Sometimes, 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. 

Later,  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.

Often, I 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. 

I 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 24 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.


  1. Beautiful Post. Laurel, you so often are able to find the positive side of things and express them so eloquantly. You are right, we are both so lucky that we weren't this sick as children. When I see/hear something about a child with M.E. I cry every single time. The bravery and courage it must take to live childhood sick....I can't fathom it....You write "and might someday be again" I hope this for you SO much.

  2. Thank you, Gail. I hope the same for you someday!!

  3. Hi Laurel, I wrote a comment on your blog but had a hard time having it come through. Decided to message you and tell you how much I enjoyed your I always do. Your spirit flies out in your writing and touches us who read it and changes us. You create so much life within your circumstances and it gives hope. I think a lot about what I did within my mind when I was bed bound and hardly moving...It is a universe to be explored and I think if we discover this we become mobile in a new non-physical way. Your memory sounds like an amazing world filled with adventures. Thank you for continuing to write and share it because your writing adds to my life and inspires my own thoughts. Much love to you Laurel and gratitude, Kerry

    1. Kerry, I posted your comment and kind words. You always say such beautiful things! Thank you and much love to you.

  4. Another beautiful and amazing post. Like your fiancee Jim, I have both long and short term memory loss. I do remember key points of childhood, college, travel etc...but so much is lost. I remember so little of my children being young, so it is especially fun when they remind me of their antics in our big old farmhouse in NH.

    I am struggling with my young son having ME/CFS/FM...only the FM diagnoses at this point. 26...started at 20, is WAY tooo young. Way too young. My heart goes out to all of you who got ill at such a young age!!!!!

    1. Thank you, Marian. So sorry to hear about your son. It is so sad when anyone gets stricken with this disease, but especially the young. You are both in my thoughts! Sending you much love.

  5. I wish I could tell you how often I find myself in my own memory wandering down Glass Factory Road with you on our way to the store.

    1. So many memories on that little road! :) xoxo