The following is the text of
a reading I gave on the campus of
Western State Colorado University.
I AM NOT MY
LEGS
I am not my legs. When I use a cane,
a wheelchair, a scooter, when my legs fail with no warning, and I get the
opportunity to contemplate the sudden, alarming closeness of the tile floor in
the kitchen or the ragged gravel of my driveway, that’s the phrase that keeps
running through my mind: I am not my legs. It’s a mantra that reeks of
desperation, but it’s the one that works for me.
Of course, what I’m really telling
myself is that I am not my disease, that I’m not – won’t – be defined by it. It’s part of me, part of my story, but
it’s one color, not the whole painting. And believe it or not, much of what I
feel and think about my disease has to do with what I believe it means to be a
writer, a novelist, a poet. What it means to be a storyteller.
Let’s start with some history. In
2005, a year before my youngest son was born, I was diagnosed with primary
progressive multiple sclerosis. Unlike the more common form of MS, which is
called relapsing-remitting, my disease does not and will not remit. It will not
relent. It is an autoimmune disease that attacks the myelin sheath of nerves,
breaking it down much like stripping the plastic covering off a piece of wire. My
MRI that year showed three small lesions in my brain. My MRI this year, ten
years later, showed multiple lesions, including an active one about the size of
a large marble.
I’m one of the lucky ones. My
symptoms began, we think, in about 1999, but it wasn’t until 2003 that they got
bad enough for me to seek medical help. It took two years to get a diagnosis
and another year after that to get to what’s called a plateau – my disease
continued, but the symptoms were under control enough that I was able to rebuild
some of the muscle atrophy and leg function. This is an illusion. Muscle power
overcoming the nervous system on the micro level, but on the macro level, the
big picture is undeniable: the damage to my brain, each and every lesion, is
permanent. And the reality of my disease is simple: there is no treatment and
no cure. The only things I can do are take medications for the symptoms and
throw Hail Mary passes involving chiropractic care, acupuncture, diet
modifications, and nutrition supplements – all in the hopes of buying the one
thing we all want: more time.
Here are some basics. Ten years have
passed since I was diagnosed. 80% of people with primary progressive MS are
dead within 20 years of diagnosis. 90% are dead by age 65. Death often comes in
the form of pneumonia – immobility is a perfect breeding ground for illness,
and so its victims die, sick and drowning, unable to move, often blind, unable
to speak. Not pretty, right? And seriously, how much money would you bet on an 80/20
or 90/10 shot? I wanted to die with a headline obituary that read: Eaten by
Dragons, Killed While Saving Entire World from the Forces of Darkness, or (my
favorite) Came and Went at the Same Time While Bedding 23-Year-Old Twin Playboy
Bunnies. Statistically speaking, my end is far more likely to be much less
grand, far less pleasant.
But I am not my legs, not my disease,
and I’m not a data point in a set of statistics.
From 2006 until 2015, I didn’t go
back to the neurologist. If denial is not just a river in Egypt, it’s safe to
say I was hip deep and wading deeper. I took the medications to control my
symptoms, and as those symptoms got slowly worse, I ignored them. I blamed them
on getting older or other injuries from a misspent youth. I blamed them on bad
days, which is a sort of mental gymnastics that people with MS do all the time.
When I repeatedly fell in the grocery store or couldn’t control the tremors in
my hands, when my kids noticed that I struggled with the accelerator pedal of
the car, or I simply made excuses not to go somewhere, I blamed it all on other
things. I couldn’t be getting worse, right? After all, it had only been… well,
it had only been. Time blindsides us all.
A few months ago, I moved to a new
primary care provider who said she’d take me on under the condition that I went
to a neurologist again. I agreed because I knew what the neurologist would do
and say. She’d do an exam, run some tests, and tell me everything I already
knew: no treatment, no cure, symptom management, and she’d do all this for the
low, low price of thousands of dollars. But what the hell, right? I hadn’t been
in a long time and perhaps I was
overdue. So I went.
And the first thing she said was,
“What in the blue hell were you thinking waiting years to see a neurologist again?!” My reply was what I just said,
to which she replied, “And how can anyone help you as your disease progresses
if no one sees you?” I shrugged. “I’m holding the line.”
Except I wasn’t holding the line. I’m
not holding the line. There is no line. The line is completely fucking
imaginary. MS is a personal disease, its course individual, and in the case of
the primary progressive form… it is as inexorable as the tides. Her exam
revealed symptoms I didn’t even know I had (like this special one: I can’t
close my eyes and touch my nose, which means random DUI stops will mean deep
trouble). That I have muscle atrophy in all of my extremities. That my reflex
responses are reduced or – in the case of my left arm – pretty much gone. All
that and more before she sent me for
the MRI. Now you know why I didn’t go until someone made me.
And what’s all this got to do with
writing? With being a storyteller? Almost everything. You see, I fundamentally believe
we’re all storytellers. The fact that I’m standing up here tonight, sharing my
work, doesn’t eliminate the fact the every single of one of you, whether you
call yourself a writer or not, is a
storyteller. Scientists
look for dark matter, for what binds the universe together, and I say that when
it comes to human beings of any and every shape, size, and kind, they are
looking in the wrong place. It is story that is the invisible matter that binds
us all together.
Our daily lives are based on story,
and over time, we come to share common stories across a wide spectrum of human
diversity and experience. Don’t believe me? Let’s test it out. I’ll sing a
couple of lines from a song and if you know the song or the next line, raise
your hand: “I don't need you to worry for me cause I'm alright / I don't want
you to tell me it's time to come home.” See what I mean? That Billy Joel song
first appeared in 1978. There are probably people in this room who don’t
remember 1978, maybe weren’t even born in 1978, and yet there’s a song – a
story song – most of us share. How about this one, “I got sunshine, on a cloudy
day…” The Temptations, 1965. It’s not just those specific songs, either, since
I could probably find one from every year dating back longer than anyone in
this room has been alive and we’d get the same results.
Let me offer a bit more bit of proof
before I tie all this together in one of those neat little writerly bows. If
you recognize any of the following quotations, raise your hand, and please keep
it raised. If you hear more than one you recognize, raise them both and keep
them up:
1.
“The
more that you read, the more things you will know. The more that you learn, the
more places you’ll go.”
2.
“So,
they went off together. But wherever they go, and whatever happens to them on
the way, in that enchanted place on the top of the Forest, a little boy and his
Bear will always be playing.”
3.
“Call
me Ishmael.”
4.
“It
is a truth universally acknowledged, that a single man in possession of a good
fortune, must be in want of a wife.”
5.
“It
was the best of times, it was the worst of times.”
6.
“It
was a pleasure to burn.”
7.
"Tomorrow,
I’ll think of some way to get him back. After all, tomorrow is another
day."
8.
"As you
from crimes would pardoned be, Let your indulgence set me
free."
9.
“Into the valley
of Death / Rode the six hundred.”
10.
“Once upon a
midnight dreary, while I pondered weak and weary.”
11.
“But I have
promises to keep / And miles to go before I sleep.”
12.
“Do not go
gentle into that good night.”
How many people do we have? Everyone? Good. It only took a dozen examples,
first lines, last lines, famous lines from a children’s book, a novel or a bit
of a poem to bring us all together. To prove we are all sharing in the stories
of our world and ultimately our lives – because our lives are the source, the
well from which all the songs, poems, and stories are drawn.
Look around you. Do it right now. You probably don’t know everybody in
the room, at least not well, but yet all of you share story in some way or
another. Your politics, religion, sexual preference, gender identity,
ethnicity, class, place in the bureaucracy, spot on the hierarchical flow chart
or lack thereof… all of it fades before the power of story.
The great science fiction writer Isaac Asimov was once asked what he
would do if he was told he only had six months to live. He replied, “Type
faster.” That’s pretty good advice, whether you have ten days or ten years or a
hundred. Every day, every minute, every experience adds to the well that you
can draw from.
So, here’s what I know: I started publishing professionally, which is to
say, someone paid me a professional rate for my writing (not copies of a
magazine no one’s ever heard of) in 1995. That was a mere twenty years ago. It
was early in my first marriage and my eldest daughter, who’s in college now,
hadn’t even been born yet. In that time period, I’ve written and sold more than
thirty novels, thirty-six short stories, published a chapbook collection of
poetry, two collections of short fiction, edited more than a dozen anthology
titles, and edited (in all seriousness) hundreds of novels. I’ve contributed,
in my own way, to this idea I have that we’re all storytellers, that we’re all
sharing our stories in our own way. Not bad for twenty years, but here’s the
thing that sometimes keeps me awake at night as much as the muscle spasms in my
legs ever do: no one sitting in this room can probably quote one line from
anything I’ve written.
That’s okay. Just because I wrote it and someone bought it and published
it, doesn’t mean it was any good, let alone quotable. But still… I ache for
that one. The one story or novel that will ensure that long after my time is up
– whenever it’s up – my kids will still be collecting royalty payments. You
know, until recently, we all believed that Harper Lee only wrote one novel and
has been living pretty well on it ever since.
I don’t want to be Harper Lee, or J.K. Rowling, or Stephen King. I still
want to be me – just with one crackerjack book or story that resonates so well
with people, it will be in print when my great-grandchildren are going to high
school. And if we are all bound together by story, isn’t the opposite of this our
shared fear that our story will not last, or perhaps worse: that we will
outlast our own story.
Now, here’s the thing – that writerly bow I promised you. I am not my
legs, I am not my symptoms. I am not my disease. And you are not your legs, your eyes – no matter how sparkling, or your
smile – no matter how bright. If you struggle with an illness, that is not you.
You are not defined by your physicality or mobility or illness or health. You
are not defined by your wealth – or lack thereof. You are not your house, your
car, or your job. These are just colors. You are your story. Whatever it is,
for however long it may last, for whoever will listen.
Share it – with friends, family, children, grandchildren, strangers at
the coffee shop, people at the bar you find interesting or attractive or both,
colleagues and peers that you admire, and those that you strongly dislike as
well. Do this because we’ve already proven that the boundaries of story do not
exist. Write it down, talk it out, sing it if you like, but share it. Craft a
sculpture, which is a moment of a story frozen in time, paint a picture, which
is a window into a story, compose a song or a sonnet, keep journals for your
children, take pictures – but not selfies – because you will probably remember
your part of the story, anyway. No matter the form or the medium, find a way,
any way, to capture your story, and share it with someone, someday. Not because
you will be quotable later, not because you will be remembered globally or even
locally, but because the value of a story is in its sharing, in its power to
bring people together, across any and all boundaries, for even the briefest of
moments.
You are your story, and our world is made entirely of story. Stories
written out on paper or published in magazines and books. Stories read at
poetry readings with snapping fingers in place of clapping and berets that
should never be worn except by really cute girls with bohemian tattoos. Stories
revealed in songs on the radio or around the campfire. Stories shouted at the
cold stars or cried into the wet grass next to a headstone. Stories whispered
to small children at bedtime. Stories shared at the water fountain, in offices,
in hallways, in classrooms and boardrooms. Stories giggled in the dark of a
bedroom with a lover or a spouse. Stories of grand, fictional imagination or
the most common of events, of love and hate, happiness and sorrow, sex and
death. There is no subject, real or imagined, that cannot be encompassed by the
power of story. The medium of words is my way, but it doesn’t have to be your
way so long as you understand that finding the medium of your story and sharing
it is what matters.
So, we end where we began. I am not my legs. I am my story. There will
come a time, I know, that this body will fail me. Sooner rather than later. My
disease will raise the tides hurricane high and they will not recede and the
words of the stories I want to tell will elude me – or worse, the words will be
there, but I will not be able to get them out. And yes, should you wonder, I am
terrified of losing the precious gift of being able to tell my stories. But your gift, most hopefully, will not. Story is not just my gift, but a
gift belonging to everyone sitting in this room, everyone you know… everyone
you don’t. You do not know how much time you have with this gift, but to ignore
it is a disservice to yourself, your family, your community, and ultimately,
your world.
And perhaps some of you are sitting there, wondering silently, “Why,
Russell, in the name of God would you share this depressing crap with us?” And
my answer is simple: it is my gentle reminder to all of you: type faster.
You are your story. Share it.
© 2015, Russell
Davis. Please do not reprint this without express, written permission. Linking to
this blog post is, of course, fine.
