Photo Illustrations by Martin O’Neill; Photograph Courtesy of the Author
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Too Late to Die Young
By Harriet McBryde Johnson, March & April 2005
She didn’t expect to live past her teens. What happens when a dying child doesn’t?
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I'm three or four years old. I'm sitting on the living
room floor, playing with dolls. I look up at the TV and see a
little boy. He's sitting on the floor, playing with toy
soldiers. Then he's in Little League; he stumbles on his way
to first base. He visits a doctor. His parents are sad. He's
in a wheelchair. Then a bed. Then I see the toy soldiers. No boy.
An unseen narrator says, "Little Billy's toy soldiers
have lost their general." It's a commercial for the
Muscular Dystrophy Association. As the narrator makes the pitch,
a realization comes to me: I will die.
Is it really one of my earliest memories? Or was it manufactured
by my imagination? I don't suppose it matters. Either way, it
was my truth. I'm a little girl who knows she will die, but I
don't say anything. Somehow my mother guesses. "That
boy," she says, "has a different kind of muscular
dystrophy. Girls don't get it." Maybe, I think, but he
looks a lot like me. And pretty soon I see little girls on the
telethon and hear that girls too have "killer
diseases." I don't know the word, but I figure my mother
is in denial.
By the time I am five, I think of myself as a dying child.
I've been sick a lot. There is some discussion before my
parents decide to send me to kindergarten. I am glad they do.
When I die, I think, I might as well die a kindergartner.
The death sentence hangs over my childhood like a cloud. Beneath
the cloud, I live a happy child's life. Why not? I am a
well-tended daughter of graduate students. My sister generally
tolerates me with good grace; three brothers come along for me to
boss. The TV regularly brings me Dick Van Dyke, Andy Griffith,
and Bullwinkle, and one person in a wheelchair, Dr. Gillespie,
who fulminates and barks orders at handsome Dr. Kildare. I soak
up the sounds of Joan Baez and Los Hermanos de Vera Cruz. To get
fattened up, I'm given black beans and fried bananas. To fry
my brain, Alice in Wonderland. All these things are great
pleasures, then and now. But then and now, life has a certain
edge. I know it will not last. When I am 13, I read Orwell's
1984 and calculate how old I'll be then. No way, I think. I
go to school and study hard, but I have no fantasies of a future.
I study because studying, too, is a pleasure. And besides, I
think, when I die I might as well die educated.
In a slow dawning, I realize death is for normal people, too. I
am personally acquainted with only a few dead people, but there
are lots of them around—they live in family stories. At our
Thanksgiving table, my mother remembers Great-Aunt Harriet's
hot rolls and the time rich Uncle Oscar found a pearl in his
oysters. Both the rich uncle and the hospitable aunt died long
before I was born. As they died, so, I infer, everyone at our
table will die, too. I decide to be discreet and live quietly
among normal people. No need to trouble them with details.
I knew what was bothering me: my plan to die young wasn't
working out. What would I do now?
I start being vague about my medical diagnosis. Rather than
owning to an exact medical diagnosis, I say I have "a muscle
disease." I don't want others to connect me with the
dying people on the telethon. I figure if I reveal too much,
they'll jump to the wrong conclusion. They'll define me
as one of the Undead, an unnatural creature, not really alive but
feeding on the lifeblood of others. Or, alternatively,
they'll make me a pity object, one of Jerry's Kids.
I study, play, work, find a place in a family and a community,
and enjoy the many delights that continue to fall on me. As my
body continues to deteriorate, my life looks more and more
normal. At 25 I leave the cozy comfort of home to go to law
school. I figure, I'll be 27 when I finish; if I go now I can
probably practice for a couple of years. By this time, the
thought is almost subconscious: when I die I might as well die a
lawyer.
I've just turned 30. I've been lolling in bed for nearly
three weeks; I say I've strained my neck, but really it's
major depression. Just before my birthday, my mother had brain
surgery; she's come through it beautifully, but I'm
terrified to think I could actually outlive my parents. I am
further set adrift by the sudden death of the crazy German doctor
who nursed me with pea soup and sausages when I refused to go to
the hospital with pneumonia. My thoughts race by, but I manage to
grab them and take a look. I find that I'm bonkers but
rational. I know what's bothering me: my plan to die young
hasn't worked out. What do I do now? My thoughts take on the
structure of a song with a repeated chorus: it's too late to
die young.
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Eventually I go back to work and all of life's routines, but
some things have changed. I went to bed agnostic and have come
out atheist. When the next medical crisis comes, I find I can
hear the death sentence without dread. The lesson of little Billy
and his toy soldiers has gone from my head to a deeper place. I
have taken death into my heart.
I reconsider the messages of my childhood and decide I have been
the victim of a fraud. Sure, I am mortal. Yes, I will die. But I
have never been terminally ill the way I was led to believe. I
study the telethon. It spews out the same old
messages—"killer disease," "life ebbing
away," "before it's too late." As I hear the
death sentence pronounced on another generation of children, I
wonder how many have actually been killed by the predictions. How
many gave up breathing for want of a doctor crazy enough to see
them through? How many have lived and died without learning to
value their own lives? I join the telethon protest and oppose
physician-assisted suicide. I want people to know our culture is
playing fast and loose with the facts. While anyone may die
young, it's not something you can count on. You have to be
prepared to survive.
Among allies in the disability-rights movement, I start hearing
things I don't expect. "We're not dying," some
comrades say. "We're disabled, not terminally ill."
Even in the movement, denial rules. I decide to embrace the death
sentence. No need to fear it; no need to hasten it. Mortality is
something all people share, a unifying force. Every life, whether
long or short, is a treasure of infinite value. These things are
true, I figure, and it's my job to say so. When I die I might
as well die honest.
I'm 39. A man has come to my law office for a will. He has
advanced AIDS. I start explaining the options: "When you
die…" I'm horrified to realize I've dropped
the polite circumlocutions and make a quick substitution.
"When your will takes effect…"
I'm flustered. He looks at me with a wise, weary smile.
"It's okay," he says. "I know what's going
to happen. That's why I'm here."
He has unlocked the door. We can get real.
"So explain what happens when I croak," he says. By the
time the final documents come off the printer, we're laughing
so hard I wonder what the lawyer in the next office will think.
"I can't tell you," he says, "how great it is
to work with someone who can deal with this stuff without
freaking out. Most people are so…compassionate."
We shake hands. "It's been my pleasure," I tell
him. It really has.
Now I am 47 years old, unexpectedly middle-aged. My disease
limits me more and more. But the progression has been slow,
downright gentle. If the next 20 years are like the last,
I'll be old. It certainly could happen.
Death remains mysterious. How can I imagine a world without me?
How have I survived so many friends, so many family members, so
many heroes? Why can't Mel Brooks live forever? Death is
natural and necessary, but not just. It is a random force of
nature; survival is equally accidental. Each loss is an occasion
to remember that survival is a gift. I owe it to others to make
good use of my time. When I die, I might as well die alive.
Excerpted from the memoir
Too Late to Die Young: Nearly True Tales From a Life by
Harriet McBryde Johnson. © 2005 by Harriet McBryde Johnson.
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