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I’m 30 years old. It’s an age I never expected to see. Well, to be
honest, I never really thought about it. I never plan too far in advance
for anything.
When other girls talked about their dream weddings, I’d have to admit I
hadn’t even planned what I was doing next weekend, let alone something
that might happen, maybe, possibly.
As most of you know, doctors aren’t very optimistic about the life
spans of people with spinal muscular atrophy (SMA). My parents were told
not to expect my sister, Katie, or me to live past 3 years old. So 30
became this mythical idea to us.
Oh, it was never anything morbid. We never sat around and planned death
(well, except for certain funeral details, but I’ll get to that later).
Instead, we were brought up to enjoy each and every day and let the things
we couldn’t change come as they may. A song in the musical “Rent” puts it
eloquently: “No day but today.” A quote I’ve always liked, from a movie I
seldom admit to watching, “Point of No Return,” sums up how I tackle life:
“I never did mind about the little things.”
Little Things vs.Big Things
For me, survival became a little thing. Worrying about my health and my
future were little things. Why should I focus on little things like how
old I would grow to be, when I had more pressing matters like Brownie
badges to earn and sleepovers to attend? I let the doctors worry about how
old I would grow, and I only saw doctors who thought I might live a
while.
Not that I’m not realistic. When traveling, I’m the one who always adds
in time for bathroom breaks and transit breakdowns. Those are the kinds of
big things that matter in my day and can make huge differences in my daily
life.
Friends say I’m old for my age. I say I was a Girl Scout for too long.
(I still carry matches and a sewing kit with me at all times.)
I let the doctors worry about how
old I would grow. |
I’ve never turned away from surviving. (Well, I was a hormonal teenage
girl, so never is a stretch.) I’ve spent my time trying new things. I’ve
gone on acting auditions, traveled with friends to exotic locales (East
Lansing, Mich.), lived in cities made famous in song.
I’ve never thought of myself as invulnerable. Especially after watching
my sister die in her early teens. I knew how fragile we were medically —
how fragile I am. And, yes, there have been times when I did mind the
little things, such as when Katie died, or when I had hip pain so bad that
even breathing hurt.
But that’s when my friends have been around to whap me upside the head
and remind me that I’ve beaten so many odds already that every day is a
chance at a free spin with life.
The Horsechicks
When I was little I never thought I’d have friends like I have. Even
people I called my best friends I kept at arm’s length because the
wheelchair always became an issue. High school was better, but as any sane
teenager will admit, I didn’t love it.
Then in college I met the Horsechicks of the Apocalypse. We officially
formed eight years ago, though we met three years before that through an
e-mail list about a TV show we all watched called “Forever Knight.” We
shared our love of writing, of cheesy television shows and everything
else.
The Horsechicks have been my rock through college, Mom’s kidney
transplant, employment, unemployment and my health circus. They’ve enabled
me to go on trips I never would have managed on my own.
So, for my 30th birthday in November we decided to pull out all the
stops. Like a winner on the TV show “Survivor,” I’d outlasted doctors’
expectations. The only way to celebrate was to go where gambling on odds
was a way of life. It was time for Las Vegas.
The trip itself was lovely. Southwest Airlines earned our eternal love
by making loading easy and not breaking my chair. The MGM Grand was
comparatively accessible and actually put us in rooms near each other.
Studio 54 at the Grand was fun for people-watching and played music I
loved (though the smoke was a bit thick).
I have fond memories of watching Celli ride a roller coaster that was a
lot faster than we expected. Of dragging Dianne and Lizbet to the Grand
Buffet for Sunday champagne brunch and boggling at how attentive our
server was. Of playing slots with Perri whenever we felt we had too much
folding cash on us.
We didn’t mind the little things, like my health. But of course, big
things arose, such as personality conflicts. Eight women, two rooms — not
a smart equation. It was great! (If you consider watching some friends
leave a room whenever another entered great.) I was shaking in anger by
the time I returned from my vacation.
So, why was this great? Because the little things really didn’t matter.
This had nothing to do with my health and disability. This had to do with
normal, boring disagreements. The Horsechicks still are dealing with the
aftermath of these big things, but the problems are controllable.
Keeping Up With the Big Things
I’m not so silly as to think that since I hit 30, I’ll be fine from now
on. The Horsechicks know I don’t have the stamina that some of them do
(even if I was the last to leave Studio 54).
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The
Horsechicks (and a hubby) at the Excalibur
Hotel and Casino, Las Vegas.
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Like my parents, they know my wishes in certain health situations and
when I die. They may not follow all my wishes — Val refuses to gnash her
teeth during the Wailing and Gnashing of Teeth moment of my memorial
service, something to do with her ortho-dontia.
But they know that we should enjoy every moment. Well, most moments.
When we don’t want to kill each other. (We are friends, after all.)
So, I’m 30. I’ll never be the type of person who dreams about my
future. I have no preconceived ideas about my dream wedding or where I’ll
be in 10 years. Right now I’m just trying to keep up with the big things
in life: whether I’ll see “Rent” again in theaters and whether I’ll work
all week this week. I refuse to let myself get caught up in things I can’t
control.
Abby Albrecht, a Northern California freelance
writer and Web designer, is also known as the Stable
Girl for the Horsechicks of the Apocalypse. |