Soooo, for the past few years I have been thinking about
writing a book. A book about this little journey with ALS that I am on. I have
written about 20 chapters. Sometimes I think, “Why would anyone want to read this
crap.” But sometimes I also think, “Maybe someone should read this.” I decided
to write up a little book treatment and get everyone’s opinion. So here we are.
I would like your opinion. Your honest opinion... You can email me at havesomedecorum@gmail.com
Here it is…
“And so it is.”
Treatment.
It’s 2010. I’m living in New York in my dream apartment. I
just started my dream job. My daughter was happy at her perfect all-girls
private school. I had money in the bank. My boyfriend came to visit often. I
was even getting along with my stupid parents. I had friends. Lots of friends,
great friends. I was pretty, I was thin and, and I had great hair. And then
suddenly the rug was pulled out from underneath me. I was going to die.
Literally. I have ALS. Not only was I going to die. But before I died, my body
would shut down on me bit by bit, I would be paralyzed and my lungs would fail
me. The worst part is that my mind would be fresh as a daisy and I would
experience every inch of the hell that was to come my way.
What’s a girl to do? A girl gets herself to Paris, quick. I
had to escape my reality. In doing so, I found myself. I learned how to deal
with my fate. How did I do that? I went to church, old churches, real churches.
Not First and Calvary Presbyterian church of Springfield, Missouri. I needed
the real deal. I visited every church I could. But not Notre Dame. The line was
too long. God and I needed to talk. Possibly argue. I finally found one church
where I think God answered me. I knew he wasn’t going to cure me, but I
discovered that he was going to save me. He was going to show me how to get
through this with a little bit of grace, a little bit of dignity and a little
bit of time.
What was I going to do with the time that I had left? I
didn’t know. I’ve always been a fly by the seat of my pants kind of girl. I
wasn’t going to change. I wasn’t going to become somebody else. I only know how
to be me. And in being me, sometimes it’s fun, sometimes it’s funny, sometimes
it’s sad, and sometimes it’s ugly. A nun told me that I needed to leave a
legacy. I didn’t know what that meant. I didn’t know how to do that. I didn’t
realize until two years later that my legacy was my daughter, Grace. With the
time that I had I left, I needed to get Grace ready. I needed to get her ready
for life without me. Mentally, spiritually, physically and financially.
What do they say? A funny thing happened on the way to the
bank? Well, a funny thing happened on the way to the bank for me. While working
on my “legacy” a funny thing happened, lots of funny things. It’s called life.
It just so happens that my life is funny. Even with ALS. Or maybe it’s because
I choose to make it funny. Like when the nurse needed to take my temperature
and accidentally put the thermometer in the wrong spot. That’s funny. Accidentally,
“motor boating” my caregiver is funny. Singing Anne Murray’s song, “You Needed
Me,” at the top of my weak little lungs in the car, while my French husband
watched in horror is funny. Ignoring a phone call from my daughter while doing
so is even funnier...
On the other end of funny is sadness. Extreme sadness. Life
altering, I don’t trust God anymore, excruciating sadness. I’m not sad for myself.
I’m sad for others. Try telling your child that you’re going to die. That she
won’t have a mommy. That I won’t be there for the happy times… when she
graduates, when she gets married, or has a baby. Worse, I won’t be there when
she needs me. I won’t be there when a boyfriend breaks up with her and she’s
crying, when she doesn’t get that job, or when a friend betrays her. This is
what kills me. I’m sad for my friends too. Try telling your best friend that
the laughter’s going to stop. Try telling your husband that all the plans you
made for when you are old, he would now have to do by himself. This is what
kills me. This is what makes me cry in the dark, scary hours of the night.