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 email@example.comHere 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.
There have been some surprises along the way. Friends and family have surprised me. For the good and the bad. People show their true colors and character in times of crisis. I have been pleasantly surprised by some of my friends and devastated by others.
I’ve learned a lot about the medical world as well. Primarily, like what the word neurologist is. That was a fun lesson to learn. Doctors have surprised me as well. I thought all doctors were good and kind and had good intentions… not so. Doctors are people too, and some can be assholes. Right, Dr Scelsa? Some can be angels. Right, Dr.Siddique? Medical insurance has been a fun ride too. I did not know what the word “deductible” was before ALS… I do now.
I’m not afraid to die. I believe in God. I believe I’m going to heaven. And I have plans. First up, I’m going to save every child that is being or physically or mentally abused. Secondly, I will watch over my friends and family. Selected friends and family. Thirdly, I will float through every gorgeous old apartment in Paris and look at all their stuff. Lastly, I will watch all of my friends have sex. They’ve asked me not to, but I’m going to. I am also going to fly and smoke cigarettes.
What have I learned from all this? Is there some great moral to my story? Trust me, if I had a choice I would take it all back and put myself in that apartment in New York with my daughter. But I can’t take this journey back and to tell you the truth, it’s not that bad. I have learned more in the past three years than I have in my entire life. I have accepted my fate and like my Arabic tattoo says, “and so it is.”