The Book, AND SO IT IS

 

Well, today is the day. The day I share with you another part of my life… A part that you have not seen. I feel like I have been holding out on you but I wanted to save this particular moment in my life for a very special reason… The Book.

 

I know that I have been talking about his stupid book forever but I have finally finished it. I started writing the book four years ago because I wanted Gracie to have something solid to remember this experience. But now, the book has morphed into something else. How could it not? Four years ago I was a different person… Sort of. Having ALS is a tricky disease… You keep who you were but a stranger emerges and you have to learn how to cohabitate. Sometimes you like your new roommate, sometimes you don't. Sometimes this new person teaches you a thing or two.

 

This book that I wrote, AND SO IT IS, is different from the blog. It is tougher, sadder, and sometimes surprising. It has taken me all of these years to write because every time I start to proofread a chapter, I start crying like a baby and then I stop for a few months to fucking collect myself because life with ALS is so brutal that is it surreal.

 

So, I am warning you that this is not an easy read but I think in the end it is an important read. Not to be full of myself but I think that a lesson or two can be learned. What do I mean? I mean that ALS schools you about who you are, who you were and who you need to be. These are lessons that I did not necessarily want to learn. I was perfectly happy going about my ignorant existence before ALS. However, I did not have a choice but to learn how to adapt to my new life.

 

AND SO IT IS is a big book, almost 200 pages. It is not about decorating, it is not about cooking, it is not about annoying French people, it is about the hardcore past six years of my life. The book starts with the lead up to my diagnosis while I was happily living my life in New York and ends with some brutal honesty and what I think my legacy is. The 26 chapters delve into every aspect of my life that I have not really discussed in the blog, if you can believe it.

 

Yes, I discuss my childhood. Yes, I discuss my relationship with my family. Yes, I discuss my past. Yes, I discuss my feelings and I also answer all of your questions, however tough they may be, including your sex questions. I have not kept anything from you because I am all about transparency, even though I hate to use that word but it is the only way that we are going to learn from this train wreck called ALS.

 

By nature, I am an optimistic person and I think that this trait has served me and saved me but there have been times of utter despair so dark that I do not know how I came out of it… Maybe I am still in it. Who knows? All I know is that I can say that I have survived ALS. I know that that may sound strange, but let me explain…

 

ALS did not take me before I had the time to create memories with Gracie and David, reach milestones, tell my friends that I love them, accomplish a thing or two, prepare for the future, and learn life lessons. I hope the book allows all of you to take what I have learned and incorporate it into your own lives.

 

I could tell you more about the book but I feel like I should just shut up and let you experience the book on your own. Let me warn you, you are going to cry and laugh and have some moments of clarity regarding life… The good, the bad and the ugly. There are some definite surprises in the book like Chapter 19. Okay, okay, I will shut up.

 

So, here we go, the book, AND SO IT IS. There are three versions… A giant hardback coffee table version, a softback version and an ebook version.

 

For the large coffee table version, CLICK HERE.

 

For the softback version, CLICK HERE.

 

For the ebook version, CLICK HERE.

 

As always, a portion of the proceeds will go towards ALS research.

 

I hope you like it.

Should I…?

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.

 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.”