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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
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.”


  1. Beautifully written. I'd buy the book. I think you temper the reality with a good dose of humour!

  2. Brilliant Ellie ! As Nike would say - Just Do It ! Big love , Adrienne

  3. Beautiful, funny, brilliant. You definitely need to write this book. I am in awe of you and your outlook.

  4. I'm a little late to this - I just discovered you a few days ago through Heather's link on Habitually Chic and have been reading your back posts. I just subscribed to your blog and YES, I think you should write a book for several reasons:

    1) You have a desire to create a legacy and this book will add to that.
    2) While Grace will have your blogposts to re-read in the future, this will be one cohesive narrative. She'll take away different things from it in her 30s than she will in her 40s, 50s, etc. - think of it as a gift that will keep giving to the most important person in your life.
    3) You're a damn good writer. One of my professional duties is editing content intended to promote my firm and I wince at 80% of the material I see on a daily basis. On behalf of everyone who enjoys well-written material, I beg you to provide us with something we already know will be worth our time!
    4) This could be your single-handed contribution to raising awareness of ALS as opposed to fundraising or speaking at events. Plus, it could also be a way for family members and friends of someone diagnosed with ALS to learn more about it in a positive way. They can either learn their loved one is in potential danger of being dropped off the toilet by their caregiver someday from a dry, factual website or they can laugh about it and make a mental note to ensure that only beefcakes (where available) are hired for this duty. Consider it a contribution to humanity with a bow on top!
    5) This goes beyond ALS - I can imagine it appealing to book lovers worldwide, people who need to be persuaded to take that leap of fantasy (up and move to Paris), people who have other challenges (undergoing cancer treatment, have a special needs child, care for parents with dementia, etc.)

    I really hope you do it! In the meantime, I'm so glad I found Have Some Decorum. Are you sure you aren't somehow Southern? My grandmother would have loved you: "As I was congratulating myself on a fine job of raising my child, Grace looked me in the eye and said, 'I want to live with them.' " Still rolling!!!

  5. You move people when they read your words. Don't deny your gift of writing, share it.

  6. I ditto Karyn's comments. Really hope you do!

  7. Please write your book, I love your writing. I also found you through Heather's blog a few months ago and bookmarked it, only to rediscover your blog yesterday. I have been reading your archives for the past two days while procrastinating getting on with my own life. I've felt 'immobile', both artistically and physically, and reading your story and being inspired by your travels, photos, interior design porn, all of the Paris loveliness, has been a real kick in my buttkiss. I think I've gotten a big dose of your gratitude - when I really thought I had been grateful, but not so much. You are a beautiful, talented writer. Your legacy will be extraordinary, just not too soon.

    1. So glad you like the blog. Thank you for all of your compliments. So kind of you. Hope you're having a great day. XOXO

  8. DO IT!
    WRITE A BOOK........I adore your writing and have only been here for a couple of days!It will be A WONDERFUL gift to GRACE and US your friends in BLOGLAND!

  9. YES!! I really enjoy reading your writing. I love your sense of humor . . . dry, sometimes caustic, very direct. Do it!!

  10. If "and so it is" is your working title...well, I can't think of a finer choice than you could have made than that. Four little words that somehow express your entire attitude about where you have been, where you are and where you hope to be. I have already written how important I think this is not only for you, for David, for Grace but for so many people that don't even know of you yet. Did you finish reading The Goldfinch yet? I just did. The good stuff lasts Ellie. Bonne Courage et Bisous.

  11. Should you? Yes! I guarantee it will be a best seller! Xxxxx. Jen in Boise

  12. Please, write the book. I e-mail my friends a link to your blog and tell them If you want to laugh like hell you should read this woman’s blog . If you are feeling sorry for yourself you should read this woman’s blog. She has ALS. But she is unbelievably amazing, inspiring, honest, direct, hilarious. Life’s lessons learned from reading her blog. I think she is working on a book. I so hope she gets to finish it.

  13. That book would keep me up at night reading it and I bet I would never forget it like I do so many others. You are hilarious…watching you friends have sex - how did you come up with that one? And you make me weep too. Your book would be a best seller, so yes you should. Gracie looks so like you and is so very pretty. Kate

  14. Your book will be FABULOUS! Is it ready to be published soon??? I cannot wait. I hope it is out before Christmas, so that I can purchase a copy for each of my friends with a wicked sense of humor and great sense of style. It would make a fantastic present!

    BTW, I have had a severe, chronic headache 24/7 for the past six years. Although it is not life-threatening, it has been extremely life-altering. It has some of the best neurologists in the world stumped. I agree with you. Chronic illness can show you people's true colors - good and terrible. It has really opened my eyes.

    I am glad that you realized that your daughter, Grace, is your legacy. Beautiful!
    Prayers for you,
    Michelle from