Time To Delegate

As you know, ALS has been wreaking havoc on my delicate little body lately. My voice is at a whisper, my neck is so weak that I look like a Weeble Wobble, I can only swallow liquids and the worst part, and I do mean the worst, is that I cannot color my hair. So, unfortunately, I am nearly a brunette… No offensive, brunettes.
 
Because of all of this, I do not really have the energy to blog but I have a great idea. Do you remember when I wrote the blog about the Proust Questionnaire? If you haven't read it yet, click HERE. Go ahead, I'll wait… Tick tok tick tok.
 
Ok, now that everyone is caught up regarding the Proust Questionnaire, here is my idea… I thought I would present a few questions from the Questionnaire to some of my rather interesting friends and they could be guest bloggers! We can always learn from others. All of my friends, to me, are absolute treasures and all have something different to offer. So, as I appreciate my friends, I thought you would too. The next blogs will be guest bloggers answering the Proust Questionnaire! Stay tuned.
 
Xoxo

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.

Merci Beaucoup Bitches

 

Good morning from Paris. Today some thank you's are in order... Thank you's to all of you. As I am winding everything down, all I can think of is all of you. I have read every comment and every email and I am just gobsmacked by all of your well wishes, kind words, prayers, advice, donations, personal stories, and LOVE. Gracie, the brat, always teases me that my blog readers are my imaginary friends. However, I think you are quite the opposite. Your generosity of heart has gotten me through some very dark days... Like yesterday.


Yesterday afternoon my ALS doctor paid a visit to my apartment. Doctor Meininger has been my doctor since the beginning. After I was diagnosed with ALS in New York, I immediately flew to Paris to see Doctor Meininger because he is the foremost specialist in the ugly world of ALS. He has seen me go from walking to 100% paralyzed. Because this is Paris and a civilized city, Doctor Meininger arrived to my apartment to have a chat. After an espresso and a quick evaluation, the kind doctor looked me in the eyes and said, "You, indeed, are at the end of ALS." The only thing I could do was laugh and think, "Well, that's not something you hear everyday."


I spent the rest of the afternoon looking out the window because what the fuck else was I supposed to do? Do you know what I thought of? I thought about all of you. I thought about all of the compassion you all have shown towards me. Truly, I did. I pushed aside all of my other current worries and tried to focus on something positive... All of you.


Through these years with the blog we have been through a lot and have supported each other through every recipe, every design disaster, every Parisian flower shop, every Provencal village and every heartbreak, heartache, and emotional crisis and meltdown known to mankind and every time we were there for each other without fail... And for that, I would like to thank all of you.


Even though my current health situation does not allow me to respond to every email or comment, I want all of you to know that I have heard you. I wish I could reply to all of you personally but I just cannot so here I am thanking all of you the only way that I have left... Through the blog. My thank you's are to each of you personally and I send to each of you a big fat sloppy hug and kiss.


You know, women (and Stephan) are truly remarkable... Definitely the more evolved species. Women have the capacity for true compassion and for that I am grateful. All of you have enriched my life more than you could ever imagine. We have laugh and cried (and judged) with gusto. My life is truly better with having known all of you.


So...

MERCI BEAUCOUP FROM THE BOTTOM OF MY HEART!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Stay tuned for the next blog... My most exciting blog yet... The launch of my book! Can you believe that I finished it! It will be available on Thursday through the blog. Thank you for your patience and support. Love to all of you...


One more thing... I have had been asked by so many of you if I could give out my address so you could send cards and I have always said no because David wont allow it in case some of you want to murder me but I don't care anymore so here is my address...

Eleanor O'Connell Decret
16 rue de Montpensier
Paris, France 75001

Cards, flowers, cookies or murder... your choice. Thank you in advance.

Roses and Thorns

Where the fuck do I start? Just when I thought that I was edging towards a peaceful week, a storm arrived... A shit storm.

I wasn't going to share all of the gory details with you but as you know, I tell it like it is... Roses and thorns. So, here goes...

My health is at such a perilous state that I was forced to make some decisions... Ugly decisions. Just like a pregnant lady's birth plan, I have to have a "death plan." This is the tragic part of ALS. I have to get in front of the inevitable. I made a deal with myself from the first week that I was diagnosed with ALS... I committed myself to go the distance with bravery, honesty and tad bit of dignity. However, I also made a deal with myself that if this disease got to a point that I became a burden and lost my dignity then I would bow out. This is where we are at, my friends. I have quite literally, had enough.

David and I have rented a friend's apartment in Paris in the garden of the Palais Royal. I am here to rest, gather my thoughts and wits and, as they say, "Get my affairs in order." This garden also happens to be where I will have my ashes spread "after." So, as I sit here looking out of the window towards the garden, I don't know if it's comforting or horryfying that I am gazing at my own "final resting place."

Don't start crying yet, this could take a few months. I still have some work to do.

First and foremost, Grace. What to do about Grace? There are no answers to this question. There is no preparation adequate enough to remedy a mother's death. That's just a plain fact. There are no solutions good enough. All I can do is love her. These past few weeks have been brutal with Grace. Bad behavior has become our new normal, unfortunately. Grace and I are caught in the middle of a storm that won't stop and we both do not know how to weather this one. She is acting like a brat and I, in turn, am acting like a lunatic. The "How to Behave Properly" guidebook was apparently lost in our move from the states to Paris. Gracie and I have had some serious Come To Jesus Moments these past few weeks. Neither of us have come up smelling like roses.

My best friend, Yolanda, and I have had daily conversations about the reality of being sick, super sick. We have marveled at the side effects of terminal illnesses... The behavior of others. It is filled with roses and thorns. Just this past week I have been betrayed by my sister, my mother, my insignigficant father, Gracie's father and one of my closest friends. This is the thorn of getting weaker at the end... The wolves start sniffing around and when you are at your weakest, the wolves attack. #NeverLetYourGuardDown
On the flip side, roses emerge in the form of a cherished friend, Mer, who showed up in Paris with hugs and alcohol.

My friend, Diandra, and I have had deep conversations about coming to terms with what is worth caring about and what is not worth caring about because in the end, the only thing that is important is how to leave this world a better place than you found it. I plan on doing that after seeking some revenge on those who deserve it... #IamNotThatEvolved

So, this brings us to today...

As I wait for the dust to settle, my day is consumed with very important activities...

Watching every episode of Broad City
Eating boxes upon boxes of chocolates
Calling all of my friends to tell them that I love them
Watching the ghosts of the Palais Royal walk around (I can see them)
Finishing my book (It will be ready next week)
Firing off nasty emails to those who deserve it
Sourcing the best Thai Coconut Lemongrass soup in Paris (it's the only thing I can fucking eat)
Apologizing to David for every rude comment that I may or may not have said to him
Going to my favorite church and telling God that I am ready
Washing my hair (It's been a month)
Knocking some sense into Gracie
Start drinking and doing drugs because why not?
Laughing a lot, wearing pretty pajama, using all of my good perfume, listening to my favorite music, crying like a fat kid, lighting all the good candles, eating fried chicken, spending too much money on flowers and...

Spending every day like it is my last... Because it is.

#StillAlive

Hi everyone. It's your friend, Ellie. I promise a long blog tomorrow with all of the updates. Thank you for all your prayers... I think they are working.