Proust Questionnaire. Guest blogger Dr. Paul Alan Cox

Good morning from Paris.

As we continue our Proust Questionnaire series, I thought I would give you a little update regarding “my condition.” Baby steps, baby steps. I finally ate some hummus and believe me, that is a miracle. Baba ganoush is next. It is easy to get discouraged but I am trying everything in my power to stay mentally strong so that my stupid body can get stronger. However, I just want to kill everyone. I watched an ALS documentary over the weekend called, Hope for Steve, and I don’t think I should have. It depressed me and I usually don’t get depressed. I kept thinking as I watched the documentary, “How horrible would it be if I got ALS.” And then I remembered that I do have ALS. So, needless to say, I am a bit down… so it’s best if I don’t do a lot of writing because I might inadvertently/purposely offend just about everyone.

So, let’s just talk about someone more positive (and smarter) than I am… Dr. Paul Alan Cox. My ALS hero. In 1997, TIME magazine named Dr. Cox one of 11 “Heroes of Medicine” for his work in ethnobotanical drug discovery. This accolade is just the beginning for this gentleman. I am not going to say another word until you go to his website HERE and read for yourself the marvel of a man he is... I’ll wait…

See! Now this is the guy that you want on your team! And, I am lucky enough to have him in my corner… And my apartment for that matter. Yes, you heard me, Dr. Paul Alan Cox makes house calls… to Paris.

A couple of years ago, Dr. Cox and his brilliant friend, producer Bo Landin, started their endeavor to make a documentary on ALS and asked yours truly to be a part of it. I was honored but I was also worried that I would look like a fat fuck on screen so I had some hesitations but I did it anyway… For the sake of ALS and because I would do anything for Dr. Cox because he has made it his sole mission in life to cure ALS…. And because he is adorable.

Dr. Cox believes that ALS stems from a toxin… And I agree. You can read his whole theory HERE. If Dr. Cox cures ALS it will also help those with Parkinson’s and Alzheimer’s so his research will pretty much affect everyone. And this is why he is my hero.

Now, let’s listen to him for a while because, trust me, he is far more interesting than I am.

Proust question for Dr. Cox: Which historical figure do you most identify with?

Dr. Cox‘s Answer: French Philosopher Albert Camus

ALS is a disease with no known cause, no known cure, and only one drug approved in 1994 that adds a few months of life to patients. People sometimes ask me why I founded a non-for-profit research Institute whose aim is to discover new drugs for ALS.  Funding a research charity is often hard, and coming from a very different research background (I am an ethnobotanist) and approach (environmental triggers instead of genetic causes) often leads me and my small team to be considered as outsiders in the broader ALS research community.

Raising the funds necessary for laboratory rent, equipment maintenance, staff salaries, clinical trials, etc. sometimes strikes me as like Sisyphean labor. In Greek mythology, Sisyphus was sentenced to roll a large stone up the side of the valley every day, only to watch it roll down at night. Albert Camus in his essay The Myth of Sisyphus considered his plight. He wrote “The struggle to the heights is enough to fill a man’s heart. We must imagine Sisyphus as happy.”  

That certainly has been the case with me. We are making good progress in our ALS research and have discovered an experimental drug, which Ellie is taking, which promises to slow disease progression in ALS patients. It was wonderful two weeks ago for my wife Barbara and I to visit Ellie, and to be cheered and encouraged by her. Sisyphus is indeed happy.

Don’t you just love Dr. Cox. I sure do!

Ellie’s question: What is your favorite charity?

Dr. Cox’s answer: Institute for EthnoMedicine. http://ethnomedicine.org/make-a-difference/

*Something you don’t know about me? I am completely obsessed with the HBO series, VEEP. Have you ever watched this? It is brilliant. The writing… Genius. I am not sure if I am proud of this but I have a feeling that I would be the same exact President as Julia Louis-Dryfus’s (who, FYI, was my neighbor in Santa Barbara) character, Selena, would be… Judgmental with a lot of F words and zero tolerance for BS but well dressed. My favorite are her parenting skills or lack thereof. In the last episode, she looked at her daughter, Kathryn, just before a big important meeting, and said to her, “Why is that your hair.”

Love.

A toute!

#April2016

Let me start this blog by saying… I am so fucking sick of myself. By the way, if your delicate ears cannot handle a few swear words (at least 2-300 per paragraph) this is not the blog for you.

And also, this is a super long blog, more like a novel… or a police complaint.
Many of you have asked how I am. I hesitate to answer because it ain’t so pretty. However, be careful what you ask for because today I am going to tell you… I apologize in advance.

In all honesty, I feel like a death row inmate waiting for my execution for a crime I did not commit (or, did I?). Dead girl (not) walking. I have even considered my last meal (Mrs. Wilkes Savannah, Georgia fried chicken, mashed potatoes and gravy, green beans, biscuits and 16 glasses of sweet tea). As you know, my French doctor has confirmed that I am in the final stages of ALS. I could die at any moment… but here is the thing… I keep waking up every fucking morning.

When I was young, my sister and I would get ready for bed… put on our floor length nightgowns and kneel by our twin size canopy beds, clasp our hands and pray…

“Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”

I swear to God, we said this prayer every night. I would say it, but did I really mean it? I was so young, but here I am, aged 46, finding myself laying here sacked with ALS looking out my window of the Palais Royal and uttering the same prayer…

“Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I should die before I wake,
I pray the Lord my soul to take”

But this time, I mean it. I am ready to go but every morning I wake up and think to myself, “What are you still doing here, moron?”

For the past almost 6 years, ALS has been hard… very hard. But now, these past 2 months have been complete hell and I did not think that I was cut out for this kind of struggle and I was resigned to let myself succumb to the inevitable. I mean, how would you feel if you could not… hold your head up, open your mouth wide enough for a toothbrush to fit, swallow your favorite chai tea with vanilla soy milk, eat even old lady mashed potatoes or a fucking raspberry, or most importantly, dictate into your voice recognition software… which bring me to my next grievance…

Autonomy is the key to life. It truly is. Try having it taken away from you for one day and you will realize the importance of it. My voice recognition software was my autonomy… my freedom. I emancipated myself from ALS with my computer. I could do everything… my blog, my book, my shop, my emails, surf the web, write letters, research exhibits and do exactly as I pleased… and now that has all been taken away because my voice is too weak… and it is quite frankly, driving me crazy. I now have to rely on my 3 caregivers. Caregivers they are… executive assistants they are not. Try asking a grown Filipino man to design a Paperless Post greeting card for you. Let me tell you, it’s hell… Hell on earth. They are ready to kill me… and the feeling is mutual.

So I continue to ask myself, “Why the fuck am I still here?”

I thought that I had my house in order and was ready to depart. I even went to my beloved church and said to The Man, “Dude, I’m ready. Let’s go.”

However, for some reason, I am still here. Why? Why? Why? What else do I have to do, to accomplish, to resolve, to prove?

It turns out I don’t have to do any of those things… I only have one thing to do… continue to raise Gracie. Not that any child is ever “ready” to have their mother die but I thought that Grace was “ready enough.” How stupid was I? For Grace’s entire life she has been perfect. She has never even had a “time-out.” I never even needed to baby proof our house because Grace never touched anything… she just sat there, darling as ever, looking at her books. Even her teenage years were flawless. And then, #April2016 happened. Gracie decided to turn into an asshole. An asshole with support… let me explain.

I am not a conventional mother. That comes with pros and cons. Grace is my life and she can do no wrong in my book until she does and then my “unorthodox” parenting skills come into play. My husband explains it as, “You let Gracie slide and slide and slide and then you explode.” C’est vrai. It usually goes like this, “Gracie, please clean your room. Gracie, clean your room. GRACIE, CLEAN YOUR FUCKING ROOM!” She usually just ignores me and cleans her room whenever she sees fit and I usually just let it slide. However, there are certain things that I do not let slide… school work, job responsibilities, politeness, thank you cards and taking a minuscule responsibility in me.

The first day that I was diagnosed with ALS, I made a promise to myself not to burden Gracie with my bullshit. This was my disease and I wanted her to have as normal of childhood as possible. David and I have made this possible, thank you very much. However, occasionally, little Gracie is expected to help out. From time to time, caregivers flake… they are human (which is not an excuse, in my book). This is when Gracie has to help out, for fucks sake. She hates it, I hate it, David hates it… but it is necessary sometimes. Such is the case of #April2016. I had to unexpectedly fire my new caregiver because he was caught taking pictures of me while I slept. While I was flattered, I still had to let him go. Relax, I rehired him because he is a great caregiver even if he is a little bit creepy. I am laughing because he is the one who is typing this. Anywho, being one caregiver down, poor little Grace had to help out… for 4 hours. Boo Hoo. Grace protested. I exploded.

To make a long story short, Grace decided that this was the perfect opportunity in her career to rebel. Gracie convinced her (part-time) biological father, Dylan, that I was a lunatic and was, I think she cleverly used the term “psychologically verbally abusing” her by calling her a “selfish pig”… a la Alec Baldwin. I have no regrets, she was indeed, a selfish pig. This is what I was talking about with my unorthodox parenting skills. Well, Gracie didn’t take kindly to this criticism and decided to… convince her college professors (and the dean of her school, for that matter) that she was “under undue stress” and needed to excuse herself from the last month of the semester and finish her projects “remotely” and fly to California “to recuperate.” While I commend her for her initiative and manipulation skills, her actions are wholly inexcusable on every level, especially the part where Gracie did not tell me ANY OF THIS! Yes, you heard me correctly, I did not know about any of this. However, Gracie’s father knew… he paid for her plane ticket. Gracie’s aunt Heather knew… she called Gracie’s school to confirm Gracie’s request. Gracie’s grandparents knew… they picked her up at the airport. David knew… he ordered her an Uber to go the airport. My best friend, Jenny knew… she told Gracie that Gracie could stay at her house in LA.

NEEDLESS TO SAY,
I FUCKING EXPOLDED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My whole world collapsed. While I was busy trying to recuperate from the hellish previous 3 weeks at the palliative care center, little did I know, Grace and her cohorts were busy scheming for Gracie’s departure. Trust me, this took some planning. Without boring you with ugly details, mark my words… the word “catastrophic” does not do the situation justice.

The funny part and most rewarding part (for me) of this whole ordeal is that Gracie’s father, aunt, grandparents, David and Jenny were all used, unbeknownst to them, like pawns in Gracie’s federal prison like scheme. Gracie led all of them to believe that the stress of my ALS was just too much for her and that the stress of my ALS was affecting my “cognitive reasoning” and therefore, poor little Gracie needed to escape. What these fools didn’t know was that Gracie, in actuality, didn’t want to finish a 30-page school research paper due at the end of May, that there happened to be a boy in Los Angeles that Gracie wanted to see and she was craving an In-N-Out Burger. Of course, this gaggle of morons was not privy to any of this because they were under Gracie’s charming spell and because THEY ARE NOT HER PARENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And by the way, my cognitive reasoning skills are in tip-top shape… ask my doctor… and this is why I am fully aware of Gracie’s bullshit. Oh, also, Gracie told everyone that I was a terrible mother because I wouldn’t let her go to public school. Ask me if I care? By the way, this was the public school that had an on-site daycare for the student’s babies!  

Want to know my mental state after Gracie got on that airplane leaving Paris and me? Cry me a river is an understatement. Furor and revenge is more like it. I knew that I could get Grace back under control but what was more upsetting to me was the betrayal of those whom I trusted to take care of Grace in the likely event of my death. Here they were faced with Gracie’s first indiscretion and they failed miserably. I mean, c’mon, who lets a kid leave school before finals and go on vacation to LA leaving behind a mother who is about to fucking die? Idiots, that’s who!

So, now, I can’t die peacefully as planned. Now I have to stay alive to continue to raise Gracie because I don’t trust anyone else to do the job up to my standards (except Yolanda and Diandra, of course). I even went to my church and had to ask God to retract my request.

So, here I am, forcing myself, willing myself to stay alive. Ask me how difficult this is? I’ll tell ya…

ALS is ravaging my body. I spend the entire day fighting whatever it is that is trying to kill me. I have quadrupled the dosage of an experimental “drug” that is supposed to block the toxin of ALS. I never did this before because the safety has never been proven, but now I have nothing to lose, so fire away. I take it 10 times a day. I shove in my feeding tube every half hour the following: Kale, spinach, cucumber, fennel, coriander, coconut water, coconut oil, carrots, green peas, whole grain brown rice, sprouted quinoa, sweet potatoes, garlic, rosemary, ginger, lemon, flax seed oil, turmeric, almond butter, beets, pomegranate, blueberries, celery, broccoli, garbanzo beans, seaweed and every other healthy fucking thing I can think of. Bored yet? Think how I feel… I do it every half hour. Every half hour! I do it because I cannot die yet and let those incompetent Judases parent Gracie.

After 2 weeks of ranting and raving, I got Grace back to Paris… we had some words… she apologized… I did not (because I do not negotiate with terrorists)… and we are back on track. No, I do not forgive Gracie’s accessories in her crime… they can all fuck off except David and Jenny who I forgave… just because.

Sorry for this lengthy explanation but remember, it is your fault because you asked how I was doing.
So, where do we go from here?

I have decided that I will not leave this earth without kicking and screaming, fighting tooth and nail no matter how ugly it gets, even if I am on my last breath… I will not abandon my post… my daughter. This could be a week or 3 months. The stages of ALS can vary. Isn’t that fun?

I am sure Gracie will be just thrilled. To reward Gracie with her bad behavior I have decided to over-parent her even more than I already do. I have secretly inserted a tracking device under her skin… just kidding… no I’m not.

In the meantime, while I am trying to stay alive, I thought we should make the best of it.

Let’s talk about adaptation… I have had to adapt to a lot. Canes, walkers, wheelchairs, feeding tubes, handicapped toilets for fucks sake, breathing machines, daily medication, caregivers and adaptation computer software. I always told myself that I had my limits as well. I told myself that I would never live past the point when I could not speak. What’s the point, really?

But here we are… I can barely speak but I need to! So what are we going to do, my friends? I have to adapt, obviously. Enter Eye Tracking Computer Software. Geeky and embarrassing, I know, but fuck, what else am I going to do? Gracie needs her mother! I guess I should be grateful that eye tracking software even exists but #ItSucks.

On top of having to need eye tracking software, now I have to pay for it and it is expensive as fuck. If you want to know how expensive ALS is, please refer to everyone’s favorite blog posting of mine titled, Dear Fat Fuck, HERE. Leave it to me to get the most expensive disease on earth… 24 hour caregivers, breathing machines, imported feeding tube formula, medication (FDA approved and non-approved), doctors that charge 150 euros per hour, kinesiologist, massage therapist, daily nurses, and blah, blah, blah… I am so high maintenance it’s revolting. Thanks to my best friend, Yolanda Hadid, who established a donation page for me, HERE, I can afford some of the cost but it in no way covers all the expenses of ALS. Thank you to all of you who have donated and thank you to Yolanda.

Also, I want to thank all of you for your cards, gifts and flowers. Remember when Gracie called you my “imaginary friends?” Well, that same Gracie would rush over to my apartment and eagerly open every single one of your cards and read your kind words to me. One day, my caregiver, Michael, started to open the cards and Gracie protested, “Let me do it!” She loved it. Imagine that!

I am grateful that Gracie and I recovered from #April2016. The good news is that I know how to multi-task. I will continue to hover over Gracie, I will learn to adapt to the eye tracking software, I will continue to take pictures of the hot French guy outside my window and post it on Instagam HERE, I will continue my blog, go to exhibits, try to stay alive, take illegal medication, share my life with you… AND… I will reopen my shop!

You won’t believe this but little Gracie finally decided to take an interest in my shop. She has been in training for almost 21 years and has a trained eye that rivals the best of them. She can spot chinoiserie from a mile away. She knows good gilt mirrors when she sees one and her computer skills are magnifique! So Gracie is now my #1 Have Some Decorum Shop Girl. We have put together a fantastic collection of antiques that will be available next week!

As my friend Hollye says, “Look for the silver lining.” Even though Gracie and I barely survived #April2016, we did come out of it with a new understanding…
I am her mother and what I say… goes.

Thank you for asking how I have been doing. Are you disappointed that you did? Didn’t expect all of this, did you? I am sure many of you, if not all of you, have some sort of similar experience with your children as well. I am laughing thinking of the comments that I will receive for this blog. I swear to God, if any of you dare to tell me that Grace is just acting out of anger because of my ALS, I will puke. She isn’t… she just didn’t want to do her homework for the first time in her life.

THE END.

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.

Houston, We Have a Problem...

What a difference a day makes… Just last week I was cozying up in my cute farmhouse in Provence with my favorite caregivers, Teddy the big dog with a heart of gold, Valentine the little dog snuggled between my boobs, and Iris the little injured black stray kitten holding on for dear life, 50 sheep outside, plane tree lined streets, Alpilles mountain views and the promised Provençal lifestyle depicted by my favorite Impressionist painters at my fingertips…

And today…

I am in a palliative care center in Paris.

But let’s back up… What could have possibly happened within a few weeks for this drastic change? Well, it turns out I am a tad bit more delicate than I thought. With the past six years that I have had ALS, I have had everything under control, monitored and finely tuned… Caregivers, medication, feeding tube formula, vitamins and my sanity… And then all hell broke loose. My caregivers quit because I had too many animals and they hated living in Provence. I stopped taking my medication, couldn’t find a good masseuse, the kinesiologist never returned my calls, the post office couldn’t find my little farmhouse to deliver my feeding tube formula so it got lost, the new Moroccan Muslim nighttime caregiver was too busy smoking, drinking espresso and praying to Allah to give me my vitamins, I didn’t have the energy to ask for my regular chai soy latte and green juices. My husband, David, showed up at the house on Friday with three new caregivers who, bless their hearts, were/are idiots and I think one of them had elephantiasis of the balls… literally… which was the straw that broke the camel’s back. My little body just couldn’t take it anymore and I crumbled.

I couldn’t hold my neck up, I couldn’t even swallow water or food, and on a TMI (too much information) level, I couldn’t go to the bathroom without some powerful drugs. A recipe for disaster. Time for a little hospital visit, wouldn’t you say? The paramedics arrived and got me ready for transport to the hospital. Here’s the best part… They took me out through the window like a fat person because my doors were too small for the stretcher but probably just to humiliate me. The doctors at the hospital thought it would be best to check into a palliative care center (whatever that is) that specializes in ALS losers. David thought it would be best if I did so as well, but… in Paris. Au revoir, Provence.

 

So here I am. I arrived with a broken heart, a broken body and broken moral. I thought to myself, “Maybe it’s time that I exit gracefully, while I still can.” I had David take me to Notre Dame Tuesday night like to, I lit a candle and started to have a little discussion with the man above. I wish I would have politely asked, “God, why must I carry such a heavy burden?” But instead, it came out more like, “Dude, what the fuck?”

 

I asked him, “Why are you throwing so much at me? Are you trying to force me to quit? Are you trying to break me? Are you trying to see how much I can take? Are you searching for my breaking point?” As I sat there waiting for answers amongst a sea of tourists, I felt alone. All alone for the first time in my life and especially the first time with ALS. As I waited for some sign from God, I started to feel myself break. All of my six years of bravery were being reduced to rubble right before my eyes. I was losing my mojo in Notre Dame of all places.                                                             

 

Then I thought to myself, “Ellie, this is what separates the mice from the men.

You can either give up like a coward or forge ahead and prove to yourself that your life is worth fighting for. You just might have to fight a little harder."

 

So, call me a fool, but this is what I decided to do. I am going to fight my ass off to stay alive. I have now transformed the palliative care center into my wellness center. I have informed the staff that I am not here to die, I am here to thrive. I will spend the next month recuperating on my own terms. This means doubling my food intake, everything natural and organic, increasing my amino acids, pounding my medication, sucking down green juice after green juice, chai soy latte after chai soy latte, coconut oil, coconut water, flaxseed oil, turmeric and guacamole… Lots of guacamole.

Massages, meditation, acupuncture, physiotherapy and kinesiology.

 

That’s what I will be doing physically. Mentally, you know what makes me happy… My blog, my shop and writing my book… So that’s just what I’ll do. Little does this palliative care center now that I will be transforming my room into an office, an antique shop and a writing retreat.

 

Gracie and David have been with me every step of the way. My mother and sister are keeping me laughing and all of my friends, as usual, have been fucking champions. And I have decided to treat myself like a princess while in Paris and I will order beautiful flowers from Odorantes on rue Madame and chocolates from Patrick Roger on Boulevard Saint-Germain.… To keep my spirits up, of course.

 

I will be here for a month, so let’s make the best of it!
XOXO

What Does Sick Look like, Lisa?

As you know, I am obsessed with the entire Real Housewives franchise because I am shallow and have a lot of time on my hands. However, it must be pointed out that the sociology of the Real Housewives is très interesting. Whether you know it or not or even want to admit it, watching the Housewives is a study in social anthropology. It’s like watching wild animals in their natural habitat.

For whatever reason, the filming of the Housewives brings out the worst in its characters. The seven deadly sins are fully represented every week… Gluttony, pride, greed, lust, envy, wrath and sloth. However, last week a whole new sin was introduced… Stupidity. This 8^th cardinal sin was brought to us by none other than Lady Lips herself, Lisa Rinna.

Let me set the stage and get you up to speed in case you missed last week’s episode of The Real Housewives of Beverly Hills. My friend, Yolanda Hadid, one of the housewives, has neurological Lyme disease. It is a mysterious disease, difficult to diagnose and so far, impossible to cure. But it’s got another little special side effect… With Lyme disease, you don’t actually LOOK sick. Nothing about Lyme disease screams, “Look at my Lyme disease!” So, our dear Lisa Rinna had the nerve/gall/balls/ignorance to accuse Yolanda of faking her illness and even went so far as to accuse her of having Munchhausen Syndrome which, by the way, Lisa had to Google.

Now, I know I should just let this go and not let it bother me… But it does and if you know me, I’m going to talk about it. Who am I to talk about it? I am two things: I am Yolanda’s friend and I also happen to be sick, very sick, actually the sickest so I know what I’m talking about.

June 2011. I called Yolanda exactly 20 minutes after I was diagnosed with ALS. Her response was, “Don’t worry, we will go through this together.” She didn’t question me, she didn’t question my diagnosis, she didn’t Google Munchhausen syndrome. She was just plain and simple… There for me.

2012 or so, Yolanda got sick but she didn’t tell me. She didn’t want anything, including her illness, to diminish or take away attention from my ALS if you can understand that. I would call her every other day and she would ask how I was and I would tell her what was going on with me that day… I fell, I can’t lift my arms up, I can’t breathe very well, I can barely swallow, I have anxiety… Blah blah blah. I would ask her how she was and she would answer, “I’m fine.” I didn’t know that she actually wasn’t fine. Her Lyme disease was tearing her apart but she never told me. She suffered in silence. She always put me first. Never complained to me once. Is that Munchhausen, Lisa?

By the second year of her illness, I realized that she was very, very sick and a whole new side of our friendship developed. We could commiserate, in private. We talked doctors, treatments, Eastern and Western medicine, stem cells, hyperbaric chambers, blood transfusions, supplements, oxygen therapy, surgeries, clinics, researchers, fundraisers… You name it, we discussed it, but only amongst ourselves. It wasn’t until later that we both became more vocal about our illnesses. I did because I have no boundaries or filters. Yolanda did to help others, to be their voice.

Sometimes neither of us would leave our houses for weeks and we understood that it was okay. We have taken a backseat to the world right now. We both talked about how we felt like flies on the wall watching life go by us. I physically was paralyzed and Yolanda was mentally paralyzed. We joke that we should morph our two bodies, mine mentally and Yolanda’s physically, and then we would be a whole person again.

We watched our children become more independent because they had to because on a certain level we couldn’t be the mothers that we once were. We physically and mentally couldn’t be. This is the most difficult challenge of being sick. I didn’t get to take Gracie to her first day of college. Yolanda didn’t get to go to Gigi and Bella’s Tom Ford fashion show or drive Anwar to school. We didn’t get to be there when our children needed us, when they needed our support. We didn’t get to bask in our children’s glory quite frankly, and trust me, we live for that shit. Is that sick enough for you, Lisa?                                                     

We haven’t been able to be the wives that we wanted to be to our husbands. My David hasn’t ever had a wife who could stand up. My David hasn’t seen me in high heels since 2010. My David hasn’t had a life outside of caring for me 24 hours a day since 2011. Yolanda’s David only saw her healthy one year of their marriage, if that. Yolanda used to go with her David to every event, concert or fundraiser that he was performing at. That all stopped and David lost his partner. My David lost his partner as well. Yolanda and I just physically and mentally couldn’t do it anymore. Do you think that we wanted this to happen? Is that sick enough for you, Lisa?

And this brings me to my beef with Lady Lips, Lisa Rinna. What is sick supposed to look like, Lisa? Just because you cannot see something, does that mean it is not there? If you accuse Yolanda of not looking sick, you might as well accuse me of not being sick as well. I went to Italy last week to a farmers market, does that mean I’m not sick? Yolanda went on a gondola ride in Aspen yesterday, does that mean she’s not sick? Look a little deeper, Lisa… While I was at the farmers market in Italy, I couldn’t taste the samples of Parmesan cheese because my throat won’t let me swallow from years of ALS. While Yolanda was in Aspen, she couldn’t go skiing because she was physically exhausted from years of Lyme disease. But you didn’t see this because you didn’t look deep enough. What is sick supposed to look like, Lisa? Lift up my shirt and you will see a feeding tube and a diaphragm pacer inserted under my skin. Lift up Yolanda’s shirt and you will see scars from having her implants removed and a scar from her antibiotic port. Is this sick enough for you, Lisa?

I can’t walk. Yolanda can’t drive. I cannot breathe on my own. Yolanda can’t stay awake more than two hours at a time. How many buckets of tears must we shed for you to deem us sick, Lisa? Yes, Yolanda is still gorgeous, and I am sorry if this is confusing you but guess what? She is sick. No, Lisa, she doesn’t want to be sick. She doesn’t want the attention. She wants to be well. She doesn’t want to struggle. She doesn’t want her life to be watched from the sidelines. She doesn’t want to miss out on her children and their lives. She never wanted to disappoint her husband. She never wanted to disappoint her friends. She never wanted you to judge her.

So next time you decide to form your little witch’s circle and cackle at the fact that you think someone is not sick just because you don’t see it, think again.

I hope I have clarified things for you. I will patiently await your apology towards Yolanda and on behalf of everyone who is sick but doesn’t look sick, according to you. I accept apologies in the form of gifts especially Cire Trudon candles.

Yolanda is much more polite than I am and she only mentioned that some people (you) do not understand long-term illnesses. I am not that polite and I will just say… See you next Tuesday.

Don’t mind if I do, Gramercy Park...

 

In Manhattan, New York there is a very special park called Gramercy Park. This park is so special that it's private and can be only accessed by those #LuckyDucks who live on Gramercy Park. And they get a key. The golden key to Gramercy Park. Be jealous, be very jealous.

But, guess what? As part of an old New York charitable holiday tradition, the gates to Gramercy Park are open to us losers on Christmas Eve! The Gramercy Park church, Parish of Calvary St.George, will also be having carolers starting at 6 PM in the park. This is absolutely not to be missed!

You may be wondering why I am so excited about this. Well, it’s hard to even write this without crying, but Gramercy Park happens to be the last place I was before, minutes before, I was diagnosed with ALS. I thought that I would let you guys in on a chapter of my book about it. I should have my book finished by March but I thought you guys would like a preview of the Gramercy Park chapter.

 Here it is…

Gramercy Park

Gramercy Park on the lower East side of Manhattan has always held a special place in my heart. The name alone just sounds cool. Then there is the Gramercy Park Hotel designed in part by one of my favorite artists, Julian Schnabel, with its amazing color scheme of rosy reds, Fire King green and sapphire blues. Then there is the architecture of the brownstones around the park. A little village within a big city. And then there is the garden. The secret private garden to which only a lucky few hold the keys.

I always feel like a little part of me is still in Gramercy Park. Like a little bit of me is still wandering around the park… The part of me that doesn’t have ALS.

As I walked out of the offices of 1^stdibs on my lunch break casually walking to the neurologist office for what I thought would be a quick appointment, I never imagined that this would be my last carefree walk. Physically it was not a carefree walk because I had a strange limp and I was worried that every crack in the sidewalk would cause me to fall flat on my face. Mentally, all I was thinking about was the beautiful park.

I walked past the church at the corner of the park and I remember saying to myself, “On my way back from the neurologist appointment, I need to stop at the church and check out their little thrift shop.” I was thinking that I needed to come back to the Gramercy Park Hotel for cocktails later that week with my girlfriends. I was thinking, “God, I wish I could afford one of these brownstones around the park.” My mind floated around thinking how beautiful and lush the little garden was and if the residents who held the coveted key to the garden could grow tomatoes in there.

What I was thinking about was just… Nothing. Now all I think about is… Everything. That five-minute walk in Gramercy Park was the last trace of who I used to be. That girl was like you… She had worries but they were just regular worries. Can I pay my rent this month? Is Gracie getting good grades in school? Does David love me more than his ex-wife? Why are my friends such bitches? Will I ever forgive my father? You know, regular worries. My days were normal...wake up, deal, go to bed. I walked around Gramercy Park that day with my head in the clouds and what I would give to go back to that day.

Sometimes I close my eyes and try to remember that moment in Gramercy Park before I walked into the doctor’s office. I can see it, feel it, smell it and almost taste it. I want to remind myself of who I was before and what it felt like to be carefree. I haven’t been carefree since that day. I want to cherish those few moments and have them emblazoned in my soul so I don’t ever forget what it was like… Before.

Sometimes I beg God to just let me have those few moments of liberty back. Let me just walk around the park again without knowing my fate. Let me be ignorant, let me be blissful, let me be unafraid. If I could just have back a few moments… I would run around that park smelling every flower letting myself get pricked by a rose thorn. I would pop into the hotel and grab a cappuccino. I would peer into the bottom windows of the brownstones. I would skip over the cracks of the sidewalk. I would walk down the tiny broken steps of the church thrift store and pick things up and put them down at my leisure. Hell, I might even stretch out my arms, lift my head to the clouds, start spinning around in circles and sing a little song. At the end of my allotted time, I imagine I would try to renege on my deal with God and I would ask for more time. Don’t make me go forward to my life with ALS. Let me just stay in this park without ALS. Just give me another few minutes… This time I will cherish it, I promise.

So I encourage all of you to get over to Gramercy Park on Christmas Eve...

 

 

 

 

New York city

Bon Courage

French people mostly annoy me. It’s no secret. Except my French friends, they don’t annoy me but the rest of the population of French people do. Usually it’s the pessimism that I can’t handle. I come from the land of “anything is possible” and it is hard to adapt to my new home of “everything is impossible.” It’s also the everyday nuances of the French, mostly Parisians. I am not bashing Paris, I’m explaining Paris. Whenever I hear Parisians say, “c’est top, genial, le shopping, le jogging, le concept“, or the worst, “putain” (which I hear about 4000 times a day), I just wince. Don’t get me wrong, Americans annoy me also. It’s no secret. Except my American friends, they don’t annoy me. I am non-discriminatory in my annoyance. I am not bashing America, I’m explaining America. Whenever I hear Americans say, “God Bless America, gun rights, build a border, defund Planned Parenthood“, I just wince. Americans usually make up for their ignorance with their brilliance. One word: Instagram.

The French, however, make up for their annoying traits in a big way. A very big way.

Over the past two years, I have met all sorts of French people. Doctors, chefs, homeless people, nuns, paramedics, taxi drivers, fleamarket vendors, French Muslims, shopkeepers, restaurant owners, rich French, poor French, funny French, rude French, florist, hairdressers… You name it, I have met them. And no matter who they are or what they do, they say one thing to me. And that one thing melts my heart every time. It redeems them for everything. And there is nothing equivalent in America.

What is this thing that they say to me? It is something so gentle, so profound, so thoughtful, so wise, so historic, so encompassing that I feel like the French really have a soul like no one else.

The first time I heard it I was at Notre Dame Church. There was a nun dressed in a gray habit smiling at me as I was about to leave. I asked her if I could have a picture with her because she was so freaking adorable. After we took our picture, she placed her hands on top of my hands and said two words. These two magical words: “Bon Courage.” It basically means to wish someone well but when people say it to me it literally means, “Have Courage.” In all my life, I have never heard anything as wonderful as that. I just think it’s such a noble thing to say, “Bon Courage.” Those two words mean so much. Courage is everything for me, and without it, I will crumble.

I started to think this week about what courage really is. It’s different than being daring. Daring has a sense of adventure to it. Courage is doing something that scares you that does not necessarily have a fun side effect. I am not daring but I am courageous. I have not always been courageous by choice but by force and necessity. Do I want to be courageous? Nope. I want to hide under a rock, mostly. However, I don’t have that choice. Having ALS, this disease forces you to be courageous. Not necessarily for yourself but for the people around you. I have to be courageous for my daughter. (I don’t have to be courageous for my husband because he has enough courage for both of us.)

I asked myself yesterday what is the most courageous thing I have ever done. For me, I think the most courageous thing that I have ever done is to face the reality of ALS. From day 2 after being diagnosed with ALS, 90% of the time I just march forward. Day 1 of being diagnosed with ALS was just a fucking blur but I pulled myself together by the second day. Not to toot my own horn, but I really did. I didn’t do it for me. I did it for Grace and it’s the best decision I’ve ever made. Did I want to go to the hospital to have a pacer inserted into my diaphragm so I could breathe better? Did I want my lungs to collapse like they did that day? Did I want to be in pain for eight weeks and become nearly addicted to oxycodone? Obviously not, but I did it anyway. I put my fear behind me and courageously went into that operating room… For Grace. It’s easy to be courageous for the love of your life.

 

This is me two weeks after my surgery waiting to go into the doctor's office for a post-op check-up. I am completely jacked-up on oxycodone and yet still in excruciating pain. Didn't think that I could go on...but I did.

 

 

 This little Italian Greyhound that I named Ines was my consolation prize. She got me through those tough eight weeks.

So whenever I hear the words, “Bon Courage”, it really touches me. My usual answer is, “Merci, je l’aurai.”

So now, it’s your turn. What is the most courageous thing you’ve ever done? Did you leave a bad marriage? Did you start your own business and leave a comfortable job? Did you go to AA? Did you raise a child on your own? Did you give a speech at the United Nations? Did you go outside of your comfort zone? What have you done to be courageous? And I’m talking about the absolute most courageous thing you have ever done. Not regular courage. It’s not bragging, it’s communicating, so tell me! Pat yourself on the back and expose yourself. Bon Courage!

Dose of Reality

We have to take a short break from the Lala Land that is Provence and have a dose of reality, my reality. Because I’m not one to keep secrets or sugarcoat the truth, I thought I’d tell you all just exactly how my Wednesday unfolded.

I had a prescheduled appointment with my Parisian ALS specialist, Dr. Meininger. It’s kind of our yearly checkup. Dr. Meininger and I go way back. I was diagnosed with ALS in New York in June 2011. Within three days of that diagnosis, my husband and I were on a flight to Paris to go see Dr. Meininger because supposedly, “He is the best.” Not to be a bitch, but in my mind no doctor is the best until he cures ALS. Oh, let me warn you, whenever I have to go to the hospital my super bitch superpowers take over. I have mercy on no one. I hate the cabdriver, I hate the gloomy Parisian weather, I hate the hospital, I hate the décor of the waiting room, I hate my husband, I hate my caregivers, and most of all I hate myself. The good news is that this only lasts until I am out of the hospital and back home watching Bravo’s Ladies of London.

By the time we got out of my apartment and into the cab on the way to the hospital, I had already said about 25 rude comments to no one in particular. The only saving grace about having to go to the hospital in Paris is that at least the drive is gorgeous. The driver took the route along the Seine River and I was silently passing judgment about everything I saw. I finally just had to laugh at myself. Why? Because we were driving by one of my favorite mansions of Paris, Hôtel Lambert, which has an incredible history and a controversial present. Once owned by the Rothschild’s and now owned by the brother of the Emir of Qatar who bought the house for a reported $111 million and has been doing a little “renovation work” since 2007. As we drove by the house, I said to myself, “When is that fucking house going to be finished?” I laughed because I wondered why I cared, why I thought it was any of my business, and why it was bothering me so much. Didn’t I have bigger things to worry about like what this doctor is going to say to me today? But no, my concerns were about the construction delays of a mansion in Paris.

Hôtel Lambert which is a house, not a hotel, is a 17th-century mansion in which Chopin composed, George Sand wrote and Voltaire lived with his mistress. Click HERE for the history of the house. I actually learned about Hôtel Lambert from my favorite book of all time, The Finest Houses of Paris. You can buy it HERE.

 

 

 There was a terrible fire during the renovations that cost irreparable damage to priceless ceiling frescoes.

 

 

 

Hôtel Lambert as it sits today which irritates me. 

We arrive to the hospital with my bad mood intact. Pitié-Salpêtrière Hôpital. I referred to it as, “The hospital that couldn’t save Princess Diana.” And for that reason, I will forever hold a grudge. It literally looks like a mental institute which I found out it used to be in the 1700s. I have to say that it is rather interesting that this is the hospital that the neurologist Dr. Charcot first discovered my disease, ALS, in the 1800s. In France, ALS is known as Maladie de Charcot. Driving deeper into the hospital I see a building called Babinski. I laughed and said, “Failed that test.” Dr. Babinski studied under Dr. Charcot at this shit hole of a hospital and his Babinski test can be a signal for ALS. Floods of memories came rushing back to haunt me regarding my first days of being diagnosed with ALS. And here I was, at the epicenter of ALS. Current mood: borderline violent.

 

Pitié-Salpêtrière Hôpital

 

 

The waiting room did not lift my spirits. I was surrounded by freaks with ALS. Oh wait, I’m one of them. I’m going to let you in on a little secret that you would never know, never detect unless you had ALS. When you are in a waiting filled with people with ALS, you are basically sitting with a room filled with ghosts. These people are not themselves. Their physical bodies may be right in front of you but their spirits and souls are somewhere else. You can see it in their eyes. We have a disease with no cure, a disease that ravishes your body like a rabid pitbull, and promises a grand finale of death by suffocation. This is not something that a human can comprehend, therapy it away, antibiotic it away, or even nary try to process. The only, only course of action with ALS is to escape. You have to escape yourself and your body and to go to a safe place. That’s why all of those people, including me, in the waiting room of an ALS clinic, aren’t really there. I knew all of this already so I just continued my day of bad behavior and rude thoughts. The lady next to me who came with her husband who had ALS looked like a prostitute, so I took a picture of her. The gentleman sitting across from me looked like he had ALS compounded with jaundice, so I took a picture of him. The lady sitting next to me with saliva dripping out of her mouth was making me sick and I decided that everyone in this room needed a fucking green juice. Why couldn’t I have gotten a prettier disease?

Here comes the great part, my discussion with my doctor.

Dr. Meininger spent the first half of our appointment basically telling me that no clinical trials were working. I listened to him say at least 345 times, “Clinical trial blah blah blah with a new drug called blah blah blah only worsened the ALS patients condition, so I’m not convinced.” I’m not convinced. I’m not convinced. I’m not convinced. Over and over and over he said this. How is someone supposed to be hopeful when the premier neurologist, Mr. ALS himself, has exactly zero to offer you. My only response was, “So then, how can I put myself out of his misery?” I think he was a little surprised that I had just asked him how to kill myself. I don’t think I was truly asking, I was just being facetious. Sort of.

Here comes the funny part.

Dr. Meininger, explained to me that there was a clinic in Paris that would help me “end my life.” Let’s back up a bit before the majority of you freak out. Let me just give you a scenario. If you were told, “You are going to choke on a fishbone and die on Tuesday” you would literally lose your mind until Tuesday. Imagine having that scenario for the past five years. That’s where I’ve been. You are not supposed to know how you are going to die, but I do and it follows me day in and day out until I finally reached the decision that I was going to get in front of this situation. I will be damned if I’m going to sit around and let ALS suffocate me. If anyone’s going to suffocate me, it’s going to be me. Or at least David.

However, Dr. Meininger said that in order to be accepted to the clinic I had to spend a week there “getting to know everyone.” What the fuck are you talking about? Why would I want to get to know everyone? I kid you not, Dr. Meininger said, “The clinic likes to get to know the people that they are going to kill.” I don’t know if it was lost in translation or because his English is only so-so, but I burst out laughing. I thought, “Really? My executioner wants to get to know me? What if they fall in love with me and won’t perform the final act? Do cats go to the vet a week before they are going to be put down due to their cat cancer so the vet can get to know them? I prefer to go like Marie Antoinette with someone wearing a black hood. Wham Bam, thank you ma’am. I’m in no position to make new friends. Don’t want to. I want to wake up on a Tuesday and die on a Tuesday, if you don’t mind.”

The doctor told me that this was not something that could be decided quickly. Really? You think I just started thinking about this? How about I’ve been thinking about this for 1580 days, thus far. I could see a look in his eye that maybe he wasn’t going to approve of this. And then, of course, because I am me, I thought to myself, “Look douche bag, you are supposed to be the expert with ALS and the only thing you can offer me is a medication that costs $1200 a month, has the side effect of liver disease, and will extend my life by two months. I think I’m going to start doctor shopping. They do it in New York so I’m sure I can do it in Paris. I will find a doctor who will follow my program.” I think my doctor saw my disappointment and agreed to make the necessary calls to the clinic when the time comes. And then, of course, because I am me, I asked if I could have the name of the place so I could do a little research. And by research, I meant that I wanted to check out the decor. You can bet your bottom dollar that I’m not going to die amongst ugly wallpaper. I figured I would use the week “getting to know the staff” and actually use the week to redecorate. I’m thinking de Gournay wallpaper (I deserve it, I am dying, for God sake) all of my paintings and picture frames, my Diptyque candle and all of my dishes. And my cashmere blanket. And my hot chai tea. There. That’s all I need.

Then Dr. Meininger told me that they would have to administer a morphine drip. “You mean a needle?” I asked. His answer was yes and so my answer was no. No, I don’t do needles. David will have to just suffocate me in my sleep in the comfort of my own home. With all of my bad behavior this week, he might just do it. :-)

Trust me, these are not the conversations that in my wildest dreams I could’ve imagined having, especially at my age. I’m not supposed to be talking about this. I’m supposed to be at work, having a taco at a random food truck, planning for the holidays, screaming at Gracie to clean her room, going on long weekends to Normandy with David and petting my dog. These are not normal Wednesday afternoon conversations. I don’t want to talk about all of this, I don’t even want to know about all of this.

The reason that I actually do have these conversations is because I need to know that “my end” is not going to be scary or painful. Five years ago I had no idea what the word “hospice” or “palliative care” was. Swear to God, I didn’t. Never heard of it. Let me also state that when I was first diagnosed with ALS, no one ever told me about how to control the end of ALS. So, subsequently I’ve been scared for five years. You would be to. I didn’t know that things could be controlled, that I could be gently put into a restful place without pain or fear. Sometimes this is all one needs to know. It’s called options. For some reason it brings me great peace. I realize that knowledge is power but in contrast, ignorance is also bliss. I like to ride the thin line between the two.

The good news is that I don’t need to decide any this now. Dr. Meininger said that I looked great and that I still had years ahead of me because the ALS has not spread above my shoulders which is nothing short of a miracle. Girlfriends, it ain’t over yet. So, if you guys will have this bobble head for a bit longer, I’ll be here.

 You would have thought someone would have brushed my hair. Guess not.

Because I’ve already opened this can of worms, here’s a question for all of you: What would all of you do if you had ALS? I’m not asking for your advice, but I would just generally like to know what you guys would do for yourselves. Be honest. Really think about it, what would you do? Would your religion get in the way? Would your family persuade your decision? Would you ride it out to the last moment? Would you opt to exit gracefully? What would you do? How would you do it? Would you make a big production out of it? Would you tell everyone or would you go quietly? Pray tell…