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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…

 

99 comments:

  1. You are such a great writer, you make ALS real. Your humor and talent are ever present. I would hang on as long as possible if I still felt love for my family, friends, the life I have ... but I like knowing when I feel the need to leave I could do so in a peaceful, safe way. What if the pillow slipped and you had to look in David's eyes? love and prayers for you and your family.

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  2. Okay I think I laughed hardest at this post. I love imagining what awful things you were mumbling driving past this magnificent house "in the wrong hands". And then that there needs to be an orientation to the assisted suicide?! Do you think they have a pamphlet that says "make friends you'll keep the rest of your life"? Ellie you need a reality show or documentary because these are huge conversations and you're the perfect one to start them. My grandmother is deep in Lewy Body Dementia and basically lives in a terrible waking coma. I wish every day that she would pass away and finally escape and there's not a damn thing anyone can do in that direction here. I so respect you for speaking as yourself about these things because it makes ALS real and it now means something to me other than "a terrible disease".
    So if I had ALS, at least how I think I'd handle ALS, would be to start cooking and freezing shit like mad so I could still control the holidays as long as possible. Then I would buy and eat and drink everything. I would make my friends and family sit through endless dinners every night until they were like "so...uh...how long does your doctor think you have left....?" And when I couldn't cook anymore or got too fat to fit through the narrow aisles at the liquor store, I would go to Egypt (or probably just the Luxor because I hate long flights) and find an asp and have it bite me Cleopatra style while FaceTiming my ex boyfriend (the important one). He'd get a good laugh and would love the pageantry. And I want my tombstone to say "I am literally dead right now". I'm sure you hate it by now when people tell you you're brave, it's become a very overused word. But in its truest meaning, you really are--Brave.

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    1. You are literally the love of my life.

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    2. Stephan Andrew would have to come and do my hair on the day I died!
      LOL!
      Karen

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  3. Who gives a shit what I would do??? If I get a splinter I need morphine. Yes, I would tell the whole fucking world and as you know...people don't understand what ALS is so I'm going to advise you to go ahead and add clitoral cancer to your story. It's easier. Yes, I tell people I have MS and clitoral cancer. They'll think it's a coincidence that two friends have the same type of cancer. Maybe they will stay away and quit staring at you. Everything that stupid doctor said is everything we already knew. NO ONE can even begin to fathom what it's like to have ALS until they literally have spent a week in your body. You have a lot of years left!!! You are weary right now but I know this passes the minute something fun or exciting crosses your path. As your friend and someone that loves you beyond words, I support you leaving this earth any way that you choose. Here is the catch..."I'm going to make you look me in the eyes and tell me personally "Debbie, I can't do this one more second". Yes, I will throw myself on your floor, scream and cry, and certainly request a little morphine for myself but I love you enough to know when you say you are ready, I understand. That's not going to happen for a while!! If I had a private jet I would arrange for you to be flown to Maui where the sunshine and ocean have healing powers. We would sit lounge on the beach all day in our cabanas and eat fresh fruit and catch up on all our gossip. Since that's not possible, you just say when and Kelsey and I will be on the next flight out to Paris. I'll fill a suitcase with all of your American favorites. David can cuss us out but I'll tell him, to STFU. We are the support team!!! He can go see his mom because we need our girl time. I love you girl!! You know it. I'll stop my world the second you want company. Kelsey will come too, she loves her Ellie.

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    1. Relax, spaz, I'm not going anywhere yet. I have a lot of people to harass before I leave and it could take years! My doctor said I looked really good so you're going to have me around for a lot longer. Love you

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    2. I love this more than words can say... What a darling friend you have, Miss Ellie!! Hope you are having an awesome day.

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  4. I would fuckin kill myself. Jeezus Christ you are a rock star.

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  5. Ellie
    First off I would hope I could have the strength and courage as you do. I would want to choose my exit. If a person has to be stricken with ALS you should at least have the power to choose the time that you leave this world. It is so hard to even imagine the hell of fighting this disease. Absolutely my family would be told in advance. It should be as peaceful as possible. I would want the same from them. It would be a Big deal because you are a Big deal Ellie! Peace and comfort. Hugs and prayers from Kansas to you!
    Dee Ann

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  6. I love the fact that you take photos of folks. Humorous, yes, but it also gives a face to a disease that even in this day and age, about which precious little is known. As for what I would do. I can honestly say I don't know. Lame, I know. I am 42 and have two kids (18 and 15), and I am still getting over the shock of losing my beloved Daddy whom passed away 8+ years ago after being sick for almost 12 years. Watching him die little by little, each day a bit worse than the previous took its toll, but I also learned what I do not want for myself. I am a planner, but I am also a fighter. The planner in me would make funeral arrangement with a florist, decorator, and minister; make sure my estate planning was done, and threaten my kid with haunting them if they deviated even one iota from my plans. The fighter in me would probably do what you are doing: find the best healthcare I could, research everything because information is my friend, and try every way possible to live with as much grace and dignity as I could. Granted, with my mouth and "attitude problem," that might take some doing.

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  7. Oh boy, this is a hard one. However, because I have children, I would want to hang on to every day that God gave me. I would drink the green juice and fight just as you have been doing.

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  8. I spent a week last March caring for my dying mother who had Parkinson's Disease. That week started with an incapacitating stroke leaving her unable to talk, respond or communicate. She had a DNR and living will in place, so she had made sure no extraordinary measures were taken to keep her alive in that condition. However, I became convinced that was not enough. A week is a long damn time to die. As you can imagine, I have done a lot of thinking about the question you raised ever since. I wish there was a place near me as you have in Paris. I would spend the week there to get the "getting know you period" out of the way long before I actually needed to make that hard decision - not the decision about how, the decision about when. That would free me to live my life, knowing I could wait until the last possible moment until I was absolutely, positively sure I wanted to die. I would also make sure the "place" knew it was empowered to act quickly if I came to them in a coma or otherwise unresponsive. I would write letters to all the people I love, essentially letting them know the ways in which I love them, that it is my decision to die in this way, that I am sure it is the right thing to do, and that they need not feel any guilt for not talking me out of it. That is important to me, because I know it will be important to them. I would not let them weigh in on the decision beforehand because it would just create that horrifying guilt I am hoping they can escape, and I would most certainly not want to argue with any of my still Catholic siblings. I hope I can die quickly and painlessly when my time comes. That does not seem like too much to expect. The New York Times did a piece on an extraordinary women, Professor Emily Bem, and her struggles with this question: http://www.nytimes.com/2015/05/17/magazine/the-last-day-of-her-life.html?_r=0

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    1. I was thinking of this exact same article...

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  9. I'd like to think I'd be brave and beautiful and enjoying the little things but a recent foot break tells me I'd be pissed and whiny most of the time. Better to put my energy into my funeral and if they dare play Be Not Afraid I'd rise from the dead and say, "For God's sake I needed that one before I died. For all that is holy play some Stevie Wonder." That shit doesn't fly with the Catholics so I'd petition someone about that. All the way to the top. Frank seems like he might be a Motown kind of guy.

    What matters more, though, is that you are a writer of such depth it takes my breath away.

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  10. I don't believe anyone can truly know what they would do until they are in this situation.
    Sheila in Port Townsend

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    1. Oh my God, Ellie. As of this moment I love you. Melanie

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    2. Oh, sorry, that's just how I felt at the time. I'm sick right now, and I guess I just didn't understand.
      Love your recent blogs even more than ever, by the way.
      Sheila in Port Townsend

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  11. Another post which made me laugh and cry. Ellie you are so funny and so honest, I love it!
    What would I do, well I would be very influenced by my kids and my husband for sure, but religion would not get in the way.
    Thank God for an option to go peacefully on one's own terms is all I can say... but bigger Thank God that you have years left!!!
    XO

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  12. You have a spine of steel, darling girl, made stronger I suspect by the ALS.. you are that kind of spirit.... giving laughter
    in the midst of it and surrounded by kindred souls who share and express your brand of humor. I would want to go peacefully,
    naturally if life allowed it....otherwise, I must re-read and re-read this entry in your blog to really contemplate my life-long value system to see if I have the spine and courage to ordain my own ending, so thought-provoking is your searching question...
    I do know that whatever, I would try to wrap myself in the wisdom and humor you generate for the rest of us each time you
    blog amidst the many blogs to come...because you are looking supreme, especially from the neck up and have so much
    more give. Just love you, little one.

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  13. Good grief. Once again, I'm in the comments section. I NEVER leave comments on blogs because blogs are boring. Except your blog. You are the most amazing writer, chronicling both what is around you and your amazing interior life. You're the rarest rare bird. Blah blah blah to the majority of nice sweet rah rah commenters—except Stephen Andrew who's an original. Life's too short to be boring.

    Along a path that has included confused observer, primary caregiver, and deathbed choreographer, I decided to be in control of my final days. In my bed. Surrounded by people who love me (and, I suspect, the proverbial "absent friends" of loving toasts). Body bathed and anointed. Candles (Cire Trudon, Ottoman, not Spiritus Sancti). Catered. Music (playlist starts with Postmodern Jukebox and winds up with Leonard Cohen's Hallelujah). Morphine. Timed.

    Of one thing I am certain. Dying—mine and those I've witnessed—is a sacred passage. It should not be left to chance or addled, well-meaning family and friends. And for gawd's sake, I don't expect anyone to write a decent obit. (Note to self: organize notes and photos.)

    Ellie, you do all your readers such an honor by sharing your HUGE vitality, intelligence, wit and style—and the inside story of ALS.
    Never leave us. Sending huge waves of love from the Pac NW.

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    1. I love that your event will be catered. No wonder we are friends.

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  14. MAKE A BIG PRODUCTION.............because that's ME!I want to be on my SIDE NOT my back.I want a double coffin so the husband can be slide in when the time comes...............I will wear a TIARA with LOADS of FLOWERS...........I think I will DON a CASHMERE BLANKET as I tend to be cold.I WANT A GORGEOUS CEMENT MAUSOLEUM with URNS and wreaths and pretty detail.I WANT I WANT I WANT YOU TO live on and on and on..................XOXOXO

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  15. Thanks for the reality check. I like your blog because I like believing it gives you the opportunity to be YOU. Sometimes we can get lost in your adventures and while that's not a bad thing being "real" keeps us in touch with you.
    While I was reading today's blog I received your package from last week. I chose something that I could touch often, I'm like that. I chose something that I felt connected me to you and your family. If I were there I'd be holding your hand the entire time we visited. Thanks for touching my heart...stay the course

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  16. I do not know what I would do. I sat with my mother, dying of MS and the dying part took about two weeks. I sat by the bed and stared at her constantly, trying to remember her face but her face really wasn't her face anymore for a long time - you know what I mean. Her voice was already gone for a long time-so who knows that that was like. I think maybe what I would do is take tons of photos, and recordings so my people would see me and hear me later. But maybe that wouldn't matter to them. I does to me in some odd way. I guess I would stare at my children constantly if they would sit still long enough. I would have a constant infusion of margarita's, fall asleep and start over. I would want to have lipstick because I am vain, but I guess I really really don't know. I think I might cry constantly but I think you rally when you are about to go and be calm? I don't know that either. My mother was ready and she seemed calm. I would only eat ice cream not the terrible carrots they forced down mom's mouth daily, like vitamins would make her stand up again.

    I do know, not long ago I discovered you, and you are a giant beautiful redwood in a forest, just like my mom. You are the second bravest person I now "know". Oh-I would eat all the Valentine chocolates in those heart boxes that could get my hands on.... Blessings.
    Laura

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  17. My mother died a few years ago after having alzheimers for 10 years. I am divorced and promised myself that I would not put my two grown married sons through that if I were to get sick. My current plan to end it all would be to drive into my garage and leave the car running with the door shut! Of course timing would be critical - do it before I forgot but not too soon either! I have young grand children!

    All the best to you. I enjoy your blog so much! And the comments! I burst out laughing with your comment to Sheila!

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  18. Speechless!
    Death is everybody's destiny, so why should we be afraid? Live long Ellie dear, live long!

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  19. I don't know you and can't even recall how I got onto your blog but I have to say I read it religiously (no pun intended)... I would feel exactly as you do but would be too worried about what others think to say it! Thank you.... You're far too young and obviously passionate and opinionated (not a bad thing) about things in life. Sometimes life just sucks and although the word is overused, just plain UNFAIR... we should all live to a ripe old age. I'd choose my when and how (already decided when I had a cancer scare) given the opportunity.... nobody should suffer any longer than necessary when life no longer becomes worth living.... for everyone that time is different.... Hoping you find joy in as many ways and in as many days as you can....Should I outlive you I will miss reading your thoughts...

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  20. I am so happy to know last year's crappy Christmas tree will not be your last!

    A roomful of beautiful flowers and people I love. A cellist playing softly. Silk. The best champagne. Wait! That was my wedding. Still...

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  21. I think I would be absolutely furious with everything and everyone for much of the time and very scared. But I'd like to think I would keep a sense of humour, drive everyone nuts and make it all about me. I would stop thinking and start saying. I would definitely drink. A LOT. I would hope to be like you - still caring about the finer things in life, surrounding myself with gorgeousness and people that adore me (lucky you, there are so many) I forget you have ALS until you remind us - you write with such vim, vigour and vivacity. I would also tell the husband that he was absolutely not allowed to re-marry - merely spend his remaining years in Victorian style mourning.

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  22. Dear Ellie, I think I would go to the end as gracefully as possible and then take matters into my own hand. Thank you for sharing your wit, your stories, your family and friends with us, your readers. There has been no one who has inspired me quite like you do, ever. You are a force to be reckoned with and I am very happy you will be around for a long time giving your husband hell, mothering your sweet Gracie and living the beautiful life you have. Jeanne Smith

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  23. Since my Mom died from pancreatic cancer (=death sentence) a few years ago, I’ve thought a lot about what I would do in such a situation (and what I could’ve done better for her....). Your words hit the mark for me: "I didn’t know that things could be controlled, that I could be gently put into a restful place without pain or fear.” as I often thought that in a number of health situation, I’d rather end my life at some point. And maybe I wouldn’t, because I am not there and can’t really tell, but I think one needs to have the option. May it help you face the ugly side of ALS for a long time...

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  24. You're brave and beautiful and strong. There are times when I come here and I can't bear to read or leave a comment because I tend to be a complainer and I really have nothing to complain about. I guess you're teaching me a few lessons about life.

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  25. First of all, and most important...”you look good and the ALS hasn't spread above your shoulders”! SUCH GREAT NEWS, Ellie! Second, that hospital really is hideous and looks like it might be the ideal employer for Nurse Ratched (of Cuckoo’s Nest fame). As for what I would do if I were I diagnosed with ALS, I hope I would fight like hell and try to kick its ass – just like you do every day. I hope I would continue to be the best mother I could be to my daughter, and do whatever I could to be there for her as long as possible – just like you are. I hope I would be cramming as many of the wonderful things in life into the days and nights that God saw fit to give me – just like you are (and what we should all be doing anyway). I hope I would continue to try to find a way to enhance someone else’s life every day – just like you do with your blog, Ellie. And before the end came too near, I’d have a lovely, elegant, raucous party, the details of which were all exclusively planned and controlled by ME, and invite everyone I cared about (who wants to miss their own wake, after all!). More than likely, I’d opt for the earlier train out (after saying my farewells…I don’t think I would want my daughter to remember the last moment) in full hair and make-up, and wearing something spectacular and extravagant. Knowing me, I’d make the doctor check the news one more time before I’d be willing to go! But back to you…you’re not going anywhere for a long, long, LONG time…too much love holding you here. XOXO / Nancy

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  26. I will come back later, I am laughing and crying now!

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  27. Once again you've made me laugh and cry! I just lost my grandmother and stepfather in the course of two months. First off I'd like to thank you for getting me through some tough days. That said I'd go for the morphine. Not easy to get I've learned, but it can make dying so much more peaceful. We are all face with dying and we deserve to do it with respect. I'm with you on redecorating by the way. My grandmother died in the most ugliest nursing home. Would it have killed them to paint the place? As an interior designer it outrages me to see such conditions! Ellie THANK YOU for sharing your life, the good and the ugly. I'm glad you'll be around for awhile more bringing beauty to the world.

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    1. Not sure why you are saying morphine is hard to get.
      Sheila in Port Townsend

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    2. Hi Sheila, I live in Bellevue. I've experience some awful situations with nursing staff who are reluctant to give morphine. It happened with a couple of family members who were placed in a nursing facility. However, had the doctors agreed to hospice care this would not have happened. Hospice care is amazing, but it can be difficult to get sometimes. Under hospice care we would have been able to administer the morphine ourselves. We were fortunate to have such care for my step father who died from fibrosis of the lung. He struggled to breath at the end, but once we were able to give him the morphine his breathing was so much easier. His death was so peaceful. This is the way I would choose to go, if possible.
      Has anyone else had a difficult time getting hospice for a loved one?

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  28. hospice and good drugs - keep it simple sister

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    1. Best reply here!
      Sheila in Port Townsend

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  29. After I ate every damn thing I wanted to, watched every damn HW show I felt like, and every TCM movie and rom-com film, I would arrange for performers of every music genre to come to bedside and take turns serenading me as I was steadily pumped with whatever it is that they give you to ease your passage. Then I would kick off my mortal coil, and vamoose. Love your blog, appreciate you to the heavens, and am thrilled to know you will be around for lots more time. Big hugs.

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  30. Ellie
    Death itself is not bad. I have been dead and can tell you that. At the age of 25 I died and was revived three times, I have always been very aware of how lucky I have been. I have lived my life with the understanding that life is short and brutal or short and delicious. I choose to think of life as delicious and every bite to be savored. Death isn’t cruel or kind it just is. It is the lead up to crossing that final finish line that is the tough part. As an individual and as a professional nurse I have confronted just about every phase involved in the process of dying. From those individuals who are happy to be leaving to those individuals who are in fear right up to their last breath. I talk about death daily with my patients. What I have learned is this we all want to have some control over our own passing if we can. No one wants to leave life without personal dignity intact. The ability to say “I want this type of passing” is infinitely significant to most of us. Learning about the tangible process of death comforts most of my patients. It is like someone telling you about a monster that lives under your bed that will only come out once a night to lick your left foot and then he goes back to sleep. If you know what is happening you think “Oh well, no problem it is just my underbed monster coming to lick my foot. If you don’t know what the hell this thing is licking your foot is you have just destroyed your room and probably damn near the entire house and Hell -You are really thinking about burning down the damn house to get rid of the fracking thing too! Fear of the unknown is much, much worse than any underbed monster. There is never an easy way to leave life it is all we know. We want to hang on to the smell of coffee, the feel of a kiss and the touch of our children’s hand but I have learned from my patients that there is a time when you are ready to leave. They have told me one day they just know that they have done all that they have needed to do and now is their time. As one of my lovely patients one time told me “I have planted my last garden and given my last memories away, I am like the summer dandelions ready to float away myself now. I am light now and can drift with the summer winds.” She was lovely in life and death and I hope that I can pass with as much grace and dignity as she did.
    I have already informed my family that I have a DNR as does my mother and both of us never wish for any life saving measures, we are both nurses and have witnessed the horrifying parts of life saving measures many times. I have already decided to have an enormous party before my passing so that I could tell everyone what they meant to me the good, the bad and the ugly. (After all I’m dying so you really can say whatever, to hell with good manners!) I have long ago decided that if I am lucky enough to still be able to make choices about my end I plan to swim out into the ocean on a lovely summer morning (only if the water is warm- I don’t want to die freezing to death in cold ocean water-one more day of life probably wouldn’t kill me after all) and swim for the horizon, the bottle of champagne I plan to drink before I swim will make it a little fuzzy around the edges. Not to worry I have spent time thinking about the cute suit that I also plan to wear. I figure this way I will make it into the news at least once in my life also! When it comes to the question of religion I don’t have any but I have decided that if there is a God then logically he/she/it would not want people to suffer needlessly so he/she/it would understand of this necessity of control at end of your life. As my one patient told me one time “Life was sweet and then it wasn’t- so now I have to go”.

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    1. Dear Annonymous: Your post is as touching as Elle's...many tears here...the woman who planted her last garden and given her memories away...oh my...how touching.

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    2. Dear Anonymous, I have almost died 17 years ago, when I was 46 years old and the sentiment and the relief I felt during it, was amazing. Something very sweet swept over me and I didnt had any cares. I hope my real death will be the same. I loved what you wrote very much.

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    3. Thank you for sharing the moving and profound patient comments that express the wisdom and tenderness that can prevail at the end of life. Thanks to Hospice, a world of understanding is opening to us who seek
      it.

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  31. Dearest Ellie, whenever you write this type of posts, I sob, for you, for Gracie and mainly for the world that one day will have to continue without you. I do not know if I would have your courage or your strength. I would want to know that there is an option for me to exit gracefully once the time came, I am not religious, the difficulty for me would be deciding when it was time to exit and to have at least on person that you literally trust with your life to help when you cannot help yourself. Of course it would have to be in a beautiful place with pratesi sheets, an Hermes cashmere throw and beautiful flowers everywhere, and of course opera playing, I am not exiting this world in a non glamours way!
    I keep thinking about that stupid Viagra pill and I want to scream at someone to get a grip and prioritize! I want them to come up with a drug so that you and I can go shopping and be mean bitches together and laugh about it til we cry from laughing so hard. You are amazing, and you give me the courage to face the difficult questions.
    Thank you Ellie, I love you.
    Lourdes

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  32. Oh you make me laugh. I have lost 2 friends to ALS. Thank you for making me laugh about it. What would I do? EAT ALL THE ICE CREAM, DRINK ALL THE WINE, SMOKE ALL THE CIGARETTES, get FAT FAT FAT, then when I could not do that anymore, I might check into that clinic. Ask for the really good drugs. I think that's what I would do.

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  33. Growing up with a parent that had multiple sclerosis and who sat down and gave up and actually enjoyed being disabled and making all our lives hell and waited for 20 years to die, I really can't give an answer. Your attitude makes a world of difference but can anybody every know how they will react to a disease like this? I don't know, I would hope that I would fight with everything in me and that my child and husband will appreciate it but I also don't want to leave the legacy my father left - damaged children and a bitter wife.

    You are amazing and I admire you to no end.

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  34. My goodness! So happy to read the f*****g ALS has not spread upwards. And yet, in your position, I would definitely also be considering how my life would end. And I would, like you, want to have as much control as possible. I've had asthma my whole life and not being able to breathe is horrific and scary and, for me, would be the worst part of having ALS (I suspect, but, as you say, I don't really know, do I?). I'm glad that finally you know more about having some comforting control at the end....you should not have had to live these last 5 years wondering and worrying about that.
    Anyway, like Rebecca I would eat all the food, smoke all the cigs, etc. Oops, I'm already fat, though. ;-) Stephen's take is hilarious!
    Today I feel ridiculously comforted that you have shared this with us, and so, so grateful that you're going to be around a lot longer. Thank you for your beautiful spirit, Ellie.

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  35. I came this close to picking up the phone this morning and calling you because I was - this was the phrase that came to my mind - "colossally sad" after having dropped my Mom and her Husband off at the airport. This close. But then I thought that I might as well check my email since I haven't been on my computer all week and this was waiting for me at the top of the list, as it should be. And now I am crying and crying and crying while I think about your words and those of all of the others here. Plus, I know that you would just have comforted me if I had called and not even made an illusion to this post, which makes me cry even more - those are the angry tears that you have ALS.

    Actually, I have thought about this question ever since I first found you (thanks to La Contessa), which is coming up on about a year now. Here is the thing - and I know in advance that you are going to totally roll your eyes at this response - I would have to be practical about it. I don't have insurance (and I know that a lot of what you pay is not covered anyway) and as I don't have any money, nor does my family (and I certainly wouldn't want to pull them down with me, so to speak), I think that I would need to be prepared to take my leave depending on how rapidly I declined physically - and just hoping that I even had the funds to do that correctly and in peace. But if that was in order, I can also imagine just bowing out pretty quickly too. You know, I am well aware that I have had a good run - I have seen and done more than I ever could have imagined, I already eat and drink what I want, I appreciate the big and little things...and I don't have children either. So maybe I would just go back to the States to spend some time with my Mom, her Husband and my Sister for a bit then return to Provence to be with my Honey, who I know I could count upon, and my dogs and there you go.

    That your doc said that you are looking good is just the biggest fucking halo around these clouds. You are loved by so very many of us who want with all their hearts for you to be around as long as possible. Because yes, there is still so much left for you to do. And besides, I am already planning the menu for our first Girls Night In Provence...there are only cocktails involved so far. :)

    Sending you so much Love and Strength and a bolt of this gorgeous sun outside my window,
    H

    PS. J&V are so fired for not brushing your hair.

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  36. You are such a brave person. I imagine your words are what my Mom would have said if ALS had not taken her voice. What would I do, believe me I have thought about it. I am a person of faith and hope that would carry me though to finish the battle. Having said that I would never judge another decision.

    I just love your how you are dealing with it - humor and truth!

    Keep fighting and keep blogging - you are great.

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  37. Have been reading your blog for years now with great pleasure; today feel I have something to share. The same friend who linked me to your blog sent this yesterday.
    http://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?share=12437eb865
    With admiration and affection

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  38. I would probably go very quietly. I'll make sure to say goodbye to the people I care about but without letting them know it's the last one. I would not be able to remain brave and have a proper face on if surrounded by people. Probably no last meal or anything pompous like that. I am pretty sure I would want to be there for everyone as long as possible though. Love to you, Ellie.

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  39. Hi Ellie, I could wax lyrical about a lot of sentimental clap trap, but you didn't ask about that so...if I could choose I'd rent Mussenden Temple for the day - look it up: it's a beautiful folly perched on a cliff on the Northern Irish coast overlooking a 10 mile white sand beach where the roar of the Altantic ocean is deafening. I'd have my family & dog with me, a roaring fire, beautiful music and gently slip away. Suzi

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  40. Hi Ellie, this is my first time commenting here. You’re so courageous and I admire you because no matter what happens, you love life and never lose your sense of humor. I’ve been to Batiment Babinski with my French husband when he had brain surgery for a tumor (he’s ok now) and done many of the same things as you which shows me that you tell it like it is.

    This reminds me of Oscar Wilde’s last words “Either this wallpaper goes, or I do.” But I don’t think you’re going anytime soon. Please keep inspiring us and making us laugh! xoxo

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  41. You are just the fucking coolest. That is all.

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  42. Ellie, you are incredible and I wish you would write a book very soon.
    Your posts are priceless, you make us laugh you make us cry, you inspire beyond belief!
    If I knew what was coming, I would live life to its fullest like a crazy woman, then plan to go out at my choice, with grace and dignity, and very quickly!

    xoxo
    Karena
    The Arts by Karena
    Featuring India Hicks

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  43. do not go.. stay alive.. you inspire so many people with your stories. love u

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  44. I am so grateful to have stumbled onto your blog. You are an amazing person and wonderful writer with depth. Your life should be on Bravo TV. When my time comes, I hope it is painless and fast but thats probably what we all want.
    Many more days for you because you have so much to say. Bless you.

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  45. This is such as good discussion Ellie.
    II would like to plan ahead. I would prefer late afternoon, in late spring, with a bouquet of zinnias, daisies, and forget-me-nots from my garden. A sponge bath scented with lavender and a freshly pressed white lawn cotton nightgown. Someone I love lying next to me softly talking about pleasant memories.
    Sending my love.

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  46. Dear Ellie I do not know what I would do and that is something that we can only know at each moment of our life. One moment ata time. Being in Paris right now makes me feel closer to you and that is powerful. You have given me so much happiness and insight into life and love and I thank you for that. I wish you peace and continuation of your humor that has certainly given me and others such pleasure.I love you and wait for that miracle to come soon! Susan NYC

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  47. Hotel Lambert restoration annoys the hell out of me too! I do not know what I would do re ALS but one day at a time is the only answer. Being inParis right now makes me happy. I am in the city where the woman that makes me laugh and cry and laugh again outloud lives. Thank you. I love you. And that f###ing miracle is just around the corner and your blog will announce it! Love Susan NYC

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  48. You are pretty fabulous. You know that. You are told this by everyone all the time. Even at your lowest point you are 'good enough'.
    When my daughter was little I used to worry terribly about being a perfect mother, the right kind of mother, the mother she deserved, the mother I didn't have. One day in therapy when I was sharing my angst about all that, my therapist said something which I've used about many things for a lot of years. She said that what kids need, in order to come out okay, is a 'good enough' mother.
    And so, I hope that you will ride this out as long as it is, 'good enough', since even in that state you receive all the beauty around you and generously share it with all of us and your family. Thank you, Ellie.
    As for what I'll do...I'm around as long as it's good enough.
    Candace

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  49. We are allowed to return the unconditional love we receive from out pets when we put them down to prevent their suffering. It is not an easy decision but we do it out of love, and I say it is a backward society that does not honor one's right make the same choice for themselves. I hope I will be brave enough to take that route out. Having CHF, which also ends with suffocation, I am grateful for the people who work and promote the right-to-die with dignity. It is very comforting to the sick to have an option out of suffering. i believe it should be an inalienable right to choose.

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  50. As to your question as to "What would I do"? Wow, I'm sure I would be a raving Bitch to everyone around me and would not have to worry about making friends with the people at assisted suicide because my dear sweet daughter (the paramedic) or my husband (the grouch) would probably push me off a bridge to save some money and figure that is what I really wanted anyway. I worked at a church for 7 years as their secretary, I also attended services there. One of our Church Family had ALS. He was such a great guy, and like you he never let it get in his way of anything that he wanted to do. He and his wife took trips all over the world and used his money to help others. I guess I would want to believe that I would be like him but in all likeliness I wouldn't. What I do know though is that I love your blog, your humor, and wit, and all the beautiful places you take me. Looking for a long long relationship here with you. Always look forward to your next post!

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  51. I've been to 2 funerals for my family in the last 7 weeks. Neither of them had a high quality of life at the end. I'd go in hard with the morphine, because pain is not my friend, and I'd want my loved ones there. My favourite things about adulthood are options and choice (you have to love autonomy) and I'd like to control how the candle was snuffed out (so to speak). Wishing you strength. Might go and dip into my copy of the Finest Houses of Paris now. x

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  52. Oh ellie. I don't know how you stay so upbeat and positive living with ALS. Every so often there is,a post like this day when I feel like all hope is lost but even then you make me laugh. I think alot about dying which is so nuts because I am well and healthy...as far as I know. It just goes to show that I have nothing important to think about. I am so amazed by you. This struggle every day and still ypu find humor and joy and beauty in things. I know I would be miserable. I am not a fighter. I would try to do and see as much as I could and then I would kill myself in a way that would ensure my death. Maybe suck on the tailpipe of the car...they say it is very peaceful. Maybe I would travel to Oregon where you can kill yourself legally. That would be it. I would look at pictures listen to music say I'm sorry to those I've wronged tell people I love them .forgive others.try to find my husband a new wife but only after I've gotten rid of all my jewelry and clothes and furs...that bitch isn't getting my stuff. Haha. But honestly I hope I have enough time before I die to do all those things but not too much time. I do not want to linger. Stay with us for many years ellie. We admire you respect you and love you. Xo

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  53. Ok, I have thought about this now. I am not as eloquent as you or others here, but here goes. I hope I have the courage to make an active choice while I am still able. I have a fear of "nursing homes" and I don't want to die in a sterile, ugly hospital. I want to die at home, with my beloved cat of 17 years. She has been a comfort and joy to me through some difficult times. Not your kind of difficult, but still. I don't have a lot of family but the ones I have I don't want them to have to watch. I wish there was a gas that would enable me and Baby to go peacefully at the same time. Otherwise, I would be worried sick about her. ( You might be laughing, but I am serious) I would have my books and flowers and eat a wonderful meal, probably fried chicken, mashed potatoes and gravy! The Midwest in me :-)) Maybe a magazine with beautiful pictures to flip through as I drift away. Can you tell I have really gotten into this? Oh, and a joint! And music! I haven't picked that out, yet. Anyway, I do not know how you deal with your situation, I would be mad as hell all the time. You have brought me joy and laughter as well as tears. Keep on as long as YOU WANT TO! Giant hugs! Oh boy, can I really hit publish? Aack!!!

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  54. You are brave, inspiring and funny all at the same time. And did I forget to mention truthful! Your voice gives pleasure to so many people. You deserve the very best and that includes how to depart this earth. I know you'll figure it out when the time comes in many, many, mnay more years from now

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  55. Ellie, if you're still able to joke about the wallpaper - ala Oscar Wilde - you'll be here for a while. When it's that time for me, I'd say goodbye to my family and friends and pull the plug.

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  56. Dear Ellie, sometimes I am afraid to pull up your blog for fear that it won't be there...and never will be there again. But after this post I know that you are like my used-to-be favorite tv show...Survivor....and that you are going to OUTWIT OUTPLAY and hopefully OUTLAST us all !! The green juice and superfood is making you an Energizer bunny.....you keep going !
    As for myself, all I know is I don't want any picture of me on the obit page and no open casket, either. Love and peace to you.

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  57. I had to ponder this one . Last day - Big time Beach Day . Lots of dogs and kids running , swimming , ball catching , boogie boarding , bon fire , s'mores . Me : a ton of margaritas , pass out and dump me in the ocean .

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  58. To the ladies who consider opting for gas from the car's tailpipe - consider that will turn your face purple and bloated; not a pretty sight for the family member that has to identify you! For me, I hadn't considered going in a well decorated room, but since you mentioned it Ellie, now I must have that. I'd rent a small cottage by the ocean and have it decorated to my liking (I can run up the credit cards and not worry about having to pay off the bills, for once - hah! - and hubby wouldn't be responsible for the bills since the cards would be in my name only). I'd make sure I had fabulous lounging pajamas, I'd smoke all the medical marijuana I wanted to, smoke cigarettes again (it's been decades), drink fancy vodka drinks (its been years also)...then if there was any pain, I'd go for the morphine drip. I have young sons, so I would say good bye to them, and my brother before, but I wouldn't want them to witness my going. I was at his bedside when we removed the oxygen from my 19-year old nephew (muscular dystrophy), and it was the saddest day; I don't want my loved ones to have a memory like that.
    Instead, I'd just want my hubby to hold my hand, and we could tell stories and joke as we always do, until the injection puts me into a final painless, marijuana-happy sleep, as I hear the waves crashing in the distance. Thank you Ellie - you're an absolute wonder.

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  59. Dear Ellie, you are fabulous! I didn´t know that Charcot discovered ALS. He was one of the guys that discovered the disease I have too and they decided to name it after themselves resulting in the ugly name "Charcot Marie Tooth". Tooth?!

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  60. If I had ALS I would do it exactly like you. But preferably in Paris like you. And live my time with gusto like you and keep on fighting like you and exercise my passions like you and live to the fullest of my abilities like you.

    Great post in every way.

    Note: Morphine is SO good. Knowing I could go out with morphine would give me peace. However, spending a week in the dying place gives me the creeps.

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  61. Hi Ellie! What a great question and I appreciate what people have said on this topic. Had to think hard about this and based on who I am today this is what I think I'd do. I have had excellent health so far. I am a woman of faith and believe that God has my best interest at heart and that he loves me like crazy and he would give me the grace to go through whatever happens! I trust him to know how much I can handle so I would not take my own life. However, learning about ALS through your posts I would probably beg God to take me. I am a wimp about pain so I think the begging would start early. And, I'd be grouchy on my off days and sometimes enjoy being so. (Ellie, knowing that you might die by choking, how can you to eat? I think I'd stop eating to buy some time! :)) On the flip side, knowing that I was dying I hope I'd be smart enough to take the opportunity to put everything in order and be as ready as I can to move on. I'd make sure I was in right standing with my friends and family and would try hard to not make them feel bad about my disease and not pity me and I would live as best as I could right to the end. I would plan my funeral so no-one had to deal with that - don't have details yet. Again, thanks for being real Ellie. I enjoy your posts.

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  62. Dear Ellie, I have been thinking about your question a lot recently because one of our dear friends is very ill with cancer that is spreading too fast, and is considering going to Switzerland where they have been helping people to die with dignity for years. Thank goodness these options do exist.
    Your courage and attitude amazes us all, if I had half your energy and spunk I' be pleased.
    Hope to see you soon, Sharon
    xox

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  63. Dear Ellie,

    Thank you for making me think outside my head. Thank you for the most poignant post. Thank you for sharing.

    At first, I did what I always do, bury my head in the sand rather than think of your question. I am a giant ostrich. Yet, because I love you and your beautiful mind I decided that you are owed the respect of a reply. So a discipline to raise above and write to you.

    I would want a view of the beautiful sea and sky. Great music playing and my husband the love of my life holding my hand after being given massive drugs. But wait what about my son? Oh yes it is going to be an amazing room with a view and a great playlist so he can be there when I go to sleep. But if I can't control any of those details then please just the massive drugs. Please.

    May you have everything you want and everything you need.

    Wishing you lots of xoxoxoxox
    Elena

    PS I have been binge watching Rita on Netflix a Danish TV production (english subtitles) it is much better than any housewife (sorry Yolanda). Highly recommend!

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  64. My grandma passed from ALS and was living by herself up until 2 weeks before she passed. She really was something else!!!!! She went naturally and stuck it out. For the last three or four days she was "asleep" but could hear us (so they said, I wasn't too sure). She had a very peaceful ending ( to say the least). If mine was like hers I would stick it out and go when it was time. But if the situation was different I would defiantly do something different. I would have a party with all my friends and family. Say goodbye to all my close family (maybe have written them personal letters since with ALS talking will be nearly impossible). And tell them to set me free!!!!!!

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  65. Affreux Gros MonstreSeptember 20, 2015 at 6:34 AM

    Hi Ellie,

    I think I would hold on for the ones I love, trying the spend the day as well as possible while they're away (Music and food have always had a place of choice in my life).
    Then, when I would know for good that it has gotten too hard for me to stay, even if the only reason left id to be with them, I think I'd make the decision to go, without taking my family into account (at some point, I think staying with them wouldn't do them any good either).
    I can't say I would take religion into account since I don't believe in god, but anyway, which god would want to see someone suffer the unbearable ?
    I'd want to "go" at home, but I would probably have to go to Dignitas; I think I would want the one(s) I love to be with me then, I'm not sure leaving without telling them would do them any good, so I would let them decide whether they want to be there or not.
    Anyway, these options of yours seem to be long-term options; so let me suggest you a few shorter term -ones: theses are places you must go to (if it's not been done yet) before making any decision (I'll let you do your research) :

    - Carl Marletti, 51 rue Censier 75005 Paris, http://www.carlmarletti.com/accueil?l=en
    The éclairs are crunchy (and the rest is very good too...)
    - Jean-Paul Hévin (the rue Vavin store is my favourite place,) https://www.jeanpaulhevin.com/en/
    He makes the best ganaches !
    and last but not least:
    - Du pain et des idées, 34 Rue Yves Toudic, 75010 Paris, http://dupainetdesidees.com/index.php
    Trust me on this one , he makes the best croissants in Paris, and you want to try his pain des amis!

    One of the many things you don't know about me ? Now, when I tell myself "Mind over matter", I think of you. Everytime.

    Have the greatest sunday :)






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  66. i think is really good you're putting this all out. It sucks you have ALS, but you are amazing in your blogs and and I'm sure in real life. Plus you get to live in paris and I'm jealous.
    I have an incurable cancer and am doing well, ok, on drugs. but I have decided when the time comes the quality of life is over , I will follow the Dignity in Death and take an overdose of pills. I'm sure you've heard of the brave young woman in Oregon who chose to end her life knowing it was only going to get worst.
    Most people, including most people who commented here, really don't know what it is to live day in and day out with an incurable disease. some days are good and some days its fucking lousy. I'd like more days too but you do what you do and try and live it as best you can.
    BTW, on my bucket list is a trip to Paris, if I could get over the flight:) which I'm sure I could.
    keep fighting and sounds like you are doing great.

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    1. Christina, you are right, we have no idea what it is like to live with an incurable disease. I send you my love and wishes for fewer bad days. I hope that you make it to Paris I used to be terrified of flying until I started taking a Xanax 45 minutes before the flight, it works very well and I am now able to do things that I could not do for years,
      Sending you a hug and lots of light
      Lourdes

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    2. Christina, you are so right! I've been a volunteer with Chemo Angels since I retired in 2003. I've had several friends with this horrid disease. I just want to encourage you to go to Paris!! I spent 30 years with a major airline and it's something you should take advantage of. Have your Dr give you meds. Do as my daughter does before a flight ~ have some "airport medicine". (Bar) :) I promise you, the pilots and flight crews don't want to have any issues and have everyone's safety in mind.

      Do it!

      xo
      Pat

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  67. Morphine drip for me, needles and all, if I could not verbalise when the time is right then I would have forewarned my family and friends that I will give them a look to emphasize the time. Holy shit we all need to take control of the inevitable. xxx

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  68. "You used to be much more....muchier. You've lost your muchness." Alice in Wonderland I would hang on to my "muchness" as much as possible. Quit my job, travel, spend time with my loved ones, get all my financial affairs in order. I would reread Even Alexander's book, Proof of Heaven and pray a lot. You my Dear live with your life with "muchness". Your journey is our journey and we share it with you and love you you for it.

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  69. Dear Ellie, I adore your blog and have reading it for, well -- I could tell you the exact date I began reading it because that day, my life was altered. But first, I don't know whether to love or hate the doctor for offering you a place in Paris to end your life. Shit yes, a dose of reality! I'm ambivalent about this subject, as I'm guessing you may be -- which may/may not be why you asked your readers the questions you've asked.

    I began thinking about your questions the day I first read your blog, because of the stories about your life that you openly share. They sit with me. I ponder what I would do if I were you. I think about your family. And my grandmother had ALS in the 80's and we were suddenly educated about ALS but it was too late before we could process it. My Aunt now has ALS too....

    So I have been altering my life and living my life differently since the day I first found your blog, so that in case I get ALS (or anything else that can't possibly be as awful as ALS), I am somewhat prepared, whatever that means. Major changes and some subtle in lifestyle, attitude, focus, relationships, homes, etc. Don't believe me? Well silly as it sounds, I send you little mental 'thank you' waves from my world every single day.

    I'm glad the doctor told you that you looked great and have years ahead -- not surprising when you're such an inspiration.

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  70. Ellie, you are such a special person, so uniquely wonderful! I have thought about this excellent question off & on all weekend. I don't fear death itself because I am confident in my hope in eternal life with God, but I am human, nevertheless, and if pain associated with death is anything comparable to natural childbirth, I want to avoid pain if at all possible! (I love the ideas others mentioned above about peaceful settings surrounded by loved ones and some mind-numbing drugs ... I'd add a string quartet and a perfectly aged bottle of reserve wine to that list)! However, because of my faith (I think the word religion carries such negative connotations nowadays), I believe I would want to be medicated for pain and have a DNR in place, but I wouldn't opt for the death with dignity option. The goal of Christianity is to be in such a close relationship with God that one is able to glorify Him in every act, even in moments where we are shamed or undignified-looking. It is an every day struggle for me to give up control (or the illusion of control) and trust God, but as He gently teaches me to trust Him in the small things, I find He is also trustworthy in the big things. I would definitely be praying for His power to be made perfect in my weakness.
    I don't think it's right to judge someone who chooses assisted suicide; my place is to offer compassion and mercy. But since you asked for others' opinions, I just wanted to share my hope. Keep searching & fighting ... your tenacity is palpable and your joie de vivre is contagious!
    RR

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  71. I just found your blog this morning and I'm hooked! You are a delight and I love your writing and the fact that you keep it real! My mother suffered from strokes and dementia for a number of years with no quality of life. I railed at God to please take her so she wouldn't suffer anymore. Of course, He has his own timing. I've had 2 friends experience ALS. Alzheimer's is another horrid disease that I hate. Bottom line....what would I do? I'd have a huge party ~ tons of flowers, balloons, great music, food and all the champagne anyone could drink. I'd want to share my thoughts and feelings with my family, loved ones and friends. I'd hope I could eat ice cream until I couldn't and then have the heavy drugs! We are kinder to animals in this country than we are to humans. As difficult as it is to make the decision, we don't allow our pets to suffer. Dying with dignity should be anyone's choice.

    Thank you for sharing your beautiful self, your lively spirit and your grace under fire.
    xo
    Pat

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  72. This isn't exactly my thoughts on how I would deal with ALS, but are you familiar with Bert Woodard? I just saw a facebook post about him. He lived with ALS for over 25 years and wrote a book (typed with his feet) called "Living with It, Not Dying of It."

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  73. So glad you asked! I'd do exactly what you are contemplating. I'd add some champagne, if at all possible. My husband and my Siamese cats...a yes. Having trouble deciding on the music. I'd probably go with some Marvin Gaye. Maybe Aretha. I need to consider the music a bit more. I'm sure about the champagne, the husband and the cats. Wait, I'm probably going to add some boots and a scarf. Because I wouldn't be caught dead without these items.
    When my brother was in hospice at home, he wanted to watch every episode of "American Rag Pickers", and even though he couldn't eat, he woke up at one point and asked for a fried pork chop which I raced off to procure. He sniffed it when I brought it back to his house, and had a bite. He seemed overjoyed although I'm sure that's just the way I chose to frame the situation.
    I hope you don't have to decide these things for awhile but I am so glad that you are lining everything up. And, I'm very glad you raised this question. It's an important one. And, I'm also very happy that you are continuing to find treasures for us! My portrait of a French Man, and my coin box arrived, wrapped to survive Armageddon. It took me 2 days to open that box. The portrait will be a Christmas gift for a friend. As for the coin box, I thought it was going to be a gift for a friend but instead it is a gift for me.
    Sending love from Pittsburgh!

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  74. I don't want a party..I don't want flowers,I don't want fanfare.
    And I would chose Dying With Dignity.
    You're an amazing woman..bravo for speaking so honestly..it's extremely generous of you.

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  75. Omg I had to laugh when the doc said you have to go a week early so they can get to know you..say what?? Im with you, that would never happen...lets see, what would I do? Well i just had surgery for thyroid cancer & I had to dig deep & I guess thats what I would do with ALS & I would probably bow out gracefully or as gracefully as I could...now having said that I hope you're around for a long time because your blog brings me hope &; faith with a dash of kind of fucked up humor...love you dear Ellie...always..J

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