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Q&A, S'il Vous Plait?

Well hello from Provence!

As promised, I have spent the last few weeks finishing my book. I am almost finished but I wanted to ask all of you a favor. As most of you know, the book that I am writing is about the last six years of my life detailing a fun little journey I am having with ALS. I have learned a lot these past six years and I thought I would pass along anything that has been helpful for me regarding ALS and life in general. When you get a diagnosis of ALS, life pretty much smacks you right in the face… And you learn a lot. It would be selfish of me not to pass along the lessons that I have learned. I thought that it would be useful/helpful/insightful if I wrote a chapter answering all of your questions. Feel free to ask me anything… I am an open book and I hope that my trials and tribulations may help some of you with yours. Leave your questions in the comments … All of the questions will be anonymous and I will not use your name in the book, unless you want me to, so feel free to be open/direct/vulnerable with your questions. Thank you so much!

*So, how is life in Provence, you ask? To tell you the truth I find myself saying a lot, “I miss United States.” And is it weird/awful that I want Ivanka Trump to be First Lady? Now don’t get me wrong, I don’t hate France… Entirely… Just partially. I will say with absolute certainty that I hate the French postal system. They’re stupid. Don’t even argue with me, they are. If I hear one more person say, “That’s just the way it is in Provence”, I am going to puke. I just have never appreciated that defeatist attitude. If something is not working, I tend to think, “Well, fucking fix it!” And I absolutely deplore the fact that everything is closed on Sundays in France. If I want to spend time with my family, I will, but don’t force me! When I remember how I read ‘A Year in Provence’ and I thought that all of the Provençal quirks were charming, I now think to myself that it’s actually just annoying. Just for fun, I thought I would point out reasons why not to live in Provence… Or France for that matter.

             There is no such thing as customer service in Provence. If you want to return something… Good fucking luck.

             Since there are exactly 0.05 restaurants open on Sundays in Provence, you are forced to go to fast food restaurants that you would never step foot in in America like Kentucky Fried Chicken. But then, you are extra duped when you learn that there are no biscuits, no mashed potatoes and gravy and no coleslaw… So really, what’s the point? Your second option on a Sunday is McDonald’s but be careful… The sodas are flat, the fries suck and there are no hashbrowns. I mean, c’mon, in the land of potatoes here in France and no hashbrowns! You could cook at home on a Sunday but plan ahead because all the grocery stores are closed.

             The goat cheese here tastes too much like goat cheese, if you catch my drift.

             My house does not physically have a number address so I get mail about 20% of the time.

             When the mistral winds kick in, my Internet immediately goes out. Additionally, the wind knocks out the electricity to my front gate so when my nurses come to the house every day, they cannot get in the gate which means I don’t get to have a bath. True story.

             The town that I live in is basically 90% Arab. I have no qualms with Arabs but when they decide to capitalize on the fact that every Westerner is afraid of them because they think that we think that they belong to ISIS and should be feared, I get annoyed. Just because you have a long beard and a copy of the Koran tucked in your back pocket doesn’t mean I’m going to pay you €150 for two hours of garden work.

             Even though I grew up in America, land of the Second Amendment, I have heard more gunshots in the past week in Provence than I have in my entire life in the US.

             Why is everything so fucking small here? Drinks, cars, hair, boobs.

             There are no Costco’s and no Costco’s hot dogs… Not that I would ever eat one but I want the opportunity to deny myself of one.

             Dog shows in Provence suck. 200 puppies and not one of them I wanted. Who wants to go to a politically correct dog show and only see “farm dogs.” I want something fluffy, overpriced and born to a morally corrupt breeder.

             It is sad and pathetic that my favorite place to shop in Provence is the pharmacy.

Okay, I will shut my pie hole now about why I hate Provence then tell you what I do like about Provence but beware… The list is short and getting shorter.

             The farmers markets and flea markets are fantastic.

             The antiques are sublime and unpretentious.

             The weather is wonderful, not Santa Barbara wonderful, but wonderful.

             The charm of the old houses is undeniable.

             I like that my closest neighbors are sheep.

             I can probably kill someone and bury them on my property and no one would ever know.

             My newly hired angelic nighttime caregiver is Muslim (not that there’s anything wrong with that) and wears a pink prayer gown to pray and he has suggested on numerous occasions that I should read the Koran “to relax.” That humors me to no end.                                                                                       
             There is actually space to breathe here.

             The quality of life in Provence is remarkable… If you like that sort of thing.

Okay, that’s it for today… I will get back to finishing the book and by the way, I am on Season 2 of Downton Abbey!






  1. There was never any ice at the drive through McDonald's in Wales when I lived there. How am I supposed to drink coke without a ton of ice!!! Also, only one Starbucks. It was torture. Luckily, they've remedied the Starbucks situation.

  2. Ellie, I want to say please come back to Santa Barbara, but I feel your health care is best in France.
    You are an exceptional lady who I look up to in genuine awe. XO, Cessna
    Hillary for POTUS all the way!

    1. No, not Stumpy.
      Anyone But Stumpy.

    2. Dear Anonymous (at 9:05 am), Please, before giving such wholehearted support to Hillary Rotten Clinton, please read "Hell to Pay" by Barbara Olsen. Ms. Olsen was killed on 911 in the plane that hit the Pentagon right before she was to start her book tour. Consequently, this book did not get the publicity it deserves. Just read it. At least make a more informed decision about supporting such a person.

  3. Oh El, now I truly can't wait to visit!!!! I'm on Season 6 of Downton. Let me know if you become Muslim as I'll want to brush up on their holidays. That will be more celebrations! Love you!! FT SOON! xoxo

  4. Glad to hear your book is almost question would be can you move at all or does someone have to do everything for you? I think you're wonderful, lovely & beautiful...I was challenged last yr with thyroid cancer buy all god now and I wish the same for you..♡♡ sending much love...Jeannie

  5. Question for your book.....Do you every feel guilty or a burden to your family? Sounds very shallow as I type but I was diagnosed with MS 5 years ago and through my own relapses have definitely lost some of my confidence with respects to relationships and what I can offer.

  6. I just love you! I dont have any questions because you've already given me the answers. Thank you for this! I am waiting for your book!

    1. I hear your pain. I love France and spend several months a year there. My French friends of 20 years are family now but it is still a mystery to me when my American sensibility asks "but why??" and their response is "c'est comme ca" or they give me the French shrug, or sometimes they just act like they didn't hear me. We Americans are so different and always will be. We are not afraid to question what is going on or demand changes, gosh darn it. I feel bad for my French friends who just don't have it in their history/ability to do so but that is just the way it is and why I am right because I feel differently? Since following your blog I always felt that you were so much more the city girl in France. Perhaps a happy medium between the country and city is best. Just wait until those lovely warm days by the pool though! Glad your book is coming along and that you are back at your blog. Love, Susan NYC

  7. I'm so happy that you are back! No doubt, I could come up with some questions, for your "best seller'.
    Not feeling �� "Up, Up With People"�� these days, and don't want to come off as a downer.
    Hopefully, I will be back with a coherent question! Now, to find the strength to think :)
    PS...wishing you were in love with Provence. Is it possible to come "home" for a visit?

  8. You mentioned in one of your blogs what you thought caused your ALS. I would like to hear more about that.

  9. Ellie would you and David return to USA if Gracie would?

  10. Ellie, you are truly amazing! I suppose there aren't many perfect places to live in the world.
    Here is the States, customer service is a priority for most businesses for sure though!
    I look forward to your book release, a huge accomplishment!

    The Arts by Karena

  11. How thrilling to find a post from you when I wasn't expecting it. You have no idea how much I love your work - beautiful, sad, pithy, clever, informative, or entertaining but always interesting. Do you have any idea how many girlfriends you have? Of course, we can't all be Diandra or Yolanda - but we all love you very much and find your blog to be profound. I await your book!

  12. Ellie, I love the way you write! I don't have any questions either, I can't really articulate why. I wanted to let you know I sent you a P.M. on Facebook. To this page, not a personal page. It may be in your "other" folder. You may already know about what I wrote in the P.M., but it's so important that I want to make sure that you at least know my message was there. x Valorie

  13. Dearest Ellie- Here are my observations about life, take them for what they are worth...
    1. The postal system. Well, at times it is pretty @#$%ed here in the US. I have been using the USPS service called Regional Rate Boxes (little publicized because it is so inexpensive)to ship my candle products. About a month ago, the link on the USPS website was "broken" and they still don't have it fixed! OMG! Any private company, like Amazon would have it fixed in 2 hours or less!
    2. Power outages. If you live somewhere where that happens often, time to get a generator to at least power your gate or perhaps get a solar powered battery for the gate. We have frequent power outages where we live. It is a nice, upscale place where people are always adding onto their houses, barns, swimming pools, etc. The power company sends us a "Planned Outage" notice but they rarely happen when "planned". Silly me, I used to plan business out of our office on a Power Outage Day but found it frustrating to learn the outage was moved to another day later in the week.
    3. Fast food - well, you are just going to have to learn to make it yourself (or have your caregiver cook it). There is nothing magical about MacDonald's "secret sauce" - it is the same as 1000 Island Dressing. You can make BETTER burgers because you can get your beef ground fresh and don't have to worry about the "pink slime" here in America. AND, due to political correctness, MacDonald's fries are no longer cooked in beef fat. That is what made them soo wonderful. If you get your own deep fryer, you can cook them in beef fat and they will be BETTER than MacDonald's.
    4. Dog shows - even in the US that is NOT the place to buy a dog. Look, yes, to see what you might want but get Bunny or Gracie to pick up your small, fluffy dog in Paris.
    5. Flat Sodas? Get yourself one of those home soda machines. They inject CO2 into mix et voila!
    6. Goat cheese tastes too goaty? The actual name for that is "Bucky". It comes from female goats who have been exposed to a male goat (Buck) when they are producing milk. Don't know the French word for "Bucky" but the French certainly know what it is. No doubt one of your readers will know the word. Then, tell your cheese monger that you want goat cheese sans "Bucky". Alternatively, get Bunny or Gracie to bring good Goat cheese from Paris.

    Personally, I like the adventure of the "work arounds" one must develop when not in the U.S. For me, that is part of the adventure of life. However, I do not have ALS and no doubt that makes A LOT of things more annoying and difficult for you.

    Wish I was your Fairy God Mother and could wave a magic wand to make it all better.

    A book for you to read to put things in perspective, "Sixty Million Frenchmen Can't Be Wrong or why we love France but not the French". Authors, Jean-Benoît Nadeau and Julie Barlow.

    Smiles and Hugs from Charlotte Des Fleurs

    1. By the way, in America the "government" says they will fix it, but it takes forever and half the time still does NOT get fixed. At least in France they are honest. It has always been "that" way and they are NOT going to fix it.

      C'est la difference!


    2. BEEF FAT!THAT WAS THE SECRET and they are not doing it anymore!!!!!!HORRORS...........I LOVED THOSE FRIES!

    3. Hello Elizabeth- Beef Fat sounds awful, I know, but that was the secret. Can't think of anything else that Beef Fat would be good for but maybe someone out there knows. Perhaps you could roll it on a stick coated with bird seeds for the birds in winter? Oops! Just looked it up in Wikipedia - a common ingredient in British cooking - Christmas pudding, Spotted Dick and Mincemeat pie. Interesting. Do the French or Italians use it in cooking?

      Smiles from Charlotte

  14. What would you do if you had one day of being well again? What do us healthy people take for granted on an average day?

  15. Don,t you miss your family in the USA? Or are they coming regularly to you?

  16. I have a question. My Mum had ALS. She was diagnosed when she was 85 and died a year later. She didn't want a feeding tube so basically starved. I supported her wish but so many others didn't. I read your blog with admiration and respect and I'm wondering what your thoughts are regarding my Mums decision.

  17. Are you worried about the life stages your daughter has yet to hit and whether you are able to give her enough of 'you' to help her if/when there is a time that you can't be there for her? And this is a crazy (strange) question... is there any piece of you that thinks you'll be able to reach out to her from the other side? Have a sign or symbol that you share to let her know you're there?

  18. I totally get you re the goat cheese, when I was in Provence I loved it at first, then it was just too goat-ish, pretty quickly.
    Thanks for telling it as it is, and good luck with your book I cannot wait to read it! XO

  19. It would be very weird for Ivanka Trump to be first lady as the Donald would have to divorce his wife and then marry his daughter which is illegal. So, yes, very weird.
    But she does seem like a cool person.

  20. I too love love love Provence and always thought I wanted to live there. Last year I was fortunate enough to spend one month in a rental near Vaison La Romaine but as with you was very disappointed to see that the country is becoming more middle eastern than french. All the small town markets, including ours, were predominately Arabic. Most of the stalls were selling Arabic goods (including hiqabs and bling bling kids dresses - ugh) I am not racist but when I visit a country I visit it for its' culture. I have been to France 12x in the past 20 years and it has gotten progressively less French... no longer my most favourite place on earth. I've also been to the middle east and that is where I like to enjoy the Muslim or middle eastern cultures. So sad...

    Re your book I can't imagine being diagnosed with ALS, putting on a happy face and carrying on. I would be bitter, bitter, bitter. I'm certain the progress of this horrible disease has been documented in your book. I'm assuming the writing process has been helpful by documenting these feelings. My question is how are the medical services you receive in France versus what you would have in the U.S.? Is it advantageous living in France with respect to caregivers vs the U.S.

    Looking forward to the publication of your book.

  21. Melania Trump...First lady?...uggghhh..Especially after the fabulous, always smiling, brilliant FL now...Hooray for Michelle!
    Question: I love where I live. It's not much, but I'm lucky and get a smile on my face very time I come home. I don't ever want to leave. I don't need any more than this. Do you feel that way about your home and is it what helps you to make it thru each day... Or, considering your illness, does that even matter anymore? Do you live where you live, in the moment, surrounded by family and friends...and the"where" doesn't matter all that much?

  22. I am an Aussie who visits the US frequently, I agree the service in the US is exceptional.
    I love your blog, have never commented before, however my question is how can you stay so
    positive and give all your blog followers so many smiles from your blog posts? Can't wait for
    your book to become available.

  23. I have a question - how old of a disease is this? when I think of Lou Gehrig I think of a very long time ago; has anything new been found lately as to what causes it? Every blip on Facebook showed the Ice Bucket Challenge they had to have raised a shitload of money for research---it is hard to believe in the world we live in that there are diseases without cures out there ---love your writing style and your sense of humor through it all :) Best, Sandy

  24. holy shit!! as always cracking up laughing...but a little worried too...I thought Provence was going to be such a you! Candy

  25. Ellie, Did you read about the new copper atsm trial? I am hopeful.

  26. Oh, and I have been pouting because there wouldn't be any new posts from you. And Hallelujah there is! Woot. I don't have ALS but have been fucked up with the C word.. Sux,sistah.

  27. I GET IT!I HEAR YA!!!!!!!!
    I will have to think about a question as there is nothing on the tip of my tongue..........
    You pretty well covered what its like in all your blog posts as I HAVE READ EACH AND EVERYONE!
    Why are you going to dog shows........GO back to the POUND!!!!PLEASE!

  28. Are you contemplating returning to Paris? What happens if you have a medical emergency in Provence? Sometimes I am afraid for you there although I remember that you were no fan of your ER options in Paris.
    For the book:1. I too am curious about your range of movement. 2. You have a feeding tube yet you rhapsodize about food. Sorry to be so clueless but are you going to explain how you eat...and stay a "fatty"? 3. Anything in the book about sex? I'm sure your other readers will have better existential questions to pose to you...and I look forward to reading your book. Stay safe Ellie and please find a nice roasted chicken for Sunday lunch. xo Kiawah Cindy

    1. Thank you Cindy. My questions exactly. Do you eat the same food as everyone else except that it is prepared in a way you can get it through your feeding tube? Also your range of movement. I think you are entitled to any grumble big or small about ANYTHING. I often think of you when I start to grumble!!! And stop it immediately. Be as well as you can be!

  29. Thank you for being so vulnerable. I am curious about your relationship with your family. You have referenced that some of them have not been there for you, and as I've had an estrangement with a sibling myself, I'm curious how you are able to handle it.

  30. Hi Ellie, glad to see your post. My question is more around intimacy and maintaining that contact which sometimes can be more important than just the sexual act! I think it would be hard to maintain intimacy especially when you have so many carers. I would be interested also to hear how you have been able to deal with your loss of privacy.

  31. Well, I've read all of your blog posts, too, and you have already answered a lot of the above questions in some of them. I know you are afraid, because you've told us you are. So my question is what do you think gives you the strength to face that fear every day? It and your physical struggles are obviously exhausting and I am genuinely in awe as to how you manage that emotional side while still making us laugh.
    I know the feeling of annoyance at the French problems you describe but then I lived in the west of Ireland for 11 years before here and you would (maybe) be surprised at the many unfortunate similarities between the back end of nowhere there and France Profonde. We arrived there in 2001 and it changed a LOT (got better) while we were there but I never got used to it and always missed the conveniences of the US. Whenever I go 'home' to Boston these days I am more aware than ever of the way many of our fellow Americans take convenience for granted, as I used to. I'm grateful for the opportunity of having to learn to operate differently, with the French, whose culture is profoundly different from ours, and whose language I am coming to grips with,( very slowly). But what you've done is far more remarkable because of stupid, hateful ALS. As good as your explanations are I still can't appreciate or fully understand how you manage it all and I imagine it will be a great lesson for me to read your book.
    I hope the sun is shining for you today and the mistral has subsided and you are going to be okay with Provence.

  32. Dear Ellie,
    You’re back, such a happy day for a start. I took of my rose tinted glasses about Provence and try to see it through your eyes for all the reasons ‘why’ there should be another side of the brochure. France always had too many foreigners and Arabs were part of the package even some 37 odd years ago. But I guess Paris had seen it all and Provence is the new kid on the block. I travelled so much and during my last stay in London I hated many things; in preference of dislikes I will start with the weather, expensive trains with rarely available seats, clueless people, expensive food and I can go on and on. Then I returned back to South Africa and I find that my list here is even longer about the shortcomings in my own country. Then you turned up by coincidence and I love your guts and your ability to make things change for you. I now will say it’s just ‘too hot’ but not complain too bitterly about the heat. When I received my share of a scary disease, I thought ok, it’s bad, but not too bad yet. Smoothies, vitamins organics are now part of my new life (thanks to you). I live on a small farm and work in the city which is balance between the two worlds of rural and MacDonald’s. Took me some time to get into farm life and always to be prepared to have sufficient stock in the cupboard for the entire weekend otherwise it means another trip down country lane. When too much became too much and I asked myself one day, why do you want to do city over the weekend if you can watch all the horses running in the paddocks and see the joy of my farm grown puppy exploring the mountains? So, I find the hard way my escape road from reality, my happy place.
    Now Ellie, that brings me to my question. Your happy place in this craziness of being ill for so long, where is that place?
    Love and lots of sunshine from South Africa

  33. Hi Ellie, your blog is my favorite. If I see a new post from you on Facebook, I hide my phone under the conference table and read your blog during meetings! Rude, right? So what! My question: why did you choose to share your illness journey with us? Why would you open yourself up to the judgements of strangers? I'm glad you write about your life and your disease. And Paris and Provence and Real Housewives! Sending love from Pittsburgh.

  34. Okay -- what ever happened to "Stephen Andrew?" (Not sure I've spelled his name correctly.) I miss his comments and humorous injections! Ellie, Ivanka Trump is gorgeous, talented and smart!! But she's The Donald's daughter. His wife, Melania, is also drop-dead gorgeous. She'd be a stunning first lady!
    All I keep thinking lately, is that you'd be happier back in Santa Barbara -- or anywhere in the USA. Would that be a possibility? You wouldn't have the challenges of so many cultural barriers....maybe life would be calmer for you? Also, tons of dogs to choose from!
    XX - Justine

    1. STEPHEN has been MISSING IN ACTION ever since I sent him a CHRISTMAS Present for HIMSELF and BARBIE!
      MAYBE it's MY FAULT!
      I MISS HIM TOO!!!!!!

    2. I miss him too! There have been no new postings on his blog! He has been commenting on other blogs, so he hasn't dropped off the face of the earth!

    3. he is around still!! and going to email him now x

    4. I'm here, I'm here! I've just been pissy and keeping my vapid thoughts to myself.
      Elections test my patience as I have complicated political views.
      A question I've wondered, when was the first time you felt stronger after your diagnosis? I would imagine you've had thousands of moments where you've been struck in a surreal way with what you're facing and that you're able to face it.

  35. I would be interested in what a typical day is like for you. And you talk about food a lot - how are you able to eat? Did you ready the book by Susan Spencer-Wendel "Until I say Goodbye"? She had ALS and opted not to go with the feeding tube, etc. How are you able to write? What's it like to never have any privacy? I so admire you and can't wait for your book!

  36. Hallelujah - we have been living in Provence for just over five years now, on the south side of the Luberon and you have just encapsulated in the first set of dots every gripe I/we have about life in la belle France. To comment :

    I thought I was very clever when I bought all my Christmas gifts online the first year (no time, as we moved here in October, to do it in person). 75% of them didn't arrive. Ever. We found out later that the postman from our local distribution point was disillusioned with his job, so he would deliver a few letters/parcels each day, then take himself off to the local woodland, light a cigarette with wacky baccy, spend a few hours chilling, then set fire to the remainder of the post.

    Our internet also collapses when it's windy. Or rainy. Or if it gets too hot. Or if it just doesn't feel like working, after that second glass of rosé. And don't get me started on workmen returning after lunch........

    Hunters : after the French Revolution, the ' Droit de Chasse' was an important change for the local population of chasseurs, enabling them to pot some creature with which to feed their families. Fair enough. Now, the hills of the Luberon are alive to the sound of gunshots early in the morning, followed by the sound of a liquid breakfast being consumed, followed by the sound of more gunshots, as the guns are fired at anything that moves. It seems a dozen people killed by mistake and a couple of hundred wounded every year just isn't important. And they can hunt every day. Take a walk with the dog at your own risk, wearing something fluorescent and singing very loudly.

    Drive a 4x4 and you risk losing your wing mirrors and/or several coats of paint, if you try and park in any of the car parks we have encountered.

    Dogs (see hunters, above) : your Teddy looks gorgeous, happy, and well fed. Spare a thought for the hunters' dogs, kept in captivity all summer long, ill-fed, ill-housed, in full sun with little to drink, then taken out in a pick up truck with a cage in the back, thrown around, often abandoned because lunch is more important than finding them, and often left with wounds or conditions untreated. Our dog was abandoned and left to starve in the forest behind our house, and survived on her own for three weeks, without food but drinking from our little bassin. When we managed to catch her and take her to the vet, she still had her baby teeth, so was about 6/7 months.

    So, I hear you wonder - why are we still here. Because, although these gripes are very real and important, the rest our life here is wonderful. Full of beauty, kindness, camaraderie, and so, so different from life in London.

    1. I have been living in the Haut Languedoc for 7 years, and have not had such problems with hunters and their dogs. The Chasse is very well regulated, you may only hunt sanglier on Wednesday, Saturday and Sunday, and there are many protocols involved. They guard the roads, and require hunters to be members of the Chasse. I am acquainted with a couple of hunters and they truly love their dogs and spend a lot of time abd money feeding them and keeping them healthy. The dog you found may have gotten lost, that happens, and if they don't have a collar with their name, its hard to rehome them. My experience with the Poste has also been quite good, much faster than the US postal service, and my local "factrice" knows everyone and you will get your mail even if it is addressed incorrectly. The internet does go out sometimes, but really, are we that dependent on it? In 1985 we got along without it at all, I can live with a little bit of down time. Its true that there are very irritating things about living in the French countryside, I frequently complain that its a third world country. But I am never tempted to return to sunny San Diego.

  37. Although I am a very careful label reader, I adore my Costco hotdog (remember it is Kosher) fix about once a month. Jones and I share it and he even knows where the exit from the the 5 Freeway to the closest Costco is located and cries if we do not exit appropriately. No restaurants open on Sunday---that is the worst. Sending love and blessings for the new book. xoxo Mary

  38. I, too, have been confused about the feeding tube vs.the food posts.ive been hoping that you are eating at all the wonderful restaurants you tell us about. The older I get the more I value and LOVE the U.S.and the more protective i feel about those that would try to sabotage it. I totally believe you and yolanda could master santa barbara and aspen once again:consider it research for a new book.there are endless titles, the photos would be a pop culture smorgasbord and the housewives could make an appearance. You have a major following, get ready for your book tour, gurl!

  39. Dear, Dear Ellie, as everyone else has expressed, it made my day today to have your post waiting for me. You are a true inspiration and I love your saltiness!!
    Question for the book: you accomplish so much, I know you have caregivers helping, but what are you able to do yourself? Like writing? How do you accomplish that physically?
    I really appreciate your frank take on the reality of Provence/France. Helps make "home" feel just fine, thank you!
    I, too, along with your faithful followers can't wait for the book.
    Take good care and find some relaxation with "The Pink". Barbara

  40. Hi Ellie,
    What is your writing process like? Did you write before you got ALS? How has that changed your writing, if at all?

    Do you see people differently now? What qualities do you think make a good person?

    Thanks for the chance to ask some questions. Best of luck on the final section of your book.

  41. Hi Ellie: some questions I had were asked by others already. For those of us who have not traveled as you have and had the good fortune to visit Paris, can you tell me why you moved to Provence. I understand you like the country, and I don't blame you, but is it that Paris is so romanticized and we Americans who haven't visited are making it into something that it isn't...something only those who have lived there really know about? You have a gift to be able to tell it like it is, and I like that about you. No sugar-coating, cutesy stuff. I wish I could take your ALS away, but I want to thank you for sharing your feelings. And I twirled for you on Christmas Eve. Sending love to you, Ellie.

  42. I would like to know about sex /intimacy. Your hubby is cute. Do you have an "arrangement" since he spends part of the week in Paris for work? (I think you mentioned that.)The privacy issue about bathroom functions. Do you still get your period? I would die of embarrasment but understand that is the least of your problems. You love food do you eat solids or just the feeding tube? And now for my most shallow question - do you do any skin care products or makeup for your face? You still look beautiful. Sorry for my rude invasive questions! Go to the pound for a wonderful dog. That's where I got mine. Love you!!!

    1. Whoa with your question. What happened to "in sickness and health till death do us part?"

    2. sex and intimacy are part of life. we do have to talk about it and deal with it.

    3. Yes, it's a valid question. Every relationship is different. Ellie doesn't have to answer it if she doesn't want to.

    4. Yes sex and intimacy are definitely part of life and Ellie has been asked that general question. Asking Ellie if she gives her husband permission to have a relationship with other woman is totally inappropriate.

  43. Ellie - so anxious to read your book. I can't tell for sure based on the description that you gave, but I was hoping that you would also talk a bit about your childhood and growing up. I know you have already touched on some of that on the blog, but I love reading biographies and auto-biographies, and your family sounds a lot like mine. But, I understand that that is not the focus of the book. I would like to know how, as some have mentioned, ALS has affected your family relationships. Have they been supportive? Unsupportive? Choosen to ignore it like nothing is wrong? Abandoned you completely? I was diagnosed with relapsing-remitting MS ten years ago in mid-life. I am very fortunate that I have very little physical disability to this point, although the fatigue and brain-fog can sometimes be overwhelming. Maybe this will change at some point, when I have no other choice, but even though I have a loving, supportive family, I keep most of my problems and thoughts to myself to spare them the worry. I guess that may be fairly typical of most wives and mothers? I don't want this to be a burden for anyone else, at least not too soon. Thank you for sharing your life with the world. Your thoughts and insights and descriptions are truly priceless.

  44. I warned you that you were moving here in the off-season. Just wait until spring, summer and autumn.

    And as for the rest?
    --You know you can’t take anything back anywhere in France, not only in Provence.
    --There are tons of restaurants open on Sundays, that is why Sunday Lunch is such a « thing » in France. You just have to Google « restaurants ouverte le dimanche à (fill in the blank of the town) » . I have only eaten at a fast food joint once during ten years of living in Provence, out of curiousity (KFC). Well, that took care of that. And yes, most big grocery stores are open Sunday morning.
    --Goat cheese is from here, you dufus, this is what it is supposed to taste like. But just get « frais » nothing aged. There are a million kinds of goat cheese, just stick to the simple stuff.
    --Your « facteur » should know you and your name by now but you can always get a post office box instead.
    --Yes, the Mistral slows the internet – you can always get a satellite for that like a lot of people do in the country and ask the owner to put in a generator as it is NOT normal that your electricity is going out. Plus, your nurses can be let in the side gate, non ?
    --I doubt that folks are trying to fear-monger you but are probably just taking advantage of you because they think you are rich. I can help you find a gardener.
    --Hunting season ends Feb. 29th. I hate it as much as you do, my dogs even more.
    --Do you remember when David drove his car into the tiny lane in front of our house ? That is why cars are so small here, to fit the roads. I can’t speak for the rest…
    --Can’t help you with Costco…*cough*
    --I am SO glad that others have called you out on the puppy show. Ben’s breeder currently has Golden puppies and she also breeds Teckels too.
    --Girl, I really need to take you shopping because why do you think there are so many « Shopping in Provence » tours ? There is fabulous shopping here. Just hint what you are looking for and I will help you in the right direction…

    As to «that is how it is done in Provence» - yep, that one drove me crazy too but I get it now. People have been living in these parts for 3000 years. They have their own speed and that is a part of why the quality of life is so fabulous.

    Oh, and I responded to Jojo's comment about their being "too many Arabs" in Provence on my blog.

  45. Hi Ellie, I can't wait for your book! It's so brave (and so YOU) to ask us to ask you anything!! I have so many questions and yet no questions; just happy to hear what you have to say. I guess I would like to know more about your daily ''routines'' and the details of making it all work. I know you've blogged some about that before. I guess it's because I'd like to see myself as a friend and just be there by your side at times (like Teddy!:) In fact I wish there was a documentary about you and your life, you're so inspirational, heartwarming and bad-ass funny! And one more thing...thank you for allowing us to be very ''uncool'' and voyeuristic for a few moments. I know your book will be one I never want to put down. Much Love, B. xxoo

  46. I read each and every one of your blogs, word for word and I asked you my burning question about a year ago (about how you write being paralyzed from the neck down) and thank goodness because it was before you had a huge fan club and you replied immediately via Email. You fascinate me - incl. what you're able to accomplish with ALS, knowing what many, including moi, can't accomplish. Please please don't eat fast food. It's factory farmed crap. Please adopt another shelter dog. Please don't leave Provence -- spring will make up for the winter misery. As for Sunday closures - I relate 100%. Germany, I think, is worse (and perhaps to blame, but not sure) It took me 4.5 years to get over the Sunday shut-down. I loathed every Sunday for nearly 5 years of my life. Like a cold sore on a lip. I think it's a constitutional law that forbids commerce on Sunday, other than allowing a few biergartens and restaurants to serve (German) food, except for the annual "Sunday shopping" day when it seems everyone and their big car hit the stores and gobble up what they missed out on the other 51 Sundays. After 5 years, I like the Sunday peace with nothing to do but 'wander' in the woods, but I've moved to Liguria and Sundays are alive there, along with Cinghiale hunting season -- gun shots 24 hrs/day. Let's go to Santa Barbara! Please hang in there, Ellie -- you're in one of the loveliest parts of the world.

  47. Looking back at ALS, what were the earliest symptoms and how long did you have them prior to being diagnosed? Enough of questions, I just want you to know that you are an amazing Woman, courageous, loving, quick wit and a great sense of humor, loyal friend and a lover of life. I commend you on your outlook on life, your not letting this disease keep you from experiencing a life full of enjoyment and adventure. I always look forward to your next post. Someday I would love to travel and visit the beautiful countryside that you write about in your blot. I look forward your book to be published. Thank you for sharing your life with all of us. Love to you! J

    1. Yes, I was thinking sort of this same thing as in did you have any little signs or symptons much earlier that came back to your mind and made sense after your diagnosis?
      Sheila in Port Townsend

  48. Hi Ellie,

    In different times of my life (40 years long), I have been a fervent Christian and a fervent aethiest. This past year has been the hardest of my life and I find myself straddling different faith fences and would really love to believe in God. Yet, I have doubts. I can't imagine this much pain without thinking it must have a purpose. In a post awhile ago, you wrote about your friend who passed away from ALS and how your faith in God gave you solace (even though she was a non-believer). Can you tell us the roots of your faith and whether your ALS has strengthened or weakened your faith? Consider yourself hugged, H

  49. Dear Ellie,

    I can't tell you how happy I am when I find your blog has arrived and I can read it, when it is still dark outside, with my first cup of coffee.
    I think most people would immediately respond to your homesickness with the answer that a geographical move will not bring you happiness. That you have to find happiness from within,. WELL!! Your case is entirely different. You have a right to feel unhappy and I say anything that will make you feel what you should, if you can, do.

    I too lived abroad and I discovered that missing "home" never entirely goes comes and goes. I thought about you today when I was at Costco and saw the Hot Dogs $1.59 sign. I said a little prayer...that maybe now you are feeling more at peace. I know every one of us would be happy to mail you one if it would help! HA!I also went to Walmart,yes Walmart, and saw a couple of people that made me think to myself. Wonder how Ellie would describe that person?

    I really don't have a question...except will you write again soon and let us know you are a bit better? We all care about you Ellie....Janey

  50. Ellie, what would you have done differently if you knew that you were going to get ALS when you did? This question, when I let myself think about it, leaves me wondering in a pointless and painful way.

  51. OK, so here is your most invasive, inappropriate, personal, rude question......but you asked for me to ask.....what is your spiritual state? Are you a believer in Heaven? Have you accepted Christ? There is NO right answer here....I was just wondering. Don't answer if you don't want to!!! I am so looking forward to your book and I absolutely love your blog and believe we could be BEST friends!!!Ha! Never heard that before, eh???

  52. When your ALS really pisses you off, do you break glass, plates, or just cuss like a you know what?

  53. Thank you for your blog, I just love it so I can't wait for your book!
    My questions:
    I imagine that when you were first diagnosed things got progressively worse but now I think you are somewhat "stable". Is that correct or is every month a little different than the last?
    Because none of us know when we will go, I think it is important to ask something like " if I were to die this year what would I regret ?". And then hopefully, we can do something or make a small plan to minimize regrets. Do you ask yourself something like that?
    And selfishly, do you have something in place so that someone or several people can update your blog if you no longer can? It makes me tear up just thinking about that….
    Again thank you so very much- Suz

  54. It's clear to me that you have retained your sense of humor, which I bet really helps a person survive a very difficult and frightening diagnosis. What approach do you feel has made coping with your illness -manageable- what advice would you give others who are newly diagnosed?

  55. I love reading your posts to my husband! Ha!

  56. I have no idea what ALS feels like. I do know what it's like to have life be unfair and suck majorly at times. How do you retain your outlook and humour? (You are hilarious.) I rely on bourbon and working on my novel where I get to murder off the characters who are eerily similar to people I don't like. I also shout at the sky a lot (I call it "spirituality.") Can't wait for your book. xo

  57. Hi Ellie,

    I have been reading your blog for a while now and look so forward to each post. You keep me in stitches! I've shed a few tears on several occasions too though. I know two specific people who I encounter on a regular basis who could definitely use more laughter in their lives. And they shall remain nameless. I really should turn them onto your blog. No...On second thought, they would most definitely evoke a Fat Fuck Part II and III out of you! One of my all time favorite post, by the way. Come to think of it, I'd love a Fat Fuck series but I suppose having the angst it requires to write one isn't good for the pyschie!

    Until now, commenting on a blog has never been my thing. I am so glad that you have asked for questions because I have one....or two. Of course, this comes as no surprise to the people who know me. Here goes. Do you worry that one day you may lose the ability to speak? If so, would you entertain the thought of using a speech generating device?

    I have more questions but will spare you. I just love your honesty and sense of humor but most of all your tenacity! Can't wait to get my hands on your book!!!

    Take care,

  58. !. I love your friends who comment here. They wouldn't even let me joke about chicken pot pie.
    2. I love, love your stories. You are a fine writer.
    3. I love the way you express your sorrow: it comes off as true and full of depth - stretching around, and up and out.
    4. I love the way you express your fears: an existential challenge; solid, immaculate, no fluff
    5. And I love the way you express your love: a well of the fullness of your heart.
    You traverse your losses with a sure-footedness that I admire; I would always pick you first to go in a foxhole with me, no matter the apparatus's needed nor the number of caregivers. I am interested in anything you decide to share; I am glad I happened upon this computerized dose of reality. Just keep sharing this gift for as long as you are willing. Thanks for all before and for all ahead.

  59. LOL. I could substitute Rome for just about all of these. Life abroad is as much a challenge sometimes as it is a pleasure. Here's to more pleasures than challenges!

  60. Do you regret moving to Provence? Have you heard of the Amazon Echo? you can give it commands, like play the news, play David Bowie, what is the weather. You can program it to voice control things like lights. It's great. My husband is into home automation and is excited by the possibilities. I am thinking of getting one for my mamma who is in a wheelchair and can;t reach the radio or lights etc.Love your blog. You are a fantastic writer and I look forward to your postings.


  62. Hi Ellie,
    When you think Costco - think Metro - there is one in Salon de Provence and another one in Les Pennes-Mirabeau. There are restaurants open in Fontveille on Sunday and so is Brasserie les Varietes, in St. Remy. (They are really nice and serve lunch until 3pm). I'll think of more for you. Once you go to your post office often enough and have a "relationship" they get much nicer. Efficient? maybe not. When hunting season is over the guns will stop. Guess why I spend most of the hunting season in California. The Mistral is a pain and I'm sorry to say that it never gets better. :(
    When you call Beatrice to ask about getting your nails done, talk to her about dog shows. She shows her dog and knows all about them. I'll email you her information.
    You will just have to make some trip to my side of the Alpilles.

  63. I love my Amazon Echo and Ellie - get one!!!

  64. Hi, Ellie. Having lived abroad not far from you for one year twice, I may understand a lot of your angst, as well as your joy, about living in France/Provence. My advice: let Heather help you deal with the Provençal challenges and...wait until Spring!!

    I do have one question about ALS, but I don't know if you know the answer: how has Steven Hawking lived so long (an adult lifetime, now) with ALS? That he has done that gives me enormous hope for you.

    Back to you, with every best wish, Leslie

  65. Your blog is my all time favorite. I will always open up your newest post first, even when I'm in the middle of a deadline. It's because you speak from a point of such honesty and humor. We've all learned something from you. You make me chuckle and cry in equal measure. Thank you!
    Can't wait to buy your book!

  66. Prayers for you
    Love your sense of humour! Your spirit is much admired. Lots of wonderful words as hearts break that none of us can lay hands on you for healing. I dream about it though. Hoping to hear news soon Teddy has a new home, and that you get to see him.