Where the fuck do I start? Just when I thought that I was edging towards a peaceful week, a storm arrived... A shit storm.
I wasn't going to share all of the gory details with you but as you know, I tell it like it is... Roses and thorns. So, here goes...
My health is at such a perilous state that I was forced to make some decisions... Ugly decisions. Just like a pregnant lady's birth plan, I have to have a "death plan." This is the tragic part of ALS. I have to get in front of the inevitable. I made a deal with myself from the first week that I was diagnosed with ALS... I committed myself to go the distance with bravery, honesty and tad bit of dignity. However, I also made a deal with myself that if this disease got to a point that I became a burden and lost my dignity then I would bow out. This is where we are at, my friends. I have quite literally, had enough.
David and I have rented a friend's apartment in Paris in the garden of the Palais Royal. I am here to rest, gather my thoughts and wits and, as they say, "Get my affairs in order." This garden also happens to be where I will have my ashes spread "after." So, as I sit here looking out of the window towards the garden, I don't know if it's comforting or horryfying that I am gazing at my own "final resting place."
Don't start crying yet, this could take a few months. I still have some work to do.
First and foremost, Grace. What to do about Grace? There are no answers to this question. There is no preparation adequate enough to remedy a mother's death. That's just a plain fact. There are no solutions good enough. All I can do is love her. These past few weeks have been brutal with Grace. Bad behavior has become our new normal, unfortunately. Grace and I are caught in the middle of a storm that won't stop and we both do not know how to weather this one. She is acting like a brat and I, in turn, am acting like a lunatic. The "How to Behave Properly" guidebook was apparently lost in our move from the states to Paris. Gracie and I have had some serious Come To Jesus Moments these past few weeks. Neither of us have come up smelling like roses.
My best friend, Yolanda, and I have had daily conversations about the reality of being sick, super sick. We have marveled at the side effects of terminal illnesses... The behavior of others. It is filled with roses and thorns. Just this past week I have been betrayed by my sister, my mother, my insignigficant father, Gracie's father and one of my closest friends. This is the thorn of getting weaker at the end... The wolves start sniffing around and when you are at your weakest, the wolves attack. #NeverLetYourGuardDown
On the flip side, roses emerge in the form of a cherished friend, Mer, who showed up in Paris with hugs and alcohol.
My friend, Diandra, and I have had deep conversations about coming to terms with what is worth caring about and what is not worth caring about because in the end, the only thing that is important is how to leave this world a better place than you found it. I plan on doing that after seeking some revenge on those who deserve it... #IamNotThatEvolved
So, this brings us to today...
As I wait for the dust to settle, my day is consumed with very important activities...
Watching every episode of Broad City
Eating boxes upon boxes of chocolates
Calling all of my friends to tell them that I love them
Watching the ghosts of the Palais Royal walk around (I can see them)
Finishing my book (It will be ready next week)
Firing off nasty emails to those who deserve it
Sourcing the best Thai Coconut Lemongrass soup in Paris (it's the only thing I can fucking eat)
Apologizing to David for every rude comment that I may or may not have said to him
Going to my favorite church and telling God that I am ready
Washing my hair (It's been a month)
Knocking some sense into Gracie
Start drinking and doing drugs because why not?
Laughing a lot, wearing pretty pajama, using all of my good perfume, listening to my favorite music, crying like a fat kid, lighting all the good candles, eating fried chicken, spending too much money on flowers and...
Spending every day like it is my last... Because it is.
Godspeed Ellie. You are beloved.
ReplyDeleteEllie you have no idea how glad I am to be hearing from you. You are not as bad as you think you are because you are writing this blog post so that means you can talk better. God is listening to our prayers and still letting you speak!! I know as a mother the difficult time you are having with Gracie. Spend as much time as you can with her and just love and enjoy each other. It's all that really matters. Realistically everyone else in your life will move on over time but Gracie is your flesh and blood who you gave birth to. Assure her that you will always be watching over her and that even though you may not be here physically one day, you want her to make you proud. She will honor you forever believe me. There is no greater love than a mother and child, remember that! Live for the moment, enjoy this spring weather and I hope you get outside to breathe in the fresh Paris air. Thinking and praying for you.
ReplyDeleteOh Ellie I'm sorry this has been a time of so much turmoil. I have no idea what to say because it's all beyond me. I'm sure you'll hear many thoughtful and valuable responses from mothers who better understand. I was a total shit at Gracie's age and think my mom should have sought a very late term abortion when I was 19-20 years old.
ReplyDeleteOne thing I absolutely am qualified to say is that you will leave the world a better place than you found it. So cross that off your to do list and enjoy your crystal meth laced vodka butter milkshakes.
I can't get into Broad City. RHONY is off to a promising start.
Wishing you brighter days with all my semifreddo heart.
That wasn't meant to be a poem but I am just so macho and heterosexual that I accidentally write poetry about Real Housewives and Italian desserts.
this made me laugh out loud. thank you.
DeleteStephen Andrew;
DeleteYou never fail us!
Sheila
Dear God how can one person be so funny???
DeleteAfter some heartbreaking losses recently, I swore I would never let another person I love leave this realm without telling them - well in advance, because we never know the timing, do we? - that I love them. And I love you, Ellie -- without ever having met you (although we corresponded briefly when you were kind enough to reply to my questions on behalf of a son who was studying abroad in Paris). I have read all your blog entries, many many times over, and I have your Thanksgiving book, and I will be one of the first to purchase your new book, I guarantee. I love your spirit, your kindness, your irreverence, your honesty, your bravery, your writing skills, your style -- and on and on. You are beyond generous to share as you do, the positive and the negative. Thank you, thank you, thank you. And I love you. And I wish you and Grace and David peace.
ReplyDeleteMy dearest Ellie, I write this with a smile as tears roll down my face. I shared one of your blog postings with a friend and she said to me that I was so fortunate to have met someone like you and I am, fortunate and grateful.
ReplyDeleteThere are few people in this world that have had an impact in my life as you have. I am so weak and sometimes I make myself stronger by focusing on your strength, I could never tell you enough times that you are amazing, that you are my inspiration.
Through out the past months I have experienced so much pain and you have been there for me regardless of what was going on with you, which made my problems by comparison so very insignificant. I will never forget your advise and how you didn't judge me or told me that I deserved it for choosing and trusting someone that I should have known was not honorable or trustworthy. You are the rock for so many and I my beautiful Ellie we will never forget it.
I love the gardens of the Palais Royale and always visit them when I am in Paris. I know that I will see you in June and I will visit you every year in those gardens which will now have so much more meaning. There are so many things that I would like to say to you and that I hope that I can say to in person but specially I want to say thank you. Thank you for helping me through some very difficult times, for supporting me and letting me know that I was a valuable person at a time when I didn't feel valuable at all, for having let so many of us into your life, for sharing your struggles and never making it look pretty, for being real when real is so hard to find and for always always caring. One of my favorite books is the Velveteen Rabbit, I try to live my life always being real, it is not always easy but you have mastered it, you are and will always be real not only to yourself but to each one of us.
I can't promise that I will succeed but I am going to try very hard to continue smiling throughout the tears and to celebrate you by being a better person and by continuing to make efforts to leave this world better than I found it. I have felt much sadness lately I experienced a horrible betrayal at the hands of someone that I trusted 200% and at a time when I was most vulnerable I had to realize that the past 9 years of my life were all a lie. Yet I have chosen to not feel angry and to not feel hate, Cant help the sadness or the pity that I feel for this person who is just incapable of loving and accepting himself and in turn hurt someone that truly cared about him, sort of like the betrayals that you have experienced. I am saying this to you because I could have never been this person without everything that I have learned from you. I do not want you to go, yet I know that I have to trust your judgment that it is your time to go and rest assured that you have left this world a better place than you found it. I promise you that I will never forget you and that I will try my best to smile and not cry and to continue asking myself "what would Ellie do?"
I love you girlfriend and if there is a heaven I know that you will decorate it beautifully and have lots of chinoiserie and gilded mirrors just the way that it should be. And you hang in there and wait til June, don't you dare ruin the highlight of my trip, seeing you, I love you to the moon and back xoxoxoxo
Dearest Ellie I hope with all my heart that the relationships with your mother,sister,father, former partner and friend can be resurrected for your sake as well as Gracie and David. I hope they find the inner strength to do the right thing by you. You are one hell of a woman- I admire every atom of you and know you will be you forever. I am so looking forward to reading your book. May god give you strength and courage and plenty of tasty soup and chocolate and champagne. Love R
ReplyDeleteOh Ellie, i,m so sorry you have to go through this all..
ReplyDeleteBut you are right, best to bow out gracefully after all this shit,i really hope you can make peace with Grace and your family,if not F*ck Them( not Grace) I wish you peace of mind these days and know only you know what and when to do when the time is right!
Hugs
Esther
Ellie,
ReplyDeleteThis is my first time posting a comment. I don't believe in "revenge", but I am not going to stop you. Sometimes silence is the worse of it all. I've had a pretty rough life, but never seek revenge, as those weren't worth my precious time. Is it really worth your last moments?
Gracie, is going through a tougher time than you are. Kids don't know how to express their frustration. She might not be angry at you, but at God? Life? After all, it must be hard to see your mother suffering and you know where it is ending. Drink your wine, do all the drugs in the world, eat whatever pleases you... live it to the fullest. Live the moment, spend it with the ones that matter the most important leave the ones that mean shit...
Ellie, you are an amazing individual, mother, daughter, sister, wife, patient. Don't forget it and don't let any one tell you otherwise.
With lots of love,
Katie
I love you and will always love you. You leave my life a better place than you found it. And I will be looking for you around every corner. Laura.
ReplyDeleteYou have been on my mind and in my prayers constantly. This is a tough read for your tribe so I cannot fathom what it is like for your loves. Thank you for the brutal honesty of your life these days. It's not pretty but it is yours and that is why I have loved you since I stumbled upon this blog. Peace, friend. The peace of the universe to you.
ReplyDeleteI have been sitting here in the states wondering what the hell does she mean by tomorrow, get the darn blog post up already, who does she think she is promising a post and then making me wait.
ReplyDeleteIt was worth the wait and not worth the wait. I am so happy that you got better and sad that it was not going to be forever. I hate what you are going thru with your daughter, but I understand exactly what is happening, she loves you and doesn't want this to happen so she is fighting. I bet she thinks if I keep yelling, she will not die because she needs to get in the last word.
As for your family, I just don't understand. If they had to go back home to their lives, I get it, life does not stop for anyone but it sounds like so much more. If that is true I am very sorry for your pain and disappointment. I will not make excuses for them, they are adults and should realize you need them but WTF???
Moving on, I can not wait for the book, hurry up already.
Thank you for your brutal honesty, not many of us will have to face decisions and situations like this, ever. It is a real eye opener. Getting your affairs in order, dealing with family and knowing the end is your decision is beyond me. I hope you have found your peace. I hope to hear from you again. I am happy I have gotten to know you, the good, the bad, the ugly and the honesty. Your struggle has made me realize life ain't easy but it is good.
Prayers still coming your way. MB
I don't know what to say other than I am thinking of you and swearing to myself that this is your situation. You enrich my life. Thank you so much for sharing your time. xxxoooo Suz from Vancouver
ReplyDeleteI have seen the wolves in my husband's family regarding my mother inlaw with alzheimer's. It's sad and disgusting. I hope your wolves get tamed and get their common sense back. Bless you and continued prayers ❤
ReplyDeleteYou expect no tears??? I can't bear the thought of you facing these days. I pray for peace and some comfort for you and your family/friends. If you are able to articulate how people have betrayed and disappointed you it would be helpful to those of us facing loved ones on a similar path. Not a detailed record of their failings but a hint of ... ' Did they fail to recognize your fear, did they make you feel like you owed them something?' I am so afraid of failing to give them the love and support and kindness that woud help each day.
ReplyDelete#not ready to let you go. As we say in Australia 'you're a top chick'. Keep being you x
ReplyDeleteSo hard to read, my inner Pollyanna still won't stop wishing for a miracle. My other wish is that you find the best kind of peace with the decisions you're making, to think otherwise is an utterly unbearable thought, you more than most deserve the most perfect in this shittily imperfect crapfest of a situation that's been thrust on you. I hope you know that you have made the world a better place, your influence through your blog alone has had an impact on many of us on here, in hugely positive ways. I've made changes to stop being so bloody pathetic and stand my ground more, to starting plans for a small business I've wanted to do for nearly 20 years and haven't had the confidence to do. I'm sure many others have their own stories too. Wishing you all the very, very best. Oh and nothing hurts quite like family or close friends doing a number on you, especially when weak, I know, go get 'em! #notthatevolvedeither PJ
ReplyDeleteGo in peace, Ellie. Please realize that Grace is not fighting you, but the terrible feeling of you being gone. As long as she's fighting, she's feeling a powerful feeling of you being HERE. Be kind. And think of yourself as a teenager. When I do that it always makes me smile and laugh and think, "what idiots we were". God bless you.
ReplyDeleteEllie---I did cry, right before I read your next line--"Don't start crying yet.." I am blown away by your gritty honesty in the face of your own mortality. I want to just fly over to you and help you with your list of things you want to do--and also just tell you that this world is already a better place because of you--beautiful, gutsy, kind, tell-it-like-it-is, salt-of-the-earth, one-in-a-million---marvelous you. I don't want you to go, but I have no right to tell you to stay. I am being selfish. You are now a part of my life and I can't imagine not being able to keep in touch. I also feel helpless that I have not been able to "give" back to you--I know you have your dear friends, husband and daughter--but I feel guilty for just "taking" and not giving. So all I can do is tell you that you ROCK--that you are loved and adored by us all. I am a pretty picky person about who I like--and you just had me at your first post. Girlfriend, you are the coolest ever. So, I will stop being a selfish ninny, and tell you that I am going to pray to the powers that be that you have the time and strength to live out the rest of your life the way you need to do to go in peace. (And I will also pray for a cure for ALS--cause who knows, and why not keep plugging away.) Sending you hugs, kisses, love and peace.
ReplyDeleteBRAVE GIRL..........Love that you are in the PALAIS ROYAL.
ReplyDeleteSounds like YOU have WONDERFUL FRIENDS.............it's GOOD that WE can pick our friends as FAMILY somehow CAN DISAPPOINT.AS for GRACE............she is YOUNG and SCARED.Just be with HER........and get the important STUFF written down.
As for YOU over on my BLOG WE have a little AUCTION happening of a white CHANEL Handbag from the 70's or 80's.Plus, an Edwardian Garden Dress that was DONATED on your behalf................ONE of your READERS sent to me to sell at THE REMNANTS of the PAST SHOW this weekend.I have taken it a step further to offer to YOUR READERS..........I hope that is OKAY!Please visit THE VINTAGE CONTESSA.NET if you want to participate in some FUN on her behalf!I must JETE off this computer and start the SET UP for the show...................
Ellie.............GORGEOUS YOU!A BIG HUG thinking of YOU .........XOXOXO
Oh my dearest Ellie. Do anything you feel like doing. Deepest love and prayers to you and for you. Ruthann Pyle
ReplyDeleteI don't know what to say except "I love you". I've never met you personally but I feel like I am losing a very close, exceptional, amazing, spectacular friend. You are a powerful force in this universe.
ReplyDeletexxxxoooo
Joi
Sending love.....
ReplyDeleteBonjour Ellie, happy to hear from you. You are such an inspiration, my God! You are a strong women you keep showing everybody what courage, determination etc is! You amaze me! Must be difficult to come to a point like this, with your daughter, husband etc. You say your sister and mother betrayed you? I don't understand what happened there but they should be with you and try to help and enjoy the "le moment présent" with you. Your daughter must be angry, lost, scared with all of that, I guess it's how she deals with the thought of losing you, must be very hard for a young girl! I will pray for you and sending you all my love here from Quebec city hoping that you will get better. Bonne journée et bon courage xoxo
ReplyDeleteI love you Ellie!
ReplyDeleteForever more I will contemplate looking out that same window.
ReplyDeleteYour fierceness has nestled itself into a very comfortable spot in my mind.
Thank You
Angels to you Ellie.I just love you and your courange.Otherwise I'm speechless.
ReplyDeleteThe only thing that is lasting in the physical world is the love we gave and received.
ReplyDeleteI love you Ellie. You are in control. (I will curse all the people that you are cursing and they will get the message.) I will visit you often in Le Palais Royal. Hugs from NYC, Susan
DeleteEllie love ~ When you get to that favorite church to tell God you are ready, be
Deleteprepared to hear Him tell you when He is ready... you have accomplished so much
and it is not over yet...you continue to change lives and eternal perspectives..
I mourn the betrayals by those you trusted and the Daughterly angst that is a
veiled denial of the depth of Gracie-love that cannot bear to be denied the
source of her being...be patient...sans regret... For the time being, you have
to stick around...you are the only one who has been able to use the F word, blatantly, jugularly, whimsically, comically and spontaneously without offending these convent school-developed sensitivities....just love the way they pop up and leave me in a chuckling fit ... That being said, I embrace you
in loving prayer and say how grateful I am that we have been on the same planet at the same time, when you ordained to bless us with your fabulous blog and open
heart.....Be in peace, little one, and trust in Him for the time...
Oh Ellie, I wish I could make things better for you. Please know that you are in my thoughts and prayers. Eat and drink and do whatever makes you feel good and screw those bitches!
ReplyDeleteJust know that you have already made the world a better place. Your posts have always lifted me up, made me laugh and wish that I could seek a little sarcastic revenge as beautifully as you do.
ReplyDeleteGracie knows your love. The arguing and fights are there own language of tremendous love, and both you and your beautiful Gracie feel it to the depth of your being.
Eat those chocolates. Watch some really terrible shows, and hopefully feel the thankfulness and caring of someone you will never meet that you have changed and inspired. (Now I am thinking about shooting off a few pointed emails of my own...)
I love you Ellie.
ReplyDeleteSincerely,
Debra from SENC
Oh God, Ellie. I wish I knew what to say to you about Gracie. I think I know this: she is terrified of being without you but she will be all right. How can she not be? She has lived her entire life with an amazingly strong and brave woman. You have shown her how to live and love...and cook. Your love will be with her forever and she will miss you to the day she dies. That, my dear, is your "last word". Peace and blessings, Ellie. My thoughts and prayers are with you and your loved ones.
ReplyDeleteGracie WILL BE fine... she is your daughter after all.. remember that.
ReplyDeleteWishing for you everything as you want and as for the Palais Royal... I couldn't think of a better place in this world to rest... and don't think we won't be visiting and uttering a few hellos, a few miss yous and an expletive or two... ;)
Love to you and thank you for the smiles, the tears and most of all the laughter... xxxx
Ellie you are the coolest person on this earth.
ReplyDeleteJe t'embrasse, Anne
Like I've said before ALS sucks-my sister went the way you are-with dignity-you are both brave to me- love from California
ReplyDeleteI am so fortunate to have known you through this blog! I wish I could somehow repay you for what you've given me. What a beautiful, lovely, absolutely sublime resting place you have. That is so important!!! My mother is in the final stages of Alzheimer's at the moment. Our family is falling apart including me - the "strong" one. This is no way compares to your situation as she is almost 83, if she makes next month is her birthday. It is the only way I can relate to your situation. One thing I'm grateful for is that she had a relatively long life, she got to see her children grown - although I'm sure she's a bit disappointed in how it all turned out. I cannot give you that, if I could I would. A long life and to see Gracie grow up - all the way up, get married, give you some grandbabies if that's what she chooses. But I know you will be there with her in another form and that is huge. Another form that has this palace garden of a resting place. In trying to find my mother's final resting place and making all the arrangements if you will, my father has excluded me and it's killing me. His taste on a level of 1 to 10 is minus 335,000. He has the money to give her a beautiful final resting place and what he has chosen is tacky, tacky, tacky - money saving gross tasteless. So after he is gone I will be digging her up, putting her in a tasteful coffin and moving her to a private resting place. It will cost me astronomic amounts of money of which I really can't afford, but it's that important!! This is why I think it's so fabulous you have this sublime beauty to rest in. You are going somewhere better than all of us. You deserve the best. I believe your family just doesn't know how to handle this final piece, but who the hell does. We are all doing the very best we know how and sometimes we stray, but ultimately it is what we are trying to do. I'm sure seeing you suffer when they love you so much brings out so many conflicted emotions and when you are there face to face confronting them all as I am currently with my father and mother it just gets ugly when you want it to be beautiful. God speed and I hope you visit it me when I come to Paris and help me a bit because I know I'll get lost. It's my dream city. The most beautiful city in the world and I cannot think of another individual who belongs there permanently more than you. xx Valorie
ReplyDeleteNo words!! Just much love and prayers!! Loreen
ReplyDeleteThank you for being such a gift!!
Dear beautiful Ellie,
ReplyDeleteWhen you do finally leave us you will be in Paradise....
Please never forget us, you are a part of us.
We love you and will never be the same because of you. God bless you on this journey.
a. This sucks shit.
ReplyDeleteb. Are there really ghosts?
c. Try Tom Yum soup, but don't choke on a mushroom or a prawn.
d. Some people just suck horses' balls - it's just extra irritating when they happen to be related to you.
e. All you can do is tell Gracie that you love her - and that really is all you can do.
Keep'a drinkin' and a druggin'.
Going to check out broad city now (catastrophe is great too, check it out in the midst of death planning).
Much love and sympathy - Edith, Edna, Esme or Ermes. xxx
You have left this world better then you found it. You have changed lives you will never know. Thank you from the bottom of my heart
ReplyDeleteTruly remarkable, as always. May you, and those who love you deeply, be granted as much peace of heart and peace of mind as possible now and in the days ahead. Sincerest gratitude to you for sharing your personal and profound journey with us. We are all the better for it. Bon courage.
ReplyDeleteYou've carved a special place in our hearts....love you
ReplyDeleteIt's hard to comment after such a post - it all seems a bit feeble to follow this but I wish you as much comfort and fun and I do look forward to your book and hope you are recording lots of stories and thoughts for your second book x
ReplyDeleteWishing you so much peace my dear Ellie. Also, enjoy the revenge.. it's sweet :)
ReplyDeleteEllie, there are not enough words to express how much I have enjoyed knowing you through your blog. Wishing more than anything that you have peace today and always. To say you are special is an understatement. I think of you every single day and pray for you. What an amazing woman you are, Ellie. You will do the right thing, as you have always done in this life. My sweet, Elie, I love you. Hugs, tears, and sadness, Gina
ReplyDeleteMy heart breaks for you..not only for the inevitable but for the betrayals...I love you dear Ellie, you will always be in my heart...always....xoxo Jeannie
ReplyDeleteDear Ellie; As a woman who lost her mother at the age of 7, I can totally understand Grace's behavior. She is terrified. It doesn't make it any easier on you, but she just can't help it. Hold her. Hold her as much as you can. She knows you love her. And we love you. Love, Ellen
ReplyDeleteBravery, honesty, dignity, grace (either Grace or grace): damned good marching orders for us all.
ReplyDeleteThank you for this post. We all needed it today.
Grieving. We do it so awkwardly and sometimes stupidly. Let the family shit storm go on with out you. You have other things to do. A toast to you sweet girl.
ReplyDeleteThe Palais Royale is so beautiful and I hope that garden is an oasis of beauty and tranquility.
ReplyDeleteMy heart goes out to you at this time. You have touched so many with your courage, creativity and honesty. I wish things were different and that a miracle will happen...for you.
It is unfortunate that your family are being difficult and I hope they will patch things up. Grace must be so scared...and there are no rule books out there to guide us.
Rest up and savour all the beauty that surrounds you...wishing you the BEST of everyday.
I can't imagine what you're going through. I've not been in your shoes. Well, I wouldn't fit in your shoes my feet are bigger than yours...Oh wait what was I saying??? Oh, I've seen death when my father, mother, brother and in-laws have passed on to the next destination. I can't, however, wrap my mind around saying goodbye to a child. How incredibly difficult. I know you don't need the rest of us to validate you. You are a force to be reckoned with. What a beautiful place to say goodbye and to know that all of us will think of you when we visit. My prayers go out to you and to your beautiful Grace...and your loving family. To Grace try to remember every line of her face, every smile, every hug, every I love you and forgive her going so soon. Love and hugs.
ReplyDeleteDear Ellie, I am wishing you peace in these days to come and hopes that you can reunite with your family. Your bravery is astonishing, so many of our loved ones do not know how to handle a situation like this and I do understand how disappointing it is.
ReplyDeleteLove and hugs,
Karena
I love you Ellie. Thank you for you shinning smart mouth courage.
ReplyDeleteSandra Sallin
I will miss you and your humor Ellie. I found your blog a while back, not sure if it was France related (I love everything French) or ALS related (lost my mom to also several years ago). You always leave me smiling. I hope the best for your family and pray for your journey.
ReplyDeleteThis is the first blog of yours that I have read. I so hope it won't be the last. I now intend going back and starting from the beginning. I don't think I have ever read anything so funny and so courageous. Good Luck with your fight(s)
ReplyDeleteDearest Ellie - Happy to finally see this post but very sad, too. Those of us who have followed you for several years and have read every back post, knew it would end this way. You told us yourself a year or so ago with "Broken Hearted".
ReplyDeletePlease reconsider your "Revenge" emails. The good people you may have thought "betrayed" you will be hurt and insulted. The bad people will feel justified for having hurt you and will just laugh at your pain. It's better to just let it go. I know from experience.
The Ancient Egyptians believed that every time your name was spoken, you would live again. Hence, all the tombs, obelisks and other monuments with their names written all over them. Your blog, your books and the goodies from your shop will perpetuate your memory and you WILL live again in our hearts.
In your short, 40-ish life, you have experienced more privilege, seen more beauty, traveled more and known more interesting people than 99% of your readers could ever imagine. The party is over. You have struggled valiantly at the edge of the black hole called ALS. Now, the fight is over. Once your affairs are in order, relax and enjoy the flowers, perfume, music and chocolates. Then, at the end, a nice, gentle Morphine drip. You will simply doze off.
"Goodnight, sweet Prince(ss), may flights of Angels sing thee to thy rest." (Shakespeare)
I love you Ellie and you know best
ReplyDeleteEllie, I am so sorry that you've had further pain heaped upon you from those who should be surrounding you with love and light. You are so loved by so many. I am happy that you are with David in one of the most beautiful places. I want to tell you that you have taught me so much, you have made me laugh and cry (often simultaneously) and you are my hero and my role model - I aspire to be as good, brave, intelligent, kind, open, dignified and wonderful as you are. Much love Ellie, sending you loving light and peaceful energy. May you go in peace. Sherry
ReplyDeleteYour angels are circling
ReplyDeleteand they are beautiful
listen to their song
calm
love
they are ready.
Please Ellie hang in there. Don't go! We miss you and your posts already. I was so happy to hear 3 days ago that things were getting better and then why this sudden change... I am so sad. Please believe one more time in miracles & prayers. XXX
ReplyDeleteThank you for sharing so much of your love and passions on this blog. You have lifted the spirits of so many people. How wonderful to have these writings and your books for your family, especially Grace. I imagine your words will be shared with many generations to come. I love that you are in such a beautiful place and wish you peace and love.
ReplyDeleteLike others, I think you are my friend. And so I am going to tell you I love everything about you that I know.
ReplyDeleteAnd, I look forward to your next post, damn it.
As I read this I am reminded of a Christopher Hitchens quote: ..."In one way, I suppose, I have been 'in denial' for some time, knowingly burning the candle at both ends...and finding that it often gives a lovely light...
ReplyDeleteWishing you and eternal lovely light...
k
Such a fucking cruel illness - it stinks and I would only wish it on my worst enemy (and she knows who she is - never mess with a Scorpio). My darling father in law had MND and bowed out at the end. As heart breaking as it was, all of us who loved him totally understood and made his decision, hopefully, a little easier with everyone's blessing. I wish I had a magic wand Ellie because although we have never met, my God I'd be waving it in your direction. Stay strong and when you really can't - do what the hell you want/ can XX
ReplyDeletePeace and Love Ellie... God Speed!!
ReplyDeletePeace and Love Ellie.. God Speed...
ReplyDeleteEllie,
ReplyDeleteI, for one, will purchase and enjoy hearing your voice in your book. I've been reading your blog for about 6 months. And, here's the most inappropriate thought I've ever had..."I'm a bit envious that you get to be your absolute authentic self!" I'm so sorry for all the suffering you've had to experience and no-one should have to bear that. It is not fair. That is how I would feel. But, I'm truly lifted by your blog and recognizing someone who is not afraid to be who she is. Just being exactly who she is in the moment, the good the bad and the ugly. Good for you! Peace to you in as much as that is possible. Diane, SF Bay Area
So little to say...... I will miss reading your stories. I will buy your book as I know having the proceeds go to Gracie towards her future are so important to you. Having an illness which could be terminal I have made some decisions which mean I will be able to make the choice as to when is right for me as you are deciding when is right for you notwithstanding you would make a different choice if circumstances were different. Gracie and your family will forgive and understand. By sharing your thoughts and feelings you will continue to influence those who knew you and live on long after you physically leave this earth. So sorry to have never met you but in reality had I, I would have likely found you intimidating.... not a reflection on you but of me... hugs and so sorry that someone who loves life so much should be gone way too soon.
ReplyDeleteyou are amazing. i'm so sad that everyone is not being amazing back to you. i can't imagine having the conversations you are having right now with your dear Gracie and David. my heart breaks for them and selfishly for myself and all your readers. thank you for your honesty, your verve, your taste and your humor. love, Lauren
ReplyDeleteI really believe that some things won't change. You will still be kicking derriere when you decide to cast aside the mortal coil. All things "above" and "below" better watch out b/c no matter where you are, you always make an impression and have an impact.
ReplyDeleteMuch love beaming its way to you. Love is the only thing that matters: feeling it, sharing it, giving it, absorbing it.
Ellie, you may feel on the ropes, but you are still Da Bomb. Period.
Again, I must thank you for sharing this journey with us readers. I am profoundly sorry for what you have been and are going through. The ability to still have a sense of humor while dealing with all that you have been through is truly a gift from heaven. I am sorry for all who have disappointed you during this. I will continue to pray for peace for you and your family. I can't wait to read your book. I will miss you when you are gone. God Bless you.
ReplyDeleteDear Ellie, few bloggers will have made such a lasting impression as you, few will have touched as many people, and as deeply as you, and I guess that none of us can really imagine what you are going through or just how brave you are.
ReplyDeleteYou and I never quite managed to meet, but I think I am not the only person to have been influenced by you and your attitude to life. You have added an urgency to my everyday living, to making the most of every moment, and to being thankful that I can get out of bed each morning and make the most of the task in hand.
Feeing discouraged by small setbacks is no longer an option because you have shown us what one person is capable of faced with the biggest setback imaginable.
Thank you for all you have shared with us. Know that you are loved and respected. Our thoughts are with David and Grace, and your family and friends.
love to you
Sharon
Each person's life, ultimately belongs only to them.
ReplyDeleteI love you dearly and am so grateful for every thing that you have brought to us, shared with us, of your beautiful self. You have changed my life, you have made me stronger and smarter and more courageous. I cannot thank you enough. You have given so much, so very much, to this strange and beautiful world. So now, Ellie, I give to you in return, my honor and respect for your decision and your wishes for this time of your well lived life. It is small gift indeed, but is given with love and gratitude.
I will be here and I will keep seeking you out and reading you until the very last moment. And then I will go back and read it all over and over again. And I will treasure this amazing last gift that you leave to all of us - your elegant and honest book. Thank you, thank your for this last effort. It is kindness beyond kindness.
It sounds trite, Ellie, but I will never forget you. How could I? How could anyone? You are a game changer. You are simply and utterly amazing.
You will keep on decorating and bringing beauty and charm and that razor sharp wit to this world because your gifts will endure. And soon you will have a whole new world to whip into shape and decorate the hell out of...you'll have your work cut out for you!
Finally, I hope for strength and clarity for Grace and David and all of your family and your beloved friends and also for you, Ellie.
Je vous adore, vous petite deesse. xo
PS: Now that I've said all those true and deep felt words.
ReplyDeleteI want it stated aswell...that this sucks, this fucking, fucking sucks!
Jesus christ, Ellie this fucking sucks. I know you'll get it, I'm pissed as hell, baby, and I just want to smack the powers that be! I know you'll get it. Anger has to go along with this, I can't hide this. You are the best, best, best and I'm fucking pissed!
With LOVE.
Liv
Quickly - because honestly who cares what we think and the meter is running - 1)One mom in your shoes wrote letters to her daughter, each labelled with an age or event to be opened at that time. Too bone crushingly sad? Probably; 2) Revenge is such a loaded word. I like #settingtherecordstraightbitches. Say whatever the hell you please. Note to self, screw me once...At least here, chronic illness brought out the worst where one least expected it. And lastly - I am so, so, so sorry. If words were wishes, and wishes were deeds, you would be doing cartwheels. Possible clinical trial? Is it really time to say goodbye?
ReplyDeleteAfter reading your words and all the previous comments from all your friends...my words lose their power and pale in comparison. I will say only that I am sending all good and happy thoughts for your continued grace along with humor, love and gentle peace. Blue skies to you...Sally
ReplyDeleteContinue to channel your inner bad ass. You have made me wonder, oh how I wonder. We are all broken little soldiers who battle everyday. Thank you for helping me aim a little higher each day. Peace be with you.
ReplyDeleteThis sucks. I notice Jenny isn't mentioned; I hope she wasn't the friend to betray you but if so, fuck her. No time for that. Thank you for letting us into your life and please keep posting if you can. We have never met but I think of you constantly.
ReplyDeleteThe moon comes up.
The moon goes down.
This is to inform you
that I didn’t die young.
Age swept past me
but I caught up.
Spring has begun here and each day
brings new birds up from Mexico.
Yesterday I got a call from the outside
world but I said no in thunder.
I was a dog on a short chain
and now there’s no chain.
- Jim Harrison
Ellie... you are a class act in every sense of the word. Stay strong. I am in awe of your courage. You continue to be in my prayers. xx
ReplyDeleteI love how even during the darkest times you find humour. Wishing you solace.
ReplyDeleteBecause you are you, I know everything will come together as you would want it to.
xxxxx
Borrowing all these funny, witty, strong and fragile comments and wrapping them in a big heart for you. I think about you so often. I have learned so much from you. You have touched so many with your truth. Thank you, Ellie.
ReplyDeleteEllie, no mere words can express the love and gratitude you adoring fans are trying their best to say. Me included. I wish I could have meet you sometime in my life. I am praying for you to find peace with everyone around you. Grace is rebelling out of the fear of losing you I am sure. Tell her everything you can about how you feel about her. Someday it WILL mean so much to her. Love and peace, Vicki
ReplyDeleteWell, what to say.
ReplyDeleteThe same I've been saying a few times.
Ellie. Your'e always on my mind.
Praying for You and your family.
God bless.
leso in Sweden.
I have no words . Only tears .
ReplyDelete#fuckals
ReplyDelete#fuckals
ReplyDeleteOh thank you so much Ellie for sharing the most perfect you. You inspire me in countless ways. Sharing your life is such a lesson to all who read. You are truly the most amazing woman I have come to know. It is beautiful to know where you are going to be to live, love, contemplate and be with your lovely family. Sorry for the disappointment from those you mentioned. We need to keep close the ones who you know who have pure love for us. My prayers are with you every minute. We are thrilled you are continuing on right now and looking to read more from you. Gracie... hold her close. All we can do is our best. Prayers to you all for the strength to keep each other close. Love your feisty attitude.. you make me laugh. stefany guigli
ReplyDeleteQuiet reader here but no less impacted by your blog, your strength, your style and wit. I wish you and your family peace and love. (and please know I have stopped making my broccoli Xmas tree...I swear I thought it was cute)
ReplyDeleteYou are amazing. Gracie’s behavior is obviously her way to cope with the situation. The worst it is, the more you matter to her :) For Thai Coconut Lemongrass soup, try Piment Thaï 21. 21 rue Saint-Jacques. 75005 and Sala Thaï, 13 Rue des Frères d'Astier de la Vigerie, 75013. Love, Marie
ReplyDeleteI have followed you from the start....I too am better for (knowing) you. You are indeed everything that inspires me. Life IS SHIT sometimes and YOU know this BETTER than anyone. I knew one day I would read a post like this...How you write THE WORDS is beyond me. As a mother to both a teenage boy and girl I think I get it but OMG how hard it must be for her. My husband lost his brother to suicide and I think the thought of CHOICE to leave not stay with US may be at the crux of the matter with Gracie. Teenagers are intrinsically selfish...it is a state they have to grow out of, hopefully. I have never been to EUrope and we have planned as a family to visit PAris and Provence in July. Beyond excited a it is a LONG way from Australia. I will visit the gardens and whatever will be or has been I will feel you there. A wide all encompassing embrace to you for the now and the future. I love who you are. x
ReplyDeleteYour bravery; honesty & endless amount of courage leaves me speechless & your followers around the world are better people for having known you. Ellie I wish you peace.
ReplyDeleteBarb
Sending good thoughts your way. You are an incredible, gorgeous person inside and out.
ReplyDeleteI'm a fan of yours, also a Missouri girl. Sending hugs, love & peace... you are a class act.
ReplyDeleteHello Ellie,
ReplyDeleteYour blog did not arrive in my e-mail so I went looking for it today. I'm glad I found it, but fills me with sadness. It is enough to have to deal with your own situation, but the unbearable part is Grace. I was 20 when I lost my dad and he was 46 - it was so sudden and had no time for words. You will do what is best. You are very strong, but that doesn't make anything easy either. Life is very difficult, you make it more interesting and you are cherished. I am so thankful to have found you.
Wishing you a peaceful time Ellie. I don't really know what to say, but I do have some tiny understanding of what you and Gracie are going through, to some extent. As I have said to people after my Mother's death, the end is not a lot like the movies.
ReplyDeleteI can't tell you how much I've enjoyed reading your blog, and following your battle. Many thanks for all the laughs, the inspiration and the insight as well xx
Ellie, thank you. I have followed you for years and read all that you have generously shared. As others have said, you have made a big impact in my life and taught me courage...just by being you. You have been "the change" for so many. I wish you, Gracie, David and your extended family peace and love. May you eat, drink, drug and be merry. But I also hope you remain as PRESENT as you desire during this time of transition to fully experience what brings you joy and love. Hugs and love from Los Angeles, California.
ReplyDelete-Laura H.
Don't know what to say, you have made a difference in my life through your writing,thank you for helping us all to remember as caught up as we get in our trivial day to day bullshit what is really important - I know your daughter is just scared I can't imagine what she is going through you know how much she loves you - peace light and love to you on your journey
ReplyDeleteWTF do you say to a post like this? I can't imagine and yet I'm fully aware that I could get hit by a bus tomorrow and you will have a day more than I . It's surreal to read the thoughts and feelings of a person in your position. I wonder if I would be as brave and live life as fully ... Or would I feel sorry for myself and shrink inward. I'm praying for you as you transition to the next realm of being.. I believe When you close your eyes for the last time you don't see darkness - you see light. - who the hell knows if this is true but it's a good thought.
ReplyDeleteThank you Ellie.
ReplyDeleteYou changed my life.
I won't let the fear takeover me, because of you Ellie, because of you.
We don't know each other, but I love you for writing this blog, you changed my life. I wish peace to your heart and calm to your thoughts. I will forever remember you. Thank you.
Love from Margaret
(I wrote and deleted so much, so many friggin times, I just want to say: you did good Ellie, you did so damn good)
Oh, Ellie, this was not the news I expected! My heart is breaking…
ReplyDeleteYou say you want to leave this world a better place than you found it? How can you doubt for a minute that you haven’t when you read the comments your Readers leave for you? You are a powerhouse, an irreverent force of nature that impacts all those fortunate enough to have wandered into your world…you are beloved.
I am one of those who wandered into your magnificent, marvelous, melodramatic play, and I will never forget you, Ellie. How could I when I see so many beautiful things that caught your discriminating eye scattered about my home? I’ve never heard your voice and yet I ‘hear’ you every time I open the latest decoration magazine and see something beautiful…or dreadful, and I know exactly what you would say about it.
I will look forward to reading your magnum opus, but beyond that, I wish that you could make your blogs into a book so we could continue to spend some quality time (smile)…not to mention that altogether they’re the penultimate guide to good taste.
I’m so sorry you’ve been betrayed, and that these precious days are filled with turmoil. As for Grace, it’s no doubt the uncontrollable anger that comes from an unwanted and unimaginable separation. No time on earth could be long enough to share with the mother she loves or to prepare her heart to say goodbye. I don’t think I can say it either…
Love you, Ellie.
XOXO / Nancy
Hi Ellie, I have been following (stalking) your blog for more than a year and never commented on anything. BTW, enjoyed it very much! I don't think I can even offer any words of comfort, they would seem very shallow. But I will say as a mother of an only child-daughter you have certainly made the world a better place. This will not be a winner with all but I don't really care... there is NOTHING in this world greater than IF you are given the gift to carry and raise a child that you do your very best. It certainly seems by all accounts that you have. Gracie will be in my thoughts and prayers. I bet she is angry and she should be. She probably feels cheated and she is. You're supposed to be there for her. To be at her wedding, hold her babies, put up the Christmas tree and cook the turkeys. I can't even imagine... in my life this would play out like "Mom, you can try harder, you need to do this, this and this... I am going out to play poker". Gracie will be OK because you helped her build a strong foundation. If you are a spiritual person and I believe you are, I would remind you that God's promises are true, HE is steadfast, never changing, never will betray you and can count the hairs on your head. Peace be with you Ellie.
ReplyDeleteDearest Ellie, tears are flowing (even though you said not yet). You are such an extraordinary woman and a true inspiration. I wish the very best for you, David and Gracie, and I hope your family pulls its collective head out of its very large ass before it's too late. Much love to you. (I'm not that evolved either, so go for it.) xoxo from Montana
ReplyDeleteDarling Ellie, I was saddened to read your post and am sorry that at this critical point in your life, you have been disappointed by some people who are supposed to be supporting you. You can be certain that you have hundreds of of online friends who are praying for you, Gracie and David every day and send best wishes your way. Gracie is terrified of being without you and cannot deal with the idea of of such a loss. You have brought so much entertainment, education, laughter and fun to so many of us - and you have dealt with your illness in a straightforward and courageous manner. I am in awe of you and your grace under extreme pressure. Although we have never met, I count you as a friend and have laughed and cried at your posts. May your guardian angel keep close watch over you.
ReplyDeleteWhen my mother passed, she saw a pink light. No doubt it will be so for you, and brilliant gold as well. I don't know you personally, and you don't know me, but I am asking her to be waiting for you. She was a tough girl too. She's waiting on that first cloud to the left....Many many many hugs for you and your family. Laura
ReplyDeleteEllie,
ReplyDeleteI just want to know in your experience ...what was worth it in life and what wasn't?
You know the old saying?...it isn't what you say to people, it is how you made them feel. You've got that one in spades. Be the best, truest version of yourself and you have lived well. I believe you have. There is beauty and ease in releasing that which does not matter and also allowing for what may be out of your control...I know...aside from ALS...those around you that may not be able to rise to bearing witness to your life as it is...not as they wish it to be. One of the greatest skills I have learned (late!) in life is to be fierce enough, comfortable enough to bear witness to the feelings and events of those around me. In letting them be...be released...be expressed...I have found so much healing for all those involved. You have provided the opportunity for those closest to you to rise and bear witness, but for some, it is their own limitations that prevent them from experiencing this growth in love and compassion. They are still evolving. Your life will bring meaning for generations. Sometimes we don't act/say/do what reveals our highest self....sometimes we need more opportunities. When this happens to those that were not there for you, your light will shine. Birthing Grace in more than one way. Much love to you all. xob
ReplyDeleteHi Ellie, Thank you for being raw and real. I have a daughter too and I think Gracie is fearful along with other family members. Fear is very powerful and can cause us to behave and say hurtful things. Ellie, be still and KNOW that He is God..Psalm 41:10. Trust in Him and draw near to Him and He will draw near to you. Spend your days doing that and He will take care of Gracie, your husband and those around you. Trust Him with Gracie and know that He will send people into her life that will add and be a blessing. Let go of the fear of how
ReplyDeleteGracie will be and enter into the rest of the Lord. He will take care of Gracie. He cares about the birds and He will take care of your precious daughter. I'm not afraid to die and see the Lord but I'm afraid of how I get there but I trust that He will give me the grace to die. I love you and I look forward to meeting you in heaven. Revelation 21:4 says..He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passes away. Trust in Him and He will take care of the rest. Blessings, xo
I've read this twice today..there just are no words...but, I came across this today and thought Ellie might get 1 min of diversion or peace from this.pull up Carrie Underwood and vince gill's performance of How Great Though Art.xo nancy in texas
ReplyDeleteI am very lucky to have found your blog.
ReplyDeleteYou have inspired me so much.
Thank you for telling us the hard truth ,not many people are honest.
Love to Gracie, its so difficult for her, send her a letter if she won't let you talk.
I pray every day for you . I wish to become a woman like you .STRONG Liz 2B
I echo everything everyone else said. Your post made me laugh and cry, as they so often do, and it's why I love your writing so much. Even though we've never met, I love you. You inspire me to be a better human being. Sending prayers to you and Grace and David. Wishing you blessings and peace. Love from Marilyn in Lacey, WA.
ReplyDeleteI am gob-smacked! I thought if I wanted you to heal, to get better, along with so many others, then, it must happen... I do want you to hold on, fight some more, resist the urge to give in, give up. I think somewhere in my brain, I know it is shitty for you, but I can't let you let go of yourself. The timing does not seem right, and your spirit is too big. I want you to hold on; and by god, I hope that is not for my own selfish reasons. It might be and than again it might not be.....
ReplyDeleteEllie, Your blog has been so real and emotionally heartfelt. It has been the most open and sincerest
ReplyDeleteblog that I have followed to the point that it has raised a volume of emotions within me. Bless you and Gracie. She loves you so much and how blessed to have each other. I could not believe as I read this post that you are facing this time in your life now (even though you often said it would come) and letting us share in your journey. You have touched us all with your courage and inspiration. Praying for you...
Dear Ellie, its nice to hear your voice again. That's the Ellie we all know and love. You are one brilliant and courageous woman. I lost my dad when I was 11 and felt abandoned. Maybe Gracie feels this way too? It hurts. She will know one day that you are the strongest, bravest woman she ever knew. You will be her rock star, her role model. She'll know you did everything for her. Love you.
ReplyDeletedear ellie, you are one amazing human being and even if we don't know each other, it feels like i know you. you are such an inspiration to me. i'm sending you all this world's love and strength. <3 stefania (zurich/switzerland)
ReplyDeleteDear Ellie
ReplyDeleteYou have already made the world a better place and you are such an inspiration to all of us out here who read your words - You write with such bravery, honesty and raw emotion not to mention humour. Daughters can be hard to deal with at any time I find. Sometimes I feel totally irrelevant in the lives of my daughters and it hurts. I know they love me but they don’t show it much. One I can hardly have a conversation with as she is constantly correcting me or challenging me or whatever. I tend to give up. The other was a real sweetheart but has recently had some counselling and has decided she needs to be more assertive so now she is becoming like the older one! I don’t think I am hard to get along with or that I interfere in their lives at all. WTF it’ a mystery to me. I (and my husband) devoted our lives to them, supporting them in what they are doing etc. and always thought I was a pretty good Mum. I’m on the verge of telling them how I feel actually as they don’t even return my texts. Anyway - enough about me. I am coming to Paris in June and I already know that I will be thinking about you when I’m there. Just think of all these people around the world who are thinking about you and praying for you. It’s sort of remarkable isn’t it when you think we have never met. That’s how inspirational you are - and those memories won’t go away. One way or another Ellie - you will be around for quite a long time. I wish you peace, love and grace and enjoyment of all those things you mentioned
Love you Ellie - Kate from Australia xxx
XOXOXOXOXOXOXOXO
ReplyDeleteAs always be true to who you are Ms. Ellie! Your daughter is just PISSED OFF thatbshebwill be saying goodbye to the brightest... most honest and loving person that will ever be in her life! Those that have betrayed you are not worth another thought... You make me want to be better... You have brought me back to life... Much love to you!!!
ReplyDeleteTotsiens Ellie, if I ever come to Paris, the first place I will go is to visit you in your garden. Love from Maggi sunny South Africa
ReplyDeleteSo proud of you for facing the crap head on. Family and friends can disappoint us badly, but I'm sorry that's happened to you. It doesn't seem fair, does it? And yet, and yet.....look at how much you are loved! And how much you will be missed. So very, very much. You will leave a huge hole but you can believe that Gracie will know how to fill it with something beautiful based on the courage she has witnessed in her beloved mother. She's going to be okay. I hope you know this in your soul before you leave us.
ReplyDeleteMy husband is on a journey with ALS, and he is at the same stage as you. Your blog has been a balm to my caregiver's soul. It also has made me feel better about lobbing around a lot of, um, invectives while trying to care for him alone for 19 months. We now have a cast of a thousand or so doing this, and they range in skill from zero to 100 percent. Greedily, I say don't leave us behind because you are so hilarious and interesting and your blog is the single written thing in this whole nightmare that made any difference to me.
ReplyDeleteI love you Ellie. Try not to be too hard on those people who you are having conflicts with. Your reality is too painful and real for some people to be able to handle. People think we can hide or run away from death but we all were issued a return ticket on the day we were born. You are going to be a hard girl to get over.
ReplyDeleteGirl, you did it your way...all the way. And, on your way, your family, friends and readers have laughed/snorted until Pepsi or Champagne came out of their noses, cried and swore. Plus, your design choices have been and are impeccable. Even choosing the Palais Royal Gardens is an impeccable design choice. Seriously, you have affected me profoundly with your courage, honesty and humor...and the pieces I bought from your sales.
ReplyDeleteLove you,
Robbi from Pittsburgh
PS #fuckALS
Ellie, all I can say is that I admire you all the way!!!
ReplyDeleteEvery word from you is a wake up call. Don't worry, everything will be good with Grace. She will have the strength of her mother!!!
I wish you all the Strength and Peace you need!
Wishing you the time you need to straighten things out and eat the chocolates. Gracie is your daughter and is strong and full of the love you're given her. You've made all of our lives better, we love you loads. Sending peace and a gentle hug to you Dear Ellie. XOX
ReplyDeleteAnd of course freaking Keith Richards is still in tip top shape. Love love love feel the love,
ReplyDeleteRegan
I've been checking my mail daily hoping that I would read that you were feeling better. But I also knew that that was probably a fantasy on my part. I remember reading your thoughts before when you were ready to give up, but you didn't. I keep hoping that your inner strength will kick in and we and your family will get to kick you around for some time to come.
ReplyDeleteDear Ellie, I am so thankful that we got to meet here in Provence. I would love to bring you and Gracie more hot chocolate chip cookies. Say the word and I'll be on the next train with cookies for you in Paris.
Thank you for all your words, thoughts, stories and honesty. We aren't ready to say goodbye so you will hear from me again.
Please don't waste your time and energy being mad.
I can't wait to read your book. I hope we will all get a chance to tell you what we liked about it. So don't go anywhere!
Hugs!
Judy
You are still the bravest person I ever haven't met. Sending you hugs from the nice part of Jersey. xoxo
ReplyDeleteAfter spending the last week reading and re-reading your blog posts, I have found an underlying theme of "LOVE" sprinkled in between your magnificent classic great taste, decorating genius, cooking expertise, goddess good looks, ALS sucks and kick ass no fear. Love of your husband, your daughter, your friends and us your followers. You have made an impression and a mark on the world. Towards the end of life, our circle gets smaller comprising those that truly care and as you said there are some surprises of who enters and exits the beloved group. With admiration
ReplyDeletePerfect said...
DeleteBeloved Ellie, Yes, life does suck (at times) but you have showed me how to live it. The past two years I have struggled with two major illnesses. My motto has been: "If Ellie can do it with grace and guts and humor, so can I", Have no doubt that you are leaving this transitory place immensely better. I will miss you to the depth of my soul, but my never ending faith tells me that you will be watching over all of us that love you. I, too, have been betrayed and abandoned at times by my family and friends and children--but I've come to the point of knowing that through betrayal, I have come to understand and cherish who I am and what really matters in the now. Gracie is trying her best to become a woman who can stand on her own two feet in the middle of tremendous grief--and like for all of us, it's impossible to get a do-over. Advice--very little, but becoming the greatest listener in the world will give her the love and freedom that she needs. I'll be waiting for your book--will David tell us how to get it? I'm just a tad bit JEALOUS of the Palais Royal apartment......as always, sending you love and prayers, joy and peace and a million thank you's for leading the way. And kisses and hugs--Mary
ReplyDeleteDear Ellie, There are no words that have not already been expressed by all your readers who love you. I wish you peace. Victoria
ReplyDeleteEllie, rest assured you HAVE left this world a better place.....just look at the comments of so many who care for you deeply. It makes me so sad to read of the heartache you are experiencing in your last days. You can take or leave what I'm about to say, but I just feel the need to share my experience. I have found the power of forgiveness to be the most freeing decision I can make. How do you want to live your last days? In anger? You are one of the bravest people I've ever known and, in my most humble opinion, forgiving others is one of the bravest things one can do. Not only does it free your heart in your remaining days, but when you are gone those who regret having hurt you can have some comfort in knowing you were peaceful before your exit. I may be really stepping out of bounds here, but I just felt the need to share my opinion....take it or leave it. All that being said, please know how loved you are and how missed you will be. Your words have been one of the highlights of each day for me. Thank you for sharing yourself so deeply with us all. I pray you will go in peace with God's arms wrapped tightly around you and around all who love you.
ReplyDeleteEllie, my sister Jane died five years ago after a 15 year battle with melanoma. We were raised on and off Bermuda, so skin cancer has been a bane of ours for quite some time. Because she married a man from another country, her kids lived all over. One in Italy and one in America. As the end approached, they both got so awful to her that we put her in a life flight plane and took her down here to Georgia to spend her last days with me here in our home. She only lasted two weeks after she got here. Meanwhile, her daughter was furious to lose her, heartbroken, angry with me and on and on. Her son, was so shitty that he didn't bother to attend her funeral. He later told me that I hadn't invited him to his own mother's funeral. Finally, in grief, he too committed suicide. Ellie, I tell you this because suicide is a lethal bomb that has unintended consequences for those left behind. My own grandmother was my guardian. As soon as I got to college, she called me home and asked if I could think of any reason she was alive. I laughed her off. She took her own life that weekend when I was at a football game with my new friends. I have never gotten over that. She had years of useful life left, and if I had handled things differently, she would have come to my wedding. You told us all that you would bow out when the going got too tough. I only ask you to reconsider that plan. Asking God to take you and letting him be the boss will leave David and Gracie with the knowledge that you did not choose to leave them. For some reason, knowing you lost your mom because she chose to leave you is much worse. Later on, five or even ten years from now, Gracie will begin to sort things out, miss you keenly and blame herself for what happened. I fully realize how hard staying is. ALS is a monster of a disease. But of all the folks I have known who suffered with it, your strong character has uniquely equipped you for what is to come. I only ask that you think it out very carefully and yes perhaps prayerfully before you act. I know it is easy for me to give you advice when I am not the one who is suffering. I only speak out of concern for Grace and David. I have seen the ripple effects from suicide. Think Ellie. God bless and many prayers coming your way.
ReplyDeleteThank you, Ellie, for sharing your life with us. Please accept my deep gratitude for this gift from you. Now,I have a gift for you. I have prayed that you will accept it. The Lord God I know is in complete control of your situation and He wants you to accept Him. Even with the pain surrounding you and all those in your life, He is working for good. THIS is His promise - not that we will understand it. Most times, we can't possibly grasp what He is doing. But my plea to you is that you will turn to Him and give Him your permission to be in charge. Ask Him to handle your pain of the disease and your pain with those in your life. All of them. Don't sap your strength with bitterness and revenge. Give all this to Him. Ask Him and then depend on Him to give you the very best words to say when words are needed. He will. The Lord Jesus Christ says that we are His treasures. Give Him the chance to show you what He means by this. It will be magnificent. You and I are cut from similar molds but every time I give it up, He does such a better job. Ask Him for the gift of His peace. He's waiting for you to turn to Him for all you need. He says to knock and the door will be opened. He opened it for me and He will for you. I ask His great blessings on all of you and that His unfathomable strength will be poured into your days.
ReplyDeleteIn admiration and gratitude, with bushels of hope,
Hattee Christian
PS Tell Gracie that out of all the people in the whole world you are so grateful that she, and NO ONE ELSE, is your daughter.
Dear Ellie, I send you peace and love from San Francisco. I will be in Paris in September and when I go to the gardens at Palais Royal I know that I will see you as an angel taking in a little sunshine or as the angel sending out rays of sunshine. Peace to Grace and David as well.
ReplyDeleteEllie: It is a beautiful sunny day here in Newport, Rhode Island. You are a brave girl and so well-loved. My thoughts and prayers are with you. Would you please ask Gracie if she would keep in touch with all of us? If she could just do an occasional follow up on your blog. We are all so worried about her. Perhaps all of your followers could help her through this painful time. You will be missed. Love, Stella.
ReplyDeleteOh dear God, it is so hard to hear this news, and I want you to know I love you, even tho we never have met. I have such a horrible empty feeling inside of me,just reading this. When I read the heading of the blog, my first thought was the worst, that Grace was giving us terrible news. As all the others have stated, you have made a gigantic impact on our lives, certainly on mine. You will be missed, and I can tell you with all honesty, you will always be remembered. Forever!!!!! I appreciate that you had the strength to bring us into your life, and let us follow you on your journey. What gave you the courage to do so,I don't know, but has told us of your "tough" strength, your humor, and your wonderful personality, and most of all, what a fine young woman and Mother you are. I wish you love and peace, you are an angel who has touched so many. Be proud..Bonnie in Wisconsin
ReplyDeleteLove and prayers, Ellie.
ReplyDeleteA faithful reader, Patricia
Dear Ellie, I wish I had something to say that has not already been expressed so well by previous posts. They are all so heartfelt. I worked for 8 years as a Church Secretary in a small church in Colorado. One of my most favorite church family members had ALS. I understand where you are because I watched him get to that point. You have more courage and have handled this illness with more dignity than anyone I know. I respect your decision and wish you peace with it. I look forward to your book and cherish this friendship with you. God Bless you dear Friend. Jill
ReplyDeleteI am sad. I am grateful. Your words have brought laughter, inspiration, hilarity. I love your singular voice and discerning taste. I love comparing notes with my Mom about your posts, over here in Minnesota. You have left an indelible mark on the world, and you won't be forgotten. I'll pray for your daughter and your dear husband who is really a good man. I will feel joy for your passage into freedom; into a place where you will stand tall, run, and where your spirit can soar. Your spirit, love, sass, class, sense of humor, wisdom and honesty will live on. Thank you for blessing us, Ellie. Meghan in Minnesota
ReplyDeleteAfter reading all the new comments..I check them often, I imagined all of us, your friends from all over the world, converging on paris and gathering outside your window looking up to you with candles in hand,honoring you...too much like a coke commercial?..anyway..imagine that.We're all outside that window..honoring you. We're all there forever. Xo nancy in texas
ReplyDeleteI wish you peace, all the love your heart can hold, continued strength and every moment of pleasure you can experience. You are truly amazing, and you have touched so many lives in a positive way. I am sorry that some close to you have behaved disappointingly; challenging situations can impair judgment. Caring hugs from Olivia.
ReplyDeleteEllie, you are a wonder - and since blunt is your vehicle, and a wise one in my opinion - Way to go, girl. Way to go.
ReplyDeleteDear Ellie, I have grown to love you with your funny self and ways. I will miss you very much. Your frankness, your passion and humor. My heart aches for your daughter. Just love her and keep telling her. You have really touched me in so many ways. I am forever grateful. Eat ALL the chocolate! Much love...
ReplyDeleteBeautiful Ellie, you will be missed terribly; by those close to you and complete strangers like me. I was trying to think of someone else, anyone else, I could say that about, and nothing comes to mind. All by itself, that’s a remarkable epitaph.
ReplyDeleteBut there’s so much more. God bless, Ellie. I believe there are amazing adventures ahead of you.
Dear Ellie,
ReplyDeleteI lost my Dad at 26 and my Mom when I was 29. My relationship with my parents was honest, rocky but full of love and love is all I remember. God bless you, Gracie and David. Thank you, you have enriched my life. Love and peace,
Susan
*How Great Thou Art...not though!damn autocorrect!xo nancy in texas
ReplyDeleteDearest Ellie, I came across your blog in what I thought was my darkest time of my life. You soon became my heroine and my troubles soon became pale in comparison to your everyday challenges. If you can find courage, strength and humor then so can I. It's hard to read todays post as like some many of your followers I am not ready to let go. I can't imagine what it would be like to put your affairs in order. I often find myself thinking about you and wonder why we never met, as we have so much in common. I use to think pain was when you scrape a knee. I had no idea what real pain really is until I too lost someone I loved. Live, love, laugh and enjoy the simple gifts in life. Praying for a miracle. I wish you peace.
ReplyDeleteDarling Ellie, I can't imagine a day without your courage strength.... I am so much better for knowing you, I am so much more courages and confident for reading your blog. You have definitely given all those around you something extraordinary. I have shed many tears over your trials and continue to pray for you David and Grace.... Much love to you all... Ana
ReplyDeleteDear Ellie - Your unflinching honesty is eminently challenging and somehow oddly comforting. Your deliberate steps up to - and perhaps one day over - the edge of life while embracing its luxuries (both high & low) is remarkable in its boldness and consciousness. Humbly I offer my small perspective. When life has brought me to my knees - laid flat out on the floor - full of hopelessness and wounded to the core. Sure nothing would ever be right again. In the midst of brokenness, I have reminded myself of Job and of course Jesus. Betrayed. Forsaken. And yet - I believe regardless of faith - we are promised an Easter Sunday following the horrors of a Good Friday. The transformation of death into life is eternal. Spring's beauty and lushness comes after Winter's darkness and decay. Love endures and triumphs.
ReplyDeleteSending along my prayers, admiration and gratitude. Dorothy
Dear Ellie, Gracie, David.
ReplyDeleteAll I can say:God bless you.
leso in Sweden
Dear Ellie: I thank you for all the laughter you gave to me through you blog. Be at peace with your decision, whatever you choose. You have touched many people, and that is your gift to all of us. Love and peace to David and Gracie, also. Love, Bev.
ReplyDeleteI was concerned that it was going to be time for you to make this decision. Thank God you aren't in the states. You'd have to move to Oregon just to have the right.
ReplyDeleteHere's something weird . . . I had been praying that you would find some place in Paris with a garden since Provence is out. I knew that was a tall order. Leave it to YOU to end up at the Garden of the Palais Royal!!!
I want to pass on a site that may bring you comfort as it does me. www.ChannelingErik.com. There is also a Channeling Erik channel on YouTube with videos.
This was started by a mother who was doctor in Houston. Her son killed himself a few years ago, and then he began to show up to family members. She started the blog to help her own healing, but it has turned into a community. She records videos with mediums and they talk to Erik about all sorts of interesting subjects and Erik sometimes pranks the blog members. Actually, he showed up at my house yesterday. Mainly though, he considers himself a guide who shows people how to live on earth. The mother, Elisa, has written two books, the second dictated by Erik via a medium on his life in Heaven. Oh, and he swears a lot, so as to keep it real.
By now you either think I'm crazy or you can't wait to investigate. ;)
Ellie - you started out as a stranger and through your blog posts, I discovered the most honest, beautiful, courageous and hysterical soul I could ever imagine!
ReplyDeleteI wish that G-D had a different plan for you because it's with a face filled with tears that I write to you and give you all my love, all the strength in the world and all the peace your heart desires!
You're leaving behind and legacy without even knowing it. Your daughter will grow and follow in your footsteps, as all kids become little rebels esp when facing tough times.
We, people from all over the world are with you and although I want to throw a little humor into this post, I just can't. It's just too deep, too real, too emotion and pain filled!
We love you and pray for you!
Thank you for letting us into your lives!
"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." - Maya Angelou (1928-)
ReplyDeleteEllie, it's clear from the comments thus far, that you have left an indelible impression on many...in your own, unique, stylish way. You have been bold and beautiful, dynamic and colorful. May your exit to the next plane of existence be the same. We all know you will be adding a great dash of needed spice wherever that is. Go with flair and may love be your legacy to those closest to you. Cheers, Ardith
wow, your fans have covered it all, I have read them all too.....I know when I couldn't process scary, fearful, the unknown, loss of my mom & dad I was acting out of my mind trying to cope...I am sure of that.....how my mom handled all this while she was here she deserves a carpet ride of glory forever....I love ya Ellie....too late for me, cried on each reading here, I want to fly there....I will and I can, anything to help you, David, Gracie, your caretakers, be a courier, whatever you need......XOXOXOXO
ReplyDeletePraying for you, Ellie, that you and all those dearest to your heart will have some good time together yet and peace at the last.
ReplyDeleteEllie, it's the last inning, focus on Grace, Love, Understanding, Acceptance and Forgiveness. Don't let those on the sidelines cause you to take your eyes off those important lessons that we've all come to earth to learn....we are forever spiritually connected with those close to us and we play roles for one another in order to grow from the many experiences, good and bad. With Love.
ReplyDeleteHi dear Ellie, I couldn't agree more with all these beautiful heartfelt comments. I wrote you a long email but wanted to follow up with a short comment. I very much want to buy and will treasure your book. I wonder if you could make a book # 2 out of all your blogs? And I noticed on a previous blog the comment from and link to Bo Landin's documentary on ALS and Alzheimer's which so far included a wonderful couple clips of you and David! It was lovely to ''see and hear'' you and I would very much like to see that film when it's done. Would that be through you?
ReplyDeleteAnd you're right....that was one hot French guy!! I knew I needed a better view from my apartment. David's hotter though of course!! :) Love B. XXOO
Ellie I hope you’re proud of all you’ve accomplished “with your one wild and precious life”. There is nothing prosaic about you. From your first blog mission statement, “I’m good at sourcing cool stuff”, you went on to make it a reality. Your spirit is unrelenting. Yes, you may “worry about everything” but still you’re fearless. To me, you epitomize what the French novelist Emile Zola meant when he said, “If you ask me what I came into this life to do, I will tell you: I came to live out loud.”
ReplyDeleteI love seeing the world through your eyes and if I imagine myself in your shoes (blue cashmere socks) right now, I can almost smell the Muscs Koublai Khan wafting through the air like another layer of warrior spirit. You once said you wanted to “Come back as a landscape architect and a perfumer…Eleanor O. Decret-The Nose” – I guess you’re in the right place ;) Love always XOX p.s Can you see the Tres Confidentiel from your room with a view?
Saving the Zola quote - perfect! BTW any chance you are in Potomac MD? If yes - would love to meet for coffee in DC area sometime.
DeleteHi Ellie, I am a friend of Heather's. I have not written you here before, but today I am writing you as a daughter who lost her mother at an early age. Because of you, Grace is grounded in what it means to live life to the fullest with grace and courage. I hope you will be able to say what you need to say to her, even if she doesn't seem to be listening -- she is. And she will remember it all. The other thing is, and I hope I'm not overstepping, but it must be said, your husband really will have to be two parents to Grace from now on. Motherless daughters (again, sorry, but you seem to appreciate honesty) need their fathers to be extraordinary.
ReplyDeleteDear Ellie, I am late to the party. But as in life, Blogland has brought me to your blog and I look forward to reading your story in retrospect. The messages here are a testament to how you have touched people's lives. My thoughts and prayers are with you and your daughter.
ReplyDeleteGracie must be so angry. I would be too if I was going to lose mum, especially one with such a large spirit as you. She doesn’t know how to direct her feelings. Who would? Likewise your feelings must he super heightened too. Life is such a mess at times. I know the feeling of being let down by people when you can’t afford to be and it sucks and hurts. Be assured though Ellie, that they wouldn’t be meaning it. They’re just don’t understand. Sending you love and admiration. xxx
ReplyDeleteAs I go back and read this post - over and over again - I realize I didn't give enough attention to that sentence
ReplyDelete"Don't start crying yet, this could take a few months. I still have some work to do."
You tell us you have enough strength to finish your book - fucking fabulous! So that means you will post again! And maybe again! There is joy in that. I'm clapping my hands like a fucking idiot and looking forward to more words. You've more to tell, I know you do.
Have a glass of champagne, you'll feel better xx
We are headed to Paris in less than a week. it will be my ninth trip. One place that is on my list thatt I have yet to see are the gardens of Palais Royal. I hope that at that time you are at peace....where ever you may be. I am going to bow my head and say a prayer of thanks for having gotten to know you over the last two years. you are cute, feisty, smart and have a gift of expressing yourself. Godspeed Ms. Ellie. With all of the comments above you hopefully are feeling the love, janey
ReplyDeleteDearest Ellie, hope you find some peace and feel the love. Know many are thinking of you. xxx lillian
ReplyDeleteEllie, I am so glad I found you through Yolanda several years ago. I have so loved your blogs and your blunt and spot on comments about your disease, your life, family, friends and idiots. You are such an inspiration to so many and your light and spirit will live on in everyone you've touched....and most importantly, your Gracie. She's so angry and has no other way to express that than by hurting you. If she makes a big enough fuss, then maybe you won't go. Maybe you'll fight hard enough to stick around and ground her. Bless her heart and bless you and your David. We've all got your back and will continue to fight any battles left for you. We'll encourage Grace through social media, we'll fight for a cure for stupid ALS and we'll make sure that none of our friends decorate with cheap and ugly blue and white porcelain vases. We all love you and wish for a miracle for you but we are ready to let you go when it's your time. Love and prayers...Anna
ReplyDeleteDEAR ELLIE, WRITE A LETTER TO GRACIE AND GIVE IT TO DAVID. WHEN YOU ARE GONE, SHE WILL FEEL TERRIBLY ABOUT HOW SHE BEHAVED TOWARDS YOU. LET HER KNOW THAT YOU FORGIVE HER, UNDERSTAND AND WILL ALWAYS LOVE HER. YOU MAY HAVE ALREADY DONE THIS BUT IT COULD BE ONE OF YOUR FINAL GIFTS TO HER. MAY YOU GO WITH PEACE ELLIE, KNOWING THAT YOUR LIFE REALLY MATTERED. XXX ROSEMARY
ReplyDeleteYes, please do this, Ellie. It will be your final gift to Gracie and will mean everything to her in her future. And I hope your family members that have betrayed you will make amends to you!
DeleteSending you love and peace. And as always you are in my prayers. You are an amazing person! I have learned so much from you and your brave battle with ALS...
DeleteAll my love,
Lily
I was directed here by the incredible blogger, Dani. I feel awkward writing, but I feel that I must. My friend's wife took the ALS journey as well and I supported him with nightly phone calls for the last year. It sounds as though you are as grounded and brave as she was. She was so in love with my friend that she simply did not wish to leave this earth.
ReplyDeleteOddly I am writing to recommend a book that you may have already had the pleasure of reading, it is When Breath Becomes Air. I felt that I had to overcome my own discomfort in writing to someone I do not know to tell you about this book that was written by a person with everything to live for who was ironically handed an expiration date just as he was reaching his personal, professional pinnacle. At his request the writing of the book was finished by his wife. It is the wife who is the best friend of a colleague's daughter. I hope will take a look at it and I hope that it brings a welcome examination of your life to you. Should you choose to read the book, please consider listening to his wife's discussions-you will find the links at paulkalanithi.com
I have also been reading all of Oliver Sack's writings and I find that his humanistic ruminations about neurological processes gone awry is very gentle and soothing.
I feel compelled to read all of your blog and shall do so.
Should you need a faraway, far flung, anonymous shoulder-I have been told I am a good listener. Feel free to reach out.
Laugh as much as possible. It is the best medicine.
Dear Ellie
ReplyDeleteThank you for thinking of us your blog followers at this difficult time by keeping us updated. You are inspirational to me as you are to Gracie. Your strength , love , determination will remain with her. Peace and blessings to you and your family at this time.
Mary Sue
Hi - I wrote yesterday but one more thought. Please read this poem- Gone From My Sight. As a daughter it is so comforting to me. Hugs
ReplyDeleteEllie, I don't know if you remember delivering so graciously the "chaise longues" I bought at your sale at your mother's house..... You said to me: "I wish I had met you before I was leaving here for France! You are one of the nicest people I have ever met here!!" I have never forgotten it; it was such a compliment; and yet it hurt me so that other people had been anything but kind to such a lovely, blithe, and beautiful spirit like you! Then, years later, here is your blog, and your comments on my blog......I am such a lucky duck to have seen your beautiful store; and met you in Montecito!
ReplyDeleteI feel so lucky to have actually met you; and then discovered this incredible blog about your incredible journey.
You have touched and helped more people than you can possibly imagine!
I love you, Ellie......truly. With all my heart.
Penny
Ellie, I feel my comments so very superfluous, having read all of the comments before mine, because most of them express each and every feeling I'm having myself about you. Like many others, you don't know me personally, yet through your blog I've begun to know you in all your wonderful iterations. You've given voice to what all of your avid blog followers feel and have learned, or are beginning to learn, to finally express...and not just feeling finally free to use that wonderful word, "fuck," which is so ultimately, sometimes so perversely, and yummily descriptive of all things awful and wonderful, dependent on context. I last read your sister's post writing for you advising "all of your blog family," of your dire straits. I, for one, when I saw "Have Some Decorum" in my e-mail hoped it was actually from you, dear Ellie. Disappointed it wasn't, yet glad to know what was happening with you. Then our Internet went out soon after and I was beside myself about hearing of your condition...a turn for the better I wanted!!! Tonight, my Internet back, I saw "Have Some Decorum" and was initially excited, then immediately afraid to open the e-mail. I wished only that the e-mail had been written by you (wish granted), and that some miracle had occurred for you and for all of us who know you in person, and for those of us who only know you through your blog, while I was out of touch via the Internet. Ellie you're still here,(wish granted) thankfully, selfishly, but you would know about those feelings as well as anyone. Selfishly, I don't want you to go. "Do Not Go Gentle into that Good Night" Dylan Thomas. I want you to stay, if not forever, until you reach whatever is now considered old age, as the fortunate ones do, because it would, otherwise, be a travesty. Having said that, dear Ellie, death to a young person is always a travesty. I lost my eldest child, my son, Scott, to a motorcycle accident when he was just 21 years old. A travesty, yet he was responsible because he'd been drinking and attempted to pass in a no passing zone, hit a truck making a left-hand turn, and lost his life as a result of being young and to himself, at least, seemingly invincible. He'd made a big mistake, but I'd done much the same at his age, but got away free without having to pay the ultimate price for my bad decisions. Why had he? Then, there's you, Ellie, who've done nothing at all to bring ALS into your life. Why have you been made to suffer so undeservedly...and your daughter and David as well? To quote you, dear heart, "What the Fuck?" You, of course, will choose the time when you will escape these earthly bounds, BUT, please don't leave all of those who know and love you, and even those of us who know you only through "Have Some Decorum," and have grown to love you as though you were one of our very BFFs, until you absolutely must, hopefully, in no less than five, 10 or 20 years from now. Please don't leave before you absolutely decide you must.
ReplyDeleteEllie, I don't even know you in real life, but your circumstances are breaking my heart.
Patricia Wilson
Columbia, CT
Dearest Ellie,
ReplyDeleteThere's so much I have wanted to share with you since discovering your blog. While savoring your linguistic artistry and the visual feasts you so lovingly curate for us, I have lingered over every post. I have read them from beginning to end, including almost all the comments. This message, my first to you, is my heartfelt Homage to Ellie. Of course these are my personal thoughts, but I believe they capture the zeitgeist of your international fan club so I use the royal "we." And yes, of course you must show this to David because it will be a veritable fireworks display of love and affection for you.
As you yourself have noted in your posts, it's all about juxtaposition. It's your unique expression of those intersections and complementary relationships of the high and the low in design and the highs and the lows in life that sparks the, here's a new word I've coined just for you, dear Ellie, the "thememagic" of Have Some Decorum. The juxtapositions you create often take our breath away as their stunning power reveals so much more than the subjects alone could ever command. It's what sets your blog apart from the hundreds of other design/France blogs, as lovely as they may be.
Post after post, you make that "thememagic" happen for your cadre of devoted readers, your loyal friends both old and new. As you effortlessly weave language, syntax, imagery and the stark details of your harsh realities, you transport us to realms of pure, honest, naked emotion. You lead us on magical mystery tours, the most fantastic journeys that each begin, climax and resolve, all within a single post.
We hold tight to you as we ride the wild roller coaster together, intrepid travelers one and all. We are mesmerized by your intelligence and how naturally you juxtapose the beautiful, the silly, the light-hearted against the irreverent, the profound and the dramatic, raw and heart-breaking aspects of your real life. Your integrity and authenticity, coupled with your audacious humor, not only touch but often wrench our hearts and souls. So intimately do you draw us in that we fall in love with you over and over and over again each time we travel by your side.
We share your passion for beauty, design, decor, details, language, a good story, good food and drink, entertaining, travel, flowers, gardens, art, artistry, the elegant, the quirky and everything about enhancing and elevating the daily details of life and living. We are drawn to your sophistication, worldliness, and the antics and generosities of your celebrity friends and playmates. We romp along as you regale us with highlights about your adventures, hi-jinks and opportunities, which you so generously pepper with anecdotes about the charm and eccentricities of your family and friends. Because of all this, we can't help but revel in your opinions, analyses, classifications, and pointed lists of dos and don'ts. We laugh along with your faithful readers who are full of "oh mys" when they realize they've broken what they perceive as one of your cardinal rules. Although I imagine that you would be the first to exclaim that rules are meant to be broken! And there's more, to be continued in the next post...
Dearest Ellie,
ReplyDeleteHere is Part 2. I've realized that it is now or never to continue my Homage to Ellie!
We love to love along with you, cherishing your absolutely radiant love for your Gracie, your deep, loving and complex relationship with David, made more so by the challenges of ALS --- even the shouting and f-you's somehow seem appropriately placed in the arc of each demanding day. And most poignantly, we adore your irrepressible love of life.
Yes, we love you for all that and more. Your unflinching reports from the trenches have the power to jolt us to our senses every day. Your fearless baring of your soul heightens our self awareness and willingness to face our own challenges, some quite excruciating, with greater equanimity. We hear the truths you speak because we know that you do not suffer fools gladly, nor do you have the patience, the temperament or the time to pussyfoot around. My dear Ellie, you are, indisputably, a "balls to the wall" woman, unafraid to call it exactly as you see it. And all that while wrapped in cashmere accented by a tasteful touch of leopard, monograms, carefully straightened socks and, perhaps, your orange loafers.
Post after post you leave your calling card. The scent of your Koublai Khan perfume lingers in our minds and hearts long after you've swept through our digital rooms. For all whose lives you've touched, I can say without a doubt that you have irrevocably changed us one and all. You have profoundly moved us and called upon us to become better versions of ourselves. Your spirit lives within us, not only as we face our own trials and travails, but also as we embrace the joys and delights, both large and small, that grace our days. You are woven into the fabric of our lives and have made your presence known and felt as no "officially anointed" celebrity ever could. Thank you for sharing so much of yourself with us.
XOXOXO
Joanna from Maryland
"Be still and know that I am God." You and Gracie and David and those betrayers are all loved unconditionally totally and without any limitations. How wonderful that we aren't in control of much.....Yes? Too often I forget that I don't have to run the show....although I often try. Wishing you peace and serenity.....and some stillness in the midst of the thorns.
ReplyDeleteDearest Ellie, Thank you for including us in your life. Becky Burgess
ReplyDeleteBlessings, dearest Ellie. I admire you tremendously. I pray for you to feel peace in the days ahead. We are all so deeply imperfect. It helps me to pray for those who have hurt me and to pray for discernment in those relationships, including whether to continue them. I pray for you to discern what is best for your spirit. You have been an enormous inspiration to me and to so many. I am confident Gracie will be fine, she has your tough, beautiful spirit. I, and I am sure many others, are also praying for both Gracie and David in the difficult das ahead. Thank you for all you have given your readers, the gift of your uniquely beautiful and courageous voice. Whatever your decisions in the time ahead, know how much you are loved and how much you will be missed. You have given the world the gift of your inner and outer beauty. Andrea
ReplyDeleteYou have been an inspiration to me dealing with my own degenerative neurological condition. You have made the world a better place. You have brought tears and laughter to so many. My heart breaks for you and Grace and David. Sending love and prayers from Seattle.
ReplyDeletesending you my prayers, and wishing you love and light...
ReplyDeleteSending you strength. My uncle passed away from ALS and my mom (his sister) and he were not on good terms at the end. 10 years later and she regrets never making things right. I hope your family can find the strength to correct their wrongs before you leave this earth because then it truly is too too late. Thank you for sharing your brave journey with us.
ReplyDeleteI will be in Paris in June. I will stop by the Palais Royale first thing. I will be the crazy brunette blowing kisses all around to one of the best friends I've never known. I hope you see me from your window.
ReplyDeleteGod bless and keep you.
Dearest Ellie ... Meine liebe (my love as we say in Germany)
ReplyDeleteAll I can say is thank you ... Thanks for your blog and sharing your life with us
I celebrate you as a person who is still with us and will be with us . I send you so much love and blessings to you .
Love to you always
Samantha
she is scared ellie.
ReplyDeleteI lost my mother when I was young to cancer.
she was my best friend.
I went through a period that I was angry she was leaving me. only I didn't know I was angry about that at the time.
but I know now that it was sheer fear knowing I would no longer have her.
thankfully I got over it in enough time to not make her last days ones of bad memories I would then have to live with the rest of my life. hopefully that will happen for you and grace.
it will be a new adventure coming ellie. your spirit is up to the journey! and you'll be free of all that is wrong now. God speed! XOXO♥
Looks like bocce ball? I thought you and David still had your apt. in Paris for some reason. Very pretty view. I can't comment on Instagram 'cause I'm a luddite without a smart phone. Apparently.
ReplyDeleteHugs.
Ellie,
ReplyDeleteThis is my first post. Sending love and prayers and praying for a miracle.
You are wonderful and so talented.
Thinking of you in West Hartford Connecticut
Ellie,
ReplyDeleteMy admiration and respect for you knows no bounds. You have been on my mind every day, hoping for the best. By that I mean whatever is best, first and foremost for you, and then also David and Gracie. Like so many of your devoted readers, I am in debt to you for the courage you inspire in me to persevere in difficult situations, to laugh and enjoy the hell out of life's little absurdities, take nothing for granted and be ever so grateful for all the good in life. And always to try to do so stylishly, with decorum : ) Sending you so much love, xoxo Catherine
I have read this post (and all of the comments) over and over again. It is heart-breaking. I struggle with what to say - or even think. Why do some people do the things they do? I don't suppose I will ever understand it. I cannot imagine what you are dealing with and I cannot imagine not having your words on this blog as a source of strength, wit, nerve, courage... I will treasure your book ALWAYS and am looking forward to its release. Lots of LOVE to you, Ellie. You are my inspiration. Thank you.
ReplyDeletexoxo,
Michelle from Santa Barbara
HIi Hi, thought I'd stop by again ~ Saturday Night, thinking of YOU Ellie! :-))))
ReplyDeleteRoom with A View.....awww
Dear sweet Ellie..this blog is to be cherished...as you are by all who have been touched by your words and life.
ReplyDeleteNo words of comfort can ever be shared that you have not heard...I add my sincere awe at knowing such an amazing woman as you!
Laughing, Crying, Cursing all the way to Heaven...what a way to go!! I plan on following suit....when the time comes.
Peace be with you and yours.
Good morning, Ellie. Thinking of you in MS. Hats off to Intrepid Traveler for so beautifully and eloquently summing up what sharing your journey means to us, your fellow travelers. Peace and blessings, sweet friend.
ReplyDeleteThanks for letting me follow along with you, It's been a blast. Really. I know that sound weird under the circumstances but I'LL never get to Paris, I'LL never meet you or live half the life your lived, so thanks for everything. Maybe we will meet some day on the other side.
ReplyDeleteAnd thanks to Janet from The gardeners cottage for turning me on to your blog. Damn I'm going to really miss you, this is so weird that I feel this way,
Dear Ellie
ReplyDeleteIt's wonderful that you're able to spend the last part of your life in such a beautiful place. Wonderful too to have such kind and thoughtful friends.
Sad though to hear you and some of your nearest and dearest are struggling in your relationships just now. It must be so hard for all those who love you to come to terms with losing you. They've probably begun the grieving process early and are going through denial and anger in advance.
Despite all you're suffering, try to forgive them. Some of your blog followers have made such good suggestions about writing letters to your daughter to be read later. If you have the strength it doesn't have to be just one. You could write (or dictate for your husband or a friend to write) birthday cards/notes as well for the future. Just so she feels your love surrounding her even though you're no longer physically there. I've lost my grandparents, father (when I was a teenager), my mother and my older son. Also three good friends and other wonderful close relatives. There are huge holes in my heart that will never go away. But I feel their love even now, years after their deaths. Sometimes when the plants they gave me flower, or I make my mother's recipes, or use things that belonged to them, or read their letters and cards. Your daughter will have so many wonderful memories of you, including how brave and feisty you've been in dealing with ALS. I love that you've still managed to hold onto your sense of humour in spite of all. I can see you looking out at the trees, the rose gardens and the fountain, surrounded by scented candles with glasses of good wine and chocs. Beautiful music playing. I know there are many bad things you're not telling us about - but focusing as much as possible on the good and the beautiful and praying makes it a little easier to bear, for yourself and for your loved ones. Towards the end of her life when she was so ill and frail my mother asked me to pray for her to die. It's very hard when you reach this stage. I pray for you Ellie and for your loved ones. Pammie