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Heart.Broken.


 

Sometimes ALS wins. Sometimes you just can’t fight it. Sometimes you let it win. However, there are no winners. Everyone loses.

My friend, Carol, lost her battle with ALS Friday morning. Actually, she let it win. She was ready to go. That’s the funny thing about this disease…you can fight and fight and fight, and you can try and try and try, and you can pray pray and pray…but at some point you reach a breaking point. Carol reached her breaking point and decided to end of her own life.

I’m not going to sugarcoat this and try to find some great moral to this story because there isn’t any. I am not going to sugarcoat this and tell you that she died peacefully in her sleep because she didn’t. I am heartbroken. I am sad, I am devastated, I am furious and I am scared and don’t be alarmed but I’m jealous of her. Her suffering is over. When I received the email informing me of her passing, I burst out crying and screamed out loud, “I’m so happy for Carol!” I meant that with all of my heart. I am so happy that she is where she wants to be… Out of her body. I’m going to tell you a little story that I was saving for my book but I think it’s appropriate to tell you now. The very first day that I was diagnosed with ALS, I was in my apartment in New York… By myself. I was sitting on the daybed in the living room. I think it’s important to note that it was a 17th century Russian daybed. :-) I was just sitting there looking out of my window at the trees and I could feel myself squirming. Squirming, squirming, squirming. I thought to myself, “Ellie, what are you doing?” The squirming continued for a few minutes until I finally realized what I was doing… I was trying to get out of my own body. My body was on the daybed but I wanted to be in the other corner of the apartment… Far away from that girl who has ALS. I was physically trying to escape myself. After about three minutes, I realized, “Ellie, no matter how much you try, no matter what you do, you are stuck, you are stuck in a body that is going to fail you and there is nothing you can do about it so you better just start dealing with it… Right this second.” So that’s what I did. I knew that the only way out of my body was death that’s why I’m jealous of Carol… She is out of her body, her body that betrayed her. This story gets uglier so you might want to stop reading if this sort of thing “affects you.”

Don’t get me wrong… Suicide is a very touchy subject for me. As you know, or maybe you don’t know, my brother killed himself two years ago. He reached his breaking point. Before my brother’s death, I would never consider suicide an option but after I saw my brother suffering so immensely… I understood his actions… I’m not sure if I condone what he did (he left four children and his awesome sister)… But I understand.

Carol is my first friend with ALS. I have never allowed myself to communicate before with anyone who had ALS. I went to one support group in Santa Barbara and left during the meeting and never went back. One of the members of the “ALS Club” as I called it, called me on the telephone. His name was Jake. He was young, handsome, a doctor with two children and a wife. He brought his dog to the ALS meeting. I would not take his call. I wasn’t ready to have a friend with ALS. My loss because he died a month later. I think he was in his 30s. I don’t know what made me correspond with Carol. I guess I was just ready to. Carol could never adjust to her life with ALS. Somehow, I have. When I first met Carol, I didn’t really like her. Her emails to me were very depressing and I had to fight to stay positive. I thought that she wasn’t trying very hard to enjoy her life. Carol had an apartment in Paris and I begged her to come here. She refused. She saw no joy in coming to Paris again. She saw no joy at all. I tried so hard to keep her spirits up, to show her by example that life could be okay with ALS. She wasn’t having it. And, after I got to know her, I understood her and I grew to love her. We had a very, very special bond. I decided to just cut the crap with my positive stupid attitude, and talk to her for real. It was fucking liberating. Only someone who has ALS understands exactly what this disease does to a person. It is not easy talking to people who don’t have ALS about our feelings. You know why? Because it’s too scary for the other person to handle. It’s too much! Whenever someone asks me how I am, I respond, “Good, thank you.” I only tell my very close friends the truth. The truth is that sometimes I want to give up, the truth is that sometimes I hate the world, the truth is that sometimes I just want to die already. You can’t just say this to regular people but Carol and I could say it to each other. Our conversations were excruciatingly sad, heart breaking sad, and very very raw. I kept thinking to myself, “I’m not equipped to have these conversations. I’m not mature enough.” I’ve never had these types of conversations with anyone else….Not my husband, not my family and not my very best friends.

I knew that Carol was going to end her life in November. It was extremely difficult to keep this secret. I wanted to talk to somebody about it, but I couldn’t, because I promised Carol I would keep her secret until it was over. She didn’t want her family to know. She only told her five closest friends. She didn’t even tell her husband because apparently he was a douche bag. It was weighing very heavy on my heart. I felt like I was leading a double life for the last month. Cheerful Ellie and Sad Ellie. Carol and I kept in contact from the beginning of her journey out of this world. Carol decided to just stop eating and drinking. I suggested that she call Dignitas in Switzerland. Dignitas is an organization that helps you end your life with dignity… On your own terms. I am a member. Okay, okay, relax… Walk a day in my shoes and you would join Dignitas as well. Carol did not want to travel to Switzerland… She wanted to pass away in her own home in New York. Because our country is so fucked up, assisted suicide is illegal in America except for two states… So Carol had to suffer, suffer, suffer for two weeks until her body finally succumbed yesterday. She emailed me daily updates about the whole ordeal. Here’s the funny thing, the only liquid Carol allowed herself those two weeks was vodka and the only food Carol allowed herself those two weeks was dark chocolate. She emailed me funny things every day… I could tell she was getting loopy. I told her that if that’s the way she was going out… Then bravo!

Before you judge, first of all, fuck off, and then secondly… Just think about it for 10 minutes. Imagine what ALS does to you. Slowly but surely your body dies yet your mind is as sharp as ever to watch the whole show. You lose the use of your legs, you lose the use of your arms, you cannot swallow, you cannot breathe and you cannot help yourself. Your family has to see you suffer. Children lose parents. Husbands lose wives. You lose yourself. The old Ellie is a distant memory. She is gone. Gone without a funeral. This new Ellie is trying as best she can but, like Carol, sometimes you just have to give up and say, “Uncle.” I’m not quite there yet but believe me, I will get there. There is only so much suffering a person can take for so long. There is only so much suffering a family can take for so long. People with ALS have already lost all of their dignity so to be able to die on your own terms is liberating.

I have been crying since Friday. Yesterday, my husband decided to take me out to get some fresh air and tried to cheer me up. Not happening. I was a bitch the entire day. Normally I’m halfway nice but today it just hit me like a ton of bricks that I hate the world. My husband decided to take me to Gallerie Lafayette, the biggest most glorious department store on earth. I could not have been more miserable so I decided to take it out on everyone who was at Gallerie Lafayette enjoying their holiday shopping. It started when we got in the elevator and 500 billion people tried to pile in at once. Normally, I would have quietly freaked out and had a panic attack. Not today. I said, out loud,” Stop crowding the elevator! We’re not in fucking China!” Then I told two people that they should use the stairs because they were lucky enough to walk. Then, I sort of quietly (so my husband wouldn’t hear me) told the mother who was cramming her stupid baby’s stroller onto the elevator to fuck off. Then I’m pretty sure that I said I hate all Chinese tourists because they have no concept of personal space. I know, I know, totally rude and prejudice but I only meant it for about five seconds. Gallerie Lafayette was not the place for me today. I should have been in a church or at the very least a garden. I was just so mad today. I was so mad that Carol died, that she had to suffer. I am so mad that I have ALS, that my daughter has to suffer. I am so mad that I am so helpless and that this disease has ravaged my body no matter how hard I’ve tried to stop it. This is why I’m jealous of Carol. I’m jealous that Carol is in a better place today. Carol did not believe in God but I told her I would believe for her. So today, I believe that she is in heaven…free of ALS. I was laughing today thinking that when God took Carol yesterday, Carol had to look God in the eyes and say, “Well shit, Ellie was right, you are real.”

Carol and I made a pact. She promised me, promised me, that after she passed away she would give me a sign that she is okay… We decided that the sign would be La Vie en Rose, the song sung by Edith Piaf, Carol’s favorite song. I have been waiting all day for the sign… I know I’m going to be excited when I hear that song unexpectedly but I also know that is going to scare the shit out of me. :-) If you want to depress yourself in a good way, click here to listen to Edith Piaf sing La Vie en Rose. If you want to cheer yourself up and dance around the room, click here to listen to Grace Jones sing La Vie en Rose.

So let’s see, do I have any morals to this story. Not really… just be happy you don’t have ALS.

Thank you Marc and Tom for introducing me to Carol. I am a better person for knowing her.

That’s my story today. I hate everyone except Carol. The end. Love, Ellie.

70 comments:

  1. My cousin Augie Nieto has ALS also you may want to connect with him. Blessings, prayers and consciences for your loss of Carol. Annette Covert

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  2. Dear Carol... I am so sorry for your loss. I am also sorry for the battle you face every minute of the day. I just found your blog this week through Yolanda's instagram. I'm not a rich and famous Real Housewife although I am guilty of watching all the shows. I've spent close to an hour perusing your posts. I love your writing - your humor and honesty. My best friend has PLS - a sub group of ALS. It seems like these horrible diseases find the sweetest people. Again my condolensces. Sorry for my spelling. I will definitely be back.

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  3. I am pretty sure I would do as Carol did....knowing what a horrible disease ALS is. I mean how long can you endure? You have every right to be jealous......I'm sad for you Losing your friend, someone who totally understood you, and even though it will be scary....I hope you get "your sign" soon.

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  4. I am sending you so much Love. And I certainly am not judging you. Just sending you Love.

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  5. Brutally honest and I can't imagine one person not totally agreeing with every single word.
    I am very sorry that you lost a friend and confidant. I am very sorry that Carol lost her will to live and had to suffer in such an inhumane way. I am very happy that in the end she was able to stop the suffering in the only way she had left.
    God bless you, I hope today gets a little better for you than yesterday and tomorrow even better.

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  6. Dear Ellie
    I am so sorry for your loss. I wish our country would afford people the right to die with dignity, Carol should not have had to suffer the way she did.
    You have every right to be angry, I am angry for you and with you. Good people should not have to endure what you endure. I also believe that acceptance is very important and you make the best of your situation and by doing so enlighten all of us.
    Ellie even though we haven't met I love you and I love what you bring to my life through your blog.
    I am truly sorry
    Lourdes

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  7. The power and courage of your truth told truthfully. May you receive some peace of mind and peace of heart in this telling.

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  8. Very heavy, but very powerful!
    Love the ending...
    I think of you often and pray for your continued strength.
    You are an inspiration. And when you break free of your body, you will be in Paradise. I have no doubt about it.
    Much love to you today...

    Therese

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  9. Fuck ya! Finally someone who tells it like it is.... I had a moment just like this the other day!
    I love this blog and I hate everyone too...
    The end xo

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  10. Your writing delves into beauty and ugliness… joy and despair. You write your own truth and for that alone, you are brave! I pray for your continued bravery to carry all your loved ones.

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  11. Bravo - the best thing I have read in a long time. I'm glad I don't have ALS and I'm glad you are teaching me how painful and personally terrible it is. Your friend was brave but you still have a lot to do I'm afraid. I look forward to every post you write - the good, the bad and the truly ugly (ugly as in Orange County where I live :)) Thanks for classing up the world and you are right about the fucking Chinese tourists spacial issues - God will understand!

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    1. Oh my God, I love Orange County! Corona del Mar, Balboa Island, Lido Island, Newport Coast, Laguna Beach! I love it there. Maybe not Costa Mesa. Glad you like the blog! XOXO

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  12. yup...this is sad. ALS is terrible. None of us can know what this is really like. i thought geez after reading that what to do now...went to your pinterest page and saw lots of happiness...hope you feel a bit better tomorrow ...so sorry.

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  13. Dude, I might off myself if I had the cruel misfortune to get ALS, too. I'd be mad as hell if I had ALS and I'd be super, super pissed off if one of the only people on the planet who understood what I was going through checked out. Anybody who can't understand, or at least respect, your rage, doesn't have much imagination or empathy.

    I don't know if I believe in heaven, but for your sake and Carol's sake, I hope it exists and she's running a fucking marathon right now. And stopping to pee without anyone helping her.

    I'm really mad that medical science can't do better with this disease than it has. Fuck you, doctors and scientists and other smart people. Work harder.

    Ellie, I'm very sorry all of this is happening, and I hope Carol gets in touch real soon.

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  14. 17th Century DAY BED.............a VERY important detail of this story!I hope you hung on to that!What a heavy secret YOU carried...................I Applaud YOU.You have every right to feel BITCHY.............I understand.I hope by sharing this with US your DEVOTED READERS WE will HELP you to love a few of us at least in a week or two..............WE ARE HERE FOR YOU.I know I AM ANYWAY.
    I adore that song too..............will be listening for it from this day forward.Give her time to get settled and I'm certain she will let you know she met HIM and she made it!!!XOXOXO

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  15. Life is cruel. Life is not fair. There are no answers. I wish there was. May Carol rest in peace.

    My deepest sympathy to you in the loss of your friend Carol. Thank you for sharing. My thoughts are with you. Susan

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  16. Dear Ellie. It might take a little longer to hear from Carol than you expect but hang in there. My mother died in February 2010 and I did not receive the "sign" until the following October. I would like to add if I had not been in a receptive mode, I might have missed it completely. You are an extraordinary person- an "old soul"- your spirit is an inspiration. Please don't stop talking to us. Love, Mimi

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  17. Carol is probably hanging with Edith Piaf by now and they are talking about doing a new show, for sure. And Matt is helping to produce it....of course! You got the picture....just think about the three of them! What a riot!

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  18. I think about you and everyone else with ALS every day, and not only for 10 seconds. I cannot imagine what you and your family must experience every day and every night.

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  19. You are a great writer-- truth and beauty in your words. I'm so sorry Carol is gone, but glad that she had a friend in you who could tell us who she was. And absolutely no judgement from me-- just love, good thoughts and prayers from a stranger.

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  20. B L O W N A W A Y. I think you are awesome. J

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  21. Ellie, I wouldn't consider offering so pithy pep talk or writing some silly platitude. Clearly anyone with ALS has been ripped off. However I will say that your attitude and humour are inspiring and have helped me, entertained me and I look forward to you blog everyday. Please keep fighting!

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  22. Thank you for not sparing us. I'm glad we have your voice.
    And, the much anticipated sale at Net-a-Porter...not nearly as interesting as your blog today.
    Sending love and well, more love.

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  23. Vodka. Chocolate. Lunch is for wimps.

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  24. Dearest Ellie,
    you are such a gorgeous soul who has so much to share. You've changed people's lives and given and brought so much to many. I am so sorry for the loss of your dear friend and the burden that you carried for the last month. I'm sure Carol is having a joyous time,I also think she will find other ways to come to you. Call on her spirit for support and I'm sure you will feel her. I love your blog, as many others do. I hope that the love from all of us supports you in some way. I wish I could take away some of your pain....maybe send a bit out to each of us. Sending you lots and lots of love,Katrina xxx

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  25. hiya Ellie, I'm with you all the way, this hit me personally from experience, and when I was hopeless my mom would say give it another day, or 2, etc., I would get "so mad" at her and say noone understands, you don't get it! i gave it time, and as strong mom was, she was correcto again, as I grit my teeth, but what a brutal time to overcome. What a song La Vie en Rose, I adore that song, and then you throw in the 17th Century Bed, ceasing to amaze me with a laugh. This life, so swift, we are gentle warriors out here. I hear ya! I hear ya! I feel ya! Manners of consumerism, "really", so ridiculous! PS I will head to hospice or Switzerland so I think now. O.O……XOXO

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  26. Because you are able to convey your thoughts and feelings so extraordinarily well, all of us, your fifty billion friends who love you, have broken hearts today, too. Carol is in a better place, wherever she is.

    ...wait. You're writing a book?! :-)

    Cindy Neal (Houston) (I love Paris)

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  27. Thank you Ellie for this. You probably have no idea how many lives have changed because of you. Every single blog post I read, I share with family and friends. You initiate a dialogue that is honest and open and in telling your story, you allow us to bear witness. I have no doubt that we (all of your best friends reading your blog;)) pray for you every day, and I also have no doubt that through this conversation about ALS, we view the world with much more compassion and insight. In bearing witness to your own suffering, our hearts and minds expand and the world changes. I can't imagine living with ALS, and yet you are LIVING with ALS…you are not dying with ALS. You breathe light, laughter and love every day and you my friend, change the world. YOU DO. My heart aches for you in your grief. You are beautiful, vibrant and ridiculously strong. Sending you peace. xob

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    1. You said so eloquently what I would have said, Thanks

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  28. Wow! I am so sorry for your loss! And I am at a loss for the right words to share with you! Sending positive thoughts and prayers from Huntington Beach, California.

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  29. You are the sanest person I know (or feel like I know). I am going through many things in my life right now including raising a teenage daughter who has twice attempted suicide this year. She explains it to me and I do get it - although I am doing everything in my power to ensure that she takes her own life only over my dead body. I want you to know that on a regular basis your posts totally make my day and you have truly touched my heart. I am so sorry about your friend Carol.

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    1. Dear Mary Louise, I read every comment that comes through the blog and I want to make my own comments back but I have to save my voice. However, your comment really struck me. I am so sorry about your daughter. She must be having a really hard time. Maybe I can help? I am really really good with kids/teenagers. Maybe I could talk to her or we could email? You can email me if you would like… I would like to help you… And your daughter. Havesomedecorum@gmail.com XO XOXO

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  30. P.S. My parents passed a few years ago just six weeks a part. I received a sign from both of them. It took a few months but when it came there was no denying it.

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  31. I am so sorry. No decent person could judge.

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  32. I haven't known anyone with ALS. But with your help I am beginning to understand it and the people who suffer from it. You have educated me in a way I wish I hadn't needed to be educated. You have made me grateful I haven't got ALS and yet I am glad you have used your blog to help me appreciate the life I have and see that even someone with this terrible, worst ever disease can still enjoy life, yet open my eyes to your fears, and all of the difficult things you go through to stay positive. I'm not sure I could. I don't personally know you, yet I think of you often. And I think of others with ALS because you have made them come alive in my head with a new understanding of what their life must be like. And through it all you do it with honesty and humor. Thank you for opening my eyes.

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  33. my heart is open wide for you....and broken at the same time. i carry you in my prayers.

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  34. Dear Ellie,
    Thank you for sharing such a personal story. I am so sorry for the loss of your friend Carol. Your friendship must have given her much comfort. Wishing you peace in your grief.
    xo Lisa S.

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  35. Feel better??? Sometimes you just have to get it out to move on. Or at least not let it fester longer than necessary. The many layers of: Dignity. Bravery. Truth. Reality. Who's to say? After you recuperate from your exhaustion you will fight another day. That's who you are. Until... Who's to say?

    Raw. Intense. Honest. I'm glad you don't apologize. Thank you for sharing your fragile strength.

    Sometimes when I lie in bed at night and look up at the stars I think to myself. Man, I really need to fix the hole in that roof.

    Keep on keeping on. However...

    David
    NYC

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  36. Dearest Ellie,
    My deepest condolences on the loss of you friend, Carol. I so understand your righteous anger, you've earned it. I love your brutal honesty, as well as your humor, and the truths you tell. I want the day to come when 'dying with dignity' is included in the Hyppocratic oath.
    Sending you love,
    Joanne

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  37. People cope with tragedy every day. Everybody will die. But somehow you are different.
    I am staring at the tragedy of your loss and I am watching in horror. Peace and courage.
    Martha in Kentucky

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  38. My deepest sympathies at the loss of your beloved friend. No doubt about it, ALS just sucks. I will echo what many have written and thank you for educating me as to the trials and tribulations a person experiences who is afflicted with this disease. I also want to agree with your comments about support groups. I have had breast cancer - double mastectomy - and after my first mastectomy, I ventured into a support group. I heard it was supposed to help. I walked out knowing that this was the last place I needed to be. I put my energy into changing laws and raising money to help eradicate the disease. Many blessings to you. And thank you again for your honesty. You are a bright spot in my day - no matter the subject of your posts! Barbara

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  39. Dearest Ellie.....
    Thank you for sharing so much of yourself. Every post you write wakes me up to life a little more and helps clear my vision. They are gifts. Your courage is truly inspirational. It is so insanely unfair, cruel, mean, ridiculous, and flat out fucked up that you have ALS....I wish you didn't with all my heart. I love you and think about you all the time. jane xxx
    PS...something you don't know about me....every time I read a new post of yours, I am hoping that La Contessa has made a comment to read also... :) xxx

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  40. Sometimes it seems to me horribly selfish that our culture insists that we not take our own lives, no matter what. It is so easy for the healthy to proselytize about the value of life and the value of suffering. But the fact is that you demonstrate the value of your life, to yourself and to others, every day, by the way you are living it. So thank you, Eleanor, for each day that you continue to live and for what you continue to be and to give. And if you reach the point where staying alive is too much, and that reality is sustained, then I hope that you will be able to choose whether to live or to die. I can attest that just having that choice under the law is liberating and therefore life enhancing. With you and for you no matter what, Leslie in Oregon

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    1. Leslie, well said..."you demonstrate the value of your life, to yourself and to others, every day, by the way you are living it".
      Eleanor, thank you, again, for breaking the barriers of what a blogger is "supposed" to write about on a design blog.

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  41. Dear Eleanor,

    I am glad you can let it all out, and I feel so much for your loss. I will keep you in my prayers, today and every day.xo

    Nathalie

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    1. Ellie,
      I am so sorry for your loss and for the heavy burden you are carrying. Please know that if we could lift this from your shoulders we would. My thoughts are there with you as is my gratitude for your blog.

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  42. Dear Ellie...From the bottom of the world in the Antipodes I read your postings with continuing wonderment and ever deepening respect. You give a gift to everyone who reads you making our lives richer for somehow "knowing" you and those around you. Thank you!

    Christine

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  43. I am so sorry. I want to send you my deepest condolences on the loss of you friend.
    Judy

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  44. Dearest Ellie,

    You are Amazing. I am so in Awe of you. You are my Gold Standard in how to behave in dire circumstances and severe ill-health. Whether you are dishing up a fabulous style confection for us or sharing your deepest pain, I am so glad you are writing this blog and giving us the gift of You!

    I am so sorry for your loss of Carol and your own losses for which there is no solace. And while I Hate that you both, (and others) had/have this horrible soul-and-body-sucking disease, I am so glad you and Carol found each other and were able to be real for each other, cause you're right -- no one but someone else with ALS can know what it's like to go through life the way you are going through it.

    You give me courage, and by telling the truth and by sharing how you "really are," in all your mortality I feel validated in my own life with my own illnesses. And yes, dying with dignity should be an option everywhere. Though I don't have ALS and my debilitating illnesses are "Invisible," I am very familiar that if I answer that question of "How are you?" with the truth people get very uncomfortable. While it is not my intention to ruffle and upset these "sensitive" souls, it is important for me too, to be real, (though, I must admit, saying how I'm really feeling is extremely effective in ridding myself of their company if I don't want to talk to them -- I even have a fantasy where I show these folk videos of my latest surgeries and treatments which sends them screaming and fleeing out the door -- of course I would never Act on these Impulses of mine, but I thought you might appreciate the sentiment).

    Thank you for sharing so much of yourself, Ellie, you are a Beautiful Soul.
    Love and Hugs,
    Sabrina in Port Townsend, WA

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  45. I have tears running down my face....I am so very sorry for your loss and your heartbreak....Thoughts and prayers are with you from California tonight. xx

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  46. Darling Ellie, just came in from a day out, stopping by to say hello to you, thinking of you and to…thank you for waking me up to ALS. I was at Dr. Bawa's today, a neuropath, my nurse's mom has ALS too…I am really looking into this, I study medicine, nutrition, and endlessly look at fancy- schmancy things…I'm making spaghetti for dinner….big deal right! chill in ~XOXO

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  47. I will believe for Carol too. May God hold her and keep her in the palm of his hands.

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  48. Ellie
    Only word I think of is Courage. You have so much courage. You make me want to fight harder and have the courage you do.
    Hope Carol gives you the sign soon.

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  49. Hi Ellie,
    I read this days ago and wanted to say something and attempted, deleted, attempted again and then knew that there really was nothing I could say. ALS is a horrible disease. It's a thief. It's unfair in the fullest sense of the very word unfair.
    But here I am again because I want you to know that I, like so many others, feel privileged because I am allowed to read your blog, your vast insights and knowledge. You are a one-of-a-kind and how lucky we are to have stumbled across you!
    But much more than that, I, like everyone else here, feels heartbroken for you. I wish we could change something, wish there would be news of a very promising medical discovery, wish we could all help you carry this burden so it becomes lighter for you.
    I am in a support group for a rare and horrible disorder. It's not life-threatening, but it is physically, mentally and emotionally horrible to live with. Makes you want to escape your own body just to find some relief, feel normal again. Last year we lost a lady in our group to suicide. I found out later she wasn't the only one (that we know of). In the absence of a cure or any quality of life, what choice did she have? I didn't blame her. In fact, I feel very strongly that should things get so unbearable, to know there is a dignified way to end that pain is incredibly comforting.
    I'm one of those people who claims to be agnostic but find myself praying to such an extent I should probably reconsider my beliefs. I'm praying for you Ellie.
    Much love xoxo

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  50. Sending you so much love, support, and strength from across the miles. One can only imagine how you must be feeling. I'm so very sorry for the loss of your sweet friend Carol, I hope she reaches out to you very soon. We will all be waiting with baited breath to hear about it when she does! xoxo, Kelie in Seattle

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  51. Heartbreaking news. Thank you for sharing your joys and immense sorrows with us. What a privilege. My thoughts are with you. La Vie En Rose. Annabel x

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  52. Dear Ellie,
    You are amazing. I don't think you want to hear that right now, but too bad! It is true. You are an amazing inspiration because you have a unique ability to shine light on darkness. I want you to know that I admire you and your courage. You so eloquently use honesty to show others how to live.
    Now, please tell us more about the Russian daybed. upholstery material/color? how did you find it? What accessories did you pair with it? Wait a minute...please tell us about the Russian daybed AFTER your caregivers take you to a decent garden or at least a nearby park.
    Something you don't know about me...I would rather buy cute and stylish outfits for my twelve year old daughter (whose name, by the way, is Ellie too!) than for myself.
    xxoo

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  53. Yes ALS sucks, it takes away your ability to live a whole life. I am a nurse and have nursed many people over the years with ALS. Who are we to judge the raw emotions of a life taken away by this disease, we who do not understand what it is like to exist each day and attempt to cope with the inevitable. ALS truly does suck!

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  54. Dear Ellie, I am so very sorry for your loss and your heartbreak.

    Thx for being so open about your feelings XOXO

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  55. It sounds like Carol had a lot of things right. She may have even won her "Golden Ticket" to the Chocolate Factory ;) Vodka & chocolate! Made me smile from ear to ear. I'm hoping it was Patron with a side of Valrhona. Ellie, I'm secretly hoping the Long Island Medium makes a connection for you. A sign is good...a message even better. XOX

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  56. After graduating from college, instead of figuring out what I wanted out of my life like most 20 year olds, I became the primary caretaker for my Dad who was diagnosed with pancreatic cancer. Terminal illness blows. And my father died in pain and we were all there to watch. It was the most awful thing I've lived through. I constantly felt like I needed to be positive in order to reduce other people's discomfort about the situation. Thank you for being brave enough to be honest and to be negative and to understand why someone would want to take their life.

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  57. I've found your blog thru another blogger - "Preppy Empty Nester" who said she's your BFF although you don't know it yet ;) On the one hand, I am certainly sorry for the loss of your friend and yet on the other hand, I am happy that she has finished off the vodka and dark chocolate and left that ALS body of hers. A dear friend of mine passed several years ago from ALS and actually chose to do the same, stop eating & drinking and let it happen. She was with her family and actually had a slumber party with her 3 sisters the day before she died - that was the one thing she wanted to do. I lost a very close friend to non-Hodgkins lymphoma several years earlier and, at her service said "a woman's strength is not measured by the size of her muscles in her arms or her legs; a woman's strength is measured by the size of her heart". My ALS friend was also a very strong woman and I suspect you are too. ALS sucks, as does any debilitating disease and I hate hearing about it. Yet I love how you go on with your life and let all of us be a part of it. And I hope you've heard La Vie en Rose by now! If you don't hear it out loud, I'm betting you're hearing it in your mind, your heart and soul and hey - that counts too!

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  58. Your honest, open writing rocks me to my core. So very sorry for your loss.

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  59. I am in awe of you. To be living with ALS and still have such a great perspective, is awesome. I'm glad your friend Carol went on her terms. Who are we ever to judge anyone.
    I live with a terminal disease but am in a partial remission, and honestly, I cannot complain after reading your blog. But, still, you are doing the world of bloggers, etc an incredible thing by describing what you're going thru.
    Thank you!

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  60. Dear Ellie,

    I’ve struggled trying to find the right words to convey my heartfelt sympathy.

    Below is a quote from “The Little Prince”. My husband and I have always found comfort in these words.

    Thank you so very much for all you do and for making a difference. You are amazing, courageous and so honest. Bless you.

    Thinking of Carol…

    “In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night.”

    xoxo

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  61. Dear Ellie,

    My Mom introduced me to your blog and I'm reading with tears streaming down my face. My Mom/best friend was diagnosed in March with als. She was an interior designer too! I can't imagine the odds of that! I love your humor and spirit. I hope you could connect with my mom someday. Her biggest fear was the socializing at als clinics. She said it doesn't help me to meet people with the shit as disease as we call it, I don't want anyone to have it! I'm sorry for your loss and I'm looking forward to following your blog.

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    1. Well all I can say is that birds of a feather flock together. I do not socialize in ALS clinics either. Whenever I go to the doctors office, the ALS clinic, I pretend I'm there for something else. I don't want to be one of them. I don't want to be in "that group." I don't want to be in that group that's dying if you know what I mean. However, I do want to be around people who are like me… Designers. So have your mother email me. I can tell we are already going to be good friends. XOXO

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  62. I finally got around to reading this post and I am grateful for your brave honesty. Just amazing, thank you so much.

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  63. Ellie - I can't imagine why I haven't read this particular blog before, I click on to your usual one as soon as it hits my Inbox. All I can say is, wow. I'm sitting listening to Piaf singing, with tears in my eyes, because I just hate that someone as stroppy and brave as you is having to suffer ALS and that your suffering is compounded by having to see its effect on your family. The Piaf just clicked on to Je Regrette Rien.......I can't even tell you to fight the good fight, because you're already doing it, with courage beyond comprehension. I don't believe in God the Father, but I do believe in some kind of higher power. If there is one, you'll be rewarded in spades. If not, you'll always be remembered for the sheer humour and power of your writing. I so wish I'd been in that elevator with you in Galleries Lafayette, I would have been on the floor laughing.

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