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November November November


(Louvre, Paris. Standing in front of my favorite Delacroix painting. June 2011. I was officially diagnosed with ALS this day. Yes, I still went to the Louvre.)

November. I used to only recognize November as the month of my sister's birthday, voting and Thanksgiving. But now, November takes on a whole new meaning. November is the month that I got ALS. It’s the month that everything started. I would not be diagnosed until the following June. I remember the day it started. I was sitting in Central Park with my friend Diandra, my daughter and Diandra’s three children. We call them the pygmies. (On a strange little side note, one of Diandra’s children is named Hawk, named after Stephen Hawking, Mr. ALS himself.) We were watching them play on the slide and I was about to open a bottle of juice. I was twisting the top, twisting the top, twisting the top but nothing was moving. Diandra looked at me and said, “Do you need help with that?” I passed her the bottle and she opened it with ease. Hmmm, that’s weird.

 That’s how the next seven months went. A series of me saying in my head, “That’s weird.” Day after day I would say it more and more often because day after day things were happening. Rapidly. This is what I noticed…My hair felt heavy when I was washing it. My dog felt heavy when I picked him up. The laundry felt heavy. I couldn’t tweeze my eyebrows or cut my fingernails. Turning the key to open my front door was difficult. Walking up the steps was laboring. I was exhausted. I fell all the time. I couldn’t wear high heels by January. I self- diagnosed myself with sciatica. I’m a genius like that.

 I’ll save all the details for my book but I just want to tell you why I’m explaining all of this. You know how they say that life can change in the blink of an eye. Well, it’s fucking true. October 31, I was fine. November 1, I had ALS. This week marks the start of my fifth year with ALS. I have been sick for four years. That is a lifetime. As I look back, here’s what I think. I think, “Why didn’t I ride my bike more? Why didn’t I go swimming more? Why didn’t I take more walks on the beach? Why didn’t I learn to paddleboard?” I so regret not milking the fact that I had a beautiful heated pool at the country club that I could go to every day if I wanted to but I didn’t because I didn’t want to get my hair wet.

I don’t have any regrets with my daughter, Gracie. I hugged her enough for a lifetime. I kissed her little rosy lips every single day. My over-loving her paid off. She is now full. Full of my love.

 I don’t have many regrets but I do have a lot of wants. I want to do a lot of things but I can’t because of my physical limitations. I want to hold my husband’s hand. I want to make out with him because he’s so cute. I want to squeeze my daughter. I want to get drunk and TP the neighbor’s house. I want to do my own makeup. But mostly, believe it or not, I just want to be alone. Because I am completely paralyzed, I can never be alone. Someone has to be no further than 5 feet away from me at all times in case something happens. It is beyond annoying. I want to get in my car by myself, blast the music and sing at the top of my lungs…By myself. I think the worst part about ALS is losing your independence. I don’t want someone to give me a bath, I don’t want someone to brush my hair, I don’t want someone to push my wheelchair, I don’t want to be noticed and I don’t want anyone’s pity or sympathy. I want to be invisible again, just one the billions of people walking down the street without anyone staring at me. I always imagine what I would do if I magically and instantly got 100% better. I honestly think I would hug Gracie and David goodbye and walk out of the house. I would spend a week or two just by myself. I would try to find myself again. I think I would rent a dirty car, put on my jeans and a T-shirt, put my hair in a bun, drive through the desert, smoke cigarettes, listen to music, stop at some diner and have chicken fried steak and swim in a motel pool… By myself.

 So what kind of advice do I have? Not much, but I have a little. My advice is to feel everything. Feel the joy of hugging your children, feel the coldness of swimming in the ocean, feel the warmth of a bath, feel the sand underneath your feet, feel the pages of a book… Feel feel feel. Say what you mean and do what you love. Don’t waste your time on toxic friendships with miserable people who should never wear white skinny jeans. Don’t make excuses for other people’s bad behavior (note to self). It’s liberating to be 100% transparent. But most of all, enjoy your freedom. Enjoy making your own choices and your own decisions and making your own coffee for God’s sake. What I would do to make my own coffee! Be alone and just enjoy it.

 As I start on year five of ALS, I don’t know how I will behave. Will I become more patient, more introspective, more forgiving? No, I think I decided to be a big brat. Stay tuned.
 

(Louvre, Paris. Sitting in front of my favorite Delacroix painting. November 2013. Yes, I still go to the Louvre but now I get in for free.)   :-)

*Something you don’t know about me? At my very first antique show that I did all by myself, I did not sell one thing. Not one thing! My booth was amazing, I know it was. I was devastated and I cried the entire way home. There is no moral to the story. It sucked. I’m still sad about it. Have any of you had colossal defeats like that? Years later, when I opened my first antique shop, I was so worried that I wasn’t going to sell anything. Good news. Even before we officially opened at 10 AM the first day, a woman knocked on the door and asked to come in early. I, of course, opened the door and she restored my faith in myself because she spent nearly $20,000 on accessories! That was a good first sale! Okay, so the moral of the story is to never give up and believe in yourself…blah blah blah. I should be a motivational speaker. :-)

31 comments:

  1. You will start abusing scotch and not wearing panties. Just calling a spade a spade!!! ��

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  2. You' are a motivational speaker for me. Thank you.

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  3. That was beautiful and motivational. I couldn't help but be awed by you. Thank you.

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  4. love this. thank you.

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  5. You can be a BRAT.........I do not think anyone will care as YOU GIVE SO MUCH.I like your painting.Afraid to say I do not know it............shame on me.Good of YOU to still visit the LOUVRE.It is practically an extension of your home!!!Your story of how it all came about is very interesting too...........thanks for sharing.I love my alone time........now I will share it with YOU!Let's go make a coffee now..........I have just name my coffee machine ELLIE after you!XO

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  6. Ellie, Loved this post and sharing it. So true we don't feel enough due to stupid things like not wanting to get cold or get our hair wet. Thank you for all you write. You inspire me so much.

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  7. gOOd evening Ellie, from across the pond here in Florida, "feel" "feel" "feel" yes Ellie, I hear ya ~ the Louvre is on my list too…art art art I love art ~ never tire of it…if I could swim the atlantic I would tonight to come and visit, roll in laughs together and toast with YOU! XO

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  8. Hello Ellie. I've always admired your good taste since I met you at a show in Newport Beach, and later in Santa Barbara at my antique shows. I'm wishing you all the best. Please keep in touch!
    George G.

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    1. George! Oh my gosh, you won't believe this… Just last Thursday I was searching the Internet for your name and/or your website! I wanted to do a whole blog about you because, as you know, I think you are absolutely one of the best, maybe the best, designers out there. You truly are. Will you please email me your contact info so we can talk more…havesomedecorum@gmail.com. I hope you are doing well. How are your little girls? Maybe they're not so little anymore! Looking forward to hearing from you and hearing all about what you have been up to.

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  9. wow, that was a brilliant post!
    thank you for that gift :)
    xo

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  10. Ditto. Thank you Ellie.
    Michelle

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  11. You're amazing!! I am sure you hear this all the time, but it is true.
    My daughter's birthday is bitter sweet to me as it was on her 4th birthday that I got a breast cancer diagnosis at age 36. It's been a real journey and I'm so lucky as not only have I had great support from my gorgeous husband, family and friends, but nearly 5 years on I'm still here and going strong!!
    thinking of you, Ellie, and I will endeavour to do things with you in my mind (like getting my hair wet instead of sitting out dry) from now on. xxx best best wishes to you and needless to say I love your blog and totally admire you! x Kate

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  12. Ellie, thank you for the reminder to live one day at a time and enjoy it to its fullest!
    Thank you for also letting us know that it is okay to be a brat when you have other things going for yourself :)
    You bring so much joy to my life and you motivate me in ways that you can't even imagine. And thank you thank you for reminding us of what is truly important in life, all those things, including solitude, that we take so much for granted
    You are an inspiration and I hope we do meet in April xoxoxo
    Lourdes

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  13. I am so happy that I discovered your blog. I love every single part of it.
    Thank you for being you.
    God bless,
    Irene

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  14. I have soooo many things to do right now, but when I see a post from you, I go to it right away. You always deliver . . . humor, wisdom, sarcasm, incredible insight. Thank you for today's lesson. I needed that. xo

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  15. i love you. just wanted you to know that people you've never met love you and pray for you. and enjoy the heck out of your writing. you make me laugh. you make me think. you touch my heart. does anything ever happen for a reason. are there coincidences? i don't think so....think how many lives you have touched and are touching. it may not be the way you would have liked to touch....but you are doing it. there's heroism in there. and you probably didn't ask to be a hero. but there you are. in your daughter's and your husband's eyes, you are heroic. and in all the people that you speak to every single blog post, you are a hero. i don't think any of us ask to be heroes. we just are because of how we take on whatever it is that happens to us. you can be a brat. but i doubt you will every reach the height of bratism. you have too much heart.

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  16. Wow, thank you. As I'm driving later today from FL to AL, I'll blast the music and think of you.

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  17. thank you thank you thank you for your beautiful words of wisdom and inspiration!

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  18. Reading about your insights into your soul makes me want to spend the time to look inside myself for insights about me. That is what an inspirational speaker does. You help me put my life into perspective and learn how to grow into me. Thank you for sharing your open honest thoughts.

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  19. Ellie,
    You always make my day! Everything you said in your post is true. Damn you are missing your calling as a motivational speaker.....or are you? I think you do this via your blog, but in a funny as hell way and with style to boot.

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  20. "I should be a motivational speaker"

    Mission accomplished!

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  21. You are a motivational speaker! xob

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  22. Lessons people...........listen, learn and apply to the best of your ability!

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  23. Ellie...I just want you to know that my life is better because I have found YOU.

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  24. You are a motivational speaker! Love you. Deidre.

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  25. You are inspiring. You say what so many have said, and I paraphrase "enjoy it while you can".
    You are doing it - what you can, while you can. A cookbook, a blog that touches many. More people than you probably hear from. You make a difference for me!

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  26. Ellie, thank you. God bless you.

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  27. I don’t know why bad things happen to good people and good things to bad people, but I do know you’re making MORE than a good thing out of your situation. Thank you Ellie for ALL of your invaluable insights. XO

    P.S. I think we’re gonna love your BRATTY ill-mannered posts ;)

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  28. kinda hard to follow that with any comment that merits the post...

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