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Don’t mind if I do, Gramercy Park...


 

In Manhattan, New York there is a very special park called Gramercy Park. This park is so special that it's private and can be only accessed by those #LuckyDucks who live on Gramercy Park. And they get a key. The golden key to Gramercy Park. Be jealous, be very jealous.

But, guess what? As part of an old New York charitable holiday tradition, the gates to Gramercy Park are open to us losers on Christmas Eve! The Gramercy Park church, Parish of Calvary St.George, will also be having carolers starting at 6 PM in the park. This is absolutely not to be missed!

You may be wondering why I am so excited about this. Well, it’s hard to even write this without crying, but Gramercy Park happens to be the last place I was before, minutes before, I was diagnosed with ALS. I thought that I would let you guys in on a chapter of my book about it. I should have my book finished by March but I thought you guys would like a preview of the Gramercy Park chapter.

 Here it is…

Gramercy Park

Gramercy Park on the lower East side of Manhattan has always held a special place in my heart. The name alone just sounds cool. Then there is the Gramercy Park Hotel designed in part by one of my favorite artists, Julian Schnabel, with its amazing color scheme of rosy reds, Fire King green and sapphire blues. Then there is the architecture of the brownstones around the park. A little village within a big city. And then there is the garden. The secret private garden to which only a lucky few hold the keys.

I always feel like a little part of me is still in Gramercy Park. Like a little bit of me is still wandering around the park… The part of me that doesn’t have ALS.

As I walked out of the offices of 1stdibs on my lunch break casually walking to the neurologist office for what I thought would be a quick appointment, I never imagined that this would be my last carefree walk. Physically it was not a carefree walk because I had a strange limp and I was worried that every crack in the sidewalk would cause me to fall flat on my face. Mentally, all I was thinking about was the beautiful park.

I walked past the church at the corner of the park and I remember saying to myself, “On my way back from the neurologist appointment, I need to stop at the church and check out their little thrift shop.” I was thinking that I needed to come back to the Gramercy Park Hotel for cocktails later that week with my girlfriends. I was thinking, “God, I wish I could afford one of these brownstones around the park.” My mind floated around thinking how beautiful and lush the little garden was and if the residents who held the coveted key to the garden could grow tomatoes in there.

What I was thinking about was just… Nothing. Now all I think about is… Everything. That five-minute walk in Gramercy Park was the last trace of who I used to be. That girl was like you… She had worries but they were just regular worries. Can I pay my rent this month? Is Gracie getting good grades in school? Does David love me more than his ex-wife? Why are my friends such bitches? Will I ever forgive my father? You know, regular worries. My days were normal...wake up, deal, go to bed. I walked around Gramercy Park that day with my head in the clouds and what I would give to go back to that day.

Sometimes I close my eyes and try to remember that moment in Gramercy Park before I walked into the doctor’s office. I can see it, feel it, smell it and almost taste it. I want to remind myself of who I was before and what it felt like to be carefree. I haven’t been carefree since that day. I want to cherish those few moments and have them emblazoned in my soul so I don’t ever forget what it was like… Before.

Sometimes I beg God to just let me have those few moments of liberty back. Let me just walk around the park again without knowing my fate. Let me be ignorant, let me be blissful, let me be unafraid. If I could just have back a few moments… I would run around that park smelling every flower letting myself get pricked by a rose thorn. I would pop into the hotel and grab a cappuccino. I would peer into the bottom windows of the brownstones. I would skip over the cracks of the sidewalk. I would walk down the tiny broken steps of the church thrift store and pick things up and put them down at my leisure. Hell, I might even stretch out my arms, lift my head to the clouds, start spinning around in circles and sing a little song. At the end of my allotted time, I imagine I would try to renege on my deal with God and I would ask for more time. Don’t make me go forward to my life with ALS. Let me just stay in this park without ALS. Just give me another few minutes… This time I will cherish it, I promise.

So I encourage all of you to get over to Gramercy Park on Christmas Eve...
 

 

 

 

New York city

77 comments:

  1. Wow... no words. Just sending you some love and light. xx Valorie

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  2. Oh Eliie, funny how one tends to remember those minutes just before your whole life takes a turn. Thank you for sharing this. For reminding us to cherish those simple moments and being thankful for them. I don't think I would have your courage if I had ALS. You really are an amazing person. God bless you beautiful lady.

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  3. Beautifully written. Gramercy a park I know very well. I lived at 17th and Irving, and a swanky friend had a key to the park. And it was everything you described, and more. You writing this is an act of generosity, a call to so many of us to live with a scooch more gratitude for the small moments in life that don't seem significant at the time. In your honor, I will take a moment and stop worrying about stuff galore and look at the world with fresh eyes. Thank you Ellie!

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  4. As I sit here reading this post in my Gramercy Park apartment, I vow to finally visit the Calvary thrift shop, stop in for coffee at Maialino more often, and stop b*tching about all the traffic every time I walk the dog. Thank you for this reminder to stop taking these moments, this neighborhood, and this life for granted. PS. Already have peering into brownstones covered - who can resist?

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  5. So lovely, Ellie. I will wait 'impatiently for your book in March. I live in the Midwest but am lucky to travel to NYC a few times a year. I will learn to cherish my time in the city and use your words of wisdom to inspire me. I love all your blog posts -- thank you for sharing such intimate feelings and life experiences. . . . you are a special person!

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  6. I do hope you give yourself credit for continuing to seek, find, and enjoy beauty as you do so well. I can't imagine how different you feel from that day, but it's a testament to your iron will and love for life that you're still that same woman in many ways. Still smelling beautiful flowers, snooping around beautiful houses, critiquing not beautiful things. I'll be too drunk from David Bunny's fondue to stroll in on Christmas Eve though.

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  7. I check your blog because there is always a chance I am going to blown away by something you say...you are very generous with your thoughts. Thank you.

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  8. Ellie, next time I am in NY I will walk to Grammercy Park, even if I can't get in I will lurk and twirl and think of you. You brought so many things that I love into my mind Julian Schnabel (whom I met when he was in Miami promoting Miral), 1stdibs and a vision of you happy and carefree. I love you Ellie and I am so grateful for you and for your reminder to stretch my arms look up at the world and twirl.
    Xoxoxo
    Lourdes

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  9. Thank you, Ellie. Your words are a gift to me, and everyone who reads them....

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  10. Thank you for sharing this. A timely reminder for all of us. I can't wait to read your book. I wish with all my heart that you could get your wish. Den xx

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  11. Our lives are relative to our experiences. It's like that country song "Live like you are Dying". We don't truly appreciate something until it is taken from us. I wept as I read your words. I'm angry someone I love so much was given this hand to play in life. I beg for a reshuffle. I love you El, that's all...I LOVE YOU!!! - Deb

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  12. THE BOOK WILL BE A BEST SELLER...............I will want a signed copy!I may have to come get that myself in person!MARCH is your BIRTHDAY RIGHT?I need to teach HEATHER to DRIVE and come meet TEDDY!NEVER MIND check out your DECORATING SKILLS in PROVENCE!!
    YOU HAVE HAD AN INCREDIBLE LIFE..................THANK YOU for sharing your thoughts and MOMENTS with us!
    I am on PINS and NEEDLES for THE BOOK...................
    YES< I am coming......................SPRING TIME SOUNDS GOOD TO ME!
    FINISH THE BOOK as you have LOADS of people who will want to scoop it up.
    LOVE TO YOU,
    XOXOXO

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  13. How you open our hearts and eyes to the captivating aspects of living... My personal gratitude to you .. Regret that in my years in N.Y.C. I did not avail myself of the Gramercy Park mystique or go to the Calvary thrift shop ala Ellie... Would gladly exchange my "free" moments with you now, so you could go whirling with face and arms held high above to the light, reliving the essence of carefree on a Christmas eve....

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  14. Your post puts living in to perspective on so many levels. You are a strong and courageous person with talent, gusto and will for life. You are a force unlike any other. If I could make one wish, I would wish you back to good health...and return to Gramercy Park. Thank you for posting. I enjoy each and every post. Susan

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  15. My heart aches for you. If only we could relive our best memories over and over ad nauseum. I bet there isn't a one of us that wouldn't make a deal with the devil to do that. I hate that ALS and all the other despicable diseases that rob us of life while we are alive exist. So grateful you are here to share your and help us appreciate our blessings...

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  16. Just like I believe every high school student should have to have a real job before they get to enjoy college and what it is like in the real world, I sometimes wish we were all given the chance to have an experience of losing almost everything precious in our lives but then get it back so we can truly appreciate everything, big and small.
    My mom was diagnosed with an end stage lung disease. Without a lung transplant she would die within 2 years. For 7 months she suffered, getting weaker and sicker by the day, I know because she moved in with me and I had to take care of her 24/7. Miraculously she received "the call" and she got her transplant.
    She knows what it feels like to bargain with God and get a second chance to not only have a few normal minutes again but a normal life again. Sure she has to take pills the rest of her life and be careful with some other things but she is alive 3 years later and better than ever.
    I wish you some how get those moments back, I know more than most you would appreciate any second of it.

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  17. Ellie,
    Thank you for your wonderful inspiration. You are so brave and I have so much admiration for you.
    Now, I would never dare to compare my struggles with your battle with ALS, but I do understand where you are coming from with this article about Gramercy Park and appreciation. Six years ago, I was training for a marathon, raising my three kids, and living a good life (not perfect - but good). Like you, my worries were about the normal things. Then, one day a crazy, intense pain went through my head to my left eye. I felt like someone had shoved a javelin through my head. It has been like that 24/7 for the past six years. It has been life changing. Truly, I have seen the real nature of people... good and bad. I have also learned some life lessons that I wish I would have known before becoming chronically ill. Like you, I wish I could go back and relive a small, blissful moment.
    Thank you, Ellie, for sharing. I wish you ALL the best!!!
    Michelle from Santa Barbara

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    1. Sending you good wishes, Michelle.

      B

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  18. No words. Thanks for sharing with us.
    Astrid

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  19. So, you can understand why your blog changed my life dear Ellie. Thank you for your words, thank for being you, unique you!

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  20. If only, dear Ellie, we could give you back not only those few moments but indeed your health, I don't think there's a one of us who cares for you who wouldn't do it in a flash. I know you say you are not brave, but there is courage and joy in your bright, lovely spirit. Your willingness to share those things with all of us is generous and kind and courageous. I will always be grateful for you, and for what you have taught me about living each day as if it were your last. Thank you for your spirit, which has helped me every day.

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  21. Ellie, I can only see you through your words. And what I see is not a struggling body but a beautiful spirit. The only Ellie I know, that I see when I close my eyes, is a beautiful woman with her arms extended to embrace life as she twirls. That is who you are, Ellie, and nothing can rob you of that. That is who we all love so very much.

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  22. Beautifully written, what a jolting reminder to cherish every single moment, the good and the less good. I've been feeling cranky because I'm in the midst of moving and have to carry my boxes up 34 steps, but I am now reminded to sing and skip while I carry those boxes, because I can. Thanks, ellie.

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  23. Love that little park. Love you!

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  24. PS. Guests of the Gramercy Hotel are allowed into the Park. The doorman unlocks the gate for guests. You can sit and stare at the apartments surrounding the Park, then afterwards you can study the real estate listings online for properties surrounding the Park. And wish.

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  25. We have always wanted to go to New York for Christmas. Gramercy Park is now on my list to do! When I go I will think of you Ellie and I will twirl!xx

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  26. I am so moved that I can't find the right words...so I am grateful that so many others have. And I am very grateful for you.

    Please keep working on your book...we are all waiting for it and so are many, many who don't even know it yet...

    With much Love and Strength,
    H

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  27. So touching. I love your mind; your humanity; your ability to put into words such heartbreaking feelings. You and your book will touch so many. That is a legacy, my dear.

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  28. Thinkin of you and wish lots of love to you. We are all fighting with you and praying for you. Becky

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  29. You are O N E R E M A R K A B L E W O M A N.

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  30. Ellie,

    This is beautifully written and I agree a reminder to cherish the little moments in life. My hope for you is that you will find another beautiful park in your new area. I know you will not be as carefree as then. Oh how many of us would like to turn back the clock.

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  31. What a fantastic piece of writing, and how I wish your story could be different. If anything can make us all think 'Carpe diem', it would be those few paragraphs. Respect.

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  32. Tears of gratitude to you for the reminder to cherish what we have now. Each of us will savor what we have for YOU!! I wish you carefree as well, I wish you BEFORE now. You are so incredibly generous in your sharing of yourself-THANK YOU!! and while I live nowhere near Gramercy Park, I will visit in my mind through the images your words have painted.

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  33. Thank you for some of the most important words to be said in recent times. We all need to be more cognizant about how dear the little things in life should be to us and that how in a flicker of a second our lives could changed forever. Au courage...because you have more than most. XO

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  34. Once again, I am blown away by your ability to take us right there with you. Thnak you so very much. Suz

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  35. Ellie you always move me beyond and what I am so in awe about you is that even since that horrid day, you have continued to live your life to its very fullest! You are an inspiration to all of us!

    xoxo
    Karena
    The Arts by Karena
    More Books for the Holidays!!

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  36. My heart is with you and thank you for reminding all of us to enjoy life right now to the max.

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  37. Your storytelling ... I can't wait for the entire book.

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  38. Wow! You made me cry! Beautiful, I felt I was in that park! Next time I am in NY I will keep that place in mind and think about you when I would be there. You are so courageous, I just can't imagine what you are going through, you are a superwomen, thats for sure!
    sending lots of love from Quebec city!
    french canadian girl from Quebec city! Bon courage!

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  39. Beautiful, sad, smiles, tears. You are my hero Miss Ellie.

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  40. I too am anxious for the book. I hope it's long! You speak to the core of one's pain and joy and loss and love in life. How DO you 'connect' like that?? Amazing! xxoo

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  41. Your book is going to be a wonderful read. Cannot wait to get my hands on it even though I know that the tears will fall. You write so beautifully and evocatively. I look forward to every post you do Ellie. I can't express how much I wish your circumstances were different.
    Cindy F

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  42. If you do not mind, I will take this post as your christmas gift to me! You and your family will be forever in my prayers.

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  43. To all of Elle's friends who are touched by her spirit and her indomitable zest for life...Let's set a time on Christmas Eve when we will all go outside, spread our arms wide, lift up our faces to the sky, and twirl, and twirl, and twirl...just for Elle. What do you say? I am going to twirl. I hope some of you will join me.

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    1. Our peaceful version of A Call To Arms? ;) I'm in! Where are you Isla? And what time? I'll figure out the equivalent EST in the USA.

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    2. Hi Donna. I am in Mississippi. CST. I was thinking 7 p.m. But can certainly change if another time would be better. Let me know. Thanks.

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    3. Hi Donna: Apparently my reply never posted. I'll try again. I am in Mississippi, CST. I thought I would twirl at 7 p.m. I would love for this idea to take off. Let's try to spread the thought.

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    4. I love this idea Isla. Will you keep bringing it up in the comments here? I think a lot of people would like to join you.

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    5. Donna I have been trying to reply but can't seem to make my reply post. I am in Mississippi, CST. I will twirl at 7 p.m.

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    6. Heather, I enjoy your blog also. I was reading it before I found Elle. I reached out to SAJ about posting the twirling on his much read blog and he said he would post it on the 23rd! Hope we can really twirl up a whirlwind of delight for Elle.

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    7. Hi Isla: 7 pm CST, 8 pm EST it is! I hope others will join us. The weather's supposed to be 70 degrees and raining here in Potomac, MD - I shall be dancing barefoot in the rain :) Let's whirl and twirl like the mystic Sufi poet RUMI.

      "We come spinning out of nothingness scattering stars like dust. The stars form a circle and in the center we dance. ~Rumi

      Ellie, I expect you'll be in a deep sleep by 2am Provence time, but if you start seeing stars, it's just us, scattering stars like dust and thinking of you. XOX

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    8. Wow Donna. Beautiful thought. Yes, lets scatter the stars to form a circle around Elle...we'll dance in the center for her.

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  44. Absolutely wonderful, touching excerpt of your highly anticipated book (let us know when we can pre-order!). I hope you will come to love and be comforted by your own beautiful gardens and delight in Teddy's enjoyment of his new special home and mistress.
    You are a beautiful soul and your writing reflects that beauty.
    xoxo

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  45. Thank you Ellie for sharing such a private time in your life. I'm crying...

    B

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  46. That my dear was the End of the Innocence. Sadly I recognize this.

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  47. Thank you for reminding me to cherish it all. I love you.

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  48. Ah, too much to say, but I'll keep it simple. Thank you for introducing me to the park and the gift of your perspective.

    Can't wait for the book.

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  49. My heart goes out to you, I am so sorry for your illness. Beautifully written blog, thank you for sharing I just wish I had a magical wand to make everything right.
    Love Lillian xxx

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  50. Oh Dear God, Ellie thank you, sweet young lady for your words. You bring everything what is important, that is taken for granted, in our lives, into view. I don't know you in person, but know the woman you are... thank you for the wisdom and strength you share. You are our WONDER WOMAN.........from me, and those of us who are lucky enough to read your awesome blog!!!

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  51. You will be always remembered after you leave those of us behind, who are still weeping in this valley of tears. A prayer that makes me think of you.

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  52. Ellie, I'm relatively new to your blog...perhaps five or six months? When I open my e-mail I always do a "Quick Find" to read your blog first because it usually makes me laugh, especially your endearing, sometimes "potty mouth," just like me and my best friends. Your blog is a breath of fresh air in our now ubiquitous PC culture, which I despise. I so love, Ellie, you talking about your ALS, not keeping it closeted, raging against it when you feel you've had "just about fuckin' enough of it," then somehow gathering yourself again and again to sometimes make fun of your predicament, yet for the most part sharing with your readers what, in other circumstances, may seem a privileged dream life. I'm not at all a religious person, yet I find myself praying for your well being and a miracle to somehow make you physically whole again...and I'm more than certain that I am not alone in those prayers, thoughts, and wishes for you. Patricia Wilson, Connecticut

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  53. With your writing talent, body of work in various forms, and your ongoing biographical writing project, girl, you need a publisher now. You already have powerful contacts who would surely plug you into a solid publisher, so "go there", pull-ease.

    I can count on one hand the number of writers who can compel tears and laughter in the same paragraph, and you often do it in the same sentence.

    Please explore.

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    1. Yes! I was thinking that Ellie's book should reach a wider audience too.

      It puts a face on ALS.

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  54. Gramercy Sweet Ellie!! It may be an archaic Anglo-French word but it expresses beautifully how your writing makes us feel - Grand-Merci! If I come back as a bird (free as a bird) in my next lifetime, I’m definitely checking into the Gramercy Park Birdhouse...a 6-story purple pagoda with a golden pineapple on top – How cool is that! XOX

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  55. Ellie...beautiful, moving story. I cannot wait to read your book in March. Learning to cherish is so key to a happy life. Thanks for reminding me. Have a Merry Christmas. Keep your funny, moving words coming to us, your faithful readers.

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  56. Ellie, I don't know you, but through your posts have learned a bit about your life. After reading this post, all I could think of was how very much I too wished you could have endless moments in Gramercy Park. Free to live life as you did before ALS.
    You are in my thoughts today, but your own thoughts and determination are what push you forward. Clearly, you are an individual that exemplifies strength and intelligence. Those are the virtues that identify who you are in this universe. Sending love & appreciation to you today!

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  57. Today I am feeling really crummy. I have a relative whom I've never met only talked to her on the phone. She is 70 years old I am almost 60. I found out about her a couple of years ago and I reached out to have a friendship with her. She has lived with depression her whole life, gotten much worse in the latter years. She hates everything. Where she lives( New Jersey) she feels there is not one intellectual person in the state. Hates her doctor,he's an idiot. Etc.etc. I don't talk to her very often because she complains about her hideous life through the entire conversation. Usually I just listen. Today, I challenged her to change one thing about her life. The conversation did not end well. She hung up on me. The entire time I was talking to her I kept thinking why can't you be more like Ellie. She would gladly take on your depression in exchange for ALS. At lease there is help for depression. I'm not feeling very good about the way I handled myself today. I was no help to her. I wish I could some how bottle up your positive energy, sense of humor and strength to live every day and pass in on to all those who are hurting.

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    1. The difficult thing is that if her depression is due to brain chemistry, then changing her life won't do the trick. Many people who suffer with depression have to try multiple medications to find one that works. Sometimes nothing works.

      She hung up because she felt judged. My ex suffers from depression. I know it's hard to listen to such relentless gloom, but depressed people only want to be heard.

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  58. This was so beautiful Ellie. Thank you for sharing it. I can relate, though to a different degree. That previous life haunts in dreams, and that moment of waking when you have to re-experience "the diagnosis" and life as it is is so painful. Yet you keep on living so beautifully, and for that you are a true hero. Your meditation reminds me of a shockingly beautiful book called "Wave" by Sonali Deraniyagala. I recommend this to you if you've not read it. I am looking forward to reading your work. Happy Holidays Ellie!
    Sherry

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  59. Every once in awhile as I’m read something you’ve written, I can hear my heart breaking down my own personal ‘Ellie fault-line’.

    I think you’re writing a REALLY IMPORTANT book because even as you write about remembering ‘who I was before’ and the heartbreak of everything ALS brutally wrenched from your life, in all the ways that really count you’re still the same determined, creative, irreverent, vibrant woman who supports and inspires her friends and family every day, not to mention all of her blog readers.

    For everyone who will read your story, how many will find hope and a formula to persevere, and discover that there is still the possibility for joy and great accomplishment even in the face of unimaginable challenge? You’re an ongoing inspiration, Ellie.

    XOXO / Nancy

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  60. my love to both "YOU" and Yolanda....we girls forge ahead...just got a false test again, claiming prediabetes and thyroid, the test were 100% incorrect..and believe me, we were through......not till after I stress "again"....I study all the time....
    constantly seeking things for ALS, Lymes, and in general....why there have been many "new" announcements lately to invest in curing diabetes, some Drs. see "great" promise....Sean Parker (of Facebook) just designated 10 million to AudioImmune Diseases & Drs. Peng Yi, Stephen Kissler, & Tom Serwold are seeing great promise to a cure "now" making very positive strides in the field of Diabetes T1D and T2D........XOXO

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  61. I can't wait for your book! I love your blog...your raw words and the amazing amount of joy you obviously still have in life. You inspire me!

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  62. My dear Ellie... Wow... You must just had given me, the gift of life... I've been feeling so down lately and not wanting to go anywhere outside my house... I'm heading to the shower and outside to try to speed my arms for you, and for me too! Thank you for the perspective. We love you, we want so bad for you to get well, we want those bastards to find a cure for ALS

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  63. One more thing, I wish this f-ing thing let me post already without saying I'm pending approval! I never know if my comments reach you and that is bad! I m still crying, I need to read your post many more times. It's a well deserved kick in the ass for me.

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  64. Oh Dear Ellie, you broke my heart...you put into words the line of change that all of us must pass sometime in our lives. What a gift you have given me as this is the first time I have read this blog. Ellie, you live the adage that whatever problem or trial that the fates give us, there is no reason that you can't choose happiness while you work through those problems.

    Even though I weep from your experiences, I find joy in your beautiful and shinning star Soul. I will devour your book.
    Much love, prayers and hope,
    Missy

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