The Story Behind the Giant Spoon: A Letter from a Mother Who Met Christine

 

It was a dream come true for me to personally meet Christine after reading “The Spoon Theory” a little over a year ago. It was one Sunday morning when my adult daughter, Carly carried in her laptop to the kitchen table where I was reading the Sunday paper and told me to read “The Spoon Theory.” A friend of Carly’s had posted a link on Facebook. After 15 years of being a caregiver to Carly, who has Crohn’s disease, reading everything I could get my hands on regarding her disease, going to therapists… “The Spoon Theory” was the thing that made the most sense to me. I knew the disease left her totally fatigued, but still couldn’t understand why she couldn’t at least make her bed or clean up her dirty dishes. I mean, really how hard is that? Thank you, thank you, thank you Christine for opening up my eyes. Now if I see Carly make her bed or do her dishes or anything else so unimportant, I get upset. It no longer bothers me to see this. In fact it makes me happy to know she is saving her energy for more important things.

            How did my meeting Christine come about? Well after reading “The Spoon Theory” my mind went wild. I had the idea of contacting everyone who knew Carly and asking them to send her a spoon for Christmas; for them to give Carly some of their abundant energy. I told them that they could have the spoon engraved, painted, decorated, whatever came to mind. I also asked that they write something to go with it, explaining why they would give some of their energy to her. When the spoons and messages started arriving, I made a binder with all the personal notes. The first few pages contained the letter I sent out explaining what I was attempting to accomplish and a copy of “The Spoon Theory.” I made a cover that said “Christmas 2009: Carly’s Spoons.” I didn’t want a spoon to lose its recipient, so I had each one engraved with the sender’s name. I purchased a long glass vase only about 4” tall and filled it halfway with pebbles. I typed the messages, glued them on the back of fake leaves, twisted the leaves around the stem of the spoons and put them spoon up in the container, like a bouquet of spoon flowers! I was so excited about this project. My only hope was that Carly would be as touched as I was.

I spent Thanksgiving visiting out of town family and received many of the spoons from them. One niece totally blew me away. First of all, she was the last one I would have thought to participate. Not only did her teenage daughter draw on it with markers with the colors of the rainbow, the note that accompanied it will be cherished forever. She told the story of how her and her mother (my husband’s sister) was sitting together on the couch watching commemorative footage of the 9-11 tragedy. She said to my niece, “They talk about heroes today but I think our family hero is Carly. With the pain and suffering she endures everyday and she keeps up her morale. She’s our hero.” My sister-in-law passed away several years ago. I may not have ever known how she felt had I not done this project. It meant so much to me. Christmas Eve came and Carly unwrapped the book I had made. Reading the cover, she looked up at me with that look of, “what have you done now?” She looked at the first few pages. She got teary-eyed and said she would have to look at the rest of it later. Then I gave her a wrapped box. I pulled out the vase containing over 50 spoons! Carly started sobbing. I gave my husband the thumbs up. It went over exactly how I had hoped.

One of Carly’s closest friends works for the Lupus Foundation in Charlotte. She told Carly about their annual summit with the keynote speaker: “the spoon theory lady”. OMG we were going to be there! Oh no, here I go again, brain working overtime! I needed to do something special for Christine for what she has given me. I Googled, “giant silver spoon” and found a four foot spoon at Pier 1 Imports. I had the handle engraved with “’The Spoon Theory’ by Christine Miserandino.” I engraved bowl part with “Presented with grateful appreciation for ‘The Spoon Theory,’ which stirred long overdue understanding of the daily energy level required to battle chronic illness.”

We drove all the way from Virginia, straight from work the night before the event. The morning of the event we kept watching for Christine to make her entrance. Finally I spot her. At long last, we approach and introduce ourselves. She is happy to meet us. I ask for five minutes, for her to come to our table. I give her the giant spoon. She sees her name engraved on the top, I lift it higher for her to read the rest. She starts fanning herself and tells us we can’t do this to her before she is getting ready to give her presentation. She was truly touched. I told her how much her “Spoon Theory” has meant to me. Even though she has over 20,000 Spoonies, if her story even made a difference to only one person–like me–it was worth it!

It is especially hard for Carly to even leave the house, especially to travel long distances, let alone have enough energy to do so. Meeting Christine and going to this event meant a great deal to both myself and Carly! As Christine says in “The Spoon Theory,” people should feel special when she spends time with them, because they have one of my “spoons.”

Thank you Christine for being such an important part of my life. You will not be forgotten and will be forever in my heart!

Love, Mary Jo (Carly’s Mom)

Bio: Mary Jo has been the primary care-giver and supporter of her chronically ill daughter, Carly, for the past 15 years. She’s cleaned up all kinds of fluids, set up feeding tube pumps in the middle of the night, and even literally slept on the floor of hospital rooms. She once spent 3 straight months in the hospital with her daughter! A “Martha Stewart” type, her “hobbies” include washing dishes, making beds and ironing – even jeans!.

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  • Melissa Valley

    I resonate with THIS! Thank you! ❤️

  • Kimberly

    You inspire!

  • Karen

    Wow this really touches me. Thank you for sharing!!

  • Stephanie Dozer

    This is beautiful, this really makes me think of all the sacrifices my mom has made for me while I have went through nearly 10 years with illness. She is in the same boat too. Mothers are amazing!! I hope one day I can become a great mother and take care of my kids through sickness and health and do it with keeping enough spoons for me too. To care for them.

  • Jen

    Wow, what an amazing story! You are an incredible mother. 🙂

  • Andrea Salmon

    WOWWWWWWWWWWWW…..that’s all I can think of……… I can’t help tears coming down my eyes…..
    Five months ago one night I was navigating through the internet while at work ( don’t tell my boss ) an interesting posting appeared on my computer screen ” Patient Services Intern- Lupus Foundation of America Charlotte “….let me just tell you that at that time I was taking a Pharmacy Tech class, working a full time job and volunteering at a Free Clinic here in Charlotte and now I was applying for an Intership…. talking about a busy person……. how did I do it??? how I found the time to do it??? only God knows because he knew I was doing it from my heart….. after reading the description I decided to give it a shot something inside me was telling me call right away to get details on the application process and right then I started educating myself a little more about Lupus….so I called…. it was around 9 or 10pm when I called and left a message inquirying about the Intern position ( crazy huh??)….. well I got a call back from Elise Neilson & Christine John-Fuller next day and they walked me through the application process. After I submitted my application I was called for an interview…… When I arrived for my interview and met them I was convinced (not being arrogant) that the intern position was mine….. I was not applying for this intership because I needed it for school or work….it was more the desire to join the Lupus Foundation to help patients and their families understand this condition and being able to reach out to those who don’t have access to all the information out there because of a language barrier (lucky to be bilingual) and to learn more about what the chapter was doing in the community….. well I was offered the position and guess what??? I ACCEPTED……
    Ok, maybe it’s getting a little boring but please allow me to get to the main point now……….
    Accepting the intership at the Lupus Foundation of America, Piedmont Chapter has been one of the best decisions I have taken in my life, and I say so because I’ve been lucky enough to meet the HEROES outside cartoons and comic books…. I know there’s a lot of haters out there who would love to be in my shoes 🙂 ……
    To you Carly, Christine Miserandino, Shelee, Beverly, Patty, Zaira and I can keep writing more names……….
    YOU ALL ARE MY HEROES!!!!!!!!!!!
    I admire you all and I can’t thank you enough for making me a more compassionate person everyday…. for showing me what a true HEROE is…..and let me tell you all that I’m planning on staying HERE!!!!! I ain’t going anywhere I’m going to stay right here with the Lupus Foundation and I’m going to tell everybody I come across about what Lupus is and Im going to invite them to meet my HEROES or even better to join the HEROES club 🙂

    XOXO

    Andrea Salmon

  • Jeanne McDonald

    Mary Jo I am blesed to know you. You are a terrific Mother and friend. Thanks for telling me about the “Spoon Theory”. I have used it many times lately. I had about with MS. I thought long and hard where I wanted to use my Spoons.

  • DiAnna Adkins

    I was recently diagnosed with Lupus and found out about the “Spoon Theory” from a friend (Laura Cooke) from Lighthouse for Lupus; a wonderful support group. Thank you so much for sharing……..this is absolutely wonderful.

    Much love and good health to all,
    DiAnna

  • liz roberts

    oh wow!!
    this has caused me to smile a lot but also has filled me with emotion, resulting in some tears.

    Mary Jo, you are such a wonderful mother and care giver. And Carly you sound like a very strong and determined young woman, you are a fighter in your battle with your illness. You both are an inspiration to us all.

    I too must start and bring the spoon theory into my life, as I have now been diagnosed with MS (in May of this year)

    Thankyou for sharing this wonderful story

    Take extra care all of you and may God bless you all
    Liz
    xxxxx

  • Mona ramsey

    Mary Jo, this was so touching. God is smiling on you for being the supportive person you are. It’s hard when you feel alone,with no one who understands. At times I feel like it’s just me and my illness but I am slowly learning how to navigate through the pain. I know Carley personally( I never unwrap my cords, remember:)) and she has already helped me more than she knows. I am constantly inspired by her and now by you as well. I am a mother whose goal is to always be there for my children no matter what. Pat yourself on the back!!! From one mom to another, you have raised a phenomenal daughter:) BRAVO

  • Judy Bleecker

    I am new to this group, but not new to my cousin, Carly’s mom, Mary Jo. As a fellow spoonie? diagnosed with at least 5 chronic and invisable illnesses, my first thought was “imagine how much energy it would take to write that letter” and then, “only MOJO could pull the spoon surprise off. Yes, she is a mother made in heaven. Carly has accomplished so many things and I hear that she has a great sense of humor. I am in tears after reading this, thank you Mary Jo for all you have given all of us! Spoon me, Judy

  • Bonny L. Whaling

    Everytime I read this story it gets me choked up…Mary Jo is an “ANGEL” from God, and I know Carly knows how blessed she is to have such a kind and loving mother. Carly has been and continues to be a fighter when it comes to this disease. She is such a lovely young lady! May God continue to Bless them both always! Thanks for sharing this beautiful story!

  • Lisa M. Eckhart

    I am so proud of my friend, Mary Jo! She is an inspiration as is Carly and Christine!

  • Heidi-Jeanne Johnson

    Headache—that’s what I have now due to sobbing after reading this amazing story. I welcome this headache with open arms though. I will also welcome every and any headache I get from here on out if it’s due to “good” tears while reading more “miracle spoon” storys. I began to chuckle (while still crying) when I saw the 4 foot spoon. Now that’s a boat load of energy. No spoon shortage there for a while! I’m going to go to the Pier One in Millbury this afternoon and pray they have a 4 foot spoon. wonder what they will think if I end up needing to ask them to order a giant spoon for me?? Wishing all my spoonie friends one hell of a giant spoon filled day! xo

  • Vickie Foster

    Smiles and Tears…My heart is full!

  • Janet Miserandino

    Thank you sooo much for your story. I am Christine’s Mom and for a long time, I was her primary caregiver too. I understand all of your frustration, and worry for your child, for no matter how old thay are they will always be your child. Reading stories like yours makes me happy and proud that Chris spends so many of her spoons on her website.