Wow, “The Mother of Spoonies”, almost sounds like I am starting to write a science fiction or children book with that title eh?
Well as I am sitting here on a rainy Arizona day, I was rereading The Spoon Theory, by Christine Miserandino, A lady who indeed is and should be known as the Mother of Spoonies! (Game of Thrones much?)
I consider Christine a personal friend and mentor, both in chronic illness, and blogging. In writing the Spoon Theory, She has opened up a lot of peoples hearts and minds, letting us all know that it is OK to be sick, and to talk about your illness! As many of you know, Christine has had a hard year… But I was blessed to chat with her today, which prompted me into writing.
“Christine Miserandino is an award-winning writer, blogger, speaker and lupus patient advocate. Her writing about lupus and her “Spoon Theory” of communicating about chronic illness has been featured in numerous newspapers, magazines, medical newsletters and television media around the world, as well as on her website ButYouDontLookSick.com.” From her bio, read the full bio here:
Christine was first diagnosed with Lupus, but as many of us with chronic illnesses go, they always seem to bring along friends. In her case the chronic illness friends with her Lupus are… Fibromyalgia, Sjögren’s syndrome, Raynaud’s disease and Neuropathy. Yet she still stand as a LEADER in the Chronic illness industry as an advocate, and speaker for us all. Not only do I admire her, but can only hope someday that Men With Fibromyalgia, and what we are building will have even 1/4 of the impact she has had on us all! But I digress…
Christine wrote The Spoon Theory in 2003, and this is the beginning of the term Spoonie, Hence making Christine, the “Mother Of Spoonies”. Since then “The Spoon Theory” has been read and translated all over the world! The Facebook page for Butyoudontlooksick.com/fb has over 1 million fans. The fans that are sick – well, we call ourselves Spoonies. Every day messages of thanks come to Christine for giving a way to explain the fatigue, the fog, the pain of being chronically ill. It fills Christine’s heart to know that she’s touched so many in such a meaningful way.
One of her fave quotes is
“We rise by lifting others” Robert Ingersoll
But, while many know of the Spoon Theory, who knows Christine? Where is she now? Who is lifting her up?
Well here is the truth. Christine is a Lupus, Fibromyalgia, and Chronic illness warrior. But this last year has been a hell of a ride for her and her family… When I was chatting with her today, she (who is a very private person in many ways) shared with me the thought below thought which rocked me on my heals. My Friend Christine, A ROCK, A PILLAR, A SPOKESMAN of our community…
“I have learned this year that people care much less about the girl behind the spoon theory. Than just how to use the spoon theory themselves. It’s sad. I’ve never felt more alone in my entire life. And all I ever wanted was to help others not feel alone”
We All Need help sometimes… Christine needs OUR help now! For one who has given us so much… Please click here to see how you can help “The Mother Of Spoonies” IF YOU DON’T KNOW CHRISTINE: The Mother of Spoonies, read on now… Below is an Excerpt of her current story: Read the full here:
“In March of 2016, Christine was due to deliver a beautiful baby girl named Charlotte. After suffering months of constant nausea and vomiting, weeks of renal failure, and trying to keep the baby to term, on January 26 she had a c-section to deliver her stillborn daughter. Christine and her boyfriend Ned lost a daughter, Christine’s daughter Olivia lost her little sister and Christine and Ned’s parents lost their grandchild.
“ … I didn’t even know what was going on at first and every time I. Would wake up and feel the pain of the c section, I would ask where my baby was and a nurse or Ned would have to explain all over again what happened. Ned lost a daughter too. Olivia lost a little sister. I was trying to take care of them.”
This heart breaking and soul crushing experience affected the whole Spoonie community too. Christine planned her daughters burial, instead of her homecoming.”
Now the loss of a child, is a heart wrenching and … Well I lost a child due to miscarriage… there are no words to describe the sense of loss, which I am sure is worse for the Mother. Now Christine’s health has been on a roller coaster since January, with stress adding very badly to her LUPUS and FIBROMYALGIA flares, which all of us spoonies know well and can appreciate. However adding to all of this, with the 7 months of throwing up 5-7 times a day during her pregnancy and saliva issues from Shogren’s took their toll, to the point that inwardly and outwardly Christine, The Mother of Spoonies, has lost her smile.
She has a few front teeth left, but is now facing major jaw reconstructive surgery, and a full set of dentures. According to Christine when we chatted today, she is currently living in one of the worst Flares and Pain cycles she’s ever had. Add to that dealing and doing her best to overcome the depression and grief from loosing her daughter. It’s been a constant battle to overcome the health issues, the grief and the mental health issues, the financial issues. It’s taken a huge toll on our Super Strong “Mother of Spoonies”.
Christine is finding it difficult to imagine the next day.
She feels lost.
How can we help? GREAT QUESTION! Encouragement, love and prayer sent her way are always welcome. But right now, her biggest need is financial. That is why some of her closest friends have set up a GoFundme account… “HELP CHRISTINE SMILE” Also vist her Facebook Page to follow along here:
The Mother of Spoonies, Christine Miserandino: IS SO STRONG. She’s also extremely private about her personal struggles, preferring to focus on helping those in the Spoonie community – To ask for this help from you – it’s Huge.
At the end of the day, Christine is a Spoonie too and after pouring her life into helping us all, she needs us to help her by giving a little back!
Christine, her family and her closest friends, would be forever grateful for any financial help that you can give. She thanks you for the support over the years and for the support that you can give to her now. It means everything to her.
Norman Hanley, Christine Miserandino, and Friends of Help Chris Smile!
P.S. May you have an abundance of Spoons!