Tuesday, October 11, 2016

GoFundMe: Help Christine Smile

I know that this courageous young woman's Spoon Theory has certainly helped me to explain my chronic illness and fatigue to others. But it appears that Christine Miserandino is struggling with yet another battle requiring strength and courage. Read on:

Have you ever heard of The Spoon Theory? 

It's a story that Christine Miserandino wrote that helps explain what living with Lupus or any other chronic illness is like. After having been asked what it was really like by a friend – Christine grabbed the nearest thing to her – spoons (she was in a diner after all) and gave them to her friend. Then she asked her friend to describe her day. Her friend made generalizations like – getting up to pee, brush her teeth, get breakfast. 
Christine broke it down for her – first she had to get her body moving in bed, then she had to stave off the nausea in order to walk to the bathroom. Breakfast – yea, she needed to eat something – in order to take her handful of pills, but what do you fix – and eat – when you have nausea and no appetite. 
Each of these tasks takes just a bit of energy – which adds up to spoons. The more she went thru the day – the more the spoons disappeared. Before the end of the day – the spoons were gone, and like I said – the day wasn't over. 
What do you do then? 
You can read the entire essay here: 
She wrote The Spoon Theory in 2003. Since then it has been read and translated all over the world – yup – 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
This is where the Spoon Lady is today – she has lost her beautiful smile. 
Everyday, she wakes, takes her medicines and puts on her beautiful smile for the world to see. The smile that says to the world – But I Don't Look Sick! 
But Christine has had a very difficult year – and she has lost the ability to put on the smile. It is gone. Continue reading here


Unknown said...

Thank you for sharing this. I have shared it to my FB page. My heart breaks for the devastation and loss this dear brave woman has suffered. My prayers go with her.

Unknown said...

I agree, thanks so much for sharing this. If everyone helps a little, it will not hurt us individually, but it can make a huge difference for Christine! Her Spoon Theory is such a powerful tool to use in explaining the fatigue of Shogrens!

Unknown said...

Julia thanks so much for sharing this. If lots of us can donate a little, it won't hurt us, but it can make a huge difference for Christine. I love her Spoon Theory - it is a very useful tool when trying to explain the fatigue of Sjogrens.

Heda said...

I'm am sorry for her loss Jules, but she has a partner, a gorgeous child, parents on both sides who are still alive and in a position to help her. She's chosen to have implants and many of us cannot even contemplate that option because of the cost. In my book, she is still one of the lucky ones. Sorry but I feel very uncomfortable about this campaign.

linda kaserman said...

Julia - thanks so much for spreading the word about the fundraiser for Christine - every little bit helps!

Heda - I'm Linda Kaserman, I set up the fundraiser for Christine. Her partner, her gorgeous child and her parents - all have put all they can into helping her. Christine's parents credit cards are as maxed as Christine's. Even if they weren't - the time it would take someone on social security to pay off over $50,000 in medical bills is a very, very, very long time.
The dental implants - a necessity for her - she's already had a bone graft to help rebuild the lost bone of her jaw. They're hoping that the implants will stimulate more bone growth - where as without it - the bone would continue to deteriorate.
She has all on her own - researched every avenue for dismissal or negotiation with the medical bills, researched grants, state and county help, and even looked into food stamps. For various reasons these avenues didn't pan out well for her. How can you apply in person, pick up forms, etc when you're literally paralyzed with anxiety and depression?
Yes, she's lucky - she has a roof over her head (her parents house) a partner and a daughter and parents who love her unconditionally, but none of that will pay the bills nor help heal her pain, anxiety and grief from losing her child.
She's had a perfect storm of grief, pain, lupus, sjogren's and all the autoimmunes attacking her body and mind at once. It took several friends to convince her to allow us to set up this campaign - She is not the type to ask for help.
Read her story in full - She deserves some help - as do all spoonies in these kinds of situations.
Fortunately, she had friends who were able to step in and help her. There is so much more to her and her story than i can mention here. She does deserve this.
If you still feel she doesn't - that's fine, we all have our own opinions - but do me a favor - do something nice for someone that you feel does deserve something nice.
We're just over 1/2 way to our goal - but we're still asking for donations - over 1/2 of the donations have been from spoonies only able to afford $5-15 and it's added up. We're all so grateful.
Linda Kaserman
Friend, Spoonie Sister to Christine
and admin to her Facebook and Pinterest pages