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Holiday Heroes, a love letter

Holiday Heroes, a love letter: article about the courage it takes to survive celebrations when you are disabled or chronically ill. #spoonieThose with chronic illness, chronic pain, and disabilities are all heroes to me. I know yesterday was hard. The holidays are always a challenge no matter where on the spectrum of disabled you are, celebrations push us to our limits.

We mentally feel pushed to be up and feel grateful or in the spirit of the season. When pain and illness bombards our thoughts constantly, at times it can feel like a mountain to climb to find a hint of the same holiday spirit we once felt. Physically, we are pushed to do the things we really want to do like spend the time with the people we most want to see, bake, shop, go to sporting events, etc. Some in the “Spoonie” community cannot leave home any longer or their illness is such that they are now confined to a bed, yet they still find ways to express gratitude and the spirit of the season (heroes).

Many push to try to do things we’ve always done despite our declining health like cook, or play a sport or game with everyone else. Even though I’m confined to a bed in a back room while the family is having dinner and festivities, this year I pushed myself to change into something cute. Honestly, changing clothes took away from my energy and added to my pain; I know I could have used those spoons to spend more time with a loved one later on. When I was still able to cook, I overdid it in the kitchen and my pain would spike. The truth is, some of our actions aren’t for other people, some things we do are just for us- and it’s healthy! I have spent the last few holidays either in days old pajamas or in the hospital, so changing clothes helped remind ME of who I used to be. And I’m so grateful I had some extra spoons to do something so frivolous this year and still have some quiet moments with a few loved ones as well.

I know spending time around your family takes so much courage for fear of getting bumped and pain skyrocketing, eating a bite of something that triggers your body to become inflamed, or an unexpected noise setting off a migraine or cluster headache- these are some of the sacrifices you make for LOVE. You are brave and you are warriors. If you always listened to the will of your body, you may never open your eyes each day. Your body tells you NO!!! But your heart calls. Your heart is always stronger. And I admire each and every one of you. You teach me courage. During the holiday season, we make many sacrifices: trading spoons for love of others and longing for who we still are inside. Balancing emotional needs and physical needs. Always juggling.
That is why those with chronic illness and the disabled are my heroes.

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“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher

Articles to Reinvigorate your Spirit:

“Quiet Strength” by Choosing Hope

“The Deepness” by A Beautiful Life with Cancer

“Through it All” Poem by Mum C.

“Is Jesus Enough to get you through the Lonely Moments?” by Rest Ministries

“Square Plates are an Abomination on the Face of a Dying Earth” by Snotting Black

Cancer Kids = TV Gold?

Christopher Kula Crusade for Childhood Cancer Awareness by #abodyofhope blog | "Cancer on Television" article

Cancer, how romantic! Doesn’t everyone want cancer? No?? Didn’t you love that movie about it? What about the new TV show with the cancer kids? Didn’t you read that funny, sexy book about the girl and guy who both had cancer? Isn’t cancer so super in style right now? Well, all these shows and books sure make it seem that way.

That’s right folks, cancer is hip. Young, pretty, cheekboney, fancy hat-wearing cancer: where you always have a boyfriend,  you aren’t really THAT sick, and all your friends come to visit you, showering you with attention. Doesn’t that sound like fun? Never: throwing up all the time-cancer, face and body all puffy because you are so bloated from the meds, surgeries, spinal taps, bone marrow transplants, spending so much time in the hospital your friends get tired of showing up- cancer. Oh man, but that sounds more like the depressing kind of “sick” and that’s more of a bummer….. We like seeing the attractive, uplifting, hopeful kind of sick people who are more like saints than sick.

Sounds pretty silly when you say out loud, huh? Even though these stories are all fictional and can bring some amount of awareness, it’s really important to remember: THEY. AREN’T. REAL.

A REAL story is my friend Chris who is fighting Leukemia for the second time in his 14-year-old life. He was just a little kid the first time he went into remission and fought long and hard back then when they celebrated his survival. At 13 doctors told him his monster had returned with another 3 years of treatments. THREE MORE YEARS!!! He has been nearly living in the hospital with REALLY not fun and definitely sick-making, often painful treatments, sometimes surgery, missing his freshman year of high school: Cancer.  His parents are in it with him for the ride. Chris is a dope guy and would definitely be a STAR in his own blockbuster movie, but we don’t want the movie to be about cancer!

Christopher's Crusade. Fight like a kid | Cancer on TV article #Leukemia #childhoodcancer #abodyofhope

Any of us can only really imagine what that would be like growing up. What were you doing when you were 14?

I’m guessing it isn’t like summer camp as portrayed on a recent TV show. And it’s probably not like making a wish so outrageous you can fly out of the country with your funny sexy cancer girlfriend like in a popular book/movie.

This month is Childhood Cancer Awareness Month. If you want to do something to help Chris, it would mean so much to him and to his family if you just Like his Facebook page Christopher’s Crusade. And if you do, you can ask Chris what he thinks of these shows and movies, too.

Share what you think of modern cancer fiction in the comments section. How do you think it effects our awareness?

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