Thursday, August 21, 2014

Is the Ice Bucket just a Sandwich?

Disclaimer...I wrote two bad words.  Also, this is not a criticism on the support of ALS or any other disease.  Just some food for thought.  

We are all seeing floods of friends, children, celebrities, politicians all dumping ice on their heads to create awareness and funding for ALS.  It is neat to see the ALS community highlighted and supported.  It is an awful disease, and I hope it does help.  I don't know the pain of this disease, but I can imagine, and I am certain the suffering is overwhelming.

At the beginning of the summer we went through a marriage skills class.  In the class we were shown this video.  It is only two minutes, but SO good. You must watch it for the rest of the post to be meaningful.

So, is the ice bucket just a sandwich?  In the wise words of Gabriella Miller, a 10 year old who died of brain cancer, awareness is bullshit.  Without any helpful action, all the talk is a bunch of bullshit.

I confess, my heart aches just a little every time I see someone dumping a bucket of water on their heads.  There are videos of dumps gone wrong.  We laugh.  We giggle.  I think of my friend who is bedridden by a condition developed during pregnancy causing extreme nausea and vomiting and all the WANTED babies who are aborted because the mother can not endure the torture.  I think of two friends whose daughters have brain abnormalities, and their daily lives are full of complete care of their girls.  I think of children ruthlessly beheaded.  I think of couples mourning the months and years ticking by, heartbreak every 28 days.  I think of a little boy with spina bifida.  I think of Esther.  I think of people whose bodies are wasting away due to ALS.  Oh, it hurts.  I want ice buckets for all of these people.

We are fickle.  I am fickle.  We forget so quickly.  But the ALS community, the cancer community, the Hyperemesis Gravidarum community, the neurological defect communities, it's not a fad.  They are often barely surviving, quietly enduring their assignment, wading a confusing and still frightening journey in the aftermath.  It's not all over.

The thing about empathy is it's so hard because we have to willingly choose to hurt.  Friends, it's not a giggle after a dump of water, and I really do hope that each of you who have chosen to dump ice on your heads are giving the donation to back it up.

We have had many faithful supporters and prayer warriors for our family.  We are incredibly grateful.  When Esther was first diagnosed there were outpouring waves of love and support.  As time ticked on, the tide receded.  There are small laps of refreshing water from time to time.  We've moved away from the water's edge a bit, but the sunburns and sand blisters are still there.  We look around knowing that we had been surrounded by people who cared, but also feeling so alone.  The wave was gone.  No more ice buckets.

Not every need can be embraced, and I understand that.  At the same time, I'd like to offer a some ways to meet others down in that deep, dark hole.

1. You don't have to be the hero.  A quick email or text to let someone know you're praying for them or thinking about them is a healing salve.

2. Ask if they'd like to talk, let them know it's not a burden.  You don't need to have the answers, just a listening ear.

3. Physical needs are many.  We are actually pretty good at meeting those, keep that up.  Don't forget that many would choose a emotional care over a meal.

4. Share that you're aching with them.

5. Encourage them to keep going and offer to hold their hand.

September is childhood cancer awareness month.  I stocked up on gold ribbon after Christmas to tie around mail boxes and front yard trees.  We'd love to send you some and hope you'd choose a charity supporting childhood cancer to donate, write a note to your member of congress, or do something nice for for patients or caregivers in a hospital near you.  I'd be happy to give recommendations.  My sister, Robin, is donating all of her earnings for the next two months to St. Baldrick's and Brent's Place.  Read about it on her business facebook page.

Most of all, move beyond an impersonal bucket of ice water.  Crawl down that sacred hole and thank your hurting friend for sharing their heart with you.