Egg Crackin' for Mitochondrial Disease

As I slipped out from under my soft blue sheets Monday morning, Don said, "There's an article in The Wall Street Journal about charities trying to copy the ice bucket challenge." (Charities Seek Their Own Ice Bucket Challenge)

"Oh," I replied, half asleep. 

Uninterested, I walked on partially numb ankles straight to the coffee button.

By days end, I realized how big this whole thing was. And  that I had unknowingly put myself out there as one of those "copy cat" kinds with a video I made the day before. The one where I cracked an egg on my head in honor of Mitochondrial Disease. (See below!)




Yesterday, someone suggested I was insensitive to promote mito instead of ALS. As I thought about that, I concluded a few things:

First, I spent the end of last week preparing and executing a massive garage sale. I had no idea ALS awareness was exploding across the internet until Saturday night when I crashed into bed, surfed FB, and saw my friends Bonnie and Lu dumping a bucket of ice on their heads. Since Bonnie has ALS, I knew something was up. When I ran across a video with Bill Gates doing the same, I was intrigued but still unaware just how big this thing had grown.

Second, as I got dressed for church the next morning, I chuckled at the thought of cracking an egg on my head for mito awareness. As I explained in the video, my family has a long history with egg cracking. You can still link to a story I wrote with the explanation on a Focus on the Family web site here: A Thing of Beauty.

Recent photographic evidence: 

Cousin Jessica begged to  re-start our family "crack-an-egg-on-your-head-on-the-last-day-of-school-tradition" at Nathan's 20th birthday party. It had been a few years. It was time. March '12

She triumphed!

Sam had no idea what was coming in this photo at his high school graduation party. May '12

He may look forlorn, but he was just soaking the moment in before the mad pay back chase began.

Nathan went for pay back at his 21st birthday party! May '13

And he succeeded!

And this is me last May with Olivia and Makayla on their last day of school this year. They needed fun and I needed fun and so I swore to them that cracking an egg on their head would enhance their life. 

As the idea churned, I ran into Bonnie and Lu as we walked into church. We shared a good laugh over their video and sat a row apart. When the service ended I turned to Lu, Bonnie's caregiver, and said, "I think I'm going to crack an egg on my head for mito today!"

Her eyes sparkled big as she replied, "If you do it, I'll do it too!" 

The game was on. The video up before my Sunday nap. And it made me smile. Big.

Lastly, my body continues to challenge me. I was surprised with double vision in March. By June, jaw ligament laxity caused my throat to tighten when I sing. Right hip pain can leave me weeping on any given day if I'm not careful. And ongoing muscle and joint discomfort impedes forward momentum, daily. 

While symptoms can be overwhelming, what really baffles me is the number of health care professionals who have NEVER heard of mitochondrial disease. A GI specialist once apologized to me for skipping the chapter in his book about mito. He'd just re-taken his board certification test and didn't even look the information over. In over 20 years of practice, he'd never met anyone with mitochondrial disease.

He's not alone.

I'm used to it now. But part of the burden of living with mito is knowing that most doctor's have no idea how to treat you. So you hunt. You search. You give up. And then try again. Some will go out of their way to help. Others, like a neurologist I once encountered, flatly state, "I don't do mito."

It's really complicated.

So if I can smack an egg on my head and ride a spin off wave from the ALS ice bucket tsunami, then it's worth the slime and extra laundry.

I'm not trying to compete. But rather join in the conversation. Make an unknown word relavent. And maybe make life a smidgen easier for the countless ones who fight for energy every day. 

I'm just doing it the egg crackin' way.