All is Well
I woke to a quiet home this morning. Recent house guests left with their Pomeranian yesterday and Lily, my parent’s King Charles Cavalier, went home. While hosting added bodies and puppies for two weeks may have added to recent fatigue, opening my home proved worthwhile.
I probably wouldn’t feel that way if I hadn’t entertained such easy-going travelers. Connected by a mutual mitochondrial disease diagnosis and all that entails—medicine, doctors, odd symptoms, fatigue, etc., the mom and daughter duo and I operated on the same wavelength.
Do what you can. Let the rest go.
For instance, I can’t think of a time I’ve not showered for four days around someone I hardly knew. But after attending an out of town funeral and awards ceremony within days last week, fatigue slowed my steps. Hip pain left me hobbling. And double vision demanded extra shut eye. Between a bun that disguised my greasy hair and afternoon thunder storms that called for PJ’s, curling up unclean made sense.
However, unlike normal, I didn’t care what my guests thought. Deep down, I knew they understood, and their understanding lingers. Having grown up in a family of stalwarts who struggled to relate to my emotional soul, I still feel most whole when most understood.
That said, living with a rare disease few can pronounce opens the door for continued disconnect and misunderstanding. So, as I put on my cocktail dress for the swanky event, I struggled over which shoes to wear: the glitter tennis shoes that look dressy but leave the AFO’s (ankle-foot orthotics) exposed or the casual biker-looking boots that almost cover them.
Tangled in stress, my guest kindly noted, “You care a lot about what others think.”
Tired of facing that inner battle, I suggested other reasons for my concern. But too often my sensitive thoughts weave back to what a pastor once wrote in my Bible, “Don’t take it personally.”
The challenge lies in the fact that some days I feel far more physically discombobulated than others. And on those days—whether due to pain, eye pressure, facial weakness, or the need for braces on my legs—I lose center. Since they come and go in intensity, I’m just not always prepared for feeling out of kilter.
But learning to roll with it, to accept the bad with the good, to not take looks personally or always need to be understood, allows me to live at ease in my skin no matter the symptom that rears up on a given day.
No doubt, it helps me to hang with people who get it. To link arms with those in a similar battle. To share war stories and coping strategies. And to laugh at the entangled crazy that defines our lives.
For the last two weeks I’ve done just that and I feel more whole as a result. In time, my full cup will empty and I’ll need another long drink of connection. But not today.
Today—all is well.
About the Author: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects of mitochondrialdisease. Learn more about Susan, her latest book and many songs at: www.susanschreerdavis.com
J. Kelly Brito