Foundation for Mitochondrial Medicine


Foundation for Mitochondrial Medicine


Five weeks have passed since my back fusion. While my legs seem far more stable than before, my ankles swell like baseballs by day’s end. Ice packs might help, but since I just noticed the problem a few days ago, I haven’t opened my freezer yet.

So, when friends ask if the surgery helped, I reply, “I’m cautiously optimistic.”

From past experience, I know that by fixing one part of my body, another part often responds with annoyance. So, months will have to pass before I’m confident the leg stability will hold.

That said, now that I can leave my ankle-foot orthotics (AFO’s) on a bedroom shelf, I’ve pulled out my favorite boot cut jeans—the pair I thought I’d never be able to wear again. When I brought the AFO’s home last fall, I discovered I couldn’t wear the jeans over or under the braces. Bummed, I reconstructed my wardrobe. Bought several pairs of lace up shoes (required by the braces). And settled on a somewhat different style—never thinking I’d ever be able to go back.

But here I am, walking like a normal person, able to wear whatever I want, including my rider boots on occasion.

Talk about change! Last fall I thought I would need AFO’s the rest of my life. Now, a year later, I’m wondering if I’ll be able to climb Kennesaw Mountain again someday. My ankles will have to stop swelling, but perhaps after a few months of use, they’ll settle into my new stride.

And as the New Year begins and I walk into my future, The Foundation for Mitochondrial Medicine will be doing the same. After years of hard work and extraordinary strides, the board has opted to merge with UMDF, aka. The United Mitochondrial Disease Foundation.

Together, the two entities will be stronger and more able to forge a path toward a cure for the many who suffer. Their proverbial ankles may swell a bit in the process, since change never comes easy.

But I’m more than cautiously optimistic for the future of our mitochondrial disease community. In fact, I’m confident that together, these groups will accomplish more than if they remained separate. It often works that way.

Today, I’m wearing my gaudy glitter tennis shoes which I’ve avoided for almost a year. I let my hairdresser style my hair in a brand-new way. And I’m cruising around town in my sporty red car which I bought after trading in a white van a few months ago.

And when I head into a nursing home to accompany a small choir in a few hours, my walker will remain in the car. And I’ll walk tall, without looking at the ground, fighting for balance.

Change can be good. It can also be a bit uncomfortable. But when you push through the discomfort, the overriding growth leads to places you never dreamed.

So, I say, “Bring it on. Let’s embrace the change. Pull out some ice packs. And walk on into the New Year. Ready. Excited. Expectant.”

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:
Ross Findon

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