Foundation for Mitochondrial Medicine

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    Foundation for Mitochondrial Medicine

    The Great Big Why

    Susan Schreer Davis, contributing writer and Voice of Hope for the mito community and all those seeking inspiration in their day-to-day lives. Follow along each week at www.hopeflies.org, and on social media.

    The nurse sounded as uninterested as my sister at a football game, “You need the results of a recent EMG?”

    “Yes…”

    “From last week?”

    “Yeeesss…”

    “The results are normal.”

    With that, all hopes of a concrete answer sank into the dark abyss of why.

    For over a decade, medical professionals have offered opinions on my health. A prominent local neurologist once watched me struggle to walk and said, “You have spasticity. You need to take baclofen.”

    He wrote the prescription and I’ve taken it ever since.

    But at least two other neurologists have since stated, “You don’t have spasticity and I don’t know why you’re on baclofen.” And their skepticism has left me feeling crazy.

    But last week I stood firm… well, almost.

    Shortly after the Emory doc asserted she had no neurological understanding as to why my legs grow weak, I asked, “Do you think it’s in my head?”

    “I don’t know,” she candidly replied.

    I sat for a moment and then said, “It’s not in my head.”

    Did I convince her? Who knows.

    While I tried to stay positive, right before I reached home, a tsunami of doubt crashed over the truths that normally ground my soul. There, on the edge of darkness, I mentally wailed, “Why do I have an illness with a name few respect or understand? After ten years of choosing hope when my legs, arms, mouth, and eyes grow weak, why can’t I have a viable diagnosis so doctors won’t think it’s in my head?”

    I didn’t ask, “Why did my husband die?” Or “Why am I sick?” Or “Why does my child have to go through this too?”

    I just wanted a relatable name.

    As thoughts careened, the name, Raoul Wallenberg, surfaced from the depths. I’d heard about him the night before, when a local Holocaust survivor shared how his family survived, in part, due to the efforts of Mr. Wallenberg.

    The Swedish diplomat saved thousands of Jews during the Nazi occupation of Budapest. But when the Red Army liberated Hungary, they arrested him along with other Nazi criminals and transported him to a Russian prison where he was tortured and later died.

    The broken man sat in squalor, and probably wondered why? Why was he punished for doing the right thing?

    I don’t know.

    But imagining his plight led me to others, which in time, turned my why questions on their head. And I found myself asking, “Why do I get to live with heat in the winter and air conditioning in the summer? Why do I get enjoy running water and plentiful groceries?

    No longer lost in the negative, I became grounded in the blessings that are mine. My emotions wobbled again after the nurse told me the EMG results were normal. But by then I knew which why questions to ask. And one by one, they carry me back to hope.

    About the Author: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects ofmitochondrial disease. Learn more about Susan, her latest book and many songs at: www.susanschreerdavis.com


    Billy Pasco

    I need hope

    Welcome Susan Schreer Davis, contributing writer and Voice of Hope for the mito community and all those seeking inspiration in their day-to-day challenges. Follow along each at www.hopeflies.org, and on FMM’s social media.

    I need hope.

    I clamber for hope. Fight for hope. Search for hope.

    Sometimes it wells up with ease. Like when the sun warms my face. Or when my cat’s whiskers brush against my cheek. Or when I indulge in strawberries dipped in chocolate peanut butter fondue.

    Life’s simple moments can stir a sweet peace that awakens hope. But I had to learn to cherish them first.

    When my first husband slipped from earth after a valiant fight against a brain stem tumor, I never dreamed mitochondrial disease would hamper my mobility within a decade. Double vision, fatigue, weak legs and joint instability require extra effort every day, every step, and sometimes, every breath.

    A few weeks ago, I needed a prescription refill. Assured it would be called in and ready Monday morning, I showed up at the pharmacy, expectant. Not only was the drug not ready, the doctor hadn’t even placed the order.

    I spoke with pharmacy techs off and on all day, to no avail. But right before closing, a pharmacist promised to solve the problem by lunchtime the next day. While good news, it meant I would have to survive without the drug for another night.

    By the time I arrived to pick up it up the next day, brain zaps from drug withdrawal left me dizzy and unsteady. When told I would have to wait another thirty minutes for the drug to be filled, I found a corner in the store and crumpled to the floor.

    Overwhelmed, I cared little about what others thought until a kind woman approached.

    “Are you okay?” she asked.

    “Yes,” I lied, “I’m just waiting for a much-needed refill and trying to pray for a pastor stuck in a prison in Turkey who’s waiting much longer than me.”

    “Do you need a sandwich or something?”

    “No,” I lied again, “I’ll be okay once I swallow the pill.”

    She looked at me unsure and said, “Well, you look really pretty.”

    Then she walked away.

    I barely mustered a thank you before the tears fell. I didn’t feel pretty. I felt off kilter. Shaken. And weary.

    Thus, her kind words in the pharmacy still resonate.

    I don’t know why many of us suffer complicated, hard lives. But I do know that when humans speak life to other humans, the darkness fades and hope rises. Maybe just for a minute. Or a day. Or long enough to carry us to the next God-wink that reminds us we’re never alone.

    Susan Schreer Davis

    About the Author: Susan Schreer Davis lives with her husband, their cat named, Eggs, and the challenging effects of mitochondrial disease. Learn more about Susan, her latest book and many songs at: www.susanschreerdavis.com

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