Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

Part of Me


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

My niece, Jessica, and I stood on opposite sides of Bonnie’s bed. There, we sang as she took her final

breath. In her last year of nursing school, Jessica had spent the previous six months serving as my friend’s caregiver. So, we’d both watched as her body succumbed to the sobering effects of ALS.

I met Bonnie in a Bible study. As my body slowed due to mitochondrial disease, Bonnie sat unable to move her arms. Yet she smiled and laughed through it all, drawing me in. The more I learned, the more I was intrigued.

After her husband died of pancreatic cancer, Bonnie’s sister-in-law, Lu, drove her home from the funeral—and never left. The unexpected life change meant Lu left her family and friends and embraced the caregiver’s role without any formal training. For the first few years they traveled and made a lot of memories. But in time, the road trips and cruises came to an end. And caring for Bonnie alone became too much for Lu.

Knowing my niece lived close by, I suggested they meet. Soon after, Jessica spent several days a week helping with Bonnie’s care. Drawn in with a similar intensity, Jessica didn’t hesitate to give up a night’s sleep and administer the much-needed morphine throughout Bonnie’s last night on earth.

While Lu and I rested, Jessica stayed by her side, listening to respirations and alerting us of changes. Barely 20-years-old, she entered the depths of care with rare maturity and grace. So, I wasn’t surprised when she was awarded outstanding nursing student of her class when she graduated a few months later.

Loving people well who are in the throws of chronic or terminal illnesses requires rare empathy only some can extend. Thankfully, many of those who serve in the nursing field exhibit that kind of understanding and concern. Without them, I might have truly gone crazy by now.

While doctors often have the last word, good nurses ease the way. They smooth the rough patches that single focused perspectives create and listen with an awareness busy doctors tune out.

Jessica now works the night shift on a cardiac ICU floor and regularly offers care during a patient’s last hours. The constant intensity and demands overwhelm even the best at times. But Jessica and her fellow nursing comrades show up night after night and week after week to ease people’s suffering—no matter their race, religious background, or political views.

I recently spoke with the husband of a chronically ill woman. He said what I often think, “It’s like we live in an underworld.”

“I know!” I interrupted. “I feel that way a lot—like the reality of what we go through is invisible to most of those around us. No matter how hard we try to communicate the issues.”

Bonnie, Lu, and I connected in a unique way because we lived in that underworld together. I fed her dinner once a week and they drove me to post op appointments after numerous surgeries. But when it all got too much, Jessica stepped in and offered nursing care to get them through the darkest hour.

Jessica spoke at Bonnie’s funeral and I sang. While I don’t see my niece a lot these days, the memory we share forever ties our hearts together.

And Bonnie? Well, we all know she will forever be Part of Me

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

 

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