Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

What I Wish They Would Say


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

In a perfect world, nurse advice phone calls wouldn’t go the way mine did this week. And better yet, I wouldn’t need a nurse’s advice because pain management wouldn’t be so elusive—or even necessary.

No one would hurt.

But we all hurt in one way or another and our hurts collide like bumper cars in an amusement park. The jolt and shock of the unexpected hit isn’t always easy to shake off. So, as I’ve recovered this week, I’ve thought about a few things I wish society knew how to express to those of us who hurt.

A few examples…

  • “I see you walking with that walker today. That can’t be easy. Man, I’m impressed that you’re out here living life. That must take courage.”
  • “It sure seems that most people your age don’t deal with as much adversity as you do. I respect that you haven’t given up and grown bitter. How do you keep a positive outlook?”
  • “Last week when I saw you out, you weren’t using your walker. It must be hard to have to use it some days and not others. Do you mind helping me understand what makes your body strong on some days and weaker on others?”
  • “You look really nice today but I saw you using a walker last week. How’s everything going?”
  • “I heard you need another surgery and I know you’ve had several others. Can I bring you a meal this time? Or is there another way I can help out while you recover?”

I’ve considered trying to script some comments for the nurse, but that call was so over the top, I don’t even want to try. Cause looking back, it’s just been one of those weeks—the kind where too many voices echoed loud, culminating with the one who explained, “I’ve been a nurse since 1978 and I normally don’t have this much trouble communicating with a patient.”

Since I’ve been a patient for over ten years, and normally don’t burst out in tears on an advice nurse call, I could hardly form words after her comment.

Still stewing, I woke in the middle of last night. Moved to the living room floor where padded carpet holds my frame secure. And rolled from side to side… until, I remembered the other voices I heard this week.

Like the young father who has a ten-month-old twin who’s still wearing three-month clothes. A rare genetic disorder inhibits the baby’s growth, leaving him far behind his brother.

Or how about the veteran diagnosed with cancer in his leg who was told he had to wait ten months to have it taken out. I can’t even imagine what he felt.

Then there’s the 75-year-old widow runs an Air B& B in her home to help pay the bills. And the talented high school singer who doesn’t have the cellular strength to be in the school musical.

As I prayed for my new friends in the dark of night, my heart settled and I drifted to sleep. For, sometimes, simply rewriting the narrative in our heads helps to settle the echo of voices that have failed us.

So, I’ll close with this from a voice dripping with empathy:

  • “I’m so sorry you’re hurting. I heard you explain that you can no longer wear you’re right AFO due to the pain it’s causing in your hip. And that pain is worse than it was just last week, meaning you’re concerned that the tear in your hip is getting worse. I’ll be sure to pass that on to the doctor and someone will get back to you soon. Thanks for choosing us for your health care.”

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
Priscilla Du Preez

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