Embracing the differences in the ways we provide care

“I’m sorry, you can what?” the person asked me.

The question made me pause.

At a dinner years ago, I found myself conversing with someone who’d seen a few of my plays. Admittedly, I was drawn to the conversation because, as a playwright, I rarely get to talk about my creative process. At the end of a show, the audience is more enthralled with how the actors portray their roles, not how the author came up with them.

I was ecstatic to explain how my process begins, what I do about writer’s block or fatigue, and how I “release” the play from any further editing or additions so it can be performed.

“And how do you capture the uniqueness of your characters?” the person asked.

“I can hear their voices in my head when I write,” I replied.

Recommended Reading

November 24, 2023 Columns by Danita LaShelle Jones

The seventh sense that comes with caregiving for our daughter

I wasn’t looking at the person when I made the statement. However, their immediate silence drew my attention to their face. There was a mixture of confusion and — horror?

The next half of our conversation delved into a debate about the “inside of my head.” I spent most of the conversation trying to convince them that while I wasn’t “hearing voices,” I did, in fact, hear voices when I wrote or read. My conversation partner tried to convince me that while they don’t hear anything, they still comprehend everything when reading silently.

What I can do is commonly referred to as “subvocalization,” an ability many people possess. However, because I was talking to someone who’d never done it, I tried to convince them that what they experienced wasn’t “normal.”

Looking back, I realized I was wrong in my assumptions about the other person.

What’s odd to one makes sense to another

When our daughter, whom we lovingly nicknamed Ladybug, was diagnosed with hereditary angioedema (HAE), we were given the option of being trained to administer her medication at home. While her preventive medicine, Takhzyro (lanadelumab), was a subcutaneous injection, the emergency medication, Berinert (human C1 esterase inhibitor), had to be administered intravenously.

At the time, Ladybug was not a fan of needles. Since preschool, she’d made quite a name for herself in the local pediatric emergency room — so much so that when we arrived and the medical staff knew needles would be involved, we got a private room with the door closed. Because of that, and her initial discomfort with medical spaces, I jumped at the chance to make her more comfortable by administering the medicine at home.

“You stick her?” another caregiver asked me when we were casually talking about HAE. She marveled at the idea that I, a writer with no medical training, was doing what nurses usually do. On the other hand, I was shocked that with her loved one, she wasn’t.

Before I commented on how odd it was, I thought back to my subvocalization debate. I failed to see then that if reading and retaining information were the goals, the process of arriving at them didn’t matter.

It reminds me of something I heard singer Janelle Monáe say: “We don’t all have to take the same coordinates to get to the same destination.”

It doesn’t matter if my caregiving methods differ from others. If the goal is to make the journey of our loved ones a little easier, we’re all succeeding.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.