The Importance of Finding Space for Your Passions

Although caregiving can be demanding, self-care is crucial

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“He feels betrayed,” I said to my student as she sat in her chair. “So there are different emotions your character has to have once she realizes he’s poisoned her.”

My actress nodded in agreement and repositioned herself to start the scene over. It was Shakespeare Tuesday in the theater class I taught at a local private high school, and the students were doing a phenomenal job executing the final scene of “Hamlet.”

Before I could yell “action,” my phone vibrated against the table. At first, I hoped it was a random telemarketing call or my best friend, who often forgot my teaching schedule. Unfortunately, it was my daughter’s (whom we lovingly call Ladybug) school.

I already knew how the rest of my day would go: The nurse would be on the other line informing me that Ladybug’s face or lip was swelling. I would tell the nurse to give me about 15 minutes, put a senior in charge of the rest of the class, rush to the front office to let them know I had to leave, and then speed to Ladybug’s school to pick her up.

This scenario had become so common that my students almost anticipated it. However, their patience with having to share their teacher with unexplained emergencies spoke to their impressive maturity level.

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What to Do When You Don’t Know What to Do

In the meantime, Ladybug’s hereditary angioedema (HAE) had become harder to manage. We were averaging hospital visits every five to seven days. The ER would administer Berinert, admit her to the pediatric floor, stay to ensure the medicine worked, and then release her after three days. Although we were hoping for relief, the only thing I gained was stacks of work excuses from the hospital.

By February 2020, during the week leading up to production, I hoped our family would have a hospital-free week. My students had been in rehearsal for 12 weeks, and I wanted to make sure they got to perform their show with me there. Surprisingly, it happened! But the Monday after the show closed, Ladybug was back in the hospital.

Three weeks later, I had mixed emotions when the world was quarantined. I was devastated by its impact on in-classroom learning and theatrical performances, but I was grateful that I wouldn’t have to worry about “missing work” to take care of Ladybug.

Yet, even though I was teaching virtually, Ladybug’s hospital visits were so frequent that my students thought the colorful hospital walls and painted ceiling butterflies were decorations in a room at my house.

Deep down, I knew I couldn’t sustain my work schedule while caring for Ladybug. Being a caregiver of a person with a chronic illness can sometimes turn into a 24/7 job. But I was definitely beyond that point.

By the end of the 2020-2021 school year, I chose to resign. Yes, we had answers. Yes, we had the proper medications so Ladybug’s HAE could be more controlled. However, appointments still had to be made, she was still sick at home often, and we still experienced occasional hospital stays, which averaged about three to five days a month.

Aside from having moments of worry if I would ever have normalcy in other parts of my life, I wondered if I would ever be able to teach again. While I was still consulting and writing, teaching was something I truly enjoyed and missed. I was scared I wouldn’t be able to experience my passion again.

Yet, during the years away from classrooms, I witnessed leaps and bounds in Ladybug’s treatments. A nurse trained me to administer emergency medicine at home, and we found support in other organizations that connected us with help and resources. HAE began to feel less like the thing controlling our lives and more like something we were living with.

There are still occasional calls from the school nurse. There are still hospital visits (although they are fewer and farther between). But I have found a space to return to teaching in our otherwise busy lives — now as a college professor.

As caregivers, we can become consumed with the day-to-day care of the person we love. However, staying encouraged during those times is crucial as we seek to find spaces where we can embrace our own passions.

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.


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