“He feels betrayed,” I told my student as she sat down in her chair. “So there are different emotions that your character has to feel once he realizes he poisoned her.”

My actress nodded in agreement and repositioned herself to repeat the scene. It was Shakespeare on Tuesday in the acting class I taught at a local private high school, and the students were doing a phenomenal job performing the final scene from “Hamlet.”

Before I could shout “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 school (whom we affectionately call Ladybug).

I already knew how the rest of my day would go: the nurse would be on the other end to let me know that Ladybug’s face or lip was swollen. I would tell the nurse to give me about 15 minutes, put a senior in charge of the rest of the class, rush to reception to let them know I had to leave, then rush back to Ladybug’s school to retrieve it.

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

recommended reading

Meanwhile, Ladybug’s hereditary angioedema (HAE) had become more difficult to manage. We averaged hospital visits every five to seven days. The ER administered Berinert, admitted her to the pediatric floor, stayed to make sure the medication was working, then released her after three days. Although we hoped for relief, the only thing I gained was loads of work excuses from the hospital.

In February 2020, during the week leading up to production, I hoped our family would have a week without a hospital. My students had been in rehearsal for 12 weeks, and I wanted to make sure they could play their show with me there. Amazingly, 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 classroom learning and theater performances, but was grateful that I didn’t have to worry about “missing work” to take care of Ladybug.

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

Deep down, I knew I couldn’t stick to my work schedule while taking care of Ladybug. Being a caregiver to someone with a chronic illness can sometimes turn into a 24/7 job. But I was definitely beyond that point.

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

Along with having moments of worrying if I would ever return to normality 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 really loved and missed. I was afraid of not being able to relive my passion.

Yet, during the years away from the classroom, I have 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 started to feel less like the thing controlling our lives and more like something we lived with.

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

As caregivers, we can become absorbed in the daily care of the person we love. However, it is crucial to stay encouraged during these times as we seek to find spaces where we can embrace our own passions.

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