Let’s Give Them Legends to Talk About

As a writer, I can’t help but get excited about a good legend. No, not the campfire kind that seeks to terrify children as they stare off into the night. I’m talking about the stories that start as true but become legends when retold, as additional elements make them more fantastic. To me, a good legend does two things: It tells a compelling story and teaches a great lesson.

Take the legend of Casey Jones. He was an actual railroad engineer known for his masterful control of freight trains. After tragically dying in a collision, storytellers immortalized him through tales of speeding locomotives and Western mail delivery. Maybe the lesson here is to be in the right place at the right time.

Another legendary story is the retelling of Johnny Appleseed. The real man, John Chapman, meticulously planted trees to grow tart apples for specialty drinks that were popular then. When he died, however, he became a man wandering the country, growing “eating” apples with his trusty pot as a hat. The Appleseed legend teaches how planting small seeds, literally or figuratively, can make a difference.

But my favorite legend, which is lesser known, is about the oak beams at New College in Oxford, England. Legend has it that in the 1800s, the large beams in the ceiling became infested with beetles. When the administrators fretted over how to replace them, they called the school forester.

When the older man arrived, he let the worried administrators know that the original architect, when building the school in the 1300s, foresaw the issue of infested beams and planted the forest behind the institution. He revealed that each forester who had come before him was told to only cut the trees if it was time to replace the beams.

Like the other stories, this one is more myth than truth. But it’s often used when people want to teach a lesson about planning by anticipating a problem in the future. It’s a lesson that I finally learned.

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When our oldest daughter, whom we lovingly call Ladybug, was officially diagnosed with hereditary angioedema (HAE) in 2021, we were somewhat familiar with the emergency medication Berinert. A few weeks later, a fantastic nurse came to our home and trained us to administer the infusion.

After a rather complicated process to finally get the medication delivered to our home, we were excited because we thought access to the medicine would eventually end our numerous trips to the hospital.

Unfortunately, that wasn’t the case. Because, at the time, Ladybug’s preventive medication was weeks from approval, our only guard against her flares was the Berinert, a defense that only lasted a few days.

By March 2021, I was averaging administering a Berinert infusion once a week. And because we would only get two doses per delivery, hospital visits were imminent when we were stuck between medication deliveries.

Finally, after several frustrating weeks of home infusions, ordering refills, getting stuck between deliveries, and ending up at the hospital, we hit a lull where Ladybug seemed to be doing OK.

“You should order more Berinert,” my sister said over the phone.

“But she’s fine,” I reported.

“But a flare is coming eventually,” she retorted. “Order it now when you don’t need it.”

Admittedly, I was slightly upset at what came off as pessimism. But she was right. A newly diagnosed adolescent without preventive meds was going to flare up again.

So instead of calling for the meds when a flare started and waiting for the overnight delivery to arrive, we started ordering before the flare, saving us time and headaches.

Eventually, we did receive Ladybug’s preventive medication. But while that came as a relief, we always have a safe amount of Berinert in our home medical refrigerator, just in case. And often, that “just in case” pays off.

Having enough medication on hand as a caregiver isn’t necessarily the stuff of legends. But years from now, when Ladybug is talking about her HAE, her parents being prepared is something I hope she likes to talk about.

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.