Discovering the importance of writing down explicit instructions

Whether you're dealing with gremlins or angioedema, clarity is crucial

Written by Danita LaShelle Jones |

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“But the most important rule … never feed him after midnight.”

That was part of the ominous and infamous instructions for owning a mogwai in the 1984 thriller “Gremlins.”

In the movie, Billy receives a pet for Christmas that comes with confusing and complicated verbal instructions. The cute little creature, ultimately named Gizmo, can’t be in direct sunlight, can’t get wet, and can’t eat after midnight.

In classic ’80s movie fashion, none of those instructions are adhered to, leading to horrific, fatal, and sometimes humorous consequences.

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As a small kid, I was terrified by that movie. Because I was afraid of the slimy monsters that appeared when all the rules surrounding Gizmo were broken, I didn’t focus on Billy’s inability to follow the directions. But as I got older, I began to overanalyze the older man’s instructions, including the most controversial one: not feeding Gizmo after midnight.

I don’t know who asked this first, but many people on the internet have wondered whose midnight Billy was supposed to follow. It’s always after midnight somewhere, right? And because 6 a.m. is technically after midnight, when does the rule cut off?

Of course, the circumstances are fictional, but as I’ve gotten older, I’ve realized that sometimes tragedy can be avoided when the instructions a person receives are much clearer.

Taking out the guesswork

Recently, I traveled to South Africa for work, and my husband came with me. Because three of our four children had to stay home to attend school, my sister Gina, a board-certified physician, flew in to take care of them for two weeks.

Under normal circumstances, caring for three teenagers can be arduous. But when you add caring for our oldest daughter, whom we lovingly refer to as Ladybug, and who lives with hereditary angioedema, it can add more to a temporary caregiver’s plate.

“I just need you to write down everything that I need to know,” my sister mentioned over the phone, “not just about Ladybug, but for the twins also.” At first, I thought about jotting a few things down for her and leaving them on our fridge. But after thinking about the vague instructions from the “Gremlins” movie, I immediately switched tactics.

After a few hours on my laptop, I created the “Caring for Our Amazing Kids” virtual manual. It includes detailed information on school pickup and drop-off, doctors and specialists, allergies, safe restaurants, color-coded medicine charts, and tips and tricks for navigating the city and getting to their various activities.

In the “Medical” section of the manual, I included clickable YouTube links on how to reconstitute Berinert (human C1 esterase inhibitor), when and where to administer Takhzyro (lanadelumab), recognizing prodromes, and even detecting the first signs of flares.

Even though my sister and I have talked about Ladybug’s care at length, because my husband and I were going to be a 16-hour plane ride away, I wanted to take the guesswork out of Gina’s temporary assignment.

But in doing so, I realized I’ve created something else.

Now we have a detailed document that allows us to remember everything we need to know about our kids at the touch of a button. And why is that necessary? Because sometimes life gets in the way of recalling important information. Sometimes we may need to tag-team people in our village to help when the two of us need to be in three places at once.

In an effort to avoid catastrophe by leaving explicit instructions, I managed to create a reference that will continue to be a lifeline whenever we need it.


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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