How the space-time continuum is affected by caregiving

A columnist describes the strange phenomenon she's noticed in life with HAE

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“But I’ve been gone for hours!” the central character will say.

“You’ve been gone a few minutes,” another character might reply. And no matter how much the protagonist tries to convince the other person, clocks and settings prove that they weren’t gone for more than a minute.

What movie am I referring to? “The Chronicles of Narnia: The Lion, the Witch and the Wardrobe,” “Contact,” “Ant-Man,” “Back to the Future,” “Happy Death Day,” and numerous others.

While each movie may not include that exact dialogue, the premise is the same: Time moves differently for the protagonist when they go into an alternate universe, and when they return, they’re shocked to find that time hasn’t moved at all.

I always found this concept a fun storytelling trope, but I knew it was fictional. The closest anybody comes to this experience is when they have vivid dreams while sleeping. Before 2019, if you’d asked me if I believed something like that could happen in real life, I’d probably chuckle and tell you no. It’s impossible.

At least, I used to think that.

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The confusion that comes when HAE patients feel good

By the middle of 2020, our daughter, whom we’ve nicknamed Ladybug, averaged hospital admissions every five to seven days due to her hereditary angioedema. Hospital visits had become such a way of life in our household that I’d started keeping a hospital bag with favorite blankets, pillows, and device charges ready. We were so frequently at the hospital that the classes I taught virtually thought the butterfly pattern on the ceiling was a part of my house.

“We were here a few days ago,” I often told triage. And we were warmly greeted by nurses and hospital staff who became a second family.

When our insurance company finally approved Berinert and Haegarda for home use, hospital visits became less frequent. Our lives began to settle, and we found an uninterrupted rhythm in our house.

“When was the last time she was here?” the triage nurse asked us after we’d experienced a delivery delay in Ladybug’s necessary medication.

“About a month or so,” I answered. I honestly couldn’t remember. So much had happened between hospital admissions. I was so grateful that her last visit wasn’t a few days earlier that I’d stopped counting.

The nurse typed on her computer. “Oh,” she piped up. “You all were here two weeks ago.”

No, we weren’t! Right? At least, I thought we weren’t. No matter how hard I tried, I couldn’t recall the length between Ladybug’s flares — but it couldn’t have been just two weeks.

“I’m pretty sure it’s been a month,” I argued.

“Nope,” the nurse replied. “You all were here two weeks ago and stayed for two days.”

After having almost this exact exchange numerous times over several months, I got really concerned. I didn’t just have trouble recalling this information for nurses; whenever we had to order new medication, what felt like months between infusions or preventive shots turned out to only be a few weeks.

While I wish I had the vocabulary to explain this phenomenon, I decided to rest on the idea that sometimes as caregivers, we tend to be so grateful in our downtimes that after a while, days seem like weeks, and weeks seem like months. This can allow us to feel like things are getting better.

I’ve since started documenting significant medical moments. This way, I can give an accurate account so that Ladybug’s medical team can help improve her care. After doing this for some time, I recently discovered that those hospital visits and flares are, in fact, getting further apart. And that’s something to celebrate.

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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