A near-death experience makes holidays look a little different

Halloween was extra special this year for a columnist and her family

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by Shalana Jordan |

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

Halloween is one of my favorite holidays. Every year, my family dresses up in themed costumes to go trunk-or-treating and door-to-door candy-grabbing. But in 2020, I had no idea if something as simple as trick-or-treating was ever going to happen again for my family.

That year, most of the world experienced some level of lockdown due to COVID-19. So future public events were already in question. But in September, my whole life changed when I spent two months in the intensive care unit (ICU) in multiorgan failure and nearly died.

An asymptomatic bout of COVID-19 had triggered a rare disease called atypical hemolytic uremic syndrome (aHUS), which caused permanent damage to my kidneys, liver, heart, and uterus. When I finally left the hospital at the end of October that year, I was dependent on chemotherapy and dialysis.

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Because of all of that, I was incredibly weak — so weak that I couldn’t even step onto a curb without assistance. I was shocked and mortified at how much muscle mass I had lost. No one prepared me for how common it is for patients to lose about 20% of their muscle mass after just 10 days in an ICU.

I fell a couple of times during the first two months of my illness: once while trying to step onto a curb at the hospital, and again halfway through my hospital ordeal, when I was released the first time. (I subsequently punctured my liver during that fall.)

When I was finally released from the hospital for good, walking anywhere was a challenge. Climbing up and down steps was as daunting as traversing Mount Everest. My legs would shake and cramp. I tried to rely on my arms to pull me up stairs via the handrails, but my arms were weak and covered in bruises. I had to crawl up most stairs because I lacked the strength to lift up my weight.

Going down steps was even scarier. Each step was like walking on ice — at any moment my legs could (and did) give way. I had to inch down steps one at a time on my butt. Then I needed help to stand because I was too weak to do it from a seated position. It made me realize how many simple tasks I had taken for granted before all of this.

The first ‘normal’ thing

It also made me wonder what we would do for Halloween. I didn’t get to see my children the entire time I was hospitalized, due to COVID-19 restrictions, so it was important when I got out to make Halloween as “normal” as possible.

Oddly enough, COVID-19 helped a little with this. Door-to-door trick-or-treating was canceled, which took a little pressure off me because I didn’t have to walk.

Instead, we went to a friend’s farm and hid candy all over it. Then my children ran around in the dark with glow sticks, hunting for candy. We all dressed as “The Avengers” that year, including Grandma.

Trick-or-treating that year was the first “normal” thing I got to do with my children after almost dying, so it holds a special place in my heart. One can only imagine how surreal it was this year to be able to craft our matching costumes without worrying about COVID-19 or anything else. We went as Medusa, Hercules, and little gladiators.

Everywhere we went my boys ran, jumped, skipped, giggled, and collected candy. People oohed and aahed at our elaborate matching costumes. Many even took pictures of us.

Hearing “trick or treat” in unison brought tears to my eyes. Anytime I can participate in normal holiday activities after such a harrowing ordeal is like having the ability to walk on water.

Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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