The eclipse offers me time for reflection on life with aHUS

My health challenges are hard, but life is better in other ways

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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.

This week’s solar eclipse got me thinking about the last time we had one, in 2017. At the time, I was running a thriving preschool with over 100 students. I’d gone on the trip of a lifetime to the Chichén Itzá Mayan ruins in eastern Mexico. And I’d decided to end my marriage and become a single mother. Yet even with all of these changes, life seemed easier back then.

Fast forward to last Monday’s eclipse. I sat with my eyes closed soaking in the heat of the sun like a battery charging. It was 75 F, but I was still cold and hoped the sun would help. My boys ran a few circles around me, then hopped on their scooters and headed down the street.

This gave me time to reflect on the differences in my life in 2017 and today. It’s surreal how much life has changed in those seven years. I had no idea then that my life would become what it is now. During the previous eclipse, I didn’t know that in three short years, my entire world would be turned upside down and I would nearly die of a rare disease I’d never heard of.

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In September 2020, I became gravely ill and ended up in the intensive care unit for almost two months. I had kidney and liver failure and a ministroke, and the muscles around my heart were enlarged. I also had uncontrolled hypertension and hemolytic anemia, and was covered in huge black and purple bruises.

Doctors fought to keep me alive with dialysis, plasmapheresis, and blood transfusions while they looked for answers. I was finally diagnosed with atypical hemolytic uremic syndrome (aHUS). I was barely alive, but I had survived. Little did I know then that it was just the beginning of a long journey of health challenges.

Today, I feel like a stranger in my own skin. Sometimes I mourn my old life, and I spend a lot of time being held hostage by my rare disease and its comorbidities. At times, I’m downright angry with my body. This is life with aHUS.

I have chemotherapy and bloodwork done every 14 days. At times, the side effects from chemotherapy are unrelenting. Plus, I have stage 4 chronic kidney disease. Fatigue leaves me yawning all day, no matter how much sleep I get. And a nonexistent immune system causes a constant fear of infection or illness.

I’ve lost a lot to this disease. I lost my home, my career, crucial time with my children, a chance to have more children, and a lot of my independence. If someone had told me I’d be on disability before the age of 40, I wouldn’t have believed them.

The immense losses are sometimes suffocating. But oddly enough, as I sat in the sun ahead of the eclipse, waiting for the darkness to overtake my surroundings, I couldn’t help but think about how different things might have been without aHUS. If I’d never been sick, I’d still be working in education, so I probably would’ve been on the job and not relaxing in the sun. If I’d never been sick, I wouldn’t have been able to move to South Carolina, and I probably wouldn’t have met my wonderful fiancé.

I believe that everything happens for a reason, and everything I’ve endured has led me to this exact moment — sitting in the sun relaxing with my family in my beautiful yard watching an eclipse.

In 2017, I was killing myself at work every day. Now I have all the time in the world for my children and my home. My life no longer feels rushed or monotonous. Despite my health challenges, life in 2024 is so much brighter than it was seven years ago, and I’m grateful for that.

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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