The terrifying AIP attack that caused temporary paralysis

I was a few weeks into a common cold, and late one evening I needed to lie down. My husband, Daniel, was already in the bed, so I made myself comfortable beside him by lying flat on my back, placing my hands on my chest and interlocking my fingers. I lay there awhile and tried getting up once Daniel made his way to our living room. However, I couldn’t move.

At first, I didn’t think too much about it, but I became concerned a few minutes later when I realized that I couldn’t move my entire body. I yelled for Daniel, and he came running into our small bedroom. I explained that I couldn’t move my body no matter how hard I tried. Regardless of his attempts to move me, he was unsuccessful. My body was frozen in place.

It didn’t seem as if it took long for paramedics to arrive at our home and begin evaluating me. At that time, Daniel and I lived in a small motor home, and the paramedics weren’t able to get a stretcher through our door. I remember Daniel gently dragging me off the bed and carrying me to our door where paramedics and a stretcher waited. Daniel got me lined up with the stretcher and “trust fall”-pushed me out of the door to land on the stretcher.

Keep in mind that during this time, I was still 100% unable to move any part of my body; however, I was completely coherent and knew everything that was going on.

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My journey as I perceived it

Once in the ambulance, I told the paramedic that I was dying and I asked if he would pray with me. I closed my eyes and everything became pitch black. Although I was surrounded by complete darkness, I felt an extreme amount of peace. As I made my way down the black hallway, a bright light glared over the faces of three people who’d passed away but had been close to me.

Regardless of my inability to see anything else in front of me, I was, and still am, confident that I made my way down a hallway and to a staircase. I made it far up the staircase, but I got pushed back down to the bottom. I started over again, making it a little farther the second time; however, I got pushed back down to the bottom again.

Still surrounded by the most peaceful darkness I’ve ever felt, I made my way up those stairs one more time, almost reaching the top, but after being pushed back to the bottom a third time, I yelled out “I can feel my toes” as they began to wiggle and tingle.

I woke up and was surrounded by Daniel and multiple healthcare professionals who were evaluating me. During the three and a half hours that I was paralyzed, I’d been on a 20-minute ambulance ride, gotten admitted to the hospital, and put on Panhematin (hemin for injection) through a peripherally inserted central catheter line. However, I wasn’t awake for the ambulance ride or the first part of my hospitalization; instead, I was on the stairway to heaven.

While doctors weren’t sure what precisely caused my paralysis, they were, and still are, confident it was caused by acute intermittent porphyria (AIP). While this AIP attack was the most severe I’ve had since my 2020 diagnosis, I recovered and haven’t experienced this symptom since it happened in February 2022. Therefore, I’m a blessed porphyria warrior!

Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.