Last week, we decorated for the holidays. Mugs of cocoa steamed on the dining room table, and jolly holiday tunes played in our living room as the kids maneuvered around our tree, bestowing treasured ornament-shaped memories onto perky plastic branches.
In my hands, I held a rust-colored piece of metal shaped like a person on a hike. I strained to remember its origins. I fingered its shape, then flipped it over to search for more identifiable features. “RMNP” it read.
I repeated the cryptic acronym to myself, willing my brain to pluck out the memory through the fog. After this attempt failed, I tilted my chin toward my fiancé, Michael, where he stood unearthing bells and balls and baubles from under sheaths of tissue paper.
“RMNP,” I said, looping my finger through the ribbon and holding the hiker aloft. “What’s RMNP?”
“Rocky Mountain National Park,” he replied, without missing a beat. “Remember that time we hiked 12 miles over a mountain in hiking sandals?”
I do remember.
We’re from Des Moines, Iowa, which is located in the middle of a state that’s in the middle of the country. The nearest beach or jagged peak is a 10-hour drive.
Imagine our excitement three summers ago, when Michael and I got to explore the great outdoors of RMNP. We spent an entire day hiking from Bear Lake to the Fern Lake Trailhead, and our shared enthusiasm outweighed how unprepared we were for the distance.
That morning, we picnicked under a cresting sun along Bear Lake. We had woken up in a tent, and I hadn’t slept great on my mat. Plus, symptoms-wise, my body wasn’t exactly in hiking shape. The previous day, I had seen a porphyria expert, and the intravenous treatment was still settling into my system, making me achy and pukey.
I tested where I was at physically with an easy walk around the lake. When that felt tolerable, I suggested some elevation. Our goal was to get to the first trail marker, the split for the Flattop Mountain Trail. Craving better views, we continued our ascent from there.
The higher we climbed, the slower my pace became, and the more deliberate each step was. My body was screaming for attention.
To be perfectly clear, it was me who silenced my body’s voice. Michael is an incredibly patient sidekick and lets me call the shots. It was my mind that decided it was smarter than my body, as usual.
The path grew steeper just before a clearing with a meadow and several large flat-rock surfaces. We sat to rest, ate a snack, and consulted our map. It looked as though we were nearly over the mountain, and we both wanted to see what was on the other side. So, we made the fateful decision to continue on. The afternoon descent was full of waterfalls, evolving terrain, friendly hikers, and even a moose with her calf.
Later that night, while sitting in my lounge chair back at camp, the highs from the hike had all crashed down, and I was huddled under a blanket taking deep breaths. Not only was I sore, tired, and blistered — if we knew we were going that far we would have put on our boots — but I had also fallen rapidly into the depths of a migraine. It was the kind of headache that was accompanied by ferocious neck and shoulder pain, which had me longing for the confines of a dark, silent room. I spent a miserable night in our tent and was out of commission for days.
This hike is a metaphor for how I live — particularly in the initial years of my illness, when everything was a fight, a steep incline to claw up. My brain wants so badly to hold on to this vision of how my life used to be. It wants to say yes to everything and be physically active. I write a lot about the peace negotiations between my body and my mind.
This little hiker represents the evolving perspective of my chronic illness and how surrendering to my body has shaped my day-to-day over the three years it’s hung on our tree.
The first year, I was focused on the positive, and the ornament reminded me of the happiness we found along the trail. The second year, I was angry. I resented that hiker and let it represent all the things I loved that acute hepatic porphyria had taken from me. This year, it reminds me that consequences arise when I blow through my body’s yellow lights.
The ornament is a reminder of why I’m working toward respecting my body’s inner wisdom. Maybe next year when we decorate, I will be done chasing mountains.
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.
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