Living Well With Cystinosis: Shouldering New Challenges

I ask not for a lighter burden, but for broader shoulders.
— Jewish Proverb

Something you might not realize if you haven't hiked or snowshoed in late spring/summer snow is that it can be terribly hot. Obviously, the snow itself is cold, but vast quantities of snow cover provide the perfect reflective surface for the sun. On a cloudless day, the sun not only beats down on you from above but also bounces off the snow and hits you from below.


I experienced a perfect storm of difficult conditions during a mid-June hike: hot sun, large expanses of soft snow (which requires lifting the feet higher to walk through), high elevation (nearly 10,000 feet), and an uphill grade. I also carried a pack with my DSLR and a large, clunky, wide-angle lens. That's pretty much all my pack had in it.

But let me back up for a second.

Almost a year ago, I hiked for 22 hours straight with a light pack on my back. But for the next three months, I had significant shoulder, neck, and upper back pain and was unable to bear much weight. However, something worth noting is that at no point during the hike itself did I feel like my pack was a burden.

During this past weekend's hike, things were different. I felt shoulder and upper back pain and weakness throughout the hike.

That's really the word I'd use to describe what I felt: weakness.

At one point I raised my hands over my head and reached for a tree branch to stretch my shoulders thinking they just needed a little warm-up.

But that wasn't it. The shoulder weakness persisted, and despite the addition of the heat and the snow and the grade, I knew this was not my normal.

The shoulders are a known problem area for people with cystinosis. What this trek made evident is that I need to work on this area in particular.

So I've been looking at some exercises and am planning to increase my rock climbing activities.

Life is a marathon, never a sprint. I am grateful for the changes that remind me to keep training against beautiful backdrops that I'd otherwise never experience. I was destined to be a couch potato, y'all — cystinosis turned me into an athlete.