Living Well With Cystinosis: Your Only Job is to Figure Out Your Next Step

We spent last week in Colorado, first in Telluride and then in the Breckenridge area. What a treasure trove of natural beauty and outdoor activities!

One of our planned activities was to do the Telluride Via Ferrata, a bucket list item of mine that I've wanted to do for a few years.

A via ferrata, which just translates as "iron way," is a route that would be impossible to complete (well, for most people—Alex Honnold types excluded) without certain manmade elements such as steel cables, fixed anchors, ladders, and the like. Via ferratas were originally created in Europe, particularly in the Alps, to aid in the movement of troops during World War I.

Now, though, they are primarily done for fun.

We went on July 4th, which ended up being a good choice due to the Telluride parade serving as a deterrent for those who might otherwise traverse the rock face that day. We had the route mainly to ourselves, save a couple of guided groups. (We opted to go without a guide.)

A couple and their guide were directly behind us for the "Main Event," the name given to the most exposed section of the route (although there were plenty of other "high-consequence" areas, as we would find).

The woman was terrified at this section. I could tell from her tone of voice that it was not going to happen and that they would end up turning back. Nevertheless, their guide (undoubtedly paid a hefty sum and wanting to do due diligence) did his best to convince her to do the traverse.

"You only have to think about one thing," he told her. "Just one: where to put your feet and hands next. That is your one job. You don't need to think about anything else."

Ultimately, she didn't go.

But her guide was right. As I stepped out seemingly into thin air high above the valley floor, I thought only of my next step.

The Main Event

I remained near-sighted as I looked down to step on each narrow bolted rung, not allowing my eyes to focus on the valley far below.

I looked up only to see where my hands had to reach next, sometimes to a place where my four-foot-eleven-inch frame didn't seem likely to stretch.

When I wasn't looking up or down, I focused straight ahead to the rock face in front of me, sure and steady as long as I didn't linger.

And when the foot holds briefly disappeared and I had to rely on my arms and slick soles directly on the rock face to move myself to a place of relative safety, I thought not of my upper body weakness but only of that next step. (OK, so I also said a prayer.)

The Main Event (Closer Up)

When I completed the Main Event (and after I had gone BACK out so Wayne could take a photo), I felt overwhelmed. I looked back at the 300-foot stretch. I looked down to the valley below. And I wanted to cry out in fear. But I knew there was no sense in it: It was done.

Obviously, the life lesson here is a little cliche, but cliches are sometimes made more meaningful by real analogies. We've all heard the adage "The journey of a thousand miles begins with a single step." It's a nice thing to tell someone who is facing an overwhelming challenge, but it's still typically a pretty difficult concept to grasp and put into practice.

Now that I have this via ferrata to remember, I can honestly understand a little better how to apply the wisdom of it.

Take, for example, the rare disease journey. In the cystinosis community, we're often given lifespan estimates (why, I have no idea) and future organ failure predictions and news of troubles ahead.

Now close your eyes and shut all that stuff out.

Be near-sighted for a moment. (This isn't my advice in every endeavor, mind you.)

What is your next step in this particular journey? Where is the best place to put your feet, your hands, your mind next? Maybe you have a decision to make, or maybe that step is routine. Either way, taking your best step next will ensure that you're doing all you can to live the healthiest future, without all the worry that comes with thinking about it now.

Well, look at the time. My next step is to take my 8 a.m. medications. That's my only job on this cystinosis journey right now.

You can do it.