This article first appeared in the Cystinosis Research Network’s Fall/Winter 2014 newsletter. I encourage you to check it out there, along with all the other wonderful articles.
Cystinosis is the best thing that has ever happened to me.
I mean that not as a polarizing statement, but as a personal one. I have always enjoyed the gifts cystinosis has lavishly bestowed upon me—even those that come disguised as hardship.
It's a good thing that I feel this way, because cystinosis is written into my DNA. I can't just shake it off Taylor-Swift-style. It's good to avoid hating your DNA, because, well, you're kind of stuck with what you got. Literally. Unless you get those eye color-changing contact lens. Those are awesome.
But there is no denying that cystinosis can be destructive, and it has cost many people their lives. Too many. That is why the Cystinosis Research Network is so intent on raising funds, building awareness, and bringing families together for support. I am so grateful that such a community exists, and sometimes (OK, a lot of the time) I feel like I don't show that appreciation or give back enough in return. Maybe it's a zero-sum game: but I'm still trying.
My husband Wayne and I did a charity hike for CRN in September. This wasn't something that we planned far in advance; in fact, although hiking the 211-mile John Muir Trail (plus the combined 10 miles it takes to reach it and exit it) had been a dream of mine since I started hiking to combat pulmonary decline in early 2012, it wasn't something I thought we'd ever be able to schedule logistically.
But a pretty crazy blessing happened in July: I lost my teaching job. The K-8 school where I started teaching in 2005 decided to close its doors to the upper grades and continue as just a K-5, leaving me to continue working at a job that I thought would be for the summer only.
My first thought—before I even stopped to feel sad about the loss—was that without the school year constraints, now I could make the John Muir Trail a reality in September! So I put in a request for two weeks off and Wayne and I got started planning.
We wanted to take the cystinosis community with us on this journey, in part because I only ever took up hiking and considered the John Muir Trail because of cystinosis. (Remember how thankful I am for this beautiful mess of a disease?) I wanted to have my heroes on my heart—so I literally put them on my bag, attaching buttons of individuals with cystinosis to my pack. We dedicated each mile hiked to an individual based on a sponsorship price of $20 per mile. Although not every mile of the trail was sponsored, we raised almost $3000 for cystinosis research and had many miles covered.
There were truly moments when I didn’t want to continue. There was even a time when I had to come off the trail due to difficult circumstances and reenter after a few recovery days. I found it hard to eat and the cold almost unbearable. Most of the trail is above 10,000 feet and no section of it until near the end is flat—it is a constant up-and-down over mountain passes. We traveled south-to-north, starting with a hike to the top of Mt. Whitney (the highest point in the contiguous United States) and ending in Yosemite Valley (although a fire closed the final 12 miles of trail).
But those with cystinosis constantly motivated me. I kept aware of what mile we were on and knew who I was hiking for. A landmark would appear in the distance—Guitar Lake or Donahue Pass or Crabtree Meadow or Garnet Lake or any number of other places—and I would think about the individual whose mile it represented. Several hikers asked about the buttons on my pack, the most common question being, “Are those your kids?” (say what?! There were 40 buttons on that pack!), and it gave us a chance to describe cystinosis to a wide variety of strangers.
I wish I could share with you all the thoughts that went through my head as I thought fondly of those for whom each mile was dedicated, but those are not my stories to tell. Needless to say, from those who are on dialysis to those who have recently received kidney transplants and one sweet individual who recently passed away, each and every person inspired me.
Here are some things the John Muir Trail taught me about life, love, and cystinosis:
- It won’t be like walking on the moon.
One morning we crossed paths with a solo hiker headed the opposite direction and let him know we were headed toward Donahue Pass at 11,000 feet. We were around 9,500 feet at the time.
“Oh my,” he said. “You have a long way uphill.” He must have seen the melancholy written all over my face for he quickly added, “But it’s like walking on the moon. It’s beautiful up there. Otherworldly.”
Six hours later, I struggled to experience the moon walk. My pack was still heavy. My body was not weightless. Gravity still tugged at my every muscle, silently pleading, “Sit down.”
But there is a force greater than gravity, a voice louder than Isaac Newton’s, and that is the voice that says, “Here you are, weight at all.”
The cystinosis life is not weightless. You cannot put down your heavy pack. But you should carry it. You must carry it. It’s not going anywhere unless you do. And with a little practice, you can carry it with joy.
The alternative is to look at your heavy pack, plop yourself down on the couch and refuse to move, and complain about how heavy the pack sitting beside you is... and explain to others how it gives you a reason not to move.
- You’re always almost somewhere.
Another day, we passed a hiker who heartily patted me on the shoulder as he headed was down and we were headed up. “You’re almost there,” he said.
Almost where? I wondered. The audacity of this guy, assuming he knows my journey!
But we are always almost somewhere. Maybe it’s not always close to where we think our destination is, but we are always near the next landmark of our lives. We become so laser-focused on an important end goal (say, a cure) that we forget that our journeys are varied and complex, brimming with life, and worth experiencing 110%.
- The right way is usually the up way.
Whenever the trail forked, I knew our path was the one that went up. And lo and behold, that was also the path that led to the sweeping mountain passes and overlooks.
I hope the sting of this quote is lessened by the fact that I started hiking due to an unfortunate pulmonary diagnosis that I’ve since managed to turn around. John Muir said, “Few places in this world are more dangerous than home. Fear not, therefore, to try the mountain passes. They will kill care, save you from deadly apathy, set you free, and call forth every faculty into vigorous, enthusiastic action. Even the sick should try these so-called dangerous passes, because for every unfortunate they kill, they cure a thousand.”
- The toughest days are not necessarily the ones with the steepest paths.
One of the days I most dreaded while preparing for the JMT was Day 2. This day included the summit of the highest mountain in the Lower 48, which necessitated a 99-switchback, 2000-foot climb first thing in the morning.
I built this challenge up in my mind, but in the end, it wasn’t the one that took me down. It was the steepest path I had to walk, but I was also ready and on my guard.
It was Day 3, a day I had predetermined as “easy,” that I really struggled. An unexpected storm brought freezing cold and treacherous lightning. The altitude I had quickly attained robbed me of my appetite. And a single mile dragged on for hours.
We don’t often anticipate the tough (unless you anticipate every day to be an upcoming battle—which, to be honest, I don’t recommend).
- If you did it yesterday, you can do it today. If you do it today, you can do it tomorrow. Kind of.
Obviously, this argument is fundamentally flawed; if it were true, we could live forever. But the idea behind this one is that you need to keep going, being ever diligent (while not seeing it as survival or a battle or work) as you live this life. Building off #4, you have to take care of yourself in order to continue on the trail day after day.
- Hike your own hike.
This is a popular mantra among hikers, backpackers, and peak baggers. In a nutshell, there is a lot of advice out there as to how to complete a thru-hike like the John Muir Trail. But it may not all fit your unique circumstances. Similarly with cystinosis—make your experience your own while never refusing to accept or give supportive words to others who may be experiencing things quite differently.
- Love the one you’re with.
This is your life. You can’t trade it. Love it for all it contains. This is a lesson that I learned (or rather, realized again) before I even hit the trail. We aren’t given many years on this planet, and losing a job reminded me of how much stuff there is to do in not-so-much time. How fortunate to be able to explore one more thing because of a circumstance others may see as unfavorable. How can I view cystinosis as unfavorable when it has propelled me to these adventures that afford me such tremendous views of creation?
On a more personal side, my love for Wayne only grew during the challenges of this experience. Not only did he carry our communal gear, but he also set up the tent each night and cooked the food. He was and is a huge support in everything, and I couldn’t be more grateful. He has humored me up Mt. Kilimanjaro in Africa, motivated me on the John Muir Trail, and encouraged me to challenge what it means to have cystinosis.
We are all hiking a life trail every single day. There are mountains to summit and valleys to cross. I hope that the trail is smooth and glorious for every single one of you in the cystinosis community. But if that’s not possible, I hope it’s challenging and glorious.
“In this life we are all just walking up the mountain and we can sing as we climb or we can complain about our sore feet. Whichever we choose, we still gotta do the hike. I decided a long time ago singing made a lot more sense.” –Unknown