Posted by Alex Jofriet on August 03, 2015
I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.
Our site is a mile from the road, and we fill our backpacks with water and other survival necessities. I grab the tent stakes and poles, while Daniel carries the tent itself. With long-sleeve shirts and hats to protect our skin from the bitter sun, we begin the trek into the dunes. Each peak leads to a vista of sandy valley that eventually arches up into another hill. As we make our way farther and farther from the road, human footprints become faint.
We finally come to the site, marked by a single pole staked deep into the sand. It is nearing sundown, but heat still emanates from the ground and makes the horizon shimmer. We drop our supplies and stare out at the landscape. There is a comfort in this cleanliness—the dunes hide nothing, and there are no surprises. But there is also nothing, nothing except the heat and the grains of sand that fall through your fingers so easily. The White Sands are pristine, but pristine just means wasteland.
Daniel and I look at one another—
“How far is it to the Grand Canyon?”
“About 500 miles, I think.”
“Think we can get there by sunrise?”
And so we pack up and trek back to the car. Fifteen minutes later we are heading north—back into the grassland, the forest, the rocks, the trees, and the night.
I remember becoming sick in 2005. This was second grade, I think, maybe third. I was living in Wisconsin, and my drive to and from school was through a beautiful forest. I loved to watch the leaves on these trees darken into reds and yellows come October, the icicles replace them in the winter, and the green burst forth again in April, or perhaps May. But in the fall of 2005, my drives home were punctuated by a deep fatigue. At the end of long school days, all I could muster was an “I’m tired,” again and again.
The “tired” worsened. I couldn’t run in the grass with my sister, much less down the block to visit my friends. In the school picture from that year, my skin is ashen, and my cheeks thin. Doctor’s visits increased, but the answers never came. I just remember thinking this was normal. My parents never let me see how concerned they actually were.
After many months of worsening fatigue, my first life-saving break came: I was admitted into the Mayo Clinic. I remember driving up to Minneapolis. The next two days were white aprons, lying flat, holding my breath, and counting down from ten through the mask of sweet sleeping gas. Then, on the third day, I learned a new word: Crohn’s.
With that, things become more vivid. We visited a nutritionist who lived out on a farm in rural Wisconsin, and she listed off three things that would leave my life for years—dairy, wheat, processed sugar. She also gave my parents a list of supplements, thirty in all, that I would take daily. This was in addition to Asacol, the little red pill I took with breakfast, lunch, and dinner.
Somewhere in the following months I slipped into remission. I didn’t notice the difference, because I was still “tired” every day after school, and the restrictions on my diet made life just as difficult as before. Dinner each night was some combination of yams, broccoli, rice, and chicken. Breakfast was a smoothie of frozen blueberries, goat yogurt, and heaps of nutritional powders.
As I type these lists now, I’ll admit, the menu is enough to make my stomach growl. Especially on a college diet, fresh vegetables, meat, and a blueberry smoothie are luxuries I would take almost any day. But, of course, it wasn’t about the actual food—it was the exclusion.
Because what I remember most is wandering the aisles of grocery stores, excitedly checking food labels, only to see “Enriched Wheat Flower” as the first ingredient. Before the recent gluten-free craze (that I am exceedingly grateful for), everything had wheat. Everything except the cardboard blueberry waffles that were supposed to be a fine substitute for Eggo, or for the tough rice bread that never looked as good as the whole wheat my friends could eat.
I put two cans of Chef Boy-R-Dee Ravioli next to my bed, and a box of Kraft Mac ‘n Cheese, and promised myself that one day I would be healthy enough to eat them. I dreamt of the day that I wouldn’t have to sneak off to the nurses office to take my pills, or when I could bring in a normal sandwich to school. I didn’t even dare dream that one day I could eat the school lunch, or that the endless nightly pills I cried over would disappear. That was just too ambitious.
Well, our family moved to Omaha, and I started middle school. By now, something was working, and I had the energy to run around outside, or push the girl down the street on the tire swing. There were still hard moments though, like when I won a piece of candy in social studies class, and the teacher asked, “Can you eat this?” I lied and said yes, only to slip it in my pocket and throw it out later.
Around this time, three pills a day became one, and the supplements waned. My health continued to improve, and I was able to run cross-country and track in seventh and eighth grade. We even won state track eighth grade year (I was on the 1600m relay). I played point guard on a basketball team with my friends, and could spend the time after school shooting hoops in the backyard, not just sleeping. After years of struggle, my body was healthy and my spirit high.
With questions contact Christian at firstname.lastname@example.org