Clouds of Illness (2003)

I am 12, maybe, or 14. It is the last morning of the family vacation in northern Colorado. We’ve spent a week in our tent at a National Forest Service campground 15 miles down a gravel road just below Rabbit Ears Pass. Or near Red Feather Lakes. It’s always somewhere remote, but researched, and we bring topo maps with us.

This far north this late in the year the weather is already edging toward fall and mornings are frosty. Today, we get up early to break camp. Each of us has tasks: mine are to help fold the stiff-with-cold green canvas tent and assist in tying the tarp-covered bundle on top of the car. When everything is loaded, we hit the road, stopping for gas. And lunch, when we pull over at a roadside park and finish off the supply of pimiento-cheese sandwiches and canned shoestring potatoes.

The plan for the afternoon is always the same: supper in Santa Fe then drive the rest of the way to Lubbock. We stop at the Furr’s Cafeteria on the north side of town; after two weeks of hobo stew and burned Dutch-oven biscuits, a meal of fried chicken and mac-and-cheese is delectable. After we eat, it is back in the car and drive, without further stops, until we get home, usually around midnight.

That year, when we are inside Furr’s, storm clouds begin to build up west of town, in the Jemez Mountains. As we walk to the car, we can see flashes of lightning sparking the insides of the thunderclouds. We’ve come so far south today that we’ve escaped the autumn of the morning and this storm we can see proves it: it’s a late-afternoon late-summer show of light and power.

Everything changed a dozen years ago, when Nathan was diagnosed with diabetes. He was two weeks away from his ninth birthday. Until that moment, he’d had only the usual childhood stuff – colds, ear infections, skinned knees – that all kids have. But the ease of injuries that could be fixed with a Band-Aid or sickness cured by that pink antibiotic that had to be kept in the refrigerator was gone in the instant of the diagnosis.

He was hospitalized immediately, and stayed for a week, getting his body chemistry stabilized and completing diabetes education classes. He only cried once, and that was when I told him he’d have to stay overnight in the hospital. The rest of the time he was charming and witty. There were new medical specialists flung our way – endocrinologists, nutritionists, diabetes ed nurses – as it gradually sunk in to all of us that our former life had changed forever.

Diabetes and its responsibilities surely was an enormous burden for him, but he bore it with grace. The complications of food exchanges and sliding scale insulin dosages and injections became so quickly a part of our family routine that it was hard to remember when they were things we hadn’t even heard about.

A few years later, he began a series of unusual afflictions, none of them related to diabetes or to each other.

First, an ear-nose-throat doc removed a cyst from his face beside his ear. Then he had a spider bite that got so disgustingly infected that even the pediatrician was more than a little repulsed by it. He cut his arm at church camp and had to get a bunch of stitches, which left a peace-sign shaped scar on his forearm. He had a mysterious lump on his jaw that was removed by an oral surgeon. The lump was tested and studied, but the nature of it was never determined: no one could say what it was, what caused it, if it might come back. The oral surgeon told me that if it returned, he’d be inclined to think it might be cancer.

Later, he had a lump on his forehead. His pediatrician ordered x-rays, which Nathan took one look at and said, “That looks like what I had on my jaw.” And he saw another spot on the x-ray that turned out to be another lump. The pediatrician handed him off to a neurosurgeon, who removed one lump, but counted a few more. Six weeks after the surgery, we had a diagnosis: histiocytosis, a rare blood disorder. The neurosurgeon handed us off to a pediatric oncologist and Nathan began a half-year of weekly chemotheraphy treatments. By this time, he was in high school, and was able to keep up with his school work and hold a part time job. He went to chemo by himself most of the time: that was important to him. I suppose it made it seem like something normal kids did – drive somewhere after school without their moms along. He charmed the nurses, the doctors, the lab techs, the chaplain. He entertained the little kids in the waiting room – one time he put on a funny hat and sang “Don’t Cry For Me Argentina.” He even took a date with him once, a redheaded girl he called Crazy Hair Claire. And he protected me, hiding whatever fear and anger he had behind a fortress-like wall of lunacy.

He came through treatment, and the disease seemed to go away, though the oncologist was prepared to monitor him for several more years.

In September of his senior year in high school, he collapsed in the parking lot at school and was taken by ambulance to the hospital. By the time we got there, he was having seizures that were so violent that two security guards were called in to help hold him down while the nurses got an IV started. He was admitted to the ICU and tests were started. Various seizure disorders were ruled out and by the end of the day, he was diagnosed with another rare condition – neurocardiogenic syncope. A new doctor – a pediatric cardiologist – began treatment. He was released a couple of days later, on blood pressure drugs and large volumes of Gatorade to help him stay hydrated.

In January of the same school year: he got a staph infection in his finger which required emergency surgery. This time, he got two new doctors, an orthopedic surgeon and an infectious diseases doctor. He was in the hospital almost a week. One day while he was in the hospital he amused himself by making a hat from a traction boot, an inflated latex glove, two empty syringes, and some ear cones. The surgeon saw him wearing the creation and wrote orders that he (and it) be photographed. (Two years later, I found out that the photo was still hanging in an office at the children’s hospital.) After he was released from the hospital he still had to go back every day for a couple of weeks for painful hydrotheraphy. And he had infusion therapy at home for about the same amount of time. We got to know the wound care nurse and the home health care worker.

At the very beginning of his freshman year in college, a lump on his thigh made us suspicious that the histiocytosis may have returned. We consulted a surgeon, who decided to take a wait-and-see attitude. That paid off: the lump went away on its own.

The winter of that year, he had another syncope episode and lost a lot of short-term memory. The worst part: he sat on the sofa and asked, “What day is it?” over and over, with no memory of the question, or the answer.

Junior year in college, another scare. An eye exam was called “suspicious,” and the ophthalmologist wanted more tests. We headed back to the oncologist, who ordered MRIs of Nathan’s head. I spent several nervous days reading everything I could find about histiocytosis to see if it ever turns up as a brain tumor. The MRI was clear; in fact, the doctor said, “Why are you here?” Those are sweet and fine words to hear from an oncologist; we’d had another near miss.

The illnesses never seemed to stop, only to slack off now and then, to gather momentum for the next storm. Clouds of illnesses hung heavy while we dodged, coped, prayed, hoped.

As we drive toward home, and as it gets dark, we can still see the lightning. Bold lines flash to the ground or glow inside the bank of clouds. It never gets any closer to us than when we’d first spotted it and it seems to follow our path: out of town along Cerillos Road, then to Cline’s Corners, Santa Rosa, Fort Sumner, Clovis, Muleshoe, Lubbock.

After we make the turn south at Santa Rosa, we are away from traffic. The two-lane road is ours alone, the glow from the dashboard barely illuminating the inside of the car. We’re able to get radio stations some of the time – long distance AM stations from Oklahoma City or Dallas – but mostly it’s quiet in the car. The lightning flashes from time to time, still not any closer, but a constant reminder of what is behind us.

When we get home, we unload only the evening’s necessities from the car. Tomorrow is the day for cleaning and archiving the camping equipment for another year. We open the bedroom windows, and the ones in the den, too, to let the cool evening air replace the stale and closed-up house air, then we go to sleep.

Within the hour that storm which had stalked us from Santa Fe arrives, sneaking up on us and crashing into our glad-to-be-home slumber with a roll of thunder and a dusty splash of raindrops against metal window screens.

If we’d kept going, kept driving on through the night, the storm would have lost its energy, died out before it caught us. But we stopped, thinking we were safe, and the storm got us.

And that’s how it is with Nathan. As long as we keep running, keep moving, keep looking back over our shoulders, maybe we can keep illnesses at bay. Maybe those storms will play themselves out before he gets rained on.


6 thoughts on “Clouds of Illness (2003)

  1. Very well written but very difficult to read. It breaks my heart for Nathan a courageous young man. I admire him. Thanks for sharing these intimate things. I hope the storm can stay away from Nathan now and always.
    I am not a religious person at all, I simply do not believe, but when something like this touches me, I feel the need to pray – foolish as I think it is. So i’ll just keep Nathan and his mom in my heart. Real help I cannot give, maybe a sliver of solace and understanding. With all my heart. Vera

    1. Thanks, Vera. Your lovely comment brought tears to my eyes.

      I wrote this a long time ago, but it never felt like the right time to post it until now. I just now realized that this week marks 23 years since Nathan’s diabetes diagnosis, so something about that date surely triggered that made me decide NOW was the time share the essay.

      Nathan will be 32 later this month; he’s married now, working in a profession he loves (architecture – he works for a firm and teaches part time at the college of architecture here in Lubbock). He and his wife (she’s an attorney) have a daughter who is 6 and will have their second daughter in just a few weeks. He still has odd health-related things happen, but overall he’s doing very well.

      He’s my hero, which I do not say lightly, as I am sure you know.

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