June 13, 2012 at 12:01 pm (Uncategorized)

I just finished reading Wild, a memoir by Cheryl Strayed about her life-changing solo hike on the Pacific Crest Trail from California to Washington. When she starts on her epic walk in Southern California, her life is in shambles. She’s reeling from the death of her mother and the disintegration of her marriage. But she finds herself again in the wilderness and discovers a path to a new life.

It’s a good book. But it made me nearly insane with jealousy. When I first saw it on the shelves of the bookstore, I couldn’t stop myself from sniping to my friend, “That’s my book. I wanted to write that.”

Of course it’s not my book. Nor is it my story. I’ve always wanted to hike the entire Pacific Crest Trail, a 2,650 mile back-country path that traverses some of the wildest and most beautiful land along the Sierras and Cascades between Mexico and Canada. But I’ve only experienced a small stretch of the trail in California. Jay and I hiked a hundred-odd miles on the PCT on two glorious backcountry backpacking trips. One of these was on our honeymoon. When we emerged into civilization we told each other, “Someday we’ll come back and hike the whole trail.” We even bought the trail guidebook that Strayed used, and did some semi-serious thinking about the logistics of the trek. But then we moved to Montana, and embarked on different adventures—living in Palau and traveling in Southeast Asia, bringing Andrew into the world, moving back to Montana.

And then I got sick. I didn’t lose my ability to hike immediately. Jay and I schlepped baby Andrew up many a Montana mountain. But vigorous backcountry hiking became difficult for me. I gained a lot of weight (a marvelous combination of high doses of prednisone and using food to soothe my anxiety). Sarcoidosis moved first into my joints, and then into my bones. My foot bones eroded from the inside out. I spent months in casts and boots trying to heal stress fractures caused by the sarcoidosis. Under stress from the extra pounds, weakened by prednisone, and damaged by disease, my ankle ligaments ruptured spontaneously on four different occasions. To make things even worse, the neurological problems brought on by sarcoidosis have made walking difficult and dangerous.

I tried not to dwell on what I can’t do—slip into the wilderness, with everything I needed to sustain me in my backpack. But I have missed my hiking time, especially my backpacking trips. We would go for days without seeing another person. Our daily routine was simple. We rose with the sun, walked and talked, cooled off in frigid mountain lakes, walked and talked some more, took breaks in shady glens, walked and talked, made camp where we wanted, built a fire and read aloud to each other, cooked something basic and nourishing, watched the stars fill the dark dome of the sky, talked a little more, and then slept beneath that never-ending sky. Some days we’d walk twenty miles; some days just a few. We walked beneath bald slabs of mountains and through fields of lacy wildflowers. We climbed to waterfalls and to windy vistas where we could see the land unfolding to the horizon. These trips were intense. I felt closely connected to Jay, to the sky, to the movement of the day, to the mountains and the dirt and the mosquitoes, and—most profoundly—to myself.

Our two trips on the Pacific Crest Trail were more than vacations or the chance to get away for a few days. Jay and I truly got to know each other on our first backcountry trip. Those miles of walking—and talking—bound us together more profoundly than an eternity of “date nights” could. And our time on the Pacific Crest Trail after our wedding cemented that bond. I also made some fairly important self-discoveries in the PCT. I decided to give the writing life a real try.

Another trek on the PCT is exactly what I need right now. I’m still trying to navigate life with a chronic illness, and I’m craving the silence and openness of the trail. I want to get away from hospitals and infusions, and worry only about how many miles are ahead of me for the day. It would be wonderful to feel so connected to Jay again. It’s been quite a while since we’ve had a whole day together with no distractions or interruptions.

Except I can’t do it. I’m not even close to being healthy enough or fit enough to walk all day long with a heavy load on my back. My ankles are too unreliable, and my vertigo too severe. There’s also that pesky thing called my real life between me and the trail. I have a kid, a house, a mortgage, and work I want to do. I simply can’t remove myself from my life so that I can gain perspective on it.

We all have full lives that require us to be in them. Such is the nature of growing up. It’s not chronic illness that keeps me here, out of the wild. It’s my gorgeous son and the crazy, full-to-the-brim life Jay and I have built for him and with him. But staying home doesn’t mean that I have to sit still.

It’s time for a pivot—that delicate turn from the grandiose to the possible. It feels like I’ve been doing more than my share of pivoting since I got sick eight years ago, but I’m beginning to believe that the pivot—done well—is the essence of intelligent adult life. I used to be a woman of extremes. I lurched from one absolute to another. But that’s not who I am anymore, thanks to my time in Chronic Town.

So if I can’t traipse off into the wild, what can I do to keep that dream and that part of myself alive? I can walk in the not-wild right outside my front door. Every night for the past couple of weeks, I’ve laced on my ankle braces and grabbed my trekking poles for balance in case of vertigo, and headed onto my street. I started off just walking a block. I’ve progressed to 1.5 miles. I admire my neighbor’s gardens. I breathe in the crisp scent of spring. I listen to the birds. I’ve even gotten to take in a couple of grand sunsets.

These walks are what I have now. Who knows what might be next?

Have you had to pivot in your adult life?

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Exactly When Did I Sign Up for the Ultra-Marathon?

June 8, 2012 at 2:39 pm (Uncategorized)

Please excuse my lengthy absence. I’ve been contending with the assorted crappiness that sarcoidosis brings my way. Truth be told, I probably could have squeezed out a few words these days. I jotted down some profound and uplifting thoughts in between rounds of splitting headaches, faltering vision, vertigo, and fatigue that would have made very good blog essays.

But I’ve been having a bad case of the “why bothers” (which I try very hard not to refer to around my 8 year old as the “f#!k its”). You know, why bother to get into a good writing routine when some new health problem will just lurch me out of it? Or, why bother to get going after the monthly chemo treatments flatten me, when it will be time to get another one just as soon as I’m over this one? Or, why bother to schedule a lunch date with a friend (or promise to do something with my son, or make a plan with my husband) when everyone—including me—knows I’ll either get sick, feel punky, or have to cancel for some other medical reason? I could go on, but you’ve probably exceeded your recommended daily allowance of Rebecca’s self-pity.

What I’m struggling with is the chronic part of the chronic illness equation. Endurance has never been my forte. Long ago, before I gained nearly 100 pounds on prednisone, I was a national-class cyclist. It’s hard to believe now, but my body fat was nearly measured in single digits. Even so, I was on the brawny side for cycling. I was very good at sprinting. If I could make it to the end of a race, the odds were in my favor that I would win the final sprint. Getting to the end was the hard part for me—physically and mentally. I needed to distract myself from the seemingly infinite miles and dreadful climbs between the fast start of a race and the fast finish. Sometimes I could. But sometimes, on mile 43 of a 70-odd mile road race, midway up a hill that I could not see the top of, I quit. I didn’t pull off the side of the road and throw my bike down and announce, “I quit,” though I did want to do just this on more occasions than I’ll ever admit. I was much more subtle. Something in me simply stopped trying to hang onto the lead pack with ever fiber of my being. I kept going hard, but not my hardest. Which is probably why I didn’t make an Olympic team, and why I eventually retired from cycling. I occasionally wonder how I would have fared if shorter distance races had been an Olympic sport for women at the time. I was a sprinter trying to hack it in distance races.

The only spinning I’m doing these days involves the vertigo in my sarcoidosis-addled brain. Nevertheless, I find myself, yet again, trying to keep going in this endurance race, the one for my life. I was diagnosed with sarcoidosis over eight years ago. I’ve had brief interludes when the disease loosens its grip on me, but I’ve been contending pretty regularly with sarcoidosis for all that time. I’ve been getting some form of chemotherapy at least once a month for going on four years.

That’s a long climb for a sprinter’s spirit. I’ve hung in the race so far using some of the strategies I learned in bike races. Focus not on the 20 hills coming up or the 50 miles before the finish, but only on this hill I’m climbing or this mile I’m pedaling through. So, when I start to gasp in despair at how many years of sarcoidosis are ahead of me, I put on mental blinders and tell myself that I only need to make it through this day or this round of infusions. But the sheer length of my current challenge breaks through my mind games, and I find it more difficult to pretend I’m not in an ultra-marathon of disease and loss.

I find it ironic that nearly all of my present life goals require the endurance I’ve told myself I don’t have. Losing those 100 pounds, writing my book, parenting my son, continuing my marriage, and living with sarcoidosis—all mean taking the long-view and staying on hill long past when my legs are tired and I’m ready to quit.

What would it mean to drop out of this never-ending slog against sarcoidosis? I’m not talking about dropping out of the race entirely. But I could stop trying so hard—ease back on the pedals, let the peloton accelerate ahead of me, and the hill loom above me. I could let the lonely open road swallow me up.

But I can’t. I just can’t. I brought a child into this world, and it’s not his fault I got sick soon after he was born. I need him to know that no matter what happens, I fought—and I fought with everything I had. I need him to know I stayed on the hill, even when it hurt. I need him to know that I stayed in the race.

Are you a sprinter or a marathoner? How do you keep going? What are your words of wisdom for persevering—with hope and dignity?

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