chronic illness

Off the PCT

My final day on the PCT began inconsequentially, save for the Lyme trifecta of dizziness, tiredness, and nausea I was experiencing. I packed up and hiked down to Rae Lakes, enjoying again the spectacular lakeside trail. Near the Rae Lakes ranger station — where friendly Sam Webster was stationed — I marveled at the tranquility of three sleeping deer. I thought about my likely-imminent departure from the trail. How I would miss this wilderness!

Although the forecast had called for afternoon storms, I was only one mile into my hike when the skies opened up. For a few moments, there was just a light, cold rain, but soon the hail began falling.wpid-2015-08-01-06.03.55-1.jpg.jpeg

As I mentioned a few days ago, this hailstorm was unlike any storm I’d ever before experienced — and I’m from the unpredictable East Coast. The hail began falling and kept falling…and falling…and falling. I’m used to hailstorms accompanying warm rain in summer storms or the tumultuous air of spring frontal systems; I’m accustomed to hail falling briefly before giving way to rain. This hailstorm was a nonconformist: It hailed for 90 minutes or so and left inches of hail on the trail in its wake.

Throughout the storm, thunder resounded in the valley and lightning lit up the sky. The sparse tree cover overhead and nearby lakes didn’t exactly make the trail a safe place to be; however, I kept walking, remembering that denser tree cover awaited as I approached Woods Creek.

Crunching hailstones beneath my feet, I descended lower in the valley. By the time I was thoroughly chilled from the ice that fell from the sky, the ice was replaced by rain, a bitterly cold rain whose cold seeped through clothing even when its moisture did not. I traipsed through the increasingly green wilderness as I neared Woods Creek, wet and numb.

I fleetingly considered climbing Pinchot Pass after making it down to Woods Creek. I think my reasoning had been that the effort expended during an ascent would warm my core, but it seems more likely that the thought wasn’t reasoned at all. As I arrived at the Woods Creek Campsite, I recognized Ranger Webster through the rain.

“Has anyone come over the Pass today?” I asked, waving a numb hand toward Pinchot.

“Not since early this morning. I’m getting reports of a good bit of snow up there.”

Fortunately, the threat of snow travel made my brain surrender its idea of hiking over Pinchot. I accepted the fact that my day’s hike would be over after only seven downhill miles and began the challenging task of erecting my tent in the rain with immovable fingers.

After a good half-hour spent thawing my fingers and making campsite-creating progress in a stepwise fashion, my tent was up. As quickly as I could, I stripped off my rain gear and crawled into my tent and under my quilt.

The rain kept falling fast and furiously, and soon even my previously-dryish campsite became a shallow lake.   I hid under my quilt, willing myself to be warm.

Sometime in the afternoon, the weather broke.

wpid-2015-08-01-06.03.59-1.jpg.jpegEventually, I mustered the energy to take my belongings out of my tent and pack and set them in the sun to dry. Forty-five minutes later, the sun went away as more storm clouds moved in. Stumbling around the expansive campsite, I set up my tent on a drier patch of ground and crawled back inside.

It was 24 hours before I worked up the spoons (or, as thesweetadventurer said, “the titanium sporks”) to even consider leaving camp.

I spent most of that time sleeping and, if I’m being honest, feeling sorry for myself. I was below 8500 feet now; I still felt miserable, and my symptoms couldn’t be written off as signs of altitude sickness. I was definitely, positively, undoubtedly, absolutely dealing with a relapse of Lyme disease, a relapse that was definitely, positively, undoubtedly, absolutely forcing me off the PCT and back to bed. When I wasn’t sleeping, I was crying.

Then, sometime just before noon on the 10th, I realized how very ridiculous I was being, wallowing in self-pity. Yes, I was going to get off trail; yes, my plans were going to change again; yes, I’ve spent 13 of the last 23 months in bed. But, those 13 months haven’t been completely lost, and the other ten have been some of the most spectacular of my life. And, here I was, in a truly beautiful place. The sun was shining down all around me, the pendulous branches of the foxtail pines were swaying in the breeze, and the roar of Woods Creek filled the air. I began crying with gratitude — both for that moment and for the months I’d spent in the wilderness of California.

An hour later, I was ready for the slow, painful trek to Road’s End. I crossed the suspension bridge again, took a picture of the 800-mile mark again, and turned off the PCT and onto the Paradise Valley Trail again. With a pack-ful of memories of a wonderful hike, I was ready to head home.

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On the PCT: Kearsarge Pass, Take Three

My final foray on the Pacific Crest Trail this year was dramatic, to say the least.

After the Lyme relapse that sidelined me, I was feeling well enough that I wanted to get back on the trail by the second week in July. I spent a day bustling around Teresa and Laurie’s home, preparing to hike again: There was food to be packed and food to be eaten; Doxycycline-approved clothing to wash and Rainbow Dash-approved clothing to send home. Excited to be going back to the trail, I happily had my last night in an amazingly comfortable bed, watched my last Doctor Who episode, and had my last shower.

Feeling some tiredness and dizziness while loading the last of my belongings into my pack, the nerves set in. I worked to assuage them by thinking about all the antibiotics I’d taken and detoxing I’d done, but my efforts weren’t entirely effective. As Teresa drove me from Acton all the way to the Onion Valley Trailhead near Independence, I talked and laughed and worried.

Driving to Independence, CA

Driving to Independence, CA

At the trailhead, a previous year’s thru-hiker noticed my pack and struck up a conversation whilst I was giving my gear the final once over and taking mid-day medicine.

“You hiking the trail?”

“Yes.”

“Aren’t you a little late? Seems you should have been here a few weeks ago.”

That’s probably the last thing I needed someone to point out to me.

As we had done near Mojave with Pine Nut, Ant, and Laurie, Teresa and I set off down the trail together. With seven days of food in my pack rather than 11, the climb toward Kearsarge Pass wasn’t so arduous, but I could tell that the weeks of Lyme rest had taken their toll. We walked steadily onward, enjoying the trailside waterfalls, green rocks, and foxtail pines. The gathering storm clouds overhead were less enjoyed, especially when they began letting loose rumbles of thunder.

One hour into the climb, Teresa and I said our tearful goodbyes (“until we meet again”). Then, I turned and walked up into the storm.

Honestly, my tears remained for a good ten minutes. My goodbye wasn’t eased by my being so anxious, so worried that I was being too ambitious in returning to the trail. But, eventually, the endorphins of a good uphill hike started to kick in, and I neared treeline.

A deer bounded across the trail, the upper-atmosphere thunder rumbled a little louder, and tiny hail began falling. I walked on.

Kearsarge Pass was shrouded in clouds, giving it an otherworldly feel. Chilled from the hail, I snapped a quick picture before hurrying down the other side.

As a lot, thru-hikers despise “bonus miles,” any walking in addition to the 2,650 miles between Mexico and Canada. The Onion Valley Trail is more than 7.5 miles long, and I did it three times. However, there was something enjoyable about hiking a familiar stretch of trail, particularly now that it was so unusually misty.

As I’d neared the top of Kearsarge, my dizziness had intensified. Part of my rushing down the Pass was in the hopes that losing altitude would improve my symptoms; it didn’t. The PCT between the Onion Valley Trail and Glen Pass stays high, so I knew I needed to get up and over Glen before calling it a night.

I’d be lying if I tried to pretend those miles weren’t difficult. I resorted to counting my steps, rewarding myself with a break after every one or two hundred footfalls.

By the time I was atop Glen, the hail had stopped and the storm had blown over a bit; however, the evening was bringing chillier air with it. I marched onward, eager to get down to Rae Lakes and make camp, keen to quell my dizziness.

In the twilight of 8:30, I spied a small campsite next to a tree overlooking Upper Rae Lake and decided to call it a day. Too nauseated to eat, I crawled under my quilt without dinner. I thought sleep would come easily, but I was feverish and nauseated and dizzy and spent hours just trying to feel okay.

My fever broke in the middle of the night. In the morning, I considered my possible escape routes, in the event that I needed them: up and over Glen and Kearsarge Passes or, once again, a long, downhill trek to Road’s End. I decided that the best thing to do was to get to lower elevation — to tease the effects of altitude sickness from the effects of Lyme — and reevaluate my predicament there. I packed up and hiked northward.

A hailstorm unlike any I’d seen before soon accompanied me.

To be continued…

On the PCT: Back to the Trail

As it turns out, I made it out of the woods — off trail for 2015 — before this previously-written post was scheduled to go online.  This post was written while I was rallying with a course of antibiotics, just before I headed back over Kearsarge Pass for a third time.  After the beautiful words of encouragement, comfort, support, and solidarity that I received in response to last week’s post about Lyme forcing me off the Pacific Crest Trail, I felt it was necessary to explain the context of the words below, as without context they might indicate that I’m still trekking northward.  I considered not posting them at all, but I’d like this post to stand as evidence for myself that I am stubborn when it comes to fighting Lyme; I’m stubborn and resilient and sometimes even follow my own advice, as I tried intrepidly to return to the trail before calling it quits.  (The tale of my farewell to the PCT is a fun one, but I’ll save that for another day…)



Once upon a time — when I dared to hope that my case of Lyme had been acute, when I was healthy and training for a marathon, and when I was poring over maps and guidebooks in my family’s living room in Kentucky — I drew up a plan for the PCT that included less than one week of zero days.  Now, after taking two weeks of zeros in one go while fighting off a Lyme relapse at Teresa and Laurie’s in Acton, I’m heading back to the Sierra.

Sometimes, I think my PCT hike is supposed to be a lesson in flexibility.  Or maybe that’s just Lyme.
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In any case, I’m not ready to give up yet.

Thanks to antibiotics and detoxing, my symptoms have diminished significantly.  One week ago, I couldn’t walk to the bathroom without becoming so dizzy that I needed to lie down; now, I’m capable of walking at least four miles without issue.  (Standing still is more challenging.)  I realize that walking around the neighborhood is a little different from carrying a large pack up and over 12,000-foot passes, but I’m hopeful.

At first, it felt strange to be off the trail and frustrating to think that the future of my hike was in limbo.  However, once I was able to stay awake between meals, my zero days gave me lots of time to write and think and catch up with family and friends.  I also enjoyed cooking with non-dehydrated fruits and veggies and binge-watching Doctor Who, Orange is the New Black, and Chasing Life.  And, I took it upon myself to be introduced to My Little Pony: Friendship is Magic, which seemed important, given that my trail name is Rainbow Dash.  (I may have absolutely loved the show.)
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I think the most important outcome of this relapse and the time I spent dealing with it is the fighting spirit I cultivated toward Lyme disease.  Up until this point, I’d just sort of accepted Lyme as part of my reality, figuring that the spirochete population inside me would periodically grow and rebel and I’d just fight it off again with some antibiotics when it debilitated me.  One-on-one and in small group settings, I’d spoken to people about the problems inherent in testing and treating the disease, but I’d basically been overtly complacent about those issues.

Now I’m angry, ready to fight, and done fighting alone.  I’m going to start seeing a LLMD, and I’m going to try to end this, even if doing so forces me to feel a whole lot worse before I can feel better.  I’m going to participate more actively in Lyme advocacy.  And, I’m going to figure out some way to leverage the outdoor community in fighting back against this epidemic.  It shouldn’t be that those who are most ill with Lyme disease are the only ones advocating for more research, awareness, and education:  Hikers, backpackers, hunters, fisherman, mountain bikers, geocachers, orienteers, nature photographers, wilderness therapists, naturalists, biologists, conservationists, foresters, etc. have a vested interested, too, even if they don’t realize it yet.

But, first, I need to get to Canada, at which point I’ll be able to give $2703 to the International Lyme and Associated Diseases Society, which is a good start.  I’m not sure whether I’m more excited or nervous to hit the trail again.  I think I’ll choose the former.

Towanda!


I’d be remiss if I didn’t give a shout-out to the trail angels who helped me through this relapse.  Certainly, Teresa and Laurie (and Frankie and Laci!) are spectacular friends.  Pine Nut’s mother, an acupuncturist and herbalist, gave me priceless advice and encouragement by phone.  And, Chloe O’Neill of More Than Lyme inspired me and continues to inspire other adventure-loving Lyme fighters.  Thank you all!

On the PCT: Sidelined with Lyme Disease

Throughout my fight with Lyme disease, I have tried to be patient and calm.  After finding that anxiety and depression got me nowhere, I have tried to embrace a Zen attitude about being ill for an indefinite period of time.  I have worked to relish the good days and accept the bad days, acknowledge the failures but savor the successes.  I don’t feel like doing any of that today.

Today, I feel the need to write a rare, less-than-optimistic post.  Forced off the Pacific Crest Trail because of Lyme, I’m not in the mood to look for the silver lining of my illness, not interested in thinking about the gratitude or perspective being chronically ill has given me.  Stuck in bed, tired, dizzy, achy, and twitchy, I’m finding it difficult to be positive or hopeful.  Today, I need to rant.

I’m angry.  I’m angry that some bacteria that entered my body when I was bitten by a barely-visible tick four years ago has the power to knock me off the trail, which I was hiking as a fundraiser for Lyme disease research.  I’m angry that the same bacteria makes it difficult to hold down a job or go back to school or be in a relationship.  I’m angry that it has changed the course of my life in dramatic ways.

I’m frustrated. I’m frustrated that, according to the CDC, I never had Lyme and that, if I did, it would have been cured a few years ago, after a couple weeks of antibiotics.  I’m frustrated that there are so many unanswered questions about Lyme, that there is so much research that needs to be done.  I’m frustrated that there are so few doctors who are familiar with treating it and that there are so few success stories.  I’m frustrated that many people are far more ill than I am and that it seems as though little is being done to help them.

I’m sad.  I’m sad that being sick made me lose some friends.  I’m sad that a shortage of “spoons” made me flaky and unreliable.  I’m sad that a gap grew between some of my old friends and me, as I could no longer easily relate to twentysomethings who were able to live like typical twentysomethings.  I’m sad that people who’ve known me when I’ve been well aren’t sure how to respond when I’m sick.  I’m sad that our society doesn’t understand invisible illnesses and that a whole lot of health privilege goes appreciated.

I’m grieving.  I’m grieving for the years that I can’t remember and for the year I’ve basically lost to being bedbound.  I’m grieving for the brain I used to have, the intellectual competence and confidence I once knew.  I’m grieving for the way I used to be able to make plans for my future, for the feeling that I could achieve most anything if I worked at it long or hard enough.  I’m grieving for the marathon I haven’t yet run, the Masters degree I haven’t yet earned, the career I haven’t yet found.

I’m tired.  I’m tired of feeling like I’m fighting this alone.  I’m tired of not knowing what my next step should be.  I’m tired of wondering what the spirochetes inside of me are doing, of having no idea that the troops are rallying before they rise up and send me crashing.  I’m tired of being sick.

On the PCT: Acton, Part One

My trail name is Rainbow Dash, but most of my time on the Pacific Crest Trail has thus far been spent Rainbow Trotting, Rainbow Moseying, Rainbow Crawling, and even Rainbow Hobbling.  However, I spent much of the time between Wrightwood and Acton dashing, and I loved every minute of it.

In keeping with the PCT’s “choose your own adventure” style, there were various detours presented to hikers leaving Wrightwood.  To avoid walking in snow over Mount Baden-Powell, we could take what Appalachian Trail hikers would call a “blue blazed” trail; to protect the endangered yellow-legged mountain frog, we could either walk a 20-mile detour with significant elevation gain or roadwalk/hitch up the Angeles Crest Highway.

Naturally, I was not about to miss the summit of Baden-Powell, and I didn’t come all this way to choose a roadwalk over a scenic hike.  Ant, Pine Nut, and I had decided to walk together for a while, but Ant’s plantar fasciitis forced them to elect to blue blaze around Baden-Powell.  And, thus, we had a problem, particularly when I spent two days so worn out that I couldn’t keep my eyes open and perfected the standing nap.

On Day 2 of the Wrightwood to Acton section, after I’d made it down to Vincent Gulch and up and over the 9000-foot behemoth that is Baden-Powell, I was more than 22 miles behind Ant and Pine Nut.  Here’s where the dashing comes in.

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The chaparral near Acton

I slept for 15 hours, woke up on Day 3 feeling “awake, alert, alive, and enthusiastic,” and set off down the mountain and toward the endangered species detour.  I’d slept on snow that night, but I soon found myself in the desert floor; a long day of climbing took me back among snow before plunging me down among the yuccas in another valley.  All day long, I never saw another backpacker.  The trail was quiet, the sun was blessedly warm, and I enjoyed alternately taking in the scenery and losing myself in my thoughts.

By the end of the day, I’d walked more than 22 miles, but Ant and Pine Nut had kept walking, too.  Exhausted, I fell asleep near a stream under pine trees and woke up to frost and sunshine and cool air and prepared for another long day.

Day 4 was the first day that the water sources, which had been replenished by the snowstorm that sent us running for cover, began drying up.  I’d been intending to fill up at Camp Glenwood, a Boy Scout camp in the middle of the woods and where the water report (our go-to guide for water sources) had reported working faucets.  However, when I got there, I was only able to gather a half-liter of water before the flow of water from the faucet was reduced to drips.

Fortunately, I soon came upon some very magical “trail magic”: a container of water and a couple boxes of fruit and veggies left in the woods for hikers.  What’s more, Cheney, a fatherly hiker, spontaneously offered me some of his extra water when he found that another water source was lackluster.

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A cairn under stormy skies

Once I was well hydrated, the miles flew by.  The day was warm, and the trail was easy.  Before I knew it, I was sitting atop a ridge, in a meadow with pine trees, eating unstuffed peppers in a tortilla and thinking about where I should sleep.  I turned on my phone, hopeful that I’d have reception.  I did!  And, I had several text messages from Ant and Pine Nut, the last message of which said that they were staying in the valley below me, just four miles further by trail.  I finished my dinner, laced up my sneakers, and hit the trail again.

By the time I got to camp, 24.6 miles and 4800+ feet of elevation from my tent site of the night before, I was exhausted and completely elated.  Trekking poles slung over my shoulders and arms hanging over my poles, I arrived, victoriously, at the Mill Creek Picnic Area, where hikers were invited to camp.

Pine Nut and Ant poked their heads out of their tent at the sound of my voice, and we shared chocolate and candy and talked until hiker midnight to celebrate.  Riding some remnants of my hiker’s high, I crawled into my tent and fell, happily, to sleep.

Since Ant is still dealing with plantar fasciitis, our daily mileage is more moderate now.  I’ve assured Ant and Pine Nut that my body is probably appreciating their speed, and that good friends are absolutely worth slowing down for, as much as they were worth my speeding up.  Our plan is to walk together through the Sierras, and no one in their right mind would want to rush that section!

However, those two days of cruising down the trail were quite special to me, and there will, no doubt be more of them in the future, further up the trail.  My journal entry from Day 4 concludes, “For the first time in a long time, I felt like me, old me, pre-Lyme me, Rainbow Dash, and it was wonderful.”

To read more about our hike, check out Pine Nut’s blog and Ant’s photos on Cycked!org.