Lyme Disease

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.

On the PCT: Warner Springs

Anyone who has ever had a hiking partner knows how special they can be.  Hiking partners are people you can stand to spend “23.5 hours a day” with.  They’re the ones who are able to lift you up when you’ve fallen, physically or emotionally.  They’re the ones with whom you share backcountry culinary advice (such as the wonders of cold Idahoan potatoes) and Dr. Bonner’s soap (when it’s days before the resupply box containing shampoo arrives) and something magical called Badger Balm.  They’re the people who are there to hear you gasp at beautiful scenery and who enjoy retelling stories from the “Type II” fun you experienced.  I generally hike solo, but the time I’ve spent with my hiking partners, such as Quiver, is time that I treasure.

From Mount Laguna to Warner Springs, I was treated to the company of another 2012 Appalachian Trail thru-hiker, SunRoof.  I met SunRoof when he came out of the woods and into the Burnt Rancheria Campground at Mount Laguna.  After I’d identified myself as Rainbow Dash, he hurried to give me a hug from Gluten Puff.

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SunRoof and me

Six miles into my hike the next day, I stopped to rest and was caught by SunRoof.  We spent the next three days hiking and camping together.

For most of that time, I felt great.  SunRoof and I put in three days of 19-21 miles, and I enjoyed every moment of them.  Time and Doxycycline were working their magic, and I no longer felt ill.

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The rain shadow effect

I was having a blast contour-walking in the high desert, weaving in and out of shaded cirques.  I was loving the array of colors the desert bloom brought to the desert and chaparral.  I was enjoying the cool nights, the breezy mornings, the mid-day siestas, and the invigorating evening air.  I’d met all of the hikers in our bubble and was appreciating the community formation.  I’d figured out how to drink an appropriate quantity of water and rehydrate my food without a stove.  I was hitting my stride.

However, I started to notice a nagging pain in my left heel.  I doctored it by cutting some of the padding off the top of my shoe–and then by adding a moleskin heel lift inside my shoe.  Thirty miles later, I needed to do the same with my right foot.

Maybe I was walking unusually in order to compensate for the knee pain I’d written about in Mount Laguna.  Or, maybe, thanks to Lyme hijacking my spring marathon plans, I was not conditioned enough to be hauling large quantities of water up, down, and around mountains.

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Sunrise from a high meadow

In any case, when I took off my shoe at the Warner Springs Resource Center it was obvious that something was very wrong:  Where the profile of my leg should have been concave above my heel, it was convex.  I had Achilles tendonitis.

So, currently, I’m RICEing in Warner Springs and trying to figure out what lies ahead.  Is this just a little road bump that I’ll recover from in a few days, or will healing be more complicated than that?  Here’s hoping it’s the former!

If anyone has any advice or words of encouragement, they’re more than welcome!  I feel frustrated, but I also know that it’s still early in the game; there’s plenty of time to get to Canada.

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"I know he'd be a poorer man if he never saw an eagle fly..."

On the PCT: Mount Laguna

I’m fairly certain that the only thing the Appalachian Trail and the Pacific Crest Trail have in common is that they’re both long.  While the AT features lots of little ascents and descents, a hiker on the PCT can spend an entire day only going up or downhill.  While the AT is a “long green tunnel,” the PCT is a string of scenic vistas.  While the AT is wet, the PCT is dry.  Very dry.  And, while I rarely saw hikers on the AT, the PCT is ridiculously crowded.  (I’m only half kidding about that one!)

As I’m typing this, I’m at Mount Laguna (mile 42.6 of the PCT) enjoying a zero day.  I don’t usually take zeroes early in a hike, but my body needed it.  Hiking with/for Lyme has presented some new challenges, and the psychology of my hike thus far has been interesting.

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Getting dropped off at the southern terminus

It turns out that Lyme Disease looks an awful lot like heat exhaustion and dehydration, and monitoring my body for signs of any of the three (when I’m on Doxycycline and all three are very possible) is trying.  However, the more ill I feel, the more determined I become to hike the entire trail and raise the $2385 thus far pledged for the International Lyme and Associated Diseases Society.

It probably doesn’t help that it seems I hear a new story about Lyme everywhere I turn.  Bat and Brian, two other thru-hikers, have both had Lyme and described the struggle to get adequate treatment.  My mother heard from a family friend whose eight-year-old grandson was just diagnosed.  And, then there’s Mary Kate, a woman whose kindness I’ve written about before:  When she pledged to support ILADS through my hike, she told me of a family member’s two-year battle with the disease.  I’m carrying these stories with me and hope that, in some small way, I’m able to make a difference in our fight against this epidemic.

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Houser Ridge, looking more beautiful than deadly

But, day to day, I’ve got smaller problems of my own to figure out.  First up was Houser Ridge, an exposed climb that a hiker hoping to hit Lake Morena (and water) on her first night out would need to climb in the afternoon, when the sun is burning the ridge (and not just the Doxycycline-ingesting hiker on it) to a crisp.  I’d rested in the shade and had plenty of water before starting my ascent; however, while I was climbing easily enough, the heat took its toll, and I spent 45 minutes working to cool off under a large rock before going on.

When I reached camp that night, I was on the verge of mental and physical collapse and was revived by the kindness, orange slices, and ice cubes of Dennis and Marie, two trail angels who sent me on my way with hugs and Salon Pas.  (Dennis and Marie, if you’re reading this, thank you so very much!)

I vowed to have an easier hike on my second day out, and I followed through with my goal, hiking only 12 miles and setting up camp in the shade of Fred Canyon at 12:30.  I enjoyed napping, snacking, and talking with a Belgian couple (Andre and Lian) who had been wilderness guides for years.

The day I hiked into Mount Laguna was a low-mile day; I only hiked 10 miles before arriving in the resort village.  The 10 miles were some of the most beautiful hiking I’ve ever done, let alone my favorite section thus far of the PCT.  I broke camp early and was on western slopes, so I enjoyed a liberating 2.5 hours without sun protection.  When the sun did shine down in full force, it was to accompany me over a glorious ridge and among tall oak and pine trees.  I doubt there will ever be a time when I will walk among such trees without feeling a deep happiness, even while struggling with more superficial issues.

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Trees, glorious trees!

One such issue is my knees.  This spring’s relapse of Lyme had hurt them, and its timing hadn’t allowed me enough time to regain strength before I needed to carry 30-40 pounds along mountainous desert terrain.  My main objective in taking a zero at Mount Laguna is to give them time to heal a bit from the stress of the last few days.  Getting a chance to let some of my tiredness and dizziness subside is just a bonus!

Thus far, the PCT has been more amazing and more challenging than I’d expected.  As I think about what lies ahead, I’m resolving to choose joy.  If I hurt or the trail is too difficult for me on a given day, I’ll give my body permission to take it slow.  Gone are the days of “no rain, no pain, no Maine.”  My body has dealt with too much to do that.  Now it’s more, as Grandpa (one of my favorite Class of 2011 hikers) always said, “Miles and smiles.”

My Hopes for My PCT Thru-Hike

Hiking a long-distance trail is a wonderful opportunity to stop and think about where you’ve come from and where you’re going.  I think it’s even better to start sorting through the questions you’ll be asking yourself before you hit the trail.  That could happen as you’re gathering your gear, as you’re dehydrating meals, or as you’re waiting out a five-hour layover in Atlanta.  I chose the last option.

“All men should strive to learn before they die, what they are running from, and to, and why.”
James Thurber

When I set off on my thru-hike of the Appalachian Trail, I had some very important questions I intended to answer as I hiked.  How did I want to live my life?  What did I want to do?  Where did I want to live?  How did I feel about love and relationships?  Thinking about all of these questions simply didn’t happen while I was walking, but I considered them in the trail’s quiet moments, when I was filtering water, making dinner, or snuggled inside my sleeping bag at night.  Late night musings triggered a few existential crises along the trail, but, while I didn’t climb Katahdin with my questions fully answered, my thoughtful time on the trail allowed me time to sort through some of my ideas and perspectives.

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Gear for the PCT

So, what do I plan to ask myself on the PCT?  What do I hope to see and hear and feel and learn and experience while I’m out there?

In some ways, this hike feels as though it will be a very different hike for me, as I’m coming from a different place; no longer am I fresh out of college and working to figure out who I am.  I’ll be asking myself where I’m heading in the short-term, but I think I have a grasp of my longterm trajectory.

Many of my hopes for the PCT are concrete.  I want to experience the beauty of redwood forests and the temperate rainforests of the Pacific Northwest.  But, I don’t want to just walk through the less-magnificent places; I want to embrace them all.  I am excited to develop a love of the West Coast’s mountains and forests like that I have for the Appalachians.  I look forward to cultivating friendships with other hikers, and I am happy that I’ll be able to stay in contact with old friends — with whom I’ll share tales from the trail — while I’m hiking.  And, I am interested to listen to the stories of others who’ve been fighting Lyme who I’ll be meeting along the way, as I’ll be hiking to raise $0.81 per mile for the International Lyme and Associated Diseases Society.

Some of my goals for the hike are more abstract, requiring more head space.  I want to figure out my battle plan for Lyme Disease, now that I know it’s going to be a chronic thing.  Should I continue to pursue treatment for relapses (when they occur) in Kentucky, or should I go somewhere Lyme is more common?  Should I try to continue with “band-aid solutions,” or should I try to pursue any of the more aggressive, definitive treatments that others have undergone?  Should I continue to use antibiotics to knock down my bacterial load, or should I try any alternative therapy?

I’d also like to do some contingency planning about my future goals.  When I got sick this spring, I had to give up my seat in the outdoor leadership program I was hoping to attend; I thought taking out loans for a year of schooling when I can’t guarantee my health for even a few months didn’t seem like a good idea.  With Lyme, there’s no middle ground for me:  I seem to either be overtly healthy or so sick that I’m stuck in bed.  Within these parameters, I need to set some reasonable but meaningful goals for the next few years.

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...And in rainbow order!

In the meantime, I’ll just work to put one foot in front of the other from Mexico to Canada.  I’ll take time to get lost in the beauty around me, make time and space for awe and inspiration.  I’ll explore quirky trail towns and take zero days in the woods.  I’ll hike Mount Whitney and swim in glacial lakes.  I’ll collect stories to cherish, mental images to meditate on, pictures to treasure, and moments to laugh about when times get rough.

In every Unitarian Universalist sense of the word, I fully recognize this hike is a gift, and I am a deeply grateful recipient.

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Heading to the trail