Lyme

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: Mojave

On May 27 last year, I was in the hospital in Kentucky.  My day started with a four-hour surgery to correct a congenital kidney issue likely exacerbated by chronic Lyme Disease, and included lots of drug- and Lyme- and surgery-induced haze and panic attacks and pain.

On May 27 this year, I enjoyed a big-mile day on the Pacific Crest Trail.  Pine Nut and I hiked 30 miles along the California Aqueduct, through a windfarm, down into a canyon, and up over the hills south of Mojave.

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The PCT in the windfarm

Our epic day of hiking, the furthest of Pine Nut’s life and one of my longest, began at 3:00 in the morning, when we woke up ridiculously early to get a headstart on the desert heat. By 4:00, we were winding our way along the aqueduct, struggling to distinguish between PCT markers and signs warning about death to aqueduct swimmers.

By sunrise, we had put in a respectable amount of miles and were glad we did so, as the sun began warming the landscape in earnest.  The colors of the sunrise painted the sky behind the first on-trail Joshua trees we’d come across, and I smiled at the spectacle.

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Joshua trees at sunrise

The morning grew hot and then hotter as we followed the closed aqueduct through the desert.  The dirt road and the earthen banks enclosing it acted like an oven, and I felt as though I was being slowly cooked.  Large juniper bushes were a Godsend, and Pine Nut and I cooled off periodically in their shade.

In time, the cement aqueduct led us to a windfarm, through which we then hiked.  Having never seen a giant, modern turbine up close, I marveled at their size, grace, and power.  Fortunately, the turbines were barely moving; while the region experienced 70-80mph winds last week, the air was nearly still when we passed through.  Given that the Mojave area is where valley fever is endemic, I considered the stiflingly still air to be ideal.

On the Appalachian Trail, doing a “12X12” — walking twelve miles by noon — is a goal and an honor.  We blew that milestone out of the water!  By 3:45, we’d hiked more than 23 miles and happily took a long break in the shade of Tylerhorse Canyon.  The squawking Stellar blue jays ensured we didn’t fall asleep, even though the tree cover and trickling water were dreamy.

Eventually, we got up and shouldered our packs again, riding a couple of hiker’s highs up and over some significant climbs as the sun set and the moon cast shadows onto the ground.

When Pine Nut’s phone declared that we were at mile 348.57, we cheered and high-fived each other.  Then, we set about looking for a campsite, as it was three minutes before “hiker midnight.”  At mile 348.58, we came to a side trail that made a rocky and sloping campsite.  Perfect!  (My standards are lower on marathon days.)

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Another shot of the windfarm

Happy to be at camp and thrilled at having accomplished such an epic hike, I quickly erected my tent and crawled inside, cozy and content under my quilt.  Needless to say, I slept very, very well.

Before I drifted off, I thought about what a gift and privilege it is that I’m able to be out here.  At my most ill, I wondered whether I’d ever hike again, let alone do another long trail.  When I vowed to hike the Pacific Crest Trail for Lyme Disease research if I could ever again backpack, I thought I was engaging in foolishly wishful thinking.

But, here I am.  Scars on my abdomen, antibiotics in my pack, and memories of a bed-bound year etched into my mind, I’m hiking northward.  Gratefully, I’m putting one foot in front of another over and over again, apparently sometimes for thirty miles in a day.

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

AWOL no longer, cell phones, Lyme Disease, and a cup cozy

I didn’t fall off the face of the Earth.  I just felt like I had.

First of all, this past week was my last spent selling cell phones.  After AmeriCorps ended, after I’d hiked New Hampshire’s 4000-footers, and after the tree planting crew I’d been on in Vermont was done planting for the year, I’d returned to my family’s hobby farm in the Northern Bluegrass Region of Kentucky and been fortunate to find work at a local wireless store.  I learned a lot, both about technology and about sales, and I’d feel competent asserting my customer service skills in a resume.  However, my first foray into the world of retail was everything this highly sensitive introvert imagined it would be, and I’m glad to be able to have some time to think and breathe and work on the farm and see my family and friends and prepare for the Pacific Crest Trail.  It will also be nice to reenter the blogosphere.

If I’m honest with myself, part of the reason that I have been reluctant to blog is because I’ve been reluctant to think about the PCT at all.  And, I’ve been reluctant to do that because I’m petrified that Lyme is returning.

My PCP (who has Lyme herself) in Massachusetts warned me that Lyme never really disappears; rather, it goes into remission.  Everyone I know who has had Lyme insists that, like a trumpet vine plant (or kudzu?), the bacteria that cause Lyme never really, completely, utterly, die out in a person.  I just wanted to imagine that this remission would last a nice long time.  Maybe it will.  But, like anyone who deals with a chronic disease that ebbs and flows knows, every unexplained health issue starts the flood of questions and worry.

Are my leg muscles twitching because I need more sodium?  Are my knees sore because I’ve been standing on concrete too much?  Are fluorescent lights to blame for my headaches?  Am I excessively tired just because I’m stressed?

I’ve got a doctor appointment tomorrow, so perhaps that will make things better, either with explanations or with Doxycycline.

All that said, I do have some fun news to share:

First, I’ve been speaking at meetings around Kentucky lately, both at Lyme groups and at churches.  I’m presenting for the Kentuckiana Lyme Support Group’s monthly meeting next week.  It’s been interesting to talk with people about my hikes and experience with Lyme and listen to their stories in return.Lyme cozy

Second, my amazing sister is supporting my hike of the PCT for the International Lyme and Associated Diseases Society with a cup cozy that she’s selling on her Etsy shop.  If you’d like to drink coffee or tea in style, check out Kelly’s store.

More to come soon!