chronic illness

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

“All my bags are packed, I’m ready to go…”

One week from today, I will be in San Diego, preparing to begin my thru-hike of the Pacific Crest Trail. My backpack has been loaded and unloaded many times, as I’ve worked to choose the ideal configuration of the ideal pieces of gear for me. The belongings in my room have been reorganized and packed up to facilitate a post-trail move and to make way for a legion of resupply boxes. The dehydrator my grandmother gave me years ago has run around the clock for weeks, preparing enough dinners to feed me for 4.5 months of hiking. Those dinners are filling 24 boxes of food that are packed, addressed, and decorated and that I’ll be picking up as I walk from Mexico to Canada.

Boxes taking over my bedroomBoxes taking over my bedroom

Boxes taking over my bedroom

While my thru-hike of the Appalachian Trail and subsequent backpacking adventures have made the mental and emotional side of trail preparations easier this time around, there are many ways in which preparing to hike the Pacific Crest Trail is unusually complicated.

First of all, resupplying on the PCT is more difficult than it was on the AT. The towns I’ll be hitchhiking to won’t always be far from the trail, but some will require fairly complicated hikes/hitchhikes. And, while it’s very easy to plan to resupply every three to five days on the AT, the stretches between resupplies are much more variable on the PCT. As it stands now, there’s one spot where I’ll be carrying 14 days of food.

In my mind, one of the biggest logistical differences between the AT and the PCT is that the latter almost requires the use of a map. It’s pretty easy to walk from Georgia to Maine by following white blazes and only looking at guidebooks when there’s nothing interesting to read in a shelter. Not only are maps generally considered important on the PCT, but the go-to maps are heavy! While I carried an entire guidebook from Georgia to Maine, which made what a friend of mine calls “spontaneous planning” (and “planned spontaneity,” for that matter) straightforward, the Halfmile maps of the PCT and the guidebook needed to be divided among the maildrops. Because I won’t be able to plan ahead with ease on trail, I’ve taken more time to plan at home than I did before I left for the AT.

An important focus of the planning that needed to be done is related to water. The PCT is infamously dry, and this winter has been the driest in California since meteorological data collecting began. I’ve needed to learn about the water sources and consider places to drink and camp in order to prevent problems while I’m on the trail. As I’m hiking, I’ll need to continue to check the updated water report.

In a similar vein, to prepare for the PCT, I’ve done a fair amount of reading about the variety of climates I’ll be needing to hike in. I’ve lived east of the Mississippi for as long as I can remember, and I’m very familiar with our humid climate. Whether it’s the hot, south Georgia, near-sub-tropical climates or the chilly alpine zones atop New Hampshire’s 4000’ers, even the unpredictable weather doesn’t catch me off guard. However, I’ve never hiked above 7000’, I’ve never crossed a snowfield with an ice ax, and I’ve never hiked in the desert. For both safety and sanity’s sakes, I needed to research the conditions I might face.

The chaos of a resupply-packing day

The chaos of a resupply-packing day

Once I knew what might await me in the West, I decided it would be ideal to learn more before I made it out there. While I wasn’t able to take a winter mountaineering course, I did get up on several high peaks while they were snow covered. (Not that it looks as though this will be an ice ax/crampons–or even microspikes!–kind of year.) I got a couple of western field guides and learned about the flowers and trees I am likely to see. I participated in an orienteering event (and fell in love with the sport) to improve my compass and map-reading skills. And, because I needed it for post-PCT life, I earned my Wilderness First Responder certification, which made me feel better able to both prevent possible wilderness emergencies and treat those that do arise.

While the primary quasi-deadline for a northbounder on the Appalachian Trail is being out of Baxter State Park before the park closes, a thru-hike of the PCT seems much more weather-dependent. Hike too late/slow, and there’ll be no water in the desert and too much snow in the Cascades. Hike too early/fast, and the Sierras will be a winter wonderland. I think the PCT will demand more flexibility in scheduling than the AT did.

But, maybe that is just because so much of what I’ll be seeing currently feels foreign to me. I think the PCT has felt so difficult to plan for primarily because of the physical distance between it and me. It was reassuring to know that home was never more than a 1.5-day drive from the Appalachian Trail; if I really needed help, I’d be able to get home easily.

Thinking back about it, what could I have possibly needed help with on the AT? Life was so much easier then! I already had Lyme Disease (thanks to a tick bite I’d received  during a month-long section hike the year before), but I didn’t know it yet; ignorance is bliss, right? I’m still working to recover from a late-winter Lyme relapse that succinctly demonstrated that I’ll be dealing with the nasty little spirochetes for the long haul. I’m still on Doxycycline, but, now that I can stay awake and don’t have perpetual muscle issues, I’m bound and determined to keep to my planned start date. That’ll mean that I’ll be covering every inch of my photosensitive (because of the antibiotics) skin during the desert section, but perhaps I’ll find I like wearing more clothing than the traditional Rainbow Dash attire.

Being so recently ill has made the goal of my hike–to raise money for the International Lyme and Associated Diseases Society–even more important to me. If you’d like to support ILADS in their research and education efforts, please consider a per-mile sponsorship; even one cent per mile is a wonderful help!

So, what is there left to do in the week before the wheels touch down? Continue healing. Get the latest water report. Collect the contact information of friends and friends of friends near the trail. Reach out to friends and family before I lose touch with civilization again. Enjoy a send-off party in my hometown. Breathe.

A fiery rainbow at the farm tonight

A fiery rainbow at the farm tonight

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!

Every White Blaze, Part One

First things first:  As I was driving backIMG_20141209_115509_511 from North Carolina, I learned that the story of my upcoming thru-hike of the Pacific Crest Trail to benefit Lyme disease research had been published on Kentucky.com.  It was featured in the Lexington Herald-Leader today, which was really special and exciting.  If you’d like to check out the story, click here.  And, if you’d like to read more about my Lyme disease fight, you can read this post.

Anyway, what I’d like to write about today was what took me to North Carolina.

There are as many ways to thru-hike the Appalachian Trail as there are thru-hikers.  There are hikers known as “purists” or “white blazers,” who insist upon walking every mile of the AT from Georgia to Maine.  There are hikers who are more lenient about the path they follow.  They might “blue blaze” by taking side trails, “yellow blaze” by hitchhiking to a town further ahead on the trail, or “aqua blaze” by paddling up the Shenandoah River rather than hiking through that park.  (Rumor has it that there are also “sky blazers,” who take the gondolas up Wildcat in New Hampshire, but I’ve yet to meet one.)

When I thru-hiked the Appalachian Trail in 2012, I made a point of walking past every white blaze, not because I thought there was something superior in that sort of hike but because I wanted to see the entirety of the trail.  When I got to Maine and broke my foot, I had to relax my guidelines; however, before that point, the only section I’d missed was 20.7 miles between Deep Gap and Rock Gap in southern North Carolina.

I’ve already written about the bitterly cold night I spent sleeping like a sardine in Muskrat Creek Shelter.  When that night finally gave way to dawn, I quickly packed up my gear and, after attempting to thaw myself by the fire for a little while, hiked on.

I’m generally not a hiker who enjoys spending a lot of time in trail towns; at this point, I usually sleep better in my tent than in a strange bed in a hostel or crowded hotel room.  But, that April morning, I knew that I needed to get myself to town to preserve my sanity.  As the section hikers and hikers with smartphones told the rest of us, the temperatures were only expected to drop in the coming 24 hours, which meant that I was in for another sleepless night, unless I found a way to get to town.

Checking the guidebook, I happily discovered that a shuttle to a local hostel could be procured at Deep Gap, only a few miles north.  Shivering, but with new-found enthusiasm, I hiked onward.

When I reached the parking lot at Deep Gap (a parking lot at the end of a 6.2-mile, uninhabited, gravel United States Forest Service road), I got my phone and guidebook out of my pack, found that I had a tidbit of service, and called the hostel.

“Good morning!” the owner of the hostel said enthusiastically.

In spite of the cold, I smiled at his energy.  “This is the hostel that picks hikers up from Deep Gap, right?”

“Well, normally, yep.  But, my wife and I are down in Florida.  I hear it’s real cold up there.”

Apparently, the cold brought out unusual persistence in me.  For the next half hour, I dialed number after number as I was referred to local trail angels and potential places to stay.  Had I been alone, I might have given up and just stuck it out, but groupthink is a powerful thing.  As I worked to find a ride out of Deep Gap, hikers continued to walk north and stopped at the Gap to learn about the results of my phone calls.  When I eventually reached Ron Haven — a man who owns several motels in Franklin, coordinates all sorts of hiker services in that town, and promised to come pick us up for $45 — eight other hikers planned to join me on the ride.

I was hiking on a budget, but I decided that $5 for the ride and $10-15 for a shared hotel room to avoid another sub-freezing night would be worth it.  At that point, I actually felt like getting warm was essential to my staying on the trail, and I wasn’t ready to give up my dream of thru-hiking yet.

So, an hour later, when Ron Haven pulled up in his big pickup truck, I climbed aboard, pulling my backpack onto my lap.  I shivered the whole way to town.

In Franklin, I got warm and caught up on sleep.  I purchased a neck gaiter and gloves, and I enjoyed a few baguettes and hummus.  (Because comfort food.)  When the next morning rolled around, I felt ready to brave the cold and hit the trail again.

I soon learned that I was in the minority.  A few of the hikers I’d gotten the ride to Franklin with were getting off trail for good, some were planning to stay in town for a while longer, and others were content in skipping ahead a bit, to one of the regularly scheduled stops of Ron Haven’s free hiker shuttle.  It turned out that I was the only hiker interested in going back to Deep Gap, which meant that I faced a $45 bill.

I deliberated about what I should do, but determined that skipping ahead would probably help rather than hurt my psyche.  You see, there’d been a hiker who’d been “pink blazing” me (i.e., changing his hiking plans to match mine and driving me crazy) since early on in Georgia.  He had decided not to stop in Franklin but was planning to wait for me that day.  I was anxious to lose his company, and I realized that I was being offered the opportunity to do just that.

And so, I skipped ahead to Rock Gap.  As a result (and because I stopped signing shelter registers for a while), I avoided my pink blazer and met the man who became one of my best friends and hiked 1000 miles with me.  Not paying for the ride to Deep Gap was one of the best decisions of my thru-hike.

However, after hiking the remainder of the trail (even the miles my broken foot had forced me to skip), I knew that I wanted to walk the 20.7 miles that I’d missed in North Carolina.  It was logistically complicated to do so when I lived in New England, but I moved back to Kentucky at the end of November.

Since I had the last two days off work, as soon as my shift ended on Saturday evening, I jumped in my station wagon and headed south.

To be continued…