Two Rails

I haven't felt well today. A lot of general pain, fatigue, soreness. On days like this I find it helpful to look at old pictures and reminisce a bit about highlight moments of my life. I started noticing something this time. A lot of what I consider transcendent moments in my life were immediately preceded by or also included rather unpleasant aspects:

Fresh air with just a little bite to it. A muted wump wump wump of fat bike tires the only sound to be heard. Fresh powder clinging to tree branches. Peaceful solitude. 

I started the day fighting severe nausea and losing my breakfast. I felt horrible all morning and weak most of the day. 

Warm with a light mist of rain. 500 year old rice terraces as far as the eye can see. 

Getting here involved a 15 hour mostly overnight, chilly, smokey, bus ride. Followed by a difficult bike ride followed by more lack of sleep due to oppressive heat and humidity and no air conditioning. 

A cool day with cold biting gusts of wind. Fresh clean air. Roar of a waterfall. Expansive scenery. 

That morning I laid in bed for an hour and a half after waking up trying not to move so I wouldn't throw up. I felt horrible all morning and not terribly great for most of the hike to and from here.

Perfect temperature. Clear air. Clear sky. The longest, most spectacular sunset I've ever seen.

We were almost stranded with no place to stay in the middle of a sparsely populated fjord. A long shot phone call, last bus of the day, and a short hike later we got the last place available to stay. 

*Update - 7 Nov 2012*

Still feeling pretty horrible in the soreness and pain realm, but I've had a pretty good past two days. Some great mountain biking with friends old and new, a couple fun projects at work, and a new service opportunity that I'm pretty excited about. A quote from Rick Warren came to mind tonight. I don't remember when or where I first heard it:

"I used to think that life was hills and valleys – you go through a dark time, then you go to the mountaintop, back and forth. I don’t believe that anymore. Rather than life being hills and valleys, I believe that it’s kind of like two rails on a railroad track, and at all times you have something good and something bad in your life. No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for."

First Bike Tour

I was dragging two bike boxes through an air terminal in Guiyang, China and scanning the crowd for my friend. Guiyang was our meeting spot for the beginning of a three week tour of southern China. The plan was to spend two weeks riding southeast from Guiyang to Guilin where we'd spend the last week hanging out and seeing the sights. We both did a fair amount of mountain biking, but neither of us had attempted anything like this before.

She was easy to spot, the only westerner in a sea of Chinese. This would become a common theme for much of the next three weeks. We were quite the spectacle every where we went, two westerners on bikes. She had arrived the day before and arranged a couple spots at the hostel in town. That would also become a common theme for the next three weeks - she knew a decent amount of Chinese and I knew nothing. She made all the logistical arrangements, ordered food, etc. I made sure the bikes worked...

We set off the next morning from the hostel on our mountain bikes laden with rear racks and panniers. It was the first time either of us had ridden with a load like that. We worked at getting used to the new handling characteristics of our heavy bikes while not getting run over in the heavy traffic - this was either going to be the best idea we'd ever had or the stupidest. At the moment I was leaning toward the later. A very long story a little bit shorter: our itinerary went out the door on day two when both bikes broke down. From there we just started winging it:

Longli -15 minutes of fame as a karaoke star. A girl got up on stage and gave me the flower

Kunming - I failed at my job so we had to head here to get the bikes repaired. This incident is what sparked my interest in learning how to build wheels and repair bikes.

Lijiang - a curious kid checking out our bikes

Tiger Leaping Gorge - mudslides had closed the road. Crossing the mudslides was a bit sketchy but there was no traffic! Pictures can't do that place justice, absolutely amazing!

Kaili - we were told there was a place to do laundry up on the roof. We ran into this guy and his family up there. He was really happy to talk and tell us about the area and places we should visit.

Longji - Dragons Backbone Rice Terraces. 

Li River

Guangzhou - walking through the park we heard some music and went to investigate. Pretty soon I found myself caught up in the middle of it - not exactly by choice

It ended up being nothing like we'd planned or expected. Instead of two weeks on a bike and one week hanging out, it turned into three weeks of mixed bike and bus rides through places we had no idea we would go to. Again and again we saw amazing scenery and met the friendliest people you could ever hope to meet. It was incredible and fully converted me to the idea of bike touring. It wasn't the easiest form of travel, but I'm convinced it was the best idea we'd ever had.

Service

As I woke up this morning a few choice swear words went through my mind before I started laughing – I could barely move. Again. My hands were swollen, my muscles from head to toe were sore and in pain. I'm getting more used to it now, as much as you can get used to that sort of thing, but its taken awhile.

There's one morning soon after being diagnosed with MCTD that's still vivid in my mind. I felt a lot like I did this morning, but I wasn't used to it yet and didn't know how to deal with it. It was yet another morning of pain and sure to be yet another day of pain. Pain consumed my thoughts and I was becoming increasingly depressed by it. I felt like I was close to a breaking point - I couldn't live like this. The thought of suicide came to mind. I can't remember ever having that idea come to mind before or since, but at that moment it was there. It was a real consideration. It scared me.

I needed to do something to deal with the depression that was getting worse. I needed to do something to get my mind off the constant pain. I started brainstorming about what made me happy. Not just oh that's fun but actual joy. The answer I settled on was service. I eventually ended up volunteering with a group on campus that I was also now a registered member of – the University Accessibility Center. I learned about them from my college counselor who made me register. For good or bad I never used any of their services, but I did learn they needed volunteer note takers. I decided I could do that...despite the fact that I had lost a ton of hand strength and mobility and writing was physically difficult for me at the time...

My first assignment was to help a blind student take a test. Perfect! All I had to do was read him the questions and fill in the answer he gave. Very little writing and the dude was blind so he'd have no idea I was struggling to move the pencil! It was foolish in my current physical state to volunteer as a note taker, but it turned out to be a great decision. He could sort of see large objects in a shadowy form, but for most intents and purposes he was totally blind. He was also graduating from the business program at the top of his class and had a good job lined up for when he graduated. It was incredibly inspiring and gave me a feeling of hope that I desperately needed at that time. It also got my mind off my own problems and pain for a little while.

I continued volunteering as a note taker for two more semesters after that, each person I helped had such an incredible story it made my problems seem insignificant. The acts of serving also helped me feel better about myself and focus less on the pain surrounding me.

For the most part now the medication I take and regular exercise keeps my chronic pain minimal. I do still have flare ups like I've been dealing with the past couple weeks where the intensity of the pain increases significantly. Service is still one of the coping mechanisms I use to help deal with it. If I volunteer to do something for you, please let me do it. More likely than not I'm doing it because I need the distraction and it makes me happy. I'm really doing it for me, not you. I mean I'm nice...but I'm not THAT nice!

Crusher in the Tushar

Another Crusher has come and gone. And well, to be honest I'm a little lost for words to describe the experience. 69 miles and 10,500 feet of climbing on paved and dirt roads. There is no way for it to be anything except painful.

After The Crusher last year I was at a Cannondale dealer event where I ended up on a group road ride with Tim Johnson, one of the top cyclocross racers in the US. I got the chance to talk to him for a few minutes and during the conversation he said something that has stuck with me, 'races like The Crusher teach you a lot about yourself'. 

The Crusher in the Tushar is a challenging race that in some ways I have no business taking part in. It's out of my league and I now have two dead last finishes as evidence of such. On the other hand this crazy race has been an unexpected tool in my life. For which I am incredibly grateful.

Last year the race was very much about me. It was about learning what I could or couldn't do. It was learning about how my body would react to a level of stress that had never been placed on it before. It was learning about continuing forward when all I really wanted to do was quit. It was about learning how to live with pain. 

This year the race was about others. Specifically to help raise money and awareness for Southern Sudan Humanitarian in their work to ensure children in Southern Sudan have the opportunity to go to school. I used my snow bike as a publicity stunt to do so. I knew it would make the race more difficult. I knew it would hurt. I didn't know if I would finish but it was important for me to try. For the past several years I've read newspaper articles, books, watched a documentary, listened to many NPR stories about the conflicts in Sudan. This was a tangible way for me to do something that could help. 

As far as nuts and bolts of the race go:

I was remarkably calm the night before the race. It was one of the best sleeps I've had in a long time. I pushed myself as hard as I could for the first 18 miles. I knew I needed to average a higher speed than I had on training rides if I was going to meet the first cutoff time. I made the cutoff with about 15 minutes to spare and then toned it down from there so I wouldn't burn out too soon. I enjoyed the downhill section, the rain and clouds made the scenery look even more stunning. There was a headwind on Hwy 89 that once again began sucking the motivation to continue right out of me. The sag wagon caught up to me earlier this year and followed me for closer to 5 hours instead of 3 like last year. The second climb was hell. I felt in much better shape than last year, but the wheel weight of the fat bike was obvious. I was determined to keep moving however slow until either I crossed the finish line or they told me my time was up. The last 19 miles of the race continued to be the most difficult for me, but I wasn't feeling sick like last year. While starting the final climb I was informed that there was a group of people at the finish line who were aware of why I was riding such a ridiculous bike for such a race and they were there to cheer for my finish. The fact that people had stayed or come back brought some tears to my eyes. It took me just over 9 hours 30 minutes to cross the finish line this year. 

Indian Ladder

I started rock climbing about a year before the MCTD diagnosis. My college roommate at the time lived for the sport. We were mountain biking buddies and pretty good friends in general. It turns out that good places to mountain bike are often also good places to rock climb, so despite my fear of heights I found myself learning about rock climbing. I grew to enjoy it, but never fully fell in love with it.

When MCTD hit and I couldn't make a fist, barely button a shirt, and barely get up off the floor. It was actually through climbing, and some serious medication, that I was able to build back strength and mobility. Prior to MCTD I had a really strong grip, good for climbing! With MCTD not so much so. Ultimately my lack of hand strength is why I gave up climbing. It was too frustrating to spend time building hand strength only to have it lost with an arthritis or lupus flare up and be forced back to climbing beginner routes.

Last weekend I ended up in Moab at the base of a very short, very simple scramble/ladder climb. No ropes or gear needed. It was at the end of the day and I was tired, so the lack of gear actually scared me. No back up. I wanted to go up but was also scared to do so. Scared of falling.

     S: "Are you going up Wes?"

    M: "Yes, he is"

    Me: "I'll give it a try"

There was a section toward the start that was narrow enough that I couldn't move to the next foot hold. My back was against one wall and my knee would lodge against the opposite wall before I could get it high enough to reach the foot hold.

    Me: "I don't think this is going to work, I can't use my legs and I don't have the upper body strength  to pull myself up"

    Friends: "You can make it!"

    Me: "No really, I can't move my leg and I can't pull myself up"

    A: "I'll come down and pull you up"

    Me: "Thats okay, I'll just wait at the bottom"

    Friends: "No"

The next thing I know I have a friend right above me extending his hand to pull me up through the narrow section. And the next section. And the next. And next. I was a lot worse off physically than I originally thought. My muscles were weak, my joints not moving very well. But, with the help of friends I made it to the top. And yeah, I needed help getting back down as well. It was pretty pathetic.

During this whole event I mostly felt stupid and frustrated. I don't like being bad at things. I don't like needing help. I don't like feeling like a bother to others. I didn't like that I couldn't scramble up something that EVERYONE else did with ease.

After some more time to think about it I'm feeling grateful for their encouragement and help. I enjoy feeling independent and not needing help from others. It was a good reminder that sometimes I do need help and I'm fortunate to have people around me ready and willing to offer it. It was also a lesson that I really need to work on my upper body strength...

White Rim Trail

The White Rim trail is a jeep road in Canyonlands, that other National Park in Moab, UT.  About 90 miles of dirt with a bit of paved highway forms a 103 mile loop. There are no services along the route other than pit toilets at the spartan campgrounds every 10 to 15 miles or so. The campgrounds are by reservation only and due to popularity of the route you usually have to reserve them a year in advance. Because of the length and difficulty of the road and vast amount of scenery to soak in, most people will take three days to travel it. These are the smart, reasonable people. You don't need a permit to use the road, only to camp along it. So if you can knock it out in one day... 

I first heard about the White Rim trail about six or seven years ago while on a multi day rafting trip through Canyonlands. Some people in our tour group had been on the three day biking version of the White Rim and were going on and on about how scenic it was. I like scenic and I like biking so my ears perked up. At the time I considered 20 miles of mountain biking in a single day to be a huge feat. The idea of 100 miles of three days sounded intimidating, but still kind of interesting. A few years later as I got more into mountain biking I heard about the idea of people riding the White Rim in one day, it made the logistics much simpler. I'd done some longer more difficult rides and wasn't as intimidated by the sound of it anymore so it was put on my list of rides to do! A few trips have been planned in the past three years, but fell through at the last minute because of weather or illness. But this last Saturday everything aligned and I got my chance at riding the White Rim...in one day.

I drove down to Moab with two friends Friday afternoon and met up with most of the rest of our group for dinner. There would be ten riders in all with two support vehicles. Some stayed in town, others of us camped near the start of the trail. It was a beautiful night with clear skies and bright stars so I laid out my sleeping pad and bag and settled in for some star gazing. Between the earlier than normal bedtime and nervousness about the next day there wasn't much sleep. I made good use of the time though, did I mention it was a great night for star gazing?

Morning arrived soon enough and I was a bit nervous. A handful of times each month I wake up feeling like I've been run over by a truck and this was one of those mornings. I kept reminding myself while getting ready that the biking would help the pain and soreness fade, it's one of my best pain relievers after all. The nervousness was amplified a bit by my bike choice for the ride, my Fatback snow bike. I understood the trail to be mostly rolling jeep road with three climbs and several sandy sections. I don't know, the Fatback just seemed like a fun choice until the morning of.

The group met up at the designated start point and we set up off the paved road section of the loop. The morning was warm, no need for arm warmers or the like. That's normally a good thing, unless you're planning an all day ride in the desert. It was going to get a bit hot.

Soon we hit dirt and dropped down the Shafer switchbacks. We were full of excitement and heading mostly downhill. Add in some amazing scenery and life was pretty great! The first 50 or so miles went by like that for me, great riding and fantastic views. We planned to regroup and eat lunch at the top of the first big climb, Murphy's Hogback. I was starting to get hungry before then though. On long rides its really important to keep enough food and water in your system otherwise your energy level will drop and your ride could be over. The general consensus is if you're feeling hungry or thirsty you've already gotten behind and its too late to make up the difference. The afternoon was going to be hot and I was going to run out of energy, how hot and how soon were the lingering questions.

Around mile 52 I made it to the top of the Murphy's climb and enjoyed some food and cold water under what little patch of shade I could find. I was having a great time and not too worried about what lay ahead. Had I been more worried maybe I wouldn't have forgotten to reload on my margarita flavored Shot Bloks. Another component of a long ride, or hot weather ride, is keeping salt in your system. This can be done with a variety of sport drinks or salt supplements. For this trip I'd decided to go the supplement route and then proceeded to forget to resupply for the hottest part of the day.

The miles continued on. The day was getting hotter, I was getting more tired, but the scenery was still breathtaking and a great distraction from everything else. Eventually the second big climb was upon me, Hardscrabble. Steep and loose, it was questionable if I'd be able to ride up it at all even with fresh legs yet alone almost 74 miles into the ride. I walked. And walked. As I ascended the steep hill my energy quickly dropped. The fun was over and I was entering survival mode. The road became more and more sandy which the Fatback does pretty well in, but you still have to have the energy to pedal. I was peddling slow and kicking myself for underestimating how much I should have been eating earlier in the ride and for forgetting to restock on my sodium Shot Bloks at lunch. I knew I wasn't in a good position and would need help. I debated just stopping under the first scrap of shade I could find and waiting for the support truck to catch up. It felt like giving up though and I was too proud to do that. I decided to maintain forward motion no matter how slow and just hope the support truck arrived sooner than later! A group of guys in a Jeep passed me. Stopped. Reversed. Told me I didn't look so good and asked if I wanted a bottle of Gatorade. YES!!! I stopped in some shade and sat to drink my sweet gift of electrolyte goodness. I moved my legs into a cross position and they instantly seized in a cramp. I drank half the Gatorade and continued on still feeling weak and now with my left quad and right calve muscles cramping up.

I kept moving forward and looking behind in hope of the support truck moving into view. Eventually I saw a cloud of dust approaching, could it be?! Nope. It was a truck, but not from our group. Just then I noticed there was another truck behind it...my support truck! I had gone 85 miles and I was calling it done. I stuck out my thumb and gratefully accepted a ride and anything salty I could get my hands on! We drove up the Horsethief switchbacks and waited at the top for the last guy in our group to pedal up. I was feeling a bit better and no longer happy with the idea of just ridding in the truck. The last stretch was supposed to be a hard clay dirt road with only a gradual elevation gain...

I found myself stepping out of the truck, putting my helmet back on, and unloading my bike. I started up the dirt road with a new surge of energy. Yup, that lasted about 3 miles then the fatigue started back in. I caught up to another guy in the group and rode with him for a couple miles before the leg cramps started again. I couldn't keep up with his pace anymore and fell back to riding alone. The support truck passed again and asked if I wanted to get in. I thought it was only a couple more miles so I told them no. The leg cramps got worse so I got off and started walking, my legs weren't cramping up while walking. Rise after rise the road kept going. Eventually the support truck came back because they realized I had farther to go than I thought. I gratefully accepted a ride...again. I logged a total of 95 miles over some 13 hours. I finally got my chance to ride the White Rim trail and it kicked my butt! That three day option sounds really nice...

Lungs

Lung problems often come along with MCTD, often enough that I was supposed to have had a pulmonary function test done years ago. I've yet to get one mostly because I haven't wanted to know. I feel okay lung wise and that's been good enough for me. To feel okay, but then get a test result saying things aren't as okay as I think they are is an idea that kinda scares me. Sure there are times where I develop a cough for a few days after a difficult physical effort, but it doesn't really bothered me too much. Just one of the several weird things my body does?

This year I'm stepping things up again for cycling events. I'm going to do the Crusher again and I'm adding the Iron Horse Classic and Park City Point 2 Point to the list. All involve lots of climbing at high elevation. You know, nice lung burners!

The past couple weeks I've been browsing the web again for excerpts of books and research papers with info about MCTD. The information about lungs has been sticking out this time around, probably because of my upcoming summer of pedaling up hills. From what I've gathered there's up to an 80% chance I have or will develop one of the following: pulmonary hypertension, pulmonary fibrosis, or interstitial lung disease. It doesn't look like there's anything that can be done to prevent or cure them, only slow them down. I guess I should finally get the test done...one of these days.

I plan to keep riding my bikes and signing up for ridiculous events as long as I can. One benefit to the prospect of losing lung capacity? My bike rides have become that much sweeter knowing its an activity that could end sooner than I'd care for. Lungs, using them before I end up losing them!

...maybe it's time to start learning how to ride a motorcycle as well, just in case...

West-N-Back

Friday night we met up at the bike shop in Victor, ID for a meeting about the next days ride. Jay Petervary, ultra endurance cycling legend and multiple time Iditabike finisher was in charge of the ride. His wife Tracy was also there along with a group of around 14 other people. I first learned about Jay and Tracy when I started following the Tour Divide in 2009. That year they were the first to do the 2700 mile dirt road race while riding a tandem! It was cool to meet them in person.

I didn't sleep very well the night before and woke up with a headache and feeling a bit nauseous. I ate some oatmeal for breakfast and within a few minutes the nausea was much worse. As we were heading out the door I felt an urgent need to visit the bathroom and soon found myself kneeling at the toilet losing my breakfast. I could tell it wasn't a bug, probably more to do with the general lack of sleep the past week and not getting enough to eat the day before. We got in the car and headed out toward the trailhead.

Mother Nature didn't cooperate with the ride plans for West-N-Back and considering how I physically felt, I wasn't too bothered by that. We arrived at the designated starting point around 7:30 am and the parking lot had around a foot of new snow. Fat bikes float pretty well, but they do have their limitations and 12 inches of new snow is too deep to pedal through. We drove up the road to Ponds to work on a plan B. We decided to go up a nearby road and check out the trails that branched off of it. If there was something that looked groomed more recently we'd take it, if not we'd just ride the snow covered road.

We ended up just riding the road, but it was a beautiful road with excellent conditions for snow biking. There were houses now and then, but for the most part just trees for scenery. Beautiful snow covered trees. There was a steady falling of snow all day and it was a pretty wet snow. We were thoroughly soaked by the time we finished. We covered almost exactly 30 miles and it took Brett and I 4 hours to do it. That's the longest I've been on a fatbike and it certainly is a lot of work, but it was pretty fun. We met up with everyone else back at Ponds and got some pizza at the bar there. We then sat around for at least an hour if not more just eating, laughing about how things turned out, and generally talking and joking around. It was a small group, about 10, with some very accomplished riders and it was pretty awesome. They were incredibly friendly and welcomed us novice strangers with open arms.

It wasn't at all what I was expecting out of the trip. But in a lot of ways it was better. Some of the best moments in life seem to come about when your original plans fall apart. Plan B can be a beautiful thing.

Taking Back Control

It was eight years ago on a trip to Idaho that my MCTD symptoms began to manifest themselves in full. That weekend marked the beginning of a change in the way I lived my life. Its a scary thing to go from being a fully able bodied person to someone who can't close their hand into a fist, hardly hold a pencil and write, or get up off the floor. I feel like I've always been a fearful person and a sudden chronic illness certainly doesn't inspire confidence for the future.

Next weekend there is a snowbike ride in Idaho, West-N-Back. The ride begins near Island Park, ID and follows snowmobile trails to West Yellowstone, MT then turns around and heads back. I'm going to do the West part, not the back...this year... Its just a small group of people on a friendly ride, but as I seriously contemplated attempting it and then committed to ride the 'West' part my attitude toward the ride began to change a bit. Dealing with chronic soreness, pain, fatigue and all the other goodies that come with MCTD or other chronic illnesses is not easy. The struggle is something that has occupied a lot of my thoughts and time over the past eight years. In the last few months some things have finally started coming together for me and my coping skills have improved pretty dramatically. I have a renewed confidence that although I don't know what the future holds for me, there are potentially some pretty bad things that could go wrong with my body, I'll be able to deal with it. This past year I've learned a lot about embracing pain and fatigue and working through it instead of trying to avoid or fight it. To my surprise I've found that I'm pretty damn good at it. It also opens the door to some great experiences. With this newly discovered ability and with the timing of the snow bike ride so close to my anniversary I've decided to turn this into something personal. I'm going back to Idaho. I'm going to enter an event that is pretty much guaranteed to be difficult and tiring. I'm going to embrace the struggle and fatigue. I'm going to enjoy the moment and the beautiful surroundings. A trip to Idaho is again going to mark the beginning of a change in the way I live my life.