Tuesday, September 11, 2012

"...The locals call this section of the trail Heaven on Earth."

"Heaven on Earth"  South Boundary Trail 164

Last week, I took the week off for some much needed personal and professional CME (continuing medical education).  As a part of the personal CME, I went mountain biking.  I like to think I am a connoisseur of mountain biking trails and will go to great lengths to find and ride great trails.  South Boundary (Trail 164) in Taos was rated the number one mountain bike trail in New Mexico by several sources.  Taos, NM--here I come.

I stopped by a local bike shop (another one of my favorite things to do) called Gear Up in Taos.   This was a first class bike shop!  Friendly, helpful courteous, kind, cheerful...They must have been Boy Scouts in their earlier days.  One of the owners spent several minutes explaining this trail, gave directions, a map, and then said something that stuck in my mind:  "This section of the trail is beautiful.  The locals call this section of the trail Heaven on Earth."

The trail was 22 miles long and I needed someone to shuttle me to the top to get the full 22 miles.  Rey (one of the owners) recommended just riding the section "Heaven on Earth".  It was too late in the day to ride, so I planned for an early morning start.  I texted Becky, told her my plans.  She texted back: "Be safe and smart".  I had told her how excited I was to ride this trail.  She knows of my passion to find and ride new trails. 

The section "Heaven on Earth" was about a 6 mile climb to elevation around 10,600 feet.  I put on some Pink Floyd and started to ride.  It must have been in the low 50s high 40s.  Thankfully, I brought some cold weather gear.  As I was climbing, many thoughts flew through my mind.

"Heaven on Earth"  what a description.  This is not a description that you casually call something.  I was wondering if "the locals" call this place "Heaven on Earth" because of its beauty, because of the altitude, or because of the state of mind that it places you in.

For me, Heaven is a place, but also a state of mind.  A state of mind that is pure happiness.  I began to realize how infrequent I have felt this state of mind over the past several months.  As I examined my life over the past several months, I began to realize that I have had moments of "heaven on earth".   Seth's 6th birthday--a day we never thought we'd see.  The day (about 1 year ago) Dr. Berges pulled me back into the MRI reading room to look at Seth's brain MRI which showed significant improvement; having Becky in my life who is...well, newel post is a good literal and metaphorical description of her;  listening to Spencer speak in Church about Mountains to Climb;  listening to Piano recitals and choir concerts; the list could go on and on.   I also realized my tendency to look at the Hell on Earth more than Heaven on Earth.

As I approached the summit, I began to become fatigued.  My legs felt weak and were burning.  My chest felt like it was about to explode.  My mind was fatigued and I was loosing motivation to continue my ride.   It was during this time, I had an epiphany!

I was reminded of the first time Sydney experienced exercise intolerance.  It was on a hike in Utah to Stewart Falls during the Summer of 2010.  I was with Becky, my other kids, and my brother Kevin and his family.  Seth's diagnosis of Mitochondrial Disease was highly suspicious, but not confirmed.  She literally could not keep up with us.  I checked her heart rate and it was 170.  I knew at that point that something was wrong with Sydney (see post Our Journey to the Diagnosis for details).

Exercise intolerance, severe fatigue, muscle pain has happened to Sydney many times since then.  This past Summer we were walking a mile in one of the Giant Sequoia Groves in Yosemite National Park with her heart rate at 170, respirations 34, flushed skin, and severe fatigue.

I remembered last spring when she walked from school to my office which is less than a mile away in 75 degree weather.  She didn't make it to my office.  She was resting on the side of the road, overheated, flushed, dehydrated, breathing fast, muscles cramping, and severe fatigue.  As I picked her up in my Jeep, she said to me: "daddy, I couldn't walk any further.  My legs are hurting so bad and I am so thirsty".  My heart ached for her.

I was reminded of Seth and the how Dr. Narayanan had stated he had never seen lactic acid levels so high in someone's central nervous system.

I was reminded of Spencer and how shocking his diagnosis was and still is.  I recall Dr. Shoffner stating how high Spencer's lactic acid levels were and there really wasn't any other explanation other than mitochondrial disease.  I remembered how at the age of 6, he would beg to go mountain biking with me (I am so thankful I went with him). I remember one of our first mountain bike rides which was at Los Burros in the White Mountains.  A pang went through me to thinking the future is uncertain with all of my children.  

As I reminisced, which I frequently do when I ride, I looked down at my Garmin, my heart rate was 180.  My respiratory rate was very high and labored.  I was exhausted!  As exercise physiologists would say, I was at my lactate threshold.  My body could not get rid the of lactic acid any faster.

As I thought of my children and the lactic acid inside their bodies, I was motivated to continue on, in fact, I pushed harder until I became so nauseas, that I had to stop.  10, 600 feet.  Heaven on Earth?  Absolutely!

I rested for a few minutes, thought of my children who experience the dysfunction of their mitochondria every day.   I jumped back on my mountain bike determined to push my cellular energetics to their absolute limits.  I wanted to experience what my children experience on a daily basis.  

Now for some biochemistry.  My metabolic demand was so high that I could not keep up with the demand for oxygen.   Lactic acid  was accumulating at high levels in my blood which was causing my increased respiratory rate, changes in my cardiovascular system and in the end, I was experiencing fatigue.  My body could not get rid of the lactic acid fast enough so I became fatigued and had to slow down.  This is the normal process of cellular energetics which occurs inside the mitochondria in our cells.

Oxygen is needed by the body in the final step in our bodies long and complicated process of converting the food we eat to a usable energy source.  My lungs were soaking in every available oxygen molecule that was available--like a dry sponge soaking up water.  The problem was I was pushing so hard, that I couldn't get enough oxygen to my cells fast enough.  Because of this, my body was using both aerobic and anaerobic metabolism.

As I thought about my normal cellular energetics that were taking place in my mitochondria and the response that all of us have felt when we push ourselves physically to our maximum capabilities, I also thought of abnormal cellular energetics that were taking place inside Sydney, Seth, and Spencer.  I also thought of the thousands of other children and adults who have dysfunction with their cellular energetics inside their mitochondria.

My mind was so utterly consumed with this epiphany and how beautiful it was that I was relating with my children at some level that I forgot Becky's words from her text:  "Be safe and smart".

A large, wet Pinon Pine root came out of nowhere and was right in front of me.  Usually, a bunny hop is all it takes to avoid these dangers.  My mind was occupied with lactic acid and mitochondrial dysfunction that I couldn't do anything except...crash.  My front tire hit that root and I slid sideways until my back tire hit the root.  A forced rectal examination from a bike seat was the last thing I remember as I was catapulted over the handlebars onto the wet forest floor.  How stupid and unsafe I was riding.  At this point, I was alone and several miles away from help.   I laid there for several minutes recovering and wiping the blood and dirt off my legs.

Wet roots are to mt. bikes what wet cattle guards are to road  bikes--dangerous

I jumped back on the bike and finished the ride.  "Heaven on Earth?"  I agree with the "locals" in Taos, NM.  This trail was stunningly beautiful single track!  It also allowed me to relate in a way I never have before with my children and those who have Mitochondrial Disease.  

Then next time you are exercising at your max, remember Seth, Sydney, and Spencer.   Remember their dysfunctional mitochondrial.  Remember how underfunded this disease is yet how linked it it to so many other diseases.


  1. Great read Newell. This is Ryder's dad and I love riding my mountain bike. I love riding with my boys, something I dreamed about even before they were born, but I also love riding alone for the meditative zen you can achieve when you push yourself so hard surrounded the epic beauty of creation. Riding singletrack is how I pray.

    1. Thanks Les. I've read some of your posts on your website. Would love to hook up and ride some single track.

  2. Wow. I am getting a glimpse of what you are trying to describe with your children. I never really understood fully, but I can relate the feeling from running. Insightful and inspiring...

    1. Thanks Annette. That is why I want to do the video about this post. Almost everyone can relate if you frame it like this. Hope you will be able to run with Becky in the video.

  3. Being athletic it is hard to understand how anybody could have trouble walking less than a mile and make me seem very insensitive...well, it is insensitive. When you lay it out this way it makes it easier to understand. I will for sure think of Seth, Sydney and Spencer when I run and push hard...it will help me to push even harder. and Nate and I are totally in for the video!!!

    1. Thanks Heidi. Becky and I have had the motto "I run (or ride) because they can't".