Today I will eat Moby Dick

I have decided to post something a little different today.  I have a dear friend who has been with me on this journey from the beginning.  He owns a company here in the White Mountains called Alpha Oxy Med.  Each year, he has a weight loss competition.  It is a motivating force for many people to change their lives.  I have included a link to his blog below.  Check out his blog.  He writes some great stuff.  His latest post was the following:


Why?
Just saw this:
According to a recent study, 42% of Americans are doomed to become obese by 2030
I would love to hear your views as to why we, as a country are becoming fatter.
Email me, comment, let's hear it.


Alpha Oxy Med Blog and Weight Loss Competition

I used to have the web address of this blog shamelesscyclist.blogspot.com.  I chose that name because shame has been such a big part of my life for many years.  I recently changed the address as this blog has grown.  I have always wanted to post some thoughts on shame and fear.  This was the perfect opportunity.  The following is my response:


My Dear Friend Pedaldork, 

I've got a little to say on your post regarding why Americans are fat?  Ok, I have a lot to say.

I remember during the presidential debates in 2004 when George Bush was debating John Kerry, the moderator posed a question that went something like this:  What is more harmful to Americans, CO2 emissions from fossil fuels or high fructose corn syrup?

I thought to myself, ok Mr. President or Mr. Kerry, here's your chance to knock this one out of the park.  Here's your chance to wake up America and give a remark that will go down in the ages and be remembered for generations.  Here's your chance to have a Ronald Reagan moment when he responded to a question with the question: "Are you better off now than you were four years ago."

Well, neither men gave a good answer and as expected, Mr, Kerry went off on his hypocritical environmental views (as he's flown around on private jets).  Mr. President gave an answer that's not worthy of doing a Google search for.

The bottom line:  American are fat because of the quality and quantity of food we eat.  There is a deeper question that needs to be asked here:  Why do we eat so much and so poorly?

I believe the answer to this question is food can be our Moby Dick.   Let me explain.  We use food as a coping mechanism.  We use food to hide deeper problems.  We use food to comfort us.  We use food to run from our fear and shame.   Let me expound on this metaphor.

Moby Dick has become one of my traveling partners through this journey we call life.  For those of you not familiar with this great American novel, let me give a brief outline.

The book is narrated by Ishmael who decides to go on a whaling expedition.   "Call me Ishmael" is the famous opening line as Ishmael introduces himself to the reader.  Ishmael then gives the reasons he has decided to go on this voyage.  I believe Ishmael is despondent and wants to deal with the underlying reasons for his depression which I believe some are shame and fear.

The voyage turns out to be Ahab's (the captain of the ship) personal vendetta to find and kill Moby Dick, a large sperm whale.  On a previous whaling expedition, Moby Dick permanently disfigured Ahab and bit off his leg.  Ahab is a controversial character who is  "grand, ungodly, god-like," egocentric, persuasive, motivated, and full of fear and shame.   Captain Ahab's monomaniacal pursuit of Moby Dick eventually becomes the goal of the entire crew.   (Lance Armstong's monomaniacal pursuit of the Tour de France is a classic modern day example of Captian Ahab).

 The Great White Whale can represent many things to many people.  If you read my blog, you know I have compared Moby Dick to many things.  For this response, to my good friend Pedaldork's question, Moby Dick represents our shame and our fears.  Shame is toxic.  Shame is powerful.  Shame is painful.  Shame tells us we are unlovable and worthless.

Shame is an acquired emotion as we learn the expectations imposed upon us by others.  Shame is magnified as we develop expectations of ourselves.  When these expectations are not met, the emotion of shame is felt.

Shame pops its ugly head up in many different forms many times during the day.  Most of the time, shame is unrecognizable and is just below the level of consciousness.  When the expectations are not met, the powerful emotion is felt.  You feel worthless and unlovable.  You feel like...crap.  No one likes to feel this way, so you develop coping mechanisms in order to avoid the pain.  One of the ways people deal with this toxic emotion is by changing the way that you feel.  This can be done by a variety of ways, and eating is one of the most common toxic ways.

The reason eating changes the way you feel has to with the brain's reward system.  Activities like eating, drinking, and sex are examples of rewarding activities.  When these activities happen, they cause a neurotransmitter to be released in the brain called dopamine.  Dopamine is called the pleasure neurotransmitter.

When someone eats for comfort, the brain is flooded with this neurotransmitter and the feeling of comfort, well being, or euphoria is experienced.   Drugs, alcohol, gambling, and other addictions are other ways dopamine is released.  When someone takes methamphetamines, heroine, or prescription drugs the brain is flooded with dopamine just like it is when sex or eating occurs.  Think about this the next time you see someone who is obese.  Think about this the next time you see the alcoholic, drug addict, or sex addict.  Hopefully, you will have a little more compassion and understanding.  It's deeper than saying, just quit.

The challenge for us all is to deal with your shame and fear in healthy ways.  Don't be like Captain Ahab or Lance Armstrong (I admire Lance Armstrong for finally dealing with this toxic emotion).  Deal with your shame and fear.  Don't run from it.

Recently, Moby Dick has taken on a literal physical representation.  A sandwich.  There is a new Bakery in Show Low, AZ called the Sunshine Bakery & Deli.  This bakery has the slogan: "All natural.  All from scratch."  My wife showed me the menu this morning, and on the menu is Moby Dick.  I couldn't believe it.  I knew this must be a classy bakery and deli.  Albacore Tuna, carrots, celery, onions, pickles, mayo, lettuce, tomato, and sprouts.  I'll take that on the 9 grain bread.

Today I will deal with my fear and shame in healthy ways.  Today, I will not be like Jonah and get swallowed by a whale as I run from my fear and shame.      Today, I will swallow the whale.  Today, I will eat Moby Dick.

Moby Dick has been spotted...the chase is on!

Overlooking the Atlantic Ocean at Martha's Vineyard Spring 2000

One night at mid-watch, after several months of sailing in the Pacific, Atlantic, and Indian Oceans searching for the Great White Whale called Moby Dick, Captain Ahab was on the deck of the Pequod and catches the scent of a whale.  At dawn, Ahab notices an impressive wake of a large whale and states:  "There she blows!--there she blows!  A hump like a snow-hill!  It is Moby Dick!"  This began a three day chase which...you have to read the end of the blog to find out what happens in the novel.

After several months of searching the vast genetic oceans filled with DNA, Moby Dick has been spotted on chromosome 15...the chase is on!  We have found the gene that is causing Mitochondrial Disease in our family.  (See Spencer Update--Hope for previous mentions of this search for the gene/Moby Dick)

Nightwatch
Nauset Lighthouse, Cape Cod  2000

This search and find was no easy task.  I feel fortunate that we have some of the most brilliant scientists and doctors working for us.  To give you an idea of just how difficult this search was, I will give a little genetics tutorial.  There are approximately 20,000 genes in the human genome.  These are called nuclear genes and are located on chromosomes.  Chromosomes are long strands of a molecule called DNA (deoxyribonucleic acid). 

Humans get 23 chromosomes from our mom and 23 chromosomes from our dad.  The chromosomes are found in the nucleus of our cells and thus called nuclear genes/chromosomes/DNA.  It is estimated that 1,500 of the nuclear genes are solely dedicated to the mitochondria.  That is 7.5% of all the genes in our bodies are dedicated solely to making proteins in the mitochondria.  This should give an idea of how important this organelle is to our bodies.  It does more than just produce energy.

There is also something called mitochondrial DNA that we only get from our mothers. This mitochondrial DNA (or genes) is completely separate from the nuclear DNA (or genes) and  contains 37 genes.  A genetic defect in either the nuclear genes or the mitochondrial genes can cause Mitochondrial Disease.

Spencer and Sydney 2004
 Science Museum 
London, England 
Original DNA model 
discovered by
James Watson and Francis Crick

James Watson and Francis Crick
Discovered the molecular structure
of DNA (deoxyribonucleic acid) in 1953
Francis Crick declared: "We have 
discovered the secret of life".

As I have mentioned, we have two whaling boats searching for the gene(s).  TGen with Dr. Narayanan as one captain located in Phoenix, AZ and Medical Neurogenetics with Dr. Shoffner as the other captain in Atlanta, GA.

I spoke with Dr. Narayanan by phone this week and he informed me that he and other scientist at TGen had found the gene that is causing Mitochondrial Disease in our family.  The gene is called MTFMT which encodes mitochondrial methionyl-tRNA formyltransferase, which is required for the initiation of translation in mitochondria (http://www.omim.org/entry/611766).  Many thanks to TGen and Dr. Narayanan for this incredible breakthrough!!!  We now know exactly what is going on at the cellular level.  This is so vitally important for finding treatments that will ultimately allow us to modify the phenotype--essentially making the symptoms less severe.

It seems that whenever I get either good or bad news from our doctors, I am at work.  My emotions are not easily hidden (I inherited this from my mother).  After I hung up the phone with Dr. Narayanan, tears of joy welled up in my eyes.  How many times have I spoken with our doctors only to hear more devastating news.  How many times have my eyes welled up with tears of sadness over the past few years.  Not on this day!  Tears of joy, thankfulness, and hope filled my eyes.  I paused to call my wife and share the wonderful news.

A coworker asked if I was ok.  I replied, "allergies...it must be those juniper trees again...wait, those trees pollinate in the spring...does someone have one of those therapy dogs or cats in the waiting room?"  I showed my office staff the TGen article about our family and stated this remarkable company has found the gene.

We have a very busy practice and I see a lot of patients every day.  I'm sure many people have thought, through the years, "That PA has pink eye.  I hope he doesn't shake my hand.  Oh no!, he just touched my neck searching for lymphadenopathy with those hands that must have pink eye germs all over them.  I'm headed home to shower."

When we saw Dr. Narayanan this past fall, he reported he and TGen had analyzed all the genomes of our family, and there was no sighting of Moby Dick, but they were going back again to look a second time with newer technology.

Interestingly, Dr. Shoffner said the same thing when we saw him in August.  I got a call from Dr. Shoffner's office several weeks ago who stated that our insurance company, had denied his request to look at more genes.  I thought, "How in the hell can they do this?"  I called them and argued with them.  I said, your criteria for genetic testing for Leigh's Syndrome states: any neurological decompensation or bilateral basal ganglia lesions in the brain.  Seth meets this criteria so what grounds do you have to deny this test?  The test got approved.

Also, our insurance company denied our claim with Spencer and said we were responsible for about a $20K bill.  They stated there was not enough evidence to warrant testing on Spencer.  This poor customer service rep did not realize who she was speaking with.  She did not realize that Mitochondrial Disease has consumed my life for over 3 years.  She did not realize I have become like the whale harpooner Queequeg in the novel Moby Dick to my children and to others fighting Mitochondrial Disease.  She did not realize that I have a medical background and have sifted through all the data on all my kids.  

With the realization that the idiom, 'You can catch more flies with honey than with vinegar," is true,  I kept the tone at bay.  Realizing this was over her head and that the evidence for doing the tests was overwhelming, she tried to pass me off to the doctor who reviewed the data and denied the insurance claim.  After being on hold for 10 minutes, she came back on the phone and said, "He was not available."  I thought to myself, "Coward!"  She then said, "You can appeal this denial." 

In closing this post, I will write more about Moby Dick.  Those who have followed this blog know that I love this book written by Herman Melville.  Brad, a dear friend of mine, taught me much about life through the eyes of Moby Dick.  So, as I have journeyed through life over the past few years, I have included Moby Dick as one of my traveling partners.    

The book is narrated by Ishmael who decides to go on a whaling expedition.   "Call me Ishmael" is the famous opening line as Ishmael introduces himself to the reader and says he has decided to go on this voyage because he essentially is depressed:  "...whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me..."

The voyage turns out to be Ahab's (the captain of the ship) personal vendetta to find and kill Moby Dick, a large sperm whale.  On a previous whaling expedition, Moby Dick permanently disfigured Ahab and bit off his leg.  He has a prosthesis that is made from a sperm whale's jaw bone.   Ahab is a controversial character who is  "grand, ungodly, god-like," egocentric, persuasive, motivated, and full of fear and shame.   Captain Ahab's monomaniacal pursuit of Moby Dick eventually becomes the goal of the entire crew. 

The Great White sperm whale is powerful and unlike any other whale anyone has encountered.  Moby Dick manipulates his encounters with mankind in a manner beyond the capacity of a normal whale.  But no one really knows the true nature of this sperm whale and it is up to the reader to decide.  Is Moby Dick a representation of deity, Ahab's obsession, Ahab's shame?  Is Moby Dick a freak of nature due to several point mutations in his genotype, a force of evil, or is he just a large, intelligent mammal that would leave men alone if they would stop bothering him? 

Captain Ahab sees Moby Dick as a facade, a  mask for some force of evil.  He sees Moby Dick as the Dark Side of the Force.  Ahab resents Moby Dick because of what the whale did to him in the past.  Ahab becomes so focused on destroying this whale that it becomes his sole purpose for his life.  

I have come to see Moby Dick in a variety of ways depending on my situation.  Today, Moby Dick represents Mitochondrial Disease.  Ahab's passion to conquer the whale represents the faces thousands of children and adults who suffer from this disease with no cure and no effective treatments.

Ahab, is the hero this time.  Ahab, knowing he was going up against a force that was more powerful than he had the capacity to deal with, continued to fight despite the odds.  He was focused on this mission and did not let distractions get in his way.  On day 3 of the chase, the remaining crew continued to pursue the whale.  When the whale is spotted again, some of Ahab's final words are, "Aye, he's chasing me now; not I him--that's bad."  Ahab did not turn and run.  He continued the fight all the way to his death.

  

Ahab's fight represents Seth, Spencer, Sydney,  Ellie, Desmond, Andy, Sebastian, Mae, Lawson, and many others who "[have] this disease, but [don't] let the disease have them."  It represents  Mylee, Ryder, Zach, and  Shannon (three young children and a mother) and many others who passed away last year who "had this disease, but didn't let the disease have them."  You are my heros!  You give me the courage to continue this fight!  Mitochondrial disease which appears at times as inscrutable as Moby Dick has become my metaphorical Moby Dick.  

Our family has been given a gift this week by TGen which we are so warmly and deeply appreciative of.  A remarkable gift that allows us to take the fight of Mitochondrial Disease to another level.  Other gifts have been that so many of you have helped us along this journey. You know who you are.  Whether your gifts have been silent prayers, sharing our blog with others, notes of encouragement, or donating to our cause, we are so warmly and deeply appreciative.

Below are photos taken of both the Atlantic and Pacific Oceans.

View of the Atlantic Ocean from Martha's Vineyard Spring 2000

 

Pacific Ocean 2002

 

Coast of Maine 2001

Nauset Lighthouse, Cape Cod Spring 2000

View of Atlantic Ocean at Bar Harbor Maine, May 2001

Gay Head Lighthouse, Martha's Vineyard Spring 2000

Gay Head Lighthouse on Martha's Vineyard Spring 2000