Monday, July 22, 2013

Farewell Friends & Shipmates: The Pequod is Changing Course

When Abraham Lincoln left Springfield, Illinois in 1861 to start his journey for Washington, D.C. and the presidency, he paid an unforgettable and emotional tribute to his friends and neighbors in what is known today as the Lincoln's Farewell Address. 

As Lincoln boarded this special presidential train, he recognized most of the people in the huge crowd gathered outside the train depot. Ahead of him awaited unimaginable and arduous trials.  Trials in all aspects of his life--family, marriage  professional, political, and the all important task to save the union.  Behind him would be many people who helped shape his character and taught him many principles that guided his life and allowed him to be so successful.

The crew of the Pequod in front of a statue
of a great man
"My friends -- No one, not in my situation, can appreciate my feeling of sadness at this parting. To this place, and the kindness of these people, I owe every thing. Here I have lived a quarter of a century, and have passed from a young to an old man. Here my children have been born, and one is buried. I now leave, not knowing when, or whether ever, I may return, with a task before me greater than that which rested upon Washington. Without the assistance of the Divine Being who ever attended him, I cannot succeed. With that assistance I cannot fail. Trusting in Him who can go with me, and remain with you and be every where for good, let us confidently hope that all will yet be well. To His care commending you, as I hope in your prayers you will commend me, I bid you an affectionate farewell."

Becky and I made the decision a few months ago to resign from my job of 10 years and pursue other career options.  It was a difficult decision to make.  

On the steps of the Lincoln Memorial with my 
co-captain of the Pequod.  The Washington
 Monument in the background
Since January of 2003, I have worked for Blue Ridge Regional Clinic.  In many ways, this has been the ideal job for me.  I work hard and have a lot of time off to play.  This lifestyle has suited me well for a long time.  When the unexpected and uninvited guest called mitochondrial disease (that I often call Moby Dick) came into our lives in 2008, things have never been the same.  This disease has completely transformed our lives and has given us a new perspective on life.

Honestly, the decision to resign was unexpected, but a necessary change as we continue to search for Moby Dick.  Ahead of me and my family is the persistent war on mitochondrial disease.  Each morning when our children awaken, we give them a handful of medications and supplements.  We have no idea if these medications and supplements (often called a mito cocktail) provide any benefit.  These are extremely expensive!  This serves as an omnipresent pervading reminder that my children have a chronic disease with no cure and no effective treatment.  I would like to change that!

I have often spoken of our journey as being on a ship in the open waters of the ocean in uncharted waters.  I use analogies from the book Moby Dick, in my writing.  Moby Dick is a Great White Whale and Captain Ahab and his crew are on an expedition to find and kill this whale.  

The ship the crew are sailing on is a three-masted whaling ship called the Pequod.  I have used the story of Moby Dick and the Pequod to help describe our family's odyssey  in the unchartered waters of mitochondrial disease (see YouTube video).  Over the past several months, I have climbed the masts looking for the best course.
Our symbolic Pequod.  Seth made this boat with his
pre-school teachers shortly after he was diagnosed
 with mitochondrial disease.  This picture hangs on
the wall in his room.
The sails have been set in a completely different direction.  I plan to use my talents and professional abilities to help fight this war on mitochondrial disease.  

Where this will ultimately be, I don't know.  As we make our way to our final destination, I will continue my work at Pineview Hospital and do some part time work in the Emergency Department at Summit Regional Medical Center.

There will be no huge crowds waiting to hear a speech as I depart, but in my mind, there is an audience of people and experiences over the past 10 years that have helped shape my life that I will be leaving behind.

Some in the audience are my co-workers and colleagues that I have worked with over the past ten years.  I love these good people!  I've spent countless hours with them.  We have experienced death, life, marriage, divorce, love, disease, joy, sorrow, and hope together.

Photo taken on 2-28-13, International Rare Disease Day.  
My coworkers all wearing ribbons in honor of my 3 children
 who suffer from rare mitochondrial diseases with no cure
 and no effective treatments.  Missing from photo are Dale,
 Shawnna, and Dr Paxman

I would be ungrateful if I did not pay tribute to these co-workers and colleagues that I can honestly call my shipmates and friends. 

These shipmates have been with me as we were hit with Seth's diagnosis, his progression of disease, his uncertainty, and now his thriving.  These shipmates have been with me as we were hit with Sydney's diagnosis.  These shipmates have been with me when Spencer was diagnosed in what could be called a category 5 hurricane that did severe damage to our ship and almost caused our ship to sink.  I will never forget the love and support that I have felt from them all.

On the steps of the Lincoln Memorial viewing the
Washington Monument
I would be ungrateful if I also did not thank my patients who put their trust in me to take care of them and their families.  I have been deeply touched by your kind goodbye/thank you notes and thoughtful words as we've said goodbye.  I have been moved by your generous donations towards mitochondrial disease research in honor of our children to The Belnap Children Mito Fund and to Team Belnap: we swim, bike, and run because they can't.

Family photo before mitochondrial disease entered our world

Spring 2013
One final thought before I end this post.  Unity and strength is the word that best describes these pictures taken by Paxman Photography.  This disease has caused our family to bond and as a result, we have become stronger.  As we continue sailing on this journey in search of a cure for mitochondrial disease, we are unified and strengthened by so many of you.  As our family looks to the horizon, uncertainty and fear are omnipresent in the way of storms, mechanical problems with our boat, illness of another shipmate, etc, etc, etc, but we have hope and will move forward with courage.

Saying goodbye is never easy for me (I think I have separation anxiety). friends, colleagues, co-workers, and patients who I can call shipmates, I say thank you and bid you an affectionate farewell until we meet again on this journey called life.

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