Leadership Lessons from the Short Life of Chuck

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My sister was four years old and I was two in 1960 when our brother Chuck was born.  As a result of a viral infection at the age of three months, Chuck developed encephalitis resulting in permanent brain damage.  He regularly endured Grand Mal seizures and remained at the developmental level of a one-week old.  Professionals encouraged my parents to institutionalize Chuck and indicated no treatment was available until and unless he lived beyond the age of five.  Not much hope was given that treatment would be necessary.

When Chuck did survive to the age of five a process of securing treatment began.  The most promising procedure was available at The Institute for the Achievement of Human Potential in San Antonio, Texas.  There was, however, a ten-year waiting list for acceptance to the program.  Amazingly, Chuck was accepted after three months.  Part of the treatment required a 750-mile trip every two months for a year.  Since my parents’ automobile was not very reliable a local dealership loaned them a new vehicle to use for each trip and a service station in our community provided free gas.

The suggested treatment for this type of brain damage was a patterning therapy.  The therapy included a series of exercises performed several times each day by several people who manipulated Chuck’s head and limbs in patterns purporting to simulate the movements of a non-impaired child.  The patterning therapy required building a long slide, a patterning table, and a crawling box.  As soon as my parents arrived home from the initial medical consultation a friend from church secured the specifications for building the patterning equipment and completed those items at no cost to my family.

The therapy required five people for the patterning sessions.  Each session began with thirty minutes of patterning followed by a five-minute break and concluded with thirty more minutes of patterning.  This process was completed three times a day, seven days a week for an entire year.  Church and community friends and even complete strangers responded to a local newspaper advertisement for volunteers.  The list grew to 125 committed respondents.

My sister and I were even able to participate by standing on a chair to help move Chuck’s legs.  A fifteen-year-old boy volunteered and since he was not old enough to drive also enlisted his dad to help.  As a functioning alcoholic, one volunteer walked from the other side of town, never missing her volunteer slot and always arriving completely sober.  During that year, a man who worked for the drug company that manufactured the expensive medication required to minimize Chuck’s seizures just happened to move into the vacant home next door.  With his assistance, the drug company for which he worked provided free cases of the medication.

The coordination of the volunteer schedule was a tremendous task.  A woman my parents did not know offered her time as telephone coordinator and served as the contact person for patterning substitutes. My parents never had to worry if enough volunteers would be present to help.  Seven years earlier this gracious lady had contracted polio and because of that disability was abandoned by her husband.  Although confined to a wheel chair and almost completely paralyzed except for her left arm, she valiantly coordinated the 125 volunteers.

The daily patterning therapy continued for a period of a year.  And although Chuck’s developmental level had increased from a one-week old to a six-month old the physicians determined that no further development would be realized and the patterning therapy was discontinued.

The next step for treatment was to see a group of specialists in Philadelphia.  The expense to fly my parents and Chuck to Philadelphia was great so our community began a united effort referred to as Operation Chuck to help raise the necessary funds. Ladies clubs organized teas, girl scouts held bake sales, and a community garage sale was scheduled.  Complete strangers dropped money by our home to contribute to the fund.  And in just a few weeks all of the needed travel funds were raised.  The disappointing result of the trip, however, was that the specialists in Philadelphia encouraged my parents to discontinue medical treatments after determining nothing further could be done.  Chuck lived less than a year after they returned home from Philadelphia and at the age of seven died of complications from pneumonia.

The question might be asked, “How can this be an example of successful leadership when the ultimate goal was never achieved?”  Let me share a few of the leadership and teamwork lessons I learned and continue to learn even though it occurred over forty years ago:

  • Always seek the counsel of professionals but ultimately proceed in response to convictions.
  • Not now does not mean not ever.  Waiting requires patience without wavering in conviction.
  • The success of a team is not just measured by the end result; it is also measured by incremental successes along the way.  Celebrate the in-betweens of the process.
  • Not all teams are created; they often evolve in response to a need.
  • The transformation that occurs in the lives of team members can be as important as achieving the ultimate goal of the team.
  • Great teams consist of those who are willing, though they may seem unlikely.
  • The success of a team is rarely measured by individual accomplishments.
  • When the stakes are high, teams must consider resources and influencers from outside of the organization.
  • Team success may not depend on a single defined leader as much as the collaboration of numerous ad hoc leaders who subordinate individual interests to the concerns of the team.
  • A unified mission can transform individuals, families, churches, and communities to realize success beyond control or comprehension.
  • Successful teams leave legacies.  My sister and I observed the sacrificial giving of an entire community of close friends as well as complete strangers.  And with unwavering faith our parents sacrificed all they had for the sake of our brother without sacrificing the physical, emotional, and spiritual needs of our entire family.  That legacy has lasted forty-five years.
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One Response to this post.

  1. Posted by Jim Wood on 03.02.13 at 3:03 pm

    Great inspirational story! The summary of lessons learned is insightful and instructive. Thanks so much for sharing.

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