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  Friday, March 27, 2015
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Barry Siegel - Profiles in Courage
By Rick Winterson

That well known title is of course borrowed from John F. Kennedy’s book of the same name.  But it seems to fit Barry Siegel and his wife, Jane, better than any other expression.

     Barry Siegel is quadriplegic.  He lives with his wife Jane in their home in Newton.  The interview for this article took place in his living room, next to the voice-actuated workstation he uses in his many pursuits.  He was sitting in a complex, highly mechanized wheelchair.  In the background, there were faint, not unpleasant, sounds of airflows from his assisted breathing apparatus.

     Barry was involved with South Boston interests for many years.  He formed the practice now known as South Boston Dental Associates.  When he retired from dentistry in 2001, he remembered that back in the 80s, he had come across the Paraclete Center on E Street  in a charitable guidebook.  It was in the list entitled “Small Charities with an Impact”.

     Barry had seen a small, three-person fishing boat known as the Rangeley Lake trout boat in Rhode Island crafts show.  His eye was caught by the boat’s graceful contours and the use of contrasting woods, giving it a naturally striped look.  He took a course in building such a boat.

     He then called Sr. Ann Fox, the Director of the Paraclete Center, and offered to build a Rangeley Lake Trout boat, partly as a student activity and partly as a way to raise some money.  She interviewed him, and when she found out that he was serious, she didn’t hesitate.  He bought a Rangeley Lake trout boat kit, was given a space on the Paraclete Center’s third floor, and went to work.

     Building the boat became a student project.  One of the Paraclete volunteer teachers, Michael McDonald, worked with Barry and coordinated the students who also worked on the boat.  Wooden boats require a lot of hand labor – fitting, sanding, sealing with epoxy resins, and so on.  The boat was completed in the spring of 2004.

     Remember that it was located on the Paraclete’s third floor.  Even though it was a relatively small craft, it was 15 feet long and weighed several hundred pounds.  Jack Shaughnessy, Sr., of Shaughnessy Crane offered to rig the boat out, an operation featured on South Boston Online’s front page (May 20, 2004).  The third-floor window sash had to be removed.  The trout boat was successfully launched in Pleasure Bay; the window was never right after that. 

     Barry’s best friend, another Michael MacDonald (but with a “Mac”), bought the boat.  All of the bidders left their money on the table, so a total of $9,000 was raised – Mike won the bidding at $5,000.  He now docks it on the Charles River and takes people for boat rides in it.

     Barry Siegel was also a regular in the Pan Mass Challenge.  This is a bicycle race from Sturbridge to Provincetown that is ridden each summer to benefit the Jimmy Fund.  Barry rode in it for the 13th time in August, 2004.  Over the years, he had raised some $160,000.

     But life is hardly fair.  Just after finishing the ‘04 race without a hitch, Barry was riding his bike to a business meeting and was struck down on Commonwealth Avenue in Newton.  The details of his injury are not important.  Suffice to say the damage was massive.  He lost the ability to move or control his body from the neck on down.  He was a quadriplegic.

     There are three clinics in America that work with people who sustain severe spinal cord injuries – in Texas, in Colorado, and the Shepherd Clinic in Atlanta, where Barry went.  Jane Siegel had to learn right along with Barry – quadriplegic care is constant, detailed, and highly specialized.  Most nurses aren’t taught the necessary skills.  As a sort of  “final exam”, Jane had to care for Barry unattended by clinic personnel for a 24-hour period completely on her own.  

     The equipment alone is daunting.  A bicycle-like device that Barry mounts serves to keep some muscle tone in his legs.  A tilt board subjects his body to the pull of gravity.  A rig like an overhead come-along lifts him in and out of bed.  Amazingly, Jane and Barry can crack jokes about all this – they call the aspirator that keeps his trachea clear a “Shop-Vac”.

     Barry and Jane met on a blind date when she was at Simmons and he was at Tufts Dental School.  The day was Friday, January 13.  They married six months later and have been together 38 years.  They have a daughter, who is an oncologist at Columbia Presbyterian in New York City. 

     Barry admits that he could not exist without Jane.  Her love for him is indicated by the quick, silent caresses she gives his cheek as she cares for him.  Barry talks of how difficult the first year after the injury was for both of them, but he says, “We had 36 marvelous years, and now we’re starting on Part Two.  We’ll see what that brings.”

     Among his many activities, Barry has become a member of a network of quadriplegics.  One of them is a man named Arthur Ulian, who has been instrumental in obtaining $28 billion in funding for NIH projects in the National Foundation for Spinal Cord Injuries.  Locally, there is state-funded program, The Home Modifications Loan Program, to help people with disabilities upgrade their homes.  Barry is preparing a pamphlet on this and many other topics critical to quadriplegics.  He is currently working with a policeman injured in the line of duty.  He is also in touch with Travis Roy, the hockey player who was injured in his first game and then wrote “My Eleven Seconds”.

     The members of Barry’s network talk with each other, discussing problems and issues only they can understand and communicate frankly to each other.  If you know anyone out there needing this kind of support, contact Barry at bsiegel2@yahoo.com

     Sr. Ann calls Barry “a continuing inspiration” to the Paraclete Center.  Inevitably, his condition causes one to ponder, “What truly makes a human being?”   Barry has an alert mind, an expressive baritone voice, liquid brown eyes, and a wide, wide grin, as well as a courageous wife, Jane, and a large dose of hope.  And his humanity is evident for all to see. 

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A cheerful Barry Siegel by his workstation at his home in Newton.

At work on the Rangeley Lake trout boat in the Paraclete.

The trout boat's launch on Pleasure Bay - A OK!