Our Amazing Friend Mr. Bill Niles

“Mr Bill “ Niles
(Sept 2 ,1918 – Nov 18, 1997)

Bill has been and will always remain a treasured part of our lives. We each have had a special , enriching relationship with him and could share many touching and joyful stories in tribute to him. I would like to share some of mine and Cyndy’s.

A few years ago we had a literary brainstorm. To offset in some small way the barrage of bad news on the front page of the daily newspaper, down by the guide to features it would be a great idea to run a brief column aptly named “Good News” which would spotlight the best in human beings, the essential ,everyday or extraordinary goodness in character,words and deeds that inspires. Evidently this was too good an idea because none of the two dozen newspaper services we sent it to picked up on it, but as a prime example of “GoodNews” I wrote this story-
“ Our Amazing Friend Bill”

“Now don’t be scared when you see me do this ; people get scared- I’m all right!” With that preface ,down went the back of the electric wheelchair against the bed. Using a combination of olympic wiggling, power elbowing,two finger pull-ups on side rails and trapeze ,he transferred from the wheel chair to the bed. He was winded. I was completely amazed. Though his legs were withered, his thin arms were very strong. “Been doing that at least twice a day for years- the man on the flying trapeze- that’s me!” , Bill declared. This stunning transfer was my introduction to Bill Niles, a courageous man in his seventies living with the physical burdens of cerebral palsy, navigating his way through life since childhood in a wheelchair , guided with astonishing will,wit and faith. I was privileged to join a circle of home health aides and nurses (during my two years of nursing school ) who cared for Bill in his special home. First he was my patient; soon he became my friend. My wife Cyndy ,the inspiration for my career change from teacher to nurse, had always treasured her home visits to Bill for a number of years. She’d recount that at the end of a long and complex day of trying to help and heal patients she would arrive tired at Bill’s apartment and leave an hour later refreshed and renewed by the encounter. Cyndy hoped that I would someday meet Bill and as fate would have it I certainly did. During my weekly visits as his HHA ,Bill and I shared life experiences, philosophy, lots of laughs and some tears man to man. A special common bond was music , the great bands and singers of the 30’s through the 50’s. We would swap copies of tapes and at Christmas have a live songfest with some talented young musician friends of mine.

Bill related his personal adventures too: taking care of his ailing parents, proving to a doubtful doctor when they passed away that he cold live independently and would not have to spend the rest of his life from age 22 in an institution. He has experienced the worst in people when robbed at knifepoint and another time when he returned to a ransacked apartment. Somehow it seemed very just that the local police apprehended the perpetrator and he met with some accidental injuries on the way to the station house. These cruel encounters in no way soured Bill toward his fellow man because he had seen the best in people, especially the wonderfully generous “adoptive” family which shares his life. Ask anyone among his family and friends and each will say how much more is received than is given in the relationship with Bill. He’s a pleasure and a treasure to know. After a mild stroke and hospitalization he made the heart-rendng decision to give up his beloved apartment and move to a nearby nursing home. “I’ve cried myself to sleep more than once, but I’ve accepted this as my new life “, Bill says. “There are compromises ;I’m secure here, have good care and some friends here and I can keep listening to my music” “I have my ups and downs, but I just keep going!”
I just keep going too- each week to visit Bill , to share an occasional sorrow,but always his laughter, music and inspiring friendship.

That was the end of that story , but just a glimpse into Bill’s story, the truly “good news” that was his life. Bill’s life was one that could have been mostly tragic, but became triumphant, could have been mostly sorrowful ,but became so much more content,peaceful and happy. This transformation of spirit over circumstance was due to his courageous character and to the committed care of those who shared his life through his later years –the VNA home health aides,therapists, nurses, his Nurse Practitioner Cyndy and Doctor Fred Dolgin from Manet community Health Center, the devoted staff at Robbin House…but always and most of all his “adoptive/adopted” niece Charlene and his honorary “Brother-in-law” Ivan, their family and friends. In every way and virtually every day Charlene and Ivan supported ,fostered, provided for and and advocated on behalf of Bill. And speaking of advocating –as one of countless examples, who can forget the mighty marshalling of letters and witnesses Charlene organized for the hearing last December in Boston when Bill’s lifeline ,his electric wheelchair seemed threatened. Talk about “power to the people”! Bill’s last wheels were state of the art and could he ever maneuver! Charlene and Ivan’s love for Bill in thousands of good deeds has been extraordinary and profoundly inspirational. Though Ivan gives most of the credit to Charlene he said so well, “Bill set off a spark in everyone who came close to him.” Bill really enlivened each of us with his sparkling spirit.

What an impact he made. He gave us the gifts of gratitude,for and perspective toward life. Bill had only a few material possessions,each of which he valued and enjoyed to the maximum. – the portrait of his beloved Mother watching over him, the television which connected him with everything from wrestling to the latest court cases ( while he snacked and partook of a beverage) , and his sound system which gave him endless enjoyable hours of listening to and taping his beloved music. I’d joke with him that he could start his own radio station ,he had made so many tapes- and each one marked in his hand with only an “x”. Bill could not read or write and he had difficulties speaking ,but conveyed such compelling thoughtfulness, common sense and insight on personal problems and world events. He was physically handicapped , but so determined to be independent ,asking for and grateful for only the assistance he absolutlely needed. He was remarkably graceful , dignified and respectful and wonderfully full of mirth and merriment. What a marvelous and miraculous person!

As we held our farewell vigil at Bill’s bedside in the hospital and nursing home this past week ther were tears for the loss of his presence , but more laughter for happy reminscences. Cydny and I have precious memories of Bill at weddings, sing-a-longs,visits to our home, outings to Quincy and Boston and our last excurion was the unforgetable best. For his 79th birthday celebration we took Bill into Boston on the high-tech water shuttle the Harbor Express. Comfortably seated inside we set out from Fore River shipyard , amazingly saw a seal swim by right next to the boat as we passed Germantown, then we continued our tour past Houghs Neck, Peddocks ,through the Long Island Bridge, past Spectacle and Castle Islands ,the airport, the inner harbor, all the while Bill listening to our travelogue and happily taking it all in. Arriving in town we spent some time exploring the waterfront, Christopher Columbus Park, The Rose Kennedy Rose Garden, watched little kids romping in the playground (there always seemed to be a mutual affection and fascination between Bill and children.) We talked , had a snack, and bought a postcard souvenir for his bulletin board. Then it was time to reboard for the cruise home. Cyndy and I took Bill out on the semi-sheltered port side deck and set him up with his trademark can of beer sipped through a straw. The captain opened the engines up and we were really off and flying! Bill was absolutley elated- he loved the sheer speed and whipping wind and when we hit the large wake of a passing commuter boat a giant plume of spray crashed and splashed by ,Bill looked up at us with a delighted sparkle in his eyes, laughed ecstatically and whooped ,”Hallelujah!”

This is how we will best remember Bill- our beloved and loving, indomitable and inspiring friend- Hallelujah ,Bill, Hallelujah!