Thursday, February 28, 2013

About love, paraplegia, and assisted suicide

Jojo Moyes’ recent novel Me Before You is most often described as a modern love story.   I enjoyed that aspect but it intrigued me for another reason.

The setting is England where 26-year-old  Louisa Clark has recently lost  her job in a café. She is desperate for income.  So with strong encouragement from her family, all dependent  on what she brings in, she accepts the position as caregiver/companion to Will Traynor, a paraplegic because of traffic accident.

Will, a former successful businessman, an angry man, is bitter about the  accident  he did not cause that has determined  he will be without feeling from the neck down for the rest of his life. Forever in a wheelchair. 

He tells Lou: “I loved my life. Really loved it.  I loved my job, my travels, the things I was. I loved being a physical person.  I liked riding my motorbike, hurling myself off big heights.  I liked crushing people in big deals. I liked having sex.... I led a big life.”

He is determined that the “rest of his life” will be short. He plans to travel to Switzerland where, with the help of the organization Dignitas, he will take the final action to end his life.  

Over the weeks, as Lou cares for Will, she learns to love the person he is, not what he can do.  She accidentally becomes aware of his “due date” in Switzerland and determines to make him to see that even without mobility life is still worth living because she loves him.

On the other hand, as Will learns to know Lou, he  recognizes that although she is physically able,  she is paralyzed in other ways.   Though 26 years of age, she has never had any goals other than earning money.   Intelligent, she has never read books, heard classical music, or traveled.  Her boyfriend, a physical trainer, provides her with sex, nothing more. Life is a dead end for her as much as it is for Will. 

Even as Lou  is determined to keep Will alive, he is equally determined to bring her to life  and  see the possibilities of a rich, full life outside her little space. 

While I enjoyed the love angle, I kept comparing Will’s determination to end his life to my brother’s efforts to stay alive though also a paraplegic for the last decade of his life. He died in 2010 at age 83 of a stroke.  

My brother, Jack Funk, had multiple sclerosis, first diagnosed in the late 1960s.  When life was getting too difficult without more assistance, he and his wife Patricia moved from their home on the bank of the beautiful Battle River in Saskatchewan, outside Battleford, to Saskatoon to a care facility. 

He took up residence in a room with all the equipment needed to hoist him and look after his needs, she moved into an apartment in an adjoining  building. They left behind 18 years of significant living:  a comfortable lifestyle with hot tub, breakfast on the deck, weekend trips, and visits from family and friends. 

Behind him was a 23-year career in education followed by years as a senior official in the Saskatchewan government and then assistant superintendent of education for the Department of Indian Affairs.  As he researched this group of people he grasped the depth of their oppression and became a voice for telling their stories. 

In Jack’s book If You Wait Someone Will Come: Life in Interim Manor, he admits the move was traumatic, because such moves are an admission of failure, for him  caused by a combination of “ill health, frailty and circumstances.”  They  couldn't  carry on alone any  longer.  A cure was not in the future. Now what? 

His book, a mixture of satire, humor, and information, looks at life in a care home from the viewpoint of a careful observer.  His insights into life with paraplegia  merit wider distribution. The cartoons are priceless, the humor without equal. “There’s a  lot of nudity around here, but don’t expect Madonna,”he comments.

Jack’s  openness about his condition did not come about readily. For many years he wrote me letters, often weekly, with never a hint about his health. He edited an occasional Funk family newsletter, with news provided through emails from family members scattered worldwide.

His computer was his lifeline.  He described wonderful restaurant meals, concerts, lectures, and more. He valued visits from children and friends.   But his condition deteriorated until he could  move only his head and speak. He dropped the newsletter from his self-assigned tasks.  

He became depressed when he could no longer communicate with others at will. But then he turned to voice recognition software, which once again gave him an opening into the world outside his small universe.  He wrote books, with Pat, his faithful wife, helping with editing and aspects that needed footwork. 

But multiple sclerosis is relentless, if slow-moving. . Only when I read his book did I sense fully that at times he must have felt like Will Traynor—ready to give up.  He yearned to be listened to, to be seen as still relevant.

He wrote that the  task of  helpers and friends  is  about letting residents  know they are “people of value, that they are needed, even in their family. They need to experience that they still have a contribution to make, simply by being here.”

Simply being there. 

What do you do when you’ve been  pushed into a spot in the care home and forgotten?  You’re there, but does anyone else care? Do you watch the grass grow? Count the flies buzzing in the room? Guess the number of feet one fly flies in 15 minutes? He can’t scratch an itch. 

His  only operative muscle was  in his neck which allowed him to nod, turn his head, and push buttons with his chin. But when you’re “parked” you’re  away from your television and computer and your  call button gets no response. Help is hired, and most helpers are wonderful people, yet it is hard to synchronize body functions when you are paralyzed with a worker’s schedule. 

So for a while each time he waited he made note of what was said in response to his call button, pushed with his chin. He tabulated the responses:  “Did you want something?” (12 times) “Wait, someone will come” (18 times), “In a minute” (15 times), “Your girl went for supper,” (14),  and others.  

 If he waited long enough, someone would come. Yet he acknowledged the wonderful people, often overworked, on the staff. He trusted his life to them. 

Moyes’s Will doesn’t want to live without sex, a major part of his life before the accident.  Jack describes what for him is “conjugal time,” a poignant but tender description of intimate times with Pat though helpless.

Read Me Before You for a great modern love story.  Read Jack’s book for realism about life as a paraplegic.  

Jack’s other books are I Was Younger When I Was a Boy and Outside the Women Cried (available online) written with voice recognition software. 

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