A protagonist is defined as the main character in a drama or other literary work. The tone of the story, the moral to be expressed, determines the nature of a main character, that being good or evil. To follow the narrative from the perspective of the protagonist is an opportunity to gain an understanding of the rhythm of the times that are presented to us in the telling of the tale, fictional or real. Some synonyms often cited are champion, adventurer, paladin, exemplar, star…in a nutshell, for better or worse, the hero.
The shrill screech of the telephone woke me from a deep and empty sleep.
“Have you read the obits today?”
“Someone from Dinosaur Club died.”
I sat up in bed, “What happened?”
“Don’t know yet, he was only 17. He had the same type of MD as the boys.”
“Do you want me to come over?”
“No I ‘m okay, thanks any way.”
“Okay… I’ll talk to you later?”
“Alright, love you.”
“Love you too”
My sister broke the connection and I sat with the phone in my hand processing the information before the buzz of the empty line brought me around to the here and now. I dropped the receiver into the cradle and lay back down. The birds were singing outside and the heat of the day was trying to make its way into the room through the slats of the wooden blinds but it was still cool away from the window. It was harsh news for Sunday morning especially when my Sunday morning was Sunday afternoon due to a late night Saturday. I didn’t know if I said the right thing. Maybe I should have insisted on going down there. I knew she wasn’t okay but I also knew that I couldn’t take it away or make it any better.
Both of my nephews have Duschenne Muscular Dystrophy and are confined to wheelchairs. There is no cure for Duschenne. There is no treatment. In the rare circumstance when it comes up in conversation whomever I’m talking to will invariable say something like, “Both of her kids…wow …that must be pretty rare both having it.” and I answer as always “No it’s not rare at all for siblings to experience the same genetic disease.” But I know why they say it. To them it must seem a greater injustice, insult to injury really, that not just one great tragedy should strike a family but two or even three. But it is a great fallacy to think that the birth of a child unafflicted by the circumstances of the sibling would lessen the suffering of a parent of a disabled child. There is no joy or leavening of that particular pain.
My sister and her husband do what they can, what anyone would in their circumstances. They love their boys. They try to do right by them and be good parents. It’s hard in ways that someone who doesn’t have to live it can’t even imagine. They aren’t alone. They are one family in a largely invisible community of parents and children who struggle through, taking joy in small victories and refusing to allow the set backs to drown them for very long. They support each other when they can, walking intersecting paths on a winding and steep road. Dinosaur Club is one of the places where the families can connect.
It’s a warm spring day and my sister and I are killing time after watching my son’s track meet. We’re in a drug store and after we finished an aroma critique of the perfume aisle we decide to browse the book section. Her attention is caught by the bright picture of a Robert Munsch book that she picks up and exclaims over. To me it seems much too young for the boys and I tell her so. She counters by showing me the cover emblazoned with a young girl roaring away on a souped up wheelchair. She tells me that it’s really difficult to find stories featuring kids with disabilities so she’ll consider it even though the age group isn’t the best. No one seems to want to tell tales that have wheels or crutches, braces or harnesses.
I cast my mind back over the years and the pages looking for heroes that roll or limp through story lines real or fictional. Raymond Burr comes to mind, his hard eyes staring back at me from 3 AM reruns, fascinating in black and white. The boys are way too young to know about him. If I didn’t have an addiction to late night television I probably wouldn’t know about him either. There is Rick Hansen with his Man in Motion Tour but that’s before their time as well. They’d be more likely to know about Terry Fox as his run to raise money for cancer research is still commemorated each year at most levels of education. Even though Terry died young he would seem like a full grown man to boys my nephews’ ages. It would seem that pages recounting the adventures of the Hardy Boys on wheels or those meddling kids with walkers who break the Case of Evil Zombie Island et al are a rare find.
Later into the week the after dinner clean up was interrupted by the ringing of the phone. It was my sister. She and my mother had gone to the funeral earlier that day. I knew that it would be difficult for her with the parallels she could not help but draw to her own life nevertheless those were also the reasons it was important to her to be there. I asked her how it was and to my surprise she said that it was okay. She had thought that the mother would be a mess but she said she was holding her own so far. As odd as it sounds my sister said that the 17 year old boy had brought comfort to his mother and eased her suffering in the last hours of his life.
A flu had run its course through his family and he had died from respiratory failure. The mother told my sister that she had been afraid that her son would fight the end but he hadn’t. He had turned to his mother and told her he wouldn’t need the oxygen anymore and that he just wanted her to hold him. After awhile he slipped away, peacefully. His bravery and dignity, the love that he showed in the last moments of his life, brought her a great comfort.
These aren’t the sort of things that you usually read about in books. The protagonist is usually made up of more media savvy or lionized epic traits. Children dying of horrible diseases don’t make good light reading. Regardless, this particular story, by the best definition, this narration of a brief life, would define this 17 year old boy as the exemplar, the mainstay, the standard-bearer, the warrior…the protagonist, the hero.
It’s not a story that anyone should have to live, but of course they do. When my sister talked about books for her children with characters they could relate to I know this isn’t what she meant but maybe it is a story that everyone else should know about. That boy wasn’t a noted athlete, a famous detective or a great romancer. He was a boy that life had dealt a really, really unfair hand to and he played it as best he could.
That is not the story of a secondary character. That is not the life of a marginal individual. That grace and dignity in the face of the almost incomprehensible contemplation of ones own end is something we should venerate. In the end we are nothing more than ourselves. That can be base or in the case of this boy, a glorious shooting star, the light of which is brief and intense but more beautiful in its brave blaze.