The Protagonist

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?”

“No why?”

“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 Duschennes Muscular Dystrophy and are confined to wheelchairs. There is no cure for Duschennes. 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 3am 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.



19 thoughts on “The Protagonist

  1.…god, can I tell you I have goosebumps? The subject matter (and how odd to call it that, and I apologize for it, my writer mind taking over first, that selfish writer mind…self absorbed writer mind) – but the matter is enough to make me implode with sad….
    but your writing…your writing – can I say this again YOUR WRITING…you have a gift — a beautiful gift….
    i hope you know that.


  2. Oh My, this honesty in word has left me without words myself. I do not know what to say. Because I think to myself, "there is nothing I could say to ease this child\’s suffering." – Except, that perchance to smile, to offer my heartfelt support to them. For them to know they are loved and adored by many. Simply by being here on this grand old Earth together in harmony no matter their abilities or disabilites. I am glad that I have heard their story and please know that I share this world with some of the most brave souls in the Universe and that the two boys you speak of are the brave souls and you and their parents as well.
    I am not very well read on this disease you speak of. I\’m sure you and your sister and the rest of the family are. I will be back again to hear more of these two boys lives in the making. please tell me about their minds, because the one things about this disease is that it does not affect the minds – these people are very intelligent souls. And I\’d say that your two nephews are no different and are both extremely intelligent kids.
    I have an aunt who is Down\’s Syndrome. Although, she may not have a huge I.Q. on some things, her intelligence exceeds ours in other ways. I think you probably understand what I mean by this. That we can learn from each other no matter what situation or what that the other is in.
    Thank you for coming by my space sweetie – I hope you guys have a nice Sunday. ~~Missy


  3. That was beautifully written.  It is true that society too often glorifies heroics as large scale thing, overlooking the fact that in their own right every individual is a hero.  Although nothing can be said to dampen the suffering you are right, these boys, and their family are heros and the world should be made aware of them.
    With respect to books showcasing heros with illness, there is an author by the name of Lurlene McDaniels who writes novels for young adults.  The protagonist in every story is a young person with a deadly disease.  The stories may be more for young girls than your nephews but they may be something that interests yoru sister. 


  4. wow…that almost made me cry! What a wonderful entry and beautifully wriiten…
    thanks for stopping by…
    take care


  5. Well done and you are right.  It is a subject swept under the carpet as soon as it gets out.  People need to get their arms around these children and the pain and suffering.  I had a friend who had a child with cystic fibrosis.  It was very painful to watch and the entire family were heros to me.


  6. Life-taking disease mixed with "child" is simply something that will never mesh in a person\’s mind without the word why.


  7. i am in tears!
    its heartbreaking when the lives of children suddenly come to an end.  it hurts to lose those that have lived long.. but when children die its a travesty.  for who they are, who they wanted to be.. and who they loved and left behind.  thanks for reminding us how lucky we are, and how precious life is. 
    J  🙂


  8. Thanks for writting this.  I will remember Logan as a very happy, brave boy who lived his life to the fullest. I am very sad about this loss, frightened about the future of my own boys, but, I will continue forward with hope for the future.  Anyone wishing more information about this disease, or to make a donation in memory of Logan, please visit the following website: Thanks.


  9. This is just beautiful.
    And sad.
    And insightful.
    You\’re right. I can\’t think of a story that has a protagonist with a disability. Even in movies. Mostly, the character in the wheelchair is a secondary character — like the token gay friend or the token black boss.
    I have always believed that there is grand, cosmic purpose for every thing. But I have the hardest time figuring out what the grand, cosmic purpose is of profound disability. Some kids have such enormous struggle. It makes me sad. I hope there is a purpose. And I hope the payoff in the end for these kids is spectacular.


  10. Another wonderfully written piece, I just couldnt stop reading. The saying goes the star that shines twice as bright burns half as long, what if its ony one fifth as long?
     It reminds me of when my father passed away from leuchemia, aged just 41. I was about to launch into a grandiose piece about feelings, sentiments and wheelchair ridden heros in cartoons but instead Ill sign off with my very best wishes to your sister, her husband and their flock, well as good as the wishes from a stranger in a country thousands of miles away can be good . And to the Dinosaur club, may they continue to be a beacon to children with similar conditions. Im sure Logan will be remembered by all.
     Craig xx 


  11. My first thought was also. Two in wheelchiars.  Oh my.  I think of the love and selflessness of the mother of children with such physically demanding needs.  I believe there is a special place waitng for people like your sister. 
    I also realize that wheelchirs do not affect one\’s mind.  I care for disabled people.  Its amazing how people talk slower and clearer to the patients in wheelchairs. 
    I loved this beautiful post.  Your sister knew she could call you and thats what she needed.


  12. @Kathryn
    You are too kind Kathryn. The subject matter I think carries the entry. When I tried to tell my husband about the funeral I couldn\’t get the words out. I had to look away and I still felt my throat tighten up and tears come to my eyes. I cried when I wrote it. There is, inside of me, a part that is still like a small child and I daydream sometimes that I have the power to change the world. This thing (children that leave us too soon) is one of many things that make no sense to me, one of the things that have no rhyme or reason and in my daydream it is the first thing that I change. It sounds childish I know but I can\’t help but dream that it would be different.
    I do know what you mean. Each perspective is a gift if you are willing to share it. We all find something different in our world but that only increases the value rather than lessens it.
    Heroes do come in all shapes and sizes don\’t they? I\’ll be sure to check out Lurlene McDaniels. Thank you.
    Thanks for returning my visit.
    Cystic fibrosis is another one of those diseases that make one feel so helpless. I hate to sound cliche but why is it that we can put a man on the moon but we don\’t even have a decent treatment for these devastating childhood diseases?
    I think it might be because this is their lives and they live it everyday. They are incredibly adept at making the best of their situation. It is overwhelming. They are everyday heroes.
    I know…but there is no answer to that one.
    I do look to try and make sense of it all and I just end up running in circles. We\’ve made so many advances in medicine and society but we are powerless against this random biology.
    You know I love ya…anything you need, I\’m there.
    I\’ve given a lot of thought in the past year or so to the nature of life, what it is and what it isn\’t. I do hope there is some great pay off for the pain and suffering that is the companion to many lives in this world. I hope that whatever passed for karma or justice weighs the scale and pays atonement in multiplies of millions for the afflicted and tortured. I hope….
    Bless you Craig.
    Kathleen I\’ve never understood why people treat other people in wheelchairs like they are less than human or not whole. It is not the outside of a person that determines his or her intellect or humanity. One day my sister was commenting on how great my son was with her boys (his cousins) and I hadn\’t the slightest idea what she was talking about. He just treats them like his younger cousins with an odd mixture of good natured teasing and give and take. She said it was unusual and I thought how sad that was… that his treatment of those boys as just boys like himself was a rarity when it should be the norm.


    You, my friend, never cease to amaze and impress me.
    This was breathtaking.
    How are your nephews holding up?
    Prayers are being lifted…


  14. First, I don\’t think that people thing a child born disease lessens the pain of having one who is ill, but I do think having multiple children with a disease DOES compound the pain.  In a way, I wonder if a disease-free kid in such a family might not suffer, because of all the resources both material and spiritual (for lack of a better word) that must be devoted to the kid with the problem.  That boy who passed away certainly did so as a hero.  Odd how often the young can be so brave.  The parents should know what a wonderful job they did raising a boy of such quality.  It has been an odd thing that I have noticed, and I don\’t think I am imagining it, but the children I have known who died young seemed to have lived a life where they were more alive than other kids their age.  My brother Frankie, killed at age 12, was so like Calvin of the comics – utterly cast down when sad, totally in transports when happy – so fully into anything he cared about.  There seems to be this living life at twice the volume and twice the pace, even though the end can\’t sometimes be foreseen.  I feel for your sister and hope that the children are as happy as they can be always. 


  15. @EdgyKay The Kindhearted Pirate
    The boys are hanging in there. My sister and her husband are going to be changing roles. He\’s going to be home for a while to help with the boys (it\’s pretty much a full time job) and she\’s going back to work after being off for a year or so doing the same. They live in this old house that needs a lot of work and there\’s a group that\’s going to come in and install a wheel in shower because the boys are getting too big to lift into the bath. There are some wonderful groups around here which is great because my sister and her family can use all the help they can get. Thanks for the prayers Kay. Every little bit helps.
    My sympathies on the loss of your brother David. How absolutely heart breaking that he left this place at such a young age. The young are staggering in their bravery. They are so pure I think that they aren\’t weighed down (for very long) by the tragedy of their situation. The nature of a life cut short is tender in its expression and brilliant in the execution of a single expression of all the potential  and love that a soul holds.


  16. My simpathies for your pain and that of your sister… there is no way I can express how completely wrong it seems to me that children suffer so much. It seems that there are so many adults in this world, who have lived their lives and made their mistakes and exalted their glories, who are more ready to die, and yet it is the youth who do so more bravely and matter of factly than anyone else seems able to do.

    About 20 years ago, through one of my dads girlfriends, I made friends with a young boy with MS… no one expected him to live past 6 or 7 years of age… he was 6 when I met him, and one of the bravest and most positive thinking young persons I\’d ever known. He is now grown, living in his own home in New York with a wife and a couple of beautiful children. The doctors continue to say they don\’t expect him to live much longer.


  17. Yes it is true that this is a very sad story. But with the facts and this being reality, I really enjoyed reading this. You may even consider giving a copy to his Mother. You might feel a bit akward about this, but put yourself in the reverse situation. I think I would love to have a story like this about my son. It would definately show how many lives he\’s touched . . . even mine, accross the country!!!


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