Terry Fox

Terry Fox statue in Ottawa

Image via Wikipedia

Terry Fox Day, week, month, millennium – take your pick – is upon us again. Being a Canadian hero/icon, it’s hard to get away from the fundraising done in his honor/memory during the month of September, but Dee continues to be unsettled by the nation’s adoration and determination to carry on the fight against cancer – via money – in his name.

As I do every fall, I sent numerous email reminders to the school asking that Dee be allowed to opt out of all the assemblies and/or information sessions about Terry. They nearly all include some sort of visual representation of Terry, and she simply can’t see the guy without it conjuring up negative emotions. I have told her that someday it won’t bother her as much to which she replied,

“It will always bother me.”

Perhaps this is due to the fact that her first encounter with him occurred shortly after our moving up to Canada from the U.S. when she was dealing with all sorts of adjustments and readjustments, and poor Terry was swept up into the emotional stew never to be released. Whatever the reason, neither Rob nor I feel that Dee’s participation in Terry Fox Day is important enough to force it on her. It’s just another made up holy day. She is happy to take her toonie and walk with the other kids during the walk/run in his name and that’s fine with us.

Inadvertently, however, one of the staff showed her class a video about Terry last Friday. When she informed me, all I could do was sigh. I can’t run interference 24/7 and I told her that. Sometimes these things will happen and she is going to have to open her mouth to object herself or suck it up and deal.

“It couldn’t have been that upsetting,” I told her.

“It was,” she insisted. “It makes my tummy feel uncomfortable.”

“Not that much,” I countered, “or you would have spoken up, and you would have said something as soon as you got home from school.”

She couldn’t refute that because she didn’t mention it until later that evening as we were on our way to shop for birthday presents for upcoming parties to which she has been invited.

“I still didn’t like it,” she replied.

And I don’t imagine she did. I can’t stand watching movies or television shows that depict death or grieving. It’s just not entertaining.When you haven’t experienced something, seeing it is enlightening and gives you a chance to mentally try it on and live it, but once you can call an event your own through first hand experience, the vicarious thrill isn’t so thrilling anymore.

Terry Fox reminded me though that although Dee is a bit over experienced in the dealing with death department for someone her age. She still needs to be prepped in advance of  incoming where death is concerned.

Rob and the older girls have another funeral up north to attend, and as I was explaining to Dee why were weren’t going (Rob and I are agreed on no more funerals for Dee unless she had a relationship with the deceased), she inquired as to whether or not she and I would be taking care of Edie’s dog, Loki.

The dog is getting on in years and has been suffering with diminished mobility that’s gotten worse over the past year. He can’t be left home alone even if it’s just overnight, and he is getting to be too much work to ask someone to take him in for a couple of days here or there. Still, we’ve taken Loki before, soDee’s question was a logical one.

“No, honey, ” I said, “Loki is a lot of work now, and he is more comfortable being with Edie anyway.”

“Because of his legs?” Dee said.

“Yes, his legs aren’t getting better, and Edie knows best what to do for him.”

“They aren’t getting better?” the tone and not the words contained the actual question.

“No,” I said, choosing my words very carefully. “Sometimes, doctors can’t do anything, and they can’t do anything for Loki. His legs will get worse, and then he will not be able to use them.”

She nodded thoughtfully and said, “That’s why Edie is getting the wheelchair thing.”

I nodded, “But that’s just to make things a bit easier. Loki isn’t going to get well.”

“Animals don’t live forever,” she agreed, “and neither do humans.”

And that’s where the conversation was left. Later on, as I retold it to Rob, I pointed out that it was only in the moment I realized that Dee needed advance preparation for the inevitable where her sister’s dog is concerned.

The dog, in a twist of ironic fate that makes me dislike the universe’s odd sense of interconnectedness, is suffering from a demyelinating illness that is slowly paralyzing him. Once it’s done its dirty work on his lower half, it will travel up the spine and leave him essentially trapped in a useless body. It’s very similar in effect to the disease that killed my late husband, Will. It’s not consciously painful, but the collateral issues can cause discomfort and anxiety. There isn’t much that can be done because science just hasn’t found a way to replace the damaged myelin sheath that covers nerves in people or animals. Once the protective covering is gone that’s it. What’s left is no more or less than a prison made of flesh. To say that I am not eager to bear witness to that, or to the pain it will cause Edie, is understating and understatement.

Though Loki’s issues are not new, the diagnosis is and the game plan is in early days. Progressive degenerative illnesses vary from according to the individual, and so everyone waits, watches and hopes – but it’s never to early to begin to prepare. I am a Boy Scout in this matters, and so I laid a bit of the groundwork for Dee.

Tomorrow, she will hang out in the library while her classmates watch yet another inspirational video about Terry Fox, and then she will join them as they run or walk to raise money to beat a disease that will never be beaten. Death comes to all things and cancer or degenerative illness are but two of its avenues.

I wonder if the organizers picked the last month of summer on purpose? With its fading, falling retreat to pre-winter here, it’s a fitting season for such an event.


Photo of Terry Fox, Canadian cancer fund-raise...

Image via Wikipedia

Terry Fox Day is a Canadian thing. During the month of September, communities all across the country organize run/walk events to raise money for cancer research in Terry’s name. This year marks the 30th anniversary and celebrates the $500 million that has been raised in his name since his attempt to run the length of Canada thirty years ago.

What made Terry’s run special and inspiring to Canadians was the fact that he’d lost part of his leg to a cancer that would go on to claim his life at the age of 21. His cancer returned after a three-year remission during his trek and he never saw the finish line, but his family was determined that the run become an annual event and it has.

I first heard of Terry as a high school student. We read about him in our Catholic high school back in Iowa. It was one of those grisly teachable moments that the nuns and priests were so fond of when I was a child. “See how lucky you are that you aren’t one-legged and being eaten away by cancer?” was the gist of the lesson.

As an American though, I didn’t know the run went on to become a yearly event.

Until I emigrated to Canada three years ago.

Terry Fox came back into my life via Dee, who discovered Terry in kindergarten and developed a morbid fixation that plagued us for months.

At the school assembly, where footage of Terry’s original run was shown and the children received morbid Terry tattoos, Dee met up with death too young – again.

She created a tiny little shrine for the tattoo in our dining room and all manner of death, cancer and why questions haunted Rob and I more than our own dead spouses do when they are feeling feisty.

Last year, Dee asked if she could skip school on Terry Fox Day. She didn’t want to see any more pictures of him. They made her feel sick.

“So you don’t want to take a toonie or go on the walk?” I asked.

The kids bring “toonies for Terry” and go on a 3km walk in the afternoon. She loves donating coin. We can’t walk past a street musician without tossing change, and she adores group walks, which is ironic because “walking” her father is the eye-rolling height of boring in her opinion.

“No, I want to bring a toonie and walk, ” she said. “I just don’t want to hear about him or see him anymore. He makes me sick.”

A quick flurry of emails between her teacher and I resulted in Dee being excused from the assembly after which she happily strolled hand in hand with her teacher.

This year? Same thing. Pictures of Terry give her “a sick feeling in my tummy” and she would rather stay home from school (she adores school so much that she can make weekends unbearable for Rob and I) than endure the sight of Terry.

More emails. A new, and fortunately equally sympathetic, teacher will handle distraction duty.

My own feelings about the cancer run/walks is predicated on the fact that my late husband died of something rare and unglamorous and, therefore, not worthy of fund-raising. The boobie bracelets for breast cancer and the fun-runs for cancer research in general distract from the fact that most people die of something other than cancer.

Rob’s heart attack is a stark reminder that cardio-vascular ends await more of us than cancer does and, between it and accidents, that’s how most of us who don’t die old and asleep in our beds will shuffle off this mortal coil.

Despite losing my father to lung cancer and Rob losing Shelley to melanoma, I feel removed from the whole cancer thing most of the time.  I have read too much to believe that there is a cure anywhere or ever, and I am a bit hesitant to cheer for treatments that mostly seem aimed at allowing death to whittle away at you at the expense of life’s quality and at the greater expense of the physical, spiritual and mental well-being of your loved ones.

Dee took a toonie. The school’s gym isn’t finished and so there will be no assembly, but her teacher will shield her from any reading material the class goes through. And she will walk. She does love to go on those walks, which I am grateful she is healthy and able to do.

Thursday was the Terry Fox Run in schools all across Canada. The day is part of an extensive effort by the Fox family to honor Terry and his wish to raise money and awareness for cancer research. Terry began the original run called The Marathon for Hope in 1980, three years after losing his leg to bone cancer. He captured the hearts of Canadians by pledging to run across the country, taking pledges and donations for cancer research as he went. The marathon began with just Terry and a friend who would follow him in a van as he ran 26 miles every day. He started in Newfoundland and as the miles piled up he attracted followers and donations. Terry made it as far as Ontario before he was stopped by a recurrence of cancer. It was in his lungs. Terry reluctantly stopped running, but the next year Canadians picked up where Terry had left off and to date the Terry Fox Foundation has raised $400 million dollars world-wide for cancer research.

I knew Terry’s story before moving here. I was in grade 10 at high school the year Terry attempted to run across Canada. I can’t recall the context in which I learned about him. Maybe it was in school or perhaps I read about him in the newspaper. School children in Canada remember Terry by bringing “toonies” – two dollar coins – to school and by participating in running and walking events. Katy hadn’t heard about Terry Fox Run Day. It’s not something they do in schools in Iowa though Terry’s run is a world wide phenomena now. She was quite caught up. We had to make sure she had a “toonie” to donate. She had no idea what the day meant or who Terry Fox was though. I didn’t stop to consider that the children her age might be given too much information concerning Terry’s illness or death, but apparently they were. Since last evening Katy has quizzed both Rob and I about Terry, cancer, and why people don’t get better even with medicine. Since her father’s illness, and more-so since his death, Katy can fixate a bit when somehow she knows is ill or she hears about someone dying. Especially if that someone is young.

Rob was very matter of fact with Katy at supper yesterday when the cancer questions came up. Like me, he goes clinical and deadpan when discussing disease and death. Unlike me, well me most of the time anyway, he tends to give out more information than is technically necessary. “You need to give me a sign or something,” he says but it’s hard to put Katy off. She is a smart little girl and a persistent one.

The whole incident made me think about a recently published article about PTSD (Post Traumatic Stress Disorder) and children of cancer patients. The study found that having a parent with a life-threatening illness can cause PTSD in children and the effects can linger for years. Many of the symptoms are things I have observed in Katy though to a lesser extent as time passes. Some of the symptoms were things I had suffered myself in the aftermath of sitting alone with my late husband the night he died. Like my daughter, I have a hard time with the knowledge of anyone’s illness or even suspected illnesses, but I am torn about shielding her too much. How much is too much? My father is dying. He has a progressive lung disease. I am told he is spending the majority of his time these days in bed and that he isn’t eating or drinking much. I spent enough time in hospice to know what that means. We are heading to the States for a visit in a few weeks and I don’t know really know what to expect for me or for Katy. It may well be the last time we see him alive.

Back in the day, people cared for their aged and sick in their homes. Both my parents can recall the deaths of their grandparents. My mother’s older sister will tell you that both of their mother’s parents were bedridden. Grandma was their only child and caretaker for not just her elderly parents but five children and a husband, who as an aside was having an affair with the girl she hired to help her out with the care-taking of everyone but herself. My dad was just three and sitting in the summer kitchen with his grandmother when she keeled over in front of him. The wakes were at home after family prepared the bodies. Wakes could last a few days, I am told, in order to accommodate family that needed to travel from a distance. Were my parents, aunts or uncles traumatized by the close proximity to death? My great-aunt was just a little girl when her three younger sisters died in rapid succession during the Spanish flu epidemic. She still cries when she talks about her sister, Emily, and what a beautiful little baby she was. No one was shielded. When my dad’s aunt died of cancer it was at home with her husband, two very young sons in attendance. Maybe we are too far removed from death anymore. We have been led to believe that death is an anomaly. Something that happens mainly at the very end of a long life. We certainly scrap against it and deny its possibility. Hide its raw reality from ourselves in any way that we can. When we do let it out in the open it is through stories like Terry’s because we want death to be meaningful and uplifting in a movie of the week sort of way even if it’s a lie that we tell ourselves.

I think death is traumatizing and it has always been that way. The difference between now and then is the level of involvement we allow ourselves.