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Archive: March, 2014

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St. Michael’s

I remember the schoolyard at St. Michael’s,
named after the protector saint,
the sun burning the patchy grass,
the rusty soccer nets, the chain fence
the only thing protecting us
from the rest of the world.

I remember running around with my friends
chasing bugs, catching them, trapping them in jars,
torturing them.
Not once considering
my connection with something
so small and helpless.

I remember watching kids play soccer
laughing and running around carefree
in the rough grass,
wishing I was cool like them,
but I never joined in.

I remember the shade of the big oak tree
keeping me safe from the world,
embracing me the way a father would a son,
taking away all the pain
and healing him with warmth.

I also remember falling in the middle of the soccer field
twisting my legs on the uneven ground,
no one running on the field then,
left there alone and scared, crawling back
to the school like a lone worm.

To some of my friends the schoolyard
might already be forgotten
like gum on the bottom of a desk,
but it is scorched into me
like a burn scar.

It’s where I stopped walking.
It’s the place that first put me
in my  mechanical and heartless
chamber, all steel
and painted grasshopper green –
my wheelchair,
my new legs.

‘St. Michael’s’ is a poem in Jake Slominski’s The Page They Forgot to Burn.

____________________________

Jake Slominski was born in Niagara on the Lake, and at age 5 was diagnosed with Duchenne Muscular Dystrophy. His work has appeared in the literary journal, Logos, and he recently studied poetry at Niagara College. Last year he won Honourable Mention in the Canadian Authors Association Poetry Contest and he had three poems selected for their anthology, The Saving Bannister. He is currently working on a collection of poems on the history of disability. 

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Your Wounds Are Part Of Who You Are

‘Bad things happen to good people.’ It’s a phrase I have heard dozens of times in my life. It’s also a phrase that I hoped would stay clear of my family, my friends, and myself. However, sometimes you can’t stay clear forever. This blog is quite the exact opposite of my last one, a total 360. The reason being, there is no way you could ever measure a happy life without sadness in the picture; happiness would lose its meaning.

Everyone tells you to think positive, and you will have a happier and healthier life. As children, we make lemonade, and are taught to see the glass have full. But, there are moments that can change everything. We learn at a young age to buckle our seatbelts, to wear a helmet, and look both ways before we cross the street. We do our best. But sometimes, it makes no difference. Bad things come… and they come out of nowhere. There is no warning. This past summer, my sister had a terrible accident, a close family friend, and aunt died, and I had an accident at work. It was just one hit after the other. I felt like I was getting the wind knocked out of me, while I was still on the ground struggling to pick myself up from the last hit. Usually when something bad happens that affects me, I shake it off. Pretend it’s not there and pay no attention to it. Would it do any good anyway? But, you do need to heal. You need to feel your feelings, things need to be said and you need to go through the whole process, whatever it may be. To allow yourself to heal, you need to be a victim for a moment. After that, you are what you choose to become.

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When Amanda Met Justin

Photo courtesy of Amanda Renneberg

You may have heard about the lucky girl from Sherwood Park, Alberta who was finally able to meet her idol, Justin Timberlake, after months of garnering support on her Facebook page.

Amanda Renneberg – the lucky girl in question – is 27 years old, and is affected by Friedreich’s Ataxia (FA.)

“It’s probably pretty obvious that my life has not completely turned out how I hoped and dreamed it would, but really, who can say their life has traveled this journey exactly how they thought it should? I was diagnosed at 18 with FA. Friedreich’s Ataxia  has drastically changed my life. I choose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.”

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First Chairman of the Medical Advisory Board

The Medical Advisory Board was created in 1958, currently known as the Medical and Scientific Advisory Committee. It provides advice and makes recommendations to the Board of Directors on research policy, granting programs, and funding. The Committee is comprised of dedicated volunteers from across Canada who have expertise in neuromuscular disease; together, they represent various perspectives from the health professional and patient communities.

Here is the introduction of the Medical Advisory Board and its first Chairman from page five of the April 1958 issue of the Muscular Dystrophy Reporter.

Founding of Medical Advisory Board

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The Tradition of Fill the Boot

Over the years Canadian Fire Fighters, our biggest supporters have helped Muscular Dystrophy Canada to continue to fund research, provide essential services and equipment to people affected by neuromuscular disorders.   Our long standing and strong partnership continues to be a historical pillar.  Throughout our history and to this day, Fire Fighters have been creative in their fundraising efforts.  Fire Fighters have had chicken wing eating contests, car washes, motorcycle rides but the most recognizable and used is the Fill the Boot campaign or the Fire Fighter Boot Toll.  Even with newer events like the Rooftop Campouts money is still largely collected in a Fire Fighter’s boot.

Below is a photo from the Muscular Dystrophy Reporter Spring Issue from 1966, showcasing the, “new amusing technique of receiving contributions.”

Band Concert FtB spring issue 1966 p3

The Fill the Boot has its roots dating back to the early 1950s in the Boston, Massachusetts area of the United States of America, a Fire Fighter came across a colleague who was with an old friend. The friend had two sons, both affected by neuromuscular disorders, who needed money for their care. With canisters in hand, the Fire Fighters raised $5,000. This grew Boston-wide, and during the International Association of Fire Fighters 22nd convention in 1954, the original fundraisers from Boston campaigned for the cause. The IAFF set up the partnership with the Muscular Dystrophy Association, which was also inherited by the Muscular Dystrophy Association of Canada soon after its founding.

 

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