Tuesday 27 March 2012

My Father, My Memories, My Son

Yesterday, I satisfied myself that Nick is feeling a little better, so I decided to turn my attention to other matters here on my blog. Last week, a message appeared in my inbox requesting me to consider adding a couple of live links to disability related products or services to my missives. The idea rolled around in my head for several days and I decided that because these particular goods or services sparked strong memories, I would agree to add these links. They pay me a small fee to do so and I've decided to try this scheme out IF the product is relevant to me personally or the experience of living with disability generally. Let me know what you think!

What many readers will not know about me is that my father had three debilitating strokes before he died in 1975. He was 54 years old when he passed away - I have already outlived him by seven years. Dad had a minor stroke when doctors discovered a blocked artery in his neck - the clot would have to be removed surgically. Our family was reassured that the procedure would be simple and successful. But, when Dad came back from the operating room, he could not speak or move the right side of his body at all. During the operation, a piece of the blood clot had broken off and travelled into his brain, causing millions of cells there to die.

Dad went to a rehab centre for a few months where he learned to stand for transfers into his wheelchair. But for that former McGill star hockey player and WWII distinguished veteran, there would be nothing to be happy about after his stroke. He died two years later after three days in a coma.

When I think of Nicholas' disability and my Dad's, there are stark contrasts. Of course, sometimes I feel sad about Nick's condition and once in a great while, as a I gaze at my boy's dear face, I enter that parental no-man's land of wondering what Nick would have been like without cerebral palsy. But mostly, he is happy and so are we with the person he is and always has been. My Dad, though, was another matter. Dad did not want to be a person with disability - he did not know how to do it. Nothing in his generation of maleness and unspoken emotions prepared him for the battleground of personal incapacity.

I have a memory of coming home after school and watching Star Trek. There was a character on the show, a former captain of the SS Enterprise, who was disabled after some kind of intergalactic accident. Later, I thought about him when my Dad could not move and I reflected on how this space captain could still command respect and have an important role in the running of things. I wanted that for my Dad.

Dad never lived to have the benefit of technology that enables Nicholas to communicate, to be lifted, to be bathed or to attend hockey games in his own accessible van. He sat, smoking, watching television and he did not want to venture out. Could part of that choice have been the effort it took to scale the stairs in our Montreal town house? Stair lifts are one type of revolutionary invention that spell freedom for those with mobility impairments - we had two in London to help Nick access various sections of the official residence.

I wish my Dad could have had stair lift solutions for mobility, a van, a communication device and a willingness to embrace all those innovations. I wish he could have discovered that it is possible to have a good life within 'the four walls of his freedom'.


BLOOM - Parenting Kids With Disabilities said...

What a moving and beautiful post!

I think you're so right that that generation had such an aversion to any kind of 'dependence' and had no way of envisioning a different type of experience with disability.

I am glad you shared this story. I bet your dad was really proud of you!

Anonymous said...

Hi Donna,

I believe Louise and you are correct by implying that in the generation of your parents, "there was such an aversion to dependence." However, one can counter act this feeling by finding a sense of self worth or purpose in life.

Moreover, we must remember that acquiring a handicap through stroke, illness or accident, is very different from childhood disability.

Lastly, the use of the internet has allowed me to access the world and transcend the four walls of my freedom, but I still yearn for continued medical care, education, human interaction and the ability to travel the world. For example, I will be undergoing mayor surgery, as an adult, in an attempt to combat the affects of cerebral palsy and restore some of my lost mobility. I also realize that I could be gambling with my way of life (as you did with Nicholas), but if the procedure is successful, I can begin opening the door to greater adult care. The medical community will be faced with a choice: Continued care, which maintains the health of a disabled person, or greater paralysis and death?

Our ability to reason, as well as our innate human capacity for compassion, should not only live within the walls of Holland Bloorview or pediatrics, which embarks upon innovative procedures and emerging technologies, but we must be compelled to bare the responsibility of extending these practices by building new partnerships, throughout one's lifespan, for all those who love their children and cherish life.

Please, "May we never stop turning disability into possibility."

Matt Kamaratakis

The Caregivers' Living Room said...

Hi Matt, your thoughts are truly a gift, thank you!!!