Modelling frailty

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The following piece was published in Facts and Arguments, The Globe and Mail,  April 29 2015 

‘I’m a model. You know what I mean? And I do my little turn on the catwalk.”

It’s been almost 25 years since Right Said Fred made this declaration in the brash song I’m Too Sexy.

At age 57, I’m ready to make that daring declaration myself: I am a model. Not perhaps what you might expect in a model: I ply my craft far from the runways of Paris, Milan and New York. My steps are more gingerly taken; cocky is not how you’d describe my demeanour – ambivalent, apathetic, angry might all come to mind instead about the facial “mask” I wear. It is a remote possibility that I’ll ever be featured in GQ.

In my early 40s, I was diagnosed with Parkinson’s disease, a degenerative brain disorder whose symptoms include muscular rigidity, tremors, slowing of movement, a shuffling walk and difficulty with balance. When I walk, often I’ll be lumbering along, swaying, dragging one foot and occasionally flailing my arms. Parkinson’s also brings such cognitive changes as memory loss and confusion, and often depression – all of which I can definitely say I know too well. Not exactly how one thinks of a male model.

But yes, I am a model. Not in the high-powered fashion industry but in the highly underrated, sometimes banal, not-for-profit parenthood industry.

I’m a dad to my three kids, a stay-at-home father for seven years, a parent for more than 20.

“What’s so great about that?” you may wonder. “While it’s one of the most important jobs, it’s not unique, and isn’t almost everyone doing it?”

Well, yes and yes. To a greater or lesser extent, and for better or worse, children look to their parents as models throughout their lives.

Typically, parents start on this journey with the best of intentions and later question our measures of “success.” As my Parkinson’s has progressed, I’ve placed my behaviours, thoughts and actions increasingly under the microscope. I’ve often thought about how my children see me as a “stay-at-home” father, in contrast to when I was employed as a teacher and social-service administrator. How has this shaped their model of what the “working world” looks like? Has it in some way diminished a father’s role and contributions? Would they all answer, as my eldest did, “That’s just the way it is – you’re a different kind of dad”?

When feeling tired or weakened (which, unfortunately, is often), I find it challenging to behave, speak and listen in ways one would consider an appropriate parental manner – with interest, respect, concern and compassion. It can be a real struggle. Are my children aware of this? Do they interpret my words and actions through a Parkinson’s “filter,” or simply find ways to cope?

As my ability to carry out daily activities becomes more limited, and constraints are imposed on more vigorous activities such as travelling, attending special events, visiting extended family or just doing chores, do they see me as no longer contributing to a healthy family life?

On the other hand, having a parent who is disabled presents them with a wonderful opportunity. Seeing their father try to cope with the wasting effects of a degenerative condition gives them a sense of how we all face challenges in life. It offers a connection to others in the community dealing with other difficulties or conditions.

I hope I’ve helped them develop a sense of empathy and caring, reflected through their volunteer work at a food-sharing agency, their extra-curricular volunteer work at school and their volunteering abroad, as both my daughters are doing at present. Or, more simply, in their considerate daily interactions with others.

My children are witnesses to my daily efforts to live life to the fullest. I write a blog, am engaged politically in the community and I do volunteer work myself. I walk daily, take aquafit classes with my mother and have begun a dance class for people with the disease. The dancing is particularly exciting for me. Dancing is a way of living life at its best; and my best, given the degenerative nature of my condition, is where I am now.

I hope that my children have developed an appreciation for the value of good health and the importance of support from family and friends. This is a lesson I would like to have learned long before I did, so fostering it for them is all the more important.

Disquiet, discomfort, illness, suffering, perseverance – as well as gratitude, commitment and love – are all very much part of our shared experience, this thing we call “life.” What better way to model these characteristics than to live with them each day?

I am a model. And I’ll do my little turn on the catwalk.

Robert Kendrick lives in Port Credit, Ont.

Thanks to all who followed my blog for the month of April, Parkinson’s Awareness month. I know you must feel deluged by the daily postings that was “My Blog – Greatest Hits Vol. 1” ! I’ll be back soon (but with much less frequency) with new material and look forward to hearing from you. Thanks! rk

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7 thoughts on “Modelling frailty”

  1. That is truly beautiful – hadn’t seen it before. Though I’d send you this – have the IT skills of a goldfish, so it should take you to a poem?
    https://graceisfreedom.wordpress.com/
    I’d also like to ask you if I can re-post this in Friends of Parkinson’s, Las Vegas….do some pro bono stuff for them. If you wanna touch base, email is: graceisfreedom@gmail.com
    Be well and keep up your fantaubould blogs 🙂
    Lisa

    Like

  2. It’s been a while since you submitted your essay to the Globe & Mail, but I really enjoyed it. Since the time that I was diagnosed, 11 years ago, until today, I have only read one other essay on PD in the Globe. (well I’m sure it’s possible that I missed one). Two essays! Doesn’t appear to be a popular topic, or are we just so unlucky to find ourselves with an illness that is that uncommon? Through the essay I was happy to discover your blog. In addition to your well-crafted posts and interesting topics I suppose that I find it comforting to read something from the fellow-afflicted. Thanks for sharing. And I would be happy to send on that other essay.

    Like

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