The holiday season is upon us but sadly, there are so many who have lost their joy, fallen into the struggle of the day to day stressors that test their resolve to keep going. But keep going they must. What other choice is there, really?
To tree or not to tree. For me, that is the question. A few weeks ago, I had that conversation with the young woman who helped me clean my home. I haven’t had a tree in several years, though I do dress the dining table and put out a few seasonal ‘pretties’ in the living room and in the TV room/office where I spend most of my time. I’ve decided to make the effort! We’re treeing!
As we approach 2024, full of hope and promise, I find myself reminded of what a major effort it is for so many of us to ‘just keep on going’; to be happy. Persons with orthopaedic disability, who are able to function with some degree of mobility, exhaust themselves physically, emotionally, mentally and spiritually each and every day, perhaps questioning the ‘why’ of their existence. Caregivers are struggling with their own demons of fatigue, frustration, fear, anger, and even resentment. They can’t give up. They can’t give in. In their minds, failure means defeat. How wrong they are!
Government systems of support must take a closer look at what the long term, real needs are for both those who require in-home help on a daily basis and those who provide it — doctors, nurses, health professionals generally, teachers, pastoral care workers. Respite for caregivers, often a parent or sibling, is paramount. They are the often ‘tapped out’ resource that never get enough acknowledgement or ongoing support.
From early on, if I was to be a happy person, accepting myself as I was would be necessary so that I could develop the gifts I may not otherwise possess had I not acknowledged that my ‘different’ness was nothing to be ashamed of, to wish away, or to ignore. In reality, ignoring it was never an option. I liken my differentness to a companion who will be with me forever; a part of everything I did, from rising in the morning to going to bed at night. My companion’s name is cerebral palsy Perhaps, in large measure, my companion would define my character, shaping the stuff of me that would ultimately be the best of me.
I had to accept that my life was going to be different --- not in a negative way, not special — just different. I certainly never wished to be someone else, though I did wish that I was more able in terms of mobility, as in being so, I’d have possibly been more readily included, particularly in the formative years when children are establishing bonds and social networks. In being more physically able, my career choices would have been expanded, but would things have gone differently? Who knows? There were and are always going to be things that I will never do by virtue of living with cerebral palsy. I don’t use the term ‘have’ when speaking of my ‘companion’.
Too often, people define happiness based on what others bring to them or share with them, whether it be the tangible or the intangible. Sitting back and waiting for happiness to come to us is wasteful of time and energy which could be better spent creating our own happiness and simultaneously spreading that happiness around us, to siblings, to friends, to colleagues, to a spouse/partner. Happiness flows out, flows around, then flows back after bumping about to touch others; a complete circle.
We who live with limitations to full participation in daily life learn ways to participate and create a unique happiness; this is, of course, contingent upon whether our intellect is intact and if we have even a limited awareness of our surroundings. It’s long been acknowledged that even the most profoundly disabled, in the absence of full cognition, can still experience happiness. Happiness is not something that should be weighed or measured, as what makes me happy may not make another happy. It should not be our job to ‘make’ another person happy – to position ourselves as a ‘happy maker’ has potential to be exhausting; ultimately, it may well destroy relationships.
Frequently, I have heard people say that they wish they were happier, which begs the question – what do they believe could or would make them happy, happier? Sadly, in this ‘stuff’ driven age, people assign a happiness quotient to the quantity of their accumulated ‘stuff’ – I was almost a victim of that thinking until I abandoned it years ago. Certainly, I enjoy an array of creature comforts, some by necessity to make my life easier as I age with a number of disabling conditions. I also enjoy a number of things that don’t fall within the necessities of life purview – fine scotch, fine foods, my books and music, pleasant décor; as with all things, never anything to excess. To coin an oft-used phrase – all good things in moderation. That has defined my life from the outset with regard to establishing my selfhood, my personhood – moderation.
As you chart your own course going into this new year and beyond, keep your eye on your own prize. Your happiness is inside you — take some time to find it and help it grow!
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell
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