How times change, fifty years ago I was celebrating my last Christmas as a patient in the Children’s Hospital and a year later I was attempting to catch a mud-eating goose from a pond in Stanley Park to have as my first Vancouver Christmas supper. There has been a lot of magic deer poop dust on the rooftops since then. But with Christmas behind us and, from what I keep hearing, a very shitty 2015 finished time to move on. I happen to share the sentiment so I will just say I am looking forward to a 2016 of better head spaces. I also realize I have to be responsible for my own well being so I need to start writing again. I have ignored my writing for the last couple of months allowing too much time to bottle things up. That’s not good for anybody.
After watching the recent coverage of the Truth and Reconciliation report I was reminded of why I write. It cathartic and cleansing to the system, not just the body. Memories and experiences can be just as disabling as any traumatic accident, one may be more visible but both require rehab and rehab is as cathartic as it is physical. My writing is one form of catharsis that helps me to clean out the emotional cupboard.
I recently began following the blog of Bronnie Ware, not only a talented entertainer but a lady with an interesting eclectic occupational background which includes a well documented history as a palliative care nurse. I really do find her work fascinating and I need some fascinating focus for 2016 so here I go. I am working my way around to see if her music reflects the wisdom of her words.
I need to get back to my roots for 2016 and start writing about positivity. To do that I need to find some motivation that is much more positive than I exposed myself to in 2105. I did some serious self reflection over the holiday period allowing me a revised perspective on the direction of my life.
The truth is (this is why it’s called Confessions of a Poster Child) deep down I am scared shitless. I am scared shitless over the slowly disappearing list of options that use to be there. I’m scared shitless over a body that is falling apart faster than a landmine cart in Afghanistan. I’m scared shitless because so few people want to hear this. We have all of these feel good programs that can generate some good PR but deep down people don’t really want to acknowledge the severity of it. Hell that means you may have to make some actual change because there is no pill for fear of moving forward.
I grew up in the 50’s in the day where Children’s Hospitals were very much like palliative care centres today. The concept of community integration, inclusion, rights, etc was pretty new. A lot of kids died in different Children’s Hospital around the country, that was a given at a time when there was no socialized healthcare. Medicine wasn’t nearly where it was today and those hospitals were home to many kids.
Interestingly enough though, as children we were introduced to concepts Bronnie talks about in her “Regrets” however they were presented in a way to overcome or avoid them. To quote it, “This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.’
As kids, growing up with disabilities, most of us were taught how NOT to get tied up in this kind of groupthink. We were taught not to let others dictate our life and that we had to stand up to fear otherwise all we would never achieve the level of independence so many of us were striving for. The other thing I have learnt over the years is very few people really want the answer to the question “How you doing”. I am now dealing with that netherworld of “you’re too depressing to talk with” due to the numerous causes I’m involved with and “well why didn’t you tell us, do you expect us to be mind readers”.
So many of my peers from the hospital days, kicked these stereotypical notion in the nuts quick enough and then spend our lives teaching society to pay attention to those with disabilities. We went on to full life’s of employment, families, community activities and what would be called normalcy. We didn’t fall into the “take care of” mentality that was put on so many people. We made sure that services and programs would be available to everyone and that access would never be an issue. There is a lot more availability of life to a wider range of the community than there was even 35 years ago. This would lead one to believe that a lifetime of good advocacy work had been successful.
Now, after almost 65 years of strain on the body, I am discovering a whole new world of access and program issues. There is no plan or strategy to deal with aging Canadians let alone seniors with disabilities. When I see what’s available to the tsunami of seniors with disabilities currently lapping the shores it scares the shit out of me. Since it has become impossible to discuss many of these concerns with people who know me (turns out so many of them don’t really want to acknowledge these things) I am taking my blog back to the land of the #AccessActivist. I am going to return to life as experienced in a wheelchair. Since I can’t raise this with people that know me you, my readers, will be my confessional for the year!
Just one mans’ opinion