Huddled around the coin phone in the basement of the Empress Hotel, listening to Linda’s voice about her roommates recent extreme PMS antics: this is how it was 20 years ago. The Empress’ Winter garden is gone as is the Inuit art, but the phones are still there. Walking home to sleep on the floor of an unfurnished or heated squat past the wall of St. Anne’s Academy, off to write letters and skip eating that day for an extra three minutes. Twenty years pass in hours, and days, not years.
Here I am today less than 3 streets from that squat and the concrete floor, ikea frame and banana boxes which made up ‘our’ bed when I flew to Manitoba and we drove through night at times, in the USA, to Victoria. And stopped along the way in unnamed town at 3:00 am to play on the swing set of a local school. We left weaving and dropped a tire off the road into the gravel, and wondered if it would ever come up, as we heard the gravel, like shotgun blasts, hitting the top of the inside of the engine hood. And then, when the fan belt broke over 1,400 miles later and just looked at each other and back in innocence to the mechanic who opened up the front hood and found gravel atop the fan cover, atop the battery, atop about everything conceivable.
I pledged then that I would be with her ‘forever’. And it is easy to believe in an idea that in some distant future that we would somehow manage to live on and on until deciding to go. We thought it was our choice, to die or not.
Things were going to be different for us than every other couple before us. Why wouldn’t we think that?
Until the end of the ‘things to come’ arrived for me: unwanted, unexpected, mundane after all.
Linda was there every day, in different ways, some had her leaving without moving out but in the remissions or the downturns, when others walked, she stayed. When the doctors left, when siblings never showed and parents peered in and ‘tut tut’ before passing on she stayed. We both stayed, two lives which seemed more and more out of control than united.
Now, people seem to want to take choices away from us. We were too young, too foolish, or whatever reason we had for not being able to be together (likely our inexperience with car mechanics). And now, Linda must be ‘saved’ from grieving, from seeing, she must be sheltered. And I must ‘learn to let go’, whatever that is to mean. The people who ‘help’ us the most do so over objections and do not want, even in jest, a modicum of our life.
I think we should be able to choose: that Linda should be able to choose like before, hunched over a phone, deciding whether or not she wants the minutes of conversation or just listening to each other breathe. The moon I see is the same moon she sees. We are separated by the experience of a cruel, hideous disease in a callous world, one which labels Health only in terms of ‘Wellness’. But seeing the same moon, we share in those hours, and days where so little else is connected. We create our own priorities, and accept or adapt our limitations. On the good days, our priorities synch, but those days she forgets I am like old stretched lace: fragile with beauty or ripped and torn depending on decisions. This is what makes our today’s.
That I blog at all is an execution of extreme focus and determination. I have not enough sustenance for over a month to sustain the body, and so I have lost control of temperature regulation. It is seven days of constant goosebumps and the agony of frostbite and the weakness of being unable to eat. And so, I write, when it is too hard to lift a drink, or try to eat the several bowls of a breakfast. And I weaken. And we all pretend otherwise, in every action or deed, I can get someone to get me a drink, I can’t ask anyone to care enough about me to assist me to drink, or eat. And so, without food, in a few hours of sleep, I am expected recovered, and so I slow down, realizing that my emotional support assists my physical well being. I can not be strong any longer, and need that glow knowing I am someone’s ‘special one.’
I got the body to the Terry Fox 5K and after that, it has been waiting, and weakening.
On the 31st the nominations for the Canadian blog awards close. The link to nominate is here. I am not sure how to use it, but Health, Personal, or LGBTQI would be a good choice. It is only for Canadians but that includes GirlwithCane, D Emerson Evans for personal and art, perhaps, and Steampunk Scholar under, um, Fucking Cool! (he just listed the anthology steampunk theme for next year, so get writing). I am sure I missed many others. This doesn’t determine who wins but who gets to at least PLAY. And mixes in new people reading new things, which is a good thing, ne?
Because we are Canadian and need four committees to draw a straight line, there is the Canadian Weblog Awards which again, close nominations on the 31st of October. Please submit your favorite Canadian blogs HERE. This group likes to RATE the blog, much like a teacher, on creative design and spelling. They only HAVE a ‘Health and Wellness’ link. Well, ‘almost dead’ is an ASPECT of wellness (called ‘unwell’ usually). I think if they had a ‘Palliative section, I would clean up. Because I can choose to post before passing out (which does happen now MANY times a day: maybe 10-40 times a day, with a few seizures, and 2 hours out of commission), or I can worry about spelling, and post twice a month.
So thanks for anyone who nominates new and interesting Canadian blogs. I spent some time looking at Wedding Photographers in my local city Victoria, as it is interesting to see the usual spots all tricked out in photos until unrecognizable. Also seeing the start to so many stories was of interest.
I don’t know the end to my story, but I know that I will keep, like Dr. hell, reporting (he had care problems too, repeatedly, with his ALS).
1 day ago