Saturday, October 29, 2011

The Today's (also blog award nomination deadline)

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).

8 comments:

Displaced said...

I love hearing the stories of your life with Linda. This trial you never could have imagined must have put horrific strain on the relationship.

Keep pinging into the universe Beth - I for one will keep pinging back.

Baba Yaga said...

Taking away choice... Over, and over. I'm not sure what this latest iteration is, but it sounds no better than any of those previous, and perhaps worse. I'm sorry it's so.

GirlWithTheCane said...

Beth...I want to come to BC and feed you.

How can they get away with this?

Sarah

Neil said...

OH, how I wish you could get the help you needed; especially early in the progression of your disease, when proper meds would have done some good.

I keep trying to send you energy with my positive thoughts. I hope it helps. :)

I also wish I could do more for you, dear lady.

Love and zen hugs,
Neil

JaneB said...

Choice threatens people who don't want to choose... or who want you to freely choose to agree with them completely.

I only have moderate depression/anxiety - and one of the reasons I am not totally open about it at work is that one of the few colleagues who DOES know says, every time I disagree with her "are you well? Are you taking your medication?" because clearly when I disagree it's because I'm mentally ill.

It must be ridiculously worse for you two, but I still try to listen and empathise. And wish I could be there to hold a cup.

Lene Andersen said...

Isn't it funny (not ha-ha, the other one) how people try to take over? You're sick, disabled, dying - someone else must make decisions for you because you couldn't possibly do it yourself.

It's ridiculous to assume that Linda can be sheltered from the grief of losing you. Would they even say that to a straight couple? And if they would, have they ever loved someone? And it's ridiculous to assume that you'd will yourself to die on someone else's schedule, just because they think you've been about this dying business long enough.

Keep living. Keep loving. Fuck 'em all.

SharonMV said...

Dear Beth,
You can learn to let go when you go. I hope you & Linda have the choice to keep on loving. As Linda says, there is no shelter from grief. I am glad that you still have such vivid memories of your early days in love and the choice you both made to be & stay together forever.

Things are a bit serious & difficult right now, but I will keep myself going and make things better. My heart is full of love, grief & wonder. Tonight, I send all the love to you. I still believe it is the strongest thing we humans have.

Sharon

Elizabeth McClung said...

Sharon: hope things improve both in the small and large ways.

Displaced: I think no one is ever ready for a drawn out illness - or going from steady good income with benefits to two years of no benefits and 18 months unemployments. So the financial makes the rest stressed until everything feels like it is falling apart as stuff actually does.

Thanks for pinging back

Baba Yaga: Just more people, and the realization that unless I defend Linda and her me, for the primary right to be first, then we will always be spending our energy toward others.

GirlwithCane: I would like people to as well. Because what a care plan is and what the workers do is quite different. And getting a regular worker and training them takes about a month, which is when they take them away. I could get help from the 20+ relatives I have, but since they didn't help their own mother, or even visit HER, I doubt any care from them.

Neil: You and me both. I think even if I had ALS, a recognized name, it would be the same as workers talk about going into places where there is pee everywhere, and someone hasn't been changed, showered or fed in days - and yet other workers have come every day.

Jane: Such a clear and apt example. The people who are the most wanting to push themselves up must keep reminding you and me how much lower we are to them - except the human right act says we aren't - but the social and workplace is a different experience altogether.

Lene: The worse is that people often have a 1 solution for all sort of different problems - 'put in a home' just means, 'don't make ME deal with it, have someone else' - well what happens when the people running a home don't want to deal with it, or want to make foolish decisions treating someone with a neuro-degenerative disease like someone with cancer, or old age?