Tuesday, September 4, 2012

The first Ever World Cerebral Palsy Day!

Hello friends!

Today is World Cerebral Palsy day. The first. Ever.

Disclaimer: I'm a bit crankier than normal today. Here's why: as a present for World Cerebral Palsy Day, my doctor gave me antibiotics and a urine test. For a kidney infection that I have apparently had...for weeks. The knife hot pain in my back at 4 am was enough to wake me up and go to hospital.

So while I wait for the next dose of pain meds, here's a little something for YOU for WCP Day.

Part of me wants to jump and down, the rest of me wants to stuff World CP Day.

Here's why: we have: Mental Health Day. Black History Month. Autism week. Eating disorder awareness week. We have 'spread the word to end the word' - the anti-'r' word campaign.

If there is a minority anywhere in our culture, we have a whole day on the freaking calendar dedicated to you and whatever affliction, non-WASP culture, environment, religion, belief or moray you subscribe to or come from.

Where is the 'Yay! You're *NOT* special!' day? Oh, right. Every other day is Yay! You're not special day! Yay, you're not different day!

See, here's the thing: I am so torn about this. Lots of people would say that they are proud of who they are and whatever condition, package or make-up they come in. And they should be. I am proud of who I am and who I will grow to be...

I am not proud to have CP. I am not proud to have something that makes me so obviously different from you. A birth defect is not a source of pride.

If you buy a television and it is defective, you take it to the store and they give you your money back and apologize to you. A store clerk says, "I'm sorry about that. Here. Let me get you another one".

They don't tell you to be proud of your broken television. There are no 'World Broken Television' days. They have a spot for them, though. It's called the dump. Where broken things go that no one wants.

This is not advocation for eugenics.

No one ever apologized to me: '...sorry that you are part of a culture that sees you as broken, and that this culture views broken things as disposable. Sorry that you are talked to with disdain and abject pity. Sorry: no matter how hard you try or what you accomplish it will never be good enough.'

     I seem to apologize an awful lot, without much to be sorry for.

No one ever apologized to my mother and father: '...sorry that you have to raise a daughter whom other people will treat as different, weird and unworthy. She will have special designations, labels and treatment her whole life. Sorry about what that will do to your marriage, your lives together as a couple and the strength of your family.

     What ever happened to that doctor? I bet he still has a license. I doubt I ever cross his mind.

No one ever apologized to my brother and sister: ...'sorry. Sorry that everything takes longer and is more time consuming. Sorry that you feel like your needs as kids, and maybe even adults are sometimes overlooked and/or forgotten because there is so much that your special sibling needs just to get through life.

     I hope that you get what you need now. 

In spite of never getting an apology or seeing the people I love most get the apologies they deserve so very much: I don't want one. I don't need one.

This is not a pity party.

If it's not an advocation for eugenics and it is not a pity party, then what is it?

It is an admonishment. It's a great big: f*** haters!

Things like Black History Month, Mental Health Awareness Day, Gay Pride, Spread the Word to End the Word exist because we, as a culture do not treat people as they deserve when they do not fit our tight little impossible, wheelchair-inaccessible-mentally/physically healthy-gender secure-"beautiful"- English speaking-heterosexual-intelligent-wealthy-non-smoking/drinking/addictions of any kind-you get the idea-mold.

They are salves. They are 'let's just forget all that and move on because we know better now' salves that stink. Putrefaction in a pretty package.

It is real. It is there. Even for those of you who do not see it. And especially for those going through it. Denying it does no good. Celebrating it underscores (at least for me) and highlights the "I am different from you in a way that no one wants to talk about without being uncomfortable".

So we accept it for what it is and we try as hard as we can to move forward, but not on. No matter what you do you can't move on. Moving on suggests leaving 'it' there and moving on without 'it'. You move forward and you drag it with you. Because you have to. You haven't a choice.

So we have one day. In some cases a month or a week. What are we to do the other 364 days, 11 months or 51 weeks every year?

We will do the same thing we always do. Wait for the next elevator....take a 45 minute detour because the subway stop is not accessible....be unemployed/under-employed. Bristle at empty compliments and praise exalting bravery for common-place things. Sometimes, we will cry, rage, and triumph. I will pretend not to know that you look at me and feel bad for me - whether you admit it or not. We will forgive your ignorance because you supposedly don't know better. Or you should.

Today, on World Cerebral Palsy Day, I choose to see it as moving forward.

But it's not pride.

I am not awesome because I have Cerebral Palsy. I am not awesome in spite of the fact that I live with Cerebral Palsy. I am awesome. Full stop.

Good-night, lovelies! xo

Monday, June 18, 2012

Frontline on the Shore

Bonjour, blog friends!
It is a steamy, smoggy city evening. I am writing, enjoying a quiet evening with DSH. But I've been thinking....

Usually, when I think...you get to read about it!

Last night, I was up late. Really, really late. Tossing and turning, thinking about eating toast and peanut butter for the sake of increased serotonin...hopefully leading to sleep. Instead, I did what I have been doing a lot of lately: watching documentaries. I watched seven or eight of them consecutively, ranging in subject: entymology and the agricultural importance of honeybees, colony collapse disorder  as a result of monocrops and agribusiness (in honeybees), neuroplasticity and the treatment of OCD, PTSD and schizophrenia....you get the idea.

All of this learnedness with the swipe of a library card. Oh, dear! I love, love, love (!) that you can type virtually any subject into a library search engine and get a few hundred call-number returns! There is something so satisfying about making a choice to watch something that will shape or change your understanding of the world and how you fit in it - and it's free!

I can't imagine choosing 'Jersey Shore' or 'Big Brother 29' over 'The Nature of Things' or PBS' 'Frontline'. Can you? Maybe you can. I don't know.

At any given time, there is a stack of 10 to 15 books on the bedside table that scream to be read as fast as my eyes can fly across the page. I use and abuse (using the term abuse with levity and as much deference as can be afforded!) the library to a point where it has become almost embarassing. I go to book sales, tag sales and thrift stores; read a chapter or two of a book (DSH will not book shop with me anymore), then, if I like it, put it on hold at the library. I have not paid for a book since 2007.

Sometimes, the librarians will save things that they know I would be interested in, or that they have read and want to hear my sass-mouthed opinion about (don't even get me started on all that Bella Swan garbage, all you Twi-hards!) - it's the best kind of provocation ever.  Other times, the library's digital collection will send me alerts of new, interesting things that have come out that I might like.

A few weeks ago, I got a 'you might like this' message from the library database. The library computer-bots thought that I would enjoy a documentary called 'How to Die in Oregon'. I agreed with the computer-bots and put it on hold.

Thus, the documentary-marathon at Casa Sunshine began...

You can watch the official HBO trailer here:

The video discusses the 'Death with Dignity' law passed in the state of Oregon in 1994. Later, I-1000 passed in Washington, is heavily covered.

I started to think about what I would want to happen in the event of a terminal diagnosis or catastrophic medical event where there was no hope for my long-term survival with compromised dignity and quality of life. I wonder do you out there, cyber friends, know what you would want?

Then I thought some more. Something like this requires some heavy thinking, I think.

Back to the library...where I found this:

This trailer is for a video called 'The Suicide Tourist', about a man with motor neuron disease (aka ALS or Lou Gherig's Disease) who travels to Zurich to die. He uses the services of Dignitas, where physician-assisted suicide is legal for people with terminal illness.

I felt most for his wife. It was clear she loved him, and accepted him the way that he was. I am not sure she would have been able to go on caring for him forever, but I got the sense that she would have tried - doggedly - because of the love she had for him. It was obvious, at least to me. She supported his decision as his own, with grace and humility, love and peace in the knowledge that her husband was doing what he thought best for himself.

It reminded me a lot of my relationship with DSH. I call him a Saint because he is one. He accepts my body and my limitations for what they are and would never want (I hope) for me to be different than I am. I strongly believe that he would rather have me in his life as a physically limited person than not at all. He accepts the barriers, inaccessibility and condescension of others for what it is. We snicker at the stupidness and ignorance of others.

But in the back of my mind, I wonder: at what point will all the laundry and the sickness and the helping and the burden of it being burdensome become so much for me that I just can't punish him anymore? No matter what he loves about my mind or my sass-mouth. Is that what Craig Ewart was thinking? I can empathize with that. I've been there. Done it. Blogged that.

I spoke with my dear friend Marguerite*, who is an active member of the 'Death with Dignity' movement in Canada after supporting her mother and sister through terminal illnesses. I was sure that this was something that I supported - if it is your body, it is your choice - and wanted to get involved.

You all know that I am Little Miss Super Volunteer...wherever I can lend a hand I always will. This seemed to make sense - I was sure that I wanted this kind of option available if ever I were to need it.

I needed more information. So I went where I always go. My friendly library branch.Too bad there aren't DVD's on how to be a mayor without alienating everyone. I know at least one person who could use that. Then again, he probably doesn't have a library card.

Then, I saw this:

This documentary follows a woman named Lisette. She is eighty, in good health and completely lucid. The doctor supporting her stated many times that she is healthy and has 10-15 years of excellent health, etc ahead of her.

She purchased pills to commit suicide overseas; and has purchased enough to kill herself two or three times over.

She repeats over and over that 'eighty years is long enough to live' and that she is 'bored'. She had the idea that she did not want to live longer than eighty years in her head and was going to die before then (she states this multiple times as well). She refused any kind of counselling or intervention that would concentrate effort on how to ease her boredom.

Your body, your choice. Right? Right. Here's the thing: I have a problem with this. 

The doctor himself states that he has reservations about supporting this suicide because of the message she is sending.

What is the message? Vanity? A weariness of life?  Apathy?

I feel like Lisette is a fulcrum: how I felt before seeing it and how I felt after. Death with Dignity legislations were hard-fought by people who were staring down death and did not want the embattled route. They were sick and wanted desperately to be alive: to meet grandbabies, teach their daughters the secret Christmas bar recipe. They did not go gently into that dark night. They raged against the dying of the light (Dylan Thomas).

In another 'Frontline', called 'Facing Death', we see a cancer paitent, knowing he has only days - if not hours to live - agreeing to another round of chemotherapy for myeloma, wanting a shot at even a miniscule chance to live. What would he say to Lisette?

You can watch the trailer for 'Facing Death', here:

What am I saying, here? I have no idea. Do you? Leave me a comment, if you do.

Either you support it fully - for everyone, even those whom you think may be misdirecting the cause, or you don't. Right? The question is, in polarizing issues such as these, is there ever a middle ground? Can I support people like Craig and Cody, yet dissent in cases of people like Lisette or am I making a judgement or a statement of worthiness in so doing?

DSH says he doesn't know what it means, if anything. Except, maybe, that a little 'Jersey Shore' might be a nice break from all of this information.

I wonder if you can get that at the Library....?

Good night, lovelies....xo

Sunday, January 1, 2012

Auld Lang Syne...

Hello, blog firends...

Greetings, and Happy 2012! Blessings and good wishes to all of you.

It has been a while, and I have been feeling the urge to blog. I have been sitting here, thinking, "do I write about this? If I put this out there for the world to read (and hopefully proffer comment upon), does it negate the good of what has happened?

I guess now would be a good time to explain what it is that I am talking about before my head explodes from all of this "what if'"-ing.

We have a friend across the street. He is an older man, from Ireland. I think he has some kind of chronic illness (of this I am also unsure). He has two sons (who are old enough to work) and a live in friend (who is also capable of working - these may or may not be important facts: I have yet to decide).

I have always sent over my baking run-offs (extras), and little nibbles of new recipes I'm working on. I believed I was being neighbourly - and we always have extra baking that I hate to see go bad. I know that things are tight for them. I know what that feels like, and I always appreciate the little gestures from the people in my life who love me and want to bring a bit of sunshine to a cloudy day.

Then, a few months ago, the oldest boy came to our house with a note. The note said that they were hungry and had no food. It asked if I could spare a loaf of bread.

I was stunned into silence.  I could not imagine how humbling an experience like that must be. I didn't know what to say. Except for, "of course.  We don't have any bread, but I will give you something to eat."

We took a shopping bag full of food and sundries, whispering hushedly on departure for home that we had been truly fortunate to be in a position to help a friend, no questions asked.

And then, it happened again.

And again.

And a few more times after that. Then, after the last time, I gave him the contact information for an intake worker at a city foodbank.

Each time, the oldest boy would come to my door and stand silent while I read another note. Each time, Dear, Sainted Husband would silently implore me to say no. I would direct DSH to fill a bag with whatever we could spare¸ and be thankful that we are able to spare it.

And he would continue to stand there silently; collect the food and leave without a word.

DSH and I would then fight: he would say that we should stop feeding them. He would tell me not to be so naive and trusting that it was coming from need and not convenience. I would argue that we are constantly trying to be good people and do what we believe is right and good. Why turn away from an opportunity to practice what we've been preaching?

Just before Christmas, DSH and I hosted a turkey dinner for a friend and her new partner. We ate only about a quarter of the turkey. After our guests had left, we packed up the turkey and all the leftover trimmings and brought them over to the neighbours across the street.

I'd felt very good about myself: spreading a little cheer during the holiday season.  They'd seemed excited to have a turkey dinner. I was happy to give it to them: I surely wasn't going to be able to eat it, and would be having yet another delicious dinner with all the trimmings in just a few short days.

Fast-forward to Thursday: another wordless note passed through the door. Silent collection and departure.

I talked to my Mom about this once before. And I can't help thinking that her comments were remarkably similar to those of DSH.

And now I wonder: is this what they mean about teaching people to fish? Or, should old acquaintance be forgot?

What do  you think, cyberlovlies?

Love to you...xo