Hoist the Colours!

I know that I've probably mentioned this umpteen-zillion times by now, but in case you missed it, I'm a nurse.  I'm not the kind that looks after surgical patients or really sick children.  I don't hold people's hands as they leave this plane of existence and I'm not there to receive them when they arrive.  I do meet people on the worst day of their life, but I'm not the one resuscitating your loved one or assisting with life saving surgery.

I'm a Mental Health Nurse.  I work in a psychiatric Emergency department.

As we joke amongst ourselves, I specialize in drama, not trauma.

We're a rare breed, us Mental Health folk. Our brand of humour is dark, our tasks often darker.  We're ostracized.  People tend to shy away from us, even our own colleagues.  It's true: one of the fastest ways to kill a conversation is to mention you work in psychiatry.  We work where no one wants to go, with people that don't want to be there, in a world that wants to pretend that mental illness does not exist. 

I don't talk about the real details of my job here... or with my family, or my friends or anywhere outside work.  I do this for many reasons;  patient and staff confidentiality and protecting my family being the most obvious ones.  There's also a matter of respect for you the reader, who may or may not have had prior experience in my area of the hospital.  There's also a matter of respect for the ghosts that I carry.

And those ghosts are legion.

I navigate through this life by trying to keep work and home separate, but there is some inevitable leakage from time to time.  While there, I battle stereotypes and educate patients and families.  It wasn't that big of a surprise when I found myself in that role here.  There is a long list of "nursey things" that I habitually do in my home life, things that family and friends often find amusing, like obsessing over the integrity of the skin on my hands.  I've added reflective practice to that, especially when it comes to my advocacy. 

It's a tricky thing, keeping this life afloat.

There are days where the work sticks about my person like so many little post it notes.  The details of so many lives, so much anguish is a lot to absorb and meticulously record.  System stressors, politics, outside agencies, stigma... more post-its, more memories that I wish I didn't have.  There are times when I feel almost smothered.  There are times when I can almost feel the tiny pieces of paper flap in the wind as I walk around.  There are times where I manage to pick a bunch of them off and then one tiny detail will cover me all over again.

I have seen both the best and the worst that humanity has had to offer.  I wish I could say that the former outweighs the latter.  But, it doesn't.  At least not where I am.

This year in particular, both professionally and personally, has been full of challenges.  We've taken on water at several points.  I had to do something, as the stress was starting to cause me physical symptoms  (and aggravate a few more issues that I already had).  It was time to purge the bilges as it were, to celebrate life, to breathe a little fresh air into this house.

As is the way with these things, the oppourtunity came in the form of an unexpected gift.  In October I won a cake.  Not just any cake, but a custom cake of my choosing from Chrissy's Custom Cakes.  Since I had a birthday coming up in less than a month, I wanted to cash it in then.  This year is my 42nd, so one of geek extraction might assume that a Hitchhiker's Guide theme would be the obvious choice, but it didn't feel right.  I was talking it over with one of my colleagues, henceforth known as The Admiral, and she suggested we dress as pirates.

Perfect.

Time to assume one's own life metaphor.

I did just that, Friday night.  As so many were coming from work and daycare, not everyone wore pirate regalia;  those that did however, were spectacular.  We also had a couple Batmen, a naturalist and Darth Vader.  Quinn was our cabin boy and ran coats up to our bedroom while still having time to play with his friends.  The little ones played in our daycare of a living room and some of the adults had fun just hanging out with them.  It was free and organic and fun. 

The plan originally was to do a whole bunch of hors d'oeuvres and picky things, but on the morning of my actual birthday, I woke up and decided that it was too much work and in a fit of performance anxiety we ordered a 6 foot sub.  Best. Idea. Ever.

Folks brought additional nibbles, the wine flowed and Sean busied himself making grog for all that wanted.  Traditionally it is much stronger, but trust me, this recipe will still knock you on your six.

Captain Jen's Grog

2 oz Navy Rum
1 oz Lime Juice
4-5 oz hot water
1 TBLSP brown sugar
1 orange slice
1 stick of cinnamon

With the orange and the cinnamon, it's somewhat seasonal.  After the first sip it will warm you through to your soul. 

The cake arrived early and I was delighted with the results. 

I'm on a cake!  (Sorry for the terrible photo... I did mention the grog, right?)

Most were tired and headed out early, but The Admiral and I killed a few more bottles, reveled with some good music, reminisced, and got rid of a lot of work residue.  She departed for her own ship in the (not so) wee sma's.  The next day was pretty much a write off until the late afternoon when I found the energy to get ready for my other birthday treat:  front row tix to a benefit Gala concert featuring Jann Arden and Burton Cummings.  Both were fantastic.

Sometimes you have to just have to be a little silly, a little irreverent.  Whether it's building a fort or being a pirate for an evening, you have to cut a little loose now and again.  Life is for living, in all it's salty, swirly, bloody weirdness.  It's for eating and drinking and laughing and music and spending time with those you care about and those that care about you.  Sometimes you just have to hoist the colours and declare war on what oppresses you. 

...And always give no quarter.

The T-21 Blog Hop - November 2013

It's that time again...

As I said last month, it was time to bring back these monthly blog hops, to showcase some of the excellent writing taking place in the name of disability advocacy.

November 2013 is the very first "Autistic History Month" and is our theme here now.  However, posts about other disabilities and advocacy are always welcome. 

The script is live now and will continue to be open for the next three days.  It and all previous hops will continue to be archived here.  If you need further instructions, you can follow this link.

Submit your posts and read some excellent blogs.

These posts brought to you by:
  Add your post now!

It's Never "Just A..."

It never ceases to amaze me how many feel that this is actually open for discussion.

I, and countless other advocates for the Intellectually Disabled (including self-advocates) hear "it's just a..." in regards to each new thing that crops up, each new use of the word "retarded".  It's just a word.  It's just a lipstick.  It's just a shirt.  It's just a cat.

"Political correctness", "my rights", "free speech", historical etymology... it's almost fascinating to watch the entitled defense of this word, except the posturing makes me sick each and every time.

Here is the thing:  it doesn't matter who you are or who you know.
It doesn't matter what context you felt you were using it in.
It doesn't matter what poorly fabricated rationale you or your PR team comes up with to explain the use of this word.

Truth be told, you wouldn't defend yourself so hard if you didn't already know what you are doing is wrong.

Ultimately though, it's not about you, or your rights at all. 

It's not even about the Ann Coulters or the Jennifer Anistons or the Kat Von Ds or some comedian or shock jock DJ or any other sheltered celebrity or athlete that thinks they know better than the rest of us. It's not how you feel about this word, whether you are currently engaged in a scholarly debate or describing your life's latest little inconvenience. 

It's about others.

It's about the hundreds of thousands of people with Intellectual Disabilities and Developmental Delays, whether acquired congenitally or otherwise.  It's about people with Down syndrome, Autistics and people that are brain injured.  It's for those with aphasia and disabilities that affect communication. It's about their families and those that love them.

It's about people that are different than you. 

This word, this "R word", whether used as "Mentally Retarded", "retard(e)", "tard", "celebutard", "fucktard" or any other mash up (portmanteau) word ending in "-tard", has been used to denigrate. 

People.

It has been used by those in authority, by those in society to condemn people to a life of poverty.  To segregate.  To ridicule.  To sterilize involuntarily and subject to horrific experiments.  To abuse sexually, physically and emotionally.  To deny health care that many of us take for granted.  To isolate and institutionalize, to deny the most basic of rights...  including "free speech".  To bury in nameless graves by the thousands.  To be determined "life not worthy of life", loaded onto buses and killed, the bodies burned after being subjected to experiments.  To have the stolen organs and tissue to still be laboratory curiosities decades later.

This word, the one that you insist on using, yet claim means nothing to you?

It means EVERYTHING to us.

I mean "us" on this too...  Advocates of all stripes stand together on this.  This word means enough to us to unite and motivate us all to action, to write, to call, to petition, to picket.

This word?  You can call it our Jim Crow.  It is our Holocaust, both in reality and in metaphor.  This resistance is our Stonewall riots,  if that comparison makes it easier for you to understand.  Whether you do finally or not however, understand this:

It is not about you. 

It is about people like my son and their right to live in society;  to have an education; to live their life like any other.

This word embodies the removal of some of the most basic physiological and safety needs.  When you use this word or any of its permutations, when you exercise and flex your privilege, you participate actively in the removal of the rights of another.  You perpetuate the scorn, the hurt, the marginalization.

Those with disabilities are flavours of humanity; this world needs to accept this once and for all.  What keeps people with disabilities from leading their lives is not their "conditions".  It is society and the able bodied people in it.  It goes beyond a ramp, beyond an accessible door or parking, past service animals and assistive devices, deep into the rhetoric of our own language. 

Those who continue to use and defend this word are party to the atrocities committed in its name.

So it's never just a cat or a lipstick or a word or a matter of being polite.  It's not about being "too sensitive" or "politically correct" or "thinking that way" or intent or even "toughening up".  It's not about your rights to free speech.  It's about people.  People who live in a society that is ever ready to abuse and discard it's own citizens.

This has to stop.

Please.

Cups of Coffee

"Caw-fee fweeze?" (Coffee please?)

A small blue cup and a silver pot are thrust at me over and over as my daughter makes believe that she is making me coffee in the toy kitchen.  At my nod, she'll say "coming right up!" and then 'boil' the pot on the burner-like circle that makes bubbling noises.  She will then hand me both cup and pot with a cheerful "here you go!" (which proves she will never work at Tim Hortons).  I will sip pretend coffee for the seventy-fifth time in an hour (give or take) and watch the delight spread across her face as I finish my exuberant slurping with a loud "ahhhh".  Every time she giggles, then skips back to the kitchen and putters about a bit. Her hand noticeably trembled as she attempted to hang one of the plastic spoons over the little sink.  She focused intently on the spoon and the tiny hook for a few moments and eventually completed her task.  After a satisfied nod at her handywork, she whirls on her heel to ask "Caw-fee fweeze?"

This kitchen and a few other more advanced toys have been introduced into the twins' world in the last while.  It was originally purchased for Quinn a couple of years ago--he played with it incessantly.  At first he made us all manner of treats and concoctions in his kitchen.  It then became a restaurant and acting as a short order cook, he would make us lunch, usually pizzas and burgers. As time went on and he and it evolved, it became a laboratory for all manner of devious experiments.   Rare and deadly viruses were cured.  Potions were procured and super powers were endowed upon an unsuspecting populace.  It had fallen out of favour recently and has sat unused in our basement, entertaining only the dust and the occasional spider.  Now it lives in a corner of our living room, providing happiness for all.  It offers an oppourtunity for all three kids to play together... and apparently the creation of endless cups of coffee.   They say that the kitchen is the heart of any home;  right now a tupperware container full of slightly-wacky-out-of-scale-play food and a plastic kitchen is the heart of this one.

My children are growing and changing right before my eyes.  Long gone are the fragile bird-like creatures in the NICU that clung to life with a fierceness that is only matched by my love for them. My eldest meanwhile, has grown into a very wise-for-his-years little sir.  These changes only underline that nothing is permanent,  that life is forever tumbling forward. They are not the only ones that are aging either.  I am reminded of that every morning as I no longer spring out of bed, excited and energized for the new day. (Okay, I never did that, but you get the idea).  Instead, I fumble for my glasses and shuffle off to the bathroom, willing my stiff limbs into motion.  As I swallow the first of the day's Tylenol and blink over my (very real) coffee I am very aware that this coming birthday will start with a four and end with a two.  As the magic elixir starts to work, I'm reminded that I'm only halfway along this road and there is so much more awaiting me. 

I had a rare second cup this morning as I awaited the results from Wyatt's echocardiogram.  We found out what we already know;  that his oxygenation is up, his growth is up, his development has skyrocketed and that overall he's a different kid than he was before his surgery.  This week alone I've seen him hold his hand to his ear and say "hello?" into a 'phone', go up the stairs on all fours, learn to cough into his arm, offer up empathy to a sick friend, console each of his sibs, advocate his wants to each of them as well, use half a dozen words appropriately, count to three, and stand up unsupported for a few seconds.  He is on the cusp of so many fabulous things right now.  His cardiologist reinforced what we already knew;  his heart is "beautiful". So much so that the doctor doesn't want to see Wyatt for a year.  As I watch him reach up to the cupboards on the kitchen to pull out a pretend plate for his real toast, I smile and wonder what next year will bring.  Gone is the impression of a ticking time bomb in his chest.  Gone is the sword over our heads, gone is the lurking fear.  Instead there is just a boy, one who always offers his cup up for "clinks" (cheers) and wants to hold my hand during meals. 

It was over coffee that I read my eldest son's report card and marveled at how well he had done and how silly some of the comments seemed.  As a rule, these things are pretty stock: "...is gaining proficiency with adding and subtracting to 20", "can identify three states of matter" and "can identify living and non-living things" (oh please...).  One of these comments did stand out for me as I read through his mid-term;  it read "next steps:  Quinn is encouraged to experience life to the fullest, and enjoy each day as it comes."

What the...?

Is that like YOLO?
Is he depressed?
Bored?
Should we consider moving him to an enhanced class/school?
Is he still being bullied?

Sean attended the parent teacher meeting as it was at 9 am after a night shift, not historically a stellar time of day for me.   During the meeting he was told that Quinn is "a bright light" and almost without exception universally accepted and cherished in his class.  His classmates have advocated for him as much as he stands up for them.  After a little discussion including potential boredom, Sean was told that if we wanted, we could do the official "enhanced" testing and move him to the one school in the region (that is actually outside Brampton) that handles these things.  However, we have decided to keep him where he is. He seems to have successfully overcome his issues with his peers himself and is actively learning from them as much as they are from him.  Inclusion benefits everyone.  Even the brightest lights. 

Before my night shifts, I make a thermos mug full of coffee to take with me.  Usually I crack it open during report, but the other night I was barely keeping my eyes open as Sean gave me a lift to work.  As I sipped my brew, Sean told me how he and Quinn had been discussing vaccinations on the way home from school.  Quinn asked him about the difference between measles and mumps and Sean recounted a pretty good description, including the effects of measles during pregnancy and how mumps might make a man sterile.  I cringed as I heard that Quinn asked what that meant. Sean answered "it would affect his ability to father children". 

I was anticipating an awkward conversation with my son in the near future, but my fears were put aside a second later when I was told his response:

"Oh.  You mean it affects sperm production.  Okay then."

I wiped the dashboard off as best I could, but I'm still finding spewed droplets that I missed.

My life can easily be recounted by cups of coffee.  Physically it has allowed me to maintain the furious pace of my life. The loss of sleep. The soul crushing schedule.  Metaphorically it has allowed me to understand myself as one who changes the world around them.  It has been a good metaphor for this year of my advocacy.  Coffee has taken on a new role lately too, as its consumption has helped precipitate a few of the "attacks" I continue to have.  However, my daily medication and my "emergency" meds are helping while I await more clues as to what is happening to me.  For now, I can still have my cuppa.

My love affair with the bean is pretty much like my love affair with this life.  It can be savoured, drunk fast, provide comforting warmth or offer up a burst of frenic energy.  It can leave me shaking and strung out.  It can be enjoyed with friends and family.  It nourishes and soothes and gives me a piece of home while I wade through the anguish of strangers during my work day.  I can pass time, share fellowship, extend kindness and as it turns out, spend time with my children and marvel at the beautiful little humans that they are.

"Caw-fee fweeze?"

Yes darling.  I'll have mine with milk.