cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.

you are enough

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Here’s Aaron, age 13, holding our sign at the Women’s March in Vancouver yesterday.  He is no stranger to protests – his dad took him to an anti-pipeline protest a couple of months ago.  We pretty much bring him with us wherever we go.

How do you explain to someone with Down syndrome about what a protest is?  We’ve been talking about injustices in the world with him for a very long time.  We show him articles in the paper.  He helps us collect petitions for campaigns.  We watched the US Presidential debates.  We sit on our bed and giggle at Saturday Night Live’s monologues.  In November, we had to explain our neighbour’s election results to him.  We talked politics with his older brother when he was in town last week from America.  (His brother’s short summary:  we are screwed).

Don’t think that Aaron doesn’t understand, or that we are confusing him.  He totally understands.  Last year during Canada’s election campaign, he turned to us and asked, “Why doesn’t Stephen Harper like brown people?”  Then, at a youth workshop for people with disabilities, in response to a talk about consent, he put his hand up and said, “Donald Trump didn’t have consent!”  No he didn’t my boy.

We had to explain the ‘F’ words on signs at yesterday’s march.  Also, that pussy word, which strikes me as being taken back by its rightful owners – women – as it should be. I told him it was another word for ladies, but only ladies can use it.

At the march, which was more like a slow walk,  we rounded the corner at West Georgia, and the crowd stopped in their tracks in front of the gleaming Trump Tower.  I had only driven past it before, and had never seen it up close. There were security guards standing in the windows, laughing at us.  A hush grew over the protesters.  Then someone raised their hand in the silence and extended their middle finger.  Then someone else did.  Young people, grandmas, everybody…fingers shot up in the air.

Aaron stood there, his eyes huge.  He knows what the middle finger means.  I leaned down to him, “do you want to give the middle finger to Trump?” “CAN I?” he said, not believing his luck – to be given permission for something so forbidden.  “Yes, but only for Trump – do you promise?   Nothing else.” I said.  He nodded and raised his short arm, his finger extended.  The lesson here?  There are times in life you have to say fuck you.  But save that fuck you only for special occasions.

People were at the march for all their own reasons:  to represent people who have been awfully and horribly marginalized, to protest climate change, to support love, to rev their feminist engines.  There were a lot of white liberal people – ourselves included – who have been woken up.  We were there for two reasons – to represent women who are caregivers who are invisible and uncounted.  And for our boy – he who belongs to a community that is systematically marginalized, ignored and discriminated against by real-life people and our own federal and provincial bureaucrats. IN CANADA.  Discrimination against people with differences is not just an American issue – let’s not be too smug about this in Canada.  I will continue to not shut up about this.

For some of us, it is easy to show up at a protest (never forget that for other people it is not so easy).  These people march and protest every day at their keyboards, at appointments, at kitchen tables.  But a march only heightens awareness – it does not actually create change.  That’s where the hard work comes in.  Be vigilant.  Speak up in the way that you can.  Organize.  Call out injustices.  Dare to be visible. To paraphrase our sparkly protest sign which paraphrases Brene Brown, Aaron is enough and you are enough too.

You take your kid with Down syndrome to a protest for this reason – to show him that he has a voice and that it is his job to stand up and use it.  Are we pushing him to be a self-advocate?  Perhaps.  But if Aaron ignores the evil in this world it will be at his own peril.

born this way

Aaron and Santa '15

Aaron is eyeing Santa at the Festival of Lights at the botanical garden.  Do you want to go talk to him, I ask Aaron, age 12, who is straddling the little kid/big kid world.  No, Aaron says, his eyes downcast.  But then he stands and watches Santa for a long time and eventually garners up his strength to have a chat with the big bearded man.

Afterwards, Santa shows Aaron his magic ring.  Make a wish, Santa says and Aaron immediately replies:  I wish for a wife.  A wife!  I don’t know what to do with that wish.  I know that Aaron’s wish for a wife is a wish for love and belonging.  I wish that for him too.

Ah, but there is no crystal ball with him, or with any other of my kids.  Would I have imagined ten years ago that one of my kids would be married, another would live with her boyfriend while my youngest son pines for a wife?  No, I had no concept of this future.  What will Aaron’s life look like in 10 years?  The new A&E series called Born this Way promises me a little glimpse into Aaron at age 22.

This new A&E show centres on 7 young adults with Down syndrome. We viewed the first episode with Aaron with great curiosity.  I kept half an eye on my boy’s response as he watched it – he was engaged, but he had no commentary.  I wonder, as I often do, what he was thinking.  I know that he grapples with his identity of Down syndrome just as the characters do in the TV show.

I want to go to Down syndrome school. he told me a few weeks ago.  It would be fun!   Then yesterday he said, I am the mayor of Down syndrome.   And before:  Dad, what is the future?  And, Mom, when you dream, do you dream about sushi?  I dream about meat.  It is impossible to pigeonhole him.  His behaviour is so classic for a 12 year old boy as he tries on different versions of himself to see what fits (our other three boys did the exact same thing as pre-teenagers).  One day Aaron is a rapper, the next day a music guy, another day Mr. Technology.  He is never fully Down syndrome, but it follows him like a shadow, in the shape of his face and the curve of his eye.

I have often thought it would be an interesting experience to have a camera follow us around for a few days.  I wonder if showing the footage to parents who have a new baby with Down syndrome would be comforting or terrifying to them.  Our life just is – it is so normal to us, I have no concept of what it would look like to other people (and maybe I don’t care anymore).  There’s the countdowns to get dressed in the mornings, the negotiation over portion size at breakfast, the obsessive choosing of footwear & water bottles, dates for sushi & movies, the constant string of bad knock knock jokes, the walks to the grocery store, the arguing over chores, the sound of Stampy playing Minecraft in the background, and the loud dance parties downstairs.

I know I’m watching Born this Way to remind myself that everything is going to be OK.  The scenes of these young adults struggling with friendships and love and independence just seem so damn normal to me.  I forget that much of the dialogue is subtitled or that a favourite activity seems to be bowling.   Maybe Down syndrome won’t be so scary or special to the general public who take the time to watch this show.

Perhaps this TV show will be a reminder that life is just life. For the one thing that I desperately want for Aaron (and us) is to be treated just as regular folks.  For life is beautiful and messy and sad and wonderful, no matter how many chromosomes you are carrying around.