once i ate a doughnut

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the doughnut in question

It was your shitty lifestyle that gave you cancer, and if you don’t change your shitty lifestyle, your cancer will recur.

This was the key message to a two-day workshop for cancer patients that I attended last week. Half way through day two, I stood up and walked out. If my time here on Earth is limited, I don’t need to spend my days being lectured to about this kind of sanctimonious crap.

Instead, I went for a long walk, met my husband for a lunch (I had a salad, just for the record, since I’m feeling defensive now), went for another long walk along the beautiful Vancouver seawall and met up with a dear friend for tea. This seemed like a healthier way to spend my time.

I signed up for the workshop for my Summer of Healing after my breast cancer diagnosis and treatment this year.  I thought: I’ll show up and be open to learning. I lasted a day and a half before the blaming, finger pointing and judgmental tone of the lectures from the ‘experts’ did me in.

The room was filled with people with cancer who had lived healthy lifestyles. I’d call this the classic west coast way of life – in this case, there were many fit, nutrition-conscious women who happened to have breast cancer. (And they were pretty pissed off about it, too). There were also three young people whose cancer had recurred.

The presenters did not understand their audience. I’m not sure how blaming people with cancer for getting cancer in the first place is helpful. Patients do not need more fodder to add to our own feelings of guilt.   We are also not stupid.  We know that being active and eating healthy is important.  No kidding.

Even if I smoked, drank, was obese, ate too many doughnuts, warmed up my food in plastic containers in the microwave, does this mean that I deserved to get cancer or that I am less deserving of care or compassion for my cancer?

The ‘it is your own fault you got sick’ mentality is what is feeding the repeal of Obamacare in the US with the BCRA Act. I follow this awful Act carefully on Twitter and feel deeply outraged for my American friends. We’d be so hooped if we lived just a few kilometers to the south in the US – my husband and I are both self-employed, we have a kid with a disability and now I have cancer.  We’d also be bankrupt if we didn’t have proper insurance coverage.

This patient-blaming attitude is pervasive everywhere, including in Canada. (Although I’m extremely grateful for our Medicare, which is our quasi-universal health care coverage for hospital and physician office care. This means I don’t have to pay for my medical care because I got sick).

“Maybe you will live a healthier lifestyle afterwards,” a friend said to me on the phone, not so helpfully, when I was first diagnosed. I was lying on the couch recovering from surgery. This implied blame is thankfully mostly unspoken, but was the overt attitude at this ‘cancer care’ workshop.

The truth: cancer is a combination of genetics, bad luck, rogue cells – and yes, environment and lifestyle are factors too. But there is no one cause of all cancers – cancer is much more insidious than that. Our own cells turn feral on us for all sorts of reasons. If researchers knew what that reason really was, we would already have a cure for cancer. You can’t prevent cancer by doing any one thing.  (Read about a recent study from John Hopkins about the topic of risk factors here).

The real reason I think people are blamed for getting cancer is because we are all terrified of becoming vulnerable, needing help and dying. We think that we can do all sorts of things to avoid death.  Alas, there is a randomness to living that is out of our control. There was a 1 in 700 chance I’d have a kid with Down syndrome, but I had him anyhow. (Many feel my son’s birth could have been prevented, but that’s for another blog post). The current stat is that 1 in 9 women in Canada get breast cancer. I happen to be one of those women.

I know I have lived through many women’s biggest fear. Once you start with the boob-squishing mammograms, the idea that you might have breast cancer begins floating around in your mind. I thought I was immune from breast cancer because I breastfed all my children. That was an arrogant, naïve and mistaken notion.

I’m not suggesting you don’t live a healthy life, whatever that means to you. That would just be silly. But…stop the patient blaming when people do get sick. None of us are going to escape this world without acquiring some sort of illness and eventually dying. This is part of life.

My healthy lifestyle changes since getting cancer include: holding those who showed up for me close, more hugging, going to therapy to finally figure out how to love myself, meandering on long walks, marvelling at sunsets and remembering to breathe.  I still eat cheese, lie around in my bed watching Netflix and enjoy a tall glass of cider. Everything in moderation, folks. My best advice is to go forth and live your life under the guise of joy and not fear.

Cancer workshop organizers, shaming patients is not going to lead to behaviour change. (See this great post by Carolyn Thomas about ‘non-compliant’ patients).  Being perfect does not prevent cancer.  Try treating those who are suffering with respect and compassion. Suspend your pious judgment and meet people where they are at.  People who have cancer need your help (not your disdain) to learn how to heal, inside and out.

health squawk

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Rabble-rousing by truth-telling

Health Squawk is my new Instagram account where I share anecdotes about my travels in the health care system.  This is about unveiling the secrets of health care, which includes both the inspirational and the profane.

I believe in using our voices to change the world. The way patients and caregivers do this is by sharing our stories and insights. I dabble in topics that include having breast cancer and being the mom of a kid with a disability.

Do you have a Health Squawk to share?  A short quote illustrating something ridiculous or humorous in health care?  Email me at:  sue@birdcommunications.ca.

ps:  You are most welcome to share my images, but please do so with credit and a link back to this blog.

I am a Patient & I have had an Experience

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My treatment is over now and I am running out of excuses for naps, begging off obligations and almond croissants.  I am achingly exhausted earlier and earlier every day and I have been told this fatigue will continue for several weeks. This cancer treatment is killing my social life.

As my oncologist says, two minutes of radiation is like spending the day in the hot sun, so I’m lurching around with a version of constant sunstroke.  My boob is super itchy which is an annoyance but not debilitating. I asked the Radiation Therapists, why do some people get burned and itchy and some do not and they did not know.  I have no idea what research is going on over at that fancy Research Building across the street, but apparently it is not research on side effects like itchy boobs.

I promised not to be complain because I did not need chemo and I did not need a mastectomy and for those reasons I am lucky.  Or rather, I am a lucky unlucky person because I still have breast cancer and being diagnosed with cancer has really messed me up, mostly in my mind.  I hope this blog isn’t negative.  I hope I don’t sound like a victim. I’m just trying to be a real person.  My experience having breast cancer has been surprisingly complicated and not all pink ribbons and teddy bears.  It has shaken me to my core.

Two weeks ago, I had a voice mail message from a manager at the cancer agency.  Apparently someone had forwarded my blog and told him to call me to talk about my ‘experience.’  I arranged to meet with him and Mike and I showed up to his windowless office before one of my daily radiation treatments.

He was a pleasant fellow, new to his job.  It was clear I had been labeled a ‘complaint,’ when in fact I had not contacted them with a complaint at all.  I was only writing about my own personal experience for my own blog.  True, my blog is public, but it feels creepy that my blog is being monitored in this way.  I felt reported.  We chatted about the patient experience in general and I emphasized that I hadn’t complained, but that I did have some ideas for improvement.  He wrote down a few things and that was that.

Later, I asked the people who had forwarded my blog for an in-person meeting with them and suggested that maybe they could have asked me if I wanted to have a manager  contact me.  I would have liked some choice in the matter, as opposed to someone assuming I wanted a call.  I got the ultimate brush-off message back and my request for a meeting was totally ignored.

Feeling discouraged, I then followed up, sending on a couple of general videos about patient experience (this and this), asking to meet with the administrator in charge of Patient Experience.  I am a Patient and I have had an Experience after all.  I sent that email ten days ago and have not heard back. I can take a hint.

It has always puzzled me why patients with feedback are silenced and pushed away.  Don’t professionals learn through challenging situations?  Aren’t ‘complaints’ just constructive feedback that can be used to improve care and service?  Am I the most naïve person on earth?

With all this ignoring of my requests and emails, I’ve realized that I’ve been labeled as ‘difficult’ – maybe even ‘crazy’ or ‘hysterical’ (terms I’ve heard used by staff for families – usually mothers – at children’s hospitals).  This is humiliating.  As I told the manager, I want to help. Patients have good ideas and aren’t actually stupid.  But I do not have any credibility at this cancer place beyond being ‘only’ a patient.  To administrators, patients are a generic cluster of diagnoses, not real people with ideas or opinions.  We are all a bunch of nobodies.

It was silly, or maybe arrogant, for me to think they want my help.  When feedback from patients is solicited by hospitals, through tools like surveys and comment cards, it is okay.  But when patients approach them with feedback that is not overtly asked for, we are shut down, brushed aside, minimized, gotten rid of, seen as a problem that needs to be handled.  I see this now.  We are supposed to shut up and be grateful for care.  Me and my itchy boob will zip it for now and stop rabble-rousing with the organization (and please know that I am grateful for the care, and brought in nice chocolates for the Radiation Therapists to my last appointment) and move forward.

Maybe one day an authentic chance to give feedback will be offered to me.  I was given a patient satisfaction survey to fill out a few days ago, but it had only a tiny spot to write ‘one or two ideas for improvement.’  I dutifully scribbled in a couple of thoughts – about orientation and waiting rooms – but I actually have about 100 ideas for improvement, but there was no room for them on the page.  No matter.

Currently, I am sick of the whole health care system.  Now is the time for me to rest, begin healing and scratch around to find a little bit of peace in my heart.  There are books to read, walks to be taken, music to be listened to and, most important of all, people to love.  Thank you to all who have shown up for me.  xo.

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.

what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.

so much lemonade

See, when it starts to fall apart
Man, it really falls apart.
-The Tragically Hip

Today I’m digging around for all the books that give me comfort my time of need:  Anne Lamott’s Travelling Mercies, Elizabeth Lesser’s Broken Open.  I ate some carbs.  I went for a crunching walk on this sunny fall day.  This helped too.

I’m recovering from yesterday’s crying hangover.  This morning I painstakingly typed out a letter of resignation from my paid work position, after a particularly hard meeting with my boss.  I even watched this deodorant commercial for inspiration, but it didn’t help me one bit.

I’m moving back exclusively into the freelance-consulting world.  In hockey terms, I’ll be a free agent as of November 4.  There was a slippery slope starting with my husband leaving his working-from-home position last March for a ‘must show up in person’ one, and my subsequent leave of absence this summer.  This led to the difficult decision that I need to transition back to working from home to be a support for our youngest son, who happens to have a disability and who happens to be 13, too old for childcare, not able to get special needs childcare funding, not able to be left alone, in a school district that has significantly shortened teaching hours for kids with disabilities (pick up at 2:30 pm because they don’t have funding for Educational Assistants?  REALLY CHRISTIE CLARK?).  Well, I’ve ranted about all this crap before.  My boy needs me and that’s enough.

In my resignation letter, I added this punch:

The reason for my resignation is that I require that my work be flexible and based from home to support my youngest son. This is directly due to the lack of family support that exists in British Columbia for parents of children with disabilities.

This made me feel marginally better, although I know that nobody cares. It really bothers me that my choice to be in the paid workforce has been taken from me.  However, this also makes me acutely aware of my own privilege. I am in a relationship where my partner makes a decent income, so I have the option to move back into freelancing.  What of people who don’t have this luxury?  This is how the government forces people who have disabilities or those who are caring for people with disabilities into poverty.  How is this ok?  This is not ok.  What am I going to do about it?  I don’t know.  I guess I will have some time on my hands to figure that out.

But for a while, I am going to hang up my supermom cape.  Someone else can take over changing the world because that turned out to be rather short-lived this time around. I still hang tightly onto the belief that we will change the health care world only through love and compassion.

I’m working on a long-awaited book project.  I’m slowly getting more known in BC health conference circles, and have a number of scheduled speaking engagements.  I might eat more sushi and take more baths.  Importantly, I’ll pick my boy up from school, and we will stop at Tim’s by the high school for iced caps, where the ladies remember his order.  He’ll talk to me about his day as we zoom back home up the mountain before he catches himself chatting with his mother and announces to himself:  SILENCE AARON.  We will catch up on Born This Way episodes on PVR and eat popcorn in bed while we wait for his dad to return from his work. We’ll putter around in the kitchen, listening to soul music and preparing supper, where he has been crowned my capable sous chef.

The system has thrown a number of hard, rotten lemons at my head and I’m bruised and worn. But from that, I’m trying to make some pretty sweet lemonade.  I believe with all my heart that our best revenge for daring to have a kid with a disability is to orchestrate a happy, well-lived life – systems and society and governments be damned.  Love to all the families out there struggling to gain the same balance.  Know that you are not alone.

you must go on

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Today I left my son’s doctor’s appointment under the crushing weight of disappointment.  This was a follow up appointment to discuss a number of referrals for Aaron.  Here are the various statuses:

  1. On a wait list for an indeterminable amount of time.
  2. Another referral is ‘being reviewed’ – he isn’t even on the wait list yet.  (A pre-wait list?). Once he hits the list (if ever), the wait list is many months long.
  3. One service is $190/hour.  Another is $100/hour.  Yet another is $85/hour.
  4. The recommendations from the health care professional report won’t be funded by the school.
  5. We can’t get him into a publicly funded service because the ministry won’t open a file for us.
  6. Our doctor recommended we take the private, expensive options because the public system is of such low quality.

I slunk out of that appointment, my head hung low, my heart heavy.  Aaron was excited about a promised Dairy Queen lunch, so I stood taller, put a smile on my face and did my best to be a good mom.

I’m feeling raw and uncensored.  In response to this Maclean’s article (sure enough, alluding to the ‘risk’ of Down syndrome, a chromosomal ‘abnormality’), I tweeted:  Stop saying this shit.  I’ve been revisiting Aaron’s experience with inclusion (or lack thereof) when we were interviewed for this Globe and Mail article.  Frankly, those memories of Grade 1 bullies, dried up birthday party invites and general exclusion have been a real bummer.

The school informs me that his new special ed program doesn’t begin until mid-September, drop off time is 9 am (except for Wednesdays when it is 9:30 am) and pick up is 2:25 pm.   I’m not sure how I’m supposed to work – from 10 am to 1:45 pm?  I asked the teacher what other parents did before/after school (since our kids are over 12 and not eligible for daycare – not like we were eligible for that anyhow since the wait list for supported childcare is so long) and she told me:  well, most of the families have autism funding.  Well, sadly my kid has the wrong diagnosis for any sort of funding in this province.  Another fail.

NONE of this is Aaron’s fault.  We might blame the system, but the system is made up of people – living, breathing people – who make decisions that affect the real lives of families. I work inside that system.  This first hand experience makes me feel full of shame, for I am the system too.   I catch myself inching towards the mean and bitter mom category when I remember this:

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Oh right.  It is September 1.

After the doctor’s, Aaron hung out with a lovely young university student who was taking him to play basketball, so I went for sushi.  I went for a walk.  I sat in the library. We might not have respite funding, and we can hardly afford this, but dammit, I’m pulling out all of my self-care strategies and feel a bit better, surrounded by books and pounding out all my troubles into my keyboard.

If you are having a hard month too, my friends, you are not alone.  We must solider on, as Samuel Beckett says:

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In the quiet of the library, I remember last Saturday night.  Our next door neighbour invited me to a yoga class on her terrace under the setting sun. Afterwards she and her husband hosted a party, and Aaron and my husband wandered across the hall, bearing antipasto.  Aaron sat on the couch and patiently listened to the adult talk, for he was the only kid there.  One of our neighbours, new to Canada, said to him:  I have a present for you…and gave him a bear whistle.  Take this with you, she whispered.  If you see a bear, or if anybody is a bully to you, blow it loud.  Aaron nodded, cared for by this sweet sentiment.

Later, Nina Simone played on the stereo.  Our hosts got up to dance, their arms comfortably entwined around each other after 40 years of marriage.  Aaron watched them carefully, and then another neighbour asked him to dance, and then another.  He accepted, shyly.  I’ll never forget how pleased he looked, dancing with the ladies in that little living room.  This memory is like magic.  If I close my eyes and remember, it erases all the wait lists, our depleting money, the lack of access …it is all gone.  It is only my youngest boy slowly dancing with a kind lady, a slow smile spreading across his face, knowing full in his heart that he belongs, right here and right now.  He’s conquered the world with his very being, and we are both at once at peace.

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