Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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speaking my truth to your power

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I believe caregiving is a women’s issue.  Breast cancer is a women’s issue too.  (Please accept this caveat – I know there are men who are caregivers and men who have breast cancer.  But this post is about women because I am a woman).

Thinking of Dr. Christine Ford reminded me of all the times I’ve been harassed, abused, ignored, oppressed and minimized throughout my entire life, all 50 years of it.  If you are a woman, I know that you are thinking of your darkness too. Yesterday, I wept in my car considering this:  I am Dr. Ford.  We are all Dr. Ford.

My invisibility began when I was a little girl and moved through nursing school, my first marriage and my workplace. I learned to be a good girl, to be nice, to behave and to not make any waves. When I became a mother, I became even less detectable. And when I was the mother of a child with a disability?  Even though my son has a visible disability, both he and I disappeared off the radar almost entirely.  I transformed into an invisible mom.  When I was diagnosed with breast cancer, I became one of the legions of women whose health concerns were ignored and dismissed.  I was just another middle-aged breast cancer patient; a mere shrug from the staff at the cancer hospital.

While I will never ever say that cancer is a gift, one thing that has happened this past year – with hard inner work and the help of a good therapist – I now have razor sharp clarity.  Cancer slaps you in the face with your own mortality.  I know for sure that my time on this Earth is limited.  I thought I had more time.  I’d better step up and focus on what’s important.

Here is my plea:  Do not stop speaking up.  If you are feeling hopeless, read Emma Gonzalez’s wisdom here.  Speak your truth to the power.  The power includes people who work in health care – a setting where there are huge unrecognized and unchecked power imbalances. Health care is not made up only of men.  There are women in power there too, lots of them.  As a mom and a patient, I’ve at times been labelled difficult, crazy and hysterical.  Cancer has allowed me at least this:  I don’t care what you think of me anymore.

Speak your truth. Don’t let the bastards get you down.  I’m with you.  Don’t stop, now more than ever.  Keep going.  Rise up.  The revolution begins at midnight.

training for all

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I recently asked this question at a webinar about patient-oriented research. It was in response to a comment that patients need training to work with researchers. But musing that collaborations are mutual, I was wondering why it was only the patients who need training. Wouldn’t the mutuality lend itself to training (delivered by the patients) for the researchers too?

My question about training researchers was met with nervous laughter. I don’t know if it was because the question made people uncomfortable or if the audience (of mostly researchers) was laughing at my question. Could I, the mom of a kid with a disability and a former cancer patient with a lowly undergrad degree in English, dare to think I could train someone with a PhD?

I hear about ‘training patients’ a lot. Another version of this is ‘coaching parents.’ This is about stuffing patients and families of all shapes and sizes into a rigid deficit-based model.  This model is almost always system and provider-centred.

I’d respectfully suggest that we all need training to understand each other. Patients need information about statistics and analyzing data. Researchers need information to understand a patient’s experience in the health care system. Researchers communicate through data and patients communicate through stories. Researchers need to understand stories and patients need to understand data. Our humanity is where we meet in the middle.

how to start a movement

I do still say yes to carefully chosen speaking engagements, despite my recent jaded post.  I’ll share my story when I feel an organization has demonstrated that their values are in alignment with mine.

One of those organizations is the Stollery Children’s Hospital.  I was their Family Centred Care Consultant from 2009 to 2011 and I was pleased to give a talk last night to their Patient and Family Centred Care Council to talk about the history and why a group of moms, including me, lobbied so hard for the hospital to start up a Council ten years ago.

One of the benefits about crafting a talk is that I get to reflect and revisit my own intentions.  I thought about why we began the Council, (to have a mechanism to formally introduce the family voice into the hospital), how we did it and what we did.  (I’ve written about some of what we did here and here and an article about their Family Talks program is here).

I realized while preparing my talk that how we created the Council and subsequent patient and family centred care initiatives was through first building a caring community amongst families, staff, physicians and leadership.   And that is because community engagement or patient centred care or whatever you want to call it –  is first and foremost a social movement.

Margaret Wheatley says it well:

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And the guy dancing with his shirt off in the video above?  The people willing to dance with their shirts off begin the movement, but it is the folks who join the dancing on the hill who continue it on, as has happened at the hospital long after I left.

I’m proud to have been a part of this movement so long ago.  My fear for other organizations is that engagement has become merely a volunteer coordination exercise to get butts around the boardroom table. I wring my hands because I can see that the intention of community engagement is being eroded by bureaucracy and professionalization.

My epiphany last night for folks looking to start or revitalize a movement: Harken back to your grassroots, to your community, to why you are doing what you are doing, because that’s where the heart of a movement really lives.

 

cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

don’t give yourself away

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I have been guilty of sharing my story with whoever asks me: media, conference organizers, foundations and health organizations.  I did this for many different reasons:  I was flattered to be asked; my voice had often by suppressed in clinical settings, so finally I had a chance to be heard; telling my story was healing; I felt pressure to speak up for those who couldn’t; I wanted to use my story to make change in the world; I wanted to inspire others to be more compassionate and kind; I wanted to be liked; I am not (that) scared of public speaking; I felt obliged to give back to the organization that was asking.  I wasn’t that choosy and I mostly said yes, yes and yes.  I was a cheap date.

No more. A wise friend taught me to be selective.  This is my call to action for other patients and caregivers who are asked to tell their story:  Be picky.  You are worth it.

I gave a talk last night to my friends at the Rare Disease Foundation about sharing your story in public forums.  My premise was:  you get asked to give a radio interview or a talk about your child’s rare disease.  How do you respond?

My suggestion is to first pause and think:  Why am I telling my story?  Is my intention for sharing my story in alignment with the intention of the person or organization asking to hear my story? Can they be trusted?  Have they shown me respect?

If these answers are no, then say no.

Is your spidey sense tingling?  Is your gut telling you something beyond just the regular anxiety that comes with speaking?

If these answers are yes, then say no.

Here’s an easy assessment:  is everybody else telling their story paid to be there and you are not?  Then for sure say no.  That’s just plain old inequity and that’s not fair.  Don’t do paid work for free.

Do you feel ready to tell the hard parts of your story in a constructive way?  I recently was asked to share my cancer story at a conference.  Upon reflection, I realized that I am still terribly angry about the way I was treated in the hospital.  I have not fully processed the medical and emotional trauma that went along with my experience.  It would not have been healthy for me to stand up before an audience and share my story in public, so I said no.

Consider if you are a family member: are you sharing your own story as a caregiver or your loved one’s story?  If it is your loved one’s story, is this your story to tell?

This pause to think about and assess requests is new for me.  I still believe it is only through stories that we will change this world.  I’ll continue to share on my blog, as this is a platform I can control.  I’m my own editor – my quotes won’t get taken out of context here and I am in charge of my own headlines and messaging.  I vow to find spaces that are safe to share my patient and family story.  I will work only with organizers, interviewers and audiences who recognize it is an honour to be given a glimpse into a patient or family’s life and who behave accordingly.

I sound jaded, but this is hard-fought wisdom.  Our stories are a version of ourselves.  They are a gift. Don’t give yourself away.

start here for meaningful engagement

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The original image is here on Karen Copeland’s Champions for Community Wellness website. Please use it, share it, but don’t alter it.  Give credit back to Karen’s site.

I keep hearing that researchers, patient engagement staff, clinicians and administrators are well-intentioned when they are tasked with including patients on their committees, in their conferences and with their research.

Let’s move past being well-intentioned to actually doing patient and family engagement right.  If you don’t evolve beyond well-intentioned, there is a chance you are causing harm to people with your misguided efforts.

I also hear of ‘patient engagement training’ that is offered to patients but I can tell you that the other group that need training are the staff who are actually trying to do the engaging.  And you know who should be facilitating this training in a paid work capacity?  The patients and families themselves.

I could share many resources, written by patients and families (like the Patients Included Charters), but let’s start with this infographic.

This tip sheet says family engagement, but swap in the word patient or person or anybody you say you want to engage in your work.  Think of these tips in every single interaction you have with these folks.

Use it as your lens to treat all people with respect in a meaningful way.

(Big credit to Karen Copeland for being open and sharing her creative talent to partner with me to create this work).