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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today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.

Twenty Days Last May

collage

I took one photo for every day of the twenty days I was in radiation treatment last May.  Here’s what happened when an artist friend generously taught me how to create a collage.  These are images from a time I’d rather forget.  But those twenty days are etched so deeply inside of me that my only way out is to weave that time into my very being.

This is why telling our stories – in whatever form – is so important.  By gathering our experience into a story, we make sense of random or traumatic events.  It is only then that we begin to heal.

moms + mental health

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this super cool pin is from http://www.noraborealis.com

I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons.  First, my thoughts are kind of a mess.  The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability.  The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.

(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters.  Their feelings are valued and significant too.  But their stories are different from my story.  Here goes…).

If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.

When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.

This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart.  I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work.  I also grieve for my older two children who have grown up and left the nest.  I miss them a lot. There is loss there too, but in a different way.

Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.

People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).

Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too.  Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible?   Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.

There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.

In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally.  Don’t be afraid of being still.  Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day.  This is okay because I’m perfectly imperfect too).

I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.