my small comfort list

mycanceremotions

I’m drifting away from my breast cancer diagnosis and treatment from two years ago. Time gives me the ability to reflect, although I can easily be thrown back into the well of despair that epitomized that dark time in my life.

Sometimes I get messages from other women who have been diagnosed with breast cancer. I wish I could tell them: do this one thing and you will feel better. Alas, I have no one thing and no easy solutions. Healing is highly individual and one size sadly does not fit all.

I tried many things to calm the f*ck down. This is a list of the things I attempted over the past two years to make myself feel better. If you are going through a dark time for whatever reason, you will make your own list. It won’t look like mine. I tried a lot of things on for size. Maybe one of these ideas will give a wee bit of comfort, even for a little while as you find your own way.

1. Walks Outside
I promised my daughter that I’d walk every day. At first I begrudgingly kept that promise, then I became obsessed with getting my steps, but now I’ve settled down and look forward to my daily walks. I actually allow myself to enjoy the combination of fresh air, nature, movement and time to myself.

2. Mental Health Therapy
I tried the public mental health system first, but I was only was assigned four appointments at the Cancer Agency. Then I had to find my own private therapist. Asking around for someone who understood cancer stuff helped. Anywhere that advertises cancer supportive care would fit that bill, like Callanish or Inspire Health in Vancouver, or Wellspring elsewhere in Canada.  Do not be surprised like I was that our public system does not offer these services.  Publicly funded oncology care is medical, not holistic.

3. Small Comforts
I started scratching around for small comforts, like stopping for a coffee before oncology appointments and going for cheap sushi and to the bookstore afterwards as a little gift to myself. This helped me endure rude receptionists and cold oncologists if I knew I was going to treat myself well afterwards even if others did not.

4. Cancer Retreat
This is about finding ‘peer support’ or what I call friendships with others going through the same thing. I wrote about my experience at a cancer retreat here. Many retreats have subsidies for registrations to help you access them and if you can manage to take some time away. It is an investment in you.

5. Meditation
I’m no meditation guru, but I went to a few classes run by the Calm Monkey and picked up some basic tips. I used meditation techniques when I was under the radiation machine, waiting for the doctor to come into the treatment room or being squished in a mammogram device. Breathing and counting helped me calm down, even a little bit. I think it gave me back some control. Here is a quick and fast version that I watch in the mornings to start my day.

6. Music
When I drove to oncology appointments, I played the Tragically Hip really really loud on the car stereo. Yeah, Gord Downie had cancer and there is something about his heartfelt pre-cancer lyrics that speak to me. Courage, my word, it didn’t come, it doesn’t matter Courage, it couldn’t come at a worse time. Find your own Gord Downie (or borrow him.  He’s great).

7. Water
I was lucky enough to go snorkeling after my treatment. Sometimes when I can’t fall asleep at night, I think of that feeling of floating with the fishes. To re-enact that feeling, I tried out a few sessions at the Float House.

8. Love of Good People
I struggle to feel myself worthy of love. (Long story). So I purposely lean into hugs from people who love me unconditionally and not to push them away. This means embracing love from my husband and children, taking phone calls from my open-hearted, non-advice-giving friends who make space for the listening and I try to fully accept kind words from others. (This means I had to also get rid of the love of bad people who hurt me, which wasn’t exactly comforting but it was a necessary evil).

9. Podcasts
I listen to podcasts on my walks. Mostly the Good Life Project and Everything Happens. There’s a podcast out there for you if you are like me and struggle with finishing an entire book.

10. Mindfulness
I like to watch this video. I also sometimes think: ‘stay in the moment, this is all you have,’ so I don’t zoom ahead with fret about the future.

11. Purposely Seeking Joy
Yeah, I’m one of those people who push away joy too. I have to purposely seek it out and pause to enjoy it (see #10). Joy mostly resides in the little moments, like my son’s laugh or the birds chirping in the tree, which are always there for me if I just pause to pay attention.

12. Writing
Obviously I wrote a lot in all my various states on this blog. I also took a poetry class. This was healing for me, especially if I found out that my words were helpful to other people. You don’t have to share or publish your writing for it to be useful to you.

13. Reading
I kept a list of books that helped me. The Emperor of all Maladies helped me understand the stupid cancer. Audre Lorde’s work about speaking up was very important to me. Like music, find writers who speak to you.

14. Quotes
If I didn’t have the energy to read a whole book, I’d glom onto quotes from podcasts or Instagram or Twitter, like those from dearly missed @ninariggs, @cultperfectmoms and @adamslisa.

15. Art
I’m no visual artist, but my friend Lelainia kindly spent the day with me teaching me how to collage my photos from my radiation therapy days. This was extremely healing for me. In lieu of actually creating art, looking at art helps too, which is why bookstores, art galleries and museums are some of my ‘calm the f*ck down’ places to go.

16. Distraction
I was mostly too upset to be distracted. The geographical cure helps if you can swing it – even short road trip or a 20 minute ferry ride to Bowen Island was comforting. My friends kindly distracted me for taking me out for nice meals or meeting me for a drink too. Accept kind distractions.

17. Mindless Entertainment
Related to distraction is mindless entertainment. Here’s where I actually take a bubble bath and read an US magazine and enjoy it. (Note that bubble baths are buried in about 50 other things I do and bubble baths are not the only solution as the self-care movement wants you to think). Movies, Netflix (Ali Wong!) and plays work this way too. I can only watch comedies now, go figure. It is important for me to laugh.

18. Medication
Yeah, I’ll be honest here. If I’m really freaking out, I’ll take a prescribed Ativan. There’s nothing wrong with asking your physician for medicinal help. I also shamelessly like a glass (or two) of a full-bodied red wine. Marijuana has never done it for me, but I know of others who use it and bonus, it is legal now in Canada!

19. Being OK with Feeling Shitty
In the end, sometimes life is just shitty. My therapist said: maybe it is okay to feel sad or upset or angry. I used to shove those hard emotions away. Now I can say: this is okay. It will pass. I won’t always feel this way.

The wise Kimmy Schmidt said: “Do you think you can handle this for 10 more seconds? I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you have to do is take it 10 seconds at a time.”

Get through the first ten seconds and then the second…sometimes putting your head down and getting through one step at a time is all you can do. Sometimes you have to lie down and take a rest. Mostly, cut yourself some slack.

To the women who have approached me who are in their own dark time, I want to say this: accumulate your own small comforts. You are deserving of finding peace in your hearts, to temper the suffering life offers us, even for a few moments.

Ps: I’ve written about the whole self-care/self-compassion thing here: Leaning Out and Beyond Bubble Baths.

won’t you be my neighbor?

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I handed my ticket to the usher at the movie theatre. He glanced at it, looked at me and said, “Won’t you be my neighbour?” I smiled at him and said, “Why yes I will!” We exchanged grins in the moment before I disappeared into the dark theatre. It was a brief spark of connection at the end of a long day.

My eldest two kids will tell you that they didn’t have a television in the 1990’s when they were little. They had a gap in their media references when they went to school, until I introduced DVDs into their lives so they could catch up. They mostly watched Sesame Street and Blues Clues, but Mr. Rogers was on their radar. I didn’t really understand the soft-spoken man in the cardigan. After watching Won’t You Be My Neighbor? I have had a 90 minute glimpse into his wisdom.

This is not a movie review; this is only my own thoughts about the relevance of Mr. Rogers’ philosophy in today’s messed up, beautiful world. While the news and Twitter remind me how messed up we are, I look outside and see the trees, blue sky and mountains.  The Mr. Rogers movie reminded me that the world is beautiful too.

I wept at the sweet innocence of Won’t You Be My Neighbor. There was a lot of sniffling in the theatre, so I know I wasn’t the only one.  The main message was: you are loved exactly as you are. This is what Mr. Rogers repeated over and over to children throughout the decades. If you are loved exactly as you are, this means love is not withdrawn when you stumble or aren’t perfect. This is a powerful message to impart to children. I think of how much pain in this world could have been avoided if we all felt loved and attached.

Mr. Rogers was not himself perfect or without his critics. There are those who think that telling each and every child that they are special has created generations of entitled adults. I call baloney on that. Every child is special and so every adult is too. You shouldn’t have to ‘work hard’ to prove your worth. You are worthy simply because you are human. Part of Mr. Rogers’ background taught him that everybody is loved by God, no matter what.  The no matter what part is really important.

Brene Brown has written extensively about feeling worthy. Dr. Robert Maunder is in the midst of releasing a compelling set of stories called The Damage I Am about a man struggling with his own worth because of childhood trauma. The podcast Other People’s Problems often has episodes echoing the same theme.

As Mr. Rogers says: “Love or the lack of love is the root of everything.”

Towards the end of the film, there is a scene where Mr. Rogers meets a young man named Jeffrey Erlanger, who is quadriplegic and uses a wheelchair. Having my own son with a disability, I sat up and paid careful attention. Just watch Mr. Rogers’ conversation with Jeffrey.

Notice how Fred Rogers carefully listens to Jeffrey. He acknowledges Jeffrey above his wheelchair and praises him for his extensive knowledge of his medical conditions. Fred brings up the notion of being blue and confesses to feeling blue when he was a boy.  We learn earlier in the film that Mr. Rogers was often sick as a child.  Perhaps this is the foundation of his empathy.  Jeffrey and Mr. Rogers sing the song “It’s You I Like” together.

I wonder if I’ve imparted unconditional love to my own son with a disability.  If we’ve had the right balance of therapy and acceptance to ensure he doesn’t believe himself broken and for him to believe that he is loved exactly as he is.

I work on telling and showing all my children that they are loved – no matter what – every single day. Some days are better than others. On the bad days, my own personal pain that I’ve been carrying around for a very long time gets in the way. So the next day I get up and try again.

I believe that imparting both the knowledge and feeling to children that they are loved is the most important work of a parent.  People and governments who block children from this love are the purest kind of evil.  This need to believe in our hearts that we are worthy continues into adulthood too.

The movie ends powerfully with Mr. Rogers asking for ten seconds of silence to think of those who have encouraged us to become who we are today.  I invite you to close your eyes and think of your special person too.  (For me, this is my grandma).

Today, take a break from CNN and Twitter and get outside instead.  Out there, look for the good in the world, the helpers.  We all can be helpers, starting with the children.  Thank you Mr. Rogers for this gentle + timeless reminder. xo.

invincible summer

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I wrote this essay after attending the Callanish Retreat at Brew Creek Centre in late April.  A version of this piece will also be published in the Callanish newsletter.  

My breast tumour was treated well by health professionals over the course of my cancer diagnosis and treatment last year. My mass was identified, removed and destroyed. The remaining parts of my breast were radiated for good measure. Eventually, my physical scars began to heal, my hematoma shrunk and my burned skin faded.

The rest of me – the bits that were attached to my cancerous breast and housed my mental, emotional and spiritual health – were largely ignored by clinicians. I craved kindness in every health care interaction, even trying to make eye contact with the parkade attendants to no avail. I rarely found the loving kindness I so desired in the hospital. To them, I was just another middle-aged breast cancer patient. It was as if I was an unwanted breast mass and nothing more.

I endured my treatment deep in a state of emotional suffering. I had trauma from the hospital experience and was rattled by catching a glimpse of my own mortality. Even worse, cancer had triggered all the unresolved issues in my life. It was as if all my sorrow that I had carefully packed away the past 50 years was on full display on my kitchen table. I had no choice but to look at all this ugly pain that stemmed from my family of origin. I had no tools and little support beyond my dear husband and beloved children, who were also healing from my cancer in their own way.

I was discharged from counseling sessions at the hospital after four short sessions. “Where do I go now?” I sobbed at my last appointment. “Google therapists,” I was told.

Thankfully, Callanish Society showed up in my search results. I embarked on counseling appointments with Susie Merz, trekking across the city for regular sessions as the rest of me slowly began to heal.

I embraced everything about the Callanish house – the streaming light in the building, the warm greeting when I walked in the door, the peaceful hushed atmosphere, the tea offered to me at the start of each session. It was everything I was missing in my patient experience at the hospital.

I signed up for the Callanish retreat, but was terrified of the idea of being part of a group. I’m an introvert – fine in one-on-one situations, but I struggle in larger settings.

The retreat date crept closer. But because of my work in therapy with Susie, where she gently guided me through my pain, I was feeling stronger and more resilient. I didn’t know what to expect, but I felt ready to be with other people who had cancer too.

To prepare me for the retreat, Susie sagely recommended: “You will have to allow people to be nice to you.” As a caregiver, mom to a kid with a disability and classic nurturer and pleaser – as silly as it sounds – allowing people to be nice to me was a challenge.

Driving up to the gravel parking lot at the retreat location at Brew Creek Centre, there was a group of lovely women standing there, smiling and waving, awaiting my arrival. My room was beautifully appointed and tucked away on the second floor of a wooden cottage. There was a massive vase of gorgeous flowers to welcome me. This was my first glimpse into what was to come in the next five days.

We began each day meditating, learning qigong and slowly waking up to the sounds of beautiful crystal singing bowls. There was hard personal group work in the mornings, carefully facilitated by professionals, focused on loss and death. The afternoons were for rest and relaxation – with therapeutic touch, music and counseling. The day was studded with joyful meals, prepared with love by the volunteers in the kitchen. There was camaraderie, laughter and tears. Each day ended with an evening council, where everybody – staff, volunteers and participants – gathered in the great room around the crackling fire.

I was treated with unconditional kindness. I did allow people to be nice to me because I never once felt judged. Just being me seemed enough. It gave me comfort to know that every person working at the retreat was there to share her gifts with us. There was a clear belief in the concept of benevolent service – an approach that is sadly missing in today’s health care world. Us retreat participants were not a burden – instead we felt like a joy. I had a sense that every touch at the retreat was carefully planned and tweaked based on years of wisdom. I wasn’t scared because I was safe.

Here are the fragments of what remains after the Callanish retreat: I have access to a new serenity inside of me. I don’t wake up feeling panicked anymore. When worry crosses my mind (and negative thoughts do still come) I now have tools to pull up to let them wash over me. I can close my eyes and breathe, listen to music, walk in nature, or simply remember my time at the retreat. If I start ruminating in the past or fretting about the future, I pause and centre in the moment. I look up in the sky and think, “It’s a beautiful day.”

My husband says that I smile easier now. For anxious, tormented me – these newfound skills are the ultimate gift for me and my family. Despite cancer (or maybe because of it?), I have finally found a sliver of peace in my heart. A deep, heartfelt thank you to all the kind souls dedicated to the Callanish retreat for guiding me towards my own invincible summer.

Edited to add:  I so wish we had more Callanish in health care.  More care, more service, more kindness, better food, more acknowledgment of the trauma patients and families have been through, more love.  xo.

 

The Wonder

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My kids: Ella, Isaac + brand new Aaron, 2003.

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018.  It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings.   You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

 I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

Twenty Days Last May, part II

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(A prompt from my writing class:  describe a moment you are at peace)

For twenty days in between appointments, I walked. I walked in concentric circles around the hospital – down to False Creek, up the Cambie hill, west to the fancy shops and east to the hipsters with their big beards.

For twenty days, I looked for a picture. In the hospital, all my photos were taken in black and white. But outside out on my stroll, I searched for colour.

I snapped a tabby cat sunning on a step, the city view peeking through the condos and a bicycle parked against a tree, its basket filled with flowers. Once a crow flew at me on 10th street, angered I had passed too close to its babies. I continued on. There was a coffee shop filled with books, a burgundy mosaic pattern on a store floor and the blossoms slowly filling the tree canopies with early spring.

On my last day of those long 20 days of treatment, I spotted some graffiti on an alley wall. It was a perfect pink circle with stencilled words that simply said – you are here.  And that is enough.  xo.

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