miguelito’s little green car

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My son Aaron was involved in a fun project with talented Edmonton-based photographer Leroy Schulz.  It is called Miguelito’s Little Green Car.  Aaron joins the ranks of celebrities like Kate Middleton and Gordon Ramsay who have had their photos taken by Leroy with this little green car.  (Aaron was especially thrilled to have his picture join Snoop Dogg’s).

Leroy explains the intention of the project:

This project is meant to remind us that we are all connected. Thousands of people from around the world from all walks of life are interconnected through the green car.

The photo itself is fabulous  It was taken on our terrace last week just before the big snow on the west coast.  I especially love Aaron’s interview and how he describes himself.  He speaks with brevity and communicates what parts of his identity are most important to him – you will note that his YouTube channel ranks up there.  He spends hours of his time working on Dangerously Waddingham.

I am in Grade 10 and almost 16 years old. I was born in Edmonton but now I live on a mountain in Burnaby, British Columbia. I have Down syndrome. This means I have an extra chromosome in my DNA.

I want to be a YouTube star!

Indeed, we are all connected, no matter (or does it matter?) how many chromosomes we have.  Being human is simply enough reason to be connected. Do not fear the differing chromosomes.

While I adore initiatives like Rick Guidotti’s Positive Exposure program, I’m also a big fan of the organic inclusion of disabled people like my son in regular campaigns – not as a ‘special’ addition, but just as a matter of course.

Bravo to Leroy for expanding the diversity of the Little Green Car’s portfolio.  This is much more than a picture.  Aaron’s inclusion in Miguelito’s Little Green Car project demonstrates to our son that he matters too.

I See You

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Aaron + his mama. (Shared with his consent).

Last night, Aaron and I got fancied up and went to out to a play. He wore his suit jacket and a black tie and I changed out of my regular mom jeans into a green velvet dress. This was a big occasion for us.

This is the Point was playing at the PuSH Festival at the Cultch Historic Theatre in Vancouver. This play initially caught my eye because the two lead characters, Tony Diamanti and Liz MacDougall, are actors with cerebral palsy. They share stories about their own lives along with Dan Watson (and Christina Serra, represented by video), the parents of their nine-year old son Bruno, who also has CP.

Aaron doesn’t have CP; he has Down syndrome. But I’m not sure the difference in diagnosis matters that much – he lives the common experience of being disabled. He enjoys his grade 10 drama class at school and is becoming more interested in live theatre. A play featuring actors with disabilities is an unusual thing. (It shouldn’t be. But it is). I think it is my job as his mom to show him what is possible.

This is the Point is a real-life montage of stories, shared through live performances and video vignettes. It includes audience participation – we were encouraged to read Tony Diamanti’s words out loud as he pointed to letters on a communication board. I loved this invitation to be a part of Tony’s world – a contrast to the common notion that disabled people must always fit into our abled-bodied spaces.

Before the play began, Dan wandered about the audience handing out Hershey kisses. He then announced, ‘We do things at our own pace,’ to set the tone for the show.

The play is a peek behind the curtain of having a disability and being parents to a child with a disability. It gave space to stories that are told but not often heard or acknowledged by the general public. The play explained communication devices, talked about consent (or lack of it) and touched on abuse.

I think that stories can teach you something new or validate what you already know by creating a mirror for your own experience.

Here’s the something new from This is the Point: disabled people don’t always communicate as we do, they have a sense of humour, curse, are sometimes horny, have sex, fall in love and drink vodka. The question for me is: why should this be new to me? How does being surprised by this reflect on my own misconceptions about adults with disabilities? As human beings, we are all the same. And we are all different too.

This is the Point offered a commentary on my own experience as a parent too. Dan recounts a heart-breaking scene from his local playground, where the neighbourhood kids keep asking about Bruno, over and over again: What is wrong with him?

“Why do I have to keep explaining why I love my son?” asks Dan, exasperated in response.

I’ve felt that pain too. Playgrounds are an especially cruel place, a petri-dish for children whose parents who have never to bothered to explain about disability or kids who are different. At another point, Dan exclaims, ‘Suck it doctors!’ in reaction to the doctors who told him everything his son wouldn’t do. I almost stood up on my chair and cheered.

After the final applause, I leaned over to Aaron and asked what he thought. I wondered how it felt to see disabled people in a play.

“Good!” he said enthusiastically (although he hid behind his suit jacket during the ‘sexy’ scenes). He was eyeing the actors, who were all still on stage chatting with audience members.

‘Do you want to meet them?’ I asked. ‘Yes,’ he said, ‘but come with me.’ ‘You go,’ I suggested, always eager to pull back from my hovering mother role.

He took a breath, marched up to Liz MacDougall and extended his hand. They looked at each other, smiled and shook hands.

‘Did you say anything?’ I asked when he returned. ‘No, I shook hands,’ he said. Somehow that handshake – the congratulations, the job well done, the nice to meet you, the thank you – was simply enough.  Aaron does things in his own way and that is how it should be.

Thinking about the play, I thought how rare it is for Aaron to see himself reflected in anything other than fundraising or awareness campaigns. We need more stories like This is the Point in our increasingly polarized world. Not as ‘special’ stories, but as stories as a matter of course, on regular rotation, in the media, performing arts, literature and film.  I promise that when I find them, I will amplify them.  And you can too.

You see, if you open your eyes and bear witness to stories that are different from your own, you never know what you might discover (mostly about yourself).  Bravo to the This is the Point cast and crew.  You made your point and you made it well.  xo.

Far from the Tree Documentary

I lug the book Far from the Tree, all 962 pages of it, around with me to family meetings and client sites at children’s hospitals and disability organizations.  It is a meticulously researched and beautifully crafted book on parenting, and more importantly, on love and acceptance.  Andrew Solomon has written a masterpiece.  This book has moved me so much that I titled my essay that I wrote for the New York Times Far from My Tree. (It is a piece written about my punk rock son, inspired by Solomon’s work).  Solomon has helped me dig deep about parenting all three of my children, who are different from me in their own unique ways.  It made me ask:  did I really have children to create versions of Mini-Me?  Or was it my job to unconditionally love, support and accept them to be full versions of their fine selves?

I’ve been scrounging around to find a way to bring the Far from the Tree Documentary to Vancouver.  GREAT NEWS.  It has been released on Netflix Canada.  If you love or work with someone with a disability, please take 90 minutes of your time and settle in and watch this exquisitely crafted film by Rachel Dretzin.

Solomon has broken the fourth wall to tell his story as an author and what writing a book about parents, children and the search for identity meant to him.

Writing this book set me free.  It broke me out of the narrative from my childhood. -Andrew Solomon

His parallel story as a gay man is gently presented along with stories from Jason, Jack, Trevor, Loini, Leah and Joe.  Jason is 41 and has Down syndrome, like my 15 year old son.  I watched the segments with Jason closely. He’s the son of Emily Perl Kingsley, who famously wrote the essay Welcome to Holland.  (Anyone who has a child with a disability has been gifted this essay by well-meaning friends).  Jason speaks many truths.

Here in reality, everyone is different. -Jason Perl Kingsley

Jason is right, of course.  We are all different but us typically-developing people are terrified of difference and shun this reality. Far from the Tree examines this paradox with little commentary and judgment.  The stories are strong and stand on their own.

I especially loved the film for the space it gave to the people with disabilities to do the talking. Us parents normally take up a lot of airtime, when we should be making room for our loved ones to speak in any way that they can.  I’m learning this lesson slowly as my son gets older.  His story is different than my story.  He lives with disability.  I do not.

Joe is a philosophy professor, has dwarfism and is eloquent with his words.  “What body you are in has everything to do with your perspective in the world,” he says.  “It surprises people when I indicate that I’m not suffering.”

Far from the Tree offers up a lot to think about.  As Joe points out, physicians see normality as the end goal.  But why is that?  To what lengths do we chase the normal?

The dad of Jack, a young man who is autistic and non-verbal, tearfully says about his son,  “He’s abnormal in a really good way.”  Far from the Tree rightly challenges the concept of normal and offers up the question:  what makes us human?

I’ve always thought the disability community and its allies could learn much from the LGBTQ2S world.  As Solomon asks, drawing a comparison between the two worlds:  Is defectiveness a matter of perspective?  How does illness become a celebrated identity instead?

How do we decide what to cure and what to celebrate?  -Andrew Solomon

I wept at the tenderness of this film: the scene of Jason at the museum with his mom, the image of him sitting on his back deck with his two roommates.  Andrew Solomon walking arm in arm with his father, Trevor’s family gathered around the video screen to talk to their incarcerated son.  Loini meeting people like her for the first time at the Little People’s convention, Leah and Joe dancing quietly together on a rooftop.

I thought about my own instinct to protect my son to the point of overprotectiveness. I thought about all the therapy we subjected him to in his early years.  I thought about how hard he tries to fit into the regular world, and what joy he finds with other people with Down syndrome.  I thought about fixing and curing vs. love and belonging.

Far from the Tree, the book, and now the movie, has made me think about all this in a good yet hard way.  I thought about my son and how, as the movie says, he has his own mountains to climb, which aren’t my mountains – they are his mountains.  I thought about how I can support him to do that.  I thought about how it is also my job as his mother to set him free.

What am I looking for from any book or a movie?  I want to be surprised or validated.  Far from the Tree magically does both.  Through stories, it asks many questions that only you can dig deep and answer for yourself.  That’s what good art is all about:  to see another way of reality that is not your own and to help you question what you think you already know.  Far from the Tree is poignant storytelling at its best.  It touches hearts to change minds.

my small comfort list

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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.

Twenty Days Last May

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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.

a portrait of the patient experience

I strongly believe that patients should tell their own damn stories, in whatever way makes sense to them.  Do you want to support someone who is suffering as a loved one or health professional?  Listen to their story, no matter how difficult it may be for you.

While I’m a word person, I’m fascinated by those who use other forms of art to share stories.  The Portrait of the Patient Experience is a TEDMED talk about the intersection between health and art.  Ted Meyer is a visual artist from Los Angeles who has created visual art, first from his own scars and then from the scars of others.  He facilitates discussion between artists with chronic diseases as the Artist in Residence at the University of Southern California’s Keck School of Medicine.  He does what I call The Important Work.

Here’s a favourite quote from his talk:  People always say – art should be about something until art is about something and then they don’t really want to look at it.

On a personal note, I shared the podium with Ted two years ago at Collaborating Across Borders, an interprofessional conference for health academics.   While I spoke about this, Ted impressed with his humour and creativity.  I knew he’d go far and that he did.

He says about patients:  Pre and post scar narratives are held together by their scars to give their life a new meaning.

I strongly believe that we can inspire, motivate and educate by sharing our stories in whatever form that makes sense to us.  Importantly, telling our stories also helps us to heal.

Arthur Frank references Judith Zaruches in his formative book The Wounded Storyteller,  Stories have to repair the damage has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.

There are many ways to tell your story: a private journal, the whispered word, poetry, visual art, music, dance – or any other artistic form.  Creativity is an expression of you.

For those supporting wounded storytellers, it might be difficult to look at these scars.  These scars remind us that we all have the capacity to be broken and vulnerable in some way.  It is a great gift to those of us who are suffering not to look away.

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There are so many secrets in the land of being a sick person – secrets associated with being that sick person and secrets in the health care world we are immersed in.  Now I’m no Oprah and I know nothing for sure.  But I do have a strong sense that the telling of these secrets will help set us free.

 

The Affronts to My Human Body

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As I get older, I have become an accumulation of scars. A hernia repair when I was 8 years old left two faint, raised scars. Two attempts to remove an ovary resulted in a keloid in my belly button and other healed wounds from laparoscopic oophorectomies. (The term oophorectomy still makes me giggle). My partial mastectomy early this year left a one-inch scar that just peeks out of my bikini top. I have another scar and a lingering hematoma under my arm from lymph node removal.

I understand the medical need for these scars. They are evidence of removing things that were causing me trouble. But there have been other, unnecessary, affronts to my body.

In the process to be diagnosed with my bleeding disorder (von Willebrands, a common malady that is not hemophilia, but it is severe enough I wear a Medi-Alert bracelet because of it), a lab tech cut me three times with a razor-blade. She cut me. I couldn’t freakin’ believe it when it happened. I said: YOU ARE CUTTING ME WITH THAT? She said yes and then she cut me. They wanted to see how long it took me to clot without medication, with a bit of medication and with a lot of medication. (They administered the medication by stabbing me with a needle in my stomach, which was not pleasant, but at least it was temporary).

The three scars left from this bizarre diagnostic procedure are not temporary. They are on the underside of my forearms and they are permanent. It looks as if I might have had a cutting problem (I didn’t).   I am not pleased that nobody has thought of another way to test for von Willebrand’s without cutting people with razor blades on visible places on their body.  I think we can do better than that.

Along with scars, breast cancer gifted me with a blue nipple (that is thankfully fading) and two permanent radiation tattoos. When I was in for the appointment to prep for radiation, the Radiation Therapist took out this box thing with a needle and ink. And then she proceeded to poke me with it in two places – right in my cleavage and on the side of my ribcage. This was bizarre and these tattoos look like blackheads. I asked if she could at least make them into flowers but she didn’t think that was funny.  They put stickers on me, too, and drew on me each radiation treatment with a pen. That didn’t bother me so much, but it does disturb others. One woman on Twitter recently said the markings made her feel like a piece of meat. I can totally see that.

I asked a friend who is a Radiation Therapist – why the need for permanent marks for radiation that is over in four weeks? She told me that we get tattoos because other ‎marks or tape wash off and there isn’t a semi-permanent alternative.

This all seems weird to me and falls into the category of: what is a big deal for me isn’t a big deal for health care professionals.  What I don’t like is the permanent nature of something that the hospital only needs for a few weeks.  This seems to tread on my dignity.  It strikes me that there are many ‘side effects’ from procedures in the hospital that are shitty for patients, but convenient for clinicians so nobody does anything to change it.

My friend did add: there is quite a bit of research looking at alternatives like henna, UV lighting and “invisible” tattoos and external surface landmark light systems.  To this, I say: YES DO MORE RESEARCH. As a patient, this is important to me. I don’t want a stupid blackhead tattoo looking at me for the rest of my life. If patient like me were engaged to set priorities in cancer research, I’d ask to figure out a way to get rid of the damn permanent tattoos, pronto.

Little black dots might seem minor in the grand scheme of things, but I didn’t like losing even more control of my suffering body one little bit. I asked my nice oncologist if it was medically okay to get a tattoo on my breast to cover up their tattoo. He said very solemnly, ‘there are no counter-indications to getting a tattoo.’ He probably thought: this woman is clearly in the middle of a mid-life crisis and losing her marbles, but he was too polite to express any judgment.

So I travelled to Hawaii and got my very own tattoo to cover up the radiation tattoo on my breast. I went to a place in Maui called Hula Girl Tattoo. The young dudes working there have seen everything and they didn’t even blink at my request. I told them they were doing good work covering up a middle aged mom’s cancer tattoo.

Part of getting my tattoo was to say: Take that health care system! I am in charge of what permanent marks adorn my body!  I’m also going to send the cancer agency the bill for the tattoo and see what happens. It was $200 US. (KIDDING. I AM KIDDING).

More seriously, I have this pipe dream that one day patients will work together with health professionals to set research priorities to figure out how to minimize the many indignities that are inflicted on us in hospitals.  Then we will no longer have cuts on our arms or permanent radiation tattoos.

I love the way every personal tattoo has a story behind it. (I also have three birds on my shoulder that symbolizes my three kids growing up and spreading their wings).  My new radiation-cover up tattoo is a constellation of hearts with a sprinkling of stars. A purple star has replaced the ugly radiation tattoo. One of the hearts is for my husband Mike, who has been my unwavering rock these past few awful months. (I didn’t think a tattoo of a rock on my boob would be very attractive).   The other heart is for me, to remind me to love myself. I’d post a picture, but the tattoo is in my cleavage. I know my extended family already think I share too much on my blog so I won’t mortify them further by posting boob pictures.

It hurt to get the tattoo, especially the part near my sternum, but Mike was there to hold my hand, exactly as he’s done the past eight months. Tears leaked out of my eyes, not because of the pain, but because I felt grateful my treatment is done, my cancer was caught early and I’m alive to tell this tale. My new tattoo is a symbol of my own story having cancer. This is my story to tell, not cancer’s. Slowly, slowly, I’m taking my power back, one heart in my constellation at a time.

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