Pura Vida

I wish that every new family who finds out their baby has Down syndrome could see this goofy little video.  I wish that every physician who discloses a Down syndrome diagnosis would watch this too.

This is my son Aaron boogie boarding in Costa Rica last week.  Aaron is 15 years old and has Down syndrome.  He also gleefully jumped off the second level of a boat into the Pacific Ocean (four times) and went for a long hike in the jungle where we encountered a troupe of wild capuchin monkeys.  (That was AMAZING). These were all hard-fought victories for him.  It took many years of swimming lessons for Aaron to be confident enough to put his face in the water, never mind jump off a boat.  Even five years ago, he’d balk at the notion of going for any kind of walk by sitting on the ground and refusing to budge.  It has taken supportive community support folks, Physical Education teachers, Special Olympics, a move to a warmer climate and many meandering walks to the grocery store to get him to the point of hiking in the jungle.

Pura Vida is a popular saying in Costa Rica.  It roughly translates to ‘a slower life’ or a ‘pure life.’  A more literal translation from Spanish is ‘nothing but life.’

While Aaron is not on this earth to inspire us (as explained well by the late great Stella Young), he does live a full life.  I did not know this was possible when he was first born.  Everybody told us how hard life would be, but nobody told us about the Pura Vida.  Our family has made damn sure that Aaron lives a good life (and we do too, through our fortunate association with him).

How I wish I had a crystal ball during the dark time of Aaron’s diagnosis almost 16 years ago to catch this little glimpse into his future.  How I wish that instead of being handed that stupid book about every possible thing that could go ‘wrong’ with babies with Down syndrome that I had been connected with another family with an older child to see that our lives were not over. In fact, Aaron’s diagnosis offered us the beginning of a new life instead.  Yes, in many ways having a son with an intellectual disability has made our lives slower. But a slow life is not a bad life.  It is just a different life.  And don’t you think we all could use a sprinkling of a little Pura Vida too?  xo.

good inclusion

Screenshot 2019-01-05 15.59.58.png

I read the Globe and Mail article today with the rather misleading headline: Are Inclusive Classrooms Failing Students?  (I’d edit this headline to say people are failing students, not inclusive classrooms).

I feel deeply for the families who shared their stories for the piece.  I’ve been one of those families.

We can blame the system but the system is made up of people.  Never forget that.

My son is 15 years old and in Grade 10.  He has Down syndrome.  His story of inclusion is a rocky one, especially in the elementary school years.  His experience from grade 1 – 3 was so bad – and included torment by boys in his classroom that went wholly unaddressed by the principal – I think because the main perpetrator was the son of a prominent lawyer and doctor – that we sold our house and moved across the city to get him into a more welcoming school where we knew he’d be safe.

It was then we realized that each school is different and each year is different, depending on the mix of other kids, families, principals, teachers, Educational Assistants and school districts.  If even one of those factors is misaligned, inclusion is so precarious that the whole house of cards comes tumbling down.

I don’t want to dwell on the bad inclusion.  I want to offer hope to families who have loved ones with disabilities.  It can get better.

Now Aaron is in his third year of high school.  He attends all regular classes – classes that he himself chose – including two academic classes.  He does not balk at going to school now.  As far as I can surmise, he’s happy and importantly, he’s learning and growing.

His first year of high school was a tough transition.  He tested the teachers and it took them some time to get to know him.  But then one unusual thing happened.

In November that year, the special education teachers asked me if I wanted to speak to the school’s Professional Development Day about what inclusion means to our family.  This was my last big talk before I was diagnosed with breast cancer.  Believe me, I took this talk very seriously, as I had a sense about how seminal it was.  I prepared extensively  – interviewing many other families about what they wanted me to share.  I talked to Aaron at length about what was important to him.  (I wrote about what I said here).   It was the most important presentation of my life.

This was because I had a chance to share family stories with the teachers – almost 100 of them – about what mattered to families like mine.  On the day of the talk, I was a sweating nervous wreck.  Thankfully, the audience listened graciously, about what was important to Aaron and to other families who had children with disabilities.  I also spoke about how inclusion benefits the other kids, and how disability is part of diversity just like race and gender orientation.

The teachers’ openness to listening to family stories was everything.

I have been ‘that’ mom for years.  But after the teachers heard my stories, something shifted.  Maybe I was was no longer the difficult ‘special needs’ mom.  Maybe I was someone like them, a person who had something unexpected occur in their life – in my case, I happened to have a child born with a disability.  I was firm in my assertion that my kid had a right to an education just like any other kid.  I was clear that Aaron wasn’t just a problem – he was in fact someone worthy of love and belonging, just like anyone else.

I’ll never know if my talk made a difference.  I don’t think I am the best speaker in the world or that I imparted great wisdom.  But I did tell my story, and shared elements of other family stories, and the teachers did listen.  I do believe this helped Aaron be understood and accepted, even a little bit.  At Aaron’s high school, I have a strong sense that the leadership and teachers believe in Aaron.  That’s so crucial.

I’m writing this post as our little family of three is in the middle of a sleepy vacation.  Today we were in a surfing store.  I noticed the owner watching Aaron intently.  Finally he said, “I have a son with Down syndrome too.  He’s three.”  We talked for a few minutes about how his son was doing and also about how hard life is sometimes.

As I was going out the door, I turned to him and said, “Ah, but it is the most important things in life that are hard.”  He paused and nodded.  We smiled at each other, our secret shared.

The most important things in life are hard.

For the families struggling, I want to say that things are hard because they are important.  I agree that it isn’t fair and it isn’t right.  But also I know you can do hard things.  Keep speaking up.  Keep sharing your stories.

For the educators, please make the space to listen to family stories.  I promise you it can make all the difference in many people’s worlds, including your own.

as evidenced by his smile

ativan

This quote nicely sums up most of my oncology appointment experiences.

I pounded out a long account of the terrible oncologist appointment I had on Thursday. It felt good to write it, but only in a revengeful kind of way.  I was going to post it but then I deleted it.  Anybody who is a patient already knows what a demoralizing appointment looks like.  The oncologist seemed annoyed with me from the moment she walked in the door.  I did not know whether she was having a bad day or if it was me that was annoying her with all my stupid questions. I left the oncology clinic worn down. I shuffled across the street to the cancer hospital to get my blood drawn, just wanting the whole afternoon to be over.  This was a day to be endured.  I hate being a patient.

I sat in the waiting room and the lab tech came out and called my name.  I had my head down and was feeling small and dejected.  I looked up and he was smiling at me.  In my current state, this made me nervous.  I smiled back, just a little bit.  He smiled wider.  This smiling business was contagious. Here was someone who seemed actually happy to see me.  I didn’t feel like an intrusion or bother to him as evidenced by his smile.  I could feel myself start to relax.

He walked me to the lab and invited me to sit down.  “What arm would you like?”  “Um, right,” I said – “I’m left-handed.” (I don’t know what difference that makes, but I was feeling a wee bit less guarded and thought I’d dip my toe into some conversation). “I’m left-handed too!” he said, delighted.  We concluded that means we are both creative. We smiled at each other some more.

I didn’t even feel the needle to take my blood go into my arm.  He praised my veins and asked about my Christmas.  “How many kids do you have?” he asked.  And later, “I can’t believe you have a 25 year old!”  I was still smiling, feeling a bit silly that I was so easily flattered.  My mood was shifting.  I was now feeling considerably better, sitting in a chair at the cancer hospital getting poked by a needle for five vials of blood.

What defines these people as heroes even though they are not almighty, or rich?  -from Hero by Evie Jordan

This kindness was such a contrast from my appointment across the street with the oncologist.  This young lab tech went to school for two years to be a medical laboratory technician.  The Internet tells me he probably makes less than $30 an hour. He’s near the bottom of the hospital pecking order. My oncologist went to school for more than ten years and is one of the queens of the hill at the hospital, status-wise.  She makes considerably more than $30 an hour.  Guess which person I’d consider a hero?  Guess which experience with which person I’d rather spend my time thinking and writing about?

This lab tech has much to teach the rest of the health care world about connecting with and caring for patients.  I feel deeply grateful for him.  As Evie Jordan says,  A hero is someone who will help, even with the little things.  I’m here to tell you that the little things matter.  They matter a whole lot, especially when you are sick, vulnerable and scared. To health professionals everywhere, know this: your compassion is evidenced by your smile. xo.

 

 

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.

humpty dumpty

U2

On the last day of a cancer retreat I was at last spring, the facilitators talked about planning for our re-entry into the real world. It was as if we had been astronauts in outer space, tucked away in a remote lodge in the mountains by Whistler, surrounded only by unconditional love, kind touch and good food. Re-entry meant taking care of ourselves when we returned to the jarring noise of the city and the tyranny of the busy.

I have been lucky to have a gradual re-entry to the paid work force after my cancer treatment and recovery. I dipped my toe in by picking up my partner duties with our communications company and dabbling in editing patient materials and annual reports. This served me well as the rest of my days were filled with long walks, mental health and physiotherapy appointments as I concentrated on picking up the collateral damage caused by cancer. I was, and still am, disoriented from what happened to me.

My ability to have a gradual re-entry is due to my privilege and the fact my husband has a decent contract that supports our little family. Many people I know who have had cancer work right through treatment or are forced back to work immediately because of draconian human resources rules and restrictive disability insurance policies. True, some people have other needs to work too, for the distraction or the social connection. We should allow everybody to do cancer recovery in their own way. But I somehow knew I had to be alone in my own thoughts in order to heal. This was both the most terrifying and the hardest thing I’ve ever done.

The world wants stories that tell the happily ever after, to tie things up like a bow on the present. There is a lot of pressure to forget about cancer, to go back to the way things were before and even worse, to be BETTER THAN EVER! This expectation is exhausting.

I cannot go back to the way things were before because I am no longer the person I was before. Once you’ve broken open, there’s absolutely no way to re-assemble those pieces in the same way. I’m Humpty Dumpty. All the king’s horses and all the king’s men can’t put me back together again.

I think a lot about how to construct a story. I like the tidy endings, the moral of the story, the lessons learned, the take-aways. It pains me as a writer not to have that now. (See how I’m jumping around here with my paragraphs, with no transitions or linked thoughts? If this was a marked essay, I’d get a D-). The messy is messy.

I often listen to podcasts on my long walks. Recently I heard a Good Life Project interview with Casey Gerald. He talked about his (brilliantly-named) book called There Will be No Miracles and said:

           My one nugget is that the world wants to turn you into a nugget.

I stopped in my tracks, rewound the interview and listened to it again.

            My one nugget is that the world wants to turn you into a nugget.

Don’t let them turn you into a nugget.

I do have some unfinished inklings: I’m done being a doormat, so I’ve started severing relationships and commitments that I’ve allowed to become unhealthy. My contributions have value and worth. Integrity – acting how you say you believe – is crucial. Small, individual kindnesses are everything. I must seek joy every day. Holding space for someone is a gift. Less talk, more listening, more action. And something political: the need to be king of the castle is destroying our world.

As much as this hurts me, I’m going to leave this little essay here – gaping and with the bow overtly untied. I’m not Oprah and there’s nothing I know for sure.

I only hold tightly to my broken record statement: we must keep speaking up to share our messy beautiful stories to both heal ourselves and to change the world.  Something I’ve added this year, that I feel very strongly about:  It is our responsibility to make room for other people’s stories too, not just our own.

I resolve only to drag all my unfinished pieces into 2019, to keep my head up and to keep going, even at my snail’s pace. I will be taking a rest when I need it. I hope you can too. Xo.

a muddled mammogram mess

Screen Shot 2018-12-11 at 6.32.09 AM

Edited to add:  Thanks to all the people on Twitter who think they are my oncologist.  (Sarcasm intended).  I understand that the guidelines are for screening mammograms, not diagnostic ones.  My point is that even though I presented with a ‘symptom’, I only went for a diagnostic mammogram and ultrasound (that eventually found my cancer) AFTER I presented to my doctor and asked to be referred.  If I had a doctor that dismissed me, or who didn’t believe me, I would have been sent away.  I was LUCKY to have the doctor that I had and I am LUCKY that I am able to advocate for myself with my boatload of privilege.  Breast cancer diagnoses should not be left up to LUCK.  Ps:  This is my story and I own it.  

There are new guidelines in Canada from the Canadian Task Force of Preventative Health Care about breast-cancer screening. These ones place the responsibility to be screened on the shoulders (breasts?) of women.

“…women should decide for themselves, with guidance from their health-care provider, whether to get screened.” –Carly Weeks, Globe + Mail

As a woman who has had breast cancer, I feel deeply conflicted about this approach.

I found what I termed a ‘ridge’ in my left breast one night laying in bed watching television. It was directly over my heart and it did not go away over the next several weeks. I reluctantly made an appointment with my family doctor to see what she thought.

“It might be hormonal,” she said. “But if you are concerned about it, I can refer you for a mammogram.”

I had no history of breast cancer in my family and I was two years away from being sent for a regular mammogram at age 50, so I said yes. So began the agony that is breast cancer diagnostics, diagnosis, treatment, aftermath and collateral damage that has consumed me for the past two years.

My breast cancer was early stage and I ended up with a lumpectomy and 20 days of radiation treatment. The tumour was hidden deep in my breast, right against my chest wall.

If I had not gone for a mammogram and then subsequent ultrasound, would the tumour – which was slow-growing and lazy – have killed me? Was I over-diagnosed? I will never know.

All this talk in the media about over-diagnosis makes me think: should I have left well enough alone and not even mentioned my concern to my doctor?  On one hand, not going for that initial mammogram would have saved me a great amount of suffering.  On the other hand, I DID have cancer.  Would it have come back with a vengeance a few years later?

The Task Force summary says this:
Screening leads to overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime, as well as physical and psychological consequences from false positives. Women less than 50 years of age are at greater risk of these harms than older women.

While I whole-heartedly agree about the physical and psychological harm, I do question the ‘unnecessary treatment’ part.  How do we know that my tumour would have eventual killed me? Answer:  we do not know if my cancer would have or would have not caused me harm in my lifetime.  There is no diagnostic test or pathology that has been developed to tell me that for sure.

Once the pathology came back as malignant, I was thrown on the roller-coaster that is breast cancer treatment. I could not not be treated once the word cancer was uttered –for the sake of my children, my husband and me. This is not a diagnosis that can be ignored.

I am grateful that my family doctor listened to me when I showed up with a concern. However, I do know that not all doctors listen to women. If it is up to us to advocate for our own mammogram screening, how many women will be dismissed?  While the shared decision-making model between patients and physicians mentioned in the report is a great best practice, how much does shared decision-making really happen in real life?  How many ominous tumours will not be found until they are much bigger and more deadly than mine was if women are not taken seriously and heard?

This report dismisses ultrasounds for women with dense breasts, which is a real thing. (My mass was detected by a subsequent ultrasound after my mammogram). It seems focused solely on saving money by displacing the responsibility for making the decision about the screening on the patient.

Let’s face it, mammograms aren’t fun. If you don’t have a good technician, this adds to the discomfort and pain. But having breast cancer ain’t fun either, especially if it is detected in late stages. I don’t mean to fear monger, but breast cancer can kill you.

This only adds to the confusion I already have about screening for breast cancer.   My one last question about it: were women who have the lived expertise of having had breast cancer represented on the Canadian Task Force on Preventive Health Care that made this decision? Cynical me thinks not.

just the way you are

IMG_2810 (2).JPG

The older my son gets, the less I am interested in fixing him.  This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome.  Our family now lives in a bubble that we’ve carefully created around us.  We surround ourselves with people who believe in him.  We purposely chose his high school where educators believe he can learn and grow.  If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives.  We have lost many people. Our world has shrunk to the size of those who accept my son as he is.

It was not always this way. When my son was younger, I dragged him to many therapies and interventions.  I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children.  I was determined to have the best child with Down syndrome ever!  I also wonder if part of my need to change my son had to do with my own discomfort with his disability.  What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome.  If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?

When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted. 
I finally realized that the only thing I could change is myself.
-Unknown author

This week I was at a CHILD-BRIGHT Annual Meeting in Montreal.  I stepped out of my bubble into the real world of academics, clinicians and researchers.  I realized how soft and warm my self-selected bubble is.  Not everybody feels that people with disabilities are fine just the way they are.

CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability.   Most of the research is conducted within a medical model.  I wrote down snippets of the language used by the researchers:

‘Quality of life’  ‘Deficits’  ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’

I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children.  I do appreciate their dedication to their work.  But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead.  What my son really needs is a less-hostile world.  He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility.  But we are tired, so terribly tired, and we need help).

I’m not diminishing the importance of research.  But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.