More About Bryson’s Brain

I couldn’t be more proud of Unlocking Bryson’s Brain, my new CBC podcast about my son Bryson, his rare disease and our family’s search for a cure. The first two episodes are now available and I can’t wait for you to hear them!

Subscribe wherever you listen to podcasts, including:

New episodes drop throughout April and May, and I’ll also be sharing bonus content related to Unlocking Bryson’s Brain on my other podcast: My Instruction Manual. I’ll be airing some interviews that didn’t make it into the podcast, and sharing some glimpses from behind the scenes, so make sure you’re subscribed! (Apple Podcasts. Spotify. Google Pocasts)

Scroll down to the end of this post to see the amazing video CBC created about Unlocking Bryson’s Brain.

More writing about Bryson

Here’s a list of some of what I’ve written about Bryson:

  • Will you help Bryson Find a Cure for GRIN Disorders (My Instruction Manual, 2019) Read here
  • Curing Bryson (My Instruction Manual, 2019) Read here
  • Grateful for Hope (My Instruction Manual, 2018) Read here
  • When Bad Things Make Us Better (My Instruction Manual, 2017) Read here
  • More Than Just a Diagnosis (Globe and Mail, 2015) Read here
  • We Have a Diagnosis: GRIN1 (2015) Read here
  • Baseball and Belonging (2015) Read here
  • My Father’s Day Pledge (2011) Read here

And to learn more about GRIN Disorder or to donate to help us find a cure, please visit

My Instruction Manual: Why Happiness is impossible Without Growth

I’m focusing my efforts on a new blog called My Instruction Manual. I’ve posted there every day for the past 16 days, so if you want to see what I’ve been up to, please follow me there.

Occasionally, I’ll share a post here. I published this a little while back on My Instruction Manual.


One year ago this month, physician-assisted suicide became legal in Canada. The law stipulates that doctors can only carry out the procedure in situations where patients experience “suffering that is intolerable to them and that cannot be relieved under conditions they consider acceptable.”

But it’s not physical pain that causes most people to request physician-assisted suicide. According to an article in the latest issue of Toronto Life magazine, it’s something much more profound.

In Oregon, where the practice has been legal for 20 years, the most common reasons cited by patients are loss of autonomy, an inability to enjoy life and loss of dignity. Doctors in Ontario say they’ve observed the same reasoning. … There is an underlying medical cause, but the suffering is usually existential. Patients find they are simply playing out the string, without any hope of finding meaning in the limited time available to them.

In other words, they are no longer able to achieve a fundamental human need — the need for growth.

I can relate.

In the months before my kidney transplant, the toxins were building up inside me, poisoning my body and mind. I was physically exhausted and mentally drained. I couldn’t work. I couldn’t exercise. I couldn’t learn. I wasn’t there for my family. My life was on hold. I had stopped growing.

Things got worse when I learned there was a chance I might not get approved for a kidney transplant because of an unrelated medical condition. This news threw me into depression. I knew I didn’t want to die. But life without growth didn’t feel like living either.

Humans have an insatiable need to grow. Our happiness depends on it. As William Butler Yeats wrote, “Happiness is neither virtue nor pleasure nor this thing nor that, but simply growth. We are happy when we are growing.”

Gretchen Rubin describes growth as a key contributor to happiness in her book The Happiness Project. (My review here.)

Growth explains the happiness brought by training for a marathon, learning a new language, collecting stamps; by helping children learn to talk; by cooking your way through every recipe in a Julia Child Cookbook.

So what does this mean?

It means we need to grow every year, every month and every hour.

It means we must never allow ourselves to believe that we’re too old to grow, or too old to change, or too old to learn something new.

It means we need to grow like our happiness depends on it.

It means we need to grow like life itself depends on it. Because it does.


Yes, the world needs another blog


Here on, I haven’t exactly been prolific. In fact, I’ve published just six posts since 2011.

But today I launched a new blog where I’m planning to post several times a week. This new blog — — will chronicle my attempts to live my life to the fullest, to be happier, healthier and more productive.

Why am I embarking on this journey?

About a year ago, I learned that the chronic kidney disease I’d been coping with for the past 17 years had taken a sudden turn for the worse. My kidneys were failing badly, leaving behind toxins that were slowly poisoning my body and my mind.

Fortunately, I was blessed that my sister offered to donate one of her kidneys to me. On April 11, 2017, her kidney was successfully transplanted into my abdomen.

I have a chance at a second life and I am determined not to waste it.

I’ll be cross-publishing some blog posts here, but if you want to see them all as soon as they’re published, make sure to follow at You can find today’s post here.

Muhammad Ali: Redemption arc with a twist


When Muhammad Ali died last month, the world mourned a saint who fought beautifully in the ring and sacrificed himself outside of it to stand up against inequality and unjust wars.

And that’s part of who Ali was.

But that’s not all he was. Muhammad Ali was a controversial figure, and to smooth out his rough edges is to miss much of the incredible narrative of Ali’s life. It is to miss that Ali initially rejected Martin Luther King’s vision of peaceful desegregation. It is to miss that Ali used hateful speech against his black opponents, attacking them for being Christian and “Uncle Toms.” It is to miss that Ali held dangerous views, not just for the white status quo, but for the mainstream civil rights movement.

At his worst, he was mean, sexist and self-obsessed. At his best, he was a kind, generous man who loved to be around people, playing practical jokes and preaching peace and tolerance.

The many sides of Cassius Clay / Muhammad Ali are captured in Fighting Words: The Greatest Muhammad Ali Stories Ever Told, which goes on sale today on Amazon for Kindle apps and devices. (The paperback and eBook for other devices will be available soon).

Fighting Words is the first release from FanReads, a new publishing company that focuses on fan-based anthologies. The FanReads promise is that we package up the greatest stories ever told for fans of sports, screen and music.

In the next few months, we’ll be releasing other books on sports (Toronto Blue Jays), screen (Game of Thrones, Orange is the New Black) and music (The Beatles).

Visit us at FanReads to sign up for our mailing list to be the first to know about our newest titles.


And go to Amazon today to download Fighting Words.

Ali’s story is so appealing because it is a classic redemption arc with a twist.

He is a man who falls, goes into exile, and is reborn first as a hero and later as a saint. What makes his story special, however, is that it is bidirectional. When Ali lights the torch at the 1996 Olympic Games, it’s not just that America is forgiving him for his past. Ali himself is forgiving his country.

CEOs shouldn’t do customer service. Here’s why.

Credit: Gordon Ednle. Used under Creative Commons.

Having trouble getting a customer service challenge resolved? Here’s a fail-safe solution: Email the president.

Late last year, I placed a large order from a Montreal-based retail chain that recently expanded to Toronto. Their wood furniture was beautiful and so was the in-store experience.

But while the brand promise was great, the customer service was a let-down. More than two weeks after paying for my furniture, I called the store to inquire about delivery date and was told to be patient. A few days later I called again. This time, the store representative told me they had no visibility into delivery dates. Emails to the company’s customer service address went unanswered for 20 days. I called the customer service phone number five times over several days and they were also unable to advise on when my order would arrive.

I got so frustrated that I did two things. First, I posted on the company’s Facebook page. Second, I emailed the company’s founders. Companies don’t want you to do this. They rarely post executive email addresses on their website. But with a little guesswork, it’s pretty easy to reach the right person. That night I got emails back from both founders as well as a telephone call from the company’s head of operations. On Facebook, a rep let me know my order was being expedited.  My Facebook post also elicited responses from a couple other customers who had experienced similar issues.

Then the next morning, I received a call from the third-party delivery company to advise that my furniture would come the following morning.

Emailing the chief executive officer gets results. I saw the same thing at the telecommunications company I used to work at. Complaints inevitably got answered far more quickly when the CEO knew about them.

This is great for customers but terrible for business. An escalation path to your top executive is expensive, inefficient and unfair. Your CEO should be focused on the engine, not the squeaky wheel.

Great companies understand that branding is about more than logos, advertising and in-store aesthetics. Brands are defined by fulfillment, operations, delivery and customer service. Amazon gets this. The online retailer almost never misses delivery dates and very often delivers products far sooner than the date they promise. 

(My twelve-year-old son reminded me that while Amazon gets the customer service part of branding, they’re not so good at the employee part of it.)

Some of the solutions are obvious. Emails to your customer service team need to be answered promptly. If you need more than one business day to respond, send an auto-reply to let the customer know when they’ll hear back. Make sure your customer service reps can actually service customers. This means they need to have visibility into delivery dates.

And here’s a big one that many companies get wrong. Make sure there is always an escalation path for your customer. If your rep can’t help, make sure they are able to get you to someone who can.

If not, your customers are going to take to social media. Or email your president.

We Have a diagnosis: GRIN1

IMG_5129Laura took a deep breath and mustered up the courage to call the neurology clinic.

Families of sick children were supposed to wait patiently. The clinic nurse had made this clear eight weeks earlier when Laura first called to check up on Bryson’s lab results. 

But parents quickly learn that it pays to be pushy. And what was supposed to be a four-month wait had stretched to half a year of waiting to find out if Bryson had tested positive for a degenerative disease that would prevent him from reaching adulthood. So Laura ignored the ‘don’t call us; we’ll call you’ directive and dialed again.

“The results still aren’t back,” the nurse said. “We’ll call you when they are.”

When Laura pressed, the nurse reluctantly agreed to check on the file. A few minutes later, the nurse returned to the phone to sheepishly acknowledge that an error had been made. Bryson’s blood was never sent to the US lab for testing.

The reality of this – another four months of waiting – hit Laura hard. She hung up the phone and wept.

Four months later, the results finally came back. They were negative.

For nearly a decade, Bryson has endured countless tests to try to uncover a diagnosis: A muscle biopsy. Multiple MRIs and EEGs. Dozens of blood and genetics tests. One by one, we crossed potential diagnoses off the list as every test came back negative.

But a few days ago our world changed. Through a full sequencing of Bryson’s DNA, we have a diagnosis. Bryson has an extremely rare genetic disorder known as GRIN1, named for the gene that is misspelled.

It’s so rare that our doctors don’t really know much about it. And there’s very little on the Internet about it. But through social media, we’ve already connected with families in the United States and Europe who have children with this diagnosis.

While details vary from person to person, the common symptoms include moderate to severe intellectual disability and low muscle tone. Many kids also have seizures. Interestingly, several of these children find joy watching sports.

And the good news: the disease isn’t degenerative. GRIN1 kids progress and develop in physical and mental ability at their own pace.

Our kind and brilliant genetics doctor, Ronald Cohn, confided he’s been surprised over the years at how happy families are to receive a diagnosis – even when it doesn’t change treatment.

And indeed, getting a diagnosis has changed our world.

Laura has always felt like maybe the pregnancy was her fault – that she did something wrong when Bryson was in her belly. The pressure on expectant mothers to be perfect is immense. Now she can finally let go of this toxic guilt.

And for me? I understand now that Bryson’s little body is doing exactly what it’s supposed to be doing given his own genetic code. He is perfect. Yes, one of his genes is coded differently, but the vast majority – some 20,000 – are copies of mine and Laura’s. 

Not only that, but we now have the knowledge that in the future, there could possibly be new treatments – medicines or gene therapies – that could help Bryson to progress more quickly.

The biggest change, however, is that our family is finally part of a community. It’s a small community; we know of just eight other people with the disease. But we are no longer alone.

Bryson will never be alone.

We found these families through a blog post a GRIN1 mom had written.

So I want to speak directly to any families who might find this post after receiving their own diagnosis:

First, congratulations and welcome to our community. Please reach out so we can learn more about GRIN1 together. Meantime, I’ve included some links below where you can read more about Bryson and other kids with GRIN1.


Baseball and Belonging

My Father’s Day Pledge


Penguins games therapeutic for Carnegie toddler with rare gene mutation


Aislinn’s Treasures: Just Grin


The road to social media hell is paved with good intentions


A few years back, my colleagues in the marketing department wanted to honour Canada’s veterans on November 11. They developed a Facebook image of a poppy floating over the company’s branding. While some of our social media followers appreciated the sentiment, others were angry at what they saw as a blatant attempt to brand a solemn memorial.

AT&T landed in hot water a couple of years ago when it published what it thought was a beautiful tribute to 9/11 by showing a photo of the twin towers through a cell phone.

But my favourite commemorative misstep was the tweet from SpaghettiOs which encouraged followers to take a moment to remember Pearl Harbor. The sentiment might have been fine but the accompanying photo – of a smiling, flag-waving piece of pasta – certainly wasn’t a good way to mark a military attack that killed 2,403 Americans.

This year, the Canadian financial institution BMO is recognizing November 11 with a campaign that encourages people to take a moment of silence in social media.

The concept is a good one. But when I went to sign up for the program I noticed a BMO logo on the Thunderclap page. The branding in connection with Remembrance Day didn’t sit well with me. Instead of joining in, I asked my social networks how they felt about BMO branding a moment of silence.

One friend said it was a “deplorable attempt at branding a universal sentiment.” Another called it a “big misstep” by BMO’s social media department.

But is it?

From personal experience and countless conversations with the smart, well-intentioned people who run social media at North America’s biggest brands, I can tell you that there is rarely a cavalier attempt to sell more pasta or RRSPs by jumping on a cause. More often a content producer or community manager is just trying to create good content about something they care about.

In this case, BMO seems to have done things right. They earned the Legion’s support by donating $50,000 to The Royal Canadian Legion Dominion Command Poppy Trust Fund. According to its press release about the initiative, BMO has been ”the Official Bank of the Canadian Defence Community since 2008.” And the social media posts that get sent out on participants’ social media accounts do not mention the bank.

But here’s the thing: When it comes to branding around sensitive events, nobody cares about your intentions. It’s all about perception.

So far, the reaction to BMOs campaign has been muted. Two hours before the 11am EST, about 2,500 people had pledged their support. And aside from the comments on my Facebook post, there’s not a lot of negativity around the campaign in social media.

That might mean BMO has handled a sensitive topic the right way. Or it might mean the bank is just lucky. Remember that controversial 9/11 post from AT&T? A year earlier, the telco published a nearly identical post. The first time, the post garnered only positive feedback. A year later it was seen as a huge #socialmediafail. It only takes one loud and angry influencer people to build a bandwagon others will quickly jump on.

Here are three tips to help your brand avoid the minefields that surround tragedies and commemorative anniversaries.

  1. Develop a process for going dark. Canadian brands shouldn’t post in social media at 11 o’clock on Remembrance Day (and don’t forget other time zones!) But what if there’s a school shooting or a plane crash? If you tweet about your snack food and everyone else is talking about a tragedy, you’ll look insensitive and completely out of touch with your customers.
  2. Be the most cynical version of yourself. Of course you know your intentions are good. But if you were an outsider who already had reason to be skeptical about your brand, what would you think? As I learned in journalism school, if you’ve got any doubt, leave it out.
  3. Hide your logo. If it ever looks like you’re trying to brand a cause, you’re doing it wrong. Your company name should be minimal and your logo probably shouldn’t be shown at all.

Keith McArthur is founder and chief storyteller at Outfront Strategic Storytelling. He helps great brands discover, create and share their essential stories.

Baseball and Belonging

Bryson and me at Rogers Centre for Game 5 of American League Division Series. Oct. 14, 2015

My son Bryson and I were among the tens of thousands who congregated on Front Street after game five of the Blue Jays -Rangers division series. It was undoubtedly one of the best moments of my life.

Walking back to the parking lot, we couldn’t move more than a few steps without someone coming up to give Bryson a high five. One generous fan gave Bryson a ball he had caught at the game. Earlier, a vendor who was selling posters outside the Rogers Centre ate his costs and gave one to Bryson for free. They were strangers, but then again they weren’t. This was our tribe and Bryson was at the centre of it.

In many ways, Bryson goes through his life as an outsider. As a non-verbal 9-year-old in a wheelchair, he tends to be the quiet observer looking in from the outside. Not this time. Halfway through our walk, a jubilant Bryson let out a cheer and dozens around us joined in. Then the same amazing thing happened again. And again. For a few brief moments, Bryson wasn’t just part of the tribe, he was leading it.

Tribalism in sports tends to be viewed negatively. It can certainly lead to boorish behaviour as it did in the seventh inning when angry fans began throwing beer. But the power of sports is that it creates a sense of belonging. We are Toronto. We are Canada. We are the Blue Jays.

For four hours, the 49,000 fans at the game – and millions more watching on TV – shared a communion of emotions. Together, we were excited at returning home for a game five that seemed impossible a few days before. Together, we were worried when Texas took an early 2-0 lead. Together, we were angry when we felt the Rangers had stolen a run. Together, we were ecstatic when Jose Bautista hit his three-run home run. Together, we were concerned when Texas brought the tying run to the plate in the eighth inning. Together we were triumphant when our 20-year-old closer pummeled Texas with four strikeouts to secure victory.

Even after the game, Canadians rallied around our hero, Jose Bautista, as he became America’s villain, criticized for not playing the game the right way.

I remember an awkward teenage period where I felt like an outsider. At school, I felt depressed and lonely, but at a Blue Jays games, I was confident and optimistic. It was the late eighties and the new SkyDome was selling out game after game. I was part of it all. I belonged.

A friend of mine took his 97-year-old grandfather, a holocaust survivor, to the 14-inning playoff game earlier in this series. He’s been a fan since 1977 and never misses a game; he won’t even eat if the Jays are playing. After losing most of his family and living through unimaginable horrors as a young man in a concentration camp, the Blue Jays provided comfort. They still do.

There are no outsiders in a sports tribe. You’re in because you choose to be. This, of course, is not absolute. After a baby got hit by a thrown beer in the seventh inning, most in social media were appalled. But some blamed the parents for bringing a baby to a winner-take-all game. Babies didn’t belong in their tribe.

There are probably some who feel the same about Bryson, but for those magical moments after game 5, he felt only acceptance. Most days, Bryson has a hard time sitting in a wheelchair for a long period of time. He is scared of large crowds. And he is terrified by noise. But when I take him to Blue Jays games, none of those things bother him. A sense of calm falls over him. He is safe and secure with his tribe.

Jerry Seinfeld famously said we don’t cheer for players, we cheer for the clothes they wear.

But that’s not right. We cheer to belong.

What Mayor Ford should say

This afternoon, Mayor Rob Ford will address reports about his use of drugs and alcohol, his association with alleged criminals and a video that appears to show him smoking from a crack pipe.

Here’s what he should say:

For the past few months questions about my personal conduct have overshadowed the important business of Toronto.

And while I would love to continue doing the work the people of Toronto elected me to do, the controversy surrounding these issues has made it impossible for me to do so. It is for this reason that I have made the difficult decision today to take a six week leave of absence to deal with my personal health issues, to own up to the mistakes I have made and to clear my name related to more serious allegations. Deputy Mayor Norm Kelly has offered to step in and act as mayor during my leave of absence and I would like to thank him for his support.

I believe I am an honest man, but I have not been completely honest for these past few months

I have misled my family. I have misled my children. I have misled my mother and my brother Councillor Doug Ford. I have misled city council and the media and the people of Toronto. I have misled my faithful supporters in Ford Nation.

And for this I am deeply sorry.

I can and will do better. I am eager to return to the mayor’s office and do the work the people of Toronto elected me to do.

I also have a request to the news media. Please give my family some space during this difficult time.

There are many questions I need to answer publicly. And over the next few months I will answer all of them. But in order to do this, I need to put my health and my family first. 

After this meeting, I will be meeting with the Toronto Police Service and I will do my best to honestly answer all the questions they have for me. After that I will meet with my family to make a decision together on the best way for me to deal with my personal health issues. 

I want to express thanks to my family, my friends and my supporters.

I will now turn the rest of this radio broadcast over to Acting Mayor Norm Kelly so that the city can get back to business.

Race Report: Scotiabank Toronto Waterfront Half Marathon

Keith McArthur in Midsummer Night's Run
Me in the 15-km Midsummer Night's Run on August 20

I’ve been running off and on for almost 15 years. I’ve run a bunch of 5km and 10km races over the years, and even ran a half marathon about eight years ago.

But with work and family responsibilities, my off-and-on running had become mostly off. My bathroom scale reminded me of this fact when I weighed in back in July.

So I decided to get serious about running again, and set a goal of running at least four times per week for a month. Within a few days I was hooked on running once more. My mind and body craved it on days I didn’t get out.

Before long, I registered for two runs: The Midsummer Night’s Run (15km) on August 20 and the Scotiabank Toronto Waterfront Marathon, which I ran yesterday.


Before this summer, I’d never really focused on speed. Two things changed that. First, I now use the Nike+ GPS app on my iPhone, which keeps track of my route and gives me updates on my pace at regular intervals. It also auto-publishes my time and distance to Facebook and Twitter at the end of each run.

This brings me to the other reason for my need for speed. I received the this tweet from one of my followers (I don’t know him) after the pace from one of my runs was auto-posted onTwitter:

“You should learn to run faster before your brag about it to the world. #advice #slowmotion

That comment made me angry that somebody could be so rude, but it also made me angry enough to want to get faster. So I started working on my pace. I improved from the awful 7:30/minute pace I started with earlier this summer — to the 6:20 pace I ran for the Midsummer Night’s Run — to the 5:30 pace I managed over 10km one week before race day.

The Race

My original goal was to finish in less than 2 hours, 15 minutes. But after my speedy 10km the week before, I started imagining I might actually be able to complete the marathon in under 2 hours.

My goal was to try to do the first 10km at a 5:40 pace, then assess whether I could keep it up for the last 11km. Unfortunately, the GPS on my Nike+ app failed for the first time and I had to do some math along the way to keep track of my pace.

I spent most of the early part of the race passing other runners. Whenever someone passed me, I imagined I was attached to them with an invisible tether and I ran behind them at their pace for as long as I could.

By the time I hit the 10km mark, I knew I was ahead of my goal and still had a chance to finish under 2hours.  By 15km, I was feeling strong and knew I could do it. Then at 17km, my legs felt like they had nothing left to give. But I pressed on. But at 18km I started feeling dizzy so I drank some Gatorade and slowed my pace. I still managed to cross the finish line at 1 hour, 56 minutes and 15 seconds. That’s a 5:30/km pace, which I was very happy about!

The Medical tent

Others have commented on this already, but the finish line was very poorly organized. Instead of being able to cool down and loosen up, runners were forced to stand still for up to an hour and a half while they waited to claim their race bags. Standing in line for more than half an hour, on top of my light-headedness, led me to pass out and fall down hard. When I came through, I was surrounded by runners offering me water or bananas or Gatorade. I said I was ok and stood back up. Then I passed out and fell down again. When I came through the second time, I heard someone screaming for a medic.

I was scooped off the ground, placed in a wheelchair and wheeled to the medical tent. I spent an hour and a half in there trying to keep warm while I lay on an incline so the blood could flow back to my head.

By the time I got home I felt much better. And today, my legs feel strong.

As I was driving into work on this morning in the glow of autumn sun, I was thinking how good it would feel to be out  running again. Not another 21.1 kilometres for a little while. But there will be more long runs in my future. Maybe next year I’ll even attempt the full marathon.