September: Learning Empathy »

Instead of running RSS sponsorships this month, I’m raising money in support of St. Jude Children’s Research Hospital as part of Childhood Cancer Awareness Month. Click here to learn more and donate.

In the nearly seven and a half years of being the parent of a child with cancer, I’ve heard this line a bunch from people sharing their own story of pain or grief:

It’s nothing like what you guys are going through.

I know what people mean when they say this. They suddenly remember they’re talking to someone who was told their baby had a brain tumor and feel like whatever they are saying isn’t valid in light of my situation.

For a long time, I struggled with this type of conversation. Watching someone fumble with a sudden pang of guilt — maybe mixed in pity — would make me angry. I can’t give a shit about your problem,” I would often think. Don’t you know my rock is way bigger than yours?

That response proved to be a pretty good way to damage my friendships. It took a lot of time — and therapy — to realize a simple truth:

Suffering exists on a scale.

For example, I have a friend who was telling me about his child breaking her arm on a playground. They had to rush to the hospital and have it set. It sounded truly traumatic, then he stopped himself short.

It’s nothing like what you guys are going through.

The truth I’ve come to learn is that for him, and for his family, that day on the playground was terrifying. It was the scariest moment he and his wife have had as parents. Seeing their daughter in pain and in danger was traumatic.

Just because my family’s worst day was more dramatic or more serious doesn’t mean I have the right to discount his family’s worst day. That’s taken time to learn, and it’s something I still have to think about when I talk with people.

I don’t know how my family’s story will end. I can’t tell you what the future holds, but I know the last seven and a half years have changed me. Some of it for the better; a lot of it not. Extreme situations have a way of boiling a lot of life away, leaving just the raw core. It’s hard, but it’s a chance to look at who we really are, and, hopefully, work to improve.

No matter what’s going on in your life, I encourage you to take a step back and think about empathy. It’s not a natural response — at least for me — but one I’m learning, day by day.

Instead of running RSS sponsorships this month, I’m raising money in support of St. Jude Children’s Research Hospital as part of Childhood Cancer Awareness Month. Click here to learn more and donate.

Photographic Memories 

I’ve always had a strong sense that places are important. I’m not a particular sentimental person about some things, but my strongest memories are very often associated with specific locations.

I wrote about this five years ago on this very blog, when I trespassed in a hospital due for demolition visited an important part of my family’s history.

(Just a little warning: that post is intense. I couldn’t re-read all of it.)

I’ve thought about this part of me many times over the years.

Several years ago, my brother and I were north of the city, not far from the small, country elementary school we attended. I badgered him into letting me stop and take some pictures. He didn’t understand why I wanted to do it, but I was driving, so we did it.

When I left my job with The Salvation Army in 2013, I walked through the community center I helped design and built, taking tons of photos, trying to soak it all in while I still had an employee keycard. It took a couple of years before I could go to an event or work out up there without weird emotional tugs.

I’ve thought a lot about it over the last month or so.

Recently, my alma mater started tearing down the dorm I lived in for two years with one of my closest friends. It wasn’t a nice building, and I really only slept there, but I’ve been cutting through campus while out running errands to keep tabs on the demolition. I’ve stopped to take some pictures, and was disappointed to realize I took very few of our room while we lived there.1

Last week, my wife and I purchased her grandmother’s house, after selling our previous one. We moved our family of five into a home where my mother-in-law and her siblings grew up.

There’s a lot of history in this house, but it’s not my history. I’ve watched Merri experience some of the things that I thought were unique to me in our relationship. Several times, I’ve caught her just looking into a room or out into the yard, and I know she’s thinking about the time she spent here as a kid, or when she lived here in college.

I’m sure that with some time, I’ll feel the same way about this house as I did our previous one.

I don’t know what my point is in all of this. It’s just been on my mind, so I thought I’d share it, and encourage you to take some photos of your surroundings. One day, you may want them.

  1. This has made me realize I really just missed the age of the ubiquitous camera in school. There are probably a dozen or so decent photos of me in high school; kids today take that many before lunch every day. I envy them, to a degree. 

One Year Indie 

One year ago, I published this:

I’m leaving my 9-5 job to work on Relay FM, 512 Pixels and my freelance business full time.

The last 12 months have been nothing short of amazing. If you’ll forgive the introspection, I’d like to talk about what I’ve been up to for the past year.

In the fall, I attended both Release Notes and XOXO Festival. My Relay FM co-founder Myke Hurley gave the keynote address at Release Notes, and killed it. It was great to meet so many people in the indie design and development field outside of Twitter and WWDC.

XOXO was special for some very different reasons. It is part conference, part festival, and 100% awesome. XOXO was the first event I attended after going indie, and it was really great to have so many people (outside my regular circle) who make things for a living share their stories.

I’m still working on my fall schedule, but I hope that I can make both trips again this year.

* * *

I started 2016 with a renewed drive to work on 512 Pixels. I’ve been writing more, and added the YouTube channel. It’s hard to believe it, but this site is about to turn eight years old, and I finally feel like I’ve finally hit my stride with it. I’m more comfortable writing what I want to write than I ever was when I thought 512 Pixels was my ticket to self-employment. Now that it’s just part of the pie, I am enjoying a new sense of freedom here.

* * *

In April, my family and I flew to Maine, and spent a week at Camp Sunshine, a getaway for families with children who have catastrophic diseases.

The week we attended saw a wide range of diagnoses. We were the only brain tumor family,1 but we met parents of kids with Down syndrome, sickle cell disease, Wilms’ tumor and more. It was incredible to hear how many of their stories parallel ours. Families with sick kids all experience similar types of bullshit from school districts, challenges within the medical system and their own internal stresses.

The trip really opened my eyes that families like ours with pediatric cancer diagnoses aren’t alone in the things we deal with that most people will never encounter.

Camp Sunshine marked the first time since our Make-A-Wish trip in 2013 that I took more than one day off. I spent five days almost completely offline, and completely out of my work email and task manager. I came back recharged and refreshed, not realizing how overdue a break had become.

* * *

Relay FM continues to fire on all cylinders. We host a lot of shows, and I’ve spent significant time and energy behind the scenes this year getting the network to scale more efficiently on the business and technology fronts.

In just a few weeks, we will be celebrating Relay’s second birthday. We have a lot of fun stuff planned for our members, but I’m most excited about the fact that Myke will be flying to Memphis. We’ll be spending a week together hammering out some work that I think is critical to where we want to take the business.

* * *

When you work on something you love, it’s easy to lose track of time. I’ve missed family meals, lost sleep and been a bad friend, all in the name of work. Outside of a few small freelance projects, very little of what I do these days is directly billable by the hour, but there’s a lot to get done. I fear that if I stop pedaling, the whole thing will lose the momentum it has.

Of course, that’s baloney. Relay FM is a lot bigger than just me, but more importantly, having time and flexibility for family is one of the big reasons I made the jump to independent life in the first place.

I’m not saying I’ve completely blown it in this regard. I see more of my kids and wife than I ever did when I had a 9-5, but I’m working to make this more intentional. Very rarely do I schedule family time during the work week in advance, and that’s something I am working on changing.

* * *

So, what does Year Two of self-employment hold? I’m sure it’ll be more Relay, new projects, several more old Macs and some new adventures. 

I’m ready.

  1. Speaking of that, I’m happy to report that Josiah’s recent MRI was stable. For the first time in seven years, we’re moving from a six-month MRI schedule to a nine-month one. It’s a big step in the right direction! 

To Yida »

My brother’s non-profit Operation Broken Silence has worked in Sudan and South Sudan for many years. They just spent two weeks in Yida, a refugee camp that has swelled to hold 70,000 who have fled the genocidal acts of Sudanese dictator Omar al-Bashir. The purpose of the trip was to film a documentary about life in the camp, in the shadow of the unspeakable crime of genocide at the hands of the Sudanese government.

Mark Hackett, meeting with leaders in South Sudan

Here’s The Memphis Flyer’s Chris McCoy writing about the trip:

“Yida is sort of a microcosm of what’s wrong with Sudan right now,” [Mark] Hackett says. “No schools, people who don’t have jobs, people displaced by the conflict. We wanted to go to Yida to get eyewitness interviews about what’s happening. But it’s also where most of our classrooms are. In Yida alone, it’s estimated that there are 20,000 to 25,000 kids. We’ve only put 700 of those kids back into a classroom.”

The teachers Operation Broken Silence supports are all local. “Before the war started, there were about 200 schools in the Nuba Mountains. Now there are fewer than 100, and none of them are functioning anywhere close to capacity. The schools that were destroyed, almost all of the teachers escaped, alongside the kids. They’re the only ones who understand the cultural context, and they understand what these kids have been through, because they’ve been through it, too. They’re better than any teacher we could bring in.”

I’ve said it before, and I’m sure I’ll say it again, but I could not be prouder of Mark and the work he and his team are doing. In a world where people are jumping up and down about headphone jacks, it’s good to be reminded that there is some serious shit in the world, and that people are busying trying to make it right.

‘Can you take our picture?’ 

Visiting the Apple Campus

During WWDC last week, I took a drive down to Apple’s campus with CGP Grey, Federico Viticci and Myke Hurley. Ticci needed to pick up an iPad for his iOS 10 review and everyone wanted to get a photo in front of 1 Infinite Loop before Campus 2 opens.

Once we were in front of the sign, we asked two Chinese men who were there as well to take the photo you see above. They didn’t speak much English, but they were willing to help us out, taking several photos of our field trip.

I offered to take their photo to return the favor. When the older man handed me his iPhone 6, I couldn’t help but notice it was set in Chinese. While that in and of itself isn’t remarkable, it’s the first time I’ve used an iOS device set in any language other than English. I snapped a few photos of them, smiling under the flags just as we had. They reviewed the photos, thanking me for giving them a hand.

Our entire interaction took place in just a couple of minutes, but it’s really stuck with me. It’s easy to think about the community surrounding Apple being our favorite group of writers and podcasters, but it’s far bigger than that. I don’t know if those guys were attending WWDC, or lived in the area and were just checking Apple’s campus out, but clearly they were excited to be there. Had we been able to communicate any more deeply, I’m sure we could have compared thoughts on the keynote and shared our hopes for Apple’s platforms in the future. We probably aren’t all that different when it comes to our interests and obsessions. That’s pretty cool, and I enjoyed the reminder that all around the world, people are nerdy about the same things.

Mother’s Day 

For many women (and families) Mother’s Day is a heartbreaking occasion. For others, it’s a day of joy. In our household, I think it’s a mix of both. 

That photo is from the weekend our son Josiah was diagnosed with brain cancer. That Sunday, he was baptized in his hospital bed. So many people from our lives showed up, the crowd spilled out into the hallway, with people lining up to visit.

It was Mother’s Day 2009. 

This Mother’s Day, Josiah is still with us and is doing very well. He still has cancer, but has been off chemotherapy for several years. A check-up MRI is scheduled for this week, but assuming there’s no growth, then he’ll be back to being a first-grader and playing with his younger brother and sister. 

Through it all, I’m reminded daily how amazingly strong and caring my wife Merri is. She’s the best partner I could ask for in life, and my children are incredibly blessed to call her Mama. 

That doesn’t mean today is easy. The anniversary of Josiah’s story beginning is always hard. 

Pain and joy are often intermingled in life, but in those moments, there’s potential for grace. I hope you all can experience that today as we have.

On doing your own thing »

Earlier this year, a friend (and former coworker) of mine named Zac jumped off the ledge into his dream of opening a men’s boutique:

If you told me on January 1, 2015 that my year would consist of opening a store, running a brand, going to NYC, and going into debt I would have made a bet—and ended up going more in debt. If you told me that on December 31, 2015 that it would all be over, I would think you were the ghost of Christmas future that doesn’t know what he’s talking about.

His post is all about what he’s learned (and lost) through the experience. Although Zac and I’s companies are very different, there’s a lot in this post that resonates with me, and will for anyone doing their own thing.

Documentary Films 101 »

Mark Hackett — hey, brother! — writing about what he has learned in making films about Sudan:

If there’s one thing every human being in the world has in common, it is our collective love of stories and storytelling. The world’s most ancient texts are filled with sweeping stories of early civilization. Today, we can’t get enough of big-budget films, post-apocalyptic books, and real-life stories of ordinary people becoming heroes. We’re wired to come together around those who who create, write, and show.

A good documentary film does a lot more than simply provide the facts. A good documentary film will also provide a story. An excellent documentary film will have you so riveted to the story that you barely even realize you are learning a lot about the social issue the filmmaker wants you to focus on.

So, how do you tell a good story?

Whole-Ass One Thing 

While I worked part-time at my previous gig most of July, today marked the start of my first week working for myself.

While I didn’t get caught up on my to do list, it was great knowing that tomorrow morning, I’ll drive to the office space I share with my brother, record a podcast and jump right back into my projects. I’ll do all of this, during the working day, without stealing time from a J-O-B job.

It’s profoundly surreal, but incredibly freeing, to be focused on my writing and podcasting full-time. There’s still lots to work out with budgets and time management and extra things I could take on, but it’s all under the category of my work. That’s what makes it so much fun, despite the unknowns.

On NBC’s genius show Parks and Rec, Ron Swanson gives some great advice about splitting time and attention to Leslie Knope:

Don’t half-ass two things. Whole-ass one thing.

I’m in, Ron. Let’s do this.

Six years and about a billion miles 

As I’ve written about before, I have a very real strong tie to locations in my memory. Even as a child, nothing would trigger nostalgia like a place.

While I didn’t share it here, I’ve spent most of the year in and out doctor’s offices after a period of spending several nights a week throwing up and losing a bunch of weight. I’ve embarked on a gluten-free and diary-free diet, which has helped greatly, slowly clearing up all of my symptoms.

Of course, before arriving at this answer, I underwent a handful of diagnostic tests at a hospital about 15 minutes from our house. It’s the hospital where both of our sons were born, and where we went after losing a pregnancy in the fall of 2013. I remembered and thought about those events while parking, but as I was being walked down the hallway, the nurse and I passed the ultrasound suite where Josiah’s tumor was first discovered:

The day before, a routine checkup had ended in a conversation of “drive to the hospital. Don’t stop to go home, don’t stop for lunch. There will be doctors waiting for you in the ER.” Needless to say, we were shaken, but not until an MRI and that conversation on that creaky plastic couch at Lebonheur Children’s Hospital did we know the full extent of just how bad things were.

That checkup was six years ago today.

Before we drove across town to the ER, I had a few minutes to step into the lobby and get in touch some people. I called our parents and siblings, whom met us at Lebonheur. I texted my boss something vague, but that day would be the last day I worked for a month.

While May 8 will always be burned into my family’s collective DNA, Josiah’s disease doesn’t rule our lives day to day, like it once did. It’s been four years since Josiah stopped chemo, and just last week, had an MRI that shows his brain tumor remains stable. It’s still there — he’ll never be “in remission” — but it hasn’t grown. He’s finishing up kindergarten and, for the most part, is a normal six year old.

None of that seemed possible while sitting in that little room.

The years have been hard, and the mileage has been harder, but we’re intact. I never thought we’d get this far. The truth is that Josiah lives on the edge of what his doctors know about his disease. Any day, any MRI, any seizure could throw us back into the trenches. Living with that weight is hard, but we’re learning how to manage it.

I don’t know how many more miles are on this road. I don’t know this story ends, but for now, I’m trying to treasure every moment I can with Josiah and his siblings.