The better side of the internet

Companion IBD FB Live

I spend too much time online. Part of it is because of the nature of my job as a communications coordinator. I have to at least dip into social media and know what’s happening in internet culture so I don’t make the organization I work for look like it’s trying too hard to appeal to the young people. But I do spend plenty of time on the internet for fun, to pass time in the bathroom (thanks, pelvic pouch), and to give myself license to distract my mind with happier, albeit sometimes unrealistic, thoughts.

The internet is teeming with vitriol. People take to Twitter, Facebook, YouTube, and their own blogs to just act behave like cunts. Unproductive, resentful, whiny, confused cunts. And those cunts cross hail from all sorts of political leanings, genders, races, cultures, and ages. If there’s something humans have in common, it’s our ability to be utter cunts.

At the same time though, we have within us the ability to not be cunts. In fact, I might go so far as to suggest people can actually be decent and tolerable individuals, even on the internet. In this last year, I had the good fortune to meet a handful of people who are definitively not cunts, and who I wouldn’t have found if not for the internet. I thought it would be cool to share some little stories about them as a reminder, perhaps for myself more than anyone, that when you engage with new people, digitally or otherwise, a whole lot of good can come out of it.

Super Scots

Craig Easton was professional footballer who was capped 22 times at the Under-21 level for Scotland’s national team. A few years back, when I was writing more angst-ridden blog posts about my colectomy recovery, Craig commented on one of them. That led me to look at his blog, which featured some great pieces on football shirts. We had sporadic interactions on Twitter since that initial contact, sometimes of the subject of kit design, sometimes on football in general, and sometimes on my health.

This spring, as I was scrolling through Instagram – by this point, we were following each other there too – I came across some stunning shots that Craig had taken of Vermont. After some back and forth compliments and comments, Craig let me know he was travelling through New England and would be making his way through Toronto.

I wanted to ask him if he wanted to meet in person, but I was worried. I didn’t want to disrupt his vacation. I didn’t want to assume that he considered me a friend based on some online conversations. Luckily for me, Craig took the impetus suggested we grab a beer when he came to town.

We decided to meet at Bellwoods Brewery. On a busy, sunny Saturday afternoon, I managed to get a table for three – myself, Craig, and his wife, Laura. I sat alone at the table for 10 minutes before ordering the cheapest beer on the menu. I sipped my beer and waited another 10 minutes. Surrounded by Toronto’s hipster community, I felt out of place. But when Craig appeared, and smiled through his brown beard dotted with specks of grey, I felt at ease. We shook hands, and he introduced me to his wife, Laura.

Craig and Laura told me about their life together, about Scotland, about jobs they’ve had, and their road-tripping through New England. We talked about football like old friends, and I talked about my colitis as though it needed no explanation, because it didn’t.

Our time together felt comfortable and fun, and that really comes down to the warmth and sincerity that both Craig and Laura radiate. I’m still amazed at how we managed to cross paths and meet in person, and I feel a deep gratefulness that we did.

The Haligonians I wish I knew sooner

I lived in Halifax for two years, and I was lucky enough to make a few friends in my time there. But it was after I moved back to Toronto, and after I made more online connections in the inflammatory bowel disease community, that I found Margaret MacLennan and Emma Chapple. I made my first trip back to Halifax last summer since I left in 2007, and in addition to catching up with some old friends and colleagues, I was able to meet Margaret and Emma in person.

On a warm July afternoon, Margaret met me outside the hotel where I was staying, and we walked downtown to the Foggy Goggle for lunch.

“Hope you didn’t mind walking all this way in your heels, Margaret,” I said after we took our seats on the patio.

“Nah, I dress like an out-of-work hooker most days,” she replied.

That reply really sums up Margaret. Not because she actually dresses like an unemployed streetwalker, but because she owns her style and her opinions and ambitions with a mix of confidence and humour. Over beers and fancy pub grub, we talked about colitis, surgery, ostomies, and politics.

Margaret gets a lot of slack for her opinions, but you have to respect the fact that she expresses them openly, her real name stamped on her videos and tweets and posts, and never hides behind an alias as so many people online do when they don’t have the balls (or lady balls) to reveal their real identity.

A couple of days later, I met up with Emma over coffee. We first got in touch through Companion IBD, an online magazine that we both wrote for. Being familiar with each other’s stories, talking to Emma felt less like meeting someone new as much as talking to a friend. Still, we were able to learn more about each other through telling stories about surviving hospital stays, sharing our opinions on standards in journalism, and pondering Halifax’s condo boom.

In a weird way, I wish I had been diagnosed sooner, while I was still living in Halifax, because maybe then I would have been able to meet Emma and Margaret earlier and share more laughs and drinks and empathy with them.

Neighbours to the south

Early in November, I got to take part in an ulcerative colitis patient panel in Atlanta. The researchers who held the conference wanted to gain insight into what it was like to live with UC, and what it took for (most of) us to opt for surgery to remove our colons. In turn, we learned more about some of the emerging treatments for the disease. I received the invitation after being recommended for the panel by Brooke Bogdan, who I owe countless thanks for bringing me further into the Crohn’s and colitis online community when she invited me to be a contributor for Companion IBD.

In Atlanta, I had the good fortune of meeting Brooke in person, as well as Companion’s other regular contributors, Kristin Harris and Gaylyn Henderson. We almost had the complete Companion team together; only Emma wasn’t available. Even so, Brooke, Kristin, Gaylyn and I hosted a Facebook Live chat from Brooke’s hotel room, where we had the chance to talk all things IBD. We couldn’t have carried out the broadcast without the help of Jacqueline Lopez, another lovely, colon-free, colitis conqueror who I met for the first time at the patient panel.

Brooke, Kristin, and Gaylyn are incredible women. Their openness about the challenges that Crohn’s disease and ulcerative colitis bring is exactly what a public largely unaware of inflammatory bowel disease needs. They endure the hardships and push ahead in the pursuit of happiness. Kristin is a remarkably talented artist, Gaylyn seamlessly blends fashion with community organizing, and Brooke has a ferocity to her engagement with IBD issues that’s rooted not in anger, but compassion. I’m lucky to call all of them my friends.

The patient panel gave me a chance to meet a number of other IBD advocates, some of whom I had only known from our online interactions. It was hardly a surprise that Amber Elder (a.k.a Colitis Ninja) and Brian Rockwell (a.k.a. @IBDSucks) were even more personable and thoughtful in real life than they are in their online personas.

Soon after the business portion of the panel concluded, Brian and I went for a walk in Piedmont Park. I got to learn more about his family and his daughter, the work he does, and how life in the United States compares to how I see it as an outsider. He has a calmness, a pragmatism, and a hopefulness about him that I wish more people would embody, and I wish more media outlets would utilize when they present impressions of the American people.

My trip to Atlanta only lasted three days, but I came away from it with memories I’ll always hold close, new connections with many more outstanding IBD-ers (too many to all name here), and stronger bonds with people who seem more real and more incredible now that I’ve been able to meet the humans behind the avatars.

There’s lots of fuckery online, from factually inaccurate memes, to conceited statements about the state of society, to angry indictments that deflect responsibility for bad outcomes to everybody but oneself. Yet if you find a way to wade through the murky mess that is Facebook, Twitter, et al. you might actually find some pretty cool people who possess the ability to make your life better, as I have.

About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

One comment

  1. Pingback: Five things I’ve learned from five years with a j-pouch | Rasheed Clarke

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: