CHOOSING VISIBILITY

CHOOSING VISIBILITY
A Runner’s Story of MS, Identity & the Power of Being Seen
Exclusive Interview with Matt Kenny
Featured in 'Innerviews'
Hosted by Allié McGuire

​Visibility can be a risk, especially when your body and your identity are both subject to scrutiny. For Matt Kenny, choosing to be seen as a runner with MS and as a gay man in sport has never been about making a statement, but about telling the truth. This conversation explores how courage is built mile by mile, choice by choice, long after the finish line fades.

ALLIÉ: Matt, You and I both had a moment where life split between before and after MS, and suddenly the future has to be rewritten in real time. What part of who you thought you were did you have to grieve and let go of after your diagnosis?
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MATT: I was invincible. I couldn't be touched. This was for other people. I had been through an immense amount of struggles, but I didn't recognize them and I didn't allow them to truly come in and hit me. I would take them, file them away, and keep going. Just keep going. At that point, as a gay person in the world, without a disability, I had trained myself to survive, not thrive.

The MS diagnosis came for me during COVID, during lockdown, during unemployment at that time. I'm Canadian by birth, the borders were closed, and I hadn't seen my family in a year or two. The bricks that were stacked on top of that, the grieving that came from it, was the unknown.

It was what I was being told the future would look like.

It was this feeling that everything you thought you knew about yourself and everything you believed about your life was gone. You're almost grieving your future, the future you thought was going to be yours.

And in a split second, in this moment, I was diagnosed via Zoom. Talk about the most bizarre way that could happen.
I was in a Marriott hotel room, and I remember looking at the wall and seeing this mass-produced photo that was in so many other rooms and thinking, this isn't how this goes. This is not how this goes for me.

I don't know if that answers your question.
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ALLIÉ: It does. Because we talk about grieving who you were, but it's interesting that you say grieving the future, the future you. I've not looked at it that way before, but I imagine that instant, with all these things piling up, alone in a hotel room.

MATT: Do you want to know the best part?

It was in a hotel room at my 40th birthday party.

I was poolside when the call came in. They asked, "Can you jump on a call now?" I had my first margarita ready to put to my mouth, and I put it down. I turned to my partner and said, "It's Friday afternoon at 4:30. Doctors don't make this call to say congratulations.”

People had just landed at the airport and texted, "Hey, we're on our way." And I said, "I'll be there in a minute. I'm going to run upstairs for a quick second and get a diagnosis that's going to change the entire trajectory of my life."

ALLIÉ: They say at 40 everything goes downhill, but this probably wasn't what you were expecting in that round.

MATT: Hollywood couldn't have written it better. The script, the way it happened, I was like, what is happening?

ALLIÉ: That's something you absolutely could not even make up.

What surprised you, Matt, about who you became instead after the diagnosis?

MATT: He took a while to come out. The immediate person that followed was really dark. Really dark days.

I was told really bad things by medical professionals. Within the first few days I was told MS will always end in disability. Full stop.

I was told that I should start chemotherapy immediately, but no doctor could explain why. I kept saying, just make this make sense to me. Chemotherapy is cancer. Doing research later, I understand why that might be recommended for certain people, but no doctor could explain it to me at the time.

And it was COVID. Doctors were exhausted too. They didn't have anything left. I understood the parameters I was in, but I didn't see a future that resembled anything like me.

It scared me so much that I begged my partner to leave me. I said, please go. You didn't sign up for this. Please go before this gets to a place where the rest of life is ruined by this as well.
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I watched a documentary called Heal. It's a documentary on radical healing. Some of it gets a little out there, but it was what I needed in that moment.

I went to the roof of my apartment building and stared up at the sky and said, this is going to be me. I don't know how. I don't know why. I don't know how this is going to happen. But I cannot go down without swinging.

That moment flipped something in my head. They don't know me. They know their textbooks, they know what they know, but they haven't met me.

A strange power came over me.

I had planned to take my life. I didn't see another option.

The next day after that moment on the roof, I saw a sign on a lamppost that said, what you are going through is going to be someone else's survival guide.

When I tell you a power came over me, I just knew in that moment I was going to be okay.

I stopped going to the doctors. I said I would give myself three months to try things myself. If I didn't get better in three months, I would surrender to whatever treatments they wanted me to do.

For three months I read, studied, and did every single thing I could.

It was wild.

I don't believe in a specific entity necessarily. I don't believe my spirituality belongs in a book or within four walls. But to say that there wasn't a higher power that day would be foolish.

Something looked out for me and said, "We've got you."

ALLIÉ: That's incredible.

So I know what it feels like to come back to running after MS. I've been there myself with fear and hope that's just trying to keep up. There are good days and bad days.

When you run now, Matt, what are you reclaiming that MS tried to take from you? What does running give you that nothing else can?

MATT: Running feels like flying to me.

Especially after diagnosis.

MS really affected my feet. It felt like I had marbles and golf balls under them. It wasn't exactly pain, but every step felt like something pressing into my feet.

When I walked my brain would say, stop walking. You're walking on marbles.

For three or four months I had to override my brain and tell myself, you're fine. Step. Keep stepping. I also had intense vibrations in my lower body. It felt like both of my legs were tuning forks twenty-four hours a day. You couldn't see it, but internally my nerves were just vibrating. My hands were affected too and would get really tight.

When I started running again, I would tap each finger ten times so my brain had to reconnect signals. I'm not a doctor, and I don't recommend people try this without talking to their medical professionals. This was just my lived experience.

I believed if I confused my body enough it would forget about MS.
That's where marathon running came in.

I thought if I could push my body that far voluntarily, maybe MS would back off.
And honestly, that's kind of what happened. After a long run every single side effect disappears.
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ALLIÉ: We have a couple of things in common, but this is where our paths diverge… I know the vulnerability of being seen with MS, but I cannot fully know the added weight of being visible as a gay man in competitive sports, specifically hockey.

What has choosing visibility cost you? And what has it given you that made the risk worth taking?

MATT: Being gay was the thing I was most ashamed of in my life.

I was a closeted hockey player in a hyper-masculine environment. In Canada, hockey is next to godliness. I was from a small city and I didn't see a gay person until my twenties.

I carried that shame knowing hockey would have to end for me. I played competitively and was invited to try out for a top-tier team that could feed into the OHL and AHL. I don't know if I was good enough to make it, but I had the opportunity.

During the first practice someone casually used the slur against gay people. It wasn't directed at me, but I heard it.
By the end of that ninety-minute tryout I had decided I was out.

All of that came crashing back years later.

The funny thing is that the one thing I was most ashamed of became the thing that set me free. The world has connected with my story in ways I never expected. And because of that, people like me get a chance to be seen and celebrated in a way I thought I would go to the grave hiding.

ALLIÉ: What weight must have been lifted.

MATT: When I posted my first social media post I woke up three times that night to delete it. I felt sick to my stomach.
Two million views later, my brain still can't process it.

Decades of trauma and compartmentalization came crashing down. The young kid inside me was looking around thinking this isn't how this is supposed to go. You're not supposed to be safe. You're not supposed to be celebrated. You're waiting for the other shoe to drop.

ALLIÉ: People often celebrate courage at the finish line. But I suspect your bravest moments rarely came with applause. Can you share a moment when staying true to who you are felt harder than any race you've ever run?

MATT: It actually was a race.

Just over a year after diagnosis I decided to run the Toronto Marathon. I hadn't shared my diagnosis with anyone. Only my partner and my parents knew. I kept it secret for a year. Mostly because of shame, but also because I knew people would come at me with stories I wasn't ready to hear.

​Someone once told me they knew someone with MS who had to be lifted into bed by a neighbor every night but still lived a pretty good life. I didn't know what to do with that.

So I connected the Toronto Marathon with beating MS in my head. If I crossed that finish line, I could beat it.
That doesn't correlate scientifically, but in my head it did. I ran it with terrible preparation. I ate a salad the night before because I thought that's what healthy people did. I finished in 3:58.

There's a photo of me at the finish line with pure pain and grit on my face. In my head it was me beating MS. Nobody cheering knew what I was carrying through that race.

An hour later I posted my story online. There was an outpouring of love.
And I think it reframed how people look at disability.

ALLIÉ: So if someone living quietly with MS or quietly with their identity is watching your story from the sidelines right now, what do you hope they understand about courage?

MATT: You are not alone. You are not alone. You are not alone.

The shame is of no use to you. Put it down.

You're about to embark on a new story you don't even know about yet, and that shame can't come with you. I read a quote recently that said the reason something feels so heavy is because you weren't supposed to carry it this long.

You will lose people along the way sometimes. They may not be ready for you to be your full self.
But you will also find ten times more beautiful people.

No matter how alone you feel, please believe me that you are not. ∎

Find & follow Matt on Instagram: ​@matt__runs