What's The Matter With Me? Podcast

I have multiple sclerosis, trigeminal neuralgia and I made this podcast to share what I’m going through.

In this episode, I participate in Walk MS as a walker and also as the MC. Later, I post to Reddit and it goes pretty well, even though I use the wrong word.

Show notes

Welcome to What’s the Matter with Me? Season 3, Episode 8: “Walk MS MC.”

Coming up in this episode: last weekend I did Walk MS, I had a fundraising goal, and I raised more money than that. It was awesome. There were a lot of people with MS. I was the MC there. I stood on stage with a microphone. I posted on Reddit again, but I used the wrong word. Stay tuned.

My name is John

I’m 40 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I’m going through.

The What’s the Matter With Me? Podcast is an MS podcast and it’s also about other things. Past episodes can be downloaded on Apple Podcasts or from WhatsTheMatterWithMe.org, or wherever you get it. I’m not a medical professional. Don’t take this for medical advice and, if you need medical advice, ask your healthcare provider.

But first, let’s recap and give shout outs

I want to give the shout outs first. Shout outs to Kalim and shout outs to Mary and all the other people, Rusty, all the other people I’ve come into contact with in the last couple weeks about What’s the Matter With Me? You are listening to the What’s the Matter With Me? Podcast and it’s kind of about multiple sclerosis and other things, right?

Last episode recap

It was kind of a bummer birthday complaining episode, but, I don’t know, it must serve some purpose, right? Let’s just hope. It was like 6:15 in the morning, I was hanging in the sky chair outside my house, and I just kind of recorded the episode. I was just flowing. So, check it out. It’s kind of weird only in that weird way that we could do it here at the What’s the Matter With Me? Podcast.

Last weekend I did Walk MS

It was my first time. Walk MS is put on by The National MS Society, which is the largest fundraiser for MS research. The National MS Society Walk MS, they do these in different cities.

So, I had to MC. I was the MC. They contacted KFJC and they were looking for an MC. I was like, “Well, I guess I’ll do it. I’m the guy with MS around here.” I raised money.

They had me pick a goal

A fundraising goal, and I’m not really that kind of person, right? Or I don’t think of myself as that kind of person. I don’t even know what that kind of person’s supposed to be like, but I just don’t picture myself as a big fund raiser. Otherwise, I’d have money, I think.

They asked me to pick a goal. Another thing I’m not really great at, but I was just like, “Okay, dollar sign 1, 2, 3, 4. That’s my goal.” It was an easy goal. It seemed like a lot of money. The first thing I tried was 1, 2, 3, 4, 5, but that’s $12,000 and it would have made me like the number two fundraiser for the Silicon Valley Walk MS. I was like, “Maybe that is too much. So, 1, 2, 3, 4.” I thought that was obtainable sounding. That wouldn’t put me in the top five or whatever.

They had the whole thing, like they had an automatic set up. They said, “Just share it on Facebook,” and they kind of had it all made out for you, and so I did that. Then I kind of wrote a couple things and posted a few. I customized the template, I guess. Some of my friends– I’ve got to say, I think something like 23 or it must be over 25 people supported me. That’s so many people. And then they gave all together, they gave like $1,700. So, they exceeded my kind of somewhat admittedly kind of arbitrary goal, but they exceeded it and that’s awesome.

I went to the event and the event in itself was awesome

There’s a lot of people with MS there, lots, like hundreds. Maybe 700 people registered. I think that there was also teams. There were many teams of like as many as a dozen or more people walking. They had tshirts and they’d be like, “Team Bryan” or “Team Indra” or whatever, and they would all be walking, family and friends. It was kind of cool.

I was just there with Ras Babo, DJ Ras Babo, my man. He was there. We were just hanging out. They gave us microphones, they gave us a bunch of announcements to make, and we were off running. It was wonderful. We were MCs.

It’s kind of like this, right? But I was on stage in front of people, so it was like 100 times more awkward. But it’s okay. I’m good on stage. You just grin and make it happen. That’s on stage. Don’t look down and away and frown. That’s not what people need. Look straight at them and grin. Look over their heads if they freak you out. That’s cool.

Brutal landscape

It was cool all in all. I mean, the walk, it was a cool experience. But it was also kind of interesting because the actual physical geography of the walk, we were in downtown San Jose walking a Guadalupe river trail, which is a bike trail, a running trail, that goes through this kind of brutal, brutalist, giant cement spaces of downtown San Jose. But it has next to the path are like lots of grape vines, like tons of them. It’s kind of like downtown San Jose has been home to hobos for a long time, since the great depression. And so, you can imagine these hobos planting grapes and making like pruno. It’s very evocative landscape.

Also, for me, as a teenager I would go to the drum circle like on Wednesday nights in downtown San Jose. They would have it in front of the Tech Museum or sometimes in these concrete spaces next to the creek. And so, it’s kind of dirty there. I would say it’s filthy, but we walked all through there and they had cleaned it up. Somebody had power-washed it recently.

And so, we were walking through this space and I was in these spaces that I hadn’t been in since I was a teenager going to the drum circle. So, at the same time that I was having this together MS experience, I was also having this very solitary experience remembering my friend Mike and the other people at the drum circle and the weird scenes. It really took me back.

Weird times at the MS Walk

It was a lot of fun actually. Getting to see other people with MS and looking at them, all their families, and all their supporters, and just looking them in the face, you know? And having them look me in the face. It’s awesome. We’re just like, “This is us.” We are ourselves and that’s something that is powerful. You get power from that for sure.

I really enjoyed the Walk MS and I would do it again just to be in those weird brutal spaces of memory

Oh, the brutality of high school, of being a teenager in a city like San Jose with giant concrete walls, expanses with dirty rivers with solid waste floating in them, traveling through downtown San Jose with a pruno of 1930s hobos cascading down the hillside. It was quite beautiful actually.

About every 50 yards you would see kind of residue of encampment because San Jose has a real homeless population, a long standing homeless population. It’s a part of downtown San Jose and no one’s really figured it out, but in a way there’s just these giant concrete spaces and a river flowing through. A creek. It’s not a river. It’s a filthy creek flowing through downtown San Jose in the brutal spaces of memory. Taste the pruno.

Man, that was kind of intense. I recorded that yesterday, so coming in here tody and checking it out I’m like, “Whoa, I’m an intense dude.” Anyhow, taste the pruno. I don’t what that’s all supposed to be about. That’s kind of yucky, right? Little bit yucky.

I posted on Reddit

… and you know I have a checkered past with that, but it kind of worked. Made something work. I made a post. I called it Disability Porn. It was just a transcript from episode six, Social Isolation. Just a little bit, because I wanted to share what I was saying, but I didn’t want to be branded a self-promoter.

Actually, I would like to access this community on Reddit of the multiple sclerosis sub-Reddit with what I’m saying here. I’d like to also be able to say it there, but it gets complicated.

I made a post on Reddit called Disability Porn and it’s a transcript from episode six Social Isolation. It says, “Disabled people are often a focus for other people’s projection and we’re trotted out to be inspiring. Isn’t it inspiring that they attempt to do something? I mean, the bar is insultingly low. Isn’t it inspiring that they look at us and smile? Oh, they smile just like us.” And then I finish up. I wrote, “That’s what they call disability porn. Where you’re watching it and you’re like, “Oh yeah, bless their hearts.””

I got a lot of responses

Like 28 people responded. Some people, a lot of people, were kind of bummed out that I called it Disability Porn because they were like, “Oh my gosh, I was looking for something totally different.” Or they were like, “Dude, it’s called inspiration porn,” which I kind of … I must have known that, but I messed it up. Like, big surprise.

Anyway, you know, some people had something interesting to say. Like this lady Claire wrote, “Gosh, I’ve always hated it and the thing I hate most is that sometimes my own family brings it up. They’ll find someone with a worse disability than mine and go on with the whole look how inspiring he or she is thing. That’s not inspiring to me at all. The fact that random stranger is presented as an inspiration to me just because of their disability makes me feel humiliated and also feels insulting to the stranger, too.”

I mean, like thoughtful responses. I think we could analyze that. There’s a lot there and it’s cool that I made it work. I made the multiple sclerosis sub Reddit work for me, but I called it Disability Porn and a lot of people said like, “That’s click bait.” That was the word of the day. I’m learning all these new words. Anyway, that was click bait. Whoops, I should have called it inspiration porn and that would not be click bait.

Thank you for listening to the What’s the Matter With Me? Podcast

You can find all the past episodes, there’s like over 50 of them, on WhatsTheMatterWithMe.org and Apple Podcasts, and whatever app you use, just use it. Find the What’s The Matter With Me? Podcast.


Got to give a shout out always to the worldwide universal sponsor of the What’s the Matter With Me? Podcast, Hoppin Hot Sauce.

It’s a movement. Hoppin Hot Sauce is a movement. Check it out hoppinhotsauce.com.

Thank you for listening to the What’s the Matter With Me? Podcast, Season Three, Episode Eight, Walk MS MC.


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