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MC

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.

(singing)

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.

Post

Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation

In which: I deal with social isolation, get interrupted by a real estate broker, I’m uninspiring, and I come out against disability porn. I realize I need a scooter again, and the National MS Society support will help.

My name is John, I’m 39 years old, husband, and father of two, small-business owner, radio DJ, podcaster, and I have multiple sclerosis. So I made the What’s The Matter With Me? Podcast to share what I’m going through.

What’s The Matter With Me? 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. If you need medical advice, ask your healthcare provider.

Interrupted by a phonecall

You’re listening to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation. I have been feeling kind of isolated today, so I’m going to hit the mic but first, shout outs to Pamela, Nat, and Rocky.

(phone ringing)

Oh man, somebody’s calling me on the phone. I’m pretty stoked about that, because like I said, I’m feeling isolated. I’ll be right back. —

Man, I don’t know whether to feel more or less isolated. Someone called me, yes, but it was a real estate agent from across the country, from the other side of the country. This is a thing that’s been happening to me, and I’m glad to tell this story here, because it gives me something to focus on rather than my own isolation. People call me, okay, real estate agents from across the country, fools, they’re all fools, because I don’t own any real estate on the other side of the country, but somehow they got it on some listing, they got my name and phone number somehow, and they’re like, “We’re calling you about the property.” I’ve already looked it up, it’s been going on for months.

So, periodically someone from across the country, from this city will call me and be like, “Are you still selling the property at wherever?” And I’m like, “No, it’s not my property. I’m not selling it, and can you take me off the list please?” And they’re like, “Well, sorry, I can’t. Your name’s just on there.”

So anyway, I’ve been getting calls about this hot property condo apartment unit or something, I have nothing to do with it. So should I feel more or less isolated? I don’t really know, but I’m kind of thankful, I guess.

I feel more, I mean let’s be real, you should feel more isolated if the only people who call you are real estate brokers, and just to clarify, I don’t own any property over on the other side of the country, but also, I don’t own any property on this side of the country. Just to be clear, there’s no property. I mean, I have personal property, my clothes, right? And personal effects, I guess is really all I can claim.

So just to recapitulate, I am feeling social isolation, the people who call me are real estate brokers trying to sell property that I don’t have.

Ableism, Disability Porn and the Right To Be Uninspiring

This kind of stems out of last episode. I said right off the top that I was going to exercise my right to be uninspiring, and some people thought that was funny, and just to give some context to that remark, it’s really just a remark, right?

But 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.”

It’s kind of like Us Weekly in a way, I guess. But the thing is, it’s just like celebrities in Us Weekly are annoyed by the paparazzi, I’m annoyed by other people projecting their fantasy about how horrible it must be to be me, and that it’s so inspiring that despite how horrible it is to be me, that I try, and I try and be whatever I am, like every other person.

So I’m uninspiring, right? That’s what I meant, exercise my right to uninspire, and then this is one of those episodes where I just freestyle about how bummed out I am, and so that really ties in with the last episode, the right to be uninspiring.

That’s what they call disability porn, where you’re watching and you’re like, “Oh yeah, bless their hearts.” It’s kind of condescending. It’s complicated at the very least.

Stress at work

I haven’t been on the radio recently, I haven’t been down to KFJC. I’ve been trying to do Hoppin Hot Sauce, I’ve been recording Pepper Show and focusing on that, and I’m making a new size of Hoppin Hot Sauce. There’s a new production that’s happening at the end of the month. So it’s kind of taken all my energy.

I need a scooter

That’s only half of this story, the other half is that Foothill College is on a hill, that I have to take elevators, and go on ramps, and it’s quite a jaunt. And I’ve been talking for the past couple of episodes about how I need to figure out a scooter, well, Foothill College is a place where I can really use a scooter, because you get there, you take a pretty long ramp to an elevator, then the elevator takes you up to the third floor, you walk part way across the quad, and go up another elevator, and go halfway back the way you already came, and go around, and then you get to the Foothill College radio station, get to KFJC.

So it’s kind of zigging and zagging up and down, a lot of elevation, and then I get on the air and I’m on the radio for four hours. It’s a lot of standing, moving, walking around a tight space. So it has its own stress, but the walk to and from is killing me. I need to get that scooter situation solved, so I can get back on the air, because in previous episodes I figured out, “Hey, KFJC is like my support group.” They don’t have MS, but they have another sickness: they care about music and broadcasting, and I care about that too.

I like underground music, and music that you can’t hear anywhere else, and that’s all what KFJC does, and the people there are like encyclopedias, it’s crazy. They know everything about everything. They’re just experts of everything. that may be a bit much, but they know a lot about records and obscure music for sure.

I’ve got to get back on KFJC. That is going to relieve some isolation. I’m also feeling a lot of stress because I’m producing a new size of Hoppin Hot Sauce, and I’m making a second production, and production time is stressful. Every day I have a timeline, it’s ticking down. At the end of the month I’m going to get pallets of hot sauce, they’re going to live, and they’re going to have labels, and it’s going to start again. Hoppin Hot Sauce is back, we’re strong. It’s a big win that I have taken my business through one production cycle, I’ve sailed through that, I’m getting to the end of my product, and I’m going to order more, and I’m going to order something new. So that’s really exciting, but it’s also kind of stressful, and I’m needing support, and KFJC is where I would get it, I think the best place for me. But I don’t have a scooter.

The National MS Society will help me find the support I need

I’m going to go on Friday, there is support at the National MS Society office here in the South Bay, there is support available. I can go to the support group and talk to them about scooters. Maybe I can get a head start. I’m going to be on the Silicon Valley Walk MS in San Jose on May 4th, I’m going to be MCing that from 8 AM to noon, and I was going to put off my purchase until then, but I think I need to get this sorted. I need to relieve this isolation.

This was therapeutic

Man, it’s a really good thing when I can record the What’s The Matter With Me? Podcast and it can become its own therapy, and I can figure out what’s going on is: I’m freaking out about production, I’m not that isolated, and I have some good options. I have a strong family, but I can reach out to the National MS Society for support, and I can reach out to my hometown homies, KFJC, my support group of people who likes the same stupid stuff I do: music. I can’t wait. This is good. And if it doesn’t work, I’ll be back here, because this was useful. I can talk about my problems and figure out what they were.

Thank you for listening to the What’s The Matter With Me? Podcast. You know 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.

Hoppin Hot Sauce is the best sauce in the world

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

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

(singing)

It’s a movement, Hoppin Hot Sauce is a movement, check it out HoppinHotSauce.com.

Thank you

Thank you for listening to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation.