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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.

reddit

Welcome to Whats The Matter With Me? Season 2, Episode 15: Misadventures in r/MultipleSclerosis

In this episode, I head to the r/MultipleSclerosis subreddit for support, and get mixed results.  Is my message insulting or inspiring?  It depends on who you ask.

  • 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 this podcast to share what I’m going through.
  • Whats The Matter With Me? is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

Last Episode Recap

I had a booth at the Harvest Festival, i went to a glamorous wedding in LA. Check it out on whatsthematterwithme.org

r/MultipleSclerosis Thread

I posted the last episode on Reddit and I had an interesting response. I’ll just read it for you and then we can talk about it

The post was called, “We can achieve what we set our minds to, we just might have to do it a bit differently.”  Underneath that there is a picture of The Hoppin Hot Sauce booth at the Harvest Festival.
The caption reads, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. I believe that us MS warriors can do whatever we put our minds to, and I think it is a good thing to push against the limitations MS puts in front of us.”

Excerpted from What’s The Matter With Me Podcast Season 2, Episode 14: Harvest Festival

Hoppin Hot Sauce went to the Harvest Festival at Marshall Cottle Park in San Jose. We set up a booth with bottles, posters, easels, myself and my wife passing out samples.. My goals were #1- to represent the brand and #2- to sell some sauce. We did well.

It was 5 hours of talking, very tiring and I slept the whole next day. Next time I will be sure there are two people with me, not just me. I am no good to fold a popup canopy no matter how easy it is. i made a video about it and put it on our youtube channel.

Check out the full episode at whatsthematterwithme.org, or listen at Apple Podcasts or stitcher.

R

I ended it, “We can achieve what we set our minds to, we just might have to do it a bit differently,”

Discussion… Things Get Interesting

The first comment was “Yeah, I get what you’re saying, but the truth is there are many people with MS that can’t just push through and this message is kind of insulting for them.”

I replied, “I appreciate your perspective, thank you for sharing it. I didn’t mean insult anyone. I started the podcast as a way to take charge of my own representation, to create a positive image of someone who is affected by multiple sclerosis but is attempting to enact positive change in their life regardless of the limitations.”

The response, “No worries! Just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.”

And another person responds, “Thank you for posting. These were my thoughts exactly. Your running a marathon with MS is my getting out of bed.”

Another, “Congrats on your business.
Many here are much further along in our MS journeys.
Do what you can while you can.”

Somebody chimed in to buy some hot sauce, we did the deal.

And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here, and if it goes to a good cause, even better! You’re a shining light man, a testament to never stop pursuing your dreams, no matter what looks you in the face and says “bet you can’t.”
Wishing you all the best.”

That last response picks me up a little. It’s from a young person, a 29 year old.

People Say You Can’t Accomplish What You Want To

There is a lot of information about MS saying that you can’t do what you want to do. That you will have disappointment if you try. When I got diagnosed, I didn’t accept that.

Everything is finite For everybody. We’re all here on Earth and none of us is getting out alive. I think you should use what you got while you got it and that goes for everyone.

No Offense

Some of the comments on this thread made me feel sad. First of all I don’t mean to insult anyone.

There Is A Place For Each Of Us

I think we all should try as hard as we can, and that’s why we’re here on this planet. I think everyone has different abilities regardless of whether they have MS or if they’re tall or short or whatever. I can’t dunk a basketball. if I want to be involved with basketball I have to work in the front office or as a coach. I am not going to make the team. but if I love basketball I can find a way to be involved, to make it my life even.

I want to make that clear regardless of our abilities we can follow our passion and try to find fulfillment, which for me is fulfillment itself.

I made this podcast to encourage others to try , not to compare myself to others.

I Felt Judged

I felt a little bit judged. I have had Ms for 20 years and it’s not an easy time.
I peed my pants a bunch of times. I feel like a total complainer but I’m not even started I have so many other problems related to Ms. I could go on and on.

No Spring Chicken

I’ve had Ms for 20 years. I did not appreciate having people tell me I’m at the beginning of my MS Journey. I’ve got a long way to go but I’m no spring chicken.

Thanks for listening

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

Transcript:

Welcome to What’s The Matter With Me? Season two, Episode 15.

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 this podcast to show what I’m going through.

What’s The Matter With Me? is an MS podcast, and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, as your health care provider.

All right, let’s get going. What’s The Matter With Me? Episode 15. First off, let’s recap. Recap last episode, I had a booth at the Harvest Fair. And I went to a glamorous wedding in Los Angeles. Check it out. It’s on whatsthematterwithme.org.

Okay, check this out. I posted the last episode to the Multiple Sclerosis subreddit and I had an interesting response. Those of you listening back, I have hit the subreddit before and had kind of interesting times on Reddit. So, I’ll just read it for you and then we can break it down.

The post that I wrote was called, We Can Achieve What We Set Our Minds To, We Just Might Have To Do It A Bit Differently. And underneath that, there was a picture of the Hoppin Hot Sauce Booth that I used for the picture of the last episode. I wrote, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. And I believe that us MS warriors can do what we put our minds to. It’s a good think to push against the limitations MS puts in front of us.” And then I had an excerpt from the post, talking about Hoppin Hot Sauce went to the Harvest Festival. It was hard. There was talking. I had to sleep the next day. And check out the full episode. And I ended it out by saying, “We can achieve what we set our minds to. We just might have to do it a bit differently.” And then, I started to get response and this is always when things get interesting.

So, I always go to Reddit, and I’m like, “These are my people, they’ll support me,” and it always ends up just being a little bit different. Because what it is, is it’s an online forum full of anyone. And it wasn’t too bad. People didn’t hate on me but I thought it was a mixed bag. So, I ended it up, “We can achieve what we set our minds to. We just might have to do it a bit differently.” The first comment was, “Yeah, I get what you’re saying, but the truth is there are many people with MS that can’t just push through, and this message is kind of insulting for them.”

So, I had to take a step back off of that because I didn’t mean to insult anybody. I was looking for support here, and now I’m insulting people. Something has gone wrong.

I replied, “I appreciate your perspective. Thank you for sharing it, and I didn’t mean to insult anyone. I started the podcast as a way to take charge of my own representation. To create a positive image of someone affected by Multiple Sclerosis. But attempting to enact positive change in their life regardless of the limitations.”

The response, “No worries. I was just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.” And at that point, another person responded. “Thank you for posting. These were my thoughts exactly. You running a marathon with MS is my getting out of bed.” And then another response, “Congrats on your business. Many here are much further along in our MS journeys. Do what you can while you can.” Somebody chimed in to buy some hot sauce. We did the deal. That was good. I’ll take that.

And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here. And if it goes for a good cause, even better. You’re a shining light, man. A testament to never stop pursuing your dreams, no matter what looks you in the face and says, ‘Bet you can’t.’ Wishing you all the best.” That last response picked me up a little. It’s from a young person, a 29 year old guy.

There’s a lot of information about MS saying, when you get it you get told you can’t do what you wanna do. That you will have disappointment if you try. When I got MS, I didn’t accept that idea. Everything is finite for everybody, is what I thought. We’re all here on earth and none of us is getting outta here alive. And I think you should use what you got, while you got it, and that goes for everybody.

Some of the comments on the thread made me feel kind of sad. First of all, I didn’t mean to insult anyone. That was tough to hear, because I really don’t mean to insult anyone. And I think we should all try as hard as we can. That’s why we’re here on this planet. I think everyone has different abilities, regardless of whether they have MS, or if they’re tall, or short or whatever. I can’t dunk at a basketball. If I wanna be involved with basketball, I have to work in the front office or as a coach. Or as a towel boy, a water boy, whatever. I’m not going to make the team, but if I love basketball, I can find a way to get involved with it. To make it my life, even.

I wanna make that clear. Regardless of our abilities, we can follow our passion and try to find fulfillment. And to me, that’s finding fulfillment itself, just trying to find it.

I made this podcast to encourage others to trying, and not to compare myself or insult people. And the other end, I felt a little bit judged. I’ve had MS for 20 years and it’s no cakewalk. I peed my pants a bunch of times, and anyone who pees their pants can tell you that sucks. I felt like a total complainer but I’m not. I’m just getting started. I have so many other problems related to MS, I could go on and on. I say the wrong word, I forget what I’m talking about. What do you want? I had the MS for 20 years and I don’t appreciate people telling me I’m at the beginning of my journey. I got a long way to go for sure, and I understand that perspective. And that’s how I look at it, but I wasn’t born yesterday and I wasn’t diagnosed yesterday.

Anyway, thanks for listening to this. I think that what I’m gonna learn is that going on Reddit for support is a mixed bag, because anyone can be there and say whatever they want. And that’s the whole point of it and that’s why it’s good. But at the same time, I might be barking up the wrong tree to bring my message there, looking for support. I’m not really sure. I just don’t know what to do really. It stopped me from making an episode for a while, because I wasn’t sure how to deal with it. But I’m just gonna keep on going. That’s the only way.

So, this is What’s The Matter With Me, Episode 15 in the books. I went to Reddit and probably won’t go back there after this episode. Maybe next episode, I’ll go back there looking for help again. Come back here being like, “Reddit was mean to me.” I mean, who cares really. You try what you can. Everything is finite. Not everyone can dunk a basketball. Not everyone can palm a basketball. I could. I was a heavy kid, and now I’m not. I’m six feet tall. I do not have hops, let me tell you. And I’m not making the team. You know, I can’t put a body on the rebound but that’s about it. You know, maybe I’ll get dinged up in football. I should play football, but I got enough upstairs to worry about.

Anyway, Season Two, Episode 15. Just complaining, looking for support. I don’t even know what this is about anymore or why do this, but it’s another one in the books. Thank you for listening. Stay tuned ’til next time. Thank you for listening to the What’s The Matter With Me? podcast.