What’s The Matter With Me? Podcast
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. I made this podcast to share what I’m going through.
About Me:
John Hoppin
Creator of the What’s The Matter With Me? Podcast
I am 39 years old, a husband and father of two, and I have multiple sclerosis. I made this podcast to share what I’m going through.
I have multiple sclerosis and that affects my life and work in many ways. I am the host of the What’s The Matter With Me? Podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.
Season 2, Episode 16: LIVE from the Petaluma SMART Station
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LIVE From The Petaluma SMART Station
My brace helps me to walk, but it doesn’t mean I can go out walking. I learned it the hard way yesterday when I went out in Petaluma.
Live broadcast from a bench outside the Petaluma SMART Station.
Sorry I’ve been away
I’ve been doing events for Hoppin Hot Sauce.
BJ Miller
I met BJ Miller at a latke party. I have been wanting to meet him in person to this article in the New York Times from January 2017. I got to sit down right next to him and talk, it was awesome. Tell you more later
Thanks for listening
I’m looking forward to more episodes in 2019.
Transcript:
It’s the What’s the Matter With Me? Podcast season three, episode 17. I’m at the Petaluma Smart Train station. I’m chilling here on a bench. I tried walking from here to downtown Petaluma, it’s just a couple blocks they told me. You know it is just a couple blocks but they’re really long, redeveloped blocks and it was killing me. So I had to call it off around the bridge. It’s just past the grocery outlet over the bridge and you’re in downtown Petaluma. And that’s where my mom and my wife and my wife’s mother and my two kids are running around in downtown Petaluma right now but I had to call it off.
And my wife told me take a car back to the train station, but it was just a block and a half. I could see it and I’m kinda stubborn. So I went on ahead and now I’m sitting on the bench outside the train station rubbing my foot ’cause I wear a brace and every step I take it gets a little tighter, it hurts a little more on my ankle, and then if I’m on like a long walk like that, it can really start to hurt. And it gets to be like carbon fiber on bone or on pressure point or something, I can barely take a step. And in fact I like almost fall down because it hurts so much.
Anyhow, now I made it though. I made it back to the station, I’m sitting on the bench, I got my brace off and I’m rubbing my ankle. Man, it was a tough walk. It took about maybe it took 20 minutes round trip but that was enough to really start … the thing about my brace I’m realizing is it makes it so I can walk so I can walk, but it doesn’t make it so I can go for a walk. You know what I mean? Petaluma’s always got old style cars and motorcycles so that’s what you’re hearing in the background. I’m right by the train station, maybe we’ll hear a train arrive.
Anyhow it was a pretty much bummer walk and now I’m here sitting on a bench outside the train station with my brace off wearing my sock, I look like quite a sight I’m sure. Anyhow I wanted to get on the mic here. I’m out of town, I’m in Santa Rosa, like I said my whole family is up here. And just chilling out before the New Years, on the New Years Day I’m gonna be broadcasting blues music from 10:00a-2:00pm on KFJC. Check it out on kfjc.org. I’m gonna play blues music. There’s something I feel again when I hear that music, I know it’s cheesy but man I hear blues music and I’m like right on. Right on with you right on. Right on. I can’t even right on it enough, I love blues.
So I’m excited to DJ that show, it’s four hours of blues music on New Years Day, what a way to start the year. I’ve been off the air because I been doing a lot of work with hoppin’ hot sauce. We did a sale. I met BJ Miller and the disability right to advocate BJ Miller. He runs a San Francisco Zen Hospice. It’s part of UCSF, he’s a palliative care doctor and a triple amputee. He’s someone I really look up to so it was rad, I went to a [inaudible 00:04:51] and there he was. So I sat on the couch and chopped it up with him. And that was something I’d really been wanting to do for about a year, since the New York Times published a piece about him.
And his work, getting a motorcycle and then bringing the motorcycle mechanic through hospice. Anyway it was really cool I got to meet BJ Miller, I’ll tell about that in the upcoming year. I just wanna get you pumped for season three, that’s what’s coming up in 2019. And I’m gonna try and record more episodes, I’ve been off the air and I’ve been missing it. I been selling a lot of hot sauce, I’ll tell you all about that. I had people help me and as a disabled business man I’m starting to realize you need help. And people are stepping up, that’s the beauty of existence. When you need help, people step up and help you.
And you know I’m a business man, I don’t know what I’m doing. I’m doing my best to sell this hot sauce. It tastes good, you know. So that’s the basic for and after of the whole nine yards. I just tell people try this, it tastes good. Anyway I’ll tell all about that hot sauce business holiday. I’m still doing accounting and all that stuff but you know what, my friends are gonna help me. My family’s gonna get back pretty quick and we’re gonna take the train north from Petaluma to downtown Santa Rosa, get back in the car, maybe we’ll have lunch somewhere. Lunch is definitely something we’ll be looking into immediately.
So anyhow I’m gonna sign off here from the Petaluma station. What’s the Matter With Me? Podcast episode 17, season two, episode 17. I think that’s where we’re at, maybe 16. I didn’t do a lot this year. I got a new set up and I really focused on Hoppin Hot Sauce. And that’s been interesting. But I’m having this disappointing day where I wanted to walk around Petaluma with my family but that was a stupid plan ’cause I have a brace and it’s hard for me to walk so it didn’t work. Surprise, surprise. I gotta figure out something. It made me pretty unhappy but I walked back here and I’m happy to not be in pain basically.
I wish I could be hanging out with my kids and having fun down at the river. But you know I’m up here and I’m just trying to chill out and get centered, get focused. New Year’s coming up everybody. So 2019 is coming. Time to elevate constant, daily elevation. Evolution. All right you guys. Thanks for tuning in, this is the What’s the Matter With Me? Podcast episode 16. Stay cool. See you next year.
Season 2, Episode 15: Misadventures in r/MultipleSclerosis
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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.
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.”
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.
Season 2, Episode 14: Harvest & Wedding
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Welcome to Whats The Matter With Me? Season 2, Episode 14: Harvest & Wedding
Last Episode Recap
I got a new brace from a disabled provider; I am a creative person and for me that means I must take charge of my own representation in order to be who I imagine; Hoppin Hot Sauce is advancing, and I’m getting more disabled and simple things are getting harder.
Shoutouts
Shoutouts to Rocky- always listening; Kyle fromTwo Disabled Dudes podcast, to my wife who worked hard at the Harvest Festival and every other day too. Email me and I will give you a shout out free of charge.
Off The Air
I’ve been off the air for a few weeks, I took Hoppin Hot Sauce to a Harvest Fair. I’ve started a
Hoppin Hot Sauce Youtube channel, and I went on vacation to a wedding in Malibu. let’s get into it.
Harvest Festival
We went to the Harvest Festival at Marshall Cottle Park in San Jose, organized by San Jose Made, a local organizer of maker events and craft fairs. We set up a booth for Hoppin Hot Sauce, with bottles, poster easels, and 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 the youtube channel.
YouTube Channel
I started the Hoppin Hot Sauce youtube channel. I made two videos: the zipa, and the harvest fair recap. i’ve been directing a lot of my energy that way, learning software i haven’t used in 15 years, learning about putting it online. I like it because I can tell my brand’s story, speaking directly to the customer, and also say things that are positive representations of disabled people.
Malibu
I went to malibu for a beautiful wedding under a big palm tree at a glamorous house overlooking the ocean. they were my wife’s oldest friends, they had grown up scampering over the fence to each other’s house in 1980s southern california.
Creating New Products
I’m working on some new products for Hoppin Hot Sauce , one is a spicy salad dressing which seems crazy but people often remark to me that they put it on salad.
when it was time to make lunch today i cubed up some leftover tritip, tossed it with arugula in a bowl, and put spicy salad dressing on it, some walnuts and raisins, and it was pretty good. I’m in mad scientist mode: I’ve got some ideas, and I’ll keep going. I’m also doubting myself constantly like always. The struggle is to move forward and to be comfortable with the unknown. i must always remember- move onwards.
Transcript:
Welcome to the What’s the Matter With Me? Podcast, season two episode 14.
My name is John, I’m 39 years old, a 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. 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, ask your healthcare provider.
Recap, recap. Last episode I got a new brace from a disabled provider, what that means is like the doctor lady in the co was disabled, I thought it was cool. I’m a creative person, I figured this out. Well I knew I was creative but I realized for me that means I must take charge of my own representation in order to be who I imagine. Hoppin’ hot sauce is advancing and I’m getting more disabled at the same time. Simple things are getting harder. It’s that time now, it’s that time. Gotta give shout outs.
Shout outs to Rocky, always listening. Shout outs to Kyle from Two Disabled Dudes podcast and to my wife who worked so hard at the harvest fair and every other single day too. Email me, john@hoppinworld.com and I will give you a shout out. Probably free of charge. Definitely free of charge, you can download the What’s the Matter With Me podcast on Apple podcast and on whatsthematterwithme.org.
I’ve been off the air for a few weeks. I’ve been busy though but definitely prostrate myself. I’m sorry to you. But here it is, here’s a new episode. In the meantime I’m gonna tell you what went down, I took hoppin’ hot sauce to a harvest festival and I started a hoppin’ hot sauce YouTube channel, and I went on vacation to a glamorous wedding in Malibu, so let’s get into it.
We went to the harvest fair in San Jose here, organized by San Jose maid, a local organizer of maker events and craft fairs. So they have a harvest festival every year at harvest time, around this time and they set up an arcade of vendors who sell candles and gluten-free baked goods and stuff. We went last year, and I was like I wanna be in there, I want hoppin’ hot sauce to be there. So this year I applied and we set up a booth for our hoppin’ hot sauce bottles and posters on easels, and myself and my wife passing out samples and selling bottles.
My goals were number one, to represent the brand and number two, sell some sauce. And we did that. We did well, I was happy at the end of the day. But it was five hours of talking, it was so tiring. I slept the whole next day and next time I bring the hoppin’ hot sauce tasting experience out in the open like that, I have to be sure there are two people with me, not just me. Because I’m no good to fold even a pop up canopy no matter how easy it is. I made a video about the harvest fair and I put it on my YouTube channel.
What’s that, what’s that about a YouTube channel? I started the hoppin’ hot sauce channel. I’ve made a couple videos so far, one is about the zebra who’s like the ancient king of Lake Guadaveda who started the myth of El Dorado or the myth of El Dorado centers around the zebra. And I made another one about the harvest festival recap, about the square dancers and the goats and other stuff. Check it out. It’s the hoppin’ hot sauce YouTube channel.
I’ve been directing a lot of my energy that way. Learning software, relearning software about video editing that I haven’t used in 15 years and I’m learning about putting it online. And I like having the video medium because I can tell my brand story speaking directly to the customer and also I can say things that create positive representations of disabled people. Check this out. Thanks for watching the pepper show, I’m John Hop and I make hoppin’ hot sauce, check it out at hoppinhotsauce.com. I have multiple sclerosis, it made it hard to work in the kitchen but it didn’t stop me from cooking. I made hoppin’ hot sauce to share the taste of my table with yours. Check it out, get some at hoppinhotsauce.com.
All right, see what I’m saying? I think that there’s something powerful about that, it’s telling my story, it’s who it is. Take it or leave it. I did this, I won’t stop. If you’ve been listening to my podcast you know nothing, I’ve decided over and over that I won’t stop. I’m sorry I took a break.
I went to Malibu with my wife to a big beautiful glamorous wedding under a palm tree at a big white house overlooking the ocean. The bride was my wife’s oldest friend and she’d grown up scampering over the fence. They both scampered back and forth to each other’s houses in 1980s Southern California. It was cool to hang out with this lady and her family and meet her husband and it was cool to get a glimpse of all these people that my wife had told me so much about. And it was cool to be in Malibu. I even hit up the weirdest spot, I had the weirdest day in Thousand Oaks.
I went to a place called the Record Outlet, which is a used record store in Thousand Oaks. It was awesome. And then for lunch I was like I don’t know anything, let’s go to a pub. You know how it is, you don’t wanna like look stuff up, I didn’t wanna see about the rating or whatever. So I just went, we went to this pub and it was like Hooters and it was a big room full of guys watching horse racing and another room full of college football and there was like betting going on and the ladies, it was called, what was the theme? Scottish Hooters. So everything was out there, it was just … we each had a beer and we split the spot. It was weird but the record store was really cool. Record Outlet in Thousand Oaks, I wanna go back.
That was not a paid advertisement, I just like used records stores. I’ll go to a used record store any day. I’m working on some new product, I’m working on some new products for hoppin’ hot sauce. One is a spicy salad dressing which seems crazy but people often tell me that they put the sauce on salad. So when it was time to make lunch today I cubed up some leftover tri-tip steak, I tossed it with arugula in a bowl and put spicy salad dressing on it. Some walnuts and raisins and it was pretty good, I’m in mad scientist mode now. I got some ideas and I’ll keep going.
I’m also doubting myself constantly like always. Maybe I should just give up. But the struggle is to move forward and be comfortable with the unknown, and I have to always remember onwards. Thank you for listening to the What’s the Matter With Me podcast, that’s another one in the books. You can download What’s the Matter With Me podcast on Apple podcast and on whatsthematterwithme.org. Thank you for listening.