My name is John,

I’m 40 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.

I created the What’s The Matter With Me? Podcast to share what I’m going through.

Portrait

I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of public interactions that create new conditions in the community.

I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a 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.

If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.

Garden

MS Breakthroughs

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Attending the MS Breakthroughs Conference

Over the weekend, I attended the MS Breakthroughs event put on by the National MS Society. The keynote speaker was Jeffrey Dunn, director of the Stanford MS Center. The event promised to inform about the current-day MS Breakthroughs as well as the future of MS Research.

It began with a free breakfast. The guy next to me dug in. I’d already eaten. I heard the danishes were good.

Award Ceremony

Someone who raised $250,00, another raised $100,000 & wrote pieces of legislation.. a team of 4 people raised $1.1m. A cool guy who runs a lot of local support groups received an award.

Alameda

Volunteer of the year came from Alameda. I used to work in Alameda supervising down’s syndrome adults at their jobs collecting carts for the supermarket.
You can’t drive 26 in Alameda without the authorities checking you out! It’s locked down tight in Alameda.

Grouping and Splitting

Dr. Dunn started off with some history of the MS Society, and its important role fostering collaboration, explaining the scientific paradigm of grouping and splitting.

Things start far apart and come together, collaborate, and become normalized, then specialization occurs. Repeat process forever.

Biology is complicated

Biology is complicated – the result of complex processes comprised of many interacting components. Why things happen is often unclear.

We need a map

In MS, the immune system attacks the brain. There are at least a few thousand pathways in the immune system – there’s no map. Dunn thinks we need one, because identifying the specific immune pathways driving disease can enable individually tailored treatment

Immune Hypertension

Dr. Dunn suggested that Multiple Sclerosis is an endstage name, like referring to a “stove fire” as a “burned down house”. He said a better name might be immune hypertension.

Thanks for listening

To the Whats The Matter With Me? Podcast
Other episodes at whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
Hoppin Hot Sauce is a movement!
(Hoppin hot sauce theme)
Season 3 episode 2 in the books! Thanks for listening to the What’s The Matter With Me? Podcast.

Transcript

JOHN HOPPIN: Welcome to What’s The Matter With Me, Season Three, Episode Two, Scene Report: MS Breakthroughs. 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.

What’s The Matter With Me is an MS podcast, and it’s also about other things. Past episodes available for download on Whatsthematterwithme.org, iTunes, and wherever you get it. I’m not a medical professional, and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

In this episode, we’ll talk about the MS Breakthroughs conference. But first, last episode recap. Something happened at Bill’s Café, and I stepped in a hole, and I was on the radio. Check it out, surf on over to Whatsthematterwithme.org to get the last episode. It’s that time, shout outs to Rocky, always to Rocky. Shout outs.

Over the weekend my wife and I attended the MS Breakthroughs conference put on by the National MS Society. It was at a hotel in San Jose. Jeffrey Dunn, the Director of the Stanford MS Center, was the keynote speaker. The event promised to inform us all about the future of MS treatment. It started with free breakfast. I didn’t get the memo or something, I didn’t realize it was free breakfast. You know when you walk in a room and there’s a bunch of free breakfast, and you’ve just eaten breakfast, and you’re kind of like, “Dang …”

So I sat down at my table. My wife came with me. I sat next to Peter, a Canadian entrepreneur. His current venture involves coaching business people how to work across cultures. And he told me the danishes were good. I didn’t have one, but I admired, from one entrepreneur to another, I admired his gusto for free breakfast.

The Director of the National MS Society spoke, kind of singling out the organization. It was cool, we’ll talk a little bit more about that. But one thing she dropped on us, there was a recent study that came out, and it turns out Americans with MS number over one million, which is over twice the previously reported number. I thought that was kind of interesting.

Okay, so before the keynote address my Dr. Dunn, they had an award ceremony. I guess I don’t read things or pay attention or something, I just had no idea. So all these people are up there. They had research fundraisers, people raising money for the MS Society. Some people raised $250,000. One guy did $100,000 and wrote five pieces of legislation, and went to Sacramento and got three of them in with the representative somehow. I mean, this is crazy. Four people raised $1.1 million.

There was a cool guy, he runs a lot of local support groups, he has MS … He received an award. The volunteer of the year came from Alameda, and I used to work in Alameda, a little island right off of Oakland. I worked there supervising down syndrome adults at their jobs, collecting carts at the supermarket. And I found out, I was 20 or 22 … I was too old to have such a low paying job I think. I needed to get my act together. But I sat around all day reading the newspaper and supervising adults. But I found out on my breaks, you can’t drive 26 in Alameda without the authorities checking you out. They have it locked down in Alameda. Congratulations to the volunteer of the year, who’s name I didn’t write down. But it’s all love. Alameda, baby!

All right, Dr. Dunn got up, it was time for the keynote address. He started us off with some history of the MS Society. It began in 1945. A lady named [Sylvia Clarke 00:05:49], her brother got this disease. She made a New York Times ad, and it read, “Multiple Sclerosis: Will Anyone Recover From It? Please Communicate With the Patient.” And 54 replied. No one had a cure. And all 54 begged for help.

So this is this thing called splitting and grouping. So there were MS cases, but they were all far apart from each other. And they were all kind of isolated, spread out. So they formed this MS society. People started working together, became together as a group. They defined multiple sclerosis, and then from that they split again to specialty classifications, like classic MS or opticospinal MS, primary progressive, and so on. Group and splitting, that’s the scientific paradigm.

And I got a footnote here, according to this guy [Coon 00:07:01] in [inaudible 00:07:02], a loosely characterized group of activities often consisting of competing schools becomes a mature science when a few concrete problem solutions provide models for what good research is in that domain. These exemplary problems come solutions become the basis of a paradigm that defines what it is to do normal science. And specialization is speciation, as scientific progress heightens communication breakdown. Experts doing similar kinds of research come to realize that their use of key taxonomic terms no longer jives with mainline uses. And what Coon calls the No-Overlap Principle is violated. The group is using a taxonomic hierarchy for crucial [kind 00:08:08] terms, and the associated categories that is incompatible with that of the established tradition.

Splitting and grouping. That was a cool idea. That slide really blew my mind. Scientific paradigm, splitting, grouping, and splitting and grouping. Cool.

All right, no more footnotes in this section here. The footnotes are over, take a deep breath. Wow, that was big words and stuff. And it was a cool idea, science splitting and grouping. We’ll split from that section though, and just continuing on … Dr. Dunn, he said, “Hey, there it is. Biology is complicated. It’s the results of complex processes comprised of many interacting components. And why things happen is often unclear.” I guess there is some long words there, sorry about that.

In MS, the immune system attacks the brain. That’s what happens, that’s why people have problems. Symptoms become visible because the immune system is turning your brain into what they call plaque. You ever scrap plaque off your teeth? Anyway, it’s not good for thinking I don’t think. There are at least a few thousand pathways in the immune system, and there’s no map. And Dunn thinks we need a map, because identifying the specific immune pathways driving disease can enable individually tailored treatment.

And then he said something pretty interesting. He said, “Multiple sclerosis is an end-stage name, it’s the wrong name. It’s like calling a fire … If you have a fire on your stove, your house isn’t burnt down, right? But it’s calling what we have multiple sclerosis, it’s like calling a stove fire a burnt down house.” And he suggested the name Immune Hypertension.

There you have it, Immune Hypertension. Thanks for listening to Season Three, Episode Two, The Scene Reported: MS Breakthroughs. It’s a What’s The Matter With Me podcast. You can find other episodes at Whatsthematterwithme.org, iTunes, Google podcasts, wherever you get your podcasts, it’s there. Check out more of the music like this sick background music, Soundcloud.com/john-hoppin. Worldwide universal sponsor, Hoppin Hot Sauce is a movement-

Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world. The world, I’m telling you.

That’s right. Check it out, Hoppinhotsauce.com. It’s Season Three, Episode Two, in the books. Thank you for listening to the What’s the Matter With Me podcast.

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Flyer on table

Something happened at Bill’s Cafe

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Something Happened at Bill’s Cafe

I order coffee and toast, John John gets pancakes.
Tap on my shoulder, our host –
“Excuse me sir, is that.. your underwear?”

Injury in the yard

I was working in the yard, fertilizing some yellow cauliflower plants.
I stepped in a hole leftover from when we pulled out tomato plants and I fell to my side. It felt like i tweaked it.
I was in a wheelchair or bed ridden. I had a lot of work to finish before Christmas.

I was on the radio

Last Friday, I hosted the Jazz Collective on 89.7 kfjc.org
This morning at 4am i got this message:

Y o your jazz collective was the stuff man. I played all of it while cooking dinner and hanging with friends. Nice balance of easy listening and skronk. Omg it was so fat

Anonymous

There’s no difference

Its cool to be on the radio where i can have a voice and it doesn’t make a difference that i’m disabled..i like playing records too.
Check it out: Jazz Collective last Friday at kfjc.org
My air name is Hemroid The Leader. i’ll explain later.
The stream is up for 2 weeks.

MS Breakthroughs

I’ll be attending MS Breakthroughs with Jeffrey Dunn on Saturday January 26 in San Jose.
I’ll bring some flyers in case somebody wants to hear a podcast.

MS Breakthroughs

Join us to learn about our progress this past year in accelerating breakthroughs for people affected by MS, what’s in store for the year ahead and enjoy a research update from our keynote speaker Jeffrey Dunn, MD, Professor of Clinical Neurology and Division Chief of Clinical Neuroimmunology at Stanford Neuroscience Health Center at Stanford University in Palo Alto, California.

He serves as the Chair of the MS Section of the American Academy of Neurology and serves on the National Medical Advisory Board of the National MS Society.

Re

Thanks for listening

To the Whats The Matter With Me? Podcast
Other episodes at whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
Hoppin Hot Sauce is a movement! makes every plate taste great hoppinhotsauce.com
(Hoppin hot sauce theme)
Season 3 episode 1 in the books

Transcript

JOHN: Welcome to the What’s the Matter with Me? Podcast, season three, episode one: Something Happened At Bill’s Cafe.

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.

The What’s the Matter With Me? Podcast Is an MS Podcast, and it’s also about other things. Past episodes are available for download on whatsthematterwithme.org, iTunes, and wherever you get it. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your health care provider.

Recap, recap, I post … man, I get too excited sometimes. Recap, I posted live from the Petaluma Smart Train Station. Check it out, surf on over to whatsthematterwithme.org, season two, episode 16. Check it out. Gotta give big shout outs, big, many thanks, shout outs to Rocky, Shauskin and Patrick, and most of all, especially Nami. Shout outs.

You know, something happened at Bill’s Cafe. I felt that morning when I woke up, I was by my bed getting dressed. It felt kind of strange when I put my pants on. I checked it out. In the leg with my brace, I was putting it on, it felt kind of weird. Then I had my morning, I went ahead, I dropped Coco at school and parked there, walked from the car to the classroom. I was with John John. We all went. I dropped her off, everything was cool, everything was normal. And I took John John to the dentist, and I’ve read, probably on my phone in the waiting room, and it’s all good. It was done and he had a good appointment, we went back to the car, everything normal.

Bill’s Cafe. I went to Bill’s Cafe. Bill’s Cafe is a popular, like, brunch chain around here. So I wanted to take John John for some pancakes. He did good at his dentist appointment and I wanted to reward him. So I ordered coffee and toast, and John John got the pancakes, and then I felt a tap on my shoulder, and I looked out and I was like, no. And the host, the host was there. It’s 11:00 AM, there’s like a coffee shop vibe all around. People who were eating Brunch at 11:00 AM on a Tuesday, you know, it’s an interesting scene. It’s like retired people, and weirdos. And my dirty underwear that I wore yesterday is in the middle of the floor.

The guy is like, “Excuse me sir, is that your underwear?” I’m like, “Why yes it is,” you know, and so I got it, I stuffed it, I mean, what do you … I can’t be like “No, clean it up,” right? So I stuffed it in my pocket, and I played it off, and I knew I was just like, this, this is like, so … I’m mortified, right? But I’m like, no, do not be mortified. Just play it off. And I played it off, but the pressure was high. My something happened to Bill’s Cafe, my dirty underwear was it. And I felt weird putting my pants on in the morning, you know? Always check your pants I guess, or I don’t know what the moral is here.

Okay, well that’s out of the way. Before the holidays, I had a pretty bad accident. One Sunday morning I was working in the yard, and I was fertilizing some yellow cauliflower plants. We got some yellow cauliflower plants cause we were like, they’re weird color. I thought the kids would dig that. So we also pulled up the tomato plants when we planted the cauliflower, you know, and the tomato plants leftover from the summer, they were big, you know. So they made holes when we pulled ’em up and we forgot to fill ’em I guess, we didn’t really even think about it. And when we pulled out the tomato plants, then I stepped in the hole and fell to my side. And I kinda felt like I tweaked it. It was really hard to get up. Of course I was just about to leave the house so I got mud all over myself. I had to go inside and change and clean my shoe because I got to wear it ’cause my brace is in there.

So I was totally a mess, and it kind of felt like I tweaked it. I went to Oakland, and I met this rad dude, BJ Miller. I’m going to talk about him maybe next episode. And by the time we got home that night, you know we’ve been out all day. It was kinda cool, but then all of a sudden I couldn’t walk. I couldn’t put any weight on it. And then it was just, we had to go to the hospital, get crutches, that didn’t work. So we got a wheelchair, and it took like five days.

Nami helped me get up and wake up, go to the bathroom, get dressed. I was like a mess. And my buddy Manny, he helped me out, came by in the daytime, hanging out at dinner. He was cool, and it was super tough to be in a wheelchair, and bed ridden and … ‘Cause I had kind of tweaked my left hip and my left leg is the one that’s useful. So it was kind of … it was very touch and go. So I was bed ridden and I had a lot of work to do before Christmas, but I couldn’t do anything. I’m on pain meds and it was hard. And people helped me though, and am really grateful that I’ve recovered, but I had a bad accident. I was not digging that.

I was on the radio. Last Friday I hosted the jazz collective on 89.7 KFJC.org. It’s a jazz show. This morning at 4:00 AM I got this message: “Yo, your jazz collective was the stuff, man. I played all of it while cooking dinner and hanging out with friends. Nice balance of easy listening and skronk. OMG it was so phat.” It’s cool to be on the radio where I can have a voice and it doesn’t make a difference, any difference at all, that I’m disabled and I like playing records too. I have a good time. Check it out. Jazz collective last Friday, you can get it from KFJC.org. Just go to the homepage. Click on more from the archive, and my air name is Hemorrhoid the Leader. I guess I’ll have to explain that later.

On Saturday, January 26th in San Jose, I’ll be attending MS Breakthroughs. It’s an event put on by the MS Society. I’ll bring some flyers in case somebody there wants to check out a podcast. MS Breakthroughs: join us to learn about our progress this past year in accelerating breakthroughs for people affected by MS, what’s in store for the year ahead, and enjoy a research update from our keynote speaker Geoffrey Dunn, MD, professor of clinical neurology and division chief of clinical neuroimmunology at Stanford Neuroscience Health Center at Stanford University in Palo Alto, California. He serves on the chair of the MS section of the American Academy of Neurology and serves on the National Medical Advisory Board of the National MS Society. Jeffrey Dunn at Ms Breakthrough, San Jose, California, Saturday, January 26. The Courtyard by Marriott, San Jose, North Silicon Valley. Register at nationalmssociety.org.

For sure I’ll let you know how it goes. Thanks for listening. Thanks for tuning into The What’s the Matter With Me podcast. Other episodes are at whatsthematterwithme.org, iTunes, or wherever you get your podcasts. Check out more of my music on soundcloud.com/John-Hoppin. That’s J-O-H-N dash H-O-P-P-I-N. And of course sponsor, word from our sponsor. Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world! That we’re not telling you! Makes every plate great, hoppinhotsauce.com. Season three, episode one in the books. Thank you for listening to the What’s the Matter With Me podcast.

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Beach

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.

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reddit

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.

  • 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.

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Season 2, Episode 14: Harvest & Wedding

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Welcome to Whats The Matter With Me? Season 2, Episode 14: Harvest & Wedding

  • 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 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.

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Season 2, Episode 13: It’s Fall

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Welcome Whats The Matter With Me? Season 2, Episode 13: It’s Fall

  • 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

Antacids, Artificial intelligence thinks I want to  know what my Dad looks like, and other things I’m not asking.

Shoutouts

To Rocky, always take your hoppin hot sauce medicine. To Patrick- thanks for listening. Don’t forget to write me and I will give you a shout out even if it’s to Patrick and Rocky over and over again forever shout out y’all.

Nat- I dig your paintings we should do a trade. Email me  and I will give you a shout out free of charge.

Fall #1

I fell in the living room and hit the back of my head.  The sound in my head was very loud.  It hurt a lot.  It was right up there with my worst falls.  It was in the living room near the entrance where there ios a lot of stuff on the ground.

Fall #2

I tripped and fell in the middle of my yard when there was watering in a head to get to the chair in the corner to stand up again and it was an epic journey, scooting my butt across the yard.

New Brace From A Disabled Practitioner

I got a new brace. First time working with a disabled care provider. It was great and I told her so. She had a disability that you can see right away looking at her. It even made her work for complicated but she had hacks and workarounds just like I do. Except she was in the doctor’s chair. It was so cool. During the exam She couldn’t do one thing, so I helped her and I couldn’t do this other thing and she helped me.

No Fellowship — Creating My Own Representation

I did not receive the fellowship I applied for, but I understood that this project is about creating my own representation so, which was necessary because multiple sclerosis is often portrayed as a thief that steals the capability of those people that it infects.

I was not comfortable seeing myself as incapable because I have capability, maybe even a great capability. Why not? Either way I have decided to try and that in itself is a capability.

I am trained as an Artist – I am documenting my stories and creating my own representation

Don’t eat figs off the ground

It is the part of the Year where the Second Harvest of speaks is here and sometimes they fall off the tree and I remind myself not to eat them

My Hand Is Useless

My hand is really useless. It’s it’s in a claw most of the time sometimes my thumb goes under my index finger. At night when I’m sleeping and I wake up at 4 in the morning is the best time but I’m at Cross purposes there because it’s also the best time for being asleep. It’s hard to move around and to get up and to do anything really.

I’m really bad at that delivering hot sauce and that is a challenge now. My clients are understanding and they often give me a hand. I guess that works but it is not right for a long-term solution. If people know they have to help me that will factor in to whether or not they buy from me because it is an added cost on top of what they pay for my product.

It’s made falling more difficult because I can’t protect myself with my right arm so often time I will protect myself with my left arm and then I have right shoulder and face will hit the ground or the table or whatever I reach out to grab with my last time. I can’t block I guess. So I’m getting the crap kicked out of me in addition to having a useless arm and Claw hand.

It’s pretty tough but it’s good to say that here. Just to say my hand doesn’t work right now I’m trying to work and it’s pretty tough. That makes me feel better thank you for listening to it.

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Season 2, Episode 12: Antacids

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Welcome Whats The Matter With Me? Season 2, Episode 12: Antacids

  • 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

  • Recap- last episode was all about trigeminal neuralgia support groups, grantwriting – writing an essay, KFJC

Shoutouts 

  • Shoutouts to rocky, she’s emailing me stuff, email me and i’ll give you a shoutout

General Confusion

General confusion and the inability to think of anything much at all last week. 

Giving up everything

I felt like giving up on Hoppin Hot Sauce. It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn’t even have a thought about that, to evaluate it. There were no brain waves.

Action

I started to question my medication., because I was feeling so bad.   Then on Thursday at the end of the day suddenly I snapped into action and begin to realize just how much I had to do. I had to pay some people and sell sauce and balance my books. I got a haircut and I’ll probably cook dinner for the family. I think it’s going to be vegetable pasta with tomatoes and grilled zucchini and roasted red bell peppers because we have all that around. And lots of Parmesan cheese. 

Antacids

On the advice of my therapist, I started taking antacids with my afternoon pills, not an empty stomach, and I saw an improvement.  I no longer question reality all afternoon.

AI Wakeup

What does my day look like? What does my dad look like? What does my d*** look like?  Why doesn’t artificial intelligence know what I need to see first thing in the morning?

Antacids over AI

In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.

Download

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Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out.  Contact me here.

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Season 2, Episode 11: Grantwriting

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Welcome Whats The Matter With Me? Season 2, Episode 11: Grantwriting

  • 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.

Shoutouts

Shoutouts to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.

Last episode Recap

I interviewed free jazz legend peter brotzmann on the radio, I resigned from my radio show, I had a challenging vacation, im working on Hoppin hot sauce as usual

Trigeminal Neuralgia Haikus

Trigeminal neuralgia support group is pretty intense. People have a really hard time with the pain and it comes very hard and pretty much destroyed their life. Their status updates when they put how hard it is into a one-sentence post it is very Stark to read it.. like a haiku from hell

Grant application

I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don’t know about all that but I can tell you it was great to put together an application. I wrote some essays that really clarified why I am doing This. I’m going to share one here but before I do I want to ask that you please don’t judge me I just tried to write an essay and I’m not great or anything I’m much better at talking like I’m doing right now but anyway here it is:

Q: Why are you interested in disability advocacy? What are 1-2 issues that are important to you and why?

Too often disabled voices go unheard. We are discussed but we aren’t part of the conversation. I have always believed that direct action is the fastest way to instigate change. Our voice is marginalized, and using our voice will make it stronger.

As we tell our stories in our own voices, we create our own representation. We’re represented as living a life not worth living, wirh meager intellectual abilities, unfeeling and incapable of love; as purposeless mistakes. This distorted simplification is very unfair to say the least. To avoid it, we must take back the way we are represented. We are our own best advocates.

In 2017, I created the What’s The Matter With Me? podcast to share my experience as a 39 years old husband and father of two, small business owner with multiple sclerosis (MS). I recorded 33 episodes in Season 1, and I’m currently 9 episodes into season 2. I went online to find podcasts about MS from the patient perspective, and they were few and far between. In response, I started What’s The Matter With Me? to tell my story, so that a story like mine would be told. As I’ve produced the episodes, more and more people with disabilities have reach out to me saying how much it has meant to them. I have created a kind of feedback loop: I support others and in turn they support me. I am in greater touch with my disabled community, especially younger people dealing with disability earlier in life when expectations for robust health can be higher. We need to raise our voices in order to be heard.

KFJC Impact

Even though I resigned from my weekly radio program I am still active at kfjc,. Lst weekend I took my family to a fundraiser event at streetlight records here in San Jose and it was good to see people. And then a couple of days ago I went to the weekly meeting where I reviewed some music and recorded some scripts for production spots that we will make for the fundraiser which is coming up in October.just silly stuff asking for money but I’d like to be part of the community at kfjc which is a bunch of burnout to like music just like I do.

One of the listeners from my radio show has since joined the station. she has some disability and says that I inspired her to join. One day she called during my show and told me that she knew someone else who worked at the station and she listened to my show and she heard from her friend that I was disabled. I encouraged her to join the station because it was rewarding and it was something that a disabled person could definitely do and it was a great group, a great and supportive community So I’m very glad that she joined Kfjc and it was great to see her at the meeting.
that’s another episode in the books thank you for listening.

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Season 2, Episode 10: Monterey

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Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 10: Monterey

  • 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.
  • Download the Whats The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Episode 9 Recap

Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.

Watering the garden

I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time.  It’s fixed now.

Peter Brotzmann, the Machine Gun

I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds.  He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh

No more radio gig for a while

Resigned from questionable Traditions.  It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that.  I must admit to feeling some purposeless. However …

I have a purpose, and it is

Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.

I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!

Monterey

We went to Monterey on vacation.  It was frustrating because I felt very limited by disability.

Aquarium

We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk.  I hope my kids had a good time, I did not.  It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.

Cram it in

When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.

On the cliff

I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.

Bathroom death scene

The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.

I have such a hard time on vacation because I can’t do what I used to. I need to figure out a new way.

Trigeminal Neuralgia

I’ve been going through lots of trigeminal neuralgia.  I’m switching from one medication to another.  It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms.   More about TN in S2, E6: Awaker.

Thanks for listening

Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.

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Pool2018

Season 2, Episode 9: Swimming

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WTMWM? – S2, E9: Swimming

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming
  • 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 (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast 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.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

 

Episode 8 Recap

Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting.

Shoutouts

Shoutouts to Eric who told me he’d been listening to my pod.  Eric lives in Sacramento so he was digging the Sacramento episode.  Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy.

Fall Down Seven Times, Stand Up Eight

Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to “it’s not whether you win or lose, but how you play the game.” It’s different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.

Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn’t search for things on the internet. Certainly sometimes it’s plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record.

Swimming

On John John’s 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn’t be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.

When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. “I wanted to get down on the ground and then go into the pool,” I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn’t feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.  

When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.

I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment.

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