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.

Episodes:

Flyer on table

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.

Beach

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.

reddit

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

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

  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis so I made this podcast to share what I’m going through.
  • Whats The Matter With Me? is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

Last Episode Recap

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

r/MultipleSclerosis Thread

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

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

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

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

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

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

R

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

Discussion… Things Get Interesting

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

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

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

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

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

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

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

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

People Say You Can’t Accomplish What You Want To

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

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

No Offense

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

There Is A Place For Each Of Us

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

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

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

I Felt Judged

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

No Spring Chicken

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

Thanks for listening

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