I am a husband and father with multiple sclerosis (MS) and that affects my life and work in many ways. Trained as an artist to imagine the possible, as a disabled person with MS I also experience the hard truth of physical and cognitive limitation. On the What's The Matter With Me? Podcast I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges to his caregivers, doctors, the disabled community, and community-at-large. As the owner of Hoppin Hot Sauce, I experience firsthand the special challenges faces by disabled entrepreneurs.
Writing Fundraiser Scripts
* The annual fundraiser is coming up at KFJC starting at the end of the month.* I've been recording fundraiser spots for about 6 years. my first one was about a person taking a taxi. I do one or two a year. * I always enjoy writing, and every good spot starts with the script.* This year, I wrote four, and I read them in this episode, along with an older one from 2016 that resonated with me.* Writing these scripts has been a positive creative outlet.
You are tuned into the What's The Matter With Me? Podcast. My name is John. I'm 41 years old, husband, father of two, small business owner, radio DJ, podcaster. I have multiple sclerosis, so I made this podcast to share what I'm going through. Fundraiser at KFJC, it's coming up. I want to focus on the radio this episode, because I've been doing a little work with that and I want to share it.
Fundraiser is coming up at KFJC at the end of September, to the end of October. I've been recording fundraiser spots for KFJC around this time every year for about six years. My first one was about a person taking a taxi. I do one or two every year or so, so I've wanted to read you some of the fundraiser scripts.
Because we're kind of distant, I haven't been able to go into the production studio, so I've been producing at home. On Tuesday nights, they've been having these production meetings with people that basically gather on Zoom, and then we bang out some spots. I know from some experience that a really useful thing when you're trying to make fundraiser spots is to have scripts for them. You need something to go. You can't just make it up. I came to the meeting. I had four scripts ready and I wanted to read them to you here, so hold on a second.
I'm reading my KFJC fundraiser spots, the ones that I wrote for this year on the What's The Matter With Me? Podcast.
On KFJC, they know me as Hemroid the Leader. Hemroid the Leader, I tell them. You are listening, you're tuned in the KFJC. I am Hemroid the Leader. I came up with that when I was 13 or 14. In the CD, or actually I have it on cassette tape, the insert that came with the album De La Soul Is Dead, which is the second album by De La Soul, what was their hit song? Me, Myself, and I. "Just me, myself, and I." Anyway, that was their first album. It was a big hit. Their second album was weird and strange. It was not a hit, and inside it… Although it's totally a great album. I'd recommend De La Soul is Dead. Like a lot of albums that aren't hits, it's a really good album.
It has in the back, they have skits. A lot of rap records at that time had skits or interludes or whatever, and the skit number five… First of all, the album was almost 30 tracks long. So right there, it's not a hit. Check the no. Is this enough, 30 tracks? Probably none of them. You hope one. That's so many tracks to have none of them be a hit. Anyway, on the last skit, skit number five, I think it is, five or six, Prince Paul, who's a famous rap producer is playing the ringleader of this crew that is starring in all the skits. So it's like a prog album, and we're on the fifth skit with this team of guys and they get into an argument. Prince Paul says, "I'm Hemroid. I'm the leader!" And so right then when I was 14 or 15, I got my first radio show on KSCU, Santa Clara University, and I was like, "I'm Hemroid the Leader." So when I moved back to the Bay area in 2013, 2014, started getting involved with KFJC. And I was like, "My name is Hemroid the Leader."
So this, I want to read to you, are Hemroid the Leader's fundraiser scripts. I brought them to the meeting on Tuesday, and I was like, "Hey guys, anyone want to record these?" and they did the Zoom screen share thing.
Under a Martian orange sky
* I saw the surgeon who performed my microvascular decompression surgery.* I went to my Ukrainian dentist a couple of weeks ago, she is the one I called, “The Iron Curtain.” * I am not in trigeminal neuralgia pain anymore , and my life has changed for the better.* Now that I can shave my face, I've been wearing a mustache.* I am a lot happier.
Still under lockdown. Touching base with the podcast, stirring the pot.
* John John broke the power button on my computer so it's at the tech support* In a week it will be six months of the coronavirus shutdown* Shout out to Brian and Katie* Mom's birthday today. Oysters and cake* 4th week of school* Backgammon* The comic garage 10 comics a month 21.99* Spanish posters, letters, numbers, colors, feelings* Maps of the world* English motivational kindness posters about being a buddy not a bully
JOHN HOPPIN: You are listening to the What's The Matter With Me? Podcast. Thanks for tuning in. This is really just to touch base because I've been out of touch for so long. I wanted to let you know I'm still here. In a week from now, it'll be six months of the coronavirus shutdown. I remember March 13th was John John and Koko's last day of school in-person instruction.
John John broke the power button on my computer. So it's at the tech support guy. I used this guy in downtown San Jose. Hey Nami, what's that guy's name? Big Tech Geek or something?
NAMI: Super Tech Geek.
JOHN: Super Tech Geek! This guy supertechgeek.com. Check him out, Super Tech Geek, supertechgeek.com is his website. He's fixing (my computer) … he's hacking together a power button. John John broke the power button because he slammed on it in anger, when I told him to stop playing Roblox, and go take a bath. He's like, struggling with that kind of anger management. So it's at the tech support. It's not a great time to have a broken computer, but I have a laptop that I can use to back it up. But, everything is all broken. And I have to do my business. It's a significant hiccup.
I want to give shout outs to Brian and Katie, definitely be sure to email me via the contact form, and I'll give you a shout out. Thanks for listening.
It's my mom's birthday today, and so we picked up some oysters and some cake at the supermarket.
It's John John's fourth week of school. That's been hard, man. No lie, but it's hard for everyone. I've been trying to invest in the kids. And I really feel like I'm giving John John a lot of stuff. I don't really know what to get Koko.
I think maybe some toys or something. We have backgammon. We found it. I played that with John John. I play some Battleship sometimes. His birthday was at the end of July and I got him a subscription with a place called The Comic Garage and they send him 10 comics a month for 22 bucks. That's pretty good.
I just ordered … I wanted it to be more like school and that educational vibe around here. So I ordered on the online a bunch of Spanish posters with like bright colors and they have the letters and the numbers and your feelings and names of colors. I also got some maps of the world. I got one for Coco and one for John John. So they can look at the world and see where people are in the world. And I got some English motivational kindness posters about being a buddy and not a bully.
So that's kind of it. I'm scrambling. I have a broken computer. It's still this shut down, uncomfortable thing. I'm trying to get John John through school, it's working. He's enjoying reading. The comics thing is really working. He got his first 10 comics on his birthday. And then now a month later, he's got his second 10 comics. And they came through and he was still stoked and into it. And I hope that the bright colored laminated posters and maps I got will remind the kids of school and make them happy.
Using Our Voice Makes It Stronger
Disabled voices are just like regular voices, just like anybody. Using our voice makes it stronger, and it's doubly true for disabled people who've been disenfranchised, and hidden away, and censored.
JOHN HOPPIN: What these people said really impacted me and really moved me, so I wanted to talk about this.
Welcome. Thank you for tuning in. Welcome to the What's The Matter With Me? Podcast.
My name is John. I'm 41 years old, husband, 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. Also, it's about other things.
I'm not a medical professional. You should not take this for medical advice. If you need medical advice, ask your healthcare provider.
The article that I'm looking at today is from the New York Times.
Dateline, July 26, 2020. We're 20 Percent of America, and We're Still Invisible. Disabled Americans are Asking for True Inclusion. By Judith Heumann and John Wodatch. Ms. Heumann is a disability rights advocate, Mr. Wodatch a civil rights lawyer.
"On July 26, 1990, President George Bush signed the Americans With Disabilities Act into law. Like the Civil Rights Act of 1964, the A.D.A. was watershed legislation, the culmination of a decades-long campaign of organized protest and activism. It, too, was a victory in the struggle for equality for a group of people that had been systematically denied basic rights and access to public spaces and services.
"On the 30th anniversary of the law, it's only natural to want to celebrate. And we should. Yet just as many of the injustices that the Civil Rights Act aimed to eliminate are still very much with us, and still being resisted, the full promise of the Americans With Disabilities Act has yet to be realized. We are not yet where we need to be.
"Historically, disabled people have been hidden away. Disabled people can make nondisabled people feel vulnerable. This situation is thrown into sharper relief when we compare our visibility to that of other identity groups. If you're unconvinced, try this experiment: Randomly look at any 50 print advertisements. You will no doubt find racial and ethnic diversity. You'll see women and men of different sexual orientations. You will see gender fluidity and people of all ages. What you won't see, or you'll see very little of, are representations of disabled persons.
"This is just one expression of how the stories of our lives are excluded for general public discourse. Even though it's common for a disability to overlap with identities across the spectrum of minority groups, fighting discrimination on the basis of disability continues to take a back seat in our national consciousness."
There's a discussion about A.D.A. accommodations. And skipping down, she continues, "Requirements like making playgrounds and movie theaters accessible, providing sign language interpreters in emergency rooms or accessible websites for registering for community programs have been life-changing. But only when people with disabilities routinely work and play alongside their fellow citizens will deeper change occur.
"The Individuals with Disabilities Education Act and its predecessors have required inclusive education since the 1970s. And we have seen firsthand how the attitudinal barriers long common in this country are di...
Compounded trauma is when things make us upset, because they remind us of traumatic situations that we've experienced before, causing us to relive them.
When I feel this way, naming the feelings I am having, and explicitly connecting them, can be a way to overcome them.
The thing is, my wife likes creepy stuff. I don't like watching surgery. When the scalpels come out, I check out of the movie.
Thank you for tuning in to the What's The Matter With Me? Podcast. This episode is about compounded trauma, reliving trauma, traumatic experiences that we've had, and just living and multiplying, compounding them, living them over and over again.
You're listening to the What's The Matter With Me? Podcast. My name is John I'm 41 years old husband, 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.
Every thing went nuts last week because Marc Maron mentioned my hot sauce on Instagram and hundreds of thousands of people follow him and of these people, there's a hardcore kernel of supporters that do whatever he says. So, a lot of people bought Hoppin Hot Sauce last week. Those people are good, they're welcome to the movement. Hoppin Hot Sauce is a movement, the Pepper Show is a thing, get down or lay down, welcome to the team.
But don't get it twisted, you're listening to the What's The Matter With Me? Podcast, talking about compounding trauma, living it over and over again.
I want to give shout outs first
Give a shout out to Katie, my old friend, Katie. Katie said that she actually listens to Marc Maron's WTF podcast and my podcast, What's The Matter With Me? on the way in to work. *child yells* Anyway, that's Koko, the kids are around. I'm just like you guys. Everyone's in the house going nuts at all times.
Anyway, Katie wrote me an email, shout out to Katie. She turned me on to the Marriott. We would go there and at the Marriott, they have like a lounge for guests and visitors that they would stock with newspapers. On our lunch break, we would just go hang out in this lounge. Pretty much take over half the lounge and kick back. I had a couple other friends I worked with, Matt, Jeremy went up in there. Anyway, Katie, my old lunch buddy.
Shout outs to Julia. Julia wrote me a cool email. She's been listening since I was on the YEG MS podcast hosted by Sean Wingrave, an MS podcast out of Edmonton, Ontario.
*child yells: Frog and Toad are Friends!* Anyway, Frog and Toad Are Friends, things are happening around here.
(Julia) said she was just diagnosed a year ago. She made a cool art piece. She was inspired by the interview I did with Sean. We talked about Japanese proverb about fall down seven times, stand up eight and she made an artwork. She sent me a picture. Anyway, pretty cool. You give me an email via the contact form. And I'll give you a shout out. You send email, I give shout out.
All right, it's the What's The Matter With Me? podcast.
Let's get into the meat of it, compounding trauma by reliving it.
I was having a dream or watching a video or television. I can't really remember, but I was having a dream of vision. I was having a vision of a doctor diagnosing a patient,
To overcome isolation, we need to put ourselves out there
We all need to put in effort to get ourselves out there, because it can be hard on your mental health to be so isolated. It's important to be part of a community, and be involved, and have exchange with people.
* I've been spending a lot of my creative effort trying to keep my business open.* Crippled crisp review is two disabled Dutch comedians eating potato chips together. * I have begun producing radio shows in my home Studio. The first one will air Thursday.* People are experiencing part of what it is like to be a disabled person.* It is hard to get around. Hard to participate. Hard to interact with each other. It can be isolating. For our mental health, we need to get out there.
JOHN HOPPIN: All right. What's The Matter With Me? podcast. Thank you for tuning in. Sorry, I've been kind of out of it. I haven't been here in a couple months. I have recorded a couple of Hoppin Hot Sauce Pepper Shows. I've been spending a lot of my creative effort trying to keep my business open. Actually, it's kind of working, but it's taking my focus away from What's The Matter With Me? And my focus isn't here as much as I would like it to be. So as much as it's lame to start with the preamble, there it is.
So I've been checking out this podcast called The Crippled Crisp Review. Crippled Crisp Review podcast, it's two Dutch disabled comedians who eat potato chips together. The whole thing is on pause for coronavirus, because they're Dutch people. The last episode that they posted up is about a corona… It's episode number 63, a corona chili extravaganza. It says in the notes, "The episode was recorded through Skype. Thank you for listening. Please stay safe with coronavirus. At this time, you can still eat crisps on your own. However, do not organize parties or attend parties, except when it is an online party. We talk about different chili crisps." So they eat chips and talk about them. One guy has cerebral palsy, and the other guy has multiple sclerosis. It's a interesting listen.
My family is inside brushing their teeth and stuff. I'm in the backyard.
The radio station KFJC where I often volunteer is shut down, and I've begun producing radio shows in my home studio. And the first one will air Thursday afternoon on KFJC 89.7FM, and KFJC.org. The upside of isolation, this shelter and place isolation, is that the radio station has been putting a lot of effort, and they have been, actually, for years, they've been digitizing their catalog and putting it online, so you can produce and stream stuff from home. And here I am, making this podcast, and I'm in a position to produce content. For everybody who works with KFJC, increasing accessibility will make the radio airwaves more accessible, bring more voices. It's pretty interesting. It's cool.
So I'll be on KFJC on Thursday afternoon. It's fun to contribute in that way, because it's hard to contribute right now. It's hard to get around, go places, participate with other people, hard to interact. We can get on the internet, but that's kind of it. And either way, since March in the U.S at least, people are experiencing part of what it's like to be a disabled person. Because you can't go places, you can't see people, and you can't do things the same way. You need accommodations. And so disabled people, because that's difficult, they get isolated. And even look at me, I started a business, I'm on the radio, I have a podcast. All this stuff I do, because I want to overcome the isolation of being disabled. But now kind of everyone's in the same boat. Everyone in our culture needs to overcome isolation. So it's like, I don't give myself enough credit to say, I can teach people something.
Customer ReviewsSee All
Touching, funny, deeply honest, and organic. Highly recommend.
I appreciate this podcast as it heightens my awareness of what it means to have MS, what the experience is like, and opens my eyes/ heart to the disabled community in general. I also appreciate John’s attitude of taking on challenges, reflecting on them, and persevering. He maintains a positive attitude and continues with a vision of what is possible. Inspiring.
I’ve also ordered his hot sauce before and plan to get more when I run out as it is legit tasty! I seem to put it on most things I eat.
God Bless John Hoppin! This podcast is a life saver for those of us facing life newly disabled. I have MS as well and John is providing a beacon for us to follow and giving us a voice not only to listen but to represent us. He doesn't candy coat his situation but he always has a positive outlook on his life which for those of us struggling with chronic disease is crucial. Thanks for being brave enough to share your stories.