A reporter for KCBS News reached out and interviewed me about supply chain, multiple sclerosis, and Hoppin Hot Sauce.
Welcome to the What’s The Matter With Me? Podcast Season Six, Episode 21 “I was on KCBS”
The media onslaught continues!! You might remember that on last week’s episode, I made the paper here in San Leandro. A reporter for KCBS News reached out and interviewed me about supply chain, MS, and Hoppin Hot Sauce. Check it out:
Also in this week’s episode:
NBA Finals One-handed basketball player Hansel Emmanuel Gatorade commercial
Memphis has offered Hansel Enmanuel, he tells @On3Recruits.
My knee is feeling better and stronger, and I haven’t been taking any drugs for it because it’s basically fine. Still, I’m not walking that well over all
I went to Walmart to get propane tanks for the grill and it was an ordeal getting around the huge store.
Last week, I put my shirt in the wash and I took a sad gray t-shirt selfie instead. I apologize for appearing so dour and for the bait and switch.
We went to west coast craft at Fort Mason in SF. It was a pretty crowded event with lots of cool beach towels and other things. As I rolled around in my chair, I was at butt level.
Lamps there were $5, 6, 12, 13 & 19 hundred dollars.
On eBay there are a lot of cool old lamps for less than $100 – used or not, an old lamp makes new light
Koko’s birthday party was well attended, she felt celebrated and she got a lot of presents
It made John John mad with envy and reduced him to a blubbering sniveling wreck
As a consolation prize, he made the all star team in baseball. The game is this weekend. He’ll get a t-shirt
dall e mini made strange radios that look like like a bottle of hot sauce and a bizarre faceless all-star baseball team
What things look like to a computer IWhat things look like to a computer II
KCBS is so big that the weather report is basically useless. I got to give my message about being a disabled person and going for it anyways.
We tried a new truck, the Tacos el grullo truck in East Oakland. I had 3 al pastor tacos. The street had cars swerving to avoid potholes and Scrap metal
Last episode I played “Ian” from last year to end the episode.
https://whatsthematterwithme.org/wp-content/uploads/2022/06/i-was-on-kcbs.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-06-17 17:49:142022-06-20 17:11:03I was on KCBS
last borscht thing: Matt came over and had lunch and he said “it was the best borscht I’ve ever had.” Nami was there
not like he’s Lithuanian or anything.
I think Lithuanians eat it cold
Steve was talking about white borscht
Shout outs to Nathan Mary Butters and Tibby- thanks for the catnip hot sauce
Very Stable Genius is a good neck tattoo
I went to reddit to see if there were any posts about Epstein-Barr causation and there was only one in the Multiple Sclerosis forum and the study was met with an ambivalent reaction
We had white beans, kale, and dry chorizo stew. i talked to the butcher about the dry chorizo — joe: “is it chorizo, or is it choriz?”
https://whatsthematterwithme.org/wp-content/uploads/2022/01/mvd-update.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-01-26 17:37:582022-02-11 20:26:48MVD Surgery Update
I recorded this message on lockdown. I can’t go anywhere due to the coronavirus pandemic and my multiple sclerosis condition. I’m in my house with my family, trying to educate my kids and keep their development on track. We’re taking a crash course in distance learning, e-learning, online education, or whatever it’s called, sooner than any of us thought.
LOCKED DOWN in California. Using my wheelchair to get around the neighborhood. Spoke to the teacher in a Zoom conference. Distance learning, ready or not. In the virtual classroom. Online learning resources from the library. Immersed in the distance learning environment overnight. I may be related to teachers. Spanish lessons.
Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 7: It’s My 40th Birthday
Coming up in this episode: pain and anxiety, brain damage, the beauty of nature. Hanging out in the backyard, it’s my 40th birthday. I’m thankful to be here processing my emotions and symptoms. Come hang out with me.
Welcome to the What’s the Matter With Me? Podcast, Season 3, Episode 4, Mobility Assistance, in which we go on a trip to Sacramento where I finally admit to myself that I need a scooter, plus fictional characters with MS. I made some new tunes and more. Stay tuned. Check it out.
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 can be downloaded on Apple Podcasts, from WhatsTheMatterWithMe.org, or wherever you get it.
I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.
Shout outs: first of all, come on. What’s up? I’m nothing without a shout out. I’m a shout out machine. You put a quarter in me, I’m just like, “Shout out, shout out, shout out.” Shout outs to Patrick, and shout outs to Emma. Give me an email– Contact me on the– Give Me An Email using the contact form, and I’ll give you a shout out.
All right, recap. Recap, recapitulate, recapture and wreak havoc. Last episode, I’ve received my MS medicine by infusion. There was a reiki lady. She gave me reiki, and check it out: Season 3, Episode 3, Infusion. It’s up on WhatsTheMatterWithMe.org.
I went to Sacramento and horned in on my cousin’s life for four days. I dominated his house and mind, I’m sure. I have profound apologies, but now that I have MS, I’m working up to a trek. I can’t really travel, you know, so I’m working up to it. I want to go to the Monolithic Rock churches of Ethiopia, and I want to feed raw meat to hyenas on the end of a stick. But for right now, I go to Sacramento. It’s just two or three hours away by car. I do a lot of weird stuff. In addition to invading my cousin’s life, I visited the capitol building. I met with my assembly member, Ash Kalra, representing the 27th California Assembly District, where we live here in San Jose. We sat in his office with John John and Koko, and I like to do this where … I’m not really into politics or any … But I like to show kids things. I wanted to show them that politics is a real thing, and the government is real. Real people are involved. It was cool.
So we went in to his office, Ash Kalra’s office, and we took a picture with him. We talked with the kids about where they went to school. He was cool, and I was glad to show that to the kids. The capitol building politics is as strange as you think it is. It’s very strange. Hopefully the kids picked up on that, and they won’t become politicians, hopefully. But you know, it’s probably the other way … Everything goes wrong when you’re a parent.
We ate at Frank Fats, a Chinese restaurant, an old Chinese restaurant, in Sacramento, but it’s like a political, rubbing shoulders kind of restaurant nowadays. You can get an awesome martini, and fried wontons, weird stuff.
We ate also at Juno’s Kitchen and Deli. It’s like a casual deli, but they bake the bread in the house, and it’s kind of more refined than you expect it to be. But it’s good for the family, and it’s cool. We go there. It feels like a gem, kind of thing. They like Hoppin Hot Sauce there, and they have the bottle. So when I walked in there, they were like, “John!” You know, and I was like, “Yeah, I’m on the bottle,” you know what I mean? My name is known. Juno’s, Juno’s Café and Deli, check it out in Sacramento.
The tourist area of Sacramento has the worst name. It’s called Old Sac. I mean, for real. The central tourist area, they’re like, “Welcome to Old Sac.” You call up your friends. You’re like, “Hey, guys, let’s go hang out in Old Sac.”
McKinley Park is like this giant green space park with a duck pond in the middle, and a kids playground, a really big one. Kids wanted to go there every day. We went to Sutter’s Fort. Went to the Crocker Art Museum. It’s a cool, modern museum built around an 1870s mansion, and it has a big collection of plates, African headrests, and California works on paper, old pictures, ceramics. It’s like a mix of things. The mix of architecture with this mansion, 1870s, big mansion, beautiful flooring, parquet floors, other kinds of floor. It’s pretty amazing. And then a modern museum kind of built around it. But I had mobility issues.
After I walk for like half an hour, it starts to get hard to walk, and the pressure exerted by my AFO leg brace on my ankle and the top of my foot is too much after a while. It’s carbon fiber on bone, and eventually I can barely walk. I realize my AFO allows me to walk, but I can’t go take a walk. So I’m like hobbling through the 19th century mansion in pain, and I’m unable to move my eyes from the floor, or I’ll risk falling. And I decide, that’s when I finally capitulated. I’m like, “I’m getting a scooter.” And I told Nami, and of course, she’s very supportive.
A few years ago, I saw a rehab therapist who advised me to get a folding, portable scooter. She asked me, “Imagine a party at the end of a long path, far from the car.” Did I want to spend my energy on the path, getting there, or at the party itself? It was kind of like an easy question, but I was afraid of the answer. And I said to myself, like, “Oh, I’ll be fine. I can make it.” But I’ve gone to enough events with Hoppin Hot Sauce, or family events, school events, had enough trouble maneuvering, almost falling over, endless treks through 19th century manors. It’s true. My brace helps me walk, but not to go on a walk.
Like the AFO before it, the scooter is a choice born out of necessity that effects my appearance to the outside world, and it requires me to let go of a bit of vanity, not by my own choice. And just to write that out, to say this feels healthy. It feels good, and valuable to accept reality. Acceptance, move onward.
What about the way characters with multiple sclerosis are represented in the culture? I’ve been reading this book. I’ve been reading 2666 by Roberto Bolano. It’s a novel I selected. I picked it out because his earlier book, The Savage Detectives, was compared to Jack Kerouac, and as a kid, I always loved that. And that’s the reason why I didn’t read Savage Detectives. I was like, “I’m not going to read that. It’s kids stuff. I used to like Jack Kerouac when I was a kid, kid stuff.” But then I saw this huge book in the bookstore, 2666, at the used bookstore. And it was in good condition, hardcover, so I was like, “I’ve got to get that.” It was a good price, and I was like, “That guy was the guy who was compared to Jack Kerouac.”
Now, there’s this huge book. He’s a Chilean guy, died in 2003 at the age of 50. At the bookstore, I skimmed a few pages, and it was like one of these manifold themed books unfolding all different kind of writing. It was like Borges and Murakami. It was like a serious novel. It was a big and powerful book, with lots of different interesting stuff inside, revolving around an elusive, fictitious, elusive German author, and an unsolved and ongoing murders of women in Santa Teresa in Mexico, based on Ciudad Juarez. And I was like, “This is cool. This is weird and cool.”
In the book, a group of scholars are searching for this German author, and one of them has MS, and he’s in a wheelchair. And he goes on a trip to London from Turin. And it just says, “He had to rest after.” And I was like, “Oh, it’s fatigue. He has MS fatigue.” And so it’s like depictions of MS always interest me. I hop all over them, and read into them, and interpret them, and I’m hoping MS will get the same nuanced treatment as everything else in the book, with the same level of almost crazy care.
Here, I’m going to read another bit, where the character with MS decides not to go to Mexico.
“At the last minute, Morini decided not to travel. His ill health, he said, made it impossible. Marcel Schwob, whose health was equally fragile, had set off in 1901 on a more difficult trip to visit Stevenson’s grave on an island in the Pacific. Schwob’s trip lasted many days, first on La Ville de la Ciotat, then on the Polynesien, then on the Manapouri.
“In January 1902, he fell ill with pneumonia, and nearly died. Schwob was traveling with his Chinese manservant, Ting, who got seasick at the drop of a hat. Or maybe he got seasick only if the sea was rough. In any case, the trip was plagued by rough seas and seasickness. At one point, Schwob in bed in his stateroom, and convinced he was on the verge of death, felt someone lie down beside him. When he turned to see who the intruder was, he discovered his Oriental servant, his skin as green as grass. Only then did he realize what kind of venture he had embarked on.
“When he got to Samoa after many hardships, he didn’t visit Stevenson’s grave, partly because he was too sick, and partly because what’s the point of visiting the grave of someone who hasn’t died, Stevenson, and Schwob owed this simple revelation to his trip, lived inside him.
“Morini, who admired Schwob, or more precisely, felt a great fondness for him, thought at first that his trip to Senora could be a kind of lesser homage to the French writer, and also to the English writer whose grave the French writer had gone to visit. But when he got back to Turin, he saw that travel was beyond him, so he called his friends and lied, saying that the doctor had strictly forbidden anything of the kind. Pelletier and Espinoza accepted his explanation, and promised they would call regularly to keep him posted on the search they were undertaking, the definitive search this time.
“Norton felt somehow insulted by Morini’s decision not to go with them. They didn’t call each other again. Morini might have called Norton, but before his friends set off in their search for Archimboldi, he in his own way, like Schwob in Samoa, had already begun a voyage, a voyage that would end, not at the grave of a brave man, but in a kind of resignation, what might be called a new experience, since this wasn’t resignation in any ordinary sense of the world, or even patience, or conformity. But rather, a state of meekness, a refined and incomprehensible humility that made him cry for no reason, and in which his own image, what Morini saw as Morini, gradually and helplessly dissolved, like a river that stops being a river, or a tree that burns on the horizon, not knowing that it’s burning.”
Something cool about that, I like that, “A tree on the horizon on fire that doesn’t know that it’s burning.” That’s kind of how it is, a meek, dissolution, MS. I think there’s something … This guy is a perceptive author. There is something he knows, pretty cool.
There’s new music. I made new music. It’s pretty strange. I make it all with my left hand, because of my right hand doesn’t work. It’s kind of this weird, synthetic jazz process. So there’s a new tune called Suda. You can hear it, Soundcloud.com/john-hoppin.
Thanks for listening to Season 3, Episode 4 of the What’s the Matter With Me? podcast, Mobility Assistance. Find other episodes at Apple Podcasts, WhatstheMatterWithMe.org, or wherever you get your podcasts. The 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!”
Welcome Whats The Matter With Me? Season 2, Episode 13: It’s Fall
… when they came to get the doctor, right away something was different. It was my first time working with a disabled care provider. It was great. I thought that was great and I told her so. I said, “Hey man, it’s cool what you’re doing. It’s cool to see someone disabled as a care provider. I really like it.” She had a disability you could see right away looking at her. It made her work more complicated, but she had hacks and workarounds just like I do, except she sat in the doctor’s chair.
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
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.
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.
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.
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.
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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