I’m 43 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.
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.
Welcome to the What’s The Matter With Me? Podcast Season 6, Episode 30, “Birthday Dinner.”
In this episode I battle face pain with varying levels of success to go to a birthday dinner at Trader Vic’s, take a family trip to the Embarcadero, and have a date at the movie theater.
Shout outs
Shout outs to Jersey Girl who used to work with Judy Huemann
Rode the BART to Embarcadero to watch kids skate off the stairs
Market street Elevators
I was wearing my “SECURITY” t-shirt- from my Halloween costume. Lady came up asking me to defuse a situation with a guy on the escalator. I was in my wheelchair SMH
Welcome to What’s The Matter With Me? Podcast Season Six, Episode 29, “Doors Of Perception.”
In this episode, the door men are at my house installing the Doors Of Perception. They are noisy, but because I’m feeling better, I don’t have to whisper anymore. I was still feeling pretty tough yesterday when I went to see the surgeon to discuss RF Rhizotomy surgery.
“If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”
William Blake, The Marriage of Heaven and Hell
Shout Outs
Geographical shout outs
Shout outs to rocky
Shout out to Mom who reminded me that it’s been 2 and a 1/2 years since I have MVD micro vascular decompression surgery not 1-1/2
Shout outs to Doctor Shuer, who’s already operated on me twice. Isn’t that enough? We’ll see, just stay tuned..
The Church
Mom was trying to get me to be thankful for that time, and I am, but I also would appreciate my surgeon putting an end to this disorder and putting me out of pain. Trigeminal neuralgia is very painful and causes many who have it to commit suicide by how painful it is and I just don’t ever want to be in the place I was before or even being close to it.
Trigeminal neuralgia took me to the house of pain, where I went into the white hot room of pain and took a seat on the sofa of pain.
While I am thankful. I need to get this done with for my family. Shout out to Mom, she’s a Catholic and was taught to be thankful for everything in life and I kind of agree with her. I must admit I can be sympathetic to that. Because everything is here for me and I didn’t do it and I should be thankful for it- OK fine fine
Dear God, please let’s segue
Pronouns
I think it’s fine to call someone whatever they want to be called.
Sanleandrido, Sanlandrida, Sanleandridx.
Getting thoroughly cursed out is triggering and toxic that’s what it’s all about.
Thanksgiving nightmare
I had a nightmare that it was Thanksgiving and the butcher shops were all out of turkey.
The Cure Is: Lemons
One of my friends sent me 1 of these “they’ve cured MS in Canada” Messages and it’s totally unprovable and not linked to any study And it’s kind o,f like the MS cure Where you eat a lot of lemons. Generally I ask my family not to send me MS cure ideas that are like that. I believe in peer reviewed studies And without that you’re kind of just shooting in the dark.. So generally I ask people not to send me things that are unsupported by scientific study.
But frankly it was nice to be thought of and I told the guy I appreciate it. So how’s that for mixed messages?
Hot Mops
The Whisper Episode was 20 minutes. Sorry about that. I’m sure you understand.
I ended I Made The Paper with a song. My wife asked what it was. Hot Mops is my music project that we heard. The thing we heard was called “Ian.” if you’re looking for more of that, find it https://soundcloud.com/john-hoppin
Dr. Shuer
I went to see the doctor earlier today but before that at 8:30am i had a CT scan so I didn’t eat breakfast.
A CT scan is way chiller than an MRI- you’re still mostly in the roam because the hole that you’re in is way bigger
In MRI, you are inside the machine- for CT, it’s not even like you’re inside something. MRI has a 50-60CM aperture. CT scan has an aperture of 75-85cm. CT is shorter and quieter.
Then we had 45 minutes between appointments so i got the peanut butter Jamba Juice quick before I met the doctor. to get calories because I didn’t have breakfast.
My doctor and I discussed RF rhizotomy: they would put me to sleep, insert a needle into my face, then wake me up, send electrical signals through the needle to verify the right nerve, and then blast it with the high frequency RF to deaden the nerve.
It’s a short procedure but its freaky. were going to schedule it and if I don’t need it I wont have it
The Story of signing the consent form and how I wrote my signature.
We talked about how it could reduce my use of pain medication.
Baby Wants To Drive
My wife and I talked about how I cant drive on my current medicine dosage. That is upsetting, it’s like I’m a baby. I want to drive, but I can barely get around my house. It’s a loss of independence. I don’t know how I wont go stir crazy.
Los Pericos Vibe
We ate at Los Pericos on East 14th St. Nami had the vegetarian burrito & I had pozole. It was pretty good. It came with radishes cabbage and onion to dump in and a lime to squeeze over everything and it came together nicely.
I used my wheelchair to order the food and to eat. it was the first time I did that. it was on a pedestrian mall on a Tuesday at lunchtime. It was mostly empty, except for a guy who muttered to himself. He would come up in volume as we dropped down. He was talking about real motherfuckers and fake motherfuckers. He sounded upset about it. in a sense he was really killing the vibe. in another sense its a free country isn’t it? one mans vibe is another mans jibe! then his friend showed up and he was a lot happier. but then they were catcalling women.
BK To The Fullest
If you woke up today and you were an adult male named Brooklyn.
Part about cursing
Sometimes I deserve to be cursed out and sometimes I don’t and when I don’t, maybe I should just walk away and hope for better next time. Perhaps I could avoid ridiculing the person trying to come at me. which is what I often do because I think I’m not afraid of confrontation.
Maybe I should just take a wait and see and find out whether it is a pattern, whether I have a toxic person on my hands. Maybe there are extenuating circumstances.
https://whatsthematterwithme.org/wp-content/uploads/2022/08/Doors-Of-Perception-1.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-08-10 22:44:552022-12-22 22:32:04Doors Of Perception
Welcome to the What’s The Matter With Me? Podcast Season 6 Episode 28, “The Whisper Episode.”
In this episode, I can’t talk with my full voice because it makes my trigeminal neuralgia flare up. So I whisper, more or less. Go on a journey with me through a study about MS & diet, a talk by disability activist Judy Heumann,
LOL
One of my family was on social media saying “So there are reports of Bruce Springsteen tickets going for outrageous amounts of money. Isn’t this something he could control? I’m so confused.” and I was like “Bruce has had it and he’s tired of taking care of you babies. he wants you to pick yourself up by your bootstraps and get your own piece of the American dream LOL”
You can’t do that in 2022, people need the social media echo chambers things are too hard in society RN. LOL
Geographical shout outs: these words are flying around the world,.Thank you for tuning in
Schrödinger’s cat
Sometimes I feel like I can’t do anything, like Schrodinger’s cat. It’s as if the act of trying to do something guarantees that I can’t do it.
It’s bad
The pain in my face has gotten more intense. Thankfully it’s not throbbing, but the nerve is very sore. It’s intense enough that its fogging me up. I can only hope it doesn’t get too much worse before they insert a needle in my mouth and fry me. NOTE: It already has gotten worse.
Disability activist Judy Heumann
I watched Judy Heumann livestreaming on pbs books and I was totally gobsmacked by how great she is, as usual. “My work is to allow disabled people to feel proud of who we are … there is so much more work that needs to be done … to understand who we are … and our desire to be an active part of our communities.” “20-21% of the US population are disabled. 60 million people. Globally, 1 billion plus.”
Judy spoke to an audience of Girl Scouts and said: “You don’t have to accept ‘no.’ If you believe that ‘no’ is wrong, then you need to fight for your right. It may not happen quickly, but if you believe in it, you have to fight for it.”
When I can talk again I want to do an interview with artist Gary Cannone.
Subscribe to get the selfie (and everything else)
The way you get the selfie is to subscribe on whatsthematterwithme.org. Collect them all, Put them in a special folder on your computer. That seems almost like an NFT, and seeming might be enough.
To get an email every time a new episode comes out, enter your email and get on the mailing list at whatsthematterwithme.org.
Small electrical slashes and flashes come back, but a lot quieter since I had micro vascular decompression
In this episode, the return of trigeminal neuralgia: TN discomfort came back. PLUS, Masonic Auditorium accessibility review, autonomous vehicles for disabled riders, and accessible furniture.
Great minds think alike, stupid ones too
I said last time that all my friends came over, but that was an exaggeration
people are leeching the thing, especially episodes about MVD
Burning Spear at the Masonic Auditorium: I ran into dr. Doug and he sat with @namihoppin & I. Then after the show Lurker & Lucky J – cool seats- way up but front and center.. used my chair. The Masonic auditorium was set up well for accessible patrons
https://whatsthematterwithme.org/wp-content/uploads/2022/07/We-had-a-barbecue.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-07-20 20:34:062022-12-22 22:33:32We Had A Barbecue
Welcome to What’s The Matter With Me? Podcast, Season 6 Episode 25, “Are You Here By Yourself?”
People keep asking me, “are you here by yourself?” I’m not sure when I should have someone with me when I go somewhere alone. Whether I’m OK to go or..
Didn’t even want too say anything but what did I tell you- he dumped that nerd and he’s going to the prom with Kelly.
I went to the butcher shop and I got some good looking red snapper filets.
Getting snapper reminded me of the time Anthony B & his band were at Avenida Rotella in South San Jose and they ordered snapper fish
The nerd is going to get more than one billion dollars but He really trashed her. He got her onstage and said she was fake in front of everyone
https://whatsthematterwithme.org/wp-content/uploads/2022/07/are-you-here-by-yourself.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-07-15 00:16:112022-12-22 22:34:00Are You Here By Yourself?
Welcome to the What’s The Matter With Me? Podcast, “Fourth of July”
In this episode, we take stock of the busy Fourth of July holiday week that was full of wheelchair rolls, head injuries and new grilling setups. Plus, we got a new Pepper Show!
Statistical shout outs to places far and wide and thick and thin where people listen to the show.
Have you heard of the disorder where people take s**** in their sleep? Yeah it’s called sleep crapnea.
While I was copying that down my wife was like, “You can’t say that, it has swearing in it.” I was like “Yes I can, I’ll bleep it.” And then she was like, “You have to leave the ‘sh’ sound otherwise people won’t know what word it is.” I was like “I can do that!” And then she said, “Would you please turn off the light?” I said, “Would you please let me write down this f****** joke!”
July 1- Fell and hit my head on the house, like in the old episode It’s Fall. I ordered replacement tips for my stick from REI
July 2- I went to a wedding in my chair, and then I went to the reception in my brace.
July 3- I shopped at Urban Ore in my chair. I went to get lunch at the fried chicken sandwich place and the guy who was next in line had me cut in front of him and I accepted. But then I started to feel weird about the people after him.
July 4- On the 4th I went to San Jose to my parents’ block party where I rode my wheelchair. My mom told me she was happy I was there and that I was in my chair taking it easy. It wasn’t much of a barbecue- I didn’t have anything that was grilled. We had chile verde
July 5- I barbecued a redo of the 4th of July by grilling hot dogs, bratwurst, and corn. A new method using aluminum trays, yielded positive results and the kids gave it positive reviews. For dessert, we had apple pie.
I recorded the Pepper Show and the vibe is more or less soft in the head. But at least I did it. I can do a better one next time.
https://whatsthematterwithme.org/wp-content/uploads/2022/07/Fourth-of-July-3.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-07-08 22:07:142022-12-22 22:34:38Fourth of July
Welcome to the What’s The Matter With Me? Podcast, Season 6 Episode 23, “I Admire You.”
In “I Admire You”, I went to Walmart again. Which means that I like it, maybe. People made unexpected comments to me this week, so I dealt with those as best I could. Hoppin Hot Sauce is back in business. At the Royal Shakespeare Company, disabled actor is playing Richard III, a first. It’s a disabled role often played by someone acting disabled.
Shout outs to Claude Hopper- he listened to the whole podcast. This is the 197th episode
I went to Walmart again, this time for white t shirts
Did your delivery driver go above and beyond?
We sent 8 cases of sauce for Amazon
We sent 18 cases to Williams Sonoma s western region
I was leaving the liquor store Some guy wearing An American Flag bandana And a white goatee asked me if I needed help. I said I was ok and thanked him. It made me question if I should go out alone
Journey to Walmart again
I went to Walmart again and this time I ordered pickup
Before getting in the car I grabbed my trekking pole & 40th birthday cowboy hat
When I got to Walmart I Drove around the whole parking lot 3 times trying to find the pickup spot.
In the end I couldn’t find it, so I went inside
The greeter tried to get me to go to the other side of the store
She could see I was not into that
She told me I could use the app to tell them I was here, but she didn’t know how to do that or what it was called and Neither did I
She said that I could park my car near the garden area
Turning Around to get out of there I moved unsteadily and the greeter reached out to steady me
I used my trekking pole
I went back to my car.
When I was getting in my car a woman in the parking lot said “I admire you. You’re out here, and you’re doing your thing”
Then I drove my car to the Garden area and parked on the curb
There was a sign to call a phone number if you were here to pick up.
I called and no one answered
People with blue vests were walking around my car.
I told one of them that I had called and he said that no one answered because he was the only one working.
He said that he would help me. He went off and came back in a few minutes with the shirts
I don’t know why I keep going to the Davis street Walmart
Elon musk is probably going to have an humblebrag 80th birthday party “humanity is now living well into its eighth decade, by the way I’m turning 80 on Tuesday, btw”
https://whatsthematterwithme.org/wp-content/uploads/2022/06/I-ADMIRE-YOU.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-06-30 23:27:352022-12-22 22:35:03I Admire You
Welcome to the What’s The Matter With Me? Podcast, Season 6 Episode 22, “ADA Bars Keep Me From Falling.”
In the new episode, I have to admit that ADA bars have been useful. Tune in because this episode features sound effects. The guy who taught me to do production was really into sound effects, that was pretty much his only feedback. “Pretty good. You could add a couple of sound effects,” he’d say.
ADA grab bars keep me from falling over.
My mom is the one who let me know that the last episode originally didn’t work, so shout out to mom. I fixed it but still shout outs to mom
Shout outs to Rocky. Rocky also told me she couldn’t download my podcast. When she called me, she was hanging wallpaper.
It’s weird how people say I’m hanging wallpaper instead of sticking wallpaper to the wall.
I fixed the last episode now so go download it
shout outs to the countries metro areas and bioregions tuned in to the What’s The Matter With Me? Podcast
From 11:45pm to 12:30am on Father’s Day, Koko screamed I WANT MAMA at the top of her lungs.
She gets broken blood vessels in her face from screaming
Eventually she calmed down, took a pee and went to bed
An idea for malt liquor eggnog, endorsed by Snoop Dogg, called Stoop Nogg
I have ADA grab bars in my shower but I didn’t want them.
They are big and ugly, but they save my butt all the time. Originally I didn’t want them, because of how they look.
The ADA grab bar in Visalia didn’t work because it was on the right side, far from the flimsy door with a brick step up in between.
When I am washing my face or my hair and I tilt my head back, I can get disoriented.
Koko is going to summer camp and learning new things. She made a lanyard and she likes singing along to the camp songs. She also said, “Whether it’s a little one or a big one, it’s still a wedgie.”
The new hot sauce came in and we’ll start getting it to our accounts right away. its been a year that I’ve been trying to order new hot sauce and I finally have it.
https://whatsthematterwithme.org/wp-content/uploads/2022/06/ada-grab-bars-keep-me-from-falling.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-06-24 00:44:112022-12-22 22:35:30ADA grab bars keep me from falling
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
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
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/2024/01/season-8-wtmwm-logo-1-1.pngJohn2022-06-17 17:49:142022-12-22 22:35:54I was on KCBS
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