What's The Matter With Me? Podcast John Hoppin
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- Society & Culture
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On the What's The Matter With Me? Podcast, I delve into the intricacies of my journey, navigating life with multiple sclerosis (MS) and trigeminal neuralgia. This platform serves as a conduit for me to share not only the challenges but also the triumphs that come with these health conditions. It's a space where I open up about my experiences, providing insights into the daily hurdles and victories that shape my life.
The podcast serves a crucial role in developing my disability consciousness. It's a medium through which I explore and reflect on the impact of these conditions on my identity, relationships, and overall perspective on life. By openly discussing my struggles, I aim to create awareness and understanding, both for myself and for those who tune in.
A significant aspect of the podcast is its role in building bridges—connecting me to various facets of my life. One of the primary connections is with my caregivers. I recognize and appreciate the support they provide, and through the podcast, I express gratitude, share experiences, and foster a deeper understanding of the caregiver-patient dynamic.
In addition to caregivers, the podcast acts as a channel to engage with healthcare professionals. I share insights into my medical journey, discussing treatments, challenges in managing symptoms, and the evolving nature of living with chronic conditions. This connection with the medical community contributes to a more comprehensive dialogue about the realities of these health challenges.
Moreover, the podcast extends its reach to the disabled community. It becomes a platform for solidarity, a space where shared experiences can be a source of strength and inspiration. By being candid about my journey, I hope to contribute to a sense of community among those facing similar struggles.
Beyond the realm of health, the podcast connects me to the broader community. It serves as a window into the world of disabled individuals, breaking down stereotypes and fostering understanding. It becomes a tool for advocacy, dispelling misconceptions and promoting inclusivity.
As the owner of Hoppin Hot Sauce, the podcast takes on an additional layer of significance. It provides a unique perspective on the challenges faced by disabled entrepreneurs. I share firsthand experiences of navigating the business landscape while managing health conditions. This dual role as a business owner and someone with chronic illnesses sheds light on the resilience and creativity required to overcome obstacles in the entrepreneurial journey.
The What's The Matter With Me? Podcast becomes a platform for discussions on disability in the business world. It addresses the need for inclusivity, accommodations, and a shift in societal perceptions regarding the capabilities of disabled individuals in professional spheres.
In essence, the podcast is a multifaceted endeavor. It is a personal exploration, a source of connection with caregivers and the medical community, a beacon of solidarity for the disabled community, and a tool for advocating inclusivity in the business world. Through candid storytelling and open dialogue, it contributes to a more informed and compassionate understanding of life with chronic conditions, leaving a lasting impact on both individuals and society at large.
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Surgery Publication Vacation
Period of Change
Undergoing a period of change: I had surgery, I got published and I went on vacation. Plenty of new music reviews in this episode.
A word
What's The Matter With Me? Podcast is sponsored by Hoppin Hot Sauce. Order it on Amazon.
JWH Live!
Writings By John Winfield Hoppin is live, because my editor said I needed a writer's website. I think it's pretty nifty..
Selfie Edict
Subscribers get the selfie for as long as we all live. It's a lifetime subscription
Shout outs
https://twitter.com/MarchandsPetRat/status/1779926937177358503
Shout outs to Marchandspetrat, hockey s-poster living with MS
Shout outs to Rocky, Cousin Eric
Gotta write up questions
Nerve Bumps (A Queer Divine Dissatisfaction) by Dax Pierson
Upcoming interview subject Dax Pierson
Shout outs to the Sandman who turned me on to James Wavey Snowy Beach, which was added recently at KFJC.
Psychedelic hip-hop from San Francisco
James Wavey Snowy Beach by James Wavey
Publication Dream Comes True
I was accepted on a piece of writing, and for the first time I made a signed agreement. Follow JWH Live! to hear more about the writing.
In the days before surgery
In the run-up to surgery, in a lot of trigeminal neuralgia pain, I increased my dosage and I felt like it was too much. Trying to even things out, I reduced by 25% overall, and it helped return me to the land of the living.
No coffee, no ibuprofen.
On a day when I would usually be recording, I went to the hospital to have surgery, my third RF Rhizotomy and fifth neurosurgery on my trigeminal nerve overall. I had two MVD (microvascular decompression) surgeries to begin with. Recovery is much easier with rhizotomy. MVD literally bores a hole in your skull, and it takes a lot of recuperation to heal. Hospital stay from rhizotomy can be as short as a few hours.
New tunes
In advance of surgery, maybe to take my mind off it, or to give myself something to look forward to, I bought some tunes.
Opera Glossolalia
Spontaneous Musical Invention by Thomas Buckner sings Robert Ashley
Robert Ashley is a composer of 1980s opera. There's a lot of talking in the libretto. The gatefold record comes with a cool book with photos. I really like the Recital label because they have interesting packaging. The record is one of 350.
Instructions?
Whiplash by Asha Sheshadri
This record is like sound art, but at the same time it's a record. I'Layered, specific, related to site. Like getting a bunch of jumbled-up instructions for a treasure hunt, cryptic. Edition of 200.
Chewing Gqom
The Gqom Trilogy by DJ Scriby // DJ Marillo // DJ Skothan //
Gqom is known for its beats which have a minimal, raw and repetitive sound with heavy bass. It is mainly described as having a dark and hypnotic club sound. The style of beats does not use the four-on-the-floor rhythm pattern which is often heard in other house music.
"Gqom" Wikipedia article
Digging this record - I'm new to Gqom, but I like it. The release is by three different DJs, a triple EP.
Drunk in Love by Elvin Brandhi & Lord Spikeheart
This is far out. File under extreme vocal performances. The feeling is metal, but the sound is electronic. Tense, spastic. Questionable in a good way, challenging material.
Numb
Now I'm back from surgery and my face feels different. Talking and eating and I'm sure other things that I'm not noticing are affected. Familiar disassociation after surgery.
It's a matter of deciding how I feel about the things that are different. First, I have to accept them.
Updating the map
After surgery, it takes time for my body to properly calculate changes in sensation, and adjust the body's size map accordingly.
In tune
The piano is tuned
Out on my own
Drove to Oakland by myself and went to a couple of friend's houses for about 3 and 1/2 hours. It was the first time in 16 months. -
Drugged Out
In "Drugged Out," a short episode featuring wine delivery, toilet paper shortage and trigeminal neuralgia pain medication.
Long Time
Subscribers get the selfie for as long as we all shall live. It's a lifetime subscription
Green fluid
Cuts in my hands have been getting infected and filling with green goop
In Our Cups
We got the wine delivery, man, and the wine deliveryman was in his 20s, maybe his mid-20s, and he was really upset about global warming. "Things aren't l really pleasant anymore," he said.
I felt for him. "I feel for you," I said
Toilet Paper Shortage
We still have a case of Bulgarian toilet paper that has no perforations and ripping it feels like tearing up someone's college application, or well-qualified resume printed out on nice paper.
Remember back in 2020, when there wasn't toilet paper? We bought a case of Bulgarian toilet paper and it was like riving a sheet of Bristol board to rip a sheet off. There were no perforations, it was 80% normal size so it didn't fit on the roll,
Thing I Know
I watched the "Taylor Swift: Eras" movie with Koko, so I know about Taylor Swift now. Not sure what, but I know it. The movie is long, but not as long as "Killers of the Flower Moon." She gets into slang patterns thata made me uncomfortable. To get it going, I had to figure out my Disney Plus login credentials, and that, in itself, is a big bonus.
Electric Wire Buried In Flesh
I'm drugged out!
I experienced severe face pain once before bedtime, and then many times (a couple dozen?) after 4am. I cut out coffee, ibuprofen and started going up on my medicine that day, settling on twice of my usual dosage. That was too much, and I became extremely drowsy and experienced visual, balance and energy side affects. Eventually I settled around 175% of my usual dose, which. for the moment, is keeping the pain away and limiting the worst side effects.
Surgery is next week, my third RF rhizotomy. I knew this treatment could recur and that it was not necessarily permanent. Let's hope the third time's the charm.
00:00:00 - Intro
00:00:22 - Shout outs
00:01:08 - Jingle
00:02:00 - "Taylor Swift: Eras" movie review
00:02:13 - Bulgarian toilet paper
00:04:42 - Trigeminal neuralgia returns
00:07:45 - Outro
00:08:44 - Wine delivery -
Spring Concert
In "Spring Concert," an incidental return to Dry Marchuary, a chapbook's worth of poetry and the school's Spring Concert.
From chaos comes order
One way to enjoy Hoppin Hot Sauce is "On Pasta".
In the midst of near-total chaos, small rituals ground us, nourishing both body and soul.
"On Pasta" at HoppinHotSauce.com
Shout outs
Shout outs to schwabino kickin fatal aikido kung fu karate they bout to find your body you better ask somebody mymedia designer.com tell a friend to tell a friend about my media designer
See for yourself
Spring Concert Selfie
My hair is long as it's been since 2009! See for yourself above. Subscribers get the selfie e-mailed to them, they don't even have to do anything, just lay there.
It's an NFT, it's collectible, it's a blockchain. Blockchain sounds like a necklace to me
Lost Weekend Here I Come
The wine delivery is coming tomorrow. In the meantime, we've been back to "One Or Two Beers Dry January-February-Marchuary" mode, just for the past few days. Long live one or two beers Dry January
To go in your chaps
Hippie chapbooks
A chapbook is a small publication of up to about 40 pages, sometimes bound with a saddle stitch.
"Chapbook," Wikipedia
I collected what poetry I have written since I moved here in 2021. It's over 45 pages, and Wikipedia says it's enough to make a chapbook.
Let my children play music
Once upon a time in the auditorium
I went to the San Leandro Unified School District Spring Concert in my wheelchair, to see my son play trumpet in the spring concert.
Once upon a time in the auditorium
Chapter List
00:00:00 - Intro
00:02:47 - From chaos comes order
00:03:21 - Shout outs
00:04:10 - Long Hair
00:05:23 - Wine delivery
00:05:58 - Poetry Collection
00:06:57 - Chapbook
00:09:04 - Writing in Google Keep
00:09:43 - Spring Concert
00:14:27 - Attending The Concert -
I drove
In “I Drove,” getting reacquainted with driving, where did kale come from and borscht out the wazoo.
Iconic trio
At Breakfast is a great time to have Hoppin Hot Sauce.
Just like the iconic trios of Larry, Curly, and Moe, or black, white, and grey, or even the Roman numerals I, II and III, eggs, English muffins and Hoppin Hot Sauce form an unforgettable trio that’s sure to become a favorite in your kitchen.
Shout outs
Shout out to Jersey Girl and Max LevelWe're going to broadcast a game show in MayI'll be the score
No matter what
Selfie
Selfie or no selfie the email is going out - grab it while you are still living, go to whatsthematterwithme.org and click subscribe
I drove
Two lane blacktop
I drove my van. First, around the block. Next, to the library, where I saw men with nowhere else to go walking around the library grounds in the rain an hour before opening. Finally, I drove to Oakland, up 580 and to Piedmont Avenue, to Cato's Ale House. I photographed it from my parking space and texted it to my buddy, lamenting that it was too early for beer. He replied, "It's never too early for beer." It's good to have friends. Shout out to Matt. Turning around, I drove back home.
Where did kale come from?
According to the "kale" page of Wikipedia\, Kale came to America in the 19th century from Croatia, brought by USDA botanist David Fairchild, who did not eat it, who detested cabbages of all sorts.
Borscht
We have a freezer full of borscht. Chock full of borscht, we have borscht coming out the wazoo. My aunt and uncle were in town and we had them over for lunch. We ate borscht.
Two lane blacktop
Chapter List
00:00:00 - Intro
00:00:42 - At Breakfast
00:01:55 - Shout outs
00:02:56 - Selfie or no selfie
00:03:20 - I drove my car
00:04:38 - Fear of driving
00:05:41 - Men with nowhere else to go
00:08:16 - Slash at the Oscars \"I\'m Just Ken\"
00:09:41 - Where did kale come from?
00:12:11 - Dax Pierson interview upcoming
00:13:07 - Borscht
00:13:35 - Aunt and Uncle ate borscht
00:14:09 - Losing
00:14:34 - Outro -
Buying A Used Wheelchair
In "Buying A Used Wheelchair," breaking my wheelchair and buying a new one on Craigslist, more record shopping, cooking borscht and getting accepted for publication.
Every week we order pizza from the place in town. On the day after, for lunch I eat cold pizza with Hoppin Hot Sauce on it.(Hoppin Hot Sauce jingle)
Those who say don't know & who know don't say
Buying a used wheelchair selfie
Subscribers get the selfie and the show notes e mailed to them, and I don't know what they do with them
Record shopping
I went record shopping at Amoeba and it turned out to be a pretty good score:
Something Is Wrong (Vintage Recordings From East Africa)
Fiona Apple, "Tidal"
Black Top Blues-a-rama, Volume 2 Live at Tipitina's, New Orleans
J Dilla, "Donuts"
The record store person gave me "the nod"
Terminal Event
I broke the arm off of my wheelchair, with a bang. The manufacturer was out of stock, but I needed to find a replacement. I got on my computer and I searched eBay and sfbay.craigslist.org. craigslist came through for me
Cooking While Disabled
We made borscht. For the second year in a row, we used this Serious Eats recipe for Hot Ukrainian Borscht (With Beets, Beef, Pork, and More)
Accepted
After an uninterrupted months-long streak of many rejections, a few different editors wrote me to let me know that my writing was accepted. All in all, a piece of microfiction (in this case, a story of exactly 50 words) and two poems. It's very exciting to turn the corner on this project and move from submission to publication.
Chapter List
00:00:00 - Intro
00:05:04 - Subscribers get the selfie
00:06:01 - Record shopping
00:13:36 - Terminal event
00:21:08 - Borscht
00:27:58 - P.T.
00:29:30 - Outro -
Swift Correction
In "Swift Correction," Taylor Swift wrote all the songs, hoping everything's okay, and a sprained knee. But first, I'm programming robots to do my bidding! I can feel it-- success is near at hand.
Automaton I
I spent all day working on an automation to send posts created on the Hoppin Hot Sauce blog out to the mailing list automatically. Automations help multiply my actions which is important so I can conserve energy and avoid fatigue that comes with MS. Hopefully, I can stay in better touch with the hot sauce audience.
Automaton II
Swift Correction selfie
Previously, another automation I made sends new episodes to our What's The Matter With Me? Podcast mailing list. Subscribe today. Subscribers get the selfie along with show notes.
Cool thing
Hoppin Hot Sauce is a disabled owned & operated business
Shoppers at our Amazon store support disabled-owned business
Hope everything's okay
About the time when we were driving and we saw two fire trucks and an ambulance.
My wife said. "I hope everything's okay."
To which I replied, "Clearly, it isn't."
Correction: Taylor Swift wrote all the songs
Correction: Taylor Swift wrote all the songs
My wife texted: "The standard edition of 1989 (Taylor's Version) comprises 21 tracks: re-recordings of the 13 songs from the standard edition of 1989, re-recordings of the three bonus tracks from the original deluxe edition, and five previously unreleased "From the Vault" songs that were written for the 2014 album but excluded from the final track list. https://en.wikipedia.org/wiki/1989_(album) I don't think the Taylor's version are covers."
Of course, she was right. I tried to explain it in the episode, but it's really very complicated.
Path of pain
The path of pain began when I sprained my knee. Unfortunately, I fell in my bathroom, and bent it the wrong way. After that, I was leaning heavily on my cane, which caused soreness in my left pectoral area. The pain traveled from there down my arm, stopping in my bicep, forearm, wrist and hand.
It was painful, like sitting cross-legged but the heel goes outward instead of inward. The bruise was on the inside of my knee. Recovery proceeds, slowly, haltingly; I'm trying to stay off of it as much as I can.
Bueller... Bueller...
I'm practicing for the CBEST California substitute teacher exam.
Correction: Taylor Swift wrote all the songs
Chapter List
00:00:00 - Intro
00:01:43 - Subscribe to get the selfie
00:02:27 - Taking the selfie
00:03:18 - I created some automatons
00:06:22 - Conserving energy
00:07:06 - Hoppin Hot Sauce Jingle
00:07:24 - Hope everything\'s OK
00:08:49 - Taylor Swift Correction
00:14:31 - It happens every night
00:18:28 - The Path Of Pain
00:19:26 - Substitute teacher exam
00:21:43 - Outro
Taylor SwiftAutomatonHoppin Hot SauceMS (Multiple Sclerosis)Trigeminal NeuralgiaPodcastAutomationPain ManagementDisabilitySubstitute Teacher Exam (CBEST)
Customer Reviews
Wonderful.
Touching, funny, deeply honest, and organic. Highly recommend.
Legit good.
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.
Hope
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.