What's The Matter With Me? Podcast John Hoppin
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- Society & Culture
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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Skibidi Toilet Is A Part Of History
In the latest "What's the Matter with Me?" podcast, John updates on his improved sleep with a sleep apnea device, newfound independence loading his wheelchair, upcoming Montana trip, and reflections on anxiety. He also mentions his kids' interest in the viral "Skibidi Toilet" videos.
A Toilet For The Ages
https://www.youtube.com/watch?v=KrlkXOxlvCk
I asked my son about skibidi toilet, and he replied:
It's gone viral.. in fifty years, look in the history books, and there'll be skibidi toilet. Skibidi Toilet is a part of history.
A 10-year-old
Shoutouts
https://www.youtube.com/watch?v=M6QOrgMeuMI
Shout outs to Amy and Matt who had us over for a barbecueShout outs to Anthony was in town and came over
It Sucks To Breathe Through A Straw
My sleep apnea CPAP device has been having low pressure, making it hard to breathe through. Unsurprisingly, it triggers anxiety. It's like breathing through a long straw. To counteract the feeling of not being able to breathe, I adjusted the pressure on my sleep apnea device and slept longer.
I'm trying to get an appointment with the sleep doctor. I've slept ok last the last four or five nights.
Sisyphean Labor For Meager Reward
Community radio DJ holding a torch aloft by the side of the inky black ocean
Submitting poetry is comforting because the process is its own reward. It can just go on endlessly, a bit like the radio.
Talking to my friends, many have some source of anxiety, from stress, responsibility, waking up in the middle of the night, no afternoon coffee, drinking beer and sleeping badly. I guess what I'm going through is a fairly common experience.
I used Curb Free With Cory Lee! as a guide to book a wheelchair-accessible Alaska Cruise for 2025. This summer, we're going to Montana for family vacation.
The new coffee machine is making better espresso. I haven't fully figured out how to steam milk and integrate that into my coffee making, so I end up with a cappuccino that is exactly the way I want it.
I'm taking the kids to school in the mornings again.
Uncontrolled anxious thought chains kept me from bed. I didn't get to sleep until after 1:00 a.m.
Did It By Myself
Today I did something I have been afraid of for months- since we got the wheelchair lift- I l loaded and unloaded my chair onto my van by myself.In November, when I got the chair lift, I assumed that I couldn't do it because there were straps and restraints to tie down the chair. A little complicated for me last year, but now, I've figured out some ways that I can use it on my own and there's no other way to figure that out but just doing it
Thanks to my wife who supported me and who loaded my chair in and out of my van for years and now I figured out how I can do it on my own. I've needed a victory like this that I could point to and say, "I am improving."
It takes a couple minutes to put my wheelchair on the car, but not very long at all. It makes me feel independent and that is very good.
In related news, I drove and got my pants hemmed at John The Fashion Tailor in Oakland. I've been getting things altered there for 20 years. Hemming six inches off of my pants changed the proportion of my clothes.
Skibidi Toilet is a part of historyI slept pretty well last night
Skibidi Toilet Selfie
00:00:01 - Intro
00:01:57 - Last episode recap
00:03:54 - CPAP machine malfunction
00:06:09 - Submitting poetry
00:06:27 - Community radio DJ
00:07:23 - Many people have anxiety
00:08:27 - Wheelchair accessible vacation planning
00:10:19 - Curb Free With Cory Lee
00:11:52 - Missoula, Montana vacation
00:13:28 - New coffee machine
00:14:38 - Taking my kids to school
00:15:01 - Uncontrolled anxious thought chains
00:15:40 - Wheelchair lift breakthrough
00:18:14 - John the Fashion Tailor
00:19:58 - Skibidi Toilet is a part of history -
War On Sleep Anxiety
Compulsive behavior sequences are keeping me up at night, precluding a good night's sleep
I'm driven from bed, get dressed, go outside to calm down, and eventually get back in bed. Out-of-control thoughts about the various trauma I'm going through overwhelm me, and soon I'm driven from bed again.
Searched up 'strategy to stop repetitive behavior compulsive' at 130am:
Sleep anxiety is a feeling of stress or fear about going to sleep. Anxiety is the most common mental health disorder in the U.S. Research suggests that most people with mental health disorders like anxiety also have some form of sleep disruption. Treatments may include therapy, better sleep hygiene or medication.
"Sleep Anxiety," Cleveland Clinic
Drop-off is the new normal
I took the kids to school again. We listened to KCSM, the Bay Area's Jazz Station, on the short drove to school. my daughter said it reminded her of Grandma's house, where indeed there is always jazz on the stereo. I told her about how I grew up listening to jazz on the radio.
Good Things Are Happening
My walking is definitely improving. Soon, I hope I can go to KFJC on my own. I'm working up to it. First, I got to get a good night's sleep.
I'm falling in love with the new cat.
Subscription Package
We subscribed to The 2025 season of @calperformances. We're going to see @therealmambazo @SamaraJoy99 @AntonioDrumsX @ZakirHtabla. I'm very excited.
3D Opera Glasses
Back in the day I saw Phillip Glass perform "Monsters Of Grace," directed by Robert Wilson in Zellerbach Hall, and it was very spectacular.
Originally, Wilson intended the fantastical scenarios he envisioned to actually be staged. When he realized the enormous costs and effort that would be involved in performing such a project (which included such tableaux as a gigantic hand pulling a sword from the ocean and a helicopter flying over the Great Wall of China), Wilson and producer Jed Wheeler began looking into creating the entire visual end of the production with 3D computer graphics. ...
One major drawback that seems to have been the project's main flaw was the length of time required for creating and rendering the animation. It took twenty animators almost a full year to complete the footage based on Wilson's original intent. Wilson, who has been described as liking to maintain great control over his projects and to change details at the last minute, gradually grew frustrated upon seeing how much time was required to change the animations, and ended up distancing himself from the animators. This led to a final product that, from his standpoint, was unpolished. In an interview with the New York Times, he remarked, "This is like being a dog with a litter of puppies that went away six weeks later. . . . Here I was working with people who didn't know my work, in a medium I didn't know."
"Monsters Of Grace" Wikipedia page
We won't be seeing that again.
We subscribed right after they announced the schedule, which reserves us a place in line to get ADA seats.
Back on the exercise bike
New Coffee Rig
A new espresso machine is coming - the Lelit Victoria. It's an updated version of the 30-year old machine I use currently.
Back And Forth
The new therapist is doing eye movement therapy, called EMDR.
Eye movement desensitization and reprocessing therapy, commonly known as EMDR, is a mental health therapy method. EMDR treats mental health conditions that happen because of memories from traumatic events in your past. It’s best known for its role in treating post-traumatic stress disorder (PTSD), but its use is expanding to include treatment of many other conditions.
"EMDR," Cleveland Clinic
Winning
3:33
I'm winning the war on anxiety, because I won't have it any other way. Sleep anxiety is making things difficult.
I drove to Emeryville and get my haircut from Anjela at New Florence Salon.
A few days ago, -
Slogging Through
Getting through anxiety one day at a time, one step at a time, putting myself out there. Slogging through.
In the news
Paris Promised the Olympics Would Be Accessible. The Clock Is Ticking.
Article: Paris Promised The Olympics Would Be Accessible
The city, which put inclusivity at the center of its bid, has improved access for people with disabilities, but with the opening ceremony about 12 weeks away, obstacles remain.
Slogging through
Processing what's happening
One of the hardest things about Multiple sclerosis is wrapping your head around it. being cool with the things that are happening to you in the processes that you are part of accepting them is very difficult. maybe it doesn't have to be. in Buddhism they say that all life is suffering, but some of it is unnecessary.
Maybe it's important to accept myself and what's happening, that it is okay that you are okay it has been okay it is okay and it will continue to be okay.
I am thinking about that because I am going to start talk therapy again
I'm getting some relief from anxiety. taking it easy
Last night I made rice and beans and we had it with eggs and salad
Bailey, a female wrestler on smackdown from San Jose CA
It rained on free comic book day
anxious feelings are difficult to control
back pain creating a nerve tingle in my groin and knee
difficulty sleeping
I play an impartial judge in mayhem special. Jersey girl and max levels
I drove to the coffee shop and didn't give up until I got a cappuccino - twice
drove to Oakland and pumped my own gas
Mayhem
Max level picked me up at my house and drove me to kfjc where we broadcast the snap crackle pop special with Jersey Girl. shout outs to max level Jersey Girl circumference, Robert Emmett and the sandman
everybody played a role
radio helped anxiety - in the moment
New Therapist
New talk therapist began. we spoke about the bad anxiety i was feeling, the anxious thoughts and the need to tell the doctor that the medication was not relieving me. my therapist has worked with disabled people before, and some of them could not communicate, so they had a hard time advocating for themselves.
insomnia. anxiety. panic when I liey down. the numbness inside my head becomes my focus, and I obsess over it. eventually I calm myself enough to lie down, then the cycle begins anew
I drove my family to a baby shower in Dublin for one of my wife's coworkers
Selfie
00:00:00 - intro
00:00:47 - paris promised the Olympics would be accessible
00:03:59 - slogging through anxiety
00:07:41 - it is ok, it has been ok, it will be ok
00:09:06 - relief
00:09:54 - cracking crabs at market hall
00:12:53 - wrapping your head around MS
00:14:12 - new talk therapist
00:15:24 - back down the track
00:15:48 - boys time
00:16:13 - cooking to find noormalcy
00:17:06 - Bayley, wrestler from san jose
00:17:48 - rainy free comic book day
00:18:08 - anxiety thoughts
00:19:42 - snap crackle pop kfjc mmayhem special
00:20:49 - getting around on my own
00:21:48 - taking the kids to school
00:22:58 - shout outs
00:23:28 - broadcasting in the moment
00:24:21 - advocating at the doctor\'s office
00:25:20 - changes in sensation
00:26:11 - baby shower
00:27:55 - cirque du soleil
00:29:28 - outro -
Anxiety Medication Strategy Session
In "Anxiety Medication Strategy Session," changing opinions on music, bouts of anxiety, recent publication in Identity Theory and Disturb the Universe, family life changes, increased mobility, and resumption of some duties.
Last Old Guy Or First New Guy?
Recently, I read a tweet by flea, and I was forced to reconsider:
https://twitter.com/flea333/status/1774601328502898936
https://youtu.be/QEgalcH_-b4?si=q7ZD6rdC4ZhfnwbY&t=1762
Pat Matheny on German jazz critics
Pat Matheny was a jazz guitarist that my stepfather really admired. For that reason, in my youth I stayed away from it. In general, I mind it less now that I am older, but I generally don't seek it out.
Sometimes, a random tweet by flea will turn decades of tradition on its head, and I'll be forced to reconsider. In an interview with Rick Beato, Pat Metheny had this to say about musical invention:
German jazz critics are great. They'll come right out and say the most direct thing. I had a guy say to me-- you know, not that long ago, maybe 10 years ago-- "Are you the last old guy, or are you the first new guy?" and the thing is, I bet you know what he means too, right? Yeah, of course.. I mean, for me, both.
Well, I don't know, I mean, you know, it's hard to be objective about your own thing, but what I will say is that, for me, there was no option other than trying to invent stuff, yeah.
Anxious feelings
I had a bout of anxious feelings and panic. I reached out to my care team and spoke over video and in-person at the office with my doctor the next day. We think it could be related to switching off of nerve-pain medication post-surgery.
Marinated Spicy Chicken Thighs Recipe
Over at Hoppin Hot Sauce, there's a new recipe for Marinated Spicy Chicken Thighs marinated in yogurt, salt, and Hoppin Hot Sauce.
"Vern" published in Identity Theory
I’m happy to announce the publication of “Vern” in Identity Theory, selected by Micro Editor Vic Nogay. Many thanks to the publisher Matt Borondy.
“Vern” is a 50-word story about the workplace injury sustained by my great grandfather, T. Vernon Smithson, at the cotton gin in Mount Juliet, Tennessee.
Identity Theory is an online magazine of literature and culture publishing interviews, prose, poetry, art, commentary, and other inventive explorations of humanity since 2000.
"Vern" published
https://twitter.com/IdentityTheory/status/1783167798942023891
Reading "Vern" for Identity Theory
"Hot Day" published in Disturb The Universe
I’m happy to announce the publication of my eco-disaster poem, “Hot Day” in Disturb The Universe Magazine, April 23, 2024. The poem takes place in a decomposing world in thrall to “inevitable circumstances/ That can’t be avoided.”
According to their website, “Disturb the Universe aims to share writing on the edge from writers strongly inhabiting their voice.” Many thanks to Editor in Chief Skaja Evens.
"Hot Day" published
Non-stop publication action
Is disguising the inevitable sinking feeling but it has to be in there, somewhere.
Domestic Emptiness
For the first time since 2020, my wife is back to the office four days a week. It's probably a big change for her. She comes home bursting with stories of her new gig. She seems very stimulated, and I think that's a good thing. Our home is empty during the day for the first time since we moved from San Jose.
More walking
I'm in my wheelchair less and less, and walking more. This week I went to the library on my own, walking in and out from the parking lot, trying to build stamina. I went to the doctor without the chair. I use it when we go to the market, any time when I'll have to do extended walking or to carry things.
Resuming Some Duties
Last week, I picked up the kids from school and picked up the vegetable box - something that I haven't done more than once or twice in the past year.
I made an appointment to get a hair cut in -
Publication Barbecue
Featuring updates on Hoppin Hot Sauce inventory, newly published writing, recuperation from surgery, the year's first barbecue, and a new family pet.
Sandman Knows Kale
Shout outs to the Sandman, who wrote in about kale and he knows more about kale than I ever will. He works with kale as a kaleologist.
Extra Hot Shortage
Buy Extra Hot Hoppin Hot Sauce from Amazon as we will be out of stock on Extra Hot in the near term, and once Amazon runs out, we're out.
Publication
Instant Noodles published my 50-word story "CYBERTRUCK DENTAL, S. DE R.L."
The link to the stuff that is published, along with what's upcoming is on the Publications page of my author site jwh.whatsthematterwithme.org
The sinking feeling you have after publication is the same one you have after you have an art opening. Everything returns to normal. Banal, mundane, normal.
But in fact, I did accomplish something. What I set out to do: become a published writer.
The thing rolls on, even: a second 50-word story will be published in a different publication next week. I recorded myself reading it in a video at the request of the editor.
Surgery Update
Looking at the calendar, it's been about 4 weeks since I had surgery. I've reduced my medication down to the pointt where I'm almost completely titrated off of the pain medications I've been taking for months.
New New Cat
We've got a new cat at the house. It's a two-month-old kitten that's part-lynx. It's in quarantine for the next 10 days, maybe more.
Barbecue
I lit the barbecue for the first time this year. Now that my meds are reduced, I feel like not as scary to grill. For the first go-around, I made skirt steak and eggplantLast night, I grilled a pork tenderloin with whole grain mustard, brown sugar and Shaoxing wine. We ate it with steamed new potatoes and boiled carrots.
Hollywood
We ordered a new juniper tree, a 'Hollywood Juniper' juniperus chinensis var. kaizuka.
Remodeling
After launching my writer's website, I'm remaking the whatsthematterwithme.org website with the same theme. If it all goes well, I could see myself redoing HoppinHotSauce.com the same way.
Gary in the press
Installation view of Gary Cannone’s Manet/Degas at Compound Yellow, Oak Park, Illinois (photo Jonas Müller-Ahlheim)
Past WTMWM? interview subject Gary Cannone got a great write-up by Lori Waxman in hyperallergic about his solo show at Compound Yellow in Oak Park, IL. Check out the Gary Cannone Interview Special here.
Gaining equilibrium
For the first time in months, I got up from the couch by myself. A couple of times
Selfie
Publication Barbecue selfie
00:00:00 - Intro
00:01:03 - Hoppin Hot Sauce Jingle
00:01:20 - Shout outs
00:02:01 - Instant Noodles Publishes \"CYBERTRUCK DENTAL, S. DE R.L.\"
00:02:34 - The feeling you have after publication is the same one you have after you have an art opening
00:03:17 - another story will publish next week
00:03:35 - Writing site at jwh.whatsthematterwithme.org
00:04:03 - RF Rhizotomy recovery update
00:06:05 - Tapering off habit-forming medications
00:07:08 - We have a new cat
00:09:03 - First barbecue this year
00:10:15 - The Way I Grill Charred Eggplant
00:12:42 - New Juniper Tree
00:13:43 - Remaking whatsthematterwithme.org
00:13:55 - gary cannone hyperallergic writeup by lri waxman
00:14:35 - getting up by myself
00:16:11 - Outro -
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.