My name is John,

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.

Portrait

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.

Turkey Order

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The turkey order’s in, and I ordered two. We’re going to use the rotisserie. I had pretty eyes at the Halloween party

Welcome to “Turkey Order” on the What’s The Matter With Me? Podcast

In this episode, I put in the turkey order at the butcher shop. This year, we’re having Thanksgiving at the house again, and we’re planning to cook the turkey on the rotisserie. I ordered two smaller birds instead of one big one, and I’m hoping it’ll be more manageable that way. Also in this episode, we went to a Halloween party where my wife made me up like a beautiful woman, but not the one I was expecting. Meanwhile, Christina Applegate was diagnosed with MS, and we read about it in the newspaper.

  • I went to a Halloween costume party
  • collard greens & ham hocks email went out
  • subscribe to the What’s The Matter With Me? Podcast and you’ll never miss a selfie and that’s like having an nft, collect them and store them in your digital asset vault
  • What’s The Matter With Me? Podcast is full of good ideas
  • shout outs to rocky,
  • she said listening to the Podcast in the car is the best because that’s when you notice the sick bassline in the theme song
  • Bow down and pay homage to Rocky the Librapian
  • Shout outs to Jerry. he met his wife at a rave. I met him once before at Cato’s. He liked my shoes.
  • I went to a Halloween costume party
  • I had kind of no costume but I had my wife do my make up and I had beautiful eyes
  • Christina Applegate has MS
  • Don’t Tell Mom, The Babysitter’s Dead (1991)
The dishes are done man
  • I fell and bruised up my kneecap
  • Last night we had raviolis, tomato sauce, broccoli, and salad
  • we’re going tro have my cousin for dinner on Friday, and we’ll test the rotisserie then

This Week’s Selfie:

selfie
Go Sharks

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Disabled Americans Are Going Back To Work

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Remote work and labor shortages have increased the number of disabled workers & experts say it may be permanent.

Welcome to “Disabled Americans Are Going Back To Work” on the What’s The Matter With Me? Podcast

There are plenty of sound effects in this week’s episode, like a xylophone and a noise like, “Fweet!” that we hear while reading through “For Disabled Workers, a Tight Labor Market Opens New Doors” by Ben Casselman in the New York Times to find that changes ushered in by working remotely during the pandemic might have positive effects for the disabled workforce, and these changes could be long-lasting. Also this week, I continue to build stamina and regain my independence, taking some trips with the kids all by myself for the first time since July. *sound effect*

  • Disabled Americans are going back to work
  • ..and other visits to the library
  • Shout outs to Rocky
  • Search up=look up + search engine
  • I took the kids to the library by myself on a Saturday afternoon
  • To give my wife some alone time- we were gone for a couple of hours
  • She slept
  • My daughter is reading books- she read books at the library by herself
  • Monday they were off school- we went to Big 5, EPL, and back to the library
  • Tuesday I went to Stanford to meet with the surgeon who performed the rhizotomy for my final post op appointment
  • Wednesday I drove to Oakland & got my hair cut
  • Last night I cooked Collards and ham hock, miso ling cod, broccoli and rice
  • I’m back in the kitchen

I Contain Multitudes

Song of Myself, 51
Walt Whitman - 1819-1892

The past and present wilt—I have fill'd them, emptied them.
And proceed to fill my next fold of the future.

Listener up there! what have you to confide to me?
Look in my face while I snuff the sidle of evening,
(Talk honestly, no one else hears you, and I stay only a minute longer.)

Do I contradict myself?
Very well then I contradict myself,
(I am large, I contain multitudes.)

I concentrate toward them that are nigh, I wait on the door-slab.

Who has done his day's work? who will soonest be through with his supper?
Who wishes to walk with me?

Will you speak before I am gone? will you prove already too late?
  • My son is being picked on at school- I have Rise on hold
  • I want him to find support in his own identity

Disabled Americans are going back to work

This Week’s Selfie

disabled americans selfie
Fweet!

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Doctors Admit They Don’t Want Patients With Disabilities

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Doctors admit hey don’t want patients with disabilities. Plus, one-page term papers, specialty jeans. and more.

Welcome to What’s The Matter With Me? Podcast, “Doctors Admit They Don’t Want Patients With Disabilities”

In this episode we read about visiting the doctor in a wheelchair, how it affects the doctor-patient relationship, and ideas for appropriate reforms.

  • Thank you for tuning in- I admire you!
  • Shout outs to Cobra Verde for being down with the WTMWM? Listener Convention
  • Going to call the vivarium to set up a wild animal demonstration for the Listener Appreciation Party.

Silk Sonic

  • Silk Sonic is pop R&B music with synchronized dance moves
  • J Kenji Lopez-Alt “The Wok” cookbook weighs in at 4.7 lbs

Half Letter Press

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Protest Grim Reapers

Doctors Admit They Don’t Want Patients With Disabilities

This week’s selfie:

Doctors Admit They Don't Want Patients With Disabilities selfie
Shirt: @newertopographics

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Midwestern Concepts

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At the first What’s The Matter With Me? Podcast Listener Appreciation Party, everyone gets their own booth

Welcome to What’s The Matter With Me? Podcast, “Midwestern Concepts”

Continuing my transition away from the protracted intense pain of Trigeminal Neuralgia that my successful rhizotomy has brought me. In this episode, I explore Midwestern Concepts such as the work of the artist Marc Fischer and holding a listener appreciation party/convention at a hotel ballroom in Chicago. I think the thing is, it’s centrally located, and I’ve never hung out there.

  • Sending huge geographical shout outs to listeners from 32 states in the last 28 days
  • Mega large shout outs to the people who donated to the school fundraiser. the fund rager *angry scream* Thank you for supporting the fundraiser, helping my kids do their part to help pay for unfunded programs at the school. I amalgamated them and created a genderless combination being. It’s unclear if that affected donations one way or another
  • email me via the contact form and tell me exactly what you are thinking and don’t leave anything out

Midwestern Concepts 1 & 2

  • Midwestern concepts #1: Marc Fischer / Public Collectors/ Half Letter Press’ new Protest Grim Reapers book
  • Midwestern concepts #2: What’s The Matter With Me? Podcast listener convention in chicago. *conference sounds* We rent a hotel ballroom. Everyone gets a booth. *ooh* I meet everyone. *aah* Guided meditations, *om* Accessible yoga, *sitar sounds* WTMWM? Live! *game show* door prizes- experimental trash punk bands *applause* cash- *ch-ching* gifts!
  • *orchestra tuning* A theory of the musically sublime at Stanford on friday
  • I pumped my own gas! Which is another one of these activities where you have to stand there the whole time. once I stopped taking anticonvulsants I was able to drive again
  • Lifeline crisis chat suicide prevention hotline (accepts texts): 1-800-273-8255

Very stable genius

  • I can do different things that seem to be helping me have core stability. I can step forward and land more naturally without in-toeing, flex my glutes and tighten my abs, and I can do it with increasing coordination. I can walk faster
  • I went to the kids team photoshoots and I walked up there by myself, I didn’t use my chair. I used my stick and sat on the bleachers while the kids were out on the field with the photographers
  • I walked to the bathroom which was over on the other side of the baseball field
  • The family piled in the car. family vacation time vroom
  • We went to the ranch and had paella and the kids roasted apples in the fire.
  • Koko had ash on her face
  • I want to go to the kfjc staff meeting, and there are 2 main obstacles- 1. long drive & 2. walk from car to the auditorium to the station and back.
  • I went to the nursery and the library and walked around those places- picked up the food lab J. Kenji Lopez-Alt book (a six and a half pound tome)
  • I’m going to walk at the market this weekend
  • carbamazepine side effects: confusion, balance

This Week’s Selfie

midwestern concepts selfie
Midwestern Concepts

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No More Painkillers

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NO MORE PAINKILLERS: After successful surgery, I’m off of painkillers for the first time in seven years.

Welcome to What’s The Matter With Me? Podcast, “No More Painkillers”

It’s a big day for me because I’m finally free of trigeminal neuralgia pain after successful rhizotomy surgery last month. It’s been seven years that I’ve been battling the disease and it feels like a major victory.

  • Shoutouts to Jersey Girl who told me about the Superfest Disability Film Festival happening in Berkeley & San Francisco later this month.
  • Claude Hopper wrote in to say he had a Chubb Rock record
  • Year Of The Tiger by Alice Wong
  • I sent Original Flavor to Amazon for restocking
  • Help support the kids’ school fundraiser by using this link to look through the catalog. for chocolates
  • ICYMI: I recommend the Gary Cannone Interview Special
  • I’m off pills and in withdrawal again – but its GOOD- I can go to my right better and stand on my own 2 feet’ easier
  • I am tolerating alcohol a little better so i can split a bottle of wine with dinner
    • Knock on wood- famous Last words- throwing triple hexes over my left shoulder
  • I am not adult enough to appear in a zoom meeting
  • Musk is back at it
  • A picture is worth a lot of these
  • “Last night for dinner” Journal: Cauliflower pasta
  • We’re going to the ranch

This Week’s Selfie

No More Painkillers selfie
It’s wild

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Gary Cannone Interview Special

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Artist Gary Cannone was diagnosed with multiple sclerosis in 2013

Welcome to the Gary Cannone Interview Special

Gary Cannone Interview Special live and direct, in the fleshh, 100% active and happening. Thank you for tuning in to the What’s The Matter With Me? Podcast, the Godcast, the Dad bodcast. 💪🏼🎅🏼🎅🏼

Gary Cannone is a Los Angeles-based artist who was diagnosed with multiple sclerosis in 2013. His work examines being an artist with multiple sclerosis through his absurdist sense of humor. Gary grew up as an Italian-American in Chicago, and he was the drummer in a punk band, so its about that, too.

Interview 9/21/22

I had the chance to interview him and we spoke about his work, advocacy, and the experience of an artist with MS. Check it out.

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Body Horror

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I made it through surgery- artist Gary Cannone preview- Helen Garner on fate- awkward dinner party conversation.

Welcome to What’s The Matter With Me? Podcast, “Body Horror”

Cool episode! I made it through a surgery with all the hallmarks of body horror: zombie anesthesia, facial electricity and a burning nerve. David Cronenberg will be perfect to direct the movie version. Plus, artist Gary Cannone interview preview- Helen Garner on impositions- an awkward dinner party conversation.

  • We are running out of Hoppin Hot Sauce on the zon, because I misread a figure on the inventory report.
Gary Cannone
  • Gary Cannone interview preview
  • I want to learn to write hilarious poetry in Japanese but apparently that’s not a sensible idea

Some very dear friends of mine had a three-­year-­old son who was profoundly autistic. They didn’t know what was wrong with him, and there was no name for it back then. He couldn’t really speak, and he didn’t know any words, but songs would reach him where other things wouldn’t, and he had a pure little voice when he sang. It interested me to see how his parents lived around this huge duty that had been imposed upon them—­to see how an act of fate like that would scour you of all your triviality. You’d have to find something in yourself that was much deeper than what most ­people would need to find.

Helen Garner
  • Helen Garner on autism, about trivialities in the Paris Review
  • Chronic illness erases people- thank you for listening to the What’s The Matter With Me? Podcast, an anti-erasure strategy
  • I had RF rhizotomy surgery and I finished it
  • It remindeed me of David Cronenberg/”body horror”
  • I went through it and now it’s over
Grape Ice Cubes
  • Now I can chew gum without pain
  • I chew grape ice cubes gum
Farro
  • I went to Berkeley Bowl, and did a lot of maneuvering to get farro in bulk. I knew it would be pretty wild.
  • I went to a dinner party and I felt uncomfortable for reasons I do not fully understand
  • Friends, food, conversation. I think I am not used to it.

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Pre-Op

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I am getting ready for surgery.

Welcome to the What’s The Matter With Me? Podcast Season 6, Episode 34, “Pre-op”

In this episode I’m getting ready to go into Stanford next week for surgery to help with trigeminal neuralgia. In the meantime, the kids are playing soccer, there’s heat dome, and the podcasts that kids are making.

  • Shout outs to mom who wrote in to make a correction that she was not actually a Registered nurse
  • But I tell people that she was so so I guess if you’re one of them watch out you’ve been fooled
  • geographical shout outs
  • My daughter Told me she doesn’t understand the rules of soccer.
  • It was been really hot in California because there was a heat dome,
  • You heard it here 1st
  • It’s been over 90ﾟ so I’ve skipped 3 soccer practices. It was over a 100 for 1 of them so we all skipped that 1.
  • I’m reminded of the episode where it was really hot in East San Jose and I discussed how it was like my thoughts bubble through my brain like mud
  • It’s a lot cooler in San Leandro and I am surviving this heat wave a lot easier because I live in a shady area That is Naturally cooler
  • I think that is a big value of this house that I stay away from Uhthoff’s effect
  • My thoughts don’t get stuck in my brain, instead they come out, case in point
sent in by Claude Hopper, Anti rock stacker image
  • In the morning my wife says Hi Like a deflating ziploc bag And sad trombone. And I’m like Hi whats up in a loud stern voice and she answers nothing! In a golem voice
  • Snapshot of our relationship
  • We laughed talking about it in the car after we dropped the kids off at school. how we come at it different
I ran a poll on Twitter and it got one reply and I wasn’t allowed to Vote
  • Seemed like It was 100 degrees all last week and it’s 73 today
  • I avoided Uhthoff’s effect. The Saturday games were on artificial turf. It was steamy out and still pretty sunny. I used my wheelchair. I wore a panama hat bc i had a family event
  • Saturday tripleheader- the kids played soccer games. koko was first in hayward, then john john in union city, then we went to san jose for a family BBQ
  • i had my preop- next week they’ll stab my face and fry my trigeminal nerve. i think they might keep me awake
  • if it is successful ill be able to come off all these pain meds. its called titrating where every week ill come off one more pill. itll take a few months to get off all of them but im cautiously optimistic
  • been getting into the Delaware Dan podcast. its very unorganized and im not sure if it has a topic or not./ i found it by searching google podcasts for the word cassette tape. you can really go dfown a rabbit hole. kids are makiung podcasts for themselves. also shoutouts to roast of your teenage self podcasts
  • these are podcasts by young people and its great. im anm old person who makes a podcasts about nothing or if you have to say its about anything, its aboiut having a horrible disease and crazy surgical procedures. its probably better and more accurate to say its about nothing
  • wrap up
  • kahlil gibran on children

This week’s selfie:

pre-op selfie
Radiant in yellow

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Wheelchair Tipped Over

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I went for a walk with Koko and I got more than I bargained for

Welcome to Season Six, Episode 33, “Wheelchair Tipped Over“

My wheelchair tipped over. I was on a walk with my daughter but it didn’t seem to scare her too much– we went to the swings and she had a good time.

  • My name is John Hoppin, don’t wear it out.
  • My wheelchair tipped over
deplatforming hits home

Death of a Statesman

  • My wife was like, “I don’t think I knew that Gorbachev had died. I was like, “We did that last week. That’s why you need to subscribe to What’s The Matter With Me? Podcast. So you don’t miss anything.”
  • Our listeners know about everything

Organic Hellfire

  • I had the worst trigeminal neuralgia pain – from my mouth up to my eye around my eye out to my ear. Spasming organic hellfire that sent me scrambling for more medication and sobbing under the covers.

#CIL50

  • #Cil50 is happening in October at the Berkeley Center For Independent Living.
  • I’m interested to get a booth to promote What’s The Matter With Me? and sell Hoppin hot Sauce to the disabled community.
  • I was at a friend’s house and they were grilling burgers and the podcast came up because we were talking about Cil50

Prediction?

  • Covfefe was covid

Security

It Happened Fast– My Chair Tipped Over

  • My wheelchair tipped over in the park
  • I was counting critters with my daughter Koko and wasn’t paying attention
  • The wheelchair bottomed out when it went off the edge of the concrete where there was a couple inches of gap between the dirt and the concrete
  • I was ejected from the chair and ate it to some degree- just a couple band-aids were needed in the end
  • Bystanders came running and helped me up and got me back in the chair
  • My daughter ran away when the people came running to help me, but she seemed to realize they were helping me. It didn’t seem to scare her too much– we went to the swings and she had a good time.

This week’s selfie:

selfie
It was 95 degrees out

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Disability Consciousness

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I said something ableist to someone I admire

Welcome to What’s The Matter With Me? Podcast Season 6 Episode 32, “Disability Consciousness”

In this episode, I reflect on the time I said something ableist to someone I admire, the drummer in deerhoof, what I might say (or not) now that I’ve spent some time working on my disability consciousness. I hope I might come up with something better. Also, Botox, falling and the first law of success, “Do You!”

Disability Consciousness

  • One time I ate with deerhoof and I said something ableist 
  • Because I didn’t yet have disability consciousness

How it is in Hayward

  • How it is in Hayward across from El Pollo Loco…
  • It’s weird when the Garden Center is a cinderblock building with no windows

RIP

  • rip gorbachev – gorby – commie pinko
  • rip chowhound

Extra

  • I had Botox
  • It’s a lot of injections

Shout Outs

  • shout outs to Kevin at Under the cowl of MS. He mentioned What’s The Matter With Me? Podcast and Hoppin Hot Sauce in one of his YouTube videos. Kevin reviews comic books
  • Williams Sonoma reordered Hoppin Hot Sauce for the western region
  • Mention Hoppin Hot Sauce and What’s The Matter With Me? Podcast in any and all settings
  • shout outs rocky and claude hopper for technical support- as always, if you see something say something

Do You

Falling

  • I have been falling a lot. One time I was flicking the switch in the bathroom and i ended up facing the wall with my back to the toilet

Deerhoof Show

  • I want to go see deerhoof in San Jose at the ritz in October, on october 22
  • Should I take my wheelchair?
  • Do you want to meet me there?
  • They are playing San Francisco the night b4 but I like going to things in San Jose

Black T Shirt

  • I had Botox
  • It’s quite a lot of injections
  • The nurse talks to you and the doctors say “123 poke”
  • In my trapezius- shoulder area, in my pectoral area, in my bicep and forearm
  • Of course I was wearing a white tee shirt not a black one
  • Note to self: wear a black t shirt for Botox
  • The injections get stronger over a week and then they last about 6 weeks before trailing off
  • I showed them my puppet video In the kitchen
Happy Birthday Nathan

I said something

  • One time I ate with deerhoof and i said something ableist
  • I didn’t have disability consciousness
    • one time I ate brunch with the member of deerhoof at a cafe called Brown on the lower East Side
    • I was dating a woman who knew them
    • The drummer appeared to have something like torrette’s syndrome
    • He said things and made sounds and physical motions that were Kind of like tourettes
    • I didn’t have a lot of disability consciousness back then
    • I think I asked him, “Hey man, what’s wrong with you?”
    • The guitar player was also there and he just giggled
    • It was awkward
    • I had lived with someone already who had Tourette’s syndrome so I recognized the signs but lacked disability consciousness to form my question properly
    • I think if I had it over again I would probably not ask anything
    • Or I could say what I observed, like something like, “I notice that you are moving a lot and making sounds.”
    • And maybe that would be enough to get whatever answer I felt that I needed
    • It’s kind of like asking someone that you observed many rolls of flesh and pendulous thighs and expecting them to tell you they’re fat.
    • I certainly wouldn’t ask him Hey man what’s wrong with you
    • I think if I had it over I wouldn’t ask him anything

This Week’s Selfie:

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