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.

Iron Curtain

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Welcome to “Iron Curtain,” a trip behind the enemy lines of the mind, contrasting the styles of my current dentist, The Cat, with my last dentist, The Iron Curtain. Peel back the layers of flayed gum tissue and see!

To give you a hand, I asked artificial intelligence to find the funniest part:

It’s challenging to pinpoint a single “funniest” part, as humor is often subjective and can vary based on individual preferences. However, there are several moments that include lighthearted anecdotes, witty observations, and amusing descriptions. For instance, John’s description of his neighbor, the retired police officer, and his interactions with people caught driving around is quite humorous. Additionally, his playful musings about the “Iron Curtain” dentist and the Ukrainian war, as well as his interactions with his dentist and the solid wheels for his wheelchair, also carry a humorous tone. Humor is often found in the unexpected and quirky details of everyday life that John narrates in his podcast.

Sounds completely amazing, let’s dive in!

Caught in the act

Retired cop caught some people driving around. He subtly got their name and address and he’s still taking their statement

Shoe Fail

I bought Billy shoes and they were too small – got to exchange

New Kind Of Animal

Got my teeth cleaned where they do it like cats instead of like the iron curtain. I wonder if she ever wanted to quit being a dentist in the states and move back to Ukraine and do her iron curtain work on Russian soldiers

Live Ukrainian Death Match

Accidentally head-butted the wall in the garage – abrasion. Fell on my stomach.

Sinkrippers

We got the pedestal sink in the bathroom anchored to the wall with a a piece of wood and my friend complimented me that my house looked nice

My kingdom for a tube

Popped my tire, and instead of getting a replacement, I got a new wheelset. I got solid wheels for my wheelchair at the medical supply store, where they said nobody uses tubes anymore.

A Rare Success

Last night for dinner grilled a 2# Rib steak, onions, cabernet – it came out as even a rare that I have ever cooked.

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Security Shirt

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Video podcasting

In “Security Shirt,” I’m experimenting with creating a video version of this podcast. With video, it’s proof. I’m going to focus on trying to make movies, then seeing if I can integrate them into the podcast

Shout outs

  • Shout outs to Wylie
  • Shout outs to the Sandman who wrote Jack Tar & I about a live Buddy Guy concert on TV yesterday

Reframing

  • Thinking back to “Hit My Head On The Bed,” maybe I should get a bed frame with posts or other hardware on the bottom so I can hang on to that – because there isn’t anything to grab on to at the lower end of the bed.

Sao Ichikawa wins Akutagawa Prize

Photo/Illutration
Sao Ichikawa, the winner of the Akutagawa Prize, speaks at a news conference in Tokyo on July 19. (Takuya Isayama)

Security Shirt Movie

  • Security Shirt story – “a man is blocking the stairwell”

AFO drama

  • My AFO brace has come unglued again
  • I’m falling a lot, getting bruises, and taking lots of ibuprofen

Thor Raining Down Lightning

  • Trigeminal neuralgia was like lightning coming through the clouds. The clouds came from the carbamazepam and gabapentin I was on at the time. But then the lightning of trigeminal neuralgia in electrical nerve disease was like being in an area where there are lightning storms. The lightning is pretty unpredictable and there are mostly clouds, but once in a while the lightning strikes or there can be a lightning storm that breaks out and there are many, many electrical strikes. It causes a lot of anxiety because of how unpredictable it is. And having gone through many many of those lightning storms, I am kind of traumatized. I am on the same medication today and under more or less the same clouds. But there is no lightning when there is any feeling at all it is very muted. But like I said I’m traumatized. I’m anxious and I’m fearful. I have to recognize that

Easier dressing

  • Relaxed fit clothes fit my AFO easier but they are going top be a change for my wardrobe

From the Corrections Desk

  • Correction from my wife. We didn’t use carvana that we use CarMax. The same one we use the last time

Smoke Signals

  • Burping after eating Taco Bell vegetables tastes like cigarettes
  • I was about to tell this lady at National Mobility and Seating right when the guy told me I was at the wrong place and he was behind the window at first so I didn’t see him
  • My wife was relieved

On The Beat

  • I saw Kerry in the park at 8:30 a.m. trying to do what he can for as long as he can

Frank Fat’s

Revenge Against All Odds

  • Crippled Masters. One with no legs, the other no arms.
  • Disabled self-representation in a martial arts film.
  • An avant garde film.
  • Ended with no falling action

This Week’s Selfie

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With my wheelchair

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Trying to make this work

Video Podcast Experiment

I guess

I’m just trying to make this work yo! I made a video podcast of the What’s The Matter With Me? Podcast. This isn’t a full episode of my podcast, rather a test to see how it works. I have wanted to do this for a while and I just figured it out here and now. I think I’ll keep at this, so stay tuned.

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Hit My Head On The Bed

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Welcome to “Hit My Head On The Bed”, an episode unlike any other about unwelcome interactions with a solid bedframe, children’s birthdays, and walking the beat. PLUS a new theme song candidate faster than any others.

Frame Very Solid

  • I fell and hit my head on the wood bedframe

Child’s Birthday

  • It’s my sons birthday tomorrow
  • On the weekend, he is going with a few friends to see the new Mission Impossible

Movie Theater Bars, Part One

  • I bet they make whiskey sours with Jim Beam White Label at the bar

Just In Time

  • Hit the corner on my current phone and then it starts transcribing what is said and it does a pretty good job
  • I am figuring out the accessibility controls on my phone just as I am about to change to a new phone
  • I am an environmentalist so i throw away my trash
  • Technology has too many layers of microphones
  • By the time I figure out how it works, I need a new phone

Bike shop

  • we went to the bike store in the neighborhood and got my son a bike
  • we live next to the ride around the lake
  • the shop makes custom road bikes that are too nice for a ten year old

Lost Focus

  • Getting ready, I didn’t stay focused – the kids were fighting – and I didn’t stick the landing and fell getting ready
  • I hit my head on the wooden bed frame
  • I need to get help when I’m trying to get out of the house, but maybe it’s unrealistic to expect it

Walking The Beat

  • My neighbor is a retired police officer
  • He walks a lot and has a a loud voice
  • According to the bike mechanic, we live in the “forgotten zone”
  • He walks the beat all the time and he knows everything that’s happening

Down At The Heel

  • My shoes are trashed
  • I’m looking at billyfootwear.com which is made for people who wear AFO braces
  • I need help figuring out the sizing because the AFO affects what size I am
  • My current shoes are ugly and decrepit
  • The soles are cracked and the uppers have a condition resembling alopecia

Wheelchairiots Of Fire

  • My phone misheard my wheel chair as a wheelchariot and I thought that was pretty rich
  • Good thing I’m not having to fight for my life in ancient Rome

Opening Time

  • what time do they start serving whiskey sours at the movie theater bar

Sun Jam

  • NEW Theme Song Candidate “Sun Jam” maybe the fastest theme song candidate ever

This Week’s Selfie

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Hit My Head On The Bed Selfie

Remember, the selfie is only available to those who subscribe

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New Van

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Welcome to “New Van” on the What’s The Matter With Me? Podcast

In this episode, I get a new van that accommodates a chair lift, host a friend from out of town, and start to plan the heavy metal concert at my burial.

News Smash

Shout outs

Custom Hoppin Hot Sauce vans
Sand Man’s idea
  • Shout out to Rocky and the Sand Man

Burial Music

Terrible Cemetery cover
Terrible Cemetery
  • A terrible cemetery would have no benches
  • Metal changes tempo
  • You can only slam dance to it
  • The dancing people stay away
  • You can’t dance to it
  • Nami replied, “and maybe that’s the point.” A metal thing to say

No Police Escort

  • little league baseball season was a disaster
  • The police escort didn’t show up and the parade was canceled
  • In the middle the A’s decided to move to Vegas

Visitor

  • Buddy came from out of town

New van

New van
New car smell
  • They picked up the old van for donation
  • We purchased a 2020 Toyota Sienna.
  • Its coming on Saturday

Pick Me Up

AL6000
  • Finally, we are going to get a wheelchair lift in the trunk.
  • I am trying not to get too excited

On The Contrary

Clean - Crisp - Clear
  • Admittedly, I can be a contrarian, so when KFJC got a little too carried away playing an all-vinyl marathon that extended to almost a week, I proposed an all compact-disc marathon, called The Plastication.

This week’s selfie:

new van selfiae
New Van selfie

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Chew On That

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Welcome to “Chew On That”, an episode about new music, barbecues, and the cultural differences between cafes and diners

Best Sauce

Hoppin Hot Sauce Original Flavor

Check it out:
Hoppin Hot Sauce is on Amazon

News flash:
It’s the best sauce In the world

SHOP

Big Up Listener

  • Shoutouts to Rocky
  • Shout outs to the people who listen to every episode

Boom Roasted

  • We needed to order another Filter for the ice Maker and bang i did it

Trip to the Cathedral

Tom's restaurant
Right around the corner
  • This is a podcast about nothing because i’m from the Seinfeld era

Ritual Hazing Absent Father

  • I had Dad drink cucumber skin juice
  • He grimaced. and we laughed and pointed at him

First Detroit Based Art Gallery And Studio For Disabled Artists

Progressive Art Studio Collective (PASC), a program of Services to Enhance Potential,  is seeking funding to complete the build out of our future Detroit Gallery and Studio in LANTERN. If PASC raises $50,000 by August 5, we will win a matching grant through MEDC’s Public Spaces Community Places initiative.

SUPPORT

Sausages On Display

  • We hosted BBQs on July 4th & 5th
  • I’m an extrovert and my wife is an introvert
  • For the 4th we had sausages and ssteak
  • On the fifth, we ate hamburgers

MUSIC RUNDOWN

Sonny Rollins & Leonard Cohen
Ghast “O Akhea Rheon”

Kids are into this

Purchased the catalogue

$0.15/release

This Week’s Selfie

chew on that selfie
Chew on that selfie

GET THE SELFIE

Every time we release an episode

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Air Time

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Welcome to “Air Time” on the What’s The Matter With Me? Podcast

Across the street they had that place with Coffee & Tea, remember that? It was coffee with a black tea bag in it.

Best Sauce In The World

Stay For The Selfies

  • Surf it on over to Subscribe page and never miss an episode
  • Makes No Sense: Is the plural of selfie also selfie?

Air Time

  • KFJC radio is an outlet for neurodiverse people and people with speaking differences and it has been that way for a long time
  • Shout outs to the people who download every episode
  • Watching the Special Olympics Opening Ceremony on ESPN
  • Disabled people can be hard to organize
  • I’m glad they got airtime

New glasses

air time glasses
  • Went to Costco and got new prescription & frames
  • I made Chili with chile de arbol in it

Good For Ex-New Yorkers

Paralyze my muscles

  • I went To the doctor to get botox
  • Botox is cosmetic but also relieves tension, llike spasticity caused by MS

I was embarrassed by my parents too

  • John was embarrassed to have me drop him at camp in my wheelchair

Salad is healthy

  • The internet thinks franks and beans are healthy

Pox on our house

  • Koko has Covid

Sellout

  • Rollins plays with the Rolling Stones, uncredited, on Tattoo You

Don’t know how

  • I need to sell my car

Early fall

This week’s selfie

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Hanging in there

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You’re Just Jealous

Welcome to “You’re Just Jealous” on the What’s The Matter With Me? Podcast

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My glasses, my walking stick, my car, my phone: everything is breaking down. My buddy’s offhand comment takes me back to a time when my defense was, “You’re just jealous!”

AI Is For The Birds

  • Shout out to Ashika who lol’d with me at how lame AI is, thanks for tuning in

Sandman and/or Uncle Dennis

  • Shout outs to the Sandman Uncle Dennis, no not THAT Uncle Dennis
  • also , why not, shout outs to THAT Uncle Dennis
  • but also to the Sandman Uncle Dennis
  • these are two different people
  • Shout outs to all the cult members

There’s So Much Going Wrong

  • I’m relying heavily on my family to function
  • i got my glasses and my car back and have ordered a new walking stick
  • My cane got adjusted too high. I think I did it when I was messing around with it- that made it very hard to walk. Then, I made it too low
  • My old brace is giving me fits and I have to go back to the cobbler
  • I went to get a new brace and it was a fiasco
  • I have so much going wrong that it is hard to look past it

The way he says it

  • I ate a Wingstop chicken sandwich mango habanero and lemon pepper fries and it sucked

Unknown Emotional Toll

  • I fell 3 times on Monday. One time I asked John to help me sit up

Reading the paper

zb10 tablet
  • I bought a tablet to read the newspaper for $50 and it worked out

Potty Mouth Actor

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On the schoolyard

  • A buddy’s offhand comment about only children took me back in time
  • “You’re just jealous” used to be my only defense
  • “Who listens to you at that time of night?” – sorry Aunt Linda

This Week’s Selfie

you're just jealous selfie

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Disability and Obscenity

Welcome to “Disability and Obscenity” on the What’s The Matter With Me? Podcast

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Is disability obscene? Coverage of Michael J. Fox and Sen. Dianne Feinstein has me examining implicit connections between disability and obscenity.

People with advanced degrees can stomach the summary

  • Shout outs to Doctor Kathryn- she appreciates the summaries because they’re quick to read
  • Because she’s a doctor and they only get 15 minutes to do everything

Hah!

  • Finding humor in adversity makes it easier

Not Sick Anymore

  • Temperature report

24 Hour Meth Rave

  • Sonny Rollins met up with Sartre on his 1966 European tour
  • When he came back to New York City he could often be found at the jazz loft on the fifth floor at 89 East Broadway

The Emperor And The Caveman

  • I grilled a boneless ribeye, it came out perfect and it was a relief to eat it without the kids, who eat in opposing styles that are less than ideal in different ways

Navigating disability in public

Roosevelt remained paralyzed from the waist down and relied on a wheelchair and leg braces for mobility, which he took efforts to conceal in public.

From the Wikipedia entry “Paralytic illness of Franklin D. Roosevelt”

This Week’s Selfie

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disability and obscenity selfie

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Five Nights of Sweating

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Welcome to “Five Nights of Sweating” on the What’s The Matter With Me? Podcast

A fever that doesn’t seem to want to go away; new music around the house; some terrible food. Maybe we can make the time pass quicker if we go to a grind core festival.

Is not wanted

  • I’ve got a fever that kept coming back

Word

  • What’s The Matter With Me? Podcast is sponsored by Hoppin Hot Sauce— it’s the best sauce in the world! hoppin hot sauce is on amazon so anyone can eat it with hash browns and and English muffin-egg sandwiches with or without cheese but definitely with Hoppin Hot Sauce

Feeling feverish

  • For the first 3 nights it was up around 102-103 F
  • In addition to Tylenol, I started taking Advil as a fever reducer, then I woke up covered in sweat with a normal temperature
  • Then the next day it would began again
  • I had an epiphany to drink Gatorade

Catching up with Sonny

  • Sonny Rollins has got a mohawk, where i’m at in Saxophone Colossus
  • At his shows, he came out with the cowboy hat, then he would take that off and had the mohawk underneath

Burnin’ Up

  • I sweat through the sheets for the 4th night in a row
  • Disgusting: I smelled like a case of unwashed grapefruit with a sour whiff of spoilage or maybe more than that
  • As if someone left me in the back hall, not in the fridge. by the dumpster near some unnamed liquid.
  • I need a clean up

New Music

On the fifth night

  • I sweat through the bed on the fifth night and woke up drenched yet again

Grim

  • In frustration at not being able to cook for myself, I took the reins at dinner
  • I ended up making fried gnocchi with spinach, Garlic, tomato, cream, a can of sardines
  • It could have used acid like lemon juice or vinegar to offset the tinned fish. There was a lot of cream though
  • It was terrible. the kids wouldn’t eat it.
  • I thought to myself, “It is making your nails stronger and increasing your hair’s tensile ability”

Made it through

  • On the sixth night the fever evaporated and I woke up mostly dry

Grind core for the whole family

  • Gilman is hosting the Fast, Wierd and Freaky Festival this weekend
  • It’s all ages
  • I might still be a little too tired plus John John is maybe not ready
  • Maybe he’s not even ready to hear the band lineup read aloud

Dad Butt Dials Me

  • Dad is butt dialing me again
  • We watched John Voight & Jane Fonda in Coming Home

This Week’s Selfie

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After Five Nights Of Sweating

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