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.

oscars slap cover
oscars slap cover
Crowd work

After that Oscars slap, what to expect when you go into a comedy club as a disabled person. PLUS, bad food, hit my head and The Dawn Of Everything.

  • I always use the wrong finger on the security sign-in on my phone, like my fingerprints all match
  • Usually, I don’t want to download any apps
  • I had the worst Mexican food – we’ll read some bad reviews
  • Fell on my butt and hit my head in the parking lot, it was scary
  • Dawn of everything book club
  • Oscars slap discussion
Affinity Group Hang cover
Affinity Group Hang cover

We had a Sunday itinerary- birthday party, BBQ and baseball practice. I am accessing my affinity group.

Welcome to What’s The Matter With Me Podcast Season 6, Episode 11 “Affinity Group Hang,” There’s lots of things going on. I’m getting out there, even further out than I was already.

  • West Elm couch backordered until August
  • The liquor store is out of things too
  • Shout outs to Kevin in Wisconsin 
    • I’ve only got anecdotal info on a stem cell treatment for a friend of a friend who had pretty severe MS. He had the stem cell treatment and was feeling great for a while, but it’s been a few years and his condition has worsened.
    • I don’t usually do something unless my doctor recommends it, because there are so many different things that people recommend that it’s pretty hard to make heads or tails of it
  • Shout outs to Brook, and to Eric & Tracy who listened to the thing on a drive, they binged it
  • Reminder to think hard about putting pee stuff in the headline
  • Ran hella errands yesterday
  • I went to the nursery with Juan and got blue fescue & abutilon
  • A movie with Daniel Day-Lewis at is a movie about a smart person
  • My recumbent bicycle is set up and I am riding it
  • When they go high, we go low
  • Sunday itinerary- birthday party, BBQ and baseball practice. The whole day was like a giant “Affinity Group Hang.” I am accessing my community
  • Shout outs to Ted Purves
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New tests show T cell immunity. PLUS New pee pill prescription, indoor cycling, and lonely birria.

New tests show T cell immunity

PLUS New pee pill prescription, indoor cycling, and lonely birria

Listen to T Cell Immunity, the newest episode of the What’s The Matter With Me? Podcast.

  • Saw my neurologist
  • I have T cell immunity
  • r/multiplesclerosis
  • They prescribed me a drug for peeing oxybutinyn
  • He wants to see me virtually in 6 months, in person 6 after that, then repeat
  • Got new drink glasses at umami mart
  • My new recumbent bicycle is set up in the garage and I’m riding it
  • I made birria on a Wednesday It was depressing
  • But it smelled so good
  • I made pinto beans like it was Thanksgiving

Received: 3/14/2022 11:14 AM PDT
Dear John, This IGRA result proves you have developed Tcell immunity to the COVID coronavirus.
Great news, congratulations,
Very best of health, (name removed)

Note from my MS doctor
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episode cover

Wee Man Strikes A Chord

PLUS, disabled punks, Agnes Martin, choriço, Botox and The Red House (1947)

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Infusion, short roll, little league, Temporary Services, Sunday sauce
  • We went to marina park and rode the chair around. cut too short- kids played on a zipline & swings
  • I had a runny nose and tons of sneezing yesterday and looked up, “is a runny nose a symptom of coronavirus?” and it said yes it was
  • The steroids they gave me at my infusion helped the pinched nerve in my neck
  • Randy, the disabled practitioner. (It’s not my first time working with a disabled practitioner- see “New AFO Brace”)
  • Temporary Services’ Book Waste Book
  • Spanish Wordle hole in one
  • Ate Sunday sauce and it was too rich.. it wrecked me
  • Heard a Mississippi records special on the radio. “portland art museum”
  • give thanks and praise that I may be able to produce Hoppin Hot Sauce
  • Donate to your local nonprofit community radio station- get a t shirt
  • Wee Man had friends
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I’m feeling unmoored
  • Shout outs to Patrick who sent me a ted talk about chronic illness and using spoons as a metaphor to regulate energy- “Confronting the invisible” by Olivia Larner
  • Her talk centers around the idea that most people don’t see invisible disabilities
  • What matters is not how other people react to me, but how I present myself . I control what I can control. As ability changes, what you can control probably also changes
  • The frustration of becoming older and having your opinion be drowned out by a bunch of younger people’s opinions. Being disabled is similar in that your opinion is drowned out by more able bodied people’s
  • I heard Noam Chomsky’s podcast “Anarchism“- Noam Chomsky has a gravelly voice
  • Rockstacker & Condor: East San Jose characters. rockstacker.com is a thing
  • Olivia Lerner called chronic illness people “spoonies”
  • I like the old-school rapper Spoonie Gee
  • Spoonie Gee “Spoonin’ Rap“. I got that on twelve inch at Jerry’s Tecords in Pittsburg. RIP Jerry. went there in fall 2000, that was a dope record store. the worlds largest all vinyl record store. Jerry Weber died two weeks agar at 73
  • Used to play “Spoonin’ Rap” with Rick James “Cold Blooded” crunked out- those were the days!
  • Thinking about buying a case of Bordeaux and eating steaks every night because of this stupid ad
  • My stats showed and there are people listening to sequential episodes and on the one hand I’m like, don’t listen too close
  • I made easy food
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Getting outdoors, not rinsing the dishes, antibody test results, and staying simple in the kitchen
CLICK FOR TRANSCRIPT
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One-handed cooks and one-armed chefs to the kitchen: we’re looking at accessible cutlery, from knork to splayd
click for transcript
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Two years after my MVD surgery, checking in with how I’m feeling. Also: tattoo ideas, gettin’ paleolithic, different chorizos.

Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.

  • last borscht thing: Matt came over and had lunch and he said “it was the best borscht I’ve ever had.” Nami was there
  • not like he’s Lithuanian or anything.
  • I think Lithuanians eat it cold
  • Steve was talking about white borscht
  • Shout outs to Nathan Mary Butters and Tibby- thanks for the catnip hot sauce
  • Very Stable Genius is a good neck tattoo
  • I went to reddit to see if there were any posts about Epstein-Barr causation and there was only one in the Multiple Sclerosis forum and the study was met with an ambivalent reaction
  • We had white beans, kale, and dry chorizo stew. i talked to the butcher about the dry chorizo — joe: “is it chorizo, or is it choriz?”
  • “I’m in recovery again” update to my 2nd surgery in January 2020 – meds- relapses- where I’m at now
  • in Omicron isn’t milder for everyone I canceled my dental appointment but i just had it. I wore two masks for the first time
  • At the periodontist’s office all the doors are open because Covid so you hear everything- gross!
  • Thank you
  • Printer Poem
CLICK FOR TRANSCRIPT
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Epstein-Barr virus may be the leading cause of multiple sclerosis. I have a lot of leftover borscht.
  • The Epstein-Barr virus may be the leading cause of multiple sclerosis
  • Thank you for tuning in to the What’s The Matter With Me? Podcast
  • I do not think that having soup causes MS
  • I have a lot of leftover borscht and it’s not a bad thing
  • I feel bad for my wife who I threw in the gulag and forced to labor dicing up meat and vegetables
  • I had borscht for lunch today and I’m going to have borscht for lunch tomorrow
  • Shout outs to Ethan who’s a direct recruit from within the system, he was already connected we just had to screw him in
  • Hoppin hot sauce is the best sauce in the world