My name is John,

I’m 40 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.

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Hearing the sound of missing teeth. Night driving. Hanging out at Cato’s Ale House felt like a win.

Notes

i went to the dentist he gave me false teeth to wear until they start implanting things
theyre aesthetically convincing,
theyre uncomfortable
cant really eat with them, and eating is the purpose of life.. so i question their appropriateness
can’t drink wine with them – taste/tongue movement

i went to catos ale house
i drove there at night, it’s just 15 minutes up 580 .. it was scary
i got the most lucky parking spot right across the street

i went to catos to meet joe, connor, and jerry
it was the first time i met jerry
he complemented me on my shoes
no one ever has complemented me on my shoes that i wear now that i wear a brace that severely limits my footwear options
i told him that i wore a size 6W to fit my AFO
he described them as basic black velco leather slipons and that he was always looking for them
he must have been drunk or crazy
jerry complemented me on my shoes

i used to live on howe street, in a garage in the back of the place, twenty years ago
in college i used to rent garages to save $20 bucks
i always lived outside, or i slept on the couch,
i was like a wart in your living room that never came off or iff you did get it off, it would come back
in my 20s i was always taking up the low lying area

i went to catos, for pandemic, people sit in the employee parking lot like a bunch of off duty parking valets
i was kind of mentally psyched out about going
i went and i had one beer,
a “kicking it old school best coast pale ale” from Canyon Club Brewery in Moraga
that joe bought me
but thats it i promised nami
then i drove home

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My teeth are knocked out, Val Kilmer’s new film “Val”, Representing the disabled body

My teeth are knocked out,
Val Kilmer’s new film “Val”, Representing the disabled body

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We’re going on a family vacation and it’s something to be proud of.

It’s an accessible vacation- all the attractions have paved paths. We’re staying at a place with a pool and AC. I’m cauitiously optimistic.

PLUS, Cult episode!

What if this was a religious or cult podcast? Check out this episode to see how it would be.

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In this episode,

  • Where’s your head at?
  • I need to record my activity as an Amazon seller in Quickbooks. It’s creating stress.
  • I ran into a lady at the gym and forgot her name. Her name rhymed with her husband’s and was ambiguously gendered.

Listen to the episode to hear how it all went down.

Click for transcript
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Talking about putting myself out there. I realized I always put myself out there. I mean, you’re listening to it… Goes along with one of my biggest fears… losing the ability to express myself.

I was on the radio yesterday morning and it got me thinkin’. I’ve always put myself out there- ever since I was a teenager and probably before that. Just to have something to belong to. We go over a timeline of examples.

I’m getting more disabled and things are getting harder for me. My biggest fear is becoming voiceless and invisible.

read transcript
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Thank you for tuning in to the What’s The Matter With Me? Podcast

In thise episode, “On The Zon,” we discuss:

  • The barbecue works
  • The sauce is on Amazon
  • I fell at the gym
  • What is Jeff Bezos’ phone number?
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My first workouts since coronavirus are a mixed bag.

Just got to put my head down- probably everybody feels the same way.

Shout outs to Nami

Rocky came over and we had veal ossobuco and saffron risotto

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At the Cobbler

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Working on my brace. PLUS: summer camp, driving, Flip A Coin Day

Koko’s At Camp

Koko’s finally at Summer Camp. The frustration of being a disabled father during Covid-19 was intense. I have two hands but one isn’t very useful, leg is the same, so doing projects with either kid has been difficult. It feels like we’re about to turn a corner.

Getting My Confidence Back

I have been trying to get back the ability to drive again. I’ve been driving little drives every day. But yesterday, I drove 4 and half miles. I’m getting my confidence back.

Mel’s Shoe Clinic

I went to a cobbler, Mel’s Shoe Clinic in Castro Valley, to work on my AFO brace. He did a great job and it was a big revelation. It was fast, cheap, and easy, and I’ll definitely do it again.

Flip A Coin

June 1st, Koko’s birthday, is also national Flip A Coin Day. Go ahead and celebrate her belatedly.

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Going outside of my comfort zone

Crossing Boundaries

Going outside my comfort zone

In this episode of the What’s The Matter With Me? Podcast, “Crossing Boundaries,” I’m going outside my comfort zone.

I printed the Amazon shipping label- I’m going to try selling some Hoppin Hot Sauce on Amazon, to tie my product to a strand of hair on the giant beast that is Amazon.
I submitted my poetry to a poetry journal for the first time since high school.
Some friends came over and I cooked the right amount, it wasn’t too stressful, it was a good example of the goals I discussed in Cooking While Disabled. It was good food and made for a good time.
After receiving my certification from East Bay Paratransit, I got approved for the San Leandro Flex Ride program, and took my first journey to Galvan’s Market and bought a lot of meat.
For my second journey, I went to Crimson Horticultural Rarities to get some indoor plants. Overall the Flex Ride experience was a mixed bag but I will try it again.

Listen in to get the whole story,.