My name is John, I’m 38, husband, father to 2, I have multiple sclerosis, and I created the What’s The Matter With Me? podcast to share what I’m going through.

I believe in using the transformative power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Every man 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 interactions in the public sphere that create new connections 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.

Cover of What's The Matter With Me? Podcast Episode 26

Slogging through the holiday with MS and trigeminal neuralgia pain
I fell and ripped out the belt loop from my carpenter pants
Throwback to the pilot: Episode 5 when I had an MRI reaction and a boil on my butt – gross

Mary from Friends NYC @friendsnyc picked out this sweater

Cutting board

I‘ll Never Give Up – Look at my window: I’m alive.
I didn’t quit doing this thing that is very scary – to share.
I have built my disability consciousness and that will continue.
I am going to bring new voices to the podcast in 2018.
I figured out what I’m going to do about the handicap space at my children’s School- get help from the administration.
I am going to release the email only episodes to get ready for the New Year.

The photograph is of an accessible cutting board I recently began using.

6 inch diameter hole in drywall

What’s The Matter With Me? Podcast

Episode 24: Hole

Recovering from Multiple Sclerosis and moving my small hot sauce business forward

“Hole in the wall”, A fall story

I tripped over myself  in my bedroom and punched a hole in the wall.  It was klutzy and embarrassing, but at least the wall took the worst of it and I came through okay.

I’m in recovery

My Nurse Practitioner told me I was in recovery from MS and that changed my perspective.  I have been in a defensive stance, and I can begin to makje positive steps forward.

Hoppin Hot Sauce — Extra Hot

I’m spending all of my time creating a new flavor of Hoppin Hot Sauce, Extra Hot.

Positive vibes

Keep things positive and moving forward in a good direction, and everything will be all right.

Studio

Episode 23

Thank you for tuning in to the What’s The Matter With Me? Podcast.  In Episode 23 Roll With The Punches I fall asleep at the KFJC meeting, hang in the yard, experience intense Trigeminal neuralgia pain, and read an old song lyric I wrote called “Roll With The Punches.”

Fatigue

I fell asleep at the KFJC weekly station meeting and that was distressing.  I woke up and everyone was looking at me.  It shook me and later in the evening I fell off the station couch awkwardly.  I go to KFJC to relax and these kinds of things make that difficult.

Yard hang

I went in the yard with John John.  It was a sunny warm day and we took our shirts off, wrapping them around our heads.  We laughed a bit and smiled.  It was a good thing.

Trigeminal Neuralgia Pain

I have been experiencing pain from trigeminal neuralgia in my right lower jaw on the buccal side.  It feels like going to the dentist, and when they say “it’s going to pinch” before you get novocaine and then it pinches and won’t stop pinching all night long.  It’s very hard, and I hope it stops soon.

Poetry reading: “Roll With The Punches”

I read a song I wrote called Roll With The Punches.  Check it out:

Roll With The Punches

You gotta roll
With the punches sometimes
Sometimes,
You gotta roll

You gotta know
Who’s on your side
Just as much as
Who’s passing you by

Don’t have no glass jaw
O Hell Naw
When you get knocked down
You gotta stand up tall

You gotta bend but don’t break
Give em all they can take
And a whole lot more
Until you hear em hit the floor

You gotta roll
With the punches sometimes
Sometimes,
Sometimes.

 

-John Hoppin, 2013

 

John

Welcome to What’s The Matter With Me? Podcast Episode 22, “Gallons, Untied Shoes, Commes des garcons/Rei Kawakubo, Surplus Store Shopping”

In this episode: New hot sauce size — Disaster: Shoes came untied — Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes — A good time shopping at the surplus store

New hot sauce size

Hoppin Hot Sauce now comes in gallons, for my foodservice clients.  It’s so they can re-use bottles.

Disaster: Shoes came untied

My shoes came untied durinf my radio show and my cohost untied them.  He was older than me, and it was thought provoking.

Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes

It’s ungainly and strange; people look at you funny.  No one, including myself, knows quite what to do.  I read some commentary about the avant-garde fashion designer Rei Kawakubo and I found commonality with my experience as a disabled person.

A good time shopping at the surplus store

I went shopping with my family at the surplus store.  We got a lot of things that we needed, it wasn’t too difficult.  My family helped me a lot.

Tracksuit folded up at the black and brown thrift store

Welcome to What’s The Matter With Me? Episode 21, “Complicated feelings about Federal Disability, Falling, Nasty Tracksuit”

In this episode: Qualifying for Federal Disability Pt. II — Two Falls, One Painful, and The Other With Wine — Going Shopping and buying a tracksuit with filthy pictures on it that my wife asked me not to wear around her or our children

What's The Matter with Me? Podcast Episode 20 Cover

Welcome to What’s The Matter With Me? Episode 20, “Disabled dad struggling to build my business and my life”

In this episode: I Fell — Sweating — Boathouse Hike — Secretary of State — Hot Sauce Business — Disability

Hand rails are useful for people with MS and other disabilities. I took this photo outside my dentist’s office in Santa Clara, California.
Achillea millefolium var. californica

Welcome to What’s The Matter With Me? Episode 19

Wild Fires

Wildfires are burning close to my family’s home in Santa Rosa.  The hill behind the house is Annadel State Park, currently on fire, and the fire department is bivouacked in the otherwise-evacuated neighborhood.

Accessible music

I’ve been making music to meditate and feel and comfort my body, accessible music using the computer and MIDI.  I am getting used to making “muzak” on the computer, and pushing my own boundaries.

Houseguest

I have a houseguest, a person that I don’t know very well.  It’s fun.

Leg pain

My leg has been bothering me.

Herb spiral

Welcome to the What’s The Matter With Me? Podcast, Episode 18

In this episode:
Fight/Cook Cycle — Spare rib recipe — Artist Statement
An artist statement is hard to write — it requires you to believe in your own importance.

Bench at the San José Municipal Rose Garden

Welcome to What’s The Matter With Me? Podcast,Episode 17

Nurse Practitioners — BBQ — Sunday date blowup — Cognitive wall — Foot Wound — Radio — I’m proud to be disabled