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.

I had to take the episodes down for maintenance

I had to take all the episodes of the What’s The Matter With Me? Podcast down for maintenance.  I’ll be putting the episodes back online ASAP.  I hope to have Episode 28 back up today, and I’ll start from there.  I’m sorry I don’t have what you are looking for.  Stay tuned to What’s The Matter With Me? for more.

 

hand

It’s a New Year and time to move forward

Last episode of What’s The Matter With Me? Episode 27 wasn’t very focused and I could have explained myself and foregrounded what is going on with my Multiple Sclerosis disability more effectively.  The title of this podcast is What’s The Matter With Me? after all. I resolve to run things a little more by-the-book this year.  For this episode, at least.

Cafe Oto

cafe oto street scene

Crowd outside Cafe Oto in Dalston, East London

Last episode,  I reviewed Marshall Allen’s Volcano Quartet CD Volcano Swing, a live performance at the BBC in London, where he was in town for three nights at Cafe Oto.  Listener Chris lives there and wrote in to let me know about the location, in Dalston, East London, and some live shows he had seen there.  It sounds groovy and I hope to check it out myself someday.

Never give up

I can have a bad episode.  A terrible episode.  Ghastly.  But I won’t give up or cede an inch in any direction.

I discussed in Episode 25 as well as Episode 4 that I won’t give up.  The pressure to give in and let go of the rope and drown in my disability is extreme.  Multiple sclerosis is suffocating and pervasive.  I have been dumped and it felt very bad — I bet that anybody having a hard time with something feels the same.

Tapering Medication

I called my neurologist to request help with tapering down Gabapentin, they said I’d get a call-back in 24-48 hours, but they called me back in about an hour.  I was concerned because I had adjusting my own dosage without any guidance, which is bad practice.  The nurse told me that my dosages had been fine, and outlined the boundaries for my pain meds.  My dosage is back to normal, and I am not in pain.

No-tie Shoelaces and shoelace replacements

I’ve bit the bullet and decided to get rid of my laced shoes.  I’ve got some no-tie shoelaces which turn my shoe into slip-ons.  They’re working OK but my shoe feels like it might fall off.  I’m glad to be done with shoelaces because they came untied and I wouldn’t retie them.  I’ve got some shoelace replacements in the mail.  I’ll go over them in an upcoming episode.

Disability Visibility Project

Disability Visibility Project Alice Wong icon

Disabilty Visibility Project Alice Wong icon

Disability Visibility Project is a platform for creating, sharing, and amplifying disabled voices created by disabled activist Alice Wong.  I said in Episode 25 that in 2018 I would bring new voices to the podcast and the Disability Visibility Project is part of that effort.

Interrupting the Uninterruptible

I hosted the Blues Collective with Jack Tar from 10am to 2pm on KFJC yesterday,.  For the first hour, Jack plays the music and runs the mixing board while I sit below in the interview area.  At 11, we switch places, and I run the board and he is below on the mic.  We do it again at noon and at one.

While it was my time to run the board, I played the same song twice.  I put my foot on the wrong place and unplugged whata the engineer told me was the “Uninterruptible Power Supply” — it turned off the CD players, the lights — pretty much the entire station!  I ferlt like I lacked focus or was fatigued, and I messed up the show.

Everybody feels that way sometimes.  “Uninterruptible”?  All I had to do was unplug it.

New Year’s Resolution

Talk less, act more.  This podcast is a bit of both.  Don’t think too hard about it.

Carpenteria californica, bush anemone

Episode 27 “New Blog / Throwback Episode 4: Help”

As my limitations from multiple sclerosis increase, I’ve had to get comfortable asking for assistance.  Asking for and accepting help is one of the secrets of effective people. Or so I’m told.

Winter rolls on. I continue to produce content and work on the site daily.  Being with family and experiencing multiple sclerosis or disability can be difficult to manage, and pressure only increases during the holiday.

Papa’s Got A Brand New Blog

I’ve added a blog to the site, and I discuss my first post, about a disabled woman’s social isolation.  Episode 4, “Help” from the pre-history, chronicles never giving up, in an echo of Episode 25.

I never stop reviewing records

I am reviewing Marshall Allen Volcano Quartet’s CD Volcano Swing. Marshall Allen was part of the Sun Ra Arkestra and this band is a continuation of that.  They were in London in 2011 when a volcano exploded in Iceland, grounding all flights. The band took a three-day residency at Cafe Oto in North London.

They stopped by the BBC Radio to promote the gig and recorded this CD. At the end of the CD there is a live interview and Marshall Allen reveals that he was a member of the Sun Ra Arkestra trapped in Seattle when Mount Saint Helens exploded in 1984.  Pretty awesome, it makes it clear that a musicians life is always about getting that next gig in line.

Episode Synopsis

  • It is cold in the garden and there was light frosting a couple of times this week
  • I’ve got a new blog
  • People in wheelchairs are judged and face cruel realities
  • Marshall Allen Volcano Quartet “Volcano Swing” CD review
  • Throwback Episode 4 “Help”

The holidays are almost over — just New Year’s. Hopefully I’ll hike somewhere good.

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.