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.

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

folder

Welcome to What’s The Matter With Me? Podcast Episode 16

Lamp destruction – Cognitive Exercises – Best American Sportswriting 2015 – Electromagnetic sock sales – The importance of this podcast

yard

Welcome to What’s the Matter With Me? Podcast Episode 15

I start the episode off with the handicap space for the third episode in  row.  My garden gives me room to breathe from the grasp of disability — but I supplement with physical therapy and mindfulness practice.
I’m teaching my son to watch birds and he made a correct identification.

Handicap space Part 3 — Falls — Tomatoes — Gardening — Socks — Disability — Bird ID

Oyster with Hoppin Hot Ssuce

Hot Sauce On An Oyster, photo by Brook Lane.

 

What’s the Matter With Me? Podcast Episode 14:

Autistic son

I read the NY Times Disability column about an autistic son finding purpose.

Hot

It was hot: 114F!

Fell and hit my head

I fell hard and cracked my neck on dining room table.

20th High School Reunion

I looked for acceptance at my 20th HS reunion.

Nami & I

I took this picture with my wife at the home of the Japanese Consul General in San Francisco.

What’s The Matter With Me? Podcast Episode 13

Figs growing in the garden — Charcot’s Triad — Feedback — 109 Degrees — Friends — Defending the handicap space

Hoffee's Auto Body

This is a photograph of Hoffee’s Auto Body Shop in San José, California on the last day of business before closing. David Li owned the place and was my family’s mechanic for over 20 years.

Episode 12

Figs — Gruesome Fall — Charcot’s Triad — Controlling Emotions — Burn at the BBQ

I’ve been falling and hurting myself. I need to slow down and be safe. Hurrying makes accidents. At the same time, I need to control my emotions and manage my MS therapy for the sake of my family and my business.

self and photo

Birthday Party — Steak — Cognitive Disability in the Dressing Room — Fish Oil — Garlic Season — The Deaths of Ted and Larry — Stone in the Ocean

Finish

What’s The Matter With Me? Podcast Episode 10

Purpose — Ep. 9 Recap — John John Sick — Ballgame Fiasco — BBQ — Crying, Pressure — Rose Trimming