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.

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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

tomato

I read a script I wrote. We went to a wedding in Boonville.

Drawing

What’s The Matter With Me? Podcast, Episode 8: “Big Week”

My name is John, I’m 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I’m going through.

Recap Episode 7: “Bread Moment”

It was very hot, and now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it’s cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standards. Anyway episode 7 check it out.

Big Week

Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let’s go.

MS Doctor

Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scan can see.
Then we took a trip through my brain, it was kind of cool. My doctor was like, “Okay let’s look at your MRI. This is how it works top down.” He starts going through the images, wow.
We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That’s like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem.

Rituximab

We’ve decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I’m going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs.

The studies on rituximab are 18 months long. I haven’t reached that time yet so we’re going to continue my treatment, even though obviously I’m not healed and I’m still experiencing walking swallowing and thinking problems, among other things.
I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I’m stronger now.

Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It’s good!

AFO: Ankle-foot Orthotic

But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.

boule

Bread Moment

My name is John, I have MS, I’m 38 years old and I started this podcast to share what I’m going through.

Recap Episode 6

Episode 6: “Overwhelmed” was short but impactful the way short things can often be. Like Mike Tyson said, “Everybody has a plan, until they get hit in the mouth.”
Last episode was basically nothing but a long recap, and then I got distracted telling how I made tomato sauce. I gave up and I just stopped the whole thing after like two and a half minutes.

It’s very hot right now

It’s hot outside. I fell down yesterday in my garden. My thoughts bubble up through my mind like my mind is full of mud, like a primordial ooze and my thoughts bubble up through it. They come very slow, I’m like, “me hungry.” It’s like that.

Uhthoff’s effect

I feel some fatigue from Uhthoff’s effect, which was discovered in the 19th century by a German neurologist who discovered that people with MS feel bad when they’re in the sun. I totally agree with this.

Too much argument

I’ve been having a lot of arguments with my wife. I’m super short-tempered. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday and today, Wednesday, even though I saw her for only 5 minutes this morning I managed to get upset with her.

Being a salamander

It’s so hot I just don’t move. We call it being a salamander.I try and sit there and do as little as possible.

Josh is baking

My friend Josh is talking to me about baking bread and reallystimulating. I used to make a lot of bread. I’m in the hot sauce business, but I thought about making bread and coffee and I still think about it. I love making bread and growing plants. I’m a gardener, you know it’s all like making bread, growing your family it’s all the same having a garden, pruning a plant. So it is stimulating to hear that Josh has been baking bread.

Dinner with Margarita

One time I went to dinner with my friend Margarita. She was the bartender at Casanova in the Mission on Valencia Street and across the street is this Mexican spot Puerto Alegre. They really had kinda Tex-Mex, it wasn’t high on the list for Mexican places but they served a blended margarita in pitchers and when I was in my twenties, I would just wonder, how many pitchers did I drink?
So I went over there with Margarita, I was in town from New York where I was living in Brooklyn at the time, I was visiting town. I looked up Margarita and we headed over to Puerto Allegre, and Margarita is a Mission bartender, she’s been a bartender at many bars in the mission for a long time, like 20-something years, and she knew everybody. When we went to Puerto Allegre, she knew the waiter, and he said, “Oh hey Chad Robertson is over there you know those Tartine bread guys?” Actually he said, “You know those Tartine Bakery guys? But I knew them as Tartine Bread guys because they had a book about how to make bread that I would obsessively follow in my Brooklyn apartment.

Chicken

It was an amazing moment, Chad Robertson sitting across and Margarita there, and I had one of those moments in my life, where I totally chickened out. I didn’t get up and say, “Oh my goodness Chad Robertson I have been baking your bread every day but I am quite an amateur and I bet you have so much to say, so interesting, I’m so glad to meet you,” – no, I did none of those things, none of that. I stayed in the corner and I was like, “oh cool.”

Tell your hero

It haunts me to this day. So it’s good to say in this podcast. One of the things that’s what’s the matter with me is I regret not meeting Chad Robertson and the other Bakers from Tartine Bakery. It was 2008 at the time and this was very interesting stuff. Nothing happened, because I chickened out.
Don’t do that, is my advice. If your hero is sitting across from you, and somebody asks if you want to meet them, you should say, “Yes, I want to meet them right now.” Tell them how much they mean to you and tell them they’re your hero. I wish I had told Chad Robertson that.