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.

sauce pan on stove

Overwhelmed

In Episode 6 I get overwhelmed and hang up the headphones in the middle of the episode. On the one hand, it’s a pretty terrible episode because of that, but on the other hand, it is good to know that I can feel bad and recover. I certainly don’t feel this way anymore. It’s hard to slur your words on the mic.

Books / Can’t do what your parents do

A listener wrote in to correct me about some books that I touched on in the last episode and I took this opportunity to set the record straight. Tony Robbins wrote Awaken the Giant Within. Dale Carnegie wrote How To Win Friends and Influence People. Steven R. Covey wrote that 7 Habits of Highly Effective People.

Good information

My Mom had these books and that’s why I avoided them. I was a childish child. They probably contain a lot of good information.

All right?

I feel all right. I don’t have to go to the doctor.

Sauce

I made tomato sauce with 5 tomatoes that I grew. I have a hard time explaining how I made it. It gets hard for me to talk, hard to say “5 of them”. I’m slurring my words. I get frustrated and hang up my headphones. I’m feeling pretty low, after all.

Welcome back to the What’s The Matter With Me? Podcast for Episode 5: Gallows Humor

In this episode, I have bad reaction to an MRI, suffering fever and headaches for days.  I come through it with the help of my wife.

Recap Ep. 4

Recap – last episode, I tried to wrap my head around the idea of asking for and receiving help.  A listener wrote in to tell me that asking for help increases effectiveness.  We talked about the determination to continue despite the demoralizing nature of the therapy process.

Bad MRI

I had bad reaction to an MRI last week.  I reacted to the contrast dye injection.  I had a headache and fever for a couple days.  It took a lot out of me.  I was bedridden.

Gallows humor

If you ever see me flapping my arms and making fart noises, it means someone close to me has died.  I am inappropriate.

I’ve been feeling very down since the MRI.

New Lemon Flavor

In some sign of normalcy, I cooked Hoppin Hot Sauce, trying out a new Meyer lemon ingredient that my co-packer sent.  The results are promising.

Plants are growing in my garden – see you next time

garden

Welcome to Episode 4 of the What’s The Matter With Me? Podcast

In this episode, I continue to think about how to ask for help with the shower safety changes that I need, do some physical therapy, and finally pick up the phone and ask for help.

Recap Ep. 3

Recap – last episode was about asking for help. It was hard to record because I didn’t know that’s what I needed to do before I began recording.  I figured out while I was on talking about it that so many of my great friends and family would be happy to help, and that all I had to do was ask.

7 habits

A listener, my only listener at that point, wrote in to say that accepting help builds bonds.  It’s one of the Seven Habits Of Highly Effective People.  That’s a famous book that I avoided because my Mom owned it.  I’m grown up enough to admit that it’s probably got a lot tof good information.

Never quit

I can’t quit, even if I make bad episodes.  Last episode, I said “Dude,” revealing that I am a Californian from the 80s.  It’s OK with me to let you know that.  “Woe is me,” I meant.

Therapy is hard

They ask you to do the things that are hard for you.  I’m putting off using it by working on the podcast.

Phone call

A good resolution to the last episode was that I called my stepfather to talk about what I needed in the shower, and that was enough to get things moving in the right direction.

Parking Lot

Welcome to the What’s The Matter With Me? Podcast Episode 3: Help

Recap – last episode we talked about being in control of my emotions.

Episode 3 revolves around having to ask for help to install shower handles so I can get in and out of the shower.

The are a lot of complicated feelings that go with that.  I need help, but I don’t want to ask, and I especially don’t want to ask my Mom for help.

Bsmboo

Welcome to the What’s The Matter With Me? Podcast Episode 2.

In this episode, I struggle to control my emotions due to damage in my brain stem.

What’s The Matter With Me? is a podcast about multiple sclerosios, and many other things.

Recap – should I be on disability?  My philosophy.

I said I can’t – in violation of my philosophy, which is that I generally can do things.  I can work.  This podcast is about trying, and I’m not afraid to try and succeed and achieve.  I believe that I can achieve regardless of the difficulty.

I have a lot of brain stem disease activity, and it can make staying in control of my emotions difficult. I’ve been having difficulty with my morning routine on the weekends when my family are around. I have been meditating first thing in the morning, with some success.  It provides some perspective that helps me get through the day.

hardscaping

Trying

Without further ado, it’s time to go back to the beginning: Episode 1 of the What’s The Matter With Me? Podcast, “Trying”.  What’s The Matter With Me? is a podcast about Multiple Sclerosis and many other things.  Only a few people ever got this, over e-mail.  In this episode, it’s the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision.

Droll

It’s the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.

Occupational Therapist Julie

I went to Stanford to visit the occupational therapist.

We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment.

I got on a tangent and had to flush the segment down the toilet. I start over again.

I ask Julie if I should be on disability. She explains how it could help me, and my business..  I tell her the blanket analogy – that MS is a heavy blanket. I tell her about how I believe in trying, and that is why I made this podcast: to try.