My name is John,

I’m 40 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.

I created the What’s The Matter With Me? Podcast to share what I’m going through.

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I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person 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 public interactions that create new conditions 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.

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

Day 42 of Covid-19 Coronavirus quarantine finds me thinking about the value of disabled life.

What is the Principle of Non discrimination?

The principle of non-discrimination seeks “to guarantee that human rights are exercised without discrimination of any kind based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status such as disability, age, marital and family status, sexual orientation and gender identity, health status, place of residence, economic and social situation”.

Committee on Economic, Social and Cultural Rights, General Comment No. 20, Non-discrimination in economic, social and cultural rights; 2009.

Do disabled people deserve assistance even though they may require more resources than the ‘average patient?’

(When too many patients are in urgent need at the same time), some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.

Ari Ne’eman, ‘I Will Not Apologize For My Needs,’ New York Times, March 23, 2020.
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Day 23 of self-isolation

I’m going to try practicing some acceptance to get through this terrible experience of confinement, which is worse than usual.

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Day 14 in isolation

coronavirus isolation has my mind stressing, the amygdala, anion mal brain underneath the hippocampus, the thinking part of my brain.

Looking around at the newspaper, it seems like there’s a lot of nutso animals on the prowl right now in our culture and around the world. And it’s a lot of stress. It creates this stress, it’s bad for MS, it’s bad for many things. Almost anything that’s wrong with you, you could do without some stress to deal with it, you know? So, people are not functioning in their highest level right now because of all the stress.

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A crash course in distance learning

I recorded this message on lockdown. I can’t go anywhere due to the coronavirus pandemic and my multiple sclerosis condition. I’m in my house with my family, trying to educate my kids and keep their development on track. We’re taking a crash course in distance learning, e-learning, online education, or whatever it’s called, sooner than any of us thought.

LOCKED DOWN in California. Using my wheelchair to get around the neighborhood. Spoke to the teacher in a Zoom conference. Distance learning, ready or not. In the virtual classroom. Online learning resources from the library. Immersed in the distance learning environment overnight. I may be related to teachers. Spanish lessons.

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The orthotist came up with a second brace concept, and I went back for a fitting that left me feeling a bit dejected.

She took a video of me walking in the examination room. She showed it to me after. It was framed from the knee down. Looking at it made me feel really disabled. I felt ashamed of myself. I felt sorry for myself. it was kind of nauseating. I looked at myself as an object. I felt disgusted.

I apologized to her for walking so poorly. She was surprised. Raising an eyebrow, she told me I had nothing to apologize for.

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People are listening

People are listening to the What’s The Matter With Me? Podcast.

I even found some podcast statistics to prove it.

  • More people listened than ever last month.
  • They come from a lot of places around the world, and different places in the US.

We’ll cover all of our podcast statistics in this episode of What’s The Matter With Me? Podcast, “Podcast Statistics.” Click below to read the transcript.

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"New AFO Brace"Cover

In this episode, I went to get a new ankle-foot-orthotic (AFO) brace. basically, a rigid ankle brace. Things got emotional.

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I'm in recovery again

I had microvascular decompression surgery to alleviate trigeminal neuralgia, and now I’m in recovery again.

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I’m changing the format.

Plus, listen to the new theme song for season 4!

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I went to Costco on the Saturday before Thanksgiving. On accident, of course I didn’t think about it.

I went to the Cantor Arts Center at Stanford University.

I had to position myself to avoid the glare. The Rodin, they had “The Thinker”. So, I went into the gallery and saw that and I had to kind of position myself all around it. And because you have to spend so much, because I had to spend so much time positioning myself, I couldn’t do this kind of casual looking. It really changed the way I looked at stuff. I had to look kind of more actively. It was interesting. Anyway, it was just a really cool experience having been to so many art shows in my life. It was totally new way of doing it, but I enjoyed it. I did it. I’m going to do it again, I think that’s cool and so cool stuff with the wheelchair, positive things.

I appeared on another MS Podcast, the YEG MS Podcast. Read on..

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