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.

Portrait

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.

Big Relief

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Thank you for tuning in to the What’s The Matter With Me? Podcast.

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Tuesday Appointment

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Tuesday Appointment
  • KFJC fundraiser begins today
  • My kids are with my mom and my stepdad Dave
  • Yesterday I sent some hot sauce to a new local account
  • I’m going to have a video meeting with my neurologist on Tuesday
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Writing Fundraiser Scripts

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  • The annual fundraiser is coming up at KFJC starting at the end of the month.
  • I’ve been recording fundraiser spots for about 6 years. my first one was about a person taking a taxi. I do one or two a year.
  • I always enjoy writing, and every good spot starts with the script.
  • This year, I wrote four, and I read them in this episode, along with an older one from 2016 that resonated with me.
  • Writing these scripts has been a positive creative outlet.
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Under a Martian orange sky

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  • I saw the surgeon who performed my microvascular decompression surgery.
  • I went to my Ukrainian dentist a couple of weeks ago, she is the one I called, “The Iron Curtain.” 
  • I am not in trigeminal neuralgia pain anymore , and my life has changed for the better.
  • Now that I can shave my face, I’ve been wearing a mustache.
  • I am a lot happier.
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Touchbase

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Still under lockdown. Touching base with the podcast, stirring the pot.

  • John John broke the power button on my computer so it’s at the tech support
  • In a week it will be six months of the coronavirus shutdown
  • Shout out to Brian and Katie
  • Mom’s birthday today. Oysters and cake
  • 4th week of school
  • Backgammon
  • The comic garage 10 comics a month 21.99
  • Spanish posters, letters, numbers, colors, feelings
  • Maps of the world
  • English motivational kindness posters about being a buddy not a bully
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Using Our Voice Makes It Stronger

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Disabled voices are just like regular voices, just like anybody. Using our voice makes it stronger, and it’s doubly true for disabled people who’ve been disenfranchised, and hidden away, and censored.

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Compounded Trauma

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Compounded trauma is when things make us upset, because they remind us of traumatic situations that we’ve experienced before, causing us to relive them.

When I feel this way, naming the feelings I am having, and explicitly connecting them, can be a way to overcome them.

The thing is, my wife likes creepy stuff. I don’t like watching surgery. When the scalpels come out, I check out of the movie.

Thank you for tuning in to the What’s The Matter With Me? Podcast. This episode is about compounded trauma, reliving trauma, traumatic experiences that we’ve had, and just living and multiplying, compounding them, living them over and over again.

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To overcome isolation, we need to put ourselves out there

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We all need to put in effort to get ourselves out there, because it can be hard on your mental health to be so isolated. It’s important to be part of a community, and be involved, and have exchange with people.

  • I’ve been spending a lot of my creative effort trying to keep my business open.
  • Crippled crisp review is two disabled Dutch comedians eating potato chips together.
  • I have begun producing radio shows in my home Studio. The first one will air Thursday.
  • People are experiencing part of what it is like to be a disabled person.
  • It is hard to get around. Hard to participate. Hard to interact with each other. It can be isolating. For our mental health, we need to get out there.
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Day 67: New Brace

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Day 67 COVID-19 self isolation

I’m working in the garden, while wearing my new AFO brace in this episode of the What’s The Matter With Me? Podcast.

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This time is important

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Two months into coronavirus self-isolation, I’m thinking about how this is an important time, one that we’ll remember forever and that our kids will also remember. In this episode of the What’s The Matter With Me? Podcast, I’m thinking about the importance of this time.

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