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.
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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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Read moreI have a wheelchair and I busted it out over the weekend. It was kind of a big deal. I’ve never ridden around in a wheelchair before. We’ve talked about it before on the podcast that I’ve got the wheelchair, but also that I’m kind of apprehensive about riding around in a wheelchair. But I did it. I was with my family. I had gone to see my cousin Amy in the hospital where she’s recovering. We talked about that last episode. And then my wife who had been in nanny in San Francisco was like, “There’s a playground right around here in Golden Gate Park and kids love it. Let’s go there.” And I thought, “maybe I’ll ride my wheelchair around.”
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Read TranscriptMy brain chemistry, the amygdala, stress, fight-or-flight part of my brain is throttling my hippocampus, which is the intelligent part of my brain. The fear and anxiety part of my brain is getting the upper hand because of all of these traumas that are happening right now. I’m recording this episode to try and get it out there to say it all and to hopefully move beyond some of this fear, trauma, and anxiety.
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Read moreI have a lot more energy and I am much more present. I’m able to think complicated thoughts.
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Read moreSo they were like, “Something is weird. We got to put the EKG on him.” But I’m like a hairy individual, you know? So they got out the trimmers, they’re like, “What?” They’re just like, “What do we do?” … she says to me, she’s like, “Don’t worry. After we’re done, I’ll shave the rest.” I’m like, “Hell no you won’t shave the rest of my chest. Are you kidding?” I think of my chest hair a little bit like Samson, you know what I mean? Stay away from that. Come on, give me a break.
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One thing I did notice about the last episode is that I’m flapping my arms again. I first figured out of it about flapping my arms in episode five:
“and this is kind of joking, I guess. I get nervous, you know. You know, if you ever see me like making fart noise or flapping my arms, you know, somebody very close to me has died.”
What it means, basically that. When I’m flapping my arms again, you know I’m scared. I make jokes, it’s because I’m scared.
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Trigeminal neuralgia hurts like hell. I’m going to have micro vascular decompression surgery, get out of pain, get off these pain medications, and contribute to my family again.
Read moreI signed up to have surgery. They’re going to pop a hole in my skull and operate on my trigeminal nerve. It’s called micro vascular decompression surgery.
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