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.
Day 23 of self-isolation
click for transcriptI’m going to try practicing some acceptance to get through this terrible experience of confinement, which is worse than usual.
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coronavirus isolation has my mind stressing, the amygdala, anion mal brain underneath the hippocampus, the thinking part of my brain.
CLICK FOR TRANSCRIPTLooking 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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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.
click for transcriptLOCKED 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.
click for transcriptShe 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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I even found some podcast statistics to prove it.
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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CLICK FOR TRANSCRIPTIn 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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Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
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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