I’m 43 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.
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.
Shout outs to the ceramicist brian R. Jones who likes the longer episodes- he makes the stuff at brianrjones.com
he hangs out in a ceramics studio. i attended Alfred University for a single semester and I got him and Steve there
try to calm down and go slower
I revisited the last night for dinner journal, it had been 13 months. Last night For dinner we had left over meatloaf and martini’s made with cheap gin but at least there was plenty of it
5 oz gin to 1.5oz dry vermouth, garnished with banana peppers. it wasn’t very good
me & my wife: Ronin commonsense media sounds like the answer is, sounds fine/ no
bunch of ex-govt spies fighting over a briefcase
went over it last time: Elon musk is named after a smell, On the other hand John Hoppin is the name of a less wealthy and less popular smell that doesnt own twitter
I’m riding the exercise bike 2-3x per week
I got asked by another parent in San Leandro if it had happened to me recently and for a moment i wasnt sure if they meant the wheelchair or MS
i told them that i had the wheelchair almost a full year before i would ride it around in public
it was recommended to me by an occupational therapist at the stanford neuroscience a couple years before that
she told me it would help me get there- not spend my energy to get there
i’m tired of falling and hitting my head and having to get staples in my head
Reading foreign cuisine cookbooks- Ethiopian smoked milk or water
Going to dinner at a Moroccan restaurant on Saturday
My wife wanted to support the idea of journeying to Ethiopia
Roger Maris visited JFK in the white house in his capacity as MS Society’s national campaign co chairman in 1962
Last night for dinner and the night before i had pb&j for dinner
went to my 2nd kfjc meeting since corona, raided the spliff bin
Wet leg, kyle ranson
Took the kids to baseball, made dinner, all by myself but i had help. The burger place closed
i was afraid i would lose my license
Dmv worked
Hayward dmv was cool
the guy had a hat that said oldies car club and the bull was scrunched up like anthrax – he told me i should work there
so i’m afraid tommy lee jones is going to pull me out of line so he can show me some of his techniques
ignoring disabled people all the way up to euthanizing them are on a spectrum together (like the way microagression and out right aggression) are both kinds of discrimination
Need advice about a wheelchair lift for the car, i know there a re listeners who use wheelchairs, i need to get a machine that takes my chair out of the car bc i dont like someone doing it who is either a woman or older than me.
its for the optics
Have you heard the sound of the atmosphere dragging across the Earth
It’s the What’s The Matter With Me? Podcast Birthday Special Episode, featuring Elon Musk, Chowhound & chicken sandwiches
Thanks for tuning in to the What’s The Matter With Me? Podcast “Birthday Special”
My birthday is coming up so let’s have a Birthday Special episode that’s mostly about chicken sandwiches and twitter. Are you all strapped in? Great- let’s get to the rundown:!
It’s going to be my birthday next week and I want to go to eat at a Korean restaurant that was sold last year.. Instagram says it looks the same, but there’s no BBQ in the pictures.
Instead, it looks like I’m going to have a fried chicken sandwich for lunch on my birthday
Chowhound is gone and the internet is useless without it
The sink in my kitchen is out of order, my birthday is coming up and these were the reasons I needed Chowhound
Thank god for our cooking group
You get out what you put into life, reggae sing lyric
https://whatsthematterwithme.org/wp-content/uploads/2022/04/birthday.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-04-22 18:29:532022-04-22 18:29:55Birthday Special
Lady asked to help me put my shoe on outside the big-box appliance store. I said no
Algorithms reduce agency- they do it for you
Tiger woods finished the masters, all 72 holes
I’ve compartmentalized a lot of stuff in my life, it works for me. Take the good with the bad
In The New York Times focus group, They kept defining being a man as providing for your family, but I feel like my main role in our family is a supportive one I do think that I provide for them spiritually, and since that is most important of all maybe I am providing
https://whatsthematterwithme.org/wp-content/uploads/2022/04/return-to-the-radio.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-04-15 22:17:332022-04-15 22:17:35Return To The Radio
In this episode I got out of my house and saw a Lightning Bolt show, which was a big success. I used a ride service, ate a pre-show dinner, and hustled to the club, where they gave me a seat right next to the band.
Shoutouts: to the librarian who roped me into the compulsory ideas & cultural indoctrination book club!
I will survive my symbolic journey to Siberia as I read this book about prehistory somehow, the same book as everyone else
I went to see Lightning Bolt
Everyone in the family is out of town today
My wife asked me before she left, what was my menu plan? and I hadn’t thought about it
I made barbecued steak and spring onions yesterday- and some real hot salsa
I got a turkey sandwich, some beans, avocados, tortillas & cheese at the corner grocery. They have different varieties of beans down there.
Remember Hare Krishna’s at the airport? I guess it’s sad that the kids won’t have that
Social media is QVC interspersed with pictures of your friends
I went to the show
I used the Gogo Grandparent app which could just as easily be called Ride-O’s
It was around $30 round trip
I went to Low Bar , where I had a burger and a drink before the show
Brian Chippendale is hardcore drummer, as opposed to a jazz drummer
Lightning Bolt’s change of pace is between-song banter
The old ranting guy was drunk and ranting outside the club, he stood by the fire hydrant. I looked at him and realized we were the same age
Blue Hills by Michael Hurley was on as I put this together, it’s a new repress from Mississippi Records. he warbles a lot and the recording has many homespun touches.. you could see it as a bum trip, but I encourage thinking about with nostalgia. It’s very warm that way.
We had a Sunday itinerary- birthday party, BBQ and baseball practice. I am accessing my affinity group.
Welcome to What’s The Matter With Me Podcast Season 6, Episode 11 “Affinity Group Hang,” There’s lots of things going on. I’m getting out there, even further out than I was already.
West Elm couch backordered until August
The liquor store is out of things too
Shout outs to Kevin in Wisconsin
I’ve only got anecdotal info on a stem cell treatment for a friend of a friend who had pretty severe MS. He had the stem cell treatment and was feeling great for a while, but it’s been a few years and his condition has worsened.
I don’t usually do something unless my doctor recommends it, because there are so many different things that people recommend that it’s pretty hard to make heads or tails of it
Shout outs to Brook, and to Eric & Tracy who listened to the thing on a drive, they binged it
https://whatsthematterwithme.org/wp-content/uploads/2022/03/affinity-group-hang.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-25 19:05:162022-03-25 19:33:48Affinity Group Hang
Received: 3/14/2022 11:14 AM PDT Dear John, This IGRA result proves you have developed Tcell immunity to the COVID coronavirus. Great news, congratulations, Very best of health, (name removed)
Agnes Martin legal ID for KFJC- rules for legal identification
I saw a couple of people at the supermarket. She had one leg- He did not appear to be disabled- They were punks- They both had jean jackets- He had a black net back ballcap- She wore one Doc Marten- she drove and kept a folding wheelchair behind the driver’s seat- I regret not meeting them
I made the choriço, white beans, and kale- I used pinto beans & Goulart’s chorizo
https://whatsthematterwithme.org/wp-content/uploads/2022/03/wee-man-has-friends.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-09 22:40:282022-03-09 22:40:30Wee Man Has Friends
https://whatsthematterwithme.org/wp-content/uploads/2022/03/how-did-you-spend-your-presidents-day-vacation.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-01 01:27:482022-03-02 17:54:26How did you spend your President’s Day vacation?
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