Tag Archive for: disability


Welcome to “Can You Eat Blood?” the first episode after a break for a few weeks. I had trigeminal neuralgia face pain, so I took a a couple of weeks off. I think AI would say that these are bunch of unrelated thoughts.


  • Shout out to the poet Joe Imwalle who called me to thank me for sending a link to his linktree while at the same time insinuating (correctly or not) that almost no one listens to my podcast.
  • Joe played guitar in my high school band and now he’s a published poet
  • Shout out to Jeremiah Jahnson who gave us a shout out on KFJC, Saturday morning at 8:30
  • Shoutout to Hoppin Hot Sauce

Gray room

  • We went on a date at Yonsei Handrolls because the movie was too long to do otherwise

What To Do

  • When you have MS people are alwaays sending you scholarly articles like this one

Caramelized shallots

  • Chicken and pasta with caramelized shallots


  • Thanksgiving is for 14 this year
  • Thanksgiving menu

5% salt

  • I wrote the sauerkraut recipe for the school recipe book

I can breathe again

  • The espresso machine is back

No Swap

  • We’re taking a break from the Booze-Only Yankee Swap this year

Face on the fritz

  • My face is bothering me due to the storms in the atmosphere
  • Unfortunately I couldn’t eat dinner with my family
  • I had a scrambled egg on some rice so it’s not like I’m dying

Turkey Brain

  • A week away and the Thanksgiving meal took over my mind
  • I hope that I will be in the clear and so I can enjoy eating the meal and not be in fear
  • I’m put in the meat order after trying to put it in back in October and they were like, “We’ll do it next week.” I’m either super early or coming in in the nick of time

Cool hipster shoes

  • The guy at the mobility shoe store asked me what kind of shoes I want and I said I was a hipster and I was cool and he said so you want dress shoes?

Too Much Blood

  • Jan hasn’t been able to smell anything since he was 18
  • Nami drank Jan’s blood
  • But at least she didn’t drink her piss


  • Uniform Rejection of All writing submissions

Disability studies

Mysterious note

  • “Not just the bad stuff but the stuff I thought was really good”

Washed up

  • In a discussion of popular music John John told us Lady Gaga is washed up
doctors admit they don't want patients with disabilities cover
Doctors admit hey don’t want patients with disabilities. Plus, one-page term papers, specialty jeans. and more.

Welcome to What’s The Matter With Me? Podcast, “Doctors Admit They Don’t Want Patients With Disabilities”

In this episode we read about visiting the doctor in a wheelchair, how it affects the doctor-patient relationship, and ideas for appropriate reforms.

  • Thank you for tuning in- I admire you!
  • Shout outs to Cobra Verde for being down with the WTMWM? Listener Convention
  • Going to call the vivarium to set up a wild animal demonstration for the Listener Appreciation Party.

Silk Sonic

  • Silk Sonic is pop R&B music with synchronized dance moves
  • J Kenji Lopez-Alt “The Wok” cookbook weighs in at 4.7 lbs

Half Letter Press

protest grim reapers
Protest Grim Reapers

Doctors Admit They Don’t Want Patients With Disabilities

This week’s selfie:

Doctors Admit They Don't Want Patients With Disabilities selfie
Shirt: @newertopographics
oscars slap cover
Crowd work

After that Oscars slap, what to expect when you go into a comedy club as a disabled person. PLUS, bad food, hit my head and The Dawn Of Everything.

  • I always use the wrong finger on the security sign-in on my phone, like my fingerprints all match
  • Usually, I don’t want to download any apps
  • I had the worst Mexican food – we’ll read some bad reviews
  • Fell on my butt and hit my head in the parking lot, it was scary
  • Dawn of everything book club
  • Oscars slap discussion
episode cover

Wee Man Strikes A Chord

PLUS, disabled punks, Agnes Martin, choriço, Botox and The Red House (1947)

I’m feeling unmoored
  • Shout outs to Patrick who sent me a ted talk about chronic illness and using spoons as a metaphor to regulate energy- “Confronting the invisible” by Olivia Larner
  • Her talk centers around the idea that most people don’t see invisible disabilities
  • What matters is not how other people react to me, but how I present myself . I control what I can control. As ability changes, what you can control probably also changes
  • The frustration of becoming older and having your opinion be drowned out by a bunch of younger people’s opinions. Being disabled is similar in that your opinion is drowned out by more able bodied people’s
  • I heard Noam Chomsky’s podcast “Anarchism“- Noam Chomsky has a gravelly voice
  • Rockstacker & Condor: East San Jose characters. rockstacker.com is a thing
  • Olivia Lerner called chronic illness people “spoonies”
  • I like the old-school rapper Spoonie Gee
  • Spoonie Gee “Spoonin’ Rap“. I got that on twelve inch at Jerry’s Tecords in Pittsburg. RIP Jerry. went there in fall 2000, that was a dope record store. the worlds largest all vinyl record store. Jerry Weber died two weeks agar at 73
  • Used to play “Spoonin’ Rap” with Rick James “Cold Blooded” crunked out- those were the days!
  • Thinking about buying a case of Bordeaux and eating steaks every night because of this stupid ad
  • My stats showed and there are people listening to sequential episodes and on the one hand I’m like, don’t listen too close
  • I made easy food

I miss having barbecues and I’ve got to get over it. Cat meowing in the middle of the night. Children are like lice.


WTMWM? – S2, E9: Swimming

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice.  If you need medical advice, ask your healthcare provider.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org


Episode 8 Recap

Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting.


Shoutouts to Eric who told me he’d been listening to my pod.  Eric lives in Sacramento so he was digging the Sacramento episode.  Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy.

Fall Down Seven Times, Stand Up Eight

Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to “it’s not whether you win or lose, but how you play the game.” It’s different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.

Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn’t search for things on the internet. Certainly sometimes it’s plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record.


On John John’s 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn’t be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.

When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. “I wanted to get down on the ground and then go into the pool,” I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn’t feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.  

When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.

I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment.

Spread The Word

Check out the Whats The Matter With Me? podcast on Facebook, please review it and like it, hate it, whatever — help me get the word out.  You can Contact me here.

Enter The Dragon

In this episode, I tell all about the last scene in Enter the Dragon and how it connects to my experience going to Lollapalooza in 1994, the Wahl’s protocol, and the upcoming Season Finale in Episode 33.  Inspired by playing Episode 1 in the last episode, I compare where I am then and now.

Episode 31 Recap

Last episode, Yoko was here. She in Tokyo now, but things continue to happen to me, so let’s talk about them. I fell out of the shower. I saw my MS doctor and we discussed my recovery, and I told him the blanket analogy about how MS is like being trapped under a blanket that can be very heavy at times.  From the never-before-heard ancient history, I played Episode 1, about a visit to the occupational therapist, challenges with hot sauce manufacturing, and the desire to share my disabled experience both good and bad.  I wonder aloud, should I be on disability? I told the blanket analogy to my occupational therapist.  I resolve to try and make something out of crisis.

Enter The 36 Echo Chambers

The echo chamber of social media is like the final scene of the great Bruce Lee movie Enter the Dragon where he fights Han with all the mirrors.
When I went to Lollapalooza in 1994 before Smashing Pumpkins came out they played this scene.
I went to Lollapalooza see the Beastie Boys, and I thought Parliament was especially memorable because they had a guy dressed as a baby. Bootsy Collins was very far out.  Cypress Hills was there, and Guided By Voices too, but I wasn’t hip enough to be up on that yet.  I was fifteen, and I remember being confused.

Wahl’s Protocol

Listeners wrote in on the website and the Facebook page to ask if I knew about Dr. Terry Wahl’s protocol, which is a dietary approach to fighting multiple sclerosis.
One of the few things that seems to really affect how I am feeling is what I’m eating. Because of this, I try to cook as much as I can myself using minimally processed ingredients. This way I know more about what is going in to my body, so I can easily make changes and modify my approach.

Episode 33 Will Be the Season 1 Finale

The final episode of the season will be the next episode, Episode 33. I’m going to take a pause for a long-overdue upgrade to my computer and audio equipment.  In advance of the Season 2 Premiere, I’m going to put season 1 back online.  I’m already speaking to different people and making efforts to expand my network, so I can bring new voices and perspectives to the podcast in Season 2.  Expanding my vision will increase my podcast’s Disability Consciousness, grow understanding and make our community stronger.

New Growth

Last week the landscaper was here and we planted new plants in the garden, cut some old ones back, and retired some others.  New arrivals include red snapdragon, mexican sage.  Everything is looking great in the garden and getting ready for Spring.

Differences from Then to Now

Listening to last episode, I was struck by how different things were in Episode 1 in comparison to the present time.  In Episode 1, I wonder about getting disability.  I applied for disability and received it in Episode 20, five months later.  I got my ankle-foot orthotic (AFO) brace in episode 1, but it took until Episode 8, two months later, before I could wear it without too much pain.  Even though it still hurts, now I wear it every day.  I’m looking into getting a scooter, so I can increase my range and go farther.  The best difference is that I feel better and more positive.

Stay Tuned

Tune in to Episode 33 for a look back on Season 1 and how we’ll get ready for Season 2.

Doctor Visit

In this episode my wife’s mom was visiting, I fall out of the shower, I visit the my doctor at the Stanford multiple sclerosis clinic, and play Episode 1 which is a really validating experience, because many of the themes still resonate.

Episode 30 Recap

Last episode, I exhibited at the Winter Fancy Food Show which was a big step forward for my business. Fulfillment, sales and following up arer ongoing. Getting it together was a lot of work and I experienced some cognitive slowness as a result, and in the episode I told a little story about that. I played Episode 2 in which I shared my intention to get better.

Feeling Better

My wife’s mom Yoko just flew back to Tokyo after staying with us here in San Jose for a couple weeks, and while she was here she told me that I looked better. She said that I seemed sharper and more with it and better in my eyes. I guess I did get better, because I feel better, like I am recovering and getting better. Thanks for listening to my podcast, because it helps and supports me.

I Fell

I fell out of the shower covered in soap. I dropped the soapy puff, and some soap got on the ground and flew out of the shower. Somehow, I emerged unscathed.

Doctor Appointment

My doctor said that my current MS medication was probably working OK enough not to change it, that my past medication probably hadn’t worked, which led me to experience greater symptoms and lose functionality. He said he thought that my disease activity could be too microscopic to detect, and that was how nothing showed up on my MRI.

Good To Be Young

He told me that it is good I am young, because I had time to heal. I told him the blanket analogy that I use to understand MS: that it is like being under a blanket with no edges, impossible to escape. Sometimes heavy and other times lighter, you are always under the blanket.

Episode 1

Without further ado, it’s time to go back to the beginning: Episode 1.  Only a few people ever got this, over e-mail.  In this episode, it’s the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision.


It’s the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.

Occupational Therapist Julie

I went to Stanford to visit the occupational therapist. We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment. I got on a tangent and had to flush the segment down the toilet. I start over again.
I ask Julie if I should be on disability. She showed me how it could help me. I got approved for disability in Episode 20 and I went through further feelings about it in Episode 21. Improbably, I told her the blanket analogy! I told her about how I believe in trying.

Going for it

It was great to hear so many familiar themes: the struggle, endeavoring to try, and cultivating positive healing intentions. I’m very happy with the way things are going.