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.


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.


Pain / Withdrawal Cycle

Swallowing Evaluation AKA Diagnostic Fluoroscopy

Had pain and went to the Nurse Practitioner ..

Medication (mis-)management traps me in the the pain & withdrawal cycle. Read more for my visit to the nurse practicioner, diagnostic fluoroscopy, postlude with John John & more.

Read more
project euphonia cover

Google’s Project Euphonia helps disabled people communicate

Five weeks of mayhem, pain and drug withdrawal

ALSO, Five Weeks of Mayhem, Pain &Drug Withdrawal

(Picking up the pieces)

Read more
Cover image
“Face hurts … Tomorrow is Koko’s 3rd Birthday”

Man!– I have trigeminal neuralgia, my face hurts. Ow! The kids had to go away, it hurt so bad I couldn’t handle it and I freaked out. I’ve been staring at plants in the garden. I grilled chicken for the whole family, had dinner and couldn’t eat it, because my face hurt. Tomorrow is Koko’s third birthday.

Read more

In this episode, I participate in Walk MS as a walker and also as the MC. Later, I post to Reddit and it goes pretty well, even though I use the wrong word.

Show notes
Read more
Birthday boy

Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 7: It’s My 40th Birthday

Coming up in this episode: pain and anxiety, brain damage, the beauty of nature. Hanging out in the backyard, it’s my 40th birthday. I’m thankful to be here processing my emotions and symptoms. Come hang out with me.

Read more

Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation

In which: I deal with social isolation, get interrupted by a real estate broker, I’m uninspiring, and I come out against disability porn. I realize I need a scooter again, and the National MS Society support will help.

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. So I made the What’s The Matter With Me? Podcast to share what I’m going through.

What’s The Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcasts or from, or wherever you get it. I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

Interrupted by a phonecall

You’re listening to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation. I have been feeling kind of isolated today, so I’m going to hit the mic but first, shout outs to Pamela, Nat, and Rocky.

(phone ringing)

Oh man, somebody’s calling me on the phone. I’m pretty stoked about that, because like I said, I’m feeling isolated. I’ll be right back. —

Man, I don’t know whether to feel more or less isolated. Someone called me, yes, but it was a real estate agent from across the country, from the other side of the country. This is a thing that’s been happening to me, and I’m glad to tell this story here, because it gives me something to focus on rather than my own isolation. People call me, okay, real estate agents from across the country, fools, they’re all fools, because I don’t own any real estate on the other side of the country, but somehow they got it on some listing, they got my name and phone number somehow, and they’re like, “We’re calling you about the property.” I’ve already looked it up, it’s been going on for months.

So, periodically someone from across the country, from this city will call me and be like, “Are you still selling the property at wherever?” And I’m like, “No, it’s not my property. I’m not selling it, and can you take me off the list please?” And they’re like, “Well, sorry, I can’t. Your name’s just on there.”

So anyway, I’ve been getting calls about this hot property condo apartment unit or something, I have nothing to do with it. So should I feel more or less isolated? I don’t really know, but I’m kind of thankful, I guess.

I feel more, I mean let’s be real, you should feel more isolated if the only people who call you are real estate brokers, and just to clarify, I don’t own any property over on the other side of the country, but also, I don’t own any property on this side of the country. Just to be clear, there’s no property. I mean, I have personal property, my clothes, right? And personal effects, I guess is really all I can claim.

So just to recapitulate, I am feeling social isolation, the people who call me are real estate brokers trying to sell property that I don’t have.

Ableism, Disability Porn and the Right To Be Uninspiring

This kind of stems out of last episode. I said right off the top that I was going to exercise my right to be uninspiring, and some people thought that was funny, and just to give some context to that remark, it’s really just a remark, right?

But disabled people are often a focus for other people’s projection, and we’re trotted out to be inspiring. “Isn’t it inspiring that they attempt to do something?” I mean, the bar is insultingly low. “Isn’t it inspiring that they look at us and smile? Oh, they smile just like us.”

It’s kind of like Us Weekly in a way, I guess. But the thing is, it’s just like celebrities in Us Weekly are annoyed by the paparazzi, I’m annoyed by other people projecting their fantasy about how horrible it must be to be me, and that it’s so inspiring that despite how horrible it is to be me, that I try, and I try and be whatever I am, like every other person.

So I’m uninspiring, right? That’s what I meant, exercise my right to uninspire, and then this is one of those episodes where I just freestyle about how bummed out I am, and so that really ties in with the last episode, the right to be uninspiring.

That’s what they call disability porn, where you’re watching and you’re like, “Oh yeah, bless their hearts.” It’s kind of condescending. It’s complicated at the very least.

Stress at work

I haven’t been on the radio recently, I haven’t been down to KFJC. I’ve been trying to do Hoppin Hot Sauce, I’ve been recording Pepper Show and focusing on that, and I’m making a new size of Hoppin Hot Sauce. There’s a new production that’s happening at the end of the month. So it’s kind of taken all my energy.

I need a scooter

That’s only half of this story, the other half is that Foothill College is on a hill, that I have to take elevators, and go on ramps, and it’s quite a jaunt. And I’ve been talking for the past couple of episodes about how I need to figure out a scooter, well, Foothill College is a place where I can really use a scooter, because you get there, you take a pretty long ramp to an elevator, then the elevator takes you up to the third floor, you walk part way across the quad, and go up another elevator, and go halfway back the way you already came, and go around, and then you get to the Foothill College radio station, get to KFJC.

So it’s kind of zigging and zagging up and down, a lot of elevation, and then I get on the air and I’m on the radio for four hours. It’s a lot of standing, moving, walking around a tight space. So it has its own stress, but the walk to and from is killing me. I need to get that scooter situation solved, so I can get back on the air, because in previous episodes I figured out, “Hey, KFJC is like my support group.” They don’t have MS, but they have another sickness: they care about music and broadcasting, and I care about that too.

I like underground music, and music that you can’t hear anywhere else, and that’s all what KFJC does, and the people there are like encyclopedias, it’s crazy. They know everything about everything. They’re just experts of everything. that may be a bit much, but they know a lot about records and obscure music for sure.

I’ve got to get back on KFJC. That is going to relieve some isolation. I’m also feeling a lot of stress because I’m producing a new size of Hoppin Hot Sauce, and I’m making a second production, and production time is stressful. Every day I have a timeline, it’s ticking down. At the end of the month I’m going to get pallets of hot sauce, they’re going to live, and they’re going to have labels, and it’s going to start again. Hoppin Hot Sauce is back, we’re strong. It’s a big win that I have taken my business through one production cycle, I’ve sailed through that, I’m getting to the end of my product, and I’m going to order more, and I’m going to order something new. So that’s really exciting, but it’s also kind of stressful, and I’m needing support, and KFJC is where I would get it, I think the best place for me. But I don’t have a scooter.

The National MS Society will help me find the support I need

I’m going to go on Friday, there is support at the National MS Society office here in the South Bay, there is support available. I can go to the support group and talk to them about scooters. Maybe I can get a head start. I’m going to be on the Silicon Valley Walk MS in San Jose on May 4th, I’m going to be MCing that from 8 AM to noon, and I was going to put off my purchase until then, but I think I need to get this sorted. I need to relieve this isolation.

This was therapeutic

Man, it’s a really good thing when I can record the What’s The Matter With Me? Podcast and it can become its own therapy, and I can figure out what’s going on is: I’m freaking out about production, I’m not that isolated, and I have some good options. I have a strong family, but I can reach out to the National MS Society for support, and I can reach out to my hometown homies, KFJC, my support group of people who likes the same stupid stuff I do: music. I can’t wait. This is good. And if it doesn’t work, I’ll be back here, because this was useful. I can talk about my problems and figure out what they were.

Thank you for listening to the What’s The Matter With Me? Podcast. You know you can find all the past episodes, there’s like over 50 of them, on and Apple Podcasts, and whatever app you use, just use it. Find the What’s The Matter With Me? Podcast.

Hoppin Hot Sauce is the best sauce in the world

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.


It’s a movement, Hoppin Hot Sauce is a movement, check it out

Thank you

Thank you for listening to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation.


Welcome to the What’s The Matter With Me? Podcast: Season 3, Episode 5: Matrix of Domination

Coming up, I’m afraid to get a scooter because I fear my own disability, I get ready to emcee for Walk MS, and try to understand my place in society vis a vis Race, Gender, Class, and Ability.

My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster. I have multiple sclerosis, so I make this podcast to share what I’m going through. What’s The Matter With Me? Is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcasts, from, or wherever you get it. I’m not a medical professional, don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

Shoutouts & Recap

I always have to do that. I always have to tell you call your doctor. Anyway, shout outs to Mary and David. Shout outs to people who contacted me saying, “That was a powerful episode, I almost cried.” I understand that, I have almost cried before. Please, though– don’t cry to this. That’s right, email me using the contact form, I’ll give you a shout out.

Recap, last episode I was talking about Sacramento, the scooter and 2666 and some new music I made.

I almost don’t have a lot to say. I mean a lot has happened in the last few weeks.


I decided to get a scooter last episode. I went to the scooter store, I tried on a few scooters, and I kind of was like, “I’m not sure.” I left, and then I just got less and less sure. Something is coming up in the next month or so, going to allow me to decide/know more about scooters. I really don’t know much right now. I just kind of have the salesman’s word. I wish I knew more ’cause buying a scooter, some people pointed out to me, I’m not going to get to do twice. I’ve got to get it right. That kind of freaks me out, and it’s making it so I can’t pull the trigger. I’m like, “Oh it’s so important. I have to get it right.”

I’m the Walk MS emcee

In a month, I’m going to be an emcee, I’m going to be the emcee. I mean forget about an emcee, I’m the emcee. My buddy Charles is coming with me. Come on, Charles is riding my coat tails, let me be honest. Got to take a break there before I bag on Charles too hard though. Anyway, we’re going to do the Silicon Valley Walk MS. That’s happening on May fourth, one day before Cinco de Mayo, so it’s like the mellowest day ever in San Jose, because it’s going to pop off after that, right? Cinco de Mayo. Anyway, that’s neither here nor there, but I’m going to be emceeing the Walk MS on Sunday May fourth in San Jose right next to the arena in the park. My idea about that is that I’ll see a lot of people with MS, and I’ll get a lot of ideas about what kind of scooter to get.

Fear of my own disability

I kind of think it’s silly to go out and drop it’s almost like 2000 bucks on a scooter, and not kind of see it all in motion and get feedback from people. I also am like, “Am I just being a chicken?” Maybe, maybe I am scared of getting a scooter. I’m scared that I’ll become a vegetable, and you can bury me in the ground. I don’t know, it’s fear of death I think, I guess, I don’t know, fear of something. I have a lot of fear. I’m afraid to get a scooter, it means I’ll be something. There’s probably something to that. My fear is that I’ll get a scooter and in so doing, I’ll like turn into something awful, which is really I think probably myself being afraid of my own disability, and beating myself up about it. I should just accept reality and realize that a scooter is going to really help me.

Interesting, this kind of leads into the next thing I wanted to talk about. I thought about the lens of gender, race and class, and about ableism. People talk about that, “Oh someone is discriminating against another person based on their level of ability”, and that is definitely a thing I can tell you as a person with a declining ability to walk for example, even though all that’s declined is my ability to go on a long walk, people treat me like I’m somehow deficient, which I guess I am if we’re in a walkathon. I think I will make a great emcee for the MS walk! Talk about it! I’m excited for that. I think it’s going to be positive and powerful and awesome. I think anytime you get a group of people together.

Race, Gender, and Class

Well then I started thinking about that, race, gender and class, and I started thinking about ability. It brought me to something. My therapist went to Austria to film The Special Olympics last year. The spring of last year’s Special Olympics was in Vienna. We talked about the desserts of Austria, even though I don’t really know anything about it, I know they’re supposed to have really good dessert. I kind of was like lusting after it. I was like, “Oh you can eat dessert when you go there.” If I go to Austria, I’m going to dessert. Funny, I use swipe assistant type typing, and it thought I said deserts, the deserts of Austria. I wonder about if there are deserts in Austria, maybe I’ll get back to you. All right, I checked that out. There are not deserts in Austria, there’s the River Danube and a bunch of alps, that’s what’s going on, mountains and rivers.

When my therapist came back from Austria, he said he had a realization that disability affects all people regardless of sex, class or race. Disability is complicated because I’m having trouble with disability, and I’m an American white male. I have definitely a certain amount of privilege that goes along with the experience of being disabled by multiple sclerosis. What can I do about that? I went searching about race, class, and gender, thinking it was going to help me. This is from the University of Albany’s website talking about race, gender and class analysis. It says, “It invites us to distinguish between thinking comparatively and thinking relationally. People think comparatively when they learn about experiences other than their own, and begin comparing and contrasting those experiences.”

“It’s a step beyond centering one’s own thinking on a single group, typically your own. Relational thinking involves seeing the inner relationships among diverse group experiences. When you think relationally, you see the social structures that simultaneously generate unique group histories, and link them together in society.” Everyone has a race. Everyone has a gender. Everyone has a class. We can compare our position in that lens. We all have those three things. We’re all at a different level. Also, we all have ability, that’s what I realized. We all have a level of ability. I had to turn to this kind of analysis, thinking relationally: “you untangle the working of social systems that shape the experiences of different people and groups, and you move beyond just comparing gender oppression with race oppression, or the oppression of gays and lesbians with other racial groups.”

“When you recognize systems of power that mark different groups’ experiences, you possess the conceptual apparatus to think about changing the system, not just documenting the effects of the system on people.” Now that’s interesting, it’s like a way to analyze this complex machine. What is that term they used? I love it: “Because of their simultaneity in people’s lives, we advocate using the approach of a matrix of domination to analyze race, class and gender as different but inter related axes of social structure.” We all can plot ourselves along these different axes. It creates like a different social mechanism, social creature in each person.


Wow, that was hard. I’m not going to sugar coat it. You guys are geniuses if you listened to all that. Anyway, that’s true. I mean we’re all kind of trapped in a matrix domination.

You can change culture

Hey, culture changes. It’s not you’re trapped in glass. It’s true, you can change culture. Back in episode 13, 14 and 15, way back, I had a lot of problems with people parking in the handicap space. I’m trying to drop my kids off and people would park there using it as a five minute space or something. I had a lot of problems, but I talked to people, I got help in the organization and I kept at it. It kept showing up in episode after episode, I’d try and drop my kid off, someone’s in the space using it as a convenience. For me, it’s like I need access. I stuck with it.

I haven’t had anyone park in the space for a long time. The one time it did happen, I saw another parent who I had been going to the center with for a long time stop by and tell them, “Hey, this isn’t for people to just park here. This is the handicap space.” Someone backed me up. The culture changed, that is a cool thing you can do that. Stick with it, we can change culture.

Thank you for listening

Thank you for listening to What’s The Matter With Me? Podcast, season three episode five: Matrix of Domination. Find other episodes at Apple Podcasts, or wherever you get your podcasts. The worldwide universal sponsor Hoppin Hot Sauce is a movement. (singing). Hoppin Hot Sauce is a movement, get with it. Thank you for listening to the What’s The Matter With Me? Podcast season three, episode five: Matrix of Domination.


Welcome to the What’s the Matter With Me? Podcast, Season 3, Episode 4, Mobility Assistance, in which we go on a trip to Sacramento where I finally admit to myself that I need a scooter, plus fictional characters with MS. I made some new tunes and more. Stay tuned. Check it out.

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, so I made this podcast to share what I’m going through.

What’s the Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcasts, from, or wherever you get it.

I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

Shout outs: first of all, come on. What’s up? I’m nothing without a shout out. I’m a shout out machine. You put a quarter in me, I’m just like, “Shout out, shout out, shout out.” Shout outs to Patrick, and shout outs to Emma. Give me an email– Contact me on the– Give Me An Email using the contact form, and I’ll give you a shout out.

All right, recap. Recap, recapitulate, recapture and wreak havoc. Last episode, I’ve received my MS medicine by infusion. There was a reiki lady. She gave me reiki, and check it out: Season 3, Episode 3, Infusion. It’s up on

I went to Sacramento and horned in on my cousin’s life for four days. I dominated his house and mind, I’m sure. I have profound apologies, but now that I have MS, I’m working up to a trek. I can’t really travel, you know, so I’m working up to it. I want to go to the Monolithic Rock churches of Ethiopia, and I want to feed raw meat to hyenas on the end of a stick. But for right now, I go to Sacramento. It’s just two or three hours away by car. I do a lot of weird stuff. In addition to invading my cousin’s life, I visited the capitol building. I met with my assembly member, Ash Kalra, representing the 27th California Assembly District, where we live here in San Jose. We sat in his office with John John and Koko, and I like to do this where … I’m not really into politics or any … But I like to show kids things. I wanted to show them that politics is a real thing, and the government is real. Real people are involved. It was cool.

So we went in to his office, Ash Kalra’s office, and we took a picture with him. We talked with the kids about where they went to school. He was cool, and I was glad to show that to the kids. The capitol building politics is as strange as you think it is. It’s very strange. Hopefully the kids picked up on that, and they won’t become politicians, hopefully. But you know, it’s probably the other way … Everything goes wrong when you’re a parent.

We ate at Frank Fats, a Chinese restaurant, an old Chinese restaurant, in Sacramento, but it’s like a political, rubbing shoulders kind of restaurant nowadays. You can get an awesome martini, and fried wontons, weird stuff.

We ate also at Juno’s Kitchen and Deli. It’s like a casual deli, but they bake the bread in the house, and it’s kind of more refined than you expect it to be. But it’s good for the family, and it’s cool. We go there. It feels like a gem, kind of thing. They like Hoppin Hot Sauce there, and they have the bottle. So when I walked in there, they were like, “John!” You know, and I was like, “Yeah, I’m on the bottle,” you know what I mean? My name is known. Juno’s, Juno’s Café and Deli, check it out in Sacramento.

The tourist area of Sacramento has the worst name. It’s called Old Sac. I mean, for real. The central tourist area, they’re like, “Welcome to Old Sac.” You call up your friends. You’re like, “Hey, guys, let’s go hang out in Old Sac.”

McKinley Park is like this giant green space park with a duck pond in the middle, and a kids playground, a really big one. Kids wanted to go there every day. We went to Sutter’s Fort. Went to the Crocker Art Museum. It’s a cool, modern museum built around an 1870s mansion, and it has a big collection of plates, African headrests, and California works on paper, old pictures, ceramics. It’s like a mix of things. The mix of architecture with this mansion, 1870s, big mansion, beautiful flooring, parquet floors, other kinds of floor. It’s pretty amazing. And then a modern museum kind of built around it. But I had mobility issues.

After I walk for like half an hour, it starts to get hard to walk, and the pressure exerted by my AFO leg brace on my ankle and the top of my foot is too much after a while. It’s carbon fiber on bone, and eventually I can barely walk. I realize my AFO allows me to walk, but I can’t go take a walk. So I’m like hobbling through the 19th century mansion in pain, and I’m unable to move my eyes from the floor, or I’ll risk falling. And I decide, that’s when I finally capitulated. I’m like, “I’m getting a scooter.” And I told Nami, and of course, she’s very supportive.

A few years ago, I saw a rehab therapist who advised me to get a folding, portable scooter. She asked me, “Imagine a party at the end of a long path, far from the car.” Did I want to spend my energy on the path, getting there, or at the party itself? It was kind of like an easy question, but I was afraid of the answer. And I said to myself, like, “Oh, I’ll be fine. I can make it.” But I’ve gone to enough events with Hoppin Hot Sauce, or family events, school events, had enough trouble maneuvering, almost falling over, endless treks through 19th century manors. It’s true. My brace helps me walk, but not to go on a walk.

Like the AFO before it, the scooter is a choice born out of necessity that effects my appearance to the outside world, and it requires me to let go of a bit of vanity, not by my own choice. And just to write that out, to say this feels healthy. It feels good, and valuable to accept reality. Acceptance, move onward.

What about the way characters with multiple sclerosis are represented in the culture? I’ve been reading this book. I’ve been reading 2666 by Roberto Bolano. It’s a novel I selected. I picked it out because his earlier book, The Savage Detectives, was compared to Jack Kerouac, and as a kid, I always loved that. And that’s the reason why I didn’t read Savage Detectives. I was like, “I’m not going to read that. It’s kids stuff. I used to like Jack Kerouac when I was a kid, kid stuff.” But then I saw this huge book in the bookstore, 2666, at the used bookstore. And it was in good condition, hardcover, so I was like, “I’ve got to get that.” It was a good price, and I was like, “That guy was the guy who was compared to Jack Kerouac.”

Now, there’s this huge book. He’s a Chilean guy, died in 2003 at the age of 50. At the bookstore, I skimmed a few pages, and it was like one of these manifold themed books unfolding all different kind of writing. It was like Borges and Murakami. It was like a serious novel. It was a big and powerful book, with lots of different interesting stuff inside, revolving around an elusive, fictitious, elusive German author, and an unsolved and ongoing murders of women in Santa Teresa in Mexico, based on Ciudad Juarez. And I was like, “This is cool. This is weird and cool.”

In the book, a group of scholars are searching for this German author, and one of them has MS, and he’s in a wheelchair. And he goes on a trip to London from Turin. And it just says, “He had to rest after.” And I was like, “Oh, it’s fatigue. He has MS fatigue.” And so it’s like depictions of MS always interest me. I hop all over them, and read into them, and interpret them, and I’m hoping MS will get the same nuanced treatment as everything else in the book, with the same level of almost crazy care.

Here, I’m going to read another bit, where the character with MS decides not to go to Mexico.

“At the last minute, Morini decided not to travel. His ill health, he said, made it impossible. Marcel Schwob, whose health was equally fragile, had set off in 1901 on a more difficult trip to visit Stevenson’s grave on an island in the Pacific. Schwob’s trip lasted many days, first on La Ville de la Ciotat, then on the Polynesien, then on the Manapouri.

“In January 1902, he fell ill with pneumonia, and nearly died. Schwob was traveling with his Chinese manservant, Ting, who got seasick at the drop of a hat. Or maybe he got seasick only if the sea was rough. In any case, the trip was plagued by rough seas and seasickness. At one point, Schwob in bed in his stateroom, and convinced he was on the verge of death, felt someone lie down beside him. When he turned to see who the intruder was, he discovered his Oriental servant, his skin as green as grass. Only then did he realize what kind of venture he had embarked on.

“When he got to Samoa after many hardships, he didn’t visit Stevenson’s grave, partly because he was too sick, and partly because what’s the point of visiting the grave of someone who hasn’t died, Stevenson, and Schwob owed this simple revelation to his trip, lived inside him.

“Morini, who admired Schwob, or more precisely, felt a great fondness for him, thought at first that his trip to Senora could be a kind of lesser homage to the French writer, and also to the English writer whose grave the French writer had gone to visit. But when he got back to Turin, he saw that travel was beyond him, so he called his friends and lied, saying that the doctor had strictly forbidden anything of the kind. Pelletier and Espinoza accepted his explanation, and promised they would call regularly to keep him posted on the search they were undertaking, the definitive search this time.

“Norton felt somehow insulted by Morini’s decision not to go with them. They didn’t call each other again. Morini might have called Norton, but before his friends set off in their search for Archimboldi, he in his own way, like Schwob in Samoa, had already begun a voyage, a voyage that would end, not at the grave of a brave man, but in a kind of resignation, what might be called a new experience, since this wasn’t resignation in any ordinary sense of the world, or even patience, or conformity. But rather, a state of meekness, a refined and incomprehensible humility that made him cry for no reason, and in which his own image, what Morini saw as Morini, gradually and helplessly dissolved, like a river that stops being a river, or a tree that burns on the horizon, not knowing that it’s burning.”

Something cool about that, I like that, “A tree on the horizon on fire that doesn’t know that it’s burning.” That’s kind of how it is, a meek, dissolution, MS. I think there’s something … This guy is a perceptive author. There is something he knows, pretty cool.

There’s new music. I made new music. It’s pretty strange. I make it all with my left hand, because of my right hand doesn’t work. It’s kind of this weird, synthetic jazz process. So there’s a new tune called Suda. You can hear it,

Thanks for listening to Season 3, Episode 4 of the What’s the Matter With Me? podcast, Mobility Assistance. Find other episodes at Apple Podcasts,, or wherever you get your podcasts. The worldwide universal sponsor, Hoppin Hot Sauce, is a movement.

“Hoppin Hot Sauce, it’s the best hot sauce! Hoppin Hot Sauce, it’s the best sauce in the world!”

Hoppin Hot Sauce is a movement. Get with it,

Thank you for listening to the What’s the Matter With Me? podcast, Season 3, Episode 4, Mobility Assistance, in the books.


In this episode we’ll go through getting an infusion

infusion noun
the slow injection of a substance into a vein or tissue.

Google Dictionary

I was due for my Rituxan infusion, my primary multiple sclerosis (MS) medication, on January 4th.  I called a week ahead. I needed to get bloodwork at a lab and approval from the insurance company.  The bloodwork was no problem but the approvals were difficult. I had to be persistent. Before I knew it, I was already a month and a half late.

I worried that I wasnt getting the medication i needed.  I fell a few times. I was living in a fog.

I had the infusion yesterday.  I feel about the same.


JOHN HOPPIN: Welcome to the What’s The Matter With Me? Podcast, season three, episode three, Infusion.

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, so I made this podcast to share what I’m going through.

What’s The Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcast, from, or wherever you get it.

I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

All right. Season three, episode three. In this episode, we’ll go through getting an infusion, getting medication by infusion. Let me check this out. What’s it say? Infusion is a medicinal term. The slow injection of a substance into a vein or tissue. So, that happened to me the other day. We’ll talk about it, but first, I’ve got to give shout outs.

Shout outs to Rocky. Always to Rocky like I said I would. And shout outs to [Nomi 00:02:00] for going to MS Breakthroughs with me. I bet it was weird. And to Eric and Tracy for letting us invade their house. We went to Sacramento last week. You’ll hear about it in an upcoming episode, so stay tuned.

Infusion. Okay. I was due for, I take Rituxan. It’s my primary MS medication. I take it by infusion, and I was due for it on January 4th. I called about a week ahead, and I had to get blood work at the lab, and approval from the insurance company. Blood work is no problem. You just head down to the lab, they draw your blood, whatever. Chop chop. All done. But the approval was difficult, and I had to be persistent, and before I knew it, I was a month and a half late.

You know, I’m supposed to have this every six months. You know. I was going to have the infusion here. Maybe there. But the bottom line is, I’m late now. I’m starting to worry. You know? And be like, yo, I’m supposed to have this thing every six months, now, it’s seven months. I’m worried about I wasn’t getting the medication I needed. I fell a few times. I had fog, like in my brain, in the afternoon. I couldn’t think of anything. Or in the morning, or really, at any time. I had no energy. I felt like I was totally fogged up. And I’m like, “Is it because my medication is late?” You know. It’s impossible to tell.

But finally, yesterday, I had Rituxan. My wife drove me. It’s in Palo Alto, so it takes like 40 minutes, 45, to get there in the morning. My wife drove me there. She worked remotely from the room where I was getting infused.

It’s a long one. You’re hooked up to the IV machine for over four hours. They give you precursors. I’ll tell you about it. It’s kind of crazy. It’s similar to traveling in that you’re just inactive, but totally drained afterward.

I sat in a big chair. They gave me steroids and Benadryl for the precursor. That’s to reduce chances of infection. They give you all this stuff, but the effect from my end is, like, I’m all pumped up, and also, I got knocked out. So you feel this oncoming rush of steroids. You fill like you can chew through the table in front of you, but then the air gets all thick and gooey. Things get weird, and the medicines like fight each other. It’s a really odd feeling.

It feels cold in your vein. You can feel it at the injection site. They’re pumping you full of this stuff, especially the precursors where they just kind of inject the whole thing at once. Infusion is kind of a slow process, but when they start it off, they give you these big vials of Benadryl and Solu-Medrol, and it makes it cold in your arm. You can feel it. Cold in my veins.

The nurse put an instant heat pack over the IV, and it was warm, and it felt good. I had seen her before. She was from Honduras. She had nice braids. They were kind of intricately woven, but kind of sculptural in the way they piled on top of her head.

I was hooked up to the bag dangling from the infusion pump to go for about four hours. My wife worked from a small chair with one of the bedside tables pulled up as a desk. She had her earphones in. She was on a call across from me, and I kind of fell asleep, I guess.

I woke up at some point. It was the afternoon, a few hours later. My wife had picked up some food from a stir fry place, some meat, vegetable and pickles over rice with garnishes like caramelized onions and sliced hot peppers.

The nurse came in every few minutes to check my blood pressure and temperature, or to check the infusion machine was still dripping, chugging along.

A volunteer reiki master appeared, and she asked me if I wanted a reiki session. I was scared, but I also thought it could be awesome. So I put down my food and my phone. She said, “You don’t have to.” And I was like, “No. Forget it. I’ll put this stuff down. Let’s focus on this.” She came behind me and moved her hands lightly over my shoulders, my head, and to my shoulders again. It was very relaxing and made a welcome contrast to the circumstances.

Usually, I’m pretty skeptical about things like that, but I’ll try to be more open-minded in the future or, at least, that’s what I was like, “Should I get this?” I should try and be more open-minded. It was pretty good.

The nurse came by again to check on the IV line a few times. Finally, she told me I was getting close. Nomi was down the hall interviewing someone. She does crazy work. She could do anything anywhere, I think. The nurse removed the IV and wrapped my arm in a purple bandage. I was ready to go.

Nomi came back. “Arrivederci,” I said to nobody in particular. We drove home to San Jose. Took about an hour from Stanford, Palo Alto. We finished up at rush hour time. I was glad to have Nomi with me for all the help and support, driving me back home. It was amazing. The whole process is taxing. It can be hard driving around, and to have some support is really valuable.

So that’s it. I really got hooked up to this machine. They infused me for a long time. So, that’s kind of it. I want to tell you how it goes. You’re kind of like pumped up. They give you lots of drugs. It’s weird. You pass out. You wake up. Then it takes forever, and then you feel drained at the end. That’s infusion.

So, thanks for listening to season three, episode three of the What’s The Matter With Me? Podcast. Find other episodes at, iTunes, or wherever you get your podcasts.

Check out more of this cool music that I make on J-O-H-N dash H-O-P-P-I-N. The worldwide universal sponsor Hoppin Hot Sauce, it’s a movement. Makes every plate taste great.

Hoppin Hot Sauce. It’s the best hot sauce. Hoppin Hot Sauce. It’s the best sauce in the world. The world, I’m telling you.

Check it out.

Season three, episode three in the books. Thank you for listening to the What’s The Matter With Me? Podcast.


Attending the MS Breakthroughs Conference

Over the weekend, I attended the MS Breakthroughs event put on by the National MS Society. The keynote speaker was Jeffrey Dunn, director of the Stanford MS Center. The event promised to inform about the current-day MS Breakthroughs as well as the future of MS Research.

It began with a free breakfast. The guy next to me dug in. I’d already eaten. I heard the danishes were good.

Award Ceremony

Someone who raised $250,00, another raised $100,000 & wrote pieces of legislation.. a team of 4 people raised $1.1m. A cool guy who runs a lot of local support groups received an award.


Volunteer of the year came from Alameda. I used to work in Alameda supervising down’s syndrome adults at their jobs collecting carts for the supermarket.
You can’t drive 26 in Alameda without the authorities checking you out! It’s locked down tight in Alameda.

Grouping and Splitting

Dr. Dunn started off with some history of the MS Society, and its important role fostering collaboration, explaining the scientific paradigm of grouping and splitting.

Things start far apart and come together, collaborate, and become normalized, then specialization occurs. Repeat process forever.

Biology is complicated

Biology is complicated – the result of complex processes comprised of many interacting components. Why things happen is often unclear.

We need a map

In MS, the immune system attacks the brain. There are at least a few thousand pathways in the immune system – there’s no map. Dunn thinks we need one, because identifying the specific immune pathways driving disease can enable individually tailored treatment

Immune Hypertension

Dr. Dunn suggested that Multiple Sclerosis is an endstage name, like referring to a “stove fire” as a “burned down house”. He said a better name might be immune hypertension.

Thanks for listening

To the Whats The Matter With Me? Podcast
Other episodes at, iTunes, or wherever you get your podcasts..
Check out more of my music on
Hoppin Hot Sauce is a movement!
(Hoppin hot sauce theme)
Season 3 episode 2 in the books! Thanks for listening to the What’s The Matter With Me? Podcast.


JOHN HOPPIN: Welcome to What’s The Matter With Me, Season Three, Episode Two, Scene Report: MS Breakthroughs. 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, so I made this podcast to share what I’m going through.

What’s The Matter With Me is an MS podcast, and it’s also about other things. Past episodes available for download on, iTunes, and wherever you get it. I’m not a medical professional, and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

In this episode, we’ll talk about the MS Breakthroughs conference. But first, last episode recap. Something happened at Bill’s Café, and I stepped in a hole, and I was on the radio. Check it out, surf on over to to get the last episode. It’s that time, shout outs to Rocky, always to Rocky. Shout outs.

Over the weekend my wife and I attended the MS Breakthroughs conference put on by the National MS Society. It was at a hotel in San Jose. Jeffrey Dunn, the Director of the Stanford MS Center, was the keynote speaker. The event promised to inform us all about the future of MS treatment. It started with free breakfast. I didn’t get the memo or something, I didn’t realize it was free breakfast. You know when you walk in a room and there’s a bunch of free breakfast, and you’ve just eaten breakfast, and you’re kind of like, “Dang …”

So I sat down at my table. My wife came with me. I sat next to Peter, a Canadian entrepreneur. His current venture involves coaching business people how to work across cultures. And he told me the danishes were good. I didn’t have one, but I admired, from one entrepreneur to another, I admired his gusto for free breakfast.

The Director of the National MS Society spoke, kind of singling out the organization. It was cool, we’ll talk a little bit more about that. But one thing she dropped on us, there was a recent study that came out, and it turns out Americans with MS number over one million, which is over twice the previously reported number. I thought that was kind of interesting.

Okay, so before the keynote address my Dr. Dunn, they had an award ceremony. I guess I don’t read things or pay attention or something, I just had no idea. So all these people are up there. They had research fundraisers, people raising money for the MS Society. Some people raised $250,000. One guy did $100,000 and wrote five pieces of legislation, and went to Sacramento and got three of them in with the representative somehow. I mean, this is crazy. Four people raised $1.1 million.

There was a cool guy, he runs a lot of local support groups, he has MS … He received an award. The volunteer of the year came from Alameda, and I used to work in Alameda, a little island right off of Oakland. I worked there supervising down syndrome adults at their jobs, collecting carts at the supermarket. And I found out, I was 20 or 22 … I was too old to have such a low paying job I think. I needed to get my act together. But I sat around all day reading the newspaper and supervising adults. But I found out on my breaks, you can’t drive 26 in Alameda without the authorities checking you out. They have it locked down in Alameda. Congratulations to the volunteer of the year, who’s name I didn’t write down. But it’s all love. Alameda, baby!

All right, Dr. Dunn got up, it was time for the keynote address. He started us off with some history of the MS Society. It began in 1945. A lady named [Sylvia Clarke 00:05:49], her brother got this disease. She made a New York Times ad, and it read, “Multiple Sclerosis: Will Anyone Recover From It? Please Communicate With the Patient.” And 54 replied. No one had a cure. And all 54 begged for help.

So this is this thing called splitting and grouping. So there were MS cases, but they were all far apart from each other. And they were all kind of isolated, spread out. So they formed this MS society. People started working together, became together as a group. They defined multiple sclerosis, and then from that they split again to specialty classifications, like classic MS or opticospinal MS, primary progressive, and so on. Group and splitting, that’s the scientific paradigm.

And I got a footnote here, according to this guy [Coon 00:07:01] in [inaudible 00:07:02], a loosely characterized group of activities often consisting of competing schools becomes a mature science when a few concrete problem solutions provide models for what good research is in that domain. These exemplary problems come solutions become the basis of a paradigm that defines what it is to do normal science. And specialization is speciation, as scientific progress heightens communication breakdown. Experts doing similar kinds of research come to realize that their use of key taxonomic terms no longer jives with mainline uses. And what Coon calls the No-Overlap Principle is violated. The group is using a taxonomic hierarchy for crucial [kind 00:08:08] terms, and the associated categories that is incompatible with that of the established tradition.

Splitting and grouping. That was a cool idea. That slide really blew my mind. Scientific paradigm, splitting, grouping, and splitting and grouping. Cool.

All right, no more footnotes in this section here. The footnotes are over, take a deep breath. Wow, that was big words and stuff. And it was a cool idea, science splitting and grouping. We’ll split from that section though, and just continuing on … Dr. Dunn, he said, “Hey, there it is. Biology is complicated. It’s the results of complex processes comprised of many interacting components. And why things happen is often unclear.” I guess there is some long words there, sorry about that.

In MS, the immune system attacks the brain. That’s what happens, that’s why people have problems. Symptoms become visible because the immune system is turning your brain into what they call plaque. You ever scrap plaque off your teeth? Anyway, it’s not good for thinking I don’t think. There are at least a few thousand pathways in the immune system, and there’s no map. And Dunn thinks we need a map, because identifying the specific immune pathways driving disease can enable individually tailored treatment.

And then he said something pretty interesting. He said, “Multiple sclerosis is an end-stage name, it’s the wrong name. It’s like calling a fire … If you have a fire on your stove, your house isn’t burnt down, right? But it’s calling what we have multiple sclerosis, it’s like calling a stove fire a burnt down house.” And he suggested the name Immune Hypertension.

There you have it, Immune Hypertension. Thanks for listening to Season Three, Episode Two, The Scene Reported: MS Breakthroughs. It’s a What’s The Matter With Me podcast. You can find other episodes at, iTunes, Google podcasts, wherever you get your podcasts, it’s there. Check out more of the music like this sick background music, Worldwide universal sponsor, Hoppin Hot Sauce is a movement-

Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world. The world, I’m telling you.

That’s right. Check it out, It’s Season Three, Episode Two, in the books. Thank you for listening to the What’s the Matter With Me podcast.