My life feels totally different now
I have a lot more energy and I am much more present. I’m able to think complicated thoughts.
I have a lot more energy and I am much more present. I’m able to think complicated thoughts.
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 WhatsTheMatterWithMe.org, 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.
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.
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.
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.
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.
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.
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.
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 WhatsTheMatterWithMe.org and Apple Podcasts, and whatever app you use, just use it. Find the What’s The Matter With Me? Podcast.
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 HoppinHotSauce.com.
Thank you for listening to the What’s The Matter With Me? Podcast, Season 3, Episode 6: Social Isolation.
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 whatsthematterwithme.org, 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.
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.
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.”
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.
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.
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.
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 to What’s The Matter With Me? Podcast, season three episode five: Matrix of Domination. Find other episodes at Apple Podcasts, whatsthematterwithme.org 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. hoppinhotsauce.com. 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 WhatsTheMatterWithMe.org, 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 WhatsTheMatterWithMe.org.
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, Soundcloud.com/john-hoppin.
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, WhatstheMatterWithMe.org, 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, HoppinHotSauce.com.
Thank you for listening to the What’s the Matter With Me? podcast, Season 3, Episode 4, Mobility Assistance, in the books.