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.
What’s The Matter With Me? Podcast Season 3, Episode 14 Excerpt: “Flapping My Arms”
One thing I did notice about the last episode is that I’m flapping my arms again. I first figured out of it about flapping my arms in episode five:
“and this is kind of joking, I guess. I get nervous, you know. You know, if you ever see me like making fart noise or flapping my arms, you know, somebody very close to me has died.”
What it means, basically that. When I’m flapping my arms again, you know I’m scared. I make jokes, it’s because I’m scared.
Trigeminal neuralgia hurts like hell. I’m going to have micro vascular decompression surgery, get out of pain, get off these pain medications, and contribute to my family again.
I signed up to have surgery. They’re going to pop a hole in my skull and operate on my trigeminal nerve. It’s called micro vascular decompression surgery.
https://whatsthematterwithme.org/wp-content/uploads/2019/08/s3-e13-im-going-to-have-surgery.jpg12001600Johnhttps://whatsthematterwithme.org/wp-content/uploads/2017/11/cropped-icons.pngJohn2019-08-21 21:35:372019-08-22 22:31:47I'm going to have micro vascular decompression surgery (MVD)
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.
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.
https://whatsthematterwithme.org/wp-content/uploads/2019/06/KOKOS-BDAY.jpg18021802Johnhttps://whatsthematterwithme.org/wp-content/uploads/2017/11/cropped-icons.pngJohn2019-06-01 02:33:252019-07-02 00:12:10Happy Birthday Koko
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.
https://whatsthematterwithme.org/wp-content/uploads/2019/05/walkmsmc.jpg6301200Johnhttps://whatsthematterwithme.org/wp-content/uploads/2017/11/cropped-icons.pngJohn2019-05-09 19:36:372019-07-02 00:12:43Walk MS MC
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.
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 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.
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 WhatsTheMatterWithMe.org 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.
(singing)
It’s a movement, Hoppin Hot Sauce is a movement, check it out HoppinHotSauce.com.
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 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.
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.
I almost don’t have a lot to say. I mean a lot has happened in the last few weeks.
Scooter-shy
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.
Commencement
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, 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.
https://whatsthematterwithme.org/wp-content/uploads/2019/04/scooterFB.jpg6301200Johnhttps://whatsthematterwithme.org/wp-content/uploads/2017/11/cropped-icons.pngJohn2019-04-09 18:27:342019-04-16 21:33:28Matrix of Domination
