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.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 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.
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.
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.
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.
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
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
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(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 Whatsthematterwithme.org, 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 Whatsthematterwithme.org 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 Whatsthematterwithme.org, iTunes, Google podcasts, wherever you get your podcasts, it’s there. Check out more of the music like this sick background music, Soundcloud.com/john-hoppin. 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, Hoppinhotsauce.com. It’s Season Three, Episode Two, in the books. Thank you for listening to the What’s the Matter With Me podcast.