My name is John, I’m 38, husband, father to 2, I have multiple sclerosis, and I created the What’s The Matter With Me? podcast to share what I’m going through.

I believe in using the transformative power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Every man 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 interactions in the public sphere that create new connections 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.

MC

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

Welcome to What’s the Matter with Me? Season 3, Episode 8: “Walk MS MC.”

Coming up in this episode: last weekend I did Walk MS, I had a fundraising goal, and I raised more money than that. It was awesome. There were a lot of people with MS. I was the MC there. I stood on stage with a microphone. I posted on Reddit again, but I used the wrong word. Stay tuned.

My name is John

I’m 40 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I’m going through.

The What’s the Matter With Me? Podcast 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 and, if you need medical advice, ask your healthcare provider.

But first, let’s recap and give shout outs

I want to give the shout outs first. Shout outs to Kalim and shout outs to Mary and all the other people, Rusty, all the other people I’ve come into contact with in the last couple weeks about What’s the Matter With Me? You are listening to the What’s the Matter With Me? Podcast and it’s kind of about multiple sclerosis and other things, right?

Last episode recap

It was kind of a bummer birthday complaining episode, but, I don’t know, it must serve some purpose, right? Let’s just hope. It was like 6:15 in the morning, I was hanging in the sky chair outside my house, and I just kind of recorded the episode. I was just flowing. So, check it out. It’s kind of weird only in that weird way that we could do it here at the What’s the Matter With Me? Podcast.

Last weekend I did Walk MS

It was my first time. Walk MS is put on by The National MS Society, which is the largest fundraiser for MS research. The National MS Society Walk MS, they do these in different cities.

So, I had to MC. I was the MC. They contacted KFJC and they were looking for an MC. I was like, “Well, I guess I’ll do it. I’m the guy with MS around here.” I raised money.

They had me pick a goal

A fundraising goal, and I’m not really that kind of person, right? Or I don’t think of myself as that kind of person. I don’t even know what that kind of person’s supposed to be like, but I just don’t picture myself as a big fund raiser. Otherwise, I’d have money, I think.

They asked me to pick a goal. Another thing I’m not really great at, but I was just like, “Okay, dollar sign 1, 2, 3, 4. That’s my goal.” It was an easy goal. It seemed like a lot of money. The first thing I tried was 1, 2, 3, 4, 5, but that’s $12,000 and it would have made me like the number two fundraiser for the Silicon Valley Walk MS. I was like, “Maybe that is too much. So, 1, 2, 3, 4.” I thought that was obtainable sounding. That wouldn’t put me in the top five or whatever.

They had the whole thing, like they had an automatic set up. They said, “Just share it on Facebook,” and they kind of had it all made out for you, and so I did that. Then I kind of wrote a couple things and posted a few. I customized the template, I guess. Some of my friends– I’ve got to say, I think something like 23 or it must be over 25 people supported me. That’s so many people. And then they gave all together, they gave like $1,700. So, they exceeded my kind of somewhat admittedly kind of arbitrary goal, but they exceeded it and that’s awesome.

I went to the event and the event in itself was awesome

There’s a lot of people with MS there, lots, like hundreds. Maybe 700 people registered. I think that there was also teams. There were many teams of like as many as a dozen or more people walking. They had tshirts and they’d be like, “Team Bryan” or “Team Indra” or whatever, and they would all be walking, family and friends. It was kind of cool.

I was just there with Ras Babo, DJ Ras Babo, my man. He was there. We were just hanging out. They gave us microphones, they gave us a bunch of announcements to make, and we were off running. It was wonderful. We were MCs.

It’s kind of like this, right? But I was on stage in front of people, so it was like 100 times more awkward. But it’s okay. I’m good on stage. You just grin and make it happen. That’s on stage. Don’t look down and away and frown. That’s not what people need. Look straight at them and grin. Look over their heads if they freak you out. That’s cool.

Brutal landscape

It was cool all in all. I mean, the walk, it was a cool experience. But it was also kind of interesting because the actual physical geography of the walk, we were in downtown San Jose walking a Guadalupe river trail, which is a bike trail, a running trail, that goes through this kind of brutal, brutalist, giant cement spaces of downtown San Jose. But it has next to the path are like lots of grape vines, like tons of them. It’s kind of like downtown San Jose has been home to hobos for a long time, since the great depression. And so, you can imagine these hobos planting grapes and making like pruno. It’s very evocative landscape.

Also, for me, as a teenager I would go to the drum circle like on Wednesday nights in downtown San Jose. They would have it in front of the Tech Museum or sometimes in these concrete spaces next to the creek. And so, it’s kind of dirty there. I would say it’s filthy, but we walked all through there and they had cleaned it up. Somebody had power-washed it recently.

And so, we were walking through this space and I was in these spaces that I hadn’t been in since I was a teenager going to the drum circle. So, at the same time that I was having this together MS experience, I was also having this very solitary experience remembering my friend Mike and the other people at the drum circle and the weird scenes. It really took me back.

Weird times at the MS Walk

It was a lot of fun actually. Getting to see other people with MS and looking at them, all their families, and all their supporters, and just looking them in the face, you know? And having them look me in the face. It’s awesome. We’re just like, “This is us.” We are ourselves and that’s something that is powerful. You get power from that for sure.

I really enjoyed the Walk MS and I would do it again just to be in those weird brutal spaces of memory

Oh, the brutality of high school, of being a teenager in a city like San Jose with giant concrete walls, expanses with dirty rivers with solid waste floating in them, traveling through downtown San Jose with a pruno of 1930s hobos cascading down the hillside. It was quite beautiful actually.

About every 50 yards you would see kind of residue of encampment because San Jose has a real homeless population, a long standing homeless population. It’s a part of downtown San Jose and no one’s really figured it out, but in a way there’s just these giant concrete spaces and a river flowing through. A creek. It’s not a river. It’s a filthy creek flowing through downtown San Jose in the brutal spaces of memory. Taste the pruno.

Man, that was kind of intense. I recorded that yesterday, so coming in here tody and checking it out I’m like, “Whoa, I’m an intense dude.” Anyhow, taste the pruno. I don’t what that’s all supposed to be about. That’s kind of yucky, right? Little bit yucky.

I posted on Reddit

… and you know I have a checkered past with that, but it kind of worked. Made something work. I made a post. I called it Disability Porn. It was just a transcript from episode six, Social Isolation. Just a little bit, because I wanted to share what I was saying, but I didn’t want to be branded a self-promoter.

Actually, I would like to access this community on Reddit of the multiple sclerosis sub-Reddit with what I’m saying here. I’d like to also be able to say it there, but it gets complicated.

I made a post on Reddit called Disability Porn and it’s a transcript from episode six Social Isolation. It says, “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.” And then I finish up. I wrote, “That’s what they call disability porn. Where you’re watching it and you’re like, “Oh yeah, bless their hearts.””

I got a lot of responses

Like 28 people responded. Some people, a lot of people, were kind of bummed out that I called it Disability Porn because they were like, “Oh my gosh, I was looking for something totally different.” Or they were like, “Dude, it’s called inspiration porn,” which I kind of … I must have known that, but I messed it up. Like, big surprise.

Anyway, you know, some people had something interesting to say. Like this lady Claire wrote, “Gosh, I’ve always hated it and the thing I hate most is that sometimes my own family brings it up. They’ll find someone with a worse disability than mine and go on with the whole look how inspiring he or she is thing. That’s not inspiring to me at all. The fact that random stranger is presented as an inspiration to me just because of their disability makes me feel humiliated and also feels insulting to the stranger, too.”

I mean, like thoughtful responses. I think we could analyze that. There’s a lot there and it’s cool that I made it work. I made the multiple sclerosis sub Reddit work for me, but I called it Disability Porn and a lot of people said like, “That’s click bait.” That was the word of the day. I’m learning all these new words. Anyway, that was click bait. Whoops, I should have called it inspiration porn and that would not be click bait.

Thank you for listening to the What’s the Matter With Me? Podcast

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.

(singing)

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 Three, Episode Eight, Walk MS MC.

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.

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.

In the backyard

Hi. This is John and you’re listening to the What’s The Matter With Me podcast. I know I sound chilled out, but it’s like 6:15 in the morning. I’m outside my house in the back yard. I woke up around 5:45. I was having kind of some anxiety. My body wasn’t feeling very comfortable, and I wanted to be asleep, right? It’s 5:45 in the morning. I’m like, “No I don’t want to be awake.” But you know I need to go to the gym and get some energy out. I haven’t been there since Monday. It’s been John John’s spring break this week so I’ve been busy watching him.

It’s my birthday

Now it’s my 40th birthday, okay. I’ll drop it on you like that. Today it’s Friday. It’s my 40th birthday. And I’m awake this morning, like I said, feeling anxiety, feeling pain. I’m having trigeminal neuralgia pain in my mouth when I swallow. So I’ll wake up, yawn. There’ll be spit in my mouth and I’ll swallow it and it will hurt real bad. So things complicated this morning, but it is my birthday, my 40th birthday, and I wanted to reflect on that a little bit.

Thankful

You know having MS, having trigeminal neuralgia, getting old. I mean the thing is like everything is hard. All life is suffering. We’ve always got to remember that. To be honest, it’s my 40th birthday and I’m really very thankful … for my family, for my house. Right now I’m in my back yard and it’s spring. There are so many flowers all over the place. It’s beautiful. There are some flowers in the back, they look like sunny-side-up fried eggs. I call them the fried egg flowers.

Yesterday I barbecued chicken out here. We had chicken and grilled asparagus and Nami made potato salad. So we had this meal together, the kids and our family. We ate outside yesterday because it was a little warm. It was probably about 85. So it was nice. We had a good meal, and springtime is here in the garden.

My family, they’re beautiful people. John John went to an aerospace museum yesterday and loved it. He couldn’t fly the fancy flight simulator but he could fly the biplane. I’m thankful for the family. I picked Coco up from school yesterday because Nami was off work. She was here. I picked Coco up and she goes to me, “Papa, it’s your birthday.” And you know, it’s my birthday today, not yesterday, but just that she has some concepts or cares about my birthday. It really made me happy. It touched me.

Feels like an ax chopping my soul in half

And to be out here. To be with the family. Life is beautiful. Nature is beautiful. Even though I feel this horrible pain from trigeminal neuralgia … I described it recently. It’s like an ax. Someone’s chopping my soul in half with an ax. It really hurts. And my arm is really spastic and really clawed up, and my muscle is sore, my arm is sore. It really upsets me to have one usable arm and the other one, it’s kind of not usable unless I can use it as a door stop or something. I can push on things with it, kind of.

Problems compound easily

So, you know, I’m having all this anxiety. That pain, trigeminal neuralgia pain I was talking about, that gives anxiety. You know something my therapist once told me is that when you’re feeling that kind of anxiety, it makes pain worse. You feel more upset when you’re in pain. You know it seems simple idea, right? If something is upsetting you it makes other things that are upsetting you seem more upsetting. If one thing is upsetting you and it alone, that would be that. But if one thing is upsetting you and then something else is, both things feed back off each other. So it’s important to remember that because I am going through a lot physically and it wears me down.

You know I feel really upset talking about it, but I have to bear in mind that a lot is going on and happening. So I have to stay cool really. That’s kind of what I think to myself. I’m like, “Stay cool, Hoppin, stay cool.” So I’m going to turn the page on all these upset feelings. I’m going to stay cool and remember, bear in mind, all this stuff … Being upset makes other things worse. You know if I’m upset it’s going to make my MS worse.

So I’m just going to take a deep breath for a second, and pause.

I’m going to get back to talking about the garden and my family, things that make me really thankful to have reached 40 years old. I’m really proud and I have a lot to look forward to. My kids are going to go through a lot. They’re going to grow. They’re going to have a family. That’s a whole, that’s like …, I’m too emotional. They’re going to grow and have a family. And that’s a great thing.

Animal brain damaged

Something that my neurologist told me, I have a lot of brain damage in the brain stem area. That’s like your under brain, your animal brain. So near that area damage, it can cause you to have a hard time regulating your emotions. I think anyone would have a hard time, maybe. I’m probably being a little bit hard on myself to be like, “That’s why I’m upset.” I’m upset because I’m having pain and I’m awake. Insomnia, anxiety, trigeminal neuralgia, multiple sclerosis … you know, whatever … blah, blah, blah.

I don’t need to list it out, but I’m upset for real reasons. But also I have brain damage in my brain stem and it causes me to have difficulty regulating my emotions. So if I get too angry or if I get in a confrontation, I’ll flip out. People that know me are like, “Oh, that’s why he acts like a total lunatic.” Hey, you guys, this is the secret. I have brain damage in my brain stem. I mean that sounds like a cop out, right? I mean I’ve always thought it must be because I’m a lunatic that I act this way. But it’s because I get whiffed up in the moment and I lose it. That’s with anger. They say the anger is a sword that you wield that also as you use it against your perceived enemy you also are using it against yourself. That’s a big difficulty for me.

Anyway, now I’m hanging out here in the garden and I’m starting to see, “Oh, that plant needs water,” or whatever. Stuff like that. There’s a cat on the fence. Life is good. I’m 40. And nothing like being a gardener in your garden to get your mind off everything except being a gardener. I’m looking at this plant that I planted a few months ago. It hasn’t rained for about a week. And I’m starting to be like, “Does that plant need water?”

One of the complaining episodes

But I need to focus here on the What’s the Matter With Me podcast, and my 40th birthday, and thank you for listening. It’s kind of short episode. A lot of complaining. One of the complaining episodes, processing insomnia, trigeminal neuralgia, multiple sclerosis, pain, discomfort, and anxiety.

Let’s talk about the garden a little bit. I water it all by hand, and that’s a difficulty. But it’s a challenge. There’s no sprinkler. There’s just a hose. So I drag the hose around, and, obviously that’s hard because I walk with a cane. How am I going to carry a hose through the garden? Well, I get it done, but it’s complicated.

Falling in the garden

And last summer I fell a lot during the summer. Like basically every day. I had six tomato plants and four pepper plants. Something like that. And I fell a lot. They didn’t yield very much and I spent a lot of time in the really hot sun dragging the hose around. They yielded a lot. But when I was a kid my grandfather grew tomatoes. He was raised on a farm in Tennessee. So he was a farmer. He would grow tomatoes, and when it was time to harvest tomatoes … I remember it. You know I remember it through a kid’s eyes. Also that’s distorted in a way. I remember the tomatoes covering the entire countertop. He grew Roma tomatoes. He covered the entire countertop with them.

I did pretty good last year. I covered the countertop. I bet my kids got that in their eyes. But this year I haven’t planted tomatoes or peppers, and it’s kind of late to do so. And I think I’m not going to. I’m kind of sad about that because just like anyone I like a homegrown tomato. And also I have this memory of my grandfather and I feel sad that I’m not growing them. But I also feel happy that I’m not going to fall.

I fell so much. It was so hard. Because with tomatoes if you’re watering them by hand, you’ve got to get the hose around the tomatoes. You’ve got to make sure the hose doesn’t hurt the plants and you’ve got to get … It’s just too much for me. My garden is flat, thankfully, but it’s not even terrain. It’s dirt, and mulch, and piles of stuff. So it’s difficult to walk in, which is a good thing. But too much of a good thing can be a bad thing. And I fell a lot last year, so I don’t have tomatoes this year. I’m kind of sad about it but I’m going to be okay with that.

Everything in life is a trade-off. I just hope that I transmitted that tomato lust to my children and that they’ll grow tomatoes. Because it’s a good thing to grow things. We have a lot of fruit, a lot of apricots. Last night at dinner they were looking at the apricots and the figs on the fig tree. I was like, “Don’t touch them or you won’t eat them.” That’s a concept they’re trying to get, is like if you touch the tomatoes … Sorry, not tomatoes. If you mess with the apricots or the figs or any other fruit before it’s ready to be picked it won’t be good when it’s time to pick it. These are common, good sense lessons for a person to learn and to really internalize. My grandfather taught them to me so I’m trying to get the kids to know them.

Birthday indulging

Tonight I’m going to have dinner for my 40th birthday at parents’ house. They asked me what I want. I said, “Let’s barbecue.” I’m a Californian … I’m a barbecuer. People who know me know I love to barbecue. So we’ll barbecue and celebrate my 40th birthday. We already went out a couple of nights ago. Nami and I went to a nice restaurant here in San Jose, and we ate so much, and we drank so much. So I still basically feel hungover from that. It was night before last. I still feel chilled out.

Maybe that’s adding to my anxiety. Remember that saying about how when you feel bad that you can compound upon other challenges you have. So I have a lot of compounding. But the real problem is I’m hungover. I’m going to blame everything on that.

I am here

Thanks for listening to the What’s the Matter with Me? Podcast. You can find it on Apple podcasts, find it on iTunes. Wait, that’s the same thing. I have to learn that. Apple podcasts and iTunes are the same thing. Find it on WhatsTheMatterWithMe.org. You could just Google it, What’s the Matter with Me? Podcast. It won’t be that hard to find I don’t think. And if it is, you can contact me at whatsthematterwithme.org. Send me an email and be like, “I can’t find it. Are you gone?” And I’ll be like, “No. I am here.” I am here. Thank you for listening to the What’s the Matter with Me? Podcast.

Thanks for listening

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

Thanks you for listening to the What;s the Matter With Me? Podcast S3 E7: It’s my birthday.

Post

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.

Sitting

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.

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.

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.

Assembly

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.

chairs

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.

Transcript


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 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.

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 whatsthematteriwthme.org, iTunes, or wherever you get your podcasts.

Check out more of this cool music that I make on soundcloud.com/john-hoppin. 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. Hoppinhotsauce.com.

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

Garden

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.

Alameda

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 whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
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.

Transcript

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.

Flyer on table

Something Happened at Bill’s Cafe

I order coffee and toast, John John gets pancakes.
Tap on my shoulder, our host –
“Excuse me sir, is that.. your underwear?”

Injury in the yard

I was working in the yard, fertilizing some yellow cauliflower plants.
I stepped in a hole leftover from when we pulled out tomato plants and I fell to my side. It felt like i tweaked it.
I was in a wheelchair or bed ridden. I had a lot of work to finish before Christmas.

I was on the radio

Last Friday, I hosted the Jazz Collective on 89.7 kfjc.org
This morning at 4am i got this message:

Y o your jazz collective was the stuff man. I played all of it while cooking dinner and hanging with friends. Nice balance of easy listening and skronk. Omg it was so fat

Anonymous

There’s no difference

Its cool to be on the radio where i can have a voice and it doesn’t make a difference that i’m disabled..i like playing records too.
Check it out: Jazz Collective last Friday at kfjc.org
My air name is Hemroid The Leader. i’ll explain later.
The stream is up for 2 weeks.

MS Breakthroughs

I’ll be attending MS Breakthroughs with Jeffrey Dunn on Saturday January 26 in San Jose.
I’ll bring some flyers in case somebody wants to hear a podcast.

MS Breakthroughs

Join us to learn about our progress this past year in accelerating breakthroughs for people affected by MS, what’s in store for the year ahead and enjoy a research update from our keynote speaker Jeffrey Dunn, MD, Professor of Clinical Neurology and Division Chief of Clinical Neuroimmunology at Stanford Neuroscience Health Center at Stanford University in Palo Alto, California.

He serves as the Chair of the MS Section of the American Academy of Neurology and serves on the National Medical Advisory Board of the National MS Society.

Re

Thanks for listening

To the Whats The Matter With Me? Podcast
Other episodes at whatsthematterwithme.org, iTunes, or wherever you get your podcasts..
Check out more of my music on soundcloud.com
Hoppin Hot Sauce is a movement! makes every plate taste great hoppinhotsauce.com
(Hoppin hot sauce theme)
Season 3 episode 1 in the books

Transcript

JOHN: Welcome to the What’s the Matter with Me? Podcast, season three, episode one: Something Happened At Bill’s Cafe.

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.

The What’s the Matter With Me? Podcast Is an MS Podcast, and it’s also about other things. Past episodes are 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 health care provider.

Recap, recap, I post … man, I get too excited sometimes. Recap, I posted live from the Petaluma Smart Train Station. Check it out, surf on over to whatsthematterwithme.org, season two, episode 16. Check it out. Gotta give big shout outs, big, many thanks, shout outs to Rocky, Shauskin and Patrick, and most of all, especially Nami. Shout outs.

You know, something happened at Bill’s Cafe. I felt that morning when I woke up, I was by my bed getting dressed. It felt kind of strange when I put my pants on. I checked it out. In the leg with my brace, I was putting it on, it felt kind of weird. Then I had my morning, I went ahead, I dropped Coco at school and parked there, walked from the car to the classroom. I was with John John. We all went. I dropped her off, everything was cool, everything was normal. And I took John John to the dentist, and I’ve read, probably on my phone in the waiting room, and it’s all good. It was done and he had a good appointment, we went back to the car, everything normal.

Bill’s Cafe. I went to Bill’s Cafe. Bill’s Cafe is a popular, like, brunch chain around here. So I wanted to take John John for some pancakes. He did good at his dentist appointment and I wanted to reward him. So I ordered coffee and toast, and John John got the pancakes, and then I felt a tap on my shoulder, and I looked out and I was like, no. And the host, the host was there. It’s 11:00 AM, there’s like a coffee shop vibe all around. People who were eating Brunch at 11:00 AM on a Tuesday, you know, it’s an interesting scene. It’s like retired people, and weirdos. And my dirty underwear that I wore yesterday is in the middle of the floor.

The guy is like, “Excuse me sir, is that your underwear?” I’m like, “Why yes it is,” you know, and so I got it, I stuffed it, I mean, what do you … I can’t be like “No, clean it up,” right? So I stuffed it in my pocket, and I played it off, and I knew I was just like, this, this is like, so … I’m mortified, right? But I’m like, no, do not be mortified. Just play it off. And I played it off, but the pressure was high. My something happened to Bill’s Cafe, my dirty underwear was it. And I felt weird putting my pants on in the morning, you know? Always check your pants I guess, or I don’t know what the moral is here.

Okay, well that’s out of the way. Before the holidays, I had a pretty bad accident. One Sunday morning I was working in the yard, and I was fertilizing some yellow cauliflower plants. We got some yellow cauliflower plants cause we were like, they’re weird color. I thought the kids would dig that. So we also pulled up the tomato plants when we planted the cauliflower, you know, and the tomato plants leftover from the summer, they were big, you know. So they made holes when we pulled ’em up and we forgot to fill ’em I guess, we didn’t really even think about it. And when we pulled out the tomato plants, then I stepped in the hole and fell to my side. And I kinda felt like I tweaked it. It was really hard to get up. Of course I was just about to leave the house so I got mud all over myself. I had to go inside and change and clean my shoe because I got to wear it ’cause my brace is in there.

So I was totally a mess, and it kind of felt like I tweaked it. I went to Oakland, and I met this rad dude, BJ Miller. I’m going to talk about him maybe next episode. And by the time we got home that night, you know we’ve been out all day. It was kinda cool, but then all of a sudden I couldn’t walk. I couldn’t put any weight on it. And then it was just, we had to go to the hospital, get crutches, that didn’t work. So we got a wheelchair, and it took like five days.

Nami helped me get up and wake up, go to the bathroom, get dressed. I was like a mess. And my buddy Manny, he helped me out, came by in the daytime, hanging out at dinner. He was cool, and it was super tough to be in a wheelchair, and bed ridden and … ‘Cause I had kind of tweaked my left hip and my left leg is the one that’s useful. So it was kind of … it was very touch and go. So I was bed ridden and I had a lot of work to do before Christmas, but I couldn’t do anything. I’m on pain meds and it was hard. And people helped me though, and am really grateful that I’ve recovered, but I had a bad accident. I was not digging that.

I was on the radio. Last Friday I hosted the jazz collective on 89.7 KFJC.org. It’s a jazz show. This morning at 4:00 AM I got this message: “Yo, your jazz collective was the stuff, man. I played all of it while cooking dinner and hanging out with friends. Nice balance of easy listening and skronk. OMG it was so phat.” It’s cool to be on the radio where I can have a voice and it doesn’t make a difference, any difference at all, that I’m disabled and I like playing records too. I have a good time. Check it out. Jazz collective last Friday, you can get it from KFJC.org. Just go to the homepage. Click on more from the archive, and my air name is Hemorrhoid the Leader. I guess I’ll have to explain that later.

On Saturday, January 26th in San Jose, I’ll be attending MS Breakthroughs. It’s an event put on by the MS Society. I’ll bring some flyers in case somebody there wants to check out a podcast. MS Breakthroughs: join us to learn about our progress this past year in accelerating breakthroughs for people affected by MS, what’s in store for the year ahead, and enjoy a research update from our keynote speaker Geoffrey Dunn, MD, professor of clinical neurology and division chief of clinical neuroimmunology at Stanford Neuroscience Health Center at Stanford University in Palo Alto, California. He serves on the chair of the MS section of the American Academy of Neurology and serves on the National Medical Advisory Board of the National MS Society. Jeffrey Dunn at Ms Breakthrough, San Jose, California, Saturday, January 26. The Courtyard by Marriott, San Jose, North Silicon Valley. Register at nationalmssociety.org.

For sure I’ll let you know how it goes. Thanks for listening. Thanks for tuning into The What’s the Matter With Me podcast. Other episodes are at whatsthematterwithme.org, iTunes, or wherever you get your podcasts. Check out more of my music on soundcloud.com/John-Hoppin. That’s J-O-H-N dash H-O-P-P-I-N. And of course sponsor, word from our sponsor. Hoppin Hot Sauce, it’s the best hot sauce. Hoppin Hot Sauce, it’s the best sauce in the world! That we’re not telling you! Makes every plate great, hoppinhotsauce.com. Season three, episode one in the books. Thank you for listening to the What’s the Matter With Me podcast.

Beach

LIVE From The Petaluma SMART Station

My brace helps me to walk, but it doesn’t mean I can go out walking. I learned it the hard way yesterday when I went out in Petaluma.

Live broadcast from a bench outside the Petaluma SMART Station.

Sorry I’ve been away

I’ve been doing events for Hoppin Hot Sauce.

BJ Miller

I met BJ Miller at a latke party. I have been wanting to meet him in person to this article in the New York Times from January 2017. I got to sit down right next to him and talk, it was awesome. Tell you more later

Thanks for listening

I’m looking forward to more episodes in 2019.

 

Transcript:

It’s the What’s the Matter With Me? Podcast season three, episode 17. I’m at the Petaluma Smart Train station. I’m chilling here on a bench. I tried walking from here to downtown Petaluma, it’s just a couple blocks they told me. You know it is just a couple blocks but they’re really long, redeveloped blocks and it was killing me. So I had to call it off around the bridge. It’s just past the grocery outlet over the bridge and you’re in downtown Petaluma. And that’s where my mom and my wife and my wife’s mother and my two kids are running around in downtown Petaluma right now but I had to call it off.

And my wife told me take a car back to the train station, but it was just a block and a half. I could see it and I’m kinda stubborn. So I went on ahead and now I’m sitting on the bench outside the train station rubbing my foot ’cause I wear a brace and every step I take it gets a little tighter, it hurts a little more on my ankle, and then if I’m on like a long walk like that, it can really start to hurt. And it gets to be like carbon fiber on bone or on pressure point or something, I can barely take a step. And in fact I like almost fall down because it hurts so much.

Anyhow, now I made it though. I made it back to the station, I’m sitting on the bench, I got my brace off and I’m rubbing my ankle. Man, it was a tough walk. It took about maybe it took 20 minutes round trip but that was enough to really start … the thing about my brace I’m realizing is it makes it so I can walk so I can walk, but it doesn’t make it so I can go for a walk. You know what I mean? Petaluma’s always got old style cars and motorcycles so that’s what you’re hearing in the background. I’m right by the train station, maybe we’ll hear a train arrive.

Anyhow it was a pretty much bummer walk and now I’m here sitting on a bench outside the train station with my brace off wearing my sock, I look like quite a sight I’m sure. Anyhow I wanted to get on the mic here. I’m out of town, I’m in Santa Rosa, like I said my whole family is up here. And just chilling out before the New Years, on the New Years Day I’m gonna be broadcasting blues music from 10:00a-2:00pm on KFJC. Check it out on kfjc.org. I’m gonna play blues music. There’s something I feel again when I hear that music, I know it’s cheesy but man I hear blues music and I’m like right on. Right on with you right on. Right on. I can’t even right on it enough, I love blues.

So I’m excited to DJ that show, it’s four hours of blues music on New Years Day, what a way to start the year. I’ve been off the air because I been doing a lot of work with hoppin’ hot sauce. We did a sale. I met BJ Miller and the disability right to advocate BJ Miller. He runs a San Francisco Zen Hospice. It’s part of UCSF, he’s a palliative care doctor and a triple amputee. He’s someone I really look up to so it was rad, I went to a [inaudible 00:04:51] and there he was. So I sat on the couch and chopped it up with him. And that was something I’d really been wanting to do for about a year, since the New York Times published a piece about him.

And his work, getting a motorcycle and then bringing the motorcycle mechanic through hospice. Anyway it was really cool I got to meet BJ Miller, I’ll tell about that in the upcoming year. I just wanna get you pumped for season three, that’s what’s coming up in 2019. And I’m gonna try and record more episodes, I’ve been off the air and I’ve been missing it. I been selling a lot of hot sauce, I’ll tell you all about that. I had people help me and as a disabled business man I’m starting to realize you need help. And people are stepping up, that’s the beauty of existence. When you need help, people step up and help you.

And you know I’m a business man, I don’t know what I’m doing. I’m doing my best to sell this hot sauce. It tastes good, you know. So that’s the basic for and after of the whole nine yards. I just tell people try this, it tastes good. Anyway I’ll tell all about that hot sauce business holiday. I’m still doing accounting and all that stuff but you know what, my friends are gonna help me. My family’s gonna get back pretty quick and we’re gonna take the train north from Petaluma to downtown Santa Rosa, get back in the car, maybe we’ll have lunch somewhere. Lunch is definitely something we’ll be looking into immediately.

So anyhow I’m gonna sign off here from the Petaluma station. What’s the Matter With Me? Podcast episode 17, season two, episode 17. I think that’s where we’re at, maybe 16. I didn’t do a lot this year. I got a new set up and I really focused on Hoppin Hot Sauce. And that’s been interesting. But I’m having this disappointing day where I wanted to walk around Petaluma with my family but that was a stupid plan ’cause I have a brace and it’s hard for me to walk so it didn’t work. Surprise, surprise. I gotta figure out something. It made me pretty unhappy but I walked back here and I’m happy to not be in pain basically.

I wish I could be hanging out with my kids and having fun down at the river. But you know I’m up here and I’m just trying to chill out and get centered, get focused. New Year’s coming up everybody. So 2019 is coming. Time to elevate constant, daily elevation. Evolution. All right you guys. Thanks for tuning in, this is the What’s the Matter With Me? Podcast episode 16. Stay cool. See you next year.

reddit

Welcome to Whats The Matter With Me? Season 2, Episode 15: Misadventures in r/MultipleSclerosis

In this episode, I head to the r/MultipleSclerosis subreddit for support, and get mixed results.  Is my message insulting or inspiring?  It depends on who you ask.

  • 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.
  • Whats The Matter With Me? is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

Last Episode Recap

I had a booth at the Harvest Festival, i went to a glamorous wedding in LA. Check it out on whatsthematterwithme.org

r/MultipleSclerosis Thread

I posted the last episode on Reddit and I had an interesting response. I’ll just read it for you and then we can talk about it

The post was called, “We can achieve what we set our minds to, we just might have to do it a bit differently.”  Underneath that there is a picture of The Hoppin Hot Sauce booth at the Harvest Festival.
The caption reads, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. I believe that us MS warriors can do whatever we put our minds to, and I think it is a good thing to push against the limitations MS puts in front of us.”

Excerpted from What’s The Matter With Me Podcast Season 2, Episode 14: Harvest Festival

Hoppin Hot Sauce went to the Harvest Festival at Marshall Cottle Park in San Jose. We set up a booth with bottles, posters, easels, myself and my wife passing out samples.. My goals were #1- to represent the brand and #2- to sell some sauce. We did well.

It was 5 hours of talking, very tiring and I slept the whole next day. Next time I will be sure there are two people with me, not just me. I am no good to fold a popup canopy no matter how easy it is. i made a video about it and put it on our youtube channel.

Check out the full episode at whatsthematterwithme.org, or listen at Apple Podcasts or stitcher.

R

I ended it, “We can achieve what we set our minds to, we just might have to do it a bit differently,”

Discussion… Things Get Interesting

The first comment was “Yeah, I get what you’re saying, but the truth is there are many people with MS that can’t just push through and this message is kind of insulting for them.”

I replied, “I appreciate your perspective, thank you for sharing it. I didn’t mean insult anyone. I started the podcast as a way to take charge of my own representation, to create a positive image of someone who is affected by multiple sclerosis but is attempting to enact positive change in their life regardless of the limitations.”

The response, “No worries! Just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.”

And another person responds, “Thank you for posting. These were my thoughts exactly. Your running a marathon with MS is my getting out of bed.”

Another, “Congrats on your business.
Many here are much further along in our MS journeys.
Do what you can while you can.”

Somebody chimed in to buy some hot sauce, we did the deal.

And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here, and if it goes to a good cause, even better! You’re a shining light man, a testament to never stop pursuing your dreams, no matter what looks you in the face and says “bet you can’t.”
Wishing you all the best.”

That last response picks me up a little. It’s from a young person, a 29 year old.

People Say You Can’t Accomplish What You Want To

There is a lot of information about MS saying that you can’t do what you want to do. That you will have disappointment if you try. When I got diagnosed, I didn’t accept that.

Everything is finite For everybody. We’re all here on Earth and none of us is getting out alive. I think you should use what you got while you got it and that goes for everyone.

No Offense

Some of the comments on this thread made me feel sad. First of all I don’t mean to insult anyone.

There Is A Place For Each Of Us

I think we all should try as hard as we can, and that’s why we’re here on this planet. I think everyone has different abilities regardless of whether they have MS or if they’re tall or short or whatever. I can’t dunk a basketball. if I want to be involved with basketball I have to work in the front office or as a coach. I am not going to make the team. but if I love basketball I can find a way to be involved, to make it my life even.

I want to make that clear regardless of our abilities we can follow our passion and try to find fulfillment, which for me is fulfillment itself.

I made this podcast to encourage others to try , not to compare myself to others.

I Felt Judged

I felt a little bit judged. I have had Ms for 20 years and it’s not an easy time.
I peed my pants a bunch of times. I feel like a total complainer but I’m not even started I have so many other problems related to Ms. I could go on and on.

No Spring Chicken

I’ve had Ms for 20 years. I did not appreciate having people tell me I’m at the beginning of my MS Journey. I’ve got a long way to go but I’m no spring chicken.

Thanks for listening

Thank you for listening to the What’s The Matter With Me? Podcast

Transcript:

Welcome to What’s The Matter With Me? Season two, Episode 15.

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 show what I’m going through.

What’s The Matter With Me? is an MS podcast, and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, as your health care provider.

All right, let’s get going. What’s The Matter With Me? Episode 15. First off, let’s recap. Recap last episode, I had a booth at the Harvest Fair. And I went to a glamorous wedding in Los Angeles. Check it out. It’s on whatsthematterwithme.org.

Okay, check this out. I posted the last episode to the Multiple Sclerosis subreddit and I had an interesting response. Those of you listening back, I have hit the subreddit before and had kind of interesting times on Reddit. So, I’ll just read it for you and then we can break it down.

The post that I wrote was called, We Can Achieve What We Set Our Minds To, We Just Might Have To Do It A Bit Differently. And underneath that, there was a picture of the Hoppin Hot Sauce Booth that I used for the picture of the last episode. I wrote, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. And I believe that us MS warriors can do what we put our minds to. It’s a good think to push against the limitations MS puts in front of us.” And then I had an excerpt from the post, talking about Hoppin Hot Sauce went to the Harvest Festival. It was hard. There was talking. I had to sleep the next day. And check out the full episode. And I ended it out by saying, “We can achieve what we set our minds to. We just might have to do it a bit differently.” And then, I started to get response and this is always when things get interesting.

So, I always go to Reddit, and I’m like, “These are my people, they’ll support me,” and it always ends up just being a little bit different. Because what it is, is it’s an online forum full of anyone. And it wasn’t too bad. People didn’t hate on me but I thought it was a mixed bag. So, I ended it up, “We can achieve what we set our minds to. We just might have to do it a bit differently.” The first comment was, “Yeah, I get what you’re saying, but the truth is there are many people with MS that can’t just push through, and this message is kind of insulting for them.”

So, I had to take a step back off of that because I didn’t mean to insult anybody. I was looking for support here, and now I’m insulting people. Something has gone wrong.

I replied, “I appreciate your perspective. Thank you for sharing it, and I didn’t mean to insult anyone. I started the podcast as a way to take charge of my own representation. To create a positive image of someone affected by Multiple Sclerosis. But attempting to enact positive change in their life regardless of the limitations.”

The response, “No worries. I was just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.” And at that point, another person responded. “Thank you for posting. These were my thoughts exactly. You running a marathon with MS is my getting out of bed.” And then another response, “Congrats on your business. Many here are much further along in our MS journeys. Do what you can while you can.” Somebody chimed in to buy some hot sauce. We did the deal. That was good. I’ll take that.

And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here. And if it goes for a good cause, even better. You’re a shining light, man. A testament to never stop pursuing your dreams, no matter what looks you in the face and says, ‘Bet you can’t.’ Wishing you all the best.” That last response picked me up a little. It’s from a young person, a 29 year old guy.

There’s a lot of information about MS saying, when you get it you get told you can’t do what you wanna do. That you will have disappointment if you try. When I got MS, I didn’t accept that idea. Everything is finite for everybody, is what I thought. We’re all here on earth and none of us is getting outta here alive. And I think you should use what you got, while you got it, and that goes for everybody.

Some of the comments on the thread made me feel kind of sad. First of all, I didn’t mean to insult anyone. That was tough to hear, because I really don’t mean to insult anyone. And I think we should all try as hard as we can. That’s why we’re here on this planet. I think everyone has different abilities, regardless of whether they have MS, or if they’re tall, or short or whatever. I can’t dunk at a basketball. If I wanna be involved with basketball, I have to work in the front office or as a coach. Or as a towel boy, a water boy, whatever. I’m not going to make the team, but if I love basketball, I can find a way to get involved with it. To make it my life, even.

I wanna make that clear. Regardless of our abilities, we can follow our passion and try to find fulfillment. And to me, that’s finding fulfillment itself, just trying to find it.

I made this podcast to encourage others to trying, and not to compare myself or insult people. And the other end, I felt a little bit judged. I’ve had MS for 20 years and it’s no cakewalk. I peed my pants a bunch of times, and anyone who pees their pants can tell you that sucks. I felt like a total complainer but I’m not. I’m just getting started. I have so many other problems related to MS, I could go on and on. I say the wrong word, I forget what I’m talking about. What do you want? I had the MS for 20 years and I don’t appreciate people telling me I’m at the beginning of my journey. I got a long way to go for sure, and I understand that perspective. And that’s how I look at it, but I wasn’t born yesterday and I wasn’t diagnosed yesterday.

Anyway, thanks for listening to this. I think that what I’m gonna learn is that going on Reddit for support is a mixed bag, because anyone can be there and say whatever they want. And that’s the whole point of it and that’s why it’s good. But at the same time, I might be barking up the wrong tree to bring my message there, looking for support. I’m not really sure. I just don’t know what to do really. It stopped me from making an episode for a while, because I wasn’t sure how to deal with it. But I’m just gonna keep on going. That’s the only way.

So, this is What’s The Matter With Me, Episode 15 in the books. I went to Reddit and probably won’t go back there after this episode. Maybe next episode, I’ll go back there looking for help again. Come back here being like, “Reddit was mean to me.” I mean, who cares really. You try what you can. Everything is finite. Not everyone can dunk a basketball. Not everyone can palm a basketball. I could. I was a heavy kid, and now I’m not. I’m six feet tall. I do not have hops, let me tell you. And I’m not making the team. You know, I can’t put a body on the rebound but that’s about it. You know, maybe I’ll get dinged up in football. I should play football, but I got enough upstairs to worry about.

Anyway, Season Two, Episode 15. Just complaining, looking for support. I don’t even know what this is about anymore or why do this, but it’s another one in the books. Thank you for listening. Stay tuned ’til next time. Thank you for listening to the What’s The Matter With Me? podcast.