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

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

My name is John, I’m 39 years old, husband, and father of two, small-business owner, radio DJ, podcaster, and I have multiple sclerosis. So I made the What’s The Matter With Me? Podcast to share what I’m going through.

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

Interrupted by a phonecall

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

(phone ringing)

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

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

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

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

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

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

Ableism, Disability Porn and the Right To Be Uninspiring

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

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

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

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

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

Stress at work

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

I need a scooter

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

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

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

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

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

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

This was therapeutic

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

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

Hoppin Hot Sauce is the best sauce in the world

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

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

(singing)

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

Thank you

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

Welcome back to the What’s The Matter With Me? Podcast for Episode 5: Gallows Humor

In this episode, I have bad reaction to an MRI, suffering fever and headaches for days.  I come through it with the help of my wife.

Recap Ep. 4

Recap – last episode, I tried to wrap my head around the idea of asking for and receiving help.  A listener wrote in to tell me that asking for help increases effectiveness.  We talked about the determination to continue despite the demoralizing nature of the therapy process.

Bad MRI

I had bad reaction to an MRI last week.  I reacted to the contrast dye injection.  I had a headache and fever for a couple days.  It took a lot out of me.  I was bedridden.

Gallows humor

If you ever see me flapping my arms and making fart noises, it means someone close to me has died.  I am inappropriate.

I’ve been feeling very down since the MRI.

New Lemon Flavor

In some sign of normalcy, I cooked Hoppin Hot Sauce, trying out a new Meyer lemon ingredient that my co-packer sent.  The results are promising.

Plants are growing in my garden – see you next time

garden

Welcome to Episode 4 of the What’s The Matter With Me? Podcast

In this episode, I continue to think about how to ask for help with the shower safety changes that I need, do some physical therapy, and finally pick up the phone and ask for help.

Recap Ep. 3

Recap – last episode was about asking for help. It was hard to record because I didn’t know that’s what I needed to do before I began recording.  I figured out while I was on talking about it that so many of my great friends and family would be happy to help, and that all I had to do was ask.

7 habits

A listener, my only listener at that point, wrote in to say that accepting help builds bonds.  It’s one of the Seven Habits Of Highly Effective People.  That’s a famous book that I avoided because my Mom owned it.  I’m grown up enough to admit that it’s probably got a lot tof good information.

Never quit

I can’t quit, even if I make bad episodes.  Last episode, I said “Dude,” revealing that I am a Californian from the 80s.  It’s OK with me to let you know that.  “Woe is me,” I meant.

Therapy is hard

They ask you to do the things that are hard for you.  I’m putting off using it by working on the podcast.

Phone call

A good resolution to the last episode was that I called my stepfather to talk about what I needed in the shower, and that was enough to get things moving in the right direction.

Parking Lot

Welcome to the What’s The Matter With Me? Podcast Episode 3: Asking for Help

Recap – last episode we talked about being in control of my emotions.

Episode 3 revolves around asking for help to install shower handles so I can get in and out of the shower.

The are a lot of complicated feelings that go with that.  I need help, but I don’t want to ask, and I especially don’t want to ask my Mom for help.

Transcript

JOHN HOPPIN: Back to Business, episode three. Last episode, we talked about stuff in the garden. I got a new kneeling bench. I told the story about falling. I talked about inability to control my emotions. On the weekend, and an update on that; I had some success by meditating, setting the meditation right off. That was my therapist’s idea. He was like, “Meditate.” I did it, and it helped. It helped me deal with the challenges I faced throughout the day, really.

More challenges is: mom. I don’t know how your mom is; my mom is my mom. I’m trying to install handles in the upstairs bathroom. She has a house in Santa Rosa, and I’m trying to install handles in the upstairs bathroom, and a kind of leverage bar that will help me get in and out of the shower, in Santa Rosa, and it’s kind of hard dealing with my mom; trying to ask for something and not wanting to be a pain, but needed some help and then having conflicting feelings about that, really. How do I feel? I got to ask my mom, “I need to install this stuff,” and I can’t even install it. Because I can’t work a drill. So instead of just installing my own handles, I have to ask my mom, really, to ask my stepfather, my child’s grandfather to install handles. The bar thing, luckily, is a suction thing. It works with tension. Tension, they call it. Not suction. It’s probably easier.

So I have to ask my mom, “Mom, can you ask,” my stepfather, “To install these handles.” Anyway, asking your mom for help to install accessibility stuff, really, it’s asking my stepfather to do it; it’s kind of humiliating, dude. I just want to do it myself. All I have to do is put two small handles, and I can’t work the screwdriver. Sucks.

But anyway, shout out to my stepfather, Dave, who probably is going to end up doing that, and will do that for me. He’s got my back. So that is something to be so thankful for. You know what I mean? He’ll do it. I need it. He’ll help me out. Or, I’ll have to ask one of my friends to do it, which would probably be better than my stepfather, but I’m embarrassed to do that. I’m embarrassed to ask my friends, and tell them, “Hey, I can’t work a screwdriver.” Because I could probably ask one of my friends and another. I could probably ask any of them to do it, but I’m to embarrassed.

Man, thinking about … I was trying to think about like, “Who could I ask to do it?” And then I realized I could ask almost any dude I know to give me a hand, and they would. Shoutouts to my bros. That is a good feeling, I guess.

So I have my radio show tomorrow. This guy, Ashwin Batish, is a sitar boogie guy. Google Ashwin Batish Bombay Boogie, and there’s a radio Montreal, french radio interviewer, and he plays live, and it’s rad. It’s in 1987 in Montreal, I think. Check it out. I ordered a thing called a … But he’s not playing on my show. Oh, sad. That’s a sad turnaround on that. Ashwin Batish ends up not playing on my show, it got canceled yesterday because of a family emergency he has. So god bless, I wish him well.

I ordered a TheraBand FlexBar. It’s a yellow spongy thing. And people use it for tennis elbow rehab. It helps you flex your arm and your hand in certain ways, and grip and turn. And it also massage. So my occupational therapist, Julie, who I kept calling Dr. Julie, I think, in the last couple of episodes, and she is not a doctor. And we always laugh about that, so I’m taking her down a peg right here on the air. Occupational therapist, Julie, not a doctor.

Although we discussed that maybe, I think she would be a great doctor. I ordered a rack for my coffee roaster, and also for my kids’ shoes and Naomi’s shoes and stuff, because they need more room. I wear the same shoes, because I have a brace I wear almost every day. Sometimes I change them out. I’m going to go to my friend’s wedding in July, and I’m going to wear actual shoes. Not dress shoes. They’re not formal shoes, because it’s a country wedding and I’m wearing a straw hat.

But anyhow, I bet I will look fly. I bet everyone will. I bet, especially, my friends who are getting married. They’re fly types.

Episode three in the books.

hardscaping

Trying

What’s The Matter With Me? is a podcast about Multiple Sclerosis and many other things.  In this episode, it’s the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision.

Droll

It’s the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.

Occupational Therapist Julie

I went to Stanford to visit the occupational therapist.

We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment.

I got on a tangent and had to flush the segment down the toilet. I start over again.

I ask Julie if I should be on disability. She explains how it could help me, and my business..  I tell her the blanket analogy – that MS is a heavy blanket. I tell her about how I believe in trying, and that is why I made this podcast: to try.

Transcript

JOHN HOPPIN: What’s the Matter With Me? Episode one. What is the matter with me? My name is John. I’m disabled. I’m developing my disability consciousness, so I made this podcast. I have multiple sclerosis, and I walk with a cane, and I do all this stuff. And so I made this podcast to say I have multiple sclerosis, check out my podcast. Man, what’s the matter with me? They always say Ronald Reagan was a great speaker because he opened with a joke, and so I … I mean, I wish I had a joke to tell about that. Ronald Reagan, he was President twice.

What’s the matter with me today? I’m going to go see Dr. Julie at Stanford. And after that at 7:30 is the radio station meeting, but I’m not going to be on the radio tomorrow because it is the month of mayhem, and my compatriot Droll is going to be on the air tomorrow from 10:00 am to 2:00 pm. Check it out at KFJC.org.

So anyway, Dr. Julie, she is an occupational therapist. We talk a lot about … I run a hot sauce business, and we talk … I’m trying to manufacture my hot sauce, so I can sell it all up and down the west coast. But right now, I just make it with my mom and very small batches. And I have a couple clients, and people like it; but I need to make a lot more of it in order to really make a go at it. I’m having trouble, because in the recipe, I use Meyer lemons, and those are kind of a special type of lemon. It has a certain taste, though. Makes the hot sauce taste good. So that’s why I use it. And then there’s also a certain type of chile, where I use a special kind. This guy imports it in Texas. I buy it from him. It’s whole. In order to make a big batch, I need a big amount of ground powder.

What’s the matter with me? So, episode one. We are getting to the harder things. I started this podcast to kind of share what I’m going through, which is that I have multiple sclerosis and it’s brought me to be a disabled person. I’ve been singled out for the fact I’m disabled. I’ve had lots of people come up to me and say things to me, and some of them are great, and some of them aren’t so great. And I have all kinds of experiences, same thing: some are great and some aren’t so great. So I started this podcast to just share that.

And so today, I’m going to go see Dr. Julie at Stanford. She’s an occupational therapist, and we’ll talk about what I need to get out of life. What I want to ask her today is, should I be on disability? This is something certain people say I should be on … I’m disabled. I can’t work. Some people say I shouldn’t be on disability, because if I can avoid it … But the thing is, it’s like working my wife to the bone. She has all the pressure. I need to come up with some cash.

I have this business, but like I just shared with you, it’s in the R&D mode. It’s going to take some time. At this point, it’s just barely cracking four figures. It’s going to … It needs to be up there. I want to sell … My goal is to sell one million cases a year, and my staff is going to consist of people who’ve been through the prison system, veterans who are suffering, and other disabled people like me. That’s who’s going to be a big component of my workforce that’s going to be doing this project with me. I want my disabled people with me, because I believe in doing things rather than not. I guess that’s the simplest distillation.

As a disabled person, being disabled is like wearing a blanket. I was telling my wife; it’s like a heavy blanket with no edges. You can’t get out of the blanket. And in multiple sclerosis; I think it’s probably similar in other things, the blanket just gets heavier and heavier. So you could lay there under this heavy blanket, or you could try and make something, and try and get it out of the blanket. You can’t really ever get out of the blanket and really see it out of the blanket, but you can work and do something. That’s what I believe.

So that’s why I made this podcast. That’s what’s the matter with me, and episode one.