My name is John,

I’m 40 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.

I created the What’s The Matter With Me? Podcast to share what I’m going through.

Portrait

I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of public interactions that create new conditions in the community.

I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.

If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.

Bsmboo

Welcome to the What’s The Matter With Me? Podcast Episode 2.

In this episode, I struggle to control my emotions due to damage in my brain stem.

What’s The Matter With Me? is a podcast about multiple sclerosios, and many other things.

Recap – should I be on disability?  My philosophy.

I said I can’t – in violation of my philosophy, which is that I generally can do things.  I can work.  This podcast is about trying, and I’m not afraid to try and succeed and achieve.  I believe that I can achieve regardless of the difficulty.

I have a lot of brain stem disease activity, and it can make staying in control of my emotions difficult. I’ve been having difficulty with my morning routine on the weekends when my family are around. I have been meditating first thing in the morning, with some success.  It provides some perspective that helps me get through the day.

Transcript

JOHN HOPPIN: What’s The Matter With Me? Episode two. All right, all right, let’s get down to it. It’s What’s The Matter With Me? Episode two. I’m John, and I have MS. I made this podcast to share what I’m going through. Let’s recap the last episode, episode one. I sent it to like two people on email, and probably maybe they listened to it. Sometime you got to start small. So, what’d we talk about last time? I have a hot sauce business. We talked about that, my dream of employing disabled people, people who’ve been in the prison system, and veterans.

We talked about going on disability. I wasn’t sure if I was going to go on disability or not. Spoiler, I talked to my doctor. She said, “You should definitely be on disability. You could still make money and work while you’re on Medicaid.” And after that, I was kind of sold. Then we talked about my philosophy about trying to do things, and that’s what this podcast is about, so I think it’ll be obvious.

Part of it, listening back, something stood out. I said that I can’t, I used the word can’t. And even worse, I said I can’t work, which is so ridiculous. I have a company. I am on the radio on KFJC every Thursday, 10:00 a.m. to 2:00 p.m. And I do a couple of other things while I’m at it, and I’m a dad for two people. I can work. And whether or not I can work, I’m going to try and work. That’s my philosophy.

So let’s talk about working in the garden. I have a garden in the backyard, California native plants. I spend a lot of time back there. I have trouble sometimes. I’ve fallen in the garden and hurt myself. One time I fell into the side of the house, and I skinned my head, and I lost a bunch of hair. I mean, it was terrible. I’d basically head-butted the side of the house, man, and the house won. So that was tough.

Well, I’ve been working a lot, doing physical therapy and balance exercises, so I don’t fall in the garden, and I always wear my brace. I have an ankle-foot orthotic brace that supports my ankle, helps me walk. My physical therapist said, “You always have to have that.” And even I have a stick, like a cane, I use for balance, got to have that. I’ve started using that always when I go in the garden, and it’s reduced… I was falling every day, and it’s reduced my falls quite a lot.

Just today, I ordered some accessibility tools, we’ll see how it works. It’s kind of like a seat-stander-kneeler thing, which will help because I have to sometimes work on plants for a long time, and I need to sit near them. Maybe they’ll help. That’s cool to invest in the accessibility tools. Today I was trimming the rosebushes, and my hand comes into a fist like a claw, and it’s hard to get a glove on. I have to really work hard, but I did it. And I trimmed my roses, and I’m happy to say my rosebushes, which my grandmother planted at this house are alive and well, so maybe Grandmother and Grandpa, Grandma and Grandpa, shout-outs.

I’ve had inability to control my emotions. I have a lot of lesions, brain lesions, in my brainstem. And my doctor said, “Sometimes you’ll have the inability to control your emotions. It’ll feel bad.” And I didn’t know what he was talking about, but I’ve started to have that. I really have a hard time on the weekends because things are different. During Monday through Friday, I get up by myself. I have a routine. And in doing that routine, I kind of get a diagnostic sense of how well I feel, and how much I can do that day. But when I can’t do it, when my wife and my kids are up making breakfast when I get up, I got to take a shower. I have a routine, and it gets me ready, so when I’m out of it, it’s causing me a lot of confusion.

The routine helps me know, “Okay, here’s where I am.” I get my breakfast going. And I have a lot of confusion, which makes me upset because I don’t know what’s going on because there’s not really… My routine’s not happening. Instead, I’m reacting, and that’s difficult for me. I’m trying to manage that because I’m totally getting bent out of shape, going nuts, and becoming really aggressive because I’m just super confused. So that’s a challenge. Every weekend day we work on it, in the morning. And it hasn’t been going well, frankly, it just sucks.

And so I’m working on it, trying to control my emotions. I need a little support and understanding, probably a lot from my family, to let me do things like make coffee and things that allow me to see how well I’m feeling, with my motor skills, but also allow me to say, “Okay, I made coffee.” And I can go sit and have coffee that I made. So it’s little things, like I go sit and have coffee and my breakfast on Monday through Friday. On the weekends, the breakfast’s still going. It’s been throwing me off, and it’s been making me really upset. And I hope that just talking about it here, and saying, “I intend to be better,” will help me get better.

So, that’s What’s The Matter With Me? Episode two. Tune in next week, probably I’ll email it to two people again, and no one will hear it, but it doesn’t matter. What’s The Matter With Me? Episode number two, 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.