I read a script I wrote. We went to a wedding in Boonville.
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.
What’s The Matter With Me? Podcast, Episode 8: “Big Week”
My name is John, I’m 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I’m going through.
It was very hot, and now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it’s cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standards. Anyway episode 7 check it out.
Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let’s go.
Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scan can see.
Then we took a trip through my brain, it was kind of cool. My doctor was like, “Okay let’s look at your MRI. This is how it works top down.” He starts going through the images, wow.
We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That’s like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem.
We’ve decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I’m going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs.
The studies on rituximab are 18 months long. I haven’t reached that time yet so we’re going to continue my treatment, even though obviously I’m not healed and I’m still experiencing walking swallowing and thinking problems, among other things.
I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I’m stronger now.
Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It’s good!
AFO: Ankle-foot Orthotic
But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.
My name is John, I have MS, I’m 38 years old and I started this podcast to share what I’m going through.
Recap Episode 6
Episode 6: “Overwhelmed” was short but impactful the way short things can often be. Like Mike Tyson said, “Everybody has a plan, until they get hit in the mouth.”
Last episode was basically nothing but a long recap, and then I got distracted telling how I made tomato sauce. I gave up and I just stopped the whole thing after like two and a half minutes.
It’s very hot right now
It’s hot outside. I fell down yesterday in my garden. My thoughts bubble up through my mind like my mind is full of mud, like a primordial ooze and my thoughts bubble up through it. They come very slow, I’m like, “me hungry.” It’s like that.
I feel some fatigue from Uhthoff’s effect, which was discovered in the 19th century by a German neurologist who discovered that people with MS feel bad when they’re in the sun. I totally agree with this.
Too much argument
I’ve been having a lot of arguments with my wife. I’m super short-tempered. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday and today, Wednesday, even though I saw her for only 5 minutes this morning I managed to get upset with her.
Being a salamander
It’s so hot I just don’t move. We call it being a salamander.I try and sit there and do as little as possible.
Josh is baking
My friend Josh is talking to me about baking bread and reallystimulating. I used to make a lot of bread. I’m in the hot sauce business, but I thought about making bread and coffee and I still think about it. I love making bread and growing plants. I’m a gardener, you know it’s all like making bread, growing your family it’s all the same having a garden, pruning a plant. So it is stimulating to hear that Josh has been baking bread.
Dinner with Margarita
One time I went to dinner with my friend Margarita. She was the bartender at Casanova in the Mission on Valencia Street and across the street is this Mexican spot Puerto Alegre. They really had kinda Tex-Mex, it wasn’t high on the list for Mexican places but they served a blended margarita in pitchers and when I was in my twenties, I would just wonder, how many pitchers did I drink?
So I went over there with Margarita, I was in town from New York where I was living in Brooklyn at the time, I was visiting town. I looked up Margarita and we headed over to Puerto Allegre, and Margarita is a Mission bartender, she’s been a bartender at many bars in the mission for a long time, like 20-something years, and she knew everybody. When we went to Puerto Allegre, she knew the waiter, and he said, “Oh hey Chad Robertson is over there you know those Tartine bread guys?” Actually he said, “You know those Tartine Bakery guys? But I knew them as Tartine Bread guys because they had a book about how to make bread that I would obsessively follow in my Brooklyn apartment.
It was an amazing moment, Chad Robertson sitting across and Margarita there, and I had one of those moments in my life, where I totally chickened out. I didn’t get up and say, “Oh my goodness Chad Robertson I have been baking your bread every day but I am quite an amateur and I bet you have so much to say, so interesting, I’m so glad to meet you,” – no, I did none of those things, none of that. I stayed in the corner and I was like, “oh cool.”
Tell your hero
It haunts me to this day. So it’s good to say in this podcast. One of the things that’s what’s the matter with me is I regret not meeting Chad Robertson and the other Bakers from Tartine Bakery. It was 2008 at the time and this was very interesting stuff. Nothing happened, because I chickened out.
Don’t do that, is my advice. If your hero is sitting across from you, and somebody asks if you want to meet them, you should say, “Yes, I want to meet them right now.” Tell them how much they mean to you and tell them they’re your hero. I wish I had told Chad Robertson that.
In Episode 6 I get overwhelmed and hang up the headphones in the middle of the episode. On the one hand, it’s a pretty terrible episode because of that, but on the other hand, it is good to know that I can feel bad and recover. I certainly don’t feel this way anymore. It’s hard to slur your words on the mic.
Books / Can’t do what your parents do
A listener wrote in to correct me about some books that I touched on in the last episode and I took this opportunity to set the record straight. Tony Robbins wrote Awaken the Giant Within. Dale Carnegie wrote How To Win Friends and Influence People. Steven R. Covey wrote that 7 Habits of Highly Effective People.
My Mom had these books and that’s why I avoided them. I was a childish child. They probably contain a lot of good information.
I feel all right. I don’t have to go to the doctor.
I made tomato sauce with 5 tomatoes that I grew. I have a hard time explaining how I made it. It gets hard for me to talk, hard to say “5 of them”. I’m slurring my words. I get frustrated and hang up my headphones. I’m feeling pretty low, after all.
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.
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.
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
Plants are growing in my garden – see you next time
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.