What’s The Matter With Me? Podcast Episode 10
Purpose — Ep. 9 Recap — John John Sick — Ballgame Fiasco — BBQ — Crying, Pressure — Rose Trimming
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.
What’s The Matter With Me? Podcast Episode 10
Purpose — Ep. 9 Recap — John John Sick — Ballgame Fiasco — BBQ — Crying, Pressure — Rose Trimming
click for transcript
We left, we went to a beautiful wedding in Boonville. They had an oyster bar and I ate there with a couple friends. That was a really nice activity. The food was wonderful. The wedding was beautiful. One of the brides wore a leather wedding dress made by Valentino. The wedding had caviar on a runcible spoon and a fine Italian wine at the meal.
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!
But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.
What’s the Matter With Me? Episode 8.
Yeah. It’s “What’s the Matter With Me?” Episode 8. My name is John. I’m 38 years old. I have MS. I made this podcast to share what I’m going through.
Recap episode 7, 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. And I also told the story of being afraid of Chad Robertson, being 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’s Chad Robertson. You want to meet him?” 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 standard. Anyway, Episode 7. Check it out. Last Tuesday, I got my haircut, my beard shaved, lined up. Elvis at the barber shop 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 big annual check-up, and we reviewed my MRI, and I’m 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 scanner 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.” He is like, “This is how it works, top-down.” He starts going through the images. Wow.
We took a trip through my brain. My doctor noted my cerebellum is pretty clean. That’s like the top of my brain. The big brainy part. But my brain stem has a lot of lesions, and they’re old lesions. They affect my ability to walk and swallow and get up and balance and talk, actually.
All the stuff, I know this stuff because I experience it, but it was interesting to learn that it’s caused by lesions in my brain stem. We decided to continue my treatment, which currently is rituximab, that I take in a four-hour infusion every six months. We were all shocked to learn I was about six weeks late for my rituximab infusion. I guess it fell off the table. We scheduled it up. I’m going to have an infusion on Friday, in a couple days, scheduled last minute. They hooked me up. Stanford shout-out.
The studies on rituximab are 18 months long. The study’s in. 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 swallowing, walking, and thinking problems, among other things. I told my doctor about this podcast. I told them to check it out. He was pretty stoked, actually. I told him that I do this for my own therapy, to get better, which is why I do this. I share this story because it helps me, makes me stronger to do so. I love sharing. Boom! I’m stronger now.
Then on Wednesday, Wednesday, next day, I got a new ankle-foot orthotic, which helps me walk and not sprain my ankle, have balance and stuff. It’s good. But it was kind of a mixed bag. So I wore the new ankle-foot orthotic. They call it an “AFO.” I wore the new AFO on Wednesday, and it’s not quite the right fit. It’s too tight on my ankle, and it caused a very severe pinching, shooting, piercing nerve pain that is too much to ignore. So I haven’t worn it since I got it because I wore it for a few hours, I started having pain. I was like, “No more of this.” And I need to go back and have the orthotician, Miguel, do some adjustments before I can wear it again, but it’s a new brace, and it’s clean, and it looks better than my old one, and while I was in the orthotics place, they fixed up my old brace to give new straps on it. It looks less janky.
You know, just imagine if you had to wear a shoe every day. It would get janky after a couple years. What janky means is, you know, it just … Look it up, man. So hook me up with that. I’ve got to give a big shout-out to Miguel at the orthotics spot near Menlo Park. They hooked me up with a new look brace. Even though the new one isn’t quite right yet, the old one looked so much better. Thank you, Miguel.
Then on Thursday was my radio show. I looked over the playlists. I played a lot of very questionable music from other time periods like the late ’80s and early ’90s, in which we had a different view of world music. Like anthropology had a different goal. It was like, “We’re in this music. Listen to it.” And they kind of changed it in a way that I think today they wouldn’t allow. They got their hands, like Peter Gabriel and people, got involved with music. They did something awesome, and I love playing it, but it’s questionable.
It was very questionable and complicated, not resolved, all the things I enjoy very much, though. The show was good. Then I went to talk therapy after my show, and we talked about poverty pretty much the whole time. My therapist had been to a conference in Sacramento, and he rode his mountain bicycle through Sacramento, and he saw so many homeless people sleeping on the ground with their bodies pressed to the cement, in like 110-degree heat.
And right now, I’m reading Paul Collier, The Bottom Billion. The theory of The Bottom Billion is that there are one billion people being left out of the developing world. And it’s causing problems for our world, the developed world. For example, the people, there are people in Nigeria and Kenya, failing states, and in Afghanistan and Somalia. So it’s not quite a place. It’s like Africa plus, he describes it.
Basically, generally, he says that we have beautiful nature. We have invented technology, and we have law that makes things fair. So nature, plus technology, plus regulation equals prosperity. And, you know, if you don’t have these three things working together, you can have plunder and starvation. If you don’t think about it, if you don’t have laws, then you just have plunder. People take what they can. And if you have stupid laws getting in the way of the wonderful technology we’ve made, you’ll have starvation because there’s too many people in the world.
And on Sunday, it was my wife’s 40th birthday, my beautiful wife. And we have a bocce ball place in Fremont. There was a brunch buffet and bocce ball. It was good to see everybody. A lot of friends, kids running around. I loved it. Some friends I hadn’t seen in a year and their kids, and my wife looked beautiful, captivating, as always, on her 40th birthday. I’m a lucky man. I love her, and we have a strong bond.
Yesterday was the Fourth of July, and we barbecued hamburgers and hot dogs and vegetables, and my wife made some cole slaw, and everything was wonderful and beautiful. The garden looks great right now. My wife had a birthday party, and conversations made note because of social media, you don’t see people as often, and I got self-conscious. I started thinking, “Oh, am I shocking because I’m disabled and I have a cane?” And I don’t really feature that in my newsfeed.
But the point of what they’re saying is probably that it was good to see people because it was. That’s “What’s the Matter with Me?” Check it out.
Yo, next time!
My name is John, I have MS, I’m 38 years old and I started this podcast to share what I’m going through.
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 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.
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.
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.
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.
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.”
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.
What’s The Matter With Me? episode seven. What’s The Matter With Me? episode seven. My name is John. I have MS. I’m 38 years old. I started this podcast to just share what I’m going through.
Let’s recap episode six. Episode six was a short one, but impactful. The way short things can often be, like Mike Tyson said about impact, he said, “Everybody has a plan until they get hit in the mouth.” last episode was basically nothing but a recap, a long recap, and then I got distracted while I was explaining how I made tomato sauce and I gave up and I just stopped the whole thing after it like two and a half minutes.
It’s very hot right now. It’s hot outside. I fell down yesterday in my garden and my thoughts bubble up through my mind like my mind is full of mud and like a primordial ooze and my thoughts bubble up through that. So they come very slow. I’m like, “Me hungry.” It’s like that and it’s a fatigue and they call it Uhthoff’s effect. It was discovered in the 19th century by a German neurologist and I don’t really want to talk further about that, but you figure it out, and people with MS feel bad when they’re in the sun and I totally agree with that.
I’ve been having a lot of arguments with my wife. I’m super short tempered. I’m a jerk, I think, and argued with my wife on Friday, Saturday. Okay, first of all, today is Wednesday. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday, and today, even though I already saw her for only five minutes this morning, I managed to get upset with her. It’s so hot. I just don’t move. We call it being a salamander, like I just sit there and do as little as possible.
My friend Josh has been talking to me a lot about bread and really stimulating me. I used to make a lot of bread. I’m in the hot sauce business, but I thought about making bread and coffee. I still think about it. I really love making bread and growing things. I’m a gardener, you know. So making bread and having a family, it’s all the same, having a garden, pruning up plants. So it’s stimulating to hear that Josh is making bread. So that one time at Puerto Alegre, I was at dinner with my friend Margarita. She was the bartender at Casanova over in the Mission on 16th street and right across the street is this Mexican spot, Puerto Alegre. They really had kind of Mexican as the neighborhood goes. It’s not like a high on the list for Mexican food, but they serve a blended margarita in pitchers.
When I was in my twenties, I would just… How many pitchers did I drink? So I went over there with Margarita. I was in town from New York actually. I was living in Brooklyn at the time, but I was visiting town. I saw Margarita. We headed over there Puerto Alegre and Margarita is like a Mission bartender. She’s been a bartender in many bars in the Mission for a long time, like 20 something years and so she knows everybody. So we went over to Puerto Alegre, she knew the waiter and the waiter goes, “Oh, hey. Chad Robertson’s 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 bake bread that I would obsessively follow in my Brooklyn apartment.
So it was like this amazing moment, Chad Robertson sitting across and Margarita there. This is one of those moments in my life where I totally chickened out. I didn’t get up and go, “Oh my goodness, Chad Robertson. I’ve been baking your bread every day. I think I am quite an amateur and I bet you have so much to say and so interesting. I’m so glad to meet.” No, I said none of that. I stayed in the corner and I was like, “Oh, cool.” 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?, I regret not meeting Chad Robertson and the other bakers form Tartine Bakery, probably the most… I mean, this was 2008 at the time. So this is interesting stuff, nothing happened because I chickened out.
So don’t do that. If your hero is sitting across and somehow they’re like, “Hey, do you want to this guy?” You should be like, “Yes, I want to meet that guy right now,” and tell them how much they mean to you and tell them that they’re your hero. I wish I had told Chad Robertson that. The bread, I go to Tartine Bakery, every time I’m in the city, I have a Hoppin Hot Sauce account, shout outs Hawker Fare Holy Mountain, the bar upstairs, they got fried chicken. You can get Hoppin Hot Sauce to put on your fried chicken. I bet it’s good. Shout outs to Holy mountain on Valencia and 18th, between 17th and 18th, I think it is. Anyway, when I’m in town dropping off hot sauce orders over there, I always go to Tartine bread, pick something up.
So proud to be able to bring back our croissant or whatever for my family, like I’m a traveling salesman, have this wonderful merchant pleasure of San Francisco. I’m happy about it. I didn’t get up and say how much I appreciate Tartine Bread. But anyway, I still go there and stand in line and pay good green bucks for some that good quiches and pastries and gougère and all kinds of good stuff they make there. Anyways, it’s making me want it right now, like this is become an ad. Anyway, that’s what happens when you regret things. All of a sudden you’re making an ad you didn’t mean to make. What’s The Matter With Me? episode seven.
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.
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.
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 – 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.
JOHN HOPPIN: What’s The Matter With Me? Podcast, Episode five. Yeah. What’s The Matter With Me,? episode five, back to business. Not really back to business. I’ll get to that later. Last episode, let’s recap. I talked about I wasn’t going to quit doing this podcast no matter what. I admitted that I was a product of the eighties California life. I was born in… I’m a Californian, Okay? I said, “Dude.” I say, “Dude.” I admitted it, and we talked about therapy’s hard. They make you do things that you can’t really do. That’s why it’s therapy. It’s demoralizing, but you’ve got to do it and it gets easier. That’s the cool part about therapy. I got to admit something. I had a bad reaction to an MRI last week. It was really difficult. If you don’t know MRI machines, it’s a big giant thing that you get your head stuck into this hole with light coming out.
It’s creepy. It’s like a science fiction movie. You stick your head inside this giant machine and it scans your head, and actually they sucked me further into this machine and they scanned my spinal column, and that’s even worse. It’s like a punishing noise concert where you get stuffed in the amplifier. You can’t move for 45 minutes, an hour and a half. You can Google “what does the MRI sound like,” and you can get some idea. I’ve learned to fall asleep during this thing because I think my body shuts down to avoid the experience, and sometimes I snore too much and it messes up the scan, and they have to stop doing it and redo some parts, and it takes longer because I snore so much, because it’s terrible. They inject me with contrast dye to see if there are any bleeding lesions in my brain and brainstem, and to tell whether I’m having disease activity or not, because if there’s stuff happening live, that means I’m undergoing neurological degeneration.
The name of the game, I guess. I had the MRI on Wednesday, and I had a headache that night, and I started to get a fever above a hundred degrees. Got to 102 until Sunday morning, it broke. And it made all my symptoms worse. I fell down a lot, had to lay in bed all day, and I couldn’t move, and I have a really painful zit on my ass. And I stressed out a lot. It was very stressful, and I gave myself a hemorrhoid even, which is rare, which is ironic, because I have a radio show and my DJ name is Hemroid the Leader, but I came up with that name when I was 14 and I didn’t know a thing about a hemorrhoid.
And this is kind of joking, I guess. I get nervous. If you ever see me making fart noise and flapping my arms, you know somebody very close to me has died. I try and distract with stupid sense of humor to cover up how bad I’m feeling. And I couldn’t really do anything this whole week. I couldn’t turn. I was in bed, it was hard for me to sit up, turn over. It was hard, and it made my wife scared, and she cried by herself, man. And that kills me because she doesn’t deserve that kind of thing, but there’s nothing I could do about it
Any way. Yesterday… I’m still recuperating. Yesterday I made hot sauce all by myself. My co-packer sent me a new Meyer lemon juice to try in my recipe. So, I made a batch yesterday. I still haven’t tasted it. I’ll taste it today. Anyway, I wanted to leave you with this idea that citrus plants are growing in my garden, and that’s a really cool thing. I have a Yuzu tree, little one. It’s about five feet tall, but it added about a foot in the past week, and I have a Meyer lemon tree about two feet tall. We’ll see where it goes. So, another episode in the books, maybe episode five. It’s 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 – 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.
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.
JOHN HOPPIN: Yeah!! Welcome back to the What’s The Matter With Me? Program, podcast. I’ve made four episodes, so I feel like I can call it a program, a podcast. I could really call it anything I want. A message for peace to change the universe in seven minutes or so.
Last episode, episode three, we’ve talked about having trouble asking for help, receiving help and not wanting to be a pain, but also needing something and having to do it with my family and just having a hard time. And I’ve realized, on the mic, I could ask my friends for help and it’d be no problem. But the whole episode was really … I made it in a rush, so I had that on my back, while I was on the mic. But also, I had trouble … I had to really talk it out in the episode, that I needed to ask someone for help and having trouble doing that. So that’s what we talked about.
I got an email. I only sent it to one person. I almost quit the podcast because episode three was so hard. Man, it’s hard to ask for help. And then I had a hard time really enunciating it. I didn’t know, when I started the podcast, that what I had to do was ask for help and communicate clearly about it. Anyway, I sent it to one person. She wrote me back and she said long ago, she had read How To Make Friends And Influence People. That’s a famous book by Tony Robbins, and it says in there accepting help builds bonds.
And so if somebody says, “Hey, can I help you,” you say, “Hey, yeah, you can help me.” And when they do, you accept the help by you saying, “You know what? That was so helpful. Thank you for helping me.” So it builds a kind of shared experience, I think. And I could see that. So thank you for hipping me to this super famous book that I think my mom had. So on principle, I could not bring myself to read it, because it was something that belonged to my parents. And everything they think is wrong. Right? At least … Anyway, I’ll move on from that; my parents. I love them, and I am no longer an adolescent, and I think that How To Make Friends And Influence People probably has good information in it.
I almost quit the podcast last episode, and I need to figure out how to ask for help. But also when my podcast gets tough, I can’t quit. I got to roll with the punches. I can make a bad episode. I can say a bad word. I can say a horrible thing. In fact, in the last episode I said, “Dude,” to express a kind of internal angst that I had. I said, “Dude,” and this existential thing came over me. “Dude,” I said. And I really revealed that I am from California and I was raised in the ’80s. Dude. I meant, woe is me. Okay? You understand. And I’m not quitting. Just because I said dude and revealed … You can know that. That’s fine.
I got the TheraBand FlexBar, and I can’t bring myself to use it. In fact, recording this episode is avoiding using it, because the thing is PT (physical therapt) and occupational therapy is hard. They make you do things that are difficult for you, because that is what you need to work on. But when you use a new therapy device for the first few times, it’s really disheartening because you can barely use it. You can barely even perform the motions. At least I can barely perform the motions that they’re asking me to do. They’re like, “Twist your arm in this way,” and it’s really hard. And that’s why I am doing therapy for those movements. But anyway, it’s a learning curve. It’s a steep learning curve in therapy. And so I’ve watered my yard, I am recording this podcast all to put off having to use this TheraBand FlexBar for 15 minutes. So it’s nice to say that out, because I can overcome that. That’s silly.
A great resolution of the last episode, I was afraid to … I was having this struggle asking for help from my mom and in reality, my stepdad, Dave was going to have to take care of it. He was gonna fall to him. So you know what? I just called him on the phone and we talked it out and it was all good. And so we increased understanding and everything good. So with that to say, What’s The Matter With Me?, Episode four in the books. I’m gonna give it to somebody. Thank you to everyone who’ve listened to the last episode or any other episode. And I guess that’s What’s The Matter With Me?, Episode four in the books, that’s word.
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.
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.
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.