I rode my wheelchair to some recent doctor appts before I came off meds- being a chair user demands that you be a fierce squeaky wheel, and that isn’t feasible for many- disabled or not. The system needs reform
https://whatsthematterwithme.org/wp-content/uploads/2022/10/doctors-admit-1.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2022-10-20 20:13:392022-12-22 17:31:03Doctors Admit They Don’t Want Patients With Disabilities
Agnes Martin legal ID for KFJC- rules for legal identification
I saw a couple of people at the supermarket. She had one leg- He did not appear to be disabled- They were punks- They both had jean jackets- He had a black net back ballcap- She wore one Doc Marten- she drove and kept a folding wheelchair behind the driver’s seat- I regret not meeting them
I made the choriço, white beans, and kale- I used pinto beans & Goulart’s chorizo
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Her talk centers around the idea that most people don’t see invisible disabilities
What matters is not how other people react to me, but how I present myself . I control what I can control. As ability changes, what you can control probably also changes
The frustration of becoming older and having your opinion be drowned out by a bunch of younger people’s opinions. Being disabled is similar in that your opinion is drowned out by more able bodied people’s
I heard Noam Chomsky’s podcast “Anarchism“- Noam Chomsky has a gravelly voice
https://whatsthematterwithme.org/wp-content/uploads/2022/02/confronting-the-invisible.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2022-02-17 00:03:412022-12-22 22:41:54Confronting The Invisible
https://whatsthematterwithme.org/wp-content/uploads/2021/08/Teeth-Knocked-Out-2.jpg25602560Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2021-08-26 17:58:392021-09-28 17:19:00Teeth Knocked Out
Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming
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 (MS), so I made this podcast to share what I’m going through
The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.
Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting.
Shoutouts to Eric who told me he’d been listening to my pod. Eric lives in Sacramento so he was digging the Sacramento episode. Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy.
Fall Down Seven Times, Stand Up Eight
Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to “it’s not whether you win or lose, but how you play the game.” It’s different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.
Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn’t search for things on the internet. Certainly sometimes it’s plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record.
On John John’s 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn’t be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.
When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. “I wanted to get down on the ground and then go into the pool,” I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn’t feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.
When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.
I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment.
In this episode, I tell all about the last scene in Enter the Dragon and how it connects to my experience going to Lollapalooza in 1994, the Wahl’s protocol, and the upcoming Season Finale in Episode 33. Inspired by playing Episode 1 in the last episode, I compare where I am then and now.
Episode 31 Recap
Last episode, Yoko was here. She in Tokyo now, but things continue to happen to me, so let’s talk about them. I fell out of the shower. I saw my MS doctor and we discussed my recovery, and I told him the blanket analogy about how MS is like being trapped under a blanket that can be very heavy at times. From the never-before-heard ancient history, I played Episode 1, about a visit to the occupational therapist, challenges with hot sauce manufacturing, and the desire to share my disabled experience both good and bad. I wonder aloud, should I be on disability? I told the blanket analogy to my occupational therapist. I resolve to try and make something out of crisis.
Enter The 36 Echo Chambers
The echo chamber of social media is like the final scene of the great Bruce Lee movie Enter the Dragon where he fights Han with all the mirrors.
When I went to Lollapalooza in 1994 before Smashing Pumpkins came out they played this scene.
I went to Lollapalooza see the Beastie Boys, and I thought Parliament was especially memorable because they had a guy dressed as a baby. Bootsy Collins was very far out. Cypress Hills was there, and Guided By Voices too, but I wasn’t hip enough to be up on that yet. I was fifteen, and I remember being confused.
Listeners wrote in on the website and the Facebook page to ask if I knew about Dr. Terry Wahl’s protocol, which is a dietary approach to fighting multiple sclerosis.
One of the few things that seems to really affect how I am feeling is what I’m eating. Because of this, I try to cook as much as I can myself using minimally processed ingredients. This way I know more about what is going in to my body, so I can easily make changes and modify my approach.
Episode 33 Will Be the Season 1 Finale
The final episode of the season will be the next episode, Episode 33. I’m going to take a pause for a long-overdue upgrade to my computer and audio equipment. In advance of the Season 2 Premiere, I’m going to put season 1 back online. I’m already speaking to different people and making efforts to expand my network, so I can bring new voices and perspectives to the podcast in Season 2. Expanding my vision will increase my podcast’s Disability Consciousness, grow understanding and make our community stronger.
Last week the landscaper was here and we planted new plants in the garden, cut some old ones back, and retired some others. New arrivals include red snapdragon, mexican sage. Everything is looking great in the garden and getting ready for Spring.
Differences from Then to Now
Listening to last episode, I was struck by how different things were in Episode 1 in comparison to the present time. In Episode 1, I wonder about getting disability. I applied for disability and received it in Episode 20, five months later. I got my ankle-foot orthotic (AFO) brace in episode 1, but it took until Episode 8, two months later, before I could wear it without too much pain. Even though it still hurts, now I wear it every day. I’m looking into getting a scooter, so I can increase my range and go farther. The best difference is that I feel better and more positive.
Tune in to Episode 33 for a look back on Season 1 and how we’ll get ready for Season 2.
https://whatsthematterwithme.org/wp-content/uploads/2018/02/salviamexicana.jpg870870Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2018-02-14 01:05:222018-02-14 01:23:35Episode 32: Enter The Dragon
In this episode my wife’s mom was visiting, I fall out of the shower, I visit the my doctor at the Stanford multiple sclerosis clinic, and play Episode 1 which is a really validating experience, because many of the themes still resonate.
Episode 30 Recap
Last episode, I exhibited at the Winter Fancy Food Show which was a big step forward for my business. Fulfillment, sales and following up arer ongoing. Getting it together was a lot of work and I experienced some cognitive slowness as a result, and in the episode I told a little story about that. I played Episode 2 in which I shared my intention to get better.
My wife’s mom Yoko just flew back to Tokyo after staying with us here in San Jose for a couple weeks, and while she was here she told me that I looked better. She said that I seemed sharper and more with it and better in my eyes. I guess I did get better, because I feel better, like I am recovering and getting better. Thanks for listening to my podcast, because it helps and supports me.
I fell out of the shower covered in soap. I dropped the soapy puff, and some soap got on the ground and flew out of the shower. Somehow, I emerged unscathed.
My doctor said that my current MS medication was probably working OK enough not to change it, that my past medication probably hadn’t worked, which led me to experience greater symptoms and lose functionality. He said he thought that my disease activity could be too microscopic to detect, and that was how nothing showed up on my MRI.
Good To Be Young
He told me that it is good I am young, because I had time to heal. I told him the blanket analogy that I use to understand MS: that it is like being under a blanket with no edges, impossible to escape. Sometimes heavy and other times lighter, you are always under the blanket.
Without further ado, it’s time to go back to the beginning: Episode 1. Only a few people ever got this, over e-mail. 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.
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 showed me how it could help me. I got approved for disability in Episode 20 and I went through further feelings about it in Episode 21. Improbably, I told her the blanket analogy! I told her about how I believe in trying.
Going for it
It was great to hear so many familiar themes: the struggle, endeavoring to try, and cultivating positive healing intentions. I’m very happy with the way things are going.
My name is John, I’m 38 years old, husband and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I’m going through.
Episode 30 of the What’s The Matter With Me? podcast revolves around promoting my brand at a trade show as a disabled entrepreneur with MS.
It was really fun and a major step forward for my business. Check out the episode for more.
Welcome to the What’s The Matter With Me? Podcast Episode 30: “Disabled Entrepreneur.” My name is John. I’m 38 years old, husband and father of two, small business owner, radio DJ, podcaster. And I have MS. I made this podcast to share what I’m going through.
Recap last episode. I was talking about shoelaces, and some listeners wrote me back on the What’s The Matter With Me? Podcast Facebook page. That was cool. Thanks for hitting me up. I’m going to check out your suggestions. And then steroids. I took my MS drug Rituxan, and I had to take steroids. We had a little discussion about MS drug fatality risk. I talked about that I was going to the Winter Fancy Food Show. We’ll talk about it in a minute. It was cool. And then I played episode 3, the throwback episode. Check whatsthematterwithme.org.
I went to the Winter Fancy Food Show yesterday. It was a massive deal for Hoppin Hot Sauce first and foremost. But it was a big physical challenge for me as a person with MS. I had a lot of anxiety about it, leading up to it. I was also just doing a lot of work, so it was pretty stressful. I’m glad it’s over. I’m still decompressing. It was just yesterday. In fact, I’m kind of still in work mode. I’m sending invoices and filing stuff and getting ready to reach out again. So I guess it never ends, but Winter Fancy Food Show was great. We were set up in a row of young entrepreneurs. The guy on the right to me made a bunch of different kinds of hummus and interesting … he was Persian, interesting Persian products.
The partners on the other side were a man and a woman, and they made cookies out of tofu production secondary stream products. Which means stuff that’s usually a byproduct or a throwaway product. They used … they made it into flour, like some residue from soybean into flour. They wanted to make tortillas and all kinds of other bread products. But they make at this time cookies. That was cool to be next to them.
There were a lot of attendees walking by, thousands, throughout the day. We were in between Moscone North and South, kind of at the entrance of the hall in this kind of corridor, outside the elevator. Anyway, it had lots of people. It was a good location, because many people passed by and you could get them to sample the products. And so I’m a natural hawker. I’m like, “Hey, you.” Make eyes at people. They love me. I say stupid things. I’m great if you like a stupid hawker. I’m bad if you’re, like, wanting a highbrow afternoon. I’m not going to give it to you. I’m like to people … I’m like, “Hey, you know. I think you should probably try Hoppin Hot Sauce. It’ll change you.”
I just say … I think other people don’t say weird enough stuff, or they say boring thing. “Would you like to try?” I didn’t want to do that. I mean, how could I say that? I’m not that kind of guy. “Would you like to try a sample? Sample?” No, no. No. I’m just like, “Hoppin Hot Sauce will change you.” You know what I mean? If I don’t get them the first time, I’ll just be a little firmer. I didn’t hector or harangue anyone. I made a note beforehand, “Do not harass anyone walking by the way you know that you are just liable to do. No potshots. Highbrow only. Keep it clean.” Yeah, I did it. It was good.
There were some folks there, though. You know what I mean? A big old conference in San Francisco has some people looking of some type of way at the conference. It is great. There was a guy with crabs on his pants. I was like to Brook my assistant, helper, partner that day … I turned to her. I said, “Look, I think that man has crabs.” That’s the kind of day we had. We were just sampling hot sauce, chatting it up. I met lots of people. Crabs on his pants, you know what I’m saying? He had crabs on his pants.
I had a great time. I met buyers. I met vendors, manufacturers, and a lot of consumers. I learned a lot about what they thought about the sauce. It was like a giant focus group, a very useful one, full of professionals in the industry. Many people complimented me on the taste of the sauce and the appearance of my brand, marketing and labels, and stuff like that. My cousin made the table drape. Shout outs to My Media Designer. He made the table drape for me.
Brook helped me, and so it just was a really cool thing in that I met lots of people, and made lots of contact. And I kept my energy together by sitting down, by eating snack food, by drinking water. Brook really helped me with that. That allowed me to talk to people and represent the brand and sell the product. I had to take two potty breaks, and the bathroom was really close, right across the walkway. So that was simple. Thank goodness. It was a great opportunity to show what I had, and I had something. I love to talk to people. I could do that all day.
So thanks to Brook. Thanks to Manny. Thanks to my mom. Thanks to Nami. Thanks to KitchenTown. I managed to do it. My team was strong. Thanks to Cobra Verde. We all put it together and linked and came together like Voltron. I loved it. I loved it. And we were all in the head together making all the decisions, working as a team. And we were all in the arms punching and destroying, and we were all in the finger pointing number one. We were number one. Voltron.
So I’m really glad Hoppin Hot Sauce has a new extra hot product. Development went into high gear. We worked a lot, so good things are coming in the future. So let’s see what happened. I was gone for a couple weeks, so I had a few thoughts. I checked out Rooted in Rights. It’s an organization of disabled people in Long Island led by a woman who was … a young woman who used to be on Sesame Street. I think she was on like six episodes of Sesame Streets about 10 years ago. So everybody has something in their past, and for her it’s Sesame Street. But check out this group Rooted in Rights. They have a cool website, and you can subscribe. They have … it’s like a blog network. I still have to check out the Disability Visibility Project. I need to add to it Rooted in Rights. I’m getting more into this. I’m getting more resources, because something big is coming from this.
I was working hard getting ready for the Fancy Food Show, and now I started having … brushing up close to the wall my limits where I was going to have cognitive fog, fatigue. I’m starting to get tired. So in the afternoon, I was getting really foggy. And you know, when you have that cognitive slowness, it’s like mud, it’s like muck. I’ve talked about it before. You can’t figure out what you’re doing. You wander around the house. For me, I wandered around the house flipping light switches to see if that’s what I’m supposed to be doing. And then I flipped the light switch, it’s a garbage disposal. Scared the heck out of me. That brought me … snapped me to. I’m like, “What am I doing? What am I trying to achieve?”
That’s the thing about cognitive fog. For me, I’m trying to work. I’m trying to make things happen for myself. I don’t want to be lost in a fog all day. So that’s like one of the hardest parts about MS. But if you manage and you don’t work too hard in the afternoon and you … for me, I take naps. That seems to help, but it’s a tough balancing act. I got things I’m trying to do or I want to accomplish, so it’s something I have to work with all the time.
All right. Let’s get into this. The throwback episode number 2. We’re getting close to the end. So without further ado, way back from the prehistory of What’s The Matter With Me?, this was episode 2.
Right, let’s get down to it with What’s The Matter With Me? Episode 2. I’m John. I have MS. I made this podcast to share what I’m going through. So let’s recap last episode, episode 1. 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, and my dream of employing disabled people, people who’ve been in the prison system, and veterans. And 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 can still make money and work.” 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 AM to 2:00 PM, and I do a couple of other things while I’m at it. And I’m a dad for two people. I can work. 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, like, skinned my head, and I lost a bunch of hair. I mean, it was terrible. I like, basically, headbutted the side of the house, man, and the house won. So that was tough.
So 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. So 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. So I started using that, always when I go in the garden, and it’s reduced like … I was falling every day, and it’s reduced my falls quite a lot. Just today I ordered some accessibility tools, some kind of seat. We’ll see how it works. It’s kind of like seat stander kneeler thing, which’ll 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 rose bushes, and my hand comes into a fist, like a claw, and it’s hard to get a glove on. I had to really work hard, but I did it, and I trimmed my roses. I’m happy to say my rose bushes, 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 brain stem. My doctor said, “Sometimes you’ll have 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’ve 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, like 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 helped 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. So 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 still going, it’s been throwing me off, and it’s been making me really upset. 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? Podcast Episode 2. Tune in next week. Probably I’ll email it to two people again, and no one’ll hear it. The What’s The Matter With Me? Podcast is available on Apple Podcast, and whatsthematterwithme.org. My name is John Hoppin. Episode 30 in the books. Thank you for tuning in.
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