Welcome to What’s The Matter With Me? Podcast Season Six, Episode 29, “Doors Of Perception.”
In this episode, the door men are at my house installing the Doors Of Perception. They are noisy, but because I’m feeling better, I don’t have to whisper anymore. I was still feeling pretty tough yesterday when I went to see the surgeon to discuss RF Rhizotomy surgery.
“If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”
William Blake, The Marriage of Heaven and Hell
Geographical shout outs
Shout outs to rocky
Shout out to Mom who reminded me that it’s been 2 and a 1/2 years since I have MVD micro vascular decompression surgery not 1-1/2
Shout outs to Doctor Shuer, who’s already operated on me twice. Isn’t that enough? We’ll see, just stay tuned..
Mom was trying to get me to be thankful for that time, and I am, but I also would appreciate my surgeon putting an end to this disorder and putting me out of pain. Trigeminal neuralgia is very painful and causes many who have it to commit suicide by how painful it is and I just don’t ever want to be in the place I was before or even being close to it.
Trigeminal neuralgia took me to the house of pain, where I went into the white hot room of pain and took a seat on the sofa of pain.
While I am thankful. I need to get this done with for my family. Shout out to Mom, she’s a Catholic and was taught to be thankful for everything in life and I kind of agree with her. I must admit I can be sympathetic to that. Because everything is here for me and I didn’t do it and I should be thankful for it- OK fine fine
Dear God, please let’s segue
I think it’s fine to call someone whatever they want to be called.
Sanleandrido, Sanlandrida, Sanleandridx.
Getting thoroughly cursed out is triggering and toxic that’s what it’s all about.
I had a nightmare that it was Thanksgiving and the butcher shops were all out of turkey.
The Cure Is: Lemons
One of my friends sent me 1 of these “they’ve cured MS in Canada” Messages and it’s totally unprovable and not linked to any study And it’s kind o,f like the MS cure Where you eat a lot of lemons. Generally I ask my family not to send me MS cure ideas that are like that. I believe in peer reviewed studies And without that you’re kind of just shooting in the dark.. So generally I ask people not to send me things that are unsupported by scientific study.
But frankly it was nice to be thought of and I told the guy I appreciate it. So how’s that for mixed messages?
I went to see the doctor earlier today but before that at 8:30am i had a CT scan so I didn’t eat breakfast.
A CT scan is way chiller than an MRI- you’re still mostly in the roam because the hole that you’re in is way bigger
In MRI, you are inside the machine- for CT, it’s not even like you’re inside something. MRI has a 50-60CM aperture. CT scan has an aperture of 75-85cm. CT is shorter and quieter.
Then we had 45 minutes between appointments so i got the peanut butter Jamba Juice quick before I met the doctor. to get calories because I didn’t have breakfast.
My doctor and I discussed RF rhizotomy: they would put me to sleep, insert a needle into my face, then wake me up, send electrical signals through the needle to verify the right nerve, and then blast it with the high frequency RF to deaden the nerve.
It’s a short procedure but its freaky. were going to schedule it and if I don’t need it I wont have it
The Story of signing the consent form and how I wrote my signature.
We talked about how it could reduce my use of pain medication.
Baby Wants To Drive
My wife and I talked about how I cant drive on my current medicine dosage. That is upsetting, it’s like I’m a baby. I want to drive, but I can barely get around my house. It’s a loss of independence. I don’t know how I wont go stir crazy.
Los Pericos Vibe
We ate at Los Pericos on East 14th St. Nami had the vegetarian burrito & I had pozole. It was pretty good. It came with radishes cabbage and onion to dump in and a lime to squeeze over everything and it came together nicely.
I used my wheelchair to order the food and to eat. it was the first time I did that. it was on a pedestrian mall on a Tuesday at lunchtime. It was mostly empty, except for a guy who muttered to himself. He would come up in volume as we dropped down. He was talking about real motherfuckers and fake motherfuckers. He sounded upset about it. in a sense he was really killing the vibe. in another sense its a free country isn’t it? one mans vibe is another mans jibe! then his friend showed up and he was a lot happier. but then they were catcalling women.
BK To The Fullest
If you woke up today and you were an adult male named Brooklyn.
Part about cursing
Sometimes I deserve to be cursed out and sometimes I don’t and when I don’t, maybe I should just walk away and hope for better next time. Perhaps I could avoid ridiculing the person trying to come at me. which is what I often do because I think I’m not afraid of confrontation.
Maybe I should just take a wait and see and find out whether it is a pattern, whether I have a toxic person on my hands. Maybe there are extenuating circumstances.
https://whatsthematterwithme.org/wp-content/uploads/2022/08/Doors-Of-Perception-1.jpg10801080Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2022-08-10 22:44:552022-12-22 22:32:04Doors Of Perception
Welcome to the What’s the Matter With Me? Podcast, Season 3, Episode 4, Mobility Assistance, in which we go on a trip to Sacramento where I finally admit to myself that I need a scooter, plus fictional characters with MS. I made some new tunes and more. Stay tuned. Check it out.
My name is John. I’m 39 years old, husband, and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis, so I made this podcast to share what I’m going through.
What’s the Matter With Me? is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcasts, from WhatsTheMatterWithMe.org, or wherever you get it.
I’m not a medical professional. Don’t take this for medical advice. If you need medical advice, ask your healthcare provider.
Shout outs: first of all, come on. What’s up? I’m nothing without a shout out. I’m a shout out machine. You put a quarter in me, I’m just like, “Shout out, shout out, shout out.” Shout outs to Patrick, and shout outs to Emma. Give me an email– Contact me on the– Give Me An Email using the contact form, and I’ll give you a shout out.
All right, recap. Recap, recapitulate, recapture and wreak havoc. Last episode, I’ve received my MS medicine by infusion. There was a reiki lady. She gave me reiki, and check it out: Season 3, Episode 3, Infusion. It’s up on WhatsTheMatterWithMe.org.
I went to Sacramento and horned in on my cousin’s life for four days. I dominated his house and mind, I’m sure. I have profound apologies, but now that I have MS, I’m working up to a trek. I can’t really travel, you know, so I’m working up to it. I want to go to the Monolithic Rock churches of Ethiopia, and I want to feed raw meat to hyenas on the end of a stick. But for right now, I go to Sacramento. It’s just two or three hours away by car. I do a lot of weird stuff. In addition to invading my cousin’s life, I visited the capitol building. I met with my assembly member, Ash Kalra, representing the 27th California Assembly District, where we live here in San Jose. We sat in his office with John John and Koko, and I like to do this where … I’m not really into politics or any … But I like to show kids things. I wanted to show them that politics is a real thing, and the government is real. Real people are involved. It was cool.
So we went in to his office, Ash Kalra’s office, and we took a picture with him. We talked with the kids about where they went to school. He was cool, and I was glad to show that to the kids. The capitol building politics is as strange as you think it is. It’s very strange. Hopefully the kids picked up on that, and they won’t become politicians, hopefully. But you know, it’s probably the other way … Everything goes wrong when you’re a parent.
We ate at Frank Fats, a Chinese restaurant, an old Chinese restaurant, in Sacramento, but it’s like a political, rubbing shoulders kind of restaurant nowadays. You can get an awesome martini, and fried wontons, weird stuff.
We ate also at Juno’s Kitchen and Deli. It’s like a casual deli, but they bake the bread in the house, and it’s kind of more refined than you expect it to be. But it’s good for the family, and it’s cool. We go there. It feels like a gem, kind of thing. They like Hoppin Hot Sauce there, and they have the bottle. So when I walked in there, they were like, “John!” You know, and I was like, “Yeah, I’m on the bottle,” you know what I mean? My name is known. Juno’s, Juno’s Café and Deli, check it out in Sacramento.
The tourist area of Sacramento has the worst name. It’s called Old Sac. I mean, for real. The central tourist area, they’re like, “Welcome to Old Sac.” You call up your friends. You’re like, “Hey, guys, let’s go hang out in Old Sac.”
McKinley Park is like this giant green space park with a duck pond in the middle, and a kids playground, a really big one. Kids wanted to go there every day. We went to Sutter’s Fort. Went to the Crocker Art Museum. It’s a cool, modern museum built around an 1870s mansion, and it has a big collection of plates, African headrests, and California works on paper, old pictures, ceramics. It’s like a mix of things. The mix of architecture with this mansion, 1870s, big mansion, beautiful flooring, parquet floors, other kinds of floor. It’s pretty amazing. And then a modern museum kind of built around it. But I had mobility issues.
After I walk for like half an hour, it starts to get hard to walk, and the pressure exerted by my AFO leg brace on my ankle and the top of my foot is too much after a while. It’s carbon fiber on bone, and eventually I can barely walk. I realize my AFO allows me to walk, but I can’t go take a walk. So I’m like hobbling through the 19th century mansion in pain, and I’m unable to move my eyes from the floor, or I’ll risk falling. And I decide, that’s when I finally capitulated. I’m like, “I’m getting a scooter.” And I told Nami, and of course, she’s very supportive.
A few years ago, I saw a rehab therapist who advised me to get a folding, portable scooter. She asked me, “Imagine a party at the end of a long path, far from the car.” Did I want to spend my energy on the path, getting there, or at the party itself? It was kind of like an easy question, but I was afraid of the answer. And I said to myself, like, “Oh, I’ll be fine. I can make it.” But I’ve gone to enough events with Hoppin Hot Sauce, or family events, school events, had enough trouble maneuvering, almost falling over, endless treks through 19th century manors. It’s true. My brace helps me walk, but not to go on a walk.
Like the AFO before it, the scooter is a choice born out of necessity that effects my appearance to the outside world, and it requires me to let go of a bit of vanity, not by my own choice. And just to write that out, to say this feels healthy. It feels good, and valuable to accept reality. Acceptance, move onward.
What about the way characters with multiple sclerosis are represented in the culture? I’ve been reading this book. I’ve been reading 2666 by Roberto Bolano. It’s a novel I selected. I picked it out because his earlier book, The Savage Detectives, was compared to Jack Kerouac, and as a kid, I always loved that. And that’s the reason why I didn’t read Savage Detectives. I was like, “I’m not going to read that. It’s kids stuff. I used to like Jack Kerouac when I was a kid, kid stuff.” But then I saw this huge book in the bookstore, 2666, at the used bookstore. And it was in good condition, hardcover, so I was like, “I’ve got to get that.” It was a good price, and I was like, “That guy was the guy who was compared to Jack Kerouac.”
Now, there’s this huge book. He’s a Chilean guy, died in 2003 at the age of 50. At the bookstore, I skimmed a few pages, and it was like one of these manifold themed books unfolding all different kind of writing. It was like Borges and Murakami. It was like a serious novel. It was a big and powerful book, with lots of different interesting stuff inside, revolving around an elusive, fictitious, elusive German author, and an unsolved and ongoing murders of women in Santa Teresa in Mexico, based on Ciudad Juarez. And I was like, “This is cool. This is weird and cool.”
In the book, a group of scholars are searching for this German author, and one of them has MS, and he’s in a wheelchair. And he goes on a trip to London from Turin. And it just says, “He had to rest after.” And I was like, “Oh, it’s fatigue. He has MS fatigue.” And so it’s like depictions of MS always interest me. I hop all over them, and read into them, and interpret them, and I’m hoping MS will get the same nuanced treatment as everything else in the book, with the same level of almost crazy care.
Here, I’m going to read another bit, where the character with MS decides not to go to Mexico.
“At the last minute, Morini decided not to travel. His ill health, he said, made it impossible. Marcel Schwob, whose health was equally fragile, had set off in 1901 on a more difficult trip to visit Stevenson’s grave on an island in the Pacific. Schwob’s trip lasted many days, first on La Ville de la Ciotat, then on the Polynesien, then on the Manapouri.
“In January 1902, he fell ill with pneumonia, and nearly died. Schwob was traveling with his Chinese manservant, Ting, who got seasick at the drop of a hat. Or maybe he got seasick only if the sea was rough. In any case, the trip was plagued by rough seas and seasickness. At one point, Schwob in bed in his stateroom, and convinced he was on the verge of death, felt someone lie down beside him. When he turned to see who the intruder was, he discovered his Oriental servant, his skin as green as grass. Only then did he realize what kind of venture he had embarked on.
“When he got to Samoa after many hardships, he didn’t visit Stevenson’s grave, partly because he was too sick, and partly because what’s the point of visiting the grave of someone who hasn’t died, Stevenson, and Schwob owed this simple revelation to his trip, lived inside him.
“Morini, who admired Schwob, or more precisely, felt a great fondness for him, thought at first that his trip to Senora could be a kind of lesser homage to the French writer, and also to the English writer whose grave the French writer had gone to visit. But when he got back to Turin, he saw that travel was beyond him, so he called his friends and lied, saying that the doctor had strictly forbidden anything of the kind. Pelletier and Espinoza accepted his explanation, and promised they would call regularly to keep him posted on the search they were undertaking, the definitive search this time.
“Norton felt somehow insulted by Morini’s decision not to go with them. They didn’t call each other again. Morini might have called Norton, but before his friends set off in their search for Archimboldi, he in his own way, like Schwob in Samoa, had already begun a voyage, a voyage that would end, not at the grave of a brave man, but in a kind of resignation, what might be called a new experience, since this wasn’t resignation in any ordinary sense of the world, or even patience, or conformity. But rather, a state of meekness, a refined and incomprehensible humility that made him cry for no reason, and in which his own image, what Morini saw as Morini, gradually and helplessly dissolved, like a river that stops being a river, or a tree that burns on the horizon, not knowing that it’s burning.”
Something cool about that, I like that, “A tree on the horizon on fire that doesn’t know that it’s burning.” That’s kind of how it is, a meek, dissolution, MS. I think there’s something … This guy is a perceptive author. There is something he knows, pretty cool.
There’s new music. I made new music. It’s pretty strange. I make it all with my left hand, because of my right hand doesn’t work. It’s kind of this weird, synthetic jazz process. So there’s a new tune called Suda. You can hear it, Soundcloud.com/john-hoppin.
Thanks for listening to Season 3, Episode 4 of the What’s the Matter With Me? podcast, Mobility Assistance. Find other episodes at Apple Podcasts, WhatstheMatterWithMe.org, or wherever you get your podcasts. The worldwide universal sponsor, Hoppin Hot Sauce, is a movement.
“Hoppin Hot Sauce, it’s the best hot sauce! Hoppin Hot Sauce, it’s the best sauce in the world!”
Welcome to the What’s The Matter With Me? Podcast, Season 2, Episode 2 “Cafeteria”
My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through.
What’s The Matter With Me? is an MS podcast and it’s also about other things I’m not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider
Download the What’s The Matter With Me? Podcast on Apple Podcasts and whatsthematterwithme.org
Shoutouts to Rocky and Pat and some other people who contacted me to say they were digging this season premiere and looking forward to more. You can contact me using the contact page.
Great new life activity
A very validating new life activity that I have is answering Hoppin Hot Sauce fan mail. I am so glad to get Hoppin Hot Sauce out in the world.
Take a seat in the cafeteria
I went to John John’s school orientation. It was in the cafeteria. I had to figure out where to sit. One of the teachers couldn’t work a microphone. They passed out a handout that listed the topics they would discuss but no useful information about them. The principal talked about rules for a long time like the uniform and punctuality. I’m very excited, I’m just traumatized having gone to school already I didn’t consider going back.
Neverending jaw pain story
I increased my dosage of Gabapentin because I was having jaw pain. It made the pain go away but it made me sleep all day. I have reduced my dosage and I feel some pain but very low on the scale like one or two out of 10. I’m not too sleepy or sedated. I’m taking 300 extra milligrams right now. A couple of days ago I was taking 900 extra milligrams. Something like that. I think I should get some guidance from the nurse.
One of the coolest things about this podcast is that when they listen to old episodes like from a year ago I can gauge how I feel now versus how I felt then and it is useful. I am doing a lot better than I was a year ago.
Recording the voiceless
I’m doing a special on KFJC about the musicologist Ian Brennan called Recording The Voiceless. He travels around the world recording prisoners, albinos, victims of genocide poverty and war. He’s recorded in Vietnam and Cambodia. Rwandan refugees. Albinos who are stigmatized and even killed for the a white color of their skin which is considered to have special properties. The albinos have a tune called “Disability is not a crime”. That’s how I got into it. The way he records voiceless people is kind of similar to the way disabled people aren’t given a voice, and I am concerned with that. I’ll play my interview with Ian on Thursday May 24th from noon to 2 p.m. Pacific Time on kfjc 89.7 FM and kfjc.Org where there will be an archive of it for 2 weeks.
Hoppin Hot Sauce is real
Hoppin Hot Sauce is real and is produced and it’s for sale at hoppinhotsauce.com. I’ll discuss it in more detail in an upcoming episode. If you end up as a customer, maybe you will end up writing me some fan mail.
Welcome to the What’s The Matter With Me? Podcast, Episode 33: A Scrap Of A Dad Is Still A Dad. It’s the NBD season finale.
My name is John, I’m 38 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis so I made this podcast to share what I’m going through. What’s The Matter With Me? is a MS podcast and it’s also about other things. I am not a medical professional and you should not take this for medical advice. If you need medical advice ask your healthcare provider.
Last episode, I meditated that social media was like the mirror scene from Enter the Dragon, the final match where Bruce Lee fights Han. They played it during setup at Lollapalooza before Smashing Pumpkins in 1995. Some listeners wrote me about the Wahls protocol. We talked about how this episode is the season finale and plans for the future. There are new plants in the garden. I am happy to say that my disability conciousness grew a lot in season 1. Stay tuned for more in season 2..
Listeners wrote in to say the podcast meant a lot to them and I want to give a shout out to those people and express thanks and gratitude. I am extremely happy and immensely gratified to provide support. Thank you for listening, reaching out, contacting me and in turn supporting me.
I’m overjoyed when listeners write me. You can contact me using the form on whatsthematterwithme.org. While you’re there, why not Subscribe to our action network.
In The Handicap Space
Another parent was parked in the handicap space on Monday. I was dropping off John John and Koko. She said she was late for work. I said that may be true, but this is space is not for convenience, it’s for access. I told her I was a parent too and that it wasn’t personal. She said again she was late for work. I told her that I thought it was for access not convenience, and that furthermore her car was in my way and creating danger for me because I have to “go off-road” with my two kids. I have hurt myself very seriously doing the same thing before. Letting it slide would have been my preference, but when she started justifying her presence in the space, I had to say something. My kids were watching.
A Scrap of a Dad
The Diving Bell and the Butterfly
The Diving Bell and the Butterfly (2007) was directed by Julian Schnabel about Jean-Dominique Bauby, played by Mathieu Almaric, who was the editor of Elle Magazine. He experienced a major stroke that left him with a case of what is often called “shut-in syndrome”. He had no way of communicating, or moving other than blinking his eye. With the help of a speech therapist, he learns to communicate using only blinking, and writes his memoir. The movie uses point of view cinematography after the stroke and scenes from the memoir are shown as flashbacks.
“Bauby assured people of an indestructible human essence inside the destructible human body.” – Mick LaSalle, San Francisco Chronicle
Fear of being shut in
Roger Ebert pointed out that Julian Schnabel has now directed three movies about artist creating in the face of obstacles. Basquiat, about a New York graffiti artist, Before Night Falls about persecuted poet Reynaldo Arenas.
Roger Ebert said he feared shut-in syndrome during his jaw surgery. MS can shut people down – I feel the same way, and this is so terrifying. I think this is why it had such an effect on me.
A Scrap Of A Dad
The film affected me most when he spoke about being a father. In one scene, he is on the beach in his wheelchair with his family. He reflects upon his inability to offer touch to his children. He is sad, but he says that even a scrap of a dad is still a dad. This greatly affected me. It made me cry.
Something I really struggle with is accepting my limitations in the context of fatherhood. Ultimately, a father is a father. All of them have limitations. As children we look up to our parents. One of the most difficult things is to accept that I have limitations and I am a father. Because I want to fight for my child and I’m worried that I won’t be able to – that I will lose the fight and I won’t be able to get what I need to get for John John. As always when you say it out loud it ends up sounding kind of ridiculous. Because I know I can definitely win that fight. Turning obstacles into strengths is the name of the game around here.
Long-Awaited Upgrade, NBD Season Finale
I’m going to get a new computer. It’s actually being shipped to me right now. I will need to set it up once it gets here. I need to put the old episodes online. Once I get that straight I’m coming back for season 2. Stay tuned!
I’m John Hoppin my email address is John at Hoppin world.com
https://whatsthematterwithme.org/wp-content/uploads/2018/02/the-diving-bell-and-the-butterfly-2007-still.jpg3251000Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2018-02-28 00:37:072018-04-11 19:22:18Episode 33: A Scrap Of A Dad Is Still A Dad
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.
I bought Asics Gel Nimbus shoes with no-tie shoelaces and they are working out for me. They are black Asics running shoes with white soles.They look pretty much like regular shoes but the laces are made of elastic so they function more like slip-on shoes. They are kind of stretchy to move in and it takes some getting used to. At first I felt self-conscious wearing them but now I like the way they look. They ran me $160 on Zappos which is pricier than I’m used to but the shoe is a lot easier to use than New Balance 574 Classics which run around $75. They are so much easier to get on and off, and that saves a lot of time and energy, things in short supply.
Last Tuesday I got my infusion of rituximab which is my primary multiple sclerosis medication. My appointment was for 1:30 p.m. but I had to take Benadryl and Solu-Medrol as precursors. Because it was the afternoon and I was taking powerful steroids like Solu-Medrol, I had trouble sleeping that night.
Rituximab is a prophylactic-type medication and I don’t usually feel a difference right away. I think it is helping me but I am continuing to have multiple sclerosis. It is not healing me for sure. It’s hard to tell, maybe it is protecting me from getting worse. That is a hard situation for multiple sclerosis patients like myself, because you can’t tell whether your medication is working or not.
I’m getting older for sure and that is no easy ride. So there are challenges for everyone always across the board. I have a lot on my plate and I have to stay focused. I’m glad rituximab infusion isn’t causing me any major problems.
Talk less, act more
Remember last episode I told you that my New Year’s resolution was: “Talk less, act more.” I spoke about wanting to get my brand out there. Well, things are happening, and fast! It’s exciting.
Hoppin Hot Sauce will take part in the the Winter Fancy Foods Show as a part of KitchenTown‘s Incubator Alley booth at Moscone Center on Tuesday, January 23. I have been given an opportunity to jump-start my brand, to move from prototypes to orders, and to make my brand real. The time line is very tight and showtime is 8 days away. It is taking all my time and fatigue is tough to manage. I am intimidated by my workload and I need support to avoid getting into an emergency. I am reaching out- it is working. Letting people know about the challenge I face is getting them on my side. I need the discipline to delegate and manage properly.
Baby chives are growing in the winter garden. I can find peace and hope in the natural cycle of renewal and the good, right energy of growing plants.
Pre-history throwback Episode 3
Episode 3 revolves around having to ask for help, and the complicated feelings that go with that. I need help, but I don’t want to ask. It’s cool to hear old episodes, because of slight differences in the way I approach my disability. Nowadays, I feel a lot less hemming and hawing asking for help. This podcast has given me the strength to ask for help, and to be comfortable with myself. That is a good thing.
Last episode of What’s The Matter With Me? Episode 27 wasn’t very focused and I could have explained myself and foregrounded what is going on with my Multiple Sclerosis disability more effectively. The title of this podcast is What’s The Matter With Me? after all. I resolve to run things a little more by-the-book this year. For this episode, at least.
Crowd outside Cafe Oto in Dalston, East London
Last episode, I reviewed Marshall Allen’s Volcano Quartet CD Volcano Swing, a live performance at the BBC in London, where he was in town for three nights at Cafe Oto. Listener Chris lives there and wrote in to let me know about the location, in Dalston, East London, and some live shows he had seen there. It sounds groovy and I hope to check it out myself someday.
Never give up
I can have a bad episode. A terrible episode. Ghastly. But I won’t give up or cede an inch in any direction.
I discussed in Episode 25 as well as Episode 4 that I won’t give up. The pressure to give in and let go of the rope and drown in my disability is extreme. Multiple sclerosis is suffocating and pervasive. I have been dumped and it felt very bad — I bet that anybody having a hard time with something feels the same.
I called my neurologist to request help with tapering down Gabapentin, they said I’d get a call-back in 24-48 hours, but they called me back in about an hour. I was concerned because I had adjusting my own dosage without any guidance, which is bad practice. The nurse told me that my dosages had been fine, and outlined the boundaries for my pain meds. My dosage is back to normal, and I am not in pain.
No-tie Shoelaces and shoelace replacements
I’ve bit the bullet and decided to get rid of my laced shoes. I’ve got some no-tie shoelaces which turn my shoe into slip-ons. They’re working OK but my shoe feels like it might fall off. I’m glad to be done with shoelaces because they came untied and I wouldn’t retie them. I’ve got some shoelace replacements in the mail. I’ll go over them in an upcoming episode.
Disability Visibility Project
Disabilty Visibility Project Alice Wong icon
Disability Visibility Project is a platform for creating, sharing, and amplifying disabled voices created by disabled activist Alice Wong. I said in Episode 25 that in 2018 I would bring new voices to the podcast and the Disability Visibility Project is part of that effort.
Interrupting the Uninterruptible
I hosted the Blues Collective with Jack Tar from 10am to 2pm on KFJC yesterday,. For the first hour, Jack plays the music and runs the mixing board while I sit below in the interview area. At 11, we switch places, and I run the board and he is below on the mic. We do it again at noon and at one.
While it was my time to run the board, I played the same song twice. I put my foot on the wrong place and unplugged whata the engineer told me was the “Uninterruptible Power Supply” — it turned off the CD players, the lights — pretty much the entire station! I ferlt like I lacked focus or was fatigued, and I messed up the show.
Everybody feels that way sometimes. “Uninterruptible”? All I had to do was unplug it.
New Year’s Resolution
Talk less, act more. This podcast is a bit of both. Don’t think too hard about it.
https://whatsthematterwithme.org/wp-content/uploads/2018/01/IMG_20171227_084108_366.jpg14791479Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2018-01-03 21:37:552018-01-08 18:51:40#28: New Year
As my limitations from multiple sclerosis increase, I’ve had to get comfortable asking for assistance. Asking for and accepting help is one of the secrets of effective people. Or so I’m told.
Winter rolls on. I continue to produce content and work on the site daily. Being with family and experiencing multiple sclerosis or disability can be difficult to manage, and pressure only increases during the holiday.
I am reviewing Marshall Allen Volcano Quartet’s CD Volcano Swing. Marshall Allen was part of the Sun Ra Arkestra and this band is a continuation of that. They were in London in 2011 when a volcano exploded in Iceland, grounding all flights. The band took a three-day residency at Cafe Oto in North London.
They stopped by the BBC Radio to promote the gig and recorded this CD. At the end of the CD there is a live interview and Marshall Allen reveals that he was a member of the Sun Ra Arkestra trapped in Seattle when Mount Saint Helens exploded in 1984. Pretty awesome, it makes it clear that a musicians life is always about getting that next gig in line.
It is cold in the garden and there was light frosting a couple of times this week
I’ve got a new blog
People in wheelchairs are judged and face cruel realities
Marshall Allen Volcano Quartet “Volcano Swing” CD review
Throwback Episode 4 “Help”
The holidays are almost over — just New Year’s. Hopefully I’ll hike somewhere good.
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