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It’s My 40th Birthday

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Welcome to the What’s The Matter With Me? Podcast, Season 3, Episode 7: It’s My 40th Birthday

Coming up in this episode: pain and anxiety, brain damage, the beauty of nature. Hanging out in the backyard, it’s my 40th birthday. I’m thankful to be here processing my emotions and symptoms. Come hang out with me.

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 the What’s The Matter With Me? 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 or 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.

In the backyard

Hi. This is John and you’re listening to the What’s The Matter With Me podcast. I know I sound chilled out, but it’s like 6:15 in the morning. I’m outside my house in the back yard. I woke up around 5:45. I was having kind of some anxiety. My body wasn’t feeling very comfortable, and I wanted to be asleep, right? It’s 5:45 in the morning. I’m like, “No I don’t want to be awake.” But you know I need to go to the gym and get some energy out. I haven’t been there since Monday. It’s been John John’s spring break this week so I’ve been busy watching him.

It’s my birthday

Now it’s my 40th birthday, okay. I’ll drop it on you like that. Today it’s Friday. It’s my 40th birthday. And I’m awake this morning, like I said, feeling anxiety, feeling pain. I’m having trigeminal neuralgia pain in my mouth when I swallow. So I’ll wake up, yawn. There’ll be spit in my mouth and I’ll swallow it and it will hurt real bad. So things complicated this morning, but it is my birthday, my 40th birthday, and I wanted to reflect on that a little bit.

Thankful

You know having MS, having trigeminal neuralgia, getting old. I mean the thing is like everything is hard. All life is suffering. We’ve always got to remember that. To be honest, it’s my 40th birthday and I’m really very thankful … for my family, for my house. Right now I’m in my back yard and it’s spring. There are so many flowers all over the place. It’s beautiful. There are some flowers in the back, they look like sunny-side-up fried eggs. I call them the fried egg flowers.

Yesterday I barbecued chicken out here. We had chicken and grilled asparagus and Nami made potato salad. So we had this meal together, the kids and our family. We ate outside yesterday because it was a little warm. It was probably about 85. So it was nice. We had a good meal, and springtime is here in the garden.

My family, they’re beautiful people. John John went to an aerospace museum yesterday and loved it. He couldn’t fly the fancy flight simulator but he could fly the biplane. I’m thankful for the family. I picked Coco up from school yesterday because Nami was off work. She was here. I picked Coco up and she goes to me, “Papa, it’s your birthday.” And you know, it’s my birthday today, not yesterday, but just that she has some concepts or cares about my birthday. It really made me happy. It touched me.

Feels like an ax chopping my soul in half

And to be out here. To be with the family. Life is beautiful. Nature is beautiful. Even though I feel this horrible pain from trigeminal neuralgia … I described it recently. It’s like an ax. Someone’s chopping my soul in half with an ax. It really hurts. And my arm is really spastic and really clawed up, and my muscle is sore, my arm is sore. It really upsets me to have one usable arm and the other one, it’s kind of not usable unless I can use it as a door stop or something. I can push on things with it, kind of.

Problems compound easily

So, you know, I’m having all this anxiety. That pain, trigeminal neuralgia pain I was talking about, that gives anxiety. You know something my therapist once told me is that when you’re feeling that kind of anxiety, it makes pain worse. You feel more upset when you’re in pain. You know it seems simple idea, right? If something is upsetting you it makes other things that are upsetting you seem more upsetting. If one thing is upsetting you and it alone, that would be that. But if one thing is upsetting you and then something else is, both things feed back off each other. So it’s important to remember that because I am going through a lot physically and it wears me down.

You know I feel really upset talking about it, but I have to bear in mind that a lot is going on and happening. So I have to stay cool really. That’s kind of what I think to myself. I’m like, “Stay cool, Hoppin, stay cool.” So I’m going to turn the page on all these upset feelings. I’m going to stay cool and remember, bear in mind, all this stuff … Being upset makes other things worse. You know if I’m upset it’s going to make my MS worse.

So I’m just going to take a deep breath for a second, and pause.

I’m going to get back to talking about the garden and my family, things that make me really thankful to have reached 40 years old. I’m really proud and I have a lot to look forward to. My kids are going to go through a lot. They’re going to grow. They’re going to have a family. That’s a whole, that’s like …, I’m too emotional. They’re going to grow and have a family. And that’s a great thing.

Animal brain damaged

Something that my neurologist told me, I have a lot of brain damage in the brain stem area. That’s like your under brain, your animal brain. So near that area damage, it can cause you to have a hard time regulating your emotions. I think anyone would have a hard time, maybe. I’m probably being a little bit hard on myself to be like, “That’s why I’m upset.” I’m upset because I’m having pain and I’m awake. Insomnia, anxiety, trigeminal neuralgia, multiple sclerosis … you know, whatever … blah, blah, blah.

I don’t need to list it out, but I’m upset for real reasons. But also I have brain damage in my brain stem and it causes me to have difficulty regulating my emotions. So if I get too angry or if I get in a confrontation, I’ll flip out. People that know me are like, “Oh, that’s why he acts like a total lunatic.” Hey, you guys, this is the secret. I have brain damage in my brain stem. I mean that sounds like a cop out, right? I mean I’ve always thought it must be because I’m a lunatic that I act this way. But it’s because I get whiffed up in the moment and I lose it. That’s with anger. They say the anger is a sword that you wield that also as you use it against your perceived enemy you also are using it against yourself. That’s a big difficulty for me.

Anyway, now I’m hanging out here in the garden and I’m starting to see, “Oh, that plant needs water,” or whatever. Stuff like that. There’s a cat on the fence. Life is good. I’m 40. And nothing like being a gardener in your garden to get your mind off everything except being a gardener. I’m looking at this plant that I planted a few months ago. It hasn’t rained for about a week. And I’m starting to be like, “Does that plant need water?”

One of the complaining episodes

But I need to focus here on the What’s the Matter With Me podcast, and my 40th birthday, and thank you for listening. It’s kind of short episode. A lot of complaining. One of the complaining episodes, processing insomnia, trigeminal neuralgia, multiple sclerosis, pain, discomfort, and anxiety.

Let’s talk about the garden a little bit. I water it all by hand, and that’s a difficulty. But it’s a challenge. There’s no sprinkler. There’s just a hose. So I drag the hose around, and, obviously that’s hard because I walk with a cane. How am I going to carry a hose through the garden? Well, I get it done, but it’s complicated.

Falling in the garden

And last summer I fell a lot during the summer. Like basically every day. I had six tomato plants and four pepper plants. Something like that. And I fell a lot. They didn’t yield very much and I spent a lot of time in the really hot sun dragging the hose around. They yielded a lot. But when I was a kid my grandfather grew tomatoes. He was raised on a farm in Tennessee. So he was a farmer. He would grow tomatoes, and when it was time to harvest tomatoes … I remember it. You know I remember it through a kid’s eyes. Also that’s distorted in a way. I remember the tomatoes covering the entire countertop. He grew Roma tomatoes. He covered the entire countertop with them.

I did pretty good last year. I covered the countertop. I bet my kids got that in their eyes. But this year I haven’t planted tomatoes or peppers, and it’s kind of late to do so. And I think I’m not going to. I’m kind of sad about that because just like anyone I like a homegrown tomato. And also I have this memory of my grandfather and I feel sad that I’m not growing them. But I also feel happy that I’m not going to fall.

I fell so much. It was so hard. Because with tomatoes if you’re watering them by hand, you’ve got to get the hose around the tomatoes. You’ve got to make sure the hose doesn’t hurt the plants and you’ve got to get … It’s just too much for me. My garden is flat, thankfully, but it’s not even terrain. It’s dirt, and mulch, and piles of stuff. So it’s difficult to walk in, which is a good thing. But too much of a good thing can be a bad thing. And I fell a lot last year, so I don’t have tomatoes this year. I’m kind of sad about it but I’m going to be okay with that.

Everything in life is a trade-off. I just hope that I transmitted that tomato lust to my children and that they’ll grow tomatoes. Because it’s a good thing to grow things. We have a lot of fruit, a lot of apricots. Last night at dinner they were looking at the apricots and the figs on the fig tree. I was like, “Don’t touch them or you won’t eat them.” That’s a concept they’re trying to get, is like if you touch the tomatoes … Sorry, not tomatoes. If you mess with the apricots or the figs or any other fruit before it’s ready to be picked it won’t be good when it’s time to pick it. These are common, good sense lessons for a person to learn and to really internalize. My grandfather taught them to me so I’m trying to get the kids to know them.

Birthday indulging

Tonight I’m going to have dinner for my 40th birthday at parents’ house. They asked me what I want. I said, “Let’s barbecue.” I’m a Californian … I’m a barbecuer. People who know me know I love to barbecue. So we’ll barbecue and celebrate my 40th birthday. We already went out a couple of nights ago. Nami and I went to a nice restaurant here in San Jose, and we ate so much, and we drank so much. So I still basically feel hungover from that. It was night before last. I still feel chilled out.

Maybe that’s adding to my anxiety. Remember that saying about how when you feel bad that you can compound upon other challenges you have. So I have a lot of compounding. But the real problem is I’m hungover. I’m going to blame everything on that.

I am here

Thanks for listening to the What’s the Matter with Me? Podcast. You can find it on Apple podcasts, find it on iTunes. Wait, that’s the same thing. I have to learn that. Apple podcasts and iTunes are the same thing. Find it on WhatsTheMatterWithMe.org. You could just Google it, What’s the Matter with Me? Podcast. It won’t be that hard to find I don’t think. And if it is, you can contact me at whatsthematterwithme.org. Send me an email and be like, “I can’t find it. Are you gone?” And I’ll be like, “No. I am here.” I am here. Thank you for listening to the What’s the Matter with Me? Podcast.

Thanks for listening

Thank you for listening to the What’s The Matter With Me? Podcast. You know you can find all the past episodes, there’s like over 50 of them, on WhatsTheMatterWithMe.org and Apple Podcasts, and whatever app you use, just use it. Find the What’s The Matter With Me? Podcast.

Hoppin Hot Sauce is the best sauce in the world

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

Got to give a shout out always to the worldwide universal sponsor of the What’s The Matter With Me? Podcast, Hoppin Hot Sauce.

(singing)

It’s a movement, Hoppin Hot Sauce is a movement, check it out HoppinHotSauce.com

Thanks you for listening to the What;s the Matter With Me? Podcast S3 E7: It’s my birthday.

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Assembly

Mobility Assistance

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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!”

Hoppin Hot Sauce is a movement. Get with it, HoppinHotSauce.com.

Thank you for listening to the What’s the Matter With Me? podcast, Season 3, Episode 4, Mobility Assistance, in the books.

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plant drawings2018

Season 2, Episode 13: It’s Fall

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Welcome Whats The Matter With Me? Season 2, Episode 13: It’s Fall

  • 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.
  • Whats 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.

Last episode Recap

Antacids, Artificial intelligence thinks I want to  know what my Dad looks like, and other things I’m not asking.

Shoutouts

To Rocky, always take your hoppin hot sauce medicine. To Patrick- thanks for listening. Don’t forget to write me and I will give you a shout out even if it’s to Patrick and Rocky over and over again forever shout out y’all.

Nat- I dig your paintings we should do a trade. Email me  and I will give you a shout out free of charge.

Fall #1

I fell in the living room and hit the back of my head.  The sound in my head was very loud.  It hurt a lot.  It was right up there with my worst falls.  It was in the living room near the entrance where there ios a lot of stuff on the ground.

Fall #2

I tripped and fell in the middle of my yard when there was watering in a head to get to the chair in the corner to stand up again and it was an epic journey, scooting my butt across the yard.

New Brace From A Disabled Practitioner

I got a new brace. First time working with a disabled care provider. It was great and I told her so. She had a disability that you can see right away looking at her. It even made her work for complicated but she had hacks and workarounds just like I do. Except she was in the doctor’s chair. It was so cool. During the exam She couldn’t do one thing, so I helped her and I couldn’t do this other thing and she helped me.

No Fellowship — Creating My Own Representation

I did not receive the fellowship I applied for, but I understood that this project is about creating my own representation so, which was necessary because multiple sclerosis is often portrayed as a thief that steals the capability of those people that it infects.

I was not comfortable seeing myself as incapable because I have capability, maybe even a great capability. Why not? Either way I have decided to try and that in itself is a capability.

I am trained as an Artist – I am documenting my stories and creating my own representation

Don’t eat figs off the ground

It is the part of the Year where the Second Harvest of speaks is here and sometimes they fall off the tree and I remind myself not to eat them

My Hand Is Useless

My hand is really useless. It’s it’s in a claw most of the time sometimes my thumb goes under my index finger. At night when I’m sleeping and I wake up at 4 in the morning is the best time but I’m at Cross purposes there because it’s also the best time for being asleep. It’s hard to move around and to get up and to do anything really.

I’m really bad at that delivering hot sauce and that is a challenge now. My clients are understanding and they often give me a hand. I guess that works but it is not right for a long-term solution. If people know they have to help me that will factor in to whether or not they buy from me because it is an added cost on top of what they pay for my product.

It’s made falling more difficult because I can’t protect myself with my right arm so often time I will protect myself with my left arm and then I have right shoulder and face will hit the ground or the table or whatever I reach out to grab with my last time. I can’t block I guess. So I’m getting the crap kicked out of me in addition to having a useless arm and Claw hand.

It’s pretty tough but it’s good to say that here. Just to say my hand doesn’t work right now I’m trying to work and it’s pretty tough. That makes me feel better thank you for listening to it.

Rate it

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Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. 

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John2018

Season 2, Episode 12: Antacids

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Welcome Whats The Matter With Me? Season 2, Episode 12: Antacids

  • 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.
  • Whats 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

Last Episode Recap

  • Recap- last episode was all about trigeminal neuralgia support groups, grantwriting – writing an essay, KFJC

Shoutouts 

  • Shoutouts to rocky, she’s emailing me stuff, email me and i’ll give you a shoutout

General Confusion

General confusion and the inability to think of anything much at all last week. 

Giving up everything

I felt like giving up on Hoppin Hot Sauce. It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn’t even have a thought about that, to evaluate it. There were no brain waves.

Action

I started to question my medication., because I was feeling so bad.   Then on Thursday at the end of the day suddenly I snapped into action and begin to realize just how much I had to do. I had to pay some people and sell sauce and balance my books. I got a haircut and I’ll probably cook dinner for the family. I think it’s going to be vegetable pasta with tomatoes and grilled zucchini and roasted red bell peppers because we have all that around. And lots of Parmesan cheese. 

Antacids

On the advice of my therapist, I started taking antacids with my afternoon pills, not an empty stomach, and I saw an improvement.  I no longer question reality all afternoon.

AI Wakeup

What does my day look like? What does my dad look like? What does my d*** look like?  Why doesn’t artificial intelligence know what I need to see first thing in the morning?

Antacids over AI

In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.

Download

Download the Whats The Matter With Me? podcast on Apple podcasts and whatsthematterwithme.org

Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out.  Contact me here.

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garden2018

Season 2, Episode 11: Grantwriting

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Welcome Whats The Matter With Me? Season 2, Episode 11: Grantwriting

  • 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.
  • Whats 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.

Shoutouts

Shoutouts to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.

Last episode Recap

I interviewed free jazz legend peter brotzmann on the radio, I resigned from my radio show, I had a challenging vacation, im working on Hoppin hot sauce as usual

Trigeminal Neuralgia Haikus

Trigeminal neuralgia support group is pretty intense. People have a really hard time with the pain and it comes very hard and pretty much destroyed their life. Their status updates when they put how hard it is into a one-sentence post it is very Stark to read it.. like a haiku from hell

Grant application

I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don’t know about all that but I can tell you it was great to put together an application. I wrote some essays that really clarified why I am doing This. I’m going to share one here but before I do I want to ask that you please don’t judge me I just tried to write an essay and I’m not great or anything I’m much better at talking like I’m doing right now but anyway here it is:

Q: Why are you interested in disability advocacy? What are 1-2 issues that are important to you and why?

Too often disabled voices go unheard. We are discussed but we aren’t part of the conversation. I have always believed that direct action is the fastest way to instigate change. Our voice is marginalized, and using our voice will make it stronger.

As we tell our stories in our own voices, we create our own representation. We’re represented as living a life not worth living, wirh meager intellectual abilities, unfeeling and incapable of love; as purposeless mistakes. This distorted simplification is very unfair to say the least. To avoid it, we must take back the way we are represented. We are our own best advocates.

In 2017, I created the What’s The Matter With Me? podcast to share my experience as a 39 years old husband and father of two, small business owner with multiple sclerosis (MS). I recorded 33 episodes in Season 1, and I’m currently 9 episodes into season 2. I went online to find podcasts about MS from the patient perspective, and they were few and far between. In response, I started What’s The Matter With Me? to tell my story, so that a story like mine would be told. As I’ve produced the episodes, more and more people with disabilities have reach out to me saying how much it has meant to them. I have created a kind of feedback loop: I support others and in turn they support me. I am in greater touch with my disabled community, especially younger people dealing with disability earlier in life when expectations for robust health can be higher. We need to raise our voices in order to be heard.

KFJC Impact

Even though I resigned from my weekly radio program I am still active at kfjc,. Lst weekend I took my family to a fundraiser event at streetlight records here in San Jose and it was good to see people. And then a couple of days ago I went to the weekly meeting where I reviewed some music and recorded some scripts for production spots that we will make for the fundraiser which is coming up in October.just silly stuff asking for money but I’d like to be part of the community at kfjc which is a bunch of burnout to like music just like I do.

One of the listeners from my radio show has since joined the station. she has some disability and says that I inspired her to join. One day she called during my show and told me that she knew someone else who worked at the station and she listened to my show and she heard from her friend that I was disabled. I encouraged her to join the station because it was rewarding and it was something that a disabled person could definitely do and it was a great group, a great and supportive community So I’m very glad that she joined Kfjc and it was great to see her at the meeting.
that’s another episode in the books thank you for listening.

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Season 2, Episode 10: Monterey

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Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 10: Monterey

  • 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.
  • Whats 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 Whats The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Episode 9 Recap

Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.

Watering the garden

I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time.  It’s fixed now.

Peter Brotzmann, the Machine Gun

I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds.  He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh

No more radio gig for a while

Resigned from questionable Traditions.  It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that.  I must admit to feeling some purposeless. However …

I have a purpose, and it is

Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.

I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!

Monterey

We went to Monterey on vacation.  It was frustrating because I felt very limited by disability.

Aquarium

We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk.  I hope my kids had a good time, I did not.  It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.

Cram it in

When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.

On the cliff

I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.

Bathroom death scene

The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.

I have such a hard time on vacation because I can’t do what I used to. I need to figure out a new way.

Trigeminal Neuralgia

I’ve been going through lots of trigeminal neuralgia.  I’m switching from one medication to another.  It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms.   More about TN in S2, E6: Awaker.

Thanks for listening

Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.

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Season 2, Episode 2 “Cafeteria”

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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

Contacts

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.

Keeping track

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.

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Episode 33: A Scrap Of A Dad Is Still A Dad

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Welcome to the Season Finale

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.

The What’s The Matter With Me? Podcast is available on Apple Podcasts and whatsthematterwithme.org

Recap Episode 32

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..

Listener Mailbag

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.

DVD cover

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.

jean-dominique on the phone

Phone call

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
  • The What’s The Matter with Me? Podcast is available on Apple podcast SoundCloud what’s the matter with me. Orgy and wherever else you find it
  • That’s What’s The Matter With Me? Episode 33 in the books thank you for listening

STAY TUNED FOR SEASON 2

 

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Episode 32: Enter The Dragon

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Enter The Dragon

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.

Wahl’s Protocol

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.

New Growth

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.

Stay Tuned

Tune in to Episode 33 for a look back on Season 1 and how we’ll get ready for Season 2.

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Episode 31: Doctor Visit

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Doctor Visit

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.

Feeling 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

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.

Doctor Appointment

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.

Episode 1

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.

Droll

It’s the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.

Occupational Therapist Julie

I went to Stanford to visit the occupational therapist. We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment. I got on a tangent and had to flush the segment down the toilet. I start over again.
I ask Julie if I should be on disability. She 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.

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