Tag Archive for: multiple sclerosis

gary cannone interview special cover
Artist Gary Cannone was diagnosed with multiple sclerosis in 2013

Welcome to the Gary Cannone Interview Special

Gary Cannone Interview Special live and direct, in the fleshh, 100% active and happening. Thank you for tuning in to the What’s The Matter With Me? Podcast, the Godcast, the Dad bodcast. 💪🏼🎅🏼🎅🏼

Gary Cannone is a Los Angeles-based artist who was diagnosed with multiple sclerosis in 2013. His work examines being an artist with multiple sclerosis through his absurdist sense of humor. Gary grew up as an Italian-American in Chicago, and he was the drummer in a punk band, so its about that, too.

Interview 9/21/22

I had the chance to interview him and we spoke about his work, advocacy, and the experience of an artist with MS. Check it out.

cover
Doors are being installed at our house- I went to see the surgeon- I had a nightmare about Thanksgiving.

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

Shout Outs

  • 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..

The Church

  • 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

Pronouns

  • 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.

Thanksgiving nightmare

  • 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?

Hot Mops

Dr. Shuer

  •  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.

This Week’s Selfie:

selfie
“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
I was on kcbs cover
A reporter for KCBS News reached out and interviewed me about supply chain, multiple sclerosis, and Hoppin Hot Sauce.

Welcome to the What’s The Matter With Me? Podcast Season Six, Episode 21 “I was on KCBS”

The media onslaught continues!! You might remember that on last week’s episode, I made the paper here in San Leandro. A reporter for KCBS News reached out and interviewed me about supply chain, MS, and Hoppin Hot Sauce. Check it out:

Also in this week’s episode:

  • NBA Finals One-handed basketball player Hansel Emmanuel Gatorade commercial
  • My knee is feeling better and stronger, and I haven’t been taking any drugs for it because it’s basically fine. Still, I’m not walking that well over all
  • I went to Walmart to get propane tanks for the grill and it was an ordeal getting around the huge store.
  • Last week, I put my shirt in the wash and I took a sad gray t-shirt selfie instead. I apologize for appearing so dour and for the bait and switch.
  • We went to west coast craft at Fort Mason in SF. It was a pretty crowded event with lots of cool beach towels and other things. As I rolled around in my chair, I was at butt level.
  • Lamps there were $5, 6, 12, 13 & 19 hundred dollars.
  • On eBay there are a lot of cool old lamps for less than $100 – used or not, an old lamp makes new light
  • Koko’s birthday party was well attended, she felt celebrated and she got a lot of presents
  • It made John John mad with envy and reduced him to a blubbering sniveling wreck
  • As a consolation prize, he made the all star team in baseball. The game is this weekend. He’ll get a t-shirt

dall e mini made strange radios that look like like a bottle of hot sauce and a bizarre faceless all-star baseball team

  • I was interviewed on kcbs news radio
  • KCBS is so big that the weather report is basically useless. I got to give my message about being a disabled person and going for it anyways.
  • We tried a new truck, the Tacos el grullo truck in East Oakland. I had 3 al pastor tacos. The street had cars swerving to avoid potholes and Scrap metal
  • Last episode I played “Ian” from last year to end the episode.

Here’s this week’s selfie:

selfie
This week’s selfie isn’t so dour

Thank you for listening to the What’s The Matter With Me? Podcast

Catch you next time!

cover
Two years after my MVD surgery, checking in with how I’m feeling. Also: tattoo ideas, gettin’ paleolithic, different chorizos.

Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.

  • last borscht thing: Matt came over and had lunch and he said “it was the best borscht I’ve ever had.” Nami was there
  • not like he’s Lithuanian or anything.
  • I think Lithuanians eat it cold
  • Steve was talking about white borscht
  • Shout outs to Nathan Mary Butters and Tibby- thanks for the catnip hot sauce
  • Very Stable Genius is a good neck tattoo
  • I went to reddit to see if there were any posts about Epstein-Barr causation and there was only one in the Multiple Sclerosis forum and the study was met with an ambivalent reaction
  • We had white beans, kale, and dry chorizo stew. i talked to the butcher about the dry chorizo — joe: “is it chorizo, or is it choriz?”
  • “I’m in recovery again” update to my 2nd surgery in January 2020 – meds- relapses- where I’m at now
  • in Omicron isn’t milder for everyone I canceled my dental appointment but i just had it. I wore two masks for the first time
  • At the periodontist’s office all the doors are open because Covid so you hear everything- gross!
  • Thank you
  • Printer Poem
CLICK FOR TRANSCRIPT
cover
Epstein-Barr virus may be the leading cause of multiple sclerosis. I have a lot of leftover borscht.
  • The Epstein-Barr virus may be the leading cause of multiple sclerosis
  • Thank you for tuning in to the What’s The Matter With Me? Podcast
  • I do not think that having soup causes MS
  • I have a lot of leftover borscht and it’s not a bad thing
  • I feel bad for my wife who I threw in the gulag and forced to labor dicing up meat and vegetables
  • I had borscht for lunch today and I’m going to have borscht for lunch tomorrow
  • Shout outs to Ethan who’s a direct recruit from within the system, he was already connected we just had to screw him in
  • Hoppin hot sauce is the best sauce in the world

A crash course in distance learning

I recorded this message on lockdown. I can’t go anywhere due to the coronavirus pandemic and my multiple sclerosis condition. I’m in my house with my family, trying to educate my kids and keep their development on track. We’re taking a crash course in distance learning, e-learning, online education, or whatever it’s called, sooner than any of us thought.

LOCKED DOWN in California. Using my wheelchair to get around the neighborhood. Spoke to the teacher in a Zoom conference. Distance learning, ready or not. In the virtual classroom. Online learning resources from the library. Immersed in the distance learning environment overnight. I may be related to teachers. Spanish lessons.

click for transcript

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.

Read more

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.

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

… when they came to get the doctor, right away something was different. It was my first time working with a disabled care provider. It was great. I thought that was great and I told her so. I said, “Hey man, it’s cool what you’re doing. It’s cool to see someone disabled as a care provider. I really like it.” She had a disability you could see right away looking at her. It made her work more complicated, but she had hacks and workarounds just like I do, except she sat in the doctor’s chair.

CLICK FOR TRANSCRIPT

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.