What’s The Matter With Me? Podcast
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.
About Me:
John Hoppin
Creator of the What’s The Matter With Me? Podcast
I am 38 years old, a husband and father of two, and I have multiple sclerosis. I made this podcast to share what I’m going through.
I have multiple sclerosis and that affects my life and work in many ways. I am the host of the What’s The Matter With Me? Podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.
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.
Season 2, Episode 1: Sacramento
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Recap
I made 33 episodes in Season 1 and you can find them on Apple podcasts and whatsthematterwithme.org. I listened to them all and it just sounded like some guy complaining but that’s just my thing I guess so I’m going to go forward. I increased my disability Consciousness throughout Season 1 and I intend to continue in Season 2.
Contact
Many people contacted me so I want to give shout-outs to some of them – Jose, Bob, Jersey girl, Black Cat, Nat, Peggy, and Brian. Thank you for listening and take you for writing me and offering me some support. Thank you. If you want to email me, visit the Contact page.
Season 2 Gratitude
So glad to be here for Season 2, Episodes 1 I feel pretty good let’s go over what’s going on.
Piano Fall
I was walking in the living room and I slipped and hit my face on the corner of the piano. It was gnarly and it gave me swelling and a black eye.
Vacation in Sacramento
We went to Sacramento and made memories. It was difficult because we were both sick and for the record I hope I will never go on vacation as a sick person again. We ate as a nice little cafe called Juno Cafe it was good. I had spicy pasta with calabrian chiles. They had house baked bread that was very delicious. It’s very good Juno Cafe in Sacramento. That was the most vacation me moment I think. Sacramento is a great place for families. It’s a bad place if you have an allergy. The pharmacist joked with us that Sacramento was planted with all these trees like a conspiracy buy the allergy medication sellers. I thought that was kind of a crazy joke to make in the pharmacy. We stayed on a docked Riverboat called the Delta King which was a lot of fun for the kids. We were both sick so we wanted to sleep all the time. There was a train museum. Crocker Art Museum was good they had Mexican and Peruvian Artifacts.
We picked Sacramento as a place to go on vacation because it was close. And our vacation was in April so it wasn’t going to be too hot. It was chosen so that maybe we could make it, and we did and I’m glad. It was difficult cuz we were sick but we Soldier through it and we saw a lot of cool stuff and I think the kids really enjoyed themselves. On the ride back we were all tired.
Jaw pain
I have had trigeminal neuralgia since then and varied from intense pain to sleeping all day and it’s been a struggle as usual. It’s wrapping up though I hope. It’s hard to tell but I think it’s on the wane. Thanks for listening.
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.
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.
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.
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!
STAY TUNED FOR SEASON 2