Still

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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