My name is John, I’m 38, husband, father to 2, I have multiple sclerosis, and I created the What’s The Matter With Me? podcast to share what I’m going through.

I believe in using the transformative power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Every man is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of interactions in the public sphere that create new connections in the community.

I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a 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.

If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.

still

Season 2, Episode 8: The Disability Trap

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WTMWM? – S2, E8: The Disability Trap

Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 8: The Disability Trap

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 (MS), so I made this podcast to share what I’m going through.

The Whats The Matter With Me? Podcast 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.

Find us on Facebook and please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Episode 7 Recap

Last episode, I took MS medicine by infusion and it knocked me out and burned me up, complained about reddit, new brace, I can zip up my own fly, for now.

Shoutouts

Shout out to Patrick– it turns out he found out about this podcast from the time I posted it on Reddit so in fact even though I thought it was disappointing, I got through to people even though I didn’t see it at first. Patrick is a young father with MS like me. He told me that he was inspired by What’s the Matter With Me? and started his own Ms blog on Facebook called Taking It Day By Day- Patrick’s MS Story. Check it out and many thanks and shout outs to Patrick.

I’m just going to keep it rollin’ with the shout outs so shoutouts to Rocky. I know she listens because she responds to the episodes in text messages. She is a librarian and she is trying to get the American Library Association to divest from fossil fuels. She has started to reach out to divestment experts to help amplify her argument from an environmental as well as a financial viewpoint. It’s very persuasive and I will put a link to it in the post on this episode on whatsthematterwithme.org. Shoutouts and thanks for listening Rocky. Click here to listen to her interview.

The Disability Trap

I watched an interesting short film called The Disability Trap by Jason DaSilva, the director of When I Walk, probably the foremost disabled filmmaker. He wrote an op ed in New York Times and as part of it included The Disability Trap, which raised some important questions. Before I get to that I noticed that the movie is about 13 minutes long, I think MS people make stuff that is about 13 minutes long and that’s about right I guess. That’s how I do it too. The film tells how in some states like New York, where Jason lives, the state provides one-on-one in-home care, so he live at home, be more independent and studies show he will have a longer life expectancy. His son lives in Texas, and in order for Jason to move there he will have to live in a home and he will lose a considerable amount of Independence and freedom. The point of his op-ed is that this creates an impossible choice whereby in order to gain proximity to his son he must relinquish his life as he knows it. It’s from the New York Times June 24th edition, called The Disability Trap by Jason DaSilva.

John’s Birthday / Swimming

It is so important tor me to be present as a father to my son, and I can’t imagine what Jason is going through. It’s John John’s 5th birthday tomorrow and we are going to go to Santa Rosa to be with my parents. We will all go swimming in the pool. I might try and get into the pool it’s kind of hard and I stubbed my toes a lot but I think I will try. I hope it is not too dangerous. Maybe I will try getting in on the deep end. I hope I can still swim.

Hoppin Hot Sauce Movie

I made the Hoppin Hot Sauce movie where I spoke about how I have MS but I didn’t let it stop me from cooking. I put it on my Youtube channel, and my customer email, where this month it was the top item. I was nervous about it, but the response has been uniformly positive. The gears are spinning and I am working on a few more videos already. Hoppin Hot Sauce is good sauce and social entrepreneurship and I think there’s something very positive about that. I’m going to keep working at it.

Tomato Salad

I’m starting to get tomatoes off the tomato plants and their are pretty ugly but they are delicious. I hope we get a lot more. We put them in salad with oil and vinegar, basil and salt.

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garden2018

Season 2, Episode 7: Wacky Wednesday

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WTMWM? – S2, E7: Wacky Wednesday

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 7: Wacky Wednesday
  • 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 (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast 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.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shout-outs to Liz who is a DJ at the radio station where I host a radio show on Thursdays.

Infusion

I had my primary MS medicine infusion a few days ago. They hooked me with the IV,  gave me steroids, also knocked me out. I came home and had to make food which was hard to put together because I was wiped out. I need to call a car or something. after infusion i’m toasted. The next morning I woke at 4:30 AM, my torso burning up. Nauseated. Maybe my appointment time was too late in the afternoon, and I got more or less hungover.

/r/MultipleSclerosis fail

I posted about this podcast in the multiple sclerosis subreddit.  I asked people to post their favorite multiple sclerosis podcasts.I was looking for inspiration– I want to find material that I can relate to.  I got several responses but the first stood out.  
So here’s what I asked: “Please post your favorite multiple sclerosis podcast here! It can be a single episode or a series- I’m looking for inspiration.
For my part, I’m a 38 year old husband and father, small business owner, and I have MS. I’m just trying to make it.
I started my own podcast because I couldn’t find podcasts that featured somebody speaking from our perspective. It’s called What’s The Matter With Me? and you can find it on Apple Podcasts or at whatsthematterwithme.org
What do you all listen to? Thanks, John”
From TornaydoTornahdo: “I would never listen to a podcast about MS. I can’t think of anything more depressing than listening to people talk about that in my free time. I already have enough problems related to it. Having it be a presence in my fun/pop culture/whatever time isn’t ideal.  I know other people do want stuff like that, so I hope you get a lot of listeners.”
I think this person was being honest and trying to look at it from both sides, and I appreciate that.  Nevertheless, it’s always rough to get your first response a strong NO. Unfortunately, as the responses came in, I didn’t find much inspiration: no patient-produced material, just information about What Is MS? and like that.  Informative, but not inspirational. It was kind of a let-down– People always talk about Reddit like it can change the world, So maybe I set my expectations a little too high. There is probably another way to go about it that will yield better results.  Because I don’t think this podcast is depressing. I think it’s the story of trying to overcome obstacles. I am a disabled person and because of that, my voice is marginalized. I gain power through the use of my voice to tell my story. Listeners, some with MS and others without, continuously reach out to report that listening has inspired them, offered a new perspective or made them feel better.  I am thankful for that.

Time To Replace My Ankle-Foot Orthotoic

I need a new brace – the straps keep coming open, it’s hard to keep them fastened because the brace is past it’s lifespan.  It’s a carbon fiber brace, and when they are new, they feel very springy but as they get a few years old, the life seems to go out of them.  It’s got dings and scratches, and one of these is developing into a crack. I have an appointment to get it looked at in a couple of weeks.

Can you give me a hand?

I had my fly unzipped on Wacky Wednesday at my children’s school. I must have had it open the whole time I was there, I went to the bathroom and thought, Maybe the reason no one says anything about it is they don’t want me to ask them to help me zip it up.

No Necktie

John John was going to wear a necktie but kiboshed it at the last minute. I can’t blame him, he wasn’t getting paid by employer or judged by a higher power

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Season 2, Episode 6: Awaker

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WTMWM? – S2, E6: Awaker

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 6: Awaker
  • 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 (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast 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.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts to my Mom

Mom listened to the podcast, and she told me, “I listened to your pod.”  Isn’t it funny how parents do that?  They get creative with the lingo.  She used to say, Intendo instead of Nintendo, and nowadays she does the same thing with text messages.  She calls them tweets.  “Tweet me,” shje’ll say.  Or, “I tweeted you.  Didn’t you get my tweet?”  Shoutouts to Mom, love you Mom.  Email me using the contact form on the site, and I’ll shout you out.

Recap

Writhing In Pain, Crunked Up or Crunked Out?, Coaches jackets, living in a hair gel air bubble, making music with my old compadre, accessible instruments, its good to be alive.  It’s all in the last episode, check it out.

Drool

“AAA!!” John John shouted as I bent over to brush his teeth, pointing frantically.  I tried to look where he was pointing, but he moved whenever I turned my head to look.  “Papa, you’re drooling,” he said, and laughed.  I looked in the mirror, he was right, I had drool on my chin.  The way things have been going, it was the least of my problems, but its a phobia I have — to become a vegetable.  It’s just fear — my drooling scared John John when I was brushing his teeth, it is what it is.  If I can keep my mouth shut and stay focused, I’ll be all right. 

Through the fence

My most major fall since the last episode occurred in the backyard while I was gardening. First off, I am unhurt.  I fell through the fence when I was trimming the garrya elliptica wavyleaf silktassel bushes. Completely through the fence, I ended up in my neighbor Tim’s yard. The garrya bushes are low-growing and dense, and they were covering my feet.  I reached out a hand to steady myself on the fence, it moved and I fell right through it. Nami helped me put it back together. The posts are cracked and rotting, it seems like the next strong wind will bring it down, but then in the morning it’s still standing.

Video

I shot a video for Hoppin Hot Sauce wearing my new coaches jacket that I got screen printed in Oakland. It felt great and I think it might have looked great, fingers crossed. I read the following script:

My name is John Hoppin and I created Hoppin Hot Sauce from chiles, Meyer lemon, garlic and spices.. I’ve worked in food all my life. I put hot sauce on everything, grilled cheese, lunch leftovers. It gives it a certain Tang that I prefer.
I have multiple sclerosis and it makes it difficult to work in the kitchen environment. I didn’t let it stop me from cooking.
I made Hoppin Hot Sauce to share the taste of my table with yours. It’s all natural with no preservatives, and all good stuff inside. For people who want their food to taste the best, nothing beats Hoppin Hot Sauce.

It made me feel powerful to write and deliver those lines. I hope it will turn out, I’ll share it with you when I get it out of editing.

Less sedation

I’m on less sedation and it’s feeling pretty good to be more alert. Maybe ‘alert’ is a stretch.  I’m afraid of more pain, that the pain will wake up and rear its ugly head.  For the time being, I am relatively awaker.

Live in the present

Live in the present moment..  I had this more-or-less standard revelation listening to music on the way to the farmer’s market.  There were a lot of wonderful fruits and vegetables that deserved my attention, and there will be more next week. If I stay focused on the present, not stuck in the past, or woulda-coulda, I think it will help me be happy. 

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plants2018

Season 2, Episode 5: Pain is bearable

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WTMWM 35 – S2, E5: Pain is bearable

  • Welcome to Whats The matter with me Season 2, Episode 5: Pain is bearable
  • 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.  However, if you need medical advice, ask your healthcare provider.
  • Download The what’s the matter with Me podcast on Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shoutouts to rocky Nate and joe.

Recap

Last episode episode 4 I was in so much pain. It almost made me angry but I think it was making me crazy. I was just writhing in pain check it out it’s an interesting listen.

Writhing in pain

My last episode was kind of terrible because I was just in pain so much but this episode I can report that my pain level has downgraded from extreme pain to intense pain and maybe even bearable. Definitely bearable I’m going to put it in the bearable category and no one can stop me because it’s my podcast. It’s bearable

Crunked Out, or Up

I’m in the process of changing my trigeminal neuralgia medication. In order to do that I am currently taking both my old medication and the new medication. Since they both have a sedative effect it’s I’m very crunked out. Or crunked up I’m not sure how the direction works there

Coaches Jackets

Coaches jacket. I went to Oakland and pick them up this morning. It was very tiring because like I said I’m totally crunked up or possibly out. It was a lot of driving and I hope I don’t have to drive a lot more today

LA Look

I’m trapped in a bubble in the hair gel, because I’m overmedicated.

Making music

Joe was in my high school band. It was called okra blues and it was mostly Modeled after the Jon Spencer Blues explosion and RL Burnside. It was punk rock blues.  He took his shirt off at the catholic school.

Nowadays We Jam Together

Nowadays We Jam together and I don’t play a lot really anymore. I’ve listened a lot. My approaches different and it is more like meditation and exercising acceptance of the sounds I’m making.

Accessible keyboard

I’m using a ROLI Seaboard, an accessible keyboard with different ways of striking notes and making sound.  It’s good to have an instrument to play.

Good to be alive

It’s good to be alive. I’m grateful for my family and friends. Every day’s a new opportunity.7 things are changing with my pain situation it is evolving in the new medication seems to be starting to work.

 

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flower pathC Hoppin 2018

Season 2, Episode 4: Bring It On Or Maybe Not

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What’s The Matter With Me? Podcast – S2, E4: Bring It On Or Maybe Not

  • Hello and What’s The Matter With Me? Season 2, Episode 4.
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through.
  • What’s The Matter With Me? is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider.
  • Download The What’s The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Shoutouts

  • Shoutouts to Patrick and Nat. In the previous episode I talked about answering hoppin hot sauce fan mail was my new favorite activity. But maybe answering what’s the matter with me fan mail is even better?

Recap

  • neuro psych evaluation trippy wormhole. results later in the episode. things are blooming in the garden. hoppin hot sauce has started to exist beyond my immediate purview., out of the vicinity. various pains. shoulder has subsided somewhat.

Pain update – Trigeminal neuralgia pain, pinched nerve, back thrown out

  • My shoulder no longer keeping me up,. trigeminal neuralgia is worse. it hurts to talk, like stabbing electrical pain in my face, it is unbelievably concerning, it’s worse at night. my back hurts but its almost an after thought.

Neuro psych eval results

  • Neuropsych eval results – trouble switching from mode to mode. I score high end of average which is probably low for me. It’s hard to tell whether my brain my mouth or my motor skills are what is the problem

Pinched nerve

  • I have a pinched nerve in my neck probably resulting from some bulging vertebrae that were visible on My Last MRI.

Changing meds

  • Thinking about changing from Gabapentin

Hoppin Hot Sauce apparel

  • Coaches jacket

I Keep On Falling

  • Falling a lot. Because of my brace? Balance? Hurt my back falling in the yard and it has been aggravated by further falling.

Garden heat

  • sea daisies are turning brown

Pain

  • Bring it on, or maybe not
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WAIS

Season 2, Episode 3: Neuro Psych Eval

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What’s The Matter With Me? Podcast – S2, E3: Neuro Psych Eval

  • Hello and Welcome to Whats The matter with me? season 2, episode 3
  • 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

Shoutouts

  • Shoutouts Bob nat rocky joe . Rate it on iTunes and Facebook

Garden

  • The garden is beautiful. There are a lot of purple Asters and yellow yarrow. Birds are singing and the whole nine

Hoppin Hot Sauce continues to exist

  • I have shipped a few dozen of hoppin hot sauce orders and shipped 5 today

Pains

  • Trigeminal neuralgia – eye socket and cheek bone
  • Shoulder pain –  in my muscles and ligaments

Neuro Psych Eval

  • Neuro psych evaluation. Dr bummer. Told her about how I’m a Good person, good looking and rich — really just very blessed. Her next question, Do you suffer from delusional thoughts? We laughed.
  • Making color patterns with s. the stimulus book
  • I skipped the followup appointment to hear the results, i will have to hear them over the phone
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flyer

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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legislature

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.

 

 

 

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Still

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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