What’s The Matter With Me? Podcast

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. I made this podcast to share what I’m going through.

Episodes:

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.

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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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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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