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:

reddit

Welcome to Whats The Matter With Me? Season 2, Episode 15: Misadventures in r/MultipleSclerosis

In this episode, I head to the r/MultipleSclerosis subreddit for support, and get mixed results.  Is my message insulting or inspiring?  It depends on who you ask.

  • 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

I had a booth at the Harvest Festival, i went to a glamorous wedding in LA. Check it out on whatsthematterwithme.org

r/MultipleSclerosis Thread

I posted the last episode on Reddit and I had an interesting response. I’ll just read it for you and then we can talk about it

The post was called, “We can achieve what we set our minds to, we just might have to do it a bit differently.”  Underneath that there is a picture of The Hoppin Hot Sauce booth at the Harvest Festival.
The caption reads, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. I believe that us MS warriors can do whatever we put our minds to, and I think it is a good thing to push against the limitations MS puts in front of us.”

Excerpted from What’s The Matter With Me Podcast Season 2, Episode 14: Harvest Festival

Hoppin Hot Sauce went to the Harvest Festival at Marshall Cottle Park in San Jose. We set up a booth with bottles, posters, easels, myself and my wife passing out samples.. My goals were #1- to represent the brand and #2- to sell some sauce. We did well.

It was 5 hours of talking, very tiring and I slept the whole next day. Next time I will be sure there are two people with me, not just me. I am no good to fold a popup canopy no matter how easy it is. i made a video about it and put it on our youtube channel.

Check out the full episode at whatsthematterwithme.org, or listen at Apple Podcasts or stitcher.

R

I ended it, “We can achieve what we set our minds to, we just might have to do it a bit differently,”

Discussion… Things Get Interesting

The first comment was “Yeah, I get what you’re saying, but the truth is there are many people with MS that can’t just push through and this message is kind of insulting for them.”

I replied, “I appreciate your perspective, thank you for sharing it. I didn’t mean insult anyone. I started the podcast as a way to take charge of my own representation, to create a positive image of someone who is affected by multiple sclerosis but is attempting to enact positive change in their life regardless of the limitations.”

The response, “No worries! Just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.”

And another person responds, “Thank you for posting. These were my thoughts exactly. Your running a marathon with MS is my getting out of bed.”

Another, “Congrats on your business.
Many here are much further along in our MS journeys.
Do what you can while you can.”

Somebody chimed in to buy some hot sauce, we did the deal.

And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here, and if it goes to a good cause, even better! You’re a shining light man, a testament to never stop pursuing your dreams, no matter what looks you in the face and says “bet you can’t.”
Wishing you all the best.”

That last response picks me up a little. It’s from a young person, a 29 year old.

People Say You Can’t Accomplish What You Want To

There is a lot of information about MS saying that you can’t do what you want to do. That you will have disappointment if you try. When I got diagnosed, I didn’t accept that.

Everything is finite For everybody. We’re all here on Earth and none of us is getting out alive. I think you should use what you got while you got it and that goes for everyone.

No Offense

Some of the comments on this thread made me feel sad. First of all I don’t mean to insult anyone.

There Is A Place For Each Of Us

I think we all should try as hard as we can, and that’s why we’re here on this planet. I think everyone has different abilities regardless of whether they have MS or if they’re tall or short or whatever. I can’t dunk a basketball. if I want to be involved with basketball I have to work in the front office or as a coach. I am not going to make the team. but if I love basketball I can find a way to be involved, to make it my life even.

I want to make that clear regardless of our abilities we can follow our passion and try to find fulfillment, which for me is fulfillment itself.

I made this podcast to encourage others to try , not to compare myself to others.

I Felt Judged

I felt a little bit judged. I have had Ms for 20 years and it’s not an easy time.
I peed my pants a bunch of times. I feel like a total complainer but I’m not even started I have so many other problems related to Ms. I could go on and on.

No Spring Chicken

I’ve had Ms for 20 years. I did not appreciate having people tell me I’m at the beginning of my MS Journey. I’ve got a long way to go but I’m no spring chicken.

Thanks for listening

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

Welcome to Whats The Matter With Me? Season 2, Episode 14: Harvest & Wedding

  • 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

I got a new brace from a disabled provider; I am a creative person and for me that means I must take charge of my own representation in order to be who I imagine; Hoppin Hot Sauce is advancing, and I’m getting more disabled and simple things are getting harder.

Shoutouts

Shoutouts to Rocky- always listening; Kyle fromTwo Disabled Dudes podcast, to my wife who worked hard at the Harvest Festival and every other day too. Email me and I will give you a shout out free of charge.

Off The Air

I’ve been off the air for a few weeks, I took Hoppin Hot Sauce to a Harvest Fair. I’ve started a
Hoppin Hot Sauce Youtube channel, and I went on vacation to a wedding in Malibu. let’s get into it.

Harvest Festival

We went to the Harvest Festival at Marshall Cottle Park in San Jose, organized by San Jose Made, a local organizer of maker events and craft fairs. We set up a booth for Hoppin Hot Sauce, with bottles, poster easels, and myself and my wife passing out samples.. My goals were #1- to represent the brand and #2- to sell some sauce. We did well. It was 5 hours of talking, very tiring and I slept the whole next day. Next time I will be sure there are two people with me, not just me. I am no good to fold a popup canopy no matter how easy it is. i made a video about it and put it on the youtube channel.

YouTube Channel

I started the Hoppin Hot Sauce youtube channel. I made two videos: the zipa, and the harvest fair recap. i’ve been directing a lot of my energy that way, learning software i haven’t used in 15 years, learning about putting it online. I like it because I can tell my brand’s story, speaking directly to the customer, and also say things that are positive representations of disabled people.

Malibu

I went to malibu for a beautiful wedding under a big palm tree at a glamorous house overlooking the ocean. they were my wife’s oldest friends, they had grown up scampering over the fence to each other’s house in 1980s southern california.

Creating New Products

I’m working on some new products for Hoppin Hot Sauce , one is a spicy salad dressing which seems crazy but people often remark to me that they put it on salad.
when it was time to make lunch today i cubed up some leftover tritip, tossed it with arugula in a bowl, and put spicy salad dressing on it, some walnuts and raisins, and it was pretty good. I’m in mad scientist mode: I’ve got some ideas, and I’ll keep going. I’m also doubting myself constantly like always. The struggle is to move forward and to be comfortable with the unknown. i must always remember- move onwards.

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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