https://whatsthematterwithme.org/wp-content/uploads/2019/05/walkmsmc.jpg6301200Johnhttps://whatsthematterwithme.org/wp-content/uploads/2023/01/wtmwm-green-swirl-logo-icon.pngJohn2019-05-09 19:36:372022-12-29 18:25:49Walk MS MC
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.
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.
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.
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 What’s The Matter With Me? Season two, Episode 15.
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 show 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, as your health care provider.
All right, let’s get going. What’s The Matter With Me? Episode 15. First off, let’s recap. Recap last episode, I had a booth at the Harvest Fair. And I went to a glamorous wedding in Los Angeles. Check it out. It’s on whatsthematterwithme.org.
Okay, check this out. I posted the last episode to the Multiple Sclerosis subreddit and I had an interesting response. Those of you listening back, I have hit the subreddit before and had kind of interesting times on Reddit. So, I’ll just read it for you and then we can break it down.
The post that I wrote was called, We Can Achieve What We Set Our Minds To, We Just Might Have To Do It A Bit Differently. And underneath that, there was a picture of the Hoppin Hot Sauce Booth that I used for the picture of the last episode. I wrote, “Running a business with MS is extra difficult, but I don’t think it’s easy for anyone. And I believe that us MS warriors can do what we put our minds to. It’s a good think to push against the limitations MS puts in front of us.” And then I had an excerpt from the post, talking about Hoppin Hot Sauce went to the Harvest Festival. It was hard. There was talking. I had to sleep the next day. And check out the full episode. And I ended it out by saying, “We can achieve what we set our minds to. We just might have to do it a bit differently.” And then, I started to get response and this is always when things get interesting.
So, I always go to Reddit, and I’m like, “These are my people, they’ll support me,” and it always ends up just being a little bit different. Because what it is, is it’s an online forum full of anyone. And it wasn’t too bad. People didn’t hate on me but I thought it was a mixed bag. So, I ended it up, “We can achieve what we set our minds to. We just might have to do it a bit differently.” 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.”
So, I had to take a step back off of that because I didn’t mean to insult anybody. I was looking for support here, and now I’m insulting people. Something has gone wrong.
I replied, “I appreciate your perspective. Thank you for sharing it, and I didn’t mean to insult anyone. I started the podcast as a way to take charge of my own representation. To create a positive image of someone affected by Multiple Sclerosis. But attempting to enact positive change in their life regardless of the limitations.”
The response, “No worries. I was just trying to share a viewpoint from the other perspective. A lot of people with MS get forgotten.” And at that point, another person responded. “Thank you for posting. These were my thoughts exactly. You running a marathon with MS is my getting out of bed.” And then another response, “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. That was good. I’ll take that.
And then a 29 year old guy wrote, “Hot sauce and spicy food enthusiast here. And if it goes for 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 picked me up a little. It’s from a young person, a 29 year old guy.
There’s a lot of information about MS saying, when you get it you get told you can’t do what you wanna do. That you will have disappointment if you try. When I got MS, I didn’t accept that idea. Everything is finite for everybody, is what I thought. We’re all here on earth and none of us is getting outta here alive. And I think you should use what you got, while you got it, and that goes for everybody.
Some of the comments on the thread made me feel kind of sad. First of all, I didn’t mean to insult anyone. That was tough to hear, because I really don’t mean to insult anyone. And I think we should all try as hard as we can. 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 at a basketball. If I wanna be involved with basketball, I have to work in the front office or as a coach. Or as a towel boy, a water boy, whatever. I’m not going to make the team, but if I love basketball, I can find a way to get involved with it. To make it my life, even.
I wanna make that clear. Regardless of our abilities, we can follow our passion and try to find fulfillment. And to me, that’s finding fulfillment itself, just trying to find it.
I made this podcast to encourage others to trying, and not to compare myself or insult people. And the other end, I felt a little bit judged. I’ve had MS for 20 years and it’s no cakewalk. I peed my pants a bunch of times, and anyone who pees their pants can tell you that sucks. I felt like a total complainer but I’m not. I’m just getting started. I have so many other problems related to MS, I could go on and on. I say the wrong word, I forget what I’m talking about. What do you want? I had the MS for 20 years and I don’t appreciate people telling me I’m at the beginning of my journey. I got a long way to go for sure, and I understand that perspective. And that’s how I look at it, but I wasn’t born yesterday and I wasn’t diagnosed yesterday.
Anyway, thanks for listening to this. I think that what I’m gonna learn is that going on Reddit for support is a mixed bag, because anyone can be there and say whatever they want. And that’s the whole point of it and that’s why it’s good. But at the same time, I might be barking up the wrong tree to bring my message there, looking for support. I’m not really sure. I just don’t know what to do really. It stopped me from making an episode for a while, because I wasn’t sure how to deal with it. But I’m just gonna keep on going. That’s the only way.
So, this is What’s The Matter With Me, Episode 15 in the books. I went to Reddit and probably won’t go back there after this episode. Maybe next episode, I’ll go back there looking for help again. Come back here being like, “Reddit was mean to me.” I mean, who cares really. You try what you can. Everything is finite. Not everyone can dunk a basketball. Not everyone can palm a basketball. I could. I was a heavy kid, and now I’m not. I’m six feet tall. I do not have hops, let me tell you. And I’m not making the team. You know, I can’t put a body on the rebound but that’s about it. You know, maybe I’ll get dinged up in football. I should play football, but I got enough upstairs to worry about.
Anyway, Season Two, Episode 15. Just complaining, looking for support. I don’t even know what this is about anymore or why do this, but it’s another one in the books. Thank you for listening. Stay tuned ’til next time. Thank you for listening to the What’s The Matter With Me? podcast.
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