S2, Ep. 15: Misadventures in r/MultipleSclerosis

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.