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 to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.
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
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.
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.