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Man!– I have trigeminal neuralgia, my face hurts. Ow! The kids had to go away, it hurt so bad I couldn’t handle it and I freaked out. I’ve been staring at plants in the garden. I grilled chicken for the whole family, had dinner and couldn’t eat it, because my face hurt. Tomorrow is Koko’s third birthday.
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General confusion and the inability to think of anything much at all last week.
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.
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.
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.
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?
In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.
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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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 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.
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Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.
I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time. It’s fixed now.
I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds. He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh
Resigned from questionable Traditions. It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that. I must admit to feeling some purposeless. However …
Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.
I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!
We went to Monterey on vacation. It was frustrating because I felt very limited by disability.
We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk. I hope my kids had a good time, I did not. It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.
When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.
I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.
The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.
I’ve been going through lots of trigeminal neuralgia. I’m switching from one medication to another. It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms. More about TN in S2, E6: Awaker.
Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.
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Mom listened to the podcast, and she told me, “I listened to your pod.” Isn’t it funny how parents do that? They get creative with the lingo. She used to say, Intendo instead of Nintendo, and nowadays she does the same thing with text messages. She calls them tweets. “Tweet me,” shje’ll say. Or, “I tweeted you. Didn’t you get my tweet?” Shoutouts to Mom, love you Mom. Email me using the contact form on the site, and I’ll shout you out.
Writhing In Pain, Crunked Up or Crunked Out?, Coaches jackets, living in a hair gel air bubble, making music with my old compadre, accessible instruments, its good to be alive. It’s all in the last episode, check it out.
“AAA!!” John John shouted as I bent over to brush his teeth, pointing frantically. I tried to look where he was pointing, but he moved whenever I turned my head to look. “Papa, you’re drooling,” he said, and laughed. I looked in the mirror, he was right, I had drool on my chin. The way things have been going, it was the least of my problems, but its a phobia I have — to become a vegetable. It’s just fear — my drooling scared John John when I was brushing his teeth, it is what it is. If I can keep my mouth shut and stay focused, I’ll be all right.
My most major fall since the last episode occurred in the backyard while I was gardening. First off, I am unhurt. I fell through the fence when I was trimming the garrya elliptica wavyleaf silktassel bushes. Completely through the fence, I ended up in my neighbor Tim’s yard. The garrya bushes are low-growing and dense, and they were covering my feet. I reached out a hand to steady myself on the fence, it moved and I fell right through it. Nami helped me put it back together. The posts are cracked and rotting, it seems like the next strong wind will bring it down, but then in the morning it’s still standing.
I shot a video for Hoppin Hot Sauce wearing my new coaches jacket that I got screen printed in Oakland. It felt great and I think it might have looked great, fingers crossed. I read the following script:
My name is John Hoppin and I created Hoppin Hot Sauce from chiles, Meyer lemon, garlic and spices.. I’ve worked in food all my life. I put hot sauce on everything, grilled cheese, lunch leftovers. It gives it a certain Tang that I prefer.
I have multiple sclerosis and it makes it difficult to work in the kitchen environment. I didn’t let it stop me from cooking.
I made Hoppin Hot Sauce to share the taste of my table with yours. It’s all natural with no preservatives, and all good stuff inside. For people who want their food to taste the best, nothing beats Hoppin Hot Sauce.
It made me feel powerful to write and deliver those lines. I hope it will turn out, I’ll share it with you when I get it out of editing.
I’m on less sedation and it’s feeling pretty good to be more alert. Maybe ‘alert’ is a stretch. I’m afraid of more pain, that the pain will wake up and rear its ugly head. For the time being, I am relatively awaker.
Live in the present moment.. I had this more-or-less standard revelation listening to music on the way to the farmer’s market. There were a lot of wonderful fruits and vegetables that deserved my attention, and there will be more next week. If I stay focused on the present, not stuck in the past, or woulda-coulda, I think it will help me be happy.
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Shoutouts to rocky Nate and joe.
Last episode episode 4 I was in so much pain. It almost made me angry but I think it was making me crazy. I was just writhing in pain check it out it’s an interesting listen.
My last episode was kind of terrible because I was just in pain so much but this episode I can report that my pain level has downgraded from extreme pain to intense pain and maybe even bearable. Definitely bearable I’m going to put it in the bearable category and no one can stop me because it’s my podcast. It’s bearable
I’m in the process of changing my trigeminal neuralgia medication. In order to do that I am currently taking both my old medication and the new medication. Since they both have a sedative effect it’s I’m very crunked out. Or crunked up I’m not sure how the direction works there
Coaches jacket. I went to Oakland and pick them up this morning. It was very tiring because like I said I’m totally crunked up or possibly out. It was a lot of driving and I hope I don’t have to drive a lot more today
I’m trapped in a bubble in the hair gel, because I’m overmedicated.
Joe was in my high school band. It was called okra blues and it was mostly Modeled after the Jon Spencer Blues explosion and RL Burnside. It was punk rock blues. He took his shirt off at the catholic school.
Nowadays We Jam together and I don’t play a lot really anymore. I’ve listened a lot. My approaches different and it is more like meditation and exercising acceptance of the sounds I’m making.
I’m using a ROLI Seaboard, an accessible keyboard with different ways of striking notes and making sound. It’s good to have an instrument to play.
It’s good to be alive. I’m grateful for my family and friends. Every day’s a new opportunity.7 things are changing with my pain situation it is evolving in the new medication seems to be starting to work.
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Thank you for tuning in to the What’s The Matter With Me? Podcast. In Episode 23 Roll With The Punches I fall asleep at the KFJC meeting, hang in the yard, experience intense Trigeminal neuralgia pain, and read an old song lyric I wrote called “Roll With The Punches.”
I fell asleep at the KFJC weekly station meeting and that was distressing. I woke up and everyone was looking at me. It shook me and later in the evening I fell off the station couch awkwardly. I go to KFJC to relax and these kinds of things make that difficult.
I went in the yard with John John. It was a sunny warm day and we took our shirts off, wrapping them around our heads. We laughed a bit and smiled. It was a good thing.
I have been experiencing pain from trigeminal neuralgia in my right lower jaw on the buccal side. It feels like going to the dentist, and when they say “it’s going to pinch” before you get novocaine and then it pinches and won’t stop pinching all night long. It’s very hard, and I hope it stops soon.
I read a song I wrote called Roll With The Punches. Check it out:
Roll With The Punches
You gotta roll
With the punches sometimes
Sometimes,
You gotta rollYou gotta know
Who’s on your side
Just as much as
Who’s passing you byDon’t have no glass jaw
O Hell Naw
When you get knocked down
You gotta stand up tallYou gotta bend but don’t break
Give em all they can take
And a whole lot more
Until you hear em hit the floorYou gotta roll
With the punches sometimes
Sometimes,
Sometimes.
-John Hoppin, 2013
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