Welcome Whats The Matter With Me? Season 2, Episode 13: It’s Fall
… when they came to get the doctor, right away something was different. It was my first time working with a disabled care provider. It was great. I thought that was great and I told her so. I said, “Hey man, it’s cool what you’re doing. It’s cool to see someone disabled as a care provider. I really like it.” She had a disability you could see right away looking at her. It made her work more complicated, but she had hacks and workarounds just like I do, except she sat in the doctor’s chair.
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.
JOHN HOPPIN: Welcome to What’s the Matter With Me? podcast Season two 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.
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, ask your health care provider. Got that? There’s no advice here. Nothing is going to help you. All right, enough of that. Something may help you. Something may help you. Mixed messages here on What’s The Matter With Me?
Recap last episode, episode 12. I was talking about antacids. I had a major issue, where I’d want to jump off a bridge and then I took an antacid. I felt better. My phone kept answering, what does my dad look like? And I was just trying to find out what my day looked like. And it was constantly giving me pictures of my dad or what it thought my dad might look like and none of which look anything like my dad.
All right, so shouts to Rocky, shout outs to Rocky. Shout outs to Patrick, thanks for listening. Don’t forget to write me via the contact page because it’s a Hoppin world. I will give you a shout out even if it’s just to Patrick and Rocky over and over again forever. Shout out y’all.
Nat, I dig your paintings. We should do a trade. I mean, I have some paintings I made. Want to trade me? Email me via the contact page. I’ll give you a shout out mostly free of charge.
I tripped and fell. I haven’t been talking about that very much but I tripped and fell in this brutal way. I was in my living room and I have a rug there, there’s kind of a little tight spot to get in it and I tripped right around there and I fell and I hit the back of my head on the corner of the wall. And man, that hurt and it made this loud cracking sound. I thought I might die. I thought it was curtains. It was tough. It made a big lump on my head. I fell and hit just the worst. That’s always, I’m usually lucky but this time I just nailed it, back of the head on the corner of the wall, the corner of the wall near the floor, so it just didn’t give at all. It just was like crack on my head and I’m okay.
But man, that hurt and it was a brutal fall. It might be the most brutal. Last season remember I fell and got my hair and my head and I got scalped by the house. That was tough. This is competing with that. For a couple of days, I had a big lump on the back of my head. It’s pretty cool now, I think everything’s back to normal. There was no brains leaking out luckily. And I seem just as much brain as I used to, so that’s my clinical diagnosis. I have as much brain as I used to. Man, it was a gruesome fall.
Fall is here. We made some butternut squash and risotto last week for the family. People like that. I tripped and fell in the middle of the yard when I was watering, still got to water, even though it’s fall. I had to get to the chair in the corner to stand up again, so I had to slide on my butt all the way from the center to the corner of my yard. It was kind of an epic journey. I slid and slid, but then it was there and then I just got in the chair and then I stood up out of it and walked away. I kind of figure I’m getting up better. I just need a method.
What do you know? It’s fall. There’s falling. I got a new brace. My old brace started to develop a crack and it was going to fail, and of course the warranty ended. So right after that ended, the brace started breaking. So I took it in to get a new one and it was something cool when they came to get the doctor, right away something was different. It was my first time working with a disabled care provider. It was great. I thought that was great and I told her so. I said, “Hey man, it’s cool what you’re doing. It’s cool to see someone disabled as a care provider. I really like it.” She had a disability you could see right away looking at her. It made her work more complicated, but she had hacks and work arounds just like I do, except she sat in the doctor’s chair.
It was so cool. And during the exam she couldn’t do this one thing, so I kind of helped her with it. And then she asked me to do something, I couldn’t do it exactly. She helped me. It was cool, man. So to have a care provider who’s also disabled, someone who’s in a elevated position in the room. I’m the patient. She’s the care provider. It was cool. Shout outs to disabled people who go through a lot of work to help other disabled people. That’s cool.
I didn’t get the fellowship. I didn’t receive the fellowship that I applied for, but I understood something. I wrote that essay and I understood through doing that, this is about creating my own representation, which is necessary because multiple sclerosis is often portrayed as a thief that steals the capability of the people that it infects. Yeah, I’m serious. They always say, “It’s like the prime of life disease. It takes everything from you.” And I’m here, I’m like, “I got a lot. It takes what?” That’s the thing. I didn’t like the way I was represented. I was not comfortable seeing myself as incapable because I have capability. Maybe even I could have a great capability or somebody disabled can have a great capability. Try that idea on. That’s not the way we think of someone in a wheelchair. We think they can’t do anything.
I’m getting disabled. People look at me and are like, “Oh, we’ve got to help that guy because he can’t do anything.” I understand that point of view because I have it too, but I decided to try. I’m going to try and have a great capability. Why not? I’ve always thought ‘aim high,’ and since I’ve decided to try, that in itself is capability. I’m capable to try and in my training I’m trained as an artist. That’s the one thing I know how to do and I’m documenting my story to create my own representation. And this is what it’s like.
It’s the part of the year where the second harvest of figs is here and you have an early one in June and then they all come ripe again later in the early fall, late summer, early fall. So it’s here and at this part of the year they’re like, “This is our final harvest.” So they start dropping off the tree and they end up on the ground and I have to remind myself, don’t eat the ones that have been on the ground. You don’t know what they’ve been doing there on the ground or what someone’s been… anyway, don’t eat the ones off the ground. It’s okay if you’re going through the tree and it falls on the ground, you can pick it up. But if it’s just on the ground, you don’t really know. I’m just mostly speaking to myself here, but it’s important. Don’t eat the figs off the ground. You don’t want that kind of surprise in your diet.
My hand is really useless. It’s in a claw shape most of the time. Sometimes my thumb goes under my index finger. At night when I’m sleeping and I wake up a four in the morning, it’s the best time for it, it can relax a little bit. It’s still clawing up. I’m at cross purposes at four in the morning, cause it’s the best time for being asleep. Best time for my hand, but best time for sleeping. Anyway, it’s hard to move around and get up and do anything. I’m really bad at delivering hot sauce. That has become a challenge now. My clients are understanding and they often give me a hand and I guess it works, but it’s not right for a long-term solution.
It’s also made falling more difficult because I can’t protect myself. I’m the million dollar baby, you got to protect me and I can’t protect myself with my right arm. So oftentimes I’ll reach out, protect myself with my left arm and then I have the right shoulder and face that’ll hit the ground or the table or whatever I reach out. I can’t block so I’m getting the crap kicked out of me and banged up in addition to having a useless arm and claw hand.
It’s pretty tough. I’m getting hit a lot. I can’t block but it’s good to say it out here. I feel supported just to say, sometimes when I was a kid coming up, when I had trouble in my life, I had something that I had to deal with, sometimes I’d psych myself up. This is psyching me up. It’s tough. I can be true about it. I don’t even know. I know people listen to this and that’s amazing, but right now in my room, in my studio, just to say it out loud, my hand doesn’t work right. I’m at work. I’m trying to work. It’s pretty tough. I fall, I get back up again though. It just feels, that makes me feel better to say that. And I have to sincerely thank you for listening to it.
All right. All right. That’s another one in the books. Thank you for listening. You can find the What’s The Matter With Me podcast on whatsthematterwithme.org and iTunes. Make sure to subscribe, give it a rating and a review, why don’t you? We’ll be back next week. Until then, it’s another one in the books. Thank you for listening to the What’s The Matter With Me Podcast.