Gary: The following is about my personal experience with MS; others may have different experiences.
Gary: Ok, I think we are recording now
Heather: La,la,la,la! I heard you have a little song you made for us.
Gary: I did make a little song for this.
[guitar strings playing]
Gary: [singing] Waking up late never felt better, but here is Coffee Talk with Gary and Heather.
[guitar strings continue playing]
Heather: You really outdid yourself there.
Gary: I really did, [laughing], it was a lot of work right there. Alright so we’re going to do something really interesting. So, this is Coffee Talk with Gary and Heather and we’re going to avert our eyes, um, and we’re just gonna, just do a little chat.
Heather: Maybe we could introduce ourselves?
Gary: I think that’s a fantastic idea.
Heather: I’m Gary obviously.
Gary: Obviously! I mean you have a very masculine voice.
Gary: Ok. My name is Gary, and this is my partner, my hetero-life-mate. Could we go with that?
Heather: That is awful.
Gary: [laughing] That is very awful.
Gary: Heather, hello.
Gary: So we’re just going to do a little coffee talk right here. Question: how do you take your coffee?
Heather: Are we talking iced coffee or hot coffee?
Gary: Either or.
Heather: Well right now I’m drinking hot coffee, it’s dark chocolate hazelnut coffee.
Gary: That is exquisite. Question: do you prefer your coffee at home, or do you like to pick it up?
Heather: I like my coffee everywhere.
Gary: Yeah, yeah.
Heather: Most of the time I try to make it at home to save money, but I am addicted to a certain um…
Gary: Yeah, I’m addicted to a certain chain too. I usually, on the way home from work, I will stop at this certain chain and I will have my coffee and that usually wires me up for the rest of the ride.
Gary: Who do you usually like to connect with when you’re having that cup of coffee? Or do you connect with someone? Or do you like have coffee and chat with someone specifically or just…?
Heather: Well, I really like it when you and I get to sit like out on the porch and have a coffee together.
Gary: Mhm, mhm.
Heather: But honestly, most of the time, coffee is a solitary affair for me.
Gary: Mhm, no yeah, usually I find drinking coffee in the car is a solitary thing.
Gary: So you’ve been with me on this journey…
Gary: …of having MS, but before that, we’ve been together. But having MS, has it changed our dynamic?
Heather: (mockingly, obvious) Oh my God, you have MS?
Gary: Oh no, I didn’t tell you? You never got my text message?
Heather: (more serious now) I think it did change the dynamics at the beginning.
Heather: So, at the beginning when you first got diagnosed. We didn’t actually live together.
Heather: We spent a lot of time together, but we didn’t live together.
Gary: Right, right, right.
Heather: But strangely enough once you couldn’t walk or write your own name, I felt like maybe you shouldn’t be left alone.
Heather: So we all squeezed into your teeny little apartment together. So, I would say the dynamics changed big time at the beginning.
Gary: Yeah but that’s debatable. I could still cook an egg even though I can’t sign my name.
Heather: Could you?
[Gary still laughing]
Heather: I don’t remember you being able to do much of anything at the beginning there.
Gary: I just would like……yeah, it’s true.
Heather: And I, I think that was super hard for you, so you were not the same person either.
Gary: I was very emotional.
Heather: You were…. very emotional and my biggest fear was that you would lose the part of you that I loved the most. The funny part, the silly part, the happy-go-lucky part. I didn’t want the bitter to take over.
Gary: I was afraid of that too, like...
Heather: Yeah, cause I had an uncle who had MS long before treatments were available like they are now. And he also, he was the funny guy, that’s what we loved about that uncle. He was so funny all the time, he always had us laughing…
Heather: And when he got MS, he turned to a bitter, and twisted person that was not somebody we recognized anymore.
Gary: I did have my moments, I think...
Gary: Yeah, I did have my moments.
Heather: You touched that darkness for sure.
Gary: I definitely touched that darkness. I’ve been trying to accept it and trying to live with it is much different than, uh, reading about it.
Gary: Did having MS, like change the dynamic in the sense of like, you feel like, do you stop and smell the smell the roses more? Like, do we...do you feel that way?
Heather: I feel like we did at the beginning…
Heather: I don’t know that we do that as much anymore, but in the beginning, it definitely just put the brakes on our lives completely and we had to reevaluate everything... figure out what was important and what we, you know, were going to focus on.
Gary: Right, I remember very early on I was very emotional. Remember that... I would just start crying at random intervals?
Gary: But yeah, it was very odd.
Heather: I think that’s actually another MS symptom for you.
Heather: You frequently are extremely emotional.
Gary: Mhm. It's just really weird that you kinda like, think about that kind of stuff.
Gary: I mean personally speaking, did me having MS make me stop and smell the roses, and kind of slow down? Absolutely.
Gary: Because I was always [while clapping] go, go, go, go, go [clapping stops]. Kind of thing. I’m going to burn this candle at both ends and I’m just going to rev the engine as far as I can and then kind of, having MS kind of side-lined me....in a good way because it taught me like, maybe it’s not a good idea to work so many hours or maybe it’s not a good idea to run around and just keep going as if nothing can stop me, cause it can.
Gary: You know, and I think it kind of showed me that I was vulnerable, but that was a good thing.
Heather: Mm. I think it forced you to learn to accept help.
Gary: I am the person that helps, not the person that asks for help.
Gary: I think at the very beginning I found a group online and it helped me. There were just times where I would vent.
Gary: When you get to this point where you oof... it’s not about accepting, but when you.... maybe it is accepting. You have that short moment in your life where you really wish this wasn’t your bag. You know, when you wish that this wasn’t something that you would have to share with your partner or your family you know?
Gary: Like you wanted something more private, but you can’t really be private with MS. MS is just MS. You just kind of learn to deal with it. Like my little...
Gary: [stumbles over words]
Heather: That’s another MS symptom.
Heather: You didn’t use to stumble over words like that.
Gary: Oh, I still can. I still can.
Gary: I think my little pleasures that I found was a community of people. I think that there is truth in numbers and truth in power and you might not have a good day, but you can have other people’s stories lift you up, and I think that’s really important because then you’re not alone.
Gary: I think that’s the best thing you can do, is just not be alone. Being first diagnosed, I think the first thing I thought is “What?” and “Huh?” and “Oh, so can I take chemo for this?” and...
Heather: I think you thought your life was over.
Heather: I mean, I was in nursing school at the time, so I knew more about MS than you did. I knew it was not a death sentence.
Heather: I knew it was something that you can learn to live with.
Heather: But I don’t think you took it that way.
Heather: You took it immediately as “my life as I’ve known it, is over.” and I think we were super, super lucky to find your doctor when we did, we found him very quickly.
Gary: He is a godsend.
Heather: And I think he was really instrumental in sort of beating that mindset out of you. He was so matter of fact about it. He’s like “Yup, you got this, but we’re going to take care of it. You’re going to live a normal life.” And you’re like “Yeah, but...” and he’s like “Nope, nope! If this first medicine doesn’t work, we’ll find another one because there’s medicine out there.”
Gary: I remember one of the first questions I asked was “Should I start my disability paperwork?” and he’s like “We’re not even going to talk about that.”
Gary: But um, I did feel that my life was over.
Heather: Well I mean, at the time…
Heather: We should say where you were. I mean you were not able to walk.
Heather: The left side of your body was pretty much completely useless.
Heather: So you couldn’t walk, you couldn’t hold a pen, you couldn’t write. You went from perfectly normal…
Heather: … to completely debilitated in a matter of a few days.
Heather: So, I can see why it would be so hard to even be able to imagine going backwards from that.
Gary: Yeah, I mean, I would go in a wheelchair and just go in circles cause my other arm wouldn’t work. [laughter]
Heather: Do you remember the day that you decided to try walking? It was like, it was like a weekend to your hospital stay that they have been pumping you full of steroids and you had me take you down to the end of that hallway where they were doing construction so there was nobody down there.
Heather: And you started walking a little bit at a time. Crying the whole time, cause you’re Gary.
Gary: When it comes down to it, um, how many years has it been now since I’ve been diagnosed?
Heather: Oh…you got diagnosed in the summer.
Heather: Was this your third summer?
Gary: I want to say it was, I might be wrong though.
Heather: Yeah, no, I think you’re right because that summer you got diagnosed, we had all those plans to do hiking. We didn’t get to do any at all.
Gary: I wonder why...
Heather: And then last year we were like “Ok, NOW we can, we can hike.”
Heather: And we were like too busy working to actually do it.
Gary: Mhm....but we still have dreams to do it. I mean one of my favorite memories of this summer is going to um, that, Angel Falls?
Gary: That was beautiful and having the energy and just going up there, and just going with it. It’s good times.
Gary: But I mean every day’s a journey. Every day’s an adventure and I get to learn more. Now we get to learn together with the helping hand of…
Heather and Gary: [stated together] …Coffee!
Heather: This episode brought to you by…
Heather and Gary: [stated together] Coffee!
Gary: Well Heather this was awesome to do this, hope we can do this again.
Gary: Well, thank you for listening, this has been Coffee Talk with Gary…
Heather: …and Heather!
9:56 [Closing guitar strings played]