Men and MS: Navigating Identity, Resilience, and Hope

Men and MS: Navigating Identity, Resilience, and Hope

Episode 201 – Podcast Transcript

[(0:24)] Stephanie: Welcome to the Can Do MS podcast. I’m your host, Stephanie Buxhoeveden. I live with MS, and I’m also a clinician and MS researcher. Today, I’m excited to chat with Luis Guerra, a musician and entrepreneur based in Los Angeles who lives with MS. Hi, Luis. Welcome. Very excited to talk to you today.

[(0:42)] Luis: I’m excited to be here. I’m just like, it’s-, I think it’s amazing that you’re even doing this. So I’m just excited. I’m grateful to be here.

[(0:49)] Stephanie: And I’m really excited for our audience to get to know you like I know you. Um, so let’s start with before MS entered the picture. Who was Luis?

[(0:58)] Luis: Oh my God. Luis was this, um, kinda ran-, like a raging musician, you know? And I started off really young, and I, I grew out of, um, I grew that life out of dysfunction. And like, I just found my way through music. And I just never really looked back. So-, and I built a career, and I recorded, and eventually… And I-I studied the double bass, so, so I went in that world. And I went to jazz and into classical music, and until eventually into, like, pop, salsa, rock, whatever, and I st-, I, I just learned, and then eventually got into musical directing.

And I had this, like, cra-, I ha-, I look back on it, I ha-, Stephanie, I had this crazy life. You know what I mean? Because I just, like, didn’t rea-, I never really stopped. It just, like, kept going, and it really started with, like, my dad telling the four… There was four of us. I’m the youngest, uh, four siblings. And he’s like, “Yo, you gotta like… All of you kids need to read and write music.” And I was the only one that was like, “Okay.” [chuckles] You know, I did it.

[(1:58)] Stephanie: Yeah, that’s nice of you to, to go along with the plan.

[(2:00)] Luis: Yeah. And so I just did it, and, you know, here I am. No, I mean, that’s, in a, a, that, that’s a general… That’s summing it up really quickly.

[(2:09)] Stephanie: Yeah. So that was your first love, your first passion, and a very full life, clearly.

[(2:14)] Luis: I would say so. I mean, I would say definitely music is like a lang-, for me, music is a language that I learned really young. And so I didn’t really understand how deep it was connected to me as a human and, like, the passion until I was later-, I was older. Because I just learned how to, like, do it, you know? It was, it was very like, “Okay, I have to do music.” [chuckles]

[(2:36)] Stephanie: Yeah.

[(2:37)] Luis: Yeah.

[(2:38)] Stephanie: Yeah, I get that. I, I also learned music at a young age, and I think there’s something really special about learning the language of music and learning to read music and having that be part of who you are as a person. And…

[(2:52)] Luis: Right.

[(2:52)] Stephanie: And musicians are very driven, and as you mentioned, maybe not the most conventional lifestyle. Um, and now looking back, do you think that MS might have been present before you were actually diagnosed?

[(3:05)] Luis: I was having a conversation with a really good friend of mine that I used to tour with, right? And he’s a drummer, and I was a bass player. And like when we started out, we were just like, “Let’s go tour.” So we’re like in our 20s, and we’re like, “Whatever.” Um, and I was asking him, I-, about this question. He said, “Well, what I remember was that basically yes and no.” Like I-, i-it’s-, it depends how we define MS. It’s like it’s not defined. There’s not one size fits all for MS, right?

But when I look at certain s-symptoms like bladder spasticity has been an issue for me. It was an issue for me y-, like earlier on in my life. I didn’t realize that, right?

[(3:40)] Stephanie: Right.

[(3:40)] Luis: I think a couple other things, emotional deregulation, you know, um, having your thoughts and ideas sort of like, you know, align. I think that’s an issue for people with MS that I’ve noticed. I’m not saying everyone has it. Um, and then I also think the coordination, right? So like for me, I had a lot of coordination and dexterity in my hands, but not necessarily my legs. And I-, so when I think early on, was MS a part of that? Y-, I would say ye-, I would argue yes. Was it disabling? No, absolutely not. It, it didn’t, it was sort of like, “Oh, there’s Luis flopping around. He’s kind of a clumsy guy.” I’m like, “Yep, that’s me,” you know? [chuckles]

[(4:19)] Stephanie: Yeah. And then, uh, and, you know, that’s such a common story of, of the first signs and symptoms are so subtle or they come and go. And so people often ignore it. Um, but what made you finally realize that something was seriously wrong?

[(4:33)] Luis: Um, I mean, I got a lot older, and then really what, really MS arrived in my 40s in a way around COVID. It-, around getting vaccinated, something turned on, right? In my… I need a vaccine for a, uh, like a contract job I was doing. I needed that. I need a card. So-, but it triggered something in my body, and we can-, who knows what it was. Maybe it was like I was old enough at that point. But it really, MS showed up in a way after the symptoms progressed and got worse within a few months. I was like, “Oh, shoot. I have to realize this.”

And MS showed up and it, and it really shook me to my core and was like, “Wake up.” Like, “Something’s changed in your body now, and now you have to deal with that.” And it was sort of like, you know, I had no idea, so it, what it was, so it’s sort of like the realization of like, “Am I dying? Is this a stroke? Or could this even be MS?”

And I was starting to, like, explore on the internet, and it was showing up like MS, it could be what you’re describing. But I was like in extreme denial and doing everything I could in my power to stay in denial. [chuckles] And, um, so when MS finally did-, when the symptoms progressed, that’s when MS was like, “You gotta wake up and make a decision here.” And that’s a journey for me. You know, I’m still in it, obviously. Um, and, uh, but now I’m on the other side of that, you know? So… And that happened in my 40s.

[(5:54)] Stephanie: Yeah. And you’re not totally unfamiliar with MS, right? You have family who was affected.

[(6:00)] Luis: I do. I do, I do. And then neurodegenera-, de-, neurodegenerative conditions, I saw my dad succumb to Parkinson’s. Uh, my grandmother on his side, to Alzheimer’s. Uh, we have muscular dystrophy. There’s, um… I mean, there are, there are people with tremors.

[(6:19)] Stephanie: Mm-hmm. And now, you know, you’ve already touched on this a little bit about how MS doesn’t just affect your health, but really, it disrupted the identity you had for yourself, like who you thought you were. So let’s talk about a little bit, um, about how MS affected the way you saw yourself as a man.

[(6:39)] Luis: Um, you know, I, I honestly, I think, uh, the way I saw myself as a man was more unconscious in the sense of like I didn’t really second-guess the programming that already happened to me as a man, right? In society. So I ha-, I was married. I am a parent, which I, I, you know, I love that aspect. But there are certain biases that I had as a man that were sort of just, it was expected. It was sort of like the way I was brought up, right?

And so MS really flipped that for me because it was sort of like your masculinity does-, has no part in this anymore, right? I mean, it-it-it does, but first of all, you gotta take care of your physical health before you can get back to that. But what does masculinity really mean to me? And i-it did take the sort of the idea, that paradigm and, a-and flip that.

Masculinity is w-, i-, I feel like is a combination of what we believe, what we’re programmed early on to believe. And then MS shows up in my life and it made me question what is it. And that’s where, that’s sort of where I’m at now. Like, I mean, it’s, it’s not so much that I have the answer, but I see what I’m not. And if I was, MS is like, psh, physical health, then everything el-, to me, right? Like, you deal with that, and then you’re gonna fall in, then everything else is gonna start to make more sense.

But if you don’t and you try to force the issue, MS is going to win because MS is like, it’s just, it doesn’t care. It doesn’t care if you’re rich, poor, brown, Black, green, blue, whatever.

[(8:17)] Stephanie: Male, female. Yeah.

[(8:17)] Luis: It doesn’t matter, right? Male, female, it does not matter. It’s just gonna take you and be like, “No, you got MS.” And so whether if you can deal with that, that’s up to you, and then that’s, you know, that’s back to our, our programming. So-, but back to the question about masculinity, I feel like that’s a huge part of how I started to address and, and how I’m addressing dealing with MS in my life. Because it is… I can’t-, there is no like, you know, I’m not, I’m in denial, I’m gonna ignore it. There’s none of that. Cuz as you know, MS is like, it’s, it’s not like that.

[(8:52)] Stephanie: You have to face it whether you want to face it or not. I think that’s a choice, uh, that’s taken away from us when we’re handed a diagnosis of MS.

[(9:01)] Luis: 100 per-, a million percent. Well said. And I think as men, w-, our-, some of our programming is like, “No, I’m gonna, I’m gonna fight it. I’m gonna control it.” It’s like, “Nah, man.” MS is like, “Psh, you’re way-, you don’t-, you have no idea.” And I think, and this is where I get into that sort of experiential or ex-, validating our experience of MS. So we can touch on that. But there is no substitute for living with this condition versus studying it. For-, and it’s like third-person validation versus like first-person, you just live with it.

Well, it’s like, well, automatically your story is like, it’s gonna carry weight to somebody like me, right? Now, if I put you-, if I grew up, for example, where I’m used to putting people or things or whatever, God or whatever, on a pedestal, then it’s really easy for me to see an expert and walk in the room and be like, “You-, you solve my problem for me. You do the work for me,” like neurologist or s-, you know, smart person. But if they can’t, because MS is like, it’s so insidious and conniving, it’s like, it-, it’s like you think this person has your solution? Good luck. You know? And so I think that’s a big part of, uh, why I am where, why I’m ending up the way I am, you know, and how I’m coming to these realizations.

[(10:19)] Stephanie: And I think your… There are three things I think that resonate with pretty much everyone, especially men. Number one, you touched on that uncertainty component of just being thrown into this world where you were very certain of who you were and what your place was in the world and what you wanted to do. Um, and then that control aspect I think is particularly strong for males because they’re told, like, they are to control their lives, they’re the heads of the household.

Whether or not you’re in a traditional marriage or not, that’s a theme that is, as you said, deeply embedded into a lot of identities of men. And now you have… And we’re gonna talk about this, you and I, a little bit deeper, but now you have something that threatens your ability to work in the way that you once did or now you have to re-envision. And then the third thing you said, which I think everybody can relate to, is now health isn’t this abstract thing that I just have. I now have to help myself and take care of my own health. And not to generalize, but men tend to not be great at that.

[(11:29)] Luis: I definitely was not great at that. I-I-, it wasn’t until my… I-I’m part of UCLA’s system, which I think is an incredible healthcare system because it’s research-based. And I don’t, I’m not looking-, I don’t want a PPO. I w-, I’m happy with my HMO having a prince-, what is it? PCP. Like they use all these initials.

[(11:48)] Stephanie: So many initials.

[(11:49)] Luis: I’m like, I like that. I like that because it’s UCLA. And I’ve had crappy healthcare in my life. And I say crappy, I mean, look, anybody doing the work, amazing. Thank you so much, you know? But the reality is like, yes, we are in a society where, like, you can get incredible access… You have, uh, you have potential, right? There’s a potential there to, uh, have accessibility to great healthcare if you want it.

So I am part of UCLA, but that doesn’t mean that my old primary care provider, who was also in denial, was good because she was sort of look-, she’s like, “You’re fine, Luis. This is all in your head.” I’m like, “Yeah, it’s in my head. What the heck?” Right?

[(12:26)] Stephanie: Literally. It’s MS. MS is in my head, but that is so true. Another learning cur-, I mean, we talked about learning the language of music. Now you’re learning the language of healthcare and providers, and learning that not all provider relationships are created equal. And now you’re having to learn how to advocate and go find one that does.

[(12:48)] Luis: And, and you, and you touched on something really important, Stephanie, which is you’re learning. It’s procedural. This is not magic wand. This is like, “Boom, I got all of the, the neuro-, the vocabulary, vocabulary to speak with my neurologist.” Like, no, man.

[(13:04)] Stephanie: Oh, I learn something about MS every day.

[(13:06)] Luis: Right. Oh, I can only imagine.

[(13:08)] Stephanie: Yeah. Every day, and I work in, in the field, right?

[(13:11)] Luis: And you-, but you live with it.

[(13:12)] Stephanie: And I live with it. Yeah.

[(13:13)] Luis: Right. So, like, to me, the validation, you just like, you ju-, that’s why it’s so important to have the conversation, cuz for me, it’s sort of like, well, I get to actually speak to an expert who lives with MS. You know how rare that is in my world? There are a lot of experts on MS. Oh, and they’re gonna tell me how it is. I’m like, “Yeah, but you don’t live with… You’re not having to deal with, right, driving or taking the metro or, like, the chaos of a chaotic, giant city,” which I love, right? Because it helps me sort of like understand the chaos and the unpredictability of MS and how it can just show up in your like, and upend your life. There is a parallel there for me. I’m not saying that’s the most peaceful, calm way for my nervous system, right? Anyway. But…

[(13:58)] Stephanie: But it’s what works for you.

[(14:00)] Luis: But it works for me, and it’s like that-, so this conversation to ha-, to speak with somebody who’s an expert who lives with it is really important. Because-, and it was really important when I got diagnosed eventually, was the fact that my PCP didn’t show up and she sent a substitute who actually listened to me. And he heard me, and he’s like, “You know what? What you’re telling me sounds like… Let’s-, tell you what, let’s book a consultation with a neurologist and let’s have her rule out,” and he listed, and MS was one of the things. “Let’s rule this out, okay, Luis?”

I’m like, “Thank you, man. [thump] Thank you for listening.” Cuz at this point, I was like, not only was I-, the symptoms that brought me to that point or that place, the, the symptoms were raging, but I was having other stuff happening in, in terms of pain, right? And I didn’t realize that was all combined. Like joint-, I was like joint pain, but it was nerve pain, you know what I mean? But I didn’t know what nerve pain was, right? So I had no idea.

My life literally changed when I went to see a more general neurologist who helped diagnose me for MS at UCLA. Incredible neurologist. Why? Because she looked me in the eye and she treated me like a human being.

[(15:06)] Stephanie: And she believed you.

[(15:08)] Luis: Right, and I had no idea how empathy… At this point in my spiritual life, like, or my life existence, I had no idea how profound that was that she was just able to look at me and be like, “I hear you, man.” Like, basically like, “Okay, we’re gonna get to the bottom of this.” I had no idea what that even meant. I had-, I was literally a man who would like maybe go to the doctor once every couple of years to get my blood work done and like, I didn’t believe it and no. Why?

[(15:36)] Stephanie: Yes.

[(15:36)] Luis: “I’m in great health, right? What are you talking about?” “No, no, no.” And then all of a sudden, I switched from that to eventually going to an appointment every day for a while, right? That’s what it takes to get test after test after test, and then you wait for the results. And I mean, it took me like, I don’t know, it took me a while, 10 months, 11 months to get diagnosed.

But eventually they s-, they came back to me, they’re like, “We’re 96% sure you have MS. That’s, that’s, that’s what you have, but the good news is you’re not gonna stroke. You, you don’t have a stroke. You don’t have a tumor. We see like really good blood flow in your brain. You’re doing great, but you have MS.” And I’m like, “What does that even mean?” And that’s what began the process.

[background music]

[(16:22)] Jamie-Lynn Sigler: Hi, I’m Jamie-Lynn Sigler. Even with all the roles I played on TV, managing multiple sclerosis in real life has been the hardest. And speaking up isn’t always easy, but it changes everything. The more prepared you are, the more confident you’ll feel. Learn how at reframingms.com.

[background music]

[(16:45)] Stephanie: Yeah. Now, I think, uh, you mentioned that nerve pain was one of the more severe and first symptoms for you. And I know that for you personally, you’ve really learned to control that symptom with medical help, but also meditation and breathwork and mindset started to become a big part of your healing process. Can you share a little bit about that?

[(17:10)] Luis: So nerve pain for me, nerve pain early on was more like around my joints, right? But then I caught COVID. This is after I was vaccinated. I was in-, I was already diagnosed with, and I got COVID, and I, I… It was really bad. Like, it took me down, right? Put me in the ER, like the whole thing.

So when I came back out, I was like, “Okay. All right. I’m gonna live to tell about it. It’s cool,” you know? And within two weeks, my symptom that first started this fiasco or whatever this, this change, which was wispiness and, like, kinda disappearing feeling throughout my arm into my face, right? Which was, uh, which also had a right leg, like, disappearing. And it was just, like, [snaps] intermittent, but throughout the day. So, like, you can’t really do anything because you don’t know when it’s gonna happen.

Anyway, that left arm turned into raging nerve pain, and it didn’t come on in a way it was gentle. It was sorta like it went from zero to, let’s say, if I’m think of that scale they use for pain, zero to 10, 10 being, like, the worst, right? The most painful, like you’re gonna pass out or, you know? It went from, like, zero to, like, five or six within [snaps] the matter of, like, a day, and I had no idea.

And then the next day, it was like, it came back as a seven. I was like, “Holy crap.” Like, I kn-, and we’re not talking, like, nerve pain, give an example. Those of us that unfortunately have bad teeth or have had bad teeth, like root canal, yeah, that’s nerve pain, right? And you’re, and you feel it. And it hurts, and it’s cold and, like, sharp. Okay, now exponentially, multiply that, and now we’re talking about the amount of pain that’s gonna come into your body.

So eventually, what, what I learned through this is that I want to pass out because it’s too much. My brain, I-I can’t handle it, right? So how do I get to a place of passing out? But it’s nerve pain. It’s not muscular. It’s not skeletal. So there is no narcotic, not that I t-, I won’t take a narcotic, for me, my-, personally, right? So how did I end up, to your, to your question, how did I end up, um, coming to this, I don’t know, mindset change?

Well, one, it was integral w-, for me, was that I, I sought out a pain… I went to a pain cl-, clinic at UCLA, but they didn’t prescribe a medication. They’re like, “You need to spe-,” or, “Why don’t you speak to our pain psychologist?” I’m like, “What pain psychologist? I’ve never even heard of this.” Man, that was easily the most profound moment where I was starting to re-envision how pain sh-, and I, and I just told this story to a friend of mine, that it, like, [snaps] the light switch turn-turned on in my…

It just said to me. And that is, imagine, like I w-, I love to go, um, on long trips. But imagine going to Japan and, and now instead of hiking Mount Fuji, because MS is like you can’t really hike, right? So I’ve had to give that up, the whole hiking, outdoor activities. “But imagine you’re looking at the mountain and you’re drinking matcha or whatever,” she was saying.

It was like, “You’re drinking matcha and you’re taking it in and you’re just having this amazing experience.” I’m like… She’s like, “That’s our relationship with p-, with pain. And when you get on the other side of that, pain all of a sudden become-, that is the consciousness. That’s the pain. Without pain, we don’t have consciousness.”

And I feel like that is a huge part of how I got all the way into mindset. Now I specifically started using meditation as a tool, just like… And I had chants, right? And I-I… Because I would have these bouts of pain. It would come on where I was like, “Okay, this is easily a seven. This is gonna, like… I don’t know how, where this is gonna stop,” but eventually, it’s, like, gonna…

I mean, I’m bent over. I’m dealing with it, trying different medicine to, you know, lower this or reduce it, and eventually I found, uh, an answer. So that, that definitely lowered the threshold. But there was all that in-between period, and that took months to figure this out. So the only thing that I could do was focusing on my breath, and I got into meditation. I’d be happy to explain how, but that is so crucial to how I started to reinvent this relationship with pain, with MS, and everything else.

[(21:17)] Stephanie: And it is a relationship, the mind-body relationship. And I think, again, sometimes men have a harder time getting to that realization that…

[(21:28)] Luis: Well, then why do you say men? I-I-I would say… I would argue that both sexes.

[(21:32)] Stephanie: Oh, yeah, 100%. But I think when I propose the idea of going for cognitive be-behavioral therapy, I tend to get more resistance.

[(21:41)] Luis: Hmm.

[(21:42)] Stephanie: Hmm. And a-again, that could be a generalization, but I wanted you to speak about it in particular, cuz that’s another thing that I’ve personally found to be very helpful. Um, like you, I take medication, taking anti-seizure medication to help control the sudden, like, jerks of pain that hit, love to hit when I’m driving, which is not safe.

Um, but cognitive behavioral therapy helps me, like, calm down the alarm bells that go off in your brain when there’s pain. Um, so similar to what you’re talking about is it helps you realize, like, your brain is interpreting your nerves misfiring as a threat, but there is no threat, right? You’re not getting… We… I think you and I have even said this to each other. So we’re not getting stabbed with knives for real. It’s just our brain interpreting the misfiring signals, and I think it’s, it’s really hard to explain until you’ve just tried it for yourself.

[(22:40)] Luis: Well, I love, I love that you just brought that up. We’re not getting stabbed with knives, even though it feels like it, right? And that’s sort of, like, what that whole, what do you call it, paradox of symptoms and symptom management and trying to explain that and just deal with that. Like, we have nerve pain, so we can… When we have a treatment, right? You’re on a anti-seizure med. So am I, right? I’m on my second one. Um, so I know that there is… We’re not making this up.

[(23:11)] Stephanie: No.

[(23:12)] Luis: Well, we know that, right? So, but for me to say that to somebody else is like, “What do you mean you’re not being stabbed with, you know, knives or, like, electrocuted or whatever is happening?” I’m like because they have no idea, and I’m like, “I really don’t want you to even unders-, like know what I’m talking about.” Like that’s, that’s where I’m coming from. I don’t want that person to have to go through that because it is extremely painful, right? Like, cuz it’s our brain.

[(23:34)] Stephanie: Yeah, and it’s very real pain. Um…

[(23:37)] Luis: It’s very real.

[(23:38)] Stephanie: And that, that mind-body connection and learning how to control it through multiple ways is so important. And I think a really great example of just one of many examples with MS symptoms about how you can integrate, like, your medical care and your mental health and wellness practices to, to sort of get back to closer to feeling like yourself.

[(24:01)] Luis: I-I feel like that statement you just said was so radical because I don’t encounter that. And I live in LA, right? So I’m, I’m looking for the radical all the time. That’s, that’s part of my life, right? I do not think that most… And I’m gonna argue this, and I would love to hear in your, in comments or somebody push back, but I do not agree with that.

I do not think that most healthcare providers that are neurologists even understand, that are beginning to understand how close this is related. The mindset component, the-, or the spiritual health, the mental health, the behavioral health, and the physical health, they’re all inter-, they’re all in, in tandem.

[(24:39)] Stephanie: Oh, yeah. 100%.

[(24:40)] Luis: They’re all in tandem. And I don’t know if that’s because of the way you’re raised or your age or whatever, but it’s like you’re female, I’m male, and we-, I, I do see that exactly the same way. And I do think that the combination of dealing with MS and treating MS symptoms is a combination. It’s holistic. It’s a combination of We-, Western-, traditional Western medicine. This is me, right? I’m saying this.

Traditional Western medicine, Eastern medicine, absolutely, 100%, and also this whole spiritual component, and if you can, like, package that, man, that’s how you deal with… And this is just MS. The-, I mean, we’re ta-, I mean, I’m not even talking about, like, parenting [chuckles] and all the other challenges that happen in life, you know? This is just MS, you know? So I think that’s a huge point.

So thank you for saying that because I, I haven’t really heard that from a, um, somebody, um, at your level, like, uh, from the We-, like, more out of that Western, traditional Western medical background.

[(25:35)] Stephanie: Yeah. I, I mean, it’s true. And you and I have talked about this concept before, and it ties into what we’re talking about now. But although MS has physically made us worse, I think in a lot of ways, it has made us emotionally more resilient, more able to sort of roll with, you know, those other punches in life that you just alluded to, parenting, work stress. What do you think about that statement?

[(26:02)] Luis: I mean, I think, I think it’s you-, there is no think. I think it is. It-, that, that’s my experience. It’s like that is… There is no think about it. It’s like that is the transformation. I, and this-, back to my conversation with my neurologist, she’s like, “Look, you have a decision,” because she’s also like… You know, the thing about being diagnosed with MS is, like, you have to, like, there, there’s a lot of blood work and like other, the spinal tap and like the MRIs, and it’s like, man, they’re just… I forgot the, uh, the check for seizures, but there was like a, I had to…

[(26:35)] Stephanie: Right. You did the EEG. Yeah.

[(26:37)] Luis: EEG, you know, and like, and like nerve conduction studies and like all this stuff, right? And that’s just…

[(26:42)] Stephanie: So many appointments. It’s crazy.

[(26:44)] Luis: Right. That’s just to get s-, like diagnosed, [chuckles] right? And then you gotta manage, right? But I remember her saying like, at a certain point she calls me up and she’s like, “We should have an appointment. Let’s talk.” I’m like, “Okay, great. Sure.” And so I go and she’s like… Basically, what I could tell, and this is me as a 51-year-old n-, well, I wasn’t at the time 51, but this is me, uh, you know, later on. And I’m like, “Okay, this person’s trying to tell me like, “Look, man, you have a decision here. You can go, here, you… It’s a crossroads. It’s like you can go this way and kill yourself slowly, with what I was doing to myself, or you can actually like stop, get rid of all that, and embrace life and live, and the miracle.

And that’s gonna require this shift of mindset and the shift of your diet and your exerci-, like, it’s just gonna change, and it’s gonna keep changing. It’s gonna keep evolving. It’s gonna-, you’re gonna have to keep adapting. This-, there is no stopping this because you have MS. This is neurodegenerative, but, but it, but what’s the alternative?”

And, and that’s when I started to realize, I was like, “Well, she’s basis-, basically telling me you can choose life or death.” And I think a lot of men are like… I’m not gonna say men. I think a lot of pe-, cuz I had a conversation with a very nice young woman the other day who was recently diagnosed in her 20s. So she-, and not, not male. So I’m just saying, like, I think people have to-, they can only make the r-, the answer themselves.

So if you’re gonna fall into the camp of victimization, then yeah, MS is gonna, most likely, it’s gonna win. It’s gonna take you down, because MS is like, it doesn’t mess around, right? But if you do embrace life and all the miracles and all the amazing things that are there and that, like, you haven’t even lived yet, well, then just, like, deal with it.

But to deal with it, “Well, how, Luis? How do I deal with it?” Well, that’s the conversation. That’s sort of what I think you and I are alluding to. I have my own, you know, ways to get there. I’m sure you do, too. But it’s-, as you start to find your people, right, that you resonate with, that have done that, especially in the MS community, it’s like, to me, those are the people.

It’s, uh, there aren’t a lot of men that I’ve ran into. There’s not a lot of men with MS that I’ve met, you know? But there are not a lot of men that I can go and have these conversations with, because they’re gonna quickly tell me or they’re gonna question me in ways that I’m like, “Hold up.” You know, where it’s very easy for me, it’s like, hold up the mirror and be like, “Why are you questioning me? Question yourself.”

You know, but that’s me, you know? And somebody who’s done a lot of work and a lot of introspective work and, like, meditation and what not. My point is, like, if you don’t s-, make the decision to, like, deal with it, it’s going to deal with you, one way… It’s gonna ta-, it’s most likely, it’s gonna take you down. That’s just what it is, you know?

[(29:29)] Stephanie: Yeah. And I think a lot-, it’s very normal to resist that at first.

[(29:33)] Luis: I think so. I think so.

[(29:35)] Stephanie: I think so. Um, I certainly did. You know, asking for help, taking care of myself, those, that came with time and experience and, and with MS reminding me, like, really who’s in control.

[(29:46)] Luis: Yeah.

[(29:47)] Stephanie: So Luis, you’ve lived with MS for some time now. You’ve accepted it into your life. You’ve learned coping skills. And what would you say to another man who feels like MS has taken away the life that he imagined for himself?

[(30:01)] Luis: I would say that, like, again, it’s back to what you were saying about w-, nobody is stabbing you. It’s sort of like MS didn’t do it to you. You, you’re allowing… If you allow that to happen, then that’s on you. But MS isn’t. It’s just like-, but your life is amazing, and it’s full of miracles. It’s just up to you to make that decision. So that’s what I would tell him.

It’s like, you can change the way you, you see it and think. Your thoughts don’t have to be consumed, you know, by… You don’t have to-, it’s not-, you’re not-, you don’t have to paint this really negative, I don’t know, reality, it’s-, because of MS. It’s just like, you got an amazing life.

[(30:37)] Stephanie: Exactly.

[(30:38)] Luis: Right?

[(30:38)] Stephanie: And you have to adapt, right?

[(30:40)] Luis: Adapt, and, and then it’s like, well… And, and so the question back to me would be, “Well, how do I do that? Because my life is so crappy.” I’m like, “Well, start with gratitude, man. That’s what I did. W-what’s one thing that you’re grateful for? Your…” “My wife.” “Okay, well, there you go. You know, your wife.” “My whatever. My kids.” “Okay, cool. That’s two. You know, we’re on a roll. Don’t stop.” You know what I’m saying? And I think that really starts to shift the dialogue where you start to realize, you’re like, “MS didn’t do that. It didn’t get rid of anything.”

[(31:11)] Stephanie: Yeah.

[(31:11)] Luis: You know? It’s, it’s… For those of us that are on the side of, like, we, I had to burn it down. I had to, because it wasn’t just MS that I w-, me personally was dealing with. It’s sort of like that-, when you pick yourself back up, the resiliency, MS just, like, helped me have this, have the, an incredible life, which I’ve already had.

I just now see it because I live in this pl-, this place of gratitude and, and miracles all the time. I don’t really care if that s-, sounds weird, doesn’t register, that it’s not communicating with a man. Like, I don’t care, you know? But that’s partially my identity as a person, as a man living in LA. Like, I, I just don’t, you know?

[(31:52)] Stephanie: And the other, like, key thing to that, to, to living with gratitude and, and seeing the beauty in life because of the struggle, uh, I think there’s also this aspect of MS gives you a reason not to put things off till someday. Um…

[(32:10)] Luis: 100%.

[(32:11)] Stephanie: Yeah. Like, travel now, show up now.

[(32:14)] Luis: 100%.

[(32:14)] Stephanie: Do it with assistive devices. Do it with adapta-, adaptations, because we’re all in living with uncertainty, whether we realize it or not, right?

[(32:26)] Luis: I love that. That’s, that’s deep. Ooh, that-, I got the chills just hearing that. [Stephanie laughs] Thank you. And it’s like when I think about masculinity and strength, right? And, and I wanna touch on this. It’s like, is it stronger to be, to give up, or is it stronger to not give up and to actually, like, push[?] through, right? And to be like, what’s strength? Where does it come from? Inner or outer? Is it because you got a big old truck or whatever, a big car, or like you go to the gym? I’m like, “Cool, that’s how you define it? Well, I define it like this because I can’t do those things the way I used to.” You know what I’m saying? So like inner s-, inner strength…

[(33:01)] Stephanie: I do. That resonates so much. Yeah.

[(33:03)] Luis: Right? So inner strength really comes from with-, for me, came from within. So like I’m not looking to try to connect that to the masses. I mean, it’d be amazing, great, but I really wanna connect it with the people that hear that, that resonate with that, because that’s really what we all share in common.

And I, and what you said earlier about the MS community, it’s like I f-, I have found that in the MS community. They are like some of the scrappiest, most resilient, innovative, don’t give a poop people on the planet I’ve ever been around, period.

[(33:34)] Stephanie: And strong. And to your point, I love what you just said. Like, your strength may not be physical anymore, but it’s emotional, and it’s resilience, and it’s strength of character. Uh, and that is such a gift.

[(33:47)] Luis: Such a gift. I don’t think that peop-, but until you go through it, it’s just through, it’s just the way we see it. It’s the way I see it. You know, I can’t… You gotta go through it. But if you wanna go through it, there are people around that will help you, and that will, that will offer their advice or their story happily.

This podcast is doing that, you know, which is amazing, you know, that you’re actually creating a platform and you’re doing it. A lot of people talk about it. I’ve been one, that we want to do a podcast or, or create something episodic. But the fact that you’re doing it says so much because now, it’s-, not only is it media that can be circulated globally. Yes, there’s that, but you’re actually doing it.

So now it’s a platform for people to show up and be like, “Okay, cool. I’ll tell you what I know, you know, what I’ve lived.” And that’s go-, and hopefully somebody will hear it and will resonate, and maybe not in the MS world, but just in general. It doesn’t matter. Like…

[(34:42)] Stephanie: Yeah. Cuz really, honestly, the lessons that we’ve talked about here today apply to any kind of chaotic life event, right? Parenting…

[(34:53)] Luis: Always.

[(34:53)] Stephanie: …job loss, illness. Everybody’s gonna go through something, and I think that’s just part of the human experience, learning. And it teaches you so much about who you are and what you’re capable of.

[(35:05)] Luis: That’s what’s amazing. And people are like, humans are capable of so much. It… And, and also the whole idea about weakness versus strength and vulnerabil-, be-becoming vulnerable. It’s like, if you’re honest with yourself, then there really is no, like, you’re not… I mean, you can be vulnerable with anybody cuz you’re honest. You’re living from a place of honesty, and integrity, and sincerity. And it’s like, it’s not about your ego, man, you know? It’s like, it’s really about lifting whoever up that, that’s asking you for help or that shows up. It’s like, there it is. That’s what I mean. Does that make sense? You know what I mean? [chuckles]

[(35:40)] Stephanie: It does. It does. And thank you for being one of those vulnerable people who…

[(35:46)] Luis: Sure.

[(35:46)] Stephanie: …is willing to speak up, and share their story, and share their experience. And you know what? I, I do hope that there are people out there with MS, and especially men, who listen to you and give themselves permission to do the same. [background music]

[(35:59)] Luis: I appreciate you having me, you know? And, um, let’s continue our conversation and all this, like, work or whatever. Let, let’s just keep being kind to people and keep holding them up and helping them however we can, you know?

[(36:11)] Stephanie: Thank you, Luis. Thank you so much for being here today.

[(36:14)] Luis: Of course.

[(36:16)] Stephanie: Thank you for listening to this episode of the Can Do MS Podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS Podcast. Until next time, be well. Have a great day.

[background music]

[END]

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