Episode 122 Part Two - From Athlete to Advocate: Brian Wallace's Journey with MS

In the second part of my conversation with former Michigan football player Brian Wallace, Brian shared his journey of coming to terms with his diagnosis and the emotional turmoil that accompanied it. He opened up about the initial fear and embarrassment he felt, especially as someone who had always been athletic.

He expressed the difficulty of disclosing such personal news, particularly in a work environment. For nearly a decade, he kept his condition private, only revealing it when it became unavoidable.

Throughout our conversation, we touched on the loneliness that often accompanies chronic illness. However, Brian has recently found his voice on social media, with his TikTok channel. Initially hesitant, he discovered that sharing his story not only helped him but also connected him with others facing similar challenges.

He discussed the duality of his experience with MS - what it has taken away from him and what it can never take. He emphasized that while the disease has impacted his physical abilities, it cannot erase his accomplishments or the essence of who he is.

As we wrapped up, Brian expressed his desire to start a podcast to further advocate for those with MS and to educate others about the realities of living with the disease. He is passionate about breaking down the stigma and ignorance surrounding MS, and I am excited to see where this journey takes him.

DISCLAIMER

The information in this podcast is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment.

Links and resources:

Learn more about Disrupting MS Together

Connect with Brain Wallace on TikTok

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Find out more about the DMAT Fitness Training program

You can find Kathy Chester at:
msdisrupted@gmail.com
disruptfitnessgym@gmail.com
moveitorloseit109@gmail.com

Connect with @msdisrupted on Instagram, Facebook, TikTok

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Transcript

Kathy Chester: Hello, I'm your host, Kathy Chester, and welcome to the Move It or Lose It podcast, a podcast about all things that move the mind, body, and soul. The Move It or Lose It podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even play one on TV. So please consult with your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move It or Lose It podcast. All right guys, here we are with part two, our interview with Brian Wallace. We are talking about his diagnosis with MS and Brian is also an alumni of Michigan and played for University of Michigan football. So Brian, welcome back again to part two.

Brian Wallace: Thank you. How you doing Kathy? Thanks.

Kathy Chester: I am good. Absolutely. Back in our Michigan gear. So when you were diagnosed young 27, who were the first people that you felt comfortable even telling that you had multiple sclerosis?

Brian Wallace: Well, I was actually engaged at the time. I wasn't married yet. So I believe, I think the first people that I told at the diagnosis was my mom and my ex-wife and my brother. He was dating, I believe, his wife now. He's still married to Jodi. So she knew too. So it was, it was immediate family and my fiance.

Kathy Chester: Yeah. So tricky. So I think back then it was a scary thing to talk about.

Brian Wallace: Yeah, there's so many emotions that go through you when you hear that word, multiple sclerosis, and I kind of had like a feeling of embarrassment because how can that happen to somebody that was so athletic as me, you know? confusion, you know, there's a lot of emotions that's running through your head. So I didn't want anybody to know, you know, I have a very tight circle of friends from high school all the way till now through college and all that I only have certain people that I talked to my whole life and that that circle of friends they found out quick So they were there to support me too. But other than that, I mean, I was working for the state of Ohio. I told nobody. I told nobody where I worked.

Kathy Chester: Were you afraid of losing your job?

Brian Wallace: I wasn't afraid of losing my job. That wasn't a fear, but I didn't want the discrimination part and to be treated differently part.

Kathy Chester: Yeah.

Brian Wallace: So I just kept it to myself for as long as I could. I mean, it gets to a point where you almost you can't hide it. Exactly. So that was probably about maybe eight to ten years into my journey with this disease. And then it started coming out that, you know, if I missed work a couple of days, I was getting an infusion. Right. You know, so then that's when, you know, I mean, for my first 10 years, I never even had FMLA paperwork filed. Right. I literally I didn't want anybody to know.

Kathy Chester: Yeah, totally understand. I even now, like I said, with the support groups, men and women are still concerned about telling their employer or friends, and they're still not not ready to tell people.

Brian Wallace: And, you know, it's a sad, sad thing in the 20 And actually, it's going to be 27 years in a few more weeks, I got diagnosed in October. But in the 26 years that I've been doing this, like I said, I stayed quiet for the first you know, decade or something of doing it. But I sat there and watched. You know, there was other people that had disabilities that I worked with, and I watched how they were treated and I watched how they were discriminated against. And I'm like, man, that's not right. So I learned so much along the way. You know, what is an ADA requirement for disabled people? And, you know, if buildings aren't in code, we have a voice to speak up. Right. you know, we don't have to work in a building that's not safe for us. And it's not safe for us. We I learned to not be afraid of fighting for this disease. You know, that's not my fault that I got it. I didn't ask for it.

Kathy Chester: Which is a big thing. I think you just even saying that because I know people still deal with that. I remember feeling guilt of that feeling guilty with the kids feeling like, wow, like this is great for the kids that I have this and just that guilt. And then finally, years later, the same as you thinking this is insane that I would feel guilty about a disease that I have no control over. And so you get to that point. So I'm really glad that you did and were able to have the support then of the people that you told. When did you decide to go on TikTok and start being more vocal? Because you are a presence on TikTok, sir.

Brian Wallace: I appreciate that. I, you know, I, I've only been doing this for a few months. I started doing it in February and I had my daughter to thank for that. Cause she's been on me for probably about a year. Cause I'm not a social media person. I don't even have a Facebook, Instagram, none of that. And she's telling me, you know, you got to get on social media and start talking about your disease and how you deal with it. Your story is amazing. And I'm like, eh, nobody wants to hear from an old guy. Not true. So she talked me into it and I just started doing it, playing around, you know, and, and then I started getting comments, you know, asking me questions about it. You know, after the six months I've been doing it, it's actually really kind of fun. It's actually kind of rewarding because I've met so many people that have this disease and even other, other chronic diseases. I met people that have migraines, fibromyalgia. There's so many things out there people are really suffering with. I mean, my wife has fibromyalgia, so I understand that one a little bit. But there's so many things that people are dealing with that are painful. Yeah. You know, and they're afraid of losing their job. They're afraid. They're afraid of talking about it.

Kathy Chester: Absolutely. And mental health issues, the loneliness of that and people not understanding that still. And I think when we have a platform like we do it, it opens up that ability to understand and empathize with so many that are struggling. So I listen to a lot of your TikTok videos, and I just really love what you're doing in that. I think it's a big help for us and for the ones that we're able to help and to reach. And I thank your daughter for getting you into that. So I saw a video that you did that you talked about what MS could not take away from you. And so I want you to go there and then I want you to go into what MS has taken away. You can go either one first. I'll let you choose.

Brian Wallace: Well, I'll talk about what it had, what it will never be able to take away from me. And the reason that I do this is like when I played football in Michigan, Bo Schembechler, he used to tell us in a full team meeting, the two years I played with him, he'd be like, man, Yeah, you play for the University of Michigan and whatever you accomplish in school here, you know, on the football field, nobody's ever going to be able to take that away from you. You know, you win a Big Ten championship 50 years from now, nobody can ever take that away from you. So that's kind of the philosophy that I've like taken throughout my life. So I have all these accomplishments that MS will never, ever be able to take away from me. You know, they'll never be able to take away the fact of who my parents are, my brother is, what defines me, you know, as my work ethic, how hard I work, the Rose Bowls that I went to, the championships that I won. MS will never, they will never be able to, you know, I mean, they're never going to be able to take these rings away from me. You know, I'm going to have them forever. you know that MS will never take away the accomplishments that I have completed. And even after diagnosis, the stuff that I've done, it's never going to take that away from me. I am so proud of the fact that I've worked in the workforce for 26 years with this disease. Yeah, that is a hard, hard thing to do. I think that was that's been a harder thing than the four years of playing football in Michigan.

Kathy Chester: It's an amazing accomplishment for that long that you've been able to be in the workforce.

Brian Wallace: Yeah. And then, you know, on the flip side, like you said, what MS has taken away from me, you know, the obvious things, you know, my ability to walk, run, see. But I adjust with it as things change. I've always stayed positive with this disease. I've never been mad at myself for not being able to do something because it's not my fault. It's frustrating, absolutely. We'll talk about a big change for me just within the last year. I love going down on Lake Erie. I had a jet ski up until this spring because I just got to a point where, you know what, I don't think it's safe for me anymore. I had that discussion with my wife and she said she agreed with me and I'm like, you know what, it's time to sell it. So you have to be able to accept that you're going to have to make adjustments for the rest of your life.

Kathy Chester: Yeah, understanding that you'll grieve. I tell this a lot of times to the newly diagnosed. It's not a one and done grieving. You know, there's a there's sometimes big grieving and there's sometimes like we're talking about, like accepting like, yeah, this is going to change this. I'm not going to be able to do anymore. And it really sucks because it's like, I have to I have to give this up. And I'm asked, dang it. All right, fine. And there will be adjustments. You're right that we have to make that we have to give up because that's just not going to be our thing. But we'll find something different. And so I love that, that you keep that positive attitude. And when it takes something away, it's like, OK, but I can do this instead. And so I think that that is so important for us to have. The Move It or Lose It podcast is proudly sponsored by Disrupting MS Together, designed to help you take control of your wellness while living with multiple sclerosis. Disrupting MS Together aims to increase mobility through functional movement, Coaches Kathy Chester and Molly Witt see to connect the mind, body, and spirit with guided, focused online workouts and coaching. You'll get targeted workouts sent directly to your email and Q&A sessions with licensed coaches, early access to podcast episodes with experts in the industry, group workout sessions through Zoom, and curated content that you won't find anywhere else. Early bird pricing is only available for the pilot program. So don't wait, check it out now. The program includes a tremendous amount of benefit from seasoned coaches who also live and thrive with multiple sclerosis. Learn more and take the leap today. Visit www.msdisrupted.com to learn more and snag your spot now while you can. So tell our listeners why you moved back to Ohio.

Brian Wallace: Believe me, I didn't want to come back to Ohio. I don't hate Ohio State because I never lost to them. So I mean, why should I hate it?

Kathy Chester: Like the little dig.

Brian Wallace: Yeah. So I came back to Ohio because when I left for Michigan, just like every other 18 year old that probably plays at a big time division one, you make a promise to your mom that you're going to take care of her and your family if you make it to the next level. So I made that promise to my mom, you know, Hey, I'll take care of you. She, you know, she was a widow 47 years old when my dad died. So she was still young. So I, you know, I told her, you know, Hey, if I, if I get to the NFL, you know, you, you won't have a thing to worry about. Well, that didn't happen. So I graduated and I'm like, you know, I gotta go back, take care of my mom. So that's why. back to Ohio. And, you know, she just passed away a few years ago. So I don't have, I mean, I have no regrets about it. There's actually a lot of Michigan alumni that I actually played with that live in Ohio. One of my teammates, Elvis, the quarterback, he lives over on the east side of Cleveland. There's a couple other guys, John Jenkin, he played defensive tackle, he was a couple years younger.

Kathy Chester: That name sounds familiar.

Brian Wallace: Yeah, he's a Cleveland guy and he still lives in the area. Frank Petroff, he played defense tackle. He still lives in the area. He's a teacher. Eric Anderson, he won the Buckets Award. He's a teacher over on the east side in Ohio. Very cool. So, I mean, there's a lot of us around, believe it or not.

Kathy Chester: Yeah, that's really interesting. I just talked about this last night in one of the support groups that I lead is that feeling of of loneliness that happens. A lot of times people don't understand that, especially I'm married, you're married. And they're like, well, you're not lonely. You don't you don't get it. I'm single. I don't have anybody. I don't even have a pet. So how can you say you're lonely? And I'll often explain. I know I'm married. I know I have kids, but MS is A hard way to explain what you need is sometimes you feel like you're isolated in your own self and you don't want to talk about it anymore, especially when your caregiver is your spouse. It's like the last thing I want to do is complain again and again, this hurts, this hurts, this hurts. So sometimes I just want to retreat to myself because I don't want to complain again. It just gets a, that's a lonely area and you are sometimes in pain and you don't want to call a friend and say, guess what? It's me again and I'm hurting. So just in case you wanted to know, And so you get into a spot where you kind of retreat back and get very lonely. So what would you say about that? How do you feel about that area?

Brian Wallace: Yeah, so I never had to deal with that up until January because I've always and all that to communicate with. But since, you know, probably about a year ago, I was working remotely with my last job before they terminated me because of my past. I was working remotely. And even though I was working remotely, that was lonely. I mean, I don't know how people work remotely, you know. I know, I know. Because I've always been a people person. I mean, even I worked in a prison, I was around 2500 bad, bad people. But it was fun because I was around people, you know, so I've always been a social person. So MS is a very lonely disease, especially when you become to the point where you're homebound. You know, and I mean, I'm not homebound. I mean, I'm getting my truck and go drive around. But I mean, how much how much fun is that? Right. But so, I mean, I sit in the house all day and in the summertime I can go down to the lake.

Kathy Chester: Yeah, that's what I was going to ask you. You can you do that now, but you need help. Right.

Brian Wallace: Yeah, I can still go there by myself. But my wife and I go up there a lot when she's able to with where she works. Okay, but I can still do it by myself. But yeah, there's certain things that I can't do that I need help with. And I have friends that help me out up there. My wife helps me out all around the house here. I still do things like I can still do I'll still make dinner. You know, I'll still cut up vegetables, fruit for my wife. I'll still, you know, do laundry. I mean, unfortunately, I can't vacuum a house. Anything I can do, I mean, I'll at least make an attempt at it. Right.

Kathy Chester: No, I think that that's a really good thing. And I tell that to my husband. I'm still working, obviously. And I'll say, you know, whatever I can get done, I will absolutely get done. And he knows that and I think I would assume your wife knows that as well, that you'll be getting done what you can get done and I think there's. a release of guilt from that that we have to let go you know that it is lonely and there's a loneliness and I think you know admitting that I think helps a lot with a lot of the MSers who are just not not sure what's going on and they're not sure is this going to be forever and I always say you know there's some days that feel really lonely and there's some days that don't and there's days too that if you can just reach out to someone it takes that away and oftentimes I'll say, and even just getting some movement in will get those serotonin levels up. That'll help a lot as well. Any other stories that you would like to tell? Anything that you would like to share?

Brian Wallace: You know, I just want people to understand that MS isn't a death sentence. There's so many unknowns with this disease. You can have your first episode and never have an episode the rest of your life. And I know people like that. I got a friend that I played hockey with and his mom was diagnosed back when I was in high school. And she's 85 today and still can walk. You can't even tell. You know, well, just because you get diagnosed with this stupid disease doesn't mean you're going to be in a wheelchair tomorrow. Exactly. You know, if you're in your 20s, you might live 50 years and nobody can even tell. Exactly. And you can't worry about that every day, because if you do that, it's going to tear you apart mentally. You have to keep on living your life. After you hear those words, multiple sclerosis, You don't quit. You keep on moving. I didn't change. I was working for the state. I got diagnosed. I still work for the state for another 18 years after that. So just because you get that diagnosis doesn't mean that you have to crawl into a shell and just sit there. Live your life. Live it the best you can. And that's all you can do in the end.

Kathy Chester: 100%. So I guess my last question, Brian is, um, what would you say you run into someone newly diagnosed face to face and they say, I just got diagnosed. I have no idea what this means. I'm, I'm very afraid.

Brian Wallace: I kind of just had that happen to me. Uh, last weekend I was on Tik TOK and, um, I got a message. that a young girl was just diagnosed. She was 23 years old and she's scared to death. And I made contact with her and I talked to her all weekend. And I just told her, you know, this disease isn't going to define who you are. You have to, you know, I, and I, and I told her you have to have a plan. You know, you have to have a game plan. Yeah. And just because you have a plan today, and it's you know, it could be plan a tomorrow, you might have to go to plan B. And then next year or next month, you might have to go to plan C. I think that, you know, in the 26 years, I've probably been through the alphabet three or four times. And I'm on like plan quadruple C. Very true. And I would tell somebody that that's newly diagnosed You know, you you never quit and you just keep on going and going and going because if you quit, I think that's that's when you're going to be you're done. You know, I think this disease will eat you up if you stop fighting. Yeah. Now, I might be wrong. I don't I'm not a doctor. Oh, I agree 100%. I just think that if I would have just, you know, if I would have got that diagnosis at 26 years old, I would have just said, all right, I'm done with it. I'm done. I'd be in a nursing home and in a wheelchair.

Kathy Chester: Yeah. And would you agree to, especially now, we didn't have this then, but community?

Brian Wallace: Oh, God, yeah. I'm 54 years old. Back in 1997, the Internet was just starting to blossom. I graduated from college, smartphones weren't around, I was still typing my papers on a typewriter, you know, so technology was nothing like it is today. I wish it would have been because I had I don't think I met anybody. The only time I ever talked to anybody that had MS is when I was in the infusion center, hooked up to an IV, and somebody in the bed next to me, I'd be like, what are you in here for? And they'd be like, migraines or MS. And I'd just sit there for an hour and talk to them.

Kathy Chester: Right. That was that was it. That's all we had. Yeah, that's all. That's all right. Or some terrible support group. I had said I've said it a million times. Mine was in literally in a scooter shop and it was in the middle of one of their rooms. And all we looked at were wheelchairs. And I'm like, this has to be the most depressing. So I didn't even go to anything like that forever. And now I just think they're amazing that you can go to so many different ones and I just started one, and I'll have to get you on there, that is for newly diagnosed, and I asked other people to help me lead that, and the other one is for just women. Last thing, I promise, is what can we look forward to? What do you think you're going to, what do you want to do?

Brian Wallace: So, yeah, that's how I'm glad you asked that, because I, you know, like I told myself back in January when I was terminated, I said, you know what? This isn't it. You know, you're 54 years old. You're not done. You just got to figure this out. And then, you know, with my daughter kind of pressing me a little bit with this TikTok thing and getting me hooked up to that, I'm in the process of starting up a podcast. my format is going to be, you know, obviously that I played for the University of Michigan, played football and athletic and, and that this disease doesn't have to define you the rest of your life. You can define what MS is on your body. You know, you don't have to say, you know, I got MS, I'm done, you know. And that's another reason I want to do this platform is that I think that there's a lot of ignorance in society about this disease that they just, Don't get it. You know, I mean, I was talking to this poor 23 year old girl and you know what she does for a living and all that and what what her employer is doing to her. It's just sad. Oh, very much so aggravating. It's aggravating. And I'm tired of it. And you know what, if I have a voice, I'm going to make it hurt.

Kathy Chester: Absolutely. I love that. I love that, Brian. And it is something that is very much needed. And to have someone like you to stand up for those, and you're going through it right now, and to be talked about, because there is still so much ignorance out there. Brian, it has been an absolute pleasure being with you this morning and interviewing you. And once you get this podcast up, I would love to hear about it and interview you about how it's going. So I will look forward to that.

Brian Wallace: I would love to have an opportunity after I get it up and running, I'll come back with you and try to get that the word out that it's up and running. And, and I would really appreciate that.

Kathy Chester: Yeah, that'd be really awesome. Thank you so much for joining me for another episode of the Move It or Lose It podcast. It would mean the world to me if you subscribed and left a review. Remember, you can find me on Apple, Spotify, and YouTube. New episodes of the Move It or Lose It podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my website at www.msdisrupted.com. Until next time.