Allie McGuire – The Reality Nobody Talks About. MS Warrior 50

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I wouldn’t even wish you’d understand. I just wish that God had a better plan. I’m so confused. I need a redo. A redo.

There’s something that’s inside of me that’s begging and begging and pleading. I just want to feel free. I just want to feel lovely. I’m surrounded by love that’s in pain. Can I wipe your tears away? Please don’t hurt me. I hate that it’s for me. I hate that it’s for me.

Hi, welcome to the MS Michigan Man 64 Podcast, brought to you by OLIPOP, proud sponsor of Hail Media and the MS Michigan Man 64 Podcast.

My name is Brian. I am the MS Michigan Man 64. I’ve had MS for the last 28 years. I talk about my journey living with this disease, as well as the journeys of other chronic disease warriors all over the world, just to try to help people understand what it’s like—the mental health part of it, the family part of it, and the employment part of it.

Today I am talking to a beautiful MSer that I actually met down in Louisville, Kentucky, when I went down to the MS Summit a couple weeks ago. Allie was diagnosed with MS back in 2020. She actually has a sister who has been diagnosed with MS too, and we’re going to talk a whole lot about that.

She is also the founder of AwareNow Media, which I think is an unbelievable platform and what she’s doing to help spread awareness about living with chronic disease.

Please welcome to the podcast, Allie. How are you doing today, Allie?

I am doing well. Thank you so much, Brian. It’s great to be here. Good to see you again.

Yeah, Allie, I had such an awesome weekend with you a couple weeks ago down in Louisville when you were the moderator for that MS Summit. I got to know you a little bit in those three days, and what you were telling me about AwareNow, I just think you are an awesome, awesome person who just happens to have MS. I just love everything that you’re about.

Thank you. Thank you so much. Yeah, that was really amazing. What better way to spend World MS Day than with an incredible group of people just sharing each other’s stories? Sharing that space was really, really special.

So, Allie, in 2020 you get diagnosed with MS. What was going on in your life? What kind of symptoms were you having that threw the red flags up that you knew something wasn’t right? You went to a doctor to try to get it figured out, and then they tell you that you’ve got MS.

Yeah. Well, I’ve always been a workaholic and, as usual, I was hovering over the keyboard at a feverish pace. Then, all of a sudden, my right eye had trouble seeing out of it. I was blinking my eye like, “What’s going on here?”

At first I thought maybe it was the onset of a migraine and maybe that was what the visual disturbance was. Very quickly, it moved from being blurry to being nothing, and I couldn’t see anything out of my right eye.

Again, being a workaholic, I’ve got no time for whatever’s going on. Jack, my husband, was like, “We’re going to the emergency room.”

I’m like, “Oh, it’s probably nothing.”

He’s like, “We’re going to the emergency room.”

So we get there, they take a look, and they say, “Let’s go ahead and have you see an ophthalmologist. Let’s start there first.”

I went there right away. I got in within the hour. The ophthalmologist looks and is like, “Allie, your eye is fine.”

I was like, “Well, that’s great, but I can’t see.”

She said, “Let’s have you go back to the emergency room with the prognosis of MS.”

That’s not the way I expected the day to go. Very quickly, it was an MRI scan and welcome to the world of MS.

Wow. My journey was very similar to that, Allie. Back when I was 27, I was a runner like you are. I was out on a run and I started tripping and all that. My vision started going all whacked out. I couldn’t even tell the difference between red, yellow, and green at a traffic light.

I was scared. Losing your vision at 27 years old—I was scared to death. I can’t imagine what you were going through.

It took me 10 months to get that diagnosis. I’m glad they figured it out really quickly with you. I was driving to work for 10 months with one eye shut because I couldn’t see. I was seeing double vision and all that.

When you were finally told that you had MS, did you even understand what you were being told?

I did. Unlike many people, I knew exactly. My sister has multiple sclerosis. She was diagnosed far earlier than I was. She’s been living with MS for over 20 years now.

There was part of me that was comforted with the diagnosis to say, “At least I understand what it is. It’s not something completely foreign,” because I watched my sister and her ups and downs.

At the same time, I was terrified because I do know that it presents itself so differently in different people. Was my journey going to be like her journey? Was it going to be better? Was it going to be worse?

I think a lot of people who get diagnosed with MS go through this where they say, “Oh, now it makes sense.”

For years before, there would be things going on with my body and I’d be like, “Eh, it’s no big deal,” mostly because I just didn’t have time to address it and I didn’t want to address it.

But then when you get the diagnosis, you look back and say, “Okay, now that mysterious thing—why is my hand numb? Why does it hurt when I sit down to use the bathroom? Why do these things happen?” So that was nice to know.

Let me ask you this, Allie. You’ve got a sister who has been fighting this disease for a long time, and now you’re getting diagnosed with it. What was going through your head?

Because you had an understanding of it, do you think that helped you? You understood what your sister had been through, so you knew what you were up against. Did that help you mentally? Like, “Okay, I’ve got MS. My sister has it. I know what she’s up against. Now I’ve got it, and I’m going to attack it and commit to fighting this thing.”

Was it easier to understand because you had your sister?

For sure. While it was completely unexpected and I was very much blindsided by it, I do feel like, because it wasn’t something completely foreign to me, it helped.

It’s different from the outside looking in. When you’re inside looking out, of course it’s different. But I do think it was helpful. I knew what I might expect as opposed to being completely in the dark with it.

What did they do with you as far as your DMTs?

Well, the wildest thing is that where we live in Owosso, Michigan, it is one block from the Memorial Healthcare Institute for Neuroscience. There are people who come from all over the country to see these doctors. My doctor is Dr. Rany Aburashed.

The fact that I was one block away was kind of wild—from the emergency room and then also to my neurologist.

Right away, Dr. Aburashed got me on a DMT. For me, it has always been, since day one, Tysabri. I’ve been on that monthly infusion for these past six years now.

It’s treating you well? Your body—you don’t have any bad side effects or anything like that?

No. Since the initial scan, every MRI I’ve had since then, no new lesions. To know that it’s doing its job in terms of fire prevention—no new fires have started—is great.

Of course, it’s managing the symptoms. There are good days and bad days, like any of us with MS have, but so far, so good. Fingers crossed.

Actually, I just came back from an infusion today.

And you knocked it out. You’re here sitting and talking to me. That’s awesome.

How did this disease affect you mentally, and how did you handle that, Allie? I know back when I was 27, I never really addressed the mental health part of it, and that was a big mistake by me. I was this big macho guy who had just played football at Michigan, 6-foot-5, 300 pounds, and I’m like, “Mental health, blah, blah, blah.”

I think that was a huge mistake.

Yeah. You know, the moment we lose something is the same moment that we would do anything to get it back. The things that we took for granted, we miss so much so quickly.

For me, it was on the mental side of things—the brain fog, forgetting things, not being able to find words.

Just like you were saying about how you identified yourself physically, the way I identified was all verbally. It was my voice. It was my everything—spoken, written, all of the things.

For me, the hardest hurdle on the mental health side was just giving myself grace. Giving other people grace, you can do that all day, but to give yourself grace is really, really difficult.

Especially when that was my thing. That was my expertise—speaking, writing, and talking.

Where that came to a head one day was when I was having a conversation with one of our partners. We have a really good relationship and we’re really close. We were having this conversation, and it started to get really emotional. It was about a really emotional subject.

I was speaking and, all of a sudden, I started stuttering and I couldn’t get the words out, so much to the point where I started crying.

When something like that happens, that side effect of MS, when you get into that stage where it’s hard to express yourself, it just gets worse and worse. It almost spirals out of control a little bit because then you’re panicked and you can’t say the words, so it gets worse and worse and worse.

I ended the call, and we had the conversation on a different day. But that was really hard for me because my words are my everything.

I’ll probably get emotional right now because what if I can’t speak? What if I can’t be everything that I’ve been before?

I was a performance poet, Brian. I would get up on stage and do the things, and everything was by memory. I can’t do that anymore.

So the mental health side is saying, “Okay, I’m not this version, but I’m a different version of me. Can I be okay with her? Can I give her some grace? Instead of saying, ‘Why can’t you do this?’ can I say, ‘Good try. Good job for trying.’”

I know the mental part of this disease has been the hardest part for me, Allie. The physical part sucks. I always say that, but the mental part has always been the hardest part because you never get a break from it.

You wake up in the morning and you know you have MS. Then you fight all day long with whatever it does to you, and at night you go to bed knowing that you have MS. You never get a break from it.

I think that’s the hardest part of this—the mental part.

Like I said before, I didn’t address it for the first 10 or 12 years of my diagnosis, and it was a huge mistake. I think that should be part of the initial diagnosis.

When you get diagnosed and a doctor is telling you that you have MS, I think part of that diagnosis should be a referral immediately to a mental health counselor, psychologist, or something, because this disease is never going to go anywhere.

You’ve got to figure out how you are going to understand it and deal with the mental part of this, because the physical part is only one side of it.

I 100% agree. I feel fortunate that my doctor, Dr. Aburashed, turned fear into fascination.

The way he would talk to me, he knew how to explain what was happening in a way that would make sense to me. He used a lot of metaphors: “It’s kind of like this.”

It got to the point where instead of fearing it, I became sort of fascinated. I was like, “Well, that’s fascinating. Explain that to me.”

He really was very, very helpful. I feel so fortunate because I know a lot of people do not have that experience. So many don’t.

I feel like I’m this spoiled person to have this incredible doctor in my life who’s really just been with me since day one of this. I’m really lucky.

It is important to have a provider that you have that relationship with and that you like. I talk to a lot of people who don’t like their neurologist. They think they don’t listen to them. I say, “You’ve got to find a new neurologist. You’ve got to find somebody that you like.”

I’ve had three neurologists in my life with my MS, and two of them have been incredible—the one I’m with now and the one who first diagnosed me.

It is so important to have a neurologist you like, trust, and who is going to be there for you when you have questions.

If I had a question for my neurologist right now, I could send him a text message. I have his personal cell phone. The guy will answer me within an hour.

That is so important for me, knowing that I’ve got him in my corner, that he’s always going to be there. It doesn’t matter what time of day. It could be a weekend.

I think it’s important to have a doctor like that, and it sounds like you have one up in Michigan like that, Allie.

Yeah. You said a word that’s really important, and that is trust. Someone that you can trust.

You look at all these ads you see on TV for this med or that med, and you can read all your information. For example, my DMT, my treatment—it’s not because of something I read or something I saw on TV that said, “Oh, that’s the one for me.”

It was my neurologist. I trusted him.

That’s what MS is all about, though. I think it’s trust on a lot of different levels. It’s trust of your treatment, which is a result of trusting your neurologist, but then there’s trusting yourself—learning to trust yourself again and trust this body that’s different than it was.

Yeah. It’s like your new normal.

Every time I had an episode, I might come back almost to my baseline after the Solu-Medrol, but it wouldn’t be exactly back. I’d be like, “Okay, I guess this is going to be my new normal.”

I’m going to have to get adjusted to it and figure it out. If it took something away that I did a certain way, then I figured out a way to do it a different way.

I think a lot of us who have chronic disease, especially people with MS, that’s what we do. We figure it out. If you can’t do something, you can still do it. You just might not be able to do it in the traditional way that you normally did it, but you can still do stuff.

Yeah. I agree. It’s about finding new tools, right? We all have to have our toolbox because you have to be ready.

MS presents differently in different people, but it also presents differently to people on different days.

So what tools do you have to work with?

That’s what I love about the MS community—that camaraderie and that instant connection. Being able to share, “Hey, have you heard about this? Have you heard about that? Well, this works for me.”

Going back to MS Rising and all of us being brought there together, you know how nice it was to not have to explain yourself because you have people who get it.

You don’t have to walk them through, “This is why I can’t do this,” or, “This is why I’m having a hard time doing this.” Everyone just knows.

To be held in a space like that, that’s really special.

It’s a beautiful thing. I wish the whole world understood chronic disease like we understand ourselves.

I think they can understand us if they just listen to us. Understanding that MS is different with everybody and that it presents differently with people is important.

Whether it’s family, friends, or employers, just understanding what this disease is and how it presents in people—and that it can be different—that’s what I wish.

For sure. What I found interesting is that after being diagnosed myself, there was almost a heightened curiosity for other people who live with different chronic conditions.

I live in this MS world, and then you meet someone who has cerebral palsy and it’s like, “Tell me. I want to learn more about that.”

We find these intersections like, “I hear you and I feel you there.”

Being able to create more connection has been a fascinating part of all of this.

Let me ask you: I know you’re married and you have kids. How do they understand the disease?

Your husband already knew your sister had MS, but now you have it. How did he understand the disease back when you got diagnosed, Allie?

He just learned along with me.

I had the heads-up with my sister and being able to watch her move through life with MS. But Jack has really just been learning along with me and being super patient and super kind, asking questions.

He’s been so supportive, and the kids as well. Our kids range in age from seven to 26.

Each of them has come to know MS as something that’s not a death sentence. It’s a sentence, but there are other sentences that came before and other sentences that will follow. This was just one of those game-changing sentences.

You said something, Allie—it’s not a death sentence. I tell people that all the time.

I have accomplishments that I accomplished before MS. I played in three Rose Bowls and a Gator Bowl. I went to Michigan and got a scholarship. I did all that, and then I got diagnosed with MS.

Then I have all the accomplishments that I did after my diagnosis. I worked 20 years with this disease. I pat myself on the back all the time. That’s a huge thing, to be able to work with this disease in regular society.

I raised two kids. One’s 27, one’s 24 now, and they’re very, very good adults. They’re working, and I did that. MS is never going to be able to take that away.

You have accomplishments that were pre-MS that MS is never going to be able to take away. Then you have accomplishments that you’re going to do with this diagnosis, and they’re going to be some badass things.

I know people who found out they were artists after their diagnosis. They got really big into art, and some of the things they create are freaking unbelievable. They never even knew they had that talent.

But it’s because of MS that they found themselves. They found these new things.

Yeah. To that point, we never would have made our film, our documentary about MS, unless I’d been diagnosed.

The only reason we made it is because, after I was diagnosed, my friend said, “Hey, I’m going to run the marathon in your honor to raise awareness for MS.”

For me to say, “That’s amazing, but why?”

And for her to simply say, “Because I can.”

That conversation would have never happened had I not been diagnosed.

From that conversation, I found that maybe I could run. And I did, and I do now.

Because of that conversation, because of the diagnosis, we now have this beautiful documentary that we get to take around the country and share with communities around the world.

It wouldn’t have happened if I hadn’t been diagnosed.

I have this beautiful tattoo of a butterfly on my back. I never would have gotten that ink had I not been diagnosed and realized the butterfly is a symbol for MS. So I have MS to thank for my ink.

That’s a great thing I wanted to talk about. I want you to talk a lot about AwareNow Media that you created. You’re the founder of that platform.

I saw your documentary. I want you to talk a little bit about that. That is such a powerful documentary.

When we’re done recording and your episode posts, I’m going to post your documentary on my social media. But talk a little bit about AwareNow Media and what you’re doing with that, Allie.

For sure. AwareNow Media—our motto is, “We will no longer ask for permission to change the world.”

When Jack and I got together, we found each other later in life. Our family is a bit of a Brady Bunch family. He had kids, I had kids, and we had a together kid.

When we came together, we both had careers, jobs, and paths of our own. We asked each other, “Why is it never enough?”

It didn’t matter the title. It didn’t matter the salary. It was never, never, never enough.

When we thought about it, what we realized was that, at the end of the day, we were the only ones winning.

How could we make wins for other people? Perhaps that’s why it was never enough. We were more self-serving as opposed to being of service.

We said, “What can we do? These six kids—how can we inspire them? How can we do something and be something more and inspire them to do the same?”

That’s where AwareNow began.

We said, “What do we know how to do? We know how to tell a story. We know how to tell one hell of a story. Let’s do that. Let’s tell other people’s stories. Let’s help them be seen. Let’s help them be heard.”

There was a time in my life, a season, where it was like, “Oh, Allie’s on stage. Oh, Allie’s name is in lights,” and all the things.

What I have found to be so much more satisfying is not to be on center stage, but to be the one backstage giving the cues and watching that person be seen and be heard, sometimes for the first time.

That became what I wanted. That’s what I craved.

It wasn’t about Allie being center stage. Enough of that.

That is what this platform is built for.

We have a website. We have a magazine with a new edition every month, podcasts, videos, and now we’re getting into documentaries.

It’s really about staying aligned with being rated “O” for original—organic content to raise awareness—and finding all the different ways that we can get creative at this intersection of artistry and advocacy.

What can we do there to help others be seen and heard?

I really feel like we’ve lost our way so much as humanity in general. We thought, “How can we find each other again? How can we find our way back?”

I think it’s through storytelling. It’s about creating that connection.

There are far too many silos. I don’t care if it’s political, religious, or whatever. We have to find a way to unsilo ourselves and find each other again.

I think storytelling is everything for that and perhaps our most powerful tool that we have as a species.

If you think about it, facts and figures are powerful, but they can be easily forgotten. But stories—when you feel something, you can’t unfeel it. You can’t forget it. Feelings you remember.

It’s like they say: people will forget your name, but they will never forget the way you made them feel.

That’s what stories do.

I love that, Allie. That’s kind of what I had as my vision for this podcast.

I could have done a podcast and it would have just been me talking, but who wants just that? It’s not about me.

I have MS. I want to talk about my journey, but I want to bring other people’s journeys into it. Let them tell their story because everybody has their own unique story.

I’ve had people tell me, “Well, my story is boring.”

No, it’s not.

Anybody who has a chronic disease, their story is very interesting because everybody is unique—how they handle it, how they were diagnosed, and how they learned about it.

I think all of us coming together with what you’re doing at AwareNow and what I’m doing with this podcast, it’s like we’re all a team.

We have to spread awareness about what it’s like and spread these stories. Spread these stories. Spread these stories of people thriving and living great lives even though they have a diagnosis of MS.

Yeah. It’s so important because that’s the hardest thing, right? This feeling of isolation, feeling not connected.

If we can use storytelling as a salve, I think a degree of healing can be found there—a large degree of healing just by being heard.

I have people all the time who tell me, “This is the first time that anybody has actually wanted to hear my story.”

I’m like, “Well, hey, now everybody gets to hear it.”

You want to tell your story, you tell it how it happened to you. Nobody is going to chime in and tell you that you’re lying or you’re overexaggerating. This is your story.

I think people really, really appreciate that, Allie.

Absolutely. The other thing, too, is that there are wins on both sides.

To share your story offers an opportunity for healing. For someone else to hear your story offers them an opportunity to heal.

It’s such a gift. Every story is a gift—to the one who shares it and the one who hears it.

Allie, I’ve really enjoyed this conversation, and I know that we will do another episode in the future.

Is there anything that you want to tell anybody who might be in a similar situation as you? Maybe they were just diagnosed four or five years ago, and they’re still scared and still trying to figure things out.

What would you say to them? That you’re going to be okay. The sun’s going to come up in the morning. You just have to take a breath and you’re going to figure this out.

What would you tell them?

I think I would say, quite simply, just do what you can because you can.

Whatever you can.

We all have something we can’t do, but for everything you can’t do, there’s something that you can do.

It’s all about how you’re going to look at it.

With the diagnosis that you’ve been given, the knee-jerk reaction is to feel like you’ve been wronged, like you’ve been robbed of these things.

But when you can look at it through a different lens, it’s like, “But what have I gained?”

I’ll tell you what I’ve gained from MS. For the first time in my life, I slowed the hell down, and I needed to. I was going too fast for my own good.

I started to appreciate things more. Things that were big deals to me before—it’s like, “Yeah, guess what? I can still see out of this eye. Sweet.”

You just have to be able to take the wins.

I think that’s the opportunity that any degree of adversity offers. Anytime you have adversity, in whatever format it comes in, it’s an opportunity.

The other thing that I would say is that we all have something that we can’t outrun.

Be it MS, breast cancer, anxiety, diabetes—whatever it is, all of us have something we can’t outrun.

We’re all running up a hill of one kind or another, but we don’t have to run alone.

We don’t have to run alone.

You’re not alone.

That’s what brought me the most comfort, to say, “I don’t have to figure this out on my own.”

That, I think, is the biggest virtual hug I can give anyone—just to say you’re not alone. Ever.

I love that, Allie.

I found social media only a few years ago. I’m 56 years old. I’ve been dealing with this disease for 28, almost 29 years, and I did it alone.

When I found social media and I found you, and I found Adam, and everybody else out in the community, and now I’m starting to meet them—you’re not alone.

You’re absolutely right.

If you go on Facebook, if you go on TikTok, there’s a huge community on TikTok that I’m part of. We all have MS and we understand each other.

I think community is so important.

You’re not alone.

I love that, Allie.

Yeah. It’s important to know and then to remember. Sometimes I even forget and I have to remind myself, “I’m not alone.”

All right, Allie, I’m going to start wrapping it up.

I really want to thank you for joining me today and sharing your journey. I’m looking forward to doing some more collaboration with you on AwareNow and all that. I’m going to have you back on.

I really, really want to thank you for coming on today and talking with me.

Well, thank you so much for your time, Brian. It’s been awesome. And thank you for being who you are.

All right. Thank you. Thank you, Allie.

All right, I’m going to get going. Don’t forget to hit the subscribe button and get some OLIPOP. Man, this stuff is really, really good. It’s a probiotic. I do not drink soda pop anymore. Great alternative to soda pop. Pick some up. It’s really awesome.

I’m out of here. This is the MS Michigan Man 64. I am out.

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