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All right, welcome to the AdaptX podcast where we have discussions with individuals who are building accessible businesses or products

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advocating for inclusion or excelling in adaptive sports. Our intention is never to speak on behalf of those with disabilities

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but rather give you an opportunity to amplify your voice, ideas, and learn strategies to scale our impact and help other businesses become more accessible.

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Today we're joined by Mary McManus, a mother, athlete, author, and motivational speaker, and I'm sure much more.

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Mary, thank you for taking the time to join us today.

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Thank you so much for having me, Brendan. This is really exciting and congratulations on launching this podcast.

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Thank you. Thank you. So to tell the story of your incredible feats now, we have to go back to the 1950s.

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Is it okay if I take a section of your book?

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Absolutely, please do.

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So Mary is the author of the book The Adventures of Runner Girl 1953,

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which I read over the last week ahead of this discussion.

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She mentions that the deck was stacked against her without warning on June 3,

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1959, I dropped to the ground in kindergarten class. Three years after contracting paralytic polio,

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shortly after coming out of my leg brace, my father became alcoholic.

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Nine years of emotional, physical, and sexual assaults followed until he died by suicide when I was 17.

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In December of 2006,

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I was diagnosed with post polio syndrome and told to prepare the rest of my life in a wheelchair.

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When you first got this diagnosis as a child, how did it affect your childhood?

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Well, from that moment on, nothing was the same,

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because, well, the first part was that I was initially paralyzed from the neck down,

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and then I started getting some movement back on my right side,

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but it took a very long time to get movement back on my left side. I was in a long leg brace.

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So basically, I missed the end of kindergarten year, and then

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when I started back in September, I was completely different because I was,

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as I call it, lugging a full leg brace that went into red polio shoes,

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that by the way, they have them in the Smithsonian.

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They were the shoes that people who contracted polio wore so that the leg brace could fit into it.

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So I went back to school on crutches in a leg brace.

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I was going for physical therapy three times a week, and my physical therapist was an angel.

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But from that point on, I really didn't have what one would call a childhood.

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I did have moments, very special moments,

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one in particular when I went to a camp that embraced all abilities.

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The first summer camp I went to did not, and it was a really very painful summer,

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but then my polio doc referred me and my family to this wonderful camp that's still in existence today,

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where they really embrace all abilities, Brendan, and I had a camp counselor who was an angel,

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and he encouraged me to compete in the end of summer Olympics.

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And I really was rather hesitant because I said, look, you know, I really can't compete with the

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other kids. And he said, well, there are only two other people competing in the butterfly,

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and so you'll be guaranteed a place on the podium.

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And he trained me. I was terrified to jump off the starting block, and it was just a really

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magical experience. And he said, don't look around. He said, you're going to finish last.

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We know that. But the courage lies in just being out there and competing. And I did,

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and I finished third, and I had a bronze plaque for it. So that was a shining moment in my childhood,

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but overall, I was fighting for my survival growing up in a house with my dad was alcoholic,

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my mom was addicted to prescription pain medication. So what I did to survive, Brendan, was I honed my

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intellect, and that's how I got through and kind of just left my body behind.

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Did I read in the book, were you a valedictorian in high school?

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Yeah. So how did your physical disability affect your schooling experience or your

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intellectual development? Intellectually, I was completely intact. And I worked very hard to

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really hone that. I mean, I'd be up in the middle of the night studying. I had a chalkboard in my

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room, my right notes, and I became obsessive compulsive about my schoolwork, but it enabled

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me to survive. And it was the one area where I received positive feedback, and I felt some

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self-esteem. And fortunately, I had some wonderful teachers. But as far as gym class, just forget it.

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Well, academics, probably also you were able to kind of control your own destiny. Whereas you're

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your polio diagnosis took some of the physical capacity away. You weren't able to, you had more

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control and ownership over your, for your academics. So I'm sure that was empowering.

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Absolutely. That's a very good point, Brendan. Yeah. So it was, it was the one place where I could

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succeed, excel, and you're right, having control because with my body, I was very, very blessed

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with a physical therapist and a physiatrist who specialized in the rehab of polio patients.

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So that was, that was vital. And I'm so grateful. He made sure that I didn't end up with scoliosis,

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and they did everything they could to get me to walk again and to be able to function at my

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highest capacity despite the damage from the polio virus. Yeah. And you say that,

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counselor, encourage you to kind of swim your own race. And in your book, I believe you,

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you thanked Dave McGillivary for giving you the opportunity to run your own race. So that seems

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to kind of be a theme. And it's a theme and inclusion and adaptive sports in general, like

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do the best with what you have and when you can do better, do better. And that's, I think that

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might be a Maya Angelou quote, but that, that just, it seems to be a sentiment that's pretty

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consistently echoed kind of in my industry or in my world at least. Yes. And I'm so excited that

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you're going to be putting out that book because that's, that's a theme in the book, you know,

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about how you can enable everybody, if you're putting on a road race to be able to, to, to shine

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and to be the best they can be and not be concerned with running another person's race or

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having to, and the most important thing is that they can excel in their own way. And that's one

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thing that I learned throughout this journey and through this sport of running is that I'm not

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competing with anybody else. It's just me. And a lot of times that's worked to my disadvantage

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when I started going after PR after PR, which is how I blew out my knee in 2014 now, but

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be that as it may, you know, it's, it's just really a joy to be able to be a part of this

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incredible community. Yeah. I think all of us are guilty of that with running. Once you start

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getting times in your head, it's, it's hard to dial it back in and it's so like a quantitative

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sport, you can either run a certain time or you can't. So it's like become fixated on these things,

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but it was super helpful to read your text as I was editing the book, because like year-lived

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experiences kind of gave me a different perspective as to how I could accommodate maybe some of the

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runners that were moving a little slower. So like you and I had talked about one of my concerns

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with our past races past June was I didn't, I wanted everyone to kind of start at the same time,

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but then it kind of ended up that some of our slower runners that took 75, 80 minutes to do the

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5k people were already kind of leaving by the time they finished. So I was like, huh, well, that was

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kind of anticlimactic. So maybe like you mentioned, like maybe giving them that half hour head start

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so they can still get the celebratory nature of finishing with crowds and congratulatory and like

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some of those stories were like the best of my participants, like someone post stroke doing his

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first 5k, but and like and we kind of missed some of that stuff because we had them all start at the

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same time. So I think it's definitely a great idea to give people the opportunity to start a half hour

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early if they choose to. So but it's kind of like, I guess with inclusion and universal design,

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it's just giving people the opportunity to make those decisions, not making the decisions on

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their behalf. So at least giving them the capacity to start early if they want to. Yes, absolutely

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Brendan. And that's, you know, I was really when I ran the bust in marathon, I was I was really,

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really anxious about the six hour time limit. And I talked to our team coach at Spaulding,

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and he said, wait, aren't you getting an early start? I said, what? What do you mean an early start?

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And now of course, Brendan, the regulations are very different for early starts and also for

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mobility impaired runners. So I feel very blessed that I had that opportunity to rumbost and because

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the regs have changed since then, but be that as it may, we got an early start. And it was the

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best thing that could have happened because I was out there with the field. And if if I wouldn't have,

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you know, I would have missed the experience that is Boston. And have you done Boston, Brendan?

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So Jacob and I just qualified about two months ago. So my team, Hoy duo, partner and I, so we

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ran the Martha's Vineyard Marathon, May 20th this year. And we finished in two hours and 55 minutes,

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which qualified me for my age category. So Jacob and I will run this April. So we're looking

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forward to it. How exciting. Oh my goodness, that's great. Yeah. So I know they do waves, right? So

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it's mobility or it's hand cycles, push rim mobility. Are they all grouped together or are

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they separate? Now or then when I ran it? When I guess, yeah, I guess when you ran it. Yeah. So

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in 2009, we started with mobility impaired. And then the the push everybody else started after

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us. So we went off first. And I remember seeing Ernst van Dyk whiz by me, which was really thrilling

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because he was the captain of our Spaulding team. For people who may not know, Ernst van Dyk is

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11 time now or 12. I'm not sure. But yeah. And he was the captain of our team for Spaulding. And he

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gave us a speech at our pre race dinner. And he said a disability doesn't end the life. It's just a

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new beginning. And it was really a thrill, you know, to be out on the race course. And then

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Brian Hall passed us and, you know, all the running grades. And you're like, I'm out here. And I said

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to our coach, Dominic, who got me the early start, I said, well, what do we do when they start, when

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the crush of runners come? Like, do we have to go over to the side? Like, what do we do? And he said,

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you have every right to be out there just as much as they do. So you just, you know, just do your

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thing. Yeah, it's funny that you mentioned the van Dyke quote, because actually when I read it in

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your book, I was also at the time working on a presentation on like models of disability. So

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like the medical model of disability versus the social model versus charity model. And, and I

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actually took that quote from Van Dyke that you included in your book. And I added it to my slide

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deck, because that's like, the charity model is kind of like, you have someone with a disability

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and you have their support staff. And the person with the disability is meant to be pitied, or

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you're supposed to feel bad for them. And you're supposed to praise the support. And that's always

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like, that was actually kind of one of my early experiences with inclusion was it always kind

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of felt weird when I was being like praised for coaching Special Olympics, or I was being like

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praised for being a peer buddy and best buddies. Because to me, it was like, you're kind of marginalizing

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the people I'm working with by saying that like, oh, I'm so nice for being friendly to him, it

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always just felt weird to me. So it was Ernst Van Dyk's quote on his lived experience of his

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life beginning after disability is a really important concept to like communicate to people

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that not all disabilities are perceived orally by those with disabilities. And for many people,

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their life changes drastically after for the better. Oh, I would, you know, you were asking

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about my childhood. And on the one hand, you know, oh, it would have been nice to experience

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what a, you know, normal childhood is like, whatever that is, Brendan, by the way. But

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having said that, I wouldn't trade that experience for the world because I wouldn't be the woman I

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am today. And the same thing with the diagnosis of post polio syndrome, I would not be who I am

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today had I not had that that life changing diagnosis where I discovered so much about

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myself, I started writing poetry, and I now have this incredible message for people that you're

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not your diagnosis. And, you know, so often, Brendan, people take on their diagnosis. And I

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it's such a blessing that, you know, you work with people who've had these different things happen

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to their bodies because they discover strengths that they never knew they had. And I, I take issue

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with the message that I received. And I really hope and pray that the post polio community and

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also other progressive neuromuscular diseases really change their philosophy. There, there was a

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philosophy of if I used it, I would lose it. And that was so counterintuitive to what I was

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experiencing. And initially, I needed to conserve energy. I had to go back into a leg brace. I had

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to use a cane. I did have to leave my career because the stress was too much. But on the other side

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of it, I was so blessed that I didn't stay at the post polio clinic at Spaulding because I found

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an incredible earth angel of a physical therapist at Spaulding downtown near my office who said,

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no, you don't have to spend the rest of your life in a wheelchair. Let's get you, let's, let's

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reconnect the mind and body. And she was phenomenal. I'm still friends with her today. She has a

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private practice up in Maine. So you know, that's, that's such a powerful purpose for me now to be

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able to say, okay, you were given this diagnosis. It looks grim. I had difficulty swallowing. I had

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difficulty breathing the limb from polio returned. They told me I needed to go on oxygen at night.

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And I took, like I took the leg brace because that helped to ease and conserve some energy and get

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me back on the path. But the sleep apnea machine, no, thank you. I did go on a semi soft diet because

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I was aspirating food into my lungs. But then I eventually through harnessing the power of the

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mind, body connection and also doing some of the suggestions like I was on a semi soft food diet.

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And I had to do a chin tuck when I swallowed. And I did all that initially. And then I was like,

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wait a minute, I cannot embody the person that I am today. And that's where writing poetry

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came into play, where I started visualizing something very different than what I was actually

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experiencing. And I knew about the mind body connection from Dr. Bernie Siegel. I don't,

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are you familiar with his work? Oh, he's incredible, Brendan. He talks about the power of the mind

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body connection and how we can heal. And he gives an example. And this is what really inspired me

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after the diagnosis of post polio syndrome. There was a woman named Evie McDonald who contracted

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polio as a child. And then she was diagnosed with ALS, Lou Gehrig's disease. And she decided that she

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wasn't going to die hating her body. And so she started sitting before a full length mirror in

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her wheelchair. And she started loving every part of her body. And she started visualizing and she

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started connecting with her body. I think she also was an abuse survivor. And she's one of the few

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documented cases of complete remission from ALS. And hearing that story really inspired me to start

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loving myself, to caring for myself. And I was blessed to not only have the physical therapist,

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but a personal trainer who believed that she was working with a Parkinson's patient who was 20 years

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older than I. And she said, you are way too young to not be able to get off a couch or the toilet seat

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without assistance. So I've been very blessed with people I've met. Between your initial diagnosis at

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five and the diagnosis of post polio syndrome at, was it 53? Yeah, what was that 48 years like?

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Was post polio syndrome on your radar? Did you notice yourself kind of like progressively losing

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motor function or anything? Or kind of, I guess, what, what encouraged you to seek out that diagnosis?

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So no, I didn't know about it. I, the first time that I heard about the post polio syndrome

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diagnosis, I had reconstructive leg surgery. What happened was after I had twins, my left leg, which

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was the more effective polio leg, started to bow. And so my knee was bone on bone. And the surgeon

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that I was blessed to come across, Dr. Don Riley, when I went to see him, I had seen him for some

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other issues. I said, what are we going to do? I'm in a lot of pain. He said, well, you're like 38,

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at the time, you're way too young to have a total knee replacement. So I can offer you a femoral

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osteotomy. And so he did, he corrected my leg. He corrected the bow in the leg and he realigned

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the whole leg. He was also an electrical engineer before he became an orthopedist. So he developed

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this, which was really cool. So anyway, I'm there for my post op visit. And this is so true to

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form, Brandon. He says, McManus, we had a great relationship. He said, I need you in the office.

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I said, well, is it my appointment time? It's a little early. He said, no, I need your help.

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Long story short, there was a woman in the office who had post polio syndrome. Her husband was a

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veteran. He needed to do corrective surgery on her and to ease her pain. And he needed me to find

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services to take care of her husband because she was a caregiver. So that was the first time I heard

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about post polio syndrome. And I never really thought about it. Excuse me. And then I started

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feeling not well. I noticed that I was extremely tired. I was in a lot of physical pain. And I

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just felt I was getting weaker and weaker. And I had no idea what was going on. I'd be at the VA

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and in between patients, I wondered, am I having a stroke? Because I actually had numbness and

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tingling, which was from a dispressing on a nerve in my cervical spine. And so finally,

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after about 10 years, I said, okay, I'm sick and tired of being sick and tired. I need to figure

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out what's going on. And I googled post polio syndrome. And that's how I was led to Spaulding.

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And I do want to say I am so grateful to them because I did take my first steps on my healing

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journey there. They did offer a lot of compassion and support. I had occupational therapy. I learned

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a lot about energy conservation techniques. But they could only take me so far because of their

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view of what post polio syndrome was all about. They didn't believe in neuroplasticity or that

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muscles and nerves can actually reconnect. I wonder if that's changed. I wonder if they've

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kind of made a universal change towards that approach or whether it's still consistent. Is

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there still a post polio clinic there? There is. There is. And actually, interestingly enough,

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one of the physical therapists there, my husband and daughter hired as a personal trainer. And

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he was great in terms of getting them back into running initially. My daughter had a healthcare

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concern. And so he was great getting them back. But when we were at the Providence, Rhode Island,

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Half Marathon, and he was there to cheer them on, and I was there to cheer them on. And I could tell

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from talking with him that there is still very much in the cautious model. Because he even said to

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me, and God bless him, Brendan. I really, I'm not being judgmental or anything because people don't

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know what they don't know. But he saw my journey. But he said, have you thought about using walking

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sticks? And I was like, why would I use walking sticks? I mean, I want to get back to my running.

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And he met well. But so he's a physical therapist there. And I know the physiatrist there when I

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went back after my knee injury in 2014. Now, we're nine years post that. But when I went back

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after I blew out my knee, he told me I should never have started running. I should stop running.

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I was going to need a total knee replacement. But I'm hoping maybe somehow, some way, that they will

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you know, that they will change their stories. And also to Brendan, the mindset of a polio survivor

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is, you know, we really felt victimized by the disease, the way it happened and also

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the way society viewed polio. So it was a hard mindset to overcome. But yeah, my hope is that

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at some point, they're going to they're going to make that shift. Yeah, you mentioned in the book

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having an initial conversation with a doctor who kind of attributed your symptoms to like PTSD and

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like kind of that's all in your head. Yeah. What was that like? And then maybe can you juxtapose

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that to like the validation of receiving a diagnosis? Like was was having a label to it useful?

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Oh, absolutely. Absolutely. I mean, yeah, I mean, I do, I did suffer from symptoms of post-traumatic

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stress. There's no two ways about it. But I needed something a lot more. And it was so validating

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to have somebody say to me, listen, you know, your body is experiencing the residual effects

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of having contracted childhood paralytic polio. And these are some steps we can take. You know,

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the difficulty swallowing was very alarming. And to have a speech therapist do a swallow test.

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And to say those muscles are deconditioned, and that's why you're aspirating food into your lungs,

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here's what you can do to bring some relief. So yes, the fact that there was something very

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real going on in my body that could be addressed, and something completely separate from the polio,

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which is something that the physiatrist discovered at the post-polio clinic was, I had a disc pressing

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on a nerve in my neck. And he sent me to a cervical spine doctor, who to this day, I call my

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my master magician. And I had trigger injections. That was causing the tingling sensation into my

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face down my arm and also the severe radiating pain. And so it was like, oh my god, there are

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like things we can do to help the body to heal. So yes, it was a tremendous relief.

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It's probably an interesting kind of like proposition, though, because you're you finally get

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that diagnosis, which is very reassuring. But then you're then connected to all these professionals

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who kind of put limitations on you because of that diagnosis. So it's kind of, I guess, I don't know

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it's a positive, but then there's also to a degree a negative component to it. And there might be some

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people who when they might take all that medical advice verbatim and not explore any alternative

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methods. So I wonder kind of what the best approach towards addressing that is. But

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no, that's that's a very important point, Brendan, because initially I immersed myself

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in the Western medicine model. And even after I blew out my knee, I went back for a minute

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to the Western medicine model. And then I was blessed to find a chiropractor. So I think,

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and I went back in 2014, because I needed to know, okay, what's going on in my knee joint,

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what's going on in my leg. And one of the things that the physiatrist said to me was,

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well, the MRI shows that your gastro-muscle is gone, it atrophied from the polio,

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there's nothing we can do about that. Well, fast forward to meeting this incredible chiropractor

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who said, well, you can do gastro-strengthening exercises, we're going to use KT tape, and

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you can actually grow a new muscle. We don't have to stay stuck with the notion that it's atrophied

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and it's gone. And you see this a lot in your work, I'm sure, in terms of especially stroke

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survivors, right? Yeah, it's been some tough conversations where I don't want to put limits

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on what their recovery is going to look like. And it's beyond my scope of practice to predict

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those things anyway. I'm just a personal trainer, strength and conditioning coach. But like,

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when I sometimes hear one of them say, like, oh, when am I going to be able to do XYZ? Like,

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is this ever going to be back to quote unquote normal? Or they commiserate that they're frustrated,

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they have to do all this exercise and rehab. And I just try to tell them, like, listen, everyone

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has to exercise to stay healthy, whether you're doing rehab exercises, or you're immersed within

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a traditional group class, like, it's just part of being the healthiest version of yourself. And

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we try to just look at how functions affected. So we identify a specific goal they want to work on.

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So for you, it was running the marathon for one of my clients, that's he wants to ride a bike

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across the country. So it's like, what are the skill sets and what are the physical qualities

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we need to be able to bike across the country. And it's improving his cardiovascular health,

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that's being able to stabilize on a bike for long enough. It's not necessarily that he might have

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some hemiplegia and one of his hands are affected by his stroke, like, that's obviously relevant,

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but it doesn't necessarily have to prevent him from doing and achieving that goal. So it's like,

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you were referring to the Western medical model. And we compare that to like the social model

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disability where someone's not necessarily disabled by a specific impairment, but more so by

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an environment that doesn't account for their differences or like a lack of support in the

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right ways. So that's just like a perspective we try to communicate with our coaches is you need

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to understand the diagnosis because that's going to influence how you train someone. But it's not

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necessarily the impairments that are present in the person that's preventing them from like

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accessing our gym. It's how our gym is structured that needs to accommodate them. So that's just

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a perspective that I think kind of needs to be carried forth to make like all businesses more

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inclusive and accessible, I guess. Absolutely. Oh my gosh, that's critical. And so often too,

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you know, the first race, five mile race that I ran, well, the very first race I ran was the

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neighborhood race, the Corom Pub. And that was, you know, so friendly. And everybody was celebrating

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the fact that, oh, this is my first road race. And little did I know, I thought, you know,

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all races are like that. Well, then I got to the marathon sports five miler. And it was an evening

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race. And it was very hot. And we had trouble finding the race because it had moved, etc. So

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everybody just, it was a very fast field, Brendan. And they all took off. And one woman said, oh,

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I'm not going to be last. And I was beside myself. And it was an evening race. And I was still in

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the very early phases of, you know, getting, learning how to run, basically. And I was crying,

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and I was sweating. And I didn't know like where the tears ended in the sweat began. My husband

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stayed with me. My daughter went ahead because she wanted to run her race, which was great. And also,

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there was one woman who made some snarky comments. So she took off and she got her, her Irish up,

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if you will, because for mom, anyway, but my point here is that, you know, the, the, my mindset

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during that time was what am I doing? I don't belong here. And fortunately, when I crossed the

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finish line, marathon sports knew my story because they fitted me with my first pair of running shoes.

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And they celebrated me like I broke the tape. And the, the, they blew the air horn. And fortunately,

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there was staff still out on the course. But had they not known my story, had they not kept the

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water stops open, had the volunteers left, it would have been a total disaster. And I don't know if I

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would have had the courage to go on and train and run Boston. So you're absolutely right. It's so

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important. I mean, endurance sports have the capacity to be probably the most inclusive and

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accessible sport there is. Like there's really nothing that would prevent someone from a wheelchair

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competing alongside you, competing alongside me. Like I think it's just when you're designing a race

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or when you're trying to put together an event like this, just understanding all the different

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situations. And like you said, making sure that water stop stays open, making sure there's people

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to celebrate the finish, like giving everyone the same treatment and the same opportunity to

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experience like everything that running provides. You also said something very important earlier,

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Brendan, about everybody has to exercise and train. And one of the things that I felt early on was

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that I knew I was going to be in pain with post-polio syndrome. There is a lot of pain that's involved.

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And I decided early on that if I were going to experience pain, I'm going to experience it on

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the sign of healing and health because there's pain of atrophy. And a lot of what I was experiencing

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early on was the pain of atrophy. And so it's so important for people to make choices for

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themselves and everybody's different. But I know for me, you know, I knew there was going to be pain.

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So why not do it?

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And not to diminish that experience in any way, but like I think you'd be hard pressed to find

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anyone training for a marathon that doesn't experience some of the highs and lows of pains.

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Yeah. So that's like, and I think Jesse and in the first podcast we recorded when she was like

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talking about the immediate time after her accident and she said, oh, there's good days and bad days,

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but people without a spinal cord injury have good days and bad days too. So it's like, how are you

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going to respond to those bad days? So those are like, those are the messages that I think we really want

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to perpetuate and communicate to people. Absolutely. Absolutely.

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That gets away the victim mindset. Yeah. And there's, you know what, there's no, like, there's no separation

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between the life that I live having experienced polio and then having been diagnosed with post-polio syndrome

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and somebody who hasn't, you know, there are struggles, there are highs, there are lows, um, arms slower.

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Absolutely. But you made such a good point. And I think so often, you know, we tend to separate and segregate

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and categorize. But in truth, you know, we're all on this journey together and however it comes up for each individual person,

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but, um, you know, certainly don't look at me and say, um, well, you know, you've had this disability or whatever.

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And you asked a very interesting question to Jesse, which is how does she feel about somebody saying you inspire?

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I was going to ask you the same question. Yeah. Well, that ties into this because I think a lot of times,

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oh my God, you live through all of that. You're such an inspiration. And, you know, Jesse said it so well.

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And I felt the same way. I was like, yes, you know, that's, that's how I feel. Um, I want to be an inspiration.

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And yes, I inspire myself. I inspire my daughter. My daughter inspires me with her journey.

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Um, and we all inspire each other. Um, my husband's now 71 and he's going to be running the tree. He ran the trilogy of half marathons with my daughter

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in a year for fundraiser. But my point is, is that, you know, we can all inspire each other.

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I love being an inspirational, being inspirational to other people. I just think it's so important that we have heroes and heroes.

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And the people say, oh my God, she lived through that. And Dave said it in Dave McGilvery in his review of my book,

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then she lived through all of that. What's stopping me from being the best that I can be.

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So, um, yeah, it's a joy to have inspiration.

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Did you have any representation? Like, was there anyone else with post polio syndrome that you kind of like looked up to or that you saw accomplishing great things?

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Well, I just got goosebumps. Um, not post polio syndrome per se, but Wilma Rudolph is my shero. Do you know who she is?

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Uh, no.

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So she had polio and the doctor said that she would never walk. And her, I don't know how many siblings she had, Brendan,

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but they all came and they massaged her legs and her mother prayed and said, you will walk again.

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And, um, not only did she walk again, she started playing basketball and then she went on to track and field and she won five Olympic gold medals.

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I don't know how I haven't heard that name then.

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Oh, you should Google her. My personal trainer, I had a really tough run, a training run for Boston.

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And I said, ah, Janine, I don't know how I'm going to do this. And she said, you're going home and you're Googling Wilma Rudolph.

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And I did. I still get goosebumps thinking about that. So, yeah.

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But you know, it's interesting that I don't know any other post polio people who are out there.

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I do have friends with MS who are doing epic things, Parkinson's disease.

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But I don't, in terms of representation for post polio, but for polio, Wilma Rudolph, definitely.

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Do they present in a similar way, post polio and MS in Parkinson's?

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Yes. Yeah. Yeah. And especially with the message of progression.

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Yeah. Yeah. Yeah. My dad was diagnosed with MS when I was in kindergarten.

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But he has had a really good and fruitful 21, 22 years since that diagnosis.

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But I know that's not always the case for every case of MS.

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We have a couple of clients with MS and their disease has progressed in various ways.

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And I guess similar to other diagnoses that might depend on the location of the lesions and the size of the lesions.

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Do you know what the diagnostic process is for polio, post polio syndrome?

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Well, it's a diagnosis of exclusion.

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So there's actually no, like with MS, they have the MRI and they look for the plaque with, I'm not sure how they diagnose Parkinson's.

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But so that's MS Parkinson's.

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And for post polio, it's a diagnosis of exclusion.

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So they did extensive lab work, I mean, eight tubes of blood to rule out any other possible causes.

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The only thing that came back abnormal was the muscle function test in the blood work.

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And then they also use something called an EMG, which they really need to find a better way because that's,

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have any of your clients had EMGs?

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I'm sure they have in some capacity.

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It's not something we've talked about closely.

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Well, it's really awful because what they do is they test your nerve to muscle function and they zap you.

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And then they turn up the zaps and, oh, it was awful.

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They did it in my upper body and so they discovered that there was no gross effects of, late effects of polio in my upper body.

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But I wouldn't let them do my legs.

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And on clinical exam, it was apparent that there was a lot of weakness in my lower extremities, left, greater than right.

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So, but those are kind of the diagnostic tests.

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And then it's based on clinical exam as well as presentation of symptoms.

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Is there any medicine intervention for post polio?

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Interesting question.

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One of the things that they wanted me to take was called artane for head tremors.

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And interestingly enough, my tremors have gotten much, much better because of the meditation.

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I think because of the exercise, because of, you know, just really being convinced that, you know, I can transform these late effects of polio.

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So they, I started the artane and it made me really sick to my stomach.

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00:40:52,420 --> 00:40:55,420
So then they said, well, we can do Botox injections.

378
00:40:55,420 --> 00:40:59,420
And I said, no, thank you. I'm cool. I can live with this.

379
00:40:59,420 --> 00:41:05,420
So there are some medicines that help with fatigue that they also use in MS and whatnot.

380
00:41:05,420 --> 00:41:09,420
But, you know, I'll take a nap.

381
00:41:09,420 --> 00:41:20,420
Yeah. So, I mean, but yeah, our, some of our clients with CP use Botox effectively as well as well as one of my clients with an SCI.

382
00:41:20,420 --> 00:41:26,420
But it's really different for everyone and everyone responds differently to the medication.

383
00:41:26,420 --> 00:41:34,420
So my dad was on a, I guess they're all kind of experimental interventions because there's no necessarily like a cure for MS.

384
00:41:34,420 --> 00:41:41,420
But when I interviewed another adaptive athlete who has MS, she said that she never tried anything.

385
00:41:41,420 --> 00:41:47,420
And then one of my clients tried the same medicine that my dad takes and it didn't work for her.

386
00:41:47,420 --> 00:41:52,420
So I guess it's a series of trial and error, I suppose.

387
00:41:52,420 --> 00:42:00,420
It is. It really is. And my friend with MS who does Epic stuff and she's actually going to be running the Hawaii Marathon.

388
00:42:00,420 --> 00:42:09,420
And she's run Boston for charity and she does the reach to the beach and just does all this incredible stuff.

389
00:42:09,420 --> 00:42:14,420
She actually had some IV infusions that were extremely helpful to her.

390
00:42:14,420 --> 00:42:21,420
And then she saw a chiropractor who specializes in MS and that also really helped her as well.

391
00:42:21,420 --> 00:42:32,420
And I think, you know, whatever the best of East and West and or whether we call it East or West or Holistic or whatever.

392
00:42:32,420 --> 00:42:36,420
But yeah, I think it's putting together the best of what's going to work.

393
00:42:36,420 --> 00:42:45,420
And for me, I just found that side effects of medicine were more harmful than any potential benefits for me.

394
00:42:45,420 --> 00:42:49,420
I know for some people, as you mentioned, like the Botox was great.

395
00:42:49,420 --> 00:42:56,420
So I think whatever people can find on their healing path, use any and all of it.

396
00:42:56,420 --> 00:43:00,420
Did your diagnosis affect your career path?

397
00:43:00,420 --> 00:43:05,420
I guess how do you think your childhood influenced your decision to go into social work?

398
00:43:05,420 --> 00:43:08,420
Oh, that was absolutely.

399
00:43:08,420 --> 00:43:13,420
You know, I was healing myself while I was healing others.

400
00:43:13,420 --> 00:43:22,420
And I was, I majored in public relations and then I worked at the BU Counseling Center and doing their public relations.

401
00:43:22,420 --> 00:43:27,420
And the director said, you have a real gift with the students who come in here.

402
00:43:27,420 --> 00:43:30,420
And he said, I really think you should go into counseling.

403
00:43:30,420 --> 00:43:32,420
And I said, oh, you mean I need counseling?

404
00:43:32,420 --> 00:43:34,420
He said, no.

405
00:43:34,420 --> 00:43:36,420
He said, you should become a counselor.

406
00:43:36,420 --> 00:43:39,420
So the quickest route was social work.

407
00:43:39,420 --> 00:43:45,420
And I worked initially with adolescents and that wasn't a good fit.

408
00:43:45,420 --> 00:43:50,420
And then I did some inpatient psychiatric work and then ended up at the VA.

409
00:43:50,420 --> 00:44:02,420
And in terms of my career path, I had to end it with the diagnosis because I needed to take care of myself.

410
00:44:02,420 --> 00:44:09,420
And they also said the OT, the occupational therapist and the physical therapist,

411
00:44:09,420 --> 00:44:13,420
even my angel of a physical therapist who said, you're not going to end in a wheelchair.

412
00:44:13,420 --> 00:44:20,420
But she put me on a biofeedback machine and said, look at what the stress is doing to you physically.

413
00:44:20,420 --> 00:44:23,420
And then you've got the emotional stress.

414
00:44:23,420 --> 00:44:29,420
And, you know, I couldn't push my veterans around in a wheelchair any longer because I needed one.

415
00:44:29,420 --> 00:44:33,420
And so, you know, I knew it was time.

416
00:44:33,420 --> 00:44:40,420
And I always said, Brendan, that if ever there were the day that I could not give my veterans 100% and their families,

417
00:44:40,420 --> 00:44:42,420
that I would leave.

418
00:44:42,420 --> 00:44:48,420
So I was three years shy of retirement, but I took out my whole retirement account,

419
00:44:48,420 --> 00:44:52,420
which actually was a godsend because then the market crashed.

420
00:44:52,420 --> 00:44:54,420
So I had my retirement account.

421
00:44:54,420 --> 00:44:58,420
And I took that leap of faith and said, I've got to heal my life.

422
00:44:58,420 --> 00:45:00,420
I've got to take care of me.

423
00:45:00,420 --> 00:45:05,420
But I do cherish the memories from when I was able to serve those who served.

424
00:45:05,420 --> 00:45:07,420
Yeah, absolutely.

425
00:45:07,420 --> 00:45:14,420
I, we hope that the audience for the podcast is, I mean, anyone really,

426
00:45:14,420 --> 00:45:17,420
but a lot of the work that we do is more within the fitness space.

427
00:45:17,420 --> 00:45:21,420
And you mentioned in the book having an angelic personal trainer.

428
00:45:21,420 --> 00:45:33,420
And I was curious kind of what characteristics made her so effective for you and like how that can be applied by other people in the health and fitness industry.

429
00:45:33,420 --> 00:45:35,420
Oh, that's a great question, Brendan.

430
00:45:35,420 --> 00:45:46,420
Well, the biggest thing was I met her through a friend and we were actually talking about her in-home personal training business.

431
00:45:46,420 --> 00:45:52,420
And this business networking international that she belonged to.

432
00:45:52,420 --> 00:45:55,420
And so we were talking about how I could promote.

433
00:45:55,420 --> 00:45:58,420
I had a little greeting card business and I left the VA.

434
00:45:58,420 --> 00:46:04,420
We were talking about my business, but in the back of my mind, I thought, I wonder if she can help me.

435
00:46:04,420 --> 00:46:11,420
So she said, because I was so bored with my repetitive exercises from Spaulding.

436
00:46:11,420 --> 00:46:19,420
And so after we got through talking about this business networking international, I said, do you think you could help me?

437
00:46:19,420 --> 00:46:30,420
And her, her response was from Henry Ford, whether you think you can't or you think you can, you're right.

438
00:46:30,420 --> 00:46:40,420
So right off the bat, I was like, okay, you know, that the fact that she believed that people can get stronger,

439
00:46:40,420 --> 00:46:42,420
that people can go farther.

440
00:46:42,420 --> 00:46:51,420
And the fact that she said to me that I was too young to not be able to get off a couch or get off of the toilet seat without assistance,

441
00:46:51,420 --> 00:46:54,420
or that I needed a tub chair to take a shower.

442
00:46:54,420 --> 00:47:04,420
And she, or to use my leg brace and a cane to be able to walk and not even to be able to enjoy being in my physical body.

443
00:47:04,420 --> 00:47:09,420
So she held that faith for me, which was fantastic.

444
00:47:09,420 --> 00:47:13,420
Total non-judgment. When she did the initial assessment, I couldn't pass it.

445
00:47:13,420 --> 00:47:20,420
And, you know, she did the BMI, she did everything. No judgment whatsoever.

446
00:47:20,420 --> 00:47:24,420
She said, okay, this is where you are today. We've got our baseline.

447
00:47:24,420 --> 00:47:36,420
And then six months later, and she worked with me and she, just the faith that I didn't have to be that decondition,

448
00:47:36,420 --> 00:47:41,420
was a very, very powerful healing force for me.

449
00:47:41,420 --> 00:47:46,420
And she also gave me things to do in between sessions.

450
00:47:46,420 --> 00:47:53,420
And after six months, we did the initial assessment again and I passed it.

451
00:47:53,420 --> 00:47:55,420
And that was really exciting.

452
00:47:55,420 --> 00:47:58,420
And she asked me what my next goals were.

453
00:47:58,420 --> 00:48:04,420
Now, probably most, this is very, this is extremely unique.

454
00:48:04,420 --> 00:48:11,420
I'm sure most personal trainers might not have had the same reaction that she did when she asked me my next goals.

455
00:48:11,420 --> 00:48:15,420
And I said, maybe take a dance class because I took the L.A. as a child.

456
00:48:15,420 --> 00:48:17,420
I want to come out of my leg brace.

457
00:48:17,420 --> 00:48:20,420
I just want to take a walk outside and feel free in my body.

458
00:48:20,420 --> 00:48:25,420
And she was writing everything down and I said, I need different exercises.

459
00:48:25,420 --> 00:48:28,420
I get bored. I think most people do.

460
00:48:28,420 --> 00:48:34,420
And so she's getting ready to leave and I said, wait, I have one more goal.

461
00:48:34,420 --> 00:48:37,420
And I just said it.

462
00:48:37,420 --> 00:48:39,420
I said, I want to run the Boston Marathon.

463
00:48:39,420 --> 00:48:41,420
It didn't go through my head.

464
00:48:41,420 --> 00:48:44,420
It fell out of my mouth from my soul.

465
00:48:44,420 --> 00:48:48,420
And it was just something that I felt called to do.

466
00:48:48,420 --> 00:48:53,420
She could have said, Mary, you've never run a day in your life.

467
00:48:53,420 --> 00:48:55,420
You're in your leg brace.

468
00:48:55,420 --> 00:48:57,420
Why don't we start out with a 5K?

469
00:48:57,420 --> 00:49:02,420
And she said, you're going to need a pair of running shoes.

470
00:49:02,420 --> 00:49:08,420
It's like holding people to high expectations and also catering things to their specific goals

471
00:49:08,420 --> 00:49:12,420
and not just your biases, I guess, as a trainer.

472
00:49:12,420 --> 00:49:13,420
Yeah.

473
00:49:13,420 --> 00:49:14,420
Yeah.

474
00:49:14,420 --> 00:49:16,420
So, and Brendan, that's crucial.

475
00:49:16,420 --> 00:49:17,420
Not having a bias.

476
00:49:17,420 --> 00:49:19,420
Don't judge.

477
00:49:19,420 --> 00:49:26,420
She didn't say, well, you don't have a runner's body or you can't run or any of that.

478
00:49:26,420 --> 00:49:28,420
She just had total faith.

479
00:49:28,420 --> 00:49:35,420
And she had coached another person who did not have any physical challenges,

480
00:49:35,420 --> 00:49:37,420
but she coached her.

481
00:49:37,420 --> 00:49:39,420
She'd never run a day in her life.

482
00:49:39,420 --> 00:49:42,420
And this woman went on to run the Boston Marathon.

483
00:49:42,420 --> 00:49:52,420
And so the fact that she did have these wonderful expectations of mine and was able to embrace that.

484
00:49:52,420 --> 00:49:57,420
And then she also trained my husband and my daughter because they said, you're not going to do this alone.

485
00:49:57,420 --> 00:50:00,420
They also didn't think I was really going to do it, Brendan.

486
00:50:00,420 --> 00:50:04,420
It was sort of a, oh yeah, well, wink, wink, we'll go along with you.

487
00:50:04,420 --> 00:50:13,420
So those are, you know, those are very important qualities and also just her caring, her compassion.

488
00:50:13,420 --> 00:50:17,420
And she had a great sense of humor.

489
00:50:17,420 --> 00:50:24,420
And the first time she took me on hill training, we have a huge hill in our neighborhood.

490
00:50:24,420 --> 00:50:29,420
And I said, wait, I think it's too soon for hill training.

491
00:50:29,420 --> 00:50:32,420
She said, you're going to have a lot of hills to run.

492
00:50:32,420 --> 00:50:35,420
And she said, you know, let's just do it.

493
00:50:35,420 --> 00:50:40,420
And at first, you know, there were times when I wondered was she pushing me too hard too fast.

494
00:50:40,420 --> 00:50:42,420
But then I realized I was training for Boston.

495
00:50:42,420 --> 00:50:48,420
So she engendered a sense of trust in her judgment.

496
00:50:48,420 --> 00:50:49,420
Absolutely.

497
00:50:49,420 --> 00:50:56,420
And I wonder what has to be changed to raise people's expectations of those with disabilities.

498
00:50:56,420 --> 00:51:02,420
That's where I think like that question I asked Jesse, like, do you like being inspirational?

499
00:51:02,420 --> 00:51:11,420
I guess maybe the root cause of that question in my head is that I think sometimes people with disabilities doing kind of rudimentary tasks gets

500
00:51:11,420 --> 00:51:19,420
praised and goes viral and it inadvertently makes people expect less of someone with a disability.

501
00:51:19,420 --> 00:51:23,420
Because people are getting praised for doing something pretty basic.

502
00:51:23,420 --> 00:51:25,420
Oh, that must just be the baseline.

503
00:51:25,420 --> 00:51:34,420
So that's where it's like walking the tight line of like an inspiration narrative versus someone doing something actually inspirational like you.

504
00:51:34,420 --> 00:51:39,420
It's like, how can we recondition the general public to expect more?

505
00:51:39,420 --> 00:51:47,420
Because that's where I think one thing we do pretty well is we treat all of our clients whether they have a disability or not in the same way.

506
00:51:47,420 --> 00:51:49,420
We hold them to high expectations.

507
00:51:49,420 --> 00:51:52,420
We cater programs to their specific goals.

508
00:51:52,420 --> 00:51:58,420
But I don't know if that's commonplace, but I wonder what has to be done for it to become more common.

509
00:51:58,420 --> 00:52:08,420
Well, one of the things I, as I mentioned to you when I gave feedback about the book that's going to come out is that when you hold somebody to low expectations,

510
00:52:08,420 --> 00:52:11,420
first of all, it's a self-fulfilling prophecy.

511
00:52:11,420 --> 00:52:19,420
But the other thing is I was in a class at Spaulding and I don't even know how I found my way there.

512
00:52:19,420 --> 00:52:28,420
But it was for people who had challenges that were far greater than mine.

513
00:52:28,420 --> 00:52:36,420
But it was also the way, like it wasn't, okay, so, oh Mary, you look like you could do this.

514
00:52:36,420 --> 00:52:51,420
You know, and making it an inclusive experience rather than addressing the needs of the people with the least ability at that moment.

515
00:52:51,420 --> 00:52:53,420
Because it's always changing and growing.

516
00:52:53,420 --> 00:53:04,420
But I think it is a mindset and I think the biggest part of that mindset is to see capability, is to see possibility.

517
00:53:04,420 --> 00:53:07,420
And what's the worst that happens?

518
00:53:07,420 --> 00:53:09,420
So somebody doesn't achieve their goal?

519
00:53:09,420 --> 00:53:17,420
Well, they, what is it, shoot for the stars, you know, aim for the moon, you'll get a star or whatever.

520
00:53:17,420 --> 00:53:19,420
But that's what it is.

521
00:53:19,420 --> 00:53:24,420
Like, you know, what's the, what's the harm and failure too?

522
00:53:24,420 --> 00:53:26,420
And how do we even register failure?

523
00:53:26,420 --> 00:53:36,420
But I think, you know what it is, Brendan, I think the core thing that needs to change in Western medicine in the way things are approached is fear.

524
00:53:36,420 --> 00:53:46,420
I think, and that's where Jesse really addressed that, you know, when she talked about when she went back to being an orthodontist assistant.

525
00:53:46,420 --> 00:53:55,420
And, you know, she talked about how, yeah, sometimes something would happen with a patient and I go in, I change my clothes, so what?

526
00:53:55,420 --> 00:53:57,420
But she's out there and she's doing it.

527
00:53:57,420 --> 00:54:04,420
And I think that fear factor, you know, I can't begin to tell you the messages of fear I receive.

528
00:54:04,420 --> 00:54:11,420
You need a cane with an ice grip because if you fall, you're going to fracture your hip and then it's all going to be over.

529
00:54:11,420 --> 00:54:18,420
And I'm like, well, guess what guys, I had several falls while running.

530
00:54:18,420 --> 00:54:20,420
None of it on the ice, by the way.

531
00:54:20,420 --> 00:54:22,420
But you know, uneven pavement or whatever.

532
00:54:22,420 --> 00:54:28,420
I had one fall while training for the Bermuda half marathon.

533
00:54:28,420 --> 00:54:31,420
It was in summer and there was a tree root.

534
00:54:31,420 --> 00:54:39,420
And I landed like I did a face plan, my knees, my hips actually hit the pavement.

535
00:54:39,420 --> 00:54:49,420
Now I was told that I had osteoporosis and that, you know, basically there was nothing they could do because bone density doesn't come back.

536
00:54:49,420 --> 00:54:52,420
Well, ladies and gentlemen, it does.

537
00:54:52,420 --> 00:55:00,420
But anyway, and again, we're not giving medical advice and I know that's very important, Brendan, a big disclaimer.

538
00:55:00,420 --> 00:55:10,420
This is my story, but I think we need to take the fear factor out of things because truthfully, what's the worst that can happen?

539
00:55:10,420 --> 00:55:11,420
And so what?

540
00:55:11,420 --> 00:55:14,420
If I went out, I fractured the hip, it'll heal.

541
00:55:14,420 --> 00:55:18,420
The body has tremendous capacity to heal and to grow.

542
00:55:18,420 --> 00:55:20,420
Yeah, and it's like normalizing disability.

543
00:55:20,420 --> 00:55:33,420
The more people see your story, the more people that listen to Jesse's story, the more they'll just begin to recognize disability amongst the general public and stuff.

544
00:55:33,420 --> 00:55:40,420
And they just see it as another characteristic of an individual instead of something that should segregate them.

545
00:55:40,420 --> 00:55:41,420
Yes.

546
00:55:41,420 --> 00:55:42,420
Oh, that's perfect.

547
00:55:42,420 --> 00:55:43,420
Yes, segregation.

548
00:55:43,420 --> 00:55:45,420
That was the word I was looking for.

549
00:55:45,420 --> 00:55:51,420
I think I would love to wrap up with this quote that you have in the book.

550
00:55:51,420 --> 00:55:54,420
You say, I can no longer be a slave to my past.

551
00:55:54,420 --> 00:55:55,420
I'm running my own race.

552
00:55:55,420 --> 00:56:00,420
Each training run is an opportunity to learn more about myself, mind, body, and spirit.

553
00:56:00,420 --> 00:56:08,420
Every race where I finish last reminds me to celebrate who I am, to celebrate my courage, faith, determination, and to let go of arbitrary measures of success.

554
00:56:08,420 --> 00:56:16,420
I think that perfectly encompasses a lot of the things that we're after.

555
00:56:16,420 --> 00:56:21,420
We want to give everyone the opportunity to run their race or participate in an activity that they love, that they're passionate about.

556
00:56:21,420 --> 00:56:33,420
And hopefully these conversations can begin to kind of change the narrative a little bit, demonstrate to people what individuals with disabilities are capable of doing when they have the race support system in place.

557
00:56:33,420 --> 00:56:42,420
And maybe it will encourage someone to be that support system so someone else in your situation can benefit from their guidance and their help.

558
00:56:42,420 --> 00:56:47,420
Mary, we really appreciate you coming on today and sharing your story.

559
00:56:47,420 --> 00:56:56,420
We'll definitely link to your poetry and your books and the show notes, as well as your personal domain, your website as well.

560
00:56:56,420 --> 00:57:02,420
We hope wherever your running journey takes you next, you have an incredible experience and you meet fantastic people like you.

561
00:57:02,420 --> 00:57:08,420
Discuss in the book, that's been my favorite part of being involved with the running community.

562
00:57:08,420 --> 00:57:12,420
It's just the people that I've met over the last seven or eight years.

563
00:57:12,420 --> 00:57:15,420
It's really a sport unlike any other, I think.

564
00:57:15,420 --> 00:57:19,420
Absolutely. Well, actually we're heading to Bermuda in January.

565
00:57:19,420 --> 00:57:30,420
I took a hiatus after running three halves in Bermuda and had a setback in 21 and 22, but the comeback is always greater than the setback.

566
00:57:30,420 --> 00:57:34,420
So my next running journey is going to be in Bermuda in January.

567
00:57:34,420 --> 00:57:36,420
So thank you, Brendan.

568
00:57:36,420 --> 00:58:05,420
I'll be following along.