What If You Could Choose Joy, Even When Life Isn’t Fair?

This week on Epic Stories, Jean Tillery shares a powerful and deeply personal episode: a re-airing of her very first podcast interview with her friend Bobby Quinn, who faced ALS with unyielding courage, humor, and love. As Jean Tillery reflects on coming back to their conversation, she’s reminded of the lasting impact that ordinary people’s stories can have on our understanding of joy, resilience, and purpose.

Whether you’re new or a longtime listener, you’ll hear Bobby Quinn speak openly about his journey with ALS, the realities of living with the disease, the importance of community support, and his unwavering choice to keep living and loving with joy—no matter his circumstances.

Key Takeaways

• The Power of Perspective: “Bobby Quinn” famously said, “My life doesn’t suck. My circumstances do.” No matter what life throws at us, our outlook matters.
• Community Matters: From fundraisers to friends feeding him lunch, Bobby Quinn’s story is a testament to the importance of relationships and letting others show up for you.
• Facing Hard Truths: Candid discussion of ALS symptoms, daily challenges, and decisions around care—reminding us not to take anything for granted.
• Lasting Impact: Even after his passing, Bobby Quinn’s humor, kindness, and refusal to lose his joy continue to inspire everyone who hears his story.
• A Call to Action: Jean Tillery is donating $1 for every listener who comments “listened” on her Facebook episode post, in support of ALS fundraising.

After listening, do something intentional to support or encourage another person—reach out, check in, donate, or share this story. Then, head to Jean Tillery’s Facebook page and comment “listened” on the episode post. Every comment means another dollar donated to fight ALS, honoring the spirit of Bobby Quinn and reminding us all: keep showing up, keep finding joy, and keep living EPIC.

For more inspiration and resources, visit epiclivingwithjean.com and download your free guide to living epic.

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This week's episode is a little different. I'm actually resharing the very first interview that I ever recorded for this podcast. Listening to it again this week hit me even harder than it did the first time. When I was a little girl, I remember seeing a scene, scene in a movie where someone was trapped in quicksand. At that age, I had never heard of quicksand and didn't even know what it was. But I do remember the fear. That feeling of being stuck, unable to move, unable to make anyone understand what was happening. That night, I had a dream that my arms and legs wouldn't work and I couldn't get anyone to help me.

And I do remember the panic that I felt this week. As I listened back to this interview, I realized that there are people in this world for whom that fear is not a dream. It's real. My guest for that first interview was my friend, Bobby Quinn. Bobby, at the time was battling ALS and also known as Lou Gehrigst disease. It's a progressive neurological disease that slowly steals a person's ability to move, speak, eat, and then eventually even breathe. Bobby was one of the strongest, funniest, most positive people that I had ever met. And even while facing an impossible diagnosis, he kept choosing joy, community, relationships, music, and purpose.

This month, my friend and incredible singer songwriter Courtney Patton is helping to raise money and awareness for ALS in honor of a friend of hers who is currently battling the disease. And it reminded me that some stories deserve to be heard again, especially stories like Bobby's. The interview was originally recorded in 2019. Bobby passed away on April 27, 2021. But going back and listening to his words now, his perspective, his humor, and his courage and his joy still feel incredibly alive. So I decided to do something special. Special this week for every person who listens to this episode and then goes to my personal Facebook page and comments listened on the post where I announced this episode being launched. I will donate $1 to Courtney for her ALS fundraiser because I really believe that stories matter, and so do people.

So here is my conversation with Bobby Quinn.

I can't believe you wanted to do this with me.

Why?

No, it's just. I'm just a regular person trying to get through it.

And that's exactly the way. There's a lot of, you know, stars out there who try to pinch something in your hot.

Yeah.

And what makes them look around are

us ordinary people just doing our ordinary lives every day.

I understand. I mean, because I don't know what you're gonna ask me on here. But the one thing that since I've been diagnosed, I feel like my purpose has changed. And when I first got diagnosed, Brendan McClure from Main Street Homes reached out to me and they changed their customer Appreciation golf tournament and made a fundraiser for Harper's Hopes, which is ALS research at BCU in my name. And the first tournament, they won the race, $50,000. They wrote in Harper's Hope a check for $82,000. And then last year, they did the kins. They raised IRA check for $83,000 and then gave Michelle a check for $8,000 to pay for my lift in my garage.

So. And then the ALS walk in October on Brown's island is the largest fundraiser that the association does. And Team Gwilt has been the largest team and raised the most funds the last two years in a row. And I'm will kick ass this year. You know, I've always been a competitor in sports. This is my competition now.

And puzzle for which does this competition have over? A football game. And you're touching hypes. And three, recognition. I'm already out there watching for you.

It's not so much that because, you know, everybody in life places a stamp on this earth is what you have included in that stamp that brings that value. And having said that, I think that and by no means do I take credit for any of this, because I won't. Because people have the choice to help or not help. But having been affected by this and having wonderful people in my life, you know, $165,000 has gone to Harper's Hope. Over $50,000 has already gone to the association. And Kevin Griffith, my boss at the company, we're having lunch one day. He said, bobby, I hate like hell that you got this. He's about als.

Could not have gotten the best spokesperson. I said, well, if it's good to be found in this, if I find that $1 that goes towards finding that cure, then my life has been worth it. So. So the fact that I am now at the point where I do need to raise funds for myself because it's so expensive, doesn't mean I won't still stop trying to raise money for the cause itself.

Yeah.

Because I can't.

And because you're bringing acknowledgement to the reality of what happens. It's not just a vague word out there.

This is for real. This is for real. Basically, I was the sales manager of a heating and air conditioning company, Griffith Heating Cooling. And I've been in that business for 21 years. And I went to work for Kevin in 2008 and I've always believed in the product. So and having said that, Griffith was a great company while I went to work for them and several years into it we had gotten into second place in the state of Virginia in sales of that product. And that night we were at the dealer meeting, I went to the GM and I said, this is the last year I will come here and get a second place trophy. So including 2018, which is my last day working, Gravity Heat and Cooling has been the number one American Standard dealer in the state of Virginia.

And Tony got up and said, Bobby Quinn told me back then that he wasn't going to be second anymore. And he meant.

So that is what started your influence with people?

Well, pretty much because I started out driving tractor trailers for 11. I used to go to all the businesses around Richmond. I met the people that were there. I was in Manage Town Automotive stores for about four years after that. So I met all the car dealerships on Midlothian and Broad street, got in the H VAC business and they had no idea how many people I knew. So for the last 18 years I've had the Pearson dealerships, the Haley dealerships, the Priority dealerships, the CMA Group, all them for people I met when I did what I did before. But guess what, they all have heating in there too. So relationships are crucial.

Burning bridges don't help anybody because you never know where somebody's going to be from one day to the next. And just being willing to offer yourself when people need you instead of feeling like you're being put out by doing so, you would have no idea how that comes back tenfold if something happened to you that you would have no idea what happens. You have no idea. I've got the golf tournament coming up in May and I've got a lot of people business wise that are playing and sponsoring. And if I had gone around with a negative attitude towards people, I wouldn't be able to have this years ago.

The way you treated people and the attitude that you had when dealing with them is pain back now years later.

Well, I by no means think I'm any better than anybody else, but I do feel like that people felt like my care was genuine and is not because I did anything. I mean my gosh, the best day of my life is when I got rid of my trailer because everybody knew that Bobby's got a trailer, Bobby's got the ability to move things and Bobby won't say no. I did. And the funny thing is Whenever I needed something done, I didn't call anybody. I just got Steven and Brandon's butt over here. But it's all good because I enjoy the fellowship, the camaraderie of what comes with the stuff you do, even if it's work.

That's true. So tell me about what? Well, why did you notice?

June of 2016, I was helping Kevin unload a refrigerator off the back of a truck and when I did, I was on the right side and I'm left handed. When I lowered it off tailgate, I noticed I lost the strength in my left hand. So I literally caught it with my knee and let it slide down easily so I wouldn't mess up his fridge. Right? I told captain, I said something, I don't know if I pinched the nerve in my forearm or what. So I just thought nothing of it. And as a couple months went by, this again was in June. I had some twitching on my left hand and I had a hard time picking up a glass. And so we went to a neurologist and he had the compassion of a billow out there and he looked at me and said, Bobby, you might have als.

He said, but I'm not going to say that just yet. So we went to orthopedics and he said that I might have some nerves in my neck from all those years of football. So in 12-12-16, they replaced four discs in my neck and replaced them with cadavers. And it looked like a bicycle chain back then. Now within the few weeks of the surgery, my arm started twitching again, so. And all they really did was rule that out. And then shortly in the 17 arm started switching. So we went back to the neurologist, won't name him.

And he said, you know what? Nothing I can do for you. Come back in March and we'll see how you are. At that time, Michelle was going to have none of that. So she got on the. She sent email to Johns Hopkins University. Dr. Mary Gaskas and his nurse emailed her back in three days. Michelle talked to her on the Monday, no, I'm sorry, the lady called Michelle on Monday and said, what have you got? No, I'm sorry.

Later on the week she called her on that Friday. She goes, what do you have on Monday? She said, why? Dr. Mary Gaskins wants to see Bobby at 8am and he doesn't see patients on Monday. But if you can get up here, we'll cover the hotel and we'll see you then. Michelle got me as I don't care what's on your Schedule, cancel it. So Sunday afternoon we went to Maryland. We stayed at Holiday Inn Express. They had a van waiting for us, took us to the hospital.

I checked in. My appointment was 8am 801. Dr. Maragaska walked out and introduced himself to me. And he said, let's go back here. Let me hear about what you're dealing with, is that if you got time, I'm gonna do my own studies on you. So they took every bit of blood you could think of. They put me through another one of those grueling EMG tests that's worse on woman being pregnant.

They put needles all in your body, stick them into your muscle, and they move the needle around to get a reaction of your muscle. And you can't be on any drugs because they want to know exactly how you feel when it happens. It breaking the heart. But nonetheless, he was as compassionate as he could be. And he look right at me and Michelle is up, you have ALS. And that was April 3rd of 17. So they base ALS on first diagnosis, but they base her through the five years of first symptoms. So I was officially diagnosed April 3rd of 17, but my first symptom was June 16th.

Three to five years, two to five, basically. ALS has been around now for this year, 150 years. The first person diagnosed with ALS was by a French neurologist in 1860. So it was not nationally recognized until 1938 when Lou Gehrix got. He died in 1941. He left three years. And actually last year at the Diamond, I got to read Lou Gehrig's Last Feast of Baseball to the audience before the game. And that was an honor to do.

But again, that's what was nationally recognized. At any given time, 20 to 25,000 people in the United States are living with ALS. And every 90 minutes someone either is diagnosed from ALS or dies from ALS. Is due to five years, because that is the average. And there's no rhyme or reason why somebody gets it. It's not discriminatory on the age of a person or what they did in their life. They actually have juvenile ALS. I know two kids, 7 and 9 years old right now living with ALS.

And that kills me because I'm 50 now. I've accepted it. What are these kids thinking? That bothers me. But in 2014, Vic Harper died of ALS. He was a professor at VCU. He also write five best up new York Times of slip. And when he died, a lot in his fortune. He put into Harper's Hope, which is now the research, the fundraising organism for the fundraising for ALS research at VCU.

And Dr. Boda, I'm very fortunate to have him. He's a young doctor, he's very good, and he's right here in Richmond. So I don't have to go to the Mayo Clinic or Arizona or Johns Hopkins or uva, because I got him right here in my back door. And they are the most wonderful people. And I have developed some very close friendships with three or four of the other people living with als. Just like last Friday night, we did a Harper's Hope fundraiser at Marlinborough Country Club, and the Embers played there. We had over 300 people.

And Jerry Crehan used to be the president of Meadowborough Country Club, and he actually is three miles from me and has the same thing out there in the wheelchair because he is starring in his legs.

So,

No, Every single person is affected by als. Differ. Most people are. It starts in their legs, and it is 64, the men versus women, but they have what they call limb onset ALS, which is lower limb or upper limb, which is what I have is the lower limb. They also have what they call bulbar als, which starts in your face. If it starts in your face, you definitely don't make it past 12 months. Because with ALS, what takes everybody is your inability to eat, breathe, and swallow, because that's all muscles. So.

And if you ever watch the movie Gleason, it's very compelling, but it's Steve gleason living with ALS, and he even says in this movie that 95% of the people living with ALS choose not to go on the ventilator because that just will extend your life. But there's no quality of life, and for most people, they can't afford it. They say that every patient living with ALS, it cost them 150 to. To $200,000 a year. The insurance doesn't cover. And going on a trick and needing full time care is an expense that most people can't endure. So. And my son Stephen told me, he said, dad, I want to remember you that way.

So I talked to the kids and my wife and said, you know what? Just understand I'm gonna get the feeding tube, which I already have. I said, but I'm not going on a ventilator. I'm gonna go as long as I can, but I'm gonna go when the Lord's ready to take me. And they all understood because the last thing want to do is leave my family in debt. I want to make sure that they can. You know, my job as a husband and a father is to take care of them. And though I'm not going to be here anymore, I still think that's my job.

All of that. And it brings up a good point that you mentioned that because so many people when they have a diagnosis that is true would make this twice to either right or not too plain basic. I love the fact that you have looked at, you know what is going to happen and what's going to happen down the line and have a have that base tip and talk about and have thought about it. Do you think that helps you live better each day since you can tell?

Okay, well I tell myself every day and I tell people because I want to hear myself say it that my life doesn't suck. My circumstance does. And having said that my life doesn't suck. Why make the rest of what I have be that way? And ALS will rob me from everything physically but it can't steal my joy. That's me.

This most beautiful thing that I worked and it's so true. And I think what has attracted me to your story just scrolling through your Facebook page and scrolling through your website is that's what you what you show

you should quit and but also have reason to add that because I told all my friends if at all possible I realized and don't get me wrong, I had bad days. Michelle and I sat on couch sometimes and cry our eyes out but we get over it and we move on because and so many people I've told as I was getting worse to please don't treat me any different. And if you look at one of my posts that Renee Zellweger put on Facebook, she's got a dear friend with ALS and as she says right there, if you're nervous and you don't know what to say or act around somebody living what they're living with, please remember they're still that same friends. And even if you just show up and don't say anything, it means enough.

And that brings up a great point too talking about friends. The thing that inspired me with your story is the fact that you have had an amazing response from your friends and family. People that we wish about here that you built relationships with over the years are so kept fundraising you mentioned have you launched parties? Tell me a little bit about how those people have helped you get

well as I've lost my abilities to hold a fork or or whatever and now even chewing gets difficult. We sent Michelle and one of the girls from my old BNI group set up a lunch genius app on that people can sign up for and now that Michelle gets off half a day, it's not as pertinent because you can come home and have lunch with me. But I've also told everybody, if you still want to come just for the fellowship, then I encourage it. But up until Michelle twitcher schedule, people different would come every day, and we either go out or they bring food. And they would sit here and feed me every bit of my food because I can't do it myself. And the need was there, but the fellowship was just as important to me. Some people can't deal with things like this, but other people welcome the opportunity to help. And Suzanne Hazlett, that owns that cleaning service and power team, she has helped me with clean the house a few times with gift cards.

And somebody else in the group one time went up to her early on and said, I want to pay for a cleaning for Bobby and Michelle. Suzanne told me that Suzanne, we're okay. We don't need that. And she told me something very profound that day. She's a Bobby, let them do that. She said, don't ever take away the blessing that somebody wants to give you, because if that's what they feel like they can do to help you, don't ever take that away from them.

Everybody should take to heart because Smith

Hopkins, like he says, some people aren't

quite sure what to do. And if they feel that they're called to do something as simple as pay to have her house clean, yeah, that's going to help them.

Michelle is, for lack of better words, dead dog tired at the end of the day. Between doing her job and helping me, doing something like that is enormous. And other acts of kindness have been done either anonymously or right in your face. And number one, it's needed. But more than anything is so appreciated.

We talked earlier before we started recording. You love enjoying, you know, the days that you have, but there were things that you needed to research and be prepared for when you go out. And I think there's one thing that people don't think about. So tell the story that you talked about going to the after the concert this weekend.

Well, the biggest thing for me, of course, is something people take for granted is going to the bathroom. And I mentioned that Michelle, I drive her crazy because he works all weekend. We can't get there. I'm ready to go. And she does it like it's true for him. But they're having the village vibe in Powhatan and backpacks for love is being raising money for that, which I want to support Bobby Fulshear for that because I try to support people even though I got freaking problems. But I love listening music and that's why I always go to music venues because literally I enjoyed the fellowship. Also the music makes me forget about what's going on with me.

But there it's an open venue, they got porters. And I don't know because of my situation, you know, because I need help going to the bathroom and two people camp in the frigging border zone. So not being sure about that, we just don't go. But it's not because we don't want to.

Mostly people will see. Sometimes things we take for granted are things that you need to be well aware of. And the smoking.

Yeah, everyone wants to ask. Some of my favorite bands play it venues. A lot of smoking inside and literally one cigarettes around me. It takes my breath away because I don't have much anyway. And if I know ahead of time that they do offer smoking, I just have to say I'll catch it the next time because I want to put myself through that and make the people around me miserable worrying about that, that know my problems. Because the other things I do if it's going to be difficult, like I could have been leaving for the Bahamas day paid for. But because of the flight and because of everything else that would be involved in being offered this at the last minute, we turned it down. But that's okay because I'd rather do that than make a half a dozen people not be having a good time because they attended the me

so much. Because the daily

I get up in the morning prior to having these wonderful people help me. Michelle would get up at 6. She'd get herself together. She would dress me, she would brush my teeth. She would come walk me in the air, fill up the cups on the table so I could reach them and give me my 42 pills in the morning and I could lift my hands. I couldn't do it myself. So she would make sure I took all my medicine and walked me over there and set me on the couch and I would be here by myself until lunch. Person came.

But then I still had enough leg strength to go to the bathroom on my own. Well, just last couple weeks my stability and my balance has got a lot worse to the point that I can't be by myself anymore. But I also have to have somebody that has. Yeah. Bill to handle my big butt. Yeah. But so now Michelle getting leave for work, which she's supposed to and Melinda or kind of get here, they brush my teeth, they give Me my medicine. They help me to the bathroom and then they leave.

About 12 o', clock, Michelle gets up at 12, she comes home and her company allows her to log in and work from home the rest of her day to get her hours, in, which they say that Michelle gets more done here than she does at work because she gets pulled from a hundred different directions when she's there. So we'll have lunch together, then she'll go back in the back room and work. I'll sit out here and she comes if I need her. So that's the consistency of my day, is she either makes dinner or we'll go somewhere, load the wheelchair up the band. On the weekends, like I said, unless we have plans, we go listen to music.

I love it. That music is so much more.

It didn't used to be, but it certainly matters now because it's very much a deterrent of taking a negative thought out of my mind because I could have so many of them, but I've just refused to be that way.

So we talked about, you know, what your days are like.

Yeah.

What kind of plans do you try to make? You have two hair events that we talk about coming up.

Well, first of all, what I do is I live 30 minutes at a time. And what I mean by that is if I make it to another 30 minutes, it feels like an accomplishment. And I plan for six months at a time, and I do that because I give myself something to look forward to. And we have two events coming up in May. May 5th is the Queen Classic Fighting ALS. I'll be honest, that's the first true fundraiser for me and Michelle, other than Country Kick and als. That happens every year that Tommy started for me a couple years ago. That's in September.

That's been awesome. That's also going to help a few other families, too. So it's not specifically for me moving in because because of the expenses that incurred, we're having the golf tournament. And what my goal is for that is, while I'm still alive, I wanted to be the Queen Classic Fighting als. After I'm gone, if people want to continue that golf tournament, I want to change it to the Quentin Classic Memorial Ralph Tomb and raise money for Harper Self for research if they want to. That's what I like to do. And then I raised Harley's for a lot of years, and some friends of mine decided that they wanted to do a fundraiser at Colonial Holly Davidson on May 18. So having said that, they're gonna have a ride in the morning from at 10 o'.

Clock. The registration sounds like it's going to be huge, but they're gonna go on a 60 mile ride and the hall chapter is providing a sidecar bike and they're going to take me on the ride. And then at 12 o', clock, two bands will be playing Southern Tide from 12 to 2 and south of James from 2 to 4. And then the dealership closes it by and then there's an after party, a Tilted Guilt right around the corner. And some of the proceeds sold there will also go to Michelle. And I'm gonna have a merchandise table with all my clothing, hats with Team Quinn and selling them at the event and until the end of the golf tournament.

So since you mentioned that.

Yeah, if you go to my website and you can buy them on the website, it's got a merchandise page page and you can pay for it because it's tied directly to a square account on no name. I don't. I put very low markup on them. These are more for awareness. The T shirts that. No, the T shirts say Team Quinn. The long sleeve tees and the hoodies have Cure ALS down the sleeve. And then the hats are coming.

I've got white, navy and khaki. And they say Team Quinn on the front and they say Cure ALS over the back. And they're in borders, so they're on the way. Perfect. Yeah. Actually. Well, all we do has, and I haven't seen her in probably 25 or 30 years. And then when I started posting this Team Quinn stuff on Facebook, I had friends coming out of the woodwork saying that they wanted a shirt.

And all these people buying these shirts have to realize they better be out there in October walking with me on Brown's island and making my team bigger.

Maybe Lindsay can do all your body, but that spirit's still in there, huh?

I promise you, Linda will tell you she. Like I said, this girl, along with many other people have been in my life a long time. And for that I'm thankful. Yeah. Come here, Sarah.

You on the spot.

And this is Sarah Wner and she has been a consistent lunch buddy for months because I can't feed myself anymore. And this girl not only feeds me, but she even loads me up in the car and takes me out for lunch sometime. So that's a extra treat. But if you ever want some really good photography, aerial wise or whatever, Sarah Widener is the girl because she is awesome. You just take anything you got and make it look as good as it can. It's Eastman Creative. And not only can she beat me good. She's the Oliver photographer.

Thank you.

I guess they have wonderful people in my life.

So as we kind of close off

here, what do you want people to take away?

The biggest thing is that we can't control. We can't control. And with that being said, none of us know what we're gonna face one minute from now. The only guarantee we've got is what's in us right now. So live every minute you got. Positively love the people that are around you. And if you are faced with something that gives you a shorter period of time, do and make the most of that time that you have. And the more you stay positive about that, I believe the more time you will have.

He's such an inspiration. I love it, and I really appreciate you taking the time. I know this was a big stretch. Thank you.

But, Gene, the biggest thing is you've always been funny as hell. I mean, seriously, do what you want. But seriously, every time I've seen you, even when we had a couple issues with your H Vac, you were always still very kind about it and realized that we were going to find a resolve. And I don't get those things.

I hope that you were as moved by Bobby's story as I still am. And you might have noticed I left that final little moment of the interview. Even with everything that Bobby was facing, he still took a moment to encourage someone else, to compliment someone else and to make another person feel seen. And honestly, I think that says everything about who he was. During the interview, Bobby said something that has stayed with me for years, and his comment was, my life doesn't suck. My circumstances do. I have thought about that line many times since losing both Bobby and my dad. In the fall of 2017, my father was diagnosed with colon cancer that had spread to his liver.

We were told that he had three to six months to live, and by the grace of God, we had him for a year and a half. Like Bobby, though, my father refused to let his diagnosis define him. They both remind me that while we can't always control our circumstances, we can decide how we show up inside of them. So I've got an epic message for you today, and it's this. Some people lose their joy long before they lose their life. Bobby never did. And maybe that's the reminder for all of us this week. Don't wait for the perfect circumstances to keep living, keep loving, keep showing up, keep encouraging people.

Keep finding moments of joy whenever you can. For your epic challenge this week, after listening to this episode, do one intentional thing to support or encourage another human being. Reach Out Check In Donate Share this episode Tell someone that you love them and then go to my Facebook page and comment. Listen to my post for this week. Every person who does. I'll donate a dollar because humans need humans and none of us are meant to do these hard things alone. Bobby, thank you. Your story still matters.

Thanks for hanging out with me. If today's episode struck a chord with you and you want to spread the love, please share Share using the hashtag epiclivingpodcast and leave a comment on my Facebook page. Head over to my website epiclivingwithjean.com to learn more about what it means to live epic. And while you're there, download a free guide, 7 Ways to Start Living Epic, and it will help you take your first step. If you want to learn more about my Dream Manager program or just want to chat about what Epic might look like in your life, reach out to me and let's set up a call. See you next time. I hope you go out and live EPIC today and every day. And remember, it's all about the story.