“This COVID pandemic closely resembles a diagnosis like ALS. When I choose to see the trial or adversity as an opportunity, I'm able to accept and acknowledge the reality of my situation rather than resist or deny reality,” says Steve Gleason. Discover a truly inspiring conversation with the wise and resilient former NFL athlete. For more information about Microsoft's In Culture podcast and to read the transcript, please visit: microsoft.com/inculture/podcast
“This COVID pandemic closely resembles a diagnosis like ALS. When I choose to see the trial or adversity as an opportunity, I'm able to accept and acknowledge the reality of my situation rather than resist or deny reality,” says Steve Gleason. He’s fought tirelessly for policy changes that have transformed lives and made crucial technology accessible to others living with ALS. In this episode, Steve reminds us what a gift it is to be alive, as he delves into finding purpose and strength in fatherhood. Listen on for his insight on our current state of social isolation, and learn more about Team Gleason, an organization developing innovative technological solutions that give back so much of what ALS takes away.
Lacey Henderson: Hello and welcome to the In Culture podcast. I'm your host Lacey Henderson. And today I'm speaking with former NFL linebacker Steve Gleason remotely via Microsoft Teams. Steve has ALS and is in Louisiana, currently with his family and I'm really, really excited to be able to chat with you, Steve, finally, thank you.
Steve Gleason: Hi there, Lacey. Good to see you. And thanks for taking time from your busy schedule to do this.
Lacey Henderson: Listen, I know you're very busy as well, and we'll get in to all what you do. But so you played professional football in 2006, right after Katrina, you blocked a punt in the first game that the Saints played, after everything was rebuilt and everything. And it changed like the course of the team. And it's like the more I think about it, I'm like, this is like a story type like ending with resiliency, with the team and even with the whole city of New Orleans. Do you think that that resiliency, not just from that moment, but from your whole career in sports, do you think that that has carried over for the way that you've adapted to living with ALS?
Steve Gleason: Without a doubt sports and especially football are helpful in learning necessary life skills like resilience. From my journey with football, I learned so much that I would later lean on with the disease as dreadful as ALS. I was a linebacker in both high school and college, but I faced a problem. I was too small to be an NFL linebacker. So in order to break into the NFL, I would have to take a hard look at the reality of my situation, get ultra creative with the talent I had and make some transformations to myself and my game. I ultimately played in the NFL for eight years. And you might not know the average NFL career is only three years. In order to play the length of time in the NFL, I had to implement many elements of resilience. What I have found is the only way to transform our world. We must first transform ourselves. Years later, I would rely on my NFL experience of accepting the reality of my situation to transform myself and grow stronger. I would lean on that experience in 2011 when I was diagnosed with ALS. My success in football taught me that our true power doesn't lie in our physical strength or abilities. It is the mind and spirit that provide the true wisdom and power. Over the first three years after my diagnosis, I lost nearly all my physical abilities as a result of these physical changes, I've had to be resilient in nearly every single aspect of my life. One of the first changes I encountered as my physical body began to decline was learning to accept and become comfortable with no longer being able to go running. Like so much in all of our lives, this change, my loss of the ability to run was the bleak reality of what was going to happen. And I knew that the loss of the ability to run was just a beginning. Walking, talking, showering, wiping my butt, the losses would continue to mount. I became despondent and desperate living with such enormous losses seemed pointless. You see, not only did I love running, I was really good at it. I was so good that I made an entire career based on my ability to run. That was part of how I found meaning in my life. Without meaning, it's mostly impossible to choose resilience. When I finally did lose my ability to run, I had to make the choice. I could either become bitter, resentful, and stubborn, or I could become accepting of reality, vulnerable, and resilient and repurpose my life.
Lacey Henderson: Okay. So, I know, I've listened to a bunch of interviews that you've done, and I've heard you like speak a little bit before about missing the little things that your disease took away from you like even helping with chores around the house. And the one that was notable to me, it was crushing an entire roll of sushi, which is... that's important in my life. So I totally get that. And even right now, like having a conversation that doesn't need to be refereed by technology. And so we can't avoid that we're in the middle of this COVID-19 pandemic and people, regardless of able bodied, disabled, whatever spectrum you're on of ability where everybody's feeling this absence of little things. And that could just be being able to go for a run. Like you said, that could be being able to see your family. Do you think right now, in this moment of quarantine and restriction, that there's almost like an opportunity presented for more people to better understand issues that people with disabilities, like all like an ALS disease diagnosis have been facing since way before this pandemic?
Steve Gleason: Right. Whether real or perceived, humans across the globe are uniformly experiencing a loss of control with the COVID crisis. People are confronted with little ability to work income and health crisis, loss of loved ones, isolation, distancing, adapting to a new reality, and unprecedented restrictions. These are also what people to live with after being diagnosed with ALS. The pandemic has brought to the surface many of the challenges we all experienced through our progression with ALS. Like the current environment, ALS is unpredictable in how it affects each individual, both physically and emotionally in a weird way, people living with ALS were better prepared for these drastic changes. Additionally, people are scrambling to find anything to stop or slow the spread of COVID-19. Like ALS, we are also struggling to find anything to stop, slow, or reverse the disease. Although the urgency is much greater for COVID and infectious disease.
Lacey Henderson: I know, I think... I was like saying in the beginning of this whole COVID-19 thing... And this is dark, but I really do feel like people with disabilities, it's our time. Like we finally have an upper hand, at least when it comes to adapting to having things taken away. Do you hope that like maybe the globe, the community outside of disability, outside of the ALS community, do you think that there's like a takeaway moment that they can take from this time in history?
Steve Gleason: I believe we are resilient beings and we can make the choice to embrace that ability of resilient rather than allowing the struggle to be consuming. I chose to accept the reality of my situation and got innovative with tools that I could access to create meaning in my life and transform myself to ultimately grow stronger. Ultimately I believe that trials and adversity are our opportunity to learn and grow and improve. If people can adopt this as tenant for living triumphantly and compassionately to become stronger as a human family, this will be a fine moment in human history.
Lacey Henderson: Yeah, no, I agree. It is an opportunity. So, what changes has it brought in your daily life? Like I know that we keep... We've said that we're adaptable and we can get used to restriction, but surely it's also changed your life as well. What are those changes look like?
Steve Gleason: My answer may seem surprising, Lacey, or even absurd, but ALS is a disease that quarantines and isolates in its very nature. So in a way, for the past nine years, our family has been experiencing something similar to what the world is experiencing right now. We are well adapted to finding creative solutions for isolation and quarantine. This COVID pandemic closely resembles a diagnosis like ALS. In my diagnosis process, I have learned that when I choose to blame others or my circumstances, I become the quote unquote victim and thus give up my freedom and my power to create solutions. On the other hand, when I choose to see the trial or adversity as an opportunity, even a gift, I'm able to accept and acknowledge the reality of my situation rather than resist or deny reality. That acceptance and nonresistance, which is not easy, puts me in a position of growth in presence that more often than not brings about solutions in abundance that are truly awesome. The past two months, while we have taken dramatic measures to keep me at as low risk to exposure as possible, considering the changes, adaptations, and solutions we have been through in the past, the COVID measures have been relatively minor. The surprising and potentially absurd part of this answer is that over the past two months during our conversation and gratitude time during lunch or dinner, my family has expressed that this time of quarantine and isolation has been the best two months of our collective family existence. As a father and husband, hearing that from my family is quite fulfilling.
Lacey Henderson: Yes, yes. Everybody needs to hear that. I feel like we all need to be reminded – one that like this isn't even necessarily restrictive. I think the mindset shift to viewing it as an opportunity creates things where you have that, where you're like, "actually we're having a good time." Like I've never been closer to my family at this time. Like again, that mindset just comes from like when you're just constantly striving towards reaching a goal that you're making. And like with sports it's so funny because it seems so contrasting to disability. It seems so contrasting. It seems like the opposite of ALS, but at this at the same time, the mindset is almost the same. You're constantly striving towards a goal and you just get creative on the ways that you get there and you have to be really, really present in the moment. I think that was like the big thing that I'm getting is you guys are probably nailing it a lot better than most people on being present. But anyway, I know you actually... When we were doing like prep meetings, we were talking about like what we would want from the audience listening. And we know that like a lot of people listening will probably be from the ALS community. I called you. I was like, "He's basically Beyonce for the ALS community right now." And like the reason why I said that is you've done so much and I don't think Beyonce has changed any policy, but you have, and you actually went to Congress. You changed policy regarding the technology that's really critical for people with ALS and similar diseases. And I'm just curious. Do you know the current state of these technologies? And can you just explain why they're important and even just like what motivates you to keep going in your work for that, to be able to strive and fight for that community?
Steve Gleason: I'll take the comparison.
Lacey Henderson: Yes.
Steve Gleason: Thanks, Lacey. Yeah, the technology that was available to me when I was diagnosed was decades behind what toddlers are using today. With the help of groups like Microsoft, our foundation has not only advanced technology, we've found we had to pass the legislation to make the technology available to others. The technology I use now is downright miraculous. I'm able to type, speak, and navigate a computer or a tablet, no different than any of you ordinary humans. I can text, tweet, even pull up any song I want on Spotify. And we've helped develop a program where I drive my wheelchair with my eyes. Technology allows me to control nearly everything in my environment, computers, TVs, lights, thermostats, blinds, and doors, using just my eyes. Most importantly, my utilization of technology has connected me to my wife, Michel, our eight year old son, Rivers, and our one year old daughter, Gray. Being an active and involved father and husband is now my primary purpose. Our organization has a staff that is passionate and dedicated to the mission at hand. It's been remarkable to see the progress and development in the past decade. I look forward to pushing the envelope as we proceed.
Lacey Henderson: So you're able to do the thermostat, which really still is like so funny to me. You're able to drive around your chair. You're able to change the lights in your house, do all this stuff. Where do you think the technology could go from here?
Steve Gleason: Yeah. Great question Lacey. Technological developments for ordinary people are exponentially advancing. In contrast, technologies for people with physical disabilities have not kept that pace. This gap has created a fine purpose for our foundation. The primary mission at Team Gleason in is to provide and develop innovative technological solutions for people with severe disabilities. Ultimately, our goal is to turn people's disabilities into super abilities. The possibilities in this space are truly limitless. I don't know exactly when, but I expect to someday communicate at near conversational speed. Until there is a medical cure for ALS, technology and innovation can be the cure. With our recent meetings and latest developments I believe we could soon cross the threshold of communicating directly from our brains. Additionally, robotics could allow me and others like me to move more freely and independently.
Lacey Henderson: I worked pretty closely with a prosthetic manufacturer and I do agree that technology flies by. That's something that's really exciting because there really, it doesn't seem like there's been any other time in history where disability had so much ability, where it had so many resources. Your kids who I've like the more I've researched about you I'm like, "This guy loves his kids so much. He loves his family so much." They've grown up only knowing you as you how you are right now with ALS, have you learned that there's fundamental aspects of fatherhood or just parenting in general, that those things remain unchanged despite having a disability or not?
Steve Gleason: This is a great question Lacey. I believe that parenting, especially as we enter the depths of the 21st century, is the most important and the most difficult and the most exciting job humanity has. I put a ton of effort and pride into being a solid father. I think the first thing to point out is that despite the fact that I can't move or talk, with the help of some totally innovative technology, great caregivers, a great family and a strong daily routine, I believe I'm able to be as involved and influential as any father. I do think that there are some fundamental aspects to parenting that we as parents can embody to be solid influences on our kids. I also think there are three vital life skills that we can work to instill in our youth. In terms of fundamental aspects of our role as parents, I am working at always learning and growing and evolving as a daddy. So in that sense, I think of myself out on a great adventure as a parent. So I'm learning right along with my two kids. I have two baseline starting points or fundamental aspects as a dad. I see them as equally important. Being truly present with the family is the first aspect. I work to being fully present with my kids always. This is not easy in our day and age. With so much distraction in our lives, the challenge to be fully present with our kids is enormous. While it's part of the job, as parents I don't think presence is the same as giving orders, telling them what to do or disciplining our kids. If telling my kids what to do and what not to do is all I identify with as their father, I've missed the Mark. True presence is experiencing life without distraction, with Rivers and Gray as them, growing and learning, falling and failing with them. Eventually our children will be our equal in stature and knowledge and eventually surpass us. It's an evolutionary inevitability. And Lacey, I quite look forward to that moment. Along with being present, I believe that the other fundamental aspect of parenting is love. Unconditional love. I want the Rivers and Gray to know that no matter what I love them forever. This may sound like the wonderfully ridiculous notion. But more and more I believe ultimately our kids are our soul brothers and our soul sisters. And I will love them as such. That will never change, ever. And as far as the three vital life skills that I'm working to share with our kids, I think that the skills of focus, resilience and compassion will end up being critical superpowers as we proceed to the exponentially changing 21st century. Really, I'm being a bit long winded here Lacey, but I'm pretty passionate about this topic. I researched this a lot and I seem to learn new information and expand my perspective every day. Also, I think we are at a critical point in human history with astounding challenges and equally astounding opportunities that we face and we will face. With the advancement of technology in our relatively recent history, we humans have infinite amount of information right in our pocket or if you're like me, right in your face. These advancements will exponentially continue. With all this information most of which is complete rubbish, the ability to focus on the task at hand is all too important right now. Within the not too distant future, this information will be interfaced directly with our brains. As a result, our children's ability to focus on the task at hand will certainly be a superpower. It's quite likely that we will experience more changes in the 21st century than humanity has experienced in all the previous centuries in our history. Enduring change is often painful. As you well know Lacey, becoming better and stronger after experiencing change requires resilience. I believe resilience is found not by keeping our kids safe from the all struggle or pain, but by guiding our kids and providing them with the confidence and the skills to learn and grow from the adversity and struggle that they experience. Already in the past two decades of this century millions of people have been replaced by automation, the algorithm and robotics. This drastic change has caused pain to many of those who were replaced. Without resilience as a superpower life skill drastic change can cause people to lose purpose. And at least in my journey with ALS where I experienced so much dramatic physical change that I began to feel isolated, irrelevant and I lost purpose. A life without purpose Lacey is no life at all. Drawing further on my experience I have found that at the core of human purpose, a pillar of being resilient is compassion. Compassion. Compassion is putting yourself in the circumstances of another. Working to understand their outlook and their situation, to see yourself in them is compassion. I believe that compassion has always been a superpower, but even more so as we learn to live as a global family, having the ability to be compassionate towards others inspires purpose. Suffering with others, inspires us to communicate and collaborate, to create powerful solutions. I would add that in its purest form, compassion is at the heart of capitalism. If my generation of parents can be fully present with our kids and be sure that they know we love them unconditionally, we can work to instill focus, resilience, and compassion in our legacy, our next generation, the generation that will embark on the 22nd century. If this generation of parents can do that, we will be in good hands, focused, and resilient, and compassionate hands.
Lacey Henderson: Dang. I mean, you're right. I always think like every time I'm around kids, I'm like "these are mutant geniuses." And also if you compete against kids nowadays, nowadays, the kids that I compete against, 18 year olds, mutant talent out there on the track. And I like the way that you said at one point you were like it's more of guiding them to focus, resilience, and compassion. And I like that because I think sometimes we just get it wrong. We think that we're teaching other people. We think that we need to teach this generation. But for a followup question, have you noticed that like that your kids maybe are teaching you some stuff?
Steve Gleason: Although without a doubt, Lacey, I've learned so much more than I ever thought possible from Rivers and Gray Gray, I learn and grow as a father, and husband, and a person from my experience with them. From Rivers, I've learned from his example of being sensitive and patient with me, he's wonderfully compassionate. It's inspiring. Gray Gray is a great example of an Explorer child. She's wonderfully resilient. Also, I'm not able to do a lot of the duties of an ordinary daddy. So I'm grateful and amazed by Michel. We've been through so much pain together, and ALS is a disease that quarantines and isolates people, her strength and forward to, to this truly something that she found deep inside herself throughout the last nine years. Michel is a complete champion. This is not the life we imagined and that hasn't been easy, but through communication and compassion or living an awesome life.
Lacey Henderson: So I had childhood cancer and regardless of whatever it is, the thing that you go through, we forget that we rely so heavily on our caretakers, on the people that take care of us, and the way that for me, cancer didn't just affect me, it affected my family in the same way. With you, ALS, you're not the one living with ALS, everybody in your family is living with ALS.
Steve Gleason: Right. You're exactly right.
Lacey Henderson: I saw that a little bit with like your relationship with Michelle was amazing. And I saw it with the Gleason documentary and it was amazing. The documentary starts right around your ALS diagnosis. But then you're also, you and Michel also find out that you two will be expecting your first baby. The documentary, basically what I've gathered, is that you decided to do video journal entries for your son so that he could know who you were, who you are. And I was just wondering if they have they seen, I know Grayson's young, but has Rivers seen those video journals that you made for him? And like what's response been?
Steve Gleason: This is a pretty quick answer, Lacey. They have not seen the video journals. We're living life, learning and growing together every single day. In that sense, I suppose we're writing co-author journals. Since I was given such a short timeline when I was diagnosed with ALS, I do not take these coauthor journals for granted in any way. I drink up the joyful moments, right along with the painful moments. This has been the best gift a person can have.
Lacey Henderson: I like that. I really do like that. I mean, I think it goes back to you talking about being present, like what's relevant right now is who we are right now and who we're with and who we love. We talked briefly previously about some of the high visibility advocacy work that you do on behalf of the ALS community, but you're in everyday advocate with your immediate community. And I know that you've been involved with your kids' schools and you've helped with coaching and like, you're great at just being like a regular old dad, but understandably a lot of that stuff is not necessarily on the front line, like going to school right now, but what do you feel about like your immediate family and your immediate community that's just as important and impactful as the stuff that you do that makes the headlines?
Steve Gleason: I'm quite certain, Lacey, that my most important purpose is to be a guide and be example to my family and in our personal community. The headlines and public acknowledgement is simply a byproduct of that work. Acknowledgements come and go. Yet true purpose remains.
Lacey Henderson: Wow. That’s super powerful. I think we forget, like, no matter the outcome of anything that we set out to do, the true purpose really is the driving force of that. I knew this conversation was going to be really special, Steve, but I am blown away. I feel like I’ve learned so much, not just about myself, but about other people, and just about maybe where I can grow a little bit more compassion perception of someone else, so thank you, Steve.
Steve Gleason: Thank you so much, Lacey. These were excellent questions and it's been nice to get to know you a little better through this process.
Lacey Henderson: Thank you. It’s been really good getting to know you, too, Steve, and you know what? I try to ask interesting questions, so I appreciate that. If you would like to know more about Steve and everyone we feature on the In Culture podcast, check out microsoft.com/inculture. You can also find us on Instagram @MicrosoftInCulture. Thanks again, Steve.
Steve Gleason: Thanks you so much. Peace.