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This week Jeremy talks to Lamar Woody, who was diagnosed with ALS in 2018, about his life, his family and what he’s doing to help create a world without ALS. To follow the Woody family’s story over the coming weeks, check out The ALS Association’s blog at https://www.als.org/blog
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Lamar Woody:
Those of us dealing with any type of terminal illness where we can manifest the joy of music or the joy of art as an expression that kind of works to combat this thing, combat whatever it is we're facing.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. In 2018, Lamar Woody was working as a master barber and music teacher in Auburn, Alabama. He lived with his wife Kristina and their four-year old daughter Natalie. Lamar was 30 years old. Everything changed that year when Lamar was diagnosed with ALS. Lamar and Kristina have partnered with the ALS Association to tell their story over the coming months in order to help raise awareness and support for the fight to help make ALS a livable disease and ultimately to find a cure. So this is one of those moments where the less you hear from me, the better. Let's hear from Lamar. Well, Lamar, thanks so much for being with us this week on Connecting ALS.
Lamar Woody:
Yes, yes. Glad to be here.
Jeremy Holden:
Well, let's just start back at 2018. Talk to me a little bit about what life was like before your diagnosis and a little bit about how it changed when you learned that you had ALS.
Lamar Woody:
Before learning that I had ALS, I was a very adventurous person, full of tenacity, full of energy. And I still consider myself to have a lot of energy now. But then, end of 2016 going into 2017, I start noticing some different changes with my gait, with my walk, my step is just changed, just I started noticing physical changes really in my legs. So we went and it actually became such an issue to where it did get in the way of work. And so at that time, that's when I decided maybe it's best that I don't work because I was already being inconsistent, not showing up, always missing because of dealing with this. And I didn't know what it was, but then started the journey to go try to figure out what it was. It was about maybe a eight or nine month process. And then upon figuring that out and realizing what it was, first I had to deal with the acceptance that this is what it is. Sometimes even still working to accept that today.
Jeremy Holden:
You and I were talking a little bit earlier, you mentioned that the fact that you were an athlete. Talk to me a little bit about that change, being that part of your identity is around athletics.
Lamar Woody:
Yes. My wife and I had a pretty nice size group of 15 or 20 people we were leading and working out. And I don't know, that's the depth of how much I've been an athlete my whole life that I even decided I wanted to, well, let me try to become a personal trainer of a sort. But really I just started working with friends and then it grew. And we began training people and working out and exercising, and that is just basically a product of my past, of me being an athlete. I ran track, played football, I've done martial arts and just, I don't know the variety of things that I've done physically in my past when it does come to sports, and just being outdoors now, realizing the inability is there where I can't do those things. It's like I have to keep reiterating to myself now that maybe I can't do those things, but I can try to adjust and find a way where I can still enjoy some of those things. But it is hard at times.
Jeremy Holden:
What do those adjustments look like? What are things that you are maybe doing now that you didn't do before, or how are you channeling some of those energies into other pursuits?
Lamar Woody:
Here at Auburn University, I'm taking a drawing class. And typically I use my right hand for everything, but my right hand began to act up some days when we were actually having to draw a picture and so I decided to do it with my left hand. So that's been a major adjustment. And just, we've moved three times into a new home to go to, one, for more affordability and now for more accessibility. And just seeing those things, seeing those changes now, making those adjustments and how fast this happened. All of this has happened within four years or so. We had to make these major changes. So it's eye-opening is an understatement.
Jeremy Holden:
You talked about how some of the changes to your professional life. Talk to me a little bit about that journey as you start to contemplate, can I continue working and what comes next?
Lamar Woody:
Right. Yeah. A lot of days, I mean, I felt like something was wrong, something underlying. And me and my wife have sought that out, but I never thought that it would be what this is now, be ALS. And so me becoming a professional barber as well as a professional piano instructor, everything I did is with my hands. So it's just everything, from working on cars to all of it. But those two things in particular, which is so heavily focused on hands and I haven't really had much issue with my hands, but as of late it's starting to kick up a little. And so I'm starting to realize, okay, well, let me see how... I've had to stop working, but now how I can adjust to where I can still enjoy doing the art and doing the music.
Jeremy Holden:
You mentioned your family a couple of times. Talk to me a little bit about your family and how this has changed them, how they're responding. Tell me a little bit about your family.
Lamar Woody:
Okay, perfect. Yes, well, my wife, she's actually a registered nurse and all she wants to do is now be home with me and our daughter, Natalie, who just turned nine. And so it's a thing that's bringing us closer together because we want to be physically in the same vicinity as each other, now more so. But that's kind of difficult because Kristina actually has... She's a travel nurse so she travels. And so we go days without seeing Mommy, and it's one of those things that's very heavy. I mean, we've had to do that of course for affordability of life and just sustainability. And so watching Kristina just try to work through that, work through those changes with work has been the biggest thing because she's gone from working at one hospital to working at another hospital to working at an elementary school to teaching on the high school level, health sciences. Now you're traveling to try to figure out how we can really live with this.
And then our daughter, Natalie, she's very optimistic because Kristina and I are very optimistic. So she's very optimistic, but she does understand and she voices to me maybe about a year or so ago that she understands that ALS normally ends in death. And I think that's when she began to really... She was able to wrap her mind around what she was dealing with because she's been seeing Daddy deal with this since she was four but not really understanding what it was until she was seven, eight years old. She's like, "Okay, I'm starting to understand it now." And just watching her grow up, I've always wanted her just to be a kid, like you just be yourself. But when she wants to come run and be my cane, so to speak, or be my crutch, hey, of course I'm not going to lean on her, but I'm going to put my arm on her and let her feel that.
And that's something that I'm getting much better with, understanding that people around me for the most part can't empathize, but most can be very sympathetic to the reality that this is dishing out. And I even had to change that in myself to where I could actually respond to Natalie that way. So now when she comes to me like, "Dad, can I put your legs on the couch?" "Sure." Little things and just watching her become more helpful, but at the same time maintain her childhood is just that's a blessing.
Jeremy Holden:
Now Lamar, you mentioned Natalie's experience as a young caregiver. And I've had the opportunity to talk to several young caregivers about their experience and one of the through lines that I've heard, and in fact it's one that comes up in the association's guides for kids and young people in the ALS community, but that is a sense of isolation and maybe this recognition that there aren't a lot of kids around you who are going through the same thing. What have you observed with Natalie in terms of her peer support network?
Lamar Woody:
She realizes, and I know she realizes there's not another kid around her, or at least in this area, that's dealing with what she's dealing with. And so just watching her and how she copes and how she even adjusts when she's around them to not look like, "Hey, I'm the kid with the sick dad. Hey, I'm the kid, my mom travels." No, she's like, "No, this is me. I'm Natalie. This is my mom, this is my dad. And that's the reality. Yes, you see this, my dad is in a wheelchair most days. Sometimes he may get up, sometimes he may not. But this is the reality."
And I think her explaining that reality, explaining what ALS is and explaining just what she understands about it to her friends kind of bounces back. It's like a reflective support for her own self, because they begin to talk to her about it and they begin to ask questions. And I've heard them have 30-minute conversation about it. I mean, that's pretty awesome for nine-year-olds.
Jeremy Holden:
Lamar, you mentioned taking an art class at Auburn. Talk to me a little bit about your experience at Auburn and the classes that you're taking and your studies there.
Lamar Woody:
Well, I came in years ago, 2006 when I graduated high school, came into Auburn through the College of Science and Mathematics and doing, at that time I was COSAM with a minor in art. That's what I was doing. But then some things happened financially, I had to get out of school and everything and so I just began to work. So then I decided, well, you know what? Hey, let me go back. And something else that I don't think people know because we don't really advertise it, but upon me going back to school, I ended up having to do a medical withdrawal, and this was 2013, because Natalie was born two months early. And so that sidetracked us with me going to school at that time. And so I stayed out and worked even more, but then I decided to get back in and everything. And when I got diagnosed, that's when it really erected inside of me to say, You know what?
I really want to figure out how to make this livable, but how to make this curable. I haven't really been behind the science behind it since my diagnosis, and it wasn't just abrupt because I mean, that took, like I said, about nine months. But me coming into, like I was telling you, that acceptance time where I can, you know what? Okay, I'm dealing with this, this disease. I'm in a fight against this disease. So now what can I do to defeat this? What can I do to conquer this? And that's when school popped in my mind, I'm like, I can get back in school. So I got back in school and thinking, you know what? I could do human development, family science and some neuroscience. And that's where I am now, that's what I'm doing now. So taking a bunch of science classes, and the art class is wonderful because I've been an artist my whole life.
So not necessarily doing art therapy, but having ways to where those of us dealing with ALS, Lou Gehrig's disease, motor neurone disease, any type of terminal illness where we can manifest the joy of music or the joy of art as an expression that kind of works to combat this thing or combat whatever it is we're facing. And specifically I'm choosing only art and music, visual arts and music is because that's what I've been doing and I understand it. So I'm just trying to create a actual career out of trying to solve a problem. So that's where I am.
Jeremy Holden:
So I have to ask, tell me about the Woody way.
Lamar Woody:
My motto, man, is just living life a moment at a time. And not to get sentimental, but just being real, we have to have pliability, we have to have some form of mush, something there that's soft that can be pliable when everything else we're dealing with is like this hard crust that's shelled over and it's becoming this immovable thing. And I kind of take that analogy and think about ALS because I know that I'm trapped within my body, but yet I know everything that's going on around me. I can understand everything. I'm in my wheelchair some days and I'm out, I'm heading to class back and forth. And I created this thing called a chair chat where I just give my thoughts at that moment, and I'll post a video of it.
But there are times when people have texted me and like, "Man, I was waving at you, you didn't wave back." I'm like, "I was waving. I just couldn't get my hand up fast enough." That's something I would've never thought about years ago or something to be compassionate about. I wouldn't have thought about that. So we tell Natalie, kindness matters. Yeah, the true answer to being great is being kind. That's where greatness derives from is from kindness. And to kind of put into a kind of a box, the Woody way is just living life a moment at a time, the best way you can.
Jeremy Holden:
I love that idea of kindness being the path to greatness. I'm going to try to steal that and use that to guide some of my own days. Lamar, you've been so gracious with your time and letting your story be part of awareness raising here as we head into year end. What is something that you wish people knew about ALS, who maybe their lives haven't been directly impacted by it yet? What do you wish people knew?
Lamar Woody:
Man, the first thing that I wish people knew is that this disease, this illness, I firmly believe can be augmented, it can be slowed down, it can be changed. But those individuals who aren't really aware of what ALS is and how detrimental it is, I would like them to know first that right now it 100% ends in death for everybody that has it. And not to sound like a pity party because that's not it, not a woe is me thing, but the reality is those people suffering think about that every day. Those of us suffer, think of that every day. But we can't let that thought become what defines our actions.
So the individuals who are on the other side who aren't thinking about death in that way, who don't really know much about ALS, who aren't going through it with their families or with their friends or coworkers or cohorts, anyone, I would just want them to know that the first step to support is to have a conversation about it and just tell them exactly what ALS is and then literally, not try to sugarcoat, but then talk about money. Because we all need that financial support, not just for everyday living, but for research. Because that's where this is going to be flattened, that's where it's going to start, in the lab. And that's where I want to be, which is why I'm in school. So yeah.
Jeremy Holden:
Lamar, you've been on this journey for four years now?
Lamar Woody:
Yeah.
Jeremy Holden:
What advice would you have for someone listening who may be on day one or earlier in the fight against ALS than you are?
Lamar Woody:
It would probably change. I don't know if I have one thing that I would say. But I know a few things I would say is to do as much as you can while you still can and make sure it's all positive. Because we don't realize how much we actually remember about all the steps that we've already taken until we start taking new steps. We don't really realize how much we've taken. So in that same capacity, you don't realize all the steps you've taken until you can't take anymore. So I would tell them to make new journeys, make new memories. Do not grovel in pity. I understand it is a sorrowful thing, it is very saddening, but you don't have to wallow in that pity. Get up and keep living your life the best way that you're supposed to.
Jeremy Holden:
Beautiful note to end things on, Lamar. Thanks so much for your time here on the show today and just with helping raise awareness here through year end.
Lamar Woody:
Yes, sir. Thank you, Jeremy. Thank y'all for having me. Thank you.
Jeremy Holden:
I want to thank my guest this week, Lamar Woody. Please make sure you are checking in on the ALS Association's blog and that you're subscribed to Association emails so you can hear more about Lamar and his family's journey with ALS. And in the coming weeks here on Connecting ALS, we'll be talking to Kristina to get her perspective as a caregiver. If you liked this episode, please share it with a friend or two. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It is a great way for us to connect with even more listeners. Our production partner for this series is CitizenRacecar, post-production by Alex Brower, production management by Gabriel [inaudible 00:20:11], supervised by David Hoffman. That's going to do it this week. Thanks for tuning in. We'll connect with you again soon.