Anita Rao
Till death do us part. That line has always kind of freaked me out. There's the whole committing to someone forever and everything, but the scarier part to me is the reminder that no matter what your dreams are for life with another person, the future is unpredictable. At this moment, imagining a future without my partner is hypothetical. But we've both seen up close what it looks like when the hypothetical becomes the reality.
When I first met my partner, John, his dad was in remission from incurable bile duct cancer. Not too long after we started dating, I crashed his family trip to celebrate his parents 40th wedding anniversary, and I was struck right away by one thing. His parents dance together every night.
This dance was born from a vow they made to each other the night before his dad's first major surgery to make time for a nightly dance for as many nights as they could, picking a new song each time. Not long after that family trip, his dad's cancer came back. Over the next two years as his parents grappled with unpredictable health swings while still celebrating life, they stayed committed to that nightly dance, a moment of closeness and intimacy in the face of so much unknown. His dad John Christopher Gardner passed away in July 2018 — and those dances have their own line in his obituary.
This is Embodied. I'm Anita Rao. When you know your future with a partner is uncertain, how does that shape how you build and grow your relationship?
David Peet
The diagnosis really threw us for a loop. We had to reevaluate what our marriage, and what our family and what our lives would look like.
Anita Rao
That's David Peet, someone I met about a year ago on the Embodied radio show. He's the husband of Andrea Lytle Peet. Andrea is a triathlete, a person living with ALS, and the creator of the Team Drea Foundation. Dave and Andrea have a long and winding love story. That all started when they were in undergrad.
Andrea Lytle Peet
We met in Spanish class at Davidson College about 20 years ago. We have been married for 12 years.
Anita Rao
Andrea was diagnosed with ALS about five years into their marriage. At that point, Dave and Andrea were living in the DC area, and were starting to ask some big questions about their future. Like, when they feel ready to have children and whether they'd want to move back to North Carolina to raise them. The diagnosis put a lot of those life plan conversations on the backburner.
David Peet
It was very much — make it through the day, make it through the week — to kind of process your grief, and your sadness, at the same time of thinking through what the rest of your life will look like. For my part, it was a lot of thinking about the long-term, while in reality, trying to get through the short-term at the exact same time. I think both of us just kind of got into the mode of enjoying the time we had with each other on a day-to-day basis, knowing that it might not be much longer. But luckily here we are, seven years later and she is strong and vibrant and conquering her dreams.
Andrea Lytle Peet
ALS typically has a life expectancy of about two to five years. And it took me almost one to get diagnosed. And so when I left the doctor's office, I realized that I really just didn't have any more time to waste in this life. I realized, we didn't want to spend our remaining time arguing about the little things, like who was going to do the dishes or something.
Anita Rao
Coming to terms with Andrea's diagnosis has meant accepting that their future as a couple won't look the way they initially planned. For both of them, it's been important to make space for this grief without letting it stop them from enjoying their time together.
Andrea Lytle Peet
I remember that, at the end of the day, our hugs were a little tighter, and the 'I love yous' meant a lot more.
David Peet
We knew from the outset, from diagnosis, that grief, this profound grief, would be a part of our lives for a long time. And we would kind of continue to process it in some ways — still are processing it today. We allowed each other room to talk about that grief and talk about the emptiness that we felt and kind of just let it in. The only other people that we knew at the time of diagnosis that were going through what we were going through was each other. And we needed to be able to talk about what we felt like we were losing and how much that hurt to also be able to appreciate what we still have. We gave each other space to talk about what life was going to look like, and how that wasn't like what we had envisioned in our five year plans.
Anita Rao
They were the only people they knew going through this, which meant deciding how and when to disclose Andrea's diagnosis to others was complicated. Over the years, they've been able to build a supportive community around them, and have found that most people are able to empathize in some way with their situation — even, if at first, they aren't quite sure how to respond.
Andrea Lytle Peet
I put my story out there pretty early on my blog and on social media, and then I just felt so much love from my friends and family. Everyone wanted to help us and wanted to hold a space for whatever we wanted to talk about.
David Peet
I think, in my case, I just kind of went in with eyes open that they probably wouldn't understand what the disease was. There were a lot of the people who we would talk to, whether they were friends or family — they remember Andrea from when her speech wasn't slurred, or when she was sprinting on her race course, or riding a bike, or running a marathon — people want to ask what's wrong, but sometimes they don't want to be impolite or they don't want to make her feel uncomfortable or something. People in general, I think, are sensitive creatures and know how to empathize. And I don't think that's hard for people to misunderstand, just as I think I could empathize with folks who have had cancer or another condition that I don't have personal experience with.
Anita Rao
ALS is a progressive disease, which means Andrea will experience an increasing number of limitations over time. But intimacy and touch are still an important part of David and Andrea's relationship, in large part because they've allowed their definition of intimacy to evolve along with Andrea's limitations and needs.
Andrea Lytle Peet
We lean in to the physical touch that we have. We sit together on the couch instead of apart, and we hold hands and we just appreciate that we have this time, and that feels more intimate than like, just being out in the world. Like, we are intentional with each other.
David Peet
When she needs her toes to be stretched or her fingers to be stretched or something like that, it's not the first thing that probably most couples think of as far as intimacy, but it makes a big difference to her. It's a unique way that we can kind of take care of each other and something that certainly changed since diagnosis.
Andrea Lytle Peet
Definitely I give the best back scratches.
Anita Rao
That's good. That's a good skill. A good back rub scratch. There's really nothing better than that. As your physical needs change, Andrea, how have you kind of practiced communicating that? Do you prefer to be the one that says, like: Hey, this is what I need. This is how you can help me. Are there ways that you've all kind of figured out how to intuit what the other needs and does that change over time?
Andrea Lytle Peet
I think the biggest argument we have is about my driving. I think I'm a really good drive and I pass my driving test every year, but David doesn't want to be the one to take my keys and I appreciate that. I'm really trying to be honest with myself and start driving before I get too tired. I try not to drive in traffic or whatever, and I just need to be careful and honest.
David Peet
I'll back away from engaging in the fight that Andrea raised. I think we've always been fairly good communicators, and I think the fact that I'm around her all the time allows me to kind of generally intuit what she might need when particularly being sensitive to the fact that Andrea does not like over-helpers. If there is something that she can do, physically, she does not want me to bubble wrap her as she's walking with the walker, or out in the scooter in public or something like that, as much as that might be the safest and most careful possible option.
It's about understanding not only what she's saying she needs and letting her be the one to kind of lead, but also being comfortable with that middle ground that even if she's not asking for it there might be a fall or there might be a close call. And if there is, being there as quickly as possible to make sure that she's taken care of. So, in some ways, it's been about not acting on my immediate instinct to just try to keep her safe all the time. But being comfortable with that middle ground, that there might be bumps and bruises, but living and being comfortable with those bumps and bruises happening.
Anita Rao
Getting comfy with the middle ground, and letting your partner take the lead even when you're afraid — it's not easy. I introduced you to my partner John earlier on this show, and around the time that his dad's health started to decline again, he was actually diagnosed with some inner-ear issues that really disrupt his balance. It's meant that driving at night isn't always a safe idea, and I'm often at war with myself about how much to voice my fears and how much to trust that he's making safe decisions for his body.
This process of growing comfortable with change, while also centering independence, autonomy and joy in their time together has been the latest chapter in David and Andrea's love story. As of the release of this episode, this chapter is one they're still writing together. Andrea has continued to rack up marathons, while David cheers for her from the sidelines. As of April 2022, Andrea has completed 49 races, bringing her closer to a goal of completing one marathon in each of the 50 states.
Andrea and David are more than a decade deep into their relationship before her diagnosis. But not everyone who navigates romance and terminal illness does so in the context of long-term partnership.
Megan Yaeger
At 20, you're supposed to have your whole life ahead of you, not thinking about how your life's going to end.
Anita Rao
Meet Megan Yaeger. Megan is in her mid-20s and is a blogger, a contributing writer for TheMighty.com and an aspiring photographer. Megan was diagnosed with a connective tissue disease when she was 20. At that time, her doctor told her to enjoy the time she had left.
Megan Yaeger
Something inside me snapped that day. But it made me realize just how valuable life is. And gratefully, we found a treatment that made it so I could eat. We found that treatment by accident, and that treatment led to a diagnosis. But I promised myself since then to just consider every year after 20 a bonus year, and just make the best out of whatever time I have.
Anita Rao
So now, I mean things aren't as, I guess, imminently dire as you thought they were at that point, but you kind of acknowledge that you may not have as much time as you would want. You have a number of chronic and life threatening illnesses. I'm curious about, I guess, how you think about dating and romance, kind of given what you know about your body and health?
Megan Yaeger
So, to be completely honest, it has made me the world's biggest commita-phobic. Because most people, they're looking towards that future. Someone they're gonna be old grandparents with, sitting on a porch. And with my health, I can't really guarantee you that I'll be here, like, a year from now. So just balancing it, that all's kind of — well it's super difficult, because you don't want to be on a first date and be like: Well, I'm kind of a limited time offer, so enjoy me while you have me.
Anita Rao
Megan wrote an essay for TheMighty.com about her process of making a dating profile, and it made me laugh out loud. She writes: I decided to write the most honest thing I can on my dating profile. Limited time offer. Date with outgoing, six-one girl. Take her out before her rare life threatening autoimmune disease does. Clearly, she has a sense of humor — and a desire to be transparent. Figuring out the balance between both of those has meant her approach to disclosure has evolved over time.
Megan Yaeger
It's changed a little bit with the pandemic because I'm now on oxygen. So you can't exactly hide that you're sick when you have a cannula digging out of your nose. But I kind of low key tell them that I have some health issues, so I may not want to be the kind of girl you take hiking. And I don't really mention the part that I could end up in the emergency room if they took me hiking. And then it's — when I see potential in the person, because your illness is a big part of you, but it's not who you are. And you owe it to yourself and the person you're getting to know to let them actually get to know you before that roadblock is put in the way.
Anita Rao
I'd love to know about the best reaction that you have had. Have there been any potential first dates or second dates where things have gone really well or a reaction that you felt really supported by?
Megan Yaeger
I think the best would probably be — I actually had an online date, and the guy was going to take me country swing dancing, which probably would have led to my death. But I'm an extremely outgoing person, and I've always wanted to try it, so I'm like: Oh, maybe a couple of days unable to walk is gonna be worth it. Like, it'll be fine. He all of a sudden, out of nowhere, told me that he changed the whole date idea, and it was like this super accessible date. We went to dinner and a movie and just, like, sat at a park and talked and it was super fun.
And then all of a sudden, he said something about my health. I'm like: How do you know that? And he's like: I may have Facebook. You had cancer, and some other things that I didn't want you to get sick on the date. So, I changed it. I admired it so much that he still wanted to get to know me for me, even when he got like a context I didn't even give him about my health.
Anita Rao
One of Megan's biggest pet peeves is when people treat her like she's fragile just because her health is. Pity is a surefire way to ruin the mood. So when Megan gets a sense that a date has begun feeling sorry for her, she relies on that sense of humor as a way to redirect.
Megan Yaeger
So humor is probably like my number one coping mechanism. Like my lungs are really bad, and I always cough. Whenever a guy gives me a funny look on a date when I cough, I tell them it's my mating call. Or like, I'll be limping and they'll give me a sad look, it'd be like: Hey, that's my sexy limp. That's just for you.
Anita Rao
That's amazing. You're just like thinking on your feet — turn everything into a sexy way to move the conversation forward.
Megan Yaeger
Well, I've learned when it comes to your health, it's a lot harder to be pitied when you don't pity yourself. People catch on to that, like if you're a kind of a woe-is-me person, so are the people around you. But if you take it in stride, even if you have to fake it that day, like it makes a difference.
Anita Rao
There are plenty of Hollywood takes on navigating romance with a terminal illness. I recently watched The Fault in Our Stars on an airplane. And hoof, it took me out for a solid day. There's a lot of heaviness in there. But plenty of beauty, too. For Megan, there's a lot about these stories of other young folks that ring true to her own experience. Most importantly, that the search for companionship does indeed happen at the treatment center — even if the result is less dignified than what we see on screen.
Megan Yaeger
When you're at like appointments, or infusion centers, you kind of hunt for someone who's super hot, and in a chair, too. Like I had a surgery on my hips. So I was in a red walker — I could barely walk. They removed this tumor that was the size of a potato. But I heard the guy next to me was 6' 4" and I'm 6' 1". So I got out of my chair, and I hit my IV pole like a battering ram with my locker, and pretended I had to go use the bathroom so I could go ring check the guy next to me.
Anita Rao
And? What happened?
Megan Yaeger
He was super married. I see the ring on his finger, and he's talking about his wife, and I'm like: Okay, that was a waste. I could be like, watching The Office right now instead of sweating to death because I wanted to ring check a guy.
Anita Rao
Unlike David and Andrea, Megan isn't doing that emotional processing around her diagnosis with a romantic partner, at least not now. Her support system, which is made up of family and friends, comes with its own unique challenges. But it's been no less important for Megan to speak with others about what she's going through.
Megan Yaeger
That's a thing I've been kind of working on, because I got diagnosed with an immune deficiency in the middle of a pandemic. So all that stuff became a little more real, and it's like, it's really hard to bring it up. It's still kind of a joke. But I've had to come to the point where like, just for my own mental health I've had to talk with friends and family and kind of get them to acknowledge that truth along with me. Because no one wants to think about your 25-year-old friend or sister or daughter dying. But in my life, it's a really real reality, and it's something that's hard to process. And I've learned that it's something that you can't process by yourself, like you have to allow yourself that support system.
Anita Rao
You mentioned the experience of the pandemic. And obviously, it's been challenging in a lot of ways. Scary, I'm sure for you, given that you already have compromised immunity. Is there anything that you, I guess, have learned from this — all of this personal time or more alone time — that you want to take forward into dating? Anything that you've uncovered about yourself or about what you would want for your future?
Megan Yaeger
My illness has always been invisible. And for years, I lied about it. So I kind of used that lie like as a super crutch and a coping mechanism to hide stuff. And now my illness just kind of lives right under my nose, but I've realized it's made me more open about my health when it comes to like online dating or people in my life. And I've realized that even though my health makes me feel broken, and maybe like I wouldn't be a good partner for someone — that again, we all have broken pieces, but it's those broken pieces that can be turned into a mosaic and make something beautiful. Like the hard things in our life, they don't define us, but they do refine us and the things I've learned through my illness are things that would make me a great girlfriend, or wife, or mom.
Anita Rao
We checked back in with Megan to see how things were going since we spoke with her last June. She said, with humor-laden emojis, there's nothing new on the dating front at the moment. She's on an oral chemo that makes her extra immune-suppressed. So getting out there in the pandemic has not been easy, but as post-COVID life hopefully normalizes and her health stabilizes a bit, she hopes things will change. Megan, Andrea and David are all figuring out in real time what it means to build and foster connection in the face of terminal illness. And I'm going to leave you now with some of their advice for others who are in a similar situation.
Andrea Lytle Peet
I will say that your story isn't written. You're unique and stay ahead of the disease, but make plans to travel and to do what you love to do while you can. And to make those happy memories for the future and for your partner.
David Peet
You really are in it together and you need to do everything you possibly can to communicate both your struggles and your triumphs, so that you can continue to work together to live with the disease.
Megan Yaeger
It's important to know that you are enough and even with your health situation, you're not too much for someone. Everyone has baggage and just because yours is a bit more financially expensive, and a bit more obvious, it doesn't make you any less worthy of finding a companion.
Anita Rao
Embodied is a production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast and WUNC's other shows on demand, consider a contribution at wunc.org now. Incredible storytelling like you hear on Embodied is only possible because of listeners like you.
This episode was produced by Kaia Findlay and Audrey Smith. Jenni Lawson is our sound engineer and Quilla wrote our theme music. This show is supported by Weaver Street Market, a worker and consumer owned cooperative selling organic and local food at four Triangle locations in North Carolina. Now featuring online shopping with next day pick up, WeaverStreetMarket.coop.
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Until next time, I'm Anita Rao — taking on the taboo with you.