Preparing Loved Ones for Death with Lauren Fonseca

In today's episode, Jill McClennen talks with Lauren Fonseca about the death of her sister at a young age, as well as Jill and Lauren’s love for the state of NJ.

Lauren talks about the experience of having a sister live with and die from Cystic fibrosis. 

Cystic fibrosis (CF) is a genetic disorder that causes problems with breathing and digestion. CF affects about 35,000 people in the United States. (source https://www.cdc.gov/genomics/disease/cystic_fibrosis.htm)

When Lauren was 27 her sister died when she was 25.

Lauren shares with the listeners how her sister was a model for how to face death, she even was able to plan out her entire funeral from the outfit she would wear to the songs being sung and who would sing them.

In the end, her sister’s death led to her family being closer than they ever were.  

Join us for this moving conversation.  


Lauren Fonseca works in higher education as both a professional staff and an instructor. 

She was diagnosed with multiple sclerosis in 2007 (two years before her sister died) and blogs about disability and higher education (among other things) at proffonseca.com. 

Transcript

Welcome to Seeing Death Clearly, the conversations I have with my guests will challenge you to think about your beliefs about death, dying, and grief. I found the more that you think about your beliefs around these topics, the healthier relationship with death will become and the more you will live a better life.

I'm your host, Jill McClennen, a death doula and end of life coach. And in today's episode I'm talking with Lauren Fonseca,


Lauren and I actually know each other from my past life essentially. And I was trying to remember, did we make your wedding cake first and then you became customers, or were you customers of the bakery and then we made your wedding cake? I can't remember. 


Yeah, we were customers and then you made our cake. 

Oh, long time ago now. 

Yes. Yeah, so we've been married 10 years. 

So different lifetime, that's for sure. Yep. Definitely. Well, I'm so happy you're on the show today. I'm excited to talk to you. I know we talked a little bit earlier about the main story you wanna share with us.

But I wanna start off, can you just tell us a little bit about, um, how old you are, where you came from originally, maybe some of your spiritual beliefs growing up, just so the listeners can get some background info. Uh, sure. 

So I am 41 today, um, which is kind of funny. Happy birthday. I am, thank you. I grew up in Southern New Jersey.

I have lived here all of my life. I was raised in a Catholic household. Mother was raised Episcopalian, but later converted to Catholicism. Really for my dad, I was pretty active in my church for a while. I always thought about death as just a next part of being. But then as I got older and I started thinking about things in a different way, more of an agnostic or an atheist, I go back and forth between the two.

Now I think about death in, in a very similar way. It's sort of this idea that whatever is in the universe has always been here and always will be. So I'll just be in a different form, right? Like you die and then you break down and you've become food for something else or whatever. So it's, everything is here and always has been, and always will be just in a different form.

Then I find that pretty comforting actually, because I didn't mind not being alive before I was born, so I'm probably not gonna mind not being alive after I'm dead. 

I've thought about that before too, how there are some, you know, spiritual beliefs that say maybe you know that we were in bodies before and then we died, and then we came here.

But I don't remember it anyway, and I'm kind of glad I don't remember it, if that is the truth. Imagine how overwhelming that would be if we maybe did have five or six lives before this and we remembered all of the stuff that happened. That would be a whole lot to have to like to process in my brain. I can barely process what I've gone through in this life. Let's just not add to that.

Sometimes people say, oh, I wanna do past life regressions, you know, I wanna know all this. No, I don't. I, I really don't want to know cuz there is enough in this lifetime that I'm having a hard enough time working through and putting it into different places so that it's not coming out and being projected onto the people around me.

I don't need to know every bad thing that's ever happened to me. It would be kind of nice maybe to know some of the good stuff, but I don't think you could have good without the.  ever in any lifetime. No, you, it doesn't. You have to have the opposite for it to even be, and I think there's a lot more good than bad, that's why we noticed the bad so much. 

That's actually a nice way of looking at it because I've tried to figure that out in my head. Why sometimes humans in general, we seem to focus so much on the negative experiences in our lives and I know I've done it, for example, with the bakery. I would get a bunch of really great compliments about the bakery and but I'd get one negative thing and it would stick in my head and I would think about it and I'd think about it and it would just, why? Why do we do that? I don't know. It's very frustrating. We often waste so much time thinking about negative things and stressing about negative things when we could really just be experiencing the beautiful parts of life and you still have to experience the negative, but I don't think we have to focus on the negative, I think we could put more effort in focusing on the positive, and that's really something that facing my fears around death and dying has done for me.

It's made me more grateful for the time that I have here, and more grateful for all of the experiences that I have. I'm more patient with my family, so you know, if one of my kids or my husband's getting on my nerves, part of me really is able to meet that situation a little bit differently because. I know that there are people whose children are not here and their husbands are not here, and one day that could be me.

There's really no way of knowing, and so even if my daughter's screaming and yelling at me, which she tends to do, sometimes I try to embrace it a little bit differently and it's not even like a conscious effort anymore. I think just working through some of my stuff has allowed that to naturally be a byproduct.

I do focus more, I think, on the positive than I used to in the past. 

You can't really beat that. Yeah. And you know, your daughter's gonna grow up and probably stop yelling at you. Maybe not.  And that's okay too. Yep. 

So why don't you tell me about maybe the first experience that you had with death or the dying process when, you know, whenever that was, whether you were a child or an adult?

When I was young, like probably. Maybe 10 or 12, somewhere in there. My cousin, uh, died. She was, uh, probably 10 years older than me around, and she had cystic fibrosis. My sister also has cystic fibrosis. Seeing a person that has the same condition that my sister had die at 21, or 22 was really one of those moments that really made me realize that this was a real possibility, um, rather than an abstract idea.

It was a weird thing to process. I don't think I went to the funeral. I don't really remember that at all if I did just like, okay, so this is what can happen. I tucked it somewhere and didn't really think about it for much after that. And then my grandfather died.  I was 16, but my grandfather was old, so it was like, you know, all right, you're in your eighties. That's pretty good. But you know, my cousin at 22 was like, Ooh, young people die. And that's weird, you know? I tucked it away and didn't really think too much about it really until my sister was dying. 

My sister was 25 when she died, and that was actually borrowed time for her and I was 27, so we, we were close in age and she was such a, a model for how to face death.

I was, at the time, a little bit estranged from my mother. We talked, but I was angry with her for a lot of reasons. I was dating somebody that she did not like and made that very clear to me and to him, and that bothered me. Turned out she was right. But that's another story, that's a different podcast. Um,  turned out she was right, but, um, so my sister made a decision at 25 that she was tired and was ready to be done.

She basically made her own funeral arrangements at 25, like it was really a fascinating thing to be a part of. She, basically held court 24 7 at my parent's house. People were coming and going all the time, and she just needed to tell people what they needed to hear from her, and she told. One that I have to sing at her funeral.

Here's what I want you to sing, and here's who I want you to sing with. Cool. Okay, sure. I'll, I'll handle that. Which I did, so that was good. And then she told me, you know, no matter what, I'm gonna be with you all the time and you have to take care of our mother. . I'm like, you gotta be fucking kidding me.

You know, excuse me, it's fine. I'm fine with that. You know? She's like when I go, she's not gonna have anybody and she's gonna need you. I'm like, I can't promise anything. And she's like, except you will. So that's just how it's gonna be. She also said something to the effect that I deserve someone who treated me the way that my dad treated my mother and that had to sit was made for a little while. 

It was just this really beautiful thing to watch her tithe everything up and she wanted to make sure that she died in the hospital so my parents wouldn't have to walk by her bedroom and see that that's where she died. Like these are all the things she was thinking about.

This was late February and we took her back to the hospital. . I pretty much just ditched work. I don't even know if I told anybody really. I'm like, my sister's dying. I'm leaving. I'm going on leave. Like I'm just gonna take from family leave and that's that. You'll get the paperwork. When you get the paperwork.

I went up to, she was a children's hospital, Philadelphia, and so I went up there. I spent the night and I was with her when she died. My parents were there, I was there. These two nurses had been her nurses since they became nurses kind of thing. And I'm still friendly with one of them.

My dad told her it was okay. You know, all of that stuff. And it's funny cuz the last thing that she said to my father was, you have to talk to Michelle about my foundation. And he said I've got it. She said, okay. So, we actually started a foundation in her memory for kids with CF and their families.

For those who don't know CF can put your kid in the hospital more than they're not, it's gotten better. The treatments have gotten better, but my sister was in the hospital two weeks at a time fairly often, you get to know the people at the hospital and you get to see the struggles that other people have.

And when she was young, it was six patients to a room, you know, now it's one. And I, and I think that's awful. When you're a kid, you know, you need. This was before HIPAA and before Mesa and all of that kind of stuff. So it was six people in a room. It didn't matter what gender you were, it was, you were just in there and then you could talk to other kids that had CF too and it's like, oh, I had to get a porta cath in. Don't worry about it. It's actually really easy and it's way better than a long line. It's like, oh, okay. You know, you have to get this particular feeding tube. Don't worry about it. This is what it's gonna look like and here's how I deal with all the gross. And so it's these children helping each other get through these things that they're all going through at the same time.

And I really, I understand why they can't have six patients in a room, but I feel bad for the kids who are up there isolated from other kids that are going through the same thing. So my sister wanted to really make sure that these kids had access to each other in some way and make sure that the parents were taken care of.

We paid for gas gift cards, we paid for hotel rooms. We paid somebody's electric bill. We covered someone's funeral expenses. You know, all of that kind of stuff. It was, you know, it was, that was so important to her that kept her memory alive and it was a really good way to honor her and keep her with us in that, in that way.

So we were all with her when she died and we all knew exactly what she wanted. That was brilliant. You know, like we all knew that she wanted, she wanted to wear this sweater with these pants. I wanna wear my pearl earrings. I want this. And then, you know, like all of this, she had everything already planned out.

She wanted people to eulogize her a lot. She's like, I just want anyone who wants to talk to come up. I want you to have three viewings because people work. So you have one in the day, and then you have one in the evening, and then you have one in the morning before, like the morning, right before the funeral.

She wanted a luncheon afterward. She's like, y'all gotta get together. You gotta feed these people. Like it was just, she had everything done. Who got what of her stuff and who, it was just, she was 25 and she wanted to make everything easy on us. As far as that goes. It was so perfect because we knew she was ready and not afraid.

She was very spiritual, very religious. She met with the priest who was going to do her funeral. He had said during the mass that she told him that she was not angry at God and that he gave her these experiences so that she could help other people. I'm like, holy shit, girl.

Like, what the hell? How are you so wise? How are you so connected in that way? And it was just so lovely. I mean, this was 2009, so it's been a while. I still miss her every day, but we talk about how funny she was and the silly things that we all did as a family. I'm still processing how mad I am that she didn't meet my husband cuz he and I got together in September of the year that she died.

He missed her by a couple of months and that pisses me off. I just tell all the stories and he feels like he knows her. But I just think she would be here all the time. Cause we have this jetted tub and she'd like to take hot baths and she would just be here all the time. And my memory of her death is actually kind of positive in a strange way.

I spent a month out of work to just sort of process what was going on and really realized that the, like my new reality. There are all kinds of other stuff going on at the same time, so that was fun. This, I'm gonna, I guess this counts too, cuz I had an unplanned pregnancy that I elected to terminate a couple of weeks before my sister died.

Like there were a lot of life-altering experiences happening in a very short amount of time. I know when we talked a little bit before that, this experience actually brought my family closer shortly after my sister died and I went back to work. The boyfriend that my mom hated, whom I lived with.

Okay, so let's just piece this out. I lived with him. He broke up with me by changing his relationship status on Facebook because that's what adults do. And I didn't know, other people knew before I knew, cuz you know, I wasn't checking Facebook in 2009 very regularly. 

I was driving to work. I called him, and I'm like what the, what the fuck is this? What is this? And he's like, you left me to grieve the loss of our child alone, and duh, duh, duh. I'm like, okay, let's walk that back a little bit cuz that was a decision you and I made together and my freaking sister just died.

And you have a child elsewhere that you have no relationship with. So like, don't even, so I hung up with him. I called my mother and just lost it. I'm like, this is what happened. And this was when I finally told her, this is April. So all this stuff was January, February, and this is April. And then I finally told her about the pregnancy and the abortion.

Not once. Not once did she say, I told you so even now, not once. She came in like a white knight on a horse. Ready to do whatever she had to do to get me out of there. I moved back in with my parents. I moved into my sister's room. I, I don't, I don't e I couldn't even tell you how we got closer. I think it was this sudden ability to recognize the bad relationship that I was in, and then I could finally acknowledge it and tell my mother everything.

Never did she say I told you so, or you're an idiot. Or, why did you even do this? Nothing. It was. I'm going to kill him and I'm like, please don't do that, mom. 

Sounds like a Jersey mom. 

Yeah, definitely a jersey mom with an Eastern European father who actually did kill people in a war. So there was that, but there was a lot of sassiness on her side as a family and she brought me back in and, and that was that.

Now my mom and I are close and we talk about everything. I kind of said to wherever my sister is, I'm like how did you know this was gonna happen? How did you know that we were gonna be okay? And then, you know, we did all this fundraising for her foundation and talks about all of her silliness and her love for people, and her constant concern for others and people who never knew her loved her.

That's, that's how you achieve mortality. I think. I miss her. I talk to her all the. She doesn't answer, but you know, I feel I know what she would say kind of thing. She always would say, whenever I would complain about someone's behavior, she would always say to me, you don't know what their life is like.

You don't know what kind of day they're having. You need to give people some grace. I say that to myself all the time when I start talking about like, oh my God, she's such a bitch, blah, blah, blah. It's like, hang on. I don't know what's going on in that person's life. Why would I, I mean, I can be a bitch too, and that's usually because I've got something going on.

I end up teaching my students. So, I teach college freshmen and I talk to them about that fallacy. It's actually, there's actually a name for it. It's the fundamental attribution error. You attribute character based on behavior, even though you know for yourself that your character doesn't have anything to do with your behavior, it has to do with the situation.

There's a chapter in a book that talks all about how we all do it. You know, like calling someone cuts you off when you're driving and you call them an asshole, it's like they're probably not an asshole. They probably have to pee cuz you've cut people off when you need to get home cuz you have to pee. So now I'm just like, okay, where they're going to is more important than where I'm going to and I'm just gonna let them go. 

That's a great way to view that type of situation. I've tried to do that myself. It's not easy, especially when you are having a bad day too. So part of you is like, yo, fuck you, my day sucks too and I'm not cutting people off. But maybe I, I am cutting people off and I'm just not even paying attention cuz my brain's somewhere else.

As far as like the grieving process goes. Um, I still have moments when I get pissed off and I let myself get pissed off, then it's over.

There are a lot of things my mother and I are going through in separate ways that we really wish she was here to give us some advice, but also we are really glad she wasn't here during Covid because she would've lost her freaking mind. The house would've been covered in plastic and Lysol. It's just like, that's just who she was. 

I have MS and I use a wheelchair now. And you know, I used to be a competitive Irish step dancer and now I'm using a wheelchair. My mother was in kidney failure and now has a kidney transplant. You know, and the two of us are just trying to kind of keep each other going.

It took this tragedy for me to grow up a little forgive whatever I needed to forgive, and I think I'm a better person now than I was. At least I hope I am. I might not be, but when I look at Facebook memories, I'm like, yeah, oh, that was kind of a bitchy thing to say, but I don't see that anymore.

My internet is forever. So there's a record of all of your, uh, not kind comments. 

I sometimes cringe. When I look back at sometimes how judgmental I was and how I now feel much more compassion for other humans that even if we don't agree, I know that we all just come from our own experiences, and our pain and our suffering really shapes how we view the world.

And also we need all kinds of people in the world. We need all kinds of different beliefs. That's just part of what makes life interesting. If we all thought the same about everything, I would be really bored. Yes, I try to remind myself that even when I'm really disagreeing with somebody, there are things that I can always learn, cuz I love to learn new things.

There would be nothing to learn if we all thought the same thing. So, I tried, but there are definitely times when I look back at, you know, especially going back to like MySpace days, like way back, Ooh, ooh, oh, oh, Jill, Jill, Jill. But that's part of life is growing and learning, and to me, when I think of your sister dying so young, there's a part of me that thinks like, well, what would she have been able to do today if she would've still been here? But also would she have been the same person that she was if she didn't have cystic fibrosis? Would she have had that? I don't think so. 

No, no she wouldn't, she knew that in her view, God gave me this challenge so that I can help other people, so that I can understand other people.  I can learn how to see the world in a different way than if I weren't sick, you know? Cause when she was a kid she was kind of mean. For whatever reason, I was never popular or cool right, but she was, and that kind of pissed me off. I'm like, why is she all cool and cute and everything? And I'm like, awkward and, well, cuz, cuz you're awkward and that's okay.

I was at one point, I think she was in fifth grade, and she had to do a course of really, really high steroids. So she had like the moon face. She was really chunky and broken out and all that kind of stuff. And the elementary school that we went to was pretty small. There were only maybe 90 kids in the fifth grade.

So the whole fifth-grade class had a meeting and said, you know, she's coming back. You know, she had to take some medicine that's gonna make her look puffy just so you know. Don't be assholes about it. And everyone was cool except for this one girl. I was in middle school. I was in seventh grade and I was five, eight, and 150 pounds.

And I'm like, I'm gonna kill her. Where does she live? I'm gonna kill her. My sister's like, don't kill her, please. I'm like, I'm gonna get on my bike and I'm gonna ride to her house and we're gonna have a chat. You see? But you know, it's like, that's family, right? I can make fun of her and give her a hard time but watch out if you give her a hard time. Cuz I'm coming at you. Coming at you hard. Like I was just livid. Livid. And I wished I was still in the same school. Cause I just, there would've been some action on the playground kind of thing.  

Sounds like Jersey again. Yeah. Again, you know, we don't, we don't screw around.

We do live up to our stereotype in a lot of ways. There are a lot of things that, stereotypes that are based on truths. 

But I love New Jersey and I love Jersey girls, and I actually was always very grateful as I moved around the country a little bit.

I was grateful that I came from Jersey because I honestly wasn't afraid of anything. I really wasn't. I was kind of like, all right, so what are you gonna do to me that hasn't already been done? It will be fine. And I kind of moved through my life that way. 

There's definitely a specific attitude that comes outta here that I like, but also New Jersey is just kind of a cool spot, very close to three major metropolitan areas. We have the ocean, we have the best beaches. Sorry. Yes, we do, we have the best beaches. 

I agree. I actually love New Jersey and I used to get really annoyed when people would talk trash about Jersey. And especially, you know, when I would move around and people would be like, why is it called the Garden State? I'm like, you've obviously never seen South Jersey. We have lots of farmland, lots and lots of it. But then now I'm also like, that's fine. You could not like our state and you could stay out of it.

You could leave the beaches to us. I'm fine with that. 

Where I live, there was one year. Where we were renamed Mojito because we were the mint capital of the world or some shit, we grow a lot of mint and blueberries and cranberries and tomatoes. Yeah, anytime you do any Ocean Spray, those are ours.

And dandy lions. We grow edible dandelions. Right. Vineland, I think is like the dandelion capital of the world. Yep. 

There's a winery right down the road that makes dandelion wine. It definitely tastes like, it tastes like grass, but in like a good way if that makes any sense. It's like, oh, I'm drinking a salad.

When they open up their dandelion wine, they always do a flight tasting of different vintages and how different they are based on like just the aging and also what was happening that season and how the dandelions, you know, grew and everything. It's, it's fascinating to do something like that, I try to do it as often as possible.

North Jersey is not Jersey. That's something separate. That's like a New York suburb. 

I would agree with that. 

So anyone who's listening, come at me. See what happens. Yeah, nothing's gonna happen.  I'll roll over your feet in my wheelchair. How's that? 

Well, I really appreciate you sharing that story with us. That was a beautiful story. I really appreciate that your sister was so willing to face the reality and prepare for it, and prepare the people around her for it. That's not easy to do. It definitely is doable for all of us, no matter whether we have a terminal illness or we're going along life healthy.

You know, I say healthy in quotes because you know, I'd say all of us, we don't know if there's something going on inside of us. We could all die at any point, and the more that we prepare ourselves and prepare for the after-effects, the better it's gonna be for everyone around us. They're not gonna have to scramble and have to deal with a bunch of stuff. They can deal with their own grief and process their own emotions, not worry about do you want to be buried or cremated? 

Right. And then the family fights about it and it's just like, you know what? No, don't just don't. You know, death is one of the few experiences that we will all have.

Yes. Cuz if you were created you will die at some point. It doesn't matter if that's when you are in the womb or whether you are 99 years old. There has to be an end to that life. 

One shot. Do the stuff, do the stuff, be happy, but be okay with not being happy. There's also that whole toxic positivity thing.

It's like, no, no, it's okay. Your life is allowed to suck, but what are you gonna do about it? That's the thing. What are you going to do about it? We're all gonna have experiences in life that are not going to be great, but what are you going to do? Are you going to sit around and think about it and stress about it and just push it off onto everybody else around you?

Or are you going to take it and learn from it and you know, maybe even do some good in the world from your negative experiences? Like it sounds like your sister did. 

Actually, what is the name of her foundation? 

Oh, it was the Casey Coyle Memorial Fund. We're no longer fundraising for it, but there is still money in the account to do the things, but, the person who is doing a lot of the managing has moved to a different hospital.

Likely we will spend the money and then go from there. Cuz my family just got a little, we all got a little sick. 

Yeah, you have a lot going on. 

We paused, but it's still, you can still donate to it through the Children's Hospital Philadelphia Foundation. It's still listed there if you wanted.

I'm also gonna plug my blog, please. 

Yeah, I was gonna ask if there's anything that you want the listeners to be able to follow or whatever else. So yeah, tell us about your blog. 

Okay, so it's proffonseca.com. I've been teaching at the college level for a while and I just kind of gave myself that title.

I blog a lot about accessibility and disability in higher ed and that kind of stuff. I'm trying to ramp it back up, so this might be the motivator to do that. 

I'll put a link in the show notes too so that people can find it because yes, I think that's a great topic that people don't often think about.

Again, when you're able-bodied, you don't think about these things. It's important that we all start thinking about it at least a little bit. Give it some consideration that not everybody can easily walk up the steps and walk in a door and get to where they need to be. 

Yeah. It's a, it's a good time. I do make a lot of jokes about it. I do have some dark humor. 

Well, thank you so much, Lauren, for being with us today. I really appreciate the conversation and I appreciate getting to know that story a little bit cause I didn't know that about your sister, that happened before we met. It's nice to know a little bit about it and I do appreciate you sharing and just thank you, thank you for being here with us. 

Thank you for the opportunity, and the invitation. 

You’re very welcome. And again, I'll put the link in the show notes to the blog and to the foundation if anybody is interested.

Awesome. Thank you.