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In this podcast episode, Zander Sprague engages in a conversation with Allie Shoemaker, formerly Sobiech, the older sister of Zach Sobiech, the inspirational figure behind the Disney movie “Clouds.” Allie reflects on her experience watching the movie, discussing its accuracy and emotional impact. The conversation delves into Zach’s legacy, particularly the Zach Sobiech Osteosarcoma Fund, and how it has contributed to osteosarcoma research. They also explore sibling grief, coping mechanisms, and the importance of finding purpose and making meaning out of loss.

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Making Meaning Out Of Loss With Ali Shoemaker, Part 2

My family, we still sit around, and we tell stories, not just good stories. I always say everyone’s human and we tend to canonize the dead. The fact of the matter is there were probably many times when Zach was a jerk and there were times when Lucy was a jerk and not nice to me. There were stories that I told where I thought my mom didn’t know something that Lucy and I had done.  

Your mom and my mom seemed to be similar and my mom knew. The thing that she says to me all the time is, “A mother knows.” I’ve been able to travel around the world and if I’m having a bad day or whatever and I happen to call my mom and it’s not going well, but I’m trying to put on the, “Everything’s okay,” she’ll let me slide with that. However, when I got back, she said, “When you called me from Norway, I knew you weren’t happy.”

I’m like, “How did you know?” She goes, “I just know.” When I was a teenager, I was a huggy person. I’d hug my mom all the time, but there was what she called the money hug, which is when I wanted $5 or $10 or whatever. I never know how she knew. She goes, “Is this a money hug?” I’m like, “No.” I’d be all indignant that it wasn’t a money hug, “If you can give me $5, that would be great.” As a young adult, “How did you know the difference?” It’s the magic of motherhood. In the same way, you’re a mom. You have boys. You know something’s up.

Telling Stories

They might hide something from you, but you know. My mom later tells me, “There’s something up.” I think telling the stories is so important because that’s how we keep them alive in our hearts. I don’t have a major motion picture that I can watch again and again to keep Lucy alive. You can watch that. Maybe someday I’ll have a major motion picture.

Telling stories is so important because that’s how we keep our loved ones alive in our hearts.

 

First of all, let me say that I feel so privileged and honored to be able to have a movie. Some families don’t get that. First of all, it was condensed into the book and then that’s further condensed. The movie does a really good job portraying his personality and all those things, but my story is a total undercurrent. My story with Zach isn’t there.

 

EPIC Begins With 1 Step Forward | Ali Shoemaker | Finding Meaning From Loss

 

That’s what I was going to say. It’s like in the movie, as you said, you’re eating at the table and the focus in terms of the sibling is more with Zach and your younger sister.

An older brotherly role and her purpose in the movie, I think, was to show that nurturing side of him. Part of a movie is we become props to the main character who is Zach like, “What about Zach?” That’s the thing. I’ve only watched it once, but it wasn’t as hard for me to watch as I thought because I was like, “This isn’t my story with him anyway. This is his story with Sammy and Amy and a little bit of Grace.”

I’m just poking fun at you.

Interesting point, though, because that’s something I’ve actually processed a lot and it’s hard because, on the one hand, I feel super grateful that everybody wants to keep Zach’s memory alive and you don’t feel this burden talking about our dead brother again. Everybody wants to do that with you and so that’s a huge privilege, a perk of having that be my thing.

“People want to talk about our dead sibling.” Of course, they do. Why wouldn’t they?

When you bring it up and it’s, “Okay, let’s talk about how nice it is outside.”

It is awkward, but I think one of the things that I experienced was we, as Americans, we have no ritual around death other than the fact that if Zach died and it’s like you had the most communicable disease in the world. “I always had that. Don’t get close. It might rub off.” I have the same thing. I went back to work. I wasn’t really doing a lot of work, but I’d certainly be sitting in my apartment all by myself feeling horrible and people would come up. When Lucy was killed, at the time, my dad was a sitting District Court Judge in Massachusetts. Judge’s daughter gets killed and the man who killed my sister was a convicted felon who had spent 8 of the prior 10 years in Joliet prison. He had a four-page rap sheet. It was like a convict kills judge’s daughter and all of this. It was all over the Chicago press and the Boston press.

Were you older than her? How old were you?

I was 28. She was 30.

You were at the younger brother.

I have a younger sister who was 25 at the time. Everyone knew. I went back to work and people came up and they’d stop, then they’d move on. I put a sign up outside that said, “It’s okay to talk to me.” The other thing I wanted to share with you and please feel free to use this, Alli, and you can tell your brother and sister which is, “There is no miracle sentence that will make it better for me and I don’t have a miracle sentence that will make it better for you, but that’s okay.”

There is no miracle sentence that will make it better for me, and I don’t have a miracle sentence that will make it better for you, but that’s okay.

 

There’s No Right Or Wrong Thing To Say

That actually brings something, if you don’t mind me saying. At CCRF, the Children’s Cancer Research Fund, we did some work around grief. What to say to somebody and what not to say to somebody who’s experiencing grief. The older I get, I’m like, there is really no right or wrong thing to say. There are really wrong things to say, but I think it is so dependent on the person. We can recognize when people are actually trying and there is an extension of forgiveness if they totally screw it up that I’ve learned to give because I’m like, “At least they showed up for me.”

Until Lucy was killed, I always thought that a receiving line after a funeral was just an inhumane, sadistic thing because I was standing in line, “What the heck am I going to say to these people? I’m only going to make it worse because I’m here acknowledging their loss.” I did learn that when I was the one standing there and people were coming through that the two and a half hours that I was standing there, it was very cathartic for not only me but my whole family.

All of these people who knew and loved Lucy wanted to come express their loss. It’s a two-sided thing for both sides to have their loss or grief acknowledged. That’s why we do it and I think, coming back to acknowledgment, grief acknowledgments are important and when it doesn’t happen, as it sounds like you’ve experienced, I know I have, it’s very lonely.

It’s hard when you don’t feel that you have a community that gets you. I’ll shamelessly pimp The Compassionate Friends as a great organization and The Sibling Group is so strong. It has great leadership that is there to help people, give a voice, and give a place wherever you are on your journey.

I’m obviously down the road. I’m seasoned and wisened, but I have a passion for helping other people because I understand what it’s like. In the same way that if you were put in contact with someone whose brother or sister had osteosarcoma, there’s probably so much that you could tell them that helps them on their journey and maybe makes their journey just a little easier.

Change In Family Structure

It’s not an easy journey. It’s not something I would wish on anyone. I think about what Lucy would be doing all the time. What would Lucy think of this? She’s not here to share the birth of my daughters or whatever. I can tell you the year that I turned 30, I was terrified the whole year. I became the oldest child.

My parents never said, “You’re the oldest child. You have to do this.” I talk about it all the time. I talk about it in my new book. I’m not trying to put my new book too much here, but I talked about the change in family structure and the expectations of someone who is the oldest, what the expectation is.

I actually have never thought of that before. That’s super interesting and that makes me really think about how that must be for Grace.

Your sibling’s position didn’t change. It didn’t really change because she’s always been the youngest. Not to take anything away from Grace, but I went from being the middle child to now, I’m technically the oldest child. Twenty-three years later, I still think of myself as a middle child, even though Lucy obviously hasn’t been around for almost a quarter century. My parents never said, “Now it’s up to you,” but I knew that there were a whole lot of firsts that I was going to have to do that Lucy never did.

Lucy had quite a few stupid maneuvers that I sat back, looked at and go, “All right, I’m not going to do it that way.” There’s that. There’s how the relationship changes between the siblings. In the movie, it appears that Zach was very close to Grace. How do you think your relationship with Grace and Sam changed?

I think because there was like two pairs. It was always Sam and I and Grace and Zach. Obviously, there was a hole left, but I’m grateful for the experience because I’m a lot closer to Grace now, just as sisters. Actually, the three of us are pretty close. That whole gap that was there was resolved pretty quickly and it’s because we not only experienced Zach’s death together, but also everything that happened afterward. We had very similar feelings about things like the documentary and the movie and all that stuff that were sometimes different from my parents. I think sharing that experience together has made us much closer than I probably would have been with Grace had Zach been alive.

 

We not only experience death together but also everything that happen afterward.

There’s no doubt because pure age-wise, what you’re going through is so far removed from what Grace was going through at fourteen.

Yes, because she was just entering teenagehood hood and I was trying to figure out the next chapter of my life in college. I was 23. I think he was diagnosed when I was nineteen and it was a strange thing because Zach was facing essentially a death sentence. Your life’s going to end when you’re a teenager and I wasn’t, so you have all these things you need to do to move on with your life. Youso want to stay put with your brother and there’s that tension and then I think Grace was also at a pivotal chapter of transition too. Obviously, they’re both very different. I think now that she’s older, too, we’re able to process things more similarly than we may have been when she was fourteen.

We all change as we get older and through adolescence, our perspective changed. I find that as an adult, my relationship with Cynthia, my younger sister, it was always really good. She was like the little brother I never had. Growing up, we played games and stuff together, but certainly, it’s evolved, it matured and stuff somewhat. She still likes to scare the bejesus out of me, but she’s exceptionally good and crafty at it.

I’m telling you, Alli, one of the things she did one time, my parents had a house in Boston. In order to use the shower, I had to go through her bedroom. It was like early in the morning. I go in. I’m trying to be all quiet and I look and then when I’m coming out of the bathroom, I’m trying to open the door.

It’s an old house so the door sticks with the humidity. I get it open and I look over. It looks like she’s still in bed. I’m quietly trying to get out of her room. Right next to the doorway is a closet, and she pops out of it. It scared me so bad, Alli. I fell on the floor. What she did was take her pillow and put it on the pillow so it looked like she was in bed. I’m telling you. She’s crafty.

I don’t know if I’d be that motivated.

She’s your quintessential younger sister. I’m sure that Grace just came out knowing how to bother the bejesus out of you.

That is very true.

She probably still can.

Every once in a while.

It is interesting and certainly, what you’ve gone through and the publicness of Zach’s death, I have to imagine at times, it makes it hard because it puts all of you, your whole family, on display.

That’s very true. It’s weird that I think about it because of the option to be on display or not. What’s interesting is that my siblings and I decided to take the background course. It was our decision partially, but also, being siblings in general put us in the background. The thing to think about is how being on display changes things.

You Have A Choice

I put myself on display because I’m out there talking about Lucy every day. One of the things I want to tell you is that every day, you have a choice whether you want to talk about Zach or not. I told my friends at the beginning, “Just because I didn’t want to talk about it today doesn’t mean I don’t ever want to talk about it. It just means today is not a good day and I’m choosing not to do it.” There’s so much power in choice, Alli. I am defining my loss. It is not defining me.

That definition can change every day, but it’s still in your control.

If you go, “I’m choosing today is not a good day so I’m going to choose to climb into bed and pull the covers up over my head,” okay, you’ve made that choice.

I’ll be honest. The whole documentary process was hard for me. I was mad all the time, and I felt like any time there was a camera in my house, it was taking away from the time with my brother, who I knew was going to be up pretty soon. I had decided to stay home from a study abroad trip because I wanted that time with him and to stop at my mom because she was doing all these exciting things with Zach, and I was like, “That’s supposed to be my time.” I don’t care to remember because I’m just thinking about that whole process, but it was hard.

It’s about the choice and I can hear from you, it sounds like you’re like, “I had made a choice to spend time with Zach and I didn’t. There are other people who were interfering with this time that I had.”

Yes. Vying for that time is very limited and very obviously limited, though. Thank you for bringing that back. I get into that chapter and I just think about how it was and it was really intense that I forget everything else.

I get that. It is about trying to encourage people to define your loss because it’s a loss.

I remember what you were saying about how you tell your friends that some days you don’t want to talk about it, and some days you do. If I don’t want to talk about it one day, It doesn’t mean I don’t want to talk about it on another.

It’s Okay To Talk About Death

In America, we’re horrible with death. We literally are like ostriches. “Just don’t even talk about it.”

I actually ended up acknowledging it way after the fact. Someone was like, “I’m just not good with death.” I think part of it is to help people learn how to talk about it. It’s okay. It’s healthy. It’s reality. A big old reality.

 

Death is a big old reality. People should learn how to talk about it because it’s okay. It’s healthy.

As indestructible as you and I are, we are both going to die at some point.

I always talk about and think about this. I’m grateful that if my brother was to die at all, it was when I was as young as I was because it prioritized a lot of things for me really early on.  I don’t have to do that now. I don’t have to struggle through that. It hurts really badly at the moment, but I have so much more meaning in my life now because of that I wouldn’t have had, I can pretty much say 100%, without that experience. I think people get a little freaked out when I bring that up because I don’t want it to sound like I’m super grateful that he’s dead, but I can glean the goodness from it.

It’s not that you’re glad that he’s dead, but what you’re looking at, Alli, and I think the same way I am, which is this isn’t defining who I am as a person. This thing happened to me. I’m acknowledging it. I am looking for the lessons and the knowledge that I’ve gained from it and I’m moving on. I can say Zach’s name. I can acknowledge him. I can talk about him. I could talk about the good and I can talk about the bad. I can talk about the good and the bad of Lucy. Frankly, when I talk about Lucy, I keep her alive in my heart, in my life, and in the universe. You and your family doing the same thing for Zach. How awesome is it to say, “Yes, Zach and Lucy died, but they are still alive in our lives, and we want to share that with other people?” That’s awesome.

What a testament to love, too, I think, because I think this isn’t the movie Interstellar. It’s like the one thing that still exists even if the other person is gone completely and how mind-boggling and nuts that is. Zach made me a very existential person. He made me so existential. It’s such a beautiful thing to have now, and to be able to share with other people. It’s weird that humans can still love people even when they’re dead. What does that mean? How does that define who we are and whatnot? It’s something that I feel really privileged to have experienced and share with others.

I think you’re doing great, Alli. Believe it or not, you and I’ve been talking for an hour.

I can talk to you for another hour.

You never know. Maybe there’s the part two. I want to thank you so much for coming on. Remember, epic choices lead to epic lives. All right. Thank you so much.

Of course. Thank you.

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