Living WITH Fear Not IN Fear With Susan Angel Miller

Susan Angel Miller's daughter died suddenly after being diagnosed with a rare form of childhood brain cancer. Not four years later, Susan was diagnosed with a brain tumor and underwent surgery—and the parallels to her daughter's experience are incredible. Today, we're talking about how grief is awkward, why Susan never stopped speaking her daughter's name, and how the miracle of organ donation introduced them to a woman named Trish.

Transcript

Your book permission to thrive I took in in about 48 hours because your story this memoir of having permission to thrive and permission to do so many other things in the aftermath of loss was just so It was like full of the experience like every single page I turned was full of the experience of grief whether it was The these racing thoughts and anxiety of oh now that this has happened Will it happen to me? But also this do I have permission to feel joy? It was just this very like wrestling book Literally laying out it's like you took your brain out onto a table and let us look at it as you were Experiencing grief and I think that's just such a cool Insider's perspective into what loss looks like in the moment because I think so many Books on grief are written You know 10 15 20 years after the fact and something about the perspective has softened or the memories aren't quite all there and we got these teeny tiny little personal snippets of your days and your flashbacks and Even like smells and sites that would come back and I just think it's so cool So I am just delighted to have you on the show today Well, Thank you for the opportunity. I really appreciate it. And this is one of the you mentioned how You know, You're brought back into the moments of when my daughter Laura passed away and all the different emotions that you feel after such a tragic event and I think that that is how I healed from all of the the pain and the heartbreak is just by talking to people and sharing the awkwardness Yeah for sure and it We don't often hear that grief is an awkward experience, But it is Yes So after Laura died, So suddenly we live in a pretty small closely connected community and I Still had two younger daughters who were 12 and 9 at the time and I we needed to keep parenting them which meant that I had to keep driving them to school and they were 9 and 12 and so I knew I needed to keep being part of the community and going grocery shopping and Just going around town and I didn't I didn't want to have those pity looks at me And I knew that I was gonna get them and I didn't want that elephant in the room and that awkwardness so I just sort of willed myself to go up to people that I knew and parents who had been parents of children in Laura's grade and I would just Go right up to them and I would say how are you doing? And how's your daughter doing and you could just tell that they would be relieved that I had just sort of started talking to them at first and then I would even Bring up Laura's name because I was still her mom and I still wanted to brag about her I still wanted to talk about her and they you could tell they were very relieved that I'd done that I Definitely want to talk about this permission that we have to continue speaking the names of our people because in one story that you told I believe it was about Passover or another dinner where the entire evening happened and no one said Laura's name and like you've stormed out in anger understandably and and I've been in these moments myself where I'm looking around the table I'm like doesn't anyone know that she's gone like just this baffled and it's it's like in grief. We almost become Unable to speak the name ourselves But we're so desperately wanting others to say their names and remember them as much as we are because it's it's like a solo Agony on the inside. So I'm wondering What? Prompted you to start speaking her name or was it just something that never stopped I Don't think it ever stopped I think Because she died so suddenly she died from a brain tumor that came on from a couple weeks of headaches and then bringing her to the hospital and Basically, She stopped breathing the day we brought her in so she had been in school on a Tuesday afternoon and basically In a coma and on life support on Wednesday afternoon or Wednesday evening so it was like a car crash rather than a brain tumor death and Immediately when she when she died we just were obviously in shock But it still felt like she was still alive it felt like she was at college or at a summer program And so, Of course, I wanted to talk about her because I felt her presence. I felt like she was still there And I did learn that When I went around town especially in the grocery store that was those were one of the the hardest times because I knew I would run into people and I didn't mind if they brought up Laura's name. In fact, I I wanted them to I think from the other person's perspective. They always they think that the person who's in grief will cry or be sad if they mention the deceased person's name and I don't quite understand that because I was thinking about Laura 24-7 And how could I not be thinking about her and I I wanted to talk about her and I I wanted people to ask me about her So that's one of the things I've learned to to tell people after writing the book is definitely bring up the person's name and and even if you're going to write a You know a condolence card. It's great to write to send a card Just don't just don't sign your name and be done with it write a little story or a couple of sentences about the person I love hearing stories about Laura even to this day I want to come back to this concept of Sudden death being like a car crash because that was something that I mean i'm getting chills Now as i'm saying it because it's not this Your brain doesn't get the time to watch them die and so They're literally alive one moment and not the next and it's very much like a car crash and that was your husband that mentioned that right Yep, Yeah, I think that's so great. I think that's so great. I think that's so great I think that's so wise It just it upended every rule that we thought existed in the world, You know We we hear about people getting diagnosed and dying suddenly But usually it doesn't happen that way. Usually if it is a diagnosis there's some time to process it and come to terms with it and then be able to say your goodbyes and for us it was Just the opposite. It was we didn't we didn't expect that um in a million years not to our daughter who was our oldest and and doing so great in school and and She was our oldest and obviously every every child is so precious and to have someone just die that suddenly it It just ripped our hearts out So and we learned um that we were you know We were the same people that we were on a Tuesday that we were on that Wednesday night Or when the doctors finally declared her brain dead We still wanted our friends to be around us. We didn't want them to ignore us and pull back They felt that awkwardness about grief Um, If we had lost our friends at that point, We would have lost so much more So we really we really appreciated them listening to us and going Just sitting with us and talking and let and listening listening not judging how we were coping And even even in those first couple of Days I still remember a friend coming up to me and saying well you'll smile again one day and I just thought that's That's such a low ceiling a low A low speed for the rest of my life. You just gave me the lowest bar in the world And you know, We had 40 or 50 we have 40 or 50 years to live and to think that smiling would be the height of our joy seemed so depressing and And even more so because we had so many people around us during those first couple of weeks After her death we had already smiled and in fact we had already laughed and that felt it made me feel very guilty as if we shouldn't have been doing that because Our daughter had died and how could we be in the least bit happy but in those first couple of weeks you're just in complete shock I want to talk about uh the Physical Anxiety of grief. This is something that came up quite a lot in your book not only for you But for your daughters as well, Especially immediately after Laura's death and it's something that Megan Devine came on the show About a year ago and talked about having chest pains and feeling ill and feeling like she was dying after the death of her partner Matt and it's a it's a I thought I was dying After the death of my mom it not only death not only forced us to stare into the fact that we're going to die But it oftentimes can make us feel like we're dying right now So can we talk about this? Both the brain restlessness, But also the body's Experience of especially like a sudden death trauma. Yeah, I I definitely experienced that physical heaviness and the pressure on my chest I remember being in our house with some cousins from California there and one of the women Is a doctor and I remember asking her was I having a heart attack because my chest felt so heavy and my I was my my heartbeat was racing and I was breathing hard and She just told me that it was normal to have those types of experiences after a death and You know the feeling did pass but in general there was a weirdness That surrounded me for probably the first six months after Laura died It felt like a lump in my throat. It felt like I wanted to rip my skin off. It was that strong of a feeling and I had to kind of just just go with it and And you learn very quickly that each person is grieving in their own time at their own pace And I think that is a very difficult piece to understand Here I was the day that I was born I had to go to the hospital and I had to go to the hospital to get a little piece to understand Here I was the mom and I was outwardly grieving And my husband and two other daughters Dealt with it in a little bit different way a little bit more privately and I had to really remind myself that that was okay that I didn't have to manage anyone else's grief, But my own It was just a matter of being able to get through it and not be able to You know, You know, You know, You're not allowed for ourselves. No one else can fix it for us it's really tricky because there's almost like a There's a low grade paranoia that sets in that you just have to learn how to live with Well, I I often say that you you have to live with the fear and not in fear I think that's important It's so horrific having a brain tumor and we were told that it was a a rare type of childhood cancer and that it wasn't genetic, But that's hard to Convince your brain That if a child has a headache that it's not the symptom of a brain tumor and we were very frightened that A similar thing could happen to either of our other daughters or ourselves and we had to Just manage that that anxiety and that fear even though we knew now all the rules were You know, We didn't we couldn't rely on the the normal rules of life that we had relied on before laura died and so especially when One of our daughters would tell us that they had a headache Which is a normal symptom for teenagers to have or for anyone to have and I was just And I would just go into a complete meltdown because I was so afraid that That headache would be something so much more severe and I I couldn't I couldn't handle that well, And it it speaks to this experience of Well, We thought it was rare before and then all of a sudden it wasn't why shouldn't that be true again? All of a sudden our brain makes that association Like you're trying to comfort me and say that doesn't happen when it just did I have evidence for it now Terrible horrific evidence exactly. It's hard to convince your your body that something isn't true when you've experienced that horrific event so quickly and So so suddenly and traumatically so we had you know over time I had to learn To just live with that new reality that yes life can get upended very suddenly and I had to just learn to understand that That our society constructs our life so that we can wake up every day and think that one day is going to be That just because one day is good that the next day is going to be good and the reality is is that's not the case We have to learn to live with that uncertainty and that it can happen whenever and it's uh It it we're just it is out of our control We we think that we're in control of our life and we need to feel that way and we need to feel that way But the reality is that's not how the world works I want to transition now into Your story uh you and I were talking on the mic about how I got to about the middle or the last third of the book And you went into your own experience With having a brain tumor and I was like where's the part where I turn the page and find out she's gonna wake up from a bad dream and I And I was so incredibly floored that this was something that Railed through your family not once and took your daughter but twice and impacted you as well And they were totally different and yet the experience Of it. I'm like as I was reading I was like my god, This has to feel like deja vu but on the worst absolute level Yes, And yes um three so We agreed for laura for a couple of years and We started getting back our sanity and normalcy as a our family And we were surviving and I would even say thriving We just were continuing our lives and trying to reclaim as much of the lives that we loved as possible We always have that hole in our heart And it doesn't feel like our family is complete But we were gaining back our normalcy and then in september of 2012 three years about three years after laura died I started having headaches and I didn't think too much of it and then they kept coming back and I would take Tylenol or I would have a glass of wine and they would go away for a little bit When I got woken up in the middle of the night or the early morning hours I knew that something didn't feel quite right because one of the symptoms of brain tumors I had written I had learned is that the headaches Often come in the middle of the night and early morning Just because of the way the cerebral pressure is in your head and how it's affected by a tumor And I still didn't want to believe anything was wrong and I didn't want to worry my husband and I especially didn't want to worry about my children And I was planning my third daughter's bat mitzvah at the time that was going to take place in early November and I didn't want to pull the rug out from under them by having to cancel the event and I went to my doctors and they all almost patted me on the shoulder and said susan your daughter had brain tumor You know you don't And I just believed them and I tried to push it out of my mind But 10 days after the bat mitzvah and the headaches still weren't going away So I couldn't blame them on the stress anymore And finally went to a friend who's a radiologist and I had asked him if he could read the mri results Right away because I didn't want to worry anymore And uh, And he came back and he he said I can't sugarcoat this susan, But you have an aggressive brain tumor And if that's not a scary diagnosis, I don't know what is It's absolutely horrifying and again I was just waiting for this point in the book where I was like and then she's going to wake up and say it was all a bad dream because for as much conversation early in the book where you spoke about this anxiety of I'm terrified every time my daughters have a headache. I have a you know, All these other things of you know, The rare happened so who's to say it can't happen again? And here's these doctors telling you the same thing like oh that probably won't happen again There's you know a one in two million chance that that's even possible that you can have two brain tumors in the same Two brain tumors in the same family. I was I was just waiting for this part It's like and then she wakes up and it just never happened and I was like, Oh my god I literally felt my heart drop to my shoes when I read this. I was like, This is Absolutely wild and can you kind of lay out for us? As you did in the book the the similarities and differences between the two because my first thought was like Oh my god, It is the same it is genetic. It's you know, All these other things and then it turned out that it wasn't Kind of but there were some weird similarities like the amount of years they predicted it had been there in relation to Laura's death Right. Well, So when I got diagnosed, Uh, The radiologist fortunately was able to tell me that he thought it was Um a minute something called a meningioma which is a tumor that is almost always benign and so that was a little bit of a comfort as I was raised to the hospital, But You when you have a brain tumor and your daughter died of a brain tumor That's very difficult again to have your brain believe that you're not going to die as well So the strange part About us both having tumors and i've been told that they're not related Is that Laura was rushed to the hospital on a Wednesday and I was also told to go directly to the hospital From the MRI clinic on a Wednesday Laura was scheduled to have brain surgery two days later on a Friday and I ended up having brain surgery on a Friday so that was a little weird and So going through my brain surgery and recovery was very similar to what we had experienced with Laura the same people were around Family and friends and it just was a different outcome fortunately for me Laura's case had gone from bad to worse very quickly and And my story went from a horrific diagnosis to me getting better awfully quickly and that was That in a weird way connected me to to Laura in this strange way and also allowed her death to become lighter for me After having gone through something so similar to hers But hers was very virulent cancer that had already spread and where she was not able She just wouldn't have been able to recover No matter what and whereas mine was the if you're gonna get a brain tumor I was told this is the best kind of brain tumor to get and so they removed it and I recovered Fairly quickly. So it was it was a bizarre set of circumstances. That's for sure It's just so I mean the word that just keeps coming to me is wild or I have an uncle in Arkansas who's actually a contributor to this podcast on Patreon Hello, Uncle Albert, And he uses the word Unbelievable and you say it because it can mean either something really incredible or really really awful but no matter what it is, It is Unbelievable and it's but it is it's your life. I'm like you're living it. So Yeah, Unbelievable and actually that's what really prompted me to write my book is that a Couple of days after I returned home from the hospital. I woke up my husband and I said I need to get this story out I found this new purpose and because I had my own I had this truly incredible Unbelievable story as you mentioned and I felt like there were lessons to be learned Through the story it wasn't just about death. It was about Me going through something so scary as well and then all the lessons I learned from it uh, And most of those lessons had to do with my community and friends and family coming to help us out again they had already been there once through Laura's death and helping bring meals and calling me and emailing me and walking with me and listening and being so supportive and that is what helped me heal from Laura's death and all that grief and then when I Told we told the same people that I had a brain tumor and no one believed it. They thought it was a sick joke they thought that their email had been hacked or something and But even during my recovery they were there again for me to help drive me to the physical therapy appointments And to help bring dinner to us or drive my kids around and that felt like such a blessing and it really made me realize the the the truths of the universe of you know, Friendship is so important and love and being at one with the universe and Just how to be compassionate about People and have deep friendships and be authentic all these things that we know are true But I felt them in every cell of my cell of my body And I learned that some of what I experienced is called post-traumatic growth Let's definitely get into post-traumatic growth because one of the quotes that I highlighted from your book is in chapter 11 called shattering illusions And it's like the simplest sentence, But it really I'm getting chills again. It really speaks to the Radical nature of your experience and it says Laura's death didn't signify the end of her life And it's really hard, Especially when you're so close like your nose is still touching that grief that happened It's so hard to see that This is not the end of the world. It's the end of the world as I know it and those are two very different things Right Well, And you need to what I've we had to learn is this was our reality And we we had to learn that we were the ones who were the ones who were the ones who were the ones who were the ones who were Us as connected We are force- heavenly people It meant that this was our reality and we we couldn't get laura back no matter how much we wanted to and as my mother often says it is what it is and I had to Learn to accept that this was our new reality that we did have a choice, We just didn't see it at the time because we still very much knew we needed to keep parenting our two younger daughters. We didn't wanna sacrifice their futures to the death of their older sister. And we just kept parenting them and looking back, If we had stopped parenting them for even a small amount of time, People would have understood that, But it would have severely, It would have created a domino effect that would have made all of our lives that much harder going forward. So it really was a learning process, That's for sure. So for people who haven't heard this term before, Post-traumatic growth, Can you kind of lay out what it is and maybe some examples of what that looked like in your world? Sure, About a year after my brain surgery and recovery, I was talking to my sister-in-law who deals with veterans who are returning from combat and acclimating back to civilian life. And she was just talking to me and said, Well, You've heard of post-traumatic growth, Haven't you? And I had never heard those three words strung together that way. I had always heard of post-traumatic stress disorder, And when I heard those words, Post-traumatic growth, I just felt a relief, Almost a relief of guilt I'd been harboring over the past maybe five or six years. I had been feeling guilty that I had been thriving, Not only surviving, But thriving, Even after the death of a child and the diagnosis and surgery to remove a brain tumor. So what I learned, Once she told me that term, I Googled it right after she left, And each time I read another description of post-traumatic growth, It just wowed me because I had experienced almost every one of the traits of the growth. And some of those are having the deeper friendships and a renewed sense of purpose and sense of meaning in your life, Reordering your priorities, Not having the little things in life get you down as much anymore, Having more compassion for other people, And probably the largest for me is just having gratitude for what I still had and turning what I had into enough. So what I did learn about post-traumatic growth is it doesn't mean that everyone experiences it or experiences it the same way or in the same extent, And no one should judge another person if they don't experience that. It also doesn't mean that because we'd experienced the growth or the enlightenment or the wisdom, Whatever you call it, It didn't mean that we weren't also in grief or distress at the same time. I've really learned over the years that you can hold joy and you can hold suffering at the same time, And that is just how life is. It's just how messy emotions are. You have to just learn to balance out the good and the bad. So the concept of post-traumatic growth just revolutionized the way that I thought about going through trauma or tragedy, And it made me determined more than ever to write the book because it wasn't anymore a story of grief and loss. It was a story of growth and the potential for hope and getting beyond resilient, Getting almost better than how you were before. Not that you would have wanted the bad event to happen in the first place. We never would have wanted to lose Laura, But since we did lose Laura, Acknowledging that we had grown from the event really gave me a sense of, I don't know, Pride or just a sense of that things were gonna be all right. I think this is the perfect time to segue into your relationship with Trish, Who we've not yet mentioned on this interview today, And that was one of the biggest through lines in the book and on your website as well, Is your relationship with her after, During Laura's death. So can you tell that story and share this project that you're so passionate about? Well, You can tell the book has quite a lot of plot. Yes, Oh my goodness, I'm so excited for Grief Course to read it, Because I keep referring back to it. I'm like, It's because I'm still processing it. It was so amazing. The story of Trish began when on Saturday, February 21st of 2009, When the doctors had told us that Laura was basically brain dead. That was a legal term. Her brain wasn't working anymore, But her heart was still pumping. An organ donor coordinator came into our room and asked us if we had considered donating Laura's organs. And at the time, We were obviously in shock. It was the worst day of our lives, And here someone was asking us to donate her organs. And we, As a family, We knew that organ donation was a noble concept and something that could save other people's lives, But it was an abstract concept. And it was a decision that we never in a million years thought we'd have to make for our family, For our daughter. And so we talked about it, And we asked our rabbi what he thought about how Judaism would view organ donation. And he told us that it was probably the highest mitzvah to help another person if it could save the life of a person. That was something that Judaism very much respected. And at the same time we were talking, Our 12-year-old daughter Sarah entered the conversation and just was really passionate about telling us that if Laura's organs could save anyone's life, Why would we not decide to do that? And I think she kind of pushed us over the edge to making the decision to donate Laura's internal organs. And by the end of the afternoon, They had finally found a match for her liver. And Laura's liver ended up being flown out all the way to New York City, Where a woman who is a special education teacher, A 40-year-old woman, Her liver had gone into failure 10 days earlier, And she had been in the liver coma for 10 days. The drugs that she'd been taking to cure her leukemia had killed her liver. And you can't live without a liver. There's no dialysis for a liver. And her husband was actually going to say goodbye to her in the hospital on that Sunday morning. And nurses were rushing around her room, And he wondered what was happening. And the nurses said, Well, Didn't you hear? A liver has become available. So Trish, Really, Trish entered our lives because we learned about her, We learned about her gratitude for the organ when she wrote us a thank you letter three months later. It's such an incredible connection that you have because, And I love that your husband was kind of an instigator for continuing this relationship, In the book and your girls too, Because it's like once you found out who she was, What the circumstances were, Their drive to meet her was like, We gotta see her. We have to hug her and hear the story and everything what that looks like. And I don't know, From reading the book, I don't know if I got the sense that you were totally on board from the beginning, But then once it happened, It was like, Wow. Yeah, It's been a huge, Huge, Huge, Huge, Huge, Huge, Huge motivator for our family, A huge sense of healing. It helped to make sense of something that seemed so senseless to us. And so we couldn't really know Trish's identity for probably the first year, 18 months. We could communicate, But only through the organ donor networks. We couldn't know her name or where she lived or her phone number. And then finally, When we did learn it, My husband and kids wanted to call her right away the first night that we knew her information. And we all got on the phone and were able to talk. And it was very emotional. And it was just great. She knew how to talk to our kids because she's a teacher. And we decided to keep in touch and to actually meet one day. And that's what happened. Over spring break in 2011, Two years from when Laura passed away, We met in New York City in a hotel room and we met her and her husband, Gary, And we re-coordinated and started sitting down and telling our stories again to each other. And it was quite extraordinary. And we all got along almost as if we were family. So in the years since then, We've seen each other probably four or five times and we're gonna go out there again this summer to visit and reconnect. And it's just been incredible that even though Laura died, Laura really is the hero and she's alive in a special way in that she saved another woman's life. And that has been incredibly healing for us. And it's made us want to increase the education and awareness of the need for organ donors and really begun to understand how many people are still on the waiting list and how many people could be saved if an organ became available and more people would agree to become organ donors. So I wonder if we could take a quick second and go through maybe a couple of myths that society believes to be true right now about organ donation or maybe things that are outdated and then some truths, The reality. Well, I think the biggest myth that is out there that might prevent people from agreeing to be an organ donor, They think that the hospital or the doctors won't try as hard to save them as the patient. They almost think that the people who are wanting the organs who are gonna be recovering the organs will jump in and overrule the healthcare of the patient of themselves. And that can't be farther from the truth. There are two independent teams of doctors. One is working on the patient, Totally concerned about the patient's health. And the organ coordinators aren't brought in until the patient has been declared legally brain dead. And there's a special test to figure out if that person has died. They're on a machine and their heart's still pumping which allows the organs to be fed the oxygen and the blood, But the two teams are completely separate. And I'm trying to think of another myth that is out there. I think one of the ones that came up for me when you were going down the list of things you had to reckon with, Because literally you and your husband, Ron, Were handed this paperwork either as Laura was dying or immediately afterwards, Like you should consider it and I'll come back in an hour and see what you think. And you were like, What, What, What, What? Like all of a sudden, All of this extra decision on top of everything that already had happened was thrust into your hands. And the thing that I was most curious about was that I believe there's either seven or eight organs that can be donated in the human body. And I guess I only ever associate like, I could probably name three, Like heart, Lungs, Liver, But things like the corneas in our eyes can be donated. And I was like, Wait a minute, That's really cool. I mean, Really weird, But really cool. And there's a comedian, John Mulaney, That does a sketch about Jerry Orbach from, I believe, Law & Order SVU, Was an organ donor and donated his eyes were given to two different New Yorkers. And so they were given the gift of sight because of Jerry Orbach's eyes. And he donated his corneas. And he does this really funny skit about how wouldn't it be funny if the two people who had each of his eyes somehow fell in love in a romantic comedy in New York City. But so it's just this funny normalization of organ donation because it's something that like, I went to the DMV at 16 and checked that box, Like, Yes, Make me one. And so now I am registered as an organ donor for the rest of my life. But I think it's something that squicks people out a little bit. Yeah. Well, I think, So what happened is we were given many choices about what we wanted to, What we would allow to be donated. And yes, I think there are seven or eight organs that can be donated. But there are also a lot of other choices, Including the corneas. And that was one area that I wish we had learned more about when we were asked to donate her, Laura's corneas. I think my husband and I thought it was the whole eye that would be donated. And at the time it just, We couldn't imagine seeing Laura's eyes and someone else. It just seemed so invasive and so emotional. And since then I've learned a lot more. And the cornea is, I believe, Just the outer layer of the eye. And if we had that choice again, I would have donated her corneas. But what I have learned is that tissue and ligaments and skin, There are just, There's quite a list of other parts of the body that can be donated that can help another person in need. Every, I think there are about 114, 000 people on the national waiting list that are waiting for organs. And every 10 minutes someone goes on that list and each person can actually save eight people's lives and help improve the lives of 50 other people. So there's just a tremendous amount that can just can be a positive domino effect and just life saving, Miraculously life saving if those organs are able to be recovered and the family members agree to donate them. And so I think it's very important that not only should people think about registering to become organ donors and you can do that on your license or you can do that through registerme. Org, You can also go on your iPhone and go into your medical ID app and you can register as simply as going on your iPhone. And the most important piece in addition to registering is to talk to your family about your wishes. Because those are the people that are typically gonna be around your bedside and they're the ones that are gonna be able to push to have your wishes be known. And that's really important too. And it's like remarkably easy, But it's a thing that people don't have to think about and so they don't. Yeah, I think it's really incredible. And I'm like, For me, I'm like, Well, I'm done using this, So why not you guys? It's the ultimate form of recycling. I've gotten all, Oh my gosh, That's a great way to phrase it. I've gotten all, I've gotten out of this guy. Exactly, Well, And we talk about the growth from trauma and which has been such a hopeful concept to me and one of the aspects of how Laura's life has changed our family is my middle daughter who was the one that was advocating for us to donate Laura's organs, She's now 22 and started a chapter of an organ donation advocacy chapter when she was in college. It's called SODA, Student Organ Donation Advocates. And then when she graduated from college, She decided to go national with the program and now there are 15 chapters of SODA across the country and their purpose and goal is to increase the awareness for the need of organs and really have a forum where students can discuss all elements of the process and all the different ethical dilemmas and just how people can increase the registration rate. So it's really been a positive in our family. It's given her purpose, A whole renewed purpose that she might not have had otherwise. And it's such a permission to, I'm working on this in my own book, Permission to Grief, But permission to take our grief outside of the body. So to do things like start charities or do walk runs or 5Ks or organizations or informational groups at some level that are like, Hey, If you didn't know, Now you know. Now it's available to you with this, These information and these organizations and just yeah, Permission to let our stories and let our grief live outside of our bodies and be absorbed and heard by other people. Well, And I have to say, I think that's one of the most meaningful aspects of having published the book and talking about the book at different bookstores and different book clubs and organizations is my book is allowing people to speak, Giving them permission to tell their story and to be heard. And that's a powerful permission to allow other people to speak their truth and to allow them to talk about things that normally people wanna push under the rug. I think especially many years ago, People just didn't want to admit that anyone in their family had cancer or died of a suicide or an overdose or even just died of old age. And I think our society is getting better but it's still not there in terms of being grief well. I think we have a long way to go and I think it's important all the books that are being written about grief to take away that awkwardness and allow people to be more authentic and vulnerable and lowering their bar and making people realize that everyone has their issues. When I was talking to people, I had nauseum after Laura died and I needed to connect with people because that's the only thing that helped me relieve the weirdness and the grief. Whenever I would talk about Laura's death, The person across the table from me would be very, Very interested in hearing my story and then invariably, They would say to me, Well, My situation can't compare to yours but, And then they would talk about their divorce or their career disappointment or their family having been killed in a car crash and it allowed them to tell their story because I no longer felt like I was, They didn't look at me as though I was perfect anymore. I had been vulnerable and shared my story and they felt then comfortable sharing theirs. I think that's so powerful because it speaks to, Like the instant we show our cards, People are like, Oh, Here's all mine, Like, Oh my God, That's so exciting. We feel like we can all breathe around each other again. Just that allowance to be human. I have one question left for you before we tell everybody listening where they can find you and that is, I was not ignorant to the dates that were at the top of my head and I was not able to find them. I was not ignorant to the dates that were at the top of each chapter in the book and I am super aware that as of this year, You all are 10 years out from Laura's death and I'm wondering, I know in one chapter of the book, You talked about how the anniversary itself holds no magic, Like no power, Like no mystical, More or less dates have as much power as we give them but I'm wondering if there's something that Laura has asked you to learn, Prompted you to learn anything that's come forward really strongly in these past 10 years that you wish maybe you knew then or that you're glad that you know now? Well, It's kind of strange how the publishing of the book came almost exactly around the 10 year anniversary. I couldn't have planned it if I had tried and I think the book has helped keep Laura close to us in a way that is just really meaningful to me. She, It feels like I'm keeping alive her legacy. Over time, So there was a moment that I talk about in the book where a couple months after Laura died, I was searching through my dresser drawer and came across a chain bracelet that she had always worn that we must have gotten, The hospital must have given us, Given to us after she died. And it was one of her favorite bracelets, Favorite pieces of jewelry and I put it on and I haven't really taken it off since. And at first, The bracelet felt very heavy on my arm and over the years, It's become something that I've become so accustomed to that it feels like it's part of my body and in the same way, It just feels like Laura is now embedded in my DNA. And so I think about her often now, I think about her but it doesn't feel quite as heavy and as sad. It feels as though she's part of me and she always will. And I think that that is something that I wish I had known in those first months and years of the racking, Horrific grief where I never thought it was gonna get better and it took a while for it to get better. It took a couple of years but it's now been 10 years and I think we have adjusted to that new reality but knowing that she still is with us and that the fact that she also was an organ donor and saved a person's life and that we have continued on in such a strong way while keeping her memory alive, It just, I don't know, It's something that is very fulfilling to us and it makes us allow us to just keep going forward in a positive way. It's like she's moved somewhere else energetically, Like the amount of space that she takes up in your worlds is the same, Maybe even more because you're all carrying her forward in such different ways through soda, Through your book, Through all of these different things that you do but yeah, That energy levels become integrated. Exactly and we've always wanted to make sure we remember Laura not just as someone who was perfect or saint-like but someone who was human and we laugh about her sometimes, We talk about what she would have thought about different events and it makes her still real and we talk about her often and that keeps her alive as well in our family.

Reviews

Well done and full of hope. Thank you for sharing.