Laura Weiss - The Journey to Healthy Grieving

 SS EP8 Laura + Ben 

[00:00:44] Hey guys. Welcome back to the Surviving Siblings podcast Today I have an incredible guest. Her name is Laura Weiss. Laura, welcome to the podcast.

[00:00:55] Laura: Thanks, Maya. I'm super happy to be here and tell Ben's story.

[00:00:59] Maya: I am super excited to have you here as well, and I wanna dive straight in and tell Ben's story, your story, and really your whole journey. And I know it's been quite a journey for you. So I'm gonna hand it over to you and you can tell us a little bit about your background, your relationship with your brother, and then the progression, unfortunately, to his passing, because you have quite a unique story.

[00:01:22] So I'm gonna hand it over to you, Laura.

[00:01:24] Laura: Sure. Yeah, Ben was one of my best friends. He was almost, we were very close, so he was almost more A almost like a child to me than a brother. We really stuck together growing up. We grew up as two of five children. It was pretty chaotic growing up. Mom worked nights, dad worked days.

[00:01:42] Mom had her own mental health issues that she deals with, and my dad was the son of alcoholics, so he was a pleaser and constantly worried about mom. So we were left to our own devices quite a bit, if maybe there was food in the microwave when you get home, maybe there wasn't making sure the homework was done.

[00:01:59] As I tell Ben's story, he even growing up was on the dramatic side and. Stubborn and sassy. He absolutely loved animals, loved his family, and was a very forgiving person. I actually see a lot of him in my son who was instantly forgiving no matter what happens. Because his love for his family was just that big.

[00:02:20] When bullying or picking on started, I'd be the one to get on the bus and go talk to the adult or get off the bus and go talk to the kids and try to straighten them out to protect him. He had, he gave great advice even though he didn't feel like, he always said that he was boring.

[00:02:37] Let a life of being constantly bored. And I never saw that in him. He was a people person, whether he recognized it or not, and he always knew the right thing to say. That's one thing that I always miss about him. He absolutely loved his nieces and his nephew. He was a caregiver and would've given the shirt off his back to any of them that might have needed anything.

[00:02:58] He is the type of person that can make you infuriated with his stubbornness and then make you laugh in the next second. So he was always, keeping me on my toes, always constantly connected to what his niece and nephew were doing. And he only lived about an hour and a half away.

[00:03:13] So we were able to get together, barring the weather here in upstate New York. We would get together quite often and oftentimes we would be getting together even if the rest of the family wasn't with the rest of the family. You, we always say you do the thing, you show up for two hours at Christmas, you have the Turkey, you open the present, you go home, you just show up and do the thing.

[00:03:31] It wasn't, it never has been very emotive. We don't talk, there's no hugging, there's no deep seated conversations. So that was something that I had with Ben. And I don't have with any of my other siblings or my parents even to this day. So it was always comforting to know that I had someone as close to me as Ben was because of the fact that I didn't have that with anybody else prior to, my husband, I had girlfriends that I'm super close to, but it's just different when you come up and he knows, he knew the story of, how we grew up and it was comforting to have someone who had almost the same story as I did.

[00:04:07] Really?

[00:04:08] Maya: Yeah. Yeah. That's what our siblings are, right? They, people who have not gone through this loss Laura? They don't understand, sometimes what they have until it's gone. And I don't wish this on anybody, but our siblings are so special and to help educate people. The reason why this loss is so significant, there's so many reasons out there, but one of the main reasons is because nobody experiences life like you, like a sibling, because you typically have the same parents, the same ecosystem.

[00:04:37] You grow up together. They're your first friend, they're your first enemy, they're your first fight, they're your first playmate. So it's an experience, and I can connect with you as well, because I know what it's like to be the caretaker and to take care of your siblings. And that's a whole additional bond too.

[00:04:54] Laura: Yeah. When Ben was in middle school, I was the first person that he came out to and it was really always a badge of honor for me that he felt safe enough and loved enough that I wouldn't judge him, and that I would, he'd still be my ben no matter who he was or who he loved. That was one of those moments where when you live in a small town, you don't know what you're up against when you are viewed as different.

[00:05:18] Those protective motherly instincts took over after, I knew, but when he officially told me I felt that I could take that information and still keep him safe. And feeling like he could still move forward in this town where there wasn't a large and isn't a large gay community.

[00:05:34] Traveling with him to other places so that he could, go to drag bars and gay bars. And we had a blast doing so. 

[00:05:42] Maya: Yeah. I love that.

[00:05:43] Laura: with his community he opened my eyes to a lot of different things that I never would've experienced if he wasn't who he was. My sister is best friends with my mother.

[00:05:52] My oldest brother is best friends with my mother, my youngest brother. He has Asperger's, so he doesn't really have a whole lot of emotions, even though we didn't talk as a family or remote as a family. And then my parents were just so distant that it, that Ben was really that connection to. He knew my relationship with my parents.

[00:06:10] He knew that I distanced myself from them and that I didn't appreciate how we grew up basically fending for ourselves in organized chaos. They taught me how I did not want to parent. Taking note the whole time I was growing up of what I was going to do differently when I had my own children.

[00:06:25] And he knew that, but he could still love me regardless of my relationship with our parents, even though he was so forgiving of everything and just moving forward. Whereas my other siblings, I was always the jerk. I was always the one making a big deal out of everything. 

[00:06:39] Maya: Yeah, I know what that

[00:06:40] Laura: learned, yeah, I've learned a lot through therapy on how to deal with that, especially within my own head.

[00:06:45] Oh, I'm not gonna say anything 'cause I'm always the jerk. I've moved on from that. But Ben always just accepted everybody for who they were. He was my safe place as much as I was his safe place. I.

[00:06:55] Maya: Yeah, I definitely can tell that he felt safe with you to come out to you and to then bring you along that journey and that experience as well. I wanna go with you guys, like that's, that sounds so fun. But he knew he was safe with you to tell you that and open you up to this other world, and that was his world.

[00:07:14] And I think that's really special. Like those are super special memories, I'm sure.

[00:07:18] Laura: Yes. And now I can think about it and grieve him appropriately. It did take a lot of work, took a lot of I, when I. Initially sought therapy. I just sought grief therapy. But I ended up with a grief and trauma therapist, which I think was what the ticket was. 'cause I had trauma that I didn't realize I had to work through in order to grieve him appropriately.

[00:07:37] I can feel sad. I can write about him in my journal. I can look at, I have his hat and one of his hats and I have a pair of his glasses, a couple of his t-shirts. I can look at those things and wear those things and be okay and feel sad he's not here because it's not fair. But I'm also not, my light is on, my light is not out.

[00:07:55] And at a certain point in my grief process, my husband looked at me, he said, this isn't going to work. Your light is out. You are not doing the work that you think you're doing in grieving your brother. And so that trauma really needed to be addressed in order for me to have a healthy sadness that he's not here.

[00:08:14] But appreciation for the fact that we had the time that we had.

[00:08:18] Maya: I think that's so beautiful, Laura. And I think one of the things about, there's so many layers to your story of loss and Ben, but I think it's really beautiful that your husband is such a support for you and has been such a support for you and was able to say to you, hang on a second.

[00:08:34] I think it's time for you to get some help for this. And I love I love when we have supportive partners. I think that's really, we can, we're strong, we can make it through these things, but. To have those people in our life is just so special. And it makes the process, I don't wanna say easier, but you just feel supported.

[00:08:52] And it helps move the process in a direction that I think I, again, is healthier. It can be hard, as you, you see in, in groups and from other people that have lost where, they don't have someone that's supportive in their life. So I really like that part. And I really wanna highlight that part of your story too, because, and I love how you say the light, like your light, that analogy, I think that's beautiful and I think a lot of people can connect with that.

[00:09:16] Laura: I know no one needs permission to get help. It's okay to need help and ask for help, but he almost was giving me permission. I thought I was doing okay. I thought that was how sad I was supposed to feel. But, my husband lost his father 14 years ago. And so he understands a big loss.

[00:09:32] He absolutely loved Ben. And actually my husband was able to keep in better contact with my brother-in-law after Ben passed than I was healthly able to do. When I. I couldn't reach out and I couldn't talk to him because it was just too hard. My husband was still able to talk to him and say no, she's okay.

[00:09:48] She's not mad at you. She still loves you. Of course you're one of us. She just needs time and she needs to do this work. So he was also able to maintain that connection with my brother-in-law, almost in my place when I couldn't, because it just, I wasn't there yet. Now I'm there and I've actually been able to work with my brother-in-law.

[00:10:05] He, he went into counseling and I said to him I think it's great and any counseling's good, I didn't have a grief counselor. I had a grief and trauma, and I'm sure that there are things to get you to this healthy place to feel sad enough, but not to feel like it's putting out your light or taking over your life.

[00:10:22] And it did. It had taken over my life and since he's actually changed counselors I'm hoping that helps him move into a place where it's a healthy amount of grief.

[00:10:31] Maya: Yeah, what a great point too that again, I think that's beautiful that your husband's able to maintain that relationship for you and help you along in that journey because sometimes it is really painful. And I, as you guys know from my story, I stayed in touch with my brother's girlfriend, but it was ebbs and flows and we don't talk a whole lot now and it's a different type of relationship.

[00:10:50] They weren't married, but I can connect with that. It can be painful sometimes because that person represents your brother, that's like their love was poured into that person as well. So it can be difficult, but it sounds like you guys have been able to support each other in a really beautiful way.

[00:11:06] And I think it's a journey, right? It evolves. And I think that's really the message there too.

[00:11:11] Laura: It absolutely is a journey. And it's not easy. Not that it's easy, we have to keep moving forward. I have my children who absolutely adore their uncles and I need to be able to be healthy enough for them to feel like they can grieve this appropriately and that they can, how to move forward.

[00:11:27] And they're looking at me, I'm their role model in this. I don't do it just for myself. I do it for them too. And I've learned a lot about myself and a lot about how I interact with my family members. And I think that through work that's even healthy in a healthy spot too, I know my healthy boundaries.

[00:11:41] And even though, when Ben was passing, I made some promises that I. I had to rework so that they worked for me in terms of how I interact with my family. I was able to do that work and set those healthy boundaries so that I can move forward in, in a good spot just to, to be a role model for them even if that's all that I'm able to do.

[00:12:00] It's been very helpful.

[00:12:02] Maya: Yeah, I know. I'm so blown away by your growth and your progression and your grief journey and, it's a journey for life, like we, we say, right? But I'm just blown away. So I wanna go back to the beginning of Ben's story and his law story, unfortunately is a long one. It's a long story.

[00:12:21] And I know you're gonna educate us today as well about what Ben unfortunately was diagnosed with and his journey. And this is not something that a lot of people know about. At least I didn't until I read your story and spoke with you. So could you take us back there, Laura, and tell us a little bit about Ben's diagnosis and his journey.

[00:12:41] Laura: Absolutely. We didn't know Ben was sick and actually Ben didn't know he was sick either. He ended up with a freak genetic condition called Alpha one antitrypsin deficiency. It affects about one out of every 100,000 Americans, and it often presents as something like C O P D or lung disease. It either attacks your lungs or it attacks your liver.

[00:13:05] Ben's was even more rare because his attacked his liver and not his lungs. The attacking your lungs is much more common. So when my sister had a baby in February of 2013, and of course it's the middle of winter, it's upstate, we didn't see a whole lot of each other, even though we talked by phone quite often.

[00:13:24] Ben always loved to check in with my son. He was in, kindergarten at the time, and it was just a trip for him to hear his stories. So we talked quite often, but I hadn't seen him. So since it had been cold and we'd been apart for a while, we wanted to meet the baby. We hosted Easter that year in 2013, so in April.

[00:13:41] We had everyone at come to our house and in walks Ben, and he was orange from head to toe. Even the whites of his eyes were bright yellow. And I remember making eye contact with my mother and looking at him and looking at her and her looking at me and just knowing that's not what he's supposed to look like.

[00:14:01] It was shocking the way that he looked. So I remember saying to her, not making a big deal out of it 'cause God forbid we emote. But saying to her in private does he look yellow and orange to you? And she said the same thing to me. And I. I figured that she'd catch up with him. I don't know if she had any conversation with him, but after we did the thing and we had the Easter dinner, about two hours as it usually is, everybody left, but Ben and Brett stayed and we were actually having a couple glasses of wine and talking, and I asked him are you feeling okay?

[00:14:32] You look a little peeked just went and he was feeling fine and nothing was wrong and he didn't have anything to report. Now, at the time, he was working multiple part-time jobs and he didn't have health insurance, so I was encouraging him to just go get checked out, let me know if you need help with any of the financing of that, but why don't you go get checked out?

[00:14:54] Sitting around that table that day, he kept saying he was just fine. So I didn't know any different and I actually don't know about any conversations that my mother might have had with him. In between Easter and June. Now, in June I got a phone call from my brother-in-law that said he had, Ben had been taken to the hospital.

[00:15:15] He hadn't eaten and slept. He'd been in a pain that was 10 plus for days upon days. His belly was all distended and finally he said he would refuse to help. Finally, he said, no, I need to go to the hospital. I was, I believe I was on my home, way home from work because I remember being in the car.

[00:15:32] So I hung up. I said, okay, I'm gonna go get the family situated and I will come to you. So at the time my daughter who had just turned one, had something going on with her medically and we couldn't quite figure out where it is. And this kind of comes into play with my relationship with my parents and how they responded because I called them next and they said, as I'm getting my one-year-old and my four-year-old organized and, telling my husband what's happening and trying to get on the road to go see Ben, I called them and they had just gotten to a conference for work that was in Virginia and we're in upstate New York.

[00:16:05] And I told them, and my mom's response was, that's liver failure. And we'd never had a conversation about his health or what the yellow orange means. I'm not in the medical field. In between. And she got very upset. But then they stayed in Virginia for four days and that started the path of me really looking at my parents as just less than parents.

[00:16:28] 'cause in my opinion, I would handcuff myself to my child until I knew what was wrong and not. Not let them down in that way. But they stayed for four days. So I went to be with my brother and my brother-in-law and, he had he had to be drained, his belly had to be drained. He had about five liter liters of fluid and his belly.

[00:16:48] And he had one gastroenterologist that kept coming into his room in the I C U and asking him questions that I never would've thought to ask him about his lifestyle and his medicines and what, what he drinks, what he eats. He was a cigarette smoker. And he just kept saying, that's not it.

[00:17:03] I can't put my finger on it, but that's not it. That's not it. And he knew there was something that was wrong. He managed to refer him to another gastroenterologist who gave us the diagnosis of alpha one anti tryptan deficiency. So your liver has something called a MELD score that's anywhere from six to 40, and the higher it is, the sicker your liver is.

[00:17:26] According to the research, alpha one tends to present between the ages of 25 and 50, usually white Caucasians. With a European background, you have a protein that's made in your liver called a t, and it helps protect your lungs. If you don't have enough of this, a t, your lungs can be easily damaged by pollution, dust, covid, cigarette smoking or smoking anything else.

[00:17:51] And often it's diagnosed as C O P D. You can have treatment for the rest of your life. There is, and live a relatively normal life, but there is no cure. You just have to do these augmented therapies. And the increased level of a t helps protect your lungs and that protein is in there. Now, Ben's affected his liver because his liver was making the a t, it just wasn't able to release the a t to his lungs.

[00:18:17] So he was getting Somehow all that trapped down in his liver and his liver wasn't functioning correctly to release it to his lungs. So he, he used to get really mad because the they would always say that he wasn't sick enough. As long as he took his meds, his med score would stay down and he just wasn't sick enough because you can have a liver transplant or lung transplants.

[00:18:38] And he met with those teams in a bigger city in our state and they just kept saying you're not sick enough to even go on the list for a liver transplant, which was infuriating for him. His mouth score highest was never got higher than 22. It was usually between 17 and 22, which is pretty sick, but nowhere near 40, which is where he would end up on a list for the potential of a liver transplant.

[00:19:02] So he just never quite got there. But he could have lived. Long and productive healthy lifestyle with his treatments and with his therapies and with his medicine. The problem with Ben is that he is extremely stubborn. And so about once every six months, we just started riding this wave about once every six months, he would hit the wall and the medicines made him sicker than he wanted to feel, and he wasn't gonna survive anyway.

[00:19:29] And he'd stopped taking his meds. He'd start to fill up with fluid. He'd end up back in the hospital in pain being drained, he'd get back on onto his medications. So

[00:19:40] Maya: a cycle like

[00:19:41] Laura: was a cycle.

[00:19:42] Maya: Yeah.

[00:19:43] Laura: was supposed to stop drinking. He was supposed to stop smoking. He didn't stop doing either of those things. So when he'd tank and go off his meds, even though they weren't even good on his meds, he'd get even worse and he'd get sicker and sicker.

[00:19:55] He also hated his gastroenterologist and you couldn't tell him

[00:19:59] Maya: That doesn't help. Doesn't help if you don't like your doctor, that doesn't help on

[00:20:03] Laura: Anything. So he, it's not if I don't take my meds, it hurts him, but he didn't like him at all. So because of his liver function, he couldn't even take a Tylenol. So as he got sicker and sicker because of this tidal wave that he was riding, he couldn't go on something like an antidepressant.

[00:20:19] At a certain point he lost his Social security disability. Unfortunately the system is such that they give you three years and then they say let's go reassess. And they could say it's been three years, you are still working part-time. Obviously you can be on your feet, so you don't need this anymore.

[00:20:34] Which wasn't the case because he eventually got to a point where the pain was such that he couldn't work. So then he had social isolation and then he would lose his therapist because he was, he had lost his in his social security disability again. So it was a really tough road. And that took us way up to 2018, which is, about a five year journey when he When he would go on meds, off meds and back and

[00:20:58] Maya: cycle, Laura. That's so tough. It's not only taxing for him on his body, mentally and emotionally and someone who's, worked multiple jobs and just been on the go go. And then now he's, dealing with this. And I didn't know that as well about the social security and how that ha we all know there's lots of things that are broken with our system.

[00:21:20] That's a whole other podcast. But I didn't know that it was three years and then, Reassessing and I can understand, I can hear them saying, if you can work part-time, working a part-time gig is totally different than being able to provide for yourself full-time.

[00:21:36] That's totally different. And I can just hear them saying something like that, because I've heard a lot of stories, that are just, they break your heart. But I didn't realize there was like that three year mark, which if you're chronically ill,

[00:21:51] Laura: His

[00:21:51] Maya: What's gonna change in three years?

[00:21:53] That's crazy.

[00:21:54] Laura: I don't know that other cases aren't shorter or longer. His ended up being three years. And so he'd come off it and then of course he'd end up with the doctor's reports and everything back and be back on social security disability. But it was just another reason why nothing was going right and he wasn't gonna take the meds.

[00:22:10] And he was just so stubborn, when he was in his right mind he had the right mindset about it. He was doing his therapies, he was taking his medicines. And ultimately in 2018 when he had to stop working, I found that staying home for him seemed to be better for his mental health.

[00:22:26] He went to college for a very short period of time. And it's interesting 'cause when he went for acting and even though he describes himself as boring and bored I just always thought he was such a people person, but really he was just acting. You'd walk into a room. He even learned all about football and b basketball so that he could engage pe He worked at a hotel that he could engage people at the front desk about the sports that were going on tv.

[00:22:48] He didn't care about sports. He didn't know anything about them, but he

[00:22:51] Maya: smart of him, right? And to your point, he was. Playing this role so I can understand what you're saying with that being okay for his mental health and potentially helpful because he didn't have to exert that energy to act or play a role or to, fill in the blank, learn something to engage with people even though he did come off as extroverted.

[00:23:12] Laura: absolutely. He S he just was always entertaining to me. And so since he always had a story to tell, famous people who came through this hotel or conversations that he had with people that made him wanna go learn even learning like the ins and outs of running a hotel, he was really good at it.

[00:23:28] And and he was a people person as much as he tried to say that he wasn't. I do think though, that when he, even though it caused social isolation when he stopped working, because it was just too painful for him to be on his feet that much for him to have to move and travel that much I do think it was almost better for his mental health.

[00:23:45] He we like to say he became kept. He would take care of the housework and all the cooking and the cleaning and the dog that they absolutely love. But he became a woman at.

[00:23:56] Maya: I, I love that you can laugh about that, but yeah, I can see how that I'm like thinking about it myself too because, I know people that. I think they're extremely extroverted and they're like, no, I actually, I'm, I have to consciously do this or exert energy and to be, battling such a long battle with this, rare gen, genetic disease that he had.

[00:24:18] That's a lot. I just think about that and I'm like, whew, I'm a little tired, thinking about doing that and engaging at that level.

[00:24:24] Laura: it's a lot. And it's frustrating when he'd go against medical advice, which happened a lot with the smoking and the drinking. I actually, once we knew what his diagnosis was it turns out that the both parents have to have the deficient gene in order for any of their children to get it. As far as I know, neither of my parents knew that they had this deficient gene.

[00:24:45] But the more children you have, the more likely the child, a child is likely to get it. Because I have children, I went and I was tested and I do not have the gene. So my children are safe. Thank God. My oldest brother has two daughters. He was tested. His girls are safe. My sister was tested.

[00:25:04] She has a child. Her child is safe. My youngest brother doesn't have any children, chose not to get tested. Which I can respect, but I don't know that won't change. Should he have children in the future? He's awful young. Neither of my parents were tested, so in my own research I learned about the gene having to come from both parents.

[00:25:22] I'm sure my mom knows that because she's in the medical field. I don't know that my dad knows, or just the guilt alone that they would carry on themselves for it. Would make it worth worthless to get, for them to get tested. So if he doesn't know, it's probably best because he's definitely a worrier and a perseverer.

[00:25:40] And he would worry about how that would affect my mom if she knows. She's definitely hiding it from him. But, he never stopped drinking or smoking either. And those are two things that could have helped with his pro progress moving forward, along with using the medications and not tanking.

[00:25:56] So we actually hit a kind of a wall June of 2021. We we stayed the exact course that he had been on. And then in June of 2021, I got a call from my brother-in-law that he had that Ben had been dropped off on the front lawn by his supposed best friend, drunk as a skunk. He'd been on a bender for days and days.

[00:26:14] He had all these empty liquor bottles in his closet that he was hiding and that he, my brother-in-law just needed help. He needed, a come to Jesus sort of moment.

[00:26:22] Maya: Did your brother-in-law think that he hadn't been drinking at that time? Laura, was he thinking that he was abstaining from alcohol and then this was oh wow, all this kind of came crashing down, or what happened leading up to this? 'cause this was a significant moment in the journey.

[00:26:37] Laura: Sure. So I think he knew that he drank. I don't think he knew the extent of his drinking. I don't

[00:26:44] Maya: bottles and Oh my gosh.

[00:26:47] Laura: I don't think any of us knew the extent of his drinking. His best friend apparently did. I've tried reaching out to her multiple times and that's, That, I've stopped doing that for my own mental health.

[00:26:57] Yeah, so I don't think he understood the extent until that morning when he's crawling in the front door. And then he found the bottles. So it was time for a mini intervention. I called my siblings, I called my parents. My parents actually did go, we drove separately, but my parents actually did go.

[00:27:15] And, it was extremely painful. It was one of the worst. Moments ever of my interactions with my brother. It was very sad and my brother-in-law did the majority of the talking. And then we just supported him and we had to lay some ground rules. If my parents ended up laying some boundaries and ground rules, I don't know what they were.

[00:27:37] I was unceremoniously let out of the house after I laid mine and I just said, I want you to be a part of my life and my family's lives, but we can't do this up and down anymore. We can't do this if you're gonna be not I. Cognizant of your own medications and your own health, because we want you around for a long time.

[00:27:55] And I don't wanna go tell my children that you had alcohol poisoning of all things, and that's what took you out. So I just said, until you can get yourself together I'm just not gonna have contact with you. And it was awful. And often people who hurt people. So he had many nasty things to say, which is fine.

[00:28:12] I had broad shoulders and that didn't affect me and I don't know if my parents set any boundaries, but that led us to not talk for a little, almost two months. He finally did reach out on my birthday, which is in AAU late August, and said, when you said, I don't wanna have any contact with you, is that forever?

[00:28:31] Because I would really, I don't want that. And so we, I absolutely not, it's not forever, but let's. Let's get healthy together. From what I understand, he had not been drinking. He still smoked till the end of time, but he had not been drinking. And so we started going back up and going, on play dates with the kids together and FaceTiming together and doing all those things throughout the fall.

[00:28:53] Which I'm really thankful for because in November was when his story his story ended with his journey. Unfortunately, we hadn't talked A couple weeks before, and I don't know why. The only thing I can chalk it up to is that I, I'm a teacher and I went back to school and the fall is really busy, which is a horrible thing to say.

[00:29:12] I had asked my brother-in-law to look back at Ben's phone to see was there someone he was communicating a lot with beforehand, texts or pictures or phone calls and nothing out of the usual. We had FaceTimed maybe two and a half, three weeks before, but we really hadn't talked leading up to leading up to his death which is terrible.

[00:29:34] I still think about that, but I have my journal and I write to him all the time, and I know that he's with me. So this past week we were on vacation and we always say, oh, Penny's from heaven. When we find a penny in public, my children and I, we found a penny every place we went. So we knew he was glad

[00:29:49] Maya: That's your sign. I love that. Yeah.

[00:29:51] Laura: that is our sign.

[00:29:52] So we knew, we know he is with us. So on November 1st, he had a doctor's appointment that was just regularly scheduled and this is of 2021. And he, his score, his levels were off the charts. The doctor was very concerned. They told him he had to go have more blood work done. He had to have a urinalysis done, and then he had to come back on Wednesday the third when he went back on Wednesday the third.

[00:30:16] It was worse than they had expected, and they wanted him admitted to the hospital. He signed himself out against medical advice and he went home. Apparently my mom knew this. I did not know this until my brother-in-law told me the following Sunday night, overnight, Saturday to Sunday my brother-in-law woke up to terrible noises in the house, and Ben was out of his mind.

[00:30:40] He was smashing things on the wall. He was completely naked speaking gibberish. He had broken many things. He was bleeding, he was walking and things. He had no idea where he was. And he was getting violent with my brother-in-law, which isn't at all who Ben was. So Brett called the ambulance and the police, and they took him to the hospital where he was still fighting.

[00:31:01] He had to be, strapped down to the bed and things. He still managed to get up and try and push and shove the nurses. It's just stay where you're supposed.

[00:31:10] Maya: Even in that state, he's showing his true colors. As a stubborn person, I enjoy your story even, with the hard times because as we've shared with each other before, my brother Andreas was extremely stubborn too. And as you guys know, listening to my story at, it's a very graphic part of my story, but at the end when he's rejecting, everything that could potentially have kept him, going, and I've watched all of that.

[00:31:34] I can look back on that now when I think of how stubborn he was too. So it's, I can connect with you on that energy of Ben, because even till the end, they're stubborn and they're, they're fighting. So Yeah, I totally understand that.

[00:31:47] Laura: Yeah, until he decided he wasn't going down without a fight, that was totally who he was. So Brett called me in the middle of the night, let me know it was happening Monday morning. My parents went I wasn't able to go Monday, but I took off the rest of the week so that, 'cause I didn't know what was going to happen, so I wasn't able to go Monday.

[00:32:05] My parents went up, they saw him, they talked to the doctors and they came home, which I didn't understand at the time. I will say that when I went up on Tuesday and you're basically sitting and staring and waiting and it was much easier to hear the doctor say, okay he's now in an induced coma and here are his levels and this is what we're watching for.

[00:32:29] And then come and sit at home than sit there. It, so I understand now why they went up and came back each day. I didn't at the time, but it's mu it was much easier to come back home than sit and stare there. On Tuesday night into Wednesday, they ended up putting him on life support. He had gotten to a point where I, again, I have no medical background, whatever his levels weren't improving.

[00:32:54] And in order to keep him alive, to make choices, we they had to put him on life support. So on Wednesday morning, I got a phone call actually from my dad asking me to ride along with him and mom, which I normally wouldn't have done to the hospital for this, for a meeting with the doctor and the patient advocate.

[00:33:12] And I said, N no, if you want I'll drive up, but no, I'm not gonna ride along. And he said, come on, it'll be a comfort to your mother. Which was, I said, I'm not a comfort to my mother.

[00:33:22] Maya: probably not the right thing to say.

[00:33:25] Laura: yeah. And now looking, and I did, I ended up riding along. But now looking back, I know why they wanted it to be me because had I not sat in that room with them and my brother-in-law and the doctors. I would've, I know they thought that I would've blamed them for the decisions that had to be made, and I understand that now. But I will tell you, I actually wrote a letter to the doctors after all was said and done, because as busy as this hospital is, as important as these doctors are, they sat in that room.

[00:33:58] No one checked their watch. No one checked their phone. They made eye contact the entire time. We were the only people on the planet at that time that they had to talk to and give information to. And we asked every question, but from the dumbest question to the most important, and they were there with us.

[00:34:13] And I respected that, and I appreciated that because, this is life and death. They made the decision based on the fact that the doctor's advice the patient advocate's advice, and my brother-in-law had found a binder that my brother had filled out with all of his wishes right there in his handwriting.

[00:34:31] He never wanted to be on life support. He never wanted to be a burden to anybody, and if he was not going to get better he wanted to go. And so it was all there in black and white. And he had all the right lingo. So I'm not sure who he consulted, but he knew what he wanted, so they

[00:34:48] Maya: did some research somehow, so yeah.

[00:34:51] Laura: let's, and again, he had to be in control.

[00:34:54] Maya: Determined in control, that stubborn. Yep. I feel his energy. Totally. Yep. 

[00:34:59] Laura: So they said, let's watch his levels overnight. Things can change at any time In an I C U, they said, let's watch overnight and tomorrow make the final decision, which was gonna be on the Thursday the 11th. And The decision was made on the 11th that he was going to be taken off life support.

[00:35:17] So we called all the siblings at my husband. We were all able to be there. While he was on life support, they only allowed one of us in at a time and we were able to have as much time as we wanted. And then they said if once he's off the life support, there's no time limit and everyone can be in there, covid restrictions, things like that, and no one will bother you.

[00:35:39] Around four o'clock on that Thursday, they took him off life support. We were not in the room when they took him off life support, but we were able to go in after they, they had taken all the machines and gotten him cleaned up. And then we were all able to go in there. Now we still gave each other the time to.

[00:35:54] I talk to him and be with him one-on-one if we wanted that. I was able to show him videos of the kids and pictures of the kids. We had our three favorite songs, had a little dance party and I sang way too loudly, I'm sure that I thought he might appreciate. And I was able to, say what I needed to say at the time.

[00:36:11] So that was good. We made the choice not to have my kids come, none of the nieces and my his nephew and my son's the only boy. We made the choice not to have them come and see him that way, which was, I think, the best choice still to this day. And then we just waited. And, especially in a family where you don't emote that the challenges are real.

[00:36:32] My oldest brother just wanted to pray and preach very loudly. Mom was just very factual. And about the medical I. Numbers on the screen. My sister was basically the same way. My dad didn't want to hear anybody talking about anything and kept asking what else we were gonna be doing. He just couldn't quite see that, once he was off life support, that this was gonna be it.

[00:36:56] I tend to approach these things with humor, which is off color and not probably appropriate in a lot of situations. But laughter helps me through things and then I, we also.

[00:37:06] Maya: I can connect with that. Definitely. Yeah. And I think a lot of people listening to this too can relate to this part of, all of your story, Laura and Ben's story, but I think bringing light to the fact that we all go through these, when we go through a really intense moment like this, we all handle it differently.

[00:37:24] And the fact that two years into this journey, after you've lost Ben, you're able to say, you know what? I handle it this way. This is how everyone else handles it, and this is their process. Because I think that's where some people can get stuck in their journey, right? Looking at around them and other family members and, we don't understand why people handle things in different ways.

[00:37:45] So I, I think that's a really another key point in your story.

[00:37:49] Laura: It's very challenging and I tend to get loud and sarcastic and, probably say a lot of things that are inappropriate, that I think are funny. My dad thought I was yelling at Ben the whole time. He'd say, stop yelling at him. Stop yelling at him. Not, and I was able to respectfully, I'm not yelling at him and then just stop whatever I was saying and move on.

[00:38:07] Because I knew that bothered him. But it was very challenging to feel so separate from, the six people that I should be so close to in those moments, I knew that I wasn't gonna need I knew that I didn't want anyone to touch me 'cause that was gonna throw me over the edge. But it was almost like, I don't want you guys to touch me.

[00:38:26] My husband was a different story, my girlfriends, my brother-in-law, different story. I, it just wasn't, I wasn't there yet. Respectfully now, after the work I've done, I can say I appreciate how they needed to grieve and they couldn't put it into words. I was able to say how I needed to do it, and that's just how I'm different from them and that's okay.

[00:38:47] So we, we talked to 'em a lot and we talked to each other quite a bit. But after a while my dad was basically delirious and my sister and my brother-in-law decided that they needed a little bit of sleep. Around one, they went back to my brother's house to catch a little bit of sleep.

[00:39:03] And my oldest brother, my mom and I just never left the room. We were there the whole time. Around five. We thought he was gonna go. And so we called and we had them come back and we all gathered round and, basically said goodbye. And I held his hand and then he didn't. And then around six, we thought he was gonna go and we all gathered round and, asked him not to haunt us, but to send us nice messages.

[00:39:27] I'm like,

[00:39:27] Maya: There's your humor coming in.

[00:39:29] Laura: Please just don't scare me, but send me pennies from heaven. And then he didn't go. And then again around 10 we thought he was gonna go and he didn't go. And I don't know if that's the normal trajectory of someone when they're off life support.

[00:39:42] But finally my brother-in-law said it's 10 o'clock now. Let's, we've all, we've been up all night. Let's get some food in our belly. So he went and just got a bunch of sandwiches and drinks and sat 'em down and we hemmed and hawed and didn't. And then finally we all sat, everyone had a sandwich.

[00:39:58] Everyone had a drink and at 10 53 he went on November the 12th of 2021. So in pure Ben fashion, he made sure everyone else was taken care of, that we all had some food in our bellies, that we were all just calm and cool and sitting, relaxing. And then he went ahead and left us. 

[00:40:17] Maya: Fashion too, 'cause it took him a couple times.

[00:40:20] Laura: I know could he not

[00:40:22] Maya: He put you guys through it a couple times, but I think that's a really beautiful part of your story, even though it's such a hard part of your story, is the fact that you guys all had something to eat and drink and then he was ready.

[00:40:34] Laura: And that's totally him, he, I was able to hold his hand and I had one hand on his chest and one hand holding his hand. And my oldest brother, who was also in the medical field, thought to get the final E K G read from those last few seconds, and I actually have a tattoo over my broken heart of his heartbeat.

[00:40:50] Maya: I love those tattoos. Like I love that. Oh my gosh. I'm so jealous of you guys, because I think that's so special. I love that. Yeah.

[00:40:58] Laura: it really does help, it really does help and I don't know why but it does, I was there with him when he had those final heartbeats and I was able to hold his hand and and then in pure family fashion, as soon as he went, my, my mother jumped up and went, You always called him your baby?

[00:41:12] I said, yes. He was like my baby. And then I'm grieving like a sister and like a mother figure. And we all, I, my husband was not there for the passing. He had come home to be with the kids that night, which was what he wanted. So I was supposed to ride home with my parents again and I just said, please come get me.

[00:41:28] And he came up and got me so that we could ride back together. And Ben could have been a very healthy alpha one instead of an alpha one, an alpha angel, which he is now. But one of the things that I've done since is I've joined the Alpha one organization. There's a walk in November, actually November is one of the worst months.

[00:41:47] It's a virtual walk, but I'm going to, I'm gonna do this walk and raise some money for them. I buy their merch. They have a big conference every year. I was

[00:41:54] Maya: And how interesting that this goes on in November and that's when Ben passed away. But anyway, I think things like that are very interesting. But that's amazing that they do all these things. And we're gonna put that in the show notes too for people's reference because you are bringing awareness to this, Laura, and I think this is something we need to, Laura, can you run through the stats with us?

[00:42:14] Because this is very rare. Can you refresh my memory on that and share with everyone what the stats are because. The only way we find out about stuff like this is through stories and sharing, but educating ourselves. And that's, one component of many that I really l love and appreciate about your story is that you're educating people about this.

[00:42:34] So can you share that with us?

[00:42:36] Laura: sure. Alpha one, usually the symptoms develop between the ages of 25 to 50. Usually it hits Families that have many children, both parents have to have the defective gene for alpha one. So it is a an abnormal alpha one gene. It affects about 100,000 Americans, and that's about one in every 3000 humans.

[00:42:58] It does not say male or female more than the other, but the more kids you have, the more at risk you have if you have the deficient gene. And what it does is it takes that a t protein that is made in your liver to protect your lungs, and it either won't let the liver release that protein to help protect your lungs.

[00:43:15] So it doesn't have enough of it, or it makes too much in your liver, can't release it, and then your lungs go unprotective and protected in your liver becomes very sick. It's often misdiagnosed as C O P D often times with alpha one because the lung version of alpha one is more common. People al almost always end up on oxygen and struggling to breathe, but because it presents as C O P D That's usually the diagnosis.

[00:43:43] So even when people pass, it could have been alpha one, but it could have been diagnosed as C O P D, especially if you were a smoker. So if you don't have enough of this,

[00:43:52] Maya: That's scary. Yeah. That you don't and for Ben, his was even more rare because his was affecting his liver. Not the lungs right away. So do, did we talk about the stats on that? That it's even more rare, right?

[00:44:08] Laura: Yeah, I know that it is the more rare of the two. I don't have the stats on that.

[00:44:12] Maya: That is just wild. Oh

[00:44:14] Laura: Just that it is underdiagnosed. Your liver's melt score should be around a six and the high end is 40. And the higher that it is, the sicker your liver is. His never got past 22. But it was always between since diagnosis between 17 and 22.

[00:44:30] And when his liver would start to fail, he would start to turn oranges, yellow down to the whites of his eyes, his fingernails and he would fill up with fluid. His abdomen would fill up with fluid and he would have to be drained. Now the more of the augmentation therapies that you attend to and take seriously the better you will be and you can live a long and healthy life.

[00:44:51] Not saying that you wouldn't maybe end up on oxygen or with other medications and therapies, but to increase that level of a t protein in your lungs is what helps keep you alive. So his was never enough to get him on a transplant list for anything. When I went in for my testing, I can tell you, my family doctor brought in the a consult from the same office because she had never heard of it either, and was asking what to mark on the sheet for the people to test my blood.

[00:45:19] And he knew of it. He knew of alpha one, he'd heard of it, and he said, are you a smoker? And I said, no, I'm not a smoker, but I don't know that I have the, I'm just testing for the gene. My brother has alpha one. And I said, he's a smoker. And he said, oh, then he's a goner. And my.

[00:45:32] Maya: Oh my gosh.

[00:45:33] Laura: Yeah. My doctor's no.

[00:45:35] I, and I don't ha I didn't have any relationship with this man. And I said no, it's his liver. And he said, Nope, it's his lungs. And he's and he was determined to tell me. And I said, but it's the liver. And that's when I started researching, 'cause the liver one is much more rare.

[00:45:46] And I apologize, I don't have the numbers.

[00:45:48] Maya: no, that's okay. I'm just cur, I'm genuinely curious because I didn't know anything about this until, we first connected and you shared with me about Ben's story and now we're sharing Ben's story with, and your story with everyone. But I think this is a really important one to share. And as a lot of you guys have requested to talk about rare diseases, genetic diseases, and so we're doing it and this is an important one.

[00:46:10] 'cause if, doctors haven't even heard about this, that's wild to me and mind blowing to me. As. Hopefully we continue to progress in the medical field. We can learn more and extend our lives and live healthier lives. And the only way we can do that is by educating people.

[00:46:24] So I appreciate you doing the research and also giving back to the community. That's amazing because November is such a hard time for you, but yeah, I think that's awesome.

[00:46:33] Laura: inside note, November 12th is also my husband's birthday, so

[00:46:37] Maya: shared that with me before, so we wanna share with everyone like, wow.

[00:46:40] Laura: I feel like Ben was intentional, and I know that's a very selfish thing to have, but I like to tell the story how at our wedding, my husband's siblings sat him down with a plate of food and were like, yes, this is a really fun part party, but you're gonna eat. And my siblings did not. They were busy taking Betts as to how long we would be married before we got divorced.

[00:47:01] All in good fun. But Ben led that and I think as a final ha, he went ahead and passed on my husband's birthday. 

[00:47:08] Maya: Well, he's a jokester like you. No wonder you guys have so many layers of a connection, but that's a comical thing to do, right?

[00:47:15] Laura: we are a little sarcastic and sassy, aren't we?

[00:47:18] Maya: Yes. I definitely get that from both of you. Yes. Wow that's definitely an interesting part of your story too. And I, I think that's interesting that it's on your husband's birthday, but you, you married a great guy though, so it all turned out okay.

[00:47:33] Laura: I also think he didn't want that to always be a sad day for me. Look, focus on something else. Go have a birthday cake. Go have fun for your husband. So I think it was multilayered. It was like a little nudge, nudge. And it was also, and it was also like, it doesn't have to be always a sad day.

[00:47:49] Which, which I try really hard, to not make it a sad day. It's usually a work day anyway. And his Ben's birthday is always the first day of school, so I can't take that day off. But he taught me how to appropriately order and what great sushi to eat. Took me to a wonderful restaurant and spent way too much money on me.

[00:48:07] So now on his birthday, I take myself out to really good sushi and celebrate him in that way. Now that I've done the work through the trauma and grief counseling I can go and not be a puddle. And really just thank goodness he let me explore sushi with him. So now I know what's good to eat, and appreciate that. So it doesn't all have to be sad. I'm sad he is not there with me, but it's also, it's one of those, I'm thankful that it happened. I'm not sad that it's over kind of moments.

[00:48:34] Maya: I do feel like that's a really good quote for your story and for all of our stories, but it takes us, different timelines and journeys. Grief is like snowflake. No two journeys are alike. We say that all the time here, and I think for your journey, it's beautiful that you're able to sit there and remember him on his birthday and have sushi and that's such a special moment, and I can't wait to see a picture of you this year doing that.

[00:48:56] I love it. But something I think I just, I've been blown away with your story. Two different things I wanna touch on, Laura. One, you talk very often about the work that you've done and you're two years into your journey and it's quite, that's very fresh still. That's very it's very rare.

[00:49:13] It's not impossible, but it's very rare that I meet people now that I'm in this community and have put my story out there and all of your stories that you get to a place where you are. And so that's why earlier in the episode, I really. Commended you for having the support of your husband to go, to therapy.

[00:49:30] But you did it. At the end of the day, it's your work. You did it. Nobody can force you to do the work and really examine your life and examine your grief journey and your trauma, and you uncovered so much from your past and present I'm sure to, and how to navigate that. And so what advice would you give our siblings that are listening or people that are supporting siblings about going to therapy, getting help and your journey because this has been so integral in, in your grief journey and your ability to share today in the way that you're able to share your story and Ben's story.

[00:50:05] Laura: Oh sure. You have to be willing to do the work. You have to It's hard. It's very, I filled an entire notebook over the course of six months. It is very, and that's not how long the therapy was, but just in six months I filled a notebook. It's very challenging. You have to be willing to do the work.

[00:50:20] You have to find a counselor that you connect with. I of course never met this woman. We met virtually every time we met, but she would just ask the right question or assign the right homework, write a letter to yourself if go create a timeline when she just had assignments for me, this homework that I did that and I could choose when I did it and where I did it.

[00:50:41] So write mind frame. Okay, now is my 30 minutes to be uninterrupted with my notebook to, sit with Ben's things and really feel it. I had to be intentional. I had to be willing to do that work. And it had to be, I'd get angry, I'd get real mad. I had one letter that I wrote to my mother that I destroyed.

[00:51:01] I knew I was never gonna send it, and I said everything, and then I just destroyed it to the point where, I ended up putting it in the sink full of water and like it completely was destroyed before I threw away the mush because that's what I needed to do. So you have to be willing to feel the feelings, you have to be intentional about the homework, and you've gotta be willing to go there.

[00:51:22] If I wasn't, I wouldn't be in the place where I am now. I'm sure of it. And I didn't realize what I didn't realize until I did the work, because I didn't think I had any trauma. I'm a grownup. I have children, I have a full-time job, 

[00:51:35] Maya: Trauma. What's that? Yeah. Yeah.

[00:51:38] Laura: But I could not grieve him appropriately.

[00:51:40] It was a very unhealthy form of grief. Until I did that work and got to this place in my mind where I was like, wow, I needed to express that. I needed to say that I needed to think about this and work it out. So you just have to be intentional. You have to be willing. I tell my daughter all the time, you may need help.

[00:51:58] You may not be helpless. There's a big difference. And I didn't wanna sit here and be helpless anymore because I can't get my brother back. That's

[00:52:06] just not possible. But I can ask for help. And, asking for help will lead you through the journey and doing the work will help you get there in a positive way.

[00:52:15] Maya: I absolutely love that. Yeah. You can ask for help, but you can't be helpless. Oh, I get chills with that. That's a good one. That's a good 

[00:52:22] Laura: true. 

[00:52:24] Maya: I am getting a little, I'm getting chills about this part too, because I thank you for sharing about writing those notes, because I think it's so helpful.

[00:52:31] I did the same thing. I'm, again, I'm blown away that you're two years into your journey. You just shy. Of course, when we're recording this, but I did the same thing. I got stuck in anger as I've shared with you and everyone else. For me, I can't even imagine being in the place that you're at two years in, but I find it inspiring and I encourage all of you who are listening as well to take it as an inspiration and not as a rush or a slow down, depending on where you are in your grief journey.

[00:52:54] Everyone's different. But I wrote a letter to my mom too. Mine took me about four, I think it was four. Four maybe. Approaching five years before I did the show. I was still holding on a little bit to a little bit of anger from her. And boy did that pen just flow across the paper. It was quite a lengthy note.

[00:53:16] I was very, I was, that was, it was like the last residual anger that was there and I took it outside. So I love that you went to water because I love that we're giving options. 'cause I went to fire, so I went outside to our grill and I opened that grill up and I lit that baby up and it was several pages.

[00:53:34] And there's something that kind of leaves your body when you do that. It's like you release it. Because. It's not necessary to tell them all of those things. Maybe you feel like you need to, and when I say you guys listening, deal with it in the way that's healthy for you. But I love that you put yours underwater and it disintegrated and I lit mine on fire because there is a release that happens.

[00:53:57] I know. I felt that as well and it just, I started to feel like I propelled to the next moment in my grief journey after that and I didn't think I even realized how stuck I was on some of the things that came outta that pen is interesting right. That exercise.

[00:54:12] Laura: I didn't realize at all, and What you, what we have to realize, I think, and this is purely my opinion, is people often, and especially as women, if you think of yourself first, you're just selfish. Get out of your head. You're just selfish. But that was for me, that wasn't for my mom.

[00:54:27] I'm the one who has to live in my head and with my heart, and she, what purpose would it be to say all of these things in drag? She probably, I don't know if she would even remember a quarter of the things that I wrote about. So it was for me, and it wasn't selfish. It was so that I could move forward because I have to live with me, that was for me, that wasn't for her. So it wouldn't have served any purpose to send it to her or read it to her. I needed to get it out of my system and then put it in the past

[00:54:56] Maya: Beautifully said. I couldn't say it any better myself. Perfectly said. One more thing I want to talk about Laura before we talk about where to find more about alpha one and connect with you is as you've woven so beautifully throughout your story, Is your complicated dynamic with your family, right?

[00:55:13] Ben was really your kind of, your rock, your baby, your, all those things in the family, your connection in your family. And I connect with that part of your story and I'm sure a lot of you guys listening will connect with that too. And I've been asked many times to share stories on here about complicated family dynamics because we all know mine's very complicated, but yours is as well.

[00:55:32] But not everybody. It's interesting 'cause from being on TikTok lives and different things like that, some people are very comfortable sharing the family dynamics and a lot of people are not, but they're comfortable behind a screen being like, yes, I'm going through this. Help me share a story.

[00:55:47] So I really, again, commend you with how open you are and just able to share this. A question I get from a lot of people, so I wanna turn this over to you, is, what does, what does your mom think or what does your dad think or what does your family think about, they all have different opinions about this, but I feel like it's my, my, I owe this to myself, I owe it to my brother and I owe it to the story.

[00:56:12] And to anyone who needs help along this journey to share that, no, we're not some perfect family that, went and, scattered my brother's ashes. And I think there's power in being vulnerable and power in sharing that, but not everybody's able to do that. So how have you gotten to a place, Laura, where you're able to share and say, you know what?

[00:56:32] I had to put these boundaries up with my mom, my family, and get to a place where you're okay because this is very public where you're talking about this. Can you share that with us?

[00:56:43] Laura: Sure. I used to say with my family, set your expectations low because they will reach them. They're weird, but they're mine, and just relay it as lessons for me to learn as a mom, as to not do with my children. And I still think of that quite often, but it became even bigger than that because even as I, in this podcast and in with my friends, with my family, describe.

[00:57:06] The different relationships and dynamics in my family. They're all very individualized. Everybody is an individual. Everybody's different. We've, we talked before about how my mom wasn't my sister's mom. My mom wasn't Ben's mom. My mom wasn't my youngest and my oldest brother's mom. We all had very different experiences.

[00:57:25] So where my sister's perfectly comfortable defending her and being her best friend, that's great for her and her relationship with her mother. That's not my relationship with my mother or even my father. And I know who they are. I know what I can expect from them, but I have to decide how I was parented isn't how I'm going to be parenting.

[00:57:45] And through the work that I've done and only through the work that I've done, I decide what I carry forward with me. And that's the most powerful thing that I've taken out of therapy is when she said, I. You've put it all down, you've said it, you've written it, you've thought it, you've cried it, you've screamed it, you've laughed about it, you've put it all down.

[00:58:04] Now, what do you choose to carry forward with you? I'm not carrying that any of that forward with me anymore. It's too heavy. It's too painful. It, and I need to be in a place for myself, for my family, for Ben, for my life where it just is what it is. And I choose what I carry forward. So I'm not carrying any of that stuff forward anymore.

[00:58:23] I already had a little mini test where my mother had some surgery and needed someone to sit with her for a couple hours, three days in a row. And, being on summer vacation, they knew I was available and I went and I did it. And I didn't leave spiraling. I didn't leave crying or in a rage. It was all very polite with some TV watching, some conversation about work.

[00:58:43] And then I came home and went on with my day, and it was absolutely fine because I choose what I carry forward. I used to always think, Ugh, I can't say this, or I can't do that. I can't schedule this because I'm always the jerk and my, what their opinion of me is none of my business. I choose

[00:59:00] Maya: Oh, I love that one. That's a good one too.

[00:59:03] Laura: I stole that from the internet. I can't take credit for it. I stole it from someplace,

[00:59:08] Maya: I have a shirt that says that on there again, another chills moment. I literally have a shirt that I bought a few years ago in the middle of this, like the thick of it. When I was thinking that way too, Laura, and I was just like, and I found that quote.

[00:59:19] I was like, that's it. That's how I'm feeling right now.

[00:59:22] I love that.

[00:59:23] Laura: It's none of my business. I know how I feel about me. I know who I am. I know who my family is, and I'm gonna choose not to carry that opinion forward. I'm just not gonna do it anymore. So it's a very powerful place and that really helped me turn so many corners. So family dynamics are challenging and difficult and especially if, I would say Ben was my glue and the glue isn't technically here anymore, but he's always with me.

[00:59:47] I can still interact with my family in a very polite, positive way, and I'm just moving forward.

[00:59:53] Maya: Yeah. Yeah. And I think what you said about, I'm not going to carry this with me anymore. Carrying all that stuff with you, it's heavy. It's really heavy and the journey forward is exhausting when you're carrying it with you. And that's I love when we talk about, metaphors or things like that on the show and you can really envision it.

[01:00:10] 'cause I'm quite a visual person. And so when you share that, I just envision being held back when you're wanting to carry so much with you. You don't have to, you can take with you what you want. And I think what a great therapist. What great work you've done Laura. And I'm just blown away by your story.

[01:00:27] And I wanna thank you so much for sharing your story, Ben's story, so openly and vulnerably with us on the show. Can you tell us, we'll put this in the show notes, of course, but tell us where to find all the alpha one information that you were sharing earlier in the episode.

[01:00:41] Laura: My pleasure. Alpha one and it's the number one.org is their website for their foundation. And they have many things you can do. There's support groups, there's question and answer. There's a newsletter that's completely free that comes twice a month. There's walks and conferences and things like that if you wanna learn more.

[01:00:58] I, it's my pleasure to share his story. He would hate it, even though I think he liked some attention. He would not love all this attention, but I'm just determined to have Alpha one out there and his story out there, because if down to my last breath, he will not be forgotten. 

[01:01:15] Maya: I know that I believe that 150% and. You know what the story needs to be told for so many reasons and you have shared so much today on the episode and just so much about your journey, not just about Alpha One and Ben, but your connection and also the work that you've put in. And I just think it's inspiring and I hope it inspires you guys as well.

[01:01:38] Laura where is there any social media that you are comfortable connecting with people? I know that you're in some of our groups and stuff too, but anywhere specific, if anyone wants to reach out to you about questions about Alpha One.

[01:01:48] Laura: absolutely. You can feel free to add my email address to the show notes. That would be great. I would love to connect with Moore's siblings that need a connection or want a connection or, connect to this story. If it could help anybody. If I can help anybody I would love to do that.

[01:02:02] Please reach out.

[01:02:04] Maya: Awesome. I know you will. Thank you so much for being here today, Laura.

[01:02:07] Laura: Of course. Thank you so much for all that you do.

[01:02:09] Maya: Thank you. My pleasure. And thank you guys so much for listening to the Surviving Siblings Podcast.