Latest / Storied Account with Jen Jumba / Tiffany Graham Charkosky: Living Proof

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Tiffany Graham Charkosky: Living Proof · Storied Account with Jen Jumba

• Jennifer Jumba: This Story to Count with Jen Jumba. In conversations with writers, something magical happens. And as readers, we begin to see them as human beings and not just the name on the spine of a book. My hope is through these conversations, you learn about their crafts and them as a person, you'll become like me, fiercely loyal, want to read their current book, entire backlist, future book or any book they blurb. And when you see their name, you'll want to support them not only as the incredible storytellers, but also the thoughtful individuals you have come to know. My guest today is Tiffany Graham Tarkowski, and she writes about motherhood, medicine, and health. Her creative work explores the dynamics at work within human relationships and has been featured in outlets such as Oprah Daily, Literary Hub, Electric Literature, The Educated Patient, Gordon Square Review. Her essay, Year of the Rat was the Ohio pros contest winner in 2022. She is a frequent guest on podcasts, most notably sharing advice on writing memoir and exploring the hope and impact inherent in genetic testing. Tiffany lives with her husband, two sons and dog in Northeast Ohio. She spends her early mornings writing and weekends cheering for her sons on various sports fields across Ohio. She has over 20 years of experience working in the arts. She's currently my colleague. and is serving as the Director of Arts and Culture at Cleveland Public Library. And first of all, congratulations on your memoir, Living Proof, How Love Defied Genetic Legacy. So excited to have you here to talk about this book. Tiffany Graham Charkosky: Thanks. Thank you so much, Jen. I'm so honored to be a guest on your show today. Jennifer Jumba: you've been writing for years and this is your first published memoir. And it has an interesting story and an interesting background. So can you talk a little bit about where that idea of this is a story I want to share with everybody came from? Tiffany Graham Charkosky: would love to talk about that. I think a lot of times when people are writers, you're sort of always living in the world thinking about collecting images and stories and that you might someday use to write about. And at same time, I'm a huge reader ⁓ and I books for pretty much everything in my life. I'm kind of looking for other people's to sort of validate my own life existence. ⁓ And when I went through the process of genetic testing about 14 years ago, I looking for a book written by somebody who had been there, done that, gone through it, lived to and would sort of offer me ⁓ the hope solace that I think we look for in stories. And that book exist at the time that I was going through genetic testing. And so being the writer that I am and the curious person that I am, I sort of felt like maybe there was a story that I could tell here. However, I also think that when you're writing memoir, you need a little bit of distance from the immediate sort of events that you're writing your story about. And over a couple of years and as my journey through the genetic testing world and kind of preventative medical care life that I am living, was able to ⁓ that I had a unique perspective that I could offer and it just sort of kept drawing back to the page and trying to figure out what that story looked like, how I tell it in a way that could connect with readers. And so it a many years long process between thinking maybe I have a story ⁓ worth sharing ⁓ ⁓ building craft of the writing. ⁓ enough to feel like it was a story that I could actually put in a book and try to other people to check out. Jennifer Jumba: Well, Tiffany, you you touched on something earlier about us as readers and as a librarian trying to match with just the right book. And so there's a saying, you know, write the book you want to read. But as a librarian, when I'm standing and somebody's asking for a book recommendation, you know, we read for lots of reasons. You know, we read because we want to learn about something we read because we need to escape something. Oftentimes, and you touched on it earlier, we say we read so that we don't feel alone. feel some sense of solace, I believe, is what you said, and that somebody else has experienced similar. There's hope. There's sense of community that you find in a book. And I think it's brave and vulnerable of you to share a memoir. I mean, we all have stories ⁓ that live inside of ⁓ but taking that leap say, I'm going to share this story with everybody. I can tell you, I'm sure you have touched many, many people who've this book, who feel like, okay, she gets me. I've done this, I've experienced this and how that is. So can you talk a little bit about that? I almost think there's a before and an after moment. We talk about before COVID, after COVID, but there's the before the phone call from your dad. And then there's the after, can you talk a little bit about that phone call, which is kind of in the opening scenes of this book. Tiffany Graham Charkosky: Yeah, definitely not giving anything away because it happens at the very beginning of the book. my mother passed away when I was 11 years old. She had a horrific battle with colon cancer. And think for anybody who's lost a parent at any stage of your life, it's terrible. And for people who, ⁓ in my losing that parent as a child, it's sort of like the defining ⁓ piece of childhood and the rest of your life. And so I spent years and years sort of ⁓ to prove to myself and to my entire family that I was good. ⁓ survived this. ⁓ wasn't broken by this loss and that I think I did a lot of, I focused a of my energy in like academic achievements ⁓ and trying kind prove to myself and the people in my life that like, I was I'd it if you will. And so was in late and I was married ⁓ husband, Brian, who I'm still to. We had a two-year-old son at the time. And I felt like when the phone rang ⁓ and ⁓ I got this news from dad he said, your uncle had some testing before he passed away. He... also had colon cancer and tipped off a team of geneticists, who him to pursue testing. And my was, well, you're calling me. Of course, you have whatever you're telling me I need to know, ⁓ going back to like a reader and an information collecting kind of person. But what that information for me was that the story I had told myself about myself was no longer true. I hadn't Jennifer Jumba: Mm-hmm. Tiffany Graham Charkosky: survived the hardest thing. I had a new hard thing in my future that I didn't know if I was strong enough to go through and how that new information and future would change my family. It really highlighted a lot of unaddressed trauma, know, from my childhood. think everybody from the outside probably looked at me and thought, ⁓ she's doing great. Like she went to this great college and she did really well in high school and has this job that she loves and this husband that she loves. She has a beautiful child. And I had all of these things and it felt like worked really hard to like build this life that I wanted. And then it felt to me like it could all be sort of like blown away. in a storm or something, like it was a sandcastle that could just wash away. the before and the after was, you good, you've made it, and now you just have to hold on to what you have. And then became, well, now I have to figure out sort of how to not put my family through the exact same experience that I had gone through as a child. Jennifer Jumba: Yeah, I mean, there's a certain power with having knowledge, right? and we make decisions based on the information we have at the time. ⁓ And hindsight is going to be 20-20 when you look back. But I can't imagine phone call. And I think about the gazillions of emotions that had to have been going through you. And, they're not like the customer service calls where they're dealt with in the order in which they're received. I mean, they're kind of bouncing all over the place. Tiffany Graham Charkosky: Yeah. Jennifer Jumba: and what a tough And meanwhile, it's like in the middle of dinner, right? So then you have to go back and, ⁓ and, you've got who's, two and, know, has to finish his dinner and you've got to, give them a tub and, read bedtime stories and put them to bed and then try to sit with this and figure out, okay, what next? ⁓ Tiffany Graham Charkosky: Yes. Mm-hmm. So was huge. I think, you know, the jumble of was also, you know, I have two siblings. I knew that my dad was going to be calling them. I'm the oldest sibling. So my dad called me first. And ⁓ I think my was wrestling with this information. What do I do with this? And how do I help my go through this? And he'd, of course, lost. you know, his wife and had to us on his own. He was in his ⁓ when my mom passed away. So he was a young ⁓ with three children. so I'm thinking about him. I'm thinking about my son. I'm thinking about my husband. I'm thinking about myself ⁓ and fear was I already? know, growing cancer. I was the age that my mom was when she was very sick when I received that phone call. So this feeling that I was like ticking time bomb, I think, is ⁓ really, what was really set off in me. And then about a after that phone call, I discovered that I was also pregnant with my second child. And so ⁓ there ⁓ kind the... pregnancy hormones, but there's also with the type of genetic mutation that I have, there's a lot of questions around when are you done having children? There's a very high risk of uterine cancer and so this sort of whole domino effect of like will we have more children? Won't we have more children? And then this overwhelming sense of gratitude that I was already pregnant and didn't actually need to make that decision. So I think it was a huge Jennifer Jumba: Great. Tiffany Graham Charkosky: huge roller coaster of emotions and will I get tested and if I get tested, what do I need to have in place in order for that to happen and how do I talk about this with the rest of my family and know there was just sort of the whole, it like a Pandora's box of it had been ⁓ opened just sort of a cascade of things to come afterwards. ⁓ Jennifer Jumba: Right. And I think about the fact, you know, I'm still sorry that you lost your mom. cause she sounds like she was an amazing person. And at the age of 11, that coming of age, just absolutely ⁓ but you a little bit about being focused on achievement, getting good grades, getting into, a good college, getting your master's degree, all of those things and still not like that had, or still feeling you had to prove something. Tiffany Graham Charkosky: Thank you. Jennifer Jumba: ⁓ I you proved it, ⁓ because were living an authentic life and whether or not you that maybe it was the fact that you had an opportunity to do things that your mom sadly did not and honoring in each of those decisions to live your best life, and meet this fabulous guy and have two fabulous boys with him and a meaningful career. ⁓ I mean, art has always been part of your life, which is really kind of and seeing that expressed, through words on a page and through the work that you're doing now and have done. but I'm just, um, I'm a gog when you mentioned in the book that it's the MSH six gene. And I didn't realize this, but as human beings, have 20,000 sets of genes. Tiffany Graham Charkosky: Yeah. Jennifer Jumba: And I'm thinking there's one like 19,999 be like, dude, get out, right? Or ⁓ that. I am amazed and just like medicine, I mean, the more we know and the more we study, the more we learn and having feel unsettled, not knowing what's coming. mean, none of us in this life know what's coming, but to know that your risk is dramatically increased has to a bit of a challenge. And yet you focused Tiffany Graham Charkosky: Thank you. Jennifer Jumba: so positively on your family and these boys and your siblings and that bond you have with them. mean, they sound amazing. ⁓ Tiffany Graham Charkosky: Yeah, they are amazing. yes, so I a mutation on my one of my cancer suppressor genes. And for anybody in kind of diving deeper into the genetic rabbit hole, I kind of it as like BRCA, ⁓ but affecting your and more like gastrointestinal tract. And if you're a woman, your uterus and your ovaries. So it's, they're in the same kind of family, they're in the same kind of family of hereditary cancer genes. And it basically means your body, all of our bodies are making, our cells reproducing all the time. Sometimes a cell go rogue and most people's bodies of fix it. They override it ⁓ and the operating system working. It basically means that in, Jennifer Jumba: below the belt, kind of, yeah. Tiffany Graham Charkosky: people who have one of the hereditary cancer genes, particular gene is not fixing the problem that the system is making. So it just keeps reproducing bad copies of ⁓ So find it helpful to talk about it in those kinds of terms because it ⁓ depersonalizes the information means to me. ⁓ It it from you are broken and you always been broken to there's a part in my body that isn't working the way that it's supposed to. And I feel like for a lot of people who have medical problems, I think especially women, feel a sense of shame when our body doesn't do what it's supposed to do. ⁓ breastfeeding is hard for you or getting pregnant is hard for you or have abnormal pap smear or ⁓ whatever it like. I think all of those things are these it makes you feel like did something wrong. There is something wrong with me. I am broken. And I think we write these stories as women about our bodies and we want them to be, we try to control them with food, with exercise, with birth with, yes, all these things. Yes, exactly. And so when that Jennifer Jumba: Yes. makeup, ⁓ a little bit vain. Tiffany Graham Charkosky: The whole world is telling us like the body that you're in is so valuable or your value feels connected to your physical appearance or your body. When your body is the thing that's kind of turning against you, think it's so hard to trust your body again. And feel like the more we can just talk about these things as humans and as women, ⁓ the we can like remove some of the shame that we feel when our body isn't doing what it's supposed to do. Jennifer Jumba: think we're now in age where, my mom and certainly my never talked about perimenopause or menopause. And there has been this resurgence lately in the last few years of us talking about things, about the things that are happening to our body and trying to understand them. Now, most of us know that this is like a temporary thing, the hot flashes or the brain fog or the night sweats or any of those types of things. for you who's living with the rogue gene that is not behaving properly, how is it that you have a cold or you have a cramp and your brain doesn't go, my gosh, this is the really bad rogue gene versus this is just a cramp because ran or because I ate something that didn't agree with me or this is just a cold and Tiffany Graham Charkosky: Hmm. Jennifer Jumba: did your brain separate those things or it? Tiffany Graham Charkosky: Sometimes it does it better than others. there are, there's a couple scenes I talk about in the book where like I had a optical migraine, ⁓ is a where your vision like looks like a piece of kaleidoscope ⁓ or a broken mirror. And ⁓ basically I was dying. ⁓ I was I have a brain tumor. This is it. I'm done for. Jennifer Jumba: Mm-hmm. Tiffany Graham Charkosky: My husband took me to the emergency room. We paid $500 for me to go to the emergency room. And in 30 to 45 minutes, it took for them to see me. My had come back. I explained had happened. And they were like, did you Google ⁓ optical, ocular ocular migraine. And I was like, no, I couldn't read anything. And they were like, ⁓ you just had like the most textbook example of this ⁓ very common They're like, ⁓ go home. headache will coming in about an hour. Go to sleep. And I mean, I escalated like immediately to I'm dying. I also, when I was, ⁓ was a point, ⁓ is actually not in the book, but ⁓ winter I was like shoveling snow and I was so sore it that I like ⁓ ended going to get an ultrasound 100 % certain that like my kidneys were like, you know, was dying of renal failure or something. ⁓ and they took an ultrasound and they're like, there's nothing, you're fine. And I was like, this is so scary. A couple of days later, it goes away. A month later, it snows again. I shovel all the snow. I get the same feeling. And I'm like, that was the of shoveling snow. So I that a lot of times for me when it's like something that I haven't experienced before, I like go to like worst case scenario. Once it's something I've had happen a couple of times, ⁓ I can say, this is like a regular thing that is cancer. Luckily, the common is usually not a sign of cancer. So that kind of thing doesn't freak me out. if there was anything kind of muscular, skeletal, it definitely takes me a little time. And I certainly, I think, have really good relationships with my medical providers. trying to kind of manage that, not wanting to be a hypochondriac, but also not wanting to like turn a blind eye to something that should have been caught early. Jennifer Jumba: Right. I think that's the duality that you're, that you're capturing is that, knowing your body well enough to know when something is amiss and having to be an advocate to make sure so that, we always hear like when you catch things early, the outcomes are better. So ⁓ making sure you go and you get that, test or that reassurance, documentation that things are okay. And at the same time, not turning that blind eye and saying, ⁓ it's probably just. ⁓ Tiffany Graham Charkosky: Mm-hmm. Mm-hmm. Jennifer Jumba: You know, I pulled a muscle while I was shoveling snow type of thing. And living with that, have to imagine is a bit challenging. And then I'm thinking about the fact that on top of all of this, you're pregnant. Tiffany Graham Charkosky: Mm-hmm. Yes. Jennifer Jumba: And I have to say, for those listening, think my favorite scene in the book, is that you're sick. mean, you're nauseous, you're puking. A lot of times happens when people are pregnant. And you're in the bathroom, and underneath the door come these little like matchbox race cars. And then Ben, who's two, says, Mom, I have no idea how they gotten here and I'm just going to sit here with you. So nobody else comes in. And I just think it's, it's one of those great scenes that humanizes everything that what you do with this memoir is not only introduce us to your journey of, being, somebody who's with having this gene, but also pregnant and raising a family, you you've humanized it. So it's not this textbook clinical. ⁓ that this happened and then I had this test and then I had this test. mean, you're, capturing those moments of motherhood, which even if you were just sick because you ate something funny, that scene is just so poignant and tender, you know? So. Tiffany Graham Charkosky: Thank you. you. I feel one of the things that I struggled with in writing this memoir was this feeling that I didn't have a medical background. I didn't have a genetic testing background. And I sometimes it can feel like if you're writing about your own medical experience as just a regular person that you don't have the to do that. And so one of the things I really worked on and wrestled with with myself and frankly pep talked myself was saying most people who have a medical thing happen to them not medical professionals and this is a medical memoir but it's jargony it's not about ⁓ the medical not attempting be like a roadmap for how you do this it's not Jennifer Jumba: Great. Tiffany Graham Charkosky: like a clinical guidebook, it's really an exploration of this of medical information kind of does in your brain and your and in the relationships of the people who are going through with you. And I hope that that's that like resonates whether it's not, whether you have a genetic or not, but just going kind of through a medical thing, period. So for me to tell myself, actually being not being a medical professional actually makes you uniquely qualified to tell this story because I will tell it in a way that could make this medical information understandable to me and I hope that that translates to the readers as well. Jennifer Jumba: Absolutely, it did. think you can, lack of a better term, substitute the gene with other illness that somebody experiences and knows because when you're sick with something, all you hear is that medical jargon from your medical team and trust your medical team, but then there's the whole part of you that is human and absolutely uniquely qualified to talk about that from that perspective. That's what resonates with people. You know, facts and the figures are great, but what people retain is the story that's around those facts and figures. So now I know I have 20,000 genes and hope they're all behaving at this moment. But at the same time, I understand, and I think, ⁓ you talked a little bit before about this is, you know, how well you handle it and whether it's a compartmentalization. almost, you you talked before about, everybody thought you were fine, masking and, like doing really well in athletics and doing really well in art and doing really well at school and family and all those things, but like underneath. I think that's all of us have something underneath what present to the world. And so able to connect somebody who's that into words is such a gift. Tiffany Graham Charkosky: Thank you. Thank you. That means a lot to hear. And met me about a year after I had had my oophorectomy, which is the medical term for had my ovaries removed, which was a surgical menopause. you met me kind of a year after ⁓ finished the preventative surgery stage of this journey, which was a 10 year process. So I feel like one of things that I love about memoir ⁓ in general is I love the way that it constantly reminds me that every single person I'm interacting with those private things that don't know about ⁓ and tries how it makes me want to give everybody like the dignity and the respect of like assuming that they're trying their best and I think it's made me pretty good at like ⁓ not taking a away kind of snarky comment. super personal, you know, in a lot of situations. So I can usually do a pretty good job of telling, reminding myself that is something and we all to kind of operate in this world at a professional level or in a social level ⁓ without dumping burden of our experiences on people at every turn. But sort of understanding that they're sort of the public you that's out in the world and then the private self. but we're all living as like the amalgamation of these two. so it helps me to remember that ⁓ gone through something ⁓ so has everybody else that I'm interacting with every day. Jennifer Jumba: I think you caught on, mentioned something that I think is so important about giving people the dignity and the respect, to know even if they don't say what's going on, just to kind of give people that little bit of grace. And I think that is, it's a valuable lesson. think that's why, I think that's why we get along. It's that sense of, of compassion that you offer, that sense of, of understanding and such an important thing. And since this book came out, in the fall. What has been the response? Have you heard from readers who are like, ⁓ my goodness, thank you so much for writing that or found a different sense of community with people who struggling with, ⁓ I get the test? Do I not get the test? I mean, you also have two siblings, right? And that they had to make that decision independent of the one you made. Tiffany Graham Charkosky: so writing the book has been, one hand it's been like a life-changing experience to have the story out in the world. On the hand, my daily life looks pretty much the same as it did before the book came out. You know, I'm still waking up early to write, I'm still at the same I still, you know, I'm chasing after my children and driving them around to various things. the flip side to all of that is that I have made so many connections with readers that are just, it's you write a book. Like I've gotten messages from people on the opposite side of the country saying, thank for writing this story. You put into feelings that I have been carrying for years. You make me feel seen. And that is so. validating. And when I wrote the book, my author's note at the beginning, I say that I felt so alone my journey and that I hoped that this book would ⁓ other people feel less alone in this process and either as like ⁓ patient themselves or you're you know a friend or a loved one of somebody who's going through this to help them kind of understand it. So that of feedback has been incredible. The other piece is that in the years since I went through genetic testing, has been so much of a community built around people who are living with these hereditary cancer risks. So I've been like a couple podcasts with other women who are called pre-vivors, which is what I am a is somebody who has a hereditary ⁓ disposition to an but is undergoing screenings and so on to help them not become a survivor of that illness. Yes, ⁓ I made these incredible connections with other pre-vivors and whether they living with risk of something neurological ⁓ or something to cancer. Jennifer Jumba: I was going to ask you about that term. Yeah. So thank you. Tiffany Graham Charkosky: This feeling that I have found this new group of my people that I didn't know I part of before has been so And so a shorthand. just sort of instantly know somebody when you've gone through these similar experiences. And the thing that been really wonderful for me in making those connections is ⁓ how many of those are similar to me in that the information didn't just change their health output, know, health outlook on life. fundamentally changes like who you are how you live your life. Like so of are now trying to be like advocates for these hereditary illnesses or like are undergoing career paths where they're like shifting what they'd been doing. ⁓ there's a number of people who've like started podcasts ⁓ ⁓ books. And so for me, I've always worked in the arts and this is something that I struggle with a little bit in the, in the book a little bit, but it's actually something that's bigger in my off the page, off the living proof page life is always like hidden my behind my job. And I've like helped of artists like implement these projects and programs I've always worked in the arts and this is something I with a little bit in the, in the book a little bit, but it's actually something that's bigger in my off the page, off the living proof page ⁓ life is I've always ⁓ like hidden my creativity behind my job. And I've like helped hundreds of artists ⁓ implement these projects programs and I always think that all these artists believed in themselves more than I believed in me. And so I think that what going through genetic testing has really done for me is say you are a creative person and you do have these creative ambitions and it's okay to do both. You don't have to sort of live in service to other people's creative ⁓ goals, I always think that all these artists believed in themselves more than I believed in me. And so think that what going through genetic testing ⁓ really done for me is say you are a creative person and you do have these creative and ⁓ it's to do both. You don't have to sort of live in service to other people's creative goals, but you can pursue your own. And so I feel like those are the types of things that have been really ⁓ kind of life-changing for me in the sense of having this book come out. And so I feel like those are the types of things that have been really kind of life-changing for me in the sense of having this book come out. Is this validation a way that all the hours and hours and hours, tens of thousands of hours probably that I spent ⁓ writing, it's this book or short stories or other essays, but that there was. there's an audience for those things and wanting to kind of keep doing it, like not just be done with this one book, but like unlocked that I have all these other stories that I wanna make sure I'm telling too. ⁓ so that's really, I think one of the big takeaways for me is like, ⁓ it you to like ⁓ any crisis, I think makes you take an assessment of your life and say, am I the life that I wanna be living? Am I treating the way I wanna be treated? ⁓ and they want to be treated like, am I the person I want to be? And I think that feel ⁓ sort of going through genetic testing and kind of investing in my own creative pursuits, you know, it makes me feel like, yes, I am getting and closer to being ⁓ the best version of myself who I want to be. Jennifer Jumba: say you're an absolutely amazing person ⁓ and truly best self. I would imagine it provides that sense of clarity as well as a sense of urgency that all of us, whoever we are, have one life. And ⁓ I know switched careers, not because of health crisis, but just because I got to the point where I was like, hey, this isn't what I doing and this is what I do enjoy and finding a way through that. Tiffany Graham Charkosky: Thank you. Mm-hmm. Jennifer Jumba: Having that also, I think is an important part. other thing that I was struck by in your book and your memoir is just how multifaceted is. So it's not just, ⁓ and I need elude it to this earlier, it's not just happening to you, but it's happening to family, ⁓ to your to your to your husband, and one son and soon to be son, and trying to balance all of that. how did you, how did you do that? I mean, I know you talk in the book about, Brian just watching things, when there was a moment you were in the hospital and he stayed awake, just watching monitor to make sure everything was okay. And that, that sense of vigilance, can you talk a little bit about, you know, the impact it has. Tiffany Graham Charkosky: Yes. Yeah, I mean, goodness. So I was the first one in my family to meet with the geneticist and a genetic counselor to sort of to pursue this testing. And that came this desire to of demystify that process for the rest of my family. And even while was going through the testing and while it was ⁓ so scary to about what the outcome could be, I did feel like it would be worth it. It was worth the fear to face this head on. Like putting my head in sand was not an option that I was willing to ⁓ It felt too risky. So I was in my late 20s. I'd been a couple years at this point. My brother is two years younger than me and my sister is five years younger than me. So we were in these like really different places ⁓ in our life ⁓ I was my brother was brand newly married when we got the call from my dad. My sister was like dating her now but didn't know that at the time, you know. So when you're looking at these of information, you have to think about like, what does this mean for me How does this impact my relationship? You know, we all have to sort of navigate these things. And so. I definitely feel like my brother and sister and I each took our own path to testing. all did, we did end up pursuing genetic testing, but kind of on our own timeframes and ways that really authentic to who each of us are as individuals. Like I was like, I to tell people and I need to like make sure they know what's on. And my brother is like a lot more private. He just kind of like went and did his thing and told us when it was over. And my sister needed like a little bit more time to. Jennifer Jumba: Thank Tiffany Graham Charkosky: process and kind of think about what it meant within the context of her own relationship. My grandmother up just to see she had passed it on. I think she needed to know was this me or not. And was not my grandmother. was my grandfather who had passed away actually one year before my mom died. And my mom was one of children and As far as I know, one her two siblings who still alive have tested. The one who has tested is negative and the other one I'm hoping is negative because he hasn't been tested. Everybody just kind of makes or hasn't been tested as far as I know. So I feel like makes these decisions for based on ⁓ the of information that can handle and what they can do for themselves. The other thing I think about any kind of illness, especially these hereditary illnesses, is that my family, by the time my uncle died, my grandma had lost her husband. One year later, she lost my mom. My mom was 30. She's the second oldest, which meant two of her siblings lost their sister in their 20s. They lost their second brother in their late 30s and early 40s. my grandma lost two children and a husband and then was kind of looking at like, well, what my grandchildren? so I like just these layers of grief that families work through. And I think part of I was fearful of with my family was that, we like strong enough as a family to handle this information? And ⁓ what if somebody else sick? And it just... For me, I felt like needed to kind of protect my core family, know, the family I was building and raising, ⁓ also this like extended family who I just watched go through so ⁓ And go that as deeply in ⁓ living proof that's not my story. ⁓ know, that's their experiences are my experiences. And so, I think the other thing when you're writing memoirs, you have to think a lot about like, what information do I have the right to be sharing and whose stories am I sharing? And made a choice to only share medical about my siblings when it something important to do with my response to it. Not just sort of gratuitously ⁓ sharing all this information, but that it was like, triggering certain responses, mostly emotional responses, in how I was kind of processing what this looked like for all of us. Jennifer Jumba: Yeah, hate to say characters in a book, but these are family members. it's, ⁓ there's family members who, know, who I truly enjoy. And one of them ⁓ your uncle Eddie. talk a little bit about him. I mean, you spent like, a couple of weeks in the summer in Charlottesville with him and what that was like, and some good memories of him. Tiffany Graham Charkosky: you Yeah, so my dad is one of seven children. He's the middle of seven and my mom is one of four my godparents were both of their youngest siblings. So my aunt my side and my uncle on my dad's side, they were 16 when I was born. So they were like these like young, fun... ⁓ aunts and uncles. Like we didn't even call them like aunt and uncle. Like we just called them by their first names because they felt closer than like an aunt or an uncle in some other circumstances. my uncle Eddie and my aunt I was like the flower girl in their wedding. They had baby, they had a the spring before my mom passed away. They got married a couple years earlier, they had a baby, and then they moved away for my uncle's job. So they had lived in Cleveland, then they moved away. at some point, my family decided that I should go away for a couple weeks, the summer before my mom passed away, and help them with baby. And I know if it was like, really, like we need to help, ⁓ they really help with the baby, or if it was just like, let's switch things up. I don't know where it came from. ⁓ But I went to Charlottesville, Virginia with them for two weeks. I played with my cousin. I hung out with my uncle who, he was like the quarterback of the high school football team. The high school that my son goes to now, my uncle was like the quarterback of in the 80s. And then he was the quarterback of his football team. And he was just this fun, lively guy. He worked a lot though, like he had the kind of job where like he moved all over the country for a number of years for his job. I spent a lot of time with his wife, my aunt, but we were together, we would like listen to music and I always wanted him to like think that I was cool. And so there's scene in the book where we're listening to Pearl Jam and I had like just finished fifth grade. I was heading into sixth grade and. ⁓ This was when Pearl Jam's first album had come out the previous year. I knew a couple of the radio songs, but my uncle bought the cassette tape and he's like, you're gonna love them and pretended know the music better than I did. And ⁓ it's this really fun escape hatch, I think, from the life that I was in, which was watching my get kind of progressively more and more ill. And so I went away for two weeks and then after two weeks, they like drove me back up to Cleveland and of re-entered my real life at that point. But I think it, ⁓ me, really showed the way that different family members sort of provided outlets and support over the years. So yeah, it was just this weird little getaway and... I wish I could say that we still have that closeness now, but life and time has changed and it's not like that anymore. I miss it and I wish it still was. Jennifer Jumba: Yeah, I just think it also may have like just you a sense of self. ⁓ because mom was sick when you were such a young age that ⁓ that's was a kind of defined you, that you had ⁓ the sick mom who, know, was so sick she wasn't able to walk when he would go to the rib burn off rate or watching out for your siblings being the oldest that sense of responsibility to make sure they're okay, make sure that you're dad is okay and just to go for a couple weeks and just be you, just be Tiffany and ⁓ to Pearl Jam and hanging out with a new ⁓ cousin. It was a bit of a gift to kind of restore that sense of self because what you came back to just have the happy ending that we all want for you. Tiffany Graham Charkosky: Mm-hmm. ⁓ thank you. Thank you for that. think that that was partly why like ⁓ Virginia scenes were ones that, you know, they were ⁓ of the book from like the very, very beginning of it. Like they did not come later. They were kind core to it because it seemed like in the midst of having a sick mother, like you still are a kid who wants to like have fun and like hang out with your friends and be yourself. I, for me, it felt like kind of pairing that, like showing that kind of the multiple versions of childhood felt really important. And that I was just a kid too, you know, I went horseback riding and ⁓ so yeah, you know, had some fun. Jennifer Jumba: I can't imagine. Right. I can't imagine handling that now as an adult, let alone, being you were 11 when she passed away, but she got sick before that. just being that young. I mean, I can't imagine, and you kind of rationalizing and I read a ton and I'm always struck by beautiful passages and beautiful language in the book. And so there are a couple that that you wrote that I just wanna highlight when you're talking about after getting the results of your genetic testing, and you think about it in relation to your core family, to your husband and to Ben, Matchbox car under the door. ⁓ You write a line that says, would become a whisper inside my son, a screaming void, a shadow figure visiting his dreams, a voice he forgets, an extinction in his ecosystem. Tiffany Graham Charkosky: You Jennifer Jumba: beautifully capturing something that is so. hard, sad, tragic. are these little phrases that I down, I keep in a book, but sometimes just want to write down on a piece of paper and tuck it in my pocket and then pull it out and read it all over for everybody listening, when read this book, there are several of these moments that will hit you. can't see this is a podcast, ⁓ but right here, knock you for loop. beautiful expressions in something that you be incredibly sad about, incredibly angry about, but you're choosing, while those I'm sure are still there, you're choosing hope and you're choosing live in the moment and show up and there for your voice. yeah, ⁓ just, there's so many I have like a whole page here, but I just think Tiffany Graham Charkosky: Thank you. you. Jennifer Jumba: Even grief seemed to exist on a loop circling back to remind me of how little time had passed. And you alluded to that earlier in our discussion, just the layers of grief, you know, the grief of, know, did I, did I pass this on, from your grandmother's perspective to lose a husband and two children, and then wondering what the continuation of the family does to grandkids and great ⁓ grandkids. Tiffany Graham Charkosky: Yeah, I think for me, I am like you, I am a huge reader and I love books that are beautifully written. I love getting lost inside like turns a phrase that like I'm like, oh, I can't believe I never thought of it that way or that's the most perfect way to describe this. And so I think when it came time to be writing this story, it felt really important to me that I tried to take the hardest thing I'd ever gone through, but make it as beautifully told as I possibly could. so it was really like sentence for me was something that felt like I needed make sure I was saying it just the way that wanted to. And that was actually of the ⁓ most amazing gifts of able to work with a publisher and work with like a professional editor who was able to help me make these passages sound even more like what I had hoped that they would sound like. And I always tell, you know, my friends who are working on writing or whatever is that it's a real gift to work with any editor who really understands what you're trying to do and is making sure that you're, you know, crystallizing this language in a way that feels exactly like how you wish it had sounded in the first place. I think that it's something you can only do, you know, through the act of like dozens and dozens of rewrites of something. ⁓ Jennifer Jumba: And that's that's the advice I think I typically hear writers say to people who are currently writing or aspiring is that you write every day. it's no different than saying I'm gonna run a marathon you don't just show up the day of the marathon and start running I mean you are starting. And doing it something consistently showing up every day and some days you know you feel great and other days not so much so your process in the morning you want to those five a.m. writing people like you're writing before the sun gets up. Tiffany Graham Charkosky: Okay, fine, 5.30. And I am because I do my best work in the morning. I've always been somebody who, if my brain needs to do something hard, it needs to come in the early part of the day. And I have sons ⁓ and I have full-time job. And I feel like wake up at, my goes off at 5.35. I'm downstairs, you know, by like 5.50. ⁓ Jennifer Jumba: Okay, sleep sin, slacker. Tiffany Graham Charkosky: and my coffee going. And I until about seven. I write until the rest of the house starts to up and we have to get ready for school and work and everything else. So that's the that works best for me. I think there's a lot of writers whose work I love who don't write every day. They have different processes than I have. for me, I have found it's kind of amazing what an hour to an hour a half of consistent effort. five to seven days a week can bring to you. So yes, I do write early and I better the rest of my life when I've done it. I'm more creative at I'm more patient with my kids, I feel like when the is going well, everything else in my life feels like it's going a little bit better too. And I no longer have this that I've like, pushed pause or put away creative Tiffany in service of other people, I feel like I'm giving myself that space to just play with words. You know, it's fun. ⁓ think a lot of writers talk about how hard writing is, and writing is hard, ⁓ writing is also fun. ⁓ like that hour flies by for me every day. It's like a total kind of flow state thing. And ⁓ for me, I like editing. lot better than I like new things. So the generative stage is always the hardest and I'll be like 300 words a day is a really productive writing day for me of new words. I a lot of writers who are like 1,000 words, 2,000 words, that's not how it goes for me. But when think of a book being, you know, my book is 65,000 words. of that being written in 300 words a day. Like how long that to do, you know, that's what it that's what it is though. And so ⁓ Jennifer Jumba: Right. Tiffany Graham Charkosky: To me, ⁓ consistency is important and that also makes it, you know, when it's time to write shorter pieces. I wrote a ton of companion essays kind of go out when Living Proof was launched. ⁓ It all the rest of those muscles were like fired up ready to go. It meant like when I had these other things to be writing, I can kind just sit down and treat it like a creative job. Just do, do, do, I'm gonna get this thing done. it's really... like it's really wonderful. I love doing it. And it's the same way I write when I have to write at work. Set a timer, tell myself you're writing this grant proposal today or you're writing this description. And it's just, think muscles that you're using all the time are kind of happy when you use them. ⁓ there for you and they're ready to work the more consistently you put them to work. And I think that's true of running or exercise or creative work too. Jennifer Jumba: Agreed. Yeah, no, I row and I row in the mornings myself because I have an erg, a rowing machine. But to your point, the days that I get up when it's still quiet and it's still kind of dark outside and I row, my days are so much better. I am much more patient. You know, the ideas are better, all of those kinds of things. So what's your advice? for writers to discern what their process looks like since every writer is kind of different some morning, some evening. How do you discern what is, you like smorgasbord it and you're like, okay, one day I'm gonna write in the morning, one day I'm gonna write at night, one day I'm gonna write in the car while I'm waiting for my sons at school. How does that? Tiffany Graham Charkosky: I think my advice would be to ⁓ what right to you ⁓ and really gentle with yourself. I think something for a lot of writers who are maybe getting back to writing or feel like they've, I think a of struggle with feeling like I'm somebody who used to write. And so you spend a of time like fighting with yourself about like, I don't, I'm not showing up to the page. I'm bad at this. I shouldn't be doing this. me, when I started seriously getting into having a writing habit, it was about six years ago. It was actually during COVID. It was Tiffany, you've been working on this stuff. And if you're able to find the time to find a consistent writing thing during a time when the entire world is shut down, then this isn't a thing that you're serious about. ⁓ That was the of pep talk I had to say myself. ⁓ Jennifer Jumba: Wow, do not give me a pep talk. Tiffany Graham Charkosky: was what I did. But I said that to myself ⁓ then I was so scared showing up and what I might say and it's scary to see how bad first drafts are. ⁓ How first drafts are. So ⁓ would downstairs. I had my I lit a candle and I said, okay, you are just here. You're having fun. It was like my writing self and like this creative self needed to become friends again and had to trust each other again. So slow going. so I think what I would say to any writer is just like be kind to yourself, couple with something that you enjoy. Like I have a friend who likes to go write at a bar. She will go to a bar, get a glass of wine and sit and write. And so it's like pair. Jennifer Jumba: ⁓ my gosh, I'm the kind of reader that likes to go to a bar and get a glass of wine and read a book. Tiffany Graham Charkosky: Okay, yes. I think there's like all these different ways that you can do it. And then the other thing for me is I have sons who play a million hours of sports a week. And one of my sons was in this competitive league and like two nights a week, we were driving, know, 30 minutes away to take him to his practice. And then a lot of parents like ⁓ sit around and scroll their phones or make their Costco run or chat with each other. I sat there with my laptop and I was like the anti-social one who was like, I'm writing a book, like I need to keep doing this. So I think I was also like just kind of finding the time and myself look forward to the time that I was putting for this. Like ⁓ you're go to the baseball thing and you're gonna have a, you know, fizzy water, whatever, and you're just gonna write for a couple, I would get excited about it. So I would say find something that you can look forward to doing, make it like I showed up and I'm feeling good, and congratulate yourself and feel proud of any progress that you can make. I would never say it has to be any one way, but find the way that works for you and nice to yourself as you fumble through it. Mm-hmm, yes. ⁓ Mm-hmm. Jennifer Jumba: And that's come a lot of that comes through trial and error, right? I would imagine. ⁓ and habit stacking, I think that's great. Doing it with something that you enjoy makes a whole lot of sense. I did. Yes. Cause I have done it. so certainly, certainly appreciate that. I'm thinking back to something as, as we're wrapping up that you started with at the beginning and you said, you know, you thought you had gone through the worst thing in your life with losing your mom and then questioned your strength. Tiffany Graham Charkosky: I like that you noted the habit stacking. Yes, yes. Jennifer Jumba: moving forward to the next hardest thing. when he said that I couldn't help but think about Kara Larson, who's the coach ⁓ the women's ⁓ basketball team. And she has this little pep talk that she gives her that I have saved because I must watch it at least once a week. I think if it were the old cassette tape, it would have worn out by now. But she talks about, saying, well, once I get through this, then it'll get easier. You know, once I get through this semester at school, it'll get easier. Once I get through this project at work, it'll get easier. Once I get through this and she said, life doesn't get easier. What happens is you learn to handle hard better. And so when you were talking about that earlier, that's all I could think of is that that experience with your mom was hard. experience that you're living now with testing positive for that particular gene the genetic testing and the things that you're doing to be a provider, you're just handling hard better. So certainly strong enough and certainly living up to the title of the book, which is living proof that so. ⁓ Tiffany Graham Charkosky: Awesome. Thank you so much for sharing that, Jen. means a lot to me, and I think I had never really thought of it in that perspective, from that perspective before. So I do appreciate that. I really appreciate you sharing that with me. Thank you. Jennifer Jumba: I'll send you the clip when we're done, because it's amazing. She talks about people just sitting around waiting for the easy bus, and that never really happens. But ⁓ you want to do better, you ⁓ learn to handle hard better. ⁓ at the same time, it also doesn't make us rush through life, like, once I get this done. Because there's always going to be something else, whether it's a work stress or one of your son's a baseball tournament that goes longer and then gets rained out. Tiffany Graham Charkosky: Mm-hmm. Jennifer Jumba: there's always going to be something and it's just learning just like you figured out your writing discipline, that you do best in the morning, or where have pockets of time. I would say the same that sense of agency, that you have is, ⁓ is so valuable as an example, people reading this book. So, ⁓ yeah, I would spend more time talking you, Tiffany, but I know you're busy, very busy, very important. So. Tiffany Graham Charkosky: Mm-hmm. Mm-hmm. Yep. Thank you. Jennifer Jumba: This is on base stories and five questions, right? you mentioned in the book that you can't imagine not living near water. If you had to choose to not near water would be mountains or a big city. Tiffany Graham Charkosky: So are you, Jen. that is such a good question. I'm go with mountains because I think that's where my husband would be happiest. ⁓ Yes. Jennifer Jumba: Yeah. Happy husband. Yeah, I, yeah, absolutely. And I also think maybe throwback to Charlottesville in that time there of the pop culture references, which there are a ton in this book. And since we're roughly of the same generation, it was quite fun to see. We talked about movies and TV shows music. What is one TV show or movie that you can watch over and over and over again? Tiffany Graham Charkosky: Mm-hmm. The Breakfast Club. Woman, Dirty Dancing, Titanic. Jennifer Jumba: That's amazing. There's something that I read recently that, when we go through tough times and you find people that are kind of watching stuff that they've seen over and over again, that there's that sense of comfort. You know what the outcome of the story is going to be. You all the lines, you can recite them by heart. you talk a little bit about, one of my favorite lines in the book is about your mom and whether or not her sickness would eclipse memories of her that were good. Will you share one of favorite memories of her? Tiffany Graham Charkosky: there's ⁓ many. ⁓ so ⁓ don't know if this is a favorite memory, but it's one that I've been thinking about a lot. we lived on this street called Rosewood in Lakewood, and there's a park at the top of the street. And we used to go to this park all the time, like ⁓ the neighborhood kids would go there. And Jennifer Jumba: I mean, there's so many to choose from, I know. Tiffany Graham Charkosky: have this memory of these kids littering at the park and my mom being like, you need to pick that up. I was mortified she called these kids out. But I like it was so emblematic of like the type of mom that she was, was that she just like expected you to like do the right thing. And she was sort of on you to like make good choice and like trusted that her kids were out in the community making these good choices and good people. And just weird, just this weird little throw away thing, know, one of a thousand days of these days where just, it's like, I remember like, I can picture like the way her finger was in the air and the way that like the sun was on her. ⁓ She was also, I just have to throw in one more. ⁓ She was so at, Jennifer Jumba: ⁓ the little wag. Yeah. Yeah, absolutely. Tiffany Graham Charkosky: finding the free things that you could do in Northeast Ohio. So there was this like water park called Dover Lake Water Park and it was like these water that were in the Cuyahoga Valley. ⁓ They exist. The park is closed at this point. But we go ⁓ like she hear on the radio that there was like a day that was open to the public and you better believe that we were there on the free day that the water slide park was open or the free day that the zoo was open or that she would make an activity out of like going to the grocery store on free sample day and like that would be our lunch. And she just did this like really, like we did not have a lot of money growing up, but she never made it feel like we didn't have a lot of money. It was more like she was fun and creative and figuring out like how we would have these good like fun experiences. you know, this way that was always like this big adventure. And so she was really good at that kind of stuff. Jennifer Jumba: Yeah, well, I can see where you get your creativity from for sure. Yeah, she sounds she sounds like an amazing person. And ⁓ have to believe that you mentioned her wanting to see her kids doing good in the world, I would say she check that box because yes, you all are. What is a book you think everybody should read and why? Tiffany Graham Charkosky: Thanks. Thank you. this is a really good question. ⁓ is a really good question. I bought my son, Ben is now recently 17, I bought James Clear book, the Atomic Habits book for And I feel like from nonfiction perspective, I just really love this idea of trying to improve yourself 1%. Jennifer Jumba: besides living proof how love defied genetic legacy. Tiffany Graham Charkosky: every day, just sort of these building these small habits. And I think that's where, you know, 300 words a day or, you know, just continuing to like, try to be 1 % better. So that is a nonfiction book that I would recommend to, to anybody. And it's hard for me to recommend like a work of fiction because tastes are so subjective, but I'll stick with Atomic Habits for the purposes of this call. Jennifer Jumba: Right? No, it's a fantastic book and a huge fan of the book. is and atoms and how small they are. And so there are these little micro changes that if consistent, show a huge amount of growth. So Tiffany Graham Charkosky: you Mm-hmm. Mm-hmm. Jennifer Jumba: huge fan of the book. And the last question, what song would always be on a road trip playlist. Tiffany Graham Charkosky: Definitely, definitely Horses by Brandy Carlisle. ⁓ Jennifer Jumba: Yeah. I mean, talk about like singer storyteller extraordinaire. For sure. Tiffany Graham Charkosky: Mm-hmm. Yes. Jennifer Jumba: Huge thank you to everybody listening and especially huge thank you to Tiffany for being brave and sharing the story, living proof how love defied genetic testing with us. Being so vulnerable has to be difficult. And at the same time, I hope you realize how many readers will resonate with your story for so many reasons. This is you putting good and hope out into the world, letting hope ring louder than fear, which you say in your book, and letting someone or many someones know they are not alone. To know who else is visiting, go to storiedaccount.com. This is Account with Jen Jumba.