In this episode, we talk to Tonya Ingram, a poet and mental health advocate living with Lupus. During our conversation, we discuss Tonya’s experience being on the kidney transplant waiting list, the darker side of the organ transplant process and OPOs, her poetry practice, and choosing to blossom — despite the conditions of the soil.
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This is So, Life Wants You dead, a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under I close my eyes and imagine myself writing. Now all these years later, I can say that was honestly what saved me. Well, that and a brand new liver, I'm Nora Logan, and this is a podcast on how looking at death helps you live. Today my guest is Tonya Ingram, an LA based poet, mental health advocate and kidney transplant hopeful living with lupus. On today's episode, we talk about Tonya's experience with lupus, waiting for a kidney transplant, the darker side of organ transplant, Tonya's poetry practice and her third book of poetry, how to survive today. Here's the conversation. Tonya, thank you for being a guest on So, Life Wants You Dead, welcome to the show.
Tonya Ingram:Thank you for having me. Thank you so much.
Nora Logan:You're a big proponent of rest. And I always want to ask my guests at the beginning to tell me what does rest look like for you. And what's something that helped you feel rested
Tonya Ingram:this week, rest to me is allowing myself to do absolutely nothing. And being okay with that, I feel like rest for me in my 20s didn't really exist, I felt like I had to just keep going and going and going. But living with a chronic illness. And just also getting older rest is like the foundation of everything, I can't do anything if I'm not well rested. And I've rested this week. And lately, by just being on this couch that I'm sitting on and watching anything that brings me joy, which is right now repolish drag race and the newest season of Westworld that came out last night, but just allowing myself to be and rest doesn't have to look like sleeping rest is in what ways am I content in my body with my time and with my energy?
Nora Logan:That's beautiful. I'm with you on all of that. I wanted to read a short quote that you said at the beginning of one of your readings in 2015. About your lupus diagnosis. In December 2013, I was diagnosed with lupus. Lupus is an autoimmune disease where the body is basically attacking itself. And I was in hospital for about a month. It was a very difficult time, but also a very beautiful time because you get to learn a lot about yourself when you're faced with something so severe. So I'm curious to know, that's quite a long time ago now, how did your life change when you received your diagnosis? And what was it in retrospect that you learned about yourself with that diagnosis, looking back nine years now,
Tonya Ingram:I was in such a different place in my life. But one thing in that quote that really stands out, and that's changed my perspective totally, is that I always at that time looked at lupus as the body attacking itself. And as I've grown to have this relationship with my body and with this illness, I don't look at it as my body attacking itself, but rather, me and my body are having communication issues. So if that's the case, then how can I learn to listen to my body? How can I learn to give it rest? How can I learn to be patient with it? How can I learn to love it, or just be okay with it when I'm not in love with it? When I was diagnosed with it at the age of 22. It was quite overwhelming. I didn't know what to do. I hated the stretch marks I thought the world was over. But now I see that the world is just kind of actually beginning for me in this really beautiful way. And that living with a chronic illness is not a death sentence. It is truly I believe, a way to look at myself in this life in a whole new way. And to really appreciate what I have. I appreciate my body so much differently. Now. It really is a healing tool. It's keeping me here. It's not attacking me. It's really like hey, Tonya, can you listen to us? This is what we need. And then now I'm like listening to that when I'm like nauseous, like why is my body nauseous? Or I'm having an ache or my joints are stiff? Why are they stiff? I might be stressed out, okay, I might need to breathe. So it's really about fine tuning my ear to what my body to what my self needs. And that's changed over the years. You know, I look at myself as beautiful. I didn't really look at myself as beautiful in 2015. I looked at it as a disease. But now I'm like, No, I am beautiful in this illness and it doesn't define me I get to say this is what it is. This is how I get to show up. And I'm beautiful in it. And I love that I get to find other people who have chronic illnesses or autoimmune diseases and feel that community within that as well. And so it's changed a lot. It's changed my life quite literally when I was 22 Now I'm 30. So that's like an eight year difference of a journey. And this just kind of beginning you know, lupus, it doesn't have a cure. So this is something for the long run. And so I'm just kind of learning how to be comfortable in myself. It's a day to day journey, it's one step at a time, today, I can be really good in my body. And tomorrow, I may be on this couch, unable to move, and understanding that that's what this is this up and down, which is quite literally also a metaphor of life. I think having a chronic illness really allows you to understand life in a way that I feel like if you don't have it, you can't see the metaphors in it, which I'm really appreciative for.
Nora Logan:Yeah, I really identify with the idea of when I was first sick and had my transplant, I really felt a battle with my body. And now in the same way that you notice whether you're feeling nauseous, and it's like, okay, why it's this journey of coming back to our body and becoming really intimate in a way. And so often, I would feel like this was a detractor from my life, and the gifts of being sick and having a body that has intricacies, which everybody does, right. But chronic illness really shows those intricacies in a very intense way. It makes you stop and notice and collaborate. And I love that shift that you made from I'm being attack to. We're having communication issues. It's really beautiful. I've heard you say that before. I was wondering if you would read. I am 22. I know it's a long time since you wrote that poem, but I would love to hear you read it.
Tonya Ingram:Absolutely. One thing I'll say about that poem, too. I wrote it while I was in the hospital. When I was diagnosed when I was 22 years old. I find it very necessary to perform that poem as often as possible, because it stays with me. I was 22 I'm 30 so the poem will always be relevant. So I'm so glad that I get to share it with you all right now. I was 22 Rocking the latest 85 always down for a diner. Thrift Shop educator. Eight Mile enthusiast, Cincinnati Bengals fan when and if it will ever matter. Kendrick Lamar is hand and matrimony the epitome of hashtag That awkward moment when Angela Bassets bestie hater of all things Hollister, a griffin door or Raven claw but never the Hufflepuff the embodiment of Olivia Pope as PETRONAS I was in love with a boy and his hand stitch guitar is odd stitched hearts harmonizing in the key of lonely I am mother's water broke in church pew fathers last letter daughter who will never meet I'm scared to be black. I am proud to be black. I have never seen the notebook but I've rewatched every installment of Friday. I am metaphors that boost my street cred because all I want in life is to rap under the alias Tonyasaurus rex I am a bullet in an open flood swimming in the junkyard of the most sacred drowning I'm a girl still learning God. Lupus is an autoimmune disease. This means immune cells in the body that usually destroy viruses begin attacking healthy parts of the body such as skin, blood cells, kidneys, heart and brain. The cause of lupus is not known. Other symptoms include a butterfly shaped rash across the bridge of the nose, sunlight sensitivity, arthritis, fatigue or depression. There is no cure for lupus, but most people can lead normal active lives with proper care. I am diagnosed with a rewatched every installment of Friday because all I want in life is to rap under the alias Lupus is an auto immune Daraa he will never meet a thrift shop virus. This means the cells in the body are scared to be black of the symptoms include harmonizing in the key of lomi and the embodiments of Olivia Pope as PETRONAS I am in love with the Cincinnati Bengals disease spinning in the junkyard of the most sacred drowning I am a girl still learning God I am a griffin door began attacking the normal parts of my body for never seen the notebook the butterfly shaped rash across the bridge of the nose is depression I am proud to be mother's water broke in church pew the epitome of hashtag there is no cure. I am 30 years old, rocking the latest lupus common symptoms are metaphors that boost my art stitch kidneys stunning blood cells wrecking brilliance of a brain still heart. Good skin. Most people can lead normal active lives without cure with pain. Proper care in an open flood, where the most sacred Drowning is the girl who was still learning. God.
Nora Logan:So beautiful. I'm curious, reading that now. And having had so much time pass, how does it feel in your body when you read it now?
Tonya Ingram:Who cares a different emotion like, even while I was reading it, I was like, am I about to cry right now or just like it sits differently. Because when I wrote this, I was 22. So my world was different, my body looked very different. I did not understand lupus at all, or what it was doing to me, I really felt like I was dying. But to read it now I'm like, Oh, I'm still here. So a lot of it is like, wow, I survived all of that. And that makes me very emotional. Because I don't know, I don't know if this is true for you. But dealing with lupus, sometimes I dissociate. Sometimes I'm just like, not present in my body at all. I'm just like, Yeah, this is happening to me. But like, I'm just here, you know. But as I've gotten older and just more mature with lupus, I'm like, more present. And so being present and being like, Oh, like this is happening, this isn't normal. And so sometimes, I just have to check in and when I'm tapped into my body, again, when I communicate with my body, I'm like, Oh, wow, look at how much I survived to be here still. So that's really I think, where I'm at with it like, well, I'm still here, like, I'm still living in this. And that as I go, I'm still here, like, exhausted, like, I'm so proud of myself for still being here. Yeah, I really identify with the disassociation stuff, because I think sometimes it's just how we cope, right? It's like, oh, I'm in the hospital again. And I'm having my skin poked by blood draws and the rest of it, I had to disassociate because it was happening so often. So I think the growth, at least for me, I'll speak for myself is in noticing that that happens. And noticing when it doesn't happen anymore. It's a really powerful poem. There's so many parts of it that I have, because I've read it and reread it and watched you performing it. There's one line that you say, I am scared to be black, I am proud to be black. And you talk about the experience of being black a lot in your poems. I'm curious about the intersection between having a chronic illness being diagnosed with lupus and also being a black woman? Like, is that a specific experience for you? Absolutely. I will say in many ways, I think being a black woman in America is its own particularly strange, chronic illness, and metaphorically speaking, but in terms of just how we're seeing or how I'm seeing in the history, and just I can say so much about that. But being a dark skinned black woman, too, I think is also a specific kind of thing. But dealing with a chronic illness. And being in that Western kind of medicine, being in the hospital, sometimes, or a lot of times, I'm not looked at as fully human, or I'm just looked at as just like this patient, you're just this thing you can like poke and prod. And that is very much the experience of being black. In America, you're just this object, this thing, you're not fully human at one point where we're three fifths of a human. And so that's very intertwined with what it means to have a chronic illness here. And so it is my job as not only a person but as a poet, as someone who's an advocate for chronic illness is to be their representation to say, No, we're human, we're fully alive here. This thing, this disease is not me. I am Tonya Ingram, I am a full human who also has a cat who loves watching RuPaul. There's so many facets to me. And I'm not defined by this diagnosis, in the same way that I'm not just defined by whatever the world sees me as a black woman that I am complex, as this disease is complex, and embracing that. And so yeah, there's been specific examples of being in the hospital and being completely neglected, or just not considered, and really being like, Oh, wow, this is so much deeper than I thought, just knowing so much about the history of how black people, black women specifically have been treated in the hospitals. You know, in western medicine. I'm very aware of that. And I felt it myself. And so I've learned how to use my voice. I've been blessed with the opportunity or just the gift to be able to perform poetry, but using that in the hospitals to be my own advocate has been really instrumental. I remember when I was 22. And in the hospital, I had to like gather all of the doctors and nurses around because there was an incident in which I was neglected and they left me in my feces overnight. That was like the last straw they did so much more but that was like the last straw and I had to really use my voice in that moment and say no, you guys need to see me and like hear me and I'm not just this experiment. I'm not a science experiment. I am a human Please treat me as such. I came here for Hair. And that is so, so relevant to what it is to be a black person, a person of color, any marginalized community in this world see us, we just want to be seen. We're not asking for much, but just see us as human. And so that's my mission here and my work specifically as a poet, and in my work as an advocate, that's such a great question that I don't really think about. But I'm like, it's so obvious, you know. So thank you for that.
Nora Logan:I just think so often, as patients, in general, we're not seeing in our humanity. And it's a blind spot that I had when I was in the hospital over the course of the years that I was in hospital, that I didn't necessarily notice that I was potentially being treated differently, because I'm a white woman. And even then, I was ignored and left. And I also had to do around up with people and tell them, This is not acceptable, what you're doing, you have to pay attention to me, always happens overnight as well, doesn't it?
Tonya Ingram:Yeah, the night shift.
Nora Logan:Yeah, the night shift, you get ignored. It's something that I respect you so much for speaking up about and advocating for yourself, not only through your poetry, but just in general, with the space that you take up, both online. And in real life. It's inspiring for me to see, I like to talk about death. I don't shy away from it. I have five planets in Scorpio, and I'm into death. But you talk about the experience in that particular poem of being afraid to die, I really felt a kinship with you reading that poem, because I was faced with death a few times. And then when it came to that moment where I was close to death, I actually really write and didn't want to die. So I'm curious around how you view that now, eight years later, how do you feel about death right now, in 2022,
Tonya Ingram:very differently, I do not invite death, but I am not afraid of it. Meaning when it is time, I am at peace with it. When I was 22, I thought I was dying. And I remember being in the hospital, just wanting to give up. So at that point, I was just like, whatever death like take me, please, I just can't deal with this. But now I look at it as who I don't invite death in that same way. But I do hold a piece for it when it comes. And again, I think living with the chronic illness, it almost feels like daily death, it feels like it's here all the time, I feel like death is around me. And again, I don't say that in a very scary way. I say that in a way that like it's not scary. I don't fear it, I don't, because I know that I just have a peace in it, I just have such a deep peace knowing that this body will rest truly rest. And that while I'm here, I'm going to do the best I can to fight. So that's why I don't invite it because I know I have a mission here. But once that mission is complete, I get to rest. And that's a beautiful thing. And I'm grateful for that. But yeah, it's different. It's changed. I used to be terrified. And I'm like, I don't want to die. Oh my gosh. But I'm like, No, that's not it, it's peaceful. And I have to go to my dialysis clinic several times a month to check in with my nurse. And when I'm there, I see a lot of the patients that are on the dialysis machines. And even when I was on the machine, I'm one of the younger people in the clinic. But a lot of the patients are a lot older. And you can see some of them kind of like it feels like death is near. And I don't say that hopefully in a dramatic way. But you can see the way that they're sitting there the way that they're aching in pain. And I can see that when it's time there will be peace in that body and for that person. And so I'm around it. Often I see it often I see it when I'm going to dialysis, I see it when I'm by myself and I go I understand that you know that it's a natural part of life. It is a natural part of life, and to be afraid of it is something that I had to conquer. But now that I'm at peace and like oh, okay, now I just get to have fun. Now I just get to be present, and just allow myself to be so that when it's time, I can say hi, I did what I needed to do. And it's time to rest now.
Nora Logan:And I think that getting intimate with it is what changes things. It's that being familiar with it, which in the West, we are so disconnected from death, so you don't see it every day. So it's that relationship that changes it. At least as for me, you have this quote, despite the condition of the soil, I will choose to bloom which I love. And it's similar to the Buddha's saying no mud, no Lotus. I don't know if you're familiar with that. But it's a Buddhist saying that it's just a similar idea of there's no mud, the conditions of the soil, right? No lotus, no flower. But the thing that I love about your quote and this saying that you have is that there's this element of choice in it. You bring in this element of choice into something that has been said and in many different ways. Can you say a little bit more about that? Like what does that choice look like for you?
Tonya Ingram:I think a lot of things are choice. Live with lupus, everything is a choice, I can choose to stay in that all day or I can choose to not I can choose to ignore my body, I can choose to listen to my body. So in that, quote, it doesn't particularly just pertain to having a chronic illness. But despite the condition of the soil, despite the world, despite the news, despite your heartbreak, despite your doubts, despite the person who cut you off in traffic, despite all of those factors, you will choose to hold yourself tightly, you will choose yourself, I think that's it, like, whatever is happening around me doesn't have anything to do with me, I'm gonna choose myself. And in that choice, you really get to get closer to who you are, get really grounded in who you are. And that allows you to grow and blossom and be the best possible version of yourself. Because I think that's why we're all here. We're here to help ourselves so that we can help the world and in doing that, we have to make choices that will cater to that blooming, despite the world because the world would be the world there will be chaos, there will be destruction, there will be wars, it will be injustices. But despite that, I'm still going to choose myself. So we're going to choose my community, I'm still going to choose the good even when it's difficult. And being patient in that process. Because blooming is not an overnight thing either. Flowers don't bloom overnight, they take time. So then that time just being patient with that choosing yourself every day, choosing yourself every second of every day seems too daunting. But making those intentional choices for yourself makes all of the difference.
Nora Logan:And I should say, you know, we're recording this on June 24, which is the day that the Supreme Court struck down Roe v. Wade. And it's a day that for me, it's been full of grief. And I know for so many people, it's a day that is full of grief and it feels really hopeless right now. And that sentiment that you were just talking about, like despite the conditions, we can choose to fight we can choose to stand up, we can choose to move forward rather than dwelling in the grief of it because it does feel overwhelmingly grief. It is one of my favorite words. That isn't a word.
Tonya Ingram:Wow. Yeah, that's absolutely the nail on the head, the fighting of it to the world feels impossible. Right now I keep talking about that with a lot of my friends, it feels very impossible. But within that still choosing. Now that's I think a lot to do. You may feel like oh, I don't know how I can do that. But we're doing it. And I believe in the good of people that they're still good in this world. Because we only see the bad. Sometimes we don't get to see the good, we don't get to see the people choosing to bloom and fight and do the work. But that we're here and we just have to keep going one second at a time I say because that's how we can move forward.
Nora Logan:Yeah, one second at a time. That's the only way to do it. So the writer and lecturer and also patron saint basically, I feel like of Instagram is Rachel Cargle?
Tonya Ingram:Yes. Shout out to Rachel.
Nora Logan:She's amazing. So she said of your work, and your new book, How to survive today. How to survive today is a mirror of reflection for those with hearts, as well as a glorious invitation to really see oneself. Tonya, as always offers herself through her words, as a teacher, friend, Muse and magician. By the time you're done with this collection of her work, you will have that feeling you get right after time spent bathing in the sun, seen soft and a little bit stronger. And it's so true. I told you I read the whole book in one sitting. And you have a poem in there called how to be strong, which really relates to what we were just talking about. And it spoke to me on so many levels. And I was wondering if you would read it for us today.
Tonya Ingram:I think of all of the palms in that book. That's the one I read often and I think it's probably my favorite, so I'm really thankful to read it. How to be strong. Don't be a hot mess. An ugly cry in the emergency room. The third rejection letter this week. ruin your makeup while weeping over the unpaid parking ticket. The overdue phone bill, download OKCupid immediately after the ex you met on OKCupid leaves you borrow a shoulder to lean on a Spotify playlist to lose your voice to find a bubble bath after dialysis. Find a cute dog after an anxiety attack. Find your name after you recall out of it. Write a love poem. To the day you could not get out of bed. Laugh at the negative balance in your bank account be bold about your fears about the diagnosis. About the day you thought you would not make it strength is an occupation. A mirror gold and dust a thing we cannot see when the world is ending. But a reminder we Keep, when we survive long enough to see that it has not so beautiful.
Nora Logan:I think there's this idea, someone who's had serious physical trials and lives with chronic illnesses that were strong, goes back to that idea of forgetting your humanity. And, and I love that you constantly go back to this humanity, that you are a full person, which I feel so strongly about myself. And sometimes I just want to say a big fuck you to people who are expecting that I'm strong, because people will say it. And people will say, I can't believe you're so strong, you're so inspiring. How did you deal with it? And I've cried in the emergency room, I've hung up on the bill collector, it really spoke to me and I, you know, you're so good at marrying the mundane with this really beautiful imagery. And I want to know, like, when you're faced with that, that expectation to be strong. How do you move against it? How do you stay soft?
Tonya Ingram:Yeah, that's a really good question. I find that over time, I've allowed myself to show my vulnerabilities and really show just the joy of being alive. I think people kind of see me as being strong and thinking that like, every day, I'm working on my healing every day, I'm trying to fight this trauma, that that's the only thing I'm focused on. And that's what the strength is. But really, I'm also very silly. I love to do the little mundane things. Like I love just to be a goofy person. And that adds to the humanity. So I think showing that to people like I love humor, I love dark humor. I love making fun of this disease, because you have to, in order to survive it. And so that's my way of combating that you're so strong, you're so inspiring. I appreciate it. Because I know the intention is pure and is there. But I think trying to kind of combat that with Yeah, this is also me, some people I feel like and I've heard this, some people say you act like you don't have a disease. And it's not that athletic, I don't have one, I very much have it, you can see it. And it's real. And I'm very vulnerable about what I go through. But I also live my life as if I'm more than that, because I am more than that. And so that's my biggest thing. Because strength is such a weird word. Like you're so strong. And again, also being a woman being a black woman that's like, You're so strong. It's like, yeah, no, I'm human. I'm just here, y'all like, don't give me an award for being strong. I'm here doing what you're doing. And that's all I'm doing. I'm just being alive, you know. And so kind of reminding people of that, and that their true strength is vulnerability. Our truest strength is being vulnerable and saying, I'm not feeling good today. Or like, I'm having a tough day today, or I'm really in my depression today. Whatever it is, and I think that's strength. And we all have access to that. I'm just doing it as much as possible. So when people say that to me, I try to turn that around on them and like, make it about them as well, because it's not just the me thing. It's an us thing. We're all figuring this out together. And so that's been my way of displaying. Yeah, what about you? Like, how are you doing today? So that's not just me. And I'm like this weird little honor. No, like thing in a museum. You too, you're strong. You know why you're strong. Because you're here, you're alive. We're all strong.
Nora Logan:Yeah, we're all strong. And we all experience pain in the same way too. And just because you have a diagnosis doesn't mean that you somehow can experience pain more easily. So I want to shift a little bit and talk a little bit about oh, POS, organ procurement organizations, which is it? Insane mouthful. Yeah, but I don't think it's something that a lot of people know about, and I certainly didn't pre transplant. You are on the kidney transplant waiting list right now. And in 2020, you wrote an article for NBC News, titled organ donations get wasted every year. That's killing people like me, which is such a powerful title. And I would encourage everyone listening to go read the entire article, and we'll put it in the show notes, but I wanted to read a short excerpt from it. You right at 28 I should care about making out on the dance floor unpaid parking tickets and marathon watching the show fleabag love that show. I should be busy my days with travel and thinking about my next tattoo. Instead, my schedule is doctor's appointments and surgeries and medication and protecting my compromised immune system. I'm more than the person I was before knowing my life would never be the same again. As hard as it is I know I'm stuck with dialysis until I get an organ transplant and can begin to live normally again. So I'm standing by alongside 112,000 other Americans, most of whom are waiting for kidneys, though others need hearts, lungs, livers and other organs. That's why the investigation by Kaiser Health News and reveal from the Center for Investigative Reporting published by NBC News earlier this year about hundreds of organs being mishandled and lost in transit so appalling. Every one of those organs is a shot at life and yet they're being treated like old luggage. As I've learned this is just one problem in a horribly broken organ donation system. organ donation in this country is run by a system of government contractors called organ procurement organizations or NGOs that have monopolies over the areas they cover. Opioids are charged with coordinating how the most precious gift the person could give is recovered from a deceased donor and gets to a person waiting for a transplant. So you go on to talk about the failings of the system. And it's something I'm really familiar with. And something that I found particularly shocking is that the CEOs of these organizations make in the high six figures, the CEO of LA's opio, which is where you live, was on a salary of 750,000, when you wrote the article, and I looked it up, because it's all public. And he's now on a salary of 875,000, with 97,000, in additional compensation, and this is true for all organizations of this kind. And they're not particularly successful at their jobs. I'm just wondering where you're at on the subject of opioids. And it's been two years since then, where you are on the kidney transplant waiting list and what your thoughts are in general on this?
Tonya Ingram:Yeah, well, can we those two years ago, I still feel the same to know that this person's salary has increased, and there are still people on this transplant was waiting for it. And Oregon is wild to me. But I have been fortunate enough, blessed enough to be able to work with Representative Katey Porter, who's our representative here in California to continue to fight on this forefront. And so we're still doing the work, we're still fighting for people to be able to live, which is wild, I even have to say that, but is what we're dealing with. My mission is to just use my story is just to allow my story to be bigger than me, as I've always done in my poetry. Now to be able to literally do it with my life is a blessing. And so that's where I'm at with that just still fighting, still being an advocate. So just putting myself out there for the greater good. In terms of my kidney transplant waiting, I'm officially on the waitlist. I think at the time I wrote that article, I was not on the waitlist. So that's a blessing, I'm on the waitlist. The flip side of that, which is why like we still have to fight is that because of my blood type, I'm Oh, the wait can be up to 10 years. That's a wild amount of time. And I'm like probably like two, three years and now. But that's a long time to wait for anyone. And I can only imagine for the older patients, that's too long of a wait for anybody. And so I'm on the waitlist, but I'm hoping that a living donor can totally cut that time, drastically. So being on the waitlist and waiting for an Oregon from someone who has passed, but a living donor, I will be waiting maybe up to a year or so there is a time change in that. So I'm hoping that that is what will happen for me, which is what I did on Instagram on social media. I just put that out there. And I got such an overwhelming, beautiful response from people I don't know that wanted to be a donor. And so just doing that work, because where the appeals are failing, I'm like, Well, where can I pick up that work and like be an advocate for myself.
Nora Logan:Luckily, with kidney transplant, it's living donor transplants are really successful. So hopefully, keep putting the word out. And we'll put the word out. And hopefully that can happen sooner than 10 years, because 10 years is a long time to wait. So in the intro for how to survive today, which is very apt when you know you're living with so much uncertainty in regards to transplant. And also just in general, when we live with illness, we live with a lot of uncertainty. And you right? This is for those of us who know the drama of mental health. We also know the music of survival, how to dance in the company of our thoughts, how to be the most gorgeous story still being written how to survive today. And this is something I grapple with a lot in my own writing and self inquiry, this idea of how do we survive today, a prayer that I say every day is please let me get through today with grace and ease. So as we start to wrap up, I'm curious, what does survival look like for you today?
Tonya Ingram:I love this question. Survival looks like ease. It looks like softness, it looks like rest. It looks like Joy does not look like productivity. It does not look like hustling. It does not look like what do I do but who can I be today, I'm not really defining my survival as Oh, I got to take up all of these gigs or I have to be relevant or I have to post every day so that people will know my name. My survival is I just want to be with my cat. I just want to look at the sky. I just want to be good to me. I want to be kind to me, to my community to this earth. That is my survival. It's changed so much for me but I'm really content with what it is now it is how can I show up for myself right now? How can I be present right now? How can I heal right now? How can I also take a break from healing because that's also a part of healing is taking A break and saying, I'm gonna have to survive right now I don't have to work on my survival, I can just be here. And that's it. You know, we're all just meant to kind of be here and just be present. So it's softness is ease, it's rest. It's looking at the sky, it is no longer kind of writing the poem, but being the poem.
Nora Logan:Yeah, I took a deep breath, as you were saying all those things is like, yes. That's how I want to survive too. And I think we all strive for that. It's hard to remember, but it's something that everybody needs to hear. So I have three questions that I want to lead us out on. Pretty short. So if you lived in a world that completely catered to your chronic illness,
Tonya Ingram:what would that look like? People just having a lot more patients. One small example, I had to take a lift to my dialysis appointment. And I was running a second late because my body was just doing its thing. And so I was telling my driver, hey, I'm running out one minute. I did. I was there in the one minute time, but he had a bit of an attitude with me. And that hurt me because I was like, oh, man, like, if you only knew why I was running late, I don't have to tell you, I have to explain it to you. But if you only knew, then we drove we finally pulled up to the dialysis center. And I think he saw the sign. And he's like, I'm so sorry for how I snapped at you earlier. And that was just a moment for me of like, wow, I wish people just had a bit more patience for all humans, but specifically for people with chronic illnesses. The patients, I think, is the thing that can manifest in different ways and in our infrastructures and our institutions, in the ways that we can support in those smaller ways. But the bigger umbrella is patience for us, because we are literally doing the best that we can with what we have. And I just feel like that's not considered people just don't have that. So patients,
Nora Logan:patients, patients, for chronic lateness with people, because I'm trying the best I can shout about it. What's one phrase or saying that you always come back to like, if you have one thing, one mantra, for lack of a better word, what is something that you always come back to?
Tonya Ingram:I am safe? That's been my thing I've been saying lately, I think dealing with illness or any kind of trauma, you're always feeling like you need to survive. You're in high alert all the time. But reminding myself that I am safe. Right now. I'm so safe. My body is with me. I have everything I need. I am safe. When I tell myself that my body kind of just like stops freaking out my shoulders drop jaw on clenches my heartbeat kind of drama. Oh, I am safe. Okay. But I have to remind myself literally like 10 times a day because I'm so used to doing this all my life. Literally, I've been in survival mode. I am so safe. I'm the safest I've ever been in my entire life. So I just have to remind myself of that. I'm safe.
Nora Logan:And then your body hears it. And it's like, Oh, yeah. Chill out. And then finally, what's one thing you do to keep yourself creative each day?
Tonya Ingram:I love this question. Dancing. I have this little mini trampoline that my neighbor gave me. So I just put on some music, I literally just get on that thing. And I just jump around, I sing very loudly, my neighbors probably think I'm a fool. But I don't care about that. So I just dance and sing karaoke and dancing movement. Honestly, moving your body. Uh, you know, my body's so used to being poked that product, catheters, transfusions, chemotherapy has been through the works. So reminding that it can still move this body. And that's where the joy comes up. That's where the stress gets relieved. That's how we really balloon in that movement, and that vocalization, and just kind of dancing it out. Really, it's the way I'm most creative. It allows me to write poetry, it allows me to be alive.
Nora Logan:I love that so much because it's exactly the same for me. Every morning. I do like a five minute dance party because it's the thing that gets me moving and happy and in my body and creative, like you say, I love that. That's your answer for that. Lastly, I think during this time of extreme loneliness, this 40th year of the pandemic, I know that for a lot of people it hasn't really ended even though we've some what come back to normal, and we can feel really insignificant. I often feel really insignificant. And your poem, a reminder to those of us who feel insignificant. It really hit for me is really like a banger from your book. And I was hoping that you would be so kind to read it to us to take us out today.
Tonya Ingram:I would be honored and I would be honored. A reminder to those of us who feel insignificant. You are made of stardust. You are a galaxy reborn take site. Look up the love thump in your hearts radio is infinite you small radiance planet you bursting full moon, you are an earth poem, an unending story of how did you get here and who was your first love and what scares you most take site look up, it is okay to abandon the day and be as still as the North Star or as big as Jupiter, you are wondrous, and something to be marveled at. You are a sight to see.
Nora Logan:Thank you so much, Tonya. It's such an honor and a pleasure to get to speak to you today. Can you tell people how to engage with your work and where to buy your book?
Tonya Ingram:Absolutely. First, I just want to say thank you for having me on this podcast. It's what I need it today because I was just kind of all over the place. So this grounded me in the way that I really need it. So thank you, thank you. Thank you.
Nora Logan:It's a pleasure. Thank you.
Tonya Ingram:And you can find me at tonyaingram.com That's t o n y aingram.com. There you can find ways to support my poetry you can buy my book through there. I'm also on Instagram pretty frequently and that's where I do a lot of my quirkiness or just poetry or whatever. I love making friends. I don't believe in the idea of followers or fans. I think that's strange, honestly, but I believe in friends and supporters. So if you want to be a friend and hang out with me, I'm on Instagram and that's@tonyainstagram, to NYHA Instagram, and outside of that, I'm just out here chillin. But yeah, those are the main ways you can support me.
Nora Logan:Amazing. Have a good rest your day. Take rest take refuge and I'll see you soon.
Tonya Ingram:See you soon.
Nora Logan:That was our show So, Life Wants You Dead, thank you for listening. This episode was made in collaboration with and support from Soho House. Many thanks to Jamila Brown, Min Shrimpton, Olivier Geraghty, Sagal Mohammed, Erica Bonet, and Teo van den Broeke, our editing is by the amazing Olive Olin. Our illustrations are by the extremely talented Ronaé Fagon. And if you like our show, please subscribe. Leave us a review or rate us on Apple podcast Spotify or wherever you get your podcasts. If you want to hate as the inimitable adrienne marie brown has said, keep our name out your mouth. Reading us and subscribing are really what makes a difference. You can find us on Instagram@solifewantsyoudead where we talk about what's coming up and how we probably need to rest. Thank you so much and see you next time.
