EPISODE 41: EVOLVING DREAMS WITH EHLERS DANLOS
Guest: Monica Michelle
Lauren: Hey Monica, welcome.
Monica: Thank you. I'm so glad we were able to do this.
L: Me Too. I'm really, really happy to be sitting with you and just to make it clear, this is not our first podcast interview together because I have been a guest on your show. Invisible Not Broken.
M: A lovely, wonderful guest. I am so happy. The funniest thing is this, we are so close to each other and we still have to do this on Zoom.
L: I know, literally live across the Bay from one another and we've never met in person. We will though. I have so much faith.
M: Someday, you have to come to my little suburban farm.
L: Yeah, count me in. Well, I want to start out by asking you what your health journey summary is.
M: I love that you asked me like I can actually condense it and I will do my best.
M: So I'm going to try not to start Charles Dickens-ing with “the day I was born”, but I've been sick since I was eight so I've been in and out of hospitals since I was a little, little kid. And um, so it was just a big journey of diagnosis, which was my mom having to be a tiger fighting. Doctors said I was crazy all the way until we finally got some wrong diagnosis, as well as some right ones. So I'll just gloss over all of that and the seven surgeries I had before as 20 and we'll just go right to, um, I have fibromyalgia, which is the widespread body pain. So many of your guests probably know what that feels like. I have Ehlers-Danlos, which basically means that as the artist I am, my skeleton is also an artist and goes for modern sculpture. It's more decorative than functional. So I dislocate by pointing at things basically there is literally nothing I can do that will not end in a possible dislocation. And if anyone follows me on social media, you probably saw the other day where I posted a really gross picture of my wrists sticking straight to the middle of my hand. And that was just because I had like pushed myself back into bed. So that's how my world works. Um, I also have POTS which means I can pass out by standing up. I still do that, but I'm not supposed to. I'm really optimistic in my ability to move through the world, which can get me in trouble. So my heart rate can go from like 40 to 200 with very little warning. Um, oh, one more. I just got a new diagnosis because we need to collect them all, so I also have mast cell activation disorder, which basically means my histamines are as much of a drama queen as I am. So they will just randomly decide that I am allergic to. Doesn't matter anything at any point. I can be fine with it. The minute before my histamines decided allergic to it and the reaction can go from itchy to anaphylactic and I won't know. So I am a blast to be around. I am never predictable.
L: And the way you tell your story is like so colorful and vibrant and goofy. I just love your creativity and the way that you describe yourself and specifically how you describe these disorders, diseases, diagnoses. It's like you're telling stories about them with your sense of humor as you do it.
M: Oh, thank you. Well, it's a. You have to have a sense of humor about this, right? I mean, what else do you have? I mean, you pretty much have to sing for your supper when you're this sick, so you've got to entertain. You have to entertain yourself too. I spend a lot of time alone with myself, so I have to at least be good company.
L: Yeah. And well, and you're also, you're a good company to yourself. You're also just good company in general.
M: Thank you. I also have a little ones at home with me all day, everyday and I have to make her math lessons entertaining.
M: So if I can make math entertaining. I can sure make my illnesses entertaining.
L: Absolutely. How old are your kids?
M: I have an 11 year old little sprite and I've got a 17 year old who is just ready to get up and move the world along. He’s amazing. Oh, he also, let me just say, drives me to the edge of sanity, but he is amazing and I love him and my whole goal in raising him was and both my kids was that I would raise adults.
M: Thinking adults that question everything including me, which is not easy, but I'm really proud that he feels very comfortable questioning the world around him.
M: Even if I don't love the answer he comes up with right now, I'm really happy he doesn't take anything just as wrote.
L: Yeah. Oh, what a cool goal.
M: A big goal.
L: Just a few parenting tips in this episode, I love it.
M: It's one of the hardest ways to raise kids because you can never say I told you so. They will never be like, oh yeah, that doesn't work. Give me better. Come on and work at this. But you do end up with some very amazing like young adults and he's still one of my favorite people to hang out with. We just went out last night on a mother-son outing to go see Bohemian Rhapsody.
L: Oh goodness.
L: That sounds like a fun way to spend time together.
M: It was so good. It was so good.
L: Nice. Can you tell me a little bit about Invisible Not Broken and how it got started?
M: Oh yes, absolutely. That's basically why we're doing this. This week we were talking about how do you actually make something out of the ashes. So I told you I've been sick since I was little, but I had this incredible gift with being sick from that young is I never felt like anything was given and that means time and that means abilities. That means everything. I never felt like anything was without a finite definition nonstop. So I just decided I was going to go to the wall with everything and I went to dance. I went to ballet, went all the way to the wall until my legs gave out and would not work and that was one of the hardest moments in life was being told that that was, that dream was done, but I'm so grateful it happened when I was 16 because that was such an incredible lesson of you are not what you do. That's not your definition of yourself and you have to pick yourself up because at 16, hopefully some time afterwards. So you've got to figure it out, you can't just go, well, I guess we're done here. So it was this wonderful lesson of what you dreamed could stop, but you need to actually figure out what your core is. And my core is storyteller that is, oh, he's doing what I am as a storyteller and that can take any form. And that's really helpful because a dancer is very specific on what needs to happen. But storyteller that could be. When I became a jeweler, I told stories with my jewelry that I was designing and then my hands start to shake and I couldn't hold a, couldn't hold flames really well with my hands. So like that, that was a danger point. So I stopped doing that. And um, from that I became a photographer and I started my business on a credit card and it became very successful and I was a photographer for 10 years and I thought I would. I thought that was it. I really thought that, oh my God, I'm a storyteller and I'm taking pictures and in my paying my bread and butter is creative and wonderful and I'm giving people moments. Um, I'm giving people the true moments of their lives, their stories, these beautiful, amazing moments for them. This is unbelievable. And in my creative time, I wrote fairytales and I would grab models on the weekends and my makeup artists and be like, let's go to the beach and do a little mermaid and we're going to do a really dark, dark, dark little mermaid. And I would just play on the weekends with these stories. And I thought that that was going to be my life. And Ehlers-Danlos came hard and it really just beat up my body to a point that I had to ask for help. And I'm not good at that. I'm getting better. But I really wasn't good at it. And, um, through some incredible clients that I had as a photographer, they really taught me how to ask for help. And that was beautiful and amazing. And we got to a point way faster than we thought. My husband and I had really considered that we'd have an extra four months of the business when I was getting really bad and those four months were the Christmas season and that's where we made most of our money for the year and in September I got too sick to work anymore. We had to suddenly shut the studio down. So that was heartbreaking…
M: Yeah, and hard and I thought, okay, well what's next? So I sat down, wrote down lists of what is still physically possible, if the worst is the worst and the worst to me was bed, no getting out of bed, bed. That was the worst. And I wrote down what was still possible from there and I thought okay, well I, I write, I'm good at telling stories, alright kids books and I’ll illustrate them and I'll have a history bend because I really love reclaiming history and showing people what actually was going on back then. And so I did that until my wrist started to go so I couldn’t illustrate every day anymore. So it's like, okay. So after a year of being second and giving up my studio and then getting a new dream, only a year I've got to think of something new. Well, I have a voice and I can't seem to shut up, so I really need to, um, I plug in by talking to people.
M: That is my, that's how I recharge, is bouncing ideas back and forth. So I thought, well, there's probably a lot more people like me who are sick, who are not getting out, who have a lot to say. I'm going to start a podcast interviewing other people who feel invisible because of their chronic illness. So that's where we started. Invisible Not Broken is an idea of we're not invisible if we can keep talking and if we can keep screaming, we might be able to get some important things done. And also that there's this idea of what sick looks like. And there is, especially right now, I think a idea of intolerance if someone doesn't fit a particular appearance. So people who are very sick, who might not look sick, could get challenged if they parked in a handicap spot or they won't feel comfortable sitting down in a subway even if their legs feel like they're breaking, they won't feel like they can sit down because people will judge before talking.
L: Okay. Let me just tell you, we now have 20 things to talk about. I want to start at the very beginning and say I loved hearing the part where you talked about the different phases of what your dream and passion were and how you moved through being sort of having this awareness that you. That there is no guarantee or promise of forever dancing or forever drawing and that you just wanted to do what you could while you could. That is so cool that you did that.
M: Thank you. It was hard earned lessons.
L: Yeah. And it doesn't sound cool in the sense that it's very disappointing. That's not, that's no way fun. And yet, like you were saying, I've been sick for a long time, so I have that vantage point where I can say, okay, it's up to me to do the things that I want to do now while I can. And when you were told that you couldn't dance anymore, you were 16.
L: So it's amazing that you were doing it before then, like you knew enough to say, yes, let's do this thing. I'm not going to wait until later. So you have the experience of dancing and then the experience of all these other things being a photographer, which interestingly, I definitely would have guessed that you would be able to do it longer too, right? Like that's what we would have guessed together.
M: Yes. Yes. Even my physical therapist at the time was like, well, just keep like redoing how you're shooting and we invest. My husband, I invested a ton of money into new equipment because I was shooting with a canon, so that's really aptly named. It was heavy. It was like a really lovely, beautiful, amazing camera that was breaking my wrist because with the lenses on, it was about eight pounds, so it was a very heavy thing to hold and I hate if you can hear my voice, you probably know how impulsive I am. So shooting from like, I ain't going to put this on a tripod and plan out my shot and think this through was never going to happen. It was always me like moving fast. I was always chasing a or a baby or one of my favorite things is boudoir photography so I was always like moving everywhere to like really capture something. And I talked the whole time. Um, so it was just not feasible for me to use like a tripod with a little like button off to the side to click. It wasn't who I was. It wasn't going to be genuine to show how I shot, drove my assistants up a wall and back down again that I was so unplanned fight. It really worked. But if you've ever seen my photography, I will very much just let any idea of being humble go. I was good, and my photography was really good and it was good because I always kept in mind the story and that there was a human being on the other side of that lens that needed to be talked through and let who they were out without filter.
L: Oh my gosh. Yes. I mean, yeah, there's so many ways to be a photographer and for you, you knew your spirit and how your spirit moved and worked with photography.
L: And so you're like, I will not be held back by this tripod.
M: I think you just defined my entire life. I will not be held back.
L: Yeah, that's right. And I think, you know, it's very humbling just hearing your story, knowing that we don't have any guarantees that there's no promise that we'll be able to keep doing what we're doing and when. One thing you said earlier was you are not what you do, and that phrase is very familiar to me because they think you and I have been on similar kind of spiritual paths, but there are some people who may never have heard that phrase before and I wonder if you could talk a little bit about it. You are not what you do.
M: Yeah. We've been on some very similar paths and we both have unpredictable disorders, so it's not like either one of us has a real trajectory on this is what this is, this is what the treatment plan is. This is where you can expect to be in six months, 5 years, 10 years, 20 years. You have even more of an unpredictable nature to your disorder because there's actually hope on yours of like there are... There's actually treatments that might change that trajectory. So we're both in a very unpredictable path, but so what that means to me is that a lot of people define themselves by certain things and especially in 2016, 2017, a lot of people defined themselves by a political party, a political ideology. This is who I am. I am Democrat and Republican, MTFP, um, people defined themselves by a vegetarian. I am, you know, like there's so much that we choose, you know, even down to our sexuality, I am bisexual, I am lesbian, I am straight like there's so many boxes that we keep fitting in and whatever y'all need to do to get through the day, please feel free. I'm just saying that when we start defining ourselves so rigidly, that doesn't leave any leeway for change. And when I was defining myself by I am a dancer, I'm a ballet dancer. That was my heart and soul and it was. I would wake up at 4:00 in the morning in high school to dance in the morning, then go to school, then come home, fit in homework in between sewing pointe shoes and get to the studio and dance again. It didn't leave much leeway to develop other sides of my personality and other parts of who I was and learning more about who I was in that time that I was sick and I was going through surgeries and recovering from surgeries really did help in developing. Okay. So I'm not a belly dancer anymore. Well, what's been true about myself and to keep heading back and we've been watching my 17 year old kind of set looking back at who he was as a kid and watching my even 11 year old think about who she was even like what was, what was really interesting me like before I had other things, deciding what I was and I think that's kind of true about us as humans are always trying to rush back. We're always trying to run back to being like a kid because that feels true and real. Like when you're nine years old and you just don't care and you're just wild and free and who you are. And we're always trying to get back to that place through alcohol, drugs, through getting older, through not carry or always trying to get back to something pure like that. And it was a big discovery journey to figure out what was pure and true about myself. And I've always told stories since the time I could hold a pencil. I was drawing things on the wall. The second I learned how to write, I was writing stories, so really seeing that that was what my core was really made it easier to be more flexible with how that came out.
M: So it didn't have a rigid definition of dancer, jeweler, photographer. It became whatever my body allowed me to be. I could be a storyteller.
L: Mmmm. Okay. Here's the weirdest question I've ever asked on the podcast.
M: Oh my god, I feel so honored. I love weird questions. Yes!
L: How would people describe you if you didn't have a body?
M: I would say like how people would describe me as probably I'm generous and caring, um, to a level where it's not always healthy for me. Creative is probably the first thing that comes to mind. Goofy is probably a huge one. I like to think those things. Um, someday I'll ask my son because every very curious, but I'm going to wait until he’s 30.
L: Oh my gosh. I love that. Curious. Creative, goofy. What were the other words in general?
M: Generous, but I got to put forgetful in there.
M: I feel like that needs to be in there.
L: That is so Fair.
M: My three most terrifying words are. Do you remember? Like I'm like, I will disappoint you. The second those words leave your mouth. I promise you I will disappoint you, so please don't, don't do that.
M: Just start not with, Do you remember. Start with the incident and then I can only either fake it or try to like pull it together.
L: So I love this. I mean truly the, the question I just came up with was through our conversation just now and I'm like, okay, I think that's my new favorite question.
M: I like it. I might steal it. I'm just saying.
L: Do it, we all need to ask each other.
M: We’re always sharing guests. I figure we should have shared questions, too.
L: Which guests have we shared?
M: Lemonade. I believe lemonade, the dating app for chronic illness. He's a rockstar.
L: Yes, so Nico.
M: Love Nico. Awesome guy. Did we share a Bare Naked Bravery? Emily Peterson? Okay. I’ll send you her your name or Tara. I will remind her again because you guys will get along like a house on fire. I love her. By the way. Anyone listening, please go buy Bare Naked Bravery by Emily Peterson. She is so amazing.
L: I love it.
M: You two remind me so much of each other too.
L: She may have been, she may have nominated herself. I've got a list of people who have nominated themselves for the podcast so or who have nominated others. So there’s this great long list. My hope is to get through all of them. Actually, one of my goals is to interview. This is not a real goal, but like one of my heart goals is to interview every person in the world who has a health challenge. I’m not sure that that's going to happen.
M: I love your goal. Do you have a disclaimer? I have a disclaimer on my: Do you want to be a guest? That's big letters. I am sick. Please don't get offended. I am really sick. I may forget. I actually missed two interviews with the same guest because I had gotten like so many dislocations and like my painkillers are. Um, someone's got to explain to me why people do this for fun, but they are extreme and I can forget everything when I'm on them. So I felt so bad I couldn't even try to get her back on. And she was a really great guest. I was excited to interview and I'm like, oh, I messed that one up. So I'm going to go with Bob Ross. Mistake is now a bird.
L: That's right.
M: Happy tree. Happy Tree. There's nothing I can do about it. I screwed up. I messed up. It was my fault that I got to move on from it. I can't just self flagellate all the time.
L: So the reality of living with a body is that bodies are unpredictable and we can kind of count on that.
M: Some more than others. Yes.
L: Yeah. The nature of having a podcast about having a body that doesn’t do what we want. But I will say that I think that's one of the differences between where we're at in our health journeys is like I have a lot of physical ability right now and it is not beyond me that I don't know, you know, if that will last and, and it may and that will be awesome. And I hold that hope for myself, but also the awareness that I don't know. And it's kind of like your dancing story and your photography story. And, and, and how you lived, how you have lived your life fully as much as you can because you know, there's no given. And that's how I feel too. So it's, it is, um, I dunno, I know we're like joking and laughing and everything. And also underneath that there's this real tenderness in my heart when I think about how we can't commit, we can't ever really commit to always being available. And that there's a, there's a, there's something about that that's very human.
M: Alright. So I'll break your heart for a minute. One of the hardest things for me and I thought the hardest things were going to be professionally when I was younger. I'm not young now. Uh, so my focus is very different and my focus is very much on my kids. Like everything else can go to hell. Being a mom is something I take phenomenally seriously and any point where I fail at being a mom is hard. And having conversations with my 11 year old are very difficult because I just fail my kids a lot and that bites and having those conversations about that failing body with kids. Um, and trying not to scare them and then realizing that they're scared anyway, so telling the truth is better than letting their brain. And my kids are the ones who have told me this, they have come to me and gone, you know what, what I'm thinking is probably going to be scarier and what's happening. So could you just level with me? And that's how I parented. I stay right at the level. Like this is what's happening. This is why I'm forgetting important things. This is why when you're saying, do you remember when I did this? I go, ah please stop that. I love you. That's the best I can do is I love you and I will do the best I can from bed when I'm stuck in bed, but I need you to also step it up and do these things. So my hope is that I am making more empathetic children.
M: And they are empathetic kids. Please understand that my kids are amazing humans and they are very empathetic and caring, especially about the stuff. And they probably know how to do a lot more than most kids do. They know how to cook, they clean, they know how to do their laundry, they know how to take care of me, which is very sweet. The other day I ended up, I ended up on the ground a lot of the grounds and I are close. My dogs find it great, but I did end up on the ground because my rib dislocated while it was sitting so it was just curl and scream for help. So husband came in but so did my 11 year old who laid down next to me and grabbed my hand and she's like, I can't make it better mom, but I can hold your hand. And I was like, you are so far above and beyond where I was at 11. Like I am amazed, but I will say as much as I laugh and joke about this stuff, it's, you know, I'm honest about that. This is a defense mechanism because if I stop laughing and I stop finding this funny, the alternate is dark and I've been there.
L: Yeah, yeah.
M: I've been through a year of depression. It's dark and there's nothing that gets done or that I can move forward with.
M: So I choose this.
L: You know, what I think I want to say, acknowledged that you call it a defense mechanism and I totally get it. You're, you're using it to live your life and I want to call it a survival mechanism because it's part of how you thrive and it's a choice that you make two and it's conscious and your, because you're aware of it, you know, and there's something that I can really relate to in that, which is. I remember one time I was talking to my own therapist back in the day, um, about the concept of, you know, it was like, right after I had been diagnosed and we were talking about the potential of like, Oh, maybe letting myself grieve a little bit. And I was like, no, no, no, no, no.
L: And it was very early and she was like, well, what if you let yourself be sad? And I said to her, she said, what was so scary? What's so scary about being sad? And I said, I'm afraid that if I'm sad, I'll feel like my body is a jail. And and I think in many ways for a lot of people having a body regardless of whether or not we're sick or, or whatever can feel like we're in a jail. It's a very delicate relationship. And when I heard myself say those words, I was astounded. I was like, really? I'm really afraid of that. And it made so much sense. But what I realized was that I needed the time that I needed to let in little drops of sadness. Not all at once because I knew I would feel like I was bowled over by a tidal wave if I let it all in at once. And that's why to this day I say only feel as much as feels safe for you. And that over time we, we have an intelligence in us that can say it's time to watch netflix now. Or it's time to call a friend. Or it's time to tell jokes because we kind of have this internal awareness that we're not going to just sit around and feel all the time or never feel if we really pay attention. Usually there are little indicators in us. It's just sort of honing the skill to turn inward and say, what am I ready for now? What am I available for now? And what I found over time is yes, I've had some big breakthrough moments in allowing myself to feel the sadness and I've had a lot of really joyful moments and the best is when both can happen in the same day. And the truth is I don't think I'll ever be done grieving or I'll ever be done feeling super joyful because it's part of life. Like it's all of those things.
M: You hit on something so beautiful about what, like you don't have beautiful things all the freaking time, but when you're talking about like letting it come in and one drop at a time, you really hit on why I don't do drugs. I would so be the person who I am all about risk and experiment and try and psychedelic drugs would have been my thing except that I realized I was not ready for gates to be broken open and I had to go to. So I’m not gonna mention it this episode, but I've been through like major physical and emotional trauma that has nothing to do with my illness and with that came memory issues and I did not desperately want. If I wasn't ready to remember, I was not ready to like open flood gates. And so that's always been my fear about drugs. It's just trusting my mental state to know that how precarious it can be balanced sometimes not to mess with that and to allow it to, like you said, have the...The empathy to myself to like and trust in my own self that I will know when I need to phone a friend went to buzz out for a while. You know? That's. Those are all important to know.
L: And that's a decision that you make as your own gatekeeper. And that's what we are. You know, we are, we our…
M: How never ending story of you.
L: We are our guides in so many ways and where we are, our own protectors that, that can often be seen as like, oh, you're over protective of yourself. You have a shell. It's like you know what? You're going to have a shell for as long as you need to have a shell.
M: You know, denial is not just a river in Egypt.
L: You know, it's like let people have shells. Let people chip away at their shells. Let people never chip away at their shells. Just be who you are and know that it's okay for now to just be exactly as you are. And it's when we allow ourselves to be what we are, that we're able to get even more attuned with what we need. And so that's why we are our best protectors.
M: That, and we've become what other people need as well. So we are no good to anyone when we're trying to be a copy of something else that's, that's disingenuous and it doesn't actually make you the special thing that you are going to be. Just imagine if Jim Henson was like, you know what the puppet thing. Maybe not. Maybe I'd go into dentistry like don't just go, please be the dentist who does not scare me. But like if you think about like the person who's called to something that seems crazy and insane but could really bring joy, all right, imagine life without Mr Rogers. Like imagine without like that, that person, that wonderful person that we grew up with. I know that we don't have him anymore about what you at least have his videos.
L: Oh my gosh, totally.
M: Like imagine like I will just be, I'll play it safe. I'll be the good Presbyterian minister is meant to be. But he didn't share all that kindness and that caring and understanding of human nature of all the kids who are growing up to learn how to accept and like giving a really beautiful vision of what masculinity can be like. Come on like that would have been awful if you didn't like actually pushed forward into what he could really become.
L: Yeah. It's so true. I love that show. I still have my own internal Mr Rogers, like you know, all of our best teachers and mentors we have within us and we can call on them always.
M: Oh, when I get depressed, I go through. I seriously do this. I go on pinterest and I like a Bob Ross boats and Mr Rogers quotes. It usually happens right after I read the news or twitter. And then like the world paper bag, paper bag, a paper bag is like, I just read through Bob Ross and Mr. Rogers. I'm like, okay, well we're better than our leadership. The majority of humans want good. They've really do and I'm going to believe in the good of people.
L: Yeah. I love that. And I remember. Now I'm remembering you now you said make you be like Bob Ross and make your mistake a bird.
M: Yes, yes. I love Bob Ross.
L: Yeah. That's so sweet.
M: I hear you. When you say like, your body’s a jail. I was really lucky that I had amazing people before me and I had amazing teachers in how to be sick and I am for forever grateful.
M: I have them tattooed on my arm. All the ones who have passed away. I have...no one else is allowed to die. I'm running out of space. Please, y’all.
L: Everybody stay alive please.
M: Sorry. Um, but I will say it. This keeps going. I'm going to be Kat Von D soon. Not that that's bad. I'm just saying that's a whole different look for suburban mom. I did have incredible people before me. Who gave me incredible lessons. My father is bed bound. He's always taught me from the time I was five, he taught me how to do transcendental meditation. He always said that the only thing no one can ever take from you is your imagination.
L: Mmm, I love that.
M: Tough words for five year old, by the way, but hey, it worked. So..
L: Yeah, and it's beautiful.
M: When he got sick he was happy about it because he was able to let go because entire, like all of the physical things of the world and he was able to focus in on his mind, his writing and reading. So he's happy as can be. He's also working his tail off right now in physical therapy, trying to get back up again. So I'm really proud of him and I had my aunt who always believed in purpose and possibility and then when she went blind and she became too sick and when she was put in a care home, she ended up starting a club for everyone in the care home. She was like, no, we all need to keep living while we're breathing. And I had a very dear friend who is a comedian and she used to run a kickass comedy because when she was a comedian, and even now you can call any comedy club and they will say, Oh yeah, we have a woman in our lineup. And she started her own comedy troop. That was all women because she was so sick of that and she ended up with lung cancer and while she was dealing with lung cancer, she was still...we’re in America. She was dealing with her household was getting repossessed because she, her medical bills and I remember the last time I saw her, we went out and sat by a river in her house and we're just breathing and I'm like, how are you not panicking? I'm sick but I'm not dying and I'm panicking over everything. How are you? And she's like, I don't have time. So they might try and take the house. They can't do it while I'm sitting here, so I'm just going to focus right now and watching my grandkids and sitting here with you and enjoying watching all these kids play in the river and that's what we're doing right now. And I was like, oh my God. That got tattooed on my heart and my uncle just passed away from brain cancer and he was one of the best lessons in living with grace and generosity. And in the moment, and I'll just tell you this one story, because that's how I remember him, every single second, while he was sick, he would go, he lived out in the country and he would call my mom in the middle of the night because he loved opera and he would go out to his property, no roof. There is no house that got built there yet. And he would just take a sleeping bag and he would sit outside and play opera and watch the stars and he would call my mother and tell her, oh my God, Terry, look at, you should see this. And to me it's like that, that story of the monk falling off the cliff and grabbing the strawberry and eating it like or... Let's go with Neil Gaiman: “Never be so scared of swimming or never be so scared of drowning that you forget that you love to swim.”
M: That's so important to me because everything can fail. But right now we're talking. Right now, we get to enjoy this minute where we both have our faculty. Or close, and I'm able to sit up right now, which I wasn't two days ago and this is what we're doing right now. So I think if anything, chronic illness makes you the world's best Buddhist and I'm not a Buddhist, but I, it really makes you live in the now because what happened yesterday is not true right now and whatever power that be has no idea what's gonna happen next. So this is what we're doing right now.
L: I think that phrase, this is what we're doing now. It is like one of the most beautiful, pure prayers or, or, um, affirmations to remember to just, if I could just remember to save that.
M: I recommend tattooing.
L: Yeah. This is what we're doing right now...because it's always true. Always true.
M: That's how I get my daughter through her homework, which is like starting to spend. But we have this. I'm like, that's not what we're doing now. This problem is all that’s existing right now. This is what we're doing now. And that's what I do to keep myself from spinning. I have anxiety. And when I was starting to spin, I, I, that's one of my mantras, I have a ton of them and that's one of them is like maybe we could spin later, but right now that's not the task at hand.
L: Yeah. And our minds can, can take us to everywhere but here and our bodies are always here now.
M: But that can be a gift, too. And it's important to have that daydreaming time. But even when it's, oh gosh, it's so hard because I like, I was going to say, well, but we can always return our nightmares to something useful or something different or we can, we can change our nightmares. And then I realized some of my nightmares have been some of my best story ideas. So I guess that's how you change even those negative like whirlwinds into something is you can take. Even like, okay Neil Gaiman and can you tell I'm obsessed? I swear I'm not stalking the man. I don't even know if I can even speak if I met him or his wife, Amanda Palmer. Yeah. Another great book is the health book that she wrote, like How To Ask For Help was fantastic. Amanda Fucking Palmer. Do I get to swear here?
L: Swear it up.
M: Because that's actually how is she calls herself as Amanda fucking Palmer. But Neil Gaiman had this incredible thing that he talking about. Like when everything happens, when the worst happens, you make art out of it, like if the shark bites you and takes off your leg. Well then you're going to make a great shark movie. Like if everything, like everything hits the fan, but you take that, that's now your fodder. Like it might be awful. And I know I should grieve. I know it's probably something. I did go to therapy for eight years when I was younger. Um, and my therapist said it was the highest functioning depressive he had ever met. I don't think that was a compliment even though I take it as one, but it was um, he told me I was running so fast that I would be shocked when it all caught up to me and I was, it did catch up. But the way I got through that was medication and also learning to take the big bad dark, that...that really scary boy the space in between things and use it as creative fodder.
L: I love that. You're such a teacher.
M: Okay. Maybe I'll switch the storytelling to teacher. They both work together.
L: The best teachers are storytellers, and the best storytellers are teachers.
M: I taught for eight years. I loved it. I would love to go back, but I am too sick to. I like. Could you imagine me in the classroom and like trying to keep control and being like, oh, okay, well we'll just put that shoulder back in. Either they would love me because I'd be the biggest badass and history. Like relocating my limbs while teaching them. They'd be too scared or it would just be traumatizing. I don't know which.
L: And it takes me back to what you were sharing about how you talk to your children about the realities of having a body and how it can be very tempting, especially to tell the young ones. You know, everything's gonna be okay and life's going to be great. And the truth is, you know, I think that when we teach unpredictability, it is the best resilience tool that we can give and it's, it's this loving honesty that you've brought to your children sort of out of necessity, right? That has allowed your daughter to come in to the room and lie down next to you and hold your hand and say, Ooh, essentially this unpredictability is happening, but we're in it together.
M: So I'm going to give you the world's best parenting advice and I'm going to distill every parenting book down to one sentence for you. And that is we did not prepare the road for the child. We prepare the child for the road and I don't think there's anything truer than that. Because as anyone who cares about anything, you want to wrap them in bubble wrap. Like that's your first instinct because they come into the world with only one ability, which is to learn and listen to you. That's it. That's all they got. Like they can breathe and they might be able to eat. Maybe. Maybe, but they are able to hear us and listen to what we're telling them and they are learning how to process our language much faster than we think they do, but there's nothing else that you think, oh my gosh, I've got to wrap them. I've got to wrap them up in bubble wrap and never let them do anything because I'm responsible and this is a big thing between my mother and I. Here's where things get entertaining is when you're in your forties and suddenly your body has made you as capable as someone who's like 13, like you can't drive. You can't necessarily remember to get to the doctor's appointments. Remembering to take your medication is an iffy proposition. Did you remember to turn off the oven burner? Because that's happened. Um, all of these things where you have to become incredibly humble and now your parent who you thought, okay, we're going to an adult relationship now finally after 20 years. So we're finally on the same page and no. now they have to drive you to your appointments. They have to remind you of your children's appointments. They have to remind you. Did you remember to feed your chickens, like crazy humbling.
M: And the discussions my mom and I have had, especially with how unpredictable things are, if she wants to wrapped me in bubble wrap, stop going for walks. Even when you feel like you can't, don't do that, you can dislocate, don't do that. You could dislocate and then we had to have a lot of teary sometimes yelling but very honest discussions of a, yeah, I might break. I absolutely will. I promise you I'll probably fall down on the trail once or twice, but if I don't do this, my life becomes very narrow and teaching my mother that taught me how my kids are thinking of how I'm bubble wrapping them. So it's. That was actually brought up to me when my, my son was like, so I want to move to Washington right now, and I'm like, no, I'm not ready. I was like, yeah, grandma's not ready for half of what you throw at her or when you're a teenager. I'm like starting to you for being so. Right. So it's this incredible level of trust you have to have in yourself and others.
L: What you're talking about right now reminds me of one of my favorite songs. I'm getting chills right now. I think like you days after I was diagnosed, I was out at this concert and a musician got up on stage named Scott Ferreter and he played the song called “What Peace” and he has this line at the end that goes and it reminds me of you both because you talked about sharks and because you're talking about falling on the trail and how you put yourself so fully into your life despite the risks because you're living out your heart's call. He had….There's a line in his song that that goes “On a perfect dark night. Give your body to the water and look up at the sparkling sky. There may be sharks in the deep and they may take your life, but baby you were born for swimming.”
M: I love that.
L: What does it mean to you to live a fulfilling life and has that definition of fulfillment changed through your health journey?
M: Dear God, yes, and not just health journey. I mean, oh my God. When you were like 16, fulfillment was very different then, it wasn't funny and then when you were starting a career you thought was going to be a career for life. That's very different than when you're like, you know what? Maybe there's other things here and I'm not necessarily sure exactly what is fulfilling to me and I'm really trying to figure that out and I think it's the most honest answer I can give you. And before it was like, I want to be the best dancer ever. That's the, I don't care if I have, I have flare out at 22, I will dance, I will be the dancer. And then that wasn't possible. And then it was, well, I'm going to be the best mother ever. Well, that's not a realistic goal. The best goal I have is that my kids know for an absolute fact that I love who they are, not conditionally. I love them who they are as they are. I love that my mother always liked them. Please understand there are moments where I am ready to, um, lose my ever loving mind in the middle of an argument with them, like is not always a given, but I love who and what they are and that's not conditional. I thought that there was, I was going to be the best wife. Yeah. That there are two other people out there who have been married to me, besides my husband can attest I am not a great wife and there's a lot of things I want to be the best at and now I'm starting to realize best is not a goal for me. I don't know if it's a goal for y'all, but is not a goal for me. And I listened to a lot of podcast. I love podcasts. I love your’s.
L: Thank you.
M: I listened to, um, Tim Ferriss, his podcast every once in a while. And I find that super inspiring sometimes. I interviewed the creator of Dilbert who said that there is this trick of how he got to where he was, which is he wrote down his goal over and over and over again each day and it just started to magically happen. I don't think it magically happens. I think that just sort of laser focuses your intention, so when you start to fall down and forget to take advantage of the opportunity, you're focused enough to take advantage of the opportunity. I don't think it's magic. I just think that's focused. However, getting back on focus to that point was I was like, oh, well I'll do that for. I want to. I want my books to be on the bestseller list. Well, I don't know. I don't know if that's important right now I'm really sick and I'm struggling through Nanowrimo, which does national novel writing month, and I love the book I'm writing. It's my first novel I've ever written. I'm exhausted. I don't know if I'm going to get through it. Um, and I don't know if it's important anymore. I wanted my kids books to be really important and be classics and I liked that. I just don't know if I really want to put all my focus there right now. I want my podcast to be popular because I really think that these discussions that you and I are having, these discussions I've had with other people educate others on the crazy things a body can do and how we who are sick and are not able to be out in the world, we still have things to say, so they’re all reasons that I think are fairly good, but I don't know where I want to put my focus at the moment. So I don't know if I really want to write like a thousand times. Can't write a thousand times, but I don't know if I even want to like mentally focus a thousand times on like I want to be at comicon next year. Like touting my fantasy young adult novel. Like I don't know if that's who I will be at that point or what I want. So I'm sorry. That was the long way around to an answer of I don't know what's fulfilling me right now. I don't know. I think at the moment maybe my daughter's candy stash might be fulfilling me.
M: Trying really hard to stay away from that. And at least be honest, when I asked for it, I'm not taking it without asking. She's too smart for it now. But fulfilling is to seriously honestly, for the first time in my life changing day by day, I don't have a goal. I am rapidly as a pitbull holding onto. And that scares me so much.
L: Well, I just want to let you know you and everyone listening is, you are allowed. We're all allowed to not have a goal today.
M: Am I allowed to not be inspiring?
L: You're allowed to not be inspiring. You’re allowed to just be.
M: Isn’t that the job of a sick people? We're supposed to be inspiring, right?
M: Every moment of the day. You better be inspiring the rest of us. That is your dues that you are paying.
L: It's like, thank goodness we're not what we do, right?
M: Give myself an out in the world, you know?
L: And it really is such a deep truth. It's such an important one.
M: Just because it's true. It does not make it a survival mechanism.
L: Do you have any funny stories from your health journey that you'd like to share?
M: So I was, I have POTS, so my heart rate changes so fast and my heart rate went to 200, which meant I was on the ground. So standing on the ground. Now I have what I call my dire wolf. He is a 90 pound beast of a dog who was convinced his only life's purpose is to protect me. That is the only thing he thinks he needs to do in the world is to make sure I'm okay. My 90 pound dog’s idea of I am okay. It's human stands badly human, not sanding. I will lay across human to make sure human does not try standing again. I am saving you. And I was laughing so hard as this dog is like crushing my windpipe that I couldn’t even call for help and he was so proud of himself. He's like, look, I made human stay. Human is staying safe. I will keep human safe, he is the biggest lug of a dog.
L: Awww. That is so cute.
M: That’s my story.
L: It's totally. It's like when you try to help someone out, you have no idea what you're doing, but you're just trying so hard.
M: And he’s so sure he's doing the right thing. He is absolutely certain that if he lays across me or gets in my way from walking, he is helping.
L: Well, if it weirdly started snowing in that moment. Inside your house, he would have kept you warm and safe.
M: That's his whole purpose in life. It's so cute. He'll even like, if my husband gets near me, he will nose him away like the kids noseo them away. He’s always like, no. My human.
L: Awww. What's his name?
M: His name is Kirk, Captain Kirk and I am a geek and I did not name him. He came in a litter, as a star trek litter from the rescue. The rescue is called Dogma. Shout out - they're awesome and they named sci-fi show litters.
L: That’s adorable.
M: So we the star trek letter. This is Captain Kirk and Oh my God. Confidence. He has overconfidence. He has no boundaries and he's always rushing ahead.
L: Thank you so much for telling me these stories. I loved hearing them.
M: You have to come to the farm and meet the wolf and the pug and the chickens and the cats.
L: I would love that.
M: All the other wildlife that we have here.
L: What do you have now that you might not have had without your health journey?
M: Wow. Resilience. I don't think I have a better survival mechanism than that. I don't use the word faith lightly and I don't use it religiously. Cheers if you're religious, whatever is your thing. Um, but for me, faith is what my grandfather who was very religious said it is a belief in something you cannot prove. It is an absolute step off the cliff and just trusting. And that is what I have in my self. I have absolute faith that will get me through the darkest of the darks that, that will lighten eventually that I will find my way to telling a story a different way. And I think that's probably the most recently. I mean, I can go through like all the fate and kismet of like my world has led me to my husband who is my best friend. The love of my life is still makes like 12 years later and we're still nauseating. We still are gross and I could talk about my kids all day. They are my absolute touchstone into life. I love those two so much I can talk about your pets, I can talk about so many things, but if you really want to know what my illness has actually given me that that specifically gave me, it's resilience and faith in that I will always find another way to tell a story.
L: I love that. It's so. As a side note, I want to say I was on this podcast called Building Resilience and she asked me at the beginning, what is your definition of resilience? And I said, for me, not for anybody else. For me, my definition of resilience is being able to tell myself a beautiful story about whatever is happening and I can't believe you just said that.
M: That’s awesome.
L: Because I just, I was just, I totally support that definition.
M: I got this therapist sanction. I feel like really proud. I feel I cannot afford therapy right now. I feel like I just got like that. No, no, you're doing good. It's okay.
L: That is so cool though. Like I never would have guessed that we both see the storytelling piece as being so integral in, in resilience, but that's a lot of it. And like your dad said, the only thing that no one can take from you is your imagination and that's so in line with how you live your life.
M: Yeah, he is. He and my mom are huge, huge, good influences.
L: So cool. And so, okay, the last thing is…
L: So finish this sentence. This is not what I ordered….
M: This is not what I ordered, but I have faith that I will find another way to tell a story if this does not work out.
L: I love it. It's like you didn't get the thing you ordered…
M: I passed!
L: You passed the test, but you're gonna you're gonna make what you can out of what you got.
M: That's pretty much it.
L: Right. And I'm still going to take away from our conversation a lot of things, but one of them is that I'm supposed to get a tattoo that says this is what we're doing right now. I guess that's what….
M: You're getting a tattoo, right? I mean this is. You can just go down the street in San Francisco and it’s like starbucks over there.
L: I bet they have like an app that you can use to get somebody to come over and give you a tattoo.
M: I think you just got silicon valley really excited because no there isn't and I think you just made the newest new ap: Uber for Tattoo artists. Oh my freaking God. Go get a venture capitalist right now. I'm actually serious. That would work.
L: I'm not sure that's going to be the dream that I follow, but I hope somebody does it.
M: Make sure that you get a piece of it.
L: Right. Thank you so much for joining me today. It was so fun talking to you.
M: Yeah, and we're going to have to do a panel on what you do after diagnosis to create something new. So you're going to come on my show and you can absolutely really sit on yours as well at the same time. No problems, but we're going to do a panel on that.
L: All right, sounds good. Count me in.