EPISODE 31: Life Is Living Us
with guest Allison Sattinger
Lauren Selfridge: So thank you for being on the show with me.
Allison Sattinger: Oh, you're so welcome.
L: I'm really excited to be sitting in your home right now. Can you share a summary of your health journey?
A: Yes, I can. When I was at say, like maybe 19, I was in college and I got such a crazy bladder infection and I remember I was working on a play at the time and like I almost fell off the stage. Just like passed out and I thought I was going to pass out and we went to the ER and it was… I had like a really serious bladder infection and I didn't know because I didn't really have a reference point for that. And so over the course of the next, I would say like three or four years, I had what I thought at the time was infection after infection after infection. I, as we discussed earlier, I had catheter treatments every six months by a urologist to widen the scar tissue that was in my bladder from all of those infections I was on like crazy amounts of antibiotics and then those didn't work. Then more antibiotics. And yeah. And then I was uninsured after I graduated from college and my father's Cobra, you know, like I had this window of time where I was still insured. And then um, I bought this book called “Prescription for Nutritional Healing,” and it’s huge. I still have the same edition. It's probably way out of date at this point. There's probably so many more things you can do nutritionally. But it said like there's homeopathy, there's all these herbs that you can take. And so I started, the urologist had said, “You will never not, double negative, you'll never not be able to do this.” Like you will always have to get your catheter in every six months for the rest of your life or you will or your urethra will close up. And isn’t that so bleak?
L: Yeah, that’s so bleak. So you’ve have been told definitively that it's, there's nothing.
A: Nope. So I started taking a homeopathic remedy called cantharis and I started doing all sorts of different herbal supplements whenever things got a certain way. Like cranberry was a big thing. And eventually it was, I think last two Septembers ago, was the last time I'd had a bladder infection. And the first time since like my mid-twenties that I'd had one and then when I had the bladder infection two years ago, it was super valid, like it was a bladder infection. I took a course of antibiotics and then I felt like I still had one and I went to the doctor and I described all these things and she said, you have interstitial cystitis because there's no-- when we run the tests on your urine, there's no proteins, there's nothing present that says that you have a bladder infection. And so I looked back on my twenties and I wondered if maybe the whole time I had just been having like an ulcerated bladder wall, which is basically what it is. So then it's interesting, those points where I would have what I had now come to understand as interstitial cystitis, were deeply stressful times. And two years ago we were moving to Seattle. Things were a little strained in my marriage. And I mean naturally like you're, you're moving two states away. And so like my stress level was so high. So again, not surprising.
L: Yeah. So the stress would impact your physical experience?
L: And then somehow you found a doctor who said, “Hey, wait a second, what we've been, we, the medical community has been treating you for, for all these years (or at that point in time for several years) was not the right diagnosis.”
A: And that even like she went so far as to say that back when I was having all these problems, it wasn't necessarily a diagnosis that they would even entertain or like go to.
L: Wow. So what was it like for you to kind of take in this information about this diagnosis?
A: I felt so heavy. I went and I looked on boards now like health boards online, which I totally empathize and like I'm so grateful for a certain type of person that's not me…
A: ... to be able to find a place where like-minded people who are also suffering can like just vent or try to find solutions. And it was super helpful. It actually led to a lot of relief for me. But I, you know, I went searching and all I found was like how much worse it gets, how it's unmanageable. It was so dire and I was like, “Oh no. Oh dear.”
L: Yeah, that sounds really discouraging.
A: It was, it was very discouraging.
L: So in this case, it sounds like those boards that you're going on had the opposite effect.
A: Yeah. I just really felt like I was looking in on like a community of people who are very comfortable with each other. Like underneath all of their, whatever they were talking about on any given day was um, like a list of the medicines that they take in and it would say -- and I think that a lot of boards do this where it's like... I, I know when I was looking for Kelly when she was starting to get super, super sick, I like would look on the breastcancer.org site and they would like give their history of like what chemo they'd done and radiation and like how a reoccurrence or whatever, what stage they were. And so this was very similar. It was like diagnosed this time, tried this, this, this, and this didn't work. This worked, was on this until this day. And I was like, in looking at that, I was just like, “Oh no, I'm not going to get better, like I'm going to be…” it seemed like a lot of people were really stuck in like a limbo of trying something that didn't work. And I was very scared.
L: Yeah. Oh Man. And you went and you just mentioned Kelly. And so for folks who don't know, Kelly,
A: Kelly was… I don't even know how like Kelly was that, that's just like, that's the sentence, right? She was an artist and crafts woman and one of my best girlfriends and she died of metastatic breast cancer. She had gotten her diagnosis initially of breast cancer when she was 29 and then was treated chemo, radiation. And then she was diagnosed with metastases a four years later, I think three or four years later. And it was treated with trial drugs and, and finally died last summer, uh, in the middle of July.
L: Yeah. When I was coming here, when I was thinking of our interview, she's been part of it in my mind this whole time. And I never met her. I know her through what you've shared online and what her beautiful community that you're a part of has shared about who she is and she's clearly left this amazing impact and legacy. Yeah, and it does feel like when you said that, I that thought, it felt like there aren't words to really do justice to the magic.
A: No. And if your, if your listeners want to find her work, they can go to… I feel like it's silly to say www dot. Of course it's http://www.umberdove.com/ and they can read her blog entries which are gorgeous and see her work that she had done. She was a… she did painting, she did leather. I taught her how to tool leather. It's just so brilliant. She would like, you know, “Is this what you mean?” And she'd hold it up and it would be like so beautiful already. She was bright, super bright, so full. And a metalsmith. So we had a lot of shared shared mediums.
L: Yes. And a poet and a writer. As are you. I don't know if you claim those titles, but I'm just letting you know you're a poet and a writer.
A: My mom would agree. She'd be like, “Oh Lauren, I've been telling her to write a book!”
L: Because you both express yourselves in this really defined way that, when I read it I feel more alive and I feel more connected to my heart. And so just sitting with you and you're telling your health story and that's like the technical format of the podcast and I don't think that we can tell your story without Kelly's intertwined way of being in your life as well. Right. You know, so.
A: And also like it's a story about stress as much as it's a story about the body. Right? And like the, the symptoms or whatever. And she, her passing also like precipitated another wave of like “What's going on in here?” It's huge.
L: So I'm going to ask you questions, but I wonder, you know, as you share, you're welcome to also share like how your friendship with her and her passing has impacted you. So it's both. How has your health impacted your life and how has her being this impacted your life? Um, how did, how did the two of you talk about your bodies together?
A: I was very, I always felt very careful with her because she was so private and she was so stoic that I, in looking back I almost wished that I would have been um, a little bolder a little sooner, but I would ask her questions and like I remember one time we were at a coffee shop and she was telling me about her allopathic doctor, like her oncologist, her naturopathic doctor, this wonderful healer that she was working with. Another one of our dear, dear friends Robin, who also… Are you familiar with Robin?
L: Robin Sandomirsky? I just know her from her website. She's got this amazing website,
A: But she's like, it's so hard to even say exactly what she was to Kelly. They were like best friends and also she would help kind of like ease her journey, kind of like a map maker for her. So she had all these people in her life and Robin was very death-positive, which I love that. It's actually a term now. I love that. It's so perfect.
L: It's important. Do you want to just do your own definition of what death-positive means?
A: I guess I hadn't even thought about what that would be like dictionary-wise. I think like, like down to have death be a part of life, like down to like ride that ride. Whether it's somebody you love dying and instead of shying away from it, being a part of it or like, actually being willing to touch base with the fact that you, too, are going to die. It's, it's everything. It's everything. And our culture is so sick that like it. It's like, no, no, no, it's over there. It's in a room somewhere in a hospital. Like it's very far away from you. You're very young and you need to buy this thing and I'll live forever. Totally.
L: And on Robin's website she talks about, she refers to it as death medicine, being a death medicine keeper or something like that. And it's taken me awhile in my life journey to understand how chronic illness that isn't terminal is still connected to my understanding of my own mortality because it, it reminds me that I have this fallible body and when I'm willing to take that all into my heart to process it, my life is more amazing. So all of this is to say death positivity sounds like a great idea. It's different than saying death is a good thing only or we should all die soon or you know, it's not like we're saying, you know, we're not encouraging death.
L: It's just that death is inevitable. And so being willing to say how do we make sense of that in our lives? And like you said, kind of lean into the wisdom that happens when we're a part of that process with our loved ones.
A: Which is like a stunningly beautiful process. Like holy moly, it's impossible. It's like every moment is impossible and you're just like, you're like sailing on this tiny boat and these huge swells and it's impossible. And yet. And yet, like I remember last year, gathering with her girlfriends, we would have like these Zoom chats and we would just check in with each other all the time and all of us would be like, “How are we doing this? How are we missing her so badly today?” Or like “How are we living without her,” you know? And yet it's such a good.
L: So what we do, I mean, how do we live without somebody who is so important and so big.
A: I think I, I think I have like an inkling of what my answer may someday eventually be when I'm wise enough.
A: I feel like it's like, um, it is a new relationship with that person. You are still in, you still love them and you're still in relationship with them. However their body being gone… Like I thought when she died that it would be like I would get signs from her constantly and she would be in such close touch with me that I'd be like, “Of course she's still around.” And there was one thing that happened. She died on the 14th of July and the next morning I got home really late from her house where we had like decorated her body and tended to her and sung to her and... I cleaned the dirt from under her fingernails, like it was so beautiful and so, so necessary. But we spent 12 hours with her before they came and we like drummed. There was drums and singing and like it… it was amazing. And petals. Flower petals. She was very well adorned, but I came home, went to sleep, woke up the next morning, Orion, you know, kids are still like so able to see and touch those mysteries that, like as adults--and imagining if I had recently died and like I'm trying to penetrate the defenses of someone who's like so in, you know, uh, something so ingrained in them like there's only life and death. There is no afterlife. And so Orion wakes up the next morning and he was like, “Mom, I had a dream about Auntie Kelly.” And I was like, “Oh, what happened?” And he said, “Well, she just told me that she loved me,” and I was like, did she say anything else? And he said, “She said she had to go have quiet time and so she had to go,” but like he woke up with that very clear thing and… in the months that followed, I didn't get like a sign from her saying like, “I am still here.” That was the thing that I would cling to as like-- there, that felt very real.
L: Yeah. So the relationship, I mean there's everything that you just said makes so much sense. You said the relationship is still there.
A: It's still there.
L: It changes.
A: Mmm-hhmm. And I have to still find a way to like relate to her and sometimes that's getting very silent and sometimes I wrapped myself in a sheet and I go sit on the deck and I just like… talk to the Kelly Moon, which is really sweet and it's painful, you know. It will, there will always be a part of it that hurts. I don't think that that's supposed to be eradicated. Like sometimes I love my son so much it hurts sometimes I love my husband, my sister and my mother, my father. Like there's a lot of love in me and so I can't, it will just keep evolving with her and eventually I'll be maybe an old woman, we don't know, and I'll be like closer to her than further away. Which for right -- as soon as she died obviously like I could get hit by a bus tomorrow -- but in terms of like the norm, I should….
L: --- life expectancy
A: Yes, exactly like the median, Blah Blah. I'm very, very far away from her from the immediacy of her on that timeline, but that, that's something that I'm kind of excited about, you know, whenever I am on the verge of something to be like, “Oh...”
L: When you're on the verge of…?
A: … Of dying, like she'll be closer.
L: There's one gem in this that “I'm real -- that I've known for a long time and that I’m heading towards “when my time comes.”
A: And hopefully at that point maybe there'll be more gems that might be. Yes, parents are up and.
L: Wow. So you were mentioning, you were talking about how you talked about your bodies and how you… kind of how you've made sense of what was going on.
A: Oh yeah. Like the day that she was telling me about all these healers and all this health that she had and everybody was like, life, life, life, life, life. And I was like, Kelly, who's talking to you about death? Like who's your death person? And she was just like, “Will you be my death person?” And it didn't come to pass that way. She wasn't like, into the idea of dying. She fought hard and animalistically like she would not let go of hope and she was not ready to go and that's how it was, which I think is just as beautiful as somebody being at peace and completely ready to like accept where things were. So I had to like sneak in the death conversations, like when she wasn't looking.
L: But it really is like medicine. That death medicine that you seek in with the macaroni and cheese.
A: Yeah. I would be like, she would be afraid of something and I would say--because I felt the veil was very thin and I was like, “Do you want me to tell you about the people who love you on the other side and what they're saying about you?” And she'd be like yessss. She couldn't breathe very well and so it would calm her down and I would tell her about these different beings that loved her and like what they looked like and what they sounded like and what they were saying and like how they were loving her right now and it was, it was the way that I got that medicine down her throat without being like, Tada! Death is imminent
L: You were doing a form of storytelling.
L: How did you find these stories?
A: I pulled them out of my heart.
L: They just were just there.
A: Totally. They were super ready because it was like I, I loved her and I want it to be of service and I like, I knew that I had that to offer, but I'm not a storyteller so.
L: [Sarcasm] Sure, sure. [Laughter]
A: What were you going to say though?
L: I think of it almost as a translation in a way. Like you're, you're tapping into your heart, which the heart doesn't necessarily speak in words, but can communicate with us and we can translate it into words I think. When you spoke of jumping into your heart to find these stories, it probably, I'm imagining was like a felt sense of these beings and you putting words to them for her. That's wonderful. Now did you... I mean I know that it is and isn't disparate that... So she had her journey with cancer and now we're also talking about you and your journey with your body, interstitial cystitis, and the fact that you know you're going to die someday anyway. Like how do you... What's the story that you tell yourself about all of this in your life and with your body?
A: Mm, that's a great question. I think I can't talk about that without talking about spirituality. Like
L: Do it. Let’s do it. [laughter]
A: One of the things that I've been working towards is I'm accepting that my thoughts are not the final thing, that there's like something that I can't see that's woven into my life because if I, if I follow my thoughts only it gets very confusing. Fear disguises itself as instinct. It's like “Look at me and my instinct mustache. I am...I'm really instinct. I'm not fear.” But then it'll like peddle these tales that are just like so bleak and I'll believe it because it told me it was instinct and like instinct has saved my hide--and so has fear I'm sure, but yeah. Like I, I'm... all of it feels like I can't separate out all of the endless hours spent googling. Like those moments of feeling so out of control and like trying so hard to… I've come to this place where I kind of feel like life is living us like. And what I've tried to do ever since, especially since Kelly got sick, is like redirect life living me to be more palatable for myself. Could it be less messy? Can I just shift this? I'm just gonna... and so what's ended up happening is, if I would've just surrendered the whole time, I would have used a lot less energy trying to shift life to the left or to the right of where it was going--so that I could like pretend that I had some control. This is after decades of reading self help books that are like “You can change anything you want!” And like, yes, you can not smoke and you can eat healthy and you can think positively, which I do believe has a really powerful effect. But life is still going to do its thing and you can't… like I don't believe if you looked at the overall picture that you'd be able to say like, “Oh yeah, I really moved that chess piece” because it's just doing its chess piece thing.
L: So like, really you're talking about a certain, I don't know, a welcoming spirit or a, a letting go of…
A: Of letting go of an attempt to control life.
L: Right? And then I love the mustache.
L: I like that fear is disguising itself as instinct and the instinct mustache. I like the idea that our instincts have mustaches, so if something wants to disguise itself as a mustache in anyway…
A: Tom Selleck
L: Yes, Tom Selleck has a mustache and therefore must be an instinctual being up. Umm… So what are we talking about? I don't even know anymore, but it cracked me up when you said that because I needed to hear it. Like we have fear and fear is part of what protects us. We have it because we're, our bodies are trying to survive. So we go into fight or flight, the part of the brain that wants to protect us is in this survival mode. And so then we have all these fearful thoughts that come up and that's where we try to control things from. I mean that's just the bottom line and that's not usually needed unless we actually are in a life or death situation, which is very rare.
A: Very. But not to that part of our brain. Right? Like the shower that I took this morning is where my death lies. Like to that part of the brain.. what is it? It's like the amygdala or the something. Like your little reptilian brain. And if I check that part, if I'm like… so I've been using Headspace, the app for meditation
L: -- so good.
A: So good. And I have to like even, those really bossy thoughts, I still can say “Thinking!” like gently touch the feather, like thinking or feeling. I don't have to go necessarily on that enormous roller coaster ride with that particular thought and follow it to the very end and at the very end of that fearful amygdala-based thought is... terrible things. Like everything's bad at the end of those thoughts, right?
L: It doesn't really work itself out, but we get on this treadmill, and it tries to find an answer. And so what you're talking about is trying to find that discernment between “When or what do I actually need to control or create in my life?” versus “What is it that I’ve been allowed to move?” I'm almost picturing a river of life... living you. You like this flowing way of being in it, that it doesn't stagnate. It keeps moving. You can't go back and you're riding on this, or swimming in the river. That's really beautiful. So from the, the remembering back, the heaviness of receiving this new diagnosis and having...
A: Did you--like what happened when you received your diagnosis?
L: Um, I did my emergency response plan, which was “I want to be positive about this,” so I wanted to stay buoyant. And I knew that I, I think I had spent a lot of time preparing for this unknowingly. I didn't know I was preparing for MS, but in my own spiritual development, realizing, “Okay, uh, most of life is out of my control,” you know, like I can, I can play with my thoughts, my intentional thoughts versus my reactive thoughts. Uh, and so I thought, “Well, since I have control over my approach, that's what I'm going to… That's what I'm going to do.” And at the same time, I knew that I wasn't ready to just be like super public about my health stuff. And so I gave myself time to cry or be in denial… time to grieve. But it was, it was a mix of things. It was a mix of learning new parts of myself amidst what I had already known about myself. So it was almost like, now I get to really put the spiritual development to the test.
A: Oh yeah.
L: Not that I was trying to test me. It really was like, “Oh wow, this stuff that I thought I would have… I thought I would be resilient in a difficult moment and now I'm seeing that I am. Cool. This is good for my self esteem.” And also the other end of the spectrum was “This is really bringing me to my knees. There's so much that is out of my control.”
L: Yeah. What about for you? How did you, how did things move forward from your receiving the diagnosis and your heaviness to, to now? Not to say that now is the end!
A: Right, right, right. Um, well, like the interstitial cystitis was kind of one of like a raft of symptoms that would just kind of--I know he had mentioned it earlier, like, like--a whack a mole of like heart palpitations or this or that. And so, um, I think I just took what I could do, which was to try diet first and I found that I was actually able to manage it with diet and it was pretty strict at first and then eventually I started to realize that it came when I was ovulating and it came when I had my period regardless of what I ate or didn't eat. So like all these things being linked--hormones and stress and like cortisol, adrenaline, estrogen and progesterone--like, so it's like a soup of things. And so I ride out the waves of when it comes and I, um, I just try to be gentle. I guess that's the one thing I keep coming back to is gentleness. And then like when I think I'd been gentle enough, I should be even more gentle, but I'm still not there yet. Like…
L: I love that. It's like how much more gentleness can you take? Because there's... so we say we're ‘giving ourselves a hard time.’ It doesn't work. If it did, it would have worked by now. So it's like that same kind of concept is “How can I be more gentle? So however gentle I have developed a threshold to embrace. How can I be even more gentle than that? How can I expand?
A: And understanding that it's not going to be perfect too. I've been meditating in earnest for a few months and like I have these peak moments of great beauty and then I have moments like today where I found out that we have some fleas and I went super dark super fast, you know, like…
L: Nobody wants fleas!
A: No. Of course I didn't like that whole thing of you know… we are on this, on this journey towards like betterment or gentleness or something. But we're also still going to just kind of fall apart or have a lot of challenge in the midst of it. And it's kind of, it's, it's humbling to have something that kind of smacks you down a little bit. Even if it's just a normal day to day thing. Like you have all these Jenga pieces and then like this one little thing, like a fly lands on everything and…
L: Like a flea! [laughter]
A: Like a flea, yeah. And you're suddenly like, “This is too much.” It all becomes too much. Suddenly.
L: That's so… That's so true. So we're still human.
A: We are and were so divine too..
L: So that divinity and the raw, like we have fleas. All of that is part of being alive.
A: Mm-hmm. And if I can remember in those moments, like to be curious about what's happening instead of “there's a perfect and there's an imperfect” and if I fall on the imperfect end of the spectrum, like terrible things are going to happen. But if I remember that this is an experience and I'm on an adventure and it's not like then that, that voice of like “It's just gonna all get more terrible and you're going to be, you're going to drown in fleas!” or like whatever that voice leads to, which is always that darkest place. There's that other aspect that's like, “Oh no, I'm, I'm on a raft going down a river and life is living me. And I'm on an adventure, so what's next?” To be able to get to the place where--without being cocky but to be like-- Bring it! Hit me with your worst. I've got this! Instead to be like… I'm, I'm ready. There's um, there's a book called You Are a Badass by Jen Sincero and there's this phrase that she said that it was like, I'm, “I'm ready. I'm willing” or something. Something to that effect. “Please show me how” as her prayer of like, I'm here and I'm here to do your bidding. Just show me. Just point me in the right direction. And I find like when I do that, like things move. It's really power.
L: Ooh, okay. Well that's a little back pocket…
A: And I'm available. Please show me how--that's what it is.
L: I like that. I'm going to just keep that with me. Would you be willing to talk a little bit about your art and how, what role that's played in your, in your journey with your body?
A: Oh my gosh. It's like, it's, I can't, it's like a bone, you know. It would, I would be lost without it. Um, I've made art since I was a little kid in different forms, visual art when I was little. I wanted to be an architect and then I started singing quietly in my bedroom and my mom heard and so I started getting voice lessons and then I went to school for musical theater and wanted to be onstage and then went to be a singer songwriter. When I saw that that lifestyle was hard on a person and then released a couple CDs and then started tooling leather after my day job as a receptionist and feeling that it didn't have so much of, like a heavy… The music was heavy for me because it was like “I’ve gotta succeed!” And then I was like tooling leather to relieve the heaviness of the day job and the music. And then I was like, “Oh, I'm gonna, I'm gonna do this.” And then I did a couple of professional voice overs and had a nest egg from that. And then I started Sunny Rising and I started tooling leather and I just wanted to make cuffs like Andre 3000 from Outkast, like he had these awesome cowboy cuts and I was like, I want to make those. So I tooled cuffs and then I just, I started following that creative urge. I let music go. Um, there's probably still like, 5 people who are mad about that…
L: Count me as one of them because I loved your music sooo much!
A: Someday. Like I keep saying someday I will. And I do…
L: I'm not actually mad by the way. But when you are truly in the moment and you are captain of your creativity, your urges do change. That's part of being in the moment is if “I stick to something that I've always done just because I've always done it because I'm good at it and because whatever, then I'm maybe not being true to what I need in the now.”
L: And so for you, you just happen to be a really excellent musician and then you're like, well, I'm just going to happen to go over here and try this.
A: They say what you did when you were little is what you should do, like the first thing you loved to go back to that. And so the first thing I loved was drawing these crazy cross-eyed women. It was like this character that I drew. And then also like building legos and wanting to be an architect. So interestingly enough I have combined those two very first loves into what I do. I build things out of metal or out of leather. I cut rocks and make them, put them in a little house of silver. It's amazing. Like I can't believe I get to do this and it's not always like a barn burning year of sales, you know. But like still I can say that I earn my living doing this thing, which always feels kind of surreal.
L: Yeah. That is so cool. And it is. I mean, I do think about living a big full life as not necessarily being defined by whether or not it's a barn burning year of sales. Right? And if it was, then you'd probably be doing something else that made more money.
A: Mmm hmmm.
L: Um, something in you chooses to stay with you, it fills you. And even though it's not like this hugely lucrative thing at this point, we never know.
A: I mean it's fine. Like when we both put into our monthly, like joint account for a long time… I actually had to earn kind of an, a ridiculous amount of money for art to be, like every month this amount of money is going to go into this account because I made art and I had to be creative…
L: Like going towards your art supplies or?...
A: No, no, no, like going towards our budget to live, we had like all these extenuating financial circumstances and I came from a family where the male is the breadwinner and my mom would have smaller jobs or like way less paying jobs. And so like I wasn't putting in as much as my husband was, but like I was really, uh… you know, with an infant, with a toddler, like really making art work and being fox-brainy and crafty to get that, that amount to come in every month. Holy gymnastics, Batman.
L: Intense financial gymnastics.
A: Mm hmm, so yeah. And since we've moved here, that pressure has been off and so like pulled back and allowed myself to maybe live and take care of myself a little bit more.
L: Yeah. That's wonderful. If you could share some gems from your body journey and your journey with Kelly, what would be a few of them? The key learnings for you?
A: Mmmm. I think being present and loving are the biggest things. Like I could say, you know, advocate for yourself or like Google even more. But I find that even though there's a benefit to that intense curiosity, like there's nothing I've experienced that's more powerful than communion internally and externally. Like gather your people, you know. Kelly, she had like a, an what does that show from the 80s.. like the A Team. She had like an a team and like you know... there was Robin pulling her, her role in front. There was me and there was Candice and there was Jessica and Nicky and Jessica T and Brad obviously and like her mom and her dad and…
L: Friends and husband?
A: Yeah. And all these people like just in this very specific role that she had somehow -- And it probably wasn't conscious -- but like she had gathered people who would each offer her a completely different gift in her life and also in her dying.
L: That's so beautiful.
A: It was great.
L: And I do think that if…
A: It was terrible, it was terribly great.
L: Yeah! And I do think that's what great is what she created and let into her life. Who surrounded her and chose to be in her circle. And I think that's such wisdom for all of us because I do think so…. There's no one person who meets all of our needs and we each have gifts to offer each other and in conjunction with another person, we have a certain type of chemistry. So being able to say I want to create my own team of people in my life and my world.
A: Or even like interviewing your friends and being like, “Hey, could you be my like my x, y, or z person?”
L: Would you be part of my A Team?
A: Yeah, like could you be my infusion buddy or could you be the one... like you're really good at this aspect of life. Can I talk to you about this? Or like, “Hey, let's just get together,” and also like also the love inside, like finding yourself in and because of the fact that your body is fallible and is showing you your mortality and is maybe hurting and maybe you're suffering. Like those are historically very… I mean some very famous people suffered really greatly and like I'm referring to religious figures like finding... not finding the gift in the suffering because I think that that's like cruel when someone's really suffering to be like “Appreciate it right now.” Because you hear so many people say like, “I'm so grateful for this disease or this thing that opened this way of being to me,” but maybe just like, I don't know. Loving where you are at that very moment, beyond the desire to control it or search for a solution. Beyond the fear that a doctor will miss a thing or that somebody's wrong. Like to just sit with yourself and sit with your broken body and just not leave. You not leaving you. Or you gathering your people. Those feel like some some gifts. Because me not leaving me has been the gift of mine. I'm still not particularly good at gathering my people, but watching the way that she did it, I feel very inspired by that.
L: Well count me in as one of your people. We can discuss my role later.
A: You too! You too.
L: We’ll outline job descriptions. Okay. [laughter] I just really appreciate you and have really had a lot of times and places where my heart has been touched. Just seeing your journey and…
A: Thank you. You know, you and I, you too. You're a poet too.
L: Thank you. We've never sat together. This is our first time doing this, so it's kinda neat to be getting to know each other, you know, in front of the world. [laughter] What does it mean to you to have a fulfilling life and has that definition changed as a result of your health journey? I'll even include, as a result of your experience with Kelly and her health journey.
A: Yes, it's changed dramatically. I think the timeline has been like in my twenties it was like “Fame or bust.” You know, like that's the only thing that will be the mark of my value and as I've gotten older, as I had Orion, as I've put some dreams to bed and woken up other ones, it's been a realization that the most rewarding things that have ever happened have been small. It's been like a moment in New York City where the sun was coming through the window just so... it feels like the things that you would flash to on your deathbed. Like the lightning bugs when I was a little kid, you know, outside at 8:00. Catching them… and those feel like the things that make up the sum total of my life. Also being able to take those moments and make something physical that represents them. Either like being on a vacation and taking a leaf and rolling it through the rolling mill and like imparting the magic of that trip that I took to somebody who will purchase that necklace is like hugely fulfilling. So I think just capturing tiny beauty and sending it on it's way, like not being, not being too greedy about it.
L: So beautiful.
A: That feels like fulfilling life. And Kelly, like she would have said the same thing, like nature was her church, you know, and yeah…
L: I feel like I want to do a um… Well, first of all I want to say you are so a poet. In case there is any question. I think the listeners can back me up on this. [laughter] You just have a way of being able to describe such beauty and you tell it with wonder, which to me is aliveness. Do you have any funny moments from your health journey that you could share?
A: Oh God, I'm so serious.
L: I know. That's why I asked this question and you can take your time. Take your time. Actually do take a little moment to think about it. Or if you want you can share something from your time with Kelly just. Maybe in the moment, it wasn't necessarily funny, but looking back it feels funny or maybe it's a thought process that was funny.
A: A million things that were funny and for some reason right now they're not like, they're not coming to me. Yeah. I've been real morose about shit, like, and actually I went to a naturopath who diagnosed me with adrenal fatigue and she was like, “So one of the things I want you to do is have fun.” And I was like, “What is this fun you speak of?”
L: Fun? How do you spell that?
A: Yeah I was seriously flummoxed, like, “What’s fun? How do I have fun?” Um, yeah, so that question is a wash because like I'm, I'm like a funeral dirge of a person.
L: Oh, I think I just have to tell you I'm really big on validating people and I want to acknowledge… I want to acknowledge that you see that in yourself. The ways that it's hard to have fun. And I would like to suggest there's a little bit more based on social media.
L: That you do call joy and fun and cheer into your life.
A: Oh, for sure. Yeah. Oh totally. So maybe like in this, in this vein, like I am just now coming out of that crazy tail spin that lasted years of like, “It's worse, it's worse, that's worse, that's worse, that's worse.” And then like waking up and like for the first time putting on the radio and dancing in the kitchen, like unabashedly just dancing my Elaine.
L: Yes, like Elaine from Seinfeld!
A: … Just dancing terribly and like happily. So I feel like in a couple of years I'll like have a million things to say about that. But for now I'm just like, “Oh, I'm coming back to myself again.”
L: Alright, well let's just plan on next time you come to you on the show, which hopefully will happen again... I'll ask you the question again and you can answer it. Or if you want you can write into me and I can share it.
A: Aww that’s sweet.
L: What do you have now that you might not have had without this health condition?
A: I have a deep loving, trusting relationship with something greater than myself, but I still haven't quite put my finger on it. Sometimes it's Jesus. Sometimes it's like the infinite mystery that I couldn't even call Jesus because it's so big. Like that sounds sacrilegious to some people I'm sure, but like it changes all the time but I would not… It's like, it pushed me into it. I always had and gave lip service to my relationship with divinity, but it was always like a rewards-based relationship. Like “I do this and you give me this.” It was transactional, which is like the, it's not love, right? And this was like, I, you know, at the very, very end of all the things was death or dying. And so I would, um, I would watch and listen to--hundreds at this point, maybe even thousands--of near death experience literature and videos on youtube and would kind of glean this collective pattern that I saw throughout all these things about like that we're here very specifically. That there is a really distinct purpose to every person's life. Whether it's enormous are small, like we didn't put on this insanity. If this is heavy and cumbersome… I believe in my worldview and my cosmic worldview that we are as light as a feather and very, very free without these bodies. And so we came and we're doing this thing and maybe when our body is shown to be frail, um, maybe it's a sign that there's more bedrock activity that can happen. Like instead of trying to fix or solve, which is important too, to try to do those things… But to maybe find if it's possible, on some level to actually trust the process of being alive and being sick and waking up. [laughter]
A: Could they all be tied? Could they be…
L: What you're saying reminds me of one of my favorite quotes, which is Kelly's quote, which is, I might get this wrong, you can let me know. “You are a brave soul indeed to bind up all that star dust and walk this earthly path.”
A: So. Well done. Yes. It's so brave.
L: It is so brave.
A: And I went to a place called the International Academy of Consciousness when I was in my twenties. This very non-mystical approach to studying human consciousness. It was amazing. And I remember the teacher Louis Minero is like this…. He's unbelievable. Oh my gosh. He referred to Earth as like a hospital of sorts that we're figuring things out. Everybody's figuring something out and humanity as a mass consciousness is like really young. We're working and we're trying to evolve. Everything's evolution. And so here we are and sometimes when things are really weird or crazy I'm like “Okay, this is a planet full of people evolving.” If I didn't have this difficulty… were we talking about that? We were talking, it could have been you, it could have been her. We're talking about the desire to have things be easy, like how we kind of want it to be easier than this to be here. And yet it's not. And I was like “Well would we actually truly evolve if everything was easy, if we weren't faced with problems or like quests or like a hero's journey?” Which I believe part of being ill. Would we grow or would we just be like … fat and happy? So I mean that's…
L: That's a big question and I think that, I mean I'll weigh in. I think that's part of the bittersweet, everything-ness of life is that it isn't one thing. It's so gorgeous. Like you said earlier, there's so much love, it sometimes hurts. And there is so much adversity that somehow we find love in it. You know, it's like there's, I don't even know what this life would be like if we didn't have challenges
A: And yet we keep, there's this part of us… we keep saying “I shouldn't have these challenges.”
L: Yes. And you know, I think that part is such an innocent part, you know. It's like that childlike desire to just be held and have all of our needs taken care of. Like when we were in the womb when you didn't even have to breathe.
A: Right. So we came from that. We came from that into this ever-expanding ring of challenges. So like of course it makes sense, but that, that's like the complaining part that's like “I don't want to have to do this thing.”
L: Exactly. That's the part of us that needs love the most. And then your wise self or your highest self or your deepest self, whatever you want to call it, has this beautiful way of like, I can almost see you smiling with loving eyes. “I'm looking at that part of you and saying it's okay. I'm here. I got you. We'll get through this.” And what you called it... I'm not leaving me.
L: Yeah, it's beautiful. So finish the sentence: This is not what I ordered…
A: But I kind of like it. [laughter] This is not what I ordered, but it's growing on me. It's an acquired taste.
L: Yeah. I like that. I almost feel like it's brave to acknowledge that we're supposed to hate this.
L: And sometimes I think it's it, you know, I think all of us have those moments where we're like, “I do hate this and yet, somehow, we can find something else in it.” That's beautiful.
L: Thank you for joining me.
A: Thank you for having me. This was so cool.