Lisa Sniderman, aka Aoede, is an award-winning quirky folk-pop musician, playwright, author, and filmmaker from San Francisco. She’s been honored with more than 85 awards for songwriting, audiobooks, films, stage plays, and books since 2012 — all while living with rare autoimmune disorder dermatomyositis (or DM, as she calls it), a progressive muscle weakness disease. Her memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude chronicles her decade-plus journey living with DM while creating to heal. As Aoede, she creates and records unique, original full-length fantasy musicals on audiobooks that she adapts to musical theater stage plays. Her goal as an advocate is to encourage and inspire others — especially those experiencing transformations, from chronic illness and disability to unexpected life challenges. Hers is a joyful perspective on living well with chronic illness, and her latest venture is a free two-week virtual summit entitled Keep Shining: How to Thrive With Chronic Illness and Limited Energy, which will be hosted online from July 10th-24th. The summit will bring together a vibrant interactive community of 60 expert speakers; thriving artists who battle chronic illness, alternative practitioners, spiritual teachers and healers, creative therapists, thought leaders, medical professionals, and online support communities; who will share stories, resources, tools, practices, strategies, tips, and life lessons through conversational videos in order to help those of us struggling with chronic illness, caretakers, and loved ones to THRIVE.
Tune in as Lisa shares:
- that she was first diagnosed 12 years ago — 6 weeks before her wedding
- that chronic illness treatment is always focused on the physical, and rarely addresses mental health and other holistic concerns
- what dermatomyositis is — a progressive muscle disease that also attacks and weakens her immune system
- that in 2010, she had a DM flare that left in hospital for a month, and led to such severe muscle weakness that she had to learn the basics of motion all over again
- why her life is “firmly cast in Jello”
- what pacing looks like when you’re living with chronic illness
- what to expect at her free virtual summit this month
Lauren: Hey guys, thank you so much for joining us. I am here today with Lisa Sniderman, who's also known as Aoede. She's an award-winning San Francisco-based artist, playwright, author and filmmaker living with dermatomyositis. And she's got an upcoming free summit that's going to be happening, a two-week event of free resources and talks with different people in and around the chronic illness community. And she's gonna tell us all about that, too. So Lisa, thank you so much for joining us.
Lisa: Thank you for having me. It's great to be here.
Lauren: It is such an honor to give you an a platform to share your story. And there's lots to talk about. So let's dig right in. I would love for you to tell us how you first realized that you had something going on, and what steps you've taken to control your health since your diagnosis.
Lisa: Great question. There's a lot there, so I’ll try to explain some of this. The best way I can do it is say … picture yourself six weeks before you're about to get married and about to go on tour, and you inexplicably come up with a rash on your hands and have very red, painful nail beds. You go to the dermatologist, thinking they're going to give you some sort of a topical cream. And instead, he gives you this diagnosis, this unpronounceable diagnosis, and refers you to a rheumatologist. And you’re 35. So that was me in 2008. I was on go, go, go … didn’t even really know that that pace and that way of life was something that would have such an impact on on me in the future. As far as what initially started, as I noted, as a rash, eventually spread to my muscles — which became so weak that I had issues moving, and things like that. And so the steps I took to control my health initially were a lot of Western medicine, physical things. So, things that would help my body and mobility, things like drugs and infusions, and also things like diet and supplements. And then I also was trying a little bit of Eastern alternative medicine, so that I could avoid having to take immuno-suppressive drugs for the rest of my life. And then I supplemented with physical therapy and a little bit of pool rehab. But I want to just note at the onset, that almost everything was physical — it was all intended to help my body. And that's a big thing in my story, as you'll see — that focus on the physical is what a lot of us seem to go through, especially when we're in what I call the “the surviving phase”. So I tried different techniques and things like energy balancing, which helps perhaps minimize some of the triggers for inflammation — but they didn't halt or slow the progression of the muscle part of the disease. I was also on seven to 10 different immuno-suppressants over my treatment to try different things.
It's always kind of a rollercoaster, that’s what I say. So I've navigated, battled, and made peace with my illness.
Dermatomyositis is basically a progressive muscle weakness that also attacks and weakens my immune system. So if I'm not treated, it could result in me being bedridden, or worse. And in fact, in 2010, my biggest issue was that I had a flare of my DM, and it resulted in me being in the hospital for almost a month with complete muscle weakness. I couldn't move my muscles, and coming out of that I had to undergo rehab in order to learn how to sit, how to stand, how to walk, and eventually how to re-play my instruments and sing again. So it was a whole process of surviving.
Lauren: Not to mention that your career and your identity here is completely in question because your body stopped working.
Lisa: Exactly. And that was the other thing … there’s a lot of physical changes in that transformation. But there's also the mental transformation that happens. So, what's happening is, I'm questioning my purpose and my identity and my fate, what my contributions are, the value I have, my worth as a person, let alone as a disabled artist now. And so, like I say, all this was kind of my darkest days, when I went from complete independence to dependence. For many months, I required home care from bathers; physical occupational therapists would come to the house. My friends and family would have to shuttle me back and forth each month to infusions at the hospital. And I'm re-learning a slower baseline that involves wheelchairs and walkers and canes and ramps, and soft food and shakes, and shower benches. The reason I mention all of it is because I went from … and I realized this, more recently, that this is also part of my story … going from surviving to thriving. And so, if somebody says, “What's your story?”, I say, “Well, I'm Lisa Sniderman. I’m an award-winning artist, and I live with a rare chronic illness, and I've been creating obsessively for about 12 years to express and heal.” That's how I see myself. But the other part of my story is that I'm also a light in the darkness, in that I wanted to take my experience and be able to help others who are living with illness and facing similar challenges. I’ve added to my story now — that I also have gone from surviving to thriving. I say that because what happens when you're in this place of mental despair, or whatever it is, you have to do something. And so for me, I compulsively threw myself into my music, into writing, into playing, and eventually recording, connecting with fans, anything I could do, to kind of express. And then later I learned to avoid the darkness. Now, there's something really cool about fully launching yourself into creativity and nurturing that place. For me, it's my go-to place; it's the place where I know that time stops. If you've been in that creative space, the illness ‘goes away’ for a little while. It's not that it goes away, but you're not focused on it. You’re in the place of what they consider flow. I can see that I'm still an artist; all those things happen in my creative space. And there's something beautiful about that creative space. But that was one thing in a whole suite of things that have sort of helped me get from surviving to thriving. I discovered in 2016, when I was living with DM for more than eight years at that point … it hit me that I had never really processed my illness. Perhaps because I was hiding behind this.
Lauren: So there was an element of denial.
Lisa: There was an element of … I wanted to play in the creative space. That’s fun. And I don't have to necessarily think. I can disassociate. I was writing musicals, I was creating fantasy and things that weren't necessarily related to dealing with the day-to-day experience of my disease.
Except, this is ironic, and I have to share this … that even while dealing with writing the musical, I realized that my themes were light and dark, and that they mirrored my struggle.
Lauren: Of course! Wow.
Lisa: Of course! But I didn't know that. And I'm kind of happy that I didn't know it during the time — because it would have colored that experience for me a little differently. Instead, I was just feeling the gratitude and the empowerment. For me, going outside my comfort zone is actually really enjoyable. I'm doing it now with a project that I'm working on called The Grieving Project — and I'll explain that a little bit more. In addition to not processing my illness, I also forgot to grieve. And so I went from being diagnosed and dealing with denial. That was a little bit of grief, I guess … but dealing with that to managing things. I didn't really process in an emotional way what was happening.
Lauren: Did you have emotional/mental health support in place during that time?
Lisa: No! Realistically, I find that Western medicine is good at certain things … and we can get to this later … but Western medicine is great at acute care. If you're almost dying and you go in, you want your practitioner to be the one who's at the head, right? It's not necessarily the people who are going to say, “Wow, you need to be holistically thinking of your nutrition, and your mental health, and your relationships, and your intimacy.” They don't necessarily do that. It's more like, symptoms.
Lauren: It’s exactly what you were saying earlier on that the focus was just on the physical and not on any of the other planes on which you exist as a whole person.
Lisa: That is kind of what I'm feeling. So when I realized in 2016 that I hadn't done this, I had a yearning to be part of something bigger than myself, and to give back. I had a desire to write and share my own story, and to use my gifts to encourage and inspire others. And so I ended up writing my memoir that was called A Light in the Darkness: Transcending Chronic Illness Through the Power of Art and Attitude.
Lauren: We’ll have a link to that on the website for this episode.
Lisa: Oh, wonderful. And that is an inspirational story of the healing power of music and creativity, following your dreams, finding your purpose.
And it answers a central question, which is: What do you do when you're struggling with an illness and disability that doesn't go away?
So that pretty much takes me probably till about 2018.
Lauren: I'm curious to know, with DM, is it something that progresses over time? And do you have to do continual upkeep in terms of not just the physical but also the emotional impact that it has on your life?
Lisa: Yeah, so DM is an incurable disease.
It's an rare autoimmune disease, and they estimate something like six out of a million people in the United States get it.
And you need to treat it. You need to treat it for life. Remission is possible for certain people, but I've been dealing with it for 12 years. So I'm just going to have to deal with it. And here's an example … when I had my flare in 2018, I was managing the best I could on my current treatments, and then eventually opted to do IVIg, which are the gamma globulin infusions. It's pretty intense in that you're there five days in the month because it's a slow infusion. And it's intended to help regain your strength and stamina and energy, because it's antibodies. So it's a positive thing in that thousands of people give the plasma, and then they source this gamma globulin, which is all these great antibodies, and then they put that inside me. Now, the idea is that it gives me a fighting chance by giving all new antibodies — because my disease is attacking the muscle cells. So by giving me a whole bunch of new antibodies, the hope is it won't attack or it will slow the attack. So the reason I'm mentioning it is, I made the hard decision in March to stop the treatments because of COVID. And that's a big thing right now. So I am managing my own health without some of the medical interventions. And I'm relying more on things like diet. I have been seeing a functional nutritionist and changed a lot of … my relationship with sugar, for example. I haven't had any sugar, refined sugar, for almost 10 years. So that part wasn't new. But I didn't realize that all the fruit that I was eating, and all the carbs that I was eating, were actually also inflammatory things. So the combination of supplements and nutrition has been helping me manage while I'm not on these interventions. I say all this by way of saying: It's a management for life, and you have to do everything you can to keep things quiescent. So there are times in my journey where I feel like I'm on the up of the rollercoaster. And there's other times when I'm really low, and need things like these IVIg treatments.
Lauren: So it's gonna be a constant rebalancing act, it sounds like. And in a sense, that's actually really great because it forces you to be in a position to be fully aware of yourself, your body, your existence on another level of awareness, right? That you're forced into this position of, okay, I really have to pay attention and take care. So often what happens when we get a diagnosis like this, these life-changing diagnoses, is that we realize that we weren't taking care of ourselves the way that we could. And these diagnoses can make that change.
Lisa: Absolutely. The extreme one for me was going from go, go, go, go … to nothing. Literally, my body was, like, ‘If you are not going to stop, I will force you.' And it allowed me that flare where it was like, boom. That lowest point was also obviously the point to grow the most from — because that was like, wow, what really matters. Kind of like now where we're in this place of the pandemic, and everybody is in whole new, not only headspace, but everything around us is different. Well, we have opportunity. That's how I see it. We have opportunities here. What kind of world do we want to live in and create for ourselves?
Lauren: Yeah. And I think it's also that idea that, when you hit rock bottom, the only place you have to go is up, right? You can't go any further down. So the only place to go is up — to grow, as you say. I'm wondering also during this journey of self-discovery that you went through, once you were diagnosed — and you were diagnosed very early on, which is an unusual thing for us to hear on the show here — did you discover that you needed a personal advocate at any point in this journey back to yourself? Because it sounds like you had been newly married, or just about to be married when you were diagnosed. Did your husband play a role in recovery for you? How did that look, that advocacy journey, in terms of having an advocate? Or did you become your own advocate throughout this?
Lisa: I’ve always been my own personal advocate, but I definitely rely on and appreciate, and I have so much gratitude for my support system around me. In my case, I have a beautiful pillar of a partner in my spouse, somebody who's been with me through all of it. It's a beautiful thing in that he's always been either at the appointments with me or wanting to learn … like we went to a myositis conference one year after I was out of the hospital; they asked me to perform and tell my story. And one year later, I was still in the wheelchair, I still had really low strength, and to actually do a 30- to 40-minute presentation took everything out. And he was right there with me in Las Vegas at the time. And so were my parents; they showed up at the conference.
Having that kind of support, and in the hospital having friends and people and family around … I always say I don't go this alone.
That’s one of my recommendations to people, always find a support system — whether it's going to be your friends, your family. And if you don't have that close, then a therapist or online support. I mean, we don't do this alone.
Lauren: Yeah, don't operate in a vacuum. Absolutely. So can you tell us what a typical day is looking like for you at the moment? I know, as you mentioned, you made the decision to stop some of the infusions you were on. And so you've been more focused on holistic options during this pandemic. I'm wondering how you're balancing the demands that your body puts on you while maintaining a career. And keeping an eye out for symptoms. How are you making it all work?
Lisa: So my biggest thing … number one … the hardest part of living with DM for me are acknowledging and accepting that I have limitations. It's like coming to terms that I'm not in control of my body anymore. And I can't just do what I set my mind to. And that's important, to actually be okay with that. My new normal is always having to choose. For people familiar with the Spoon Theory — a lot of us are either Spoonies or understand — it relates to the reduced mental and physical energy available to me each day. And it represents what I can do and live with. So as an example, can I shower, or do my stretching? Can I play songs on my uke, or fold laundry? Can I conduct this video interview, or prep dinner? It's always having to choose. And I just want to acknowledge that, because that's a big thing for a lot of us — that some people who don't live with chronic illness do it all. My husband, especially when the pandemic was not present, would go out to his day of work. He'd have a full day of work. He'd go grocery shopping afterward, he’d cook dinner, he’d clean up.
Lauren: Which is already so much to do! I don't know how I did it before, let alone now, right?
Lisa: And in my case, energy is so big. So I have so much awe and respect and appreciation for people who have the energy. I’m, like, okay, if I have it, I kind of spend it in spurts. But the answer to the $100,000 question you asked … for me is naps, naps, naps. Just nap, I have to. I literally just took a nap right before our call.
Lauren: I took one earlier this morning. I’m so with you!
Lisa: And most of us do this. We can't function. Now, most of my naps are not necessarily what I would call restorative; rest is not restorative. But at least it gives me a little more, I guess, than before I went to sleep. I don't know.
My friends, and Dave and I … we kind of joke that my life is firmly cast in Jell-o.
That's what I say.
Lauren: I love that!
Lisa: And the reason I say it like that is, my heart may be into something, but it's really hard to make commitments. So I say Jell-o. If somebody says, “Can you …?”, and again, this is before pandemic, so it's not like a bunch of people are asking me to do things right now. But when people would do that, it would be, “Hey, we really want to be there for you. But we'll have to see what the day brings.” That's kind of what happens. I don't know what my body will do. And I also think that people who don't have chronic illness can really understand the isolation or what it feels like to not be out in the world every day, and that right now with everybody sheltering in place, it's changing. And I think that there's an opportunity here for a couple things … one, for people with chronic illnesses to advocate and help other people ease in to this. A lot of us have been sheltering in place for a long time. It's okay, you know what I mean? I don't have mental anguish over this.
Lauren: Because you’ve had many years to work through that.
Lisa: It’s familiar, yes. And then, if you ask me what a typical day is like, realistically, because I'm homebound and I'm here, most of my time is spent … because I create … on the computer or doing things … like, right now, I'm doing a recording project. What does that look like? Well, I'm not going to be in the studio. So I'm doing recordings from home. I'm writing. I'm rewriting. I'm doing things like that. And to balance it, I have to take my naps. Now, I'll give you a quick story … in 2018, I interviewed 45 different artists, creating to heal, to share their stories. And I did that within a three-month period. And on top of it, I launched a book and then produced a live event. Now, all of that on a person who's healthy, is a lot. And I was in the up of the rollercoaster, so excited by this creativity, so nurtured, that I didn't do what I needed to do, which is attend to self-care and balance. When that happened, my body, again, pleaded with me to slow and then stop, and I didn't. And that's what I think was responsible for the flare that I had. So it's a real thing to me to say, I need to listen. And so this time around, when we talk about doing a summit and all of that … it’s not that creativity goes away. It's not that I stop. It’s, I say, how do I do this and focus on the self-care? Well, for me, it was to take a year to create the summit not three months. I do my interviews over seven to eight months, and I do a max per month of interviews I'm going to do; I did 10 a month, and I'm going to do a max of two a day. And that's it, etc., etc. And I was like, I'm not going to have two projects happen at the same time. Well, COVID happened, and now I have two projects at the same time. Well, for the most part, my choice is … I need to have time to just rest.
Lauren: Yeah, absolutely. You mentioned also, earlier on, the use of mobility aids, and I'm wondering whether they've had an impact on your independence as well in this. Because when you were fully wheelchair-bound, I imagine that was something where you probably had to have a little more help. But maybe getting out of the chair, using canes, using supports, that's maybe given you back some of your independence as well, I imagine?
Lisa: Yeah. For the most part at home, I can go without aids, and when I'm out, I use my cane and my walker. For things, like, at the park, It's for fatigue; I have to sit.
Lauren: I'm so glad you mentioned that, because this is something that comes up with the use of mobility aids … I think often people think that if someone's using them, it's because their muscles are not working or their bones are not working. But oftentimes, for those of us who are Spoonies, we know, okay, I've got this limited amount of energy today, and if I'm going to be out for the next hour, I need to have a wheelchair. It’s not that you need it, but it’s that you don't have enough energy to expend.
Lisa: Exactly! It gives you more to work with, but you can also, perhaps, be with the people you love or something. I used to feel like, oh, this is a burden, when I was in the wheelchair. Or, it's a burden on Dave, or something. And he would look at it as, oh, she can join us, or join me . So it's almost like … wow, you have to also look at this as just a tool. That's it. You don't have to be all weird about it; you can just say it's a tool.
And if it enables me to get more out of life and to be with the people I love, great.
Lauren: And what about those relationships, as well, with the people who are around you? How has the diagnosis impacted what those relationships look like, and how they function?
Lauren: Are they deeper now?
Lisa: Wow. Well, the people who are close to us in life, I mean … we've been so fortunate. Because I feel like I'm not justifying my illness, for the most part. If anything, it’s, like, “Wow, you look really good.” All of us have heard that before. And somehow we're challenged to say something like, “Yeah, but we're still sick.” That's not really what we're saying. And we don't say it out loud. A lot of times we think that in our head … somebody tells you you look well because they want you to be well.
Lauren: Are they gaslighting me?
Lisa: Well, what they don't always realize … let me put it this way … they are always well-intentioned, What they don't realize is that when they leave, I'm gonna have to go to sleep. It's not like I have this this thing that's like, oh, I'm better, I'm better. You're always going to deal with the illness. And so they're very well-intentioned, that's one thing. But on the other hand, I have an amazing, beautiful support system. And when we're not in a pandemic, people would come over and here's an example … they know what kind of energy I have. They don't even ask sometimes; they just pick up the dishes if we had dinner and they put up them in the other room so that Dave can get a break, or I don't have to do that, because that means also more quality time that we can spend together. Rather than spending my energy on doing something like that. Or they bring food. During infusions, people know how wiped out that I get during that week. So at the end of the week, we had a friend who would come over, and she would just bring food. Something like that was really nice, that you just have a lovely support system.
Lauren: And it sounds like they've reinforced your sense of community as well, which is something that has been coming up a lot with the pandemic, because people are feeling like they're suddenly without community. They’re isolated.
Lisa: It is so hard, right? I mean, we've got our Zoom, and I'm definitely appreciative of having Dave here; Dave and I are together. There’s people who are living alone right now, and their only sources are … either if they can go out and grocery shop or do something like that, or these online means. And wow, we really took our in-person times together for granted, I feel like. Because all of a sudden, things changed so quickly, and it was gone.
Lauren: Yeah, absolutely. You mentioned also when we were just talking about these relationships, the idea of having to justify your illness to other people. I'm wondering whether you found yourself in situations where, aside from people maybe not understanding, were there any incidents or confrontations that you have had, in which someone has just denied the existence of your illness entirely when you've had to explain it to them?
Lisa: I am really fortunate in that way. Now, I know we talk invisible illnesses, so for most of us, people don't understand what's going on.
If anything, I would say it's just a lack of understanding rather than confrontation.
Meaning, people are curious. Some people have actually come up to me if I have a cane, which I will always have when I'm out, and ask me, “What happened?” Did I have an accident? What happened to my leg?
Lauren: Strangers? Like, it’s none of your business!
Lisa: That's my inclination, except I’m too kind and I'm compassionate. So I usually will just say … because somebody is coming out of curiosity, you know …
Lauren: Not out of malice.
Lisa: Right, I'll usually just say I have an autoimmune disease. Or, I won't answer. I don't know. It just depends on my mood.
Lauren: Fair enough.
Lisa: I have had a mobility aid when I'm out. And I think if I didn't, I probably would be more exposed.
Lauren: Yeah, I know. Absolutely. Well, that's the kind of thing that, if you don't have a visible signifier, it's harder for them to understand. We understand, generally speaking, the language of disability from the point of view of someone using a wheelchair or a cane or something like that. But when you don't have the mobility aid, it makes all the difference. But if you're at home, and friends come over, unless they know, I suppose, they don’t.
Lisa: Oh, yeah, completely. I had a recording project one year where we were doing an audio book and I hired voiceover actors, and we all rehearsed at my house. Without anybody knowing stuff about what I was dealing with, people wondered … later, I had an interview set up and one of the women said, "I didn't really know anything was going on.” But I noticed that she sort of hesitated to get up from the couch because she was having a little bit of an issue getting up, or something. So when people don't know what's going on, everybody's gonna act differently.
Some people might be curious, some people might be quiet about it. You just never know.
Lauren: Yeah, it is interesting because it does reveal other people's perceptions.
Lisa: The medical system is a little bit different, right?
Lauren: That’s what I wanted to ask you about actually. Because I want to know, as a woman going into the medical system with a complex and rare disease … while you were diagnosed early on, is that something that perhaps, maybe, you've experienced privilege or experienced prejudice in the system because of presenting as female? Or do you think if you'd been a white man, you would have been taken more seriously by certain doctors? How has that looked for you?
Lisa: Well, I have been fortunate in that I've had one chronic care primary physician in my rheumatologist who saw me from 2008 to 2017, when she retired. Now, that said, she was caring, she was considerate. She was a team, and she cared. If I had a suggestion or thought, or we were trying to work through that, she would be open. What she wasn't open to was any other approaches. So, supplements or Eastern medicine. As an example, if I was going to be taking something like a supplement, she couldn't ever say, ‘This is going to have this effect because it's combined with prednisone, or it's combined with methotrexate.’ So it was hard to navigate when I was doing some of the Eastern medicine and Western; that's where I found the most difficulty. And then also in the system of nutrition. Western medicine just really does not get nutrition.
Lauren: It’s pretty garbage with regard to nutrition, yes. It’s unfortunate.
Lisa: When I got out of the hospital, as an example, I had to go see a nutritionist. What was that for? Caloric intake! Things like making sure I got the food groups and calories. Oh, yes, they realized that I wasn't eating gluten, but that's a preference. They don't really make the connections. So, on that note, I would say Western medicine is so focused on managing and treating symptoms, and not on the whole person. Whereas I've had much more success, as I'm finding, in the functional medicine and in alternative, for that aspect. Which makes a lot of sense, right? I also can say for acute care … I have Kaiser; it's a system that I've had for 25 years. I love having Kaiser, to be honest. And I love that I had a doctor that saw me for so long, that could sort of manage care. Because so many things that crop up during DM might be DM — or they might be just a cold.
And every time something crops up, you have to ask yourself: Is this a DM thing? Or is this just a cold?
Lauren: This is the classic conundrum of a Spoonie.
Lisa: We all deal with this! So I was fortunate in my care to have a rheumatologist who’s, like, “Okay, you have a sore throat. I'm giving you this medicine … blah blah blah … to deal with it.” And not always kick me to my general practitioner, or whatever. I really think that was very helpful. Now that's not necessarily the case. She retired, and actually I don't even have a rheumatologist right now; I have an interim one because my next rheumatologist left. So I am sort of in limbo. And then the other thing I'll say real quickly is that I tried to get an advocate for at-home infusions, because I'm dealing with IVIg. Well, I tried through Kaiser, and I needed to go out of network because Kaiser does not offer the type of infusions that I need for at-home care. I needed to go out of network and they wouldn't let me. So I sent in appeal, or whatever. And then that was denied. And then I went through an independent medical review, that was also denied.
Lauren: Meanwhile, you’re sick the whole time, you're waiting the whole time.
Lisa: Yes. I get a little bit of this. If you look at the reasoning, I'm not on death's door; I didn't just have an organ transplant that says I can't get to an infusion center. And the infusion center is open and not contaminated with COVID, according to them. My own feeling, though, is, it's too much of a risk. It's five days, and I really don't feel comfortable. I will not get a good treatment, number one, because I will not be in a space that I will ever accept that without feeling like I could get this horrible disease.
Lauren: Which you’re also at higher risk for.
Lisa: Right. I'm severely immune-compromised. So, it's a hard decision. I feel like the health system works for patients when you have one doctor, when you have somebody who cares about you, when they listen to your concerns, and all that kind of stuff. But no matter what, even when you deal with that, you can tell that the insurance system doesn't necessarily work for patients.
Lauren: Yes, absolutely. I think you're right. I really like that you bring that up, because it is about the insurance system being the thing that gets in the way of us having more comprehensive care, from what you're describing. Absolutely. Let's talk about your advocacy work. Let's pivot into that, because I mentioned at the top of this interview that you're going to be launching a two-week summit. This is from July 10 to 24th. And you've conducted interviews with many people — from practitioners all the way to people like us, who are Spoonies — about, as you said earlier on, thriving with chronic illness. So can you tell us a bit about what that summit’s going to look like?
Lisa: Yes, and I'll just give you the quick reasoning behind it, too.
So for me, basically even after 12 years of living with my illness, is: What remains? What challenges do I still face?
I still have issues — creating, connecting, and forging and finding community — while homebound and with limited energy. So, I discovered not only do I want to find innovative ways for me to continue to do these things, and creating a summit helps me do that. But also to be a light to others, and to inspire others who struggle with chronic illness, as well as loved ones and caretakers … to go from, like I did, surviving to thriving. So that's really the genesis and the reason behind the summit … hey, I feel like I have a niche — creativity and healing. And I could share stories and help talk about what that is; that is sort of my area. But how would I then be able to share all this other knowledge? Living with chronic illness doesn't come with a set of instructions, is what I always say. So how can we make shifts in our own health and life? And that's why I said, well, I'm gonna ask all these experts. So I asked, like you said, these 60 experts, about what's worked for them, and what are their recommendations. The experts range from alternative practitioners; creative therapists like art, music and drama; spiritual teachers and healers; artists who battle chronic illness; thought leaders; online support networks. And medical and mental health professionals. So I'm trying to get this whole range of people, and I wanted to address topics that really reflect what we face — things like nutrition and spirituality and mindfulness and yoga and meditation, and mental health, creative therapies, holistic medicine, even sexual health. Things that don't always come up when we're at the doctor's office. Because they give you the treatment and the drugs, and maybe some physical therapy, but they don't always focus … I never once was prescribed or even recommended to go to a therapist. Not once.
Lauren: And this is, again, such a common story, isn't it. That is such a huge part of our health journey, the mental health aspect of it. And yet, because of the way that the American healthcare system is strapped by insurance, often mental health is not thought of as part of the picture. When it's a huge part of the picture, especially if you're living with chronic illness.
Lisa: Yeah, it's so interesting, and maybe it's that I'm not showing symptoms or signs of clinical depression, because I'm very upbeat. Or that I didn't advocate for myself; I never said I'd like to. So having a better understanding of what some of these strategies are. These 60-plus speakers are sharing tools and strategies, resources, practices, tips, guidance — all based on their own experiences. And I'm making this a two-week summit. So it's 14 days online, it's all for free and it will always be free. It's not something like some of the summit models where they’re, like, “Watch as much as you can in two days — and then pay $99 for the package.” Now, I'm not dissing the model; some people that works for, but that's not my model. I wanted to make this fully freely accessible for all. It's not only the videos that I recorded, but also there will be live speaker panels. So now I have the opportunity for participants to get on a call with all the speakers who are participating, say 15 to 20 on each week, and be able to do Q&A and a moderated panel. There's also opportunities for live Facebook special talks. So I'm going to have some speakers not related to these 60, to, in addition, come in and talk about things like a chronic illness tracker app, or a tracker book, so it will engage the group and give opportunities for live community. There's also a live drama therapy workshop so people can get their hand at what this is like, and get their creative juices flowing. Just different things during the summit that really address issues, like how to keep to an exercise program. What mindfulness and meditation are, and how to start a practice. Why practices such as journaling and gratitude are so helpful. How do you balance between work and self-care and illness when you have low energy? Why is it important to have a spiritual practice and how to cultivate one. The things I'm rattling off are things that I gained and garnered from talking to these different people.
There's such a wealth of information that all of these people have to share, and I just really wanted to freely help other people thrive.
Lauren: And is this content … as you mentioned, you're providing it free to everyone. Is it also content that's going to be available after these dates in July, if people still want to check in if they're not able to attend some of these live sessions?
Lisa: If they register, then absolutely. What's going to happen is, it's a paid site where I'm hosting my summit. HealthMeans actually offered to host all of my videos. After the summit, I'm going to have that be the location, the storehouse, so that anybody who wants to can continue to just watch all the videos. They’re called evergreen, meaning it won't come down. But they won't be on the same exact site as the summit. So what I would just say register; that way, you'll get the information. And if you can't watch 60, I get it. There's a lot of different ones.
Lauren: Well, there might be certain people that you're waiting to tune in for as well. Where would everyone be able to register? Can you give us a web address?
Lisa: Absolutely. So number one, before I do, I'll just say this is July 10 through the 24th. And July 10 is actually considered Chronic Disease Awareness Day. And that's because seven out of every 10 people live with chronic disease in the United States. So if you go 7/10, you get July 10. They decided to make that Chronic Disease Awareness Day. So that's why I'm launching on that day. To find the registration, you will probably also have a link, I'm assuming …
Lauren: Yes. I'm going to have that on the website for this episode as well.
Lisa: Wonderful. The reason I'm saying it is, there a dashes between each word … so it's how-to-thrive-with-chronic-illness.heysummit.com. But there are dashes between each of those. So I just want you to have the actual link. And I'll also give you the link for the Facebook group, because, as I mentioned before, during and after the summit, there's a lot of connecting in the group.
Lauren: Yeah, fantastic. And we'll have that on the website for this episode as well. So we're kind of slidin’ into the end stages of this interview, and I like to wrap up with a couple of Top Three Lists. I wondered if you could start by giving us your top three tips for someone who … maybe already is a Spoonie, maybe they’re waiting on a diagnosis and they're in this sort of gray area. What would you recommend to someone who's about to be in this chronic illness world with you and I? Or living with invisible illness? What would you recommend as your Top Three Tips?
Lisa: My Top Three … So the first one that is always my-go to is find a trusted disease-related agency or organization, and support group and network. I kind of lump them together. Because for me, for example, living with myositis, I had to go find The Myositis Association. It's somebody who I trust. I can get information and data about disease and treatments, and then I can find support, knowing that hey, there's a keep-in-touch group that’s actually in my area. Or there’s a Facebook group online where I can ask questions from people who've been there. You can also check with that organization to see if you can find local chapters. For example, keep-in-touch groups. That's number one. Number two, for me, what I was alluding to, is to grieve. During the summit and all of my 60 people, nobody offered that as a strategy. It was really interesting. And I'm not saying that people don't do it. I think people just don't think.
Lauren: They don't realize they need to.
Lisa: They don't realize.
Lauren: Or it happens voluntarily.
Lisa: Or it happens, but for illness, We often think, let's grieve a loss of a loved one. But even while we're going through the pandemic, we're grieving; a lot of us are grieving, some people for their lost work, etc. So grieve.
I think that's the big thing, that it's a big transformation to get a new diagnosis or live with illness, and it's healthy and understandable to experience a wave of emotions.
Be kind, be kind to yourself and let yourself feel what you need to feel. The difference for me is, I just don't allow myself to dwell there.
Lauren: Well, I think that's a huge point, though. I think that's really important. The idea that you give yourself maybe a controlled period of time to actually experience the grief, and then you say, okay, I've gone through that now, time to move forward. You don't sit in victimhood or sadness over it.
Lisa: Right. I always say, I am not my disease. I have my disease, but I'm not my disease. So then the third one for me is, read my book. And I say that because I feel like it gives assistance and encouragement and hope. And from people who've shared with me the impact, even people without illness, have said to me, after reading this … I am inspired to start this project or to do this or to do that. It's not a cookbook. It's just an inspirational story that reminds you that even if you live with illness, your dreams don't have to die. There's ways to find to keep your dreams alive. They may change. But you can still live with passion and joy while you have an illness.
Lauren: Yeah, I think that's so beautifully said. Now my last Top Three list, and I think you'll enjoy this one because you're someone who seems to really live in a very joyful, creative space … I want to know what your Top Three things are in life that give you unbridled joy. So, despite the fact that you've obviously had to make adjustments in your lifestyle, in the way you eat, in the way you move, and the way you move through the world in general. I'm wondering whether there are activities that you're completely unwilling to compromise on. These can be guilty pleasures, they can be secret indulgences, they can be comfort activities when you have a flare-up. But they can also just be things that feed you, that make you who you are. What are your top three joyful activities?
Lisa: Well, there's a joyful place. It's not necessarily activity … I guess it's an activity … spending time, number one for me is family. And that means a combination of Dave and my wire fox terrier.
My wire fox terrier is Alice, and she actually has been to every infusion with me, five days in a row.
Lauren: She’s a service dog!
Lisa: She is! And she sits there and keeps me so calm during infusions. She's huge. And I feel like you know, Dave is my best friend, along with my caretaker. First and foremost, if I'm not doing something else, I'm spending time with them. And that's my joy place. Second, as you noted, my creativity place. So it's creating songs or stories or albums or musicals or films. It's anything that sparks that muse inside me to explore and play. That's the answer. And then I guess my guilty pleasure, whatever, that kind of a thing, a comfort activity … is puzzles. So during COVID and all that, Dave and I were doing a 1000-piece; we're on a 2000-piece puzzle now that's just sitting there because both of us have been so swamped with things this last couple of weeks, and it's sitting on our dining room table taking up the whole thing! So puzzles, and then for me, variety puzzle books that I think harken back to maybe the kid inside me that used to find matching games. I actually really unwind with that kind of stuff. So those are my comfort things, yeah.
Lauren: I love that. Well, Lisa, it's been such an pleasure having you on the show today. And one last time, can you tell listeners where to find your work? I know we've talked about the link for the summit, but please tell everyone where they can find you. And they'll also be able to find additional links there.
Lisa: Absolutely, so my book is ALightInTheDarkness.info. It's also on Amazon and places like that. And then AoedeMuse.com is kind of my overarching artist website, and so I can give you links for that as well. And then Facebook and Twitter are my go-tos for social networks. On Facebook, I am at Aoede Muse Music, and then also on Twitter, I’m @AoedeMuse.
Lauren: Wonderful. Well, it's just been such a pleasure talking to you today, Lisa, You are, again, such a joyful and ebullient personality, to have on and it's such a wonderful reminder to those of us who are in this Spoonie space that there's joy on the other side. When you go through that grieving process, when you've processed everything you're experiencing and feeling, there is joy still to be had. You're such a great living example of that, and we look forward to tuning in to the summit as well, from July 10 to 24th. Thank you so much for telling us all about it, and for all the work you do for the community.
Lisa: Thank you so much for having me here! It was a joy to be here.