#MEAction sat down for an interview to catch up with songwriter and ME activist Kaeley Pruitt-Hamm, who in 2017 inspired MEAction to launch a virtual art and music concert called BedFest to showcase the artistic talent of the ME community, and also to explore the experience of having ME through poetry, art and music.
Kaeley has just released a full-length album called “The Canary Collective: Vol 1” with her “people power indie folk” project, now called “KPH & The Canary Collective,” and it is available to stream or download for whatever price you are able to pay!
The album interweaves spoken word quotes with music as a sort of “musical tour” through her experience with ME, and some of the quotes include snippets from Jen Brea’s powerful TED Talk.
Her intention in releasing the album is to “help encourage hope, dialogue, empathy, and action to heal our ecosystems in our bodies and on Earth.”
#MEAction Editor, Adriane Tillman, sat down for a video interview with Kaeley (transcript below) back in October 2019 when she was in the middle of her “Canary Sunrise House Show Tour,” having released the album exclusively to people who support her with monthly donations on Patreon.
She had just released the first single from the album, “Dam Dam” and its music video highlighting disabled young people with ME dancing in the desert together. They discussed everything from the impact of the “BelieveME” music video, Kaeley’s journey with other “canaries” from Seattle into the desert exploring mold avoidance, and her vision for the ME movement fostering unity across differing diagnoses and treatments.
Kaeley Pruitt-Hamm interview with #MEAction Editor, Adriane Tillman
Watch the Concert: The concert series will be live streamed for anyone who is unable to make the concerts in person.
Learn more about where to join the livestream or listen to “The Canary Collective: Vol 1” by going to KPH & The Canary Collective’s Patreon, Facebook or Instagram. Stream her album at: https://kphmusic.bandcamp.com/album/the-canary-collective-vol-1
Kaeley received a grant to record the album and organize a live concert series. The grant was from 4Cluture, which seeks to fund artists who provide cultural services that empower and amplify “underrepresented voices” in King County (Seattle area) and beyond.
Read the Transcribed Interview
Transcribed by R.A. Cox
Adriane Tillman: Hi everyone! We’re here today chatting with musician Kaeley Pruitt-Hamm about the release of her new music video called “Dam Dam.” MEAction met Kaeley more than two years ago when she released her album Hi From Pillows which she had recorded after contracting Lyme Disease, which then triggered her to develop Myalgic Encephalomyelitis (ME).
At the time of the recording, Kaeley was severely ill — she was barely able to lift her head off the pillow — but was eventually able to record an entire album. At the time — over the course of several conversations with Kaeley — she inspired MEAction to launch a virtual art and music concert called BedFest to showcase the artistic talent of the ME community, and also to explore the experience of having ME through poetry, art and music.
As part of the BedFest festival, Kaeley re-released a music video called “Believe Her” that features photos of people with ME holding up images of themselves with a sign that says “BelieveME”. BedFest was a powerful moment that continues to live on through our Facebook group and webpage.
So, we’re going to dive in now and catch up with Kaeley about what’s been happening now since the release of her music video “Believe Her” and the BedFest festival that happened two years ago.
But before we do that, I just want to play a quick clip from her “Believe Her” music video, so you can see what that was all about.
O.K. so you can see how powerful that is!
Adriane Tillman: O.K. so Kaeley it’s been a few years since you released the “Believe Her” video and since BedFest. You’ve thankfully had some improvements in your health and were able to take that video on the road. And I understand you’ve had some powerful reactions to the video. Can you tell me a little bit about that? [phone rings off-screen]
Kaeley Pruitt-Hamm: [brief laughter] I don’t know if the audio was working for the “Believe Her” clip… maybe it was working on your end, but –
AT: Oh no!
KPH: – people got to see the selfies. [laughter]
AT: O.K. so people saw the selfies – you’ll have to go and… if you just go to YouTube and you type in “believe her music video Kaeley Pruitt-Hamm”, it should come up.
KPH: [laughter] Yes! So I actually just got back yesterday from one tour stop as part of a tour that I’m doing right now for my latest album The Canary Collective, and I changed my artist name so I’m actually now “KPH & The Canary Collective”. And so on different tour stops along the way — I was just in Seattle — we’ve been showing the “Believe Her” music video.
And in the last couple of years I have been sometimes continuing as a guest workshop leader for a job that I used to have — before I got sick –in training young high school and college students in how to be a community organizer, and organize strategic nonviolent movements for social change.
And so the last couple of years I’ve shown that video as an example of ways that people can unite all around the world to make a point, and not only feel less alone in the struggle, but hopefully change some hearts and minds: especially [those of] the decision-makers. And it’s been really amazing to have the feedback continue from, kind of, different groups: I think of it as, like, three separate groups but their Venn Diagrams [are] overlapping.
One group is awesome to hear from: people who have never heard of Myalgic Encephalomyelitis or people who are able-bodied but want to be allies, who are really changed by seeing the video and seeing so many people who have been bedridden from this disease. And often those people are people who know me and my struggle but it is actually helped me to have a lot of people in my life to see that I am not an anomaly: I am part of an epidemic of people all around the world.
And then another group of people that I’ve seen it impact is people who do understand very much what it’s like to be bedridden. And so I’ve connected with a lot of people around the world reaching out to me online and saying that it meant a lot to hear the song, and feel empowered, and less alone. And when I perform the song live I give a shout-out always to the people who were part of the music video.
And then the third group I hope that it impacts is decision-makers. My old job before I got sick was working in [Washington] D.C. for a social justice lobbying firm, and so I used to work right across from the Senate offices. And I always think about the people who are making decisions about who gets health care, and how we regulate insurance companies, and how we regulate housing rights for tenants, and all of that. And the people who are making the decisions need to definitely hear from us.
And so I sent that video to a couple people online, too. I think there’s a lot of – a propensity for doing “video lobbying” and “virtual lobbying”: if we’re too sick to go out in the streets, we can still share our stories. And I paired the “Believe Her” music video with a video that I made where [I was] interviewing some of my friends that have Lyme Disease — or terminal illness — who were saved by the Affordable Care Act, and that got sent around to a lot of different legislative aides in the Senate offices.
And I heard back from a lot of people that during the discussion two years ago around the ACA that it was very helpful to have everybody’s stories shared in a, you know, “right in your face” way, through the selfies so: thank you everybody who submitted your pictures and were brave and courageous to share your faces. And it’s not been in vain. I carry your hearts with me!
And we also… the last tour stop in Seattle there were lots of tears. But I’m doing a tour in kind-of a different way, where I’m not packing it in with lots of: “Today, L.A.! The next day, Portland! The next day, D.C.! The next day, Paris!” I’m definitely not doing that, I’ve had a lot of improvements in my health but I still have to really pace myself.
So, actually, I just launched the tour in September, and I haven’t been well enough to really go on tour until just this September. But we’re doing “house shows” so that we can include people who are sick, and make sure to curate the space so that it can – we can make sure it’s wheelchair-accessible, and dealing with, like, traditional music venues and bars… it’s a little bit more difficult to curate and facilitate so that people with different needs can attend. And we’ve also been livestreaming the shows so that people who are unable to get out can view [the shows].
So, The Canary Collective is out there, it’s on Patreon for patrons for now and then it will be out to the public in February and I’m really excite to share it because it includes Jen Brea’s voice and many other “Canaries”: people with chronic illness.
AT: That’s great. Now tell us – it’s wonderful to hear the impact of the “Believe Her” video. It’s really inspiring! Can you tell me — tell us — a little bit more about The Canary Collective album and sort of what it’s all about? For those who are, you know — look out for it! — you can go to her Patreon page if you want to support Kaeley and see the video. And also look out for it in February as well!
KPH: Yeah, um – I have a policy for anybody who is sick with ME or any kind of chronic illness, and you’re unable to afford the album: please just reach out to me on Instagram or Facebook. Just Google “KPH and the canary collective” and you’ll find me – and just tell me, and I’ll send you a copy of the album because the goal of the album is to — partially — to feel like I’m sharing solidarity with people who… I know what it feels like to be feeling really stuck, and it’s always good medicine to me to hear other people’s stories, and remember that I’m not alone.
But I – it’s really easy to forget [laughter]. Every day I feel like I have to remind myself and that – it was especially hard to remind myself when I was not really getting off the couch or the bed.
So The Canary Collective, I got a grant to make: [there is] this organization in King County (in [the] Seattle area) where I was living — being cared for by my parents for a couple years — and their goal is to provide cultural services for underrepresented voices and… in King County and beyond. And the “cultural service” – I applied for the grant, and [that I] said I would provide was an album of music featuring many different voices of people who are struggling to afford health care. And then also a series of events that highlight those voices live and in-person, and then are recorded and shared and livestreamed for people who are unable to attend in-person.
And the goal was to help people to feel less alone in the chronic illness community, as well as encourage dialog among everyone in society — able-bodied and not — to talk more about bias in health care, as Jen Brea has done an amazing job with her Ted talk, talking about, and also the ties between human and environmental struggles that are going on with some ties to some chronic illnesses being perhaps related to some of the environmental issues that are happening on our planet.
And so I got the grant a year and a half ago and at the time I was still pretty sick, and I tried to record, but then life happened and I – my environmental illness: my Mast Cell activation, and chemical sensitivity, and mold illness became so severe that I had to start living in a minivan, in the back of my parents’ minivan.
And I actually decided to move to Southern California this time last year, based on someone who came to one of my shows when I was performing in Seattle. And she was another Canary – she has Chronic Fatigue Syndrome – and she said “Have you considered that mold might be a big factor in kind of suppressing your system? Because I’m thinking about for the winter going down south.” [laughter] And she, like, came up to me after –
AT: Kaeley, where were you – where were you living at the time?
KPH: Seattle, the, when I was performing –
AT: Seattle, right. Okay –
KPH: – So –
AT: – So, like sort of “mold territory”, right, with all the dampness?
KPH: Yes, yes! So there are a lot of people who are pretty sick from mold, uh, potentially [laughter] in Seattle, or, you know, sick from other things, but our systems get weighed down by mold. And so I – you know, that was just another connection, because I played [the] “Believe Her” song, and it resonated with these women in the audience and then they came up to me afterwards and… it’s just, I’m, I’m – whenever I share a song I’m – kind of – have “Seller’s Remorse”, like when you sell a house and you’re like “Maybe I shouldn’t have!”
I have, like, remorse about sharing my story sometimes? Because I’m like –
AT: It’s a good story!
KPH: – “uhh, that was awkward” and like, “maybe I shouldn’t have –
KPH: – maybe I said too much and I’m making this about me” and like, “uhhhh”… but then I’m always proven wrong – like, by the end of the show, there’s always at least one person who comes and says “Me too!” – you know, there’s always one person who says, like, “I have been disbelieved by doctors for so long” or even someone who, you know, gives me an insight and to what I can do, and that makes it all worth it.
And so in this case it completely changed my life to meet this woman Wren, who – she’s also a singer-songwriter with Chronic Fatigue Syndrome from Seattle. And we both decided to move south; my doctor encouraged me as well, my Lyme-literate doctor. And I tried, like, I experimented with the van because – just as Wren also experimented with different climates, and sleeping in tents. And it was amazing the difference I felt when I started sleeping in a van and I – I would wake up breathing the fresh air, and, you know, I woke up and my stomach was, like, calm, and my sinuses were calm and I didn’t feel like –
AT: That’s incredible.
KPH: – Yeah, I didn’t feel like I had to sleep for another five hours. [laughter]
AT: So did you drive the van down from your parents’ house, or did you have to buy a new one? That hadn’t been, sort of, tainted by the environment?
KPH: Yeah, I – I did end up buying a new one: the Ram Promaster High Roof with plans to, to – you know – revamp it and deck it out wiht non-toxic materials and insulation. And I tried for two months and kept on experimenting with sleeping in there, and I would have terrible, terrible chemical reactions of insomnia and, like, my eyes would – basically, if I closed my eyes, I would feel like there was a strobe light disco party going on? Like the brain inflammation was back? The chemical outgassing of – you know, it was a used one and there, there were too many chemicals in the, the cargo van.
So then I sold that [laughter] and I just ended up using the 2004 minivan that was totally imperfect, but I just slept with the windows open. Just that amount of difference was – you know, it wasn’t ideal, like a lot of people really focus on trying to create a really ideal environment when they’re doing mold avoidance, but I just – I didn’t. I wasn’t that strict, and I still felt amazing differences.
AT: Oh, that’s amazing!
KPH: And – yeah!
AT: That’s very – that’s wonderful to hear.
KPH: Yeah! And so then I – I actually spent a couple nights on San Juan Island and that’s a whole other story. But: I had magical rendezvous with Orca whales from shore, which was like my dream come true, literally –
KPH: – And I’ve had a recurring dream that that would happen since I was five, and it’s never happened. And I’ve always tried to make it happen, and I finally – I was like, I am forcing myself to drive, where – I hadn’t driven in five years, and I forced myself to drive the hour and a half there and then, like – I was sleeping in my van and waking up, and going to the beach, and then seeing these Orca whales breach. And I was like, “Okay, I’m on this path! This is the right path!”
AT: [laughter] Oh!
KPH: It’s been a magical year. I moved to Southern California and I – I first thought I was going to move to Ojai, but then the fires – if there was any dip in air quality – the fires, which are going on right now in L.A. again… I would be unable to talk, my throat would swell, my tongue would swell, and Wren – my friend who told me to move south – came to visit me in Ojai, last year in November [on the] 4th.
And we were both, like – unable to talk to each other [laughter] because our throats were so… we were so – like, our eyelids, you know, were drooping, and so we woke up the next morning and we were like, “This is ridiculous.” Like, we want to, we want to hang out with each other, and she was sleeping in tents, you know – she had been sleeping in a tent outside her parents’ house. And I – we looked at each other and we were like, “Let’s go to Joshua Tree!” We just had a feeling. And we researched and that was the closest place with clean air quality, and so we forced ourselves –
AT: – For people who don’t know, Joshua Tree is in the desert, a desert region, in Southern – in the southern United States.
KPH: Yeah! It’s – it is a really wacky place. I thought that Joshua Tree was just one tree – I had never been to a desert climate in my life [laughter] –
KPH: – but it’s multiple trees, a national park, and it has a little town next to it. And so we drove there and I – I moved to Joshua Tree. I ended up buying a trailer that was made with nontoxic materials, and mold-resistant, that was built for someone with ME, and chemical sensitivity and Lyme. And –
AT: Oh, wow!
KPH: – I – Yeah! And I ended up going into that trailer and – anyway, this is a really long story [laughter] but probably people are interested because we’re all desperate for answers.
AT: Yeah – I think people are always interested and you know, mold avoidance stories, and how that works out, I know it’s – can be tricky. Well, I also want to ask you about the – so you were talking about Joshua Tree and it is a really beautiful place, sort of, like: golden sand and rocks and this beautiful blue sky, and then these little Joshua Trees that are sort of knobby at the end.
So, and – so you actually set your music video “Dam Dam” there which you released on October 4th, and – on YouTube – so, for anyone who hasn’t seen the video, it’s called “Dam Dam” – d-a-m, d-a-m –
AT: – I still have the images in my head and so, I’m just – I just wanted you to talk a little bit about that music video and sort of – the production and inspiration for it and well… I’ll link to it at the end of this article, so people can see, but yeah: go ahead Kaeley.
KPH: [laughter] Thanks! So “Dam Dam” is the first single off the album The Canary Collective.
And I think I started talking about my whole van debacle because I was trying to explain the recording process of this album has been quite the journey, because [laughter] my life has been quite the journey!
But I am – you know – the album’s finally done, and “Dam Dam” was the first music video, and first single that I released out of it, and it’s kind of one of the main anthems and themes of the album. And it comes after – in the album version, there are interludes that feature spoken word, and clips from Ted talks, and quotes and speeches from powerful women, and queer and gender nonconforming people who have chronic illness, and Jen Brea’s quote is the first one that you hear.
And it’s leading up and introducing “Dam Dam” the song, and it’s a quote that – basically I’m misquoting her – but, to paraphrase she says [that] when I first started getting sick, I found myself – I just found that I’m a part of a cohort of women whose bodies are falling apart in their late 20s, and what’s striking is how the similarities of how hard it is to be taken seriously in doctor’s offices.
And citing that – you know – [the] woman with a… [a] friend with a brain tumor that was misdiagnosed for years as anxiety, and all kinds of doctors saying, “You know, I don’t see anything wrong in your body so” – you know – “take a Tylenol and go home.” And this song “Dam Dam” I wrote after I finally found a doctor who said, “How about you try this specific combination of antibiotics that treat Lyme disease, in the biofilm form.”
And there are lots of ways people disagree about treating Lyme disease, or if we should, or whatever, but I had this neck pain in the back of my neck and the base of my skull that was searing pain that – it was relentless for four years from September 5th, 2014, when I was 25, and I got a bug bite on the back of my neck, and my lymph nodes swelled, and I had night sweats, and I was vomiting — and everything — and I went to the doctor and they were like “[clown voice] Well, here’s your Tylenol! [sic]” [laughter]
And, like, tested me for Lyme disease – and the blood test is less than 50% accurate – so [I] got a false negative, and so, for years — for months — I was trying to solve this neck pain, and it would not go away. And then, finally went to a Lyme literate doctor — who is, of course, $750 for an appointment, so I had to fundraise like [laughter] heck to get that appointment – and then, finally, I took these antibiotics, and within like two days my neck pain went away, finally.
KPH: So I wrote this song right after I just got my neck back! [laughter] And it’s – it felt like a dam was breaking open, letting loose the flow back from my head to my toes. And I felt so much validation and anger how many months and years were wasted with me trying to figure out this pain, because I went to doctors and they were doubting that there could be an infectious component to what’s going on. And they were just saying “Try holding your pencil differently”, “Try getting a different pillow -” [laughter] “- and sleeping on…” –
AT: [laughter] Right!
KPH: – And like no! This does not feel musculoskeletal! You know?
KPH: And it could be – I know that Jen’s had some, like, success with treating the cerebral spinal fluid. Kind of – the compression in the neck, and that can be the – you know, one of the puzzle pieces to why a lot of us have the neural inflammation but – that, that music video for “Dam Dam” is a bunch of other people who have Lyme and chronic fatigue syndrome and Chron’s disease and we’re dancing in the desert amongst the Joshua Trees on a full moon in August. And Panda Landa is the videographer and the direc… err, sorry – the director and the choreographer for the music video, and they did an amazing job, and I’m excited that it’s out.
AT: Yeah, so – I didn’t realize that the other dancers in the video also have chronic illness. That’s realy interesting!
KPH: Yeah, some of them. Mmm hmm.
AT: Okay, wow! Well, thank you for telling that backstory; that makes the video even more powerful in my mind. So I – I also wanted to talk to you a little bit about – just, I – when you… when we talked about Hi From Pillows — your first album — a couple years ago, you had just talked about, you know, the idea of wanting to use music and art to – to be able to sort of viscerally connect to people who don’t understand chronic illness?
I know that you’ve also been able to actually, like, directly use your video for activism as well. But I – yeah, just tell me a little bit about why you think that art is powerful for – music especially – for, for sort of reaching out to people, and this sort of activism.
KPH: I – I think that I may have told this story before a couple years ago when we were talking. But it’s worth saying again: that I was really inspired by one of my best friends — who is able-bodied — from college who worked for a research program at University of Washington that researches a special rare disease in which the immune system has something going on that people don’t quite understand why the immune system is doing what it’s doing.
And it’s showing up in a lot of young people, and she said – she… This doctor was the guy who founded the whole program and got millions of dollars for research and really spearheaded it, and I asked her: why did he get into that, why is – why is he focused specifically on that disease: it’s very rare, and he isn’t affected personally.
And she said it was actually because he treated a patient, and the patient’s son had this condition, and… the son, or the father – I can’t remember – wrote a book of poetry about the experience of what it’s like to have that disease. And the doctor read it, and was so inspired to really empathize with that experience that it – it felt urgent to him to figure out why in the heck this was affecting people, and what was the mechanism happening, so –
KPH: – that inspired me to say, “You know, you know art can really – even people who aren’t affected directly by something – it can increase the mirror neurons, and inspire someone -“
AT: – yeah –
KPH: ” – to act, and to use their privilege to be an ally.”
AT: Yeah – I know that’s something that we’ve talked a lot about — at MEAction — like, how, you know – how to use the medium of the day: art, and documentary, and movies – you know, because I think, you know even like in a book or in a movie if you see someone with that experience of that illness it provides validaiton to it? It’s sort of like, the… it just lends credence to it within the culture. So I think that all these things do add up to erasing some of the stigma and helping to educate people.
So my last question for you is — I just — I was just wondering if you have any takeaways: it just seems like you’ve been on such an intense journey ever since getting ill with Lyme disease, and developing myalgic encephalomyelitis. You’ve been able to continue your passion as a musician even though you’ve had to adapt, sometimes even just making music in your bed. So I was just sort of wondering, kind of like taking stock, if there’s just anything that you’d want to share about what it’s been like and maybe what you’ve learned or any advice for people, you know – [laughter]
AT: – maybe not, you know, specific advice, but just – kind of like stepping back.
KPH: Yeah! Well, I’m so glad to be connected with MEAction. It was really a turning point and I am so thankful for the work that you all are doing. And I am so thankful for everybody that worked so hard when I was too sick to really be involved — doing so much of the legwork in organizing people for Bed Fest, and putting that together online — so, first of all, thank you for everything that you are doing for the ME community, and beyond. And it’s really hard to measure the effects of your work while it’s happening, but I do believe that there will be a documentary made someday about the – [laughter]
KPH: – ME movement, and MEAction, and Jen Brea, and everyone will be, you know – known as key players in raising awareness, and taking action.
And I think that is one of my main takeaways from this experience is that it is difficult to measure the effect of someone’s advice or someone coming into your life, until you have retrospect. And I think that it’s — you know — it’s always… it’s not always better, but I feel like, more often than not, it’s better to get outside of our boxes and connect the dots.
You know, Erin Brockovich, she connected the dots – that was the missing link – there were a lot of people in separate houses in California who were being poisoned by this company that was poisoning the water supply and trying to cover it up. And there was one little nine year-old who was getting leukemia, and one woman who has fifteen miscarriages mysteriously, and someone who – her whole family has a chronic cough all of a sudden, and this family has cancer, and: they all are being told by doctors in separate doctor’s offices that there’s no connection and that – it’s really them as individuals who just need to get their act together.
But instead of placing the blame on the individual, we can find “people power” by connecting the dots, finding the trends, and continuing to ask questions and say “You too?” “Me too!” and “Why? Why is this happening?” and “What can we do to avoid this happening to so many people if it’s unwanted?” And so I’m inspired by people like Erin Brokovich.
And another person I’m inspired by is Erica Chenoweth, who is an awesome researcher from the University of Colorado, who found that nonviolent movements are twice as likely to succeed as violent uprisings, and within nonviolent movements: if 3.5% of the population is engaged in some way, then the nonviolent movement statistically does not fail to achieve its goal. So if –
AT: You don’t – you don’t need much of the population to –
AT: – to ally with you in order to make change.
AT: That’s very interesting!
KPH: We don’t have to get 70% of the country on or side. We are 3.5%! You know, we have us and our families and those who love us, we – like, we have the numbers if we can feel empowered enough to act in some way, whether that is just sharing your story through a song on YouTube or holding up a sign from your window, taking a photo, and sending – Tweeting it out to the NIH ME leader, or the neurologist who we’re trying to – what is his name?
KPH: The neurology head at the NIH that we’re targeting?
AT: Oh – Dr. Koroshetz. Dr. Walter Koroshetz.
KPH: [laughter] Koroshetz!
AT: [laughter] Yeah –
KPH: [laughter] Tweeting him with “#notenough” or actually being well enough to get in a wheelchair, and get to a bullhorn and combine in person at an action. Or just having a private one-on-one conversation with somebody who could have their mind opened: all of those ways. But still being connected to the overall umbrella movement of “#thecanarycollective” or “#believeme” –
KPH: – when we unite and we don’t focus on the things that separate us, and our different diagnoses, and the different solutions that we’re finding — whether it’s brain retraining, or surgery, or mold avoidance — like, we can’t get divided, we need to keep that 3.5%
And I believe that we can change hearts and minds and we can combat bias in the doctors’ offices – and I’m very inspired by Act Up, AIDS movement activists as well. And I know we’re facing a different context — very different context — and a different disease, but we can learn from these past achievements of people who didn’t give up.
AT: Well, thank you for that, that’s so well said, and very inspiring. I just want to thank you for everything you do, for putting yourself out there: I know it is really hard. I don’t personally know but I can imagine that it’s hard to be – to sort of put out your own experience, and to put your own face out there, and I think that people really do appreciate that. So thank you for – you know – continuing to share your music, and your art, and for your time today. And we will talk to you soon!
KPH: Thanks so much for your time Adriane.
AT: All right – bye Kaeley!