This is a very special collaboration, for a lot of reasons. It’s a long read, but it’s really, really worth it. Find a comfy chair and dig in!
[SIDENOTE: My new Soft Punch single, “Astering,” is coming out on Bad Friend Records on November 5th; mark yr dang calendars!]
I rarely get the chance to talk to anyone else with a major chronic illness. But for this post, I reached out to Kaeley Pruitt-Hamm, a 32 year-old musician and healer living in Joshua Tree, CA, who has dealt with many of the same wild problems that I have.
When Kaeley was still living in DC, she played a house show with the Sara Curtin Band (featuring Brendan on drums!). Sara was smitten with Kaeley’s voice, and rightfully so. Shortly after Kaeley became very ill, Sara released Kaeley’s EP, “Hi from Pillows,” on her label, Local Woman Records.
“Hi from Pillows”
Sara later introduced me to Kaeley over email, but I only got to chat with her virtually for the first time a few weeks ago. In fact, our first Zoom conversation went so long that I later crashed because of it–we just had so much to talk about! We scheduled a second call to wrap it all up, and you can watch the big finale of that conversation in the video attached to this post.
Some backstory:
At the age of six, Kaeley got bit by a tick. Though she got the telltale bullseye rash, she didn’t get any formal treatment for Lyme at the time. Afterward, she began having chronic strep throat symptoms, but she was otherwise functional.
In her mid-twenties, while working hard at a non-profit in DC, her health abruptly collapsed. Bedbound and confused, she was diagnosed with Myalgic Encephalomyelitis (ME/CFS) and Postural Tachycardia Syndrome (POTS), conditions we both shoulder.
Like most of us with chronic illnesses, she eventually racked up a slew of other diagnoses as well. Ehlers Danlos Syndrome (EDS), Interstitial Cystitis, Mast Cell Activation Syndrome (MCAS), Chemical Sensitivities / Environmental Illness, and Chronic Lyme–an infection that likely began with her childhood tick bite, and in combination with other stressors, likely helped trigger some of her other ailments.
When the ME/CFS hit hard, she had to stop working. Kaeley saw specialist after specialist, without much relief. A close friend begged her to see an energy healer, in spite of her serious skepticism, and after running out of other options, she agreed to go to a Qigong retreat. She had to bring a mat to lie down on, because her POTS made it impossible to stay upright for long. The healer eventually made his way over to her, said a few words and moved his hands over her back. Immediately, her sinuses cracked open. She stood up and danced around the room. Whatever illness was going on with her body, there was clearly still reason to hope she could improve.
The effects of the healer lasted a full three days–much more than a momentary fluke. She wanted to know more, so she began studying with healers from different shamanic traditions. Sometimes working with a shaman would trigger a sudden improvement, other times it was gradual. As she trained in Reiki, a type of energy work, she also studied sound and vibrations. Recently, she got certified in using Celtic sound healing as part of her Reiki practice.
We talked about all of this, and then she gave me a demonstration of her work, which you can watch in the video. In fact, if you’re interested in working with her yourself, she’s open to skill shares and donations–you don’t have to empty out your savings!
It’s Kaeley!
I’ve edited and condensed some of the most interesting bits of our conversation for your enjoyment. We covered so much. However, if you want to understand the specifics of her Sound Healing practice more deeply, you’ll have to wait for the next “Sketches & Stories” post!
+ + + Q+A + + +
RL: Hi! How are you today?
KPH: I’m doing pretty well. I’m out here in the desert, in Joshua Tree, CA. How are you doing today?
RL: I’m all right. I don’t presently have a migraine, which is good. Last month, they were super severe and constant. It felt like being punished for something, you know? Brendan and I had to figure out that I was actually on a drug for CFS that was making the headaches worse.
I have some of the best specialists in the world, but the CFS specialist doesn’t deal with headaches, and the headache specialist isn’t looking at my CFS drugs. It’s not really a medical system that’s well-equipped for chronic illness in general.
KPH: Nope. Or looking at the body holistically as an interconnected system. It’s just so siloed into these specialists that are like, “Well, I specialize in the left pointer finger.”
RL: That’s literally what I wrote about in my last newsletter!
KPH: You are such an eloquent writer, so entertaining. I see why so many people have hopped on board to be your patrons. I’m so glad that you have Brendan–what a power house! What a power couple team you are. It’s so inspiring to know, at least you are being your own detectives together.
RL: Actually, I think he was the one who specifically figured out that drug. He keeps things organized. We have a binder of all my tests and histories that we bring whenever we go to a new doctor. His insurance is also very good, and I’m on it. That’s a big deal. Did you ever have insurance issues?
KPH: Yeah. I was working in DC as a lobbyist for Friends Committee on National Legislation (a nonpartisan Quaker organization that lobbies Congress to advance peace, justice, and environmental stewardship) in 2014, 2015, when I really had my health crash. And that’s when Sarah Curtin, with Local Woman Records, helped me make an EP and put it out there.
I got sick when I was working a desk job, and I was healthy enough to work and travel around the country, doing workshops on climate change and doing, you know, a lot of typing at a desk. By the point that I had to leave, I was unable to walk to the bathroom on my own, I had such swollen knees. I had light and sound sensitivity, and I had to wear earplugs and a blindfold 24/7, pretty much.
So, I was pretty darn disabled. But when I applied for disability through mutual of Omaha, which was the insurance company that the non-profit I worked for had, they denied me. What these insurance companies do is they pay certain doctors to review your medical records and say, “Well, your doctors are saying that you’re disabled, but we disagree.”
They told me, “This is what our doctors are saying.” The actual letter that they sent said, “There’s no possible disease that exists that involves both the gastroenterological system, the cardiac system, the nervous system, and the musculoskeletal system. Thus, you have somatoform disorder, and we advise that you continue working full-time and receive cognitive behavioral therapy.” And that’s the only thing that they would cover. Getting counseling,
RL: I can’t believe they really said you have somatoform disorder, in other words, a purely psychological problem. That’s just like the way they used to dismiss women, by diagnosing them with “hysteria.” Despite your doctors, they still said, “No, this is just a cognitive disorder.” At that point, did you have any idea what had really happened to you?
KPH: By that point, I had been referred to a specialist, who referred me to a specialist, who referred me to a specialist, who referred me to a specialist, who referred me to a specialist. I finally went to this pain specialist at a pain clinic in Virginia for my hand pain, because I was crying from how much it hurt me to type. At this point, I was just picking my symptoms, like, “I guess I’ll work on my hand pain today and ignore fact that I’m peeing seven times a night.” The hand specialist, she herself had Lyme disease, and she said, “Oh, you have Chronic Lyme, I bet.” And I said, “No, no, no. They’ve tested me for Lyme a bunch of times.” She was like, “Oh, did you know that those blood tests are less than 40% accurate?”
Insurance will only cover Lyme treatment if you use a specific ELISA blood test, and then you have to get a second titer test. And it’s really, really unlikely that you’re actually going to get a positive. Later, I tested positive with special labs, and the hand specialist explained to me how it can affect the whole body. It can mimic, too. A lot of people get diagnosed with MS, or Alzheimer’s, or ALS, or fibromyalgia, when some of the root causes can actually be, for example, microbiome disruption by Lyme.
There’s not a generic drug you can take to mask symptoms, and you can’t take immunosuppressants. But that’s what traditional Western medicine wants you to do.
If you’re diagnosed with an autoimmune disorder, that means, “We looked inside your body, and there are all these soldiers firing. There’s inflammation everywhere, and the soldiers are shooting. That’s your immune system. But we looked, and it’s shooting itself. There are no enemies. There’s no reason why they’re fighting. So, we’re going to give your soldiers sleeping pills and put them to sleep. And we’re going to kill your internal soldiers,” which, sometimes you have to do. Sometimes you get an overreactive immune system, for sure. But when we have pathogens and viruses that mainstream medicine isn’t finding, that can be, well, not the best approach.
So, the hand doctor gave me a paradigm shift about what might be the root causes going on. But when I received that letter that was like, “Oh, you have somatoform disorder,” I was still doubting myself and doubting her. I wasn’t sure. And you know, I’m still not sure. I’m still like, “What is going on?” It’s so hard to have all of these doctors, and all of these experts that you should trust, saying adamantly, “No, Chronic Lyme doesn’t exist.” And then there are these other people saying adamantly, “They’re all wrong. It does.”
RL: Yeah, that is hard. Would you say that your ME/CFS is separate from your Chronic Lyme? Was it triggered by your Chronic Lyme? Or is your ME/CFS just a symptom of your Chronic Lyme?
KPH: That’s a good question. I think it’s all of the above. It’s not separate, that’s for sure, but you know, she diagnosed me with CFS or Myalgic Encephalomyelitis. I have all of the symptoms of that. What I was at first diagnosed with, before Lyme, was dysautonomia or postural orthostatic tachycardia syndrome (POTS). If I was lying down, my heart rate was like 80 beats per minute. Then I would stand up, and it would skyrocket within five seconds to 170 and not slow down. The doctors would show that my heart rate would be one thing when I was lying flat, and then I would just put my shoulders back, and within seconds my heart rate with double. And they said that was “anxiety.” You know, like, “take some deep breaths.” But no matter how many deep breaths I would take–for hours, I would be so chill–it would just be like this physiological thing going on.
It was triggered by so many things, but you know, the POTS specialists were saying, “Oh, sorry. Most patients, especially around age 25, who have this–pretty much the only treatment is to get saline infusions every day. You can get a chest port implanted, so you can carry around an IV all the time.”
I tried going with what insurance would cover. I went to all these specialists who are within mainstream medicine, and that’s the wise thing to do, because that financially made sense. But it ended up being such a waste of my life, a waste of time, a waste of money, and a waste of my health, because their analyses were just so wrong.
I guess I had to go through those original hoops, but the rheumatologist said, “You have CFS so severely, you’re probably not going to be able to walk on your own more than a half a block, for maybe 20 to 25 years.” But he literally said, “Come back to me in 20 to 25 years, when there’s more research on this. In the meantime, I’m giving you a prescription for Provigil. We give it to nighttime bombers in the military to help them stay awake. If you want to go back to work, take Provigil so that you can keep your eyes open.” But even in the doctor’s office, I couldn’t keep my eyes open. I couldn’t sit upright, I was lying down, I had sunglasses on, and he was telling me to go back to work. It’s crazy.
So yeah, I think CFS, the symptoms of that, you know, can be triggered by so many things, even emotional trauma. If you go through a divorce or a death of a parent, paired with a huge exposure to something–a lot of people get CFS or chemical sensitivity symptoms when they’re working in an office, and then people install new carpeting with these glues that are extremely toxic. There’s a book by this man named Alan Bell called “Poisoned.” He was a Miami lawyer, a really successful lawyer, and he became bedridden with CFS for years after he got toxic building syndrome.
I think Lyme disease is just another trigger. It’s like if you have a table, and people are bringing things to a potluck. You’re bringing casserole, someone’s bringing hamburgers, a broccoli dish, and jello. Once someone sets the jello on the table, then the table collapses. Some doctors will be like, “Well, you need to never have jello again.” Like it’s the jello that’s the problem, right? When really, you need to make sure that the legs on the table are sturdy.
I think there are a lot of different interpretations of the reason I’m sick, or the thing to blame, but all of these syndromes, like CFS and POTS, are names of what’s happening, not the root cause.
RL: That’s so interesting. I have those two syndromes as well, but not for the same reasons. I’ve also had some pretty negative experiences with healthcare, like small medical traumas, but I’ve never been dismissed quite like that. Of course, I worry about it every time I see a new physician. Maybe I’ve been lucky partly because I’m a white, college-educated male. I sometimes wonder if I had never worked at The Washington Post, if I would be treated differently. Going from freelance gigs to being housebound doesn’t have the same dramatic arc as going from The Washington Post to being bedridden. But let’s pivot to the music, and sound healing, which is why you’re here.
KPH: For me, it’s also a fine line, because somatoform disorder is real. The connection between the mind and body is so real, but it’s misunderstood. It’s bent and misused by the Western medical system to blame individuals and to refuse to get them the physical medicine they need. There is a lot of internalized skepticism and doubt that I have around people who are like, “Just take a deep breath and listen to your heart chakra,” and all of this wave of spirituality. It’s been de-legitimized.
I discovered, though, that a large part of what has helped me, and possibly why I got sick, was emotional, spiritual trauma. And that’s been a really hard pill to swallow. What actually got me better was exploring Eastern medicine. My best friend’s mom, she was so adamant about it, since I got really, really sick. She was like, “You should try Qigong, you should talk with my Qigong master.” I was like, “Oh, okay. How would that possibly help? I am so severely ill, I can’t walk to the bathroom on my own. I have a sore throat constantly. Really, you’re telling me that if I move my hands around and don’t touch anything, that would actually do something?” But I hit a wall of like trying so many different treatments and IVs and antibiotics and all these medicines with doctors. Finally, I was like, “Okay, fine. I will try it.”
I went to this like seminar over a weekend with this man who is a Qigong master from China, and it totally exploded my paradigm. He said, “In indigenous, shamanic, energy healing cultures around the world–whether it’s Eskimo or Chinese or Norse or Peruvian–they would look at someone like you, with this type of severe illness, and they would as, ‘What’s going on at the spirit level?'” You know, I don’t really even believe in the spirit for this, but at the energetic level, there are these unseen vibrations that are underpinning physical reality. He said, “You are taking on all of this outside energy and trying to heal other people accidentally and energetically; you’re getting everything stuck in your system.” He held his hands outside my back, and I was crying, and feeling terrible abdominal pain. In this seminar of 40, with people who had cancer and diabetes–really sick people–I was the only one who was too sick to stand up. So I had this like bed that I was lying on, in order to attend the seminar. He didn’t even touch me. He burped 40 times and he basically did like an exorcism. He was like, “Your spirit has taken all this energy,” and my sinuses cracked. They opened. And all of the sudden, I got up and danced across the room. It was like the sickness was like lifted off of me, and underneath all the layers of fatigue and CFS symptoms was like healthy, vibrant, energetic Kaeley.
It was wild that I hadn’t felt in four years. So that was a life-changing moment that got me into studying with indigenous rooted medicine, where people are viewing the mind, body and spirit all together. Just like hearing myself say it, I know you’re dismissing me like, “Oh, this girl in Joshua Tree.” That East Coast paradigm, the majority is going to be like, “This girl is totally crazy.” But that is what helped me the most.
Sound healing, working with vibration and with frequencies that are supposedly extra good at removing stuck energy from energy centers, has been really, really helpful. I used to get sore throats two or three weeks out of every month, so I couldn’t talk or sing. Doing energy healing and journeying with shamans has diminished that symptom by 95%.
RL: If someone wanted to hear more healing music, like the music that inspires you to make music, who would they listen to?
KPH: I love Mei-lan Maurits, who is creating on Patreon as well. She has a YouTube channel. I was told that I have postural orthostatic tachycardia syndrome and a bunch of inflammation and issues with my heart. My doctor told me, “You should really explore sound healing tones for the heart.” That’s actually how I got into this, looking into sound healing last year. I started to listen to her music. She says she just intuitively channels what might be relaxing music to fall asleep to and different things like that. And I definitely look up to my mentors in the shamanic practice, like Raina Imig, out of Portland. She was trained in the Lakota tradition, and of a lot of the mentors just kind of say they intuitively create stuff.
RL: Going back to that conference, did that healing effect wear off? What was the progression like?
KPH: Yeah, it wore off after three days,
RL: That’s a long time though!
KPH: Yeah, it was. It was three days of this window into, “Oh my gosh, it’s possible to feel healthy again.” And that sparked my drive again to say, “Okay, there’s a way. Underneath the layers of illness, Kaeley’s there.” I was always Kaylee; sick and disabled and no matter what. I was in a wheelchair and using a cane a lot, and if that had been the rest of my life, I would have had so much value and worth, and it would have been a beautiful, wonderful life. But if I had the chance to have some relief from the pain, I was going to try and take it.
So I kept on studying Qigong, and then I studied with a bunch of shamanic practitioners. After three years of schooling, I’ve become a Celtic, shamanic, journeying practitioner, and I get certified as a sound healer in a week. In the progression from these last three years, I’ve continued to work with shamanic practitioners who are trained in Native American Lakota traditional shamanism, Peruvian, shamanism, and Celtic shamanism. My symptoms just kept on getting better and better through that, as well as from moving to a new climate.
It doesn’t mean that I was only focused on the spiritual, and that I just got better. I still had to take medicine, and I’m still taking antivirals (an off-label therapy for ME/CFS). And I’m doing environmental healing, because mold was a big disempowerment for me. I moved to a climate where my body got a break from the moldy housing that I was in. Just being in this drier climate with cleaner air also gave my body the chance to lower the inflammation levels overall.
But I’m doing music as KPH and The Canary Collective. The Canary Collective is symbolizing how many people are out there as canaries in the coal mine, who are feeling the effects of the earth’s systems being off-balance. When we stopped singing our songs, that is a cue for people to get the hell out of this mindset and start living with Earth’s resources differently, and stoo putting toxic shit into all of our products. Our housing is built in such a way that mold is really common–
RL: You know, we actually have a mold problem in our house that we’re currently dealing with. And I know folks with ME/CFS who are affected pretty dramatically by mold. I have taken a few special tests to see if I might be sensitive to mold, and they came back negative, but they’re not entirely conclusive. The next step would really be for me to somehow camp out in the desert for a week or two and then return home to see if I react to mold afterward. But of course, I can’t sleep in a tent, because I’m way too sensitive to light. And Brendan would have to take weeks off from work to drive me there. And if it turned out I was really super sensitive to mold, I’d have to move across the country to find drier spaces. I can’t live without a caretaker, so Brendan would have to move with me and find a new job. It’s just crazy how expensive and speculative this stuff gets, the further away from the mainstream you go.
KPH: Right. It’s very inaccessible. And I don’t blame you at all for not being physically able to leave your home, you know? I think that’s what gets me kind of fired up and mad about the way that a lot of spiritual healing or Lyme doctors kind of go about things. They’re like, “Just invest in yourself,” and it’s $6,000 a month to try these IVs at this specialty clinic, and I don’t know how to afford housing there or find it, and I need a caretaker if I’m going to be going through this treatment. Not everyone has that.
If you were looking at Flint, Michigan, and the lead poisoning in the water, there are all these children who are getting terrible cancers and health effects from that. If you tell a single mom who’s trying to support her children and get by with three jobs, whose child is sick from the lead in the water, you don’t say, “Well, there’s this specialty clinic to detox your child, and it’s going to be $6,000 a month. If you really love your child, you’re going to go and do that.” Or say, “Okay, how about you try moving?” That’s not easy. The way to fix the problem is to fix the freaking water, and punish the corporations that are poisoning the water, and have a social safety net and community programs in place, and make healthcare accessible. But if we’re not acknowledging the root causes of the problems, then we’re just putting the onus on each individual to pay thousands and thousands of dollars, if they want to save their lives, which people don’t have.
RL: That’s the trouble with the wellness industrial complex right there.
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Want to learn even more? Keep your eyes peeled for the next “Songs & Stories” post in a few weeks!
