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Doubting Her Paralysis

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Alex Chambers: Most of my doctors visits don't go anywhere. It's a little pain or lump here or there, and I tell my doctor, it's probably nothing I just want to make sure it's not cancer. So far, she's sent me home every time, nothing to worry about. I always tell her, it's fine, I wasn't worried. But I was the one who came in. It's not like she called me. And when she tells me everything's fine I always believe her, mostly. Wait, did I also have a headache? Is that another sign of things about to go terribly wrong? Because doctors do miss things, send you home when they shouldn't, tell you it's all in your head. That's what this week's episode is about. In 2014, Marabai Rose fell into a mysterious paralysis. She almost stopped breathing and when she recovered, her doctors basically told her she was fine. In this case, she wasn't. Marabai tells her story here on Inner States after this.

Marabai Rose: The first that happened was I took my son rollerskating. He was nine at the time. I fell and my broke my scaphoid bone near my wrist. Something about that seemed to trigger this really deep fatigue, and I was just exhausted. Then the bone healed, but I wasn't feeling much better. I remember thinking I just needed time off work. I has scheduled some time off work and right when I was having my little vacation, I started to get even more sick. I was really limp and lying on the couch all the time.

Marabai Rose: At that point I was sick enough that my husband was staying home with me. I was so sick, I could not even make it to the bathroom by myself. He did not feel comfortable leaving me like that. Then I started to begin to have this pretty extreme shortness of breath. Not only was I scared, but I think seeing him so scared, something about the way it was reflected in his face, felt to me like the thing that made me go, we have to go to the hospital and get this figured out.

Marabai Rose: Pretty immediately the nursing staff took what was happening very seriously. I was very pale at that point and really struggling to breathe. The definitely took that very seriously. I felt more at ease when I was there. Like, they are going to take care of me, they are going to figure this out. The first shot did not work, and then the second shot did not work. Then I was like, oh, they might not be able to take care of it. That was pretty scary.

Marabai Rose: It was a relief when the nebulizer treatment that they gave me there did work. It was a relief to be able to just breathe. It had been days of. That was tough. When they told me it was Reactive Airway Disorder, and told me they were going to send me home, I did not totally believe that. It did not feel 100 percent right to me. By that point my breathing was under control and I was really tired. I said, okay, I will go home.

Marabai Rose: I did not get any better. In fact, I was really back to the same spot with the breathing the next day. The weakness came very quickly after that. I would say the same day. I think the day after I had been in hospital for the shortness of breath was the first day that my legs totally gave out on me.

Marabai Rose: I went to my physician and she took a chest x-ray and she couldn't figure out why I was feeling so bad. She thought, you might have been hit with a virus that really took it out of you.

Marabai Rose: Day after day I was getting worse and worse. Then I started to become very weak, to the point where I would try to walk and I would have to sit on the floor.

Marabai Rose: Finally my legs totally gave out on me as I was trying to get to bed one day. They were just gone.

Marabai Rose: By the time we got the call from my physician that it was time to go, I was unable to put any weight on my legs at all. I could not stand or take a step. My brother and my husband had to hoist me over their shoulders and drag me to the car.

Marabai Rose: I think I knew that something major was happening before my husband did. He had actually delayed going to the hospital. While we were waiting for the physician he decided to take the dog for a walk on a nature reserve close to where we lived. He left and the dog got loose, so he had to track the dog down which took a long time. We waited on my husband to get back and then he said, "I want to make some tea before we go." He was an avid green tea drinker. I am like, "Scott, we have to go." I do not know if I actually said that because I was so out of it. I was so tired. I have described it in the past, it is like you are under water and you have this sense of things that are happening above the surface, but you are just lying there and you can not get yourself out of the water to talk and move and act. I was in that place.

Marabai Rose: Finally, the tea was ready and they dragged me to the car. I got in and I think it started to click for Scott as he realized I could not get my legs from the gravel into the car. I did not have the strength in any part of my body at that point to do that. Scott had to help me pick up my thighs and move my legs for me.

Marabai Rose: Something shifted and he got in the car. We got going very quickly. I said, "I can not really hold myself up." I was starting to hunch forward because it felt like the weakness that had been in my legs was moving up. Now my muscles that I used to hold myself upright were going. I was slumping forward in the car and I couldn't do anything about it. That was pretty frightening and I am sure an image that Scott will never forget.

Marabai Rose: In this moment, that I am really losing control of my body, we hit traffic. There is a street in Bloomington, 10th Street that is the main drag for our college. We are driving towards town down 10th Street and a football game got out 20 minutes before then. There is traffic lined up in every direction. There are cars everywhere and no way to get out of the spot that we are in. The traffic is not moving. Scott got out of the car and ran ahead and talked to every person in front of us, and every driver pulled their car over to the shoulders and let us through.

Marabai Rose: By the time we got to the hospital, I had very little ability to move any part of my body below the shoulders. I could probably still pick up my wrist, but that was about it. I remember the nurse coming out saying, "I need you to help me. I need you to put your arm around my neck so I can help get you out of the car." And I was like, I can't! I could not pick my arm up to put it around her neck to help get me out of the car.

Marabai Rose: Pretty quickly even being able to pick up my hand became impossible. I think the scariest thing about becoming paralyzed was, pretty soon after I got into the emergency room, into that bed, I stopped being able to move my face. So, I couldn't talk.

Marabai Rose: I remember I could talk a little bit. I also remember that it was not easy to hear me. People were having to lean in because I didn't have much function in the muscles in my face, and the muscles in my diaphragm were stopping. They were slowly quitting on me. So, I couldn't take in much air. I was slowly losing the ability to do absolutely everything.

Marabai Rose: I knew they were going to take care of me, but I also had this sense that pretty soon I am not going to be able to take in a breath. I had this stillness. You would think of something like that as a panicky or panty kind of thing. It was not that, I think because everything was weakening, it was more like a sense of stillness was taking over. It was a weird feeling because it was like in deep meditation or times when you are really calm, things can feel super still.I was having this terrifying experience, but also experiencing this absolute stillness as every single muscle in my body went still.

Marabai Rose: My muscles that make your lungs open and close were failing. They were not strong enough to make my lungs open and close. I can tell that I'm only opening a little bit now when I breathe. There is just a little bit of air coming in.

Marabai Rose: I remember pretty clearly the moment when I knew I was not going to be breathing for much longer. I could not speak at that point, and I remember trying to send the message out to the room, you need to do something now. I remember thinking to myself, my children need me. You need to do something. My husband needs me, you need to do something. I couldn't speak it, but it did feel like it worked in a way. I remember fervently, almost like a prayer, my children need me, my husband needs me, you have got to do something.

Marabai Rose: Then people pivoted to me, looked at me and were like, oh, it is time to intubate. That all happened very quickly. It was all hands on deck and I was very quickly moved onto a gurney and they sped me to a room where they intubated me.

Marabai Rose: I don't remember being frightened of the intubation itself. Which is interesting, because I knew what that was. Intubation is when they put a hard breathing tube through your mouth, through your throat and into your lungs and it breathes for you. I had actually had a lot of conversations about intubation with people because I was a hospice social worker. So, it's really important that people understand what their options are when they quit breathing and they are in our hospice program. Most people, once they understand what intubation is, do not actually want that for themselves if they were to stop breathing.

Marabai Rose: It was interesting to be in that situation where I fully knew what was going to happen with intubation and I was not opposed. I wanted to live. I wanted to live. I think it is really interesting to have had that experience because, especially when I was able to go back to hospice work for a bit after that, it is like you are helping people make peace with dying in hospice. I don't think I could fully respect how hard that is until I had that experience. Every cell in my body was like, I want to live. I want to live. It is such an incredibly overpowering feeling.

Marabai Rose: At first I was totally knocked out. I had no idea about what was happening. But, then they needed to take me out from underneath that level of sedation, because it was also too difficult for them to gage what was happening with my paralysis. How do you know if somebody has voluntary movement if they are totally knocked out?

Marabai Rose: That was brutal. That was really brutal. To be on a ventilator and be awake. They gave me a medication that is supposed to make you not remember, and it just did not really work that way for me. I mean, I am sure there are large chunks of every day that I was on the vent that I do not remember. But, there were definitely times where I was pretty conscious and able to remember. Being on the vent is such a weird experience because the air comes into your lungs at it's own rate. It does not sync with how your body wants to be taking in air. So, it is like my muscles started to come back on line little by little, very, very slowly. It felt as if I was almost at war with this machine, because I would start to naturally take in a little air, just at the time where the machine was counting it as exhale [LAUGHS]. When I would be wanting to exhale, it would be forcing all this air into my lungs.

Marabai Rose: Then they have to go in there with suction because you can not swallow anything that drops down in there. So, they were going in with this suction tube and that scrapes the back of your throat while they are using it and it is really painful. So, I woke up from this deep place of sleep. At first I think my brain thought that I was at home in bed. I am expecting my daughter, who was four at the time, to feel her little body up against mine because she came into our bed pretty much every night. Just starting that process of, I am going to have to move her to get out of the bed. All of sudden I have this sensation of, there is something in my throat.

Marabai Rose: I remember my eyes popping open and feeling this thing in my throat and having this intense gag reflex and not being able to stop. My mom is a nurse and she knew what was happening immediately and was able to come over and help me calm down so that I could quit doing that. I think she probably got them to give me some medicine and help me get a little more settled. That was definitely one of my most panicked moments of my whole ordeal, waking up with that tube in my throat.

Alex Chambers: Marabai still had no idea where this paralysis had come from. But, her doctor had come up with a theory and pretty soon it had Marabai looking like a miracle patient. More about that after the break.

Alex Chambers: Inner States, Alex Chambers. We're listening to Marabai Rose describe a mysterious paralysis that started coming over her in 2014. Her doctors decided it was probably Guillain-Barré Syndrome. It's a rare autoimmune disorder that can cause life-threatening paralysis. So they gave her a mix of antibiotics and good antibodies and the results seemed kind of great.

Marabai Rose: It was like a miracle. Within five days I was no longer paralyzed, I was alert and awake a lot of the time. When I was in the full paralysis, I didn't have reflexes at times. They would kind of come and go but by day five, they were constantly there. It's not the course for Guillain-Barré generally. Usually if somebody is affected by Guillain-Barré to the point where they require ventilation, their chances of actually walking again are pretty slim. So for someone with Guillain-Barré, to be that sick and then come back to walking down the hallway with a walker on day six, like, it's kind of unheard of.

Marabai Rose: So, it was interesting that that diagnosis wasn't questioned then [LAUGHS]. I remember the physical therapist in rehab just saying over and over and over again, like, this just isn't what we see with Guillain-Barré, but like in a way of like we're so happy for you. This is a miracle.

Marabai Rose: November 8th is when I went into the hospital and I remember by like November, say 18th, like people telling me, like, you're gonna be back to work in a month, you're doing so well. Like you are on the path to be fully recovered. And I was so relieved, because that had been terrifying and to know that I was just like gonna sail right through it, was amazing.

Marabai Rose: But then I had to go on an outing to be discharged so they could see that I could be out in the world and we decided to go to the Kroger that I always shop at on the east side of town. And you know I'd been doing okay, didn't feel bad and then we got to thepasta aisle and all of a sudden, I just had this feeling come over me, like ooh, like something is not right. And the occupational therapist seemed to get, like, we need to get you sitting down fast. And so we go to this little lounge area and I got in a chair and then very quickly, you know, I just felt that sense, like, when it happened at home but really sped up, of like, oh my legs. I am not able to move my legs and then it was like my torso and then my arms. But it wasn't quite to the extreme that it had been that day at the hospital, like I could still breathe and, you know, move just a tiny bit, like pick up a finger or, you know, I wasn't like 100 per cent paralyzed.

Marabai Rose: So yeah, we went back and I was fully expecting them to say, I'm so sorry. We're gonna have to keep you a little longer and figure out what happened. And they did not [LAUGHS]. They did not. I think I was discharged. I can't remember if it was the very next day but it was within a few days of that. I was more tired than I had been but I was okay and, yeah, they just decided, well that was just some kind of weird blip and we'll just go ahead and send you home.

Marabai Rose: So, I did go home and very quickly found myself back to being so fatigued that I couldn't get up and I couldn't move around and my color changed again to where I was just really, like, gray and pale all the time and I remember beginning to have more of those episodes where just all of a sudden I'd be overcome with this extreme weakness and wouldn't really be able to even pick up my arms and legs and would be just sort of stuck lying there until it passed. We had been given an outpatient appointment with a neurologist and we had to wait for two weeks while I'm obviously just deteriorating and finally we get in there and it felt really reassuring to see that neurologist. He seemed like a really nice person and he was like, okay, like this is not Guillain-Barré. I've seen Guillain-Barré. This makes no sense. But something is happening so we're going to run a bazillion tests and so he didn't want to see me again until all the test results came back. And so we went back home but very quickly, I mean, I was getting to the point where I was absolutely debilitated.

Marabai Rose: Eventually we actually did end up going up to Methodist hospital 'cause we'd heard that there were some good neurologists up there and they ran a whole bunch of tests and there were these like weird things that were wrong, like leukocytes were off, like, things that are just like not very typical of very many illnesses, were present in that lab work but they didn't know what to make of any of that. And so that was actually the first time that a doctor came and talked to me and said, I think you might have a conversion disorder.

Marabai Rose: A conversion disorder is when you don't actually have anything physiologically with you but your body is kind of responding to your stress, your psychological factors by having symptoms. That did not make a lot of sense to me [LAUGHS]. I was, at that point, I was a clinical social worker and I had worked in psychiatric units and I had taken a full semester on the DSM and I felt like I was pretty familiarly with what a conversion disorder was, and I'm like, yeah, but, like, my muscles quit breathing and, like, I didn't have reflexes. I don't think [LAUGHS] that that makes sense, like, these things aren't matching up.

Marabai Rose: And he was kind of non committal with that diagnosis. He was, like, well, you know, the test results just really didn't show us anything and, you know, if you want to talk to a psychiatrist so that he can make that diagnosis, you know, we could do that. And I was like, well, I mean, okay, I'll talk to a psychiatrist, 'cause I'm thinking, it's obviously not that and if I can, like, jump at this hoop by talking to a psychiatrist then, like, sure, but then they were like, but a psychiatrist won't be able to come to talk to you for three days and I'm like, what? I'm gonna lay in this hospital bed, away from my kids, for three days just to have somebody come and tell me that I don't have this thing? I was, like, no, I don't want to do that.

Marabai Rose: So I end up going home and I still had that follow up with the neurologist and he had run so many tests and I thought, okay, well, he's going to help figure it out. So I went and the first thing that he said to me was, do you know what they diagnosed you with up in Indianapolis? And I said, well, I know on my discharge paperwork it said rule out a conversion disorder and they did talk to me about that but I was, like, pretty quick to say, but I don't think that's what's happening. And he proceeded to tell me that it absolutely was a conversion disorder. He had no doubt about it. He even told me that I had probably been sexually abused and had blocked it out, and that's probably why.

Marabai Rose: And my mom was with me at this appointment and I think, you know, we were both just floored. Just floored. We were both very quiet for a while and then I started saying, I didn't have reflexes, like this doesn't make sense. And he just kind of just said something, like, well that happens. We're like, I didn't see that detail in your chart. It was really frustrating to sort of have somebody be saying like, your lived reality just isn't anything I'm willing to accept as reality and this is the only reality. And I couldn't accept that reality. It just didn't feel true.

Marabai Rose: And so finally, you know, when he said, I can't help you anymore, there's really no point in you coming back, like I'm not gonna be able to do anything for you. He said, I can set up a psychiatrist for you. You can go see a psychiatrist and, you know, at that point, I said no. I don't think that's gonna help me either and he left the room and I just lost it. I just started to sob because, you know, this was when I was gonna find out what was wrong with me. He had run so many tests. He'd sent them to the Mayo Clinic. I really thought he was gonna have the answer. I thought he was gonna say it's this or it's that. I was ready to hear I had some autoimmune disease or something. But he didn't give me any answer. He didn't give me anything that was helpful and in fact, he gave me an answer that started to erode my sense that I could even rely on my mind.

Marabai Rose: And the other thing which I quickly came to understand is once you get that diagnosis, it's very hard to find any doctor who will work with you, because they want to look at your last consults, you know, the last thing that you did to try to figure this out, and they see that and people are just so quick to agree with that, without really taking the time to look into it. It was so demoralizing, you know, like I was raised by health care people, like my mom was a nurse my whole life, my brother ended up being a doctor. Like, I really believed in the medical system. Like I've always been the kind of person who's like, you know, if you get a cold, you take zinc and echinacea, like you know, like, I've always been like a herbal medicine person. But, like, if you get Strep throat, you go get antibiotics right? [LAUGHS]. Like I wasn't at all anti-Western medicine. I thought it worked and I thought I ever got really sick that there would be answers for me.

Marabai Rose: I met with a psychologist and we had to meet many, many times [LAUGHS] for her to make her, you know, complete assessment. It took months and she found that I did not have a conversion disorder. You know, she said, you know, I think this patient needs to be sent for further medical testing. I think we need to keep looking at medical causes. I had known and I had told the doctors in December, no, like, no, this is not what is happening. And no believed me. I don't think I had the letter from her that said no, I don't think it's conversion disorder until April.

Marabai Rose: I think the way I figured it out is very, very much the way people figure this out [LAUGHS]. It's almost never with a doctor, it seems [LAUGHS].

Alex Chambers: So, I think it's a good time for a break. It's Inner States. We'll be right back.

Alex Chambers: Welcome back to Inner States, I'm Alex Chambers. Marabai Rose had a mysterious paralysis, a series of mysterious paralyses really. At first, doctors thought it was Guillain-Barre. Then they decided it was a conversion disorder. Eventually, after months and months in the woods, Marabai encountered a beneficent old woman who gave her some advice. A quick fact check, we don't actually know how old she was.

Marabai Rose: I don't remember her name, but I do remember her face and I remember how kind she was and how patient she was. And again, they ran some tests that were inconclusive and she came back in and I was expecting to her have seen the conversion disorder on my chart, and just was expecting to be blown off. And she didn't at all blow me off. Instead she sat there and she said, "I really think that you do have something. We haven't figured it out yet, but I believe you do have something." And then she asked me, "Have you been tested for tick-borne illness?"

Marabai Rose: And that same night, my husband stumbled across the Columbia University tick-borne illness research center online, and they had all these really good descriptions of various tick-borne illnesses.

Marabai Rose: And so, I had gone to bed, but he stayed up into the night reading about these different tick-borne illnesses and he found one that had central nervous manifestations. It had respiratory symptoms associated with it. It had neurological symptoms associated with it. Pretty much every symptom that was on that list, I had had. I had experienced. And when I woke up in the morning, he was like, "I'm pretty sure I found it. I'm pretty sure I understand what happened to you." And I looked at the list and I was like, "How could it not be this?"

Marabai Rose: And so, we went to my primary care physician and she, after looking at the symptom list, felt convinced enough that she actually did start me on Doxycycline. But she said, "I've never treated this kind of illness." What it was called was Anaplasmosis, the illness that best matched my symptoms. Ehrlichiosis is very, very similar, so we thought it was one of those two, Anaplasmosis or Ehrlichiosis. So, she said, "You're going to have find somebody that knows how to treat this." But she was willing to start me on an antibiotic, and that's when I started on my path to treatment and it was a long path.

Marabai Rose: It started off with a bang probably about five days after I started Doxycycline. I started to have tremors. And at first it was just in my hands and then it would extend to full body tremors that almost looked like seizures.

Marabai Rose: I just thought, "Oh, I'm having some sort of really dramatic escalation of this illness," because it wasn't that far outside of what I had been experiencing already. I was having a lot of inflammation and neurological symptoms already, so I was like, "Oh, this is just getting really, really bad all of a sudden." But then, after one of those full body seizure episodes, we reached out to the friend, the community member who had seemed to know about tick-borne illness and said, this thing is happening. I started Doxycycline at that point. It had probably been like a week before. And I was saying, "I was really expecting to start feeling better and I'm feeling so much worse." And she said, "You've got to stop taking the Doxycycline. You're having this Herxheimer reaction." And she gave me this detox protocol. And I did not want to stop taking the Doxycycline. I'm like, but I've finally found out what was wrong and I'm finally doing the thing to get better.

And so, we followed up with the nurse practitioner we were going to see who seemed to know about Lyme Disease. And then she also was like, "Yeah, you've got to stop taking the Doxycycline." So, I did and very quickly started to feel a lot better.

Marabai Rose: Even getting to the right dose on a medication treating Lyme Disease is challenging. And then not all of them work. So, you're sort of just like playing Russian roulette with these antibiotics. Like, is this going to work? Well, what if we put it in combination with this one, is that going to work? And it took us a long time to find the right combination of antibiotics.

Marabai Rose: See, I got sick again in October.

Alex Chambers: Of 2015?

Marabai Rose: 2015, yeah. And I started getting a little better in June. But it took me another couple of months just to start recovering my strength because I had been basically in bed for a long time.

Marabai Rose: It hit in November '14, and I was really probably feeling like significantly better October of '16.

Marabai Rose: I really see it as a systemic issue. I genuinely believe that the doctor, even the neurologist, that, you know, ignored the things that were in my chart and didn't listen to me. Like, I genuinely think he was trying to help, you know? I think our system has been infused with sexism and there is a very clear, you know, if you look back over time, you know, you look back, like, conversion disorder is a clear adaptation of hysteria and only women were diagnosed with this, right, with hysteria. And so, then, you go a step further back and it's, like, Charcot and it's even to the Greek philosophers who believed that the uterus was the source of illness.

Marabai Rose: So, there's just this, like, incredible lineage of sexism. And I think when things evolve, like racism and sexism evolves, sometimes they evolve into these forms that feel very subtle and hard to recognize when you're really in it. And so, I think that, you know, that was definitely at play, was there was just a sexist belief system that was already in place, and we were just acting that out. So, I think that's one thing. I think the other thing is that we've created a capitalist medical system that doesn't give doctors the time to really dig into things anymore, and so they are grasping for quick diagnoses. You do a whole bunch of testing on somebody and you don't have an answer, you feel really pressured to come up with one. You don't feel like you have any more time to give this.

Marabai Rose: And so, I think that's a problem as well that, you know, we're not giving our physicians enough time to deal with the more complicated cases. And the expectation that they're supposed to be seeing someone every 15 minutes is ridiculous. And I know a lot of physicians who are really deeply unhappy with that model of care.

Alex Chambers: Marabai tells the story of her illness, which is ongoing, in her book, "Holding Hope: One Family's Journey Through Lyme Disease and Psychosis." And yes, you heard that right, once Marabai started to get physically better, her husband's mental health fell apart. The account is fascinating and I recommend reading the whole book. There's so much more than we could fit in this episode. Marabai had been in remission for a couple of years when she told me this story. Along with the book, Marabai started a podcast called "Badass: Tales of Resilience." The podcast is on hold now because she's in the midst of a relapse. She said she's grateful that the relapse is happening just as the CDC is finally recognizing Chronic Lyme. And mainstream institutions like Johns Hopkins are doing important research that validate her experience and the experience of so many others.

Alex Chambers: Lyme is a complicated, and as Marabai puts it, weirdly controversial disease. It can be hard to diagnose and it's hard to treat. Poet, Daniel Lassell, has seen it first hand.

Daniel Lassell: Lyme, every ending begins with a field. Mom stems her fingers with cigarettes, says the smoke clears a pathway for her lungs. Breathing has become a sport for her. "Eight years," she says, and wipes her face, adjusts her tubing to undo a kink. How a tick has pierced my family with that bright red ring, set flames around our farmhouse. Blood, a whisper of bruises. My family for years thought doing began with seeing a culprit, those tiny eyes. And finally, when the doctors did name the cause, I rejoiced oddly, as if towering wheatgrass had somehow parted a doorway from the suffering temple. No, just another wall, and outside the tide creeps near. In the hospital again, mom speaks in an altered voice, an accent not her own.

Daniel Lassell: Must be the brain, must be a feasting. "We must keep her," the doctors say. Learning again how to perform the most eloquent of drugs, waves moving, claiming. Again, the coats, no food, screening, and looking at screens. See the infection, see it. It sloshes away, a ravenous puddle expanding, taking with it sand, grain, flesh, an ocean, quickly then another ocean. Oh, what ladder down is the body, this time respiratory failure. "Not the oxygen tank," mom says, "That's how they hook you." Her blanket smell of smoke, beyond her window there's a fire unattended.

Daniel Lassell: It doesn't end, this disease. When the meds reach their location, cells fester and spill through organs, another round. Mom gets dizzy from the leaving, the tick that's become her. Does a blood yoked animal ever sicken, tune to a pulsing and wonder if in blood it's not blood, but where the blood goes. Forlorn, the wicked ores become anchors.

Alex Chambers: That's from Daniel Lassell's book of poems, "Spit." Along with questions of health and illness and growing up amidst a declining marriage, the book has a whole lot of llamas.

Alex Chambers: That's it for the show. You've been listening to Inner States from WFIU in Bloomington, Indiana. If you have a story for us or you've got some sound we should hear, let us know at States. And hey, if you like the show, you can review and rate us on Apple or Spotify, and what's even more fun than that is telling a friend. All right, we've got your quick moment of slow radio coming up. But first, the credits. The Inner States team is me, Alex Chambers with Violet Baron, Jillian Blackburn, Avi Forrest and Jay Upshaw. Our executive producer is Eric Bolstridge. Thanks to LuAnn Johnson of WFIU's Poet's Weave for the recording of Daniel Lassell's poem. Our theme song is by Amy Oelsner and Justin Vollmar. Additional music in this episode from Ramón Monrás-Sender, Backward Collective and the artists at Universal Production Music. Special thanks this week to Marabai Rose and Daniel Lassell. All right, time for some found sound.

Alex Chambers: That was raking leaves recorded by Patsy Rahn. Until next week, I'm Alex Chambers. Thanks, as always, for listening.

Marabai Rose

Author Marabai Rose (Courtesy of Marabai Rose)

Marabai Rose was 38 in 2014. She was married, with two young children, she was healthy, and had a job she liked. Then a mysterious illness came over her. She was overwhelmingly fatigued. Soon, her legs could barely carry her through the house. And then, one day, a paralysis came over her. She could feel her breath getting more and more shallow. As she recovered, her attendants celebrated it as something close to a miracle. But she wasn’t really better, and doctors started to dismiss her claims – in ways that resonate with a long history of women’s health issues being dismissed. Marabai tells her story, along with the process of finally diagnosing the problem, and the ongoing challenges of finding the right care.

Marabai wrote about her illness and what unfolded afterward in her book, Holding Hope: One Family’s Odyssey Through Lyme Disease and Psychosis. She also has a podcast inspired by the experience: Badass: Tales of Resilience.

We close with a poem by Daniel Lassell, from his book Spit.


The Inner States team is me, Alex Chambers, with Violet Baron, Jillian Blackburn, Avi Forrest, and Jay Upshaw. Our executive producer is Eric Bolstridge. Thanks to LuAnn Johnson of WFIU’s Poets Weave for the recording of Daniel Lassell’s poem.

Our theme song is by Amy Oelsner and Justin Vollmar. Additional music this week from Ramón Monrás-Sender, Backward Collective, and the artists at Universal Production Music.

Special thanks this week to Marabai Rose and Daniel Lassell.

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