For many sick people, getting even a temporary break from pain sounds too good to be true. But this week we hear from three people who did get a reprieve from a chronic disease, sometimes in very unconventional ways.
One of our listeners, Allison, struggled with severe, undiagnosed depression in her twenties. She hooked up with a no-good boyfriend who got her into a dangerous habit: heroin. Today, she’s 57 and she knows the guy and the drugs were trouble. But she also says heroin had a surprising side effect.
Sara Benincasa is a stand-up comedian who grapples with agoraphobia, a fear of crowds and busy places. But during a trip to the Netherlands she encountered a place that changed how she faces this fear, and helped her see what life could look like when she wasn’t scared to leave the house.
Hanna wrote into us with a really intimate story about life with ulcerative colitis, an incurable disease with some difficult side effects. When traditional treatments failed, she and her mom tried an experiment that changed how Hanna thinks about her body and her daily life.
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Mary Harris: Before we get started, just a quick warning here at the top: We’re gonna be talking about some pretty heavy topics in graphic detail. So we’re gonna be using first names only in some cases -- and kids, better to sit this one out.
MH: So a while back, we asked you guys to tell us about the weird experiments you’ve tried to get healthy and this one listener’s story really caught our attention.
Allison I think when I started doing heroin, it really sorta helped me get my shit together.
MH: Yeah, heroin. After we heard from our listener Allison, one of our producers gave her a call.
Julia Longoria: Can you walk me up to that decision to take heroin? Like how did you get there?
A: Sure how much time do you have?
MH: Allison’s 57 now. When she was in her twenties, she had a severe, undiagnosed case of depression.
Allison: I didn’t know I was depressed. I just thought I was a shitty, lazy person who felt like crap all the time.
MH: She says it’s difficult to describe, but it’s sort of like life was this black hole for most of her teens. She couldn’t get out bed most days. Until… Heroin. It was a solution she kind of stumbled upon through a college sweetheart.
A: It was just one of those like typical, two people who don't belong together yet somehow can't get away from each other sort of relationships.
MH: So maybe he wasn’t so sweet.
A: He was a sometimes thief. Sometimes hustler. Sometimes drug dealer.
MH: When they graduated Allison tried to get away from this guy, she moved to New Jersey to find work but,
A: He followed me. Ended up living with me.
MH: He didn’t have a real job but every week, he’d get up and take the train into the city.
A; And you could go to the Lower East Side and buy heroin really cheaply.
MH: He used Allison’s money to buy it.
A: There’s just a point where I was like well fuck this well If I'm buying this shit, I’ll be damned if I'm not going to do some.
MH: And suddenly, Allison felt this fog that she didn’t even know was there begin to dissipate.
A: It puts extra dopamine in your brain. You know? It turned me into superwoman. I could, I could do anything. I was great at my job and I was doing art on the side and I had energy for the first time in I don’t know how long and it almost gave me the strength to push him out of my life.
MH: She did dump the guy but she stayed on the drugs.
A: It seemed to solve all of my problems. Um until it didn’t. You know until I started feeling crappy about being a drug addict.
MH: I’m Mary Harris. This is Only Human. Today, we’re bringing you stories of strange escapes from disease. Stories from people whose bodies give them a break from pain or depression or chronic illness. And getting that glimpse, just a glimpse, of some other way to live, it changes everything. Our producer Julia has the rest of Allison’s story.
JL: So Allison told me Heroin was this three year break from a very long history of depression.
JL: If you were going to tell the story of your relationship with depression, where would it start?
A: Well it would probably start with the fact I was, uh, sexually molested by three different family members by the time I was fifteen.
JL: The first time it was her sister’s boyfriend.
A: He you know told me I was pretty. I was just a sucker for the attention.
JL: Then, her cousin’s husband.
A: I think I started to get the idea well I guess this is what I'm here for.
JL: At first, these encounters were sporadic one or two-time things.
A: But with my DAD, it was, you know, a pretty regular basis.
JL: And he would ask you to?
A: He would just come to my room at night. And, you know, whatever damage was done to me in my early life, it so messed with my head I believe that it actually affected my brain chemistry.
JL: She even considered suicide.
A: You know I don’t think I ever really tried.
JL: You say really tried. Was there something that was just a little bit trying?
A: (Laughs.) Um. Well, you know I sat on the edge of bed with a gun in my mouth. But I didn’t pull the trigger. I mean I was despairing at, you know, so many points of my life prior to heroin.
JL: And the thing is, she thought living in this black hole -- not being able to get out of bed, not feeling the will to do anything was just the way things were until she took a hit of her boyfriend’s heroin in that fit of frustration.
A: It’s like every time I took Heroin I felt awake. Just made me feel as if I could get up and do something.
JL: She had this overwhelming rush of energy. She bolted out of bed in the morning, she wanted to make art, she was excited about work and she found herself wanting to do even these simple human things that she’d never really done before.
A: So like, oh my god, I wanna go out for a walk. I wanna draw a picture.
JL: At the height of it, she spending almost at $100 a week on heroin, hitting up almost every day.
A: After the physical addiction kicked in, it was telling me what to do and I didn’t like it. I mean I knew it, it couldn’t go on forever. So at some point I, I just said you know, that’s it. I want to be better. I want to find another way to be better.
JL: Now Allison’s case is sort of the exception because she got help before she hit rock bottom. She checked herself into rehab and got herself a psychiatrist. And after a long, long struggle, she found a way to find joy again without heroin. It was more muted, maybe than the heroin high, but there were things she’d forgotten she’d loved.
A: I remember putting on a record - a vinyl record (laughs) - and going, oh my god music. I forgot. Like I forgot how much I love music.
JL: And there were other little things she reconnected with, like reading a book or going for a run that made her think,
A: Oh, you can do shit. Like you are sort of the master of your own destiny. I mean I’m still doing it assisted. You know like, air quotes here which you can’t see. You know because i’m still on drugs.
JL: That is legal drugs. Antidepressants.
A: I mean now is not as fun, but there’s a lot more satisfaction in the, the tiny little victories I have here and there. It’s easy to look back on those days I was doing heroin and since I didn’t really do any lasting physical damage to myself. You know it’s like, have you ever really felt that good again? Well no, oh you haven’t.
JL: But, but these victories feel more like yours than the ones on heroin?
A: Yeah. Yeah, they do.
JL: So yeah. It’s sort of like living somewhere for awhile that’s not your home and being like, this is great but it feels too much like vacation. Not like real life.
A: Wow that’s a really great way to put it. Absolutely. I feel more me now.
MH: Even though Allison's vacation didn't last, it did help her, in this strange way... like she said, she got her shit together. It was the first step to recovery.
But the next vacation we'll hear about, was the calm before a pretty miserable storm. This story is from a comedian named Sara Benincasa. She wrote a memoir called “Agorafabulous” about the anxiety she’s had since she was a kid.
Sara Benincasa: From a literal perspective agoraphobia comes from phobia or fear and agora which means marketplace. So quite literally I have a fear of the mall which is tragic for someone raised in New Jersey. It's really limiting socially. In actuality I never had a fear of the mall. The mall was perhaps the only place I didn't have a fear of because it felt like home, just the smell of something disgusting from Bath and Body Works combined with a Sbarro's pizza or an Auntie Anne's pretzel was like home to me really emotionally, physically, spiritually.
Imagine that you went to a place, a grocery store say, and every time you went to that grocery store you got kicked in the stomach. Eventually you would find a different grocery store and then imagine that it kept happening in all the grocery stores you went to so you just stopped going to grocery stores. And then you stopped leaving your neighborhood because it happened every time you left your neighborhood. And then you stopped leaving your front porch because it happened every time you left your front porch and eventually you paint yourself into a corner. For me the kick in the gut was a panic attack. It was like getting kicked in the gut everywhere that I went eventually. And so I thought wow I don't like this feeling, I don't like this panic. I think I'll just stay home.
A panic attack is a full body experience. As an adult, I describe it to other adults as the exact inverse of an orgasm. So it feels awful. It feels as awful as that feels good. And I found certain things that comforted me. I had this stuffed giraffe named Mary. She would come with me places. Usually tucked away in a purse. I would listen to certain music that I found really soothing over and over again. Enya was a constant throughout the nineties. Repetition is really soothing a lot of times for people with anxiety disorders, rituals things like that. So I was finding ways to manage it.
MH: Sara kept having these panic attacks as a teenage but she pushed herself. She went to college in Boston. And,
SB: When I was nineteen I thought, ok, I have this well enough in check. I'm ready now, I'm going to go on this study abroad trip. I can do this, my best friends will be there. I can do this. I can do this. I got on the plane with all these friends from Emerson College. Emerson College owns a castle in the Netherlands.
As we drove up to the castle in this little country town there was a tall tower that had this cascade of ivy and it appeared that out of the tower window was this streak of red, and it was a streak of, of red Ivy against the green, and they told us that that's the blood of the prisoners who were executed--this was a prison tower. And in my mind, I was like that’s so cool.
MH: Something happened at the Castle. Sara still can’t really put her finger on what. But being immersed in this strange, mystical place had a real physical effect on her body.
SB: I felt a respect for the enormity of what had taken place. These stories of horrors past. They had to do with real problems. In my mind, my problems weren't real problems because they weren't life or death. I had this brain that didn’t work quite right and that made me feel things sometimes that were out of proportion to reality.
At the Castle, from September, October, November, December, I didn't have one panic attack. It was amazing. I began to stop expecting them after the first couple of months. I started to have confidence in myself. I could go on trains with friends or by myself. I could be among strangers in a city where I didn't speak the language and I could feel good and safe. I was so happy there.
MH: Those four months at The Castle -- traveling around the countryside, living totally free of panic -- made Sara feel like she was cured for good.
SB: In January, I resumed my studies at Emerson College in Boston. I got increasingly depressed as I had an increasing amount of panic attacks and then agoraphobia kicked in and so I started to actively restrict where I went. I had fewer and fewer reasons to leave the house and then by December, I was was not going to class. I was not eating. I was sleeping as much as I could, more and more all the time. If I could avoid leaving my bed I would. It was not until the last couple of weeks that I stopped using the bathroom to urinate. I would still use it to defecate mostly. But that was like the last stand. I was like, I will shit in this toilet. I would urinate in mason jars which is, actually a really hipster method of inappropriate elimination now that I think about it.
MH: Sitting there at rock bottom in her dorm room, Sara didn’t want to think about the Castle.
SB: It was too painful to think about a time when I had been so happy. It was a reprieve from who I was meant to be which was the scared, trembling, cowering mess.
MH: But the Castle would come to mean something else, once she found a way to crawl out of that hole.
SB: My friends, Alex and Catherine, called my parents and told them I was suicidal. And my parents called me out of the blue, both of them on different extensions in the home on the landline. Parents don't typically call you in such a dramatic fashion you know in the middle of the night, but I was so out of it. And they asked if I would like them to come and get me and I said, ‘yes,’ and they said, ‘When is it ok? You know if your mother works,’ she was a school librarian, ‘Is it ok if she works tomorrow and then drives up after work?’ And I looked over my stained sweatpants and spindly legs and I looked at this bowl of pee that had been sitting there for three days or more and I smelled that acrid ammonia smell and I said, ‘I think I need you to come get me right now.’
And then I started seeing a psychiatrist and at first I could hardly leave the house but my parents would help me and we would go together in the car and then I would go in talk to the shrink and come out and over the next eight months, my life changed again in a beautiful way. I was pretty soon put on the right medication for me and within about two weeks of that happening, my world opened up so much. It didn't make me happy or anything like that and it didn't take away all my fears but it made me able to function in a new way. It is extraordinarily empowering to realize that you can have a reprieve from your mental stuff. At the castle it happened by accident in a sense. I didn't know it was going to happen.
Now I'm empowered with the tools to help make that happen. So relaxation and happiness are not just things that are visited upon me magically, that I pray for that I wait for. It's something that I work for and that I choose to create.
MH: Sara Benincasa’s new book is “Real Artists Have Day Jobs.” We’ve got one more vacation for you after the break.
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MH: We’re back with one final vacation from disease. We’ve heard from a couple of people who got a break from their illnesses almost by accident. This last story is about a woman who went to extremes to get just a brief reprieve from a miserable disease. It comes from our listener Hanna.
Hanna: I’ve been listening to your show since it started and I guess I was kind of like waiting for someone to bring this up and no one had yet and I was like you know why, why not me? Why should I not do this? Like I haven't really talked to my friends and family about this and so I just need to kind of break the ice.
MH: And she did. Even though Hanna didn’t think she was the kind of person who would ever talk about what she’s going through.
H: I was one of those girls that said like, ‘oh I don't I don't poop. I don't have bowel movements. Like I don't fart.’ I was very (laughs) you know cavalier about it.
MH: I think we’ve all been this kind of girl. True story: I’ve been pregnant twice and, both times, the thing that horrified me the most about the whole experience is that some huge percentage of women poop while giving birth.
Something about being that exposed really upset me. And it upset me so much that I basically resolved never to do it. So I understand what a big deal it is for someone like Hanna write to us about her condition.
Her story starts about 3 years ago.
H: I was actually in Brazil at the time living with my now husband, then boyfriend.
MH: She was starting a job as a teacher at the American school in Rio.
H: And right after I got to Brazil, I started having gastrointestinal issues.
MH: First she had sharp stomach pains. Needing to go to the bathroom. Which is hard to do when you’re in front of the classroom all day.
H: I was a teacher, like you have to be on all the time.
MH: But then there was bleeding. A lot of bleeding.
H: Yeah like the toilet bowl was red and I was pretty scared.
MH: So she decided to go to the doctor.
H: And so I went to the emergency room, I was like where else am I going to go. And then this really cute young doctor was like, ‘you probably have hemorrhoids.’ So we had to like you know do that exam (laughs).
MH: So you meet this really cute doctor and you’re like, ‘yeah, check out my..
MH: My ass.
H: Yes exactly. And it was just, it was kind of humiliating.
MH: But for Hanna, something was wrong.
H: The diagnosis was in Portuguese so I was like, ‘what is (unintelligible)?’Like I had no idea what it was.
MH: The translation is ulcerative colitis. Which literally means she gets ulcers inside her colon. But it also causes lots of other complications.
H: So I went home and Googled it and it sounded really scary. Um there's no cure for it. And I remember reading, um, on Web MD people sort of colitis oftentimes like carry an extra pair of underwear or like toilet paper with them in their purse wherever they go and they know where the bathrooms are and I was like, ‘what? why would they do that? Like I don't understand.’ And then months later when this first happened to me I was like, ‘oh shit that’s why.’
MH: Well tell me about the first time that you realized this was going to totally change the way you live.
H: Um, I was going home for the summer um and I was going to a comedy show at Upright Citizens Brigade with a friend. And in the intermission I was like, ‘oh my God, I have to use the restroom right now.’ And it's like this small cramped building and, um, there's like one stall and I'm waiting in line for it like, “oh my God, oh my God, I have to go bathroom.’ And all of a sudden it was like, ‘ok, I cannot hold it.” And I like ran out into the street and I was just like shit. Like what is happening. Like I literally just had an accident and I'm an adult woman like I can hold it and that just happened
MH: What do you even do?
H: Right. Yeah. That's the question that I like ask myself. I think I ran to some like Starbucks or something and went in the bathroom and like threw some clothes away. Cause I just didn't want to deal with it. Like it's so hard to talk about that I didn't tell anyone. Um it’s just, it’s gross.
MH: Some people with ulcerative colitis get lucky and don’t have symptoms every day. But Hanna says she has to run to the bathroom every hour most mornings. A few months after her accident in New York, she quit that teaching job in Brazil. She told her boyfriend she was too fatigued and in pain. But she kept the extent of her symptoms a secret. She left him in South America, and moved to her mom’s house, in Oregon, to try to get better -- and to plan her wedding.
Opening up about her condition has been hard. When she tried to tell a friend about it, it didn't go so well.
H: So, um, it was at my rehearsal dinner and I was seeing a friend there that I hadn't seen for a few years. I think it came up because I wasn't drinking alcohol, I was drinking soda. And she figured, ‘oh you're probably pregnant,’ and I was like, ‘no actually not, let me tell you.’ So I said, ‘yeah, when I was in Brazil I was diagnosed with ulcerative colitis and I can't drink alcohol.’ And she looked at me with this just kind of disgusted face and said, ‘oh is that like messy?’ And I just, my heart just sank. I was so embarrassed. Um, it just made me realize that like it's not a safe thing to talk about.
MH: After the wedding, Hanna's husband went back to work in Brazil. But Hanna stayed behind, determined to get well.
MH: When you wrote to us about this one time that you got relief, with a little help from your mom. What happened?
H: (laughs) Yes. So after I didn't respond to any of the medications I got kind of desperate and I was looking up alternative therapies which for a disease like ulcerative colitis, there are so many alternative therapies and this one seems really out there. Um, but nothing's as bad as the symptoms I have. And it was fecal microbiota transplantation, F.M.T. Um sounds crazy. Um the doctor is allowed to give you advice on it but he can't perform it himself because it's, um, controversial how effective it is for ulcerative colitis.
MH: The theory behind these transplants is that you can make sick people feel better by filling their digestive tract with bacteria from a healthy person: you literally transplant poop. It’s approved for some conditions, but not for ulcerative colitis patients.
So Hanna decided to do the transplant herself. But she needed a donor. So she asked her mom.
H: I couldn’t imagine asking anyone else. (Laugh).
MH: Hanna’s mom went through some tests to make sure she had a healthy gut. And then, they did the rest on their own.
H: We went out and got the necessary tools. We got a blender, cheap crappy blender, and, um, like a spatula and a strainer and enema bottles and it was like D.I.Y. F.M.T. So every morning my mom would poop in a bag and leave it in the fridge and, um, I would get it out of the fridge when I woke up and blend it with distilled water in a blender, strain it into enema bottles and give myself an enema. And then lay on my back with my feet in the air for like four hours. It's supposed to be minimum four hours that you do it. So, um, I’d watch a lot of bad T.V. and just (laugh) wait.
MH: It took about two weeks for it to really start working.
H: I was literally in remission, like I didn't have any symptoms anymore and it was magical. I just felt so grateful. I was like, ‘why isn't this available to everyone? This should be you know a first line treatment.’
MH: She felt so good that she bought a one-way planet ticket to move back with her husband.
H: I went back to Brazil. I started to just like act like a healthy person and I'm like busy all the time and I'm on the go. And I have all this space inside my life to be with people and to um (laugh). It's funny, I think I start, I start to take it for granted really quickly and I just felt like a huge relief that I could go back and live normally. Like I had been on, on, um, sick leave at that point like long term sick leave. And I just was ready for life to go back to normal so I was full force like, you know, ready to live life again. And I would say two or three days after I got there, I relapsed immediately /
And so I gave it three months and at that point I told my husband like, ‘I just, I can't do this anymore. Like I need to go home and I need to get better.’
MH: So she went back to her mom’s house in Oregon.
H: And I figured at that point that FMT would work again.
MH: And she tried the same procedure over and over again, every day, for a few more months.
H: And, and it didn't work. And I just like, I just kept having the same symptoms.
MH: Hanna has stayed in Oregon ever since. She works part-time job as a yoga instructor.
H: I think that I think that as awful as this past, gosh, year and a half has been since that little break, it's like I keep being reminded that I have more to learn from this. Because whenever I have a little break, like when I have symptomatic relief and a period of remission, I tended to just go back to how I was living before, which I was kind of type A and really high stress. And I think I've been forced to live differently in the last couple years.
MH: Well I guess I wonder, do you feel like the person who's rushing around and going really fast, that type A person, is that the real you? Or is it now because of this, the real you is something different?
H: It's different. It's uncovered a part of me that I didn't know was there and required me to move more slowly and to, um, be more vulnerable.
MH: For years Hanna could avoid talking about all this even with her husband, they were long distance. But then, he quit his job in Brazil and moved in with Hanna and her mom.
MH: When did you tell him?
H: Um. I, I really didn't have a frank conversation with him about it until last summer.
MH: What was that conversation like?
H: He was basically asking like, ‘have you ever had an accident before? Has this ever happened to you where you couldn't make it to the bathroom?’ Because he'd seen me like running to the bathroom before, he knew that happened, but he never knew that I didn't make it there. Um, which to me it's like, ‘yeah, of course sometimes that happens and it sucks.’ But to him he'd never heard about that or you know I’d never talked to him about it. And I said, ‘yeah, yeah of course it's happened before.’ And, um, I just looked away, I was really ashamed and he was like, ‘well what, what do you do in those situations?’ And I was like, ‘you just deal with it. Like it's disgusting and I throw a lot of underwear away and sometimes I'm unprepared and have to go home. But that's, you know, that's one of the reasons why it's hard for me to be social, to be around other people because this happens sometimes and I don't know when it's going to happen. It's terrifying.
And at this point I was crying and he was really um, this has brought us so much closer, Um because he was. It was like he, it was almost this sounds, i don’t know if this sounds right. It brought us closer together like, in the fact that like we wanted to be intimate again which had been really hard for me for a while. Because I had been so sick and ‘cause I had felt distant from him. And it was like this um, yeah like sudden chemistry sort of returned between us, which was really amazing to see and just shocking for me because I kind of expected talking to someone about this it's going to be awful they're going to look at me in a different way and he didn't. It was like he saw that vulnerability in me and it was a deeper connection.
So that's in some way what's given me the confidence to do this because I feel like vulnerability in this area is so rare and it can't do anything but good.
MH: When you think back on that vacation, that one week break you had, what does it mean to you?
H: Um, it means that it can happen again. I've, I've seen my body heal itself and, um, I have hope that. Like I know it will go away at some point. Um, it’s funny cause I keep thinking like, ‘how do I still think that, it’s been so long.’ And there are some times when I'm like, I've like changed my life in so many ways and I'm really happy in a lot of ways, happier than I was before, on a deeper level. As someone who like wouldn't talk to her husband about pooping to going like to here. On a strange level I’m happy I have this because it’s led me here which I would have never gotten here in any other way.
MH: Only Human is a production of WNYC Studios. This episode was produced by Julia Longoria. Our team includes Amanda Aronczyk, Elaine Chen, Paige Cowett, Kenny Malone, Fred Mogul, Ankita Rao, Lisa Rapaport and Jillian Weinberger. Our technical director is Cayce Means. Our executive producer is Leital Molad. Thanks to Danielle Fox and Stephanie Daniel.
Jim Schachter is the Vice President of news for WNYC.
I’m Mary Harris. Talk to you next week.