This week we're revisiting the story of a woman making a very difficult decision.
Jaime Lowe started taking lithium when she was 17, after a manic episode landed her in a psychiatric ward. She was diagnosed with bipolar disorder,and for more than 20 years, the drug has been her near-constant companion. She’s taken it for so long that she can’t say for sure where she ends and lithium begins.
“It’s hard to know if lithium is actually -- like, if it dampens my personality, or if it normalizes my personality, or if it allows me to just sort of be who I am,” she says.
Jaime tried to go off of lithium only once, in her mid-20s, and the result was not good. She developed grand delusions. She would start an organization to defend the First Amendment. She would marry a friend she only recently met. She would change the world. She sent wild emails to would-be employers, adorned herself with glitter and stacks of necklaces, and barely slept.
When she finally pulled herself back together again, Jaime made a resolution. She’d stick with lithium. And that worked -- until she learned last year that her long-term lithium use has taken a physical toll. It’s damaged her kidneys. Now, she faces a choice that’s not much of choice at all: an eventual kidney transplant, or going off the drug that has kept her sane all these years.
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JL: I’m, you know, kind of proud, I guess? There’s a little bit of pride that at some point I got to shed the shell of reality and indulge bigger ideas, even if they never happened or could happen.
Jaime Lowe has a different relationship with reality than most of us do. Because a few times in her life, she’s been able to leave it behind. She has bipolar disorder, and it can make her an extreme and electric version of herself. And that’s exhilarating -- but it’s also destructive. She takes medication to keep herself in check. But as you’ll hear -- that has its own consequences.
I’m Mary Harris, and this is Only Human. The show from WNYC about the complicated ways our bodies work -- and about the times they fail us.
This all started for Jaime when she was pretty young -- 17, and a high school kid in L.A.
JL: It feels sudden in retrospect, because the diagnosis was such a big thing and it was coupled with a hospitalization...
It was her senior year when she was admitted to a psychiatric hospital. She thought the hospital was a death camp, and that the end of the world was coming. And she thought she was the only one who could stop it. Her doctors gave her a drug to treat mania.
MH: What happened when you started taking lithium?
JL: I felt – um, I mean, I started sleeping again. I started eating. I was a little bit more grounded, and I was able to function in a way that I couldn’t before.
MH: Did that feel good?
JL: I mean, nothing felt good, because I had just come out of being hospitalized for a month, missing senior year… It’s hard to know if lithium is actually… if it dampens my personality or if it normalizes my personality, or if it allows me to just sort of be who I am. I don’t really know.
Lithium has played a big role in Jaime’s life. She wrote about it in the New York Times Magazine last summer. She’s 39 now, and there’s only been one time since that hospitalization in high school when she wasn’t taking lithium. It was when she was in her mid-twenties. She’d finished college and moved to New York. And she started to get work, writing about music. She thought -- maybe it’s time. Maybe I just don’t need lithium anymore.
JL: You know I talked with my psychiatrist, and the thought was that it's possible that I wasn't gonna have another manic episode. I think I wanted to know what it was like not to be on lithium too. I wanted to feel like I could exist without it. And so I thought I would try it. Um, which was, in retrospect, risky. And it didn't necessarily pay off.
MH: So what happened?
JL: First it was kind of subtle signs of things. I mean, the thing about bipolar disorder is that when it’s really blossoming it’s just a slight hyperbolic version of your normal self. And so all the things I was doing could have been a manic episode, but they also could have been totally par for the course for me. Because this is who I am and they’re all extensions of who I am. So like I started doing like yoga intensely. And I would stand on my head every morning and light candles. And I pretty much started turning down a lot of job opportunities. I had interviews that I was like, “This is not what I want to do. I want to change the world.” I want -- I got -- I became like a huge crusader for the First Amendment and thought I was going to start a nonprofit organization. So there were a few things that were bigger than I was operating before.
MH: So when did you know or when did your family or friends know that this wasn't just you. This was something bigger?
JL: Well my apartment burned down. And so, part of one of these yoga sessions involving candles probably – they never actually linked it to the candle, but probably it was the cause. You know, I started out the morning doing that: lighting candles, doing yoga, standing on my head. And went to a job interview, which I promptly rejected even though I wasn't really even offered it. But I gave the guy like some granola and…
MH: Hold it. You gave him granola?
JL: Yeah, like out of my pocket… I had some granola that I’d made and was like, “Here you go, Andy… I hope you like it.” And he was like, “Uh… What is this…” (laughs) And I walked home and there were like all these fire engines there, and my apartment was burnt out. At that point, you know, I had been sort of manic but not really in an identifiable way. But from that point on it was like my reaction to all of that was extreme.
MH: So describe how you reacted.
JL: Uh, how much time do you have? (Laughs) Just kidding. Uh, I was enamored with this guy who lived downstairs from me who I had met like months earlier. We became very close very quickly, and I was walking around in kind of burnt clothing, and I instantly bought like seven hundred dollars worth of squash which I had delivered to my neighbor's apartment. You know, this was in the first couple days, and then…
MH: You actually describe it really well in the New York Times magazine article. I wonder if you could read just that section.
JL: Sure, yeah. So this is actually when I went back to New York. I had gone to L.A. and then
MH: after the apartment burned down you went back to L.A…
JL: I went the L.A. for I think like a week or two weeks and it was right before Valentine's Day and I was like I have to be in New York to see Mike-- this person who like worked on the floor below -- It was kumquat season and I wanted to be back in New York with Mike, a crush I had met a month earlier. He worked in a startup on the floor below my apartment. In the weeks after the fire he followed me around with a video camera, mostly because I told him to. A few years ago he sent me a few scenes on a V.H.S. tape he had stashed away in his parents lake house. I watched it recently. I looked pretty and young and magnetic and so crazy. My face was less creased with worry. My hair was coiffed in a deep red Afro, framing perfectly shaped eyebrows. I was sporting my trademark manic style: about a hundred sparkling necklaces, fourteen layers of clothing in every clashing pattern possible, thick makeup, and a pack of Fantasia cigarettes. My voice was hoarse and slow like a 40s-era lounge singer. The next scene on the tape is me showing the camera different album covers and singing songs from each album. I pause at Sweeney Todd and say, “Oh, this one's about eating people. So, that’s cool.” Mike, off camera, peppers me with questions, asking me to hold the albums higher or lower or to the side. The next morning I set up the camera so the lenses point of view shows what I've made. Kumquat and avocado salad, cubed power bars and a glass of wine. I videotape Mike waking up. He negotiates for more sleeping time. I clearly hadn't slept at all and was now wearing a silver flecked red bra and a gold skirt. He finally acknowledges me by eating a powerbar. I say baruch atah adonai over the cup of wine, borrowing from the Hebrew prayer. I whisper it as if my voice is a direct line to God. Mike asked me what I'm going to do today. Today I'm going to contact M.T.V. to debate Gore, Bush or Tipper Gore. I hope it's Tipper. I have a lot of work to do today. Pause. I have to change the world.
MH: Is it hard to watch those recordings of yourself?
JL: Yes. It was very hard. And I did it once so I could take notes... and I really… I don't think I could watch it a lot. But it also feels... because it's recorded, like it's a different person even though I remember it happening. It's just kind of like sometimes when I look at pictures of myself it's like this disembodied experience. And it's kind of like that.
MH: So how well do you remember what you're watching?
JL: I totally remember it. I remember all of it. The thing about mania and depression is that you're there throughout it, you know? You're interacting with people and you're not not remembering.
MH: Does it feel like you?
JL: Define you. I mean, in each moment we change, and we react differently depending on the circumstances. And I think that it feels like a version of me and it's certainly part of me. But it's not the choices I would make, you know, if I were me on lithium.
MH: You're really funny when you write about this.
JL: Thank you. I'm glad that that comes off.
MH: And it’s a tragic scene.
JL: Yeah. But it's also funny. I mean it is. It's so stupid funny. There are things that happen and that you're like what? Like how is that even real or possible. And that's the beauty of it. There’s a lot of bad that goes with being manic or depressed, but then there's some stuff that's really exciting and good and expansive and... I wouldn't change it.
MH: So how did you make the decision to go back on lithium?
JL: That was not something that I was necessarily agreeable to. (laughs) Uh… My mom, she came out. And then while she was here she was trying to get me back onto lithium. But I was cheeking the medication and…
MH: You were cheeking it. Putting it in your cheek and then…
JL: like she would say like, “did you take?” and I would open my mouth, lift up my tongue. But it was actually in my cheek. And so it would look like I took it, and then I would spit it out and not take it. Very crafty. Manic people are very crafty. But after a while she sort of -- either I was too proud and told her of my great achievement of cheeking the medication or she figured it out. And, uh, then she started checking more crevices of my mouth. So I eventually started taking that and antipsychotics, and I was back in L.A. riding it out. I mean it really was like not all gone and I was, you know, taking out all these canvases I had painted and like repainting them furiously, and I was still walking around with, you know, tons of green eyeshadow all over my face. Nobody really could handle me. And so at some point my mom hired a nurse to help. I basically had a babysitter as a 25 year old. And she would like braid my hair into cornrows and take me to 99 cent stores. And she was very calm and patient and eventually the medications started working, and then I had to deal with all of the destruction.
Coming up, Jaime recovers. But there’s just one problem. The drug she relies on to keep her mind stable is making her body sick.
Only Human will be back in a minute.
A couple of weeks ago we talked with Dr. Peter Grinspoon about his addiction oto painkillers. He was a practicing physician when he got caught writing bogus prescriptions to feed his own drug habit. He went to rehab and his licence was suspended for three years. After that he returned to work as a doctor with supervision. He never went to jail. We heard from a few listeners who thought that he got off pretty easy. You pointed how Grinspoon, a white doctor was treated fro his drug crimes compared to African Americans. Jason Minnis who grew up in Florida and lives in Brooklyn said: Grinspoon’s story made him furious about this double standard.
JM: When I listened to that episode, I was like sitting there like, are you kidding me? Are you kidding me? Because my experience and experience with people in the various African American communities that I’ve lived in from my hometown, West Baltimore to Bed Stuy to East New York this guy’s experience is completely different. He didn’t even loose his medical license. He went to rehab and then like, you know, he was like able to pull his life together. Like, oh, I still practice medicine in an inner city community. Where in a lot of black communities you get that one strike and you can’t get a job and you’re pretty much, your life is ruined.
MH: When I spoke to Peter Grinspoon, he said the emphasis should be on rehab, not punishment.
PG: I think it should be less punitive for everybody. I mean, it depend on whether you think of addiction as a disease or some kind of moral failing. And I think there’s being like, a big shift right now, in kind of society’s perception of addiction. And it’s shifting from something that we punish and incarcerate to something that we empathize with and treat. So, I think this happening, and I was just trying to make the point that with physicians it’s particularly dangerous, if there’s a punitive response. Because they won’t get help. And a worst case scenario for patient safety is a physician who is addicted who’s afraid to get help.
MH: Do you have thoughts on this story? Tell us on Facebook or Twitter, we’re @OnlyHuman.
You’re listening to Only Human. I’m Mary Harris. And I’m talking to Jaime Lowe.
She has bipolar disorder, and she had a bad manic episode in her 20s, after she stopped taking lithium. By the end of it, she had no apartment and no job. Mike, the guy she thought was her boyfriend, wasn’t her boyfriend anymore. She had to start adult life all over again. She decided to stick to a regimen. Lithium, three capsules a day. And little by little, she put herself back together.
MH: Tell me about your life now.
JL: My life is good. We’re fostering a dog right now and that's less good cause she's crazy. Like, I think that we might run our course at this point, although the group sent me another picture of little beagle-looking puppies and I almost lost it.
MH: But you're working the Times Magazine.
MH: You have a serious boyfriend.
MH: You're living together?
JL: Yeah. I know, that's like a total miracle to me. I can't believe that.
MH: Why a miracle?
JL: I think relationships are hard and I think that they're... they're really hard to get right. And when it feels right and it's working and continues to work, I think that's miraculous. I think that's one of the few things that I can point to as inexplicable and amazing.
MH: So at what point did you tell him about the bipolar disorder?
JL: Probably the first time I met him. I'm not shy about talking about it. And the first time we met it we had a really long like five hour conversation. And I felt very comfortable with him. And so, we talked about a lot of things and that was one of them.
So Jaime has things worked out: a relationship, a job. But lately she’s been thinking a lot about that last manic episode, when she was in her 20s. Pretty soon she has to stop taking lithium again. She found out after a visit to her doctor.
I had gone to him because I thought I had a rash. And he basically was like I don’t care about your rash. I care about the fact that you’re gonna just explode right here. And like, he was very worried.
Her blood pressure was dangerously high. The doctor sent her to the emergency room, where tests showed that her kidneys were damaged. Jaime knew this was a danger of long-term lithium use. For years, she’s had regular tests to monitor her kidney function. But she didn’t expect this.
MH: So who is the first person who said to you, you know, “we may need to talk about the lithium”?
JL: It was the same primary physician actually referred me to a nephrologist in his practice.
That’s a kidney specialist.
And this nephrologist said you have to go off lithium and I was taken aback and just felt like she didn't quite know what she was talking about. So I talked to my psychiatrist who then found a nephrologist who specialized in these cases. And I went to her and she said, “You know, you have these two choices: you can stay on lithium and you will get dialysis and a transplant. Or, you switch now to a different medication.”
MH: What are you feeling in that moment?
JL: Bad. I mean, really bad. It's a terrible choice. I don't want to have to face an episode, which would be the possibility of switching medication. You know, If it doesn't work, the only way to know that it doesn't work is if I have an episode. And dialysis is horrifying to me. Like, it works for people who absolutely need it and it's like deeply important. But sitting and getting my blood cleansed for three hours every other day, and then having to have a major organ transplant. This is not…not really good choices.
MH: How do you deal with knowing this is coming?
JL: Keep on truckin’. I mean what do you do? I just… I like work. I like my boyfriend. I like dogs. I just focus on all those things. Really in the scheme of things it's not the end of the world. Like, I have this incredible support system. I have, with this article, recently announced to the entire world that I'm going to be going off my medication and to watch out for me, and people have been really kind about it. I'm really optimistic that it's gonna be OK. Only because I don't know what else to be doing.
MH: You mention your boyfriend though. Do you guys have a plan?
JL: The nephrologist that I’ve been seeing, Dr. Di Vita, who I love and is great, suggested one thing would be to give my boyfriend my credit card since one of the symptoms is spending a lot and I was like over my dead body. That is not ever going to happen. I am not giving up financial control. I feel like that’s years and years of feminism down the toilet.
MH: But he's never seen you like this so I guess I wonder what do you tell him? About, like, “Hey honey. If I do this, maybe call my psychiatrist.”
JL: That's a really tough thing to prepare someone for, because you can't. And that is definitely the hardest part of all of this, is that I do not want to go through another episode, my family doesn't want to go through another episode, my friends don't want to. But I know how to, and I know that I can. I don't know that about him. Like I think that… I think he will be like a solid foundation. But, it's a lot to expect of someone. And I am worried about it.
Not long ago, Jaime started taking a new drug that her psychiatrist thought could work for her. But it slowed her down, made her anxious, and she had to stop taking it.
So for now, she’s still on lithium. She’ll try easing off again in a few months.
We’ll keep checking in with Jaime. And when she wants to come back on the show, we’ll have her.
If you like what you heard, share it. Tell your friends. Post it on Facebook, or tweet it out. Only Human is a production of WNYC Studios. This episode was produced and edited by Molly Messick with help from Amanda Aronczyk. Our team includes Elaine Chen, Paige Cowett, Fred Mogul, and Kathryn Tam. Our technical director is Michael Raphael. Our executive producer is Leital Molad. Special thanks to Emrys Eller, Joseph Frankel, Winn Periyasamy, and Lena Walker.
Jim Schachter is the Vice President for news at WNYC.