Ep. 27 - Liz Spikol
Nov 28, 2020
Writer Liz Spikol joins us on the Behavioral Corner this time. Liz has a fantastic story of her battles with mental illness over the years and her eventual triumph over it. Next time on the Behavioral Corner, we invite you to join us.
I’ve had public mental health outbursts like Walter Wallace Jr. I’m alive because I’m white. | Opinion
For about 10 years, in my 20s, I grappled with severe mental illness. I dropped out of school, lost jobs, moved between apartments and cities. I was in and out of psychiatric facilities, on dozens of medications, had shock treatments. I had persistent suicidal ideation and was even violent at times.
My parents bore the brunt of this. They lived with constant fear and exhaustion as they tried to get me help. My behavior was so erratic that my mother had to call places — hair salons, doctor’s offices, family friends' houses — to warn them. She was constantly translating me to others, partly so that they wouldn’t be offended but mostly to protect me. For a decade, her life (and my father’s, to a lesser extent) was about serving as an intermediary and keeping me safe. It was like juggling a live grenade.
After I heard about the shooting of Walter Wallace Jr., my first instinct was to tell my mother. I knew she would know what didn’t need to be said: that the woman who watched her mentally ill child killed in the street probably has a lot in common with my mom. I don’t know her, but if our situations were even remotely similar, Wallace’s mother was likely already juggling that grenade, weighing so many options and impossible decisions, exhausted and heartbroken even before she picked up the phone to call for help. But that’s where the similarities end. Because had my mother called the police to help with her irrational daughter, she would not have seen me — a young white woman — gunned down in cold blood.
You might say this is speculation, and of course, it is. But it’s based in my experience both as a recipient of mental health services and as a provider working with mental health organizations. In both arenas, I benefited tremendously from my white skin, which rendered me unthreatening. Though I did commit acts of violence, theft, vandalism, and aggression, I never had any interactions with police that weren’t friendly. I’ve never even had a moving violation.
There were two times I brandished a knife in public,
as Walter Wallace Jr. did on the day he was killed. The first time was at a state mental hospital in Texas. I was told to relinquish the knife or they wouldn’t admit me to the hospital. I said I would never let the knife go (I had some strange ideas at the time about the magical powers of the knife). They simply said: “Well, you’re going to have to leave. We can’t have that knife in here.”
The second time I was at a hospital ER, where, after demanding to see a psychiatrist, I was put into a curtained waiting room with a bed. Within minutes, I had taken my knife and cut the curtain into strips and stabbed the mattress until its stuffing bled out. I knocked things over. The little room was a mess. Were the police called? Of course not. Instead, a nurse came in and said, “Oh, honey, you don’t want to do that.”
I have thrown bottles at people on the street; I have stolen things under the gaze of retail cameras; I have talked to myself out loud in stores that I stayed in for hours at a time. None of it got me in the slightest bit of trouble, or even attracted much notice.
And yet when I worked in mental health services as a certified peer specialist, and commiserated, often laughingly, with Black men and women about the crazy stuff we did when we were seriously ill, I noticed their stories always ended with a jail cell, while mine usually ended with a warm bed. It’s a lot easier to laugh about the years of suffering if you get to come home and feed your cat and grab some cereal from the fridge instead of getting lost in a spiral of injustice and punitive retribution for a moment you can hardly remember.
I quit my job in mental health services because, as I told my boss, it felt hopeless. “Well, you do need to quit if you think mental health recovery is hopeless,” he said. I didn’t correct him, but what I thought was: “That’s not the problem. It’s the racism I can’t fix.”
In the years after that job, I would go on to cover, as a mental health blogger, instances of police violence against people with mental illness — though it should be said that, as with the suicide by cop of my childhood friend, not all of the victims were people of color. But if you remove the situations where suicidality was a factor, you get a much more limited demographic sampling.
There will be plenty of talk now about the need for crisis intervention training and de-escalation techniques, about the need for social workers instead of cops responding to calls, and all of that is worth discussing. When former Philadelphia Police Commissioner Charles Ramsey instituted crisis intervention training for his officers, he made the mistake of making that training optional; it should be mandatory, and the curriculum should be reassessed because we’ve seen such training yield different results in different cities, and we have better ideas now about what works.
We also need to talk about nonlethal strategies for defusing tense situations; we seem to have no end of such means to protect traffic on 676 from protesters but can’t find a Taser anywhere when a man’s life depends on it.
But even with all those considerations, the truth is that if it had been me with a knife on the afternoon of Oct. 26, with my white mother behind me pleading for help, not harm, with white neighbors saying, “We know her, don’t hurt her,” we wouldn’t be having this conversation. Whether I was taken into custody or not, there’d be a warm bed for me sometime after, a snuggle with my cat, a good night’s sleep. For the friends and family of Walter Wallace Jr., I don’t think there will be a good night’s sleep for a long time.
Liz Spikol is the editorial director of Mid-Atlantic Media. She has been writing and speaking publicly about mental health issues for more than 20 years and is a recipient of the Access Achievement Award from the Philadelphia Mayor’s Commission on People with Disabilities. She lives in Mount Airy. Find her on Twitter
@lspikol.
Ep. 27 - Liz Spikol Podcast Transcript
The Behavioral Corner
Hi, and welcome. I'm Steve Martorano. And this is the Behavioral Corner; you're invited to hang with us, as we've discussed the ways we live today, the choices we make, the things we do, and how they affect our health and wellbeing. So you're on the corner, the Behavioral Corner, please hang around a while.
Steve Martorano
Hey, everybody, welcome to the Corner. Hanging with yours truly, Steve Martorano. What we do here on the Corner is that we're fortunate somebody interesting comes by, and we have a conversation. Behavior health. So think about that. And the way we behave has an impact and enormous impact on our emotional, spiritual, physical, psychological well being. So that's what we are all about when we say we're talking about behavioral health. So stick around we, as always, ran into somebody really interesting here on the corner. Liz Spikol is a renowned writer and columnist, in the Philadelphia area, having written for many, many years, for all kinds of periodicals from Philadelphia Weekly to Philadelphia Magazine, as well as the paper of record, the Philadelphia Inquirer. And Liz joins us, because many years ago, she found her niche in writing, and it was about her specific battle with the disease that dare not say its name, mental illness. So we're really happy to have Liz Spikol, with us here on the corner. Hi, Liz.
Liz Spikol
Hey, Steve, good to be here.
Steve Martorano
It's our pleasure. So I characterize mental illness, as the disease that dare not speak its name of all the things that can plague us from substance abuse to, you know, organic diseases and everything. Mental Illness still is up against this notion that you're better off not talking about having mental issues. Is that your experience? Is that what you still see happening?
Liz Spikol
Absolutely. I think it scares people. So I think a lot of the time, what we see as discrimination and reaction against people who have mental health problems is because other people who don't have those problems are afraid. I live in Philadelphia, you know, it's a big city, you know, when there's not COVID I do things like take the bus or the subway, and, you know, you just see how people interact with other people who aren't behaving conventionally. And so if there's, let's say, there's somebody talking to themselves on the bus or something, you'll notice that nobody sits next to them. Right, despite the fact that that person might not be doing anything other than just having a conversation with themselves. But it's like there's something about unpredictable behavior and behavior that we don't have an answer for that really just concerns people and makes put some make some melody. Yeah. So I think that's a big factor in the way that people react to mental health.
Steve Martorano
Yeah, I agree. You see it all the time. It's almost as though you think you can catch it.
Liz Spikol
Right. Right, exactly.
Steve Martorano
Let me move away from this because I don't want to be around it. Tell us about your background and your history, particularly when you first began exhibiting difficulties with your mental condition. Talk about that a little bit.
Liz Spikol
You know, I had my issues as kids do growing up. But there was nothing profound that plagued me. I had undiagnosed ADD and so I always lost my homework. And one time came home without my winter coat, I lost my winter coat, you know, I was like a very forgetful, dreamy kind of kid. But not I didn't have any mood issues or anything. So everything went well. And I had a successful high school career and, you know, got into the college of my choice. And everything seemed to be sort of following a rather boring but acceptable path. And then the summer after I graduated from high school, I went to the Dominican Republic, through a language immersion program. And while I was there, I was raped. And I did not understand it at the time. But what happened to me as a result of the rape was, I suffered from very severe PTSD. At that time, though, this was in 1986. And PTSD wasn't really even a part of our lingo at that time, you know, so there were things that they would call rape trauma syndrome and stuff like that. But it was really poorly understood compared to now. So I started having hallucinations and delusions and fears and it should be said I was a 17-year-old who was raped by somebody in the house where I lived, who I had to continue living with until I came back to the States, maybe a month later. So some of my feeling fearful that wasn't irrational. But I definitely had a sort of what I now understand as a pretty typical trauma response. So that was the first time that I ever felt like my brain, or my mind was betraying me. And I remember saying to my boyfriend at the time, I would have nightmares and wake up screaming. And I remember saying to him, poor kid, he was 16. You know, do you think I'm crazy? And I didn't even really know what crazy meant, but I just sort of thought that that's where I was headed. And he said, "maybe," and, and I just thought, "Oh, no." You know, but it was so ... I just, I didn't have any experience with it. And so I went to graduate school after that, and the following 10 years, basically, more. I mean, I did get my master's degree, but I basically was in and out of hospitals on dozens of medications got so many diagnoses, mental health diagnoses I was in, you know, there were suicide attempts. There were shock treatments, you know, had to drop out of school went on disability, lost a job, it was a nightmare of unending misery of clinical depression and psychosis and diagnosed with bipolar disorder, that schizoaffective disorder, then back to bipolar disorder, then obsessive-compulsive disorder, then general anxiety disorder was just, you know, it was relentless trying to find the right medications, the right doctors. So it really was a harrowing 10 years of severe mental illness that took me out of my life and out of society in a lot of ways.
Steve Martorano
Yeah. Did you report the rape at the time?
Liz Spikol
I did not because I believed -- as so many females, as somebody, I shouldn't say female, but so many victims do. I thought that it was my fault. You know, so I remember that my little boyfriend at the time wanted to tell somebody, he said, we have to tell the teachers? And I said, "No, no, no, we can't tell anybody. We can't tell anybody." You know,I just, I was completely ashamed. And I just thought I obviously did something to bring this upon myself.
Steve Martorano
It's worth remembering how -- we have ways to go -- but the difference between how rape was dealt with both by the victim and by society at large, in 1986, is vastly different than it is today. This is a traumatic event. But you know, among the most traumatic events for any young person. Do you think it created the illness in you? Or do you think it triggered something that might have occurred anyway?
Liz Spikol
Um, that's a very good question. And it's one that I think is unanswerable to a large extent. For a long time, you know, there was sort of a consensus among my doctors that the trauma triggered a biological predisposition to bipolar disorder. However, that was sort of reversed years later, when the bipolar disorder diagnosis was sort of taken away. And after my years of identifying myself as bipolar, you know, but then saying, like, you know, actually, on second thought, that doesn't really look like bipolar, you know, at this point, but what I sort of understand is I certainly did have attention deficit disorder. I certainly did have PTSD, I certainly had personality issues that were formed by there were some childhood trauma, and certainly, you know, things that we become people, right, complicated people with, it's just impossible to tell I, you know...
Steve Martorano
it also doesn't matter.
Unknown Speaker
It sort of doesn't matter. I mean, I, I took a little bit of comfort for a while in this notion that you know, oh, I would have had it anyway. But then in more recent years, I thought, you know what, I don't think so. I think if I have not been raised? I don't know that I would have gone down that road.
Steve Martorano
Liz Spikol is our guest. She's a writer, and she's written extensively on her struggles with mental illness. And she's done a great service and doing that, because she's been so Frank and forthcoming as she is with us right now, Liz, let me ask you about some of these diagnoses that you get over the years. Do you think sometimes in being in front of a therapist or a medical professional with the problems you were exhibiting that they look for a label for it so that they then can treat the label? I guess what I'm asking you, did you believe at the time and do you believe now that you are you were bipolar?
Liz Spikol
So, I think what happens in all medicine is imprecise to a certain extent. But, you know, psychiatric illnesses are perhaps even more so because if you're diabetic, it's pretty obvious from a blood test what your insulin resistance is, and that kind of thing. So we don't have blood tests, we don't have strong markers yet. So I think we're getting closer for severe mental illnesses, and even less so for personality disorders, or for the sort of lesser mental illnesses or mental conditions. It is complicated diagnostically. And I think what's happened is that there are things that sort of trend, and that get to come into vogue and go out of vogue. And a lot of it gets determined by what's in the Diagnostic and Statistical Manual, the DSM, what insurance companies require, what big pharma markets and how they market things, and how doctors embrace the marketing. They're all of these forces that go, into sort of making an illness. So for example, in you know, there's a history of the illness, schizophrenia, which was seen as like a white disease early on, in the 60s, when there was a lot of ...late 50s - 60s. There's a lot of civil rights activity. So schizophrenia being marketed by medical companies and also changing in the, in the DSM to be more of a black disease, because it was like, they were sort of applying these words, to address a behavior unruly behavior, resistant behavior. So all of these social forces come into play, like what you know, the way that homosexuality used to be in the DSM, as an illness. So all of these things have an impact and bipolar disorder in the 1990s, when I was interacting the most frequently with the mental health system was very, very much in vogue as a diagnosis. It was like the diagnosis du jour and there were, there was a profusion of medications that were created and marketed despite the fact that sometimes they were just reformulations of the same thing. But they were marketed to bipolar disorder specifically. So when I think about when I first got that diagnosis, I think the doctor who was giving it to me, was very much influenced by what was happening in the culture at large and in his field. I also think I was experiencing symptoms of a mood disorder. So it wasn't unusual as a diagnosis. And at the time, it felt very right to me. Certainly, and I believed it to be the correct diagnosis for many years, although I see now that I think it probably was not the right thing.
Steve Martorano
Yeah, you know, anybody who's followed this with, with a little bit of curiosity, can remember everything you just described, about the changing attitudes. And the voguishness of making everything a pathology, I remember a book called The Myth of Mental Illness, from the middle 60s, where, you know, the proposition was, there's no such thing as mental illness, there's just people don't conform. And maybe we should Empty out all of the institutions and just let them function. There's some crazy stuff going on. So, to swing it back to how someone like yourself, who struggles with mental illness, tries to get their life back together, and you're in the hands of these professionals. I mean, you're there to try to get help. And then they describe what's happening to you. And then automatically, there's some medicine that you should be taking, what kind of meds Have you been on over your struggles?
Liz Spikol
Oh, my gosh, I haven't been on so many. But there are people who identify as they call themselves "psychiatric survivors," and they feel like the mental health system failed them. And, you know, that they were taken advantage of, in some ways, I don't feel that way. I feel like I was interacting with a lot of really good practitioners who meant well, and who wanted to do the best by me. And I had very recalcitrant symptoms that were, unfortunately, sometimes exacerbated by the medicines that I took. And so that that confuses the picture, too, you know, so you start taking these medications that affect your mood, your mood changes, you would give it more symptoms, and the symptoms are sort of chalked up to like, "Oh, well, it's the illness as opposed to the medication." So I've been on every kind of mood stabilizer, every kind of seizure medication, every antipsychotic, every anti-depression. I mean, there isn't really a psychiatric medication on the market. But I haven't been on except for some that are more recent. So I'm always pleased when I hear about one that I haven't been on because I think like...
Steve Martorano
At least I'm not there yet. Right?
Liz Spikol
I am off of almost all of those medications now. So and I've been doing much better for me being on medications for me that work is take something for ADD. And I take like a tiny little bit of a Benzo at night for sleep. But that's it. And that's been the case for a few years now. So I got for me, I was on antipsychotics for almost 20 years. And that's it's really, really hard on your body.
Steve Martorano
Yeah, Liz Spikol a writer is with us talking about her long struggle with mental illness and the various hoops one must jump through, we really appreciate what she's doing, she does a great job of demystifying this entire process. We're on the Behavioral Corner, I hope you're hanging with us.
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Steve Martorano
What was the impact on your family? And you know, how bad was it for them?
Liz Spikol
For the worst of the illness, I was living in Texas and studying Comparative Literature, which I always say is a combination that could make anybody crazy. But, you know, at a certain point, I eventually had to come home to Philadelphia for treatment. And at that point, my parents had to, I mean, I was not able to take care of myself. And, you know, my parents just had to switch into a whole, like, they had an adult daughter who was off doing graduate school, they were empty nesters, you know, and then all of a sudden, they have a daughter who's back, and who needs like round the clock care and supervision and intervention. And it was just, I don't know that my mother slept for seven years. I mean, was exhausting for them. You know, they did everything that they could do. They were extremely supportive of me always. You know, my mother always says now that she feels lucky because I was relatively compliant. As a patient. Like if a doctor, I had like a little bit of a worship thing about doctors. And so if a doctor told me to do something, I did it. I was never resistant, you know, to trying medications or interventions. I mean, she never had to really fight with me.
Steve Martorano
Yeah. Were you ever institutionalized involuntarily?
Liz Spikol
Not involuntarily? No. And I always either voluntarily admit myself or come around to the idea that "Yeah, okay, I'll go ahead with this" and sign what needs to be signed. So I was really quite tractable, always. I always have to,
Steve Martorano
well, it's sort of a double-edged sword there that if you're very good at being, I don't say this very good at being mentally ill you're level to be mentally ill longer than you have to be.
Liz Spikol
Right. And I think I was lucky to ultimately get a doctor, who I still see now who had a different philosophy. So he's a psychiatrist. But his philosophy is like, we need to do the work of psychotherapy. So that's a huge chunk of it. And also, we need to forget about labels, which is a very unusual position for psychiatrists to take. But he felt that sort of the DSM, all of the labeling and the insurance codes is all gone crazy. So you know, his attitude just told me what's going on. Tell me what your symptoms are, we'll address the symptom so you can have a better life, you know, and let's not get caught up in the name of the illness. Because once you get caught up in that, then that really does spiral.
Steve Martorano
Yeah. And that's what you're chasing, then that thing rather than what you mentioned, is the goal to get a balanced life of functioning, and relatively happy life. When did you start to have confidence that you were managing your mental illness?
Liz Spikol
Um, that's a good question. I would say, in the 2000s. In the early, early, early-ish, aughts. I felt like I had really started, to manage things better.
Steve Martorano
Were you ever violent?
Liz Spikol
Yes, I was. I was by to...it's hard to talk about because I feel guilty about it. But I was violent to people in my life, like my ex-husband. And I was violent to my pets, which I feel worse about them, the ex-husband to tell you the truth. And I was violent, sort of more generally to some property. I did some property damage.
Steve Martorano
I'll tell you why is because recently you had a piece. In Philadelphia, we had another tragic example of police responding to a domestic disturbance were where there was understood to be some underlying mental issues. They were felt they were being threatened by a guy with a knife and the result is another shooting to the death of the fellow with the knife who had mental health issues. And I know you wrote an article saying that you had been in situations maybe not exactly comparable to that, where you were looked at as a physical threat and you didn't get shot 14 times. Yeah, yeah. And we're not trying to make the point about you know, any because not all shootings are the same. But there's a situation where police are now more often than not being called upon to react in a situation where a mental health expert is needed. Is any work being done that you're aware of to make that a more seamless proposition?
Liz Spikol
I'm not aware of work being done. I'm aware of talk. But, you know, this has been an issue, basically, you know, since deinstitutionalization happens, the whole idea behind and which was a good thing. And the whole idea behind deinstitutionalization was if you take people out of these institutions, and you make them less reliant on that system, they will excel in many cases, but in the cases where they don't, we're going to offer them community-based supports that are better for them. Because they're not being you're not warehousing people, you know, you're supporting them in the community, this is all like a wonderful idea. And it has been very successful in many ways. And I think has really returned a lot of the autonomy to people who in past decades would have just been shut away forever. Unfortunately, though, our society, depending on lots of different things doesn't always invest sufficiently in community resources. So you know, community mental health and education pertaining to mental health and trauma-informed services and all of this stuff that we talked about as being like, well, this is what's good to support people who have chronic mental health issues. There's not always money that's invested. And so what you end up with is a situation where the police are responding to a lot of calls and concerns that really, they're not trained for, I mean, law enforcement, they have minimal training, and even people who are highly trained in crisis intervention from a mental health perspective, you know, it's a very challenging situation. So, now, there was a time when it was very much in vogue for everybody was talking about Memphis, Tennessee, because Memphis did a wonderful job of instituting this crisis intervention team in their police department. And so then everybody talks about the Memphis model, and they want to just sort of go along with the Memphis model. Philadelphia, you know, also, at a certain point, adopted a variation of the Memphis model, crisis intervention officers didn't make it mandatory. There were a lot of you know, there's been a lot of mixed reviews with incorporating this into traditional Law Enforcement Training. But there are programs now that we see are very innovative, that is sort of like CIT, but are very innovative. And that can be used, you know, to where you can have people who respond to mental health emergencies who are not law enforcement. Yeah, there are people who know how to handle it. And there is another sort of safety valves, you know because it's not really fair to have people with mental health problems interacting with law enforcement and assuming that that is going to go well.
Steve Martorano
Yeah, exactly. Exactly. Hey, Liz. you're managing this situation that mental illness is something that folks can live with and manage. I don't, I don't, there's no vaccine for that, of course. Nevertheless, having said that, are there situations and things you have to avoid in order to keep an even keel?
Liz Spikol
Um, not so much. I mean, the age that I'm at now I'm in my early 50s. And there is some evidence to suggest that these types of illnesses do abate somewhat in later years. Certainly, that's in the case for me, I really don't experience symptoms very often at all, if anything, I experienced the fear that I will. But I, you know, I've been really stable for many years now and haven't been hospitalized for...I mean, it might be 20 years now, since I've been hospitalized. So for mental illness, so yeah, I mean, I would say that, like any person who has a history of trauma, you know, I'm not gonna watch The Accused tomorrow, the movie about rape, but, but say, I have a very demanding job as an editorial director of a media company and, like, I, you know, what I, what I want people to understand is, whatever diagnosis you get, whatever label it is, whatever symptoms you have, it's not forever, you know, you can live with things and manage them and have a successful life.
Steve Martorano
Liz, thanks so much for your time and for your work. It's really I'm telling you, it's great. This is a curtain that needs to be fully pulled back so that people can confront it. It's not a small problem. It's not getting any smaller either. So thanks so much for your time here with us on the Corner and, you know, stay happy.
Liz Spikol
Thank you, you too.
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