Jennifer Nykanen is a survivor of sexual and emotional abuse, self-injury, and 7 suicide attempts. She lives with Dissociative Identity Disorder (previously known as Multiple Personality Disorder) and depends on Social Security benefits to make ends meet due to this disability. She lives in Austin, TX, and was 32 when we spoke.
Last time I [cut], I was 26... Let’s see, that was the first time 911 was actually called. I spent probably a good week in Shoal Creek, the 1950s psych ward. I swear to god, they pulled it straight out of the 1950s, 1960s. It’s not okay...
I can’t say that anything necessarily good came out of Shoal Creek. Nothing really does. Shoal Creek is a holding tank and nothing more. That is how the majority of psychiatric hospitals are treated. They hold people. They drug them into their own particular forms of oblivion and when it’s decided that they are no longer a danger to themselves or others, they are then released back out into society generally with no actual help because that, of course, is the best way to keep people alive. Ah, Texas, whatever shall we do with you?
Des: Would you really relegate that idea just to Texas?
Jennifer: Oh, I know it’s not just Texas. I know it’s not. I know that it’s happened a lot of places. I have heard horror stories of people going to psych wards in tears, truly terrified that they are, in fact, going to kill themselves, and being turned away because the staff there has decided they don’t have a real mental illness. The staff!
And all I can think is, 'Really? Like, really? Somehow the concept of mental illness is foreign to the staff of the psychiatric facility. This just happened. Really?'
But I’ve been in situations where I’ve gone looking for help. There is nothing quite like having the experience of walking into emergency psychiatric services... to be told that I couldn’t go there and actually expect to get help...
I complain about Texas because one, I live here, and two, it’s one of the worst funded for mental health. It’s just not a consideration here. They don’t care. They just don’t care.
I’ve watched waiting lists happen for public mental health services that are easily five years long, when the only cases they’re taking are what are deemed to be the absolute worst—and absolute worst case for them is you have a suicidal, homicidal schizophrenic on your hands—and these are the people that are making up the five-year list.
They’re not taking into consideration the children who are in need of that kind of help. They’re not taking into consideration anyone who has any other form of mental illness, and then the only thing they’re doing is drugging them. There is no therapy. There is no 'so this is how you may want to try to function.'
Des: How did you get on disability and how is that working for you?
Jennifer: Getting onto disability was…it actually took less time for me. That was only a three-year fight. Generally, that takes about four years and a federal judge. For me, it took three years and a federal judge. I got lucky. The first time they deny you outright. Doesn’t matter if you qualify or not. They will deny you.
I was still with [my ex] at that point and really, [he] was the one who kept pushing for the disability and kept moving the paperwork through. I was in denial. I was 23, 24, 25 years old. I didn’t want to be disabled. I did not want that labeling on me. I didn’t want to be that person. I saw it as making me a less valuable or worthy person if I had to take that labeling on...
[My poor ex]. He was fighting with lawyers and then fighting with me because I didn’t wanna. He went through hell. He went through hell trying to help me make that happen, and eventually I came around, ‘cause it was pretty clear that I just…I wasn’t functioning on my own. I wasn’t truly able to hold a job.
Then, unfortunately, much like now, I was, and continue to be, very much all or nothing. When I work, the only thing I do is work. There is absolutely nothing else. When I go home, the stress from the job does not stop. My head is still at work, still working through those problems, and I will go to sleep with that, and I will wake up with that, and I will go back to work to face that, and there’s no outlet. I don’t have the balance that’s necessary. People need to be…while you need to work, people also need to be able to have a life in order to have those social outlets and emotional outlets, and I wasn’t allowing myself that. And then I was pushing myself into 12 to 14 hour days, and not too long before Christmas, I broke.
I just snapped and lost my mind and found myself shipped back out to—well, wait—that time around Christmas would have been Shoal Creek again, and it was after that that I would have gone to Timberlawn for a 27-day stay. They have an intensive, seriously intensive, inpatient program, which I can definitely appreciate, although it’s kind of gone to hell over the last few years, I’m sorry to say. That is not as helpful as it once was, which is sad considering the ridiculously hefty price tag that’s on that. I don’t understand why [the cost of] a single day [of inpatient care] in a program that actually has the potential to help me, one day is double what I get in a month… When I was there, it was $2,200 a day.
Medicare covers 50% for mental health. That’s it. You also have a limited lifetime number of days that you can go inpatient.
Des: Even if you’re on disability for mental health?
Jennifer: Yes. It’s insane. If I had AIDS or cancer or was missing a limb or blind or deaf, I would have such an easier time. I would not be paying anywhere near the price that I’m paying because, for those things—for physical, medical—coverage is pretty good. You know, when you’re talking, "So, we’re only gonna cover half of this," and you’re looking at inpatient stays where, if the only thing you have to pay is 20%, you’re looking at a $5,000 price tag, you can’t be mentally ill and realistically expect that you’re going to get quality care if you’re on disability, because you’re not...
If you want care, if you want quality care, you will pay top dollar. And while it’s nice to have a steady check—it is damn nice to have a steady check—that steady check doesn’t honestly cover what it takes to get the help you need to fight for your own mental well-being.
The therapist that I’m able to see, I am only able to see her because she is kind enough to write off my copayments. Otherwise, I would not be able to realistically afford $50 a week to be able to see her. It wouldn’t happen. The only reason I’m able to get my medications at all is because I see a cheap doctor... and then there’s the additional help that I get to drop the copayment on my prescriptions to something I can actually afford while getting this other additional help to be able to pay for the prescription insurance because Medicare does not include prescription coverage. That has to be done separately.
Des: And if you’re disabled, can you work legally?
Jennifer: That depends. That very much depends. Any month, and if I remember this right, any month in which you make over $900 is considered substantial work, and there is a grand total of, I want to say, nine months in which you can have substantial work. For me, this is lifetime total. Nine months before they completely yank my disability.
Des: So you can’t work, but you can’t get the healthcare that you need because you can’t afford it?
Jennifer: Right. The best I could do if I didn’t want to put my Social Security and the coverage that I currently have at risk would be a part-time job, and I would be incapable of making more than $600 a month. That would still affect my disability. It would still lower the amount of my check, but I would keep my medical coverage. It’s absolutely ridiculous and I listen to all of this bullshit being spouted [about the] Affordable Care Act and... It’s insane. It is completely insane, and when I’ve talked to other people about what it’s like and how hard it is just to get the care that you need when you’re dealing with a mental health issue, they look at me like I’ve grown an additional head and clearly I must be insane. I have to be full of shit. This is America. That could never happen here. Yeah, except for that part where it is.
Des: Do you think that it’s going to change or, rather, how do you think they could change it to make it work for you?
Jennifer: To make it work… it’d be nice if maybe they could cover a more substantial portion of mental health like they do for physical health. That’d be novel. It would be nice if maybe, when they are dealing with people who are disabled due to a mental illness, they didn’t screw them so incredibly hard on the mental health portion of their Medicare when they finally manage to get it, because you have to be on disability for two years. It does not go from the date of disability. It goes from the date you first received your check. Two years from that day you received your check, you become eligible for Medicare...
It would be nice if the various states could actually—especially dumbass places like Texas—if they could manage to put some more funding into public mental health. If you’re gonna take a real fucking look at it, the majority of the people who are sitting out on the streets, all of the homeless that are being bitched about, an easy two-thirds of them are mentally ill. They’re out there because their schizophrenia didn’t allow them to maintain a job. They’re out there because their paranoia prevented them from being able to go to work. It’s this entire population that’s just being left and forgotten. It’s so easy just to say, "Oh, well, you’re crazy," and then kick it under a rug like nothing ever happened because it’s not up in your face like, I don’t know, a missing arm, someone going into a massive asthma attack. I’m not carrying a scar on my chest ‘cause I’m a heart patient that I can show you, so it’s easy to ignore.
And then there’s this…if I want to be able to actually get a job, especially now, I have to be willing to lie about my disability. I have to be willing to say that that disability doesn’t exist. I can’t actually let them know, because if an employer knows about my disability, because it’s a mental illness I’m going to automatically be rejected because there are so many other applicants who aren’t dealing with that issue who don’t need the special consideration.
And that’s just the way it fucking works. It doesn’t matter if it’s right or if it’s wrong or if it’s how it should or shouldn’t be. It’s just what it is. And that’s fucked for a lot of people. I keep watching something that holds lives in its balance come down to bullshit arguments over dollars and cents. There is no fucking logic in that. How cold does a person have to be to decide how much another person’s life is worth? The last time I heard about any type of shit like that happening, we were buying and selling slaves. Sometimes I wonder if I am actually crazier than everybody else, ‘cause damn, a little compassion wouldn’t hurt.
Des: Why did you decide to share your story?
Jennifer: I’m hopeful that just maybe I can be one more voice that gets somebody somewhere to pay attention to the fact that there’s an actual fucking problem here and being quiet about it, pretending it never happened, deciding that it can only be spoken of in hushed tones and making it this taboo subject is not doing anybody any favors. The only thing it’s doing is raising a body count. There’s no sense in that.
Des: Is suicide still an option for you?
Jennifer: I can’t say realistically that it doesn’t still cross my mind from time to time. I can’t say that I have days where I wouldn’t mind just not being here. I am actually categorized as chronically suicidal, but it’s not something that stays an option for very long. I do have friends. I do have family and I talk to them, and the single most important thing is to talk. Communication is so ridiculously important. And we work very hard to keep those [lines of communication] open.
I have no intention of actually ever making another attempt and I am very hopeful that there will come a day when I just don’t have that thought anymore. Not that everything will be perfect, not that I’ll be happy all the time. That’s a fairytale. Only in fairytales did Cinderella ever live happily ever after.
I’m just looking for the ability to have an emotion without it having me. To be able to have the good times and the bad times and be able to accept and roll with them both because shitty things don’t stay shitty. They can’t by the very nature of life. Nothing is capable of staying the same, and as long as I can keep ahold of that, well, a suicidal thought will come across my brain, but that doesn’t mean I’m gonna act on it and that’s a damn sight farther than where I was.
If you’re feeling suicidal, please talk to somebody. You can reach the National Suicide Prevention Lifeline at 1-800-273-8255. If you're not in the U.S., click here for a link to crisis centers around the world.