People who don’t have schizophrenia can struggle to understand how frightening some of the disease’s symptoms – which include hallucinations, delusions and disordered thoughts – can be. Here I recommend several excellent and creative resources to help bridge that gap.
1. In “The Origin of Fear”, Inez Holger describes living with paranoid schizophrenia in fresh, vivid terms that combine optimism with unfailing honesty. Published last fall in the Bellevue Literary Review, a slightly different version of the essay was just reprinted in Utne Reader.
Excerpt from “The Origin of Fear”:
“Just how do you explain to anyone, even friendly girls with chignons, that something wispy and curling is crawling beneath your skin?
As if those invisible intruders weren’t enough, I could not understand my clock anymore. Little arrows pointed to numbers, like three and five, or eleven and six, and I had a vague feeling I should do something, but I had no idea what. Go to class, go to bed, go to eat? But to get to class I had to go down the stairs, and the stairs were revolving the way they do in spy flicks after the hero gets poisoned. Everything in his line of vision swirls around until he passes out and hits the floor, but I didn’t pass out. I groped for the floor with my foot and clung to the handrail. Everywhere I went, whether to class or to bed, a ruckus throbbed in my head. Shadowy images of helpless victims in guillotines snapped in my mind.”
2. Elyn Saks was class valedictorian at Vanderbilt, received a master’s degree from Oxford, and graduated from Yale Law School before becoming a prominent legal scholar at the University of Southern California. Notable accomplishments for anyone, but as Saks revealed in her memoir The Center Cannot Hold: My Journey through Madness (Hyperion Books, 2007), she achieved them while enduring psychotic delusions and other symptoms of paranoid schizophrenia.
Published to general acclaim, The Center Cannot Hold counters the stereotype of the schizophrenia patient as a violent person doomed to a life of misery. Saks also reveals how institutions mistreat patients with serious mental illness. Highly recommended.
Excerpt from The Center Cannot Hold: My Journey Through Madness:
“I screamed at the top of my lungs and struggled against the group of hands pinning me down, but I was no match for them, and soon the hands were fastened tight. Then it got worse, since apparently binding my arms and legs wasn’t enough. They arranged a net over me – an actual net – from the top at my neck to the bottom at my ankles, covering my legs, my torso, my chest. And then they pulled it snug at the four corners. I couldn’t move at all, and felt like all the breath was leaving my body.
“I can’t breathe! I can’t breathe!” I cried.
“Yes, you can,” said the voices in unison. They were standing over me, watching. I continued to gasp and beg, and eventually they loosened the net somewhat, and I could actually inhale. (I later learned that a hundred or so people die each year in the U.S. while being put or kept in restraints.)”
3. Here’s a slideshow simulating what a person with untreated schizophrenia hears and sees. NPR created the slideshow from a simulation that Janssen Pharmaceutica produced with input from schizophrenia patients. Read the NPR story about the simulation here.
Turn up your sound to hear the voices.
4. Henry’s Demons: Living With Schizophrenia, A Father And Son’s Story. Simon and Schuster, released February 1. War reporter Patrick Cockburn and 29-year-old son Henry alternate narratives to describe Henry’s multiple hospitalizations and gradual recovery from schizophrenia. Unlike Elyn Saks and Inez Holger, Henry’s hallucinations are associated with nature — wind, animals and trees speak to him, and although they order him to behave in ways that endanger his life, he’s loathe to completely give them up. I haven’t read the book yet, but both The New York Times and The Guardian give it solid reviews. Read The Guardian’s review and interview of the authors here.
Please share your own resources and insights on what it’s like to have schizophrenia.
im so tierd i want to sleep
i know your coming i want to weep
the dark draws in and pulls you near
and then you whisper in my ear
go away far away
dont come back another day
you dont seem to hear me though
who are you, friend or foe?
either way i dont want you here
whispering my name in my ear.
tierdness fades im wide awake
do you want my life to take?
leave me now and for ever
cause i am at the end of my tether.
J.
Thanks so much, Jaquira, for sharing your poem.
Amy this is a wonderful way to tackle the list post. You draw in a lot of different ways to get information about the books/video you recommend from excerpts, to book reviews, and other articles. I really like the diversity of resources you present here, you do a great job giving background.
Most normal people dont realise that our auditory and visual hallucinations are the reason why we act out.
If a schizophrenic person says that they think the government has implanted devices in their heads, they have heard / seen this through auditory / visual hallucinations.
And that goes for every single action which you find ‘off-putting’, it is the result of these delusions/hallucinations.
If we go unmedicated, then the delusions and hallucinations can be with us 24 hours a day, 7 days a week, 365 days per year. How long are you actually in a room listening to us?
After a while, if we are unmedicated, we can cave into the delusions / hallucinations.
The second point Id like to make is that if we are stable on our medication, we can hold down full-time jobs, take care of ourselves and our children, pay the rent, rates, mortgage, power, water, insurance, drive cars and lead a fairly normal life. But, in order to do this we need to be able to retain a job in the first place and for that to happen the news media has to start talking about Recovery from Schizophrenia.
Hi Pisces,
Thanks very much for your insightful comment. I agree that in general the media has done a poor job of providing the public with the facts on schizophrenia. My hope is to help counter some of this misconceptions by offering these resources.
A few more thoughts:
Reading “The Origin of Fear” and ‘The Center Cannot Hold’ challenged my conceptions of schizophrenia and helped me understand exactly the points you make. I found ‘The Center Cannot Hold’ particularly illuminating, because Elyn Saks describes her visual and auditory hallucinations and their effect on her life with such clarity and detail.
Also, in ‘The Center Cannot Hold’, Saks clearly states that she doesn’t want readers to replace one misconception of schizophrenia (that it’s a hopeless diagnosis) with another (that everyone with schizophrenia can or should accomplish what she has, and are somehow failures if they don’t). The point is to see people with schizophrenia as whole people who, like everyone with a serious disease, need and deserve particular forms of assistance and support to live fulfilled lives.
Finally, I want to add that Inez Holder (author of ‘The Origin of Fear’) has achieved what you call ‘recovery’, and she discusses the factors that have helped her do so:
“I gradually recovered. At the time of my diagnosis, prospects for a restored life were dim (“you’ll spend a lot of time here, dear”), but now, about half of schizophrenics recover when certain factors are present: early treatment, cognitive therapy, permanent housing, supportive relationships, and the good ol’ inborn trait of persistence. It just so happens I was born persistent, very persistent—ask my husband. Whether by accident or by mercy from heaven, however you choose to phrase it, all the other markers needed for recovery also fell into place. The most critical factor was marriage to a solid, persevering man who bravely walked down the aisle with me, though he knew that I still hallucinated.”
A terrific and insightful way to illuminate schizophrenia, Amy. And I can see from the comments that it’s really connecting with people. I do notice that this is your second post on the subject. Could you connect the two or do another exploring what you think this is such an important issue?
Thanks, Deb! The other post was actually an ‘outtake’ from this one, when I realized it didn’t fit with what I wanted to explore here. I do want to blog more about schizophrenia, though, and I like your idea of a post that connects the two. I appreciate the suggestion!
Amy, these highlights are truly telling and completely frightening (the NPR piece on voices was especially chilling). I don’t know too much about the disease but wanted to ask you whether you noticed any trends in descriptions of voices. For instance, are men more likely to hear male voices and vice versa with women? I’m also wondering whether people’s exposure to family members, friends and media dictates the tone and sound of the voices. Do some people hear their own voice speaking to them and mistake it for thinking to oneself?
I know these are tough areas to parse through, but I was just curious to see if you came across any patterns during your research.
Thanks for your excellent questions, Marianne. I’m not aware of research to suggest that males with schizophrenia are more likely to hear female voices, or vice versa. From what I’ve learned so far, schizophrenia’s manifestations are quite diverse. For example, one person with paranoid schizophrenia might have delusions (false beliefs not based on reality) that s/he is being spied on by the government, and might hear voices (auditory hallucination) that seem to confirm that belief, while someone else with the same diagnosis might believe that s/he has killed people (this was Elyn Saks’ experience). But a common denominator is that the patient isn’t able to distinguish these delusions and hallucinations from ‘reality’ — they are, to him or her, real. Delusions and hallucinations are just one aspect of a very complex disease; for example, patients may also have a flat affect (seem emotionless), disorganized thoughts, and problems caring for themselves.
Voices are just a person’s thoughts. What could be more obvious? Negative voices mean a person has internalized unloving dysfunctional role models and could benefit from therapeutic integrative role playing guided by loving people as opposed to the unloving models they picked up the thought routines from.
Mystifying a mundane dysfunction such as “hearing voices ” seems somewhat disingenuous and suggests some agenda.
The word “recovery as defined by Big Pharma means psych death on meds. The word itself was invented by Big Pharma to suit their own purposes, it has no logical meaning in itself. Assisting a person to heal is one thing but managing a person to be permanently lobotomized by chemicals and live a managed life designed to prevent them from emotional growth and calling it “recovery is evil and a kind of murder and for profit at that.http://skybluesight.blogspot.com/
Max — in my view, simply villainizing the pharmaceutical industry adds nothing to a meaningful discourse on mental illness. Furthermore, every patient should be able to a) describe her experiences using terms SHE (not you, I, or anyone else) finds personally meaningful and b) take psychotropic medications if she finds they improve her quality of life. However, I agree that there can be an important role for psychotherapy in treating schizophrenia. Elyn Saks certainly thinks so, as she states in ‘The Center Cannot Hold’. AND, after many attempts to function without antipsychotics, Saks also accepts that she must remain on them in order to function. In fact, she writes that until she became consistent about taking her medication, she wasn’t able to use psychotherapy effectively for emotional growth — it was just a place where she voiced her delusions and hallucinations. A combination of medications, psychotherapy, meaningful work, and social support has enabled her to live a fulfilled life.
This is great! I like how open and encouraging you are of your readers to learn more about the issue. I also like how you structured your first two items with the excerpts.
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I was diagnosed with paranoid schizophrenia in 1980 at age 19. Looking back over my life I can see how lucky I am though my luck is running out . I have never heard voices or had visual hallucinations. The first two and a half years of my illness which included living in the world famous Soteria House and being in a locked psychiatric hospital for 8 months was fighting not to go crazy. Going crazy at that time meant being so out of it that I would just start screaming and running amuck and not being aware of my surroundings and put in some back ward, which would just be a warehouse for the mentally ill. So i fought that scenerio every moment of every day for those first two and a half years. The agony, and fright, and suffering was unbearable. I had no relief from this state of mind for even a minute. At the time , doing something as simple as watching TV was a huge effort, I just remember I could not do simple math like adding 8 +11 = ?. At Soteria they didn’t believe in medication. But when I got locked up they put me on a massive dose which after 8 months enabled me to move from there to a residential treatment house. Through a series of small steps I got a job when I was 23 years old and stayed for 4 years. i have had setbacks but I have been employed the majority of the time since then at different jobs. I am half-way through to getting a two year ( AA ) degree from college, I live independently and I drive my own car.
Hi Nick,
The public needs to hear stories like these, and I truly appreciate you sharing yours with such eloquence, clarity and detail. I also commend your courage and perseverance in living with schizophrenia. I wish you all the best.
The voices started full-time for me at age 30. I had heard someone who was not present talking when I was 4 years old. Growing up, I would sometimes hear a smart remark from a disembodied voice too.
I had a nervous breakdown caused by buried memories due to PTSD. A friend had told me her childhood abuse story and was still associating with the abuser. I had been introduced to her abuser too. The stories were buried until I started to feel threatened by the situation. The feeling of betrayal about being put in harm’s way by people I trusted caused me a major depressive episode. The voices started within a couple of weeks. This friend’s situation had caused this same reaction out of a couple of other people too.
Every “schizophrenic” has a different story.
My biggest complaints are the the mental health experts insistance on medcation as well as the lack of coping skills training offered to new sufferers of psychosis. The health insurance situation in this country leaves many homeless too when a long-term, chronic illness strikes.
In “A Beautiful Mind”, medication use is misrepresented in order to promote the subject — a Well-Enough Brilliant Man. The fact is, John Nash hasn’t touched the medications since 1970 and suffers no more auditory hallucinations. The lie about medication use was added to the story by the psychiatrist who published this story.
Personally, the medications caused a 150 lb weight gain on my already overweight body while driving up my genetic predisposition toward diabetes, high cholesterol and abnormally high liver enzymes. It did not relieve the auditory hallucinations. The cost involved was absurdly high for a drug that didn’t relieve the complaint.
The govt mental health clinic insisted I continue to use the drugs what were causing me to experience much personal humiliation and threats due to my need for extra help from my family in maintaining my living situation such as housework and yard work. Standing up to cook for more than 15 minutes was also impossible. I have been medication-free for 2 years now. There is no change in my mental health complaints but my weight has dropped by 65 lbs. I am no longer physically disabled nor being tormented by my family.
The LMSW therpaists need additional training in coping skills for schizophrenics. Having seen this kind of ‘therapist’ for 4 years, I can say they have no training in this area. I’m learning to change my ‘perception of this irritation’ in order to function better.
Having lost my health insurance due to an employment change prompted by this illness, I was so lucky to have a family member who would assist in paying my premiums that tripled after my second psych hospitalization. When I was approved for SSDI, one must have private insurance for 2 years before Medicare is offered. What is a consumer supposed to do? No one will insure you or the costs are so high it is impossible to afford it. After Medicare, I saw some financial relief for a while. I encountered a state program for disabled people who work that offered self-funded Medicaid. I have tried 19 jobs since my illness started 8 years ago. I must stay continuously employed to qualify but at least I have many more provider options available, there is a very small co-pay ($3) for my doctor visits instead of $40 except at the govt mental health clinic which is sliding fee and my prescriptions are now a reasonably-priced expense.
Hi Christine,
Thanks for sharing such a valuable perspective on the role of medication and therapy in treating schizophrenia. As I read more and more patients’ experiences, I’m struck by the uniqueness of each person’s path. Some people with schizophrenia describe antipsychotic medications as central to their recovery or healing; for others like you, they seem to be completely unhelpful (and as you point out, the side effects of antipsychotic meds can be ferocious indeed). And while some patients have had good experiences with therapy, others describe therapists who lack the training or ability to provide appropriate support.
I want to research both these areas more and so I thank you for sharing your story. I’m glad you now have Medicare and have been able to find some strategies to keep costs manageable. The problem of costs and pre-existing conditions is a very important aspect of mental health care that I’m going to address in a blog post later this week.
At age 8, my normally obedient, beautiful child, the one I called my “Sunshine Baby” , the Peace Maker of our family suddenly began flying into fits of rage followed by being awake but non responsive-staring. One eye was larger/lower than the other. Later he began hearing ghosts. He was diagnosed with Schizophrenia and many other things and went in and out of mental hospitals for ten years-his precious childhood lost. What I did not know was that exactly three days before this sudden change in him, he had sustained a violent blow to his head while in the care of older brothers causing a frontal lobe brain injury and seizure disorder. They had been afraid to tell me for fear of “getting into trouble”. He has all the symptoms of the disease, but anti psychotics make him worse-violent and feeling as though he is “burning alive from the inside out”. He is now in a brain injury program in Oklahoma. But, I could use some hope. How I wish someone had asked the simple question, “has your child/brother ever hit his head?” when he was eight and had the sudden onset of these bizarre symptoms. Somebody help. Is there any hope out there?
Andrea, thank you for sharing this story. I’m so sorry to hear of your son’s suffering. Your family’s experiences point to the urgent need for doctors to take a complete medical history — and to the pressing need for better treatments for traumatic brain injury. You probably know that TBI has become the focus of intensive research due to its prevalence among veterans returning from Iraq and Afghanistan. I know little about specific research results, but hope that advancements are made for you and the many thousands of others who desperately need this hope.
I am a schizophrenia patient and i am going to hospital.
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I have suffered with schizophrenia for seven long years in my 19.5 year lifespan. I am glad to be voice free on Invega, and am pursuing a degree in research psychology to help others afflicted with childhood and puberty onset schizophrenia.
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Amy, the slideshow was one of the most enlightening and demystifying things I’ve ever seen. Thank you for this post. The comments were also enlightening and your comments wise.