A Best Kept Secret

Caleb Chafe
35
4325

First and foremost, I want to say that what I have chosen to write about is very hard for me to express and is in fact very painful. I am still unsure how to put it into words as describing psychosis is almost impossible, much like trying to accurately describe a dream.

When I was a child I was described as peculiar, with an overactive imagination. I had many imaginary friends and would often hear my name when the wind blew. This was not considered odd because many children live in fantasy worlds. As an adolescent I was very rebellious and spent most of my days riding skateboards, idolizing musicians and expressing my dissatisfaction with society. I became addicted to heroin at 16 years old. Once I graduated high school, I attended a state college but failed out after one semester.

Around this time I started feeling as though I was being followed. I continued to try and make a life for myself by taking classes at a vocational school and working nights at Stop and Shop. My home life became intolerable and I knew that something had to change. I decided to quit using heroin by getting on Suboxone, and I went back to college in Vermont. This is when things started to get bad.

It started very slowly and then came on very rapidly. Over the course of about nine months, I became increasingly paranoid about cars following me. I felt as though I was being watched through cameras, which resulted in me destroying my electronics. I stopped eating for a few days due to a delusion that I had evolved to the point where I no longer needed food or water in order to live. The voices that I heard began to bother me to the point where I would punch myself in the face as a way to get rid of them. I would take multiple showers a day, turning the water up to maximum heat and then to the coldest setting because it made the voices lessen.

Other students became alarmed by the way I was acting and reported it to the school directors. I then began to believe that people were entering my dorm room in order to get information on me. I believed that if I was unable to escape, I would be killed. But I did not feel like I could leave because I thought I was constantly being watched through cameras. I continued to hear a loud pounding sound on my windows and door, but when I went to answer no one was there. It was like something out of a horror story.

Eventually one night I left my dorm room, got in my car and drove 110 miles an hour until I ran out of gas. I then got out of the car and started running until I collapsed. The police eventually picked me up, and I was put into a hospital where I was restrained and injected with Haldol and Ativan.

When I received my diagnosis of schizophrenia, I thought about the consequences of living with this illness long-term versus committing suicide, and how either choice would affect my friends and family. After long deliberation, I decided that I would try to make it for “as long I could hold on for.”

The events that follow are much more uplifting. I quit Suboxone and I slowly started to return to society. With the encouragement of the doctor that I was working with along with outreach supports, I graduated services, finished college, got off of SSDI and started working full time. While I was in school I had been unable to obtain an internship due to a drug arrest from when I was 17 years old, but I contacted my previous outreach worker and she was able to set up an internship for me. I began to do a lot of volunteer work until I was hired as relief staff. I then became a full time direct care employee at a group home.

Eventually I became an outreach clinician myself. An outreach clinician is someone who supports individuals with mental illness and substance use to remain independent in the community. Being an outreach clinician had always been my overall goal—to be able to help people the way that I was helped when I couldn’t help myself.

I now have my own apartment and I am in a loving relationship. I no longer show any symptoms of schizophrenia and I do not hear voices. I have not taken any medications in over five years. I can honestly say I am content in every way with my life. Something that I was told by many people was impossible.

Looking back at the stigma I have faced, I have come to realize that I was very repressed. My worst fear was that people would find out that I was sick, and I did not do a lot of things because of it. I felt as though I was a freak and it caused me to spend most of my days isolated. I was deathly afraid that people would come to realize that I was a “schizophrenic,” so I did my best to hide it in any way that I could. Despite my best attempts, some people did find out because it is human nature to gossip. When I disclosed what I had been through, I noticed that people were afraid of me, and on more than one occasion I noticed that they did not want me around their children.

To this day there is a part of me that identifies as a six foot one, one hundred and eighty five pound unmedicated schizophrenic male with a history of heroin addiction—something so terrible that it is second only to a terrorist, a child molester or a wife beater.

The struggle that I now face with stigma is the opposite effect. People now don’t believe me when I tell them of my diagnosis. Many people have told me that such a dramatic recovery is not possible and that I must be embellishing my story. I have had people refer to me as “A Best Kept Secret” (a reference to a photo scavenger hunt at the agency I work for). I have felt shame for the fact that I was getting money from SSDI for the time I was out of work due to the side effects of the medications. But the most common things that I hear is, “Well… you became psychotic because you did a lot of drugs.”

The truth is that I stopped using hard drugs when I decided to go back to college. I did, however, continue to use marijuana quite frequently prior to my psychotic break. To me, marijuana felt like a medication because when I smoked it caused the voices to calm down, but about an hour into the high they would return louder than ever. Coming off of marijuana was even more difficult for me than withdrawing from heroin.

Many of my family members have also suffered from psychosis and I can honestly not attest to why I recovered and they did not. But I know that I have been extremely lucky with the services that I’ve received. After working in the field, I have found that the majority of people in the mental health system are not getting adequate care like I received during my first psychotic episode.

I was lucky enough to have a doctor who took a nontraditional approach to schizophrenia and worked with me on coming off of medications. He met with me weekly for the first few months that I was out of the hospital. When I was first put on Haldol I experienced blurred vision and thought I was going blind, which caused intense fear especially when hearing voices. I fidgeted back and forth constantly, shuffling my feet, which made me embarrassed to go out in public. Zyprexa caused me to gain fifty pounds in six months. I became so lethargic on Risperidone in combination with Suboxone that I slept seventeen or eighteen hours a day.

Over the course of several years, I tapered down my medications until I was on only a small dose of Abilify. I did not see any effects from Abilify, but I continued to take it in fear of what would happen if I stopped. When I did stop, I noticed no difference or increase in symptoms in any way, and this has remained consistent over the course of the past five years.

I want people to understand that my recovery did not just happen. I had to work extremely hard to get to where I am today. After my psychotic break, I started having PTSD symptoms and it became hard for me to leave the house. I was able to get out for an hour each day. I worked my way up from having a difficult time taking one class a week, to working full time and being on-call for four residential programs with over 60 clients in outreach. I made changes to my diet, started exercising regularly, learned how to cope with panic attacks and used reality testing. I also continue to recognize when I am starting to struggle.

It has been very hard for me to get to where I am today. I did not just fall into my job, my relationship or my lifestyle. Every day I get up and feel thankful for everything I have. There will always be a lingering thought in the back of my mind that I may lose my sanity, but as of today I can honestly say that I feel as though I am cured of schizophrenia.

35 COMMENTS

  1. Caleb,

    Great story – well done for having courage to share; every story like this adds up to influence society as a whole in a positive direction.

    I resonated with this part,

    “When I received my diagnosis of schizophrenia, I thought about the consequences of living with this illness long-term versus committing suicide, and how either choice would affect my friends and family. After long deliberation, I decided that I would try to make it for “as long I could hold on for.””

    This is where things could have got really bad and pushed you into suicide or chronicity (not being able to function long term) if you hadn’t had a recovery-oriented doctor. As it was, you were already very scared by the prospect of having an incurable lifelong severe disease (“schizophrenia”), as you expressed in the article.

    To me, along with excessive drugging, this is where the system does so much harm – by brainwashing individuals into believing they “have schizophrenia” and must lower their expectations for relationships, work, and being fulfilled. The negative expectations the system creates are a profound obstacle and in many cases more of a barrier to recovery than whatever was going on first in the person’s life.

    Even if they recover, mainstream mental health workers often tell you you will be “managing your illness” and “in remission”. And that is just bullshit – people really can get better and “no longer have schizophrenia”, to use the crude, reductionistic language.

    I have quite a similar story to you, breaking down as a young person, going through extreme states, being on loads of drugs, but then finding support and a way to recover so that now I work full time and have good relationships and am off drugs. As you say it is very hard work, but totally worth it in the long run – definitely much better than ending up as a burned out, nonfunctional husk in the psychiatric system.

    Lastly Caleb, I have one shameless advertising plug – if you don’t know the ISPS group please check it out – http://www.isps-us.org – and consider joining its Yahoo groups email listserv.

  2. Caleb

    A very moving story and so well written. You have shown such great resilience in the face of enormous societal and individual obstacles. I am so glad you decided to be public with your story. There is so much that can be learned from your experience, and so much much that challenges the current functioning of our “mental health” system.

    Have you reconsidered the negative effects of the way our society (led by Biological Psychiatry) has labeled more extreme psychological states as some types of “diseases” with names like “schizophrenia,” and how this pseudo scientific narrative impacted your own outlook on what was happening to you. Because of this false narrative (so embedded within our society) people now doubt your story and do not even believe you ever actually had “THE DISEASE” because you are now no longer exhibiting the so-called “symptoms.”

    And additionally as it applies to the “disease” concept of addiction, if you do not currently attend Twelve Step meetings to address your “disease of addiction” to opiates, then many of those same people (infected with this similar kind of thinking) might now say you never REALLY had a TRUE addiction to opiates. After all, opiate addiction is the “disease” and NA/AA is the “medicine” – “don’t take your “medicine” the rest of your life, you are most certainly destine to relapse.” I have counseled dozens of people who have had to face the negative effects of this “disease” based narrative which stood as a serious obstacle to their recovery.

    Your story indicates that you believed (based on what you read and/or were told by medical authorities) that you had an incurable “disease” and needed to take “medications” the rest of your life to treat it. Even your current fears of a “relapse” may imply aspects of this sort of belief.

    Having done addiction support work for over 25 years and studied the effects of all kinds of drugs, your story tells me that quite possible the mind altering DRUG effects of pot (THC) may have been a catalyst that exacerbated already highly aroused emotional feelings and thoughts that you were experiencing. My experience tells me that some people are very sensitive to the effects of this drug, or that people’s relationship with pot can slowly evolve over time to a point where it becomes a “trigger” fueling more paranoid type thinking and feeling. This is especially true when a person becomes more isolated and alone and tends to be engaged in more of a *monologue* with themselves than a social *dialogue* with other people.

    And then following your emotional break, various psychiatric DRUGS had (as you described) a combination of very negative effects (lethargy, serious weight gain, a shuffling gait etc.) and quite possibly some positive effects of providing sleep and tamping down your extreme emotional state. You are very fortunate to have left behind these drugs before some of the more long term damage and negative effects that recent statistical analysis and scientific studies reveal.

    Yes, mind altering “drugs” can have very serious negative effects on people and, at other times (especially in the short term), some positive effects that may help people cope with a difficult reality, especially those experiencing more extreme emotional states.

    Caleb, I have shared my reactions to your story to express how you have inspired me (and I am sure many others) about overcoming a period of such enormous emotional distress in your life. I also would hope you would reconsider the acceptance of the “schizophrenia” label as a legitimate scientific category of mental “diseases” to be used without written quotations. Use of quotations, and other written forms of critique, would provide a necessary challenge to the Biological Psychiatry narrative that has become so deadly in our society.

    I also would suggest that to call major mind altering drugs (such as Haldol, Zyprexia etc) “medications” is to unknowingly support the current pseudo scientific narrative that these drugs are “medicines” treating “diseases.” Big Pharma and Psychiatry have spent billions of dollars over several decades convincing the public that their DRUGS are actually “medications” treating brain “diseases” by acting as “magic bullets” correcting “chemical imbalances” in the brain. I believe we must oppose this ultimately oppressive language and call these chemical substances exactly what they are – mind altering drugs.

    By making some of these changes in how we use language regarding psychiatric labels such as “schizophrenia,” and countering the “medication” myth, we are slowly creating conditions in the world where people like yourself and millions of others will not have to suffer from all the oppressive forms of treatment in today’s “mental health” system and the types of “disease based” thinking that act as a form of mental chains inhibiting more liberating ideas and alternative roads to recovery.

    Caleb, I hope you find my feedback as both helpful and validating to a truly inspiring story that must be spread far and wide.

    Respectfully, Richard

  3. Congratulations on your robust healing, and getting to the other side of all that you describe. I hope you found it freeing to tell your story. It is courageous and inspiring, and in addition, you are speaking a truth that many cannot yet fathom. So please, keep speaking it, because it is hope, encouragement, and an example to others who so easily feel defeated, thanks to extremely oppressive and reality-distorting systemic stigma.

  4. “I felt as though I was being watched through cameras…”

    And the treatment for that is getting locked in a ‘hospital’ with big ugly surveillance cameras covering every square inch of the place.

    I wonder if they are planing any hospitals for the treatment of arachnophobia so they can put big hairy fanged spiders on every wall and maybe they can have a ward for Ophidiophobia, fear of snakes but they wouldn’t need to stop off at the pet shop to decorate the place they could just have some people from the NAMI pharma funded front group come down, those snakes will do anything to push more pills and remove patient rights.

    I just remember a buddy from my time in the UHS hellhole that was so stressed out by being on camera 24/7 with no place to hide and no one cared. I cared, I took a crayon and fouled the lens of the one in the TV room and no one came to clean it for days.

    The worse was him on the phone with family, please help get me out of here…, no you have to stay and get ‘help’. Then the inevitable I hate you go to hell part that is a common theme around those phones when people call family upset and then family calls the hellhole help. They traumatized the hell out of that dude sticking in that violent chaotic nightmare.

    Cameras everywhere, doors locked, people walking around with clipboards looking at you then writing stuff down. Its almost like they sat down and said how can we create the ultimate hellish nightmare for people suffering from paranoia.

    • Really good point. When I was hospatilized for three weeks I was terrified of being there (I thought staff might kill me with the injections, another patient might attack me, the constant surveillance). They offered 0 therapy aside from group sessions that were so packed I could only speak for a few minutes. Plus we focused on problems that weren’t my concern (substance abuse, etc). Most of the time we were in a day room with twenty patients who either scared me or confirmed my delusions for the most part. My family only had to say to me “stay there and get better.” Which at first frustrated me because I wasn’t being helped. As the weeks drug on it made me angry, paranoid and more in denial. I had hardly improved, even after three weeks of full compliance to all therapy and medication, they wanted me transferred to a rehab for 30 more days before releasing me. There was no discussion. They said I would voluntarily enter the rehab or they would stop talking to me. I felt utterly abandoned, misunderstood, hated and blamed… As far away from helped as possible.

  5. It’s rare for Mad people to have both the opportunity and the confidence to say PUBLICLY that they’ve recovered, largely because they have worked incredibly, incredibly hard. Caleb, your future is bright and secure, so long as you hold fast to your “insight” into your vast contributions to your health and professional successes. Don’t let anybody try to fool you into thinking that you have an “incurable, lifelong brain disease” that may only be in “remission” for no apparent reason.

  6. Your story is truly heartfelt for me. I hope you will consider researching how some young developing brains ( thru at least the later twenties) are so negatively altered especially by the potent strains of THC-pot.

    The psychosis you’ve written about is very similar to what happened to my oldest son in 2009 & again in 2011 ( both episodes “only” THC was the substance on his toxicology reports & what he admitted to having used). The pathetic experience with the MH “industry” as you’ve explained is exactly the horrors my son lived through, too.

    For my son, I believe he was hit by a perfect storm of adversity, and being labeled “mentally ill for life”( assigned “bipolar one”) despite no family history & twenty-three years of always healthy, normal mental health was a horrific ordeal that he clearly endured. I will forever believe the barbaric treatment with neuroleptics my son received, both hospitalizations, though he weaned himself off ALL psychotropics meds within several months post discharge ( the 2nd psych hosp the out-patient psychiatrist who treated him in-patient did stop the neuroleptics at the first week follow-up) were evidence how inhumane the MH system remains. To have denied how THC-MJ can trigger these out of mind experiences is shameful. I began researching the connection b/t THC & psychosis immediately but in 2009 a mother’s request asking the so-called “experts” to read their own psychiatric journals was ignored. I hope & pray as these episodes are being seen daily in ER hospitals across the country, kids & their parents are being told the truth, not denied the scientific evidence based data known to many countries that have superb psychiatric epidemiology studies ( like Denmark). America, despite 8 states have now legalized “recreational” pot, STILL has no national tracking system:-(

    Your story Caleb, however, has an uplifting way through the traumatic journey, unlike my son’s end of story. I hope you can keep sharing this message & give HOPE to so many young people who travel this same road. It’s been almost five years since my beautiful 6’4″ full of life son after coming out of psychosis, a 2nd time (within 18 months) while in cessation from marijuana took his precious young life at age 25, shocking & devastating his family & many friends. There’s a syndrome “cannabis-withdrawal- suicide” not well known in America, but is occurring. Sadly, as pot legalization is sweeping the country, scant education to warn the youth of today is reality. Kids still in 2016 do not even consider pot “a drug” & those that use pot & suffer no ill effects refuse to accept some can not use this substance. Plus, the mega billions involved with pot cultivation & distribution further clouds any reasonable education of THC-marijuana harms.

    I can’t bring my son back, but I’d like his legacy to help forewarn others. What my son experienced & died from -the consequences of marijuana use- was completely preventable. I’ve traveled around the globe to find answers & have met many true professionals (addiction therapists, neuroscientists, board certified MH experts -not like the ones that denied pot could trigger psychosis when my son was hospitalized twice, medical journalists) but it’s the many parents I’ve been contacted by who share these similar stories of “psychosis & cannabis” that prompted me to start an educational website to help support families who experience what our kids are suffering. There’s tremendous info on the website which is anchored by a brilliant neuroscientist.

    Caleb- I wish you a long & heathy life. I’m so happy you’ve written for MIA.

    Lori Robinson
    founder http://www.momsstrong.org

  7. Sorry to interrupt with this but people need to know:

    MURPHY ALERT!!! THE 21ST CENTURY CURES BILL IS THE REPACKAGED MURPHY BILL INCLUDING AOT! This has not been made clear — it’s vital to CALL YOUR CONGRESS PEOPLE TOMORROW (Tuesday). Watch for further posts tonight and/or check out the organizing forum. (Don’t reply to this here, we don’t want to divert the discussion.)

  8. Hi Caleb,

    Can you contribute your story alongside others who have been/ are going through recovery?
    I am developing a storytelling and mental health platform with the ultimate aim of curating a museum exhibition. Soul relics Museum is a platform for people to read and tell stories of mental health through objects that help them connect or express to a present or past experience they have had with their mental health. The object can be anything personal to something in the system. It’s a unique and creative idea to help people come forward and share with others what mental health problems have been like for them and a safe and constructive way to read of others experiences while being brave enough to share your own. Together, we can create a collective voice in raising awareness and education on mental health!
    All you need to do to help is to take a look (http://soulrelicsmuseum.me ) and write a short personal story (http://soulrelicsmuseum.me/Contribute.html)!
    If you agree with the initiative, I would be super grateful if you could help me promote it (eg. share on social media and contribute to the discussion) as me as an individual can only do so little in unifying people’s voices.
    Let me know if you have any thoughts!

    With Solidarity,
    Van