When Delusions Are Real

Restored Post from May 15, 2011

My intention has never been to accuse, attack, or even blame. My intention is to heal, and to forgive others as well as myself, and, in an effort to forgive myself and those around me, I begin this series: When Delusions Are Real. The point of the series is to get a conversation going about how those of us diagnosed with psychotic disorders get people to believe our truths.

After all, once you've been diagnosed as being psychotic, your credibility is never the same. Even when you're speaking the truth.

I have a podcast on iTunes, The Real Me, on which I reveal a lot about myself, and lately I've noticed how much those podcasts have been teaching me about myself and what I've lost. This illness has taken a great deal from me, including my ability to be recognized for my accomplishments.

So, what I'd like to do here is recognize, some of those accomplishments, knowing that had my life been different, they could have been recognized in a more public scale arena. Knowing, too, that because I have schizoaffective disorder, which is characterized by delusional thinking, hallucinations, and mood fluctuations, that many times, even when I speak the truth, I am dismissed, not believed, and my truths defined as mere delusions.

I want to acknowledge my accomplishments not only for myself but for all of you out there, as well. Those of you who may or may not already be diagnosed with schizophrenia, bipolar, or any other serious mental disorder, whose truths, like mine, are so frequently dismissed as delusions. It upsets me even to write this, to realize that those around me can, and do, categorize what I say as delusional, and I wonder if that happens to all of you, as well.

I'd like to start off by briefly mentioning that I was diagnosed with Tourette's at age 12 although, according to my mother, I had shown symptoms since I was 2. I sometimes wonder whether even then I was showing signs of the psychosis that has plagued me my entire adult life.

I was 18 when I had my first psychotic break. It was Christmas Day, 1994. I was living in New York City and admitted to Beth Israel where I was given a number of tests - medical and psychological.

My toxicology report came up 100% clean, a clear indication that my psychosis was not drug-induced. My intake report by the ER doctor shows I had a 'loosening of association' and 'pressured speech,' both of which can indicate schizophrenia, schizoaffective disorder, or bipolar disorder with psychotic features. No wonder it took so long for me to get the right diagnosis. So many of the symptoms overlap.

But I want to bring this back to delusion and truth, and how people so frequently label your truths as delusional, once you've been diagnosed with a psychotic disorder.

Tomorrow, I'll give a more thorough background of my own illness - its genesis and prognosis - and then move on to those accomplishments, for which I've never truly been recognized.

In the meantime, leave me a comment. Let me know if what I'm writing resonates. Do you, like me, have trouble being believed?

As I may have mentioned already, serious mental illness, such as schizoaffective disorder, is believed to be caused first, by a genetic predisposition to develop mental illness, and second, from environmental factors. In my family, I have a grandfather, who seems to have been diagnosed with schizophrenia, according to old medical records I found recently. In addition, I have two second cousins, both of whom have been publicly diagnosed with mental illness. So, I would sure seem to be genetically predisposed to becoming mentally ill.

But, having the predisposition isn't enough. You need certain environmental factors, as well. What I've read in some of the NAMI literature is that mental illness can be compared to diabetes. A person may be genetically predisposed to develop diabetes, but if that person gets enough exercise and watches sugar intake, then the diabetes may never take hold. Same with mental illness.

In my case, I had the predisposition, and I had enough traumas - sexual, physical, and emotional abuse - and upheaval, like my parents' divorce when I was young, that the illness took hold. Boy, did it take hold.

Sometimes though, people, like my sister, who have a genetic predisposition, plus environmental factors - my sister came from the same family, had the same kind of upheaval - do not become mentally ill. Nobody knows why.

Maybe, as my wife says, it's just the luck of the draw. She's kidding. At least about the luck part because having mental illness isn't lucky, but we do have to keep laughing about it. Keep positive. You're never alone, if you can laugh with someone about it.

As I've mentioned, I have schizoaffective disorder. Originally though, I was diagnosed with depression. This was back in 1994, when I was 18.

The next 10 years or so, I saw doctor after doctor, moving here and there… trying to find my place in the world. I had 7 suicide attempts and years of alcohol and drug abuse issues-my last suicide attempt was in 2001, and I was freed of my drug and alcohol addiction in early 2003. Almost 10 years ago.

As I was getting off the drugs, I saw a doctor, who diagnosed me with schizoaffective disorder, which basically means schizophrenia with a mood disorder thrown in, and in my case, that mood disorder is bipolar with manic features. But then, in 2005 and 2006, I saw a doctor who said I didn't have schizoaffective disorder, I had a personality disorder. The point is, getting the right diagnosis can be time-consuming and frustrating. But necessary. Because once I was 're-diagnosed' with schizoaffective disorder, I was able to get on the right medication, but that's a different story altogether.

What I'm focusing on here is being diagnosed with any type of mental illness that includes psychotic features, which then makes it nearly impossible for people around you to believe your truths.

My diagnosis, as I've mentioned, is schizoaffective disorder, which is a form of schizophrenia with a mood disorder thrown in. The double whammy, you might say. But not only do I have the double whammy of a thought disorder coupled with a mood disorder, I also have Tourette syndrome, which is considered severe, since it usually tapers off in one's 20s and mine did not. I'm 36 now, so along with the confusion I suffer and the mood fluctuations, I also tic and sometimes engage in coprolalia, which is involuntary swearing or yelling out racial epithets.

Hard combination.

Add to that mix, I also seem to have aspects of OCD - have to keep my computer arranged 'just so;' PTSD - I frequently relive earlier traumas; ADD - I can't focus on anything for any period of time; Autism or Asperger's - like Temple Grandin, I may be smart, but I can't read social cues at all. Makes it difficult to hang out and just be 'one of the guys.'

My current psychiatrist, who never hesitated to diagnose me, as others had, saw me when I was at my worst. I was in the middle of a psychotic break, was in the process of a divorce (my wife and I have since reconciled), and I had no money, as my family had cut me off from my trust income. In the past, too many doctors had seen me when I did have my money, and I could hire the people to do what I couldn't - shop, drive, clean, those sorts of things. And because those other doctors saw me when I could hire the people to do what I couldn't, they all considered me to be “too high functioning” to have any form of schizophrenia.

As a result of my being considered “high functioning,” for years, I was diagnosed as having a personality disorder. Some doctors thought I had Borderline Personality Disorder; others thought I had a Personality Disorder NOS (Not Otherwise Specified). Let me tell you, having the right diagnosis has turned things around. At last. I'm now on the right meds. My wife and caregivers know the nature of the illness and know some excellent ways of dealing with the illness. And with me.

And so, although the illness will never go away, I do have hope that I'll continue to get the right treatment and that my life will continue to get better.

Now, the big one: What to do when people assume your truths are delusions.

Let's start with just a little bit more background. Last count, I had approximately 30 rehab stints and/or hospitalizations. That's a lot. When you're hospitalized, especially involuntarily, people tend to dismiss everything you say as a symptom of your illness. I understand that, but I don't like it because it's hard when people don't believe me.

A couple examples: I moved to Los Angeles in January 2001 because I wanted to be a Hollywood screenwriter. I was two days shy of my 25th birthday. I was a go-getter back then, a social butterfly, and found it easy to introduce myself to just about anyone. As a result, I met Joanna Cassidy, Dick Van Dyke, and others.

Then as my drug and alcohol use spiraled out of control, I got myself into rehab. Because I had access to my trust fund, I could afford the rehab facilities where “celebrities” went, places like Promises in Malibu. In those places, I met movie producers, writers, actors, musicians, and kids of celebrities. The point is I met all these people, and some I befriended.

And, because so many of the rehab facilities didn't help me stay off drugs and alcohol, I, along with a friend, started my own facility - Wavelengths - which also catered to celebrities. Wavelengths took a more proactive approach to getting people off drugs and alcohol.

If you ever saw the show The Cleaner, you'll have a better idea of what I mean by 'proactive.' In fact, that show was based on the friend with whom I started Wavelengths, and although I was never credited, I was also co-creator of the show.

But now, when I tell people about The Cleaner or knowing Chuck Lorre or Robert Downey, Jr., or Mel Gibson, people smile blankly, nod their head, and dismiss what I say as a delusion. That's maddening - if you'll pardon the pun.

Another example: The summer of 2010, I checked myself into a facility in Colorado, so I could get on the right meds and try to get myself re-stabilized. Because I was being admitted as patient with schizoaffective disorder, which is characterized by a thought disorder, including delusions, both my wife and my doctor spoke with the facility before I was admitted, so the doctors and social workers would know I wasn't delusional about the people I knew.

My wife and doctor also let the facility know about my financial background because I don't always look “rich.” Lately, I like to dress in t-shirts and pajama bottoms. I like to keep my hair permed and wild, and I like to wear a beard. As a result, sometimes when I'm admitted, the staff person will write that I'm a little unkempt, and when I then start talking about the money I'm worth, that staff person will flash a little, tight smile like, “Of course, you are. And I have a Swiss bank account.”

Those staff people don't always know that I can 'tell' what they're thinking - I can see it on their face - and they feel free to openly doubt my truth.

More on “delusions.”

The reason I blog and podcast is to share my story, and sometimes - I've got to admit - it's hard knowing that a lot of people may not believe me. I bring this up because I'm sure that those of you who read this blog (or listen to my podcast) must have as complicated a story as mine.

I am just spelling out some things - kind of 'straight from the heart' sharing with all of you. My family, as I've mentioned, is rich and powerful. Maybe your family was not rich or powerful, but still I think you'll understand. Their money and their power helped make me who I am, just as your parents helped make you who you are. And I'm not attacking anyone. I am simply telling the story of my life. I have earned the right to do that.

Come to think of it though, maybe I never had to 'earn the right' to tell the story of my life. People have a right to their own stories and to tell those stories in their own voice, no one else's. This is my time. My story. Not my family's. And I owe it to all of you to share a little taste of the complexity of my life, so you'll understand the complexity of your own life.

So, yes, my family is rich and powerful. That is not a delusion. You can look them up yourself. They are public people. Sometimes I think because they are public people, they have had a hard time accepting me for who I am. I know they have had a hard time accepting my diagnosis.

And, really, I am not attacking them. Maybe they can't accept my diagnosis because they think it will reflect badly on them.

I haven't talked to my family in a few years. I wish I felt sad about that, but I can't. My family doesn't love me. Sometimes I think they might even hate me because they cut off my money, and they cut off contact with me.

But I'm getting sidetracked - what my wife calls 'going off on a tangent.' So I'll stop.

One area that has always been hard and created a lot of misunderstanding in my family is my diagnosis. No one has ever accepted that I have had the wrong diagnosis for years, and that getting the right diagnosis has helped me move forward. Not that a diagnosis makes the illness easy, and in many respects a diagnosis is nothing but a label.

However, with the right diagnosis (or label), you can get the right medication, the right therapy, and people - like caregivers – that know how to deal with you. The right diagnosis is a starting point, so you can read about whatever that “label” you might be tagged with, or might need to be tagged with.

In my case, for years I was 'tagged with' Borderline Personality Disorder (BPD). On one hand, that would not have been a bad diagnosis because people then wouldn't label me as being delusional. On the other hand, when people did think I had BPD, they accused me of lying, which brings me back to my family.

In the past, my family has told me to 'snap out of it' and to 'get my act together,' and then I would be 'fine.' You can't 'snap out of' schizophrenia. You may get the symptoms under control, and you may even, as John Nash did, seem to recover from the disorder, but you don't 'snap out of it.'

My family believing that I was capable of getting my act together created a lot of tension between us. I use the past tense here because I don't know if they believe my diagnosis yet. As I've mentioned, we've had no contact since January 2010, so I don't know what they believe.

In January of that year, my family cut me off, stripped me of any help. I had no gardeners, no driver (I no longer drive). I had nothing. Based on what they wrote me at the time, they seemed to think they could do a little 'tough love,' (like you see on Intervention) and I would agree to get better

I was never not agreeing to get better. Believe me, it's no fun having schizoaffective disorder.

More on this tomorrow, but let me leave you with my opinion that if your family and loved ones already believe your diagnosis, you are that much farther ahead. Because if they believe the diagnosis, they can help.

I'm taking my own advice today and staying positive. I think of all I have lost, and I can get very depressed. At one time I had editors, and housekeepers, free travel, a huge inheritance, my trust funds, and lavish cars. I'd been to the best schools in the country. I had public figure parents and several celebrities in my extended family, some of whom had actually, quite publicly been diagnosed with mental illnesses.

When I compare what I once had to what I now have, I can get depressed. I focus on the past and fail to appreciate the present. Taking my own advice to stay positive, I have: 3 dogs, 7 cats, and 1 bird. Now, some people might not think having so many animals was positive, but I like walking through the house and being followed every time, at least by one of them. My animals are one positive.

Another positive. I no longer have diabetes. I have lost so much weight that my blood sugar is normal. I still take one of the diabetic meds because it can prevent diabetes and because the other meds can cause diabetes, I still take that one, but I am healthier than I was. No diabetes is another positive.

My wife is the third positive. We reconciled 2 years, and so far we are working things out and trying to help each other.

My work is the fourth positive. The schizoaffective disorder has really affected my thinking and my emotions, but it hasn't touched my creativity. I podcast, make music, and blog. I have even sold a couple songs on iTunes.

My memories are the fifth and final positive for today. Although my father and I had a falling out in 2009, that's his issue. He and I have had great, absolutely fantastic times and memories together. And when I focus only on those memories, I can stay positive.

For many reasons, I have had quite a few psychiatrists over the years. My current doctor - who I call Dr. F. - is the one who most recently diagnosed me as having schizoaffective disorder. When I went to see her the second or third time, I brought along five bookshelves' worth of my journals. My diaries. All my written documentation of madness - the faxes and emails that proved that I had 1,000 hours of film that I shot that was stolen. That's it. Can't do anything about it. I have proof of a software development proposal I made when I was 15. Got a scholarship to business school, honors, and recognition. I was like John Nash except I was proposing software, not math, and what I proposed would have been the first online shopping interface. But it got taken away. Like everything. I have the proof, the actual documents. Real. These truths are mine. And I have schizophrenia, and I even have delusions but I know, and my wife knows, and my close friends know, that these are real, not delusions.

I spent 3 years of my life developing a show for A&E Television. I have the proof. I save everything. Faxes to the actual producers… and anyway… My point is that I have lived an incredible life and often, all too often, facts become so-called delusions to others, mostly to the others who actually count, like medical professionals.

It matters to me.

All of this really matters to me. It means something very special to me because it is about me, from my perspective, only my perspective, that's the only perspective I know for sure. It's part of my story, or as some might consider it the “myth of that stupid Jonathan kid.” –I know who I am. And I think I know who my friends are. I know I am a legitimate and loving and grateful, spiritual human being who deserves to be loved and accepted and who deserves to make decisions and to make mistakes, to be forgiven—to be myself. The Real Me. The Jonathan Harnisch who is not alone, who is loved. The Jonathan Harnisch whose moods and behaviors might be a bit difficult to predict. A guy. A citizen, with schizophrenia, a full-spectrum of mental maladies, who believes in some kind of higher power… who believes in himself, who tries, and tries, and tries… who never gives up, or even tries to give up-resiliency. Who struggles every single day as an adult who is still being abused, who has been abandoned and treated like waste-a mistake. Manipulated. Jonathan Harnisch who is a teacher and a student. A rich kid who used to ride up front with his limousine driver. Someone who used to be a real a**hole, often due to his drinking and drugging, and mimicking what he saw growing up in the people who would have done better, but just didn't know how, to protect me.

I have been in therapy since I was 9, and was “put away” on far too many medications since I was 12, some of which I am still physically addicted to, and some which have caused me to gain weight, develop tardive dyskinesia (chronic muscle stiffness) and some of which I was actually allergic to, causing me to rage and even increased my tendency to drink alcohol.

I chose what I did regardless of what the literature suggests, or what certain medical studies indicate.

I am who I am, and I have my own story—my own version of my own story. It changes and adjusts on a constant basis. I’ve been closed up for so long. I am opening up. I am not being inappropriate. I don’t need to be judged. But I will be judged. I don’t need to worry about what others think of me. But I actually do care what other people think of me.

I can’t control other people. Come to think of it, I can’t control what thoughts come into my head and I can’t control which ones leave, so how can I control other people, or their thoughts. On a deeper, or more spiritual level, how can anybody control the galaxy? How about the billions upon billions of existing galaxies and the billions of galaxies that have not even yet been discovered? That is what we are living with—within—at the same time.

Even Jesus, he experienced the full gamut of the human emotion spectrum, having been so-called spirit in human form. He was killed for that, for being who he was—for being honest and sincere, and essentially, for being real. His life was far from easy. The most enlightened beings in the history of mankind—Buddha, Jesus, Mother Teresa, Gandhi, Krishna, and the Dalai Lama—they have struggled and suffered every single day of their lives. And they too, in a way, live within all of us.

I want to let you know that you are not alone. You never, ever will be alone.

I am excited and determined to come to you, who are seeking… seeking something. Maybe you’re just reading as you sit there at work, or maybe you’re my family, checking to see how I am, if I’m “misbehaving.” What I am is a disabled, and yes, very troubled adult. But I am allowed to share my story. My life. I am safe.

Now, I laugh now when I say this, but my wife is 24 years older than me. And if and when she passes away before I do or for any reason leaves me. (I doubt she will. We seem to be doing very well together)… I worry that I will be forced into a psychiatric institution back east, back by my family, when we don’t even talk. I worry it’s inevitable.

I guess in conclusion, my life is full of grandiosity. But I still have schizophrenia, and I still have people who seem to have a need to control me, yet, want nothing to do with me. This fascinates me. Why do they still want that much to do with me?

You are who you are, everyone. Don’t let anyone ever kid you. If anybody tells you, or not—I am telling you and those I love and those who might be considered my enemies, I love you, I forgive you. And thank you. You are beautiful, special, and you are important. Please take my word on that!

Don’t give up the hope. If it slips away, grab back onto it when you can, and relax. Take a break today, and every day. Stay positive and real. Just do the best that you can–mistakes and triumphs. Learn and grow. Inside. You cannot lose what you have right now, and at the same time, only now. Be with yourself. You are a temple, so take care of it. Be well, and stay awake and aware.

Jonathan Harnisch