Silence is Deadly

I find the following entry of my father's agonizingly captivating.  His journal entries serve as a vivid lens by which one can get an idea of what it must be like to live with a major mental illness.  Often, the passages wrench the gut.  You can feel the pain, desperation and fear with each entry.  As his daughter, I often read them with a particularly strong variety of sorrow, yet I feel obligated to do so.  I feel that if he had to endure the pain firsthand, the least I can do is suffer through it in the name of awareness.  Giving readers not just the sense of what it must be like to be schizophrenic, but also to provide humanity to the illness.  He was someone's son, father, brother, uncle, cousin and friend.  He loved and was loved by many in return.  His disease has a face and it was indeed tragic.  While it did not physically take his life, it certainly captured the quality of his life.  He lived each and every day painfully aware of what schizophrenia had stolen from him.

These days everybody and their brother is a victim.  Every family is dysfunctional.  Everybody’s inner child has been violated and wounded.  Criminals are victims of urban stress syndrome and hence not culpable.  Alcoholics are the victims of a disease.  Child abusers were abused as children themselves.  Murderers plead insanity.  White collar criminals are victims of greed.  And on and on it goes. Schizophrenics on the other hand really are victims.  True, classic victims.  They have been struck down in their prime by a disease so unspeakably insidious that it rarely comes up in comes up in casual conversation.  Most people don’t know much about schizophrenia, and for the most part are content to remain in ignorance.  The stigma about mental illness is so pervasive because everybody has wondered about their sanity at one time or another and nobody wants to talk about it.  Thinking it a weakness of character.  But unlike neurosis, which afflicts virtually everyone, and is merely a conflict of ideas, schizophrenia is a biological disease of the brain.  Consequently, schizophrenics are victims, real victims.   Just as much as a person who is a victim of diabetes or cancer.  Yet schizophrenics do not spend a lot of time trying to gain sympathy from others.  Generally, they try to hide their disease.  They are embarrassed and ashamed and only want to pass for normal by concealing their affliction from the prying of the mentally healthy.  There is a great deal of denial among schizophrenics about their disease because it is so misunderstood by the preponderance of the healthy population.  No one wants to be a lunatic.  The mentally ill, except possibly to their families, are the objects of derision and fear.  Or else they are regarded, to put it blandly, peculiar and subject to curiosity.  This is only as long as a sufficient distance is maintained to prevent actually sharing in the frustration and pain of the scourged.  The tears of bitterness are best shed in private.   We have become a culture of comedy and it is surpassingly difficult to find much funny about insanity.  In the movies the mentally ill are often depicted as harmless comic idiots.  This is a far cry from the real picture of schizophrenics’ who are routinely incapacitated by their disease and who have great trouble in finding the humor in their delusions and hallucinations.  As much as we would like it to be otherwise, insanity is deadly serious business.  A patient can’t just laugh off the malaise that afflicts him or her.  There is nothing very funny, for instance, of hearing voices telling you to kill your infant daughter because she is of the devil.  I was in the hospital with a man who did just this, and he wasn’t laughing about it.  Out of the respect of mutual hardship often displayed by mental patients for each other, no one teased this unfortunate man about his undoing either.  We all knew how easily it could have been one of us.  I met this man in a public psychiatric facility that accepted patients regardless of their ability to pay.  It was a kind of warehouse of patients who had nowhere else to go.  This man was pointed out to me by another patient, who I sensed was relieved that there was someone on earth who had it harder than he did.  I was not so comforted.  My second daughter had been born only three months prior to this hospitalization.  I tried to imagine how I would feel, how I would always feel, if desperately ill, I had done just what this man had done. My self-control was gone when I was committed.  I was capable of anything.  I grew morose just thinking about it.  I felt a compassion for this man of such profound depth that even in my wretched state, when I would have traded places with virtually anyone, I knew I would not want to trade places with this man.  The things I was having trouble living with paled in comparison and I was thanking my lucky stars I had been spared such a fate.  My youngest daughter, who had just been born, is twelve now.  Healthy, happy and full of life.  To think, to just stop for a moment and think the unthinkable I am filled with fear and dread.  There is no cure for schizophrenia, which means that at any time, I could again find myself thinking the unthinkable.  I am frighteningly vulnerable to the vagaries of my disease.  At any time I could start howling at the moon.  Security is an illusion enjoyed at the expense of prudence.  If I had lost my grip for even a second.  I know what would have happened.  I would not be able to live with myself.    

The Legacy We Leave

When my father was dying there was a constant theme of concern.  The concern that he had left no impact on this world.  That it wouldn't matter to anyone when he was gone.  That his disease, schizophrenia, had striped away any and all opportunities to contribute to society.  This was heartbreaking.  I spent so many nights whispering into his ear the things that he should and could be proud of.  It felt as though he just couldn't let go towards the end because this wasn't resolved.

I knew then that I could not let my Dad's story die with him.  I made a promise to him and to myself that I would use his story to make a difference.  I hope I can do that in many ways; by sharing our story, by advocating for those with mental illness, by working to break the stigma and by creating the memorial fund that will serve children with mental illness.  This will be my father's mark on the world and I trust he will know.

I am not a religious person, but I am spiritual.  I feel his presence when I run, so I keep running.  I never ran before Dad passed away.  It was as though something came over me.  He would give anything to be alive of sound body and mind so he could run marathons and enjoy life.  I felt I should no longer take my sound mind and body for granted.

Life seems shorter than it ever has before.  My Dad was gone, the first major loss of my lifetime.  I don't want to waste time anymore saying, "I will do that someday".  So, now I seize the moment.  So many people I love have been touched by major mental illness.  As we now know, it runs in families, so this doesn't come as much of surprise.  Mental Illness is a genetic, organic disorder of the brain.  I hope to spend my life sharing my story and advocating for a cause very dear to me.

This week is Mental Illness Awareness Week.  I am doing a fundraiser for the memorial fund serving children with mental illness.  $10 on October 10th!   Follow the link to make a donation and a difference in the lives of children with mental illness.  Tell your friends, family and co-workers.  A lot of people making small gestures of love can have a huge impact.  Please join me!  This is an ongoing fundraiser, so if you find us after the 10th and still want to spread some love...it will be much appreciated.

https://www.crowdrise.com/-blainegoffmemorialfund 

The Early Years

Especially in the early years of my Dad’s diagnosis it would be unlikely that one could pick him out of a lineup as being Schizophrenic or even mentally ill of any variety.  He was handsome and well-kept with hair combed, teeth brushed, clean clothing, and a fit athletic build.  The remnants of his athletic days as a marathon runner, boxer and rock climber still visible in his build.  He was a husband.  He was a father.  However, keeping up this facade of normalcy was extremely trying in social situations and at work.  It took all he could muster to appear “normal”.  It was in these years that I did not see my father much, I wasn't able to.  He was too sick.  Mom took me with her one time to visit him in the hospital, but the crying and screaming that ensued as she left with me was more than she thought I could handle, more than she could bear and perhaps more than he should have to endure as well.  She would never take me to the hospital to visit him after that.  Luckily, I have no recollection of his despair and the heartbreak my exit caused.  

My grandmother, in what I assume was an effort to describe my father’s love for me, would tell me about times early in his diagnosis when he was living at home with his mom and dad.   She described listening to him scream and cry my name over and over as he tried to fall asleep at night.  This was a ritual that continued for some time and tore my grandmother’s heart into pieces.  She didn't tell me this until I was in my teenage years and I would suppose some might feel she shouldn't have shared it.  I, on the other hand, am very glad she did.  Long after my Dad’s affect had become flat and his show of emotion few and far between, I had this to cling to.  This knowledge that he loved me deeply before his illness stripped him of the depth of emotion he once possessed.  I clang to this.  My Daddy loved me, loved me so deeply he hurt.  Not yet understanding the love between a parent and their child I had questioned his love for me often.  This story of my grandmother’s played in my head, illuminating the depths of his love when I was in doubt.

I reluctantly agreed to commit myself.  Naturally I hated being locked up, and wanted out, but I did not attempt to sign myself out because I didn’t want to risk being committed involuntarily.  I was hospitalized for three weeks and miraculously went into spontaneous remission without medication.  But when I got out, I will tell you, I was sore and feeling abused.  It was to be another year before my second commitment, this time to a welfare hospital.  Slowly but surely my resistance was being eroded.  My second commitment was not as traumatic as the first.  I still procrastinated about going in, but eventually did go.  This time I was stabilized on Navane and released in three weeks, which is what they figure it takes for the medication to work.  While I was in, being completely miserable, I did try to sign myself out. As a result the doctor’s got a hold order and I was committed involuntarily at a hearing before a judge. I had visions of being warehoused in a back ward somewhere.  I was as scared as I was mad.  I questioned whether I would ever get out.  Fortunately, the medication worked like a charm, and like I said, I was out in three weeks.  If I had kept taking my meds once I got out, I probably would have never seen the inside of another psyche hospital.  Unfortunately, this was not my fate.  Within a year, this time far from home, I was hospitalized a third time.  My condition was chronic and the symptoms were more intense than ever.  I despaired I would never recover.  While I was in Austin State Hospital I got my hands on a piece of broken glass and proceeded to lacerate my feet in five or six places.  This succeeded in getting me off the ward for a few hours in medical, but I was put right back in stir, only now with an attendant with me at all times on suicide watch.  This lasted for a day and provided me with ample reason not to make a second attempt.  I became a model patient after that in order to get discharged.  About the same time I started to stabilize on Mellaril this time, so I was not so desperately ill.  I was released like clockwork in three weeks.  As bad as this hospitalization had been, and as much as I didn’t want to repeat the experience in the future, feeling fine within a month, I again quit taking the Mellaril.  Just about a year later I was again whacko, this time there was a different approach to my recovery.  I was put in a residential facility in the community where I was put back on Navane, and here I stayed for three months.  This was 1984 and I have been taking medication ever since.  Interestingly, after three years, I was still in denial.  I still thought my life was being monitored, but now I was convinced that what I was supposed to do, what this was all about, was taking the medication.  My resolve to take the medicine was not a rational decision on my part.  Instead, still paranoid, my delusions led me to believe that taking the Navane was the key that would deliver me.  And I would have stayed out of the hospital if it had not been for my drinking and drugging. 

Losing it All

"Madness comes in many colors. Each as individual as the victim. Schizophrenia is tailored to the individual patient. Some prefer to wear it loosely, others a bit more snugly. When first presented with this suit, all universally recoil. In the nascent state, denial tends to be the initial reaction. Only with time does one resign oneself to his or her fate. There is a mixture of grief over the loss of one’s mind, and a slow coming to terms with one’s new role as a freak. Fifty years ago I would have been locked naked in a cage. Even though I can still walk the streets by taking the correct chemicals, and a body can’t pick me out of a crowd, I am still statistically someone who has more in common with the features in a circus sideshow than with the average guy on the loose. Insanity by nature is pretty humorless."

Schizophrenia had taken everything that ever meant anything to him. His wife, his daughter, his home, his pending career and his sanity. We had no family history up until this point of major mental illness. Everyone was treading in new, murky waters. My grandfather, an emotionally controlled high-ranking Iowa State Patrolman was angry and devastated. He didn't know what to make of Dad’s illness. Back then, I am not even sure he really believed it was an illness. He was more disappointed in Dad than in his diagnosis. My grandmother’s heart ached for her son, as most mothers, she was tortured watching her son writhe around in misery without being able to do a thing to fix it. The delusions crept in slowly, eventually picking up pace and becoming both more vivid and more frequent. He believed that people were watching him, clinging and dissecting every single thought that raced through his brain. He became livid and paranoid at the thought of this. He began to feel that the delusions were references involving every aspect of his private life. Dad was convinced that some organization had access through audio or visual medium to everything he said or did. He believed he was being monitored by satellite and the sound captured was being transmitted to tiny listening devices placed under the ears of “subscribers”. He believed the whole world was in on this…with the exception of China. He didn’t believe them to be interested. These delusions then led to his belief that people were reading his mind and broadcasting his every thought. I simply cannot imagine the tortuous agony one would feel if it felt like you were always “on” with people knowing each and every one of your most inner thoughts. He felt and continued to feel throughout the progression of his disease that his psychosis, his break from reality, was simulated by others and wasn’t psychosis at all. Dad wracked his brain for why this was happening to him. Was it his experimentation with drugs? Was he a bad person? Karma? What should he have done differently? He quickly dismissed these ideas feeling that if skeletons in the closet caused mental illness, we would all be crazy.

 My father and I frequently conversed about the speculation of family and friends that his experimentation with drugs and alcohol during high school and college was the precipitating event to his becoming schizophrenic. He discussed this at length with many doctors who were of the opinion that if drugs did play a part his diagnosis would be different. At that time anyway it would have been labeled something like “organic delusional disorder” and would not have responded to medication. Since he did respond favorably to neuroleptic medication the overwhelming conclusion was that he was a “true” schizophrenic. At the very most, the drugs could have triggered a genetic predisposition for the disorder that might not have otherwise expressed itself. If drugs and alcohol alone caused schizophrenia, there would have been a schizophrenia epidemic in the 70’s. I have always rejected this idea, feeling it was just another way to blame someone for their mental illness. Whether that is right or wrong we will never know. What was known was that alcohol and drugs were far too aggravating for the disorder and his prognosis would be poor if he continued to use. For years after Dad got on medication, and stayed on it, he continued to drink alcohol heavily, smoke pot and occasionally use cocaine. While these activities only work against the mental hygiene of an individual with a major mental illness it is not uncommon that people will attempt to “self-medicate” with alcohol and street drugs. He got away with this, relatively speaking, for about five years until one day in 1989 when the world came crashing down around him. I would have been 10 years old at the time of this particular break. My communication and relationship with Dad for the previous decade had been inconsistent at best. He became psychotic virtually overnight and went inpatient to try and stabilize. He was there for three weeks, totally psychotic the whole time. The doctors at the time made the decision to reduce his medication, one that he wasn’t too supportive of. That is indeed the tricky part of psychiatric medication, too much or too little can have damning effects. Finding the right cocktail can take months or even years. When they let him out of treatment he was still psychotic and remained so for two painfully long years. These are what Dad referred to as the “dark years”. It was during this time that he committed absurd acts of violence; such as beating a police car to a pulp and pulling a gun on his second wife and attempting to take his own life numerous times. He had visions of killing his parents and ex-wives; he felt they were all to blame. They were all in on this sick joke. He was able, very thankfully, to control these impulses reminding himself at every moment that it couldn't be real though it felt excruciatingly real.

 These were the years before Clozaril came out as an experimental medication; with limited release and tight controls. He was lucky to be selected to participate in the trial as this was the medication that would prove to have the best efficacy, but it was to be years before it would become available.

"Once you have lost your mind you realize that you have nothing left to lose. The quest then begins. You take the bad with the good, steadily steering a course through the shoals toward the setting sun. Then the night comes. And it is then, in the dark night of the soul, that you chart your course by the stars. You take it on faith, floating forward, that you will reach your destination."

The Journal Entries

Paranoid schizophrenia has often been seen as the red headed step child of all mental illnesses. The unthinkable. The most feared. Something to surely keep your distance from. Historically, schizophrenia has been rather treatment resistant and the quality of life of the afflicted was usually poor. Only fifty years prior to my father’s diagnosis he would have been chained to a wall in an institution. A reality that was never lost on him. My father always said that sane people haven’t the slightest clue of what it feels like to not be able to depend on one’s own mind, one’s judgment. He had been a college student with just under a semester left to secure his Bachelors in Education, so he could seek out a career as an English teacher. He loved to write and was damn good at it. There is no doubt it was his calling. Little did he know this very career path he sought and talent he possessed would serve as his lifeline, his primary therapeutic escape from insanity. With the onset of his illness he switched from fiction to journaling. His first consistent entries being entered in 1981. As life progressed he had a strong desire to share his writing, his story. He wanted to get published, but didn't have the executive functioning necessary to organize his writing into something printable. When he passed away in April I inherited his entire collection of journals with almost daily entries from 1981-2014. They chronicle his journey upon initial diagnosis through the end of his life. It truly is a window into an agonizing fight with schizophrenia. My father's writing will always appear on this blog in bold italic to differentiate from my own.

I remember my irritation with people inquiring after my well-being when I was not feeling well. If, innocently enough, I was asked how I was doing, I would snap back, “You know how I am doing, not worth a shit.” Since I believed that my mind was being read, I did not see the necessity in telling anybody anything. My life had been reduced to playing a sick game. I felt I was dying of exposure. Not physical exposure, but I felt like I was turned inside out. That I had no privacy, even the sanctity of my mind was violated, and I felt I had gone public. I was, by turns, humiliated, embarrassed, impatient, and contemptuous. I was alternately frustrated and angry. It made me mad when other people were trying to understand what was going on with me when I was confused and didn’t know myself. Let alone to be expected to communicate my twisted vision. I knew that to try and explain would make me sound crazy and only invite consternation from my people. Being a very proud young man, it did not sit well with me to be freaking out. I had always prided myself in having my stuff together. Now, here I was talking rubbish, or what sounded like rubbish. To me, I felt lucid, but in the absence of proof for my allegations, I felt helpless and frustrated. Enough frustration engenders aggression. So, at one point, at my wits end, I hauled off and punched a hole through a closet door. I knew that I was losing control. A day later I was in the hospital for the first time. I was verbally abusive, bellicose and determined to get to the bottom of this “conspiracy of them”. I didn’t know who “they” were, but I “knew” they existed. I have no privacy in what I think, say or do. The only thing I don’t share is the pain. The pain is private. Nobody, at least so far, can feel the pain of another.

Hello Friends

I am a person in a unique situation, though I know there are others like me who exist, I have yet to meet them. I grew up in a nice middle class family in the suburbs. Never wanted for anything. I came from a "good" family AND my biological father was a paranoid schizophrenic. Very rarely do people associate the white picket fence suburbia with one of the most feared mental illnesses. However, that was my reality. I was raised by my mother and wonderful step dad, who eventually adopted me. My father was always in my life, but it was dependent on his current mental state. I ached for him my entire life. My father had his first psychotic break when I was about one year old. I never knew him before he became sick. This is a grieving process by which I am still moving through despite his recent physical passing. So, I am left to grieve the man before schizophrenia and the man after schizophrenia. The man I never met was a marathon runner, boxer, college student, brilliant writer, doting father and fun friend. The father I knew was loving, but paranoid. Strong, but vulnerable. Smart, but confused. Years of psychotic breaks, psychiatric hospitals, self medicating and psychotropic drugs had left him a shell of the man he once was. To manage his illness and stay sober he needed to be devoid of emotion. This is not to say he didn't feel anything, but it was a dangerous tightrope for him to walk if he were ever to get too happy or too sad. When you cease to be able to experience the extremes of emotion, it takes from you the experience of life. My father's illness had and continues to have a huge impact on my life. Society taught me that I should be ashamed of my father and his illness. It should be kept a secret and certainly didn't fall in the category of "nice" dinner conversation. I grew up believing this was something I shouldn't talk about and certainly shouldn't be proud of. The stigma that my father felt, that I felt all of my life is something I seek to break. As I entered adulthood I stopped feeling ashamed and started feeling proud of who my father was and what he was able to navigate under the circumstances. He had over 20 years of sobriety, an incredibly hard thing for any alcoholic to do, let alone a schizophrenic alcoholic. Something to be revered and celebrated. He lived independently with minimal hospitalizations. When he did go into the hospital it was typically because he recognized the slippage and admitted himself. Commendable. He learned to live on his poverty SSDI wage of $1100 per month without getting into major financial difficulty or utilizing other public benefits. Praiseworthy. He maintained grip on his sanity each and every day despite the persistent delusions that medication could not quiet. Laudable. This lens through which I see my father, is not the same lens utilized for the majority of Americans. They see weakness. If you cannot see a disorder in our society than it must not exist. If you can't prove it with a blood test, then it must not exist. However, we have a large body of scientific evidence that validates major mental illnesses such as schizophrenia or bipolar disorder. It is well known by the medical community that these are organic brain disorders with a strong genetic component. It is time to stop blaming people who have a mental illness for their disorder. There are children and families suffering in isolation and sadness because they know if they come into the light there will be judgement and blame. I want to tell my story, so people know they are not alone. It is not a character flaw to have a mental illness, just as it isn't a defect to be the child or family member of someone with a mental health diagnosis. Our system is broken and people are hurting.

Blaine Goff Memorial Fund for Children with Mental Illness

Fundraising Websites - Crowdrise