Personal Stories

I was once a vital, living, breathing, creating human being. I am someone with an identity and dignity who wanted only to live normally again.  Ryan Woodland, age 24.

I drew back in shock at the doctors’ diagnosis. Mental illness? Isn’t that the affliction of homeless men on street corners?  Not understanding the implications, I was actually grateful there was a name for Ryan’s sad, strange behavior and arrested development. Schizophrenia with anxiety disorder or was it delusional disorder with obsessive compulsive tendencies? Doctors were not sure, but just knowing it was something called mental illness gave me hope there would be an answer.

Looking back, I clearly see evidence of the battle he waged against the nonstop negative thoughts that became a prison for his mind and emotions. The blinders I wore were only because of my naiveté about the nature of mental illness.

The road to full-blown mental illness is always paved with other symptoms. Symptoms like social anxiety, self-doubt, thoughts of not fitting in, etc. are always present. Alone, they do not indicate severe mental illness. But they are always present if the illness takes its prescribed path.                                                                                        

Ryan’s life as a young teen included the usual teenage angst: worries about fitting in, girls and dating—how expensive it was to take a girl on a date, issues about body image, school work and making decisions about where to go to college. Most teens survive the discomfort of navigating the adult world while in their changing bodies. 

However for Ryan, these feelings of self-doubt seemed to increase with the passing of years.  His sensitive nature caused him more pain and angst than his peers, but I loved that he had empathy for others suffering and sought meaning in life’s experiences. But these were character traits, not symptoms of mental illness.      

Getting through high school proved a challenge, and his father Gary and I wondered if he would graduate.  His desire to succeed academically had disappeared. But I chose to believe him when he explained, “School just doesn’t speak to me anymore. I like to work with my hands.” So, in his final year of high school he took double periods of shop and auto mechanics, rather than AP algebra and a Great Books seminar.

In addition to the lack of motivation for school, he was no longer involved with sports, music or extracurricular activities. All because he began to believe he was going deaf. This was the delusion that was to eventually end his life. So, despite doctors’ evidence to the contrary, he would go nowhere he felt might further deteriorate his hearing. Movies, dinner with friends, or other social activities had been cut out of his young adult life.  Bit by insidious bit his world was growing ever smaller.

After barely graduating from high school he worked for a time at the grocery store nearby. Plans to become an engineer had died long ago and he was unable to resurrect them. Although he never expressed sadness over this decision, I sensed that he mourned the loss of the life he felt unable to achieve. His family mourned too.

Could you just learn a trade then? After much cajoling, he decided to attend auto mechanics school in Arizona. Gary and I, and sister Michelle were happy. The grief we could not articulate and the confusion we all felt had drained us, and this seemed to be a small light on the path.

Maybe things would work out after all. It wasn’t the best plan, but it was a plan and maybe now his life would move forward.

His education in Arizona didn’t last for long. He was under tremendous pressure from attending school full time, working part time and driving home each weekend. The drive between Albuquerque and Phoenix was eight hours each way and sometimes he drove all night just to make it back to school on time. I wondered why he felt such compulsion to come home on weekends, but I was always happy to see him, so I buried my concerns. Even it made no sense that he returned home so often. Growing up is hard work. Ryan just needs more time, I said to my husband as we struggled to believe an argument that was becoming less convincing.

Ryan said he was unable to work in the school’s garage because the hydraulic tools were too loud for his ears, even with ear protection. To his mind, quitting school was a logical choice. “Mom, I can still repair cars and make a living that way.” He tried to sound reassuring. I swallowed the lump in my throat and gave him the benefit of the doubt once again. He was after all only nineteen years old. But to me it was another way his life was shrinking and I felt powerless to help. Since there was no logical, medical reason for this kind of thinking, I bowed my head and cried.

Returning home, the obsession with his hearing would not allow him to spend time with friends. Although he missed them, he was unable to hang out because of the fear that gripped him if music played too loudly. As much as they cared for him, they got tired of his continuous refusals. He became a hermit. My heart was breaking because I thought his prison was self-made. Was I babying him, not allowing him to grow up? Something was wrong, but what was it? These were questions for which I could find no answers.

He occupied himself with car auctions, car manuals and lots of alone time. He did manage to make a small amount of money, but not really enough to live on independently. It was just existence. Sadly, we got used to the fact. I pushed the nagging thoughts away and hoped that maybe if he got his own apartment things would work out.

But, it was not to be because an event occurred that precipitated a series of events that changed his life and ours forever. On this day, I found him pacing up and down, mumbling to himself about driving off a cliff to end the turmoil of going deaf. Every five minutes he checked his level of hearing using a home audiogram system. He then applied a homemade laser that he believed would heal the deafness he perceived. I say perceived because every test he performed showed his hearing within normal range. Audiologists had performed many hearing tests with the same results, but Ryan could never accept any assessment as valid that showed his hearing as normal. He couldn’t understand the discrepancy and blamed the results on faulty equipment.

I was frightened by this bizarre behavior. Ryan, wait here. I am going to talk with Shirley. She might know how to help us. I tried to sound calm but sobbed all the way to her house. I knew that Shirley had a son with schizophrenia. Tears rolled down her cheeks as I described Ryan’s behavior. “You have to take him right away to a doctor…right away.” Numbly, I followed her instructions. I was lost and felt so alone. If I was terrified at what was happening, what must Ryan be experiencing?

The entire day residents came in and out of the cramped psychiatric emergency room. It was surreal to be in a part of the hospital that I thought was only for the insane, not my son. I held my breath as Ryan paced from one corner to the next. “No, I will not have an MRI. Are you kidding?  Do you know how loud that is?  I just need help for this crazy hearing problem.” His frustration with not understanding his own thoughts or the somatic sensations were becoming a burden too heavy to bear.

Ryan was hospitalized for three days. Three days to treat and get under control symptoms that had controlled his every move for years. Symptoms that had become so powerful it was like someone else occupied his body.  He was frantic with anxiety the entire nine months of his treatment. The drugs seemed to work at first, which is fairly typical. His anxiety decreased and he felt some small hope for the future, but this was short-lived because the medication stopped providing any sense of calm for him. He complained of the drugs not working anymore, but doctors were hesitant to add additional milligrams. He felt his life was rapidly slipping away. Time is often against families who try to navigate the treacherous maze of mental illness supports hoping to arrive to a place where a medicine or combination of medicines and therapy might offer some relief for the symptoms.

What is it like to live with a broken brain? “A person walking through normal life, with a loving family and friends, with plans for the future, suddenly encounters something awful. Slowly, seductively you become captive of a brain that won’t let you connect anymore to the outside world.  What is there in any person’s experience to prepare them to cope with a broken brain?  Who can understand what a catastrophe this break is for the human soul?” says Dr. Nancy Andreasen, in the Broken Brain. The connections that Ryan once had were slowly lost to him. He said how he used to love helping people, but now the total preoccupation with his ears would not allow him to do so. He suffered the isolation and loneliness, as well as the sense that he was not normal.  How can a parent or psychiatrist understand the torture such a person is going through?  Dr. Andreasen continues, “People with schizophrenia are locked out of the outside world, and locked inside their head with nothing but these out-of-control thoughts. What is broken is also the brain’s ability to process emotions.” The emotions that had once allowed Ryan to connect with family and friends could no longer be expressed because the delusion had become his reality.    

Ryan did not give his family the gift of time. His journals tell of the painful decision to end his life. He was locked in a mind that had taken on a life of its own.  He wanted to spare us more pain because, as he said, “I know it hurts you that I am not normal.”  He fought so hard to be normal. I ask myself now, what is normal?

Schizophrenia is an illness that strikes young men and women in the prime of their lives and is a detour of their dreams. It forces families to live differently. Endurance is required as well as a readjustment of expectations. Before his death I viewed mental illness only through the lens of my own lack of understanding. Even though my hopes and dreams for him had been shipwrecked, I still had hope that he could be free again. I didn’t fully understand its biochemical nature much like diabetes, cancer or any other physical illness. It is not a weakness or lack of character, but an illness that requires treatment, and shows itself in thinking, emotions, and manifested delusions. The images and stigma of this illness make it difficult to accept. Ryan never did. It is only with the passing of time that I have learned to accept it.

So many things in life cannot be changed. I cannot change the fact that my son had a predisposition for mental illness and it manifested in his life. I cannot change the fact that I didn’t know the way to help him. I cannot change that his response was to take his own life. I can only choose not to waste his suffering. I will preserve his dignity by speaking out for others who also endure on behalf of their mentally ill loved ones.

Take up your cross, and go the thorn way.

And if a sponge of vinegar be passed you on a spear,

Take that too, souls are made of endurance.

God knows. 

Carl Sandburg (from an unpublished piece from a notebook of 1902 and reprinted in Souls Are Made of Endurance by Stewart D. Govig, 1994)

 

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