Life of Normalcy or Life of Chaos

Four years ago I found myself on a locked psychiatric ward.  A lawyer for six years, as well as a person with schizophrenia, I had previously defined myself in part by my absence from such wards:  in the fifteen years of my illness, I had been hospitalized only once in the past for a neurological workup.

I was on the ward to try out an investigational antipsychotic.   I had come to the end of conventional medication choices.  On Mellaril, one of the traditional antipsychotics, I had developed tardive dyskinesia ("TD"), the painful, disfiguring, involuntary movement disorder that is a common side effect of such treatment.  Any further use of the neuroleptics risked causing permanent TD.  As for the two atypical antipsychotics then available, I had a toxic reaction to small amounts of Risperdal and had developed agranular cytosis (a potentially fatal drop in white blood cells) on Clozaril.

Electing to join the study had not been an easy choice.   Participants in investigational drug trials risk developing previously unknown side effects.  As of this writing, four years after my stay on the ward, the drug I tested has not yet been commercially released due to allegations of such potentially fatal side effects.  And the ward itself was full of those whose lives had gone awry, a situation that fed my own fears about my economic future.

But I would remain on the ward for the full nine weeks of the in-patient portion of the study and in the outpatient portion of the study for a year beyond that.  The fear that brought me there was stronger than the fears that might drive me away.  I had tried to live without medication for several weeks before the study.  For me, appropriate medication means the difference between living an independent and personally meaningful life -- at that time including professional work -- and experiencing utter chaos.

This was my life that fall without appropriate medication.  I could not read with comprehension.  Each individual word made sense, but I could not form the idea behind a sentence, much less the pattern of a paragraph.  My own thoughts moved sluggishly, forcing me to pause before answering even simple questions ("speech delay") and to miss the meaning of even the evening news.  For someone who enjoyed the practice of law, such derailed thought was a terror:  it put my job immediately at risk, and led me to apply to the drug study.

Daily life was no better.  I suffered from geographic disorientation, meaning that I could not even successfully locate the grocery store where I had shopped for eight years, located only a few blocks from my apartment.  Within my aprtment, I spent hours curled in a ball as the auditory hallucinations (and some visual ones) came and went.  I was too frightened to manage normal social contact with adult friends and with the young niece whom I had cared for regularly since her birth.  The latter noted my tendency to shut my eyes often against an hallucination and punched me in frustration, "Susan, don't sleep!  Susan, it's not night-time yet!"  Our usual easy camaraderie, one of the joys of my life, was lost.

One night stuck out in my memory whenever I later doubted my decision to join the study.  When unmedicated, I suffer from agitation.  It had been building for several days.  I do not know when I had last slept.  I tore off all my clothes and ran around and around my apartment, unable to sit or lie still.   It was three in the morning, but I had a desperate need to rush out in the street.   I only managed to avoid this by purchasing oblivion, taking several hundred milligrams of Clozaril, though I knew Clozaril was potentially deadly for me as it is for anyone who had once developed agranular cytosis.

It is four years now since that night.  The first investigational drug and two others bought  me two additional years as a lawyer before my illness advanced to the point that made further paid work, at least temporarily, impossible.  These drugs also came to cause mild TD, as would Zyprexa, the drug I currently employ.  As I write this, I live most of the time with some mild TD.   Sometimes my tongue moves within my mouth against my teeth for days or weeks until I wear the surface of my tongue painfully raw.  Occasionally, the muscles of my face bunch asymetrically.  Sometimes the TD ceases.  I live with the fear that it will someday advance.  I cannot use as high a dose of Zyprexa as I and my doctor would sometimes like.

But two years ago, I faced a much harder choice.  I had again been treated with Mellaril after the completion of the second drug study.  My doctor then switched me to Zyprexa as soon as it became commercially available.  Zyprexa controlled my symptoms well, but I immediately developed TD that involved grotesque tongue movements outside my mouth.  We then immediately terminated the Zyprexa, and I was tried on a third experimental drug.  The TD subsided somewhat, but the experimental drug had no effect on my symptoms at all.  I was back to the chaos of that earlier fall.  Eventually, I had to decide whether or not to try Zyprexa again, since it was clear I could not hope to live independently without control over my symptoms.  I also could not hope to relate to family or friends.  My friends, polled, indicated that they had rather talk with someone visually distracting than suffering from the cognitive dullness my illness imposed when untreated.  After much thought, I decided that the TD would be less burdensome than chaos and social isolation.  I took the Zyprexa.  Mercifully, the moderate TD did not return, having been caused, a second opinion suggested, by the combination of the residual Mellaril in my blood with the Zyprexa.  But in the future, I may sometime have to stand by my decision.

I recently represented my sister and her husband at Parents' Day at my niece's kindergarten and was presented by my niece to her teachers with pride as her special relative.  It is in moments like this that I am grateful for medication.

General Resources / Legal Resources / Medical Resources / Briefing Papers / State Activity    
Hospital Closures / Preventable Tragedies / Press Room / Search Our Site