A Doctors Journal: One Man’s Search for Meaning
The door was open to the exam room and inside I saw a 6 ft 2 in tall white man pacing back and forth. His face was covered with sweat. His mouth contorted like a Cheshire cat as he spoke in short jerking cadences. He had involuntary eye blinking and acted like his neck muscles were too tight. And, he had difficulty in speaking and breathing. I immediately wanted to know more about him.
I soon learned that his name was Ted and he was there to check his blood pressure. He explained that the reason he thrust his left arm into the air repeatedly as he spoke was to help him speak more clearly. He said he knew people find it hard to understand him.
I also learned that he had a long history of not taking his psychiatric pills because of a great distrust in psychiatric medications in general. His medical record included a history of paranoid schizophrenia, depression, obsessive-compulsive disorder, and tardive dyskinesia (TD). As he left the office, he asked me if researchers had found a cure for TD yet. I told him I did not think so, but I would try to see if there was anything new in the literature.
Learning About Ted
Over the course of the next several visits, I learned that Ted was not always like this. With great difficulty, Ted told me of graduating from high school with a “B” average and going to college where he graduated (with honors) in history. He liked volunteering where he helped high school dropouts get their GED, and soon after, he went on to earn 2 master’s degrees, including a Master of Social Work. He worked as a social worker for several years until his life began to spin out of control.
Several years later, while living largely out of his car, he was arrested for theft, trespassing, assault and battery, and malicious destruction of property after an angry outburst while trying to pay a late charge for oversleeping in a hotel. He spent 40 days in a county detention center and had his car impounded. This was followed by another stay at the detention center for threatening a judge over the phone. As Ted explained it, “I was just angry and blew off steam.”
Ted’s father influenced the judge to find him not guilty by reason of insanity, and this was followed by his first commitment at a state psychiatric hospital. He was awarded a 3-year conditional release as long as he took all of his prescribed medications, which included powerful antipsychotics like thorazine. A pattern of not taking his oral psychiatric medications would soon start and continue throughout his life.
Ted continued to go in and out different group homes, interrupted only by stays at psychiatric institutionalizations where he was ordered to take major tranquilizers. Because of his history of refusing oral medications and noncompliance, his doctors escalated his therapy to monthly injections of fluphenazine. This led to Ted acquiring TD, a disorder he was at-risk for due to prolonged exposure to antipsychotics—especially a depot, high potency, first-generation agent—at his older age. Neuroleptics, such as fluphenazine, not only display increased liability to cause TD, but can also paradoxically mask TD so that involuntary movements are not evident until discontinuation of the drug—a condition known as withdrawal-emergent dyskinesias.
Ted disputes that he suffers from schizophrenia. “I don’t believe this. I decompensate when something is stolen or lost, or I am violated. I get agitated and depressed.” He notes that he has never heard voices, never had suicidal or homicidal ideation, and denies gambling, drinking, or the use of drugs or cigarettes.
An Empty Void
Ted’s tragedies would not stay behind him. His father died of a heart attack when Ted was 35 years old. His mother, whom he deeply loved, continued to support and care for him, and Ted found pleasure in spending time with her. With saliva involuntarily falling from the left side of his mouth, in between gasps for air, and with his left hand raised as if he was waiting to be called upon, he told me that for 2.5 years (1996-1998), he stayed in bed around the clock, only getting up to meet his mother on Saturdays. She would take him out to local restaurants and buy him any necessities he needed.
Before she succumbed to cancer 12 years ago, she had found him an apartment where he would live for the next 5 years. When his mother died, he became the recipient of a small trust fund that she set up to help him. This, along with his monthly social security income and medical assistance, makes it a little easier for him to get by, but he notes that he does not live comfortably.
For a while Ted seemed to be succeeding. He volunteered doing clerical work for the Alliance of the Mental Ill, completed a case management-training program, and attended a transitional psychiatric day program. He enjoyed visiting his out-of-state brother and sister, and saw it as a break from his regular routine. But the TD raged on. He would soon stop driving but tried to continue volunteering his services wherever possible.
He longs for contact with people. With an apathetic face and tremulous right hand secondary to the parkinsonian side effects of antipsychotic medications, he told me of having no wife, girlfriend, or children. One day I saw Ted at a local coffee shop. He was sitting in the corner, relaxed, eyes closed in an overstuffed chair. I had never seen him so peaceful and thought to myself that perhaps he is at only at peace when he sleeps. I decided to say hello and after chatting for a few minutes, he thanked me for stopping by.
Overcoming Challenges and Finding Hope
As if his mental and physical problems were not enough, Ted, like many who live in an inner city, also suffers from the stress that comes from fear for his own safety. His apartment has been vandalized 5 times over a course of 4 years. He has been verbally threatened with physical harm and is repeatedly taunted by groups of teenagers who laugh at the difficulties he has with talking or breathing. He has been pelted with rocks and stones as he walked on his sidewalk, been shot in the face with a BB gun while using a pay phone, and robbed at gunpoint 6 times over a course of 13 years.
The Austrian psychiatrist Viktor Emil Frankl (1905-1997) was held prisoner during World War II at the Theresienstadt concentration camp. He wondered why some living under such terrible physical and emotional conditions survived and others seemed to quickly succumb to their torture. In his book, Man’s Search for Meaning, he offers an explanation: Those who survived share a commonality of having found meaning in their life—they were living for someone, for some cause, or had come to understand the meaning behind their suffering. This made me think of Ted and how he also has suffered terribly, yet has seemingly found meaning in his life.
When I asked Ted what his sources of hope were, he almost seemed surprised by the question and hesitated before saying, “I don’t want to die. I take each day as it comes.” He went on to explain that he is not religious and does not believe in a higher power, and although raised Jewish, does not identify himself with that religion. “I believe in a better world. A world that can get better. I’ve seen it’s gotten better—a little better.”
Despite having many reasons to be negative, Ted always has a positive outlook on life. He told me his sources of pleasure include food, good-looking women, visits with his brother and sister, and volunteer work. He believes in supporting patients’ rights, and has volunteered to serve on the committee of a local psychiatric hospital and takes any patient care-related volunteer job he could find. When I asked him why he volunteers, particularly helping others with mental illness he cited, “Because I am good at it. Very good at it. I am organized, meticulous, (and) effective.”
Treatment Options
I had started to research TD further and along the way, I learned that it is often mild and reversible. In fact, the number of individuals who develop severe and irreversible TD is low considering the number of these patients who are on long-term antipsychotic therapy. Furthermore, this problem has been reduced even further with the discovery and broad use of atypical antipsychotics. Note: There is controversy as to whether the incidence has really gone down, but a colleague in neurology said that some new medications have shown some promise in helping those with TD.
Ted was offered a same-day appointment when I called to schedule a motor disorders specialist. After his evaluation I learned that Ted suffered from a curious movement disorder, which might be made better by trihexyphenidyl, an anticholinergic medication. But, there was concern as to whether he would even take the medication.
Outcome of the Case
It has been 1 month since Ted was prescribed a new psychiatric medication. He told me by phone today that he has not started it yet because he does not think it can cure his TD. I told Ted we could talk about it when he comes in for his blood pressure check. I knew that given all the suffering he had been through, coupled with the adverse effects of medications meant to help him, that I could not convince him or myself that this new one would clearly be different.
Viktor Frankl would tell us that Ted will be okay because he has found meaning in his life. “Those who have a why to live, can bear with almost any how.
Richard Colgan, MD, is a professor at the University of Maryland School of Medicine in Baltimore, MD, and the vice chair of medical student education and clinical operations in the Department of Family and Community Medicine. He is also the author of Advice to the Healer: On the Art of Caring by Springer.