I wanted to share with you an article I read today in the Journal of American Medical Association. This is typically a journal for physicians but this specific story I believe every person can relate to in some way. It tells the story of Joe, a man who found family in nontraditional places. Joe is schizophrenic and found that volunteering and reading helped calm the voices in his head. But Joe's story shows its readers that: "not all families are alike and family cannot be easily defined." So, even though most of us here are not family and we may not even know each other, we all can support each other.
The article has been copied and pasted below:
Young K. Roxanne. A Piece of My Mind: A modern Family. JAMA: November 24, 2010. Vol 304, No 20. Pages 2221-2222.
A Modern Family Richard Colgan, MD; Caitlin Iafolla Zaner, BS
JAMA. 2010;304(20):2221-2222. doi:10.1001/jama.2010.1709
I first met Joe on the 13th floor of an inner-city hospital. He was lying comfortably in his hospital bed, granted refuge as an unassigned medical admission for chest pain the night before by the inpatient team. Joe was a 73-year-old white man with uncombed hair, bushy eyebrows, and a severely stooped posture noticeable even as he sat upright in the bed. He had a gravelly voice—from years of smoking, I soon learned. On the chair beside him were his clothes, which were worn well beyond their life expectancy. Joe looked like someone who had worked hard all his life and appeared much older than his actual age. Aside from his appearance, I was struck by the tattered text by his bedside. It was an old edition of Age of Enlightenment, with "Enoch Pratt Library" stamped on the first page.
While taking his history and performing a physical examination, I noticed that Joe spoke brusquely with many facial twitches and gross motor disturbances. He did not use many big words. I asked him politely about his book, to which he replied, oddly, "Oh, you know. I enjoy reading works of philosophy, particularly about Erasmus and the Reformation." I had heard of Erasmus before, but was not very familiar with his history or theories. Joe knew all about this subject. He told me that he loved to read. I asked him about the last book he read. " Mein Kampf," he replied. I asked him what he read before this, and he answered, " The Rise and Fall of the Third Reich." I wondered to myself, Who is this guy? As it turned out he wasn't a Nazi at all but absolutely loved all types of military history. His most recent reads had focused on the world wars. Joe's favorite was the 1895 war novel The Red Badge of Courage by Stephen Crane. Joe continued, "But what I am really looking for, Doc, is a book about World War II by an American author—not a British author—but an American author." Given my first impression of Joe, I was surprised to learn of his scholarly pursuits.
Joe was born and raised on the east side of Baltimore and had made it through seventh grade. When I asked him why he didn't go further in school, he said, "I quit school the day my father died, so I could go to work at a warehouse to help support my mother." He had always loved reading and learning and tried his best to make time for these activities. At the age of 21, he married. It was also at this time that he developed schizophrenia. Unfortunately, this factor, as he explained it, was likely in part why his marriage failed after only two months and resulted in no children. That same year Joe was admitted to a state psychiatric hospital, followed by another stay at a different state hospital. These were the first of what were many psychiatric admissions; longer and longer each time and which ultimately became a 30-year period of institutionalization. His twisted facial expressions and thrashing body movements were caused by the cumulative adverse effects of years of powerful antipsychotic medications, which only dampened his disturbing thoughts and the obtrusive voices he experienced. Despite all this Joe was beloved by the hospital staff, where he held the reputation as an exemplary patient. Eventually he earned the privileges to work as an employee, supervising others in the boiler room. The institution became his home. In 1981, President Ronald Reagan rescinded the Mental Health Systems Act of 1980, which resulted in reduced federal funding to community mental health centers. Many patients, who were no longer thought to be a threat to themselves or to others, were released from intensive psychiatric care. This included Joe. After leaving the facility, Joe was offered and accepted a job to continue working at the hospital as a paid employee, with room and board included. Inexplicably, after a year of compensated service, he left.
For years after his departure from psychiatric institutionalization, Joe was dutifully cared for by Miss Elsie, a 60-year-old African American woman. Elsie was herself no stranger to difficult times. She had married twice during her life; both marriages ended in divorce from abusive husbands. For more than 25 years she worked long hours as a correctional officer. After retirement from this career, she opened up an adult care service in her two-story four-bedroom home in a working class suburb of Baltimore. Elsie was contacted in 2004 by an admiring social worker from a local hospital, who asked if she would accept a new client under her care. She was told this gentleman had resided in substandard housing under horrible conditions—essentially in a room that was little more than a mattress on a basement floor and virtually void of human contact. This is how Joe first met Miss Elsie, a stranger who would walk beside him for the rest of his life.
Joe had neither living relatives nor close friends. He often spent his time alone. On a weekly basis Joe took the local bus to the Enoch Pratt Library, where he would read for hours. On a good day he would walk away with free books in hand. "I can't believe they give these things away!" he excitedly told me. His prized collection comprised a nine-book series by Zane Grey stamped "Not for Resale/This Is a Free Book." Other favorites were Theodore H. White's In Search of History, The Outline of History by H. G. Wells, and Words That Made American History by Current and Garraty. Reading and extensive volunteer work helped keep his inner voices away. He was well known for his charitable services at the same inner-city hospital I met him. He worked for years, wearing a blue smock as he pushed patients in wheelchairs to their destinations around the wards. Miss Elsie noted that Joe had no close friends, recalling, "His friends were all those who he saw . . . everywhere he went."
But Joe's transquil life would quickly change. A workup for escalating chest pain revealed a tumor noted on CT scan. I asked Joe to come to the office to discuss this, which he did with a book in hand and Miss Elsie by his side. He would need a biopsy, I explained to the two of them, which took place several days later. Joe entertained the staff in interventional radiology while recovering from the outpatient procedure. He allowed eight Introduction to Clinical Medicine students to ask him questions about his background and to examine him. His biopsy showed "many hypermitotic cells." "It's adenocarcinoma," explained the attending pathologist to the students and me as we sat around a spider-like microscope with 16 heads in the basement of the hospital. Once the anesthesia wore off, Elsie took him home. Despite only two months of aggressive chemotherapy, Joe was thought to no longer be a candidate for cure or betterment and returned home for hospice care.
Joe continued to reside with Miss Elsie in her home. At our last home visit, my group of medical students and I were able to see the love and care that Elsie showed him—the difference she had truly made for this man. One student stood crying softly to herself behind Joe, as he sat in his recliner and tried to reassure us that he was in no pain. She told me that she had never been around someone who was so close to death. Still seated, Joe waved good-bye to us as we left that day with the directive he always gave at the end of each visit: "Take care of yourself now." Just one week later, on a Saturday morning, I received an unexpected telephone call from Miss Elsie. "He's gone," she somberly informed me. "Joe. I found him dead this morning when I went into his room."
Joe and Elsie certainly were a nontraditional family. They were two strangers brought together by difficult circumstances and who developed a caring and supportive relationship. She not only provided him with shelter, food, and his basic necessities, but showed him kindness, respect, friendship, and love. Joe reciprocated her dedication by giving Elsie someone to listen to and a helper around the house who often tried to complete chores despite his declining health. He frequently went out of his way to compliment and recognize her for all that she did for him. "You deserve better than this," he often told her.
Joe taught us humility, perseverance, and grace. His relationship with his caregiver illustrates the notion that not all families are alike, that they cannot easily be defined. Further, that by recognizing and supporting these nontraditional family relationships, physicians are better able to understand their patients and thus provide more individual and humanistic health care. When asked of Joe now, Miss Elsie is thankful and reflects, "He gives me the strength to keep on going."
Before he died Joe told me how much he enjoyed the two American-authored World War II books I sent him. Elsie suggested to Joe that upon his death he allow her to make a trip to Harpers Ferry, Virginia, to spread his ashes over a military battlefield. He liked the idea. However, she learned after his death that because she was not next of kin, nor had any recognized legal realtionship to Joe, she would not be able to receive his ashes. Perhaps there was some consolation in knowing that she was able to honor his other dying wish. Miss Elsie was successful in helping Joe complete the necessary paperwork so that he could donate his body to the state anatomy board, located next door to the hospital where he had volunteered his services for years.
A Piece of My Mind Section Editor: Roxanne K. Young, Associate Senior Editor.