Friday is cold and busy in the Emergency Room. The chaos is a living compound of blood, alcohol, fear and disease. Frank lays on a thin padded gurney in the hall. He is baffled. His blurred gaze roams the rod and gun club madness, the bedlam adding to his confusion. His squeezes his eyes open and shut, trying to reboot. Frank’s thoughts do not engage and he is isolated in a typhoon of wild humanity.
Frank has lung cancer. Despite requiring long-term chemotherapy and several courses of radiation, he had maintained a vibrant life. Frank worked, traveled, and enjoyed his family. Through woodworking, he constructed some remarkable pieces. Until this night, Frank had a high degree of control and human inter-connection.
Now, the high resolution CT Scan, ordered by the high speed Resident, unveils horror. The cancer has spread to his brain. Numerous small nodules scatter throughout the cortex. Frank’s brain is swelling. He feels unsteady, nauseous and confused. Frank knows where he is and understands the new metastases. However, he has trouble remembering details. It is difficult for him to plan and organize. Cancer is affecting his mind. Frank struggles to connect.
If this was a fictional story, the author could pick the narrator. In a third person narrative tale, the story is told from a distance. Characters are “he”, “she”, “they” or by their name. In some stories, the writer talks directly to the reader. This is the second person view and the author might write, “You look great today.” Finally, the narrator may join the story. Using this technique the narrator says “I thought” or “I did.” This is the first person point of view.
Unlike make believe stories, in life, Frank has no choice. People experience living from the first person. Everything is about what happens to me. No matter how we try to leave our mind and body, no matter how many movies we see, no matter how much alcohol we drink, in the end we are there, stuck inside ourselves.
Perhaps life’s greatest challenge is to move beyond our personal lens view. We go to great lengths to connect. We communicate by pouring out our soul and trying to absorb those of others. This is a hard task, but people do it well. We are capable of empathizing and learning from others. We find strength in that support. We bridge the existential divide. Social contact is vital to our sanity and why community and family are so important to each of us.
What happens to that first person narrative, when disease blurs the view? Many types of illness or injury can break or make difficult the connection. It is a cruel reality that at these critical times, haze can form on our mental vision. We desperately need to plan, understand and communicate, perhaps more than ever. Illness traps us inside. We hunger for love and support, but others cannot get in. Sick, weak, and needing community, we are adrift. Beyond the physical malady, we have a “first person” illness.
For caregivers, whether professional or family, this sort of patient is hard to treat and may be easy to ignore. They do not demand much…they cannot. They are not able to pull others into a world that they themselves cannot escape. I suspect we are all guilty of ignoring the limits of such patients. At times, we fail to take the time to understand a patient with a severe speech impediment or do not try to read a stroke patient’s nearly illegible handwriting. We walk away as they desperately try to pull us in.
Families may lose their internal links, when a key member is trapped. They may not know how to bridge that new chasm. On the other hand, people that have been close for many years have developed more subtle ways to communicate. With encouragement and time, they may be able to reconnect.
In literature there is a narrative method known as third person omniscient. The writer knows the thoughts, feelings and intent of each character. In the real world, we do not have that ability, but there are different techniques that we can use. Listening carefully to someone trying to communicate is vital. Take the time to find out how they are trying to interact. This requires patience and repetition. Ask questions designed to make answers clear. Use alphabet boards, electronic enhancement or perhaps pictures. Physicians need to make an effort to see the patient with a family member who may understand subtle clues. Encourage family members to speak for the patient and not insert their own bias. Work doubly hard to educate and empathize.
400 years ago the philosopher Descartes wondered if the world outside our minds really exists. He suggested it was all a show put on for our senses. At a deep level, we know this is wrong. We sense and need others. In fact, one of man’s marvelous abilities is to push out from that limited first person view and truly feel. When one of us is ill, it is vital to connect to that person’s mind and soul. The love we give can heal the wounded heart.