Kasman, Deborah L. MD, MA
Dr. Kasman is medical bioethics director, Kaiser Permanente Medical Center, Baldwin Park, California; e-mail: firstname.lastname@example.org.
Having an emotionally disturbed child is an isolating experience. The child is in deep pain, and often clinicians cannot understand their perceived reality. Treating the child can feel at times like stabbing in the dark with an inadequate array of drugs and therapies to ease the child’s suffering. Solutions may take months, medications will be trial-and-error, and the side effects may be serious and sometimes debilitating.
As practitioners focused upon the child’s treatment, we may not recognize the struggles of the child’s family members. What happens to the structure of their lives? What happens to their jobs, their social endeavors, their sense of joy, their vision of family when things are not as they dreamed they would be? Can we openly engage the parents, or might the parents be the source of the child’s deep pain and angst? Do we understand what the parents experience when their child is hospitalized in a psychiatric ward? Do their coworkers bring them casseroles and ask how they can help, or do these scared parents face the averted eyes of acquaintances afraid to ask questions about the status of their “mentally ill” loved one? I personally know that the parents of emotionally disturbed children are not greeted with the support that surrounds parents when their child has cancer, a heart condition, or a traumatic accident.
These poems illustrate a loving mother’s attempt to understand her son who is emotionally disturbed. How does the world look through his eyes? What are his inexplicable struggles that no one seems to have a magic wand to fix? The countless appointments with doctors, psychologists, counselors, and even acupuncturists have led to no answers, no relief for the pain her son feels or for the pain she is living through. She tries indefatigably to imagine what her son needs, or how he interprets the world in the midst of his rages and explosions. Ultimately she wonders who she is, no longer recognizing herself in the mirror, and whether or not she can make it through yet another day of chaos and pain. Yet if she is not there for her son, then who else will be?
These poems give the practitioner a small glimpse into the experiences of families with children who are emotionally disturbed. The outbursts of these children scare others—teachers, clergy, extended family, and friends. The child’s actions are “unacceptable,” and, hence, these families retreat into a deep hole, seeking answers from medical and psychiatric providers. Do we see them? Do we hear their pain? Can we say, “I don’t know how to help yet, but I will not abandon you, I will not shun you, I will not push you away too”? In sharing these poems, the author begs providers to give the grace of their curiosity and even hopes for their compassion and understanding.
Years ago, I studied physicians’ emotions during training and found that the number one emotion was anxiety over uncertainty.1 In the time since, I have continued to study the ethics of uncertainty in medicine. How do physicians handle patients when the proper answer is “I do not know,” as it so often is when we work with children who are emotionally disturbed? As physicians, we feel that we are supposed to have the answers, yet there are many problems we do not solve. In these cases, we must still be willing to journey alongside our patients. Yet, when the diagnoses are elusive, such as in pediatric mental illness, our own fears of “not knowing” can be magnified by biases toward those with mental illness. Our own fear rises when the affected individual becomes violent, on alert to guard our safety and the safety of others. How do we maintain our compassion for the patient and for the patient’s family in the midst of our limited understanding and fears?
In many ways, we cannot envision the challenges these patients and their families face without having had similar experiences ourselves. Seeking a deeper understanding of these experiences, however, can help practitioners remain present and compassionate in the face of uncertainty, and embark with our patients and their families on a journey of discovery and healing. In this spirit, these poems merely offer a chance to say: “I wonder. I wonder what it might be like to live with both fear of—and equally matched love for—the affected individual.”
These poems are about my son. For years, I did not have a diagnosis, and although it remained elusive until my son turned 13, someone finally asked, “Could he be on the spectrum of autistic disorders?” Now, I know my son has Asperger syndrome and an IQ of 160. He will always be a “quirky” kid, yet with his learnt ability to control his outbursts, his added insights into how his brain works, and a lot of stick-to-it endurance from his loving family, he is doing very well. He is off all medications, doing well in school, has friends, and is once again laughing and smiling. He is a thriving teenager. I am lucky and count my blessings daily, yet beg of all providers to open the door of curiosity and continue to lend a compassionate and helping hand—even when the answer is truly “I do not know.”
Author’s Note: I wrote this commentary before the massacre in Newtown, Connecticut, occurred on December 14, 2012. I mourned alongside the rest of the country for the tragic loss of lives. The events in Newtown highlight a lack of resources for our emotionally disturbed, vulnerable youth. In addition, our own fears of mental illness cause these children to be woefully stigmatized. Society has not found a way to hold their uniqueness as valuable and worthy of embrace. By seeking a deeper understanding of their experiences, we can help these special children and their families avoid feeling isolated and hopeless. I hope we, as physicians, will lead efforts to speak up for greater mental health services for, and acceptance of, our emotionally troubled youth.
Disclaimer: The views, opinions, and contents of this piece are solely those of the author, and not of her institution.
1. Kasman DL, Fryer-Edwards K, Braddock CH 3rd. Educating for professionalism: Trainees’ emotional experiences on IM and pediatrics inpatient wards. Acad Med. 2003;78:730–741