Unforgettable

I was young when I met Larry. Well, not that young: I was thirty-one. My medical training–thirteen years in all–was finally over, and I was working as an instructor in the child-neurology clinic at the University of Michigan, Ann Arbor, and caring for kids with epilepsy.

My patient Larry was seventeen. A stocky, dark-haired, nonathletic boy with borderline intellectual disability, he suffered from depression, and my notes mentioned his “pugnacious personality.”

From age eight, Larry had had epileptic seizures. Typically, he would lose consciousness and fall down, sometimes with grand mal convulsions. Despite taking several medications, he had seizures at least once a week.

Larry was unhappy and unloved. “His father was extremely angry and verbally abusive,” my notes read. “He had canceled the most recent clinic appointment as punishment because Larry had not done some things he was supposed to do.” Another note described how his father “would throw Larry into a cold shower or force him to eat cigarettes because of misbehavior.”

At school, Larry’s classmates taunted him, saying, “So Larry, are you going to flip out on us now?” He had few, if any, real friends. In the eleventh grade, he dropped out. His father put him into foster care for a while, but he drifted back home. Later that year, though, he returned to school and reported getting along better with his father.

I was young enough to look past Larry’s clinical labels–borderline intellectual disability and temporal-lobe epilepsy–and see a teenage boy who was hurting. We connected, although I didn’t quite understand why. I was just starting out as a doctor, figuring out how to relate to patients; I tried to see the world through Larry’s eyes.

In fact, I had just recently recovered from my own suicidal depression. I knew what it is to feel worthless and unloved, and I was trying to understand Larry’s life the way I understood my own–to see him as I saw myself. At any rate, I am sure Larry knew that I liked him and cared about him.

One day, I was seeing patients in the clinic when the secretary told me that I had a phone call. It was Larry.

I could tell he was upset. His voice was shaky; he may have been crying. I asked him about his meds, which he recited correctly, and I checked his chart and saw that his medication levels were fine.

He was upset about school. “My teacher isn’t treating me right. She doesn’t give me any attention. She doesn’t help me. No one helps me. No one likes me. I don’t have any friends. My father hates me.”

I had zero experience with talking to a teenage boy in distress, especially in the midst of a busy epilepsy clinic, but I did the best I could.

“Tell David to take as much time as he needs,” my training director, Dr. Allen, told the secretary. “We’ll talk later. Don’t worry about the clinic.”

Larry and I talked for over an hour. “I’ve been thinking about calling you for a week,” he said. “My teacher and my counselor aren’t helping me, and the other kids call me ‘spaz’ and make fun of me.”

“How can I help?” I asked. “Do you want me to talk to your teacher and counselor and ask them to be more helpful?”

“No, that’s okay,” he said.

As we talked, he seemed to grow calmer. “I want to finish high school and then go to a vocational rehab program, get a job and move on with my life,” he confided. By the hour’s end, he sounded like the kid I’d known, with none of his earlier shakiness.

Again I said, “Larry, please let me know if there’s anything I can do for you.”

“No,” he answered. “But thanks, doc, for talking to me.”

As we said goodbye, I said, “I’m looking forward to seeing you again.”

He didn’t answer.

Later that day, the clinic secretary came to me again. “Dr. Coulter, I think you need to take this call.”

Larry’s mother was on the line, sobbing.

“When I came home from work, I went into the basement and found Larry hanging from the pipe….Larry is dead. I called the police. They checked the phone and said that you were the last person he ever talked to. That’s why I called you.”

She put the officer on the phone, and I told him what Larry and I had talked about and offered to help in any way I could. Afterwards, I told Dr. Allen.

“David, go home,” he said. “I’ll take care of the clinic. Talk to Joanna.” (She was our social worker.) “Let’s talk tomorrow.”

At home, I wrote four pages of notes describing my conversation with Larry, in case the police would find it helpful.

I felt stunned. None of my experience or training had prepared me for this. My patient–the boy I’d loved and cared for–was dead. What more could I have done to save his life?

Like all doctors, I blamed myself. But Joanna offered a different perspective.

“David, the reason Larry called you was to say goodbye,” she told me. “He knew what he was going to do. Larry could have called a lot of other people, but he called you, because he knew you cared about him. I think he’d been planning it for a while, but he didn’t want to die until he’d talked to you one last time. You did the best you could, and you obviously meant a lot to him. So be grateful for that.”

I found Joanna’s counsel very comforting. For the first time, I realized what a unique relationship Larry and I had had.

The day after Larry’s death, I wrote to his parents.

“I am terribly shaken by what happened because I could not help him enough,” I wrote. “Through his memory, though, I will do all I can to prevent such a tragedy from happening to other children with epilepsy.”

Larry was buried in a small rural cemetery. The coroner certified the cause of death as an epileptic seizure so that he could receive a Christian burial. His family asked that contributions in his memory be made to our clinic.

Despite Joanna’s comforting words, Larry’s death was devastating for me. I felt personally responsible, and medically incompetent: I couldn’t save him from the demons that tormented him, I couldn’t control his seizures, and I felt that I’d failed him in our last phone call.

In the days that followed, Dr. Allen gave me space to grieve, and Joanna helped me to deal with my feelings of guilt. But I will always regret my inability to help Larry deal with his depression.

Looking back, I’ve wondered, How could I have missed seeing that he was suicidal? Why didn’t I call a teenage-suicide hotline? But I know that nothing in my medical training had prepared me for this, and back in 1979 there were no such hotlines.

I’m no longer young. In the forty years since Larry died, I’ve had the great privilege of caring for more than 10,000 children with epilepsy and intellectual disability. We have better medications now, but the stigma of epilepsy remains, and thousands of these young patients still need our love and support.

Larry’s memory has stayed with me throughout my career. I have never forgotten the teenage boy who first showed me how to care deeply for the patients who need our love the most.

 

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on email

David Coulter is an associate professor of neurology at Harvard Medical School and a senior child neurologist at Boston Children’s Hospital. In 2019, he received the national humanitarian award from the American Association on Intellectual and Developmental Disabilities, and in 2017, the Child Neurology Society gave him the national award for humanism in medicine. He has published four books of poetry. “Since Larry died, I have cared for thousands of children with epilepsy and intellectual disability–loving them, supporting them and trying to help them find happiness in life. I thank God that none of them has ever taken their own life as Larry did. Now, at the end of my career, I’d like to think that I have kept my promise to the boy who cared enough to say goodbye to me before he left this life so many years ago. And I take comfort in believing that someday Larry and I will meet again in a place where epilepsy does not exist.”

Comments

15 thoughts on “Unforgettable”

  1. I admitted him to the pediatric service at Mott Children’s Hospital. The Child Protection Team was involved throughout his stay. My description of his father’s behavior is based partly on the hospital discharge summary, so they were well aware of the situation. Social work was also involved. They did not intervene otherwise however.

  2. The doctor must have been a mandated reporter – he should have reported the father’s abuse to Family and Children’s Services, or whatever the appropriate state agency was. There might have been an intervention in Larry’s family that provided a different path for him that would not have ended in suicide.

  3. You had me crying! He definitely was saying goodbye. As a mother of a child with an intellectual disability, I see his struggle to fit in. I tell him that he is perfect the way he is and I would not have him any other way. I always wondered what would happen if they came from dysfunctional homes. It hurt me in my gut reading Larry’s story.
    You did the best you could. It was his love for you that made him call you before he killed himself. You were probably the only one he could talk to. Peace!

  4. As a nurse and the mother of a son with epilepsy (brain tumor at aged 27 non- responsive to RX but now, aged 51 with new RX and a neuropace, doing somewhat better), this story was moving for me. I’m glad you had support around you that allowed you to ‘receive’ Larry. For that is what we/they/all of us really want. To be heard and appreciated. You were that for Larry, even if you didn’t get that at the time. You can be grateful that his reaching out to you was an affirmation of who he perceived you to be as a doctor and a man. And so has he stayed with you and, I’m sure, as you continued in your practice there were moments that you took – to receive others.

  5. We can never predict many suicides. When my best friend killed himself I only knew that his life had been difficult for years but not that he had been recently stocking pills until he felt he could do it. I later realized he didn’t call me because he had made up his mind and didn’t want to be stopped. I lived nearby and would have driven over. The same is true with this boy. He just wanted a kind encounter before be did what he had planned. It’s so deeply sad, though.

  6. Sara Ann Conkling

    Thank you for sharing this. I think the reason most physicians don’t ask the critical question “Do you have any thoughts of harming yourself?”, is that they know if they do, and the answer is yes, it’s not going to be a short conversation. It’s going to put them “behind” on their day, because of production quotas and overscheduling (and the greed that underlies both). In decades of progressive chronic illness, only one physician has ever broached the topic with me. I wasn’t suicidal, but I appreciated a chance to speak about how hard my life is. His comment was, “if you didn’t feel suicidal from time to time with what you are dealing with, you wouldn’t be normal.” Particularly with patients with unremitting, serious, chronic illness, suicide prevention should be a primary goal of care. But in general, physicians don’t raise the subject. I highly recommend David Jobes’ work, if any physician reading this is serious enough about preventing patient suicide to want to learn how to do it.

  7. Beautiful and tragic reading; as you read you know where it’s going but you hope there is salvation at the end, and there is. We keep learning how to do it better.

  8. beautifully written essay, it made me cry. thanks for sharing your story and for your dedication to your patients and their emotional health.

  9. I am so moved by the intensity of this story so many years later. It shows that you are connected to your patients and their stories. Your PD was amazing as was the SW advice too. May you pass your knowledge and experiences to others.

  10. Thank you for sharing your story. I am touched by the sincerity of Larry & reminded to see beyond the literal to what is really being communicated from one human to another.

Leave a Comment

Your email address will not be published. Required fields are marked *

Related Stories

Popular Tags
addiction (11) alcohol addiction (3) allergies (2) anatomy lab (7) bedside manner (21) bigotry (3) breast cancer (13) cancer (116) caregiver stories (32) caregiving (33) chemotherapy (13) child abuse (1) childbirth (10) chronic illness (10) complementary therapies (1) confidentiality (2) connecting with patients (12) coping with death (29) coping with illness (42) coping with patient death (12) cross-cultural health care (6) cultural competence (33) death and dying (114) death of a parent (5) dementia (22) depression (14) diabetes (6) disability (10) doctor-patient communication (81) doctor-patient relationship (75) doctor as patient (35) doctor poems (25) doctor stories (127) drug addiction (9) end of life (102) end of life decision making (28) faith (3) family medicine (8) frustration with healthcare system (15) genetic disorders (3) geriatrics (46) getting the news (11) healing (3) health care policy (22) health care politics (5) health insurance (19) HIV (11) hospital (8) humor (17) ill parent (47) immigration (6) inequality (11) international health (18) labor and delivery (8) leukemia (2) medical errors (7) medical student stories (96) medical training (79) medicine (1) memorable patients (47) mental health (23) mental health professional stories (6) mental illness (11) military medicine (3) miracles (10) miscarriage (7) mistakes (11) neuroscience (2) nurse poems (19) nurse stories (35) nursing (19) ob/gyn (15) palliative care (10) parent stories (22) Parkinson's disease (2) patient-centered care (5) patient poems (8) patient stories (35) pediatrics (37) personal remembrance (10) physician assistant stories (2) poems/poetry (149) pregnancy (29) PTSD (4) race (13) realizing human mortality (9) resident stories (39) role modeling (5) self care (3) social determinants of health (15) social issues (22) social worker stories (4) spirituality (4) stress and burnout (23) suicide (5) surgery (14) thanksgiving (1) the bad doctor (9) visuals (170) war veteran (5)
Scroll to Top