In my 3rd year of medical school I was on the pediatric psychiatric consult team. My job was to evaluate patients on in-patient pediatrics when there was a perceived psychiatric issue – depression, suicidality, behavioral issues such as intermittent explosive disorder. One day I was asked to go see Markus. I was told he was suicidal. A 14-year old with Down’s syndrome who’d had over 50 surgeries, including a recent homologous donor kidney. His kidneys didn’t work so his mom gave him one of hers. The kidney was rejecting. The parents were from Eastern Europe, were not wealthy, and had left the hospital for awhile as Markus’ reported suicidal expressions caused them significant discomfort.
I mentally conjured an image of a really sick, severely Down’s Syndrome kid. His chart confirmed my expectations. He had cardiac defects, penile defects, renal problems, and a host of other complex medical issues. The number of surgeries I was told he had was not a medical fish tale – it was true. He’d basically been in the hospital for most of his life.
Given that he was a “frequent flyer,” as many doctors call such patients, he and the “child life services” folks were well-acquainted. Child life consisted of clowns, musicians, and social workers who doubled as such. They provided the extra human touch for sick, perpetually hospitalized children from very young ages through young adults. One particular child-lifer, Janet, had known Markus since he was a young child. She visited him often, and on this particular day she had stopped by with her guitar and assisted Markus in one of his favorite activities – composing songs. Markus’ song that morning was particularly concerning to Janet, and she felt obligated to report her worries. Those reports go to the pedi-psych consult.
I knocked on the door of the hospital room to find Janet sitting next to Markus’ bed, her guitar in her lap, quietly talking with Markus. I introduced myself and Janet excused herself, with Markus’ approval and willingness to chat with me alone.
I was surprised to find, not the crippled, mentally retarded young man I’d expected to, but a functional, conversant young man. I asked him about his song. His lyrics indicated that he wanted to shoot himself in the kidneys, slice off his penis, and cut out his heart. He told me he hated those parts of himself that were defective, and his way of expressing this was through songs. He had no intention of hurting himself. In fact he was excited about life and told me he had a girlfriend. I was skeptical but within a few moments the phone rang, and it was a young woman from the facility at which they both lived, calling. He suddenly became even more animated, pulling himself up tall in the hospital bed, his notable facial and arm twitches becoming more pronounced with his excitement. “So, he really does have a girlfriend,” I thought, amused.
He excused himself from the phone call after a few minutes, and turned back to our conversation, eyes beaming and a big, goofy moon-faced smile on his adolescent boy face. The twitching quieted and we resumed talking. “Can I ask you a question?” Markus asked shyly but eagerly. “Of course you can,” I replied. “Even about sex?” “Okay,” I answered, unable to completely hide the surprise and amusement on my own face. I could barely suppress a chuckle.
We chatted earnestly for awhile. He had concerns about his penis, and this new love had inspired his impassioned song about his body. But he reiterated that he had a lot to live for.
After about 30 minutes, it was time to for me to go. I felt quite reassured that this was an amazing, highly intelligent young man, who in spite of a pretty intense songwriting session and severe disabilities, was going to be just fine.
I wanted Markus to know that he could reach me if he wanted to visit again, so I wrote my name and pager number on the white board on the wall opposite his bed. I also wrote that I was on the child psych team, so the nurses could easily reach me should Markus want me to come back by. Markus saw what I’d written. He thanked me for coming and asked me if I would erase that I was on the child psych team from his board. He paused, and thoughtfully said, “Instead, would you please write that you are the doctor for human feelings.”
I stepped out of the room and wept softly for a moment. I had received a great gift. A reflection back in the purest form, of what it means to sit at a patient’s bedside, to connect, listen, and understand. Thank you Markus.
Thank you for sharing this. I am married to a man on the autism spectrum who experiences intense emotions such as this adolescent young man about his own perceived body failures from various physical conditions. This really resonated with me. Much of what my husband verbalizes sounds horrific as he works through emotions, but he really is a vibrantly alive and willing-to-live person. Few “professionals” who would hear the things he says would see or take the time to see what is really going on with him. Thank you for being someone who DOES listen.
How awesome for you (both) to have had such an experience….for you the reminder of the need for humaness in medicine, for Marcus to have YOU as the one assigned to him….
Thank you Aviva for Nourishing my Body & Soul!
It is stories like this that provide hope for me, that I am Not alone in the way I provide “Love & Tincture of Time” to my clients.
This, unfortunately is what is missing in institutional care. It’s not that practitioners don’t care, it’s that we are working in a broken system filled with many demands, including that of a clock.
Anytime a client sops to tell me their truth Or ask a questions that challenges me, such as: “Have you truly seen this happen, meaning a woman in labor walking on an L&D Unit, I am reminded that one of the Greatest Gifts we can give to a client, a fellow human being is Respect wrapped up as Truth & Love! <3 Trish DeTura, Midwife, Maya Abdominal Therapist
What a moving story and beautiful gift for you… and also, that you gave to him… to really “see” him. I am so often humbled by what my clients tell me about how they are affected by my simple willingness to listen, witness, and speak candidly with them about things that many find difficult, like sex or death.
lovely story. thank you for sharing. I spent many years with many a child like this.
Beautiful!! Thank you for sharing such an amazing story!!
So sweet, so moving, thank you so much for sharing this story Aviva.
I shed a tear myself, reading that! What a beautiful, rich, powerful exchange. Thank you for providing this young man an authentic healing experience. xo
This is what i wish for every OB, midwife, doula, nurse, to KNOW! (as well as other medicine practitioners of course). Thank you for opening your heart to your work and sharing your work with the world…right on!
Beautiful, Aviva…thanks for writing this story and sharing it…and to Markus for his own wisdom. It is too bad that such ideas are still “exceptional” but as we all do our work, day by day, each in our own ways are helping to change the system from the inside out and from the outside in, and hooray for that. Compassion is our natural state of being. Though all the labels try to train us out of that, and separate us from one another, ultimately, love and caring, freely given, bring healing to all.
Oh my gosh. . . . What a poignant memory. . . Lovely young man
Touching, thank you for sharing!
you are a good listener. Your patient ‘heard’ you listening to him. I heard it too and I appreciate it. Listening is very rare these days.
such an amazing story.