“In this room sits a remarkable woman…” starts the 1954 documentary on Helen Keller. “She does not see the room, or the book she’s reading. She sees nothing. She doesn’t hear the rustling of the curtains behind her.”
Helen Keller, probably one the most inspiring deaf and blind persons in history, as well as a disability rights advocate and American author, learned to communicate with a finger system with her teacher, Anne Sullivan. Each letter has a sign, and Anne would spell out words in the palm of Helen’s hand. Did you ever see Helen Keller’s smile when she first started to communicate? Or when she spelled out her first word W-A-T-E-R? She was ecstatic about engaging in communication. She made contact!
I often think of Helen Keller after routine appointments with my son and his epileptologist or specialist. Sometimes the patient at the doctor’s appointment is non-verbal, or has dementia, or something physical that prevents them from joining in the conversation with their caregiver and doctor—but they’re still there.
Anyone who cares for someone and takes them to appointments knows their loved one like no other.
We want our loved one to feel the tapping in the palm of their hand, a reminder that they are part of the healing process and not just a patient account number.
Did you know there’s a page in Emily Post’s Etiquette (19th Edition) that says, “Don’t forget who’s listening. If doctors or other health professionals are in the room, don’t talk to them as if the patient weren’t there or refer to her in the third person.”
My teen son Luke is often disregarded as a Helen Keller. On any given day, it’s Heaven or Hell, due to the up and down nature of Febrile Infection-Related Epilepsy Syndrome, or FIRES syndrome epilepsy, and the overactive nature of his hippocampus. He will either spread love and joy like a Care Bear—or he will be slumped in a wheelchair, drooling, and sitting as still as a warrior turned to stone by Medusa. After a seizure he can move all but one finger—the finger that rewinds his portable DVD player to rewatch the cyclops scene of that campy Ray Harryhausen movie “The 7th Voyage of Sinbad.” Over, and over, and over. (You have no idea how many times my son has watched that movie).
These are the positive moments of human connection and mutual appreciation that make the many appointments fly by, as I usually discuss everything else with the doctors as my son passively listens and interjects when he wants to tell us something about Sinbad and the cyclops. On these days, I don’t worry. Yet how many of us care for those who have mostly bad days? Does our loved one forfeit our common courtesy if they physically can’t lift their chins?
The last time I went to see one of our regular doctors, it had been a year. There was much to plan with new treatments and innovations, and I take my caregiver duties as seriously as I take common courtesy and manners—I come equipped with research and an idea of how I think Luke’s treatment should go. I always greet these doctors with respect, as I know to get into their position they had to invest in years of study and advance to the highest level in academics.
Unfortunately, this was a very bad day. We had a seizure in the lobby three minutes before the appointment. But I wasn’t about to turn home after an hour drive and a year-long wait for a time slot with our in-demand epileptologist.
The appointment was efficient. I managed to shift focus from the seizure to the needs at hand. The doctor and I figured out what to do. I had to attend to Luke a few times when his video stopped working.
But the whole time, I was burning up inside. I couldn’t get over the fact that my son had been sitting there the whole time, listening to us babble on about him. The doctor, who may have innocently just got wrapped up in conversation, forgot to greet him. He forgot to check in with him, and during the 60-minute appointment, he spoke of Luke in the third person. He said a few things that were scary, like the increased risk of Luke dying in his sleep. I knew for sure my son could hear that part.
Though I left the appointment with some fresh ideas on Luke’s treatment regimen, I felt like I wanted to sleep and never wake up. It’s draining when you see your loved one get less-than-human type of care. It’s a robotic transaction. It’s no wonder Luke needed to escape into a world of Sinbad the Sailor. No one would ever ignore a sword-wielding hero.
I wish I could say this was an isolated incident. It’s not. More times than I can count, a bad day means Luke is treated like he’s not there. This lapse in bedside manners occurs across all types of appointments—from alternative and western. It makes me dread going to the doctor at all.
I think there are many of us who want to be in our doctor’s good favor. And we will sometimes overcompensate for their lack of manners and accept that our loved one was treated like they were invisible.
However, we all benefit from good manners. More than ever—after two years of masks, distancing, and telehealth, we need connection. We need affirmation that our loved ones are cared for. We need the human basics covered before we can move on to anything else. We don’t like to leave appointments feeling like we forgot something or that nobody cares.
I really don’t think doctors mean to be rude. They get wrapped up in talking to the caregiver. They have important information to gather and to share. Talking to someone who cannot respond takes extra time. It’s a bit of a chore. Sometimes it takes my son almost a minute to respond to a question after a seizure. I know seniors have ups and downs that make them not even know where they are sometimes. Yet, they deserve to be seen. Perhaps medical staff could use a little refresher on bedside manners. Perhaps hospital administrations need to hold a little pep rally on patient care.
Helen Keller could not hear the curtains rustling behind her, nor could she hear the words of her teacher, but she felt the touch of her teacher’s hand. She was blind and deaf, but always knew when someone entered the room.
I do believe it is common courtesy to greet everyone in the room—despite disability. If a person is sitting in your clinic, I would hope we can all remember that they should be greeted with dignity, and considered part of the conversation—speaking or not—they are there and they matter. It’s common courtesy.
