Friday, July 19, 2013

For my Daughter, the Patient: a "Golden Cocoon"

Hospital transport arrives to take my daughter just after 9 AM. We’d been told her ultrasound and X-ray were scheduled for 10 AM, an hour away. Jess and I exchange a look. She’s just about to take another swig of the laxative drink she’s been drinking since 8:30. “I’ll go with you,” I say. “We’ll make sure there’s a bathroom nearby.”

Strike one for the Golden Cocoon.

We get to the ultrasound department, and are left alone in a holding room. We’re told the nearest bathroom is down the hall and to the right. Jess can’t walk. I stop a man in a white lab coat, explain the situation. He makes sure we’re ushered into a procedure room that has a bathroom.

Score one point for the Golden Cocoon.

Jess the day after she was admitted to the hospital
Five days prior, Jess had been diagnosed with Guillain-Barre Syndrome, an auto-immune disease where the body attacks the coating that protects the nerves. In the space of five days she’s lost the ability to walk unassisted. She’s wracked with back pain that can only be managed by intravenous morphine. Overnight, her face became partly paralyzed. We’re told her condition might worsen…the paralysis might move from her arms and legs to her chest. If it reaches her diaphragm, she won’t be able to breathe. If that happens, she’ll be whisked off to intensive care. A breathing tube will have to be inserted, to keep her alive until the symptoms begin to reverse. In any case, even if the worst never comes to pass, recovery will take six months to a year.

There is no cure. There is a treatment, an infusion dripped into her arm that carries a substance extracted from the blood of 20,000 donors. As we pray for this treatment to curb her paralysis, other problems rear their heads. Strong painkillers have seized up and stopped Jess’ digestive system. She can’t keep food down. There may be problems with her liver and kidneys, too, which is why she’s having this day’s diagnostic tests.

As the technician completes the ultrasound, the man in the white lab coat hovers over the screen. “Liver looks good”, he says. Great news, but Jess’ face is pinched. She is deep breathing now, in pain. Her morphine shot is due. “How long to get her to her X-ray?” I ask. “Depends how long it takes for transport to get here,” says the technician, wiping gel off Jess’ belly, not meeting my eyes.

Strike two points for the Golden Cocoon.
Our daughter Jess
Since she was admitted, my husband Jim and I have stuck to our daughter’s side like burrs on a Collie. I refuse to leave the hospital at night; he returns every morning. He sees Jess struggling to breathe through the pain, and hovers over his little girl, his tone soothing. “Take deep, calming, breaths. Belly to your spine, now let it out. You’re in a golden cocoon,” It’s an image from meditation practice, an activity that they share, where you imagine yourself bathed in a golden, healing light. You breathe it in, and breathe it out. Try not to let distractions, negativity and pain reach you. To preserve her Golden Cocoon, Jim brings rose oil and dabs it under her nose. We greet everyone who enters her room like they are guests in her life, guarding Jess’ sleep and peace as best we can. I massage Jess’ numb legs and feet with lotion… legs that just months before had taken her on a 2,200-mile walk traversing the entire Appalachian Trail. Rubbing her legs, I smile up at my beautiful daughter. I can’t let her see the sadness and fear that well up inside me.

But we have our work cut out for us. As an endless cast of doctors, nurses, specialists, phlebotemists and therapists rotate in and out of Jess’ room, each needing to extract something (blood, information, a vital sign) from her tortured body, some are truly wonderful. But some have no concept of the Golden Cocoon, or they wouldn’t grab her wrist to scan her bracelet without a word, or leave the door open to a noisy hallway when they leave, or send her off for an hour of tests after starting her on a laxative.
Back in the ultrasound bay, I ask “is there any way we could hurry with transport to X-ray? Jess is in pain, and due for her morphine.” The man in the white coat looks up, turns to the technician. “Why don’t we just bring her there?”

I smile my thanks, squeeze Jess’ hand. Score two for the Golden Cocoon.

The Chief of Radiology transporting Jess to X-ray
I call Jim on my cell phone. “We’re heading to X-ray now. Can you talk to the nurse and make sure Jess’ morphine dose is ready just as soon as we get back?” We set off with Jess’ gurney, white coat man in the lead, ultrasound technician pulling up the rear. “That’s the Chief of Radiology!” the technician stage-whispers to me, referring to white coat man. “This is the first time I’ve ever seen the Chief of Radiology transport a patient!”

Score three points for the Golden Cocoon!

Jess is whisked immediately into X-ray. They are actually waiting for her. Someone has called ahead.

Score three points.

As her gurney is wheeled inside, Jim comes down the hall with Jess’ day nurse, Patricia. On her face is a big smile. In her hand is a hypodermic needle-- Jess’ dose of morphine. Jess sees them arrive, takes it all in. Her frown smoothes out, she exhales deeply. Her eyes close slowly. Tears leak out.

Score five for the Golden Cocoon!

Words can never express the gratitude of a terrified parent when such kindness is shown...when we feel seen, and that we matter. (I wrote about this in an earlier post about the Ken Schwartz Center for Compassionate Care). Think about it: as hospital patients, a parade of people you do not know have license to pierce and cut your skin, waken you out of your sleep, expose your body, move your things out of your reach, or refer to you as “the knee replacement in 305”. The dehumanization of patients is not conscious; it’s a consequence of the staff heeding rhythms, schedules and constraints they are told to serve. But when we let the little “dents” to the patient’s cocoon go unchecked, when no one points out how hurtful these seemingly small wounds are to our spirit and sense of self, it gives tacit permission for bigger ones.
Jess, her first day home, kitties at her feet

The secret ingredient is consciousness. We protect fragile things before we put them in the mail, insulating them from harm with layers of bubble wrap and sturdy cardboard.

Surely the hospital patient deserves no less.

Thankfully, our daughter Jess is recovering remarkably well. We're incredibly grateful to her wonderful medical team, and to more people than we can mention in this post, but that time will come. One thing is new: frequently, if we’re having any kind of vocal disagreement in her presence, Jess will warn us with a wink, “You’re hurting my Golden Cocoon!”


  1. Powerful story of how live + commitment attract like to like. This is how healthcare for the dangerously ill *should* be. Kudos, mom. Keep bein' that burr on a collie.

  2. Thank you for sharing your daughter's story...and for humanizing what happens to people when the medical world comes down around many have no one to be their advocate...your daughter was blessed by you and your husband, and your knowledge and assertiveness. She was wrapped in that warmth.

  3. Thanks, Casey, and...Nancy, right? I think often about what happens to people who don't have support. Jess was on a neuro unit with many elderly folks, and when we passed other patients' rooms, there were some it seemed who never had visitors. The sense of "what will happen to them?" is one reason patient advocates keep pushing for "better". It's a little corny, maybe, but MLK said "I can never be what I ought to be until you are what you ought to be". We rise or fall as a society by the opportunity available to all.

  4. I'm glad your daughter's recovering well, GBS can be a terrifying experience especially when many of the hospital attendees are treating the patient as just another routine. It's always good to be reminded that there ARE attendees out there who make a consciously try to make a hospital experience a little easier for both the patient and the family.

  5. Your family's experience is heart rending. It reminded me of Sara Manguso's similar experience with an autoimmune nerve disease, described in her memoir, Two Kinds of Decay, which has a happy ending. May the same be true for your daughter.

  6. Louise and Adriana, you have no idea how grateful I am for your comments. I'm taken aback even now by how scared I was...this is something I'll never forget. Adriana, there was one nurse named Lisa who was so wonderful...I look forward to writing a blog post about the difference she made in our experience. And Louise, I thank you for the book recommendation (we will eagerly read it) and greatly appreciate the kind thoughts.

  7. What a moving post. Thanks so much for sharing this. The truth is that when we are patients, we all need our family - and the professionals taking care of us - to help protect the golden cocoon (love that image!).

    Your family’s experience also strikes me as a brilliant example of what is getting to be known as “trauma-informed care”. At every step of the way, you reminded your daughter’s providers that they could make this experience just a little less traumatic by finding ways to mitigate the most painful / scary / difficult parts. Along those lines, the website and blog from the Center where I work (Center for Pediatric Traumatic Stress) has lots of easily downloadable resources to support trauma-informed care for children and adolescents. Thought those might be of interest.

  8. Nancy, thanks for you comments and the wonderful resource you shared. I'll be sure to pass it along!