Erin's Mack Truck - Chapter 4

Megamarathon in the Medical Unit

While medical technology kept Erin alive, information technology kept the rest of us connected. Using a secure blog the hospital provided, Rob's sister posted the first update soon after Erin's emergency surgery, days after she gave birth. Rob posted daily updates while Erin was in the ICU. When Erin's lungs and heart looked ready to work on their own, he put that on the blog. When she woke up and was transferred to a medical unit, Rob posted that. Sometimes the blogs were personal but in the early days, many read like the pages of a medical textbook.

Almost instantly, the blog had more than 100 followers, mostly people I’d heard of but never met. Going to the blog was a little like walking into a party of strangers I felt I should know. The blog allowed us to leave messages for Erin and each other to read, a situation I found both awkward and irresistible. One evening, the week after Erin regained consciousness and moved to a medical unit, I sat in the kitchen, reading Rob’s latest post to my husband while he made dinner.

We are still awaiting a verdict from the vascular surgeons on Erin's feet and toes. Erin is not pleased with the prospect, but it is apparent that she will have to go to a rehabilitation center once she is healthy enough, and not directly home. Bob and I are now staying overnights at the house… Erin has made it clear that the staff @ MGH does a fine job caring for her, and we should focus on the rest of the family.

I tapped the base of my keyboard trying to come up with something warm and witty, anticipating that Erin and likely many others would read whatever I wrote. Chris chimed in,

“Ask when Erin is going to write her own posts.”

He’s always pushing, I thought. Forget it. But then I clicked the box for Private Message and wrote, “Chris wants to know when Erin is going to submit her first update to these pages.”

The next day, the update came from Erin. It started,

Ok, Chris S. Here is my first post.

I figured out how to use my ipod again a few days ago. So I have use of my hands, but not yet quite up to touch typing. Please forgive any errors.

I too am amazed by my recovery speed. But the next set of skills are going to be pretty hard to conquer.

She went on to describe her feet, comparing them to those of climbers caught in a freak storm on top of Mount Everest. She wrote that  the state of her feet prevented her from going home; she wasn’t allowed to let her toes touch the floor. Erin's first post closed with a mention of her next milestone.

I think I will be transitioning to a rehab center near home, maybe by Tuesday? for feet "boot camp." No promises on that.

This became the first lesson in hospital time, in which estimates add up to wishful thinking and best-case scenarios that rarely come true. Despite her physicians’ optimism, Erin remained at MGH another eight days, six days beyond the possible, not promised, Tuesday.

Though the rest of her systems got better every day, Erin’s feet remained dark purple substitutes for her real ones. She called them her eggplant feet. One day I noticed her big left toe. It had been a swollen, upright balloon but now it lay slumped over the top of her foot. She and Rob talked in terms of toes she could keep and toes she’d probably lose. An occupational therapist worked with Erin to help her regain full use of her hands. One day she and Erin colored together, a few days later they drew. After that, Erin started knitting and typing. Her feet remained the territory of vascular and plastic surgeons.

Erin stayed in the hospital and waited through days that stacked on top of days. Her recovery, which started out like a sprint, slowed to a crawl. She lived with a growing welt of envy that her children were safe and in good hands with Rob's parents. Nineteen days after giving birth she’d held her new baby only twice. Someone else was feeding him, listening to his noises and watching his squished face turn round. When her daughter cried for her mother, someone else comforted her.

As much as Erin wanted to return home, her extended time in the hospital gave our friendship needed exposure to the sun. Months after we’d run the marathon, Erin and Rob moved into a house 20 miles south of Boston. A few years after that they had their first child. The ease and primacy of our friendship, of picking up the phone to say, “I’m walking out the door, see you in five minutes,” disappeared. Getting together took planning ­— we made dates weeks out. Things came up. Boston traffic posed a serious barrier. We slipped apart gradually until eventually we saw each other once or twice a year.

Now Erin was a subway ride from my door. If I rowed far enough downriver I could practically see her window. Her proximity gave me a rare second chance — I visited several times a week. Between nurses replacing IV bags or checking monitors, staff delivering food on plastic trays, and physicians stopping by, we renewed our friendship as if no time had passed, even though everything had changed.

Erin turned 39 two and a half weeks after she first got wheeled into MGH. In an inane gesture, I made cupcakes. Erin doesn't like sweets but doing nothing seemed worse than inane so I made cupcakes from a back issue of America's Test Kitchen and shuttled them to the hospital in disposable containers.

From the hallway I could see Erin's primary care physician, nurse practitioner and a cluster of blue scrubs gathered around her bed. Part and parcel of teaching hospitals are the sudden groups that show up to discuss your case — and Erin had superstar status. Not only was her condition rare, it had come on so suddenly, so severely, she could have practically sold popcorn at the door. Instead she answered questions and filled in details. At least once per visit, she reminded the assembled group how much she wanted to get home. Her children needed her. She always got a round of understanding nods and murmurs. Finally the crowd shuffled out and left Erin, still propped up in bed, exhausted, and frustrated.     

I walked in and Erin looked more forlorn than I’d seen her. The windowsill was crammed with a new swelling of cards. The birthday messages made Erin sad. The cupcake containers stacked under my chin made her sad. I pushed them into a corner next to a dark chocolate cake the nurses brought Erin, which also made her sad.

All week she'd looked forward to getting released to rehab that day, already four days past the original forecast of Tuesday. The rehab facility would get Erin within two miles of her home and her children. She and Rob could start to rebuild. But earlier that morning, Erin’s primary care physician told her he wanted to keep her at MGH over the weekend. Sending her to a new facility on Friday, right before the rehab center went to a weekend crew didn’t make sense. I was struck by the obvious fact that the places that take care of us are workplaces, just like an office or other jobsite and this disheartened me. I wanted any place that took care of Erin to be a well-greased machine, focused on patients and not the baseline at which most everyone I know lives their lives — families, homes, weekends.

Rob went out to get a cup of coffee. When it was just the two of us, Erin looked up at the ceiling and cried.

“I looked forward to this time for so long. To three months of maternity leave with my new baby. To nursing him and getting to know him. And instead I’m stuck here. I can’t get to him, I can’t hold him. I barely even know him.”

I sat next to her bed helpless, remembering my silent vow the first time I saw Erin breathing through a machine. My wish had come true — Erin was alive. Now I had to hold my breath so I wouldn't say something stupid, something that would have translated into, Don't worry, it will be fine. And please don't inconvenience me with your sorrow. My mouth filled with meaningless reassurances and vague platitudes while I sat there mute. Thirty seconds later Erin looked back at me and asked what I was working on, a signal to talk about something else. 

Both of our moods brightened when Erin’s occupational therapist walked in, a women with brown curls down her back and purple scrubs. Erin introduced me to Karen and asked her to tell us the Dalai Lama story. Karen laughed with embarrassed joy. Before the Dalai Lama spoke to a packed Cambridge auditorium the week before, her boyfriend, a sound technician at Harvard, put the microphone on his robe. At Karen’s request, her boyfriend gave the Dalai Lama a string bracelet she had worn for the past two years and told him, “My girlfriend asked me to give you this.” In response, the Dalai Lama took off his scarf and said, “Please give this to your girlfriend with my gratitude.”

“Wow…..” Erin and I said in unison. 

Karen laughed and shook her head. “I know.”

Karen had come to wish Erin happy birthday and say goodbye. She didn’t have another shift before Erin’s discharge. Even a woman as emotionally generous as Karen had a life outside of the hospital. They hugged and she was gone.