When we asked Janel to lift his arms and legs, he did this slowly, barely moving. His right hand trembled rapidly as I’d seen in the video Martineau had sent me months prior. We wanted to evaluate his walking, but he was too unsteady on his feet. When Martineau and I tried to help Janel up by his arms, he wobbled and collapsed back into the wheelchair.
I was confused, trying to reconcile the image of the patient I’d formed in my mind with the person in front of me. How could this wheelchair-bound young man who was barely able to move or speak still be going to college?
“Is he worse?” I asked Martineau anxiously.
“Leggierement,” he said matter-of-factly. (“Slightly.”)
“I thought . . .” I started and trailed off. “I thought you said he was a student?” I asked.
“He was, but he had to stop going to school,” Martineau said. He exchanged a few phrases in Creole with the lady in the corner who had brought Janel. I couldn’t follow what they were saying. “He made it to fourth grade,” Martineau translated for me.
“Fourth grade at twenty-three years old?” I asked, surprised.
Martineau nodded slowly, unfazed.
“And who is the woman with him?” I asked.
“That’s his mom,” Martineau said.
“His mom?” I asked, my eyebrows rising. “I thought you said he’d been abandoned?”
“Yes, that was the original story we heard,” he said. “But it turns out his mom could not take care of him anymore so Janel went to live with a man at their church. But she is still involved. She visits him there and helps take care of him.”
My thoughts were racing. We had been advocating in Boston to the hospital and donors for a college student who’d been abandoned by his family who wouldn’t need any rehabilitation after surgery. Our exact words had been that we expected he would “walk into the hospital” and then “walk back out.” It turned out that none of this was true. Sure, stories evolve as new details emerge, like the story of abandonment. But the rest had likely been my own imagination.
When I saw “twenty-three-year-old student” in Martineau’s initial email, I had assumed college. But due to the poverty in Haiti that causes children to start school late and have frequent interruptions, many older students are still in early grades. In Janel’s case, perhaps the tumor had been growing for a long time, causing him to have difficulty thinking, remembering, and paying attention, which had impaired his progress in school. With his minimal ability to interact and move, it was hard to even imagine how he would participate in fourth grade.
When I saw the video of Janel on the examination table, I had presumed he’d climbed up there on his own. In reality, he must have been lifted onto it. Of course, if he could walk and talk, why would he have been abandoned? It appeared obvious in retrospect. I had formed a strong but completely inaccurate impression based on the image I had constructed in my mind of an otherwise healthy twenty-three-year-old student from reading into the email, watching the video, and my desire to see—and make—a big save. Suddenly it seemed I had gravely mis-interpreted everything.
How would all of this have played out if we had known from the beginning that Janel was barely able to talk or move? Ian, the neurosurgeon, might have thought Janel’s condition was too advanced to undergo surgery. The hospital administrators might have been reluctant to commit to his case, given the risks of brain surgery at his level of disability and the level of care he’d need before and after his operation. Hermide, the generous woman who had agreed to house Janel, might have been less willing to do so if she had known he was so disabled that his own mother couldn’t care for him. And, sadly, the hospital and donors supporting Janel’s care might have found the story of a bedbound twenty-three-year-old fourth grade student less compelling than the sensational story of a college student whose studies were cut short by a progressive but curable tumor and who had no family to support him.
I even had to ask myself whether I would have gone through all of the work and advocacy of the preceding three months if I had known how bad off Janel was. Of course he still would have been a young man suffering from a disease potentially treatable in the US. But with the disease process so advanced, would I have thought of him in the same big-save sort of way? Or would I have felt that he was just too far down the path of his disease for it to make sense to mobilize all of the resources needed to get him to Boston for a high-risk surgery? I wasn’t sure.
So what was I supposed to do? Should I just keep moving forward since we had come this far? Even if it was probably too late to expect surgery would make him better, maybe it could at least prevent him from getting worse. Or had the first neurosurgeons been right after all, that a palliative approach made sense given the severity of his condition? Should I go back to everyone in Boston, sheepishly apologize for unintentionally misinforming them, and see how they responded? If I shifted course at this point, it would make me look naïve and unprofessional for taking things this far without really knowing the full story. It could even jeopardize my chance of ever bringing another patient from Haiti to Boston in the future, even a more straightforward case with a better chance of being a big save.
And what about asking Janel what he wanted? Martineau had said he’d discussed everything with him, but Janel didn’t look like he could eke out more than one-word answers. Did he really understand what was happening? Even if he did, how could he communicate that he understood?
I tried not to let my distress show.
“Are you ready to come to Boston?” I tried to ask Janel in my still-novice Creole.
He stared at me, expressionless, blinking slowly.
Martineau translated, asking him in more grammatically correct Creole.
After a few moments he croaked out another “Wi” (“Yes”) in his pinched, high-pitched voice.
“It’s going to be cold,” I said, mimicking a shiver and smiling nervously.
He continued to stare at me.
Again, Martineau translated my clunky attempt into grammatically correct Creole, chuckling.
No response.
Martineau gave me a brisk nod. We were falling behind, and it was time to move on to the next patient.
“Oke, n’a we Boston,” I said to Janel, putting out my hand to shake. (“Okay, we’ll see each other in Boston.”)
He stared at me. Then he slowly lifted his right hand a few inches off his lap. It quivered with a fine tremor and then began to shake more wildly. He put it back down on his thigh. The shaking stopped.
His mom wheeled him out, and they disappeared into the sea of people in the waiting area. How would she get him home? They had borrowed one of the hospital’s wheelchairs, she was thin and elderly, and Janel was too big to be carried. Somehow she’d gotten him to HUM. She must have found help along the way to hoist him up onto a taptap or motorcycle.
Martineau and the residents called the next patient in and began their evaluation, and I slipped out to find Michelle, who happened to be at HUM that same week. I had texted her to come see Janel with me, but she was in a meeting and said to check in with her afterward.
“How was it?” she asked, smiling excitedly.
I closed my eyes and frowned, shaking my head.
“What’s wrong?” she asked.