Together, the psychiatrist and Hermide called Wilner, who told them that he had never seen Janel be combative, but the incontinence, minimal verbal communication, and complete dependence on others for eating and walking were similar to what he had observed when Janel lived with him. Wilner didn’t understand why Janel was refusing treatment but apologized, saying he was ashamed that Janel was behaving this way. Wilner believed that Janel’s behavior must be part of his disease and not what Janel would really want—he would want to be treated for his condition. Wilner encouraged us to do whatever it took to complete Janel’s treatment.
Wilner spoke to Janel and asked him to promise that he would participate in his care and stop resisting the efforts of Hermide and the ladies living with her. Then Wilner told Hermide to speak to Janel with more authority in her voice.
After Janel had a few days’ rest from going to the hospital, Hermide thought he was doing much better. He asked her to help him out of bed, then walked with minimal assistance downstairs and watched television with her. When Michelle visited, he greeted her with a smile and a handshake.
By the end of the weekend, we felt encouraged. We concluded that arriving at Hermide’s house and starting treatment were a lot for him to adjust to all at once. Since he seemed to be settling in, Hermide felt we could try to restart treatment the following week, and she said Janel had agreed. We let the oncology team know.
Monday arrived, and since I hadn’t heard anything from Hermide by the time I finished my morning clinic and took a quick break for lunch, I presumed everything was going well. But just after noon, Anne and I received an email from one of the oncology nurses that Hermide had called them to say that Janel was curled up in the fetal position and she couldn’t get him out of bed.
Seconds after the email came through, my phone rang. It was Anne.
“What happened?” I asked her.
“Same thing. He wouldn’t get out of bed,” she said.
“Did she call Wilner?” I asked.
“She did, but it was too late,” she replied. “After Wilner talked to Janel on the phone for a while, Janel agreed to get out of bed and go to the hospital, but they had already missed their appointment. They’re going to try to get Wilner on the phone first thing in the morning tomorrow. Let’s give it one more try.”
“Okay, but what are we going to do if this doesn’t work?” I asked.
“I guess we’ll just have to wait until we can get his mom here and see if that helps,” she said.
“But that could be months,” I replied, concerned that we didn’t have a good plan in place.
“What else can we do?” she asked. “He needs the treatment, right?”
“True,” I said. “Well, let’s cross our fingers.”
I pleaded with the oncology team to give Janel one more chance to get into a rhythm, explaining our new plan of having Wilner on the phone in the early morning. They kindly agreed but warned me that as Janel received more treatment, he would become sicker, and so things were only likely to get harder for him and for everyone else. Though I had pushed back against their concerns before, now I shared them.
I sat in my office the next morning trying to focus on finishing clinic notes from the previous day’s patients and reviewing patient charts for my clinic that afternoon. But I kept imagining Hermide begging Janel, pushing him and pulling him, the women who lived with her wrestling him into a wheelchair. If Janel didn’t like going to the hospital, this would certainly be understandable. But once he was in the hospital, he calmly cooperated with all aspects of his treatment. He didn’t resist or complain about having his head tightly encased in a mask bolted to a table for radiation therapy. He barely flinched when he was stuck with IV needles. So why was he so resistant at home? Hermide treated him so lovingly and patiently, like her own child. It didn’t make sense.
I thought of an old neurology riddle: “When is a patient with Parkinson’s disease most likely to fall?” the professor asks. “Late in the disease?” a student answers, falling into the professor’s trap. “No, after getting on the right medications!” the professor replies, in a gotcha tone. Patients who have been slowed and immobilized by Parkinson’s disease for years can suddenly gain newfound fluidity and energy with the right treatment, and often overestimate their abilities. In their overeagerness, they sometimes try to move faster than their bodies are ready to, and fall.
Could it be that Janel’s brain was beginning to function better after years of severe impairment, but he wasn’t yet in control of his new mental faculties and not entirely aware of what he could and couldn’t do? Was he confused as his brain woke up to a reality far from Haiti, with no clear memory of how he got there?
My phone was ringing. It was Hermide.
I sighed, answered, and braced for the worst.
“Doctor Aaron, we are in front of Brigham, but Janel is refusing to get out of the car!” she said, flustered. “We don’t know what we can do!”
At least they had made it this far, I thought. “Which entrance are you at?” I asked.
“The main entrance,” Hermide said.
“I’ll be right there,” I said and hung up.
I put on my winter coat and started making my way across campus, wondering how I was going to get any of my work done with Janel’s care becoming nearly all-consuming. Still, I was curious to see what this whole scene looked like after hearing about it secondhand for the prior week.
Hermide was parked in front of the main entrance to the hospital with the back right car door open. Janel was sitting in the back seat next to the open door, staring forward. A hospital staff member was waiting patiently outside the car with a wheelchair.
“Bonjou, Janel,” I said. (“Hi, Janel.”)
“Bonjou,” he said in his high-pitched croak after a delay, still staring straight ahead.
“Mwen kontan we w,” I said. (“I’m happy to see you.”)
After another delay, he replied, “Mwen menm too.” (“Me too.”)
“W vle vini pou tretman an?” I asked. (“Would you like to come in for your treatment?”)
“Dako,” he said, after a pause. (“Okay.”)
“Vini,” I said. (“Come.”)
After a few seconds, he gradually turned his head to look at me.
He blinked slowly a few times.
“Ale, an nou vini,” I said, reaching out my hands to him. (“Come on, let’s go.”)
He looked at me for a few seconds without moving. Then, slowly, he reached out his arms. I motioned to the staff member waiting with the wheelchair to come closer, and we gently stood Janel up, helped him pivot his back to the wheelchair, and guided him down into the seat.
“Mm! He listens to you!!” Hermide said from the front seat, shaking her head.
“I’m not sure why,” I replied, surprised we had gotten him out of the car so easily.
“Well! Maybe because you are a man!? I don’t know!” She had that angry inflection of her accent coming through again.
I let out a little laugh. “Is it really that simple?” I asked. “Well, at least we got him out of the car.”
Hermide looked away and shook her head, making a tsk sound. I said goodbye and ran to my clinic, where I was late and had to apologize to my patients for keeping them waiting.