Gabby_ A Story of Courage and Hope - Alison Hanson [106]
Dr. Francisco, a native of the Philippines, was patient and soft-spoken. We were newcomers to TIRR, and he wanted to help initiate us into the language of brain-injury rehab. He warned us that patients who can’t live up to their families’ high expectations can feel like they’ve disappointed them. Patients often get depressed, worrying that they’re not trying hard enough. They blame themselves for their inability to recover physically and cognitively at the speed their loved ones want. As a result, some suffer setbacks. To be of help to a brain-injury patient, we were told, families need to find a way to balance pragmatism and optimism.
“It’s vital to be positive,” said Carl Josehart, the chief executive officer at TIRR. “You have to remain hopeful. You have to push for greater recovery. But it can be problematic if you set expectations beyond what a person is physically capable of achieving.”
I had trouble accepting the idea that Gabby might have limitations. But her journey through rehab, and her perseverance, would teach me that recovery is a step-by-step process. Brain-injury patients tend to improve, then they plateau for days or weeks, then they take another step up. None of us, including Gabby, could afford to lose hope during the plateaus. It was possible that the next step would be a very large and exciting one. But we had to recognize that this was a long-term process. It would take months. Maybe years.
None of it would be easy. Gabby had to struggle to overcome her most daunting fears—that she’d end up forever locked inside herself, unable to communicate. And I had to admit to myself that I had my own fears to face: Would my caregiving skills meet all of Gabby’s needs? Would our life together be severely diminished for decades to come?
Perhaps the lowest moment at TIRR came in early February, before Gabby had even spoken her first word. One morning, she was in her bathroom and I was in an adjacent room, reading. Gabby’s nurse, Kristy Poteet, yelled for me. “Mark, you’ve got to come here! This isn’t good!”
I rushed into Gabby’s room and then into the bathroom. She was sitting in her wheelchair, tears running down her face. She was hyper-ventilating, absolutely panicked.
I saw how scared she was. I got scared, too. Through her tears, Gabby motioned with her left hand, waving it by her mouth. It didn’t take me long to figure out what was wrong.
She had tried to speak, and she couldn’t. No word came out. She tried again to say something, anything. She was making some sounds, consonants and vowels, but they were few. She was mostly just stuck. It was an extreme version of what we all experience sometimes when we are looking for the right word but can’t find it. In her case, she couldn’t find any words at all and she knew it.
She was having this panic attack because she had just figured out that she was trapped. Trapped inside herself. Her eyes were as wide open as I’d ever seen them and the look on her face was one of absolute fear. I could tell what she was thinking: that this was what her life would be like from now on, that she’d never be able to communicate even the simplest word.
She cried and I cried with her. All I could do was reassure her. “It’ll get better,” I said. “I promise you. You’re going to get better.”
I held her as the tears ran down her face. We were learning the parameters of her “miraculous” survival.
What helped? I found it lifted Gabby’s spirits when I talked to her about how far she had come. I’d go over each positive step in her recovery, and she’d nod her head.
She had virtually no memory of her two-week hospitalization in Tucson—the emergency room, the intensive-care unit, the presidential visit. Her only recollection was a faint one, of the day we took her on a gurney to the roof of the hospital so she could breathe some fresh air,