The past two days have been an enlightening exercise in what it’s actually like to live with aphasia. Since TC first became injured, I have considered myself a devoted and involved spouse, and therefore took pride in my ability to empathize with his challenges. As an outsider to TBI, looking in through someone else’s experience, I was pretty sure I “got it.” What I’ve learned in the past 48 hours is that “getting it” isn’t the same as fully appreciating it.
The program we’re participating in does an excellent job of involving partners in the therapy process. Yesterday the other two partners and I were given the task of not talking for the entire afternoon. Easy enough, eh?
Not for me. I’ve spent nine months talking on TC’s behalf, giving interviews, answering questions, making phone calls, and explaining our situation to various people. Being told not to do the thing that now comes most naturally to me was nearly impossible. Beyond the frustration of not being able to chime in, however, was the discouraging feeling of being left out. It made me wonder how many conversations TC has felt excluded from because either he couldn’t keep up with the pace or we deliberately quieted him for fear of putting him on the spot.
Meeting other individuals with aphasia has allowed me to better grasp the social and emotional toll of this disability on people. There are good reasons why TC and the other two participants love conversing with one another. No one rushes each other to come up with a word or jumps in and makes wild guesses. No one is ignored because they can’t speak with perfect accuracy. Everyone just sits there patiently, giving each other time and quiet support until they find the word for which they’ve been searching. It’s hard to articulate just how lovely these moments are.
Aphasia can have devastating effects on one’s confidence and self-opinion. I learned this last night doing my “homework”: a series of aphasia simulations intended to demonstrate the full range of challenge experienced by people after brain injury or stroke. Because aphasia is often accompanied by a number of other impairments, the degree of challenge required to complete a simple task is exponential in comparison to before. For some of these simulations I had to try to decode absolute nonsense while writing with my non-dominant hand. By the end of my homework packet, I was spent. I didn’t care to continue. In fact, I just gave up on the last simulation and walked away.
For TC to get up each morning, dress himself with one hand and vision in only one eye, walk slowly and limply two blocks to therapy, and then spend 8 hours doing tasks he had once mastered by the end of 1st grade is more than humbling. He tells me that there are a few moments each morning in which he thinks he’s normal and able-bodied again. Then as he gets out of bed, it hits him. He’s disabled. Same as yesterday. And the day before. He describes it as the most depressing version of that movie Groundhog Day.
If I’m perfectly honest with myself, I don’t think I could handle these challenges with a fraction of the grace that TC has demonstrated. He’s not the man he wants to be. He can’t do the things that once came so naturally. His motivation and self-esteem must be reborn from something new. Otherwise he will succumb to the depression and anger that grip so many TBI survivors. I started blogging, in part, to tell people what an incredible man I married. Though this experience challenges our relationship on so many levels, I continue to be awed by TC’s attitude and his accomplishments. Very few of us would be up to this task. It takes a truly remarkable person to fight this ambitious fight.
People who know TC well describe him as someone who can learn new things quickly and adeptly. I found this trait extremely annoying in the pre-TBI days. He was better than me at most everything! Tonight he continued that tradition by bowling the highest score at our biweekly group outing. I know he’s incredibly proud to be married to the woman who came in second from the bottom. I’d blame my score on the fact that I was being challenged to use my non-dominant hand, but my performance was pretty consistent with past experience. Lessons learned? I should find another sport. And, more importantly, you can’t hold a strong man down.