“My smoothie, you mean?” I ask.
“Yes, your smoozie, ” he replies. “Oh wait, ugh, that didn’t sound right.”
He tries again about a dozen more times. Smoozie. Smoooo-zie. Smooz. Under his breath, I hear him trying to change that “z” sound to a “th.”
While trying to keep my eyes on the road, I show him how to put his tongue between his teeth in order to create a “th” sound. Eventually he comes close. It’s good enough for me.
There is no silencing the inner debate in my head. It’s been seven months and I still haven’t figured out how to support TC in a way that is helpful without being mothering. After all the trauma of nearly losing him, my instinct is to protect him fiercely. I am doing this in ways that have become so second nature that I rarely recognize exactly what it is that I’m doing.
Over the past few weeks, we’ve been out and about quite a lot: going out to eat, shopping, spending time with friends. In each of these situations, I have been forced to make about a hundred tiny decisions. Do I let him try to order his own food? Can he ask for his own prescription at CVS? Do I intervene if he starts stumbling on his words?
In larger social situations, I am desperately trying to prevent T from getting lost in conversation or fumbling to respond to questions. I become loud, animated, trying to guide the conversation in a way that I think TC can follow. I have become so adept at using facial expressions and gestures to communicate with TC that I can’t remember how to have a conversation without doing these things. I want TC to start taking the reins again in his friendships and communication with others, but at the same time, I have become so entrenched in each of his relationships that I feel awkward withdrawing myself from the situation. What if he needs me? I wonder each moment of each hour of every day.
TC is looking good these days. In fact, he’s looking remarkably good. He’s walking around independently (albeit rather slowly). He’s cooking again. He cleans. He gives Jack a bath and refills sippy cups and plays Words with Friends incessantly. But as we will both tell you, there is still a long way to go.
Having an invisible injury means that you have to be well prepared in your dealings with the outside world. TC is a very proficient faker in his interactions. His comprehension (or ability to understand what other people are saying) comes and goes. If you only spent a little time with him, you might not witness this firsthand. However, when you get past the “Hey man!” small talk and hit him with the hard questions, such as “Would you like your crab cake broiled or fried?” he freezes, looks my direction, and ask non-verbally for help. Being a good faker is not a bad thing when it comes to brain injury. In fact, faking it is nearly as important as being able to actually perform. It’s indicative of his understanding of social etiquette and norms and it speaks to his deep desire to fit in again.
This phase of recovery requires a tremendous leap of faith on my part. It’s a give and take in which I slowly relinquish his independence back to him. I just can’t stand to see him fail. But the logical voice in my head reminds me that the occasional failure is a necessary step in his continued growth. I can’t be there each moment of the day. I can’t protect him from every instance of confusion, sadness, or fear. In this sense, I feel much like a parent whose child is about to get their driver’s license. On one hand, how nice it will be not to be the chauffer anymore! But, alas, now come the long, sleepless nights worrying and wondering how the child will handle his new responsibilities. It’s necessary and terrifying in the same breath.
We’ve talked a little about preparing a sentence or two TC can say to strangers if he’s having trouble communicating; something along the lines of, “Excuse my speech. I’m recovering from a brain injury.” It embarrases him to even consider having to use this line, but the time will come when he inevitably needs it. It would be lovely to live in a world in which everyone was prepared to converse with people of diverse abilities, but, unfortunately, that is not our reality. And it can be especially hard for people who don’t “look” injured or disabled.
My goal for the next few months is to learn how to stand back and shut up. This wasn’t easy for me in the days before brain injury, so it’s going to be infinitely harder now. T needs the opportunity to take risks, make mistakes, embarrass himself, and start again. Painful as it might feel, I wouldn’t be a very good caregiver or wife if I didn’t give him that chance.