Invisible Injuries

“How’s your smoozie?” TC asks me in the car yesterday.

“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. 

Picture

Mr. Maslin looking good!

15 thoughts on “Invisible Injuries

  1. Abby, I commend you for recognizing that you have to let TC regain his independence. I am a student physical therapist and it pains me to see when patients are trying to relearn tasks and their supporters just step in and do it for them. You are doing a great job! Keep up the good work!!!!!!!!

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  2. Hi Abby, I’ve been following your blog for a while now. I live in DC on Capitol Hill. I had a TBI 10 and a half years ago from a car accident and just wanted to let you know that what you are doing now, stepping back like you are, is great at this stage. I have adapted to having and working on my TBI over time and that’s what TC needs. I figuerd out how to deal and work on what I could and how to cope and manage with what I cant. Make little systems in my daily life that make my TBI absolutely unnoticable to outsiders. If you ever want to chat, feel free to reach out.
    Best of luck to you and TC.

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  3. Great picture of the two of you. I’m glad that TC is improving. You are doing a wonderful job helping him to become independent again

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  4. God bless you both! Have been thinking a lot about you since our visit. TC, you are looking wonderful. Give Jack a big hug from me. Love you guys!

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  5. So many are lifting you guys up!! Keep the faith, hug TC, and know we are pulling for the positives and the upward and onward. Happy Easter to all 3 of you! Robbie C

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  6. How fortunate TC is to have such a loving, intelligent wife who realizes that she must let him make mistakes as he recovers from TBI. Have you thought of publishing your blog in book form?
    You are an incredible writer!
    BTW, great picture of you both!
    Cheers!

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  7. Abby, I am a retired rehab speech pathologist and you are doing a great job! I wish all of my patients had had a family member with your good instincts.

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  8. Touched by these heartwarming comments. Thank you for the support, everyone. It just never ceases to awe us. Peggy, the book is coming! Hoping to focus on it during the time we are in Halifax.
    Love to all.

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    1. So happy to hear you will publish your book! Next: the movie!
      And while TC might still have a ways to go, so do most of us under far less challenging circumstances. And you dear Abby, have multiple career possibilities gleaned from this arduous experience. I myself have learned so much from you. Thank you!

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  9. I know our experiences are very different, but every word you wrote spoke to me and helps me realize I am not alone. My husband doesn’t have a brain injury, but bipolar disorder and autism -two more invisible illnesses. One of which causes him anxiety in public, so much that he frequently loses his words when he becomes overwhelmed (very frustrating for such an intelligent man who expends so much energy faking it every day).
    I struggle as you do – do I jump in and speak for him? When we are alone and he loses his words, do I fill in for him the word he is stuck on or wait it out? Do I explain to people that the autism is why he abrubtly leaves a situation or needs them to stand further away or why we need a table in the restaurant as far from other people as possible?
    It is a fine line we walk as caretaker spouses – a line that often leaves us wondering who is supposed to be looking out for us. Just wanted to thank you for your words and tell you, too, that you are not alone. I have never met you or TC but have followed your story with great interest and a great deal of sadness for you. Sometimes I wish there were a grief group that helps caretaker spouses grieve for the spouse they lost while learning to love and accept the one they now have.

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  10. Just read this and can so relate as our 18 y/o recovers from a TBI what a balance it is to guide and let go and trust that she can handle/process the difficult moments.

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