What I want you to know about being the spouse of a brain injury survivor

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Brooke F. 

There are a million things I want you to know about being the spouse of a brain injury survivor. But, as I push my husband around town, I find myself wishing that I could shout from the rooftops (or put a sign on the back of his wheel chair) that things weren’t always the way there are right now. We used to be a very “normal,” very happy family. I practice it in my head something like this, “Pardon me, can you pass me a bunch of broccoli-he wasn’t always like this-thanks.” But, instead, I let people wonder. I imagine I have been many characters in people’s minds-the caregiver, perhaps a sister, and even a mother. I know that last one is for sure because a man once called him my “son.” I know people wonder if he was injured in the war, the victim of a car crash, or even just born “that way.” None of those are even close to being true. Nope. One morning while at work, I got a text from him saying he was so dizzy he couldn’t walk. That’s how this all began. After three weeks of testing and damage already done, we learned he had a swollen brain for reasons doctors still aren’t sure of. I try not to think of what would be if three weeks hadn’t passed before we knew what was wrong.

I want you to know who my husband was, who he still is in his spirit. He is the funniest man on the planet, he made me belly laugh until I was in pain everyday. He would do anything for anyone, and has taught me about the importance of believing the best about people. He is a great father. He watched our daughter when she was a newborn without fear and wore her in her sling proudly. He changed every single diaper in the first two days after her birth. In fact, I had to ask him to change my first diaper, because he was so attentive and wanted to be helpful. He thought of everything, took care of everything, and is my hero and my rock. It has been hard to learn how to take on all of his responsibilities.

I also need you to know that, on the outside, he isn’t the same anymore. Pretending he is doesn’t help. Yes. He is still capable of many things, but he is not the same. He may likely never be the same again. That reality is illustrated in a conversation I had with him this morning, “Honey, I need you to have more grace for me. I juggle a lot. I have a lot on my plate and I am doing the best I can to take care of you and C.” 

His response, “On another note, I was thinking we should use our tax return money next year to paint the house.” I burst into tears. “Why are you crying?” 

I have hoped for over a year and a half that he would wake up and remember who he is, and he hasn’t. I want you to know that I still love him deeply, maybe even more than I did before, even though he isn’t the same. The hardest thing I have ever done is teaching him that he needs to say, “I love you, too” when his daughter, mother, father, or me tell him that we love him. Somehow, in seven weeks of hospitalization, and two major surgeries, he forgot how to be a friend, father, son, and husband. It is exhausting to try and teach him.

I want you to know that it would be easier to leave him, to take our daughter and not see him everyday. Looking into his eyes is a constant reminder of what once was and what never will be-adoption, more babies, being a stay at home mom, taking care of our daughter instead of her taking care of us. Our daughter will never know how wonderful her dado is. She will never be able to rely on him to rescue her when her car breaks down on the side of the road. He may not walk her down the aisle. He won’t be able to have the “this is my precious daughter and you better treat her right” chat when the first guy comes to take her on a date. When she leaves the house, I will be even more alone than I already am. Dreams, hopes, desires…gone. Baby showers, those are the absolute worst. Weddings seem like a good idea until I get to the car and can do nothing but weep. Watching the person I love most in the world have to observe life as a spectator is torture. It would be easier not to have to deal with all of that, but I take my vows seriously and I will stay because I have to believe that hope and love are better than grief and fear.

When you talk to my husband (and people like him), look him in the eye. Ask HIM questions about himself, not me. If he can’t answer them right away, let it be awkward…for the sake of treating him like a human, let it be awkward. If he doesn’t know, he will tell you. Don’t assume he is a weirdo or dumb, you don’t have to be scared of him. If you have a question or are curious about what happened, ask him. We don’t mind. We’d rather have you ask than stare and whisper. For God’s sake, don’t stare and whisper. We can see and hear you over there.

I want you to know that we had a great marriage, one of the best. I am thankful that I don’t have any regrets. We loved, period. It was easy to laugh at each other, be quick to listen, slow in anger, and compromise. He loved me well. I do hope for that once again. At 28 and 31, we have a lot of years ahead to learn how to get there again.

Now, go hug your spouse.



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