On the 18th of August, we revisited what is the fourth anniversary of my husband’s brain injury. As the day crawled nearer, I felt the gravitational pull of this mighty event drawing me back to a familiar place: my moods became darker, old memories resurfaced, and I was a little more tender than usual. Most days I look around at my life, a happy and hard earned reconstruction, and I tell myself, “This event no longer has power over you. You are OK.” But for a few days in August, I can’t help but look back.
We are living our new normal, and it is better than I could have ever imagined during those first weeks and months post-TBI. I lost the husband I knew, but parts of him gradually returned. We fought for our marriage, and we’ve managed to hold on. Our son, just 21-months old at the time, is now an awesome and confident 5-year-old. And at the end of June, we welcomed our daughter, Rosalie Grace, into the world. With a lot of love (and help!), we have made many beautiful miracles in the past four years.
I know I’ll never stop wanting it all back - a husband with a clean bill of health, a partner whose verbal communication isn’t limited or confused by aphasia, the days we lost to hospitalizations and therapy. I’m human, and we humans always want just a little bit more than we have. But I’ve learned to keep my expectations in check by revisiting them frequently and being honest about how I’m managing.
I don’t utter that popular phrase, “It’s not fair,” anymore. After all, I don’t feel entitled to complain much about my life. I know we are living well in spite of our challenges. With a new baby in tow, however, the dynamics have shifted in our family. These days my attention is in high demand. When I find myself with only one arm available to type, eat, prepare dinner, etc., I have to bite my tongue from verbalizing frustration. After all, my husband hasn’t had the full use of two arms in nearly four years, and there are no breaks from his limitations. It’s wonderful being a new mother again, but it’s also taxing, and as much as I struggle to admit it, sometimes I need help. How do I ask more, though, of someone who is already giving their max?
Most caregivers have found themselves at this crossroads: trying to balance our own needs with that of our loved one. We feel guilt for wanting, needing, or demanding more from someone who has had the misfortune of suffering a brain injury. TC’s limitations are not his fault, but they’re not mine either. So how do we find “fairness” in this new normal?
If you’re like me, your natural inclination is to take your own needs and shove them as far back into a mental closet as you can. You may even try locking the door of that metaphorical closet and tossing the key into the trash. But here’s the problem: you are a human, not a machine. Your needs will always exist. And the more we try to hide and deny truths from ourselves, the more ill and disconnected we become in our lives. It seems honesty may truly be the only policy when it comes to making sure caregivers receive care too.
In the world of brain injury, the closest we will ever get to fairness is achieving balance. Some days you get what you need and other days you don’t. For us, day-to-day circumstances dictate where our energy and attention lie. Our balance is always in flux. And on those draining, overwhelming days in which both of us need more than we can give, there is no choice but to keep our pride in check and utter those critical words, “I need help” to our network of supporters.
No, what happened to us four years ago wasn’t fair. But it also wasn’t an unshakeable destiny. Life has continued, and we continue to work hard to find a balance that works well for all. If you are at the beginning of your brain injury journey, the concept of fairness may feel especially pertinent. You may be wondering why this injury happened to you, and what you did to deserve it. It’s only human to search for the reasoning behind things. I hope, however, that if you’re struggling to reconcile what is fair in this world versus what is true, you’ll remember that it is absolutely possible to live a happy life after TBI. When it comes to brain injury, there is no such thing as fair, but that doesn’t mean you won’t find your way back to balance.