My husband caught me off-guard last night as I listened to him shifting and rustling beside me, signaling the beginning of another long night of TBI-related sleep deprivation.
With his back to me, he asked, “Do you remember what I was like? You know, before?”
I sighed, uneasy about venturing into such emotionally laden territory at a late hour. Did he not already know the answer this question?
“Of course I remember what you were like,” I replied, gulping back the instinctual urge to tear up I experience when discussing my husband pre-injury. “It’s starting to fade a little, but mostly I remember.”
“Oh,” he said quietly. “Because I don’t.”
I knew what he needed to hear. He was pressing me for information, breadcrumbs to help paint a picture of the person he once was, but I really didn’t want to say more. I don’t readily open the vault of memories I have of the man I’ve been grieving for the past three years. I have found ways to make peace with his absence, but that doesn’t mean I still don’t miss him every single day.
TC doesn’t remember who he was. It’s a terrifying notion, but one that explains how a person can change in such subtle and unexpected ways and with such little awareness of the process. As he struggles to make sense of our lives and the events in it, he truly doesn’t know how he might have perceived or reacted to things in his pre-TBI life. It’s hard figuring out how to bury the old TC, that man I loved so much, while resurrecting him enough to help the new TC regain what was lost.
In my blog, The Not-So-Secret Confessions of a Caregiver, I wrote that not all days are good ones, a statement that has proven particularly true this month. Some weeks we skip through life checking off items on our to-do list, and we remain busy enough that TBI plays only a minimal role in our daily consciousness. Other weeks it feels as if we’re trudging through mud, exerting enormous effort, but we’re completely unable to move forward. All we can do is get down and dirty with our emotions as we reflect on the circumstances in which we’ve found ourselves. This usually involves at least one knock-em-out-fight-to-the-death as we cry buckets of tears and try to sort through a lot of anger we’re able to direct nowhere but at each other.
It’s a spiral of grief - acknowledging our lost dreams, owning our loneliness, and wishing so badly this thing had never happened. We could spend hours arguing, mourning, and deliberating, but we always end up at the same conclusion: we can’t change it, but we have to go on finding a way to love each other.
The bad days suck. They suck more than we let on to most people, and they drain us emotionally for days afterward. Perhaps the best way to describe it is this: a once monthly funeral for our former lives. It’s ugly and heart wrenching, but it used to be a ritual that took place on a daily basis, not a monthly one, so I choose to view that as progress.
Not all days are good ones, and sometimes I’m at a loss to explain how or why a bad day has emerged. Often it’s when we’re struggling for grace or sincerity as we welcome happy news for our friends. While we both detest the concept of envy, it takes a lot of strength to ward off resentment about the time and opportunities stolen from our own lives. More frequently the bad days emerge after a prolonged period of stress and exhaustion, two very familiar concepts to other young families. Sometimes the stress is discernible - a leaky roof, an unexpected bill, etc. – and sometimes it is just the stress of having been stressed for so very long. Even on the happiest, lightest days, my mind is still preoccupied with concern and worry about TC. Will he slip while walking in the rain? Will he be able to speak well at today’s meeting? Will he fatigue himself trying to do too much around the house? The worries are endless, despite hard-earned logic reminding me that it is rarely the things we devote our worrying to that end up knocking us down.
And then there are the bad days for no clear reason. It could be as simple as a memory of easier times flashing briefly in my brain, or a moment in which I count the decades remaining in our lives and wonder how we’ll ever have enough energy to survive it. It could be that brief moment, watching my husband trying to unload the dishwasher with his weak right hand, which just pierces my heart, reminding me of all the pain we’ve endured. It doesn’t have to take much. The reminders of our struggle are everywhere, everyday.
I give our family a lot of credit for how upbeat and determined we’ve remained in spite of things. We are not living a life of bad days. But I also want to acknowledge the monthly funeral, the not-so-good days, and the moments of defeatedness, as these too are part of the natural TBI landscape. The heaviness is inescapable, but it is the only pathway to the light.