Several months back, I was having a particularly difficult day in my world as caregiver, mother of TBI survivor, full-time caseworker, and professional wearer of too many hats. That day, I sent an email to my brother trying to convey how desperately hopeless I was feeling. I wrote something like this, “I really don’t know if I can do this anymore…whatever “this” is. I am beyond tired, angry, frustrated, and sad.”
My big brother knows me. He understands that if I hint that I am drowning, I am not crying wolf. When I get to the point of admitting that I am not okay, I need support, and he offered it to me.
He responded with an answer that surprised me but would prove both healing and practical to my weary soul. In a sense, I was asking, “How I am going to do this?” His response was that I should embrace the suck.
We are southerners, my brother and me, and this kind of uninhibited chatter was unusual between us. Embrace the suck? What exactly did he mean?
The advice was short, and ended sweetly, but the concept had depth and substance. We live in a world of platitudes. For example: “God gives his toughest battles to his strongest soldiers.” Or, “The darker the night, the brighter the stars.” For me, those words don’t help much when my brain injured son is exhausted at nine p.m., hates the world, and asks me why the hell he survived the night of his fall. They didn’t help when I would tuck him in for three weeks straight, and he would explain to me that I could shoot him if I really loved him. And they don’t help now when he is smiling, happy and enjoying an evening with family, and suddenly walks out on the porch and has an unanticipated grand mal seizure. I hold him and wonder if he will wet himself, if he will remember, and how much of an emotional setback this will be.
Embracing the suck is about realizing that with an injury of Taylor’s magnitude, we are not going to be dancing through the daffodils. We may not have time to stop and smell the roses, and our tongues will tire of biting, and our minds grow bitter at having to witness all of the consequences, but we will get through it.
This is the darker side of brain injury, and luckily not every family has these dark moments. However, many do. A lady called me once to vent her frustrations and shared with me that when her TBI survivor husband got angry with her, he would reach in the freezer and launch at her head whatever frozen meat was at hand. They obtained outside help, but for months she suffered alone. TBI can be ugly. Other mothers, spouses, and family members have called me frantically asking how I survive our hell, in hopes of getting through their own.
Within the family of a brain injury survivor, relationships will be stretched and pushed beyond normal limits. Any life altering situation puts new stress on a family and shifts the way things used to be. Part of this process is understanding that not everyone is going to be able to accept this new person, and how their injury plays out, and that is not their fault or the survivor’s fault, it just is.
Embracing the suck is about having some mental clarity that can acknowledge a few truths. The wise saying, “Denial is just a river in Egypt,” holds deep meaning.
- Brain injury is harsh. Survivors may have weeks, days or moments where it all feels like too much for them. They are bound to take it out on those with whom they feel most safe. For the most part, I see where Taylor’s exceptionally harsh words are coming from—his broken brain.
- As a caregiver and mother, I don’t have to like Taylor all of the time. In fact, there will be days where I don’t like him; that doesn’t mean I don’t love him. It means I hate his injury, and what it has destroyed. Let that voice be heard, the one that admits the absurdity of brain injury.
- Part of surviving comes with knowing when to reach out. Admitting that you are struggling is half the battle. Victories are won by recognizing our opponent’s strengths, and our weaknesses. In some ways TBI is stronger than us, we have to set a plan in motion of how to gain ground where we can, and part of that comes with acknowledging that you are not perfect in your pain. “Perfect pain” is on the Hallmark channel, but it rarely plays out in real life.
In closing, I want to share the exact words my brother typed to me. I have them hanging in my office, and I read them often:
“You embrace the suck. You adjust your mental sliders of good and bad, so you don’t go bonkers. You move in as small blocks of time as needed to get through whatever you’re facing at the moment. Will tomorrow bring more of the same? Probably. Will it be a little better? Hopefully.
What would make tomorrow worse? If YOU were not there. You make the now and the tomorrow better. You are that big tanker fueling everyone else with hope and love. Who fills you up? I don’t know; maybe it is all within.
Put more simply: How do you keep moving forward? BECAUSE YOU MAKE A DIFFERENCE, because you are the difference to so many.”
As we move forward together, in caregiving, in supporting the survivors we love, and in trying to support our own self-preservation, perhaps embracing the suck, is far wiser than denying it.