The thing that’s true about every brain injury is that it happens without warning. There is no preparation, no “easing in” to the idea. Families are not given time to gather their resources or ready their minds for the challenges ahead. Rather, TBI is an explosion – transforming the lives we expected to lead indefinitely into something hardly recognizable. It is shock, on a scale few can imagine.
It’s been precisely five years since the day of my husband’s brain injury – the day I woke up to discover he was missing. In those hours afterward, as I began to absorb the possibility that he might be gravely hurt or even dead, my body went into a state of shock I have experienced only once. My logic got cloudy. My memory started to warp time. My hands shook uncontrollably. I stopped breathing for long pauses without even noticing it. My entire gut shut down and didn’t become operational again for weeks. Just writing about it conjures those feelings of shock once again.
What I didn’t know at the time is that my body was responding exactly how it was supposed to – that my sympathetic nervous system had shifted into “fight or flight” mode as a way of protecting me, shielding me, from the danger it perceived. I also didn’t know that trauma would become imprinted in my mind and body – that it would linger there for months, even years, waiting to be attended to, needing to be healed. In my mind, there was only one survivor in our brain injury journey, one person who could claim it as a traumatic experience: my husband.
For months after his TBI, I carried my wrecked, scarred body along with me, afraid of being alone with myself, terrified of pausing long enough to assess the damage. I had always been a kinesthetically oriented person – a former ballerina, a yoga enthusiast. Now I dreaded the yoga mat. The gym. The shower. Any place I might have to reconnect my body and mind. I did not feel entitled to my trauma. And I certainly didn’t feel prepared to face it head-on. I was a survivor too. I just didn’t know it.
If I could make one sweeping statement about the many caregivers I’ve met, it would be this: we are too hard on ourselves. Most of us have become so skilled at caring for our loved ones that giving has become a natural instinct, something we do without thought. And along the way, many of us have denied ourselves our own healing process.
It’s not that we don’t know about self-care. Trust me, WE DO. People love to give caregivers sympathetic reminders to “take care of themselves.” The problem is that this piece of advice is usually dispensed at the end of the conversation, not the beginning, leaving caregivers to wonder exactly how to pull off this self-care routine and with what support.
Just as no one can write a prescription for grief, no one can write one for self-care either. What a person needs to be able to heal from trauma and cope with grief depends entirely on the caregiver. But however you choose to approach this practice, there’s one tip worth remembering: self-care is not simply the practice of maintaining self, it’s also the practice of healing self.
Whenever I speak with other caregivers about self-care, I try hard to stay tethered to practicality. Sure, every caregiver would love a restorative week in the Caribbean, but for many, there are a dozen reasons that is not a possibility. And for those of us who have been lucky enough to take short escapes from the caregiver life, we know all too well that physical distance alone does not heal. The wounds of a trauma survivor cut far deeper than miles are capable of healing.
Self-care is most effective when we find ways to incorporate it in our daily lives. I give great credit to the following three components of my own self-care routine. These simple, manageable practices have helped me integrate my own traumatic experience and find peace during anxious, intolerable moments.
Even a minute or two of focused, intentional breathing helps to restore order in the nervous system. Yoga has introduced me to a variety of breathing techniques over the years, but generally I like to breath to a count (inhale for five, exhale for five) or sync my breathing to a short mantra (one favorite: trust in the universe). Because breathing is such a rudimentary practice, its value is often overlooked. But there is no single greater thing you can do to calm your heart, quiet your mind, or temper your nervous system than to simply be still and breath.
As a former caregiver and the mom of two young kids, I can say with assurance that there’s nothing I want more sometimes than five minutes alone in a dark room. Preferably I’d like a soft pillow and a glass of wine to go with it, but since this combination is fairly hard to come by, I’ll often settle for a five-minute walk down the driveway to collect the mail or two minutes of laying in my closet with my legs up the wall. All people need space and caregivers just may need it more than the average Joe. Please, survivors, don’t deny yourself a five-minute excuse to leave the room. You deserve it and you’ll be better off for responding to your own needs.
OK, I believe you when you say you don’t have one more minute in your day. You probably don’t! But do you have time to write one sentence in your journal or maybe even one word about your emotional experience at the end of the day? So much happens within the waking hours of a caregiver that the full breadth of our experience is often lost in the hustle and bustle of just trying to keep life together. But it’s much easier to assess progress, to gauge the changes in our lives, when we have something to reference. Whether it’s a one-word journal or, more ideally, a satisfying chat with a therapist or old friend, it’s important to unload some of the emotional weight you carry each day. It bears repeating that this TBI journey is too much for any one person to carry alone.
So, caregivers, yes, you are resilient. Tough as nails and truly remarkable. But you are also human survivors of a life changing, catastrophic event. Please wear that survivor badge with honor. And don’t forget to take care of yourself along the way.