Spaces

Spaces

Yesterday I was riding along taking in the autumn air, intently listening to Ben Howard sing about the spaces between the happiness and the hardness. Those lyrics struck an emotional cord reminding me that we live in those spaces. In our case, still learning to survive the aftershock of traumatic brain injury.

As a survivor of this type of emotional trauma, I distinctly define the before and after. Everything was profoundly different in the before, and now we exist in the after. I can almost see the marker in my mind.

This is what the after looked like a few nights ago: Taylor was standing upright in the kitchen, his dad behind him, holding him up, having noticed a seizure starting.

They stood in an unsafe spot with granite countertops, dishes in the sink, the stove, pots, and pans. Keith calmly tells Taylor, “It’s okay bud, I’m right here.” I am immediately glad no one else is home.  I hate this moment. I run into the bedroom with the strange calm that has become part of my norm, grabbing a pillow and blanket, then I return.

Taylor’s head jerks hard to the right, and his legs are locked. His arms are cranked up tight, and I hear the saliva in his mouth. We need to get him on his side, but he is big. As his legs give way, I know this isn’t going to be a quick episode.

Finally, we situate Taylor on his side. I see him, wearing his Superman shirt, smelling clean and fresh, and looking vulnerable. Seizures are Taylor’s kryptonite. His body tenses up further as he draws into a sort of fetal position. His legs and arms simultaneously start jerking, rhythmically hitting the stove and cabinets. Keith is near Taylor’s head, reassuring him, and I am tucking the blanket where I can for safety.

The blanket is soft and thick. Our friend made it for Taylor right after his fall. He sleeps with it every night when it is cold. Blankets are made to give comfort, but not like this. My mind quickly snaps back to reality. This seizure isn’t stopping.

Every single time the seizures get to this level, I think, “What if he doesn’t come out of it?” After four years, I am still not used to these frightening episodes.

After what seems like an hour, it subsides. Taylor can’t talk; he can’t get up, and so we attempt to make him comfortable on the hardwood floor. We assure him that he is okay.

The first thing he says when he manages to mumble is, “This is going to push back when I can drive.” He starts counting the months. Taylor’s license was revoked after his fall, per state guidelines.

It is a while before Taylor can lift himself up enough for his dad and me to get him to bed. As is the norm with a seizure of this magnitude (for Taylor), his entire left side has shut down. We manage to get him in his bed; he takes his medication, and we say goodnight, leaving his door open.

The next morning is my birthday, and I feel the weight of the previous evening. The memory of the night before was the space of hardness that Ben Howard referred to, but I want to enter the space of happiness.

The last “happy” I felt on my birthday was years ago. Holidays and celebrations of any kind have become difficult. I feel this tremendously heavy weight in my heart during them.  It is the weight of grief, suffering, and perhaps the profound distinction between what was and what is.

As I wake, I notice my head is throbbing. I crawl out of bed and come out to the kitchen where Taylor is standing with a smile. He says, “Happy Birthday, Mom. Do you want me to fold the laundry or do the dishes?” Then he says, “I am sorry I didn’t get you anything, but it’s hard since I can’t drive.” I am not at all a morning person, but I hear the innocence in every word, and try to give him the right response. I sense how much he loves me, and it touches me. He wants my day to be happy too.

Happiness sometimes requires work.

I drop Taylor off with a friend for the day and start my commute. I call my mom, and realize the call might be a mistake. I am angry and sad, and probably shouldn’t be talking to anyone. I feel the unfairness of it all, and I think about what Taylor’s accident means for me, and I feel afraid. Not only has Taylor’s life map changed but so has mine.

I want to express to my mom how much I am hurting, but I can’t really get the words out in a way that makes sense. I feel bitterness creeping in, and I am afraid that my special day is going to feel more painful than the day before. I am not only angry that this happened to Taylor, but I recognize anger that it happened to me.

The day moves forward, and it does not feel easy. As my co-workers wish me a “Happy Birthday,” I feel anything but happy. I want to cry. I want to scream. I want to pound my fist against the floor and stop the unfairness of it all, but instead, I smile. Sometimes in the space between, we pretend to be okay.

Around noon, things start to shift. I have an honest conversation with a friend, and when I speak my truth, the sun shines a little brighter. The day ends having had kind words from friends and family, a huge sunflower balloon and sweet card presented by Taylor, and opening a few really thoughtful gifts after dinner out with my husband. By nightfall, I measure more happy than sad in it, and realize that this is worth celebrating.

Comments (2)

This is my life daily. Angry, yet thankful; encouraged, yet disappointed; exhausted, yet determined. My life is no longer my own. Caregiving is permanent. Love is as well.
look in the mirror once a day and say to your self "You is kind. You is smart. You is important" I'm on the other side you need to do some self care on you. It is important. we have had counseling and we now realize it is ok want a day that is injury free. I'm a single mom with an adult child (21) I am TBI survivor. Fortunately my son has only seen my milder seizures. Please take care of you. please look into CBD medicine for your son it has been a miracle cure for me and countless others.