I did not know this pain would rise today*

Winter, a few years ago

It’s hard to believe it’s almost been 3 years. Right now, it’s been 2 years and 9 months since my traumatic brain injury happened. That’s a long time to be out of the rhythm of “normal” life and scrambling daily to get back. Today, the freeze descended — being stuck in the crashing currents of emotional pain that by all rational accounts have passed but that reactivate, thanks to PTSD.

Two of those years ago, December 2015, I was in the midst of constant migraines and a host of other symptoms. My mom had been in a car accident at the end of that November and had sustained what is known as a mild TBI. That was not the most immediately pressing of her injuries, since she had 6 broken ribs and a lacerated liver, sending her to the ER.

The first night she spent in the hospital was the most excruciating of my life. My injury had severely compromised my ability to regulate my own emotions, and my brain could not withstand the trauma. “This is hell,” I thought, and I knew that this is what hell must be — an ocean of emotional wretchedness the depth of which could not be fathomed or contained.

Because of my intense mysophobia (fear of germs) at the time, I could not go to the hospital to be with my mom, and I obsessively worried that she might die overnight. In the dark December twilight I watched the grim Cary Joji Fukunaga-directed Jane Eyre. Not surprisingly, the grotesque scenes did nothing to distract me or ease my pain. I lay in my bed incapacitated, my dad at the hospital and my sister nursing her wounds elsewhere.

When my mom came home, I became her caretaker for the next six weeks until she was well enough to return to work. In great pain from the rib fractures, jaundiced from the liver injury, and weakened from the blow, she could not lift herself from sitting to standing without help. Friends and neighbors blessedly stopped by, bringing meals and warm wishes.

Still these visits rubbed salt in my own active wound. I had been bedridden from March onward since my injury. Through necessity and force of will, I dragged myself from this migraine-and-bed ridden state up to care for my mom. I knew that she was more injured than she even knew herself to be, and I knew what her care required — plenty of food and drink, emotional support, movement to the bathroom, company and lots of Great British Baking Show viewing.

The day after my injury, my best friend brought me ice cream. Other than her, my assigned home and visiting teachers (in Mormonism every person in the church has two male and two female friends assigned to check up on them and bring physical and spiritual nourishment once a month) and an in-home health aid my parents had hired for a few months to help with rehabilitation, no friends stopped by to see me that year, the year that I spent entirely in bed, except for attending doctor’s appointments and attempting to enroll in law school.

It stung.

I could understand these visits for my mom; after all, 6 broken ribs is severe. Anyone, too, can understand a broken bone or a car accident. My broken brain, though, which had turned my entire life and identity upside down into a nightmare of pain and disability — necessitating that I quit driving and my job, avoid all social engagements due to overstimulation, desperately search for medical remediation for a condition still considered “mild” by the medical establishment, and live in a daily morass of depression and chronic pain while reconstructing my most fundamental identity — did not merit any immediate care, any attention.

It’s no one’s fault that they did not know. My attempts to explain the extent of the damage weren’t fully understood by my own family, people I see every day and who know me better than anyone. How could friends and acquaintances grasp the extent of these injuries? I looked great! I was so out of my mind because of the intricate damage to the networks of cells that consitute my identity and mental architecture I had no energy or wherewithal to communicate any need. I’m sure I received more care than I could recognize at the time, but the damage carved so deep I couldn’t feel the help. It was so beyond my brain’s ability to reach out of the fog, and I felt so far beyond the help of anyone.

I didn’t even fully know how to communicate what that need was. People aren’t mind readers, and just posting something about brain injury on Facebook won’t necessarily elicit any help. People don’t know what those statuses really mean, day to day, and every single brain injury is different, with variable symptoms and recovery times.

Plus, some people don’t behave well around brain injury. I have told people I have a brain injury, and they have actually laughed in my face, including a doctor I was socializing with. Others have said unhelpful, cruel, insulting things, such as “I guess you’re just as smart as the rest of us now.” What the actual heck. I think it’s kind of like what kids do when they see someone fall on the playground. The first response is to laugh to insulate themselves from feeling the weight of their own emotions about the pain. Kids who laugh at someone who trips and falls are not callous, they might actually care abnormally much and not know how to deal. Or maybe they just really don’t understand. Pratfalls and depictions of brain injury are common in Hollywood, football is our national bloodsport, and I’ve never seen a movie about someone who becomes chronically ill after one ill-fated blow to the head so awareness is low.

Because of this altered state of mind and cell-deep fatigue, I didn’t feel like I could reach out to anyone and say, “Hi, I need a friend to sit with me today. Could you come?” How utterly humiliating to not be able to meet even your very most basic needs and to be confined to bed when you “look fine.” How devastating to have lost even your will to live and be embroiled in emotional struggles that make you cry for hours a day like an infant. I was obviously not very accepting of my own limitations, and although I took adequate time to rest, I still pushed myself to return to normal way sooner than I should have and without having been properly treated.

Silently I screamed. I yearned for someone, anyone, to rise to meet the need, to know what having a brain injury really meant and to enter that place with compassion.

I peel the layers of this wound with gauzy gloves. Again and again I see her raw, pulsing flesh. The emotional pain rises unexpectedly and unbidden. Who would have thought that today of all days I would see that particual slant of light that early December brings and remember the silent scream, remember the tears that might as well have been drops of blood from my very heart.

*Written about a week ago.