diabola in musica

The memories from the months immediately after the car accident are few and sparse. I remember the stark, bleached smell of the hospital halls. I remember the worried phone calls asking after my condition. I remember the very dark, very cold winter nights.

One of those nights, we were sitting at the kitchen table. They told me that they were so glad that I was still among them. “We thought that we had lost you,” they said. They still had me. I was still alive. But I saw in their eyes a strange mix of emotions. One I recognized easily; that was fear. The other I didn’t recognize until later.

“We hope that you can rebuild yourself.” They continued, “We hope that you will do good things with your life, because of your traumatic brain injury.”

There it was—expectation.

These people in my life, they said very bluntly to my face that they expected certain things from me because of my acquired disability. They had watched one too many TV programs where someone underwent trauma, suffered, and came out the other end a stronger person who gave back to the world selflessly. They thought that I would be a happy person who was so grateful to be alive, I would spread that joy effortlessly.

I was anything but a bundle of joy. The traumatic brain injury left me with poor memory that limited my ambitions. I had to mourn my loss. I had to reassess my cognitive capabilities. I had to reform my social life. I felt anxious and depressed. They asked me why I was so angry, why I couldn’t be the life-affirming, loving, grateful, strong person they read in those recovery stories.

I’ll tell you why: I just suffered a major life-changing event, I wasn’t given the time and space to mourn, and people who had no comparable trauma were telling me how I should own my experience.

I am not your Sunday afternoon special. I am not your magical rejuvenating golden girl. I am not a reflection of your idealist worldview.

I am a person. I am a person with a disability, but I am still a person. How I own my experience is up to me, not to you or your preconceived notions of magical disabled persons.