When I was 11 years old, I experienced an arteriovenus malformation (AVM) bleed. Due to the AVM‟s size and location deep in the thalamus of my brain, I was fortunate that only the left side of my body was paralyzed and the nerve controlling my vision was affected (leaving me with what I have come to call “double-vision” in my eyes). In the years following this stroke-like injury, I’ve undergone physical, occupational, cognitive, and nearly all other therapies to rehabilitate and gain strength in the left side of my body. One round of radiation eliminated much of the AVM in my brain, and one eye surgery has helped repair some of the damage to my vision.
Through the years of physical and emotional recovery, I’ve experienced countless doctor appointments, hospital visits, consultations, diagnoses, types of social support, and attempts to communicate my changed identity to loved ones, friends, and doctors.
I once counted that I had 17 doctors and medical professionals. Can anybody else out there with a medical A Team?
I’m not the only one who’s had to struggle. Hundreds of thousands of individuals experience brain injuries every year; the cycle just continues.
From struggling physically and emotionally, to years of loneliness and coping, to meeting and hearing from other brain injury survivors, this blog is a place where I’m sharing memories, experiences, stories, my own developing narrative, and even occasional advice (varying in seriousness). I’m also sharing other people’s experiences, who have kindly allowed me to use their stories to shed light on what it’s like reconstructing identity after surviving brain injury. The stories range in emotion, but the experiences are stitched together by a common thread of realness and truth.
From my thesis research, I specifically found that brain injury survivors tend to experience 4 different aspects of identity reconstruction following/during brain injury and recovery. I’m sharing these themes with you now and expanding on them in future posts:
1. “I‟m still grieving”: Communicating grief for loss of the former self
2. “That doesn‟t work for me”: Searching for social support
3. “The brain injury society”: finding social support
4. “I‟m not broken”: Resisting [reconstructing] the disability label
Book-ending these four categories are communicating a liminal identity (feeling in-between the pre-injury and post-injury self) and communicating the ongoing changes that are inherent with surviving brain injury.
Can you relate to any of this? Let me know what you want to hear more about, and I’ll start there!
Talk soon. x