A Living Grief

It wasn’t until several years after my TBI my mother commented to me that there are worse things than death. She confided, it’s one thing to have your child die in a car accident, but it’s another thing to have your child sustain a brain injury and live. I was speechless—not only because I was still unable to move my tongue to articulate, but I couldn’t believe what had just come out of my mother’s mouth. Was she saying that it would have been easier if I had just died that August night in 1989? I simply nodded my head in compliance.

It is difficult to rationalize emotions. I now know what my mother meant. I was still present in her life, but the child she had known for sixteen years was gone. I was alive, but not really alive, not my “self.”

My mother was experiencing a living grief. My soul, my personality, died the night of 8/29/89, but my physical body managed to live. As a result, I would never be 100% the same.

Worse than death?

In hindsight, my mother really wasn’t talking about me or my new reality. Rather, she was referring to the individuals she had seen, day after day, at the rehabilitation center, who sat in wheelchairs with blank looks on their faces, day after day, unable to communicate.

These were the young men and women whose physical and mental conditions “literally broke [her] heart.” Some eyes fluttered around the room, while other eyes stared straight ahead. Many smiled, while many did not; their faces showed no signs of emotion, no signs of recognition or comprehension. All wore diapers and had to be waited on: fed, bathed, dressed, groomed, and put to bed.

My mother wondered if these young men and women were as “dead” on the inside as they appeared on the outside. We never hear about them. Their stories never make the 5 o’clock news.

To my mother, their realities were worse than death. She knew if this had been my life she wouldn’t have wanted me to live. My mother refused to believe that their realities would be my reality.  My mother, as usual, got it right.

My mother’s emotional response was completely authentic, even though it may not have been politically correct. The thought is inconceivable—to actually wish your child dead.  But to my mother, these young men and women were not living, at least not a functional life.

Long-lingering grief

Even twenty-four years later, my mom has difficulty talking about my TBI and what happened to me. She doesn’t believe it’s good for me to hear how she felt or how she still feels. She won’t talk about it unless forced. My mom’s life irrevocably changed when she answered the phone at 2 a.m. Her mind set itself on autopilot. Her actions were mechanical. Her complete focus became me. For many weeks, she couldn’t eat, sleep, or drive a car.

When I was in the ICU, she spent every night at the hospital. When I was out of intensive care, she came to the hospital every morning and left every night—only to return the next day.  Her days were cyclical, habitual.

Once I went to a rehabilitation facility, she came every morning and left once I was put to bed—only to return. It was the only way she could handle the situation. This was how she dealt with her grief.

She grieved not only because she couldn’t make me better or well again; she grieved because she couldn’t trade places with me.  She still grieves because I am not the “charmer” I once was. I know my mom wishes my life had been different and not filled with so much pain, so many obstacles. It’s not a life’s path that you dream for your child. She told me, as my mother, this is something she will “never get over.”

She grieves for the person I never had a chance to become; the husband I never met; the children I never had; the life I never got the chance to live—the life I lost. I grieve over those same things.

A parent’s grief

Two spectrums of grief

There are many dimensions of living grief. My mother and I experienced two spectrums. My mom’s grief is the living grief experienced by a mother for her child who did not die, but lived through a brain injury. My grief is the experience of brain injury.

I now live with a brain injury—it will never go away. It has taken over twenty-four years, but I’ve come to accept this. I’ve tried my best to move beyond this obstacle. My mom told me that she is “very proud of [my] determination and…many accomplishments.” She believes it was “this drive and determination that the accident didn’t take away.” I wouldn’t be where I am today without it.

I have had to find a way to move beyond my living grief and learn to live again. I can honestly say, this is not the life I had wanted, the life I had imagined for myself. I had dreams for my future. I can honestly say, TBI wasn’t supposed to have been a part of it.  I think I can safely speak for my mother, too, when I say this.

Dr. Katherine Kimes is the president of ABI Education Services, LLC, a business focused on providing consultation, training, in-school support, and transition services to children, adolescents, and young adults with acquired brain injury.