Last week, I bought the memoir, Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out, by Claudia Obsorne, for a friend who’d suffered a serious head injury. I thought it might be good for her to read about someone who understood what it was like to suffer a TBI (traumatic brain injury), who could describe what it felt like from the inside.
The book arrived in the mail. I figured I’d glance through it before I wrapped it up and gave it to my friend. I read the first two pages and was totally hooked.
Claudia Osborne was a successful young doctor, with interns following her on rounds, waiting for her to dispense wisdom. She had an excellent job and a huge, promising career ahead of her. Then one day, she was out riding her bike when a 20-year-old driver hit her, flipping her over her handlebars. She landed on her head and was rushed to the hospital, eventually waking to a massive head injury.
Osborne’s book charts her first two years post-injury as she goes through an intensive rehabilitation program. Her task is to come to terms with the extent and nature of her injuries, while developing compensatory strategies so she can succeed at the simplest things. She has to repeatedly learn to put her shoes on after her pants, to shop for dinner in a grocery store without leaving her cart behind. Taking a bus (having the right change, knowing her destination, getting off at the right stop) or even leaving her house without locking her keys inside are major undertakings.
As a reader, I rooted for Osborne as she struggled with adynamia, disinhibition and flooding, the three most common organic behaviors associated with head injury.
In adynamia, the patient loses her drive and appears apathetic. Her responses to others are flat and dull. There is slowed mental functioning, a marked decrease in ideas, and activity is rarely self-initiated.
With disinhibition, patients are unable to control impulsive behavior—they speak and act without considering the consequences. They appear impatient, are quick to anger or laugh. They interrupt, say inappropriate things, and are unable to respond successfully in the simplest social situations.
When a patient floods, she becomes overwhelmed by sensory stimuli and awash in emotions. Thought processing slows while the ability to process language diminishes dramatically. The patient experiences disorientation, confusion, and an incapacitating sense of helplessness. Flooding can be caused by external events, like the pressure to make an immediate decision, as well as internal pressures, like a premature desire to return to a previous level of functioning.
In her memoir, Claudia’s biggest challenges are not these devastating deficits; it’s accepting the extent of her disabilities. Throughout her first year in rehab, Claudia continually underestimates the scope of her injuries and their implications. She can’t let go of the dream of who she used to be. Convinced that a return to her medical career is just around the corner, she cannot face the reality that she will never be a doctor again.
Although I have not suffered a TBI, I have been through the trauma and uncertainty of cancer. My body has been through extensive chemo, radiation, surgery, and the assault of multiple medications.
For the most part, I’ve handled the existential crisis of my illness with grace. I accepted the crisis I was going through. I didn’t rage at my cancer. I didn’t rail at what I was losing. I surrendered to my illness, curious and open to what cancer would bring into my life. I saw cancer as just one more life-altering event in a long series of life-altering events. Diagnosed at 50, in the throes of midlife, I was open to having my life altered.
I’m 53 now. It’s been almost two years since toxic chemicals dripped into my veins. As far as I know, there is no cancer in my body. I am healthy and doing well; my check-ups and mammograms are routine. I know cancer could return at any time, but I am not living in fear that it might happen.
My family, friends and students look at me today and assume I am fine, that I have recovered. I have successfully stepped back into my pre-cancer roles: parent, daughter, teacher, breadwinner, partner, friend. I maintain my own business: updating my own website, creating my own newsletter, teaching classes, editing other people’s writing succinctly and effectively. I regularly complete long ragged lists of things to do—whether it be planning Lizzy’s birthday dinner, designing a workshop on dialogue, arranging a special event, or preparing to teach a memoir retreat. I keep the car full of gas, bandaids in the cupboard, food in the refrigerator. I manage to show up at potlucks with something both nutritious and yummy. I pay my bills on time.
Externally, the consensus would be that I’m functioning well—and I am. I am far less anxious, driven, and future-oriented than I was pre-cancer. I am more present, compassionate, and relaxed. I’m happier. I have a positive attitude about the changes cancer has put me through. I’m grateful for the benefits illness had in bringing about a major spiritual shift in my life.
Yet below the surface of this optimistic picture, I am aware of holes. Of the deficits I carry. Like Claudia Osborn, I grieve for the person I used to be, the person who, as far as I can tell is gone.
Reading Claudia’s story helped me articulate my losses, to acknowledge them, to feel their impact in my life.
I live a passionless existence.
Since cancer, I’ve experienced an emotional flatness. My joy-meter seems broken. I have no libido and I hardly care. My creativity, once a powerful, rushing river, has slowed to a trickle, if that. I rarely feel inspired, and when I do, I don’t have the energy, umph or desire to follow through on my ideas. They arise and pass away. I go back to my daily or weekly routine.
Pre-cancer, I wrote and published seven books; now I begin stories, but cannot end them. I can’t sustain enough concentration to finish anything longer than a blog post. To write books, you have to have a deep faith in your message and in yourself as the messenger; I no longer have the hubris to believe that what I have to say is important.
My mind, once a great source of joy and pleasure, is now dull, untrustworthy, and mediocre. I can’t concentrate, I can’t wrap my brain around new ideas; my memory is shot. I am incapable of intellectual commitment. To avoid embarrassment and failure, I avoid mental challenges. I stay out of political and intellectual discussions, stay safe within the lines, hiding behind the boundaries of what I know I can still do.
On a daily basis, I manage “the now” successfully. My family and friends say I’m more present and relaxed; they like the new “me.” But from where I sit, the spark that used to make me me, is gone. I miss is excitement, chi, the sense of vitality. I feel as if I am coasting through life, unable to commit myself to anything new, unwilling to initiate, to dive in. I back away instead. I conserve my energy, always holding back.
Yet these deficits don’t show on the outside.
I’m reminded of a time when I was young, when the most powerful emotions I felt barely registered on my face. I could be feeling desperate and suicidal, and no one would knew.
Still, I feel like no one knows.
As you read this, you, in fact, might be saying, “But Laura’s doing this. Laura’s doing that.” Just look at all the things in her newsletter. And objectively, yes, that is true. Within safe boundaries, I am functioning well.
Now, I’m just trying to tell you how it feels. It feels empty. It feels flat. It feels lonely. I’m missing a part of myself that to me, always felt like the core. There is no big, creative force inspiring me to the next thing. There is no spark. There is no excitement. It is as if my life is on hold.
I miss the feeling of being passionately wrapped up in creation.
Up until now, I haven’t cared. I’ve been content with the status quo: teaching and family life. I haven’t had the energy, will or staying power to do more. I still don’t. There is a wall inside, something that stops me. That protects me. Yet I seem to have reached the point in my post-cancer recovery where just being grateful that I’m alive is not enough. I want to feel passionate engagement again.
“I would love to be that woman again, but she died in 1988. While I shall always miss her, I do not idealize her. She wasn’t much fun. She steeped herself in her work and was often unavailable for her friends and family; she was so attentive to her patients’ needs that there was not much left for herself. She could not paint and she wrote nothing that was not medical.
“I began to value the fledgling parts of the new me. I learned to use a new yardstick in an old world while others continued to measure my performance against their memory of me and weigh their losses.”
–Claudia Osborne, after rehab