by L.H.
an·o·rex·i·a
What is in a name? they say.
As a child this name brought troubling images to mind. It made me think of the glossy tabloid magazines I spied as I stood in line next to my mother at the grocery store check-out.
A word not often spoken aloud or acknowledged.
Fast forward a few decades with my childhood a distant memory, firmly rooted in adulthood and feeling hardly rooted at all.
As if detached from my body I see us standing in the parking lot: my husband, my daughter and I. The word echoing in my mind, looking for a place to settle.
Months of doctor’s visits, therapist appointments, phone calls – all in an effort to avoid this place we now found ourselves in.
The word still won’t settle.
“A-typical,” he had said. Somehow that qualifier gave me some solace. Not typical. It wasn’t standard, what you would expect.
Maybe we would be absolved of something as her parents, I thought, although of what I still hadn’t figured out. Not once had anyone said: This is Not Your Fault. Surely it had to be.
“What does that mean?” my daughter had asked me, seeming less comforted. “That I’m not that sick?” Maybe not, I had hoped.
But oh poor girl, you were!
Sitting alone at the kitchen table a different thought began to settle in my mind. Maybe my dear girl is the canary in the coal mine that is our family. Maybe we are broken. Maybe we broke her, I thought.
I must be the Wrong Kind of Mother, I had said to the outpatient nurse through tears. She had been kind and sympathetic and it cracked me open.
I confessed all of my efforts and how they still had not had been enough. Another kind of mother would have not let this happen, I told her.
But the nurse saw a good and caring mother and she responded in kind.
Fast forward a few more years and here we stand, feeling rooted and beginning to flourish once again. Getting here should not have been this hard. We needn’t have been hindered by the question of blame alongside the shock of diagnosis.
We are grateful for the wisdom and support of other caregivers who walked this path alongside us, kind souls we have never met but who helped guide us and became our community for a little while.
Even now as we move forward I still don’t like to speak your name aloud that much. Would an illness by any other name be less of a burden for a family to bear? I can’t help but wonder.
One day I hope we can all share our families’ journey with illness, by any name, and with the understanding and embrace of our communities collectively watch” the torment of stigma crumble like dust in the wind.