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
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
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 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
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.