I have a confession.
I experience inner turmoil on an almost daily basis. If I am not fighting back
my own expectations or my perception of others' expectations, I am mourning a
loss of what was or what I felt should have been. I fear so many things and one
recent fear was my trip to Banff, Canada for The Brain Cancer Symposium.
I kept telling myself that I should be excited about going to one of the most
beautiful places in North America, but my reason for going scared me. This was
where researchers from various countries would reveal what they have learned
about the deadly cancer that took my ten year old daughter Emilie's life. This
was where families who lost their own children would gather to shed tears but
in the midst of those tears would reassure each other that their efforts to
fight cancer matter. This was where both worlds of researchers and families
would collide--a collision that would open up for me pain that I simultaneously
wish to feel and at the same time wish to avoid.
Emilie's death created for me this dimension where she is there but not
there--a veil of sorts where I visit in my mind but it feels dreamlike,
otherworldly, muted, untouchable. When I go there, I too feel muted, untethered,
invisible to the rest of the world and visiting this place is draining. I feel
exhausted when I return to the living because it is hard to breathe there. It
takes all of the strength I have to hold space there, yet Emilie is there, and
I want so desperately to hold space with her no matter how tenuous the
connection.
So going to the symposium was like running straight into that veil of
grief--reminders of what was and what so painfully is not here. However, at the
same time, visiting that grief awakened something within me--a sense of
purpose--a need for change. It taught me that so much good comes from facing my
fears head on. Usually either some profound truth emerges or something sobering
and beautiful reveals itself in the midst of the tragedy. I found that
connecting with other families at the symposium helped them to feel seen and
understood and in turn helped me. I talked to researchers who through their
work may become the next Fleming who discovered penicillin or Salk who
developed the polio vaccine. I expressed
to them how important it is to keep working even when they hit brick walls in
their research. I helped give them a
face, a real life story to their efforts.
I hopefully helped them to understand that their efforts provide a beacon
of hope to families out there who are desperately seeking that miracle cure for
their children. That hope allows
families to keep moving forward and to not allow the very real possibility of
their child’s death to take them under while they are in the fight. These researchers are our lifelines, our
lighthouse, our safe harbor. We know they
are searching for a cure and that they will continue to keep a lookout for the
cure, and that keeps us going. That hope
helps us to breathe in the land of the living again.
So here I go. I move forward hopefully with a braver face now that I understand that in facing my grief, I discover direction and wisdom. So many discoveries of our modern world were once labeled as impossible, and yet, they became very real and very possible. The cure does start now with researchers, with families, with me, and with you.
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