What living in the dark taught me about light.
Transcriber: Minh Trang
Reviewer: David DeRuwe
My brother was one
in a million, literally.
When he was 15 months old,
he was diagnosed
with a very rare condition.
It was a condition that his skin
could not protect or heal itself
from exposure to ultraviolet light,
like the light from the sun,
Every exposure to sunlight
was killing him.
His doctors told my family he
wouldn’t live to see his fifth birthday.
If they had been right,
I never would have met him.
I was born into a world
where I always knew my brother was dying.
I always knew that the sun
was very dangerous,
and our family lived in a strange space
where life involved tragedy and grief,
and yet every moment
was precious and full of hope.
When I was little, I didn’t know
that we weren’t normal.
I knew my brother was different,
but it didn’t occur to me to wonder why
we rarely spent
summer days out at the beach
or why we had windows
with curtains that always stay closed.
It was normal to hang out in hospitals,
riding wheelchairs up and down
the children’s ward and just laughing
and playing and being a kid
while my brother was dying.
There were lots of days in hospitals
because although we did
so much to protect him from light,
it’s everywhere.
Every day in school he was exposed,
not just to sunlight through open windows,
but directly overhead
from the fluorescent lights
still used in schools today,
even in hospitals.
Those overhead lights
were killing him faster.
When every exposure led to skin damage,
which led to skin cancer,
which led to malignant tumors
and surgery and skin grafts,
he’d have two wounds for every fix
because they’d take healthy skin
from less sun-exposed areas of his body
to repair damage
to his face and his hands.
In time, even his eyesight was affected,
and he grew increasingly blind.
In time, he had less and less of his body
and in time, less and less of his mind.
I don’t tell you to garner sympathy
or to raise awareness
for the condition that killed my brother,
I tell you this because I want you
to know that I’ve known tragedy.
I’ve known living a life
that doesn’t seem fair.
I’ve known losing someone precious
whose life, short and full
of hardship, mattered.
That’s what I’m here to talk about:
about why all of this matters,
how the bad stuff, the tragic stuff,
the heartbreaking stuff
that we face in our lives matters.
And more importantly,
how even when we’re living it,
we can choose to trust
that the moments we have in our lives,
the good and the bad, are vital;
that even in our darkest days
when we fear the sun may never rise again,
we can hope, and that hope
for the sun keeps us alive.
You see, my brother
didn’t live in darkness.
Yes, we avoided exposing
his skin to ultraviolet light,
but as we grew up, we’d go out riding
our bikes all over the neighborhood.
He’d be covered head to toe
with gloves and even a helmet and visor
that shielded his face from the light
because life isn’t dark rooms alone.
Life is out there with others
to be lived fully.
We hoped for the light.
But as his condition progressed
and as I got older,
it became harder
to keep laughing and playing
and being a kid while he was dying.
So much of my life revolved
around my brother and his needs.
At the time I was going through
mental health challenges in high school -
I felt invisible.
My brother’s life
mattered so much to everyone
that I started to think
my life didn’t matter at all.
I didn’t know it then,
but I was spiraling so deep
into bipolar disorder
that the highs and lows
could be dangerous.
Because I didn’t think my life mattered,
I stopped looking forward to the future.
I started skipping school.
I started smoking
and stealing and drinking.
I started disconnecting from people.
And the more I did all those things,
the less I felt my life mattered.
The less I believed my life mattered,
the more I thought
I was a burden on my family.
I started to think that the world
would be better off without me.
In the darkest moment of that depression,
I sat with my back wedged
against my bedroom door.
It was late afternoon, but the curtains
were closed against the sun,
and the overhead light stayed off.
I sat in the dark and held a long,
sharp carving knife in my hands.
I sat there,
contemplating that blade
and listening through the fans
to my family in the next room.
It was one of those most ordinary,
extraordinary moments
Outside the bubble of this teenage girl
about to kill herself,
the world kept turning,
my brother was still dying,
my family was still living
their lives as they always had.
My mother and sister were arguing
with each other in the next room.
I don’t remember what
they were fighting about,
but I remember thinking
that my sister was being selfish
because how could she make it all
about her when our brother was dying?
As you’ve already guessed
by my standing on the stage,
I didn’t take my life that day,
because as I stood there cradling
the knife in my hand,
I started to get angry.
The thing my mother and sister
were arguing about
seemed so insignificant.
I just couldn’t fathom how that could
possibly be more important to them
than someone dying, how it could be more
important to them than me, dying.
Because although they
didn’t know I was dying,
I had been a heartbeat away
from taking my life.
I was closer to my death in that moment
than my brother had been all the years
of his life up to that point.
I didn’t die that day,
and nor did my brother.
In fact, we were both
going to live years after.
Every year, his condition led
to more skin cancer that ravaged his body.
Despite surgery
and skin grafts and medicine,
we couldn’t outrun the battle.
My brother lived to be 27 years of age.
It’s about 22 years longer
than any of his doctors ever imagined
for him when he was first diagnosed.
He lived to make friends,
to finish school,
to get his driver’s license,
to spread awareness
for his ultra-rare condition,
to meet his first niece,
to change people’s lives.
The thing my brother’s life
taught me was that it all matters.
I am who I am because of him.
If anything at all had been different,
this would not be my life.
Now, I’m not saying my life is phenomenal.
I’m not a millionaire.
I don’t have a fancy house
or the newest car.
No, if anything, some people
would say my life is nothing.
I’m divorced,
a single mother
of two special needs children,
living with chronic illness,
writing books hardly anyone buys.
But I love my life. I value my life.
You see, I’ve learned
to see the blessings in everything,
even the bad stuff.
That is the hopefulness
I want you to sit in right now.
Bad things happen;
sometimes they’re the little things,
like stubbing our toe
or getting stuck at a red light
when we’re already running late.
Sometimes they’re the big things,
like riots or terrorist attacks
or pandemics that take hundreds
of thousands of lives.
Sometimes they’re the precious things,
like losing the people we love,
but they matter.
It’s so easy to sit in our sadness
or heartache or grief or pain.
Sometimes it’s easy to feel anger
or frustration or hate,
and all of those feelings are valid,
but they don’t really help us
with our lives.
They certainly don’t help us
live happy lives, full of light.
I believe we can change the way
we look at life when things go wrong.
With the power of positive framing,
we can ask ourselves in every moment:
“What comes after? How can my
life be transformed by this?
Why is this pain important?
What is it teaching me?”
When my brother died, I could’ve raged
at the unfairness of it all,
at the unjustness of his life
and the life I endured because of it.
Instead I sat there
in that moment feeling his loss
and I could see the blessings.
I could see how his life
had been a remarkable gift
and how his death, bittersweet,
was also a gift.
I could see the wonderful life
I could go on to live after him,
blessed because I’d known him.
I understood that it was important
to give my family and the people
I love my whole heart
because every moment
with them is precious.
I learned that our lives matter.
When my marriage failed, I could’ve sat
in the bitterness and betrayal
of an unfaithful husband.
I could have resented him and all
the handful of years we had together.
Instead, I saw an opportunity
for us both to find greater happiness.
The pain of failure was important
because it taught me
not to settle for comfortable
when I can dance
outside of my comfort zone.
I learned that I didn’t want
a loveless marriage,
and I didn’t want a loveless marriage
to be the example we set for our children.
When my son was diagnosed with autism,
I could’ve wallowed in the unfairness
of a child who, like my brother,
would always be different.
I could’ve been angry
about how much harder that meant
everything would be in our lives.
Instead, I’ve let myself see
how much my son’s life matters,
how I could become his greatest teacher,
supporter, and champion.
I understood it was important
to let myself grieve
for the idea of the perfect child
I’d once had in my head
because in that grief,
I’d feel the real wonder:
the miracle of the child I had.
And I could learn that he needed me
to show him his remarkable strengths,
just as raising him
would help me see mine.
When we are in our darkest moments,
we must look for the light,
must ask ourselves,
“What comes after? How can
my life be transformed by this?
Why is this pain important?
What is it teaching me?”
This mindset shift transforms
our experience in a heartbeat.
That requires a degree of faith.
Now when I say faith,
I’m not talking about religion,
I’m talking about trusting
that our lives are meaningful.
I’m talking about trusting
that we are meant to become something
more than we are right now.
I’m talking about having faith
that our lives matter.
The faith in this hopefulness
gives us power, it gives us resilience.
It gives us an opportunity
to hold onto happiness
when all we want to do is cry.
It gives us the courage to stay, to fight,
when all we want to do is run.
It gives us the compassion to forgive
when we’re desperately clinging to blame.
It gives us the strength to survive.
And it’s not easy, believe me.
I’ve lived from the day I was born
knowing life is not fair,
knowing the people I love most are dying,
knowing light can be dangerous.
But we live in the light,
and sometimes finding it
means looking for it in the darkness.
(Applause)