A love letter to realism in a time of grief Mark Pollock and Simone George

Simone George: I met Mark
when he was just blind.

I had returned home to live in Dublin

after the odyssey that was my 20s,

educating my interest in human rights
and equality in university,

traveling the world,
like my nomad grandmother.

And during a two-year stint
working in Madrid,

dancing many nights
till morning in salsa clubs.

When I met Mark, he asked me
to teach him to dance.

And I did.

They were wonderful times,
long nights talking,

becoming friends
and eventually falling for each other.

Mark had lost his sight when he was 22,

and the man that I met eight years later
was rebuilding his identity,

the cornerstone of which
was this incredible spirit

that had taken him to the Gobi Desert,
where he ran six marathons in seven days.

And to marathons at the North Pole,
and from Everest Base Camp.

When I asked him what had led
to this high-octane life,

he quoted Nietzsche:

“He, who has a Why to live,
can bear with almost any How.”

He had come across the quote
in a really beautiful book

called “Man’s Search for Meaning,”
by Viktor Frankl,

a neurologist and psychiatrist

who survived years
in a Nazi concentration camp.

Frankl used this Nietzsche quote
to explain to us

that when we can no longer change
our circumstances,

we are challenged to change ourselves.

Mark Pollock: Eventually,
I did rebuild my identity,

and the Why for me
was about competing again,

because pursuing success
and risking failure

was simply how I felt normal.

And I finished the rebuild

on the 10th anniversary
of losing my sight.

I took part in a 43-day expedition race

in the coldest, most remote,
most challenging place on earth.

It was the first race to the South Pole

since Shackleton, Scott and Amundsen
set foot in Antarctica, 100 years before.

And putting the demons
of blindness behind me

with every step towards the pole,

it offered me a long-lasting
sense of contentment.

As it turned out,
I would need that in reserve,

because one year after my return,

in, arguably, the safest place on earth,

a bedroom at a friend’s house,

I fell from a third-story window
onto the concrete below.

I don’t know how it happened.

I think I must have got up
to go to the bathroom.

And because I’m blind,
I used to run my hand along the wall

to find my way.

That night, my hand found an open space
where the closed window should have been.

And I cartwheeled out.

My friends who found me
thought I was dead.

When I got to hospital,
the doctors thought I was going to die,

and when I realized
what was happening to me,

I thought that dying might have been …

might have been the best outcome.

And lying in intensive care,

facing the prospect
of being blind and paralyzed,

high on morphine, I was trying
to make sense of what was going on.

And one night, lying flat on my back,

I felt for my phone to write a blog,

trying to explain how I should respond.

It was called “Optimist, Realist
or Something Else?”

and it drew on the experiences
of Admiral Stockdale,

who was a POW in the Vietnam war.

He was incarcerated, tortured,
for over seven years.

His circumstances were bleak,
but he survived.

The ones who didn’t survive
were the optimists.

They said, “We’ll be out by Christmas,”

and Christmas would come
and Christmas would go,

and then it would be Christmas again,

and when they didn’t get out,
they became disappointed, demoralized

and many of them died in their cells.

Stockdale was a realist.

He was inspired by the stoic philosophers,

and he confronted the brutal
facts of his circumstances

while maintaining a faith
that he would prevail in the end.

And in that blog, I was trying to apply
his thinking as a realist

to my increasingly bleak circumstances.

During the many months
of heart infections and kidney infections

after my fall, at the very
edge of survival,

Simone and I faced
the fundamental question:

How do you resolve the tension
between acceptance and hope?

And it’s that that we want
to explore with you now.

SG: After I got the call,
I caught the first flight to England

and arrived into the brightly lit
intensive care ward,

where Mark was lying naked,
just under a sheet,

connected to machines
that were monitoring if he would live.

I said, “I’m here, Mark.”

And he cried tears he seemed
to have saved just for me.

I wanted to gather him in my arms,
but I couldn’t move him,

and so I kissed him
the way you kiss a newborn baby,

terrified of their fragility.

Later that afternoon, when the bad news
had been laid out for us –

fractured skull, bleeds on his brain,
a possible torn aorta

and a spine broken in two places,
no movement or feeling below his waist –

Mark said to me, “Come here.

You need to get yourself
as far away from this as possible.”

As I tried to process what he was saying,

I was thinking, “What the hell
is wrong with you?”

(Laughter)

“We can’t do this now.”

So I asked him,
“Are you breaking up with me?”

(Laughter)

And he said, “Look, you signed up
for the blindness, but not this.”

And I answered,
“We don’t even know what this is,

but what I do know
is what I can’t handle right now

is a breakup while someone I love
is in intensive care.”

(Laughter)

So I called on my negotiation skills
and suggested we make a deal.

I said, “I will stay with you
as long as you need me,

as long as your back needs me.

And when you no longer need me,
then we talk about our relationship.”

Like a contract with the possibility
to renew in six months.

(Laughter)

He agreed and I stayed.

In fact, I refused to go home
even to pack a bag, I slept by his bed,

when he could eat, I made all his food,

and we cried, one or other
or both of us together, every day.

I made all the complicated decisions
with the doctors,

I climbed right into that raging river
over rapids that was sweeping Mark along.

And at the first bend in that river,
Mark’s surgeon told us

what movement and feeling
he doesn’t get back in the first 12 weeks,

he’s unlikely to get back at all.

So, sitting by his bed,
I began to research why,

after this period they call spinal shock,

there’s no recovery, there’s no therapy,
there’s no cure, there’s no hope.

And the internet became this portal
to a magical other world.

I emailed scientists,

and they broke through paywalls

and sent me their medical journal
and science journal articles directly.

I read everything that “Superman” actor
Christopher Reeve had achieved,

after a fall from a horse

left him paralyzed from
the neck down and ventilated.

Christopher had broken this 12-week spell;

he had regained some movement and feeling
years after his accident.

He dreamed of a world
of empty wheelchairs.

And Christopher and the scientists
he worked with fueled us with hope.

MP: You see, spinal cord injury

strikes at the very heart
of what it means to be human.

And it had turned me from my upright,
standing, running form,

into a seated compromise of myself.

And it’s not just the lack
of feeling and movement.

Paralysis also interferes
with the body’s internal systems,

which are designed to keep us alive.

Multiple infections, nerve pain,
spasms, shortened life spans are common.

And these are the things that exhaust
even the most determined

of the 60 million people
around the world who are paralyzed.

Over 16 months in hospital,

Simone and I were presented
with the expert view

that hoping for a cure had proven
to be psychologically damaging.

It was like the formal medical system
was canceling hope

in favor of acceptance alone.

But canceling hope ran contrary
to everything that we believed in.

Yes, up to this point in history,

it had proven to be impossible
to find a cure for paralysis,

but history is filled with the kinds
of the impossible made possible

through human endeavor.

The kind of human endeavor
that took explorers to the South Pole

at the start of the last century.

And the kind of human endeavor

that will take adventurers to Mars
in the early part of this century.

So we started asking,

“Why can’t that same human endeavor
cure paralysis in our lifetime?”

SG: Well, we really believed that it can.

My research taught us

that we needed to remind
Mark’s damaged and dormant spinal cord

of its upright, standing, running form,

and we found San Francisco-based
engineers at Ekso Bionics,

who created this robotic exoskeleton
that would allow Mark to stand and walk

in the lab that we started
to build in Dublin.

Mark became the first person
to personally own an exo,

and since then, he and the robot
have walked over one million steps.

(Applause)

It was bit of an early celebration,
because actually it wasn’t enough,

the robot was doing all of the work,

so we needed to plug Mark in.

So we connected
the San Francisco engineers

with a true visionary in UCLA,
Dr. Reggie Edgerton,

the most beautiful man

and his team’s life work had resulted
in a scientific breakthrough.

Using electrical stimulation
of the spinal cord,

a number of subjects
have been able to stand,

and because of that,
regain some movement and feeling

and most importantly,

to regain some of the body’s
internal functions

that are designed to keep us alive
and to make that life a pleasure.

Electrical stimulation of the spinal cord,

we think, is the first meaningful
therapy ever for paralyzed people.

Now, of course,
the San Francisco engineers

and the scientists in UCLA

knew about each other,
knew about each other’s work.

But as so often happens

when we’re busy creating
groundbreaking scientific research,

they hadn’t quite yet got together.

That seemed to be our job now.

So we created our first collaboration,

and the moment when we combined

the electrical stimulation
of Mark’s spinal cord,

as he walked in his robotic exoskeleton,

was like that moment when Iron Man
plugs the mini arc reactor into his chest

and suddenly he and his suit
become something else altogether.

MP: Simone, my robot and I moved
into the lab at UCLA for three months.

And every day, Reggie and his team

put electrodes onto the skin
on my lower back,

pushed electricity into my spinal cord
to excite my nervous system,

as I walked in my exo.

And for the first time
since I was paralyzed,

I could feel my legs underneath me.

Not normally –

(Applause)

Thank you.

(Applause)

It wasn’t a normal feeling,
but with the stimulator turned on,

upright in my exo,
my legs felt substantial.

I could feel the meat of my muscles
on the bones of my legs,

and as I walked,
because of the stimulation,

I was able to voluntarily move
my paralyzed legs.

And as I did more,
the robot intelligently did less.

My heart rate got a normal
running, training zone

of 140 to 160 beats per minute,

and my muscles, which had
almost entirely disappeared,

started to come back.

And during some standard testing
throughout the process,

flat on my back,

twelve weeks, six months
and three whole years

after I fell out that window
and became paralyzed,

the scientists turned the stimulator on

and I pulled my knee to my chest.

(Video) Man: OK, start,
go, go, go, go, go.

Good, good, good.

SG: Yeah, yeah, go on, Mark,
go on, go, go, go, go, go, wow!

(Applause)

(Laughter)

SG: Well done!

(Applause)

MP: Do you know, this week,
I’ve been saying to Simone,

if we could forget about the paralysis,

you know, the last few years
have been incredibly exciting.

(Laughter)

Now, the problem is, we can’t quite
forget about the paralysis just yet.

And clearly, we’re not finished,

because when we left that pilot study
and went back to Dublin,

I rolled home in my wheelchair

and I’m still paralyzed
and I’m still blind

and we’re primarily focusing
on the paralysis at the moment,

but being at this conference,

we’re kind of interested if anyone
does have a cure for blindness,

we’ll take that as well.

(Laughter)

(Applause)

But if you remember
the blog that I mentioned,

it posed a question
of how we should respond,

optimist, realist or something else?

And I think we have come to understand
that the optimists rely on hope alone

and they risk being
disappointed and demoralized.

The realists, on the other hand,

they accept the brutal facts
and they keep hope alive, as well.

The realists have managed to resolve
the tension between acceptance and hope

by running them in parallel.

And that’s what Simone and I
have been trying to do

over the last number of years.

Look, I accept the wheelchair –

I mean, it’s almost impossible not to.

And we’re sad, sometimes,
for what we’ve lost.

I accept that I, and other wheelchair
users, can and do live fulfilling lives,

despite the nerve pain
and the spasms and the infections

and the shortened life spans.

And I accept that it is way more difficult

for people who are paralyzed
from the neck down.

For those who rely
on ventilators to breathe,

and for those who don’t have access
to adequate, free health care.

So, that is why we also hope
for another life.

A life where we have created a cure
through collaboration.

A cure that we are actively working
to release from university labs

around the world

and share with everyone who needs it.

SG: I met Mark when he was just blind.

He asked me to teach him
to dance, and I did.

One night, after dance classes,

I turned to say goodnight
to him at his front door,

and to his gorgeous guide dog, Larry.

I realized, that in switching
all the lights off in the apartment

before I left,

that I was leaving him in the dark.

I burst into uncontrollable tears
and tried to hide it, but he knew.

And he hugged me and said,

“Ah, poor Simone.

You’re back in 1998, when I went blind.

Don’t worry, it turns out OK in the end.”

Acceptance is knowing
that grief is a raging river.

And you have to get into it.

Because when you do,
it carries you to the next place.

It eventually takes you to open land,

somewhere where it will
turn out OK in the end.

And it truly has been a love story,

an expansive, abundant,
deeply satisfying kind of love

for our fellow humans and everyone
in this act of creation.

Science is love.

Everyone we’ve met in this field

just wants to get their work
from the bench and into people’s lives.

And it’s our job to help them to do that.

Because when we do,
we and everyone with us

in this act of creation

will be able to say,

“We did it.

And then we danced.”

(Video) (Music)

SG: Thank you.

(Applause)

MP: Thank you.

(Applause)

Thank you.

(Applause)