What grief taught me about resilience
[Applause]
the naughtiest didn’t go so well for me
the 90s were a blast the 2010s
bit dubious and then we all got 20 20.
it’s delivered us challenges
anxieties grace and losses we did not
anticipate
nor expect and before the pandemic hit
at the start of 2020
i was diagnosed with young onset
parkinson’s disease at the grand old age
of 46.
all the symptoms i’ve been having the
stiffness the rigidity
the tremors the shuffling
the difficulty swallowing and choking
the lost exterior in my hands
the expressionist face where i look sad
and mad all the time
my friends constantly thought it was
ticked off with them it was all signs of
parkinson’s disease
and well-intentioned people said to me
well you know nick at least it’s not
life-threatening
this was true it’s a chronic
degenerative condition
something i’ve grown quite used to
because back in those dodgy 2010s
i had been an avid adventure sporter
marathons rafting trips mountain biking
trips adventure races
ocean swims you name it if it had
adventure in front of it
i was in for penny and for a pound and i
was training for an iron distance event
and when i was training for the event it
wasn’t going as well as it normally
would
i was getting dropped off bike rides
struggling with running my swimming
wasn’t improving
but when you’re training and sporting
events like that you’re told it’s all in
your mind
push through the pain your body couldn’t
do anything i kept pushing
and i got to the start line and the
panic was
rising and saying it was different from
my normal previous jitters
i thought i’m not ready for this but
i’ve got in the water anyhow but i
bonked in the swim
two months later i was in the
cardiologist’s office you said to me
nick you’ve got hypertrophic
cardiomyopathy
your heart is failing it is stiffening
your function has dropped by 11
we need to start medicating to preserve
the function of your heart it is going
to get worse
your big sporting endeavors are over
that was life altering for me because
sport had been a big part of who i was
it was
part of my mental health my sunday how i
dealt with life
and the stresses but again
well-intentioned people said to me
you know nick at least it’s not
life-threatening this was true
and i knew something about
life-threatening because back to the
naughties
2005 to be precise i was diagnosed with
aggressive stage 3 her2-positive breast
cancer bit of a mouthful
a double mastectomy ensued overectomy
chemotherapy
radiotherapy immunotherapy hormone
therapy all thrown at me
and the thing is with breast cancer as
well your inhibitions go out the window
really quickly
because you have to flash your girls at
all and sundry
now i had exceptionally small girls i
have to say and every surgeon i met
could not
help themselves but past comment on how
small they were
one surgeon said to me you know like if
i take the one offending above
my smallest implant is going to leave
you lopsided i thought well fair enough
then
you can give me a bigger set back then
please silver linings and all of that
but all joking aside though i knew
council was a tough
a tough road because the store 2005 had
already come calling into my life
my beautiful blond-haired blue-eyed girl
kenzie at the start of 2005.
mckenzie was a feisty vivacious little
girl no did not enter her vocabulary
and she could throw a patty better than
the best of them but when she started to
fall over and scream in acute pain
i knew this was different and as a
parent we are often told if you notice a
difference in your child’s behavior
take them to the doctor i did numerous
times
numerous times i was dismissed it’s a
behavioral issue
it’s a toilet training issue go home but
the pain attacks were getting worse and
more intensive
so i rocked up to the national
children’s hospital here in new zealand
in march they noticed something was
wrong so they kept us in
an over three week period numerous
invasive tests were done on kensington
she was traumatized after three weeks
but after that period of time she’d
gotten worse to the point she was
completely paralyzed in a morphine pump
and they were going
it must be a weird and wonderful virus
has to be
but a doctor i used to work with come in
one saturday morning went like there’s
something going on here
i’ll order the full body mri when he
ordered the mri the full body it turned
out kenzie had a tumor on the top for
spine
all her symptoms were typical of spinal
cord compression
but they missed it because they were
looking at the fact she was two and a
half
and anger fear anxiety
rose up inside of me but i had to quell
that because my puppet
needed me more than anything she needed
her mother to rub her loving arms around
her
and carry her through this journey and
rebuild her life
and whenever you walk into a pediatric
oncology ward
while it’s poignant sad but it’s also
all inspiring
because these young children and young
adults
while they can be so unwell and can be
so sad in the moment
whenever they’re feeling well they’re
squeezing every moment
out of life they’re living in the moment
they’re experiencing it they just want
to be surrounded by love
and fun and enjoyment whenever they’re
well enough to experience it
and through the next few months kenzie
bounced back the little
traumatized girl she
disappeared she she blossomed again into
the little vicious
tenacious little little ink that i knew
and she started to walk again with a
little walker
and that’s how we got to november we
actually went to rainbow’s end
and um there have been an image out of
kenzie at rainbow’s end coming up
shortly
she loved the roller coaster rides
especially the gold rush she squealed
with delight
she loved the log flume more to the fact
that her brother got completely soaked
and she didn’t
we were having an absolute blast and i
thought you know
gosh 2006 is going to be a good year you
know kenzie’s doing really well
my treatment’s going good it’s going to
be brilliant
cancer had other plans for us
as you know when you’re going through
cancer treatment your immune system
becomes suppressed
and you’re at risk of infections and
cancer caught infections numerous times
throughout her treatment
from the last week of december it was
different she caught an infection that
she did so many times before
but this time it developed into
septicemia
that whole week that last summer i hoped
that kenzi’s body would be able to
to get through this but her little hands
and feet went black
we knew she was going to lose them we
got to the 29th of december
and the doctor said to us kenzie’s
letting us know it’s her time
and i said turn the machines off and
bring her to me i brought her into this
world and i will be carrying her to her
life’s end
so kenzie’s last show of strength and
courage
was to let go of a body that could no
longer do what she needed it to do
and she died just after 12 o’clock on
friday the 29th of december
grief brought me to my knees
i cannot put into words or articulate
how i felt
it was like i wasn’t tethered from my
rock i was flailing all over the place
it’s like
what’s happened this is not the way that
life is supposed to be
it was overwhelming of sadness of trauma
but in that moment i looked at my son
who was five
and i knew how i responded to grief
would ultimately affect his childhood
and the man that he would become
so i knew i needed to rebuild my life
from the shattered ambers it was in
i knew i needed to move forward not move
on but move forward with my grief
i knew the things i could do within
myself was to turn the things that
brought me joy
and pleasure my sport being at nature i
would go to the beach
and it would calm the storm that was in
my heart and my mind
my friends and family surrounded me some
friends ghosted us
let them go if they cannot be there in
your darkest door when you need someone
to stand with you shoulder to shoulder
they’re not worth it because other
angels will come into your life
and will walk through that journey with
you and they did
but this was too big for friends and
family alone
i knew i needed a therapist because this
was so
such a magnitude of loss including me
having my own cancer
and i didn’t want my grief to come
unresolved and complicated and developed
mental health issues later on
so i got a therapist and she said me she
had a little foundation of her own
so she seen me at no charge now i
couldn’t have afforded it
she was a godsend to me because i would
not be here today
if it was not from maxine bergen-page
because she helped me start to rebuild
my life
i went back to university to study
i got involved in the herceptin campaign
here in new zealand advocated for better
access to medicines for women
i met amazing women and advocates on
that journey who are still advocating
today
i was unable to enjoy the simple
pleasures of life of raising conor
having played dates going to his rug by
having his parties
all those normal things that we take for
granted that could bring such joy
but at night my it was so difficult
because my heart was so broken
and sometimes the tears were just not
would not stop falling
and that’s what i’m calling my good
friend billy conley i would turn on my
dvd with billy conley and i would
laugh and laugh and laugh and he was my
savior
i kid you not because you cannot laugh
and cry at the same time
and i did not think i’d be sharing the
same things with billy conley today
such as cancer and parkinson’s disease
or some things i’d rather not share with
my idol
but hey but dr luiz tonkin talks about
grief
and she explains like this when grief
happens to you
it is all-encompassing you’re right in
it the trauma
you just every waking moment every day
every hour every second
you’re trying to figure your life out
but it never shrinks
what it does is i sit here your life
grows around your
grief and that’s what it has for me and
sometimes
other things happen that throw you right
back into your grief sometimes it’s
hurtful things that people say
somebody had said to me once when i was
out so how come you survived mckenzie
didn’t
and i said well kenzie got a lemon she
got a body that wouldn’t work you mean
that’s that’s it
she said no she gave up the fight you
chose to be here
anger right back into the grief and
things like well
a higher being loved her more she’s in a
better place now there’s a grand purpose
none of these things help
well-intentioned maybe but they’re
hurtful
don’t say them what my journey with
grief taught me
and having max seen there was that it
taught me about resilience
it taught me that there’s things i can
do but i can’t do it on my own and need
that community
i need professional to get me through
this really tough stuff
and also to be open to the journey and
to have joy in your life again because
you’re allowed to be happy
but you’ve got to be open to it and
every year after kenzie died
to feel the rush of being alive i used
to do big challenges
and this is me on the first year after
kenzie died rafting the grade 5 where i
roll river
yes that’s me absolutely wetting my
pants going high and god’s creation am i
ever going to get through this
and how is resilience like rafting well
i’ll tell you what it’s like
whenever you’re going to rock the grade
5 river you know you can’t control those
rapids
you have not got to hope and heck but
you’ve got to accept what what’s coming
it’s the debt you’ve been dealt and
you’ve chose to get on that boat
you know that you’re fit i’m a good team
player and i’ve got my
team members around some of my other
rafters but we’re all novices
we are not going to be able to rough
that river and get through it safely
without having the expert to get us
through because when it all goes belly
up and it will go belly up
you’re going to need them to pull you
through and that’s what resilience is
like
and we were also open to enjoying the
experience as well it was the thrill of
the ride
and not closing your mind in your heart
to experiencing it
and through all of that journey i was so
grateful to max then maxine’s no longer
with us
maxine gave me an amazing gift and that
was to be able to move forward with my
grief and build my life around it again
where i could function well in life and
also provide a good future for my son
i wanted to give that back to other
families because
whenever you’re facing serious illness
or bereavement or grief
you can fix the body all your like with
the person that says completely broken
you need help you need help to resolve
it to process it
to move forward so you don’t have
complicated grief and end up with mental
health issues later on
so i went and set up kenzie’s gift a
charity to support
the mental health of young people and
their families facing the same thing we
did
and over the years since we have been
established we’ve supported
hundreds of young people and families
delivered thousands of therapy sessions
delivered grief and resource packs
throughout the country
and through the whole journey i’ve had
the privilege privilege of meeting some
amazing
amazing young kiwis and one of them has
been
becca hansell becca’s now 14 years old
we first met becca when she was seven
when her mom
emma was facing terminal leukemia
becca says her early memories of her
childhood were populated with visits to
the hospital
having to be quiet at home when her mum
needed at rest not being able to bring
little friends around for playdates
because
you know the risk of infection to emma
she felt different from her peers at
school because she felt lonely
and whenever emma knew the impact of
terminal illnesses have on on becca
so she turned to us at kenzie’s gift and
we supported them both through that
journey
and continued to see becca afterwards
and as becca said she doesn’t know what
words were said
or what strategies were used she knew
she was a fairly sad and unhappy child
but with the support that she’s had
she’s been able to process and learn to
live with her grief
and be an amazing young woman and as i
said she’s now a national rock climbing
champion
she wants to be an engineer she’s giving
back to kenzie’s gift by organizing a
big fundraiser coming up
she’s an amazing young woman who will be
a player in this world and has a bright
future ahead of her
and will carry her mom’s legacy with her
another young person i’ve had the
wonderful pleasure of meeting his young
local wolfgang
this is luca and his brother costa
costa died a few years ago now from
childhood cancer
and we supported look at that time and
he said he needed the support to help
him make the small steps to help him
make sense of his grief
and for looking for him he said to us
when grief is shared it feels less
lonely
and when kosta’s name is mentioned it
makes him so happy
and often we’re guilty of that because
whenever grief happens
we often don’t talk about it we don’t
want to show we don’t mention
the person that’s died their name again
when all people want to hear they’ve
been
alive it brings them joy and happiness
and luke has been a great advocate for
other young people
he’s made two award-winning movies
called our superheroes
and dear grief which was part of a
kenzie’s gift campaign
to share what it’s like living with
grief so other young people do not feel
so alone
and as becca said she felt alone but be
giving a voice to grief
it’s opening up the conversation so
young people do not fail
they’re alone in their grief and when
grief is shared
as lucas says you feel less lonely for
me in the 15 years since kenzie’s died
i’ve been able to watch my son grow up
whenever i was first diagnosed i all i
wanted to baby was the life till he
turned 18.
he’s now 20. he’s got his future ahead
of him
he makes me proud every day i just hope
that life
deals him a better hand than it dealt me
for me
even though i have got a malfunctioning
body that continues to play up
i live the best life i can and squeeze
every ounce of life out of it
because that’s how i can best honor
kenzie and the greatest gift
that grief has given me has been the
strength of resilience
thank you so much
you