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