December 22, 2024 • 40 mins
Today on the podcast, I got to chat with the fabulous Lisa Cox who is a highly regarded disability advocate, TedX speaker, writer and author.
Lisa’s story is very complex and began with a brain hemorrhage as she was about to board a plane in Melbourne. She discusses her journey with me in an open and honest way…the good and the bad!
We discuss how medical teams can incorporate family members in to the care of people in hospitals. Management of pressure injuries and simply how to show kindness to our brothers and sisters with a disability.
Lisa is passionate about employment opportunities for people with disabilities, changing outdated stigmas and encouraging inclusivity.
As this is my last podcast of the year, I want to take this opportunity to thank you all for listening and supporting Tenderness for Nurses.
We have such an exciting year ahead and I can’t wait to share it with you all!!
Bek x
Support the show: https://www.patreon.com/tendernessnurses
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Apoge Production.
Speaker 2 (00:11):
Hi, my name's beck Woodbine and welcome to Tenderness for Nurses.
I'm grateful for the person that I have the opportunity
to be.
Speaker 1 (00:19):
So I hit it and parked it for Nelly four years.
We always have free will, We always get to choose.
We are autonomous.
Speaker 2 (00:28):
Hi everyone, thank you for tuning back into ten and
Ess for Nurses. Well, it's the last episode of twenty
twenty four and we have the amazing Lisa Cox joining
us today to have a chat and I'm very excited
to share her story with you all, which is quite remarkable.
But before we get underway, I just want to say
(00:50):
a really huge, heartfelt thank you to everyone for your support.
The podcast is just tripled in size and I can't
even comprehend it because in season one I just was
hoping that one person would listen to it, and here
we are now with thousands all over the world listening
to the podcast, your support, sharing the podcast with friends
(01:13):
and colleagues and listening. I cannot tell you how much
that means to me. The idea of the podcast initially
was just to help people show tenderness to themselves and
to each other, and through the knowledge and vulnerability of
the stories that have been shared by my guests. The
(01:33):
feedback has been that people are showing kindness to themselves
and to each other, and you're learning to just give
yourself a little bit of space and be gentle with yourself.
And for that, I humbly and gratefully say thank you
to all my guests who have given up their time
to come and chat and share their information and knowledge
(01:54):
with you all. So please have a safe and wonderful Christmas.
Don't forget to share, review like or don't like. It's
each their own. But the idea of this podcast is
to be kind to each other and ourselves, and I'm
(02:15):
excited to let you know there's some pretty big things
happening next year, so stay tuned. So now over to Lisa.
Thank you so much for coming in.
Speaker 1 (02:25):
Thank you very much for having me. It really is
great to be here.
Speaker 2 (02:29):
We actually ran into we live in the same precinct,
and I ran into Lisa quite probably eighteen months ago,
quite early in the morning, and you were coming back
from training, and we had a bit of a chat
and talked about the dogs or whatever, and then a
mutual friend of ours, Carney, mentioned your name and showed
(02:53):
me a photo. I was like, hang on, I know
that person. She lives where I live. And then of
course we ran into each other and I had to
hit you up to come and speak on the podcast
because you are amazing advocate for disabilities. So do you
want to tell us a little bit about your journey?
Speaker 1 (03:11):
Yeah? Sure, And it has been been a journey for
whatever a better word. And I suppose it all started
twenty years ago when I was at Melbourne Port my morning,
flying home to see my family doing what a lot
of people at the age of twenty four do, climbing
corporate ladder and I'd been to UNI loving life and
(03:32):
I had a brain hemorrhage at Melbourne Airport, at the airport.
At the airport, I don't remember that time, but all
the accounts told my family apparently I was stuttering my words,
they wouldn't let me onto the plane and then I collapsed.
So I never made that flight, but spent the next
(03:52):
three weeks in a coma, two months on life support,
and over a year in hospital after that. So that
first year in hospital was fun stuff and it was
it was It was really really tough understand way, but
I was a space cadet for the first few months,
because I was on so much medication, my hands and
(04:13):
hands and feet were quite literally rotting off, all turning gangerous.
So my left leg, all of my right toes a
night of my fingertips were appitated in the end from
the medication. So the medication they put me on was
brilliant because it saved my life. But it's a side
effect that it took all the blood from my peripheries
(04:33):
back to my vital organs, and so my nose turned
back for a while. But I got to keep that,
which is great. But as a result, I've got osteoarthritis
everywhere all my joints. Is a normal thing as well
that it can cause joint issues. I've had one hip replacement,
so a stroking heat replacement, all the things that happened
(04:55):
to old ladies. It was hard to four and obviously
my permanent brain injury now from the stroke, my speech
has been affected. I'm over twenty five percent blind and
have things like epilepsy, kind of pain, chronic fatigue and
all those sorts of thanks of the usual side effects
of a brain injury.
Speaker 2 (05:15):
Was the brain injury? Did they or could they explain
why it happened so spontaneously, and why are someone so young?
Speaker 1 (05:24):
So I was a fit, healthy twenty four year old,
going to the gym a few times a week, eating
all my vegetables, that sort of stuff. Yeah, didn't have
any of the usual I suppose lifestyle factors that were
meaning someone's more likely to have a stroke. But they
did a lot of tests until my family that it
was a streptogogust a virus. And one of the specialists
(05:45):
said to quote him, bloody bad luck. So we still
don't notice this day where I picked that up. Could
have been the supermarket, It could have been anywhere.
Speaker 2 (05:53):
It can be anywhere.
Speaker 1 (05:55):
Yeah, so that's what caused the brain hemorrhage, and yeah.
Speaker 2 (05:59):
And the rest is history. Exactly how did you find
that time in the hospital? I mean, I can only
imagine you were really once you got your bearings that
you're really angry and upset and worried about the future.
How did you cope with that? How did your family
(06:20):
cope with that?
Speaker 1 (06:23):
My family blessed them that for the first couple of months.
I can't remember any of it before or after the
brain hemorrhage, and I was completely untworry what was going
on around. They remembered every minute. Unfortunately they got to
call because I was in Melbourne, they were in Brisbane.
They got to call that night to say this has happened.
Come to Melbourne. We don't think at least it will
(06:44):
be alive. In the morning they arrived, obviously it was
the head of the largest intensive KENE in the Southern Hemisphere,
said she's my father, sixth person here. You may have
to turn off her life support if things don't improve.
So for two months they sort of rock up to
the hospital every morning, not sure if I'd be dead
or alive. And to this day I feel terrible for them,
(07:07):
even though some of my fault, I still feel like
it is and I was just off with the fairies
in any comera and yeah, yeah, so they have been
my biggest support through all of this, absolutely wonderful. And
when I came under the coma, I was many backed
to Brisbane and then spent the remaining months in hospital
(07:29):
and then depending on what surgery I needed, what had
to be cut off for something that'd taken me to
a hospital for a few weeks or another hospital, but
they drip fed me information In terms of day one,
they didn't say, here's what happened. Yeah, but slowly, bit surely,
I'm like, oh, so that happened, and that happened. And
then in the very very beginning, because I've been lying
(07:52):
flat for two months, I didn't have any course stability.
It's still pretty weak today. But I couldn't sit up
and have a look around and see what was happening.
I just knew that every day that the nurses would
be doing something to one of my feet, and only
found out months later that it's because my feet had
(08:15):
turned gangerous of one of them in particular, and it
was going to have to be amputated. So they did
tell me that month before, and I cried my eyes.
That was really upset, but woke up the next morning
was like I'm completely gotten what And so they started
not to tell me day after day of today it
would be like ground hole day. Basically is that a
(08:36):
blessing or is it a curse? I was kind of
glad that they didn't because I just wasn't. I wasn't
remembering anything, and when they did tell me, I did remember,
And the next morning I woke up and swollen eyes
and still remembered I specifically remember our nurse walking into
the room just dumping a bit of brushes on my
(08:56):
bed about prostatic limbs. I'm like, oh it, I was
mentally not prepared, so there was that was a bit
of a shock. And then that.
Speaker 2 (09:08):
Wasn't particularly kind to do it that way.
Speaker 1 (09:11):
Yeah, it wasn't. It wasn't, but I suppose they they
didn't know. They didn't know that, and they certainly meant
no malice, and then I were incredible. But and this
is not a reflection of the healthcare system or anything,
because it's brilliant. But I've spoken and written before about
(09:35):
how my perceptions of what disability would look like had
in part been shaped by the staff who would walk
into my room go you're going to be disabled for
the rest of your life, like it was a death sentence.
And I was already upset because I later realized that
was because I had only twenty four years worth of
(09:56):
media stereotypes in my head. But on top of that,
had everyone around me talking like, we're all about to
go to a funeral because I was going to be disabled.
But that's not to say it should have been let's
celebrate sunshine and raises at all. But it's a how do.
Speaker 2 (10:13):
You find the medium, like I suppose, how do you
find the sweet spot in that conversation.
Speaker 1 (10:21):
Yeah, it's it's really really hard, and I certainly can't
can't speak for everyone, but that was just one thing
I noticed that everyone around and was like, Oh, you
got to be disabled. That's that's terrible. It's the worst
thing that can possibly happen. And I don't want to
minimize how horrible it was and and everything like that,
(10:42):
but it's certainly, yeah, helped, It's certainly shaped a lot
of shape my mood, and.
Speaker 2 (10:49):
I think it shaped your recovery when you had that
mindset and people, you know, stuff that was saying you're
now handicapped initially. Do you think it changed how you
recover it or perceived yourself.
Speaker 1 (11:07):
That's a really good point. And I'm going to refer
to some work coming at the moment with some students
around rehabilitation and doing some consumer advisory work, and they're
all physios and then talking about key outcomes and the
metrics of that as are when the patient can walk again.
(11:27):
And I sort of fly to them in one of
the meetings that while so many people want to walk,
you can't. It's not either possible for everyone or not
realistic for everyone, and just by having that as the
only outcome. I originally thought coming out of hospital that
I have to walk again because that's the only way
(11:50):
to recover. And now twenty years on, I've been a
full time wheelchair years that for years and years and years,
and travel the world and go to the gym. It
certainly gives me more freedom and independence than.
Speaker 2 (12:02):
Was lying in the bed.
Speaker 1 (12:05):
Yeah, then lying in the bed, and then was explained
to me by staff.
Speaker 2 (12:11):
So I just want to explain to you guys, Lisa
is absolutely stunning woman, very eloquent. Even though the brain
hemorrhage has impacted a little bit of her language, you
can tell highly educated, thoughtful in her choice of words,
(12:32):
dresses beautifully you know. Yes, there have been some imputations
to fingers and to your feet, toes and nine fingertips,
but she's super, super independent, which I think is pretty
(12:53):
remarkable considering where you've come from.
Speaker 1 (12:57):
Thank you.
Speaker 2 (12:58):
You could have made a choice. I suppose to not
be where you are now as well.
Speaker 1 (13:05):
Yeah, it would be very easy for me to not
decide to do a lot of things I do, but
I do them because I'm so grateful to be able
to even though I don't drive a walk that doesn't matter.
I can't do those things, but I still can do
a hell of a lot of stuff, So I have
(13:26):
a lot of gratitude for that. If my brain hemorrhage
had been an inch up, down, left or right, we
wouldn't be having this conversation today. I wouldn't have written
books on his head, talk me doing my PhD, all
those sorts of things. This wouldn't be happening.
Speaker 2 (13:39):
Okay, so tell us about your PhD.
Speaker 1 (13:42):
There's not a lot to say at the moment. At
the moment, I'm really excited about it. But talk to
me in a couple of years and there might be
another story. But it's what I've been on my soapbooks
about for many, many years, which is the representation of
people with disability impacts our employment upcomes. So on a
(14:04):
really big scale, it would be how disability in all
forms of popular culture influences social arte comes like healthcare, employment, education.
But to make that really specific and narrow it down,
like you have to do for a PhD, it's just
advertising and employment. Okay, So what was your background before
you were My background wasn't advertising. So I was a
(14:25):
copywriter and so all the as you see on TV,
I'd write the scripts for those the print ads, I'd
the headline, all the words.
Speaker 2 (14:34):
You now go into hospitals and talk about disabilities and
management of disabilities to I'm assuming nurses as well as physios.
What are the key points you like to talk about.
Speaker 1 (14:49):
I do a lot of work with the Queensland Collaborative
around press injury prevention because I had three press injuries,
including a Stage four in my sacram and often I'll
speak at educational seminars or sometimes medical con differenstans were
I'm the only person in that room without a medical
(15:09):
degree or any any qualifications, but I have lived years
of experience, so you need both. On one's not superior
to or another, you absolutely need both. So a few
of the key takeaways from that is to understand the
importance of family, friends, caress, whoever it is in support,
(15:33):
the support crew or the I'm not sure what you
call them.
Speaker 2 (15:37):
All the support people to come up and like are
with you.
Speaker 1 (15:40):
Yes, yeah, but as part of the care team that's
thrown something to say. So an example of that my dad.
I was very fortunate. My parents have retired, so who
was at me with me every day at the hospital
and was very hands on in terms of if I
had to lift my leg or with my arm, things
that I couldn't do for myself in those first early months.
(16:01):
But unfortunately, because he wasn't a doctor of surgeon, he
was often overlooked in terms of how much he could
offer and how much he could help because the nurses
were run off their feet. They did an amazing job
and they were they were so so busy. But if
only they'd said to him, try a B and C
(16:22):
and the pressure injuries, it will it will help a lot,
but or could have been avoided potentially. Yeah, So those
first two months on life support, one of my pressure
injuries on the back of my head as well. Yeah,
on the on the back of my head to have
a bull spot which is so much on my head
dresser remastering around the time, on my take and on
(16:45):
my heel, on my remaining foot.
Speaker 2 (16:48):
When I went through and did my nursing training at PA,
that was drilled into us. You know, every few hours
we would turn our a couple of hours actually, we
would turn our patients from one side to the other
side back. When I and I did a lot of
night duties. I would, you know, do a sponge bath,
we'd check their back, that sort of thing. I mean,
(17:09):
that was just nursing one oh one faus and before
I set up my own clinic and I was still
doing palliative care, I used to do night judy. It
was when a hospital, but that now has been shut down,
and I used to wear with this an amazing nurse
called Mary, and Mary and I would just get together.
We'd have our trolley, we'd get our water, you know,
(17:32):
and we would do turns and washers on everybody. And
there were tool us that used to run I think
it was a twenty two bed ward and the tools
would just go through and do everybody, just make sure
everyone was done. But recently, well not recently, probably just
before COVID, I was in hospital in a private hospital,
(17:55):
and that didn't even I didn't even get a post
top sponge. I don't even know if that stuff even
happens anymore in hospitals because I haven't worked in a hospital.
But for me, it was so important to make sure
and maybe it was the hospital training or how I
was trained, but it was so imperative to keep moving
that patient so that you didn't get a bed saw
(18:16):
there still happened, and if they happened, you then manage them.
But I don't know, do you find that that happens
when you're in hospital now? They don't do that well.
Speaker 1 (18:27):
I suppose one of the other things I talk about.
I show photos of my hands on my feet quite
literally rotting off and I couldn't feel a thing. I
didn't know that my feet were gangrass and black and
weeding because I was on so many painkillers. But that
stage for my sacram how killed. I don't know if
it worked its way through the painkillers. And my point
(18:50):
when I present on this is that you may have
a patient with really complex trauma and bit's falling off everywhere.
That doesn't mean that a tiny little pressure injury somewhere
on their sacrumd body anyway can't be the most intense
pain that they're feeling. So pressure injuries are really really deceiving.
Just because they're not big and bleeding everywhere and discussing
(19:14):
doesn't mean that they're not the most intense pain.
Speaker 2 (19:17):
I've fetured my sacred at the end of last year,
and I have to tell you it was the most
painful thing that has And I've had surgery and whatever,
the most painful thing I've ever done, like ever had happened.
I cannot tell you the pain and all the nerves
that come out of that area, and you know that
(19:39):
go to your bladder and your bow and your legs,
and so in my mind, I can absolutely understand that
that must have been unbelievably painful for you.
Speaker 1 (19:51):
So agonizing, and that's you bring up a point that
all the nerves gong for. There's the assumption that pressure
injuries disappear, and by that I mean it's not as
red as it was, but there are still surfaces I
can't sit on because it's so painful, and still still
twining is on things in the gym at certain angles
(20:14):
if I you know that, on that sacrament all that
really hurts, and why not do that? So there's this
assumption from staff that oh, just goes away, you'll get
over it, it will heal, But those nerves don't. Now the
skin might.
Speaker 2 (20:28):
Yeah, I can hand on heart to you. I still
have issues and mind was a fracture and I didn't
break the skin, so I can't even comprehend if it
was deep. You know what grade for yes in that area,
which is a that's nasty.
Speaker 1 (20:44):
Yeah, there was bone unfortunately.
Speaker 2 (20:46):
So you know it just actually gives me goosebumps.
Speaker 1 (20:50):
Yeah. So every morning I'd get transferred by some lovely
waters and put onto a shower trolley. Yeah, and I
joke about it hosed down like a race horse. But
and that absolutely just killed just just lying on that surface.
But we soon worked out that putting it a gel
cushion under one hip, yeah, that's all took. But that
(21:12):
was an even even lying on the bed. Dad and I,
my eighty year old father, worked out that if we
scroll up a Queensland Health towel and shove that under
one hip, then yeah.
Speaker 2 (21:26):
So takes the pressure of it.
Speaker 1 (21:27):
Bit of trial and error on our part.
Speaker 2 (21:29):
I love it. I love this. Your dad was so innovative.
So and what was the impact on your parents?
Speaker 1 (21:38):
Oh God, I can't speak for them, and I can
only imagine that they were initially devastated because parents shouldn't
have to bury their children and to have none of
the It's not like they were expecting something to happen
because I was the fit and healthy one like all
of my brothers and sisters. And it really just just
(21:59):
came out of the blue. But I can only guess
that that were just absolutely devastated.
Speaker 2 (22:05):
Moved back up here to Queensland. Were you able to
get a great network of people to stay with you
to help you, or did your parents take all that
on themselves.
Speaker 1 (22:15):
My parents took that on. Initially I moved back home
with mom and dad, which is just what every twenty
five year old wants to go. Yep. But they lived
in this two story brick house, so I didn't get
upstairs for the first while, but just stayed down in
one of the spare rooms and couldn't wait to get out,
But at the same time was really grateful to be
there because it was a roof of my head and
(22:37):
someone to help me get back to it. But I
had to relearn on the basics. Initially in hospital, I
was just learning to sit up again and speak and
brush my own teeth. But then moving home was doing
the basics like making a cup of coffee or a
tea or something like that, until eventually I can move
out and move out on my own, not too far
(22:59):
from them, so they could still come visit and drive
me to appointments, which they doing a lot of in
the early that.
Speaker 2 (23:06):
Was that important for you to get your independence.
Speaker 1 (23:09):
Yes, it was very very They used to call me
Miss Independent in the hospital because the nurses were beautiful
and we're just you know, i'll help you, I'll do
that for you, and like, no, I'm going to do
it myself. And I'd failed miserably half the time, but
I still wanted to give it a red hotel. I
put a red hot crack because I knew that to
(23:29):
move out on my own, or to even just be
home all myself, I wouldn't have or I didn't want
to have a bunch of support around me twenty four seven.
So getting that independence back, and it was it was
kind of funny because I'd been this fierce, ficy little
woman beforehand, and I'm like, yeah, I can take on
the wall. I can do it. Can someone please tell
my shoelaces?
Speaker 2 (23:49):
Like I.
Speaker 1 (23:51):
Was so incapable of doing everything, But yeah, I still
wanted to give everything. I could have read helt cracks.
So there were things that the nurses like, you can't
do that, it's not safe. Getting myself onto the shower
chair in the mornings, and just getting the bathroom, like no,
I'm going to I'm going to do that and round.
I'm not recommending that people go against you.
Speaker 2 (24:11):
Would have been the nurse's worst nightmare. I was.
Speaker 1 (24:14):
I was, and some of them have have told me
that over a laugh.
Speaker 2 (24:19):
I love it. I'm so impressed with your positivity. Was
that a trait of you prior? Mum would say I
was that determined?
Speaker 1 (24:31):
Determined a little just running around and always saying why
so the doctors. I know the doctors as well, instead
of just saying this has happened, and this is why.
I'm like why. I wanted to know that the background
as to why everything was happening. Even though I didn't
didn't have that medical background, I still wanted to know why.
Speaker 2 (24:52):
But you have a right to understand that well, ask
those questions, and there was there was no I didn't
have an iPhone back then or a smartphone.
Speaker 1 (24:59):
And I'm kind of fortunate for that way because these
days I'm told something and straightaway I'm on Google, so
you know, put meant as well not just Google search.
Speaker 2 (25:08):
Yeah. Put. Men's amazing. That's a good one.
Speaker 1 (25:11):
It's it's good. But I probably read things I shouldn't
be reading. And my doctors used to talking off the
ledge in terms of moving in his office going I
think I've got X, Y and Z, and it's like, really,
let's talk about that.
Speaker 2 (25:23):
So you moved out on your own. I'm assuming you
had some amazing support obviously from family and friends. You
would have then also needed to have ots helping you out,
physio social workers do they really no social work and psychologists?
(25:44):
Did you? And you had that team around you? Do
you still have a team around you like that?
Speaker 1 (25:50):
I do. It's a it's a different team and changes
year to year. But I was going in for weekly
physio as an outpatient. After that first year, when I
was technically discharged, I'd go back into physio and then
not really any ot. So I was I was a
professional writer and losing all the tools of my trade,
(26:11):
my fingertips, my eyesight, and my part of my brain function.
That to me was more devastating than losing the ability
to walk. And so I bought myself the cheapest laptop
I could when I got back to mum Dad's place
and just sat at the kitchen table and taught myself
how to type Wow with three fingers.
Speaker 2 (26:31):
That's so cool.
Speaker 1 (26:33):
So now I write still, But that that was one
one thing that I really wanted to get back because
there's really great text voice to text soft whatever. Because
my voice is a bit funny. Sometimes it doesn't always
work the best.
Speaker 2 (26:49):
But I'd be amazing for you now, yes, yes or no.
Speaker 1 (26:53):
Yeah, it's getting getting my head around all the all
the new tech, but just being able to put my
hands on keyboard and write that was that must be
really want to happen place. Yeah, it's I hope lace
writing with you.
Speaker 2 (27:08):
And I don't want to sit here and just you know,
talk about the past and bring all that sort of
stuff up, because I'm sure you know everyone does that.
What I'd love to talk to you about is the
changes you want to see around people with disabilities and
what's happened with NDIS and the funding that's come been
(27:29):
taken away from that, and you know, getting onto an
airplane and how they can make that easier for you.
You know, what are some of the things that need
to change to make life simpler for someone that might
be in a wheelchair.
Speaker 1 (27:47):
Okay, so much needs to change, But at the same time,
I don't want everyone out there to think, oh, it's
too overwhelming, I'll do nothing, because sometimes the changes that
need to have made are so so simple, whether it's
just addressing somebody differently, because that's the other misconception that
where and everybody with the disability is the same. But
(28:09):
you can have two people with the same diagnosis who
are completely different. So I've often had a lot of
people say, oh, brain injury, strokes. Yes, my ninety year
old grandfather had a stroke. I know all about it.
I'm like different, twenty four year old woman. Not the
same thing.
Speaker 2 (28:25):
It's like MS. You know, a male has MS very
differently to a female, and two female with MS definitely different.
You know, it's horses. We're all different.
Speaker 1 (28:34):
Yep, exactly. And even I knew one person who was
a partial paraplegic and she thought everybody with everybody in
a wheelchair had bal bladder problems. No, that's not all
of us. But you know, some people's smilele injuries may
but you have to note that they're all all completely different.
(28:55):
So I do a lot of a lot of traveling
to work and with my husband, and getting onto an
aeroplane isn't too bad for me. But I know there
has been some really great workdown over in the UK lately.
Am not getting wheelchairs onto planes. But the thing for
me is that I actually want to get out of
this because it's it's great to get me from A
(29:16):
to B for half an hour or something, but to
sit in this for eight hours, I couldn't think of
it having worse.
Speaker 2 (29:23):
No.
Speaker 1 (29:24):
Yeah, and I have a pressure pressure injury cushion all
the time, but.
Speaker 2 (29:30):
Even sitting on that for eight hours, oh yeah, it's
still not going to help prevent an injury eight hours
down the track. You know, if your skin's compromised, you know,
So I can understand then. And also, I mean imagine
sitting in a wheelchair if you've got an eight hour
flight or a fourteen hour flight, yeah'd be horrendous.
Speaker 1 (29:51):
I know some people who may be a quadriplegic soul
or something like that. I actually want to stay in
the wheelchairs. But again, everybody is different, so you can't
just assume that old wheelchair users want to stay in
their chair or want to get out, understanding that we're
not all not a monolith and we're all very different.
Speaker 2 (30:09):
So the terms disability is it the correct term? So
for me to have introduced you someone that is a
disability advocate, is that correct? Am? I? Am? I addressing
you in an appropriate manner.
Speaker 1 (30:25):
For me, that's absolutely fine. And disability, generally speaking, disability
is something that people shy away from using that word
and use words like differently able and things like that.
And I can't speak to everyone, but the majority of
people disabilities I've spoken to can't stand all these funny
(30:46):
little words. Instead of using disability, just call us disabled
and those sorts of things. But I have come across
some people who don't like the word because of the disabled.
So again coming back to this idea of everyone is different,
ask the individual, just ask it's yeah, yeah, And to
be honest, I prefer to just calling you lixa Yeah, that's
(31:09):
exactly right, that's exactly right.
Speaker 2 (31:12):
Yeah, you know so. And I will offer if I
and have always done this, if you know, I see
someone struggling or you know, needs a hand with a wheelchair,
or you know, some groceries or whatever. And I've had
people that have loved the help on people that have
(31:32):
told me to piss off each their own yep. But
is it appropriate to approach someone and ask them, you
know that might be in a wheelchair, like, hey, do
you need a hand? Or is that offensive?
Speaker 1 (31:46):
I personally don't mind it defensive and knowing that your
heart's in the right place. And I used to see
example the other day when I was speaking about something.
I'm not that strong, but going up hills, I'll have
people come up to me and say, do you want
to help up that? Hell out mean, yes, please the chair.
But it's when you go in and just start pushing
(32:11):
the wheelchair or grab the groceries and assume that they need.
Speaker 2 (32:14):
Help, or as in someone just goes and grabs it off.
Speaker 1 (32:17):
You just starts pushing the wheelchair or going to the groceries.
That's that's when it becomes the problem. I even heard
of people who use a white cane for walking. People
think they're helping by picking up the cane and placing
it and that that's really so intating as well. So
I personally wouldn't have a problem with that, and depending
(32:39):
on the situation, I'll be incredibly grateful. I've had people
come up to me in the supermarket and say, can
I grab that for you on the top shelf. I'm like, yes, please,
because even though I can, I can stand when I
need to. It's very very taxing. Have you found people
to be kind most of yeah, and I keep in
(33:00):
mind that people's even if they don't use the right words,
necessarily their hearts are in the right place and they
mean well. And I used to be that non disabled
person who probably said the wrong thing. And so now
when I have people coming up to me and looking
a little bit scartered, oh I don't want to offend like, oh,
(33:20):
that used to be me, So I can give them
a little bit of compassion empathy.
Speaker 2 (33:24):
Yeah. Yeah, so now a bit of goss. How have
you and rend me.
Speaker 1 (33:31):
My gorgeous husband? Yeah? We met online because I no
longer play competitive team sport, which I used to, no
longer worked in an office which I used to do,
and was the way to meet people and didn't enjoy
going to bars and things because you just get beer portal.
So we met online.
Speaker 2 (33:51):
Love it. So how long got did you guys state.
Speaker 1 (33:53):
For until we got married?
Speaker 2 (33:56):
Yeah?
Speaker 1 (33:56):
About four years.
Speaker 2 (33:58):
Issues and married and they have a boofer, little Diurgie.
That's very cute.
Speaker 1 (34:02):
I have to say, Louis the little gremlin. He's about
four years old. So we've been married now for about
eleven years.
Speaker 2 (34:12):
Eleven years. Yeah, when you and Ran first started dating,
I'm assuming on your profile you were very open about
that you had a disability. How was that perceived by
other people online?
Speaker 1 (34:28):
There's there's other people in this rain, okay. So I remember,
for example, the one of the few times I actually
did go out to a bar because I can stand.
I was standing at the bar, so this cracking guy
across the from bar making a bit of eye contact,
and then he started to walk around in the bar
and I'm like, ohoh, sat down in my wheelchair, and
(34:49):
then he took one look at me in the waw
chair and just kept on walking in the other direction.
And I met some other great guys online, but they
just won't write for me. So Gren wasn't the only
guy to be nice. Someone nice, but I'm com so superficial.
And he's hot as well, so can I say, I'll.
Speaker 2 (35:09):
Look at him sitting over there guys and he's all embarrassed.
Speaker 1 (35:14):
I love it. I love it.
Speaker 2 (35:16):
And you actually have to see these guys together. They
really love each other. It's really beautiful. It's really beautiful
to see. So how many people in Australia would be
classed as having a disability?
Speaker 1 (35:28):
So all one?
Speaker 2 (35:29):
Is it? One in ten? Would it be two in ten?
Speaker 1 (35:31):
Twenty percent of the global population, twenty percent of globally.
I think it's a little bit less in Australia. Yeah,
it doesn't include people who choose not to identify as
to say, well, maybe have a chronic illness or your
diverse or something that. So it's probably much much larger.
It has topped and changed a little bit. I saw
sixteen percent and globally twenty one in five people is
(35:55):
a good way to think about it.
Speaker 2 (35:56):
Oh my lord, you know. I was in New York
at Christmas last year with my daughter and I had
just interview Dinna Asha Pelapana, who is the most great
divine person, and we all fell in love with him
here and it made me really aware walking around New
(36:17):
York that I didn't see anyone in a wheelchair, and
walking around or getting around New York would have been
a shit show because of all the unevenness of all
the It must be so complex for someone to get
around New York and see one of the most remarkable cities.
(36:39):
I'm sure it can be done, but it must be
quite complex for someone. Yeah, have you have you been?
Speaker 1 (36:46):
I've been to New York and fortunately I was there
with Ran and I couldn't have done it by myself.
So we love to travel, but I won't do it
by myself, even something as simple as going going to
Sydney for work, counter that myself because I can't take
the risk that if there's a hill and I can't
(37:07):
get up it because I don't have a powered chair. Yeah,
and things like that.
Speaker 2 (37:12):
But did you find that in New York that it
was very good?
Speaker 1 (37:15):
It was a bit of up and down, although I
had my little eighteen month old nephew with me, as
well as my sister and her husband, so I think
we were stuck to a lot of the flat, perfect
flat areas. Yeah, what a city. It's beautiful, but the
places that we go shouldn't just be shopping centers because
they're flat. There's plenty of places that we want to go,
(37:39):
but it's you know, ald parts of Italy, in Venice
and things like that. But I just look at the
architecture and think that's gorgeous. But I could never do.
Speaker 2 (37:48):
It if people wanted to try. And and I don't
know now with the legislation having been passed about a
reduction in n dies, is there any way that can change?
And if there is, what can we do to try
and get that funding back.
Speaker 1 (38:06):
That's a good question. And Bretta and I have been
on the phone for months and now to the NDIS
and that's just one one person, one of us. And
I've often often said that I've got enough trouble with
the paperwork, but I don't have an intellectual disability or
anything like that. So I really feel for people who
who struggle with the paperwork and don't have that support team.
(38:29):
A really complex it's amare, and for a good reason
in some cases, because unfortunately there are people who will
take advantage of that. And there's all sorts of enforcements
in place to make sure that doesn't happen, which is great,
but sometimes they do stop funds from coming into places
(38:52):
where I needed.
Speaker 2 (38:53):
Yeah, So if someone wanted to support NDIS being returned
back to you know, supporting more people with the disability.
How do we make life easier for our brothers and
sisters that have a disability.
Speaker 1 (39:12):
They're getting in touch with local moments would be a
good start. There are some wonderful platforms online and whether
it's individuals who do a lot of advocacy around NDIS
or organizations themselves rather than the individuals getting in touch
with them and finding out specifically what with the best avenues.
Speaker 2 (39:33):
And you think it's something we really need to work
towards as a community.
Speaker 1 (39:37):
I think Australia is incredibly fortunate to have the NIS.
Unfortunately there are idiots for there are a better word
I could don't want to don't want to spoke too much,
but people taking advantage of the system. And while I
can completely understand what this new legislation, I looked at
a list of things that have been excluded and was
(39:59):
horrified because people have obviously been claiming for certain things
and the text doesn't need to pay for half of
those things. But by the same token, there are plenty
of other things that people's disabilities to need, and I
think they're now starting to catch on to the fact
with Kurt Ferny there, etcetera, that people with disabilities need
(40:22):
to be driving the conversation. It's not good enough to
have a bunch of able bodied, middle aged white heterosexual
guys sitting around a boardroom deciding what disabled people need.
You need our voices in that conversation.
Speaker 2 (40:34):
That I couldn't agree with you more. I have enjoyed
this so so much. Thank you for being my very
special last guest for your last I know, I actually
feel like it was all meant to be. Such a
great chat. Have a wonderful, wonderful Christmas, and thank you
for taking the time. And thanks friend for helping Lisa
(40:55):
get here. I really appreciate it.
Speaker 1 (40:57):
Thanks Bagging, You're welcome.
Apoge Production.
Speaker 2 (00:11):
Hi, my name's beck Woodbine and welcome to Tenderness for Nurses.
I'm grateful for the person that I have the opportunity
to be.
Speaker 1 (00:19):
So I hit it and parked it for Nelly four years.
We always have free will, We always get to choose.
We are autonomous.
Speaker 2 (00:28):
Hi everyone, thank you for tuning back into ten and
Ess for Nurses. Well, it's the last episode of twenty
twenty four and we have the amazing Lisa Cox joining
us today to have a chat and I'm very excited
to share her story with you all, which is quite remarkable.
But before we get underway, I just want to say
(00:50):
a really huge, heartfelt thank you to everyone for your support.
The podcast is just tripled in size and I can't
even comprehend it because in season one I just was
hoping that one person would listen to it, and here
we are now with thousands all over the world listening
to the podcast, your support, sharing the podcast with friends
(01:13):
and colleagues and listening. I cannot tell you how much
that means to me. The idea of the podcast initially
was just to help people show tenderness to themselves and
to each other, and through the knowledge and vulnerability of
the stories that have been shared by my guests. The
(01:33):
feedback has been that people are showing kindness to themselves
and to each other, and you're learning to just give
yourself a little bit of space and be gentle with yourself.
And for that, I humbly and gratefully say thank you
to all my guests who have given up their time
to come and chat and share their information and knowledge
(01:54):
with you all. So please have a safe and wonderful Christmas.
Don't forget to share, review like or don't like. It's
each their own. But the idea of this podcast is
to be kind to each other and ourselves, and I'm
(02:15):
excited to let you know there's some pretty big things
happening next year, so stay tuned. So now over to Lisa.
Thank you so much for coming in.
Speaker 1 (02:25):
Thank you very much for having me. It really is
great to be here.
Speaker 2 (02:29):
We actually ran into we live in the same precinct,
and I ran into Lisa quite probably eighteen months ago,
quite early in the morning, and you were coming back
from training, and we had a bit of a chat
and talked about the dogs or whatever, and then a
mutual friend of ours, Carney, mentioned your name and showed
(02:53):
me a photo. I was like, hang on, I know
that person. She lives where I live. And then of
course we ran into each other and I had to
hit you up to come and speak on the podcast
because you are amazing advocate for disabilities. So do you
want to tell us a little bit about your journey?
Speaker 1 (03:11):
Yeah? Sure, And it has been been a journey for
whatever a better word. And I suppose it all started
twenty years ago when I was at Melbourne Port my morning,
flying home to see my family doing what a lot
of people at the age of twenty four do, climbing
corporate ladder and I'd been to UNI loving life and
(03:32):
I had a brain hemorrhage at Melbourne Airport, at the airport.
At the airport, I don't remember that time, but all
the accounts told my family apparently I was stuttering my words,
they wouldn't let me onto the plane and then I collapsed.
So I never made that flight, but spent the next
(03:52):
three weeks in a coma, two months on life support,
and over a year in hospital after that. So that
first year in hospital was fun stuff and it was
it was It was really really tough understand way, but
I was a space cadet for the first few months,
because I was on so much medication, my hands and
(04:13):
hands and feet were quite literally rotting off, all turning gangerous.
So my left leg, all of my right toes a
night of my fingertips were appitated in the end from
the medication. So the medication they put me on was
brilliant because it saved my life. But it's a side
effect that it took all the blood from my peripheries
(04:33):
back to my vital organs, and so my nose turned
back for a while. But I got to keep that,
which is great. But as a result, I've got osteoarthritis
everywhere all my joints. Is a normal thing as well
that it can cause joint issues. I've had one hip replacement,
so a stroking heat replacement, all the things that happened
(04:55):
to old ladies. It was hard to four and obviously
my permanent brain injury now from the stroke, my speech
has been affected. I'm over twenty five percent blind and
have things like epilepsy, kind of pain, chronic fatigue and
all those sorts of thanks of the usual side effects
of a brain injury.
Speaker 2 (05:15):
Was the brain injury? Did they or could they explain
why it happened so spontaneously, and why are someone so young?
Speaker 1 (05:24):
So I was a fit, healthy twenty four year old,
going to the gym a few times a week, eating
all my vegetables, that sort of stuff. Yeah, didn't have
any of the usual I suppose lifestyle factors that were
meaning someone's more likely to have a stroke. But they
did a lot of tests until my family that it
was a streptogogust a virus. And one of the specialists
(05:45):
said to quote him, bloody bad luck. So we still
don't notice this day where I picked that up. Could
have been the supermarket, It could have been anywhere.
Speaker 2 (05:53):
It can be anywhere.
Speaker 1 (05:55):
Yeah, so that's what caused the brain hemorrhage, and yeah.
Speaker 2 (05:59):
And the rest is history. Exactly how did you find
that time in the hospital? I mean, I can only
imagine you were really once you got your bearings that
you're really angry and upset and worried about the future.
How did you cope with that? How did your family
(06:20):
cope with that?
Speaker 1 (06:23):
My family blessed them that for the first couple of months.
I can't remember any of it before or after the
brain hemorrhage, and I was completely untworry what was going
on around. They remembered every minute. Unfortunately they got to
call because I was in Melbourne, they were in Brisbane.
They got to call that night to say this has happened.
Come to Melbourne. We don't think at least it will
(06:44):
be alive. In the morning they arrived, obviously it was
the head of the largest intensive KENE in the Southern Hemisphere,
said she's my father, sixth person here. You may have
to turn off her life support if things don't improve.
So for two months they sort of rock up to
the hospital every morning, not sure if I'd be dead
or alive. And to this day I feel terrible for them,
(07:07):
even though some of my fault, I still feel like
it is and I was just off with the fairies
in any comera and yeah, yeah, so they have been
my biggest support through all of this, absolutely wonderful. And
when I came under the coma, I was many backed
to Brisbane and then spent the remaining months in hospital
(07:29):
and then depending on what surgery I needed, what had
to be cut off for something that'd taken me to
a hospital for a few weeks or another hospital, but
they drip fed me information In terms of day one,
they didn't say, here's what happened. Yeah, but slowly, bit surely,
I'm like, oh, so that happened, and that happened. And
then in the very very beginning, because I've been lying
(07:52):
flat for two months, I didn't have any course stability.
It's still pretty weak today. But I couldn't sit up
and have a look around and see what was happening.
I just knew that every day that the nurses would
be doing something to one of my feet, and only
found out months later that it's because my feet had
(08:15):
turned gangerous of one of them in particular, and it
was going to have to be amputated. So they did
tell me that month before, and I cried my eyes.
That was really upset, but woke up the next morning
was like I'm completely gotten what And so they started
not to tell me day after day of today it
would be like ground hole day. Basically is that a
(08:36):
blessing or is it a curse? I was kind of
glad that they didn't because I just wasn't. I wasn't
remembering anything, and when they did tell me, I did remember,
And the next morning I woke up and swollen eyes
and still remembered I specifically remember our nurse walking into
the room just dumping a bit of brushes on my
(08:56):
bed about prostatic limbs. I'm like, oh it, I was
mentally not prepared, so there was that was a bit
of a shock. And then that.
Speaker 2 (09:08):
Wasn't particularly kind to do it that way.
Speaker 1 (09:11):
Yeah, it wasn't. It wasn't, but I suppose they they
didn't know. They didn't know that, and they certainly meant
no malice, and then I were incredible. But and this
is not a reflection of the healthcare system or anything,
because it's brilliant. But I've spoken and written before about
(09:35):
how my perceptions of what disability would look like had
in part been shaped by the staff who would walk
into my room go you're going to be disabled for
the rest of your life, like it was a death sentence.
And I was already upset because I later realized that
was because I had only twenty four years worth of
(09:56):
media stereotypes in my head. But on top of that,
had everyone around me talking like, we're all about to
go to a funeral because I was going to be disabled.
But that's not to say it should have been let's
celebrate sunshine and raises at all. But it's a how do.
Speaker 2 (10:13):
You find the medium, like I suppose, how do you
find the sweet spot in that conversation.
Speaker 1 (10:21):
Yeah, it's it's really really hard, and I certainly can't
can't speak for everyone, but that was just one thing
I noticed that everyone around and was like, Oh, you
got to be disabled. That's that's terrible. It's the worst
thing that can possibly happen. And I don't want to
minimize how horrible it was and and everything like that,
(10:42):
but it's certainly, yeah, helped, It's certainly shaped a lot
of shape my mood, and.
Speaker 2 (10:49):
I think it shaped your recovery when you had that
mindset and people, you know, stuff that was saying you're
now handicapped initially. Do you think it changed how you
recover it or perceived yourself.
Speaker 1 (11:07):
That's a really good point. And I'm going to refer
to some work coming at the moment with some students
around rehabilitation and doing some consumer advisory work, and they're
all physios and then talking about key outcomes and the
metrics of that as are when the patient can walk again.
(11:27):
And I sort of fly to them in one of
the meetings that while so many people want to walk,
you can't. It's not either possible for everyone or not
realistic for everyone, and just by having that as the
only outcome. I originally thought coming out of hospital that
I have to walk again because that's the only way
(11:50):
to recover. And now twenty years on, I've been a
full time wheelchair years that for years and years and years,
and travel the world and go to the gym. It
certainly gives me more freedom and independence than.
Speaker 2 (12:02):
Was lying in the bed.
Speaker 1 (12:05):
Yeah, then lying in the bed, and then was explained
to me by staff.
Speaker 2 (12:11):
So I just want to explain to you guys, Lisa
is absolutely stunning woman, very eloquent. Even though the brain
hemorrhage has impacted a little bit of her language, you
can tell highly educated, thoughtful in her choice of words,
(12:32):
dresses beautifully you know. Yes, there have been some imputations
to fingers and to your feet, toes and nine fingertips,
but she's super, super independent, which I think is pretty
(12:53):
remarkable considering where you've come from.
Speaker 1 (12:57):
Thank you.
Speaker 2 (12:58):
You could have made a choice. I suppose to not
be where you are now as well.
Speaker 1 (13:05):
Yeah, it would be very easy for me to not
decide to do a lot of things I do, but
I do them because I'm so grateful to be able
to even though I don't drive a walk that doesn't matter.
I can't do those things, but I still can do
a hell of a lot of stuff, So I have
(13:26):
a lot of gratitude for that. If my brain hemorrhage
had been an inch up, down, left or right, we
wouldn't be having this conversation today. I wouldn't have written
books on his head, talk me doing my PhD, all
those sorts of things. This wouldn't be happening.
Speaker 2 (13:39):
Okay, so tell us about your PhD.
Speaker 1 (13:42):
There's not a lot to say at the moment. At
the moment, I'm really excited about it. But talk to
me in a couple of years and there might be
another story. But it's what I've been on my soapbooks
about for many, many years, which is the representation of
people with disability impacts our employment upcomes. So on a
(14:04):
really big scale, it would be how disability in all
forms of popular culture influences social arte comes like healthcare, employment, education.
But to make that really specific and narrow it down,
like you have to do for a PhD, it's just
advertising and employment. Okay, So what was your background before
you were My background wasn't advertising. So I was a
(14:25):
copywriter and so all the as you see on TV,
I'd write the scripts for those the print ads, I'd
the headline, all the words.
Speaker 2 (14:34):
You now go into hospitals and talk about disabilities and
management of disabilities to I'm assuming nurses as well as physios.
What are the key points you like to talk about.
Speaker 1 (14:49):
I do a lot of work with the Queensland Collaborative
around press injury prevention because I had three press injuries,
including a Stage four in my sacram and often I'll
speak at educational seminars or sometimes medical con differenstans were
I'm the only person in that room without a medical
(15:09):
degree or any any qualifications, but I have lived years
of experience, so you need both. On one's not superior
to or another, you absolutely need both. So a few
of the key takeaways from that is to understand the
importance of family, friends, caress, whoever it is in support,
(15:33):
the support crew or the I'm not sure what you
call them.
Speaker 2 (15:37):
All the support people to come up and like are
with you.
Speaker 1 (15:40):
Yes, yeah, but as part of the care team that's
thrown something to say. So an example of that my dad.
I was very fortunate. My parents have retired, so who
was at me with me every day at the hospital
and was very hands on in terms of if I
had to lift my leg or with my arm, things
that I couldn't do for myself in those first early months.
(16:01):
But unfortunately, because he wasn't a doctor of surgeon, he
was often overlooked in terms of how much he could
offer and how much he could help because the nurses
were run off their feet. They did an amazing job
and they were they were so so busy. But if
only they'd said to him, try a B and C
(16:22):
and the pressure injuries, it will it will help a lot,
but or could have been avoided potentially. Yeah, So those
first two months on life support, one of my pressure
injuries on the back of my head as well. Yeah,
on the on the back of my head to have
a bull spot which is so much on my head
dresser remastering around the time, on my take and on
(16:45):
my heel, on my remaining foot.
Speaker 2 (16:48):
When I went through and did my nursing training at PA,
that was drilled into us. You know, every few hours
we would turn our a couple of hours actually, we
would turn our patients from one side to the other
side back. When I and I did a lot of
night duties. I would, you know, do a sponge bath,
we'd check their back, that sort of thing. I mean,
(17:09):
that was just nursing one oh one faus and before
I set up my own clinic and I was still
doing palliative care, I used to do night judy. It
was when a hospital, but that now has been shut down,
and I used to wear with this an amazing nurse
called Mary, and Mary and I would just get together.
We'd have our trolley, we'd get our water, you know,
(17:32):
and we would do turns and washers on everybody. And
there were tool us that used to run I think
it was a twenty two bed ward and the tools
would just go through and do everybody, just make sure
everyone was done. But recently, well not recently, probably just
before COVID, I was in hospital in a private hospital,
(17:55):
and that didn't even I didn't even get a post
top sponge. I don't even know if that stuff even
happens anymore in hospitals because I haven't worked in a hospital.
But for me, it was so important to make sure
and maybe it was the hospital training or how I
was trained, but it was so imperative to keep moving
that patient so that you didn't get a bed saw
(18:16):
there still happened, and if they happened, you then manage them.
But I don't know, do you find that that happens
when you're in hospital now? They don't do that well.
Speaker 1 (18:27):
I suppose one of the other things I talk about.
I show photos of my hands on my feet quite
literally rotting off and I couldn't feel a thing. I
didn't know that my feet were gangrass and black and
weeding because I was on so many painkillers. But that
stage for my sacram how killed. I don't know if
it worked its way through the painkillers. And my point
(18:50):
when I present on this is that you may have
a patient with really complex trauma and bit's falling off everywhere.
That doesn't mean that a tiny little pressure injury somewhere
on their sacrumd body anyway can't be the most intense
pain that they're feeling. So pressure injuries are really really deceiving.
Just because they're not big and bleeding everywhere and discussing
(19:14):
doesn't mean that they're not the most intense pain.
Speaker 2 (19:17):
I've fetured my sacred at the end of last year,
and I have to tell you it was the most
painful thing that has And I've had surgery and whatever,
the most painful thing I've ever done, like ever had happened.
I cannot tell you the pain and all the nerves
that come out of that area, and you know that
(19:39):
go to your bladder and your bow and your legs,
and so in my mind, I can absolutely understand that
that must have been unbelievably painful for you.
Speaker 1 (19:51):
So agonizing, and that's you bring up a point that
all the nerves gong for. There's the assumption that pressure
injuries disappear, and by that I mean it's not as
red as it was, but there are still surfaces I
can't sit on because it's so painful, and still still
twining is on things in the gym at certain angles
(20:14):
if I you know that, on that sacrament all that
really hurts, and why not do that? So there's this
assumption from staff that oh, just goes away, you'll get
over it, it will heal, But those nerves don't. Now the
skin might.
Speaker 2 (20:28):
Yeah, I can hand on heart to you. I still
have issues and mind was a fracture and I didn't
break the skin, so I can't even comprehend if it
was deep. You know what grade for yes in that area,
which is a that's nasty.
Speaker 1 (20:44):
Yeah, there was bone unfortunately.
Speaker 2 (20:46):
So you know it just actually gives me goosebumps.
Speaker 1 (20:50):
Yeah. So every morning I'd get transferred by some lovely
waters and put onto a shower trolley. Yeah, and I
joke about it hosed down like a race horse. But
and that absolutely just killed just just lying on that surface.
But we soon worked out that putting it a gel
cushion under one hip, yeah, that's all took. But that
(21:12):
was an even even lying on the bed. Dad and I,
my eighty year old father, worked out that if we
scroll up a Queensland Health towel and shove that under
one hip, then yeah.
Speaker 2 (21:26):
So takes the pressure of it.
Speaker 1 (21:27):
Bit of trial and error on our part.
Speaker 2 (21:29):
I love it. I love this. Your dad was so innovative.
So and what was the impact on your parents?
Speaker 1 (21:38):
Oh God, I can't speak for them, and I can
only imagine that they were initially devastated because parents shouldn't
have to bury their children and to have none of
the It's not like they were expecting something to happen
because I was the fit and healthy one like all
of my brothers and sisters. And it really just just
(21:59):
came out of the blue. But I can only guess
that that were just absolutely devastated.
Speaker 2 (22:05):
Moved back up here to Queensland. Were you able to
get a great network of people to stay with you
to help you, or did your parents take all that
on themselves.
Speaker 1 (22:15):
My parents took that on. Initially I moved back home
with mom and dad, which is just what every twenty
five year old wants to go. Yep. But they lived
in this two story brick house, so I didn't get
upstairs for the first while, but just stayed down in
one of the spare rooms and couldn't wait to get out,
But at the same time was really grateful to be
there because it was a roof of my head and
(22:37):
someone to help me get back to it. But I
had to relearn on the basics. Initially in hospital, I
was just learning to sit up again and speak and
brush my own teeth. But then moving home was doing
the basics like making a cup of coffee or a
tea or something like that, until eventually I can move
out and move out on my own, not too far
(22:59):
from them, so they could still come visit and drive
me to appointments, which they doing a lot of in
the early that.
Speaker 2 (23:06):
Was that important for you to get your independence.
Speaker 1 (23:09):
Yes, it was very very They used to call me
Miss Independent in the hospital because the nurses were beautiful
and we're just you know, i'll help you, I'll do
that for you, and like, no, I'm going to do
it myself. And I'd failed miserably half the time, but
I still wanted to give it a red hotel. I
put a red hot crack because I knew that to
(23:29):
move out on my own, or to even just be
home all myself, I wouldn't have or I didn't want
to have a bunch of support around me twenty four seven.
So getting that independence back, and it was it was
kind of funny because I'd been this fierce, ficy little
woman beforehand, and I'm like, yeah, I can take on
the wall. I can do it. Can someone please tell
my shoelaces?
Speaker 2 (23:49):
Like I.
Speaker 1 (23:51):
Was so incapable of doing everything, But yeah, I still
wanted to give everything. I could have read helt cracks.
So there were things that the nurses like, you can't
do that, it's not safe. Getting myself onto the shower
chair in the mornings, and just getting the bathroom, like no,
I'm going to I'm going to do that and round.
I'm not recommending that people go against you.
Speaker 2 (24:11):
Would have been the nurse's worst nightmare. I was.
Speaker 1 (24:14):
I was, and some of them have have told me
that over a laugh.
Speaker 2 (24:19):
I love it. I'm so impressed with your positivity. Was
that a trait of you prior? Mum would say I
was that determined?
Speaker 1 (24:31):
Determined a little just running around and always saying why
so the doctors. I know the doctors as well, instead
of just saying this has happened, and this is why.
I'm like why. I wanted to know that the background
as to why everything was happening. Even though I didn't
didn't have that medical background, I still wanted to know why.
Speaker 2 (24:52):
But you have a right to understand that well, ask
those questions, and there was there was no I didn't
have an iPhone back then or a smartphone.
Speaker 1 (24:59):
And I'm kind of fortunate for that way because these
days I'm told something and straightaway I'm on Google, so
you know, put meant as well not just Google search.
Speaker 2 (25:08):
Yeah. Put. Men's amazing. That's a good one.
Speaker 1 (25:11):
It's it's good. But I probably read things I shouldn't
be reading. And my doctors used to talking off the
ledge in terms of moving in his office going I
think I've got X, Y and Z, and it's like, really,
let's talk about that.
Speaker 2 (25:23):
So you moved out on your own. I'm assuming you
had some amazing support obviously from family and friends. You
would have then also needed to have ots helping you out,
physio social workers do they really no social work and psychologists?
(25:44):
Did you? And you had that team around you? Do
you still have a team around you like that?
Speaker 1 (25:50):
I do. It's a it's a different team and changes
year to year. But I was going in for weekly
physio as an outpatient. After that first year, when I
was technically discharged, I'd go back into physio and then
not really any ot. So I was I was a
professional writer and losing all the tools of my trade,
(26:11):
my fingertips, my eyesight, and my part of my brain function.
That to me was more devastating than losing the ability
to walk. And so I bought myself the cheapest laptop
I could when I got back to mum Dad's place
and just sat at the kitchen table and taught myself
how to type Wow with three fingers.
Speaker 2 (26:31):
That's so cool.
Speaker 1 (26:33):
So now I write still, But that that was one
one thing that I really wanted to get back because
there's really great text voice to text soft whatever. Because
my voice is a bit funny. Sometimes it doesn't always
work the best.
Speaker 2 (26:49):
But I'd be amazing for you now, yes, yes or no.
Speaker 1 (26:53):
Yeah, it's getting getting my head around all the all
the new tech, but just being able to put my
hands on keyboard and write that was that must be
really want to happen place. Yeah, it's I hope lace
writing with you.
Speaker 2 (27:08):
And I don't want to sit here and just you know,
talk about the past and bring all that sort of
stuff up, because I'm sure you know everyone does that.
What I'd love to talk to you about is the
changes you want to see around people with disabilities and
what's happened with NDIS and the funding that's come been
(27:29):
taken away from that, and you know, getting onto an
airplane and how they can make that easier for you.
You know, what are some of the things that need
to change to make life simpler for someone that might
be in a wheelchair.
Speaker 1 (27:47):
Okay, so much needs to change, But at the same time,
I don't want everyone out there to think, oh, it's
too overwhelming, I'll do nothing, because sometimes the changes that
need to have made are so so simple, whether it's
just addressing somebody differently, because that's the other misconception that
where and everybody with the disability is the same. But
(28:09):
you can have two people with the same diagnosis who
are completely different. So I've often had a lot of
people say, oh, brain injury, strokes. Yes, my ninety year
old grandfather had a stroke. I know all about it.
I'm like different, twenty four year old woman. Not the
same thing.
Speaker 2 (28:25):
It's like MS. You know, a male has MS very
differently to a female, and two female with MS definitely different.
You know, it's horses. We're all different.
Speaker 1 (28:34):
Yep, exactly. And even I knew one person who was
a partial paraplegic and she thought everybody with everybody in
a wheelchair had bal bladder problems. No, that's not all
of us. But you know, some people's smilele injuries may
but you have to note that they're all all completely different.
(28:55):
So I do a lot of a lot of traveling
to work and with my husband, and getting onto an
aeroplane isn't too bad for me. But I know there
has been some really great workdown over in the UK lately.
Am not getting wheelchairs onto planes. But the thing for
me is that I actually want to get out of
this because it's it's great to get me from A
(29:16):
to B for half an hour or something, but to
sit in this for eight hours, I couldn't think of
it having worse.
Speaker 2 (29:23):
No.
Speaker 1 (29:24):
Yeah, and I have a pressure pressure injury cushion all
the time, but.
Speaker 2 (29:30):
Even sitting on that for eight hours, oh yeah, it's
still not going to help prevent an injury eight hours
down the track. You know, if your skin's compromised, you know,
So I can understand then. And also, I mean imagine
sitting in a wheelchair if you've got an eight hour
flight or a fourteen hour flight, yeah'd be horrendous.
Speaker 1 (29:51):
I know some people who may be a quadriplegic soul
or something like that. I actually want to stay in
the wheelchairs. But again, everybody is different, so you can't
just assume that old wheelchair users want to stay in
their chair or want to get out, understanding that we're
not all not a monolith and we're all very different.
Speaker 2 (30:09):
So the terms disability is it the correct term? So
for me to have introduced you someone that is a
disability advocate, is that correct? Am? I? Am? I addressing
you in an appropriate manner.
Speaker 1 (30:25):
For me, that's absolutely fine. And disability, generally speaking, disability
is something that people shy away from using that word
and use words like differently able and things like that.
And I can't speak to everyone, but the majority of
people disabilities I've spoken to can't stand all these funny
(30:46):
little words. Instead of using disability, just call us disabled
and those sorts of things. But I have come across
some people who don't like the word because of the disabled.
So again coming back to this idea of everyone is different,
ask the individual, just ask it's yeah, yeah, And to
be honest, I prefer to just calling you lixa Yeah, that's
(31:09):
exactly right, that's exactly right.
Speaker 2 (31:12):
Yeah, you know so. And I will offer if I
and have always done this, if you know, I see
someone struggling or you know, needs a hand with a wheelchair,
or you know, some groceries or whatever. And I've had
people that have loved the help on people that have
(31:32):
told me to piss off each their own yep. But
is it appropriate to approach someone and ask them, you
know that might be in a wheelchair, like, hey, do
you need a hand? Or is that offensive?
Speaker 1 (31:46):
I personally don't mind it defensive and knowing that your
heart's in the right place. And I used to see
example the other day when I was speaking about something.
I'm not that strong, but going up hills, I'll have
people come up to me and say, do you want
to help up that? Hell out mean, yes, please the chair.
But it's when you go in and just start pushing
(32:11):
the wheelchair or grab the groceries and assume that they need.
Speaker 2 (32:14):
Help, or as in someone just goes and grabs it off.
Speaker 1 (32:17):
You just starts pushing the wheelchair or going to the groceries.
That's that's when it becomes the problem. I even heard
of people who use a white cane for walking. People
think they're helping by picking up the cane and placing
it and that that's really so intating as well. So
I personally wouldn't have a problem with that, and depending
(32:39):
on the situation, I'll be incredibly grateful. I've had people
come up to me in the supermarket and say, can
I grab that for you on the top shelf. I'm like, yes, please,
because even though I can, I can stand when I
need to. It's very very taxing. Have you found people
to be kind most of yeah, and I keep in
(33:00):
mind that people's even if they don't use the right words,
necessarily their hearts are in the right place and they
mean well. And I used to be that non disabled
person who probably said the wrong thing. And so now
when I have people coming up to me and looking
a little bit scartered, oh I don't want to offend like, oh,
(33:20):
that used to be me, So I can give them
a little bit of compassion empathy.
Speaker 2 (33:24):
Yeah. Yeah, so now a bit of goss. How have
you and rend me.
Speaker 1 (33:31):
My gorgeous husband? Yeah? We met online because I no
longer play competitive team sport, which I used to, no
longer worked in an office which I used to do,
and was the way to meet people and didn't enjoy
going to bars and things because you just get beer portal.
So we met online.
Speaker 2 (33:51):
Love it. So how long got did you guys state.
Speaker 1 (33:53):
For until we got married?
Speaker 2 (33:56):
Yeah?
Speaker 1 (33:56):
About four years.
Speaker 2 (33:58):
Issues and married and they have a boofer, little Diurgie.
That's very cute.
Speaker 1 (34:02):
I have to say, Louis the little gremlin. He's about
four years old. So we've been married now for about
eleven years.
Speaker 2 (34:12):
Eleven years. Yeah, when you and Ran first started dating,
I'm assuming on your profile you were very open about
that you had a disability. How was that perceived by
other people online?
Speaker 1 (34:28):
There's there's other people in this rain, okay. So I remember,
for example, the one of the few times I actually
did go out to a bar because I can stand.
I was standing at the bar, so this cracking guy
across the from bar making a bit of eye contact,
and then he started to walk around in the bar
and I'm like, ohoh, sat down in my wheelchair, and
(34:49):
then he took one look at me in the waw
chair and just kept on walking in the other direction.
And I met some other great guys online, but they
just won't write for me. So Gren wasn't the only
guy to be nice. Someone nice, but I'm com so superficial.
And he's hot as well, so can I say, I'll.
Speaker 2 (35:09):
Look at him sitting over there guys and he's all embarrassed.
Speaker 1 (35:14):
I love it. I love it.
Speaker 2 (35:16):
And you actually have to see these guys together. They
really love each other. It's really beautiful. It's really beautiful
to see. So how many people in Australia would be
classed as having a disability?
Speaker 1 (35:28):
So all one?
Speaker 2 (35:29):
Is it? One in ten? Would it be two in ten?
Speaker 1 (35:31):
Twenty percent of the global population, twenty percent of globally.
I think it's a little bit less in Australia. Yeah,
it doesn't include people who choose not to identify as
to say, well, maybe have a chronic illness or your
diverse or something that. So it's probably much much larger.
It has topped and changed a little bit. I saw
sixteen percent and globally twenty one in five people is
(35:55):
a good way to think about it.
Speaker 2 (35:56):
Oh my lord, you know. I was in New York
at Christmas last year with my daughter and I had
just interview Dinna Asha Pelapana, who is the most great
divine person, and we all fell in love with him
here and it made me really aware walking around New
(36:17):
York that I didn't see anyone in a wheelchair, and
walking around or getting around New York would have been
a shit show because of all the unevenness of all
the It must be so complex for someone to get
around New York and see one of the most remarkable cities.
(36:39):
I'm sure it can be done, but it must be
quite complex for someone. Yeah, have you have you been?
Speaker 1 (36:46):
I've been to New York and fortunately I was there
with Ran and I couldn't have done it by myself.
So we love to travel, but I won't do it
by myself, even something as simple as going going to
Sydney for work, counter that myself because I can't take
the risk that if there's a hill and I can't
(37:07):
get up it because I don't have a powered chair. Yeah,
and things like that.
Speaker 2 (37:12):
But did you find that in New York that it
was very good?
Speaker 1 (37:15):
It was a bit of up and down, although I
had my little eighteen month old nephew with me, as
well as my sister and her husband, so I think
we were stuck to a lot of the flat, perfect
flat areas. Yeah, what a city. It's beautiful, but the
places that we go shouldn't just be shopping centers because
they're flat. There's plenty of places that we want to go,
(37:39):
but it's you know, ald parts of Italy, in Venice
and things like that. But I just look at the
architecture and think that's gorgeous. But I could never do.
Speaker 2 (37:48):
It if people wanted to try. And and I don't
know now with the legislation having been passed about a
reduction in n dies, is there any way that can change?
And if there is, what can we do to try
and get that funding back.
Speaker 1 (38:06):
That's a good question. And Bretta and I have been
on the phone for months and now to the NDIS
and that's just one one person, one of us. And
I've often often said that I've got enough trouble with
the paperwork, but I don't have an intellectual disability or
anything like that. So I really feel for people who
who struggle with the paperwork and don't have that support team.
(38:29):
A really complex it's amare, and for a good reason
in some cases, because unfortunately there are people who will
take advantage of that. And there's all sorts of enforcements
in place to make sure that doesn't happen, which is great,
but sometimes they do stop funds from coming into places
(38:52):
where I needed.
Speaker 2 (38:53):
Yeah, So if someone wanted to support NDIS being returned
back to you know, supporting more people with the disability.
How do we make life easier for our brothers and
sisters that have a disability.
Speaker 1 (39:12):
They're getting in touch with local moments would be a
good start. There are some wonderful platforms online and whether
it's individuals who do a lot of advocacy around NDIS
or organizations themselves rather than the individuals getting in touch
with them and finding out specifically what with the best avenues.
Speaker 2 (39:33):
And you think it's something we really need to work
towards as a community.
Speaker 1 (39:37):
I think Australia is incredibly fortunate to have the NIS.
Unfortunately there are idiots for there are a better word
I could don't want to don't want to spoke too much,
but people taking advantage of the system. And while I
can completely understand what this new legislation, I looked at
a list of things that have been excluded and was
(39:59):
horrified because people have obviously been claiming for certain things
and the text doesn't need to pay for half of
those things. But by the same token, there are plenty
of other things that people's disabilities to need, and I
think they're now starting to catch on to the fact
with Kurt Ferny there, etcetera, that people with disabilities need
(40:22):
to be driving the conversation. It's not good enough to
have a bunch of able bodied, middle aged white heterosexual
guys sitting around a boardroom deciding what disabled people need.
You need our voices in that conversation.
Speaker 2 (40:34):
That I couldn't agree with you more. I have enjoyed
this so so much. Thank you for being my very
special last guest for your last I know, I actually
feel like it was all meant to be. Such a
great chat. Have a wonderful, wonderful Christmas, and thank you
for taking the time. And thanks friend for helping Lisa
(40:55):
get here. I really appreciate it.
Speaker 1 (40:57):
Thanks Bagging, You're welcome.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Amy Robach & T.J. Holmes present: Aubrey O’Day, Covering the Diddy Trial
Introducing… Aubrey O’Day Diddy’s former protege, television personality, platinum selling music artist, Danity Kane alum Aubrey O’Day joins veteran journalists Amy Robach and TJ Holmes to provide a unique perspective on the trial that has captivated the attention of the nation. Join them throughout the trial as they discuss, debate, and dissect every detail, every aspect of the proceedings. Aubrey will offer her opinions and expertise, as only she is qualified to do given her first-hand knowledge. From her days on Making the Band, as she emerged as the breakout star, the truth of the situation would be the opposite of the glitz and glamour. Listen throughout every minute of the trial, for this exclusive coverage. Amy Robach and TJ Holmes present Aubrey O’Day, Covering the Diddy Trial, an iHeartRadio podcast.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.