[narrator] rachelle mcintyrehad everything she wanted. a life on a farm, a job teaching and two children. [rachelle] i am a country girl. being a mum, with that maternal instinct that i had... ...that is always whati wanted to do. [narrator] diagnosed withmultiple sclerosis a decade ago, ...her muscles haveslowly wasted. and so has her dreamof raising her family. she is 43 and livingin a retirement village.
it is not wherei want to be. it is not where a 43-year-oldwho has got... children...belongs. and it is not how i want... them to... remember growing upwith their mother... ...in an aged care facility. [rachelle] i wake up and you liethere and wait for breakfast. it's abut 8am when you hear the trollies.
that will be fine thank you. usually i'm cursingand saying... "i am sick of eating breakfast out of a bed." it is very hard to lift upwith your arm, ...when it is restingon this thing. that is my view thati see every morning. and i have seen itfor over a year now. i came here on the 1st july 2014. you can sit in bed sometimes for half a day.
sometimes you are seen toat about 9.30am. other days you can sitthere until 11am, until somebody comesto help you out of bed. i am just wonderingwhen i might get up? [carer] i am not sure.i am the floater today we will figure it out.i will talk to the others. do you have to be upby 11am for physio? [rachelle] no i won't begoing to that today. but i have to be outof here by about 1pm.
[narrator] rachelle was admitted to a rest home... when she developed a dangerous pressure sore on her lower back. her stay was only meantto last a few weeks. but she has now beenhere a year. the sore has healed but nowshe's separated from her husband ...and can't go home. [rachelle] glenwood masonic hospitalis an aged care facility. there are a few people whohave the starting of dementia. it is just...
...not what i want myboys to remember. and yeah... i have still got a lotof living to do. and my ultimate goal wouldbe to get a job... ...and be out there living. disability makes you face things,it makes you face your mortality. it makes you face that factthat your body has changed. it makes you face that fact that you have to do things in a different way. i was diagnosed with ms in 2009
although i had symptoms of msas far back as 1991. life is as i make it.it wasn't easy. and i do get really bad dayswith really bad pain, where i just screamat the world... and want to kick the cat and the dog ..and tell them allto go away. but life is okay overallbecause every day is different. by the end of the dayif the pain's that great... i just take myself down andtry and take time out for myself.
it's not easy when you're busy,like working full time is really hard ...because that work/life balanceis really needed. but i will get through it,its only for a short time. so i know that i can manageit for the next couple of years. but i do know that long termi will probably have to adjust... ...and try and findpart time work. so that i can still have that work,still have that life and balance. [narrator] multiple sclerosis attacks the nerve cells protective coating, ...exposing them to damage.
these attacks worsen with stress. only two years ago, rachelleused a walking frame. when she's feeling low it's the thought of her boys that gets her through. they visit on friday afternoons if it fits in with their sporting commitments. [rachelle] mum's were made to worry. i am a terribly worrier because i just miss them so much. [narrator] rachelle's finding itharder to be active in her boys' lives. amalgamated helicopters have offeredto take them all for a ride. [rachelle] this afternoon is going to be fantastic and i'm really excited.
when i talked to them last they were trying to get out of me... ...of what we were going to do. i didn't give away anything. [huhana] for rachelle it's hard for her to find activities... ...that she can do with two rambunctious and healthy boys. fishing, or going out biking with themany of those things it's all different now. so what do you do with two teenagers... when you have only got them for an hour and a half? so the relationship must be getting strained...
and that would be a hugeconcern i am sure. [rachelle] i grew up in the wairarapa. i was always outside and we had horses, cats and dogs. the boys grew up in thesame country atmosphere. now they live in eachother's pockets. on a perfect day what i wouldlike to be doing with my children, would be to be outside with them. i would imagine that they wouldwant to ride their motorbikes... and i would be onmy horse.
and we would just be together. [huhana] as a mum myself... i know that she would wantto be a part of their lives, would want to know howthey are doing. and want to be there whenthey have got needs. yet these teenagers are havingto deal with all the changes. one, mum's not coming back home. two, dad's not with mum anymore.and three, mum's condition is such... ...that mum may never be able to care for them fully.
[rachelle] i have never beenin a helicopter before. it's amazing when you seethe rivers all tangling round. and we did see a bit of snow. how was it? [boy] great. [huhana] the barriers for rachelleare going to be... she's in a rest home so she willbe losing contact with her friends, she'll be losing contact withfamily and with her community. and so one of the things isshe needs to get back out,
she needs to get her independence, and needs to be able to live her own life as she chooses to live it. [narrator] marie is rachelle's closest friend. she's trying to help her get out of the rest home. [marie] what's the plan for you going forward? [rachelle] to get out of the agedcare facility that i am in. [marie] so you have to set upan individual care plan? yes a timetable. what would be your biggest frustrationabout being in a rest home?
[rachelle] just not having any independence. [marie] a great thing that hashappened about you being in there... you have actually got yourselfin good health, which you weren't when you wereliving on the farm in that situation. so in some ways there have been some advantages. yeah. [marie] i know, hard to accept but yes. and that has helped give you the strength to want to step out on your own. when you first went in thereyou weren't very well.
and you have been able to get well and now you are strong enough to be out. [rachelle] yeah i had to be therebecause i wasn't able to stay at home. [narrator] rachelle dreamsof working again. but even getting out forthe day is challenging. rachelle relies on friends for transport. before her diagnosis, rachelletaught at opaki primary. she hasn't found thecourage to visit till now. [rachelle] definitely i wantedto be a teacher right from... when my sister and i usedto play schools.
we had blackboardsand things. so it was a given that i was going to be a school teacher. and it was something thati really wanted to do... ...was to play a role in other people's lives and help them. wow this is new this mural. how neat. wow. oh there she is! this is the woman thati have been talking about.
oh my goodness! this use to be my room. [teacher] rachelle was classicbecause we use to buy new text books... and rachelle always use to do the sniff test. she always had to smellnew text books. (laughs) [rachelle] i am a real book person. and the children in my classgot the "bug" also... because whenever we went to the library...
and there was a box of new books they would say, "mrs mcintyre there's a box of new books can we open them?" we would open the box and wewould dive in and they would... pick them up and what would they do? smell them.(laughs) my name is rachelle andi use to teach here at this school. i got diagnosed with multiple sclerosis,which affects the nerves in your body. [studen] how do you findways to be happy? well its the mum thing, i think of my boys and that makes me happy.
and i think of memories andmost of them make me happy. but sometimes they canmake me sad. happy is also... to think of what couldpossibly be in the future, that they might finda cure of this disease. and that can bring you happiness. it's amazing to be back here. and amazing to be in the classroomand to see children. being around children i think makesyou think back to your childhood.
and not want to... ...to be like i am now. and especially not want tobe where i am now. [huhana] when a diagnosis happensof any kind you go through depression, you go through anger, you gothrough doubt and denial, you go through why didit have to happen to me? and then you eventually come toa point of acceptence. everyone goes through itand i've gone through it. and every now and then yougo back through it as things change.
it's just a reaction to shock,it's a reaction to change. and one you accept thatthat change is not going to go away. once you accept that thatchange is there for good, then you go to the point ofbeing able to live your life. it's really important when peopleare first diagnosed with disability, to realize that there isa grieving stage. and to be supported through that grieving stage. so that when you have cometo the acceptence, you start to realize that there is moreto life than just your disability.
[narrator] rachelle needs inspiration. she's flying aucklandto meet huhana. [huhana] what she's got is not something... that needs to confine you toa rest home and 43 years of age. so i'm interested in meetingthis woman to be honest. and to find out what's makingher tick, why is she in this situation, and why is it she's not backhome with her whanau. hello! how exciting!
thelma and lousie. we are on our great adventurehow wonderful. [marie] what do you want to do mostwhile you're up there? jessie told me that he wantsa packet of cards from the casino. i'm looking forward to meeting the ladywho we're having dinner with tonight. that will be lovely and hopefullyyou'll get lots of inspiration. and hopefully she'll be able toplant some seeds. and work towards gettingme out of that place. to be me again.
[rachelle] i've never beento auckland... apart from going to the airportto swap a flight. and i've only done thatabout once. i did leave the countrysidefor a little while... because i went to palmerstonnorth teachers college. i went there for four years. palmerston north is a bigenough city for me. [huhana] it's good to have you here. [rachelle] and it'slovely to meet you.
i understand that you alsohave multiple sclerosis. how have you found it for yourself? ah...pretty gutted. [huhana] you didn't know what the future was going to hold? no, i didn't have any idea. [huhuna] and you weremarried at the time as well? you seem to be okay about it now or is it still a progression for you? [rachelle] oh...well you have tobe okay with it because it's life. i go through the grief cycle a lot.
what do you actually do? [huhuna] a bit of everything really. i'm a bit of a trouble maker.no. (laughs) it's called having the advantageof having a mouth. it wasn't until my disabilities came alongwhen i couldn't continue nursing. that i ended up realizing that i had to look at another career. and i got myself into university.i didn't think i would achieve. nobody thought i wouldachieve very much. but i got as and i thoughti must be able to do it.
there must be somethingworking up there. and i went on and then did law. and i got my masters in lawwith first class honors. and then i did my phd. rachelle you're in rest home care how is that feeling for you at the moment? that must be very hard? yeah very. [huhuna] one thing that youmight find that can help you... is having network connectionswith other woman...
who have got similar experiencesor have had similar lives and you can see where the potential is for each other... rather than living your lifein a rest home. and do you have anyplans for yourself? you were a teacher? yeah i've got a lot of plans. [huhuna] what are they? to get a job with children. [marie] and that was where we came up with the idea...
to do the remote teaching for children.correspondence teaching... because obviously rachelle's voiceprojection is not as strong as it was, so being in front of a classroom might be more difficult. but if you are on skype one-on-one. but because you have to be ableto get the resources together, so you really have to be down at thecorrespondence school in wellington. they have got children therewith disabilities... and so they need teachers that can understand their needs too. i think it's really important that teachers with disabilities be a part of that process
...as much as children with disabilities having to be a part of that process too. i agree. [huhuna] maybe there is a way that we can get past... those barriers of havingto get to wellington. there might be a wayof getting support. so let's see what wecan find out. wow you are amazing. no it's just we have to lookfor the solutions up here. if we give up thereis nothing.
and we can't give up eh. the thing is we area community. there's a big disability community out there. i don't know if youdo facebook? i do facebook. well we are goingto have to connect. i will put you onto the networks. because i tell you they are,people first... disability in society sees usas something out there,
...we don't have to feel disabledevery single day. and our community can help us to be strong because you can't do it alone. and i could really encourage younot to do it alone, because if you do it aloneyou are going to draw in. and you have got marie andi can see it means a lot for you. it's okay. [marie] don't you start me off.(laughs) [rachelle] i'm sorry. [huhuna] and i think that was fortuitous.
that friendship came right at the right time eh? [marie] most definitely.[rachelle] it did. but you need to think aboutnot trying to force this on your own... it will come but you have got tofind a network and a community... that can help you feel itthrough the bad days. so that you can findthe good days. oh wow! awesome! look down there.
wow that's wicked! [huhuna] rachelle needs to realizethat her life is not going to be the same. she has to do things differently. and she will need to challenge somethings in herself and in society... ...in order to achieve those goals. she can do it. she has to have that confidenceto step up and say... this is what i want and this is what i'm going to go for... ...and this is what i am going to achieve.
[narrator] huhuna has taskedrachelle to write down her goals. [marie] rachelle let's talk about your long term and medium terms goals. what is your long term goal? my long term goal is toget into my own home. hopefully by my birthday. [marie] and that is by april 25? sure is. so to be able to achievethis long term goal... we need to set up some more intermediate goals.
what do you think they need to be? firstly i would have to sort outthings with focus... in terms of what hours they wouldgive me to have a caregiver come in. so that i am livingsemi-independent. so contact them and also the dhb as everything has to go through them. [marie] and what about that career goalthat we talked about last night? would it be that your qualificationswill need a review? they do because your teaching certificate only lasts two years. [marie] when we came up against some of the barriers...
that will make it more of a challenge you have to come back to that "why" because it's the "why" that willalways see you through. why should ms inhibitit when it doesn't have too? [marie] let's do it! [huhuna] so this is wherei work up on the 4th floor. and i'm doing research on thehealth and disability needs of experiences of maoriwith disabilities. [huhuna] rachelle how haveyou along with your challenges? [rachelle] long term goal is thati am going to be living in my own home.
and i'm hoping that it willbe before my birthday in april. so that i can have a nicehouse warming party. [huhuna] awesome! another long term goal towards work? is to explore the avenues of beingable to be a long distance teacher. that's fantastic you have got a goal. you have got a coupleof goals. and within those goals, i imagine that it will be... ...having your children with you as well. and making sure that you have that relationship building.
but you've got to grab it. and it's really up to us because society isn't going to make it easy for us. society is not going to allow us to grab it. we've got to take itand grab it. and it's really completelyin our hands. no one else can do it. so i really want toencourage you... ...on the hard days reach out. on the good days just go forit as much as you can.
on the days where you need to rest,allow yourself to rest, it's okay. and be good to yourself. one thing i learnt a longtime ago... is that once you love yourselfyou will be fine. [rachelle] auckland we've beenand we've conquered! [rachelle] the future can be bright. and i intend to makemine be bright. [huhuna] come here finn,good boy. [rachelle] what does finndo for you?
[huhuna] well he can pull my socks off, ...and he can pull my shoes on. he gets the mail.and calls for help. and also he's a greatcompanion to have. [narrator] the 2015 attitude awardsare less than two weeks away. tickets have now sold out. but this year we're livestreaming the event. starting at 6pm ondecember 3rd. get to know the finalists
and have your say in ourpeople's choice award on attitudelive.com
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