Emma is a 25 year old psychology student. A severe brain haemorrhage on Christmas Eve 2003 began her journey of hospitals, rehabilitation wards, International travel and a deep sense of support, closeness and love for her family. Emma began taking photos and doing graphic design shortly after recovering from her illness. Since then, she has developed a bumper sticker that reflects her sense of herself and has grown a very impressive photographic collection of everyday life through her eyes.

FACILITATOR: Was your disability organic or acquired?

EMMA: Well it was kind of organic, but we didn’t realise. I had a malformation like an AMV that was formed in utero. It’s a lot of brain vessels in the brain. Obviously no-one was going to do a test for that because I was a perfectly healthy baby but then 2003 Christmas eve it suddenly burst.

FACILITATOR: How old were you?

EMMA: I was at work and it was rush hour because it was Christmas eve and I was serving a customer. During this time I’d studied two years at Uni in Journalism so my life was normal. Working part time, going to Uni, socialising etc and I was serving a customer and all of a sudden my right arm went quite numb and I thought, that’s a bit weird and I knew something was wrong and I said “sorry can you give me a minute” to the customer and I went out the back and I sat down and I said to the other staff “I feel really weird” and they were like “just chill out and take a minute” and I was like yep. And then the phone rang and I picked it up and went to say “ Good morning Telstra” and my voice was totally gone. That was probably the scariest moment of my life. It was totally gone and I looked at everybody and everybody started laughing because they thought I was putting it on and I just threw the phone and I didn’t know what to do and I just stood up and collapsed into a seizure and I didn’t have epilepsy or anything and that’s all I remember. 2 ½ weeks later I woke up from a coma and I just felt so bad for my mum and dad. They got a call around 11.30am on Christmas Eve just after it happened and they said “you’d better come up to the hospital, Emma is sick”. Mum and dad thought maybe she’s had an anxiety attack or something because I’ve always been a stressful person, putting too much pressure on myself. They were just thinking it was nothing and then they got to the hospital and they had to wait for ages and the doctor came out and he said “Emma has suffered a massive brain haemorrhage and we don’t think she’s going to make it, can you give me your permission to operate right now?” Mum and dad were like “Oh”. They said “Yes”, in absolute total shock..and the hospital counsellor came over and she said “so what type of girl was Emma?” And my mum said “Get out”. That was just crazy and that whole two weeks mum said the whole intensive care waiting room was full of people and that first night on Christmas Eve there was about 20 people waiting for me in that room and I had surgery for around 5 hours and the doctor came out and he was like “yeah we did it and she is in a coma and we don’t know if she’s going to wake up. If she does she will probably have a bit of brain damage and all this stuff”. And mum and dad said “As long as she wakes up we don’t care how she is”. So I woke up and about three months down the track I finally spoke and it’s like going back to a baby, my first word was mum. It was so weird and I had to learn how to do all the basic things again like eating and breathing properly and speaking. Now I have to write with my left hand because I’m paralysed down the right side of my body and they didn’t think I was going to be able to walk again. They just predicted the worst.

FACILITATOR: Like that counsellor who said ‘what kind of girl was Emma?

EMMA: That was really inappropriate at the time.

FACILITATOR: Before you’d even gone into surgery.

EMMA: And six months down the track I finally got out of hospital after maybe four big brain surgeries over the six months. I had a bit of a hard time at the hospital. That first operation can you believe they actually left the swabs in my brain. They said to mum and dad initially “she’ll only have this surgery” just one. Then they came back to mum and dad and said “we’ll have to go back in”. Mum and dad had obviously never been through anything like this and thought well obviously this is what they have to do. 

FACILITATOR: Trusted the doctors.

EMMA: Yeah. I remember waking up after that surgery, I probably screamed for six hours straight. 

FACILITATOR: From pain?

EMMA: Yeah. Because the swabs were quite low in my brain so they had to move, it sounds unbelievable but they actually had to move my brain aside and get them out. So waking up my whole head felt like it had been run over by a car it was very bad, it also didn’t help that they wouldn’t let mum or dad stay over night.

FACILITATOR: So you didn’t have support?

EMMA: It was just all these strangers, nurses and doctors, and I was like aahh. It was pretty bad. I had an infection and they moved me to the rehabilitation ward and that was a disaster. That’s a really long story but anyway. I started getting really bad migraines and mum and dad were like “this is not normal”. The doctors said this is part of the recovery from the surgery and mum and dad didn’t accept that because I couldn’t sleep during the night because I had such bad migraines, I’d just scream and cry and throw up and throw up and finally a doctor came over from the main hospital and said we’ll do some tests and they realised I had a massive infection.  It was kind of like meningitis and so they had to go back in for a third surgery and remove that whole part of the scull so now I’ve got a bone plate. It was just a disaster me staying in that hospital so mum and dad managed to pull some strings and get me transferred to the a private geriatric rehabilitation ward and that was probably the best thing they ever, ever did. I flourished there and learned how to do everything. I was walking the second day after I got there. Obviously not on my own I had three physios holding me up.

FACILITATOR: You were up though.

EMMA: I stayed there for about two months and that was really good. 

FACILITATOR: What was it like, you were 19 and you were living with people who were elderly?

EMMA: It was fine because all the staff like the occupational therapists and the physios and the speech therapists were all young, in there late 20’s so I got on really well with them. I’d eat lunch with them every day and sometimes they take me across the road to the shopping centre and I didn’t have sit about with the elderly people. Every hospital stay I’d have at least four visitors per night. Mum or dad or both would stay with me all day. 

FACILITATOR: So they were allowed to stay.

EMMA: Yep.

FACILITATOR: Unlike the other hospital you weren’t allowed to have people.

EMMA: I never really felt alone, there was always someone there when I needed it.

FACILITATOR: Are you originally from Brisbane?

EMMA: Yes Brisbane. It’s about 20-25 minutes from here. It’s not Brisbane City.

FACILITATOR: So it’s still quite a hike for your parents to come up to the hospital every day.

EMMA: Yeah but dad for his work he drives around everywhere everyday. It’s strange but they’ve never been concerned with driving.   I don’t drive because from all those initial surgeries I’ve now got epilepsy from all the trauma in my brain and you can’t drive when you’ve got epilepsy if you have occasional seizures. So mum and dad are like my taxi and they drive in all the time and my sister lives down the coast so we are always driving down there.

FACILITATOR: Were you driving before you had the accident.

EMMA: I loved driving.

FACILITATOR: How hard has that been.

EMMA: That’s pretty hard. For a while I didn’t notice it and then when I’m back home I’ll really notice it. I lived in Fortitude Valley for 6 months and then I had to move back home because last year I had an operation on my leg where they did a tendon-transfer in the hope of me having better mobility and improving the foot-drop.

FACILITATOR: So you’ve got more stability on the outside of your legs rather than having it flopping around you’ve got a bit more control over it.

EMMA: Yeah exactly. It’s given me more strength but not the desired outcome.

FACILITATOR: What did you want to have happen?

EMMA: I have to wear a brace to be able to walk without dragging my foot and because of that brace it goes up to my calf. So I’ve had to completely change my dress sense, it might sound vain but I don’t really care. I won’t wear shorts or a skirt or a dress if you can see my brace so I am always in pants. 

FACILITATOR: You are self conscious of it.

EMMA: Yeah. I love winter because I can get away with wearing stockings, beautiful boots and dresses because with stockings you can’t see the brace. But in summer it’s terrible. So that surgery last year was meant to allow me to get rid of the brace all together but that hasn’t happened so I think it’s kind of a failure. When I moved back home that first year it was two months after I moved home I was walking up the stairs, we’ve got a straight flight of stairs at home and I got to the very top stair and felt really, really weird and I just stood there and I felt like a seizure was coming on and I called out to mum and then it started happening all the way back down the stairs. 

FACILITATOR: So you fell down.

EMMA: Yes, splat at the bottom on the tiles. Mum saw me tumbling down the stairs and she thought I was dead because I wasn’t moving and they were trying to roll me over and supposedly I was going like that because in the process of falling down I’d broken my shoulder and mum just totally freaked out and she didn’t know what to do and our cleaner was there, this beautiful old lady and mum said “can you run upstairs and get Rian my dad out of the shower and tell him Emma has hurt herself”. The cleaner had to pretty much walk in on him in the shower. They didn’t know what to do, they rung the ambulance and went back into the rehab unit, this whole time I was kind of conscious and I had caused another bleed in my brain from the fall and whacking my head on the tiles.

FACILITATOR: You must have been pretty bruised as well.

EMMA: Yeah and so they had to operate again and after that surgery no-one would let me see a mirror for two days. And I was like “why is it that bad?”. And there were so many visitors and no-one would tell me. Everyone would tell me “it’s not that bad, it’s just a bit of bruising” I was like “Ok”. And then I was saying to mum and dad “ I just want to see a mirror, I don’t care”. So they showed me and my whole entire face like my nose and all my cheeks and everything, I’d looked like I had just been bashed, it was disgusting. 

FACILITATOR: From falling on the back of your head? 

EMMA: It was a tumble. It was pretty bad and you know how with a broken shoulder they can’t obviously cast it or anything so you just have to put up with it. It was quite painful so I’ve probably got 10 lives. I’ve had so many other things happen but anyway that’s that. That’s the next chapter of my life. I started against the advise of everybody at the hospital, I started a graphic design course because I thought there is no way I can go back to Uni and deal with the stress of doing journalism and doing exams. So I thought why don’t I try something totally random and different and do a graphic design course down the coast and I did that part time so that was 2005.   For my 21st birthday in July I asked mum and dad and they said “What do you want?” and none of us had ever been overseas apart from my sister she’d been on a cruise to Japan when she was in high school. I said to mum and dad “ I really want to go to Morocco and Spain” and they said “What!”. I managed to convince them. You can’t stop your life from going upwards and onwards. With all my friends doing so many things like still going to uni and doing this and that and getting great jobs, I just didn’t want to be stuck at home. I had to do something to take my mind of it and so in September of that year we went to Spain, Morocco, Portugal and Thailand and it was absolutely fantastic.

FACILITATOR: Who went with you?

EMMA: Just mum and dad. And on the way home through Thailand we met up with my sister and her fiancé and her best friend and two other people and we stayed there in Phuket and Bangkok and then we came home and then when I was at home it was like around October I think I was looking on the net and I came across the National Stroke Foundation in Melbourne and I spotted this little thing on the side of the page saying “Do you want to travel for free”. And I was like yes. And it was like “Raise some money” and I clicked on it and it lead me to another page, “memorable challenges”. It’s a Victorian based website and the lady that runs it is called Chris Harrison and she organises trips around the world for different charities like Stroke Foundation, SIDS for kids, the Clown Doctors and the people who want to go on the trips have to raise $5000 or over and then they get to go on the trip. And I was like “I have to do this, oh my god”. I thought it was an awesome opportunity and obviously I’d do the stroke foundation one because the brain haemorrhage I had has given me the on going effects of a stroke.

FACILITATOR: Do they call it a stroke for you?

EMMA: Everybody does, obviously not doctors, I think it’s just easier than me trying to explain: My vessels burst and things went wrong.   And people don’t really understand that or how that could happen so I say I had a stroke. So I contacted this website. All the trips were going to different places. The people that raised money for the Clown Doctors went to China so it was all different. And the Stroke Foundation was going to Nepal and I was like “I can do it and I just want to find out about it” and my Mum and Dad said “Ok”. And so I contacted this website, the lady and she said “You’ll be fine it’s not that hard doing this trek. I told her that I don’t really walk properly. She was like “you can stop and rest whenever you want and if you can’t go on, on a certain day you can stay at a rest stop overnight. I thought it didn’t sound too hard. I didn’t really know much about the country apart from the fact that Mount Everest was in it. Nepal isn’t really ever on travel shows or on the news. It’s just always India or Tibet. Nepal is pretty much ignored. I said to my dad “Yes I am doing this” so we started a plan for the fundraising and a friend of Dad’s is actually an event co-ordinator for charities and he does heaps of work for SIDS and we contacted him and he was like “yeah I’ll help you out”. So we decided on doing a silent auction. They are where people donate prizes and you put them on a table and the people that you invited to the charity night can go along and place a bid for this certain prize and underneath each prize there is a sheet and you put your name down and how much you want to bid.   We were pretty lucky with the prizes we had donated. All totally random things like passes to Dream World and the front bumper from one of Peter Brocks race cars. The whole night I was like, I just have to raise $5000 and I have to go. And maybe 100 people turned up and it was $20 per ticket.

FACILITATOR: So you only really had to get them to give you a little bit extra.

EMMA: Yeah, it was 80-100 people I can’t remember exactly. Dad’s friends with heaps of random people like every time we’d go somewhere dad’s like “oh that’s such and such” and I said “God I can’t go anywhere without you knowing someone”. For example when we were in Phuket for the second time we were at the hotel sitting down eating breakfast and he spotted someone across the room and he said “I know that guy”. Anyway getting back to the story he was speaking to this old friend telling him about this charity night and the guy who I’ve never met said “I’d probably have something to donate”. He rung dad back the next week and he said I’ve got this big thing do you want to come over and have a look and it was actually a massive framed photo of Elvis with underneath a cheque signed by Elvis from the early 60’s. This guy had bought it in Memphis when he was overseas years ago. He said to dad that Emma could have that. That went for $5000. 

FACILITATOR: On one item you got all your cash, so you had spending money and everything.

EMMA: The whole night I was just like “Oh my god!” All in all on that one night I raised $26,000. That pretty much all went to the stroke foundation. I took the flight money out and a bit of spending money, and my friend was going with me so we took that money out. But, all the rest went to the stroke foundation and we went to Nepal and it was really good but I am never going to do a trek ever again. It was probably the hardest thing that I’ve ever done.

FACILITATOR: Apart from the haemorrhage initially?

EMMA: In a different way. The physical side of completing something that I had chosen to do not that I had to do like the surgery. I had chosen to do this and it wasn’t as easy as the lady on the phone said. It was terrible, it was so hard. We were in Langtang Valley, very very high up. By the time we’d reached the top we were lacking oxygen.

FACILITATOR: That’s probably when you have to start putting the masks on.

EMMA: Yeah the air gets thinner, hence altitude sickness. On that last day when we were trying to reach the top I just couldn’t go on. My body was absolutely crying out. My knees, I’ve never had problems with my knees but then I’ve never done a trek before. People didn’t stay in a group like a line of people. Certain people could go ahead and other people were staying behind and that was me. I think there was 11 of us, they were all girls.   That last afternoon before we reached the top I just stood there and I was like “no, I can’t do this” and I had two Sherpas with me they carried all my stuff. We got to this spot with a few houses in this one area like farmers and I went up to this Nepalese guy and one of my Sherpas could speak quite good conversation English and I said “can you ask him if I can borrow his horse, I will pay him”. The Sherpa was like ‘uuuummm’. He said it to the farmer in Nepalese and the farmer was like “yeah’. I was like “thank god”. So I got on this horse and I haven’t ridden a horse in like 10 years and this farmer lead me the whole way. You know those suspension bridges like in Indiana Jones?

FACILITATOR: Yes.

EMMA: They were all along and I rode across one of those on a normal sized horse not a pony. I was like “oh my gosh I really hope this horse doesn’t freak out and plummet me off the edge”. I just stared straight ahead I didn’t even look over and I got to the other side of the bridge. The farmer lead me the whole way and as we were approaching the tea house everybody was up there already and they were like “what!”. And everybody came out. I said “Hi!” It was really fun. We stayed up there for two nights and all of us, even the able bodied ones were really hesitant to walk all the way back down. We wanted to get a helicopter to come and pick us up it was that hard and I was like “obviously we can’t do that so I went over to another farmer around the tea house. It wasn’t the same horse, I was really stupid and I payed him to take me on this horse and the group was all together at this point and I was like “thank god I’ve got a horse and everyone else has to walk”. We got to a really narrow part of the trak and it would have been like the length of this couch and over that edge it was just straight down and right down and straight into this raging river and because everyone was walking in front of me that was fine and I said “be careful I’m coming” as we approached, so one girl moved aside and in the process she moved a few rocks and the horse freaked out and we fell down a raven.   And in Nepal I don’t know why you actually get tied to the horses. I don’t know why they do that and all the horses have bells around there necks and pretty things and it sounds so unbelievable, you have to actually be there. Every time I tell this story people think I’m exaggerating but I’m not. I’ve got 11 witnesses so it wasn’t made up or anything. And my body just reacted and I just grabbed onto a big rock and the horse was behind me like down and I turned around and I could see the horse and the river. I wasn’t even thinking I’m in danger I was just thinking I don’t want to see a horse die. I don’t know why I was thinking that. I just didn’t realise. I was just thinking I really don’t want to see a horse drown because the horse was also stuck on a gravel part. We were lucky where we landed and the horse rolled over and all the Sherpas came down and cut the saddle thing that was attaching me to the horse. The horse managed to turn over and bolt. It just bolted somewhere up the hill and then they dragged me up the hill and I just sat down. Everybody was screaming or crying, they thought I was going to die. I think I was in shock. We should have taken a photo so I can show people the evidence. It’s really annoying. Mel my friend was there and she could verify. We moved on after an hour, I was like “it’s alright we’ll just keep moving”. Everyone was like “Emma just calm down and sit down you are going to have a rest”. I must have been really delirious or something.   We got to the next rest stop and I was like nope, my knees are about to give way and we’ve still got three days of walking down to do and I don’t think I can do it. I just couldn’t do it. Literally my legs were like jelly. I was in pain and all the other women were older than me and they were like “no, sorry Emma we are not allowing you to do this”. I said it’s either that or I stay here and sit down, you don’t understand I can’t move literally. They were like “We’ve got no responsibility if you have an accident”. I was like “yeah, so I did it”. The third horse was absolutely beautiful and it got me down fine and another girl took my lead and hired a horse too and it was the surroundings were stunning and going down this beautiful mountain and the trees and all the little streams and there was snow in certain spots and it was just beautiful and I absolutely loved being on the horse. I didn’t even remember about the accident like two hours before, I’m just looking ahead and getting home to Australia. I loved being on that horse and you could actually enjoy the scenery more and you didn’t have to look where you were walking and stop and be in pain, I was just sitting on top of this horse so it was great. We finally finished the trek and it was amazing, just very hard. 

I am so glad I did it. Experiencing and accomplishing that was unbelievable. we got back to Kathmandu and we stayed there for one night because on the way when we first got there we bypassed Kathmandu and we didn’t get to stop or see it or anything. That first night in Kathmandu we were allowed our own time to shop or whatever. I was in one of the main areas of Kathmandu, little streets full of intrigue, it’s like all bars and cafes and its where all the trekkers hang out from across the world, it’s overwhelming. I was in a convenience store and I was buying something and I turned around and this lady was standing there like this street person like a beggar. She had a little baby on her back and she was like “milk, milk”, can you buy milk for my baby. I’ve never encountered anything like this I thought Morocco was bad and it wasn’t compared to Nepal and I thought Thailand was bad but Nepal is really, really third world. There are lepers everywhere on the streets and a lot of people can’t handle it. I was like this is really bad and all these little kids started coming up to us. They had no shoes on and we were there in winter pretty much and everyone was saying don’t touch the kids they’ve got all diseases and I just wanted to hug them and buy them food. And they were like Emma don’t touch them and I was like “I feel so bad” I’m not going to get anything from touching their arm it’s not like I’m kissing them or anything. It was really hard not to be effected by it and when I got home the second day I started searching on the net for ages, it was so hard to find a charity that didn’t require you to have a medical degree or a teaching degree and I finally found a charity and I applied to go the next year in 2007 to work in an orphanage for two months and I did it the next January.

FACILITATOR: In Nepal?

EMMA: Yeah. That was also really, really challenging. The kids where absolutely beautiful but the guy who ran the orphanage was really, really dodgy so I was like hhmmm. You’d expect the people who run an orphanage that they must love children and must love looking after the kids. It’s not like that. He just came home and shut his door, he had him and his wife and his little boy slept in one room and they had pay TV in their room and a DVD player and the orphans, the 24 of them slept in one room. Three kids to a bed and one blanket and their pillows were their school bags. There was no window like there was a window frame but it had no glass in it. I don’t know how long it had been like that for but they all had runny noses and skin things on their faces from being malnourished I think, I don’t know. The whole time in the first week I said to this Mahkan guy “So when do the kids get meat? What is the deal with their diet?” He was like once a week and the whole time I was there the two months they had no meat. The two chefs would have a chicken running around the kitchen and I’d look at it from my room and be like “ok the kids must be getting meat tonight” and they’d cook it and chop the head off and cook it and this whole big plate of chicken would go straight into Mahkan’s room and the kids would see none of it. So every morning for breakfast and dinner they don’t have lunch. Do you know anything about their food?   

FACILITATOR: Not much.

EMMA: It’s pretty much the same as India, the dhal and rice and the little serving of vegetables on the side and the soup which is like watery lentil soup that you pour over the rice and they would have that breakfast and dinner every single day. My best friend came for a little bit and then she had to go back and start Uni. For the first week we lived on the dhal for breakfast and dinner and we were like no we really can’t do this and during the day when they were at school we went and stocked up on chocolate and all this stuff. We had so much stuff under our beds hidden in bags and we shut the door and scoffed chocolate. We just had to, going from our diet with breakfast, snacks all day, lunch, dinner, desert the way we eat here to two meals a day it was impossible and I have a really, really big appetite and so we just did that. We would also buy things for the kids but we didn’t want to give them heaps of chocolate and lollies because as soon as we left they obviously wouldn’t get that again so we bought that as a reward because we took so much stuff over like undies, socks, jumpers, toys, writing books, pencils, pens everything. So we’d set them an activity and if they completed it or whatever we would give them a chocolate and the kids were just beautiful and sweet and it was so good. Early on in my stay the kids were peaking into our room and I was putting moisturiser on my face and arms and they were like “can we see?”. I said “Yeah come in”. Some of them could speak English a little. They were wondering what I was doing and I explained it was moisturiser for my face and from that moment on for two months every night before they’d go to bed I’d have a long line at my door of kids waiting for me to give them mini facials. It was so cute, each kid would stand in front of me with their arms straight down and go like this and I’d get the moisturiser and go like this and do their temples like that and they just loved it. That was every night like a little routine it was just so special.

I had a few accidents there. There was no carpet there it was just big mats and so in the kids room they just had one giant piece of carpet that wasn’t attached to the ground obviously and one day Connie my best friend was sitting down with the kids doing something and I walked into the room and tripped on the corner of this mat thing and fell all the way into the side of a metal bunk bed. Pretty much my whole face went into it and they rolled me over and Connie started freaking out and the kids didn’t know what to do. I automatically felt the pain and I was like “ooohh” and I started bawling and Connie thought I’d knocked my teeth out and luckily I hadn’t. Mahkan said just take two Panadol and I still hadn’t seen a mirror and I was still lying on the ground and Connie actually got really angry, and she never gets angry or never says no, that’s the type of person she is. And she said to this guy very sternly “no, Emma is in need of medical attention ok”. So we went to the British embassy doctors thing in the city and I got checked out and there was nothing wrong with me. My lips were like that, they were out and so puffy and the first day one of my eyes was here and the other one was up there and it was just really gross. And my nose it looked like I’d been beaten. We checked into the Kathmandu guesthouse it’s like a famous hotel, it’s my favourite place in the world and it’s awesome. We checked in there and the whole time I had sunnies on and I was looking down because I was so embarrassed by this stage the staff there pretty much knew me because there was no running water at the orphanage at all apart from the one tap in the kitchen and there was obviously no showers and there was only a drop toilet outside so we’d check into this hotel once or twice a week during the day to have showers like $6 a day for this room. So I was totally embarrassed and we stayed there for the weekend and at that stage Connie was two weeks off going home and I really wanted to go home with her. I was like no, I’ve done my part it’s almost been a month and I can’t stay here on my own for another month and I spoke to mum and dad and I was like “I don’t think I can do it” and it was too hard to change all my flights and all that stuff and so Connie left two weeks later and it was really hard to stay but I did and the people at the Kathmandu Guest House became really good friends. They are just the most beautiful people you’ve ever met. The staff there were just great. 

After the whole Nepal thing I flew back to Bangkok airport and met my sister and we went to Europe for two months and I am so glad we did it before she had kids and all that stuff. She’s only 18 months older than me so we’ve always been really, really close. Our whole family is really close and we just had the best time. It was amazing and we went to London twice and France twice and Turkey, Hungary, Italy, Spain again for the second time for me. Croatia. I think that’s it. It was just great. That was 2007. 

FACILITATOR: When did you start taking photos?

EMMA: My first trip overseas the Morocco, Spain trip. And for my birthday from other people I got a digital camera. I had a really cute little Sony one, that was probably the best present I’d ever gotten apart from the trip and so up until then not many people bought digital cameras. At my 21st birthday I look back now and there was only 10 or maybe 15 photos taken because most people had film cameras. It wasn’t like I’ve got all these photos on my computer. At the moment on my computer I’ve got 8000 photos.

Last October I took mum and dad over to Nepal so three times in three years in a row. I’d been there twice before and told them all these stories and its hard to grasp anything if you weren’t there, you are only imagining it. I can kind of see it in my head even though I’ve never been there. So mum and dad just wanted to see where I’d lived for two months and meet the kids and everything so we went back for a week and a half and dad absolutely loved it and he’s making friends with Buddhist monks walking down the street. A shoe shine man who now dad is sponsoring his business because this shoe shine man just had a little kit he was carrying around the street. He didn’t have a proper set up and so dad sent him the money over there for that and he took dad out to his house which was a tent and his wife was 9 months pregnant and they already had a 2 year old and a one year old little girl and dad said it was just terrible, mum and I didn’t go. Mum found it a bit hard to deal with at first because of the poverty but towards the end she loved it. We stayed at the same place and it was so lovely because all the staff remembered me. It’s such a nice feeling and that first day we got there we unpacked all our stuff and we went out on the street and mum and dad were quite scared because it’s like being at the Ekka all along the streets there because it’s full on and can you believe a few of the beggars actually came up to me and they were like “miss, how is your leg?”. They remembered me. Beggars. It was so strange and mum and dad were like “oh my god, all these people remembered you”. At the end our of stay they gave us all a good luck scarf. It was just a beautiful trip. On the way home we went to Singapore, have you been there?

FACILITATOR: Yeah, I’ve been to Singapore.

EMMA: What did you think of it?

FACILITATOR: Hot.

EMMA: Yeah boiling and I didn’t really like it. It’s so commercialised and there are 14 major shopping centres in the space of Brisbane City and I just didn’t like it at all and I thought there was no culture here, well I didn’t find any. I was really disappointed but at least I’ve been there so I know never to go there again. So I don’t think I’ve really left too much out. In 2007 I got nominated for the Australia Award. Someone from the Stroke Foundation nominated me and also in 2007 I did a speech at All Hallows the girls school in the city. And all the girls came in and the principal rung me after seeing the article in the Courier Mail so I had to go and do a talk to a massive group of young judgemental girls, very scary! In front of all the girls in grade 8 and 9 it was scary like 250 of them.

FACILITATOR: Were you expecting them to judge your disability or you in general?

EMMA: Me in general. They wear very fashionable clothes and I know what they are like. I’ve got some friends who went to those schools so I was thinking they are not going to listen to my speech and they are just going to be staring at me like “oh my god she’s wearing blah blah blah”. It sounds stupid but when you’re up there with all eyes on you, you think of all the things that can go wrong. And within the first paragraph of my speech I came across…..I can’t remember what word it was….. I couldn’t say it, it was just some basic word that I stumble over. I was just like calm down and “sorry everybody I can’t say this word I’m just going to warn you I might stumble slightly throughout this speech” and they were like that’s ok and laughed. After that it was fine. It was good doing that.

This year we are going back overseas to Vanuatu for my sisters wedding and I think that’s the plan for the moment.  

FACILITATOR: You are not letting anything stop you except for wearing short skirts. 

EMMA: People always said to me “Emma just don’t worry about it” but it’s different for everybody.

FACILITATOR: It does hold you back in some ways. Are there some things that you want to be doing that you can’t because of your leg.

EMMA: In what way?

FACILITATOR: Other than not wearing short shirts in summer and being self conscious of the brace is there anything else that you think you don’t do.

EMMA: Because I limp sometimes when I’m in front of people I tend to feel uncomfortable. It still hasn’t left, the feeling of being conscious of literally every step you take in public.

FACILITATOR: It’s your leg that you are thinking of you are paralysed right down that side and you are thinking about how you walk but not necessarily what else they will see.

EMMA: I can hide that because I can always walk like this. So many people that don’t know me have actually said “it’s really rude to speak to a group of people with your arms crossed. And I say “sorry but that’s how I stand.

FACILITATOR: Some people you just don’t tell them and try to hide it.

EMMA: Yeah, it’s quite fine actually. You don’t understand how rude people are, so many people in public that I don’t know have said to me “so what is wrong with your foot”. I’ve been turned away from three night clubs because they think I’m totally drunk when I’ve had one drink because I walk funny and that is the most humiliating thing. A whole crowd of people waiting to get into a night club and being turned away and I’m not even drunk or slightly tipsy or anything. 

FACILITATOR: So you do make a conscious effort to hide it. 

EMMA: Yeah, pretty much. But when old people ask me what happened to your leg in shops like shop keepers, I would never do that like ask. I don’t understand people. I’ve made up so many stories it’s so fun and to some people I say I was skiing Aspen last month with my family we go there quite often and I broke my ankle. Other people I say last year I was modelling in Mercedes Benz fashion week in Melbourne and I had a tumble off the cat walk and I broke my ankle. They say “oh really, how embarrassing” and I’m like “yeah it was”. So every time someone asks me I just make up different stories. Why should I tell some random stranger my personal history. I would never ask a personal question like that unless the person volunteered to tell me so I think I’m going to lie well not lie but make up like it’s my ankle I know I’ll just deviate from the truth a bit.

FACILITATOR: You don’t what them to feel sorry for you but at the same time you don’t really want them gushing and saying how wonderful and extraordinary you are for walking so far.

EMMA: Exactly, the worst thing is pity, it’s the worst thing so I don’t want that and I’ve never wanted that I don’t know who would. I make a joke out of that and amuse myself around other people. When my friends are with me they laugh and then we walk off and they are all laughing at the stupid rude person. I still can’t believe that bouncers at night clubs can actually say that. I’ve actually pulled out my pension card, it’s gone that far and bouncers have yelled at me and they won’t hear about it and they don’t care. It’s really quite shocking.  

FACILITATOR: Do you get the same sort of effect at Uni?

EMMA: No, people don’t really care they just want to go there do what they are there to do.

FACILITATOR: So you were telling me before because you can’t use your right arm you’ve had to learn to write with your left and taking lecture notes isn’t an option at the moment. 

EMMA: Exactly. 

FACILITATOR: So there are some limitations.

EMMA: Yeah definitely. So the lecture notes are being provided for me and some of the exams maybe have extra time like an extra 10 or 15 minutes extra if I need it because it’s not just the physical stuff you can see but I get headaches everyday from my shoulder, I’ve got really bad shoulder drop even before I broke my shoulder so that pulls down on my neck and I get a headache. And when I’m tired my brain just totally blanks out so if I’m in an exam just staring at the words.

FACILITATOR: Is it like an absence seizure?

EMMA: No, it’s just that I’m really tired and I can’t think of anything legible to say. I have to take medication morning and night for the seizures. And it’s really strong stuff and it effects my level of alertness.

FACILITATOR: So it makes you more tired. Does it have an effect on the blanking out think where you can’t think of things?

EMMA: No I think that’s the tiredness. When I’m excessively tired my words start slurring and I can’t say certain words and I’ll me like “ahh”. I get so frustrated because I had to learn how to talk again.

FACILITATOR: Is it still a conscious thing for you? 

EMMA: No. It’s automatic. The spelling, I’ve always been an excellent speller and now I have to ask mum how to spell a word and that is frustrating but, with the whole spell check think it’s lucky. I don’t think there are many limitations well I was really worried about holding a new baby. I was really anxious about that and kind of depressed and I was thinking I won’t be pick the baby up etc but it was just natural when I held my little nephew. 

FACILITATOR: Does it give you hope that maybe you can have your own children one day? 

EMMA: Yeah definitely.

FACILITATOR: Did you think you could before you held him?

EMMA: I’ve spoken about it to everybody like my family “do you think I’ll be able to pick the baby up from the car?” just all different scenarios. Mum has always said “you will find a way there are so many mothers with disabilities out there and they all find a different way of doing what they need to do for their baby”.

FACILITATOR: You are pretty hopeful for the future you are not really concerned that you are not going to have the same experience as everyone else your age will, that’s fantastic. You just need to educate the bouncers.

EMMA: They are bad enough already, egotistical bullies thinking they can do anything. So going back to the careers I would absolutely love to do photography and I know that is an impossible market to break into. There are so many great photographers out there and the graphic design is so exciting but that’s also another thing that is really hard to break into and I’ve got my own little business and it’s called Frankie and Rabbit.   I’ve got a business card and I’ve actually designed a range of car stickers with Frankie, she’s a little cartoon girl and she is kind of meant to be me and I used to have a pet rabbit.   When I made up this cartoon strip I had my rabbit so it was Frankie and Rabbit and the car stickers are those too. They are being sold in Auto barns and hopefully you might see. They only started stocking them in January but I haven’t gone in and said ‘how many stickers are you selling’ because I don’t want to know. I don’t want to go in there and have them tell me “yeah we haven’t sold any yet” so I am leaving it up to them and the good thing is that they paid me up front for them. I thought they would probably do them on consignment but they bought them up front. I’m doing psychology because I’ve always been so fascinated by it, but now it’s really important because you need a back up stable job if you hope to pursue anything within arts in the future. 

FACILITATOR: So the photography and graphic design would be a hobby but a hobby with perks. 

EMMA: Yeah. 

FACILITATOR: What kind of  psychology do you want to do?

EMMA: I’m not sure yet. Not child psychology, I don’t think I could deal with that.

FACILITATOR: This is a really dodgy question but would you every consider counselling?

EMMA: People have asked me that but I don’t think I could put myself back in that environment; it just brings back too many memories. Especially being in a hospital environment. If I was to work in a hospital I’d probably dread going to work every day and I just don’t want to be like that so I’m not sure.

FACILITATOR: You started this year didn’t you?

EMMA: Yes

FACILITATOR: Tell me more about your family.

EMMA: I’ve got an older sister and a younger brother who has just turned 21 and my parents are I guess are young. They are both 48 so I don’t know if that’s young but when I was growing up all my friends parents were much older and they’ve always been young acting parents. They’ve always been friends with my friends and we all socialise together. It’s never been a situation where I’ve had to ask mum and dad if a certain person or certain friends could come over on the weekend, they’ve just always been like “yeah, yeah just bring them over”. If I didn’t have my family and a few close friends when I was sick there is no way I would have been able to get through it. Definitely not because they were their everyday and mum drove up to the hospital everyday to shower me in the morning because it was disgusting there in rehab. A male nurse who was 50 used to shower me.

FACILITATOR: You were 19.

EMMA: Yeah and I was still in the wheelchair. 

FACILITATOR: Were you aware of it?

EMMA: Oh yeah. 

FACILITATOR: You couldn’t speak?

EMMA: Little words. I couldn’t say “no sorry I don’t want you to shower me”. I could only say “ hhhhmmm no” I just really didn’t feel comfortable at all and it was like One Flew Over the Cuckoos nest. 

FACILITATOR: You must have been beside yourself.

EMMA: Yeah, it sounds really harsh but it felt like I was the only ‘normal’ person in there.

FACILITATOR: They all had brain injuries of some sort?

EMMA: Yes, some were very major. There was a girl who had a car accident when she was drunk with all her friends and she’d run away from the scene of the accident. I can’t exactly remember the story so she was in trouble with the law as well as being physically unwell, and she was in my room. There was six people to a room and I just hated it and I’d cry every day and I was severely depressed and in the mornings some of the nurses would leave me in bed and everyone else would be in the common room having breakfast. They would just leave me there so I’d be buzzing because I wanted to come. I was in the wheelchair so I couldn’t get out of bed and wheel myself out and it was lucky because I had my phone with me the whole time so I’d ring mum or dad. I just couldn’t really talk and they’d bring me up Macdonald’s for breakfast or whatever I needed. Mum and dad had so many arguments with the staff their because of the treatment was so bad. It was the best thing they could have done transferring me to the private rehab unit. So my family is really close.

FACILITATOR: It sounds like you are pretty grateful.

EMMA: Yeah, if I need anything or need to talk to anyone they are always there. They will come in a second and take me wherever I need to go. We’ve tried everything. We’ve gone to so many doctors and naturopaths and everything that’s available we’ve tried and I fully realise not everyone in my situation has the ability to do that so I am lucky in that respect.

FACILITATOR: So you feel lucky?

EMMA: Definitely…and with the monetary side of it, even going to the physio it’s hard. Going to the specialist or going anywhere all the costs add up, so I know not everybody is as fortunate as me in that situation. I do realise and don’t take it for granted at all. I’ve lost a few friends during the process of me recovering. Lost as in they’ve ended our friendship which has been really, really hard.   There are people who can’t deal with it. I lost my best friend who I’d been friends with her all through high school. We were kind of like sisters, she would sleep at our house every night and we’d worked together and we went to Uni together, everything. We were inseparable. Our boyfriends were best friends. As soon as I got sick she didn’t know how to deal with it and she rarely visited me in hospital and we just ended the friendship.. Four years on and I’m still fining that harder to deal with over physical limitations! I think its so hard for me to comprehend because I would never do that to someone else.

FACILITATOR: Do you want to tell me what happened with your boyfriend?

EMMA: At first I didn’t realise I thought we were just friends, it wasn’t coming back to me. He was there every day and he was actually living with us. I was living with my parents when it happened and I had never moved out before and he’d been living with us for 1 month because he was an international student. He is half Indian and half Iranian and he was over here studying and his lease ran up on his place and I said “why don’t you just move in with us for the time being” and we were planning on going to India that January to visit all his family and just for him to take me there and I just wanted to go there so much. He was quite close to my family obviously and I just thought ‘why is he here all the time’ and I didn’t really comprehend and then it started to come back and I realised that we were going out at as boyfriend and girlfriend but I didn’t realise how involved in our family he was. It’s just one of those strange things. 

FACILITATOR: You just didn’t know who he was really.

EMMA: No, I knew his face and name but I was just like “why are you here every day?” I had to break up with him because he was at the hospital all the time. When I could talk I said to my family “I don’t want him here all the time” and every time he’d try to do something nice and I’d push him away. It was really hurtful but I couldn’t really control my feelings. I don’t know what came over me but I only wanted to be with my family that was it. His family is quite wealthy and he’s had a sheltered childhood, and he didn’t really understand. He just always thought that Emma is going to get back the way she was. He never doubted that I’d return to normal and mum and dad tried to explain to him and he was really serious and I think that kind of annoyed me. So when I was still in hospital I asked my sister to break up with him for me and he was like “no”. He came up to the hospital two days later and he was like I think you are just not thinking straight and I was like ‘I don’t know”. We had a cat together not Jiffy but another cat and so finally he got the hint and so when I got out of hospital he came over and he was so sweet and any other person would have been like “fine, obviously you totally don’t want me to come around” he still came around just to check up on me. So I’m still friends with him but he’s married now. He had to have an arranged marriage late last year and we were still friends, quite good friends and one night he came over to my place in the valley and I new that he’d just been on a trip back to see his family. And I said how was it and he was like good, mum and dad want me to get married to this girl and I said “congratulations and who is she”. “ It’s this girl that I was introduced to.” He was so casual about the whole thing but I understand that he grew up with that stuff and it was the norm but the whole time we were going out before I got sick his parents knew about him. His family was Muslim and at first he was hesitant to tell them about me and then he did and his dad came over for a visit and I met him and he was fine so they knew about me and his only son. He was expected to marry someone in their class level but he said to his parents “I’m marring who I want to marry” and he is 5 years older than me and then his parents had accepted it and everything and when we broke up I think they pretty much said “well if you haven’t found a girl over there who you want to marry you’ve got so much amount of time left and then we’ll find someone for you”. 

FACILITATOR: Are you still friends?

EMMA: Yeah. I guess it’s kind of worked out good in a way that we’ve managed to be mature about it and still stay friends. It was really, really hard. I think he still doesn’t really understand why I broke up with him. I have tried to explain it so many times I said “I wasn’t myself and I was really sick” it’s hard for anyone but I just wanted my family with me. But that’s fine, I don’t expect anyone to really comprehend the magnitude of the situation, it was hard enough for us!