I don’t know if I’ve really got the words to adequately convey how moving I found Helen’s story. What she’s been through and still experiencing is enough to send anyone crashing to the mat but you’ll see it hasn’t defeated her, it’s made her stronger – with the help of mindfulness, meditation and a massive dose of love.
Now this is very long despite some nifty editing! Stick at it because just when you think it’s just about one thing, it becomes about something else and then something else again. It’s a compelling story. Thanks for sharing Helen. xoxo
I was born in Newcastle Under Lyme. Both my parents were teachers and my grandfather was a headmaster so it was a very academic family. There was a lot of emphasis on us having a good education and being well educated. When I was about 5 or 6 we moved down to South Staffordshire and that’s essentially where I grew up. I’ve got an older brother and a much younger sister; she’s 10 years younger than me. While I was growing up we would often have underprivileged kids come to stay during the holidays. My mum worked pretty much all the time. Before we moved, we lived around the corner from my grandmother who essentially brought me up when I was small because my mum was working.
I was 14 and a half when I met Andrew. We met at school; we’re childhood sweethearts. Well you don’t think that the guy you start going out with at 14 and a half is going to be the one that you end up being married to and having 3 kids with. It caused a big scandal at school. We were in Joseph and his Amazing Technicolour Dreamcoat and I was in the cast. He was in stage crew and that’s how we got together.
I didn’t even know who he was until he was pointed out to me. But he’d noticed me and also I didn’t know what his name was because everybody at school called him Bernie. On our second date he said to me “I’d really rather you call me by my proper name” and I said “you want to be called Bernard?!” He said “no my name’s Andrew”. And I go “what?! Why are you called Andrew?” Oh god I’ll never forget that. My brother still calls him Bern or Bernie. I call him Andrew because that’s how he called himself. His family call him Andrew but nobody else does. Everybody calls him Andy.
When my girls reached 14, I stopped to think about it and thought what the hell were my parents thinking? There I was 14 and a half years old suddenly going out with a 17 year old who, not long after we started seeing each other, turned 18 so could legally go in pubs. So where’d they think I was going, I was going in pubs with him. When my girls got to that age, I thought would I let my girls go out if they rocked up now with a boy who was three and a half years older and had a car and was nearly at legal drinking age? Of course I wouldn’t let them go out with him.
I did what was expected of me. I became a lawyer. There was no real discussion with anyone about it, no careers teacher to tell me that wasn’t what I should be doing and I guess with the innocence of youth I thought “oh well okay I can change the world if I do this, I’ll save all these innocent people and so on”. So it’s probably not such a bad thing. But in reality looking back it wasn’t the right career for me. If I had my time again I’d do psychology. I’m far more interested in people and the way people’s minds work. I might have even gone into psychiatry. I think now I know who I am but you don’t when you’re young.
The first week I was at Law School, I received a phone call from my Dad. I was totally shocked to be told by him that my Mum had been diagnosed with ovarian cancer. Even now ovarian cancer does not have a very good survival rate and back then living 5 years beyond diagnosis was pretty difficult. But we were lucky and after surgery, chemo and radiation therapy she went into remission.
I’d started my articles when Andrew sprung a surprise on me in March 1989. He’d managed to pack a bag, my passport and everything without me knowing and took me to Paris for the weekend. He proposed to me in Notre Dame Cathedral. He knew it wasn’t a good idea to propose at the top of the Eiffel Tower because I don’t like heights. We came back and it was very exciting planning and booking everything for the September the following year by which time I would have finished my articles, but then mum’s health deteriorated quite significantly. It was exactly a year to the time that we were supposed to get married when my dad rang and said “your mum’s been given a year to live, what do you want to do about the wedding?” We had no idea what to do about the wedding. So in the end we said to mum “you’re going to have to make the call” and she said “I’d rather you moved it forward”. We ended up rebooking everything for a public holiday in May but unfortunately mum died three months before we got married. Three months after her death we exchanged our wedding vows in the same place her coffin had been.
Everybody pulled out every stop to make that wedding. The church was packed to the gunnels. It was a beautiful day. At the reception my dad got up to make a speech; he started and he suddenly said “I can’t say anymore” and sat down and I don’t think there was a dry eye in the house. I’d just turned 24. It’d taken 9 years, 6 months and 1 day since Andrew had asked me out to get to the alter.
So within the space of 6 months I lost my mum, got married, bought a flat and qualified as a lawyer. No wonder I was a bit stressed. I had Charlotte in 1995 and after maternity leave went back to work eventually full time. I had Rebecca in 1997 and Joshua in 2003. I didn’t go back to work after Becca because they changed my job while I was on maternity leave so I gave up work completely. I took them to court over it and we settled. So I was then at home; I liked being around the children, I wanted to bring my children up.
It was while I was pregnant with Josh that we started to seriously look at coming out to Australia. Andrew flew out to Australia a few times, the last time being when I was heavily pregnant with Josh. I remember saying to him “please don’t ring me from Australia and say guess what, we’re coming to live in Australia, I just don’t think I can cope with that now” But of course that’s exactly what he did. He rang from Sydney Harbour and went “guess where I am?” I replied “where? It’s sheeting down with rain here, I’ve got to get the girls off to school and I’m really tired.” He simply replied “I’m on a Sydney Harbour ferry and it’s glorious here, how do you fancy coming to live in Australia?” Living by our mantra of not regretting missing an opportunity to do something, we decided to go.
We came out here knowing no-one. We organised everything from the UK. So with a baby, two little kids and no help from any outside organisations. Andrew was coming out here quite regularly so at the weekends he would scout areas and he came home and said “if we’re going to do it, it’s got to be as good as what we’ve got here. The only way I can see that is that we live by the beach”. So we put a pin in the map from Brighton down to Black Rock and I would go on Domain every day and I would just watch the houses coming up for rent and I saw one in Hampton in Amiens Street that had enough number of bedrooms and a pool. We put a stupid offer in, they accepted it and so we moved into 18 Amiens Street having never seen it. We bought a car online. We wanted it all in place so that we could tell the children exactly what was happening so that it wasn’t unknown to them. We registered the girls at Hampton Primary School.
We left England on New Year’s Eve and we arrived on the 2nd of January 2004. I remember standing in the room in the hotel room with the baby asleep in a travel cot and the two girls who were only 6 and 8, looking around the room and thinking “wow, this is it. I know nobody to call. All the people in Australia I know are currently in this room” That was quite a seminal moment of wow we’ve really gone and done it this time haven’t we. A week later we moved into Amiens Street and it was just right from the start. In 2009 we became Australians.
I’d rung the Australian Law Society and they told me I needed to redo some of my articles and re-take some exams. I swore very loudly when I came off the phone and thought “if you think I’m doing that you must be joking”. I found myself working for a not-for-profit organisation, doing admin.
But all this changed on the 2nd of March 2012. That was the day when my life took a completely different turn. I was just in the wrong place at the wrong time. I met up with a friend to take the dogs for a walk at Sillitoe and it’s just fate isn’t it. I just happened to be there at that moment when a dog walker let 5 dogs out of a van. The dogs careered towards our dogs and I ended up being hit in the knee which tore my medial lateral ligament and tore the meniscal disc in my knee. After two weeks I had to have surgery on it. I remember the surgeon saying to me “when we fix the meniscal disc your knee will be able to bend again”. But when I came out of surgery my knee still wouldn’t bend.
Thank god I saw this particular orthopaedic surgeon. When I went back for my post op appointment he took one look at me and he went “oh that’s not good is it”. And it just wasn’t budging, it wasn’t moving at all. I just said some throwaway comment like “god I hope this isn’t going to be like my shoulder”. He went “oh what’s wrong with your shoulder?” I told him about a car crash in 2001 where I’d partially dislocated my shoulder, since then I get an immense amount of pain; I can’t move it beyond certain positions.
So I explained to the doctor all this about my shoulder and he just looked at me and he went “I think I know what’s wrong with you but it’s not my field of expertise so I’m not going to confirm the diagnosis but I want you to go and see the specialist”. It didn’t take me long to get an appointment to see this pain specialist where he diagnosed it almost straight away, he said “you’ve got Complex Regional Pain Syndrome, CRPS”. CRPS is a rare, degenerative, chronic pain disorder that usually affects the limbs although any part of the body or even the whole body can be involved. No-one knows why someone should develop CRPS – anyone can get it at any age although it is more common in women than in men.
It’s triggered by trauma generally and it can be triggered by the most insignificant of traumas. Knocking into a bench or a table or even a paper cut can be enough for me to have a week’s worth of pain. And that’s basically one of the major features of it, is that you have an injury that would normally fix but the best way to describe it is your body switches on like it should do to help you get better but I have no off switch. So it just keeps firing these messages saying you’re still broken, we still need to fix it, still sending pain signals. My knee is perfectly okay, if you scanned my knee there would be nothing wrong with it because it’s a malfunctioning of my nervous system.
The limbic system in my brain is damaged. This controls things such as your ability to regulate heat, affects short term memory, affects concentration, you can’t always get the words out that you mean. It affects a lot more than your body, it affects how your mind works as well. I know when it’s happening and it gets really distressing because I can tell it’s happening. And it happens most when I’m under stress or I’m really tired. My concentration is just a joke. I suffer from insomnia and fatigue, dystonia (uncontrolled movement of the limbs and body – a bit like epilepsy) and have developed an essential tremor. And of course I am still partly paralysed. I still can’t bend my knee or use my shoulder properly. Previous accidents such as when I fractured the base of my spine after a fall in the early 1990s have left their mark too. I have limited movement in my lower back and have back problems but of course at that time we didn’t know I had CRPS – I just had a back injury that never seemed to heal properly and left the doctors scratching their heads.
When I came home and read all about it, I thought “oh bloody hell this doesn’t sound good” and they can’t fix it. It can sometimes resolve itself but it will take years to do that but in most cases it’s degenerative and you’ve got it for life. Imagine living with pain every day of your life. You do adjust to it to an extent but there are flare ups. And as the day goes on inevitably the pain gets worse until by bedtime it can be so bad that I can’t even bare for shower water to touch me.
Despite all of this, having a diagnosis was a godsend. I had spent from 2008, when a particularly bad flare up in my shoulder finally sent me back to the doctors, to 2010 trying to get someone to tell me why I had so much pain in my shoulder and why it wouldn’t work properly. But no one could and I was passed from one specialist to another. I would cry out of sheer frustration but Andrew never wavered in his belief in me that there was something wrong. He was, and always will be, my rock. Pain is weird because you can’t see it, it doesn’t show up on scans etc, but you can most certainly feel it. In 2010 I even underwent a procedure under anaesthetic in which my then specialist tried to move my arm. Eventually after many attempts he and his assistant achieved their aim. I shall never forget waking up to the specialist saying to me “so it is really real then”. What hope do you have of being cured if even those treating you don’t believe you? The aftermath of this procedure was so dreadful – I had never been so physically sick in my life and it took months to recover. If they had known I had CRPS all these treatments would not have been done – they were only making me worse not better. At that point I decided just to put up with my bad shoulder.
After my knee surgery, I went to Hopetoun rehab centre where most people go to recover from knee and hip replacements. So there they all are 30 years older than me and I’m sitting in the gym on the first day thinking “how the hell did I end up here?” All these people are getting better and I’m not and I’m thinking “what the hell is going on?” That first afternoon I had aqua therapy. I went in the pool but I overdid it then realised I couldn’t get up the steps to get out so they had to put me on a hoist to get me out. They put me in a wheelchair to take me back to my room. I got in the shower and turned the shower on really loud and I cried and cried and cried like the world had come to the end. I could not get my head around what was happening. To me the world had ended. I just didn’t do this. I was never sick and I’d been diagnosed with this condition that no one really knew about and didn’t really know how to fix.
They then tried me on a drug called Lyrica and I couldn’t take it because I was allergic to it. They started me at a really low dose but even at 25mg I was off my face. And after 10 days I just said “please stop, I can’t do this anymore”. My head was a mess, my body was a mess and then I came out and found that they wouldn’t even take me back at work. So then I was fighting them as well. And it just felt like the world was caving in on me. Which is why Hopetoun put me in touch with a psychologist who does Mindfulness Integrated Cognitive Behavioural Therapy. So I started working with a psychologist doing MICBT and that’s what got me through and changed my outlook on life completely and is taking me down some roads that I thought I would never embrace. I was such a black and white lawyer, things are facts. And all of a sudden I was dealing with the fact that it actually could be my mind that needed to change to help my body heal. Not that it was a psychosomatic illness but because it had affected my mind in that it was making me depressed, it was making me really angry and I needed to change those mindsets so that my body could be in a state that it could heal.
It was very hard to learn to meditate. It was very hard to be able to do all of that and with the MICBT you envisage in your body what you’re feeling and you try and give it a voice I guess. So she would say to me “how does it feel?” And I’d say “it’s heavy, it’s black, it feels like I’ve got this lump sitting in my stomach, this big black brick sitting on my stomach”. And then one morning I was meditating and I saw myself vomiting all this black stuff out and when I finished meditating it was like wow, I get it. And I walked into my psychologist’s office that week and she said “what’s happened to you” and I said “it’s okay, I’m okay. I’ve got it”. Everything was clicking into place. It was just the weirdest thing. I’d been beating myself up about this. It was this ability to see alternatives, to not see your life in that black and white rigidity. To be able to open yourself up to things, just to allow the universe to talk to you and take notice of the universe. And I have to work at it because I do still find that I can get out of that space. I don’t walk around being all very zen because you can’t be.
And then in October 2012, five months after the accident, I was diagnosed with breast cancer. I knew as soon as the nurse came in with me and sat right beside me that the doctor didn’t even need to open his mouth to tell me that I had cancer. And he went “what’s wrong with your leg?” And I explained to him and he went “hmmm well I’m sorry your troubles aren’t over” were the words he used. He explained to me that I had a 5cm tumour that needed to be removed and I had full blown breast cancer. They then took me into a little room with a telephone and a box of tissues and asked me if I wanted to call my husband.
I remember ringing him and telling him and just not knowing what I wanted to do. I just wanted him to be there with me. He was like “shall I come, what do you want me to do”. I was “I don’t know, I can’t compute this at the moment”.
I remember I had to walk from Breastscreen Victoria out of the hospital, I thought “I have to get out of here without anyone seeing me crying”. I wanted to get back to the car before I let go again. That was one of the hardest walks I’ve ever done in my life. At that moment it was just so overwhelming that I just didn’t know what was going on in my head and I just needed to be with people I knew. It’s also a very hard thing to tell everyone that you’ve got cancer because of people’s reactions to it. A lot of things were going through my mind because Joshua’s exactly the same age as my sister was when my mum was diagnosed with cancer and he needs a mum so how did my sister cope because she needed a mum? Things like that were going through my mind.
Because of the nature of the tumour they had to put guide needles in before surgery to have the tumour removed. I had to go to Clayton to get those done even though the surgery was done at Brighton Cabrini. They put these guide needles in under a mammogram and of course the CRPS kicked in just like that and I was in agony. So there I was strapped to this mammogram machine with these two needles sticking out of my left breast. I couldn’t move off the mammogram machine because I was in so much pain and the poor guy who was doing it was going “I don’t know what to do, I’ve never had this before” and in the end he injected local anaesthetic down the guide wires and see if they could kill the pain that way and it worked, thank god.
I had the surgery on the Friday. Got the results on the Monday and they said they thought they got the whole tumour and even though the margins were very, very narrow they were happy to not go back in again and they’d start radiology. However because I can’t move my arm above my head they refused to treat me because all they’d be doing is radiating my arm.
So in the December I went in and had a bilateral mastectomy to stop the risk of it spreading and at the same time they began the process of reconstruction. As a mastectomy can’t remove all breast tissue I still have to get regular checks and I’m on hormonal drugs for a ten year period.
The CRPS meant that the pain from the surgery was just uncontrollable and eventually they gave me a special sort of epidural and that was just wonderful. I said “can I keep having these?” and they said “no you can only have this one” because they couldn’t think what else to do – I was in so much pain. I can’t even describe to you the pain I was in. They rate pain where it fits on this McGill Pain Scale and labour’s pretty high up there but the pain from CRPS is the highest and that’s what I was experiencing at the time. The whole thing was a nightmare and eventually after a week in Brighton Cabrini, they moved me back to Hopetoun rehabilitation where I’d been before because I wasn’t well enough to come home. So normally you’re meant to be in hospital for four days after a double mastectomy. I think I did 25.
As a result of all of that my pain specialist wanted me to have ketamine therapy, it’s infused all the time but gradually the amount of it was increased. The idea of it is it can reboot your nervous system and it can help considerably with the pain from CRPS. I was in so much pain at the time I thought “let’s try it”. So I had to go into Cabrini again and have a catheter stuck in my chest. That was done on New Year’s Eve then on January 2nd I went in and they started the ketamine infusion. Within hours I couldn’t stand up; I was like a drunk and my blood pressure was going all over the shop and my heart rate was dropping way too low, it was going about 40 beats a minute and the whole thing was a complete nightmare because my body really wasn’t happy. I was hallucinating, I was convinced the aliens were coming to get me, it was just awful though there were some good bits – I did sing songs from the Sound of Music. So after 8 days they stopped and that hadn’t altered a thing. By this time I had tissue expanders in my chest because you’ve got to grow skin back so they can put a prosthesis in so gradually the skin grows over them until they reach the right size. The plastic surgeon was very wary about putting anything in because I was still in so much pain and in the end he said “do you know the only thing we can do is knock you out and put it all in in one go rather than doing it gradually and we’ll just hype you up on so much pain medication that you’ll get through it”.
In all of this I also had a radical hysterectomy so they took everything; they took ovaries, fallopian tube, uterus, cervix because my cancer is oestrogen positive so they wanted to get anywhere oestrogen coming in to my body out. I went and saw this fantastic surgeon and he had to get a team together because he believed he could do it laparoscopically, he’s the only person in Melbourne who could do it laparoscopically and I went back and had that done – it was June 2013 and then I had another ketamine infusion after that. So my recovery from that was much better. They kept the ketamine at a low dose so that I wouldn’t get to the hallucination phase.
Unfortunately the CRPS had spread into my chest and we went straight back to see the plastic surgeon and he said “right we’ll take you into hospital, we’ll take the chest expanders out and if necessary we’ll flatten everything down it’s not worth this amount of pain but it might be your skin’s soft enough, I might be able to get implants in”. So I went in, had the surgery done and apparently when he opened me up, what I’d done, unbeknownst to me, because I was on so much pain medication and walking on two crutches, I’d actually managed to tear all my muscles under my arms and that was the pain but it had been masked by all the pain medication I was on. He put soft prosthesis in but they didn’t take properly so I had to have it repeated. I just thought “this can’t be happening to me? Why have I got to go in and have another surgery, should have been one and done”.
That was the end of the line with that pain specialist, he couldn’t do anything else for me apart from just keep me on drugs of which I am on a lot of drugs, I’m on morphine 24/7 now at varying doses depending on where I am and I think I take 10 medications a day. The medications themselves cause side effects so it’s always a case of treading a fine line between getting the right amount of pain relief without giving me too much that the side effects will stop me functioning.
They sent me to see a different pain specialist who does slightly different things and he’s just fantastic. He said “the best thing I can suggest is we put a spinal cord stimulator in”. In my jeans pocket area there’s a little unit and there’s wires that go all the way up my spine to about C5 and there’s electronic pulses to try and interfere with the pain pathways but unfortunately the wires broke and the unit malfunctioned.
That was around about the time when I started to think that Becca had an eating disorder. You get a feeling that something’s not quite right. It’s just odd things she would say to me. I was watching her and thinking “you’re doing a bit more exercise than possibly you need to”. She’d always been very active; in particular she was a dancer. She stopped dancing because she was in Year 11. She was doing the IB (International Baccalaureate) and didn’t have time to dance. Now she started running a lot. And then she started saying things to me in the kitchen like “I don’t think we need that in there” if I was putting, say, cream in something. Just little things.
My worries were confirmed when we went to buy her formal dress. The year before she’d been a lovely size 8 with a beautiful figure. This year we were struggling to get her to fit a size 6. It was awful to see her because up until then she had been covering her body all the time. You could really see how thin she was when she was then coming out in these dresses.
Eventually Becca saw her GP. The doctor took her obs, weighed her and said “I think you’ve got EDNOS” which is an eating disorder not otherwise specified. That meant that she didn’t meet the criteria for bulimia or anorexia. But EDNOS is like a catch-all.
We went back the following week and she’d lost another 4 kilos. It was almost as if once it had been acknowledged, it was out in the open so she didn’t have to eat. Her body was now starting to be compromised and she was constantly cold and wrapped up even though it was February. She was coming home from school absolutely exhausted and lying on the couch and sleeping. Then Andrew went to see his doctor about four days later and mentioned something about Becca. His doctor looked at Becca’s details and he told Andrew the situation was very serious. Becca needed to be in hospital because she was in danger of dropping down dead at any moment with a heart attack.
And so we began the merry go round known as ward 42North at Monash Hospital. The theory was that the children needed to have their weight increased as quickly as was safe to do. This usually took about two weeks. It was awful as the children were virtually force fed. If they couldn’t eat then they were given calorie dense nutrient drinks. The threat of naso-gastric feeding constantly hung over them if they didn’t comply. Once discharged we attended twice weekly therapy sessions and also visited a pediatrician.
They suggested following Maudsley therapy which is where the parents take complete control of the child’s eating. The child has no control whatsoever over what they eat and must eat six times a day: meal, snack, meal, snack, meal, snack. It’s all prescribed. As a parent you sit there at the table for as long as it takes your child to eat. But right from the outset I knew that this would not work for us. Becca was way too independent and too grown up. I said straight away, “this will not work with my daughter, she’s too grown up, she’s too mature”. But we were told this was the standard, this is what we have to do. Meal times, such as they were, would last for hours as Andrew and I took it in turns to try and persuade her to eat but people with anorexia are very determined. If she wasn’t going to eat, she wasn’t going to eat. We could spend all day just trying to get her to eat the tiniest amount of food and I just thought it wasn’t right.
Out of hospital we attended twice weekly therapy sessions and also visited a pediatrician.
After two weeks at home Becca’s weight and obs were so low that another round of hospitalisation was required. We went through the whole process again but again on coming home she could not sustain her weight increase. Another two weeks passed and we were back in hospital. At that point I said “this has to stop, we just can’t keep doing this, this isn’t fixing my daughter. It’s not looking at the cause at all, this isn’t working for us”.
In the background we were making enquiries at other places and we found the Melbourne Clinic where they have the Eating Disorders Program unit. They agreed to take her if her bloods and ecg was okay. We got her medically stable enough and she did their 10 week in patient program. However, when she came home she was still no better. After another two weeks she returned to the Melbourne Clinic for a further 6 weeks.
She came home because she was determined to do two of her IB exams. She was desperate to study. It’s really hard to have somebody suffering anorexia at home when they really are determined not to eat. We decided as she was trying to get ready for exams it was better to take one stress out and not fight the anorexia at that time and allow her to get ready for her exams. However Becca was very unwell and it was necessary to take her to the doctors every day to get her obs done. The doctors were concerned that she could very easily go into a coma overnight from hypoglycaemia. Also she was bradycardic and if she threw an arrhythmia she could easily have died as her body would not have been strong enough to survive a heart attack. Every morning Andrew or I would have to go into her room and check to make sure she was still alive or not in a coma.
She turned 18 during that period of time. As soon as she turned 18, trying to get help for her was almost impossible. We were desperately trying to help her get her through her exams. Her exams were held on the first Tuesday, Wednesday, Thursday and Friday in November. She got to Thursday and on Thursday afternoon the doctor pulled the pin and said “she can’t do it any more, she has to be in hospital”. We took her back to Monash where they kept her overnight and then they said they couldn’t take her because she was 18 now even though we had previously been told that if she was 18 and at school they would take her back to 42 North. Instead they told us that they were moving her to the adult system. I had to drive her down to the acute unit at Dandenong Hospital. After waiting ages and being promised an eating disorder bed we were eventually told that no such bed was available as they only had four of them and they were all full. They didn’t want her to go home so instead they found a bed for her on a diabetic ward. Here their answer in treating our dangerously ill daughter who was terrified of food was to just bring a tray of food and stick it in front of her and walk out the room.
When we found this out on the Saturday we went down and discharged her against their orders. On Monday I set off again. I remember sitting in the car with her and I went “well where do we go Bec, what do we do? Can’t go to Monash. Alfred doesn’t have an Eating Disorders Unit, where do we go?” So I rang Eating Disorders Victoria and said “help”. I couldn’t get her in anywhere so I went into Sandy Emergency and said “my daughter has anorexia and her doctor said she needs to be in hospital and she hasn’t eaten all weekend”. Their response was “oh we don’t have an eating disorder unit here”. I said “my daughter hasn’t eaten all weekend, I need somebody to see her”. So they took her in and as soon as they took her obs they were fantastic, they just took over and they said “actually she is seriously ill”. They realised she was bradycardic and hypoglycaemic.
We were transferred up to the Alfred. She stayed in the Alfred for a few days. They thought she was stabilised so they sent her home. Meanwhile we were trying to get her back into the Melbourne Clinic. We were back to daily visits to her GP. On the Wednesday her obs had crashed so much that her doctor was actually in tears and saying “she’s got to go into hospital she’s going to die, we’re going to lose her by the weekend at this rate”.
We went back to the Alfred via emergency ambulance. At the Alfred they told us she was so hypoglycaemic that she was at the point that her organs would start shutting down. We were told she might die that night.
She then spent five weeks being tube fed in the Alfred. She was released just before Christmas. We had been hoping to take her straight to the Melbourne Clinic but they didn’t have a bed available. She was eventually readmitted on the 4th of January this year and she’s been there ever since.
Ironically she also received the results of her two IB exams on the 4th of January. She’d taken high level English which is the equivalent to university level and she got a perfect score. And biology which is the one that she hadn’t been able to complete all the exams for she got 6 out of 7. The only reason she had been able to study was to quieten the anorexia and by allowing the anorexia to take over she then had space in her mind to be able to study.
So she’s still at the Melbourne Clinic where she’s been since 4th January. The staff there are incredible but it’s clear it’s going to be a very long road for Becca.
Andrew and I are doing a course with Eating Disorders Victoria because we’re trying to educate ourselves better to know how to care for her. It’s more scary than cancer and CRPS because it’s happening to your child and there’s nothing you can do.
She is whip smart and that’s part of the problem. The girls in the clinic are all very, very clever. High achieving, perfectionists. Very focused, very determined people. They’re the character traits that you look for. Most people who have an eating disorder will have all these characteristics. I’ve just read and educated myself. I am helping an amazing lady called Kim set up a support group in this area for parents and carers. It’s hard to believe that something like this does not already exist given the prevalence of eating disorders and the havoc that having someone in your life with an eating disorder can cause. I liken it to having a hand grenade lobbed into the family.
We said to Becca right from the very start “you have anorexia, it’s an illness, it’s nothing to be ashamed of”. If you say you’re anorexic that labels you as an anorexic. Rather you should say you are someone suffering from anorexia. Anorexia is only part of Becca, there’s a lot of other parts of Becca that are absolutely wonderful and she’s a brilliant young woman so we’re very careful to say you have anorexia, you’re not anorexic.
I have been obviously very scared, particularly over the last year of losing Becca. Hearing that your child could die is terrifying. It’s more scary than being sick yourself. Way more scary. It’s almost impossible to get my head around it especially as we were told by doctors on a few occasions that she might not make it because she’s so sick.
As her parents all we can do is be there for her, love her and support her. We use the analogy of being dolphins, we’re by her side all the time occasionally having to nudge her in the right direction. We externalise the anorexia and that way we can stay calm and consistent with her. It’s hard because anorexia is a sneaky, devious disease but you just have to remind yourself that it’s the anorexia and not your loved one that can make them behave in ways you don’t like and ways that you wouldn’t have thought they would.
In all of this I’ve discovered that you just have to be open. You have to understand that the medical community doesn’t have all the answers; that Eastern needs to meet Western medicine. We are very happy to look at different forms of therapy. Mindfulness is amazing and can do huge things. Just taking that bit of time out just to put yourself in the present and to just sit with the present moment and your feelings. It’s hard at the moment with Becca being so ill,
I also think there’s a big connection between me and her and what’s happened to me and what’s happened to her. One or two people that we’ve seen in the more spiritual community have said “what happened to her when she was about 14?” It’s when I had the CRPS and the cancer. No-one thinks it’s the cancer because the cancer’s controllable. The CRPS is an unknown and Becca can’t control it. I view the cancer as taking a silver bullet for my girls. Once I was diagnosed I was eligible for genetic screening. The screening showed I had a genetic mutation and we can now put into place strategies to look after the girls.
And I think things either break you or make you stronger. For Andrew and I, it’s made us stronger, individually and as a couple. Acceptance of your situation is the key – once you can accept the changes and stop being angry or upset about what has happened, you can let go and move on. I feel like the earth could throw anything at me and I could just go “right okay, we can deal with this”. I’m not the person that I was four years ago, this has changed me and I’m not as rigid in the way I think. I’m definitely a lot calmer. But not only am I calmer, Andrew and I are now discussing more spiritual and more holistic things and we now know that we need to listen to the universe more and take more notice. I certainly needed to be knocked off the path I was on. There’s always a reason for something and you might not be able to see it there and then but it will work out. The past is gone, forget it, you can’t control the future, you can only live in the present.
Again, thanks for sharing Helen. Big love to you, Andrew, Becca, Charlotte and Josh.
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