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MATILDA
Graeme Walker • Jun 20, 2019
Written by Brad Watts
I stood there looking at my two-year-old daughter Matilda dying in a hospital bed. I had begun unravelling watching the scene play out, I had lost control of my emotions as for the first time in my life, real gut wrenching fear began to take over. I was yelling at the doctors and nurses who hadn’t yet picked up that my daughter was unconscious with Raised Intracranial Pressure. She was displaying ‘cushing reflex’, this meant her blood pressure was increasing, pulse dropping and her breathing becoming irregular. We were going to lose her unless someone did something to save her.
This moment was crippling. Because I was a paramedic and medic in the Army, I was used to seeing scenes like this. Yet in this moment when it was my little girl laying there I was unable to do anything, hamstrung by the hospital confines and my now weakening rational thought processes. All I could do was vent my frustration at the medical staff who, in my mind, at this stage were useless. They didn’t seem to have a plan and were flapping about… I wanted to take over and started barking orders at the staff. I wasn’t helping. I had to leave the room and so, in a daze of anger and frustration, I walked into some sort of storeroom and threw a commode chair against a wall. All I wanted was to fix what was happening in my daughter’s room but I was stuck here losing control of my emotions.
A hospital orderly came running into the storeroom, took one look at me and turned around immediately and bolted. I don’t know how I looked at that poor orderly but it had obviously been enough for him to turn and run. In that second, after that reaction, I stopped. What was I doing?
My daughter was laying there and I was now in another room not helping her. Losing control like this served no purpose. What my daughter needed now was people helping her, rather than people getting emotional about her critical situation.
I walked back into my daughter’s room and talked with the resuscitation team to get an update on Matilda’s progress. They had stabilised her airway and for the moment her vital signs were holding steady for the moment.
Matilda needed a CT scan immediately to figure out what was going on inside her tiny little skull. Something was causing the pressure rise and we had to figure out what. My ex-wife and I went with her to radiology and sat in a small waiting room as the medical team performed the scan next door. The anxious moments of waiting the results to come through seemed like a lifetime knowing our little girl lay vulnerable and alone in an x-ray room next door.
A doctor came to speak with us, they had found a large tumour on Matilda’s brain stem and she would need immediate key hole surgery to release the pressure before they could perform an operation to remove the tumour. In the tension of the moment, I looked at the doctor and said, ‘Why are we still talking?’, it seemed like an obvious and necessary thing to do and we were wasting time chatting about it. Every second her brain was in a swollen state she was at risk of losing her life.
Over the next 18 hours Matilda underwent burr hole surgery to release the pressure followed by an intense operation where a paediatric neurosurgeon cut a window out of the back of her skull and used robotic surgery to remove the tumour. This remarkable man was shaving within micro millimetres of Matilda’s brain stem, carefully balancing the need to remove the tumour with the risk of cutting into the brain stem – an incredibly hard job that he just got on with.
Over the next two weeks we sat with Matilda, firstly in intensive care willing her to wake up, and then in the high dependency unit and ward as our little girl started to come back. Firstly, we started softly with waking her up and getting her talking again. Every word she whispered was a little win in a big race for life. With time, and increasing strength she was able to sit up, then stand, and then walk. All of this took time and patience.
Often the physiotherapists would come in and do an hour of rehabilitation with her and then say she should rest, but by the afternoon she would be ready again. Her enthusiasm to just get on with it inspired me. So, I would get her up and push her further by going through the physio sessions again just the two of us; walking and training until she was exhausted. I knew in my mind that every second of pain we worked through together was helping her grow more determined. Her resilience in those moments was constant. She often hurt and would be upset, but she would always try to do better. I couldn’t be prouder of her in those moments.
Once we got Matilda home, we started the long-term therapies; hydrotherapy, physiotherapy, speech therapy, and all the others. Our mission was to build Matilda back to be the best version of herself we could ever imagine.
Eventually, we sat with an oncologist who outlined the treatment options while we waited for Matilda’s condition to stabilise. We could go through chemotherapy, or focal radiotherapy. We researched all the papers we could find to decide the best treatment options for her type of brain tumour and the impact it has on children. We couldn’t find any firm evidence that, for her type of tumour, chemotherapy would make a difference. However, there was significant evidence that chemotherapy delivered to a little girl under three years old could cause significant adverse effects later in life. We made a call, we weren’t going to go with the chemotherapy. We would try the focal radiotherapy, whereby radiation is beamed directly to the tumour.
For the next seven weeks, five days a week, Matilda was strapped into a machine with her face bolted down to a bed by a custom fit ‘hockey mask’ which would hold her head still to enable the radiation to target the tumour. Any movement risked damaging brain tissue that did not require radiation.
This process for someone Matilda’s age normally involved a general anaesthetic as most kids could not lay there in such a frightening position with a large machine whirring around them. Matilda though, within weeks, slowly taught herself to suppress her fear and emotions and was able to lay still for the last five weeks without sedation. This turned a whole day process into a couple of hours – all through her resilience and determination to just get on with it.
After seven weeks, Matilda’s interventions and initial treatment were complete and so we spent the next three or four years watching her recovery. Watching nervously for any signs that the tumour had returned, watching to see how well she recovered from her injuries and watching to see what deficit she would be left with after her small body took on such trauma at an early age.
As she grew and developed into a little girl my ex-wife and I made a pact. We would not treat her any different from any other child. She would live a normal life and not be molly coddled due to having a setback at a young stage in her life. Whilst we ensured she received her treatment and worked with her through her difficulties, we also ensured she was in a normal class with other kids at school – doing what other kids do, enjoying life as a child.
Over the seven years since, Matilda has exceeded our expectations. She has recovered and each scan and each review has passed without further incident since that day of the diagnosis.
We have made it for now.
There was once a moment, when her life was so fragile, where all we wanted to do was keep Matilda for just a few moments more. Just one more minute. One more hour, one more week, and so now, to watch her grow into being the amazing 10—year-old girl she has become means we have truly won the lottery of life. And so, we spend our time enjoying every second of her courageous life by enjoying every milestone she reaches.
Matilda’s resiliency has taught me that sometimes we get dealt some rough hands. That’s life. You can choose to dwell on the negatives or you can come out triumphant and use those difficult moments to build you and shape your future to be a better you.
Life is a gift that we are lucky to enjoy and Matilda’s illness made me realise that life could be over at any moment, for anyone. Therefore, if the wind fails to serve you, take to the oars and make every moment count.
Brad is a former Australian Army medic with the Special Air Service Regiment (SASR). He is a father, mountaineer and a trek guide.
Most girls dream of their big day, meeting the love of their life and having the most beautiful wedding. They have a dream dress in mind sometimes well before even knowing the person they might marry. But for me it was different, I never dreamt of that day. In fact I had a perspective that was quite the opposite.
When Brin and I brought our first house, we were beyond excited to finally have our own space. We moved in together in June 2015 and couldn't wait to start our next chapter. A few days before Christmas 2015, we were both going on our annual works night out, I dropped him off at the pub, he told me he loved me and that was to be the last time I saw him.
Written by Wendy Searle When I reached the South Pole in 2020, I was exhausted, elated and not a little relieved. I had just completed a 42-day solo, unsupported expedition; over 700 miles of vast, white nothingness. Those feelings persisted throughout the flight back from Pole (which took only 4 hours, to do what had taken me five weeks), throughout the return to the UK via South America. I had already been delayed at the start, thanks to bad weather, so I returned to work after a long weekend at home. My colleagues seemed genuinely glad to see me back, and were interested in my journey. For the first week or so, I couldn’t sleep, despite being achingly tired. (I also couldn’t stop eating, after losing 10 kilos in just over a month, so much so that I once had to stop for supplies during a 15-minute walk.) I was high as a kite, and still so wired after the continual focus of expedition life. It’s akin to climbing, or skydiving, where your whole focus is in the moment. Was I too cold? That could be fatal. Was I too hot? A surprising risk in polar latitudes, as if you sweat it will freeze. Was my kit OK? How long to the next break? And on and on, for what felt like forever when I was actually out on the ice. It’s that element of total immersion, of being so far removed from the everyday – emails, traffic, work; that is at once so daunting and so addictive. After the initial high dropped to merely walking around being more back there than present here, I started to think about going back to training. For what though? I had nothing to train for, and very little in reserve. I took to tyre hauling, which is what I spent so much of my time doing in the run up to the expedition – the traditional method of building leg strength and endurance for pulling a sled (or pulk) for 11-12 hours a day. As soon as I strapped on my pulk harness, I could transport myself back to Antarctica. And that helped, because I was struggling to readjust to life after expedition. It wasn’t just those weeks alone on skis that I missed. I’d been planning, training and fundraising for what amounted to just over 1,000 hours, for five years. I’d met a team of soldiers who were traversing Antarctica, and I became more and more drawn to this extraordinary continent. I read some polar history, some accounts of the first Polar expeditions, when they were true explorers. Despite not having any kind of adventure experience to speak of, I was hooked. I dedicated my life to making the expedition happen. Everything was in pursuit of the Pole. If I read a book, it was about Antarctica, if I had free time, it was spent attending events where potential sponsors might be found. I spoke to everyone who had ever been to the South Pole that I could. After working out what training and experience would be required, I set about ticking it off; Norway training, a spectacular crossing of the Greenland ice sheet, time alone in Iceland. The training was, if not at the level of an Olympic athlete, was certainly dedicated. Twice a day, for six days a week, I hauled tyres, ran up hills, lay in rivers and ice baths, and put up my tent in my house, over and over so I’d have the muscle memory ingrained when I was tired at the end of a long day skiing. Once I was back, I decided the only cure for the huge gap in my life that all those things had left, was another expedition. I don’t think I’m unique in that regard, but I actually missed the build-up, the nurturing of this idea, which became the expedition, which eventually took on a life of its own. I missed the slightly-sick feeling in my stomach when I thought about actually having to go ahead with what I set out to do, the uncertainty of my ability to complete the journey. When COVID stopped all travel outside the UK, my plans took a hit. The world became smaller overnight – so small it really only included Wiltshire, where I live. I’d gone from an all-or-nothing challenge to, well, nothing. Ideas, plans, even talks with sponsors, were pushed into the long grass. Ironically, after finding the South Pole on my own, I felt a bit lost. But gradually I began to see that the adventure can lie in the everyday. I had to if I wasn’t going to lose my mind. I bought a mountain bike for the first time, and began to explore the local off-road routes and tiny jumps. I wrote a book proposal about my journey. In the end, I think that period of quiet gave me to time to reflect on the enormity of what I’d done – being only the seventh woman in history to complete the journey solo, unsupported, from Hercules Inlet to the geographic South Pole. Instead of jumping into another trip, I allowed that to sink in, for it to become part of who I was. And now I’m ready for the next adventure.
A few hours later, I’d be called back to the hospital under the pretense my consultant had a cancellation. He sat me down and told me that I had a brain tumour. It was an acoustic neuroma (sometimes known as a vestibular schwannoma), a low grade, but in my case, uncharacteristically fast-growing, cystic tumour that was growing on the hearing and balance nerves within the confined space of my skull. This explained many of the symptoms I’d been experiencing recently, but not all.
I lost all of my hair at age 2, due to the autoimmune condition, Alopecia. It was extremely hard to navigate not knowing anyone else with my condition. I felt very alone and isolated. I began to wear a wig since I can remember to fit in with everyone else. I never truly felt like “me” but I didn’t know how to be ok with my Alopecia and the emotional roller coaster that was being bald. Kids were extremely mean to me and bullied me a lot for my wig and lack of eyebrows and eyelashes.
I don’t recall much about the call. It was a dead guy, or girl. I helped the coroner collect the body and went outside. It was night-time and the lights from our overheads were swirling in the darkness. I began speaking with another deputy, and suddenly became aware that I was seeing his face as he would look if he were dead. It wasn’t a conscious decision, it just happened. It wasn’t as shocking as one might think. I blinked and even laughed to myself about it, but I couldn’t shake myself free from what I was seeing. It should have been a sign; I should have questioned what I was seeing, but I didn’t. My mind had begun to operate on its own. I should have questioned what was happening, but I didn’t. I told myself it must be a natural repercussion of seeing so many dead people. But it didn’t stop.
Written by Rachel wild I am a survivor of sexual abuse by my own father. Still feels like a taboo subject even currently. Therefore, it is so important for me to speak out. bravely... loudly... so everyone can hear. It was not my fault, sexual abuse is never the victim’s fault, but they carry it like it is.... they carry the shame and the guilt and the anger. The man who was meant to protect me from all evil in the world was the person who damaged me the most. Both parents were abusive physically and mentally, which I still struggle to understand as to how you can hurt your own child. I have been on an incredible journey and life has been made much harder because of this, however it has made me fight hard to do the right thing, it has made me resilient, it is developed my kindness and compassion. It also affects your ability to trust, I have nightmares, I have hyper independence as I have always had to do everything on my own. I went into care at 15, I got my own flat and three jobs at 16 and took myself to night college and studied to become a beauty therapist and Dental Nurse. I have always had a defiance, a drive, a determination to not let what has happened ruin me or use it as an excuse to behave poorly. I strive to do well in life, I have had so much stolen from me, I have a lot of life to live and make up for. I have slowly over the last two years started to process what has happened, I have felt incredible hot white rage, depression, panic, such sadness I have not wanted to go out, grief and loss of my childhood and all the things they stole from me. But I have grown as a person. I do not carry this secret alone, I feel empowered, calmer, more peaceful. It has given me kindness and compassion for myself. I want to help other survivors of sexual abuse, I want them to know life can be good, you can move forward you can heal. For me what has helped me heal, has been unburdening myself and sharing, reporting to the police, friends, support from counselling and specialist services, running, nature, mindfulness, meditation, and yoga and cheese and chocolate! Walking into the police station to report this was one of the most terrifying things I have ever done. What happens if they do not believe me? what happens if he comes and gets me and attacks me? what happens if other people attack me? I had the most incredible Detective, who listened whilst I told her some of the most intimate details of the abuse, feeling so ashamed. Not once did I feel judged, I felt listened to and cared for... and eventually so empowered. Not straight away, I felt exhausted after reporting, scared... I could see him everywhere. I had panic attacks, nightmares, I could not sleep... this lasted for about 12 months, and then eased slightly. It is normal to feel how you feel, it is important to acknowledge it and access help, the Independent Sexual Violence Advisor at the RASASC (Rape and sexual Assault Unit) probably saved my life, as did the support from my friends. If someone discloses abuse to you, be aware of the strength and vulnerability that it takes, you might be the first person they ever tell. It is so important to listen... just listen... please do not judge, please do not tell them how they should or should not feel. Just listen to them and do not interrupt, depending on the situation later ask them if they have ever spoken to anyone.... and would they like to talk to someone who deals with abuse/rape/assault like the RASASC unit. Just telling one person can start a domino effect on the path of healing. You do not have to report to the police, ringing an anonymous line, telling a friend, a counsellor, journaling can all start the process to you feeling lighter and getting on the road to peace and contentment. I reported sexual abuse by my father in 2018, he was being charged on the 15th of September and did not turn up to court. A warrant was issued for his arrest, he was found dead at home. Ten days earlier my Grandad died, he was my only family member so the past few years have been incredibly difficult. The last few months were so difficult, but also because my father is dead for the first time in my life, I feel safe. This will never go away for me, it will always have happened, so it is a life-long journey, it is part of who I am. Please do not tell survivors to put it behind them, forget about it, or move on, it is not that simple. Trauma is complex, I still have nightmares, I still think I see him, I still feel unsafe if out running and there is a man that looks like him. Even though my brain knows I am safe, my survival brain is trying to keep me safe. I have always been a very private person and kept things to myself. One of the things I have found most beneficial and helpful is talking to other survivors. I have always felt very alone and felt no-one understands (and I do not want anyone to have to experience this), especially with it being my own Father. The feelings I have had, and the experiences resonate with others and it has made me feel more understood, more normal almost. No two experiences are the same even if the circumstances are similar due to a multitude of factors, but there are some common denominators which have brought me comfort. The compassion, awe, and kindness I feel for other survivors, is something I have been able to start to apply to myself, which has been difficult. As a coping mechanism I downplayed, minimized, compared my situation, it is a survival technique that trauma victims use. This meant if I made it small it was not that bad, so therefore I did not have to deal with it. I am thankful for our incredible brains; I think it is fascinating how our brain protects us until we are ready to deal with a situation. Due to the abuse, I am a huge advocate of speaking out about abuse and rape and helping individuals to become empowered and hand the shame back to the abusers. I want to raise awareness so more people can speak out Bravely and be heard and supported and access the right help. I am working with RASASC (rape and sexual abuse Centre) this year to help provide training for the police and other agencies in how to help survivors. I am also going to train as an Independent Sexual Violence advisor, because how you are treated and supported is essential for the healing process. I also want to show people that with the right tools and support they can cope, they can have an amazing life....and that life can be great.
My sense of adventure and my love of sports started from a very early age. I grew up in a military family which meant we travelled the world as my Dad was posted from one country to another. I went to more than 15 different schools and lost count of the number of houses we lived in. For many children this is extremely daunting, but for some reason I loved it, I was always on an adventure.
I wrote this letter to articulate how the experience of post-traumatic growth has affected my life and through my own lived-experience, how my friend Pain was difficult to live with for many years. It also highlights how, pain must be present in our lives to experience the beautiful, the pure and the good. Life is a short and yet bittersweet journey, that to appreciate fully will require finding your strength that is forged from within.
It's something that I thought would never happen within my lifetime, I don’t think anyone would have thought the same. For one moment within that initial chaos, it became real that we were to put our lives on hold. Not just that, the whole of life was put on hold for everyone. So all these months later, what have we learned?......or have we? When it was first said it was only going to be 3 weeks in length but those few weeks turned into many months. For most people, everything within their life had to change. They then had to find a way to get through each day. But something I’ve realised that maybe many haven’t was in fact that, 2020 has been the biggest wake up call for humanity. So why would it be the biggest wake up call at all? What I’ve seen was how people had to adapt to this ‘New Normal’ but not just that, they had to find a way to live. I took every opportunity to build and learn. I wrote a book, started a podcast, built a business and expanded my network. But through this time, once again I often questioned a lot of what was happening. We saw a rise in celebrities carrying out morning workouts, focusing on using physical fitness to help us all put us in a positive mental headspace. For once, it seemed that all the things I had been using to help manage my mental health for years was being used to show people how effective it was. Same as going outdoors, exploring the mountains and hills, just to take time out in nature. So did it take a worldwide pandemic for people to actually get up and become active? It seems not just the power of exercise but also we saw, the canals of Venice crystal clear and the smog lifted from the Himalayas to finally see Everest. For once we could see the destruction we’ve done to this earth. But will it last? Absolutely not, it’s not that I’m pessimistic, definitely not. But I don’t have the greatest of faith in humanity at the best of times. Even though, I’ve consistently used my social media to promote positive mental health and for people to think for themselves so they can better themselves. A large majority of people will continue to carry on their usual routines ignorant of the destruction that we’re doing to this planet. Just think of that one piece of rubbish that was lingering in your hand, how powerful that is. Why you may ask, think of that one piece of rubbish, we’ve now got a choice. We can put it in our pocket and put it in a bin and let it be collected to be put in a landfill site to be covered with other millions of pieces of rubbish, slowly decomposing but working its way down to the water table. Or we can drop it with all the rest of the rubbish that another person has dropped, for it to collect and suffocate the seas, pollute the earth, choke innocent animals in their natural surroundings. The choice is yours, but one thing we need to do as a society is have a global rethink on how we protect this planet. Years ago, I came up with a recycling project that was cost effective and which would put an end to landfill sites. I was rejected by Councils and local authorities. It was simple in its approach, filling sealed Olympic sized swimming pool vats with rubbish using chemicals to break down the everyday household rubbish but leaving the materials that could be recycled. But not just that, at every level of the operation, there would be a filtration unit that would clear the rubbish in the chemicals, scrubbed and reused. The factory could be powered by green energy, reducing the carbon footprint. We are slowly choking and suffocating the earth and oceans with all the rubbish from products we consume. It’s a simple choice really, we concentrate on developing ourselves in subjects that are either intrinsically or extrinsically motivating depending on your needs Vs wants but we don’t spend enough time concentrating on how we can all improve the world around us. So whilst we’ve seen that level of self development rise and a large number of people have been intrinsically motivated to create and build a positive lifestyle, there are many that have jumped on the bandwagon and to join in this movement to escape the lockdown blues. So whilst we saw a large number of people out running, cycling, walking in the hills, using this excuse of “Because Boris said we can” what happened when the lockdown was lifted? Did they do it because it was a way to show some kind of compliance or rebellion? How many people actually changed their lifestyles or carried on post lockdown. Did they look at what they needed to become better instead of carrying on being full time members of the Netflix and Dominos club? So if Sir David Attenborough joining Instagram wasn’t enough to show the world that it needs change, that we as a population needs to open our eyes and see the destruction that we’re doing to our planet. Then I don’t know what will make people change. We as a population need to take our level of self accountability to a whole new level. 2020 has been an interesting year, one I hope we all learn from because if we don’t, then it’s only going to get more difficult. Now if I can create a business, write another book, start a podcast to get people talking more, having those important conversations and network on a higher level, then I can’t see why others can’t too. Globally, we’ve got the power to interact and connect to anyone at anytime. So let’s make a positive change, together we can make a change but let’s not carry on being politicians pawns on their global chessboard. If one person can create one positive action, just think of the possibilities of what millions can do?