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britt-rae-law · 5 years

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It wasn’t Rocket Science, It was just Brain Surgery

09.12.2016 - It has been 10 months since my brain surgery to partially remove a central brain tumor. Emotionally and psychologically coming to terms with the experience has been the hardest part. It has been a difficult topic to really talk about and explain to others, which is why I have found it easier to shrug it off as no big deal. I also feel self-conscious about my experience to a certain degree. But lately I have been thinking about how reading other people’s stories about brain surgery recovery helped me in a way no one else could have: explaining what to expect, if certain things are normal or not, the do’s and don’ts of recovery and finding the personal motivation to recover. I have learnt a lot about myself and have had an epiphany about life and identity. I came to realise that your entire being - who you are - is shaped by your brain. You are because you can think and feel; and you can’t do that without your brain. Your whole body is just there to protect and utilise your brain. I have decided that it might not only be cathartic for me to write my own experience, but could also be encouraging and useful for others.

On the 2nd of February 2016, my world was changed forever. After months of going to doctors in order to treat - or at least find out the cause of - severe migraines, random projectile vomiting, pins and needles, constant fatigue and sometimes blurred vision, I finally found out from a specialist that I have a brain tumor. Sitting in the waiting room and seeing the nurses facial responses to my MRI scan was unsettling. Waiting rooms are undoubtedly a symbol of anxiousness. I remember not knowing what I was about to be told, but feeling the tangible sense of unease fill the room. I could never have predicted how much my life was about to change.

The news was surreal, one of those “this happens to other people, not to me” moments. I didn’t grasp then what I was being told. After a couple of days back at home, I returned to hospital where I met the neurosurgeon who was to perform my operation. He carefully explained the procedure; cut open my head, remove the veins of the tumor, cut down the middle of my brain, drain the growth then cut out what they can. Funny how the first time I cried was when he told me that I would be missing three months of varsity.

I don’t remember much after that. I had the surgery on the 9th of February and had been in a deep sleep for a couple of days. I was told that I had two grand-mal seizures and an aneurysm; my left side having lost motion. Waking up and becoming conscious really are two different things. I had been told stories about being awake and having conversations with people, but I do not remember any of those experiences. During the process of becoming conscious, I was suddenly aware of how different everything felt. How difficult it was to perform simple tasks and that everything over-stimulated me to the point of exhaustion. As I was slowly becoming aware of my body and what I had just been through – knowing the long row of stitches across my head is evidence of the trauma – I became responsive and emotive. I was experiencing fear, anxiety, restlessness, nervousness, worry, doubt, and a lingering unknown. There was a massive flood of emotion for a couple of weeks owing to the realization that I was alive and had survived something so traumatic. Then I couldn’t sleep. I was so scared. The nurses would bathe me and talk to me until I calmed down. I remember having asked to brush my teeth at 3 A.M and the nurse said no. That was the first time I cried since the operation. I think I cried every day after that. They don’t tell you if you will eventually stop being so emotional; and if so, when?

My biggest shock came when the physiotherapist asked me to move my legs up and down and I could only move my right one. I would lie there for ages thinking, “move”, and picturing my left leg sliding upwards and downwards. But nothing would happen. The frustration experienced in that moment was something I had never felt before. The disconnection between my thoughts and actions and that loss of control was absolutely terrifying. Looking at me, you would never think I was having such an intense internal struggle. I may have just been lying there, but I was spending every waking moment trying to overcome my body’s resistance to movement through thought. I felt trapped inside my own body. That’s when I realised that you and your body are so separate. I experienced this again in situations where I would grab things tightly in my left hand, clenched fist, and be unable to let go. I had grabbed a nurse once, and no matter how much I wanted to let go, my hand was not listening. This was a similar side effect to split brain patients; my left side of my body was not listening to the right hemisphere of my brain.

The realization that I stuttered, and spoke very slowly, frustrated me. I would try to speak as little as possible and would grow despondent upon hearing myself, as it did not coincide with what was going on inside my mind. I had uncontrollable tremors in my hands and arms. An occupational therapist tested me with some basic mathematics and memory exercises. It was harder than I thought it would be. I felt like a child as I struggled to identify shapes and objects. At times I would be okay then suddenly hit a complete blank and panic. She said this is called a “brain stutter” and occasionally this still happens to me now. But I have learnt to take a moment to think of something else until I am settled enough to return to the previous task. I have forgotten things. But I don’t know what things I have forgotten until I am presented with a person that I should know or story that I should remember, but don’t.

Learning to walk was the strangest feeling. I never knew how much thought and co-ordination goes into something so “easy”. I noticed how my concentration during such a seemingly simple task was affected so greatly by the environment. I became aware of how different walking is in a crowded space versus an empty space; a well lit space versus a dim space; stairs versus the ground, ect. I eventually changed my mind-set so that instead of feeling frustration or upset when I was struggling or unable to do things, I would celebrate small victories. Victories such as eating without messing, going to the bathroom on my own, putting on my slippers by myself, using a zip or fastening a button and picking things up with my left hand. These are small achievable goals that kept me positive and motivated me to recover.

The aknowledgement of this tumour and the aftermath of the surgery changed me. I became aware of this foreign body within my brain and its presence became defining. In order for me to move on in life I had to accept and normalise its existence. No one has the intention of making someone diagnosed with a tumour feel like a pariah, but it tends to happen with the sensitivity of a life altering diagnoses. The fact that I was someone with a brain tumour surrounded by people who do not have one; or that I am someone who has had multiple brain surgeries, automatically makes me feel like an outsider.

Audre Lorde in her Cancer Journals said “either I could love my body one breasted now, or remain forever alien to myself”. This statement hits hard. Coming to terms with your own identity is no easy task especially when it is something life altering; I had been through this process once before with my sexuality. And so I decided that I needed to accept myself with a tumor and as a brain surgery survivor, or be alien to myself once more.

These internal struggles continue – even now - unbeknownst to those around me. My thinking is definitely slower than before and it takes me longer to process and respond to things – sometimes this can be overwhelming, even if I am the only one aware of it. This is where insecurity comes in to play; at times I wonder if I am being perceived as “normal” in social situations. This then makes me feel like I should explain to to strangers that I am still recovering so that my behavior can be understood. I don’t know then if people are looking at me with curiosity, concern or confusion. Sometimes I feel strong in what I have overcome, and at times I feel so alone in my experience. I learnt to go easy on myself, and take things slow. My happiness comes from being myself in comfortable spaces; a renaissance that is truly liberating. I say renaissance because there is a clear distinction of myself and life before and after the surgery. Things feel different. Things are different. There is no way to tell if what I feel/ felt was normal. But my new normal involves an inner peace that does not take life for granted.

I didn’t know that It would take this long. I didn’t know that I would have such difficulty placing my own personality. I didn’t know that I would feel so foreign in my own body, so much so that I didn’t like looking at myself in mirrors or photographs. I wasn’t okay with being this person. That I would put on so much weight from the medication and the lack of mobility. Or that I would be so fearful of old symptoms returning and that I would feel a sense of guilt for surviving something that so many others didn’t.

The surgery is physically over, but mentally, I am still processing everything that had happened. I could go on but instead I will say that I am thankful my surgery went so well and that I was where I needed to be at that time. Now I am able to adjust to new strategies and am dealing with these overwhelming feelings in healthy ways.

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20.09.2019 - Today I write this 10 months after my second craniotomy under completely different circumstances. I have experienced this recovery at a different stage of my life, I am older, wiser and more motivated; facing a new perspective on the human experience. Learning from everyone around me as I know that everyone has a story and everyone is a lesson, offering a unique perspective on the chaos of humanity. My second diagnosis and surgery did make me wonder what lessons I still needed to learn. I was angered. Then depressed. Wasn’t one surgery enough? Then I surrendered. Truth be told, there has been a lot to learn... and there’s still so much more! The most valuable lessons about my body, health, consciousness, community and purpose came from the aftermath of the second surgery. I suppose at some point, you need to decide whether you are going to be a victim or if you are going to use the resources you have access to in order to deal with the situation you are faced with.

Although living in the past can hinder your ability to move forward/overcome. Looking back and consciously reflecting on how far you have progressed through a certain phase in your life is rewarding. I often do that of course when I think about my progress from my first surgery until now. But do not stay there too long. Do not allow your past experiences to define you. Allow them to inform your future and motivate more progression. I am also acknowledging the importance of bridging the gaps between geography and lifestyles as the older you get, the more you realise you need the people from your past. I have been pleasantly suprised by the teachers, friends, classmates, mentors and family members that have laid branches and connections to me in the most unexpected ways and places. I reflect on these relationships and acknowledge their contributions with gratitude.

I came across a quote by Tony Robbins that said: “it is not the events of our lives that shape us and who we are, but rather our beliefs as to what those events mean.” And those beliefs are determined by the way in which we tell our story. The meaning we attach to the events—how we interpret them— is what shapes who we are today and who we’ll become tomorrow. And I am now actively telling a better story in this chapter of my life by creating the reality I experience rather than passively becoming my default self. Now knowing that things happen FOR you, and not TO you has been game changing for me. And since curating the world I immerse myself in - deciding which communities I am a part of, deciding what motivates me and why, choosing to only invest my energy into things that will contribute to achieving my goals - I have recognised the power in my sense of self.

This is a new sense of self whereby the changes and transformations I am making on the other side of this trauma have presented an opportunity to identify and build a new structure and way of living. This change has at times been uncomfortable - but as Nerri Oxman said in ‘Abstract Art of Design (Season 2 episode 2), “If it feels uncomfortable, you’re probably doing something right.” This process of change has also brought along with it responsibility, which I now understand as the ability to respond to circumstances. I am in control of my responses and no longer a victim of my diagnosis or as a patient, providing a reorientation around healthcare and healing. Now knowing that ‘Doctor’ means ‘Teacher’ (and not healer) and that movement and food is the best medicine, I can asses that medication, doctor visits and language were not the best ways for me to recover, but rather movement, community and nourishment has allowed me to surpass previous mis-understandings of what my healthy self should be, look and feel like. For me, the courageous part of it all has been turning towards the self, orienting the symptoms - how I feel and what could have caused the tumor to manifest - and making the necessary changes. Everyday I see how I have progressed in different facets of my life, I can’t help pass judgement on myself but i am aware that it is an endless process.

This has cultivated a new kind of strength coming from a different place of mature consciousness - one that has developed from healthy habits, consistency and daily practices.

And so the journey continues...

#survivor #Brain Health #Brain Tumor #Personal

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