Finding the courage

I have always loved writing and haven’t written anything in a while. Why? I ask myself this question all the time.

Today, I just sat down with my laptop. Closed my eyes. And the thoughts started to flow. I began to experience this well-known feeling of desire to write, produce and be inspired. I missed this. It is not that I have been lazy. I have been working hard, volunteering, discovering, educating myself. But sometimes, the things that we love the most bring so many emotions and memories that we just try to squeeze them out of our minds and pretend like they don’t exist.

I don’t know why I paused writing. I think I was worried I wasn’t good enough. Worried that no one was reading. Worried that there is no point.

However, recently I thought … f**k it.

I have a lot to say.

I have been thinking of writing this for a couple of years now but never had the courage:

In January 2013, I was diagnosed with Diffuse Intrinsic Brainstem Glioma. Or in less fancy words, Benign Brain Tumour. It all started around the Spring of 2012 with slight twitch in my right eye, leading to a permanent face asymmetry by the end of 2012. That is the time when I had my first Magnetic Resonance Imaging (MRI) and was told that I had a brain tumour.

Only few of my close friends and family know about my diagnosis. And I always wanted to keep it that way.

For 3 reasons.

  1. I did not want people to pity me.
  2. I did not want people to think that they have to pity me.
  3. I did not want people to think that I want attention, their pity or want to be treated differently.

I never wanted the condition to define me. To put me in a box and people thinking either: ‘Aaa you know, that poor girl with a brain tumour.’ Or ‘Ohh, you know that attention seeker. There is not even anything wrong with her.’ So I kept quiet about it.

But the diagnosis did affect me, did change my life and defined who I am as a person, my believes, motivations, fears and struggles. It affected my family, my outlook on life and the way I see myself.

It caused me a lot of stress, anxiety and had an impact on my mental health. I was on antidepressants, Xanax. I have been suffering from panic attacks.

Despite all that, it brought a lot of good. It made me re-evaluate life and its meaning, changed my perspective on things. It also significantly improved relationship with family and accentuated my love for them. It made me to be present in the moment, appreciate every day, cherish the amazing life filled with opportunities and be grateful for what I have and what is yet to come.

I don’t want this to be too long. Not because I ran out of things to say but because firstly, I don’t want to exhaust you and secondly, I intend this piece to be a beginning of something bigger.

As I mentioned beforehand, I have been very reluctant to write this and even more unwilling to release it to the world. I don’t want anyone to think that this is a cry for attention/help. I would like to dedicate this place to talking about my life with the diagnosis, how I’ve been not/dealing with it, what I found out but most importantly to create a platform where I can learn about others who have similar problem or are interested in this area.

This is a work in progress and I am delighted to be able to share it with you. I plan to write about different aspects of life with a brain tumour but also talk to other people who have their amazing stories to tell. We all have so much to say and there are things worth spreading.

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2 thoughts on “Finding the courage

  1. Only through talking can we make brain tumours recognised for the life changing impact, even if they are not immediately fatal. Our users too often tell us people will say well it can’t be serious because you are walking, talking and working. Not realising the effort this may take. Go on with your journey you are not alone and @BlueAssist we support you.

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