How to stay positive during difficult times: Sammy’s story
The last few years have been a bit of a journey for me.
When I was 14 years old, I started getting dizzy spells. And by the time I was 18, these became monthly occurrences, involving the odd blackout. My GP referred me for an MRI scan just to “rule anything out” and it was then that the pilocytic astrocytoma brain tumour was found.
For the longest time it was never referred to as a brain tumour. It was called a “lesion in the fourth ventricle” and I was told not to worry about it, because it wasn’t a “nasty type of tumour” and probably would never cause a disruption. I had annual MRI scans from my diagnosis, when I was 18, until the age of 24 when I was due to be discharged. But that “final” scan, in December 2018, showed that the tumour had grown, and I now needed brain surgery.
2019 was a whirlwind year of battling conflicting surgical opinions, worsening dizzy spells, constant MRI scans, fearing the ticking time bomb in my head and mostly acting as if nothing was different. A very small number of my immediate family members knew about my upcoming surgery, but the rest of my family, friends and colleagues didn’t.
I purposely kept my surgery secret because I’ve always believed that a positive attitude, and what you choose to focus your attention on, really impacts how you respond to an event and the experience you’ll have. I therefore didn’t want this news of surgery to consume my daily conversations or have others inflict their worries and caring concerns onto me. But being in London, away from family and surrounded by people I haven’t known all that long, just made keeping this secret incredibly challenging at times. Acting my usual, positive self, whilst at work, left me emotionally exhausted at the end of most days, when I’d then go home and would be hit by the enormity and scale of this daunting reality.
There were things I did then, like setting up BITB (beautybrainuk) and inscribing my favourite quote onto a bangle, which were amazing for providing a distraction and constantly exposing me to optimism that powerfully changed my mindset whenever I did experience negative thoughts. And I also found therapy in expressive writing, as I discovered I was able to clarify a lot of thoughts and feelings whilst doing so.
In June 2019, my surgery date finally arrived. Despite everything, I remember being so calm on the morning. It was a mix of adrenaline and fear, but also an incredible relief that after all these years, MRIs and regular dizzy spells, it would soon all be over.
Looking back now, I was a little naive to think that brain surgery meant the end. Instead, that surgery has been the beginning of my own mental health journey and a very long, and challenging at times, journey to recovery.
During brain surgery I suffered a rare cerebellum stroke and when I woke, I couldn’t walk, write or do simple things. I also couldn’t see. Although this improved over the initial 5 days that I was in hospital, I acquired nystagmus, and oscillopsia, and now have the feeling that everything around me is constantly moving and nothing is ever stable. I had eye surgery in March to correct the double vision I developed and after 15 months of regular physio for the facial paralysis I also woke with, I’m now awaiting a 12-hour facial reanimation surgery.
As a 20-something living in London I just craved being young, free and independent again. In the early days, because of the visible difference I was now navigating, I withdrew a lot and avoided social situations. I knew this wasn’t me. But I quickly learnt that we live in a society that places a high importance on our appearance. The opportunities we have, and how we are treated by others, is a direct reflection on the way we look, and I became very aware and conscious of other people’s reactions.
I’ve always been a positive and strong person, and I think because of this a lot of people that knew me well were able to look past my visible difference, assume I wasn’t affected by it, and would say things like “I’m glad the tumour is removed and it’s all over for you now.” But the daily effects of facial paralysis and the isolation, fear and social anxiety that comes with it, meant that the journey was just starting for me. So, in March this year, I had my first therapy session.
The words strong, positive and inspirational are frequently thrown my way. And whilst, in some respect, I’m incredibly proud to be defined as these, they also do become a bit of a self-fulfilling prophecy. Up until March, my view was that a positive person wouldn’t seek help, nor would an inspirational person admit that they needed to release all the built-up tensions. I felt I would lose these titles if I admitted that, although my battles with mental health weren’t in the obvious forms of depression, they were in the restlessness, sleepless nights and impacts on my diet. Because of the way mental health is portrayed in the media, I didn’t fit the typical stereotypes of a “depressed'“person and feared how reaching out for help might be perceived. But I’ve since realised that it doesn’t always have to be as black and white.
Taking the plunge and seeing a therapist has enabled me to make sense of a lot of the thoughts and emotions I had built up following brain surgery. I’ve learnt that not everyone has to go at the same pace in life; it’s not a race.
Whilst I was learning to walk again, learning to write and how to use a straw and the escalators again, my best friends were out buying their first homes and getting engaged. It’s only recently that I’ve accepted that there is no pre-determined time to do things and we are all at the right stages in our own lives. This experience has also taught me that no matter what challenges or adversity life throws at you, you can get through it. You’re stronger than you think and a lot of the ability you require to deal with things, and build that resilience, stems from the thoughts you have towards different events, and your general world view, both of which are in your control.
It’s never too late to see a situation, no matter how painful or hopeless it seems, as an opportunity to learn or gain something from it. Problems won’t stay problems forever, eventually they will become lessons or insights or offer a new way of living. Your mind is incredible at adapting to things no matter what happens.
Your hardships don’t define you and you can still go on to achieve whatever you intend to. And asking for help, no matter how difficult it seems, is never actually as hard as we fear it’s going to be.
8 tips to stay positive during difficult times:
- Find a positive statement - put it somewhere you’ll see regularly and repeat it constantly (for me, wearing a bangle was the most achievable way of doing this.)
- Embark on expressive writing - write freely and for your eyes only to help make sense of your thoughts and feelings.
- Keep a gratitude journal or grateful list to focus on the many amazing things that do happen daily, and things that are great in your life, regardless of your current challenge or situation.
- Exercise! Even if this just means taking the steps rather than lift or getting off the train a stop earlier. Do it for your mind, and not aesthetics, as exercising will make you mentally stronger, confident and patient.
- Make a positive playlist featuring only mood boosting music that you can turn to when negative thoughts start to creep in.
- Start the day with a positive read not scrolling social feeds. For me, this includes The Daily Stoic & Don’t Sweat the Small Stuff by Richard Carlson. The passages in both are so short but I couldn’t start a day without these. They change your perspective in an instant.
- Adopt a bedtime routine - my sleep was so affected in the early days and these things have recently taken prominence to my own life again. Sip on a camomile tea as you wind down, limit screen time directly beforehand and read or colour before bed, but not in bed. Reserve your bed only for sleeping if, like me, you go through insomniac periods. This’ll help you brain start to associate your bed as a place to sleep.
- Keep a worry/thought notepad by the side of your bed. Something might just come to you in the night and keep you from relaxing. Rather than lying awake with these thoughts on your mind, jot them down and know that you can work through them tomorrow.
