Sammy's story

I was 15 when I first started experiencing dizziness, spinning vision and nightly head rushes. By the age of 18, these dizzy spells became monthly occurrences, and I went to the doctors. They sent me for an MRI scan to ‘rule anything out.’ But that’s when they discovered a benign brain tumour.

I was told it was low-grade and had probably been there since birth. It wasn’t cancerous and for a long time they didn’t even call it a tumour, referring to it as a “lesion in the fourth ventricle.” I was put on a watch and wait plan with yearly MRI scans and told that I’d be discharged in 2018. But as genuine luck would have it, that “final” scan showed that the tumour had doubled in volume and was dangerously close to blocking the cerebrospinal fluid (CSF). The best solution would be to biopsy the tumour to assess the true grade and remove as much as possible.

In June 2019, I had brain surgery but as soon as I woke, I couldn’t see or speak and knew something was wrong. I’d fallen into the 2% risk of suffering a cerebellar stroke, affecting my vision, mobility and resulting in permanent facial nerve damage.

I embarked on a long road to recovery, learning how to walk, write and feed myself again with daily physiotherapy. During this time, I founded my own brand of motivational quote jewellery, t-shirts and stationery that donate a percentage of profits to charity. Not only did every aspect of running a business aid my recovery – from handwriting labels to strengthen my weak right arm, walking to the post office and improving my cognitive function by writing blogs – it also gave me a real purpose by connecting to others, sharing experiences and holding on to the belief that life could still be wonderful even without following the original plan I’d created.

In 2020, I had two further eye surgeries to correct my double vision and to insert a weight in my eye lid so I could blink again. I also became the first person in the UK to have a pioneering facial reanimation surgery that has helped restore some movement to my face. I still struggle with balance and coordination as a result of my tumour being in my cerebellum. I also have permanent nystagmus and oscillopsia, meaning my eyes make involuntary movements that give the illusion that the world is constantly spinning. Because of this, I no longer drive and was forced to have a career change into something that requires less screen time.

Recovery was the hardest part for me. My friends were all at very different stages to me and I constantly felt behind relearning the basics again while they were getting married and buying houses. I also had to learn the hard way just how much emphasis is placed on looking a certain way or fitting a beauty standard in our society, especially in the age of Instagram.

But overtime, I got out of the comparison trap of seeing and envying what others my age were doing on social media, and began focusing on my own path, realising that everyone goes at their own pace in life. I kept reminding myself that I wasn’t behind in my life, I was simply living a new path and going at my own speed. And I became much more accepting of my situation.

I’m more focused on the person I’ve grown to be on the inside and the exciting new opportunities I’m faced with, as a result of this challenge. And I’m now on a mission to share that with others to support them in their own journey of challenges.

Sammy now runs South East Social, a peer support group for people living with a neurological condition in the South East of England. This is a safe space to meet others with shared experience. To register to join the group, click here. 

Sharing your story helps drive positive change for people affected by neurological conditions. We like to share the experiences of real people who are using, fundraising or volunteering for our services to help raise awareness of neurological conditions.

There are many ways to share your story with us – in written format, as a video recording or an audio recording, we even have people share their story through artwork. It’s up to you which you most feel comfortable with.

To share your story, get in touch with us. We’d love to hear from you.