After recovering from brain cancer at 29, Suzanne’s life was forever altered by ataxia, a rare neurological disorder. But she refuses to be defined by her limitations, in her own words.
life before ataxia
Suzanne was like most twentysomethings – bright, confident and hopeful, always wearing a smile and never a cross word. Working as an internal communications specialist, she was widely known and universally loved by all at her company, from CEO down. “I was a healthy person working and living in London. I didn’t smoke or drink much. I probably didn’t do too much exercise,” she admits. “I was happy. Had graduated from Warwick University. I had worked in New Zealand and travelled to Australia and India. I had moved to West Hampstead, in London, with my boyfriend. My brother and his girlfriend were living nearby and my parents were a commutable distance away. I had career prospects, a lovely home, and a great job at ACCA (The Association of Chartered Certified Accountants).”
Then, in late 2007, Suzanne experienced a complete upheaval in her life. After a series of unexpected seizures running up to Christmas, doctors diagnosed her with brain cancer. They found a malignant tumour in her cerebellum, the part of the brain responsible for co-ordination, balance, and movement. After diagnosing her with brain cancer, she was immediately admitted for specialist surgery, which removed 95% of the tumour, followed by six weeks of intensive radiotherapy. Her prognosis was unknown at the time as the tumour was rare for someone her age. No one knew how long she would live, but probably not as long as her peers.
“I recall little about this time,” she admitted. “I think your memory shuts down during periods of trauma. I can’t even remember friends who came to visit. My dad was very worried, as his brother had died of brain cancer several years before. I remember crying whilst going for a scan, as I was so confused as to what was happening to me. I vividly remember the last time I saw a consultant before being discharged. He asked if I had any more seizures yet.’ The word ‘yet’ implied I would have more in the future. He obviously didn’t understand the power of his words, but I remember them to this day.”
By March 2008 Suzanne had returned to work, began studies for a Postgraduate Diploma in Internal Communication Management. For over a decade, she would enjoy the normality of life’s typical challenges, completing her studies, buying her own home, the heartbreak of a breakup, falling in love again and planning a new future. “I felt normal again, with no seizures. I wasn’t worried about the brain cancer as it was being monitored regularly. It crossed my mind occasionally and I would suffer from the odd panic attack at night when alone, in case of another seizure.”
Then, in 2019, Suzanne began experiencing new symptoms. “I started to lose a little stability on my feet, falling over occasionally, perhaps three or four times a year. I paid little attention to it at the time. I thought I must be getting clumsy or need my ears testing. In hindsight, I recall I was instinctively holding onto friends going down steps, so I didn’t fall over.”
Turning point
By January 2020, Suzanne’s balance declined rapidly. “I was falling over much more frequently. A couple of times I hit my head badly. I realised I couldn’t walk as I did before. I would do things like fall out of the car. I even fell out of the train once and became scared of getting on and off transport. One day I fell over outside our office and colleagues had to help me. It was mortifying, as I didn’t know what was happening to me.”
As ataxia took hold, Suzanne reached a critical juncture. “I split up with my boyfriend, as it was obvious that I needed more care. We remain good friends to this day. I moved in with my mum for 18 months. I had to have carers in daily to help me shower and dress. I had many accidents, falling down stairs and slipping in the shower.”
In 2020, Suzanne couldn’t see her oncologist due to the pandemic. It wasn’t until one year later that a clinician referred her to a specialist who diagnosed her with cerebellar ataxia, a rare condition caused by a long-term complication from the cancer, neurosurgery, and radiotherapy. When I was diagnosed, there was no leaflet explaining ataxia or what to do. It was like going into the unknown. I wanted to know more! What does it mean? How can it be cured? Having a condition that is progressive is terrifying but I can’t think about that now. You have to live your life day by day.”
At present, there are around 10,000 adults and 500 children living with the condition for which there is currently no cure.
When talking with Suzanne, you see occasional unguarded moments when an anguish that shadows her extraordinary fortitude reveals itself. She will momentarily look away after recounting something, her expression a silent bewilderment at the injustice mixed with a muted determination to find both normality and meaning. “To have a rare cancer, followed by such a rare condition, I do wonder why this was happening to me and what I had done to deserve this. No one knows how hard it is to live with the condition but you.
“It would be wrong to say my life hasn’t changed significantly. Before, I was an independent person, with good career prospects and a great social life. Now, I am no longer independent.
“I don’t feel anything unusual if I’m sitting down. I feel like I used to. It’s only when I get up I realise I need my walker, otherwise I could fall and injure myself, which is the only time it’s painful,” she concedes as she rails against her loss of agency. “I do suffer from cabin fever, being trapped in my flat. It’s an unbearable feeling, which I have never experienced before. I can’t just pop to the shops, so I now shop online. I can no longer clean, so I have a cleaner.”
Suzanne has become much more risk aware, having to plan simple things like moving around her apartment. She always wears her personal alarm and uses Alexa to contact neighbours or emergency services if needed. “I have also become a better problem solver, as every day seems to present a new challenge. If I go down the street, I have to go with someone in case I fall. I have to look for low kerbs so I can get onto the pavement. Imagine if you were in your forties having to look out for low kerbs,” she recounts in her own dry way at the daily fight with a loss of strength, dexterity, and freedom.
While the physical symptoms of Suzanne’s ataxia create daunting challenges in her everyday life, mentally she is as lucid and sharp as ever. She remains persistent, consistent, ordered and always generous with her time, kindness, and patience, although she has also been forced to adapt to more minor irritants such as the inadequacies of other’s coping and response mechanisms. “When people say things like ‘bless you’, I know they mean well, but I find it patronising.”
However, where she finds real frustration is the challenge of finding work, despite being a highly capable communications professional. “I’ve had part-time contracts, based at home, which have been rewarding and given me the opportunity to use my skills and keep my mind active – my brain still works. I only struggle when a role requires going to the office. I generally get to the interview stage, but when I have to say that I cannot travel, I get rejected! Believe me, I would love to be back in an office, but can’t due my mobility issues and just want the opportunity. I prefer to work and just want the opportunity. In the meantime, I am doing some voluntary work from home to keep active, which I will continue when I get a new contract.”
Fighting back
When you spend time talking with Suzanne, she emanates resilience and acceptance in her very English way – mild mannered and ‘bright side of life’ with a subtle hint of self-effacing humour.
“I am going to a local rehabilitation gym weekly – it’s something that puts me in control! My exercise regime includes things like walking in long strides with a stick, riding a static bike and lunges. I am determined to walk again, even if it’s with a stick.”
Suzanne is also learning to swim again, which is something else you need your balance for. She goes to the local leisure centre once a week where she receives one-to-one support. Swimming is considered key in symptom management and rehabilitation. The sensory feeling of the water also helps to enhance proprioception and body awareness. It also provides a temporary respite from the physical constraints of gravity. For a moment, she is not defined by any limitations. She is simply someone learning to swim again and reclaiming a piece of herself that ataxia can’t touch.
“You are much freer in water and the pool is also great for stretching.”
As well as requiring high dexterity to maintain balance in the pool, the buoyancy, and resistance of the water makes it easier to practice co-ordination. “For me, it’s about learning to swim again. If you break swimming down, it’s a mix of coordination, balance, and stamina – oh, and making sure you breathe.”
Suzanne does face several new challenges in the water.
“I start by doing exercises to engage my muscles, such as touching my feet against the pool wall, which is actually quite difficult because of my poor co-ordination. When I’m swimming on my back, the instructor has to help me stay on course as I rotate a lot, due to an disengaged core. I have to concentrate, which is tiring. And my ataxia does not like extreme temperatures, so if I shake due to the cold, I get out.
“I generally feel more confident holding the handrail, even though I know rationally I can’t hurt myself. I submerge under water to train my brain again to feel safe, which is quite scary to be honest. But by going regularly, I build back my confidence. This week was better than last week was better than the week before
conclusion
Despite the immense challenges she’s faced, Suzanne maintains a stoic resolve. She chooses not to dwell on the journey of defeating brain cancer and adapting to life with ataxia. She embraces each day with unwavering determination, even knowing that a cure remains elusive. “I have a positive outlook,” she affirms, “and didn’t want any regrets. I am grateful for the support of my family and in particular my mum, who has been on this journey with me, my friends, and neighbours. I also love to visit the National Trust’s Stowe Gardens. It’s beautiful and has electric scooters you can use and go around feeling free – and of course they serve delicious cake,” she says in that very English of ways.
My Manifesto
My truth: Having ataxia wasn’t my choice but I am still the same person.
I remind myself: No one else knows what it is like to be you, so be kind to yourself.
I learned: Be resilient. You will get there.
1 rule to live by: Treat others with respect and how you would like to be treated.
1 rule I work by: Everyone can contribute and make a difference.
