After nearly 30 years of living with epilepsy, Maria Domsova thought she had experienced it all, from relentless childhood bullying to being robbed of her mobile phone as she lay unconscious in the street. Then a massive seizure led to a terrifying mountain fall that she says “destroyed” her life.
Last October, Maria was visiting her parents in Slovakia when the family decided to go walking in the High Tatras, a mountain range that sits on the border of northern Slovakia and southern Poland.
“We were 40 metres from the summit at an altitude of over 2,000m,” recalls the 36-year-old of the moments before her world changed. “It was really beautiful looking down at the country and feeling the power of the surrounding mountains.
“But after that I have a hole in my memory. The next thing I remember is waking on the ground with people gathered around me, frantically dialling the emergency services. I was full of pain and covered in blood and had no clue what was going on. Someone told me I had rolled 10 metres down the mountain.”
The seizure had sent Maria hurtling down the mountain, her body bouncing off jagged rocks like a rag doll as her parents looked on in horror. Miraculously, her fall was broken by a small group of conifers in the middle of an otherwise barren landscape. Beyond the trees was a steep drop over the mountain’s edge.
“I owe my life to those conifers,” says Maria, who has lived in London since she was 20. “After them there was nothing.”
In excruciating pain, Maria was airlifted to hospital, where medics diagnosed dislocated fingers, concussion, damage to her vision and deep lacerations to her face. At the time, she felt she had got off lightly: “I knew I was lucky to be alive,” she says.
But it soon became apparent that the damage to her fingers would be life-changing. Since childhood, Maria had found playing the violin and painting were valuable outlets for her, helping to take her mind off epilepsy and express herself creatively. But five months on from the dramatic fall, Maria has been unable to resume these lifeline hobbies.
“When I came home from Slovakia, 10 days after my accident, I was referred to St Thomas’ Hospital in London. The doctors told me that one of my fingers won’t ever be straight again.
“It’s important to exercise and use it as much as possible, but I really feel this has destroyed my life as I can’t hold a violin bow and I can’t paint any more.”
The accident has also left Maria with problems with her vision and hearing, caused by the impact of striking her head against the rocks. “I have blurred or double vision,” she says. “When I hit my head, it also affected my hearing and my epilepsy became worse.
“I also have scars that won’t disappear. There are some visible on my face, but the invisible scars inside me will need some time too.” Maria was diagnosed with left temporal lobe epilepsy at age nine.
This type of epilepsy can result in intense feelings of panic or fear and sometimes leads to a loss of awareness. She and her family found things challenging after the diagnosis, and Maria was forced to change schools twice due to relentless bullying.
“As a child, I couldn’t describe how I felt, I didn’t know I had epilepsy. I would get a feeling of fear and begin crying. I would run to my parents and want to be held.”
As an adult, Maria has continued to experience strong seizures, including focal aware seizures which can include confusion and a loss of awareness.
Often she is affected by blurred vision and a sense of deja vu. As her seizures have no known triggers and no warning signs to alert her that something is about to happen, she can’t take evasive action.
In 2020, before her accident, doctors even considered brain surgery to control Maria’s epilepsy. However they decided not to go ahead as the operation came with the risk of Maria losing 60 per cent of her vision.
Since her fall, Maria has been experiencing seizures every other day as doctors continue to struggle to find an anti-seizure medication that works. This means the impact of her condition is felt through all aspects of life. She can’t drive and even cooking dinner is fraught with danger if she is alone. “If the hob was on and I collapsed, it could lead to a fire,” she says.
Maria, who up until 2019 worked as a carer looking after people with Alzheimer’s, Parkinson’s, cancer and dementia, and was formerly a teacher in a private bilingual school, now struggles to find work as her seizures are uncontrolled.
“People judge those with epilepsy, they do not understand what we go through,” she says.
Having lived in the UK for 15 years, Maria has built a great support network of understanding friends around her. Yet, as she has discovered, strangers’ reactions to her seizures can vary greatly.
“It really hurts me that some people have no understanding of this disability,” she says. “For example, someone stole my phone while I was having a seizure on London’s Oxford Street last year,” she recalls.
“That said, there are also some wonderfully kind people who understand epilepsy. A few days later, a woman saw me lying on a zebra crossing and got out of her car, checked me over and called an ambulance.
“How is it possible that in the course of just a few days on the streets of London, a person having epileptic fits should find themselves with such different experiences?”
Yet despite the prejudice, the injuries and the frequent trips to hospital, Maria is determined not to live in fear or let her epilepsy control her life. “I don’t like to put limits on what I can do,” she says. “For example, a few years ago I wanted to volunteer to work with children in Nairobi, but the agency said they didn’t have cover for epilepsy.
“I didn’t take no for an answer and just decided to book a flight and go myself. I’ve now been over six times to work with children from the slums in an art centre, where they can study art for free.
“I don’t want to limit myself because of my disability. I hate when people look at those with epilepsy as if we have less value because of the condition, that we should have fewer opportunities. Instead, I try to do everything I can. Only you can determine what you’re capable of.”
This Tuesday is Purple Day, the international day for epilepsy. Sign up today to bake something purple, wear purple or come up with a challenge of your own to raise funds for the Epilepsy Society. Find out more at epilepsysociety.org.uk/purple-day
