9 minute read
"Life... be in it" with Tully Kearney MBE
from Rarity Life Issue 02
by Rarity Life
Tully was photographed by Ceridwen Hughes for Rarity Life
TULLY KEARNEY MBE
Tully Kearney is an athlete, a naturally gifted and hardworking swimmer who has not only won many medals in her time but has also managed to smash world records in the process. As well as her punishing training schedule she’s also studying for her Masters of Science in human physiology at Manchester Metropolitan University. In the 2022 New Year Honours, she was appointed a Member of the Order of the British Empire (MBE) for services to swimming. Add to the list that she is also a patron for Dystonia UK and an ambassador for Cerebral Palsy Sport and one thing becomes abundantly clear, she is a force to be reckoned with. Moreover, she has achieved all of this despite many incredibly difficult setbacks over the years, setbacks which she has repeatedly managed to overcome despite the odds.
Her family were living in Northern Ireland when she was conceived and so her parent’s chose a name to honour this, Tully means ‘peaceful one’ in Gaelic. After she was born her mum knew there was something not quite right with her, that she wasn’t like her older brother had been;
“Mum knew straight away from the minute I was born that there was something wrong but she didn’t know what it was. I couldn’t open my left eye for the first few weeks of my life and didn’t move my legs or use my left hand. Every time she brought it up to the health care professionals, they would just say I was a lazy baby and I just had to learn. I wasn’t actually diagnosed until I was about three or four. It was difficult because every place we moved to the different doctors all had a different opinion on what was wrong.”
Tully’s parents persevered, and eventually the family were given a diagnosis of spastic diplegia, which is a form of cerebral palsy. Cerebral palsy (CP) is an umbrella term for a group of neurological disorders or conditions which affects muscle control, movement and tone. It is caused by abnormal development or damage in one or more parts of the brain that control muscle tone and motor activity (movement), and because the areas of damage to the brain will vary in each individual, every single person presents differently. It is possible to have more than one type of cerebral palsy. Tully’s earliest memories of being in the water are not fond ones, she remembers that she hated her hydrotherapy sessions, and would refuse to engage with the process. Swimming lessons were more of the same, indeed Tully explained that;
“I would refuse to move and the teacher would have to come and drag me along. Because I just didn’t want to do it. I didn’t want to be involved.”
It was only when her Dad was posted to Canada and they had regular access to a pool that she saw that playing family ball games in the pool could be fun. Her Mum had been a national champion swimmer in her time, and although she was adamant that her children learnt to swim to keep them as safe as possible near water and she had no desire for her children to become competitive swimmers, knowing the dedication such a commitment takes. In addition, she was a very protective parent and was cautious about letting Tully do anything that might hurt her, at times treating her differently than her older brother. At eight years old she was therefore keenly aware that she had more limitations than him, and all she really wanted was to be able to do everything that he could do. One day her brother’s swimming coach approached her and her Mum and asked if she wanted to join in, perhaps usurpingly no one could have imagined just how pivotal that moment would turn out to be.
In swimming, she had found her place in the world, and is rightly proud that time and time again she has been able to prove that swimming is where her natural talent, and her true passions lie. She decided to try to take up swimming competitively after being inspired when Ellie Simmonds displayed her Paralympic medals at a school assembly. It is a brilliant reflection of both her innate abilities in the water and also her determination and ability to work hard that Tully was indeed selected to represent Great Britain for the first time in 2011 in international competitions when she was just fourteen years old.
Tully photographed by Ceridwen Hughes for Rarity Life
In her teens she started to show signs of developing dystonia, a progressive neurological movement disorder, and eventually received an additional diagnosis of generalised dystonia. But once again the path to getting a diagnosis was far from smooth and took over two years, a battery of tests and two specialist neurologists. Tully feels that this is in large part because
“My progression wasn’t normal and no one could explain it. When I was 14, I saw this neurologist that I’d been under for many years, and he thought I had so-called dopa responsive dystonia which could be cured with a dopamine supplement. Unfortunately, I don’t have the dopa responsive dystonia and it didn’t work. I was told it was all in my head and I was exaggerating. He discharged me from the neurology service, and I was just stuck.”
Eventually, by being transferred to adult services she was able to see a specialist. It was then she found out the diagnosis of generalized dystonia;
"With Dystonia there is a link between the conditions. A lot of people with CP have it. There is also a link to trauma, brain injury and dystonia. I know people that have had a brain injury and have gone on to develop dystonia."
Tully photographed by Ceridwen Hughes for Rarity Life
Similarly to cerebral palsy, dystonia can have different types. The four main types are generalised dystonia which affects most or all of the body, focal dystonia which affects one part of the body, multifocal dystonia which affects two or more unrelated parts of the body and segmental dystonia that affects two or more adjacent parts of the body. “I have generalized, it affects my whole body.” Tully explains, “I also have elements of fixed dystonia. I have some muscle contractures, which restrict my range of movement.”
In the world of competitive swimming, swimmers with a disability are separated into three disability classes; physical disability, vision impairment and intellectual disability. Each athlete is then further classified, and swimmers with physical disabilities are ranked from 1 and 10, with 1 being the most impaired and 10 the least. These classifications are governed by the International Paralympic Committee, and when she first began competing Tully was given a S10, SB9, SM10 ranking. Over the course of her swimming career her highs have been offset by some truly difficult lows, with her many medals and awards often followed by periods of rest and rehabilitation following injuries, or the progression of her dystonia. Tully went on to be selected to swim at the Paralympic Games in Rio in 2016, however, she was dealt a truly devastating blow when an unexpected and rapid progression in her dystonia, meant that she had to withdraw from the games, just two weeks before she was due to fly out. Tully was told she would never swim again.
Despite immense difficulties she did not give up. Instead, she relied on her inner strength to pull her though, to get her to a point where she could slowly rebuild her body and her strength. Even though it must have been incredibly hard she learnt how to swim again, and discovered what her body could still do in the water. Due to the nature of her progressive disability Tully now competes in the S5, SB4, SM5 classification. True to her motto “life… be in it” she showed the world just what she is made of when she not only won Gold and Silver at the Tokyo 2020 Paralympic Games, but also set new world records in both the 50m and 100m freestyle in the process.
For Tully swimming was a central way to look after her emotional and mental health. In the dark periods where it looked as though she might never swim again she remembers thinking
The outlet Tully found was always going to be some sort of sport, and so her introduction to the world of frame running began. Frame Running (formerly known as RaceRunning) is an adapted sport for those who cannot functionally run and rely on sports aids for mobility and balance. The actual frame runner is a three wheeled frame where the athlete is supported and propels against the frame using their feet, and steers using the mobility within their hands and/or arms. Whilst frame running was, and is not always easy on Tully’s body, it fulfilled her need to move, and helped keep her positive;
It is Tully’s positivity, her inner strength and her sheer determination that are truly a gift. Whilst most of us might know deep down what we should do, as and when life becomes hard for us, all too often we don’t do it. As Tully herself said;
