When Lillian Cuthbertson takes to the ice at the Solo Dance Celebration it will not be a culmination of a hard-fought battle, or a next step on her path to recovery. It will simply be her new way of doing things, her life continuing.
Just 11 weeks ago she was unable to walk or even brush her teeth after a series of hospital visits that left doctors perplexed. She was eventually diagnosed with functional neurological disorder (FND), a condition that affects the way the brain and body communicate, and told to begin a process of retraining her brain.
Now she is back skating, with a level determination, positivity and resilience that is truly remarkable.
As she neatly sums up without a second thought: “As far as recovery goes, I don’t look at it as recovery. I just look at it as dealing who I am now.”
It all began on 3rd April when Lillian made her first visit to hospital for tonsillitis and quinsy, a rare abscess that forms on the tonsil. Five courses of antibiotics followed and it seemed that the infection was slowly disappearing. Not long after returning home Lillian fell ill again, this time glandular fever was the diagnosis so she was told to rest with yet more antibiotics.
Just a week later she was rushed back to hospital in an ambulance as her throat began to close and she developed pins and needles in her feet and hands. The next three days would be the toughest she had to endure in ward next to A&E. With people coming and going, the noise and commotion caused her symptoms, that now included tremors, to worsen.
She admits that she was so tired the endless visits and conversations with doctors did not really register. It was her mum, Susan, who was told the true extent of what was being looked for.
“They were telling me things that I don’t think they were allowed to. At one stage they were looking for Guillain Barre Syndrome, a brain tumour, MS or even early onset Parkinson’s. These were some really, really scary things.”
It was made more difficult by that fact a symptom of FND is that a person can become despondent and struggle to concentrate.
“It was quite frightening; my Lilli wasn’t there when I was speaking to her.
“When anyone starts forgetting things that you’ve just told them it’s very upsetting - it was scary.”
Guillain Barre was the main condition of concern due to Lillian's symptoms. This can cause gradual paralysis and even lead to death unless treated early. Thankfully that wasn't the diagnosis, but FND, that had been triggered by the original virus.
“I don’t think my neurologist caught on to my sarcastic jokes or my humour” Lillian smiles.
“They asked if I was stressed as that can be a cause, so I replied ‘well obviously, I’m a skater and a dancer’.”
The neurologist explained that FND was not a problem with the brain, ‘the hardware’, it was how the brain communicates with the rest of the body, the ‘software’, that was the problem.
So how, at 18-years-old, do you deal with being told that by a doctor?
“Once she’d explained that if I was distracted I could try to walk, or do things I said ‘this may be a silly question but I’m going to ask it anyway’…’what do you think will happen if I put my skates on?’
“As soon as I had the diagnosis I thought I would actually be ok if I could skate again, but not walk again. Which is so crazy but I genuinely thought that.
“I thought If I do have to learn to walk and skate again, why don’t I just learn to skate now rather than wait until I’d learned how to walk.”
This brings a gasp from her mum who was preparing the house for a new way of life: “At this point I couldn’t look at her skates, I was putting them under the bed.”
Lillian chirps in, “I don’t think anyone in my family thought I would skate again, but for me that was not an option.”
And that has proved to be the case. She was back at the rink within weeks, sitting with her mum to enter the Solo Dance Celebration on the final evening before the deadline. At that point she had still not been back on the ice.
She’s since been working with her coach Ryan Southan who rightly described her as a “fighter”.
“I remember during one of the first sessions she had a pretty hard fall” he explains.
“It took her a long time to get up, it really shook her up. Which is not like Lilli.”
It is just yet another obstacle that she has powered through with a level of enthusiasm that is infectious. She is using an Instagram account to help people understand her journey and raise awareness of FND.
When told that her story is remarkable, it’s the first time that she pauses to think. How will it feel competing at an event after the three months she has been through?
“There’s no pressure on me. I really just want to do it. Even if I just wobble onto the ice and can’t do anything for three minutes at least I was there.
“I’m trying to say that it won’t be emotional, but I’m sure it will be”
You can find more about Functional Neuroligical Disorder here.
You can find Lillian’s Instagram account here.
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