For teenager Tilly Lockey losing both hands was not the tragedy people might assume. But other’s perception of her affected her confidence growing up. Despite the challenges Tilly wouldn’t change her circumstances for anything
“If I could go back in time and change what happened to me and not lose my hands, I wouldn’t. I truly believe it has shaped me as a person and taught me so many lessons.”
For limb loss awareness month we asked Tilly Lockey to reflect on the impact and outcome of losing both of her hands as a baby.
Many readers will remember Tilly’s amazing story. She miraculously recovered from meningitis and septicaemia after nine blood transfusions when she was 15 months old. Due to the damage to her body caused by septicaemia, Tilly had to have both her hands amputated.
Limb difference and limb loss awareness month focusses on increasing self-esteem and wellbeing for the limb different community. Tilly tells us how the assumptions of others affected her and how she is regaining the confidence and determination she had as a child.
Tilly uses Hero Arms, advanced functioning prosthetic arms that allow her to multi-task and feel empowered, but she wouldn’t change her limb difference – it made her who she is.
How did your limb loss affect you as a child?
Tilly says, “At first, I struggled with it, but only physically. I would always ask my mam for help with things even if I hadn’t tried myself. She always recounts a time where I wanted to go into another room at home but didn’t think I could open the door by myself. When Mum asked me why I couldn’t do it I threw a little tantrum and shouted it like it was obvious, “I have no hands!”
“Mum has taught me so many lessons - I realised my lack of hands didn’t actually need to stop me and I still could accomplish things. Since then my mindset has only been determined and tenacious.
“Mentally, I was never too fussed by my limb loss as a young kid. It didn’t make me sad or imagine what life could’ve been like at that age. I think that’s down to the way my family always treated me as an equal and were so encouraging all the time.
“I never felt the need to find other people or children like me. The way I looked at it - some kids have brown hair, some blonde, some kids have hands, I don’t. The frustration only started to kick in when I realised it was a bigger deal to other people.
"At school and nursery, or on trips to the park where there were lots of other kids around, came with a lot of stares and questions and in turn a real sense of abnormality for me.
“You can’t blame them, it was probably the first time they had seen somebody missing parts they thought everyone had, but the mental toll that it took definitely started then.
“It got worse through my older years at school. I never had a sense of shame or anything though, I want to highlight that. I was never bullied or made to feel bad at all, but it was this growing frustration that I couldn’t do what other teens could do without getting stared at in the corridors, plus all the assumptions that come with having that sort of physical disability.
“For that reason I spent a large portion of my life with my sleeves rolled down, making a conscious effort to at least be able to cover up should I wish at any point, even the hot summer days when you really wouldn’t want to. This goes for scars too.
“I had meningitis septicaemia and I didn’t get away without the scarring. I have it all the way down my legs and during the last years of primary school and in secondary school it really bothered me. I wouldn’t let anyone see.
“Today I’m genuinely way better with it but only recently. It was just last summer where I went out publicly in a dress with no tan tights to at least blur my marks. And that was a huge, huge thing for me.
“I honestly think the strongest and best I’ve ever been with it was when I was in my early primary school years and it makes me happy to be taking the steps now to get closer to the way I was in my younger self.
“It’s come full circle which is a really beautiful thing. I still need to learn many lessons from little Tilly.
What are the tricky things been about living with limb loss?
“Physically some things I struggled with were fine motor tasks like tying shoelaces or really small fiddly buttons. Tying my hair up is a massive one which I’d die to conquer as a teenage girl!
“Mentally it’s been the effect of the stares and the assumptions which, let’s face it, are usually negative. Since I knew people had these assumptions of me and what I was capable of I’d put so much pressure on myself to make no mistakes and be pretty much perfect.
”This got worse as I grew up because I felt everything I did had to be perfect in order to avoid people putting me in a box and it played on my mind a lot. It still does.
What are the positives of limb difference for you?
“Some people might think, ‘Don’t be stupid a missing limb is a tragedy not a positive.’ I see that point of view completely - it is a set back after all.
“But if I could go back in time and change what happened to me and not lose my hands, I wouldn’t. I truly believe it has shaped me as a person and taught me so many lessons; resilience, determination, acceptance, gratitude, the list goes on.
“There’s also no way I’d be doing what fills me with so much joy now - helping develop the best bionic arms possible for limb different people all around the world, and benefitting from that technology myself first-hand (mind the pun!)
“I’m able to express myself and reinvent the history of tragedy in my past into a sort of redemption story for the future.
“I fully believe that we will get to a point where prosthetics are not only a match for human hands but, perhaps, even better! That’ll come with time, but it’s exciting nonetheless!
How has your life changed since you got your Hero arms?
“Where to begin?! My life has changed DRASTICALLY since the hero arms. From initially being given a glove that masked my difference, to now wearing the hero arms (which I decorate with glitter) times have changed for the better so much.
“They help me physically, with things like multi-tasking. Being a double amputee, I always had to do things with both arms to have any sort of grip. Whereas now, I can pull a suitcase and drink a hot chocolate at the same time, read a book while eating some crips, carry more than one thing at once.
“Physically it has made me twice as efficient, twice as quick and I appreciate that so much.
“When it comes to the impact mentally, that has just been out of this world. The first time I put the arms on when I was nine years old, I remember feeling instantly empowered, powerful and confident - they were only a prototype then and still the same effect today.
“It is like a reinvention of the trauma of losing my hands in the most beautiful, strong way. Hero arms make people feel good about their difference and the best part is, it’s only the beginning of the bionic opportunities for people with limb difference.
What would your message be to children learning to live with limb loss?
“I actually have two messages I’d like to give to children learning to live with limb loss. Firstly, don’t ever think for a second that because you have this set back you can’t do what you want to do.
"It depends on the task, but I promise you one thing; even if you can’t do it the way your peers do, there is always a way and adaptation is incredible. With the right mindset and tools, if you need, you can do anything.
“Secondly, I’d say don’t be afraid to be how you want. Dress how you want, wear a prosthetic or don’t wear a prosthetic. It’s not your life if you’re constantly worrying about other people and this is something I’m still trying to learn too. We’ve got this!