Growing up with a limb-difference in the modern era is a much different experience than, say, twenty years ago or more. The contrast in knowledge, research and methods to improve one’s condition has improved sporadically. For many adults, though, the surprise at birth and the daily struggle was very much unusual and learning how to deal with it was quite the task.
For Carol Hodge, these situations are very much part of her tale. Born in Scotland in 1982, the difference she was presented with wasn’t common to many doctors.
“So my difference is called Cleft Type Symbrachydactyly,” Carol told. “My parents weren’t aware of it at birth. My hand deformity was a complete surprise to them. It was like the tradition check at birth, ‘Okay there’s ten toes, oh-not ten fingers!’ It’s only relatively recent I’ve managed to talk to my mum about it in-depth. I think there was a lot of shock on her behalf and being quite upset, probably thinking it was something she had done wrong during the pregnancy or if it was something wrong with herself.
“Eventually we went in and I had lots of tests done, going to a hand clinic every year in Glasgow as I was born in Scotland. At the time the science there wasn’t at today’s abilities to know what had happened. We had it explained that a ‘gene had mutated.’ I think even to this day they still don’t know quite how these things happen. There’s a lot of theories around how it happens, I suppose.”
For Carol, despite what may have looked like a much different limb, the accessibility and use of her hand was very strong. Where many have had to undergo surgeries to assist a difference, Carol’s situation wasn’t so tumultuous.
“I think I’ve been very fortunate in that I’ve never had any operations and that I do have a lot of movement in my hand,” the Glaswegian-native explained. “I was in a documentary recently about musicians who have hand deficiencies and the editor had a nub hand too and had had a lot of operations to get to the point of being able to pick things up with it.
“Because I already had that movement, the same thing a lot of operations were aiming for, I didn’t have any need for one. Doctors from the clinic kept tabs on me over my early formative years, asking such things in list form such as am I able to write with it, fasten buttons, tie shoes. As I was able to do the above things, there was no real reason to get a prosthetic.”
Early years in school can be the toughest of times. Not only from questions, stares and standing out from the rest of the children, but the unawareness and lack of knowledge and experience in this facet from grown ups can also make it a touchy subject. The limb-different community and movement is such a new thing that, back in the 80s and 90s, finding information on this subject was like a needle in a haystack. Carol told,
“I think the sort of legacy of how teachers and adults in general treated me as a kid, it kind of gave me an overinflated ego because people just didn’t know what to do and didn’t know how to approach it. I think also, because was very bright in school as well, I kind of got too much praise for it. I was lead to believe I was really good at things and really special, but purely in an academic manner and actually did stuff to get that praise.
“I think the teachers were so concerned with not making a big deal about my hand that they put all their focus on something else with me. I mean, I remember there being certain points with me where suddenly someone decided to pick on me, but to be honest, I think I was a bit of a pain!
“Of course there were some occasions where I was bullied for it unfairly, but I’m sure there were situations where I was mean to someone first and they used my hand as a target in their comeback. I might be lucky, but I don’t really attach negative experiences to my hand. It wasn’t so much others giving me a difficult time as it was me trying to figure out how to deal with it.”
As many friends as you may make in the early years of your schooling life, moving to high school can reset and shock the whole system as you virtually start over once again. But from a limb-difference comes a strong mind and thick skin. Carol went into school unnerved about her difference and was ready for the challenges. Despite that mindset, there were some underlying, normal issues we’ve all been through.
“Externally, I was never bothered much about my hand,” Carol revealed. “I would always give as good as I got generally. I’ve never had a victim mentally. To be honest, I was kind of in denial about my hand during this time. I would hide it up my sleeve and wouldn’t talk about it. I’d kind of pretend it wasn’t there. I just had no idea how to deal with it as I didn’t know anyone with any kind of difference whatsoever that I could even begin to relate to. I was thick-skinned, which went a long way to help me.
“That’s what’s great about the organisations around today. There are people and places to go to in order to find people just like yourself and you can find them all in a click on the internet. It’s amazing.”
Carol later found her calling in life and that calling was teaching. As scary as school as a new student can be, it can be more so as a teacher. For instance, we’ve all been in school as a new teacher arrives and students put them through the ringer. It’s one of those things that has never changed.
A new teacher with a limb-difference? That’s a thought-provoking situation. In light of this, Carol experimented with methods as to how to address what would only become the elephant in the room.
“My thick-skinned helped me massively,” Carol explained. “I definitely wouldn’t have trained to become a teacher if I wasn’t thick-skinned. Still, there were thoughts about attention being brought to it.
“I experimented a bit with methods of how to approach it. I realised that the best way to deal with it was to say on the first day, be really chilled about it and be open to questions rather than let it linger. That has worked well for me. Especially as our British selves can be very introverted and super polite as to try not to offend the person in question.”
The path to self-acceptance can be a long, tough road. Carol admits this was the case for herself. Even today, she’ll still have days where she can’t be bothered with it and still want to hide it as that day Carol won’t want people looking or asking questions. We’ve all had these days – limb-different or not.
“The way I am, I’m quite an empathetic person,” Carol began. “With my hand I tend to feel that I don’t want other people to feel uncomfortable about it. I think I started my journey towards self-acceptance when I was doing my degree.
“I did my dissertation on freakshows and disability theatre, so I did a lot of research on not just the disabled performers themselves, but on how society viewed you in those times when you had such a physical difference.
“There was a sociologist once called Erving Goffman who wrote a really good book about facial disfigurement and the process that goes on when you meet someone with a very obvious difference and how we wonder if they know that you know. We intricately wonder if they know they have one eye or one hand and if we should say something to them about it.”
One of Carol’s biggest passions has always been performing on stage; whether it be playing an instrument or singing. This passion began at the age of fifteen. At first, Carol would hide it away as she feared it would distract the audience, but eventually as she grew as a performer and became more comfortable, nerves naturally settled.
“To start with, again, I think I hid it and wore long-sleeve clothing which was quite cool anyway, as bands like Nirvana and grunge jumpers were a thing,” Carol confessed. “When I first started out I don’t really remember it being a thing, but around eight years ago I started playing the piano in bands. I’d played piano for years, but never for a band.
“I started worrying that I would pull focus from the lead singer because the crowd had seen a weird hand wobbling about on the keys. I’m kinda conscious about it, but this past year I’ve been playing some house shows where I’ve literally been playing the piano in people’s living rooms.
“I’d say that’s the most intimidating in a closed room with twenty or more people around you, so I tend to just talk about it as in that small environment, you can’t avoid it,” Carol continued. “Generally, people are fascinated by how you adapt.
“Again it was just something I’d never really considered until the situation where people had messaged me saying they’ve got an eight-year-old girl who’s got a hand just like yours so I showed her you playing and now she’s inspired. I think that’s amazing and I don’t think you realise how, just by having a difference that we deal with everyday without thinking, how inspiring that can be to other people.”
One of the most amazing sights is seeing a limb-different person conquer what can be perceived by many as a herculean task, whether it be something athletic, physical or, in this case, an instrument. It’s a difficult task for anyone, let alone Carol. Nevertheless, the keyboard was her earliest musical asset, however she had always wanted to play the piano.
“For the longest time, I didn’t tend to do much with my left hand,” Carol divulged. “I had one of those keyboards that were big in the 80s and 90s where you hold a note down and it plays a rhythm, so I’d only have to hold one or two keys at a time. My teacher at the time also taught piano and I remember she left the room for a minute, so I jumped on the piano and had taught myself to play ‘The Entertainer’ including using my left hand as well.
“She came down and asked what I was doing on the piano, to which I apologised as this was a keyboard lesson we were doing. She was curious as to what I did before insisting we learn to play piano then onwards. I went from grade 3 in piano up to grade 7 when I was eighteen before I moved away.
“There are moments as many people know that happen where you just can’t do the whole thing and will have to come up with some sort of way to work around it. For instance I can’t play the whole chord, I can’t even reach some of the chord with my thumb on my right hand, so I’ll just have to play two notes instead of three and accept that.
“It’s an interesting process, but if you want to do something, just go after it.”
Nowadays, Carol continues to find herself teaching her passion of music that has not only taken her around the block a couple of times, but has led her to teach people from all around the world.
“After teaching in colleges, I went to work in television for a couple of years before working at The British and Irish Modern Music Institute (BIMM) which was things like degree courses and whatnot,” Carol told. “I still teach the odd exam at colleges when need be. I now also teach people online from all around the world how to play the piano. I’ve students who check in with me from Europe, Asia, America – all over the place!”
In this day and age, self-acceptance, self-worth and the mental aspect of life are all sensitive topics. The expectations that have been set from other generations, society and social media have made being yourself feel like impossible for some.
It’s safe to say Carol has had a challenge or two and has come out stronger. With that, Carol offers her advice.
“I think as you get older, you realise that life is lived one day at a time and that having your head in the future and worrying about things outside of that moment is kind of pointless. Another thing is not to be so hard on yourself. It is a hard thing what you have to put up with. No, it’s not fair. You are at a disadvantage that a lot of people don’t have to cope with, so let yourself get angry, let yourself be who you are with it.
“I think part of the problem is saying there is nothing different about you and that we’re all the same. There is something different about you. Don’t be too proud of yourself and recognise this truth to have those days where you wish you didn’t have it or don’t want it – it’s perfectly normal. We’ve all been there.
“What I’d totally recommend is something I found recently; let your social media be a ‘safe space.’ Say you have an Instagram account and every day you go on there and all you see are loads of really inspiring positive things – this is life in general not just the limb-different world – if you set yourself up for the day seeing people who are a like you, owning it despite any difficulties they might have, if you see positivity, you will be positive.
“You can turn any situation around. It’s okay to shed emotion, but don’t let the negative emotion beat you up. Remember what you’re grateful for. You might not have ten fingers like everyone else, but I’m sure there’s a hell of a lot of other qualities you have that everyone else wishes they had, too. Focus on the good and neglect the bad and you will do just fine.”
You can find Carol on Instagram and Twitter at @CarolxHodge. Like Carol’s story? Like/comment/share!