support – An Indelible Friend

If you’re an avid reader of my blogs, then it’s likely that you’ve seen me mention that I’ve had six operations because of my disability. But what’s funny, is that a lot of the time when I say these things about my lived experience with Spina Bifida, what I’m actually doing is repeating the speech I’ve always known as how to explain my disability to others – I’m not really thinking about the words I’m saying. For instance, it might surprise you to know that even though I talk about being disabled quite regularly, there are plenty of days when I almost have to remind myself that I have Spina Bifida. This is because the details of my condition and the way they physically ‘affect’ me aren’t constantly on my mind. But the times when this dissociation from my own disability gets the weirdest, is if I sit and properly think about my operations.

I had my first two operations when I was a baby and if I’m honest with you, I’m still not entirely clear on what they were for, what they were called, or how the procedures actually went. My basic understanding is that the goal was to drain some of the fluid in the lump on my back using tubes; I know they didn’t really work, and I know that I’ve still got a small plastic tube in my stomach because the doctors didn’t want to cause me any more trauma by making me have another operation to take it out. So, I’ve got a completely harmless plastic tube inside of me. Which (when I think about it) is weird, right?! But I don’t remember those operations, I just remember always knowing that that tube is inside of me because I can see the scar.

My next operation was on my right foot. My parents have told me that as a baby my feet were actually fine, and it was only when I started to walk (I think), that my right foot started to curve inwards so that I wasn’t placing the pressure where it should go and we started having some issues. Hence I had an operation to correct the positioning called a tendon transfer where they move a small piece of tendon from one side of your foot to the other to basically stretch it in a different way, so the bottom of your foot lies flat on the ground as you walk. (It’s difficult to explain in words…you might just have to google that one to get a visual aid). And again, I don’t remember being involved in the operation, but I know that I was because I can see the scars.

My final three operations were on my left foot – affectionately named by one of my best friends as the ‘attention-seeking foot’ because this little bugger has rarely stopped giving me grief since it decided to copy my right foot and curve inwards. The operations I had on this banter wagon were exactly the same as the one on my right foot, the only difference was that it took three tries (classic) because the first one got infected so you could see the bone from the outside, then the second attempt flopped, and by the third go, I had no more tendon left to transfer so it was less that the operations had ‘worked’, and more that my lovely surgeon had done the best he could. – He did kind of nail it tbf. I was in a wheelchair for 18 months during this part of my childhood.

What’s odd though, is that the time when I had these operations isn’t really something I recognise as my life because it all just sounds so medical. Obviously, I know that it happened because I’ve got scars and medical records to show for it, but I don’t ever remember thinking of myself as this regularly hospitalised child. Although, that isn’t to say that I don’t have memories of being in hospital gowns, and spending months with nurses coming to my house to dress my foot every day before I got in my wheelchair to go to school, or how the fever felt when my foot was so infected that the bone was visible. I remember all of that viscerally. But when I see the home videos of the little girl stumbling around, walking faster than her Spina Bifida feet could carry her, it’s difficult for me to watch because that level of blatantly obvious physical disability isn’t me in my head.

It goes without saying that I have my parents and my big brothers to thank for this, because if they’d ever brought attention to just how pronounced my disability was in my early childhood and restricted me according to that, then I wouldn’t be what I am. But then the funny flipside of being brought up this way, is that seeing images of little me limping around after my big brothers is bizarre and in some ways a little upsetting because oh my god, that’s me. I’ve heard all these stories about it but look! Look how much I couldn’t walk.

Still, in these same photographs, videos, and hazy memories of when my body was showing the purest form of my Spina Bifida, I couldn’t have cared less about it. This was also aided by the fact that no matter how bad my feet are, I never experience any direct pain because I don’t have any feeling in either of my feet. Therefore, infection or not, limp or not, I ran and explored as much as any other four-year-old did and the idea that I was ‘disabled’ was totally irrelevant to my experience of life. But my brain will always be wired this way, so it can get strange sometimes when I realise just how disabled I actually am.

In the spirit of International Women’s Day, I thought I’d dedicate a blog to all the strong women out there in the world. So to all my male readers: I’d really like you to read this one.

It’s no secret that I adore men. I grew up in a male-dominated household and will always have a huge part of me which craves attention and friendships with men. So that makes it even more infuriating when I speak about the struggles I face as a female in this world, and people think I’m attacking men. I’m not attacking men by being a feminist, I’m asking them to agree that we’re equal: I’m asking them to love and respect women, as much as I love and respect them.

Sexism is a word that has become trivialised and made into a joke. Feminism is brushed off as ‘crazy’ women growing out their armpit hairs, burning bras and hating men. But sexism exists everywhere, and feminism literally just means that the sexes should be equal – one shouldn’t be perceived as superior to the other. So, if you don’t identify as a feminist then you think that women aren’t entitled to the same rights and respect as men – and if you think that, then seriously, what century are you living in?

No matter your gender, you’ll face various struggles and moments of prejudice in your life – but objectively speaking, you’re already lagging behind if you’ve come into this world as a woman.

We have so many things we have to rail against when it comes to just existing: our bodies, our minds, our emotions, our successes, our failures, our opinions, our desires, our words, our clothes, are all subject to scrutiny and judgement on a day to day basis. And the fact of it is, if we were seen as equal to men in all respects, then every single human on the planet would benefit.

Just think about it: if women weren’t ridiculed for being over-emotional, then would it be so taboo for men to talk about their feelings? If women weren’t objectified sexually and encouraged to be passive, then would men always have to be strong and dominant? If both of the sexes were treated as equals, then how much time and energy would we save on not having to have this conversation over and over?

I’m 20 years old and I’m already bored of it; I can only imagine just how bored women and men who’ve been feminists for years are by now. However, regardless of the obstacles I face living as a young woman, I will always be proud of my gender.

I was lucky to grow up in a household where both of my parents chose to raise 4 feminists: 3 boys and 1 girl. If anything, my brothers got the most attention when it came to that because my parents knew that raising a feminist daughter was important, but not as important as raising feminist sons. No matter what I do, or how proud I am to be a woman, my gender dictates how much respect I’ll receive in the wider world. In order for the genders to be treated equally, unfortunately it’s the men who have to make the most noise: they’re already more likely to be listened to.

So when you see things talking about ‘International Women’s Day’ or ‘Feminism’, they’re not just directed at the women. Women AND men should love, respect and celebrate each other as much as possible, then maybe we’ll get somewhere.

Let’s affect some change boys, and trust me once we’ve done it, we’ll all feel better for it. But can we do it quickly please? I’m getting kinda antsy over here.

An Indelible Friend

Tag: support

One operation, two operations, three operations, four…

International Women’s Day