Tag: family

One operation, two operations, three operations, four…

One operation, two operations, three operations, four…

by elizabethmdouglas ♥ 0 Leave a Comment

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.

Not feeling it

Not feeling it

by elizabethmdouglas ♥ 2 Comments

Until yesterday, I wasn’t going to write a mid-week blog. Mostly because I’ve spent so much time with myself these past 52 days. 52 days man: I’ve not been outside in almost 2 months. (!) In fact, I have absolutely no clue what the country I’ve been living in for that time even looks like. If it’s past the view from the windows, then I’ve never seen it.

So the routine of my week kind of revolves around writing blogs now. But I’m only any good at this when I’ve got something to say, and how can I have anything to say when I don’t do anything? I’m trying to write down the things I talk about in my head, but I’m soooooo bored of hearing that little voice blabbering on all the time. I’d kinda like to hear someone else for a bit.

Lol didn’t manage it though, did I? Here we are, reading another instalment of that little voice’s monologue… ah well.

Quarantine has been a serious strain on the mental well-being of my parents and I. We never argue and we get along uncharacteristically well, so generally speaking we’re totally fine. We have a laugh and our issues are never with each other. But human beings aren’t built to be locked inside for months on end; it doesn’t matter how much they like each other.

Thankfully, me, my mum and my dad have somehow managed to alternate our breakdowns so none of us have been miserable at the same time so far. It’s not every day but every now and then, it just hits you. And whoever isn’t feeling like jumping out of the window on that day, gets the job of comforting whoever does. Lots of hugs, loud music, drunken dancing on the balcony, crisps and chocolate, Blue Planet, Judy Garland, sarcastic jokes. You know, usual family stuff.

But what I’m trying to get at in this blog, is that if you’re waking up some days feeling absolutely miserable then that’s a totally valid feeling to have right now. It’s a completely mad, upsetting time. It doesn’t matter how lovely your house is, or how amazing the people you’re locked in with are, sometimes you just can’t face another day doing the same thing, in the same rooms, surrounded by the same people, with no idea of when you’ll all be able to do something else.

I could end this with ‘hey, it’s mostly not that bad, let’s not dwell’ – a very true point. But there’s a lot to be said for allowing yourself a minute to just listen to some maungy music and bask in how crap you feel. You don’t always have to rationalise things; sometimes you just feel rubbish. And we’ve been stuck in the house for weeks with no prospect of an end date, in a world where the only news story seems to be how many people are dying. So if that isn’t an excuse to feel sad for a day, then I don’t know what is.

Xx

Sometimes I’m in a wheelchair

Sometimes I’m in a wheelchair

by elizabethmdouglas ♥ 0 Leave a Comment

Occasionally I develop a problem with my feet, and it can be as small as a blister or a cut but it almost always becomes infected. I can’t walk on it until it heals, and *POOF*: I’m in a wheelchair.

So…what’s that like?

Well obviously it differs from person to person. It’s also pretty impossible to generalise ‘a normal day’ of having an infection for me because: how did it happen? do I have the correct footwear? do I have enough footwear? am I at school? am I at home? am I at University? is it the holidays? am I still growing? have I just had an operation?- the list goes on.

Now is the longest time I’ve gone without using a wheelchair because I’m able to just avoid it since I don’t have school anymore. But so I can paint a picture for you, this is how it was during my last experience when I was 15 and I stayed in that bloody thing for 6 months:

I’d wake up, check my foot, take the bandage off and see what level of infected I was that day. Then I’d crawl into the bathroom – I can’t hop, my balance is non-existent lol. I’d do some next-level spider-man moves to get into the shower without allowing my infected foot to touch any surface, then I’d get washed. Finished, I’d have to carefully dry around the wound and make sure to not damage it further. Next, I’d have to dress my foot.

So I’d take out my medical kit, with all the specific products my feet require. I’d make a perfect bandage, ensuring that there were no creases in the entire thing because creases mean blisters and blisters are not my friend. It’s also important to mention that I don’t have any feeling in my feet, so infections don’t hurt: I recognise when my foot is infected simply by looking at it. So these bandages have to be perfect because the second I put my sock on, I’ve got no idea what’s kicking off down there.

NEXT, I’d have to get changed without accidentally catching the bandage on my clothes, or making it roll up once I put my sock on. Whenever it did catch or roll up, I’d have to start again. Then I’d slide down the stairs on my bum; hopping around the house using my zimmer-frame. (That’s right, I used to have a zimmer-frame, I’m cool.) My dad would bring my wheelchair into the kitchen and after my breakfast, I’d strap in. Once at school he’d push me to my friends and I became their responsibility for the day.

At every point in my life, all of my friends have become friends with me whilst I’m physically independent. So we’ve never started off with them being used to, or knowing what it’s like, for me to be in a wheelchair. Thus being in my wheelchair doesn’t just change my life, it changes the relationships my friends and family have with me.

Thankfully, my pals were mostly brilliant and loved the novelty of pushing me around. But we were children. So there were times when they were accidentally really unsympathetic or insensitive because they just didn’t know what it was like. Plus, they knew me out of the chair, so were used to me doing things for myself. This meant that sometimes they forgot that I wasn’t asking them to go and get me food, or to push me to the bathroom just to be annoying: I was asking because for that period of time, I couldn’t do it for myself.

And they also didn’t realise just how humiliating it felt for me to have to ask them to do these things. Even though I physically felt fine, since I never have any pain, all of a sudden I was overwhelmingly dependent on other people.

I’ve chosen to live a life where most of the time I’m so independent that I don’t seem disabled at all. And that has meant that in those moments when my Spina Bifida catches up with me, and all the actions I take behind closed doors to monitor it come into full view for the rest of the world, it’s just really hard to navigate.

It’s easy to say ‘I’m in a wheelchair, so everyone should be sensitive to that and help me with whatever I need’, but people are people, and you can’t tell them how they should or shouldn’t be. You can ask for help, but you can’t also expect them to fully comprehend something they’ve never had to experience before.

This is a part of my life that very few will ever know the full scope of because ultimately my disability is mine to deal with – not anyone else’s. My family and friends have always done their best to support me when I’m in my wheelchair, and their best is more than enough. And thankfully, being in a wheelchair is not a reality that I have to live in very often – but it does still happen. And even when it does I try and stay as chirpy as I am normally, because why make my frustration worse by spreading it?

After all, I’m one of the lucky ones: at least I always get back out of the chair.

International Women’s Day

International Women’s Day

by elizabethmdouglas ♥ 0 Leave a Comment

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.

Xx