Film Club | McQueen

I watch a lot of films and documentaries but I don't really talk about them much on here - however, I feel differently about McQueen, partly because of still seeing people say 'But wasn't Alexander McQueen a misognist?' (yawn, yawn) and mostly because I just love him.

The documentary is a celebration of his genius but it's also a grim reminder of the pitfalls of fame and the pressure of the fashion world, set to the backdrop of a beautiful score - a mix of interviews, home video footage and news reports it's composition isn't too dissimilar to Amy. I'm a huge fan but I feel I left with a greater understanding of him, so I think maybe it's a good watch for people who perhaps don't like him quite as much. I think they'll certainly see that he wasn't a misognist at all in any case! And you realise how extraordinary his life was, at about my age he was in charge of Givenchy and also running his own label - can you imagine the pressure? It also has really interesting interviews with people like family members and fashion insiders we don't neccessarily hear from often, so it feels even more intimate than you might expect. Fashion loves a myth but it was really interesting to see a more 'human' take - it was really moving and I certainly wasn't the only person who left the cinema crying. It made me even sadder we will never get to see what else he could have done. 

I was quite young when I found out who McQueen was and by then he was doing what would be his final collections, but he still had a profound impact on me. Growing up, I felt like my love of fashion and all the joys of CF (multiple surgeries, various scars, being attached to bits of plastic at all times, relying on tubes, plus metal rods in my back from scoliosis just to name a few) didn't sit that comfortably together. Add that with all the normal insecurities of a teenage girl and well, let's just say I never felt very 'pretty' or conventional. 

I remember being about 13 and watching Fashion TV and they showed a clip of McQueen's 2001 'Voss' show and I just remember thinking 'What the fook is all of this?' So I YouTubed it and spent the next few hours glued to the computer watching past collections, falling completely in love. I used to love Chanel, Dior, Valentino, which were often quite traditionally feminine. But here was a designer finding beauty in the 'grotesque' as it were, suggesting that these things weren't actually 'ugly'. 

To me it wasn't about glamourising things like hospital stays and IVs and decaying lungs but more about acceptance - I couldn't change the fact I had to be attached to tubes but what I could do was to try and see them in a different light. It comes down to that whole thing of not being able to control your circumstances but being able to control how you feel about them. In time, although I didn't and don't enjoy all the medical treatment I have to have I can see them as at least being interesting and I can appreciate how fascinating it all is when I think about how something may work. 

Of course it's not solely down to McQueen that my feelings changed but his attitude towards the mundane, about emotions - it all resonates. I really admire how confrontational he and his work was, so unequivocally him. I now don't water down or hide aspects of myself, particularly when it comes to my health. I can be annoyed at the situations CF has put me in, but equally I can look at my scars and think that actually, they're 'fuckin' wicked!' 

A Catch Up

What a rollercoaster month.

Although of course the highs outweigh the lows! I'll share them through some snapshots, as that's cuter. Let's start with the fun stuff...

As you can see, all the very best things! The wedding was sooo beautiful, it probably couldn't have been any lovelier. But in between all of that, this happened too.

An emergency bronchoscopy and biopsy, which is where they put a camera down your throat to check out what's going on in your lungs and they also snip out a tiny bit of them to test for rejection. This is a fairly standard procedure post transplant but I've had a bit of a chest infection and my lung function went from around 80% to 60% which is, you know, not fab. Although it's kinda nuts how my worst currently was my best back in the day when I was a kid! So I had to stay in for a few days and then I was allowed home to do IVs (which you can read about here!) Thank goodness my port is still working, at 16 years old it's well on its last legs but it's still pulling through for me - it's the real MVP! I was put on colistin and meropenem, a real delightful combo that makes you itchy, give you pins and needles all over, dries your skin out but at the same time gives you the worst breakouts and the greasiest hair, dodgy vision, bad dreams and knocks you out amongst other things. IVs are antibiotic drugs that you adminster into your bloodstream, in my case it was three times a day for two weeks. I've not had to do them for nearly two years, pre transplant they were a huge part of my life as I had to do them every three months and then for the last two years before I got my new lungs I was on them almost permanently. So I feel sooo lucky I've not had to do them for so long! I was struggling a bit with the side effects (I swear I never used to, transplant has weakened me haha!) which is why I've been pretty absent from the blog. I'm off them now,  but I'm not 100% so I have three weeks to get better or it's back for another bronch! In the meantime I'm trying to get back to normal so I'll hopefully be back on here writing nonsense as usual!

Tell me about you, how've you been?

Cystic Fibrosis Awareness Month

Maybe it's time to share the real nitty gritty.

I talk about transplant on here a lot but cystic fibrosis, the bastard that caused the aggy lungs in the first place, barely gets a mention. But I really wanted to write a post for Cystic Fibrosis Awareness Month and as we're coming up to the end of it I thought I had better finally publish something.

One thing I feel I should clear up is that although these shiny new lungs don't have CF any more the rest of me does - as if it was ever gonna totally go away, you know how bloody persistent it is. It's still there, lurking around in my other organs causing mischief from time to time but I can live with it. It was when it was in my lungs that it really buggered my life up. To breathe is the most simple of acts for living things to do and when you suck at it life isn't half difficult. I look back on old blog posts and I feel like I was so blasé about it. I knew it wasn't normal but it was my normal, I didn't know any different so just got on with it. Of course I had wobbly moments, all well documented on here to my great embarrassment, but on the whole I felt like wishing for anything different was a waste of time and I didn't have time to waste. Also maybe I didn't want to admit to myself just how bad it was because as much as I bloody hate the whole 'the only disability is a bad attitude' thing there is something to be said for having a positive outlook. 

However since transplant life has changed so dramatically I couldn't even fit it all into one blog post. Now I do know differently and now I have this new perspective on what living with crappy lungs was really like, as if I'm looking from an outsiders point of view. The specifics have slowly faded away over the past two years since transplant as I get more acclimatised to having lungs that work properly. But I do remember the general ways of it and I can see now that it was fucking awful. From the age of two when I was diagnosed up until 23 when I got the transplant it was a chest infection on even a 'good' day but it was x10 whenever I got ill. I had years of pill popping, IV antibiotics, physio, nebulisers, hospital tests, hospital stays all in an effort to just stay alive yet still my lungs packed in, which is just plain rude in my opinion. I don't want to make anyone afraid by sharing this photo again but I think it needs to be as although I look like I've been in a car crash or something all the destruction was happening inside me as a result of cystic fibrosis. It doesn't mess around! but basically the got so fooked they stopped working completely and when the surgeon removed them he had to literally scrape them out they were so stuck to my insides - noice hey? But I'm sharing this because I'm not the first person CF has done this to and I won't be the last, though I was one of the lucky ones who got through it.

Smiling, because I was off my fookin' head on drugs.

I have happy memories, of course I do, but CF robbed me of my early adult life as it decided to really go hard as soon as I hit 18. It's a degenerative condition, so bar IV antibiotics every three months and the hours of treatment I did daily my childhood was relatively healthy. But we always seem to say that, 'relatively' - it's the same when we talk about the life expectancy going up and the average person with CF will live to the age of 47 as something to be celebrated. Of course it is, but that's not very old at all. It's only now being post transplant that I can truly see how unfair that is. 

Life now is beautiful, I'm not exaggerating when I say it's like a dream. Or maybe it's not, because it's greater than anything I could have ever dreamed of. I've written plenty on all of the wonderful adventures big and small these new lungs have allowed me to take but it's important that the reason I ended up needing them isn't forgotten. As positive as life is now these lungs are most likely going to give me a few more years - they come with complications of their own and I won't make 47.  This is fine, I accept that and obviously I'm so grateful for this extra time but it's my hope that one day no one with CF will ever get to that point of needing new lungs. I think that past me would have written a post being a bit like 'I have CF but CF doesn't have me!' Well it did, it fucking owned me and nearly killed me. It was only because a stranger and their family saved me through organ donation that I had any chance of surviving. I always reference Game of Thrones, I think of the Battle of the Bastards. I am Jon Snow being suffocated by CF Ramsey and then I am rescued by Sansa and her men, my donor and the amazing NHS.  Getting to that stage was humbling, when I was sitting there on oxygen 24/7 and literally relying on machines to stay alive I thought 'Ah ok, this is how truly nasty CF can get.' I always thought it was horrid but it really upped the ante here and went Regina George on my ass. 

So I know that this isn't really one of the more positive posts I've ever written but I didn't want to sugarcoat anything - it's a horrid illness and although you can, because you have to, find so many wonderful reasons to love life when you have it it brings a lot of suffering too. Not just to you, but your loved ones also. That's the thing I hate the most about it, I can accept what will happen to me but I don't think I could be so okay with it if it was happening to someone I loved. I have lots of friends with it who are some of the most amazing people I know and it breaks my heart to see what they go through. It's why we have to keep fighting for drugs and research to be funded and that people with CF can live as normal a life as everyone else. 

Or or if you fancy any more information!

Shoes for the Super-Rich: The Most Expensive Shoes

Non expensive shoes for my non super rich self. 

I have something a little different today - if you don't know, I'm studying a degree in fashion history and once upon a time this blog was called Niamh Nelson Loves Shoes (LOL). So I found this article super interesting as it combines two of my great loves! As a student I'll have to stick to my high street shoes for now but one can dream...although these will always be out of my budget. 

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