“If it’s not bothering me, it shouldn’t bother you.”
So reads the current front page of an 18-year-old’s blog. She’s speaking about a genetic condition that millions of British C4 viewers now know a little bit more about after her documentary The Human Mannequin showed at 9pm this evening.
A little bit sentimental in places, with the dulcet tones of Adele tugging at the heart strings, for me the most moving moments were when I got caught up in the story of being 18, at home with mum, and trying to find a career for herself in the demanding world of fashion – and then suddenly remembered Louise has a whole other set of challenges faced every day. Any writer knows what it’s like to stare at a screen with writer’s block. I don’t usually have to deal with the fact that no matter what chair I find or position I try, I’ll never be comfortable. Jostling behind the scenes at London Fashion Week as an intern sounds scary enough. Add to that the knowledge that if, in the chaos and haste, someone knocks into you and you end up with inflammation and the slow turning of your muscle into bone.
Because that is what Louise meant when she quoted herself on her blog. To be in pain all the time, to not be able to get about or take care of herself, to know that in a few years her body will have turned to stone as her bones stiffen and calcium deposits create extra bone ultimately trapping her in a wheelchair. But to still smile and find pleasure in the beauty and excitement of fashion and work hard to make that passion a career is a beautiful thing in the face of the disease, known as FOP.
Besides all of this, Louise’s granny made me laugh and want her for myself, with her vintage fashion keeps and obvious pride at her grand-daughter appearing in Elle Online (only just eclipsing seeing her handbag in print as well!) A well deserved accomplishment for this young fashionista whose beautiful dress sense and make-up choices made me long for bright greens, gold nails and Peter Pan collars as well as neon pink lips.
Read Louise’s blog at The Baking Fashionista – she is a truly talented individual that deserves to be recognised a such in her own right, as well as commended for her positivity and strength in the face of disability. I, for one, will be watching her career…
P.S. Don’t forget my Kinky Knickers giveaway in yesterday’s post – open until November 14th!