Lucky / by Maria Spadafora

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Every morning when I get out of bed with no sudden breathing issues, I am thankful. I count my blessings every single day. I am lucky.

I’ve been in remission with sarcoidosis for 5 years now, yet remain hyper-aware that I could become very ill again at any moment. This is part paranoia, part dread, but also me checking my privilege because I am well enough to get on with life. I will never be the gym-going, regular runner I once was, and still have lingering issues (I can’t do anything too aerobic, struggle with stairs, and have occasional bad days) but I can function well. I’ve been told sarcoidosis can leave scar tissue, in my case in several places on my lungs and lymph nodes, so it makes sense that it still affects me.

For Emma Rose, my baby sister, her ‘hidden disability' is bilateral hip-dysplasia. She was diagnosed at the age of 30 after this then-unidentified deformity in her hips and pelvis had caused such internal damage and unbearable pain (including symptoms such as her legs ‘buckling’ after sitting for long periods) that she sought help. There is a long story attached to this, that I won’t go into, but it was another 4 years before her first surgery – a periacetabular osteotomy, or PAO for short. This involves bone cuts around the hip joint, freeing it from the pelvis which allows it to be rotated into a new position (people often mistake it for a hip replacement, but that is a very different surgery). Recovery is long and slow – around 6 months needing a wheelchair and crutches, followed by several more months with a combination of crutches and walking stick until she can manage longer distances unaided. It’ll amount to a good three years of pain and mobility issues before it’s all over. And there are so many issues her first surgery flagged up that it would take at least one other blog to address them, but let’s just say the NHS is clearly struggling and not all employers have decent provision for sick pay.

 The day after Emma's first PAO in 2016

The day after Emma's first PAO in 2016

Following Emma’s first surgery in 2016, we undertook a documentary photo project, capturing her progression over several weeks.  A few months after her second surgery, which took place in May this year, we collaborated on a portrait project.  I am no expert on representation of disability in the media, advertising, fashion, etc, but I think it’s fair to say we don’t see much, and I would love to see more positive imagery.  So we spent a couple of days shooting photos showing her to be the vibrant, colourful, glam young woman she is, whether in a wheelchair, on crutches or unaided.

Walking (sometimes wheeling!) around London, Emma received so many positive comments from passing women - telling her she looked beautiful, they liked her dress, her make-up. Women bigging each other up means a lot. There were negatives, too. I grew particularly impatient with people almost walking into her, too absorbed by their mobile phones to notice the people around them, oblivious to how much pain and damage they could inadvertently inflict on someone in Emma’s position, should they bump into them.

So these pictures are my baby sister being who she is - glam, funny, independent, vibrant, normal, lucky.  Whether on wheels, on crutches, or unaided, she is all of these things. And I’m so lucky to have her in my life.