Sunday 16 October 2016

Reflecting on Paralysis: The Cure Girls

When you look in the mirror, what do you see?

A imperfect nose...a fresh blemish on your chin? In this age of air-brushed perfection and cleverly-filtered social media, it's easy to be self-critical; to compare your looks, wealth, success - your life - to that of others.

But what if you looked in the mirror and saw a paralysed woman in a wheelchair gazing back at you. Would you still focus on that spot on your chin...or the fact that you can no longer stand up and walk?

Loredana Longo

This is the reality for the 2.5m people around the world living with a Spinal Cord Injury; those who were going about their business when disaster struck. In a split second their lives altered forever. But wait. Does it have to be forever?

Surgeons have managed to get a man with SCI walking again using  stem-cell therapy, but there is still a long way to go. More funding and research are needed if any of these patients are to have a hope of standing on their own two feet again.

One group of women who are only too aware of this predicament are The Cure Girls: a cluster of seven feisty young females from around the world, thrown together by a cruel twist of fate - and united in their determination to overcome it. The girls met online six years ago, and two years later The Cure Girls was born, the brainchild of Italian Loredana.

These were ordinary women just like you and me, whose everyday concerns were once superficial too. Only now they are forced to live extraordinary lives. One day, each girl suffered a tragic accident resulting in a spinal cord injury which instantly changed her life, including my good friend Lorraine (Lolly) Mack, whose story I've already written about on my blog and which appeared recently in HuffPostUK.

Suddenly, those little physical imperfections that used to be important just don't matter as much anymore. Now these girls have bigger concerns to occupy their minds - like finding a cure for the paralysis that dominates their lives, which would mean they could then get back to sweating the small stuff, just as they did when they were able-bodied. These girls would love to look in the mirror and see only a wrinkle or a spot...because that would mean they were cured, their reflections no longer dominated by the hard lines of a metal wheelchair.

Each Cure Girl has found herself sitting in this chair through no fault of her own - tragedy cutting her down in her prime. She's experienced the full spectrum of human emotions: shock, anger, despair, grief, frustration. Yet there is one emotion they all refuse to feel: defeat. They refuse to just passively accept their circumstances and give up on their dream to walk once more.

These girls have been to the brink, pushed to the very limits of human endurance...and have made the conscious decision to come out fighting. They may be in wheelchairs, but there's nothing wrong with their voices. And these voices will shout until they are hoarse in order to make themselves heard. They are shouting for awareness, for funding, for research, for a CURE. It may sound like a miracle: to make the paralysed walk again. But surgeons work miracles every day, transplanting hearts, lungs - faces even. Due to the wonders of technology Stephen Hawking can 'speak' using a muscle in his cheek.

Taking pride in your appearance is something most of us do instinctively, but it becomes a feat in itself when you cannot move from the neck down. However, don't be fooled by the girls' outward glamour. These pictures were taken on a recent photoshoot at The Hospital Club in London, since some of The Cure Girls were in the city for a series of important meetings and to get an update on the research news (the girls donated €70k last year to the cause).


These stunning pictures, shot by photographer Michelle George (make-up by Lauren Kay) illustrate their vitality; their feisty, vibrant characters. These are young women who want - who deserve - a cure. Yet while they enjoy dressing up and wearing make-up like any woman, they refuse to sugar-coat their injuries. The photoshoot is a useful vehicle for highlighting their plight and raising awareness, but they are careful not to gloss over the reality: they are in constant pain.

Whilst attention-grabbing images are vital, it's important that people understand their daily struggles, otherwise they may not understand the urgency of a need for a cure; instead wrongly assuming that they are coping just fine as they are.

Each girl's list of everyday ailments is extensive: chronic neuropathic pain to bladder infections, pressure sores to osteoporosis. Unsurprisingly, there are challenges to mental health too, with a high incidence of depression and suicide amongst SCI sufferers - meaning that the girls have also lost many friends along the way. Then of course there are the practical issues: complete loss of independence, the cost of medical equipment; whole teams of round-the-clock carers.

The Cure Girls work every day towards their mission, relentless in their endeavours to raise awareness; tirelessly fundraising through various initiatives such as sponsored FES-bike cycles, the annual Wings For Life World Run - even a skydive in Lorraine's case. They use blogging, newspaper and magazine articles as well as social media to highlight the cause. They will never give up.

So next time you peer into the mirror at the dark circles under your eyes with a sigh, spare a thought for these girls. They don't want your pity, they just want to walk again. With our support one day they too will be able to stand up and look in the mirror...

Donate here

TWITTER: CureGirls1
INSTAGRAM: curegirls
Here come the girls....

Arcangela's story:
"I had a car accident when I was 32 years old. After my spinal cord injury which left me paraplegic it's forced me to live a life whereby I cannot do a lot of thing that I would be able to if I was walking. I work daily with the Cure Girls and have visited labs here in Italy. I help raise money for Marina's charity and my Friends help us a lot too."

Loredana's story: "I was only 17 years old when I was involved in a car accident with my family which left me paraplegic. I am an active person with an extremely busy life, a graduate, I have a full time job and am politically engaged but I don't want to spend the rest of my life confined to a wheelchair so I decided to create the Cure Girls blog. I work very hard on a daily basis with the Cure Girls and I spend a lot of time raising awareness and fundraising so that it gets donated directly to research initiatives that focus on curing chronic spinal cord injury."

Lorraine's Story:
"In 2004 during a night out with friends an incident occurred which transformed my life. Suddenly I was lying on the floor of a nightclub totally paralysed. I knew that something was terribly wrong when all I could do was blink, my friends were telling me to get up but I couldn’t. Paramedics arrived and took me to hospital where I had emergency surgery. After a six hour operation I was told by doctors that my spinal cord was damaged ie compressed. What followed was ten months of rehabilitation in a spinal unit miles away from my home. During this time my family and I decided to fight this situation all the way and do everything we can for me to walk again. Since returning home I still work very hard to maintain my fitness, working with my physio five times per week. I retain my passion for the same things I had pre-injury namely travelling, fashion, music and glamour modelling and have taken part in a skydive, sponsored cycles and Wings For Life alongside my fellow Cure Girls."

Marina's story: "At present I'm a student of psychology at the University of Bologna but at time of my injury I was a professional cyclist and had a promising career in Italian cycling. In June, 2010 I had a very serious accident during my cycling training when a car cut me up making me come crashing off my cycle. Since that terrible day my life has changed radically. I was taken to hospital with very serious conditions then went into a coma, I came out of the coma on June the 9th which was my 22nd birthday. Since that day I've been paralysed from the waist down and confined to a wheelchair, because of a spinal cord injury. In spite of the many difficulties I face and the obstacles that a paralysed person has to face on a daily basis that doesn't make me lose the will to fight in order to have my healthy, active life back. During the long period spent in hospitals and rehabilitation centres, which is still going on, I really discovered the pain of human cases that are even more dramatic and awful than mine. It is for this reason that with my family and closest friends I set up the non-profit Marina Romoli Onlus with the aim to support research into therapies able to cure spinal cord injuries, but also helps people under 30 under who have been involved in sports and have been victims of road accidents. We help them financially in order to help them pay the very expensive costs of therapies and rehabilitation. My charity has raised over 200.000€."

Barbara's story:
"I was 11 in 1987 when a fall from a swing left me paralysed from the shoulders down. I sustained a cervical spinal cord injury at C4-C5. I am totally dependent for all the activities of daily living, I can experience some autonomy in using my power wheelchair just because I guide it pushing a little button with my chin, and when I use my computer with a voice control programme or writing with a stick in my mouth. I support research, making donations to various charities and work everyday with my fellow Cure Girls. I participated in the last two Wings for Life World Run. A cure for me would mean no more fear about my future because just recovering the use of my arms and hands is all I need... after 29 years of tetraplegia I think this is a fair wish."

Sabrina's story: "I was 28 years old and so fit and healthy when I sustained a C4/5 spinal cord injury when I fell to the ground whilst doing a simulated air surf on the beach. It's a kind of like a huge swing. My life completely changed, paralysed from the shoulders down and having to rely on 24 hour care. I went from being a beach loving, surfer girl who loved martial arts, running and was also a really good cook now confined to a wheelchair and fighting for a cure! I work on a daily basis with my Cure Girl sisters as we all have the same passion to become independent and also walk again. I have organised fundraising events in Porto Alegre, Brazil and take part in the Wings for Life World Run along with my sister and lots of my friends & family.I've also appeared on TV and newspapers here in Brazil to raise awareness and spread the message that there is an urgency for a cure for paralysis."

Rebecca's story:
"I was 22 when I had a riding accident during a polo match. I am injured at T12, L1 & L2. For many years I was very lonely. My twin sister had her life and watching her do all the things we were both supposed to be doing was hard.I have had quite a few health problems around bladder and medications. I suffer badly from nerve pain. I am married now and we have a 9 year old son. That was a very difficult time. I work tirelessly to raise awareness along with the girls. Taking part in the wings for life run and have a hand bike push coming up next year, health-permitting.To have a cure would be like being given a miracle. To be able to go on the beach with my son and I'd marry my husband again - but standing up this time."

This article has also appeared in The Huffington Post UK.

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