CURE GIRLS: One year of our activities to support the CURE!

A year has passed and we all tried, each with their own ability to find new ways to support research for a cure for chronic spinal cord injury.

We have organised events, did a skydive, took part in marathons, got friends and family also to take part in marathons/challenges for us. We also done photo shoots to launch a campaign highlighting the aspects that characterise people in wheelchairs living with paralysis.

Us Cure Girls have also edited, translated, shared, documented, visited research laboratories, raised funds and Skype call each other regularly for conference calls brainstorming and discussing future possibilities/campaigns.

PHEW!!! We did everything we possibly could to get our cure message out there.

Unfortunately our condition is the same but WE WILL NEVER GIVE UP, we will continue to fight until CHRONIC SPINAL CORD INJURY becomes curable. We do hope that we can count on a growing number of people who will support our mission.

A VERY BIG THANKS to all of you who have supported us, followed us and been by our side. We couldn’t do this without your love and support. Wishing you all much peace, joy and happiness and hope that the new year will bring us a CURE for chronic spinal cord injury.

Lots of love,

The Cure Girls X

VIDEO: CURE GIRLS: One year of our activities to support the CURE!

Annunci

Cure Girl Barbara: “La mia (in)evitabile Lesione”!

Altalena

Ventisei anni fa la mia vita cambiava per sempre. Una caduta dalla mia altalena mi ha lasciato paralizzata dalle spalle in giù.

Ho subito una lesione spinale tra la quarta e la quinta vertebra cervicali in seguito a un colpo di frusta nell’impatto col terreno. Ciò ha causato lo slittamento delle vertebre che hanno lesionato il midollo. È successo perché avevo il torcicollo miogeno, una patologia congenita.

Prima dell’estate del 1987 stavo facendo delle visite per cercare di risolvere il mio problema. I dottori che mi hanno vista confermarono la necessità di intervenire chirurgicamente, ma nessuno di loro mi informò sui rischi che potevo correre con le mie vertebre che non erano nella loro naturale posizione. In particolare ricordo un radiologo piuttosto preoccupato davanti alle lastre del mio collo… Ma non mi disse nulla.

Poi, ironia della sorte, l’ortopedico che avrebbe dovuto operarmi decise di rimandare l’intervento dopo l’estate…Il 13 agosto caddi dall’altalena.

Se solo fossi stata messa al corrente della gravità della situazione, dei rischi che questa avrebbe potuto comportare, e se avessi indossato un collare quel terribile giorno… Beh, non posso esserne certa, ma forse la lesione non ci sarebbe stata.

E ora sono una donna di 37 anni che non è padrona del proprio corpo e totalmente dipendente dagli altri per tutte le azioni della vita quotidiana. Sono rimasta anche con tante domande senza risposta riguardo la condizione del mio collo prima della lesione.

Ma adesso voglio lottare per una CURA per le Lesioni Spinali Croniche.

Bisogna divulgare il messaggio dell’urgenza di trovare una CURA o una combinazione di terapie. Tutto questo non è così lontano, ma si DEVE AGIRE ORA per accelerare il lavoro dei ricercatori, affinché trovino la soluzione o le soluzioni per rendere reversibile la paralisi in tutti i tipi e i livelli di Lesione Spinale.

La Vostra Cure Girl Barbara

Cure Girl Barbara: “My (in)evitable Injury”!

Altalena

Twenty six years ago my life changed forever. A fall from a swing left me paralysed from the shoulders down. My spinal cord was injured between the 4th and 5th vertebrae following a whiplash just after the bump on the ground. This caused the slip of the vertebrae which injured my spinal cord. It happened as a result of being born with a stiff neck, ie my neck was crooked.

In the late spring of 1987 I was going for appointments with doctors to try to solve my problem. I was told that I needed surgery to remove my malformation, but none of them informed me about the risk of my vertebrae not being in their ‘natural position’. In particular I remember seeing a radiologist’s expression on their face while looking at the x-rays of my neck. He looked extremely worried but did not inform me of the dangers. It’s ironic that the surgeon preferred to operate on me AFTER the summer… my fall was on August 13th, 1987.

If only I knew the seriousness of my problem, the risks I could run and even if I had worn an orthopedic collar on that terrible day… well, I can’t be sure but it may even be prevented.

Now I’m a 37 year old woman who has lost the control of her body and completely dependent on others for all actions of her daily life. I’m also left with many unanswered questions regarding my neck before my injury.

I want to FIGHT now for a CURE for Chronic Spinal Cord Injury. We have to spread the message of urgency… a  CURE or a combination of therapies is not so far away but actions can be taken now to accelerate the researchers jobs.

It’s imperative that we FIND a CURE so that everyone, of all kinds/levels of Spinal Cord Injuries are eligible.

 Cure Girl Barbara

“Clothes make the Girl” (Part 1)

Vetrine

Sometimes when I see nice dresses while window shopping, I can’t help thinking about how nice it would look on me if I was still able to walk.

After seven years of life with a sci this feeling is not as strong as in the beginning. But there are still days that those thoughts are coming back and they are not always easy to deal with. And no: I can’t stay away from the shopping centre!

It’s not easy to buy good and nice clothes when you’re in a chair. Or to tell you the truth: you completely have to change your style. And it will never be really you again, i think.

Sometimes we are forced to wear things that are not very charming, because of balance problems or to keep our bloodpressure up.

Things that you normally don’t have have to wear before you have reached the retirement age. Or to speak with Cure Girl Lolly’s words: “With a sci you sometimes have to wear things that you dont want to be seen dead in.”mutandoni_di_Bridget_Jones

There are more reasons why we can’t buy what we really like to wear : Clothes need to be elastic, because we can’t stand up to pull everything up.

In the streets you probably see many girls in those maxi dresses. They are nice, but if you don’t take enough attention, half of your dress rolls into your wheels in no time.

What about the size of sweaters and tops? It’s not always possible to buy things in a small size, because your arms can be too big from rolling around every day.

There is one really important point i want to share with all of you: We always need to be sure that our clothes don’t give us pressore sores, because we don’t want to spend most of our time in bed waiting for a wound to heal.

That’s why i cut off the pockets of my new jeans, before wearing them. One red mark can become a terrible wound. At the moment one of the cure girls is recovering from a sore and i think that this is one of the worst complications of a spinal cord injury.

I’m “glad” that leggings are still fashionable, especially in combination with a nice short dress. It’s the best clothing article for girls with a spinal cord injury. And I guess they are okay, as long as you don’t wear white ones 😦

To be continued

Cure Girl Maaike

There would be no more days like that

rainbow

Five years have passed. I remember it like it was today. Seeing her euphoric waking up as if she knew that those were her last steps.

Put on her bikini and fixed her wavy hair that was sun bleached from the beach. She made coffee, woke her friends and explained that it was a beautiful day in May and they should enjoy every sun ray. There would be no more days like that. after that day it would be cold, windy, and cloudy at the beach. That was how she saw the winter. And unbeknownst to her that was how the days would become. Even though the winter was over and spring flourished with the most beautiful colors, in her world everything was translated into black and white. The black from the past that moves away at a speed unjust, detaches from the soul memories without the slightest sense.

Arcobaleno di luciLeaving only a scent of what once was. That one day went. In this body I’m not. I’ll never be. As much as dreams are preserved they try to keep alive part of my essence. There are two lives into one. There are two of me and the biggest challenge in life is dealing with longing for myself. It is the most difficult and most incomprehensible part within a single person. That much I can explain but never understand. Black is the absence of light resting from the mixture of all colors. My rainbow is overshadowed .

I was this: many in one . It was light I wanted. I was in a hurry to live. It now remains white uniting all colors and reflects many light rays but doesn’t absorb any. Showing only it’s maximum clarity : the raw target unknown. Ironically, it has all the colors but can’t be any of them. Be everything and nothing at the same time in the same body. Black, shapeless, and flawed is the most perfect translation of what I was. Today my raw form consists of everything but only reflects what you see in me.

Cure Girl Sabrina

“Love” after Spinal Cord Injury

WE WANT TO BREAK FREE

How do I feel when you’re near me, my love? My heart is beating and my mind thinks about how it would be nice to make love with you. But then what?

You move closer to me and kiss me. I wish that I could be free to move but I can’t.

While every other woman would let go, my mind screams: “Hope my bladder doesn’t leak and face embarrassment. Uhm.. I have to stop him and tell him I have to catheterize first but I should expect to undress me before?”.

It is humiliating and isn’t sexy.

Then I try to convince myself: “We’ll just have to get used to the idea if we want to stay together”.

Passion? My passion is blurred, all my mind can do is worry. I don’t feel anything…Not even a caress… I hate it that I can’t even feel my partner’s hands caressing my skin.

A Cure Girl in Love

Why not?

Why not?

There are those who look at things the way they are, and ask: “Why?”

 I dream of things that never were, and ask: “Why not?”

Robert Kennedy