Mary's Story

Dear Everyone,

I am a 27 years old Spanish girl who was born the 15 December 1984 in Baracaldo (Bizkaia).

That day was supposed to be one of the most beautiful ones for my family because I was to be born. My mum was willing to hug me, to caress me, to enjoy the birth of her only daughter but… unfortunately, an unexpected thing that would change my life and the life of all those who love me happened.

My mum gave birth to me in the 6th pregnancy month: I weighted 1.490 grams and she saw that I had something different: When she was finally able to hug me, she realised that unlike other children I did not cry.

All the mothers cannot normally rest due to their babies crying, unlike my mum who was willing to hear my voice, my shouts, my crying.

Unfortunately, I did not cry because I had a three days oxygen lack during childbirth and the doctors diagnosed me Infant Cerebral Palsy.

I was closed in a special incubator for many months: Now I cannot remember how I felt inside it but I am certain I would have wanted to go out from there to be together with all the people who were willing to carry me in their arms to hug and to caress me.

Little by little, as I was growing, I realised what I was going to suffer, day after day, month after month, year after year. Little by little, I understood that unlike other children, I struggled to move, to walk, to jump... and when you realised what has happened to you, suddenly, from one day to the other your life changes and you raise yourself many questions, all of them with no answer.

How many times have I asked myself why me? What have I done to deserve this? Why doctors have not recognized their errors and far from that they even continue working as if nothing happened?

These are questions that even today have no answer. Until now I have continuously suffered and the doctor who ruined me my life will be still working with clear conscience even if he had shattered the dreams of an innocent baby who nowadays is already a woman.

An error such as the one happened to me, apart from hurting the person who has to live forever with leg palsy, it also creates a deep wound in the families that have to live together with a disabled person: I began to walk with crutches, but as I will tell you later, nowadays I am in a wheelchair and I need another treatments but unfortunately now I cannot afford them.

I am, nevertheless, a lucky girl because the palsy has just affected my legs and unfortunately there are completely paralyzed people who need more treatments than me.

In addition to the fact of having your life ruined, being disabled (or as it is said nowadays differently abled) is bad because all the people tend to consider you a nuisance and above all tend to see you as different from the others. This is absolutely wrong: each person has the right of living a normal life, with dignity, with her fears, her dreams, her affections and her most beautiful and profound desires.

In spite of the questions with no answers, the doubts, the fears, the anguish, the crying, and when you think that you are not going to be strong enough to raise after the umpteenth time you have fallen, I have always fought and I have always overcome all the life obstacles until now, and now I am ready to overcome the biggest one.

Since I was born I have done physiotherapy in different hospitals. With the help of these treatments at the age of 4 I began to walk with crutches, after having undergone surgery in my feet's Achilles' tendons.

Despite the difficulties, the day in which I have been able to move with my own legs, even if limping, I was the happiest baby in the world.

Crutches have been my fellows until I was 11, because then a horrible thing, that I will tell you later, happened. Until that day I used to leave or throw down my crutches and I used to walked alone because I knew I was able to do it, my heart told me I was able to walk with no help.

When I was 11, unfortunately everything changed. I had a right leg dislocation and on the Christmas day in 1995, while everyone was cerebrating and exchanging presents or wishing Merry Christmas to everyone, I was admitted in the hospital where I stayed in a bed for nine months, dreaming I was going to walk after the surgeries and the necessary therapies to be able to celebrate the following year's Christmas walking.

Months were endless, very difficult for me but overall for my family, because I cried a lot and I bored much pain due to the surgeries, I would have never thought I was going to be able to endure such a pain, those leg injuries, those irons that were stuck in my bones giving me the hope of being able to walk in a near future.

Once again, surgeries were not correctly done and unfortunately my right hip got dislocated again. All my hopes and illusions evaporated, all my suffering had been for nothing, but overall the one who really suffered due to this situation was my mum...because everything she had done for me had been for nothing: when I was 14 I ended up in a wheelchair again such as when I was 11.

In order to leave my place to another person, I was sent home even if I was receiving specialised physiotherapy treatments, telling me that there was nothing more to do. These words were very painful such as an arrow which strongly hurt my heart leaving me a gap and a discouragement feeling impossible to describe.

In all these years, my mum has always helped me, she has taught me to be proud of myself, not to be trampled by anybody, and overall to fight always.

From Barcelona to Madrid, San Sebastian, France, London, Cuba... I have travelled all over the world searching for somebody who would have helped me but all of them told me that there was nothing to do, telling me that I was destined for living in a wheelchair forever.

Receiving a no after another leaves you with no strength, yours dreams fade little by little, such as a flame which slowly puts out due to an air lack, and everything becomes obscure in front of you, because no one understands your situation and no one wants to help you.

Medicine is still at a standstill and the few treatments that nowadays are at people's disposal in order to improve the health of the people affected by cerebral palsy are very expensive and few people can afford them.

It is true that it is not easy either for the one who suffers these horrible things or for their families and friends, but all of us deserve to have the best cures available, even those who unfortunately cannot afford them.

I, however, did not give in: I have always practiced sports, I swim, I go sailing, I go cycling, canoeing, skiing... I have always fought to overcome all the barriers that have appeared in my life, I have always fought to defend my rights, I have always fought to smile, I have always fought to continue my life never giving in and always dreaming that one day I will be a girl like any other.

Since I was 13 years old I have always travelled abroad alone without fears, when I was 17 I went to Zaragoza to study physiotherapy. I stayed there for a year but unfortunately I have been obliged to give up these studies because of the school's inaccessibility for people in a wheelchair. I went back home and I enrolled for English Philology studies at the University of the Basque Country in Vitoria. During the first year I got the driving licence too.

In 2007 I decided to do my Erasmus exchange programme in Italy but I have other kind of difficulties: The University told me that everything was all right and that this faculty granted the accessibility to all the disabled people but, actually, this was not true at all. Therefore, I reported the Italian university were I did my Erasmus exchange programme for inaccessibility of the lectures for disabled people, by uploading some videos on YouTube which showed the bad conditions, I or the people in my same conditions, had to undergo everyday if we wanted to attend university lectures.

Even nowadays, the students in my situation which have to move in a wheelchair thank me. I went on TV 7 times, on the radio and in almost all the newspapers, but doing this has been the most natural thing in the world for me, denouncing a system which does not grant the possibility to study and which does not grant accessible lectures to attend lessons.

On the other hand, the silence of the other students in my situation shows that usually people do not fight for their rights and, on the contrary, they prefer to survive in society even if this means to continue being discriminated, enduring stereotypes for being “differently abled”. People many times leave things as they are, they adapt to the situation and in my opinion this should never happen.

It is true that it is not easy to withstand all the adversities that happen every day. People's pity and compassion, people who see you as you provoke pity to them, insults, the lack of sensitivity, the little intelligence, the little realism, and overall, the awareness of being really a burden in society.

The are plenty of reasons to not give up and to not isolate oneself from the world, but besides this, we have to show that all of us are equal, that we have not looked for this difficult situation that we have to live with but it just came. Nobody is free to mistreat a person, to consider it inferior, not matter who it is, because today can be me the one who needs help but tomorrow it can be somebody else the one who can need my help.

If someone lacks of something, usually he or she compensates this lacks by the development of other qualities, analyzing the things more deeply than others: many people who have lost their motor or sensory functions, develop a great sensitivity and have less shallowness: all of us are equal and we have to fight all together without discriminating against others.

Life is a continuous learning, a continuous fight, and in this fighting apart from learning new things all the time, I always tend to be a better person, I never stop smiling, because I have always thought that, if you smile, even if many times you do not fell at all like smiling, you can make the person next to you smile making her forget for a moment all her problems, even just for a second. A smile is a small and priceless goodwill gesture that is being forgotten in recent times.

Recently, we tend to buy people's consciences, to buy their silence, to disguise the reality, but instead of being quiet we must be heard, we must show that we are alive and we must fight to obtain what we want.

And I do personally want to leave this wheelchair and I want to walk unaided, with my own feet, as I did when I was a child. It does not matter if doctors have always told me that there is nothing to do, because I have learnt to never give up: I know about people in my same situation who have been lucky in having found good doctors and people who have helped them, and even if they will never be able to totally recover, they have been able to improve their life conditions very much.

Leaving the wheelchair would give me much more will to live, much more strength to fight, it would give me another life, I would finally be able to see my life from the point of view I saw it when I was a child...it does not matter how difficult this could be, how painful this could be, how expensive this could be, because I want it and I know I will get it. I have fought for many dreams in my life, and whenever you struggle hard for a dream you always get it.

I have seen on the internet that many treatments that could help me exist, among others functional orthopaedic surgeries, and there is also the possibility of following a stem cells treatment. In such a way I could correct my femur dislocation, lengthen my Achilles tendons, reduce the spasticity in my legs and recover the correct flexion and extension of my lower limbs.

Probably, there are many other treatments, but I would like to know everything it can be done for me, so that I can live the life I have never had and so that I am able to see the world from a high point of view and no from the low one that the wheelchair offers. Each small goodwill gesture means a lot to me and it could be transformed in a big dream to have a better life.

If my story has a successful ending, it would help many other people who already have no hope, because I had no hope either, but I want to fight again because I know I will be able to get out of this situation in order to help in the future all those people who have given up.

As Obama said, if you want you can, so I want to delight myself with this dream, but above all I want to delight my mum who has always been with me, who has cried with me, who has always embraced me and who has always loved me, and I want to delight my friends, I want to delight all the acquaintances of mine and finally I want to delight all those who love me and all those who wish my happiness. The most difficult things, the most impossible challenges, the biggest victories have never been easy, but, they have always brought the best results, therefore... YES I CAN!

Hugs,

Mary P. M.