«I Have Got Cerebral Palsy But I Am Not Sick Jose Manuel Mancisidor Olaizola I Have Got Cerebral Palsy But I Am Not Sick Author: Jose Manuel ...»
I Have Got Cerebral Palsy
But I Am Not Sick
Jose Manuel Mancisidor Olaizola
I Have Got Cerebral Palsy
But I Am Not Sick
Author: Jose Manuel Mancisidor Olaizola
With the help of: Jasone Osoro (Berbak: www.berbak.net)
English translation: Kabetimi
Edition: Joseba Ossa
Original design: Garazi Larrañaga
Layout: Roberto Gutierrez
Pictures of IZA: Pantzeska Xabier Cos
L.G.: BI-0639-2013 Contents Foreword
My first time
Pee on Me and Colored Popcorn
A Coffee Break in the Nude
A “Budy” is Born
Studies, what on earth for?
Independence at Last!
A Career Man
Home Alone? Perish the thought!
On My Soapbox
I Am All Ears and No Voice
My Own Soundboard
The Happy-Go-Lucky Me
Aunt Txisi’s Turntable
Donkey-back Riding in Morocco
A Birthday Present
Like Squeezing Water from a Stone
The Latter Years in Zumaia
My Attempted Suicide
Turning Over a New Leaf in Iza
Foreword We always say most problems would disappear if we could put ourselves in others’ shoes. Sometimes it is not easy. There are many things we don’t understand, but people are people wherever this book can be read and Budy has a lot to say. That’s why the English version of what he wrote had to be done. Let’s give his words a voice! We do know you won’t feel the same way he does, but thinking about it is a must.
Budy 5 Budy I’m Budy. I have got cerebral palsy. But I am not sick. Cerebral palsy is a brain injury and it usually occurs during childbirth. In my case it was caused by the lack of oxygen, because of the amniotic fluid I swallowed.
I am not sick, this is the way I am and that’s it. I have many physical limitations: I can’t talk, I can’t walk, I hardly use my hands, I can’t dress myself, I can’t have a shower or eat on my own. I am forty-seven and the list of the things I cannot do is endless, but I’ve been quite independent and lived alone for 20 years.
This is my story. My life. The life of a guy with CP (cerebral palsy) whose body has failed, but not his head.
There he is. Nobody expected anything from such a boy. Nobody except the family. Nobody except my mother. Who would say this child was going to work for 22 years, have his own home and travel so much! Who would say he was going to write a book! Oh! I’m moved. I am proud of seeing how far I have come.
8 Budy My family This is my family. Family, what a great word. It has been very important in my life. He who says the opposite, has missed a great treasure in life. I wouldn’t be what I am today if they hadn’t been there. Thanks to them, I am who I am. I think each of them has helped me in one way or another.
They have helped me without knowing they were doing it. Some of them have done so in an active way and others, by doing nothing in particular.
That’s life. You learn from everything; I mean everything, whether it be good or bad. It is hard to believe. It is hard to take in, but it comes down to knowing that the most important lesson in life is to keep on learning.
That’s why I am always alert. Alert to what they tell me. Alert to what happens around me. And, mainly, alert to myself, especially to my reactions, my way of thinking, of feeling, and of doing.
But I’m getting sidetracked here a little bit. What I wanted was to talk about them, about my family (in bold letters). They are the greatest thing
And yours truly, like all kids that age, tried to get out of doing chores by saying, “Okay, Mum,” time and time again and Mum would end up yelling, “Jose Manuel!!!!!!” My father was from Getaria, from the bar called “The Getarian” nonetheless. He was a man who was the product of his times. He did not know what family living was like in that he was in the bar all day and his father only came home at meal times. That is the way it was, so what he experienced in his childhood was what made him who he was. He got married and carried on in the same manner.
He always treated me with kid gloves, even when I needed adult ones.
He never accepted the fact that his son had CP. In his eyes I was always a child at two, and at ten, twenty and thirty. His tone in speaking to me was as if I were a child and it never changed. There were occasions in which this seemed insignificant but, in fact, it was not. For instance, when my brother and I were about fifteen or sixteen, my father gave him 500 pesetas for pocket money but only 200 pesetas to me. I rightfully got angry about this and he explained that he had given me less allowance because I could get into the cinema for free. My mother and I felt these types of actions were not fair. When he came home with presents for me, for no special occasion in particular, he undid all the progress my mother had made with me in teaching me to become an adult and to behave as such.
We didn’t see eye to eye, but I now know why he behaved like he did, and, in one light, I understand. But, above all, I know that he always loved me very much and, probably, everything he did was to shelter me.
I was not a person with CP for my brothers and sister. Usual were the times when we fought like all siblings do. The quarrels always stopped when someone said, “I give up,” but before saying that, we would have preferred to have gouged out an eye (figuratively speaking, of course).
10 My family I was simply one of them, with the universal understanding that I had my limitations, that is for sure. My brothers and sister knew all too well that I could not run and that I had special needs. This sometimes caused friction. One day, when my older brother was around six or eight years old, he asked Mum, “Mum, don’t you love me?” and she replied, “Why do you say that?” The answer was, “Because you help Jose Manuel to eat and dress himself and not me.” My mother was crushed. She had time for each and every one of us, but my brother noticed that she dedicated more time to me. It is difficult to explain to a child that his brother has CP and needs more attention. It is very difficult to understand. That’s one of the prices that my brothers and sister have had to pay for me.
During my adolescence, things had changed. My brothers and sister each had their own groups of friends and we only met at home to eat and sleep. Our relationship had its ups and downs. There were laughs as well as tears. I had my problems, my frustrations, and of course, they often bore the brunt of them. They clearly remember the problems I gave them, because of one thing or another. I made them cry, and, many times, we didn’t understand each other. My sister, Ainhize, confessed to me she had hated me and even wished my death more than once. It crushed me to hear my sister say such things, but I guess I made her feel that way at times. The good which has come from all of this is that we have aired it out, expressing our emotions, without hiding what we think and feel.
And now, over the past few years, we have a nice relationship. She always says, “Actions speak louder than words.” I will try not to disappoint them ever again.
My full name is Jose Manuel Mancisidor Olaizola. I was born the 12th of January of 1964, in Zumaia, a town on the Guipuzcoan coast in the Bay of Biscay. I’m the middle child (the second one of four): three boys and 12 Mum a girl. Well, let me set the record straight. There were five of us, but my sister, who was born after me, died of spina bifida when she was eleven months old. Nowadays people who have this condition manage to live their lives, but such was not the case in our times. Her name was Maria Juncal.
My mum, Miren, quickly realized that I was different than the others. I didn’t do the same things that my brother could do when I was his same age. She was the one that spent, day in and day out, time with me and knew that something did not settle right. Was it women’s intuition? A mother’s instinct? Surely it is both of these (along with being of strong character, having the ability to see the writing on the wall and, above all, accepting the hard truth). Others, at best, would have denied such reality by saying that there was nothing wrong with their child and he was simply slower than the rest in learning things. Others, surely, would not have noticed those tell-tale details. Some, at best, might have recognized their child was different later on, which would have been much too late, though.
I was lucky to have the mum I had, although the rest of the family was not so sure about that then. What’s more, they were convinced that she was paranoid. That is, until the day came when she (stubborn as only she is, and, as a last resort) showed some photos of my brother and I to my dad and uncle, Cruz Mari, to compare. They were photos in which we were the same age. My brother’s head stood straight up whereas my head was twisted to one side. It was clear that something was not right (it makes me cringe when it is expressed as “not normal”) in terms that I wasn’t moving along at a proper pace. It was then they decided to do something about it.
I was 18 months old when my mum took me to Madrid. We went by airplane, which, at that time was an adventure for anyone. She was pregnant with Maria Juncal and we went with her sister, Maria Luisa. My mum is a courageous person, and, contrary to what many people may think, she had faith in her son from the very start. She knew that, despite my limitations, I was capable of living a normal life. Nearly normal, that is, as close to that as possible. Normal within the framework of what we understand most people do.
One thing is for sure is that she was the worst thing in the world in my mind at that stage of my life. She was constantly on me, “Manuel, your knees!”, “Manuel, you are drooling at the mouth!”, “Manuel watch your posture and keep your bottom in!” I was slapped more than once. It didn’t matter whether we were, alone at home, outside, or in the middle of a crowd. The villain was Miren, the mum who hit her poor boy. What would happen nowadays if we saw a mother treating a child like that?
She was a mum who slapped a child who has CP, to make matters worse.
She always said, however, “I prefer to cry today, than to see him crying tomorrow.” Of course it was not easy for her to hit me. When I fell asleep, she sat at my feet and sobbed. She still tells me today “Manuel, you don’t know how much it hurt me to hit you when you were young and it often happened for no specific reason but just from all the stress which overcame me. Forgive me.” It hurts me to hear this because thanks to her slaps, and the love she gave me, I am who I am.
14 Mum Hiking in the chapel of San Lorenzo, with my father, Cruz Mari and my sister Ainhize. My brother Jose Antonio would not be too far, and my mother, as always, present in my life, even in the shade, as in this case, taking the picture.
And she didn’t teach me more because she didn’t know how to. She was a housewife who had only finished grammar school and who tried hard to make sure her son, Manuel, learnt the same as the rest of her children.
My mum wanted to give me tools to get on in life. And boy she did.
We did physical therapy every day. She bought an exercise mat and put me on the floor with it to do with me the exercises they had taught her in Madrid. This blue flower-printed mat was perfect for a child. It was something that more than one kid, even nowadays, would want to have at home. I wore a cloth nappy (because disposable ones like there are now weren’t around) to do floor exercises. At first she just moved my legs.
And of course, it hurt me and I started crying because stretching tendons hurt. After that, she taught me to crawl. She was told that if I could crawl, I would very likely be able to then walk. And that was exactly what had happened. I started crawling. What a joy! I could go all over the house, switch on the TV alone, tease my brother and get into more antics. Crawling was a revolution for me! I also went out on all fours to play with other children. I was a bit more independent!
I remember one particular afternoon when I was with my mum at home.
I was playing in the corridor, and my mother was working around the house. Suddenly I placed my hands on the wall and stood up. I started to walk towards her without holding onto anything. My mother, astonished, wept with joy. She picked up the phone and started phoning evMy first time erybody about the good news. “Jose Manuel oinez hasi da! (Jose Manuel has just started walking!)” It was as if she had won the lottery. The truth is, she really did win the lottery. That was my first time I was on my own two feet.
We lived in a ground floor flat which had a patio in the back. My father set up some parallel bars for me so that I could walk along them and strengthen my legs. My mother had me practice walking there every day, except when it rained. If it was cold, I did so with a coat, hat and scarf. If it was hot, I was there, wearing a T-shirt and swim costume. That’s how I learnt to walk. I was five then.
On a day trip in Saturraran (Gipuzkoa). Once more, my mum is ever-present. Though she is not in the photograph, she is the one who is pressing the camera button.
My childhood wasn’t very different from any other child’s. When I was a year old, we moved to San Jose Street. It’s a small and modest neighborhood, surrounded by green hills and farmhouses. At that time, San Jose Street was unpaved, and, a stream flowed down the mountain and crossed the whole street. We used to collect branches and stones and would make dams with them.