Jose´s Testimony in Brief. Enjoy it !
I guess it is difficult to summarize a whole life long testimony. But here you can find mine, from the point of view of a person living with ED.
The main difficulties are related to the summer season in Spain. It is the hot season where you can reach temperatures up to 40ºC in the day time..
Written by jose1967, published 7 months ago.
I was born with ED in a hot summer day of August. It happened in Madrid (Spain) and I always wonder how I survived in such weather conditions with so little literature and knowledge about ED in the late sixties. I guess mothers have a special instinct about what happens to their children.
I hardly can recall my early days and I hardly can recall when I started to notice that I was different. I guess when I started to notice that I was feeling uneasy with the temperature either inside or outside the house. Maybe when I was 7 or 8 years old?
As I was getting older I was feeling I had more difficulties to get along with my friends or some kind of activities in the summer time.
Everything went just fine for the rest of the year but it was a slow and hard process to understand that ED would shape my life in many ways.
The start of the summer season marks for most of the people, the beginning of things such as vacation, practice of some sports, go out in the open, etc.
SUMMER for me always had a different meaning. It always meant how to manage to have a normal life in that season. When I was born, air-conditioning was not widespread as it is now in Spain. So, everytime I went out and felt hot. I had to run back to my house and had a cold shower or just have a bath in cold water. In other occasions, I had to lay on the floor to keep my body cold. I always made sure I was not far from home or make sure I had a plan B to keep myself cold if needed.
To be a teenager it is hard for everyone. When you are ED affected things get even harder. You know that your lack of hair, normal teeth will be a handicap. When you hear someone is depressed because that person has gained a kilogram… you think it can't be compared with your physical disadvantages.
But then, your personality develops in ways that I´m sure for other normal teenagers it does not. You start to feel you are being appreciated for your personality and in some cases you feel that some people love you as you are. Including your physical appearance!
Choosing what to study in order to find a job that will not pose any problem for the normal development of your life is another story. You just have to think well in advance… especially leaving in a hot South European Country.
I finally decided to study chemistry and thinking that if found the proper job, I would stay in room temperatures of around 20ºC. I would make sure that I would be able have a normal life even in the summer.
As a person that always wanted to get the best of myself…. I decided to study English in the United Kingdom. I left Spain when I was barely 18 years old and manage to learn and speak the language… even without teeth. That was a story… but I managed to put my dentures in there and be able to pronounce words correctly.
I returned to Spain and after working in different places. I found a job that would allow me to travel across the world. Europe, Asia, America and Africa included. I´m sure I would have never made it if air-conditioning would have not have been invented.
Life went fine for me after that and then, I met the woman of my life in a working trip in Bulgaria. It was love at first sight !
I told her everything that I knew about ED. I wanted her to be aware of everything from the start and then if she didn't like what she heard..i would understand. Even though, she made her mind up and left everything behind to live with me in Spain.
We´ve got married and after enjoying the first years of marriage travelling, etc. We decided it was the right time to have children. We took some genetic test and some genetic counseling. We understood that my children would be carriers but not be affected by ED.
My wife got pregnant of twins and everything went fine during her pregnancy. Our twins were born as predicted and all my fears disappear. I did not want them to go through all I went.
Now I am having a total different experience in my life. I´m an ED affected father of twins not affected by ED. I learnt how to manage myself to live with ED. Now I have to learn how to manage myself with children not affected by ED. Now I wonder how ED will shape our lives…
Thanks to all who have read this words and have been moved by them !
Remember…life goes on…
Written by jose1967, published 7 months ago.