Let’s be extraordinary

As a kid my mom used to tell me: «You have to be the number one!».

I suppose we all are raised to be number one… only that maybe we are not told what we have to be number one in… As a little girl I supped I had to be number one in my job, as whatever I studied at uni. But never thought I would have to be the number one in just taking care of my health because of lupus.

I never thought I would have to be number one in adapting to some of the things I had to adapt to. I am sure my mom thinks the same :p .

As I do everyday, after a long working day at home, and after publishing a couple of articles and around 20 twits for the assoactions I collaborate with, I was ready for my morning reading: some 15 news and health related sites, blogs and politics in order to be up to date and to start learning about the healthcare system and situation in the United Arab Emirates and Dubai.

Everything has stopped in a sudden when I have read a couple or articles about the death of Jano Galán.

Jano Galán: an extraordinary man

I met Jano Galán not long ago… doing some research about resources for people with amyotrophic lateral sclerosis (ALS), and he inspired me. He was one of those people whose life shocks you. Not because his life was a hard life but because of the way he has confronted adversity.

In the same way we all do everyday, I was looking for health related info that day. For personal reasons that are not important right now I was looking for e-health resources for people with ALS.

What is important is that I found Jano through this video I want to share with you. I don’t have ALS and I am lucky because I don’t know when I’ll die… but I expect it to be when I am old.

However, listening to Jano I identified myself so much and I learnt so much that couldn’t help crying… Just like now.

Everyday silly things go viral. Today I hope this is what gets viral. Because. Just because.

«I, that thought that I was a normal guy.

I had my kids, mi wife, mi family, my friends…

I also had my job, my hobbies, my projects…

my hopes…

I even had my achievements!

I thought I was the owner of my life

and of the things of my life

I believed that my life was mine…

How naive!

I had everything but I didnt’t know it.

Now I have ALS.

I am 37 and very very soon I am going to die.

I was really angry with this…

I cried…

I cried a lot and I felt a deep sorrow for myself.

I felt lost in the middle of the dark;

I dived into the deepest caos…

into the most horrible of my nightmares.

¿You know what?

I thought that I had the answers for almost everything…

however, in that moment, all my questions had changed.

What have I done to deserve this?

What do I do now with my dreams?

Why just now?

Why me?

Why like this?



I don’t know why, but it doesn’t matter now.

What matters is that I have realized

that it was me who I really was angry with…

Why didn’t I give my 100%?

Why I kept the best of me to myself?

What was I waiting for?

Why I remained in silence that day, when I wanted to shout?

Why I gave up so early… when I still had strengh?

Why it was more important to do what was correct rather than doing what I really felt?

Why it was more important to keep a good image than to give a good hug?

I was in life, but with closed eyes…

groping blindly.

I had forgotten what was really important for me…

I had forgotten who I really was.

I am a normal guy and I am going to die.

That is something that happens everyday and there is nothing I can do to avoid it.

But I am not going to conform with that.

I want to be extraordinary

and I am going to be extraordinary.

But not because of the way I will die but because of the way I live.

With effort, will, help and love I will learn and keep on learning and enjoying:

– The first rays of the sun in the mornings,

– The games and the laughter of my kids,

– The warm and soft company of my wife,

– The timorous hug of my mom,

– The pain and tears of my dad’s eyes,

– The smiley talk of my sister.

Now I have my eyes opened

and I will recover the meaning of the words «I love you» among my friends.

I can see that life is not something that belong to us.

It is not about living like if the world was ending tomorrow,

but if today was the last day of my life…
Would I be happy with the way I have lived?

I am done with surviving.

Life is a gift and we must be thankful and feel fully.

My life is not mine anymore, but it is now that I start to live.

(Jano Galán, 2014)

I am lucky… because I have lupus. And the research and developement, the resources and the treatments I can have give me hope and a life that other patients can’t have. Just because they have a rare disease or a disease with no treatment.

I am lucky because I don’t know when I will die, but I know it will be long from now, when I am old.

Today my world stops so that I can give this humble tribute to one person that deserves a monument… but of whom you will not hear about in the news.

You wanted to be extraordinary, Jano, but the word extraordinary is not enough to describe you.

I met you late, but in only 2 minutes you have taught me more than what I would have learnt in years. Thank you for dedicating your time and energy to help and educate.

We definately need more people like you. RIP.

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