The story of Robert
Hi!
My name is Robert, I am 35 years old and I love life! And how do I see life? First of all, I can say that “Life” is an extraordinary thing, perhaps the most beautiful gift we can receive. It’s a kind of a given right received, but at the same time a responsibility. That is why I believe that we must live in such a way that through our deeds life should have a “superior quality”.
By the way, I forgot to mention, I suffer from a rare disease, spinal muscular atrophy, or as it is also called or known SMA Type 1, but this has never stopped me from dreaming and live my dreams !! In life you always must to have dreams to follow, and before dreams you must to have steps to achieve… Talking about steps, I never managed to walk on my feet, altough when I was a kid, I dreamed to become an F1 driver or footbal player, to play in the midfield and coordonate my fellow team mates…you know, like Pirlo or Xavi. I didn’t have a chance to walk, to “fly” freely, but that didn’t stopped me from continuing the existence of my childhood, being often motivated by my mother’s words, and she told me: “If God took the strength of your feet, you can only look up and do not forget that He has given you wings in return ”. I didn’t understand her taughts fully at that point, only later in my life I realized that those wings are my familly, my friends and all the people who helped me to become what I am today. So I didn’t become a footballer, or an F1 driver and soon, as I grew up, I began to realize, that this was not the plan of the divinity as far as I was concerned. So, I realized that life is actually a question from which I detach many others: “What is life? What role do I have in it? ” These are simple questions with difficult answers, but they kept motivating me to push harder and never give up! To demonstrate to myself that I am the one who has a role in his life, not the disease.
As a kid, I used to think even if I’m in a wheelchair, I want people to know who I am, by the fact that I will realize or I will leave something behind me, to change people’s thinking and attitude towards those who are suffering from a disease. So with small steps, but confident and balanced, you can get far, where your dream is lights up. In this way I finished high school, I graduated college, and formed an association for those who are just like me and found a job in the IT field. I’m happy that trough my association we are able to organise summper camps designed for youngsters sufferinf from a rare disease.
I never liked to complain, even if I suffer from this serious illness, which is approaching me with a slower pace to the end of my journey in this life. Still, I think about how lucky I am that I have this disease, it all depends on how you look at it, as a curse, or as a blessing. That’s just like the rivalry of great athletes, which makes them exceed the limits of which maybe they didn’t even dream. One of my many dreams, was that of being able to tell my story in a book. I managed to fulfill this dream with the help of my friend Daniel Țole. So in the book called “Beyond Appearances” you can read my life until the age of 30, doing that you will have the opportunity to get to know me better, to see through my eyes wonderful places, to live thousands of emotions and to have the opportunity to know the passion that I have for my life.
I often wonder, when I have darker thoughts: “If you didn’t have this disease, would you have been the same?” May come the hypothetical answer, that no, life would have been much better, beautiful, I would be far from all points of view. But let’s be honest, people do like to believe, to see only the good things, but there are always negative parts of these things. And I tell myself, maybe I never would become who I become, if I were healthy, I couldn’t really get to know myself. Never meet all that good people in my life. I received the disease as a gift and depended on me largely how I played that card, it’s like poker, the one with two aces in his hand doesn’t always win.
In life you always have to have dreams to follow and before make them a reality, you will have to perform certain steps. Don’t you get upset when the person next to you manages to do some things better than you, he has a life, and you have yours. Rejoice for that what you have achieved and next time try to outdo yourself. Focus only on your life, even if it makes you think of being a selfish. How could you give love to others, if you’re not capable to love yourself? I think this is where the problem of those in my situation, because they are not liked, they are not accepted as they are. Then how do you like the one next to you, when you are the abyss that it prevents them from advancing in feelings. I was never ashamed of me, of my body, of my existence, and that helped me enormously for a long time.
Sometimes I’m afraid that not all my dreams will come true. I want to have three girls, thinking realistically, it’s hard for me to find a soulmate, but that will doesn’t stop me from fighting for this wonderful dream. Just like my dream to be able to build a camp for young people with disabilities, where to be able to have a large numbers of participants from all over the country. I’m not extremely clear on how to achieve this dream, but I will I continue to fight, to see it as a much needed reality. There are worse days, but it’s enough for me to think about the beautiful days to come.
So, in a short, this is my story, and I always found myself in this quote:
“And so you touch this limit, something happens and you suddenly can go a little bit further. With your mind power, your determination, your instinct, and the experience as well, you can fly very high.” Ayrton Senna – former F1 champion.
P.S. To this quote I would ad, also with some faith!
*Find others with SMA on RareConnect, the online platform for people affected by rare diseases