Sep 13, 2013 - 3:08 pm
Hi I'm Matt
31 year survivor. My dad had the same thing so my parents had me at Childrens Hospital in Boston undergoing radiation treatments at 3 days old. They got it and I have both my eyes. I am grateful for that. However, the bones in my eye-area and temple area never fully developed leaving me disfigured. I'll say it has not been easy to deal with for me. The constant staring and whispers amongst passerby's is, at times, unbearable. I often delay going out as long as possible because of it. It's easy to say "I don't care what other people think of me" but oh so much harder than that to not let it get to you. Those close to me tell me I'm a handsome man but I've never seen it when I look in the mirror. And at this point in my life, doubt I ever will. It affects EVERY part of my life. Anywhere I go and anything I do I'm reminded of what I cannot change.
My son is one of the few things that keeps me from crawling under a rock. He is now 7, did not inherit the gene and we consider that a miracle. I look at him and see what I might have looked like. He gives me strength. I have taught him respect and when he is older I will explain things better and let him know that he is a miracle and to never take anything for granted.
My father also had this cancer monster. His wasnt caught until he was a few months old and he lost an eye. 3 years ago he lost his vision completely due to complications from his radation therapy as an infant. 1 year ago he was diagnosed with a tumor on the side of his head threatening his brain. They got it out in time and it was not cancer. Thank you Tufts Medical Center! These past few years have been rough for our family.
I hide inside the feelings I have about the fact that I will probably experience my fathers complications as well in the future. What little ambition I had to really do anything ..... my drive to be something in life, is now, practically down the toilet. It's sooooooo hard going through every day wondering when something will happen ? Will I go blind today ? Will I get a sudden artery collapse ? When will I discover my next tumor ? It KILLS me inside.
I'm not looking for sympathy here. I just want to get these words out somewhere. Perhaps someone who reads this knows of what I speak.
Positive thoughts to all of you