My Stargardt

I’m here to tell you the start of all.

It all started about eleven years ago. I had to change schools because the one I was attending to was far and more expensive than the one I was getting into (in Brazil, if you want to have better chances of getting into a good college and get a better education, you have to pay for schools. Not that people who won’t pay are not good enough, it’s just that their chances are not always the best, since the government does not invest in education – it’s not the priority).
After about three months of this very new routine, new people, new everything, something very much new in my whole ‘alive’ experience appeared in my life: the actual realization that I hadn’t enjoyed my vision as much as I should have up until that moment.
I started having trouble seeing things from far, even when I was wearing my prescription glasses, made two months before.
I made good friends. They had patience with me and helped me out. And that went on and on… and after three more months, I really did not see anything a teacher would write on the board anymore.
My parents started getting worried and I started having all kinds of tests at a regular ophthalmologist office. But nothing would seem to help me see any better.
After probably all types of exams and tests my doctor could do, he ordered some ‘higher level’ tests. And there I went, thirteen years old, with a whole life ahead of me, and so much I didn’t know about life and the s**it it could turn out to be.
Contrast running through my veins and some pretty scary CTs and other kinds of examination of my Retina and everything that was connected to my eyes – and yes, I’m scared of CT’s or other ‘head holding’ stuff – there I went, to see what was wrong with me.
Doctor M. found some unusual results for my contrast examination and indicated me a Degenerative Retina Disease Doctor. The “GOD” of all doctors in this field.
This new doctor (R.P.) told me everything I DIDN’T WANT TO HEAR. Every word that came out of his mouth changed my whole life. Not that it was his fault, but he was the one who explained everything to me and my parents and no one could contain the tears between us- me, mom and dad.
The doc is probably heartless, plus, there is the fact that he might give bad news to at least one family a day. Don’t get me wrong, he is a great doctor, but he could not do anything to help me. And he is either too used to seeing people suffering right in front of him and not feeling a thing or he is just sick. Which, in both cases is weird and not really acceptable in my mind. He doesn’t even say “I’m so sorry for this happening to you”. NOTHING.
This doesn’t really matter anymore… He had enough information to know how the exams and tests work, to find out what disease I have. At least I had a diagnosis.
I had to go in this very tiny room where I saw a globe with a space in it – that I found out later it was for my head – and also it was the most traumatizing thing in my life – and a computer monitor.
I stayed about half an hour with my eyes completely covered, then I did a Topography, which is an exam to know everything about your cornea.
Then it started: straight to the monitor. Weird images I could hardly explain or describe them. It’s kind of like those optical tests in which you have to look at the center spot and there are white and black circles around it, each one larger than the other, and if you look in the very center, you have the feeling that it’s moving. Yes. That’s definitely as annoying and uncomfortable as that.
So yes, I did that for about HALF AN HOUR. I think I fell asleep with my eyes opened. I really wanted to die, so horrible it was. But I didn’t know what was coming… The globe was there. Just waiting for me. Although I have to say… The first time wasn’t as bad as the second, though. We’ll get to that.
So after I was done with the first torture, the ‘eye nurse’ – is there such thing as an eye nurse? – came to move me and tell me how this globe worked: I had to put my head in it, and there were three little spots, where red light would flash out from, and I had to follow them wherever they would go. These light didn’t move in a set. It just would go randomly from here to there and I had to be going with ’em.
So it started. My head in. Everything white. And those three annoying spots. After that one, the nightmare: The “rain of lights’ as I called it when I was 13… This out-of-the-blu lights that were so bright I couldn’t even open my eyes – but I had to keep them open!!! – and they would just come from anywhere.
After that, I was done. About two hours of non-stoping torture of a young teenager that had no idea of the hack that was going on.
Results: Stargardt’s Disease: A degenerative Genetic Disease in my Retina, with no cure, no treatment, no expectations and could get worst by the day. And it wasn’t even up to me. Only my body would decide. Would I get blind sooner or later?
It is the hardest thing that has ever happened to me. Can you put yourself in my shoes for a minute and imagine if you had to first go through all those tests, and then, hear that you will never see normal again and it could get worst no matter what you did?
My life turned upside down, and it was just the beginning. I
didn’t know what to do, or what to think and if I had to explain it to someone, they would just say “and your glasses won’t help?” or “can you wear contact lenses?” or “ah, ok”… They never knew or had a clue of what my new life looked like and I suffered terribly because no one understood me. Or at least talked to me and tried to understand and respect my non-describable traumatizing situation.
Until Diego…

And that is a story for the next glass of wine (or post!).



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