The last time I left my home alone without any assistance happened ten years ago. It was on 24th of July, when I made the trip down to Rio from Miami’s international airport.
We drove down from Tallahassee to the airport, because I refused to take connecting flights alone with a baby. I wasn’t used yet to the need of holding on to someone to go anywhere, so we drove down to the airport – about eight hours away. Whenever I needed a break – or the baby needed one, we’d stop by a restaurant, and I’d pick up my baby and take him with me to the restroom alone, change his diaper and return to the parking lot, where my husband would be waiting for me.
My sight at the time was around 235/400 (I’m not sure how that was measured), but I could see only light and shadows on my right eye, and only on my periphery on my left. Whenever I went somewhere, I’d move forward, though I’d be looking to the side (because when I looked to the side, I could see the path ahead).
But I had cataracts, and so everything was nebulous.
My two brothers picked me up from the airport, and while one took my baby (the only baby in the family at the time), the other took hold of my hand. That was the first time I held on to someone for guidance, and it felt unnecessary to me, even if holding on to him, I could move with an ease I hadn’t felt in a long time. There was no fear of stepping on a hole or of bumping on a pole that appeared out of nowhere.
I went to see an ophthalmologist the very next day. My eye pressure measured 53 on my left, thirty something on my right (normal ranges from 10 to 20, anything lower than 10 and there’s the risk of a retina detachment, anything higher than 20 and it damages the optic nerve).
I was already using three different types of eye drops to reduce the pressure, plus some pills called diamox that made everything I ate taste bitter. The plus side was that I lost some extra weight.
I was scheduled a surgery – glaucoma and cataracts for my left eye in two months. It was the eye I depended on to move about, and the pressure was much higher there. When I asked for something sooner, the doctor told me that this was the soonest he could fit me in his schedule, that he’d usually schedule something that wasn’t an emergency for six – eight months. I wasn’t happy, but I didn’t sense like waiting two months would affect too much, since the cataracts had started more than a year and a half earlier, and I’d had glaucoma for almost nine months.
At the time, I had believe that the milkiness in the peripheral of my left eye had been the result of the cataracts – which it was – but it was also because high eye pressure causes the optic nerve to dry.
I’m not sure when my peripheral vision became completely white and I could no longer see anything. But I finally underwent the surgery on October 18th, 2007. My eye was covered for that entire day, so I couldn’t tell if the surgery had worked or not.
The doctor who operated my left eye told me the small cylinder and tube he had inserted was functioning perfectly, and already my pressure was better.
I went home the next day, but everything was still nebulous – I could see shadows on my peripheral, the contrast of vibrant colors. But when I went for my next appointment a month later and asked the doctor why was everything still white, he told me it was the result of the high pressure and that I had an atrophied nerve – which is a dry, white optic nerve.
Unfortunately, there was no treatment for that. As the days passed and the pressure lowered, I kept losing more and more of my periphery, until I could only see strong light and a color contrast, red against white, or white and black, etc –only on a fraction of my peripheral.
It was then that I realized that no, I wasn’t going to see again.
My baby had just turned one year old, and he moved like a bullet – he ran actually, he didn’t walk. But he was a sweet baby, and because he grew up with someone who bumped on walls, moved with eyes closed (I was really sensitive to light), and had to touch everything, he understood, even before he turned two, that I couldn’t see. He thought everyone was like me, and whenever he wanted to hide something from me, he’d place whatever he held in his hands – chocolate, cookies, knife on the floor and press his empty palms to mine.
One plus about being blind and having little kids – I have three now – is that my senses are very sharp. I know where everything is, where everyone is. There’s no sound in my home that I don’t recognize (if there is, I keep searching until I discover it and commit that sound to memory), no smell I can’t decipher, no kid I can’t account for – unless they are asleep somewhere, which is highly unlikely, my kids hate to sleep and lose time they should spend playing.
I don’t talk to my family about this, it makes them sad, and that’s not what I want, so I thought I’d post it here. Every year on this day, I’d remember that trip down to Brazil, the surgery, the days following it, though those days aren’t too clear in my mind.
Well the point is, the moment I told myself I could do it, I realized I didn’t need my eyes to live a fulfilling life. Does that mean I don’t care for a cure? Of course I care, every now and then I go online to research the stem cells studies, and they look promising, more and more every time. I don’t read the price of a treatment, I know they are highly expensive, but I know I will do it one day.