Today is my blind anniversary

 

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.

 

 

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55 Replies to “Today is my blind anniversary”

  1. Thank you for sharing your experience. I appreciate how personal it must be for you and that’s what makes it all the more inspiring. Happy anniversary! For not what you lost but all that you have achieved since!

    Liked by 1 person

    1. i’m glad it helps. One advice, from a person who’s got too much pitying looks – treat her like she’s still the same. don’t try to coddle her. and if you think there’s something she needs help with ? unless you are sure she can’t do it, then go ahead and help her – or if she asks for it, of course.

      Liked by 1 person

  2. Jina, thank you for sharing your story here. It moved me deeply. And how smart of your first toddler to already know your vision limits! I’m definitely including this one in my roundup for next Friday. Your spirit is very inspiring ❤

    Liked by 2 people

    1. he’s eleven now, and alot smarter. My daughter and youngest boy on the other hand took longer to understand, . I think it’s because they interacted more with others, and so didn’t realize that i couldn’t see until they reached three. Still, now that they do, when they don’t want me to find them, they know all they had to do is stand still and stop breathing!

      Liked by 1 person

  3. Hey Jina, Namaste 🙂

    A beautiful, devotional flower on your Gravatar and my gentle butterfly couldn’t resist a flutter-by and chance to say ‘hello’ 🙂

    Arriving here on your Blog feels a little like turning off a busy freeway onto scenic roads gently flowing through avenues of arching trees or meandering unhurried between fields of swaying daffodils. It is a very peaceful place to sit a while warming in your lamp-light.

    I am touched by both your immense strength, fortitude and courage as much as I am the notion of sadness when an anniversary comes around. Clear to me Jina is how compassionate you are with yourself, how generously accepting, and how in response you have embraced the totality of sight-toss and lived a rich and rewarding life. Of fascination to me is the relationship developed between yourself and your son: the bond of Love is overwhelming between mother and child…your son is an extension of you, you live in him: the relationship symbiotic and balanced so beautifully in grace.

    I admire your tenacity Jina, the sense of inner strength you always carry within you. I could not ever imagine how impacting in my life sight loss would be, nor if I could find strength of will like you to overcome it. That you have had a well of Love to draw on must of been a tremendous comfort, and your trust and faith in that bond unconditional. In many ways it is the perfect love, another symbiotic relationship, a marriage of independency and dependency: perhaps it is even the love we all dream of having one day. It is a beautiful experience to have shared, and your happiness a joy, thank you.

    Well Jina, Saturday night here in the UK rolls swiftly on towards midnight and I had best away until break of day for fear of being caught up in the witching hour lol 🙂 Thank you for being an inspiration. I trust your journey always brings you peace and inner happiness. Brightest Blessings for the week ahead.

    God Bless. Namaste 🙂

    DN

    Liked by 1 person

    1. Hi Dewin,
      I am touched with so many nice words. Life isn’t always kind, as i have been taught, things can be taken away from you so fast, without any notice. I am proof of that. So, why not enjoy all i have left and the beauty i can still have?
      Thanks for reading and leaving behind such inspiring words.

      Jina
      Ps: a wizard, huh?

      Liked by 1 person

      1. Hey Jina, Namaste 🙂

        That is my pleasure, thank you 🙂 You are an inspiration Jina, and I am inspired by you to reach a little higher, dig a little deeper, push a little harder, and live more mindfully with good grace and gratitude for all I have and all that is given to me by just being here on planet Earth. It is easy to take so much for granted without ever given it due consideration and worthy attention.

        Perhaps as well, I’ve come to realise more deeply how miraculous the human body actually is: not least in the way that it adjusts for a loss of one sense by heightening the sensitivity of other senses to become hyper-aware: you mention improved hearing for example. May I ask if your ability for inner visualisation has become heightened…do you have more powerful images, or dreams, are you more intensely stirred by thought and feeling than you were before sight-loss? For example, are you able to sense and readily acknowledge changes in atmosphere in a room with other people, do you get differing sensation when next to different people? I am sorry to be so inquiring, I hope you don’t mind me asking, I am genuinely interested to understand a little ore than I do.

        A wizard uh? Perhaps on a good day I might be. But don’t tell anyone, it’s our little secret, okay. As too the location of Castle Deeply Dewin 😉

        Thank you for a kind reply. I’ll look forward to next time.

        Take care, have a wonderful Sunday afternoon and evening.

        God Bless. Namaste 🙂

        DN

        Liked by 1 person

      2. That’s alright, Dwein, I don’t mind the curiosity at all. I did mention once in a previous post that i feel like i still have five senses, , because I’ve become highly intuitive after i became blind. not about the future, but about things surrounding me. perhaps the better word is instinct. As i was talking to a woman who also became blind in her twenties, she mentioned to me that she can ‘hear’ the size of a room, if she’s near a wall or solid object (she’d have to be standing still for that – or at least that’s how it works for me),the height of a person – when that person speaks. I am the same too. I don’t have better hearing, but i’m sensitive to the sounds. I no longer have the option to dismiss the sound of something that isn’t in my sight, because nothing is in sight – so i adjust, and i have to identify my surrounding by sound, taste and feel. . My dreams are normal, i see things the way a normal person would, although i’ve heard blind people who were born blind don’t have images in their dreams. i hope this makes sense.
        Take care,
        Jina

        Liked by 1 person

      3. Hey Jina, Namaste 🙂

        Indeed every word you have written makes sense, perfect sense in fact and I am most grateful for you to have shared so much. At each sentence I have paused and deliberated on my own experiences to find reference points to what you express. The ability to assess the ‘size’ of room through acoustics brought recall of my school days when sharing space within a purpose-built music auditorium and listening to various types of music. In time my ears adjusted to the most subtle changes that I enjoyed more easily with my eyes closed: my mind would then flow with the melody, reach more intensely to ‘listen’ and ‘hear’ variation. This experience served well when urban-adventuring at night with a photographer friend into derelict buildings. In pitch black with visual sense removed there was an immediate reliance on hyper-awareness to kick-in: the surge of something primal and long forgotten is quite an awakening moment and becomes an addiction of sorts. It is adrenaline of course, but the impetus towards hypersensitivity is most distinct and dare I say initially quite disturbing.

        I have known only one other occasion when I have been amazed by the ability of someone with severe sigh-loss (not blindness) who I was asked to train in a new job role at work. They had apparatus to facilitate the use of a computer, albeit in a very protracted and constricted manner. There was also a requirement for me to train them in Telephony operation. I had anticipated needing to rise to this challenge, indeed it was my first occasion in training someone with visual disability (as it termed here in the UK). As it turned out it was I who had to adjust my expectations and raise them higher. The lady not only had the most amazing memory for repeating highly complex and convoluted processes, but her ability to navigate her computer with the speed and accuracy that she did just blew my mind. I could not fathom quite how she did it until she explained that since her ‘sight-loss’ she had developed an almost perfect memory recall that included vector and speed of motion when using a mouse and needing to move it on an application. In addition, and similar to yourself, the lady had an acute sense of hearing, not improved per se, but sufficient to acknowledge small sounds otherwise not processed within the ‘normal’ spectrum. My time spent with her was far more an education for me than it was for her. I felt that I had been blessed with a small sense of wonder.

        The key word you’ve used is perhaps ‘intuition’, and that I understand more easily as an innate and powerfully guiding sense. Intuition has certainly saved me on at least four occasions when something bad could have happened…not precognition, more a feeling of certainty that danger abounds strong enough to pause forward motion. Regarding people, I am again curious to ask if your intuition extends as a field around you and has further reach now? In combination with a discerning ear, do you pick up changes in people’s moods more easily even if they are quiet? I often think people somehow extend their inert thoughts outside of themselves to affect the immediate area around them. Does your intuition pick on discordant vibes? I recall having worked at a Contact Centre engaging with telephony work. I was informed that communication over the phone as opposed to face-to-face removes 80% of the information used to fully process this encounter. In that way, Telephony work is blind and highly effective communication (primarily listening) becomes paramount to mutual understanding. After 7 years speaking with thousands and thousands of people from different walks of life, I could with a high degree of accuracy sense their manner, mood, intention, and expectations just by the way they said ‘Hello.” It intrigues me how focused the human mind can be and what it is able to bring forth when engaged in an intense experience.

        I am also fascinated by your mention of dreams. In some way I had imagined they might be more lucid, more frequent, richer in colour and more varied in context. I wondered if the mind also compensated visually for lack of fresh input when dreaming by being more inventive, more creative, deeper, more involved, more freestyle or wild, chaotic etc.

        I’m sorry, I seem to have prattled on a little long Jina, apologies for that: my fingers have this habit of doing their own thing on the keyboard and finding more words when my thoughts have quietened. I hope you don’t mind.

        Thanks for the discussion. I’ll leave you to the peace and quiet of a cosy Sunday evening. Take care of y’all.

        God Bless. Namaste 🙂

        DN

        Liked by 1 person

      4. Hey Dwein,

        First, my dreams are as normal as they used to be. Sometimes i dream that i’m blind, but in my dreams, even blind, i can still see things. On the computer front, i’m no faster than i used to be. I don’t use the mouse’s cursor, only keyboard functions and hot key combinations. About being able to disearn someone else’s mood by the tone of their voice, i’ve always been an observant person, so i could always tell. perhaps it’s sharper now, i’m not sure. I do remember though, following the days when i became blind and could no longer see the lips moving, i had difficulty understanding what people said at times – does that make any sense? It was only for a while, but i believe that a part of me was depended on the lip motion once. On the intuition part, still the same, i guess.
        I’m leaving here my e-mail address if you have more questions: jina.salameh1@gmail.com
        until next time, Dwein,
        good luck with the castle

        Liked by 1 person

  4. OMG you are really brave! Hats off to you, handling 3 kids with a perfectly normal human body is in itself a task and the fact that you do it with your senses, will power and energy! It’s commendable! More power to you! ❤❤❤

    Liked by 1 person

  5. Your courage is inspiring. I lost sight in my left eye for one month and that was frightening. My friend Janet Perez Eckles lost her sight while her children were small and she raised three boys. She is the most amazing woman I know. She has a blog too, janetperezeckles.com She was born in Bolivia and moved to the US as a young teen.

    Liked by 2 people

  6. Of course the harder you work, the luckier you get. I try to imagine my brothers taking care of me at any age and it wouldn’t happen. That is what I really admire about many Middle Eastern families: they do take care of their family.

    Liked by 1 person

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