My Malfunctioning Face

My cousin did a real good blog last year sometime on an operation that her mum underwent on her hands. As a result of the operation, like any other operation, she did not have 100% usage of her hands for quite a while. It’s amazing what effects not having control of one’s hands are. Anyway, I think her hands are now normal, which is pretty awesome 🙂 Go check out the blog though: http://starfishbowl.wordpress.com/2007/02/08/my-mothers-hands/

Over the last few months, it’s become quite apparent to me how important your senses actually are. The senses are vital for our survival and that if we lose any sense, it can be pretty catastrophic.

When I was a kid, I suffered from a pretty common ailment know as Hay-Fever. Basically, it’s clogged sinuses meaning that you have a runny nose and are allergic to everything! If you encounter anything that you are allergic to, then your nose starts running. Since you are allergic to everything, it logically follows that you always have a runny nose! I think everyone has experienced a runny nose when they had the flu – note that you can’t really smell much when this does occur. Yeah, imagine a childhood spent without the use of your smell because your nose is constantly blocked! Anyway, I did detail a rather extreme case of Hay-Fever. With me, I was allergic to a lot of things but a combination of medication and the fact that I wasn’t a severe case meant that severely blocked noses normally occurred only during the high-risk periods … you know, change of seasons and Springtime when all the marvellous pollen pollutes the air. Luckily, as my doctor predicted, I grew up and the Hay-Fever disappeared.

My family has a well-documented history when it comes to short-sightedness. Most members on my dad’s side of the family tree have glasses. So, as genetics dictates, I ended up with glasses. Oddly enough, my siblings ended up with perfect 20/20. Anyway, a few years ago, my optometrist realised that my eyes were deteriorating at a rather rapid rate as compared to what she would have expected. Luckily for me, she checked my eyes for a certain condition that she had done extensive research in and what do you know, she diagnosed me with keratoconus. This is a condition where your cornea is thinner than normal and as a result, does not have the normal shape. Instead of being spherical (well, a half-moon shape at least), the cornea ends up deformed with the maximum curvature being closer to either one of the poles rather than at the equator. What also happens, due to the thinned cornea, is that craters form. What this does is mess up your vision! And because of the nature of the actual condition, this also means that, in most cases, regular glasses cannot successfully correct your vision. In extreme cases, a cornea transplant is required to allow the patient to see properly. Again, as was the case with my Hay-Fever, I did not have a severe case of the condition! However, the condition is degenerative and if not picked up and treated at an early stage, you face the prospect of severely limited sight and a future cornea transplant.

One thing to note – have you ever heard of someone donating a cornea? Sure, people donate kidneys and livers pretty often but the chances are that you have never heard of someone donating their cornea. This does show one thing – the waiting list for this transplant is mighty long and it’s sad to imagine how many people are without vision because there is not a suitable donor.

Last year, I underwent two separate procedures to help stop the degeneration of the condition. I was pretty impressed by the method mind you – it really is pretty cool how it happens. The procedure is called Collagen Cross-linking with Riboflavin. Yes, it is the collagen that they use for botox! And yes, riboflavin is indeed Vitamin B2! And no, I did not go for a botox injection and a Vitamin B2 injection! The procedure is a non-surgical technique that gets the five layers of your cornea, which are made of collagen, to intertwine and cross-link thereby strengthening your cornea. Think about a three-stringed plait and how much stronger it is than the three pieces of string that it is composed of – this works on the same principle. This procedure, being non-surgical, does not involve the ophthalmologist separating the five layers with a scalpel and then plaiting them together. Rather, several incisions are made on the lens, and then riboflavin drops are introduced onto the eye over a half an hour period. After this period, the eye is “baked” under a UVA light for a further half an hour. Seasoning and parsley are then tossed onto the eye and voila, a tasty meal! Okay, it doesn’t really bake but this UVA light reacts with the riboflavin and the cornea and the layers are intertwined into a cross-linked matrix. And yes, that is really awesome. For more information, check out: http://www.centreforsight.com/procedures/other/3-cr.aspx

The actual procedure is done whilst you awake and you have local anaesthetic applied to the eye. One of the most mind-blowing experiences I had was when the doctor scored my lens. As he did it, the lens shifted slightly and the world looked like it moved and then oscillated back into place. This was done with an eye-clamp – the type that forces your eyelids open so you can’t blink. This can be a harrowing experience. Try not blinking for a minute and see how your eyes and mind react. Now imagine this happening for an hour. Now also imagine that for the last half hour, you have to stare at a rather bright violet light. As mentioned, this whole procedure was mind-blowing and when you do stir from it at the end, you do need to step back and analyse what you just went through. Luckily, an hour is not a long time so no real permanent damage can be done. Au contraire, the eyes are now “fixed” in the sense that the cross-linking has strengthened the eyes and degeneration as a result of keratoconus is now a thing of the past!

For the next three days after the procedure, I experienced one of the most eye-opening experiences of my life. Well, okay, my eyes weren’t really open but yeah! As a result of the procedure, usage of my right eye (that’s the eye I did first) was severely limited. Although I could see in the broader sense i.e. if my mum was in front of me, I could see her; I couldn’t do simple things like read a book or newspaper. The blurring was so bad that even the figures on television were difficult to discern and watching television was a rather pointless exercise. All I had was my iPod. Although listening to an iPod is pretty good entertainment, when it is the only thing you can do, it does start effecting you! Other “normal” activities required great concentration and care – things like climbing stairs and eating food. Let’s not even talk about driving! We do take our eyes for granted – having eyesight is so important to just live. I can’t fathom what it would be like for someone who loses their sight in an accident – waking up in hospital and realising that they will never see their loved ones again, won’t appreciate nature’s beauty, won’t be able to read or reply to emails. I’m sure you have read lines like my previous sentence before but well, that is what happens and it is pretty scary. I was pretty lucky that my eyes did normalise and, now that the procedure has been done on both eyes, I have relatively normal vision although even with my new hard contact lens (which is able to correct your eyes better than glasses), my eye site is still not 20/20. But hey, I do have vision and I am very grateful for that!

I watched Cinderella a few weeks ago at the Johannesburg Civic Theatre. I didn’t realise that it was a ballet meaning that all it would be was dance with no speech. However, it was a brilliant performance. I’m wouldn’t call myself a fan of ballet but I did enjoy it. During the interval, whilst waiting to buy drinks, a couple joins the queue behind me. What made them special was that they (or at least one of them) could not speak. Unlike me, in order to ask the bartender for a drink, one of the guys had to type out his order onto his cell phone just so he could communicate with the bartender. As per usual with my rather overactive mind, I did start imagining a world where you couldn’t speak and had to find other ways to get a point across. Imagining only takes you so far and this past week, this mute experience became a reality. My body is apparently lacking a vital mineral and well, this has manifested with ulcers developing in my mouth – on my gums and tongue. Quite simply, if I ate correctly, I would be fine; alas… What has now happened is that I have, effectively, lost my ability to speak for a few days. Again, as with my eyes, this is temporary and within a week or so, I should be able to speak properly. And again, as with my eyes, it has made me appreciate the value of speech. There are the usual problems of not being able to communicate with people at work and if you go out with your friends, which I did, it really is pretty weird not being able to reply to any comments a they make. Travelling in a car is worse as, I have realised, banter within the confined environment of a motor vehicle requires both parties to actually contribute. My cousin is a chatterbox of note that never does shut up but even she had problems talking to me whilst we commuted as she received no feedback whatsoever! What did affect me the most was that without a voice, courtesy was thrown out the window. I couldn’t greet people when they greeted me, I couldn’t thank my aunt for the lovely supper she had made, I couldn’t engage in light conversation with the security guards, cleaners and shop assistants that ensure that the world works and I couldn’t even speak to my parents when they called me on the phone. A side effect of these ulcers is that they oddly sap a lot of the happiness from your body – much like dementors – leaving you irritable and slightly depressed. As I couldn’t talk to anyone about anything and all the courtesy I had was thrown out the window, this left me feeling even worse. Again, one needs to think about people, like the gentlemen and his partner at the theatre, who are unable to speak at all…

It is amazing how people do lead their lives not being able to speak and/or see. For these people, the raised profile and Braille on the 2009 South African election ballot paper is their reality and knowing how to effectively use sign language is not just a skill you put on your CV but the primary means of getting their thoughts out to others in the world. Thinking back to the ballet, although there was not a word uttered during the entire ballet, the story was beautifully portrayed and communicated to the audience. I guess humans are indeed fighters and any hurdle will be conquered no matter what.

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2 thoughts on “My Malfunctioning Face

  1. Hey Strange Thing —

    I hope you have regained all your senses by the time you read this. I actually watched “Black” for the first time on Sunday evening – so it’s quite a coincidence that you’re writing about losing your senses.

    If you haven’t seen it ,”Black” is a movie about a girl, who is blind and deaf (after an illness as a baby — which they didn’t say)… who finally learns about the world around her when she gets a teacher at the age of 8. Before she met her teacher (portrayed by the formidable Amitabh Bachan) she is a totally wild child, with no balance, no way of communicating with the world around her, has never learnt to speak, no concept of words and their meanings… I really highly recommend it.
    I found it particularly startling as she has her ‘input’ functions switched off – your eyes and ears — and now she had to learn to get ‘inputs’ in a totally new manner.

    Helen Keller first raised awareness about this condition in the 40’s – and she was the first deafblind person to earn a BA degree…
    All I can say it — how hectic is that??
    — That is simply breath taking!

    So, I hope you’ve regained control over your sensory IO (inputs and outputs) 😉 can’t get away from the ‘control eng’ lingo, even after hours.

    Take care,
    Kati

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