A Speed Wobble By Any Other Name ....

If you've read my blog post from last November you'll know about my little Ginga Ninja, Tony, and the challenge of his Nystagmus and his ADHD.  Treatment is going ahead for the ADHD, and while I'd like to say that he's a very cool, calm, collected young boy now, he wouldn't be Tony if he was. As he pointed out a few weeks ago, "I'm not a 'calm-down' kind of guy!"


However, we decided, after our visit to the Pioneer School for the Blind in Worcester last year, that we wanted a second opinion on Anthony's eyes.  We finally got to take him to Dr Galloway in Wynberg (Cape Town) on Monday, and he tested for - and confirmed - that Anthony has something called Ocular Albinism.


This may be the first time - like it was for us - that you have ever heard of this condition, and you may be wondering what it actually is.  Here is the definition from the National Organisation for Albinism and Hypopigmentation (NOAH) :

Ocular albinism in an inherited condition in which the eyes lack melanin pigment, while the skin and hair show normal or near-normal coloration.

The lack of pigment in the eyes causes various vision problems:

• Reduced visual acuity from 20/60 to 20/400 and sometimes as good as 20/25 in African-Americans, 
• Nystagmus - involuntary back-and-forth movement of the eyes, 
• Strabismus - crossed eyes or "lazy" eye, and 
• Sensitivity to bright light and glare. 

The reduced visual acuity may result in difficulty in school, such as inability to read what is written on a chalkboard except when very close, and difficulty with ball sports. It may also result in inability to drive.

With ocular albinism, the color of the iris of the eye may vary from blue to green or even brown, and sometimes darkens with age. However, when an eye doctor examines the eye by shining a light from the side of the eye, the light shines back through the iris since very little pigment is present. There may be areas of the iris which have very little pigment.

The main problem with the eye in ocular albinism is in the fovea, small area of the retina which affords acute vision. With ocular albinism, the fovea does not develop completely, presumably because melanin pigment is needed for the growth processes that normally occur before birth. Therefore the eye cannot process sharp light images. Because the fovea does not develop well, it is difficult to correct vision completely with glasses.

Another defect in ocular albinism is that nerves from the back of the eye to the brain do not follow the usually pattern of routing. From the normal eye, nerve fibers go to both sides of the brain, that is, the same side as the eye and the side opposite from the eye. From the eye with ocular albinism, more of the nerve fibers cross from the eye to the opposite side of the brain.

Basically, after giving Tony what everyone would recognise as an eye test (chart with numbers/letters), he put drops in Tony's eyes and sent us off for half an hour (good chance to get coffee and Google Oculur Albinism!).  When we came back, he took photos of Anthony's eyes with a specialised camera, and the photo looked something like this:

"Those main blood vessels you see there are the main veins and arteries carrying blood to and from the heart.  Do you see those other, fainter blood vessels?"

"Yes"

"Well - that's the problem - you're not supposed to!"  He then proceeded to show us a photo of a normal eye, which looks something like this:

Remarkable difference, isn't it?  That coating is the pigmentation melanin, and it's what filters the light coming into your eyes. Without it, there's no light filtration.  

Let me clarify that Anthony is NOT albino - that's another condition altogether.  Someone who has albinism has no pigmentation in their skin, hair, eyes at all - Anthony has very strong pigmentation in his hair - that beautiful strawberry blonde colour is what some women pay thousands for every year!  He has the bluest of eyes, and though his skin is very fair, it's only slightly paler than usual.

However, as stated above, this condition does lead to vision problems, and Anthony will always have glasses or contact lenses. His sight will not improve.  In measuring his vision, Dr Galloway believes Tony's sight to be in the region of 50%. But the good news is, it won't get worse either. The doctor's advice was to keep him in mainstream school as long as he flourishes, but to bear in mind that it will get more difficult in the higher grades.  I decided to ask a question that has been on my mind for a while, and asked if he would ever be able to drive.  The doctor's reply was that he'd rather prepare us for the worst now, so that anything else is an unexpected surprise, but he believed with Anthony's level of vision, he would not ever be able to learn to drive.

So that's where we are. Does this affect Anthony?  Not at all - he's the same happy-go-lucky child he always was.  He'll quite happily go up to a complete stranger and announce proudly "I have a nystagmus! My eye wobbles!"  Or to another (with a huge smile on his face) "I have ADHD - and so does my best friend!" That's just who he is - ain't nothing gonna break-a his stride, nobody's gonna slow him down - oh no! He's got to keep on moving!  

With the amazing school he goes to and its teaching staff, nothing will change there either. He is already sitting right at the front of the class, with an angled add-on to his desk, so that he's not looking directly down and working in his own light. He works with 2B pencils, not HB, and luckily the print in his readers is big enough for him to see.  He gets high marks for English, Maths and Science. He has an analytic and logical mind, so he loves the problem-solving queries he has to deal with. He soaks in information like a sponge.  In short, he is more than flourishing, he's excelling.

Here's the thing.  When, years ago, I was told that Anthony's nystagmus was the result of muscles not having developed properly, I got to thinking "What did I do wrong? What didn't I do?".  However, on reading up on Ocular Albinism, it comes from the X-chromosome, so at conception there was a 50-50 chance that Anthony would get it. And he did, while his brother Andrew didn't (it generally affects boys more than girls). So here's the way I'm looking at it.  God decreed from the moment that those cells split that Anthony would have Ocular Albinism.. Why? Because He has a massive plan for his life.  "For I know the plans I have for you, says the Lord, plans to prosper you, not to harm you; plans to give you hope and a future" (Jeremiah 29:11).  At this stage I don't know what Anthony's future looks like. What I do know is that it is bright.  He's a super-bright child, a total science geek already, nerd deluxe - he'll take anyone on in a quiz on Doctor Who, Star Wars or Harry Potter.  His Grade 1 teacher already said he will grow up to be a writer - either of fantasy novels or of computer programs. I could honestly believe that.  

Did God make a mistake when Anthony was conceived?  Was this just a freaky accident of nature?  Not at all.  I believe God was very intentional in this.  In thinking about it all on Monday, the only verse that was coming into my mind was "I am fearfully and wonderfully made" (Psalm 139:14) All those intricate things that go into making Anthony who he is INCLUDED the "speed wobble" that he has, and his superdrive.  He is the first to "walk across the room" and introduce himself to new people. He is not in the least bashful, and has no qualms about his conditions.

There are many challenges ahead for Anthony, and many questions that have arisen, but this I do know - this  condition does not mean the end for Anthony.  It is a new beginning, and one from which he will spring to entirely new levels of achievement.

Finally, if anyone does know of any support groups here in Cape Town for Ocular Albinism, and if anyone has answers for me on the legal applications (like can/should I register him as officially visually impaired, what is available to help him - physically, emotionally and financially?) then please, please get in touch with me.  

Please stay tuned - I have a feeling there are going to be many chapters in this story!

Breaking chains

It was reported today that Abdelbaset Al-Megrahi passed away, with his family round his bedside. Some of you reading this will wonder what on earth this has to do with anything, and the name will mean nothing to you. Unfortunately, the name conjures up all kinds of reactions in others, depending on where your sympathies lie. Al-Megrahi was convicted of having planted the bomb on Pan Am Flight 103 on December 21st, 1988, and causing a 747 to break up over Lockerbie, Scotland - my home town.

The Air Disaster memorial in Rosebank Cresent, some 50 m from my childhood home. where the galley section ploughed into a group of four houses.

Taken from the memorial - my house is on the right, where the fourth car down is parked

A number of status updates I've seen today from Lockardian residents include things like "at last, some happy news!" and "good riddance!".  Despite the fact that we - like everyone in the town - were impacted by the atrocities of that fateful night, I just can't feel that way.  In the same way that I felt the celebrations of Osama Bin Laden and Muammar Gaddafi's assassinations were, though understandable, as wrong as the anti-American celebrations that were held in Libya or Palestine after the bombing of flight 103 or 9/11, that's the way I feel about celebrating the death of Al-Megrahi.  I just can't. But by the same token, I don't feel sorry for him at all. At this point, I don't know how I feel.  

What I do feel, has nothing to do with Al-Megrahi at all. Not really.  Because in dealing with things like the Lockerbie Air Disaster, we're faced with an issue called "Forgiveness".  That's what the real issue is here.  It's easy to hate. It's easy to blame. It's easy to demand justice. It's easy to celebrate what we determine is someone's just desserts. That's human nature, and it comes easily to us all. But while justice has a very necessary place in the world, if all we did was mete out justice and seek justice for all those that had wronged us, the world we lived in would be a dark, fearful, legalistic place. Not only would we spend our time scrutinising people to accuse, we'd live in fear of being accused, and the retribution to follow. The reason it isn't like this is because of forgiveness. With it, we can begin to move on. Without it, at best we are impossible to live with. The worst is far more dire and horrific.


C R Strahan said "Forgiveness has nothing to do with absolving a criminal of his crime. It has everything to do with relieving oneself of the burden of being a victim--letting go of the pain and transforming oneself from victim to survivor.”  That is very true.  While you hold on to the pain of whatever offence has been committed, you can never be more than a victim. Is it easy?  It's the hardest thing you'll ever do. And it's a choice that only strong people make. As I said, it takes no brains at all to hang on to the grudge. It is a wilful choice to let go and to forgive. Unforgiveness leads to resentment, which, said Nelson Mandela "is like drinking poison and then hoping it will kill your enemies".  All these 23 years we've been resenting Al-Megrahi - do you think our anger has made one bit of difference to him? No? Here's the question - what has that anger done to you?  

Don't hear what I'm not saying. If people are guilty of an offence, of course there should be consequences and the justice systems (hopefully) would see to that.  However, even if not, it's not our place on earth to act as judge and jury for every inhumane act against everyone else. Yes, step in where you can, and bring people to justice. But to hold on to anger against someone for years and years and years will change nothing in the situation, and will certainly do you no good.

I watched a programme tonight called "Final 24", on the last day of Gianni Versace's life. The gunman was an obsessed fan by the name of Andrew Cunanan, who had (according to this programme) been unintentionally snubbed by Versace at a party in Los Angeles.  Cunanan never forgot the slight at all, and seven years later  he followed his fallen hero to South Beach, Miami and shot him twice, killing him with the second shot. Seven years of holding a grudge.  Seven years of going over and over the internal pain. Seven years of hate and anger. And eventually it all became too much.  Seven years later, Gianni Versace was gunned down by a total stranger whose intense hate emanated from an offence years in the the past, of which Versace was totally and completely unaware and unaffected.

Jim Beaver said, "Forgiveness is not something you do for someone else; it's something you do for yourself. To forgive is not to condone, it is to refuse to continue feeling bad about an injury." Forgiveness in many ways has very little to do with the other person, and more to do with you.  That we hold onto our grudges says way more about us than it does about the original offenders.

Do we need to necessarily physically have to confront someone and say "I forgive you"?  I battled with this one aspect.  But if you realise, as I said above, that it's more about letting go, then it really becomes a conscious decision to release this offender from your thoughts, to treat him/her as if he/she were no different from the next person.  You see, if they haven't admitted guilt and repented, then you saying to them "I forgive you" would be a pointless exercise, and would probably only serve to stir up more anger. In many ways, forgiveness is purely a heart thing, more than a physical thing.

And I really believe this is what Jesus was getting at in the Sermon on the Mount when he said "But I tell you, love your enemies and pray for those that persecute you." (Matthew 5:44)  Forgive. Make a decision of the heart. Where does love come from? From the heart.  But just as true love is not a feeling - it's a daily choice - it's the same with forgiveness.  Once you've made that decision, praying for those who are putting you through hell on earth becomes a little easier (Note I didn't say easy - sometimes it really is a physical battle!)

I'm not saying this because I'm in a perfect place on this. It does not take much to set me on a course of unforgiveness, or to feel "justified". It happened to me recently when someone I went to school with was complaining because someone was bullying his daughter. This same person used to bully me at school. It is so hard not to gloat at that point and to feel anything other than a sense of justice.  But then, what about the poor little girl?  Why would I feel happy about that happening to another girl, just like me? When does this circle end? Simply when I choose to break it, to repent of my smugness, and pray for this little girl.  

I know you won't all agree with me, and I'll probably stir up a complete hornets' nest, but since it took me to have to be put onto lifetime medication to at least start learning this lesson, it's not my heart that any of you should have to do this the hard way.  Let it go.  Paul says "Beloved, never avenge yourselves, but leave it to the wrath of God, for it is written,“Vengeance is mine, I will repay, says the Lord.” (Romans 12:19). That's a justice from which no government, family or lawyer can save you. But it belongs to God alone. Forgive. Let it be, and move on.

Trust me, all those who know you and your own body will thank you.