Wobbly Wednesday 2015

My eyes never stop moving.

That’s not a clever way of saying I spot everything (quite the opposite actually) or that I’m constantly busy (ditto), it’s just a statement of fact. it sounds like a small thing, eyes which jerk or swing from side to side, the way mine and my R have done since we began to see, but as a member of the Nystagmus Network, named after the condition we both have, I see so many questions daily, so many confused parents and worried adults, people who have to work just as hard as their eyes do to get on with a normal day, that when Wobbly Wednesday (a day to spread awareness for Nystagmus) rolls around, I can’t help but jump on the bandwagon.

Spreading awareness is a funny thing. Especially in a blog form. While my closest friends probably know more about Nystagmus than the average person who has the condition themselves, I can ply them with lattes and croissants, and distract them with questions about themselves interjected into an otherwise self-centred conversation about my life and my child and my fears, y’know, to make them think the conversation is two sided.

I can’t do that anywhere near as effectively on a blog. I probably have only about 3 more minutes of your attention span before you realise the jokes are drying up and click through to something about Kanye West. So I’ll try for a top 3.

Top 3 things I wish you knew about Nystagmus

  1. My glasses don’t mean I can see as well as you, any more than a walking stick turns an arthritic into a cross country athlete. I wear glasses, and so does my son. They support us, help the development of the eyes, and in my case-improve my vision where short-sightedness is involved. But Nystagmus means our vision is poor, with or without our specs. In R’s case, it means he is registered partially sighted. No amount of “lens 1, or 2? better with? or without?” will make a difference to that.
  2. We’re so tired. The simplest way of explaining it is that our brains have to work a lot harder to produce a still image for us to understand what’s going on around us. It’s an extra step in processing information, in seeing what someone is showing us, in reading a book, in playing a game. New settings are particularly difficult. It can be frustrating (especially if you’re five), it’s always exhausting, and often when I’ve been to a new place for the day, my eyes physically hurt by about 4pm.
  3. I just can’t see that. Whatever it is that you’re pointing to on your computer screen, yes even if it’s font 18. The faces of the people on stage, yes even from the front row. That sign out of the car window, yes even if you slow down. The detail in that drawing, yes even if I hold it closer to my face. Your face in the sunlight, yes even when it isn’t hot ouside. Who you are when you drive past me in the street, yes even if you beep and wave.

Next week, my R is having an eye surgery to help with some of the symptoms of his Nystagmus, in particular his head tilt, (adorable though it may be.) We are nervous about the operation as any parents would be, but we are also indebted to the UK Nystagmus Network and the Barnet VI team for being not only a font of knowledge, but also a community of kind listeners and intelligent answers and support. There is no cure for Nystagmus, but people like the ones we’ve come across not only never stop tirelessly looking for answers, but also help us get on with our daily lives so effectively that we have to suffer through people insisting there’s nothing wrong with us in the first place. A great testament to their hard work.

Lastly, I don’t run marathons, I don’t do sponsored mountain climbs, but I do write things down.

If you enjoy my writing, if you’re one of the people who stops me in the street and says “Hey, you haven’t blogged in ages”, please consider texting WWNN15 followed by any amount at all to 70070 to donate to Nystagmus Network.

Wobbly Wednesday

Let’s Be Honest

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For a brief period during university, I had my only ‘student’ job, face to face fundraising on the streets of London, or as its more commonly (and delightfully) referred to as, charity mugging, or chugging.

It taught me a lot. About the business side of charity, about the psychology of working for a good cause, about the actual charities I was working to raise money for. But most it all, it taught me about lies.

Like many aspects of life, it is best summed up by quoting Chandler from Friends, this time as he explains to his wife: “It’s always better to lie, than to have the complicated discussion. … except with you!”

There is no doubt that lies are convenient. Need to get off the phone? Oh, my battery is dying. Need to get out of an awkward conversation? Hang on, I just remembered I have to meet someone. Forgot to reply? I never received your email.

In psychology, these kind of lies are referred to as ‘Butlers’. They stand between you and the person you are talking to, as a middle man, making the excuses for you,. Lies are essentially buffers so that you don’t have to hurt people’s feelings by telling the truth, which is more often than not simply, “I don’t want to talk to you.” And socially, there isn’t really anything wrong with that. If we went around telling everyone how boring their boyfriend drama was, or how little time we wanted to spend hearing about their kids new nursery…. We wouldn’t have many friends left to lie to.

But these white lies have become human nature. And what surprised me so much as a chugger, was how many times I was lied to daily, and for no social convention whatsoever. After all, I was never going to see these people again. I wasn’t a relative, a friend, or even an acquaintance. We share no mutual friends, I don’t know what area they live in or even their first names. We are as much strangers as you can be with another human (who you actually know exists) and we will probably spend no more than 3 or 4 seconds out of our lives in each other’s company. Additionally, I wasn’t asking them a personal question, or for their opinion on my choice of footwear or my haircut. No one needed to worry about offending me. Fundraisers are very clearly working, and while often need the sign ups quite desperately to hold onto their jobs, are rarely if ever personally offended by the 99% of people who keep on walking by. (To put this into perspective, if we achieved around 4 or 5 sign ups between 10am-6pm, the day was considered extremely successful.)

And yet without any understandable psychology behind it, 9/10 times people choose to lie. So let’s put aside all the BS for a minute and just be completely honest. I’m off duty, I’m out of the fundraising game, and to be really straight with you- I just don’t care. But whether you are reading this on a tablet or a phone, or on a computer or a laptop, at home or at work, here is a fact. The amount may vary from household to household, but we can all afford to donate per month to any given charity.

You just don’t want to.

We said it! It has been said. We’d rather have the beer with our mates, the coffee with a friend, the subscription to the magazine, the cleaner or the childcare or the wrap from the cafe across the street. In some rare cases, it may take more of a sacrifice, but we still choose to have the extra item on the grocery shop or the variation in our wardrobe choices.

And here’s the amazing thing, no one cares! No one minds. In fact, everyone agrees! We all make choices about our money and where we want it to go. These are all totally reasonable choices, necessities or extras alike. We all believe that we should treat ourselves, or our kids or friends, often before we look elsewhere. And every human on the planet weighs up whether something is a good enough cause to be worthy of our time and certainly of our money. After all, the greatest philanthropist in the world does not give arbitrarily to anyone who asks.

Everyone has their own personal soft spots, myself included. (I wouldn’t go giving me any kind of precious object to look after for example, without being aware I may well pawn it at some point to buy a homeless teenage boy a three course meal.) I am clearly not a cruel heartless person. But I will freely admit here in front of all my millions of avid readers, that I would rather go to Starbucks than save any kind of animal species on a monthly basis. If you stop me in the street and expect me to start welling up as you tell me about abandoned puppies, you have severely misjudged your audience. I am already planning on asking for extra hazelnut syrup.

And before I had worked in face to face fundraising, I probably would have done exactly what you do. Pick up an imaginary phone call, bark out that I’m late for a meeting, tell the fundraiser that I would stop and talk to them on my way back down the road. Or on the off chance that they got me in conversation for more than those few seconds, argue that I really couldn’t afford even £2 a week, which was such a shame as it sounded like an excellent cause. I would look it up on the internet when I got home, and discuss it with my other half. Did they have a brochure or a card?

Now, I save us both some time and say something revolutionary. “No thank you.” If I’ve started talking too early and don’t have to break my stride I may add, “I’d be wasting your time.”

It costs nothing, it doesn’t offend, and best of all-it’s the truth.

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