life – Beyond The Blonde

2017 MUST Be Better

2016 was a really hard year, I think we can all agree on that. I know from me personally it was probably the hardest year I have had to deal with. But this is a new year so I don’t want to focus on the bad –I want to focus on the good that is to come.

If 2016 taught one thing, it’s that your perception of any situation is everything. The way you perceive a situation will dictate the way that you handle it. So I knew it was important to go into 2017 with the positivity that I would carry with me for the rest of the year. Start as you mean to go on – isn’t that what they say?

On Monday January 2 I did something I don’t normally do. I organised myself for the next morning; clothes selected, make up at the ready, handbag packed – I even picked out matching socks! For 2017, I wanted to make more of an effort with my appearance. I spent most of 2016 with my hair in a messy bun, makeup-less, and wearing clothes that didn’t even match at times. In 2016 sometimes I just didn’t care. But this is a New Year so I’m going to care more. I’m happy to say that this is one resolution I have kept up so far. And considering we’re only a week in, that’s longer than most of my resolutions have lasted previously.

The next day saw one of the more dramatic changes – a good 12 inches was cut off my hair by my stylist at Colours. New Year, new me. I cant really describe what a big change this was, so I’ll leave you with the before and after photos instead.

The final change to bring into the New Year with me was to make my lifestyle healthier. I one to see a change in my body. People think that I exude confidence. But those of you who know me will know that I suffer with depression and self-confidence problems. At times in 2016, this depression crippled me and at one point I allowed it to takeover my life. It affected my confidence; it affected my ability to work; it affected my relationships. The talk therapy and the meds definitely help, but I felt I needed an overall lifestyle change.

So I have started a new health and fitness regime. I signed up for a year with Dan Sweeney Health and Fitness. As well as tailoring a workout plan to help me tone up, I have also gotten a lot of guidance around nutrition and my food choices. From what I’ve read from others who struggle with their mental health, diet can have an effect on recovery too. Just like it does with the physical health. So today is the day that I do my first big food shop for the new diet. I can’t wait to see the results – physical and mental.

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Iris Dances Around the Room

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Nystagmus – a mouthful of a word. A condition I am still trying to understand. But a condition which has effected me along with albinism since birth. Medical and health professionals describe Nystagmus as “an involuntary, often rapid, movement of the eyes”. This description will ring true for so many sufferers of nystagmus around the globe.

There are a number of nicknames given to it; ‘dancing eyes’, ‘wobbly eyes’, ‘shivering eyes’, the list goes on and on. For me, I personally used to call them “my shivery eyes”. And I was really lucky because all throughout my schooling, my friends were used to it. Once or twice we even used it to scare a stranger – my shakey eyes were my party piece if you like! We used to have great fun with it.

It was in later life that I began to have a few issues with it. Teachers would often remark that I ‘had a dreamy look’ while they taught me. This seems to be a common complaint of educators of children and young adults with nystagmus – the lack of eye control and increased movement leads teachers to think you aren’t paying attention. This is further compounded by additional sight issues if they ask you to go through what they have just written on the board – nine times out of ten you obviously cannot read it.

On a personal level, there are definitely things I find will exacerbate my nystagmus. In general, most people tell me it isn’t very noticeable unless I am straining to focus on something. But if I have been stressed out – exam time for example – the shaking gets far worse and becomes very noticeable to myself and others. Similarly, if I have had a run of 2 or more nights where I haven’t had enough sleep, its a similar situation – more pronounced shaking. The video below was recorded during a week where I was heavily reliant on my laptop – spending almost 5 to 8 hours finishing assignments. All eyeball and eyelid movements you will see in this video are entirely involuntary.

This was definitely one of those times where it was at its worst. But as I said, most of the time, those instances are few and far between.

So, have I described nystagmus correctly? And how do my readers find it affects them or their child/children? I’m sure its not the same for us all. For further information, check out the Nystagmus Network!

10 Things to Remember During Leaving Cert Season

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1. For the love of God, STAY CALM!

Everyone will tell you this; your parents, the local priest, all your teachers, and especially your friends. In fact, you may have friends that will brag about how calm they are. Remember, this is a front they’re putting on. Its near impossible to stay perfectly calm before you sit the Leaving – it is kind of a big deal. But don’t let it take over your life. At the end of the day, it’s a long exam over a few weeks in June. Think of it that way, and don’t put the ‘college pressure’ on while your sitting it.

2. Do not, under any circumstances, organise a ‘study group’ with friends.

Harsh but true. Study groups during school hours are okay, and some schools encourage students to study in groups during free periods. But a group with anymore than three people will end in a gossip session about who wore what, or how last weekends rugby game went. It’s even less productive when its a group of close friends. If you do set up a study group, pick two different topics to cover over 90 minutes and take short breaks.

3. Limit your procrastination.

Procrastinating over study will be a problem in your academic life forevermore. And if you can find a way to avoid it, please let the rest of the world know! It’s pointless advising you not to procrastinate, so why not procrastinate in a productive manner? If you want to go shopping for something, make a list of household or personal items you need, and time yourself to see how fast you can get around the shop or department store. Maybe a good use of procrastination time would be to clean out your room or wash the family pet? Again, limit your time. Even organising subject notes is a good use of procrastination!

4. Eat well.

Study fuel is key during Leaving Cert season. Fresh fruits, cereal, flavoured milk and smoothies are all study favourites, and for the most part they can be healthy too. The key to study fuel is twofold; it must be tasty and it should be healthy and energising. Avoid heavy meals and foods that encourage bloating like bread or a greasy bag of chips until after an exam. You don’t want to be sitting in the hall trying to write about Shakespeare and growing a food baby at the same time!

5. Schedule some nap time.

There’s only so much study fuel you can consume during the weeks long study regime before you’ll start to burn out, so don’t forget to set aside some nap time during study time too. The most productive naps are the ones that last between 10 and 20 minutes, so you can stay fresh and alert without getting too sleepy.

6. Make up rhymes to remember tricky formulas or theorems.

This is a great way to remember phrases or formulas for your Science, Maths or English papers. The best thing to do is try and make a rhyme out of a short phrase, or better yet even sing information along to your favourite songs. For example, if you want to remember the stages of mitosis, the phrase ‘I Party Monday And Tuesday’ is handy – Interphase, Prophase, Metaphase, Anaphase, Telophase. You’ll be rhyming and learning in no time!

7. Buy two of everything.

Stocking up on study supplies is crucial for surviving the Leaving Cert. Past Leaving Certee’s will tell you numerous stories about how they ran out of ink or how their calculator battery died half-way through an exam. So make sure to have a well stocked pencil case, the Noah’s Arc of pencil cases if you will. Two biro’s of each colour, two pencils, two erasers, two rulers, two compasses, and two calculators.

8. Make plenty of flash cards.

Well-written flashcards are the saviour of any crammer in the run up to an exam. Most people will use them to remember key points in all subjects, but a hidden trick is to devote some cards to themes you know will come up, and themes you can’t always remember correctly. They will come in handy for younger siblings studying after you too, which earn you major brownie points with the parents.

9. Pack your bag the night before.

This advice from the mouth of Irish Mammy’s all across the country, but to give them their due, its true. There’s nothing worse than the mad rush the morning of a maths exam when you’re trying to find your pencil case or a calculator. They were both on the table the night before and have now vanished – are there Borrower’s living in the house?!

10. Be kind to yourself

Goes without saying really, doesn’t it? You’re doing your best, be proud of it!

And remember…..

All this advice applies to studying when you’re in third level too!!

The Rose Tour and The 5.30 News

That title is a little intriguing isn’t it? Its been a busy few weeks to say the least. But often, when I put my mind to something, I’ll end up doing it alongside another project too, another project that is a world away from the one I just started. So here’s the lowdown. Some of you may know that I’m heavily involved with an Irish mental health charity, Suicide Aware. They work to promote positive mental health in communities and organisations around the country, and they also offer counselling for those suffering from mental health difficulties. I really believe in the work this charity does, and I’m a public advocate of mental health services and service users. Which is why I was honoured when they asked if I would speak about my mental health story at a national level recently. And instead of me waffling about it, watch it here instead.

Only two days after this broadcast, I found myself getting ready for a meeting of a different kind. An information evening about the Cork Rose selection. A few months ago, this same fantastic charity had asked me to represent them in the Cork Rose Selection process which is taking place over the next few weeks. It is an amazing opportunity for girls from all walks of life to come together for a meeting of minds, dresses, shoes and other things. Whoever is selected to represent Cork as a Rose will also have the chance to represent this fine county in the Rose of Tralee Festival in August too. So fingers crossed! I have been to two Rose Centre events already, and I can honestly say I feel my confidence growing with the passing of each event. There is such a welcoming atmosphere in the air. And the thing I am most of afraid of – being the different one – doesn’t cost anyone else a thought! What better confidence booster than that? That ‘feeling different doubt’, as I call it, follows me around everywhere I go, and has done since I was a teenager. If I didn’t know any better, I’d nearly say that it’s a symptom of the albinism! But I can truly say I’m feeling myself shake off that doubt every time I walk in to a room with these girls. And long may it continue – well for the next few weeks it will anyway!

The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here. We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his. While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from. During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”. And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to. So here goes…

The Do’s:

Ask me about albinism, and my sight. Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is. And I’m happy to share this information with people any time they ask. I’ll always be happy to do that. The only way to raise awareness of any impairments and conditions are to be open and talk about them. And in my experience, people always love to learn.

“Who does your hair? I want to go that colour”. I absolutely love this question, and the follow-up of “how do you mean its your natural colour”? I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots. You have to take the good with the bad, right?

Offer some help. This isn’t a patronising thing to do, from my point of view anyway. If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help. It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand. Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost. If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

Stare. How many times do I have to say this? I feel like a broken record. I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare. Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day. It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now. Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand! But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point. Like the guy who is staring at me in the library right now as I write this blog post. Irony eh?

“How many fingers am I holding up?” Irritation level 100. In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me. I’m open about my condition, as I’ve said above. But this is a line I feel people shouldn’t cross. And I’ll normally respond in a way befitting that.

Patronise. This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious. And it isn’t something that annoys me as much as the previous two points. What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”. People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train. These are the people who mean well by expressing their happiness that “someone like you” can be independent. As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences? What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues? I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different. Looking forward to some replies!

That September Feeling

So, here we are. On the road back to education after a fun, hot, long summer… Well, at least my summer was!

That fear is starting to wash over me again, the fear I know a lot of others, both students and parents, will feel too. It’s a kind of strange apprehension isn’t it? That feeling of what might be facing you or your child this year, in terms of how their sight will affect their education and socializing this year.

“Have they cut his/her resource hours again?”
“What will the other kids think if I can’t recognize them?”
“I hope someone doesn’t ask me to read something off the board.”

I’ve dealt with That September Feeling every year since I was about 12. And it would be a lie to say you don’t feel it every year, but it does begin to bother you less and less every year. The worst that feeling ever was, was the year I went into Leaving Cert – absolute nightmare! Imagine what it was like to have the “points race” on top of the September Feeling?! It will send you a little crazy, it will send your kids a little crazy – it will drive your parents absolutely up the walls! … But isn’t that a parents job really? To over-think and over-worry about their kids? No matter their ability?

So what’s your story this September? Have you been suffering That September Feeling too?

My story is that I’m starting a masters in a few weeks time. You’d think after spending four years at an undergrad in a college where the Disability Support Service is second to none, I wouldn’t be apprehensive? You’d be so wrong to think that! Going in this September is just like starting again for me. There are new people, new lecturers, a new department and a new building. It’s like information overload for the girl who relies on her memory and not sight to get around.

I’m learning to combat my September Feeling though. For me, it’s all about organization really, organizing yourself and organizing the people around you that you depend on. I’ve planned my year in terms of how to study and when to study so I don’t tire out my eyes – if you suffer from a nystagmus like I do, study and time planning is unbelievably important! I’m also going in to meet with my lady in the DSS tomorrow too – again this comes around to organizing the help you’ll think you’ll need. Planning is such a good help to me when I’m trying to combat That September Feeling.

So, as I’ve asked before. How do you combat your September Feeling? Do you have That September Feeling this year? Let me know – I’d love some feedback on it!

Symbols Aren’t Always Symbolic

So, there was this really interesting article recently on the BBC News website, and it pretty much sums up the past two weeks of my life quite nicely.

The article I’m talking about is available here: http://www.bbc.co.uk/news/blogs-ouch-24149316

It details the movement currently under-way to have the famous disability icon changed from something more static to a symbol that would be representative of every kind of disability. I found that really interesting. Think about it; its pretty hard to find one symbol to encompass a whole wide range of impairments, from physical to sensory, the visible and the invisible. The symbol we all know now is one of a stationary person, with a scarily straight posture who looks as if they are fused with a wheelchair. This is the symbol associated with disability since the late 1960’s. And it has now become what most people will expect to see when they hear of someone with a disability. They don’t expect a person who is able bodied but deaf or partially sighted.

Sometimes, I think that because people have preconceptions about what a person with a disability should look or act like, they’re not aware that this person could be in their midst. And unfortunately I’ve suffered because of that in the last two weeks. One such incident was when I got out of a car that was (rightfully and lawfully) parked in a disabled bay, and a member of the public decided it was ok to verbally abuse me “because that space is for a lad in a wheelchair – there’s nothing wrong with you”. Just because you can’t see my problems obviously doesn’t mean I don’t have them. And its so hurtful when someone does treat you that way, in broad daylight and in full view of others, and you feel like you can’t defend yourself. Another such incident was when someone gave me a telling off for my “outright rudeness” because I’d walked passed them without waving or smiling. That person didn’t realise that, you know, I’d have smiled had I seen you! But I didn’t, because my eyes don’t work the same as yours unfortunately.

I’m not writing about either of those incidents to score points or to make it sound like my life is hard or anything – I just think it’s important people realise that these things do happen when you’ve got a “hidden” disability. And there are so many ways to combat it too. First off, don’t ever dwell on it. We’re all guilty of making snap decisions about someone based on what we see. Everyone does it, even I do it – it’s human nature! What I’ve found works for me is to just try and calmly explain to someone why I have a parking permit or why I sometimes look at them and don’t respond. It’s the best way to deal with it because 9 times out of 10 that person is so happy to know that you’re not being rude or obnoxious – you just have extra needs that they mightn’t realise.

It’ll be interesting in the coming months to see what kind of symbol is created to symbolise disability worldwide. What are your thoughts? Do you like the symbol already in circulation? I think the one that is being thought of would be great – a less stationary figure who is in motion and trying to move.

Because let’s face it – no matter what your impairment, how many of us are ever that motionless in everyday life?

Me & My Albinism

If you took a look at me here’s what you’d see; an average looking 21 year old student who looks a bit younger than what she is, and is a little too short for her age, who sometimes looks grumpy but has an infectious smile and laugh when you bring it out in her. You’d see a girl with golden blonde hair, blue eyes and pale skin that is, more often than not, covered up by makeup that’s a few shades darker. One thing that would not be obvious at a glance is my hidden disability.

So what is my disability? A mouthful of a thing called “occulocutanious albinism”. A condition that primarly affects my sight but also gives me pale skin and stops me from tanning. Its pretty severe; I can only read the top letter of the eye chart in a doctors office – and that’s on a good day! Strong sunlight, my workload and the length of my day all have an affect on how “good or bad” my eyes will be during the day. It sounds pretty awful, and when a doctor or nurse who doesn’t know me reads this on a chart, I get look of pity which is unbelievably uncomfortable! It’s genuinely not that bad though – I absolutely love my life. I love my family, my friends, the course I study in college, the politics I’m involved in and everything in between! Don’t get me wrong – it’s not all sunshine and lollipops because I do have some awful days. But don’t we all?

What I’m trying to achieve by keeping a blog is to reach out to others like me, and others who are just interested. I want to let people know what college and life in general is like for someone looking out at the world with imperfect eyes. Hopefully I’ll achieve this without rambling too much and you’ll all find it interesting too!