Nystagmus – Beyond The Blonde

Albinism in Your Skin

This one is especially for my friends in the Albinism community. I think we can all agree that – while the blonde hair is a blessing – the translucent skin is a curse! Especially when you have redness on top of that.

Covering up the redness with tan – do love this gúna though! It’s from Vanilla Boutique in Fermoy

I’m not sure about the rest of you, but I purposely keep my arms (in particular) covered. The problem with translucent skin is that redness shows constantly – I know for me, it means my arms end up looking like someone has slapped me, and the rest of my skin is deathly white! I’m so conscious of it, and the only way I’ve covered it before is with a spray tan. But constant spray tanning isn’t pracitical – or financially healthy!

So a few weeks ago, a friend gave me some bottles of a new skincare range that she’s been using recently – a range called Ocean Bloom. Usually, I won’t try a new range even when I do get a recommendation – my skin is so sensitive and the smallest thing can set me off with a rash or reaction. But I must admit, when I checked out the ingredients on their website, I was impressed. Their moisturiser has an SPF – super important for someone with albinism because of our lack of pigment. No parabens, no nasty sulphates or silicones – and all organic ingredients. They don’t test on animals either.

It’s great that the Ocean Bloom range isn’t tested on animals – I also just think this pic is super cute!

So I thought “I’ll give this a go!”.

I started out with the moisturiser and eye serum. Of course, I patch tested both first, and no reaction so I was ready to go. Woohoo!

Within a week, there was a clear difference in the redness of my face, something I’ve always had trouble with and something I put down to my albinism. The red pigment and hue in my face started to fade – not entirely – but noticeably enough. I’ve been doing a bit of Google’ing, and seaweed (the main ingredient) reduces skin redness, inflammation, and is a natural way to hydrate skin. So maybe this explains it? All I know is the redness is going slowly, and I’m super happy about that!

Some pics I took of the moisturiser, just for an idea of the consistency

Similarly with the eye serum, the dark circles around my eyes are gone way down too! Again, these circles are something I used to put down the strain on my eyes by everyday tasks – I’m sure you all know how difficult it can be to work around nystagmus. I felt it was my nystagmus made these circles worse – there’s a lot of pressure on my eyes day to day. So obviously I’m super happy with this too. It’s nice and soft around my eyes too – again, I’m so careful with what goes near them because it’s important to keep them as healthy as possible.

When these results were so good after just a week, I started using some of their other products – the main ingredient in the range is seaweed from West Cork. So it MUST be good for the rest of my skin, right?

Remember what I said about the redness in my face being reduced with the moisturiser? Well, the body butter had the EXACT same effect! I can only presume its because of the way seaweed reduces redness? Or maybe its because something soothing is on my skin. Whatever the reason, it basically means I don’t have to keep my arms constantly hidden if I have no tan on! R-E-S-U-L-T!!

I’m always the first one to share any good products I find – especially when it comes to something that helps with the lesser effects of my albinism. Trust me when I say this really helped the redness on my face, that I think is mostly down to my albinism. The same with the redness on my arms and parts of my legs. It hasn’t disappeared, but there’s a huuuuuge reduction in it. Hopefully as I keep using it, it’ll continue to reduce it. I’ve noticed that my skin is a lot healthier in general since I started using the moisturiser and body butter.

My favourite delivery of ALL time!!!! How cute is the packaging?

I’ve included links in this post if any of you want to have a look at Ocean Bloom’s online store, you can. If you guys end up trying these products too, please message me and let me know! I think it’ll be really beneficial for people like me with albinism who suffer from the same type of redness.

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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!

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!

Don’t Let Pride Get in Your Way

Flash back to the end of August. I’d had a pretty jam-packed summer; trips to Dunmore East, Liverpool and Inis Mór. And now I was settling down to start my masters in Government, back in UCC. So I’m out shopping for the typical college stuff (pens, papers, highlighters) when I get a phone call. Its from the Irish Guide Dogs Centre and they’ve found a place for me on one of their Independent Living Courses. The course is taking place for the entire following week so I accept my place, pack a bag, and take all kinds of gear with me as its a residential course. Sounds like I did it without even a second thought, doesn’t it? Except there was a second thought, plenty of second thoughts.

Sometimes, I find it really intimidating to partake in some of the workshops/sessions/fun-days that are run for people like me with vision loss or blindness. I find some courses to be a total box ticking exercise – its a case of “ah sure we’ll run that course now and we’ll be done then for the year”. Depending on the organisation of some courses, you can go in waiting to feel empowered and then come out totally deflated. This was definitely a fear I had and kept thinking about all the way out to the Guide Dogs Centre in Ballincollig. I had all these reasons in my head why I didn’t need to go/why I shouldn’t go:

– I manage grand at home, I can do some things

– I don’t really need help from anyone else, I can sort it myself, why does everyone think I need heaps of help?

– If this is a box ticker in any way, I’m high tailing it out the door.

Well, what a surprise I got!

Arriving on a Monday, I was given most of the day to settle in and meet the others in the group, as well as the course instructors and the other staff. Together, we all got a tour of the building, and got to grips with the facilities that were there for us to use during our stay. Then one of our instructors explained the structure of the week to us, which basically consisted of us learning during the day, and making our own fun at night. The course was open for us to do what we wanted with it. So as a group, we all came to a consensus about what we wanted to cook for lunch and dinner that week, made a list of what ingredients we needed, and decided on some extra household related things we wanted to learn too. So we decided on smoothies, lasagne, casserole, curry, wraps, pittas, banoffee pie, and brownies.

Now, the whole point isn’t to learn how to make these specific foods, its really to equip us with skills we can use to make all kinds of meals for ourselves, and by extension of that, to make ourselves more independent in a safe way. We learned how to use our other senses to tell how well our food was cooked (sound, smell, touch), what foods or sauces we were using (smell, touch), how to layer foods (touch, sound), how to use particular appliances safely (touch, sound), and how to make sure our area was clean after we’d cooked without necessarily using sight.

While we did have our instructors with us the whole time we were in the kitchen, it was still a case of “you must cook this – no one else will cook it for you”. And that is exactly the kind of Independent Living Course someone like me needs. Its about empowering ME to do something and finish a job MY WAY, no matter how different it is as long as its safe. It is so daunting at my age to realise that in the next year to three years, I’ll be living on my own, cooking on my own, cleaning on my own. And its daunting because I’ll be the one in charge of me, I won’t always have my parents or my brother to fall back on. And I know they must wonder about it, as do I, thinking “Will she manage? Will she cope?”. So for me. getting these kind of skills was massively important. It doesn’t just benefit me, it benefits those around me too.

Pride is a good thing. But pride could have put a stop to me going out to the centre and learning all these fantastic, new, and badly needed skills. Pride could have stopped me meeting new friends and us all sharing our experiences with one another. I’m so glad I took that particular leap of faith and didn’t let my hesitation or previous experiences stop me – I would have lost out on so much. I can’t speak highly enough of the training and empowerment I got from this course, words could never describe it well enough It taught me a lot about not letting pride stand in my way too.

If you would like to support the work of the Irish Guide Dogs For The Blind, or want to find out more about their services, please click here where you can donate through their webpage or search through the different types of courses run.