BN Skin Deep Series is a 3 piece series which aims to provide an intimate account into the lives of people with various skin conditions (Vitiligo, Psoriasis and Albinism). The aim of this series is to create awareness of these conditions and help people both understand and appreciate the realities of living with these skin conditions. This is the final part of the series. We hope you enjoyed it, please do leave feedback and let us know if you would like us to cover such topics in the future
My Name is Yvonne Edozien and I am an Albino. Albinism is a congenital disorder (defects in or damage in a developing fetus) characterized by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the production of melanin. The primary cause of albinism is the inheritance of recessive gene alleles (particular type of DNA sequence). Thus I hope this corrects the popular belief that if a light person marries another light person they are likely to have albino children. This is quite incorrect.
Sadly, being an albino sometimes comes with pretty severe sight issues and I wasn’t one of those lucky enough to escape that. I should however stress that not all albinos have this condition. For instance my older sister who is also an albino can see as clearly as the next person. In addition to being short sighted and having astigmatism, I suffer from something called Nystagmus, which in a nutshell is the involuntary wobbling/movement of the eyes which reduces the ability of the eye to focus thus decreasing visibility. I started struggling with my sight when I was about 17. I mean, its not like I could see any better before then but at this age, I think my sight stabilised. So I’d go for my annual eye test, complain about the fact that my glasses aren’t strong enough and I’d get told my prescription hadn’t changed from the previous year. I’d sit in the optician’s chair frustrated while they tried this lens and that and the longer this went on, the more my vision would blur (from the effort of figuring out what letters were now clearer, if any…glasses wearers know the drill) and the more confused and frustrated I’d get. I went through a difficult phase where I was constantly being advised to see one eye doctor or the other, family and well wishers wouldn’t accept ‘nothing could be done’. After getting my hopes raised…and dashed…more times than I care to remember, not to mention the embarrassment of crying at the end of an eye examination, I put an end to that.
Being the odd one out is probably the last thing any child wants. As a young girl, the last thing you want is for conversations to stop when you walk into a room, to be stared at and pointed at constantly, to have people (old and young) stand outside your car staring in at you every time you so much as stop for 10 seconds in traffic. The last thing you want is to have younger kids burst into tears when they look at you, to not be able to find the person who has come to pick you up from school because you can’t see far enough to spot them, to not be able to do the things your friends can, because you are ‘special’. Growing up as an albino was all that and more.
Truthfully, things haven’t changed much. I still get pointed at, stared at, and called all sorts. I still get asked why my parents are black and I’m white, and I definitely still get asked why I won’t get stronger glasses. The one difference is I’m now very ready, very willing, and very able to speak up.
Life as an Albino: The challenges
I think most of my challenges with living as an albino came during my time in secondary school. Fore instance, I struggled through every test in secondary school because my teachers couldn’t (or wouldn’t?) understand why someone who couldn’t see the board wouldn’t simply get stronger glasses. I guess I can’t blame them, I still get asked that all the time. Back then though, speaking up wasn’t an option…secondary school in Nigeria, need I say more? So, I suffered and smiled, and my dear friends did their best…copying test questions onto sheets of paper and sneaking them to me.
I have come to accept that I’ll quite likely always see things in shapes and colours and while I’ve crossed the education hurdle, somehow going as far as a masters degree without being able to read off a black/white board, I am now dealing with the fact that I can have a car parked outside and have the car keys in my hand, and still not be able to go ANYWHERE if I can’t find someone to drive me. Having sight that’s so poor I’m unable to drive is probably the single biggest disadvantage of being an albino, for me. Someone has to take me to work, someone has to bring me home after work, I have to get someone to accompany me if I have to go places I’m unfamiliar with, and lets not even discuss the utter chaos my life becomes if I have to venture near an airport alone. As an otherwise independent person, it’s hard to have to structure my life around other people. Fortunately, I am surrounded by amazing people; my family, friends and colleagues make it so much easier to deal with this limitation…as grateful as I am to them, however, they do have their own lives, which they can’t always put on hold for me. As my friends often tease, this does mean I can only date “nice people”
Aside from my sight issues, my complexion also meant facing a new day in school was a constant battle…one I only managed to get through after my amazing mother gave me her ‘you are special’ speech. On my 21st birthday, my mother reminded me that I’d at some point asked them to build a school for me at home. Naturally I don’t remember saying this but I’m not at all surprised that I did. I definitely remember wanting to hide at home, where I wasn’t such a strange person to look at. A few memories stand out, from that period in my life. When I was in secondary school, my younger sister and brother were in primary school, and I remember getting to the point where I stopped attending plays, interhouse sports, etc because I didn’t want them to have to deal with all the looks, questions and comments that came with having me as an older sister.
When I was much younger, I felt the need to be like and do what everyone else was doing….to a reasonable extent of course. So, if my friends were going swimming at 2pm (you know what the sun is like in Lagos at 2pm), I simply wasn’t able to sit quietly in a shaded area and watch. I’d tell myself I’ll swim “only for a few minutes” and if I stayed under water mostly, the sun wouldn’t do much damage. After going home sunburnt and in pain numerous times, wisdom prevailed. Imagine having what feels like a hot water burn all over your arms, your legs, your face, your back…your skin is raw and the slightest touch causes a lot of pain. Needless to say, I’m now very comfortable watching from the sidelines. I love sitting on the beach, under an umbrella (wearing shades and a hat, of course), with a good book!
Today, the slightest exposure to the sun gives me a headache, even when I’m sitting in a car. It’s like someone is shinning a really bright light straight into my eyes. To deal with this, I wear sunshades constantly during the day. I’ve since come to understand that this excessive sensitivity to light is called ‘Photophobia’ and happens because my eyes let in too much light.
In addition to the related medical conditions, being an albino does have some effect on my social life, or at least on the perception people have of me. Back in secondary school, I was constantly being accused of ‘looking down at people’, something the ‘seniors’ didn’t find at all amusing. Years later, and thanks to the internet, I’ve discovered this funny head posture is my ‘null point’, and I automatically adopt this posture because in that position, my eyes don’t wobble as much and my vision is slightly clearer. I’ve come to accept that people who don’t know me too well will always think I’m a snob or unfriendly, because apparently they were waving to me from across a room and I didn’t wave back, or because they said hi to me and I didn’t recognise them (made far worse by the fact that I’m obviously easy to remember due to my complexion). Sadly, I can’t go around with an ‘I’m partially sighted’ sign on my forehead so that’s one battle I can’t do much about.
Misconceptions
It is sad that even in the 21st century and even with much technological advancement people still have less than knowledgable understanding about albinism. I really have heard almost everything, from the insane to the downright ridiculous. A few years ago, I had an argument with a friend because he was adamant in his belief that I was unable to eat salt and pepper. Given how much I love spicy food, this argument was very amusing. He concluded by saying that if indeed it was true that I eat regular meals, I must be only partially albino.
I recently found out that as far back as secondary school, it was rumoured that my family took annual holidays because my sister and I needed to take some special injection to keep our skin smooth, my mum apparently also had some special cream she used. I have people come up to me from time to time, within and outside Nigeria, asking how I keep my skin this way because they have a sister/friend/daughter who is an albino and has bad skin, and they look so hopeful, I’d wish that rumoured special injection/special cream was indeed real.
Sadly, some of the misconceptions have grave/fatal consequences. It is heartbreaking to find out that this far into the 21st century, people are still being killed because it is believed their body parts hold the answer to wealth. While I often spend a bit of time reading about these incidents as they unfold, it’s quite difficult to accept that it’s real, and talk about it, so I won’t.
The Positive Side
If nothing else, being an albino makes life interesting. With each new day, there’s a possibility I’d hear some very flattering comments, meet the most ignorant person or find out some myth about albinos I was previously unaware of. Sometimes I feel like I’m a bit of an experiment…to myself. Unlike with skin conditions one develops, I never think of the future, how things will unfold in the long run. I have grown to love being different and I’m pretty sure I wouldn’t change my skin colour even if I could.
Unlike with vitiligo and psoriasis which were previously discussed in this series, I haven’t had to get used to a change in my life. I was born this way and I’ve had almost three decades to get used to it. You look in the mirror everyday and you see the same thing, sooner or later you stop seeing it. I stopped seeing my skin colour a long time ago and I know the same is true for my family and close friends. My siblings are constantly surprised when I relay derogatory comments because they can’t imagine that people “still think that way”. They are also very protective and more than willing to educate anyone who somehow thinks they are entitled to make these comments within earshot. Interestingly, my immediate elder sister, who is also “light skinned” is the most protective and is someone I definitely want to have in my corner when necessary.
This is my life though and I’m completely comfortable with it. I truly like being different and if I were honest, while there are some people who will always see an ‘albino’ as opposed to seeing Yvonne, those people are outnumbered. I’m constantly getting complimented on my skin, my hair, even my eyes (which are constantly dancing around). My fiancé is very proud to have me on his arm and that’s been the case in every relationship I’ve been in. I live a very normal life; I have a pretty good job, my social life is as vibrant as I want it to be and I’m completely surrounded by amazing family and friends. My skin colour only affects my life today because of the medical/physical implications and not much else.
Advice to Other Albino’s
From a physical/medical perspective, I’d advise others to be careful, and look after themselves. Each one of us isn’t alone, and our experiences are not unique to us. Information is a lot more accessible with the internet and I’ve found that I’ve been able to deal with related issues, even at work, by sharing other people’s experiences with those who do not understand. The more people understand, the more capable they are of making life more comfortable for me, or at least the less likely they are to make life more difficult.
Health issues like skin cancer are very real, and very unpleasant, and we should each take steps to ensure we guard against them. Recently, there’s been a lot in the papers about albinism and skin cancer. People are being educated about the very real danger of skin cancer as a result of constant exposure to the sun. Unfortunately, for a lot of people, this advice is coming too late. I stopped spending time in the sun many years ago but even I cannot boast of truly understanding the potential consequences. I stayed out of the sun simply because it hurt too much to do otherwise, and I was fortunate enough to have that option.
Lastly, it is very important to surround yourself with supportive people, people who are comfortable with who you are and wouldn’t have you any other way. I’m able to admit a lot of my confidence comes from the way I’m treated by my family and friends. It is hard to feel like there’s something wrong with me when I’m constantly being complimented. I might have no control over my skin colour but everything that comes after that is up to me; my clothes, my hair, my make-up. When I step out of my house I feel good about myself and it shows. Yes, maybe I feel I have to make an extra effort, but even that’s my little secret. I was born this way for a reason and I know God wouldn’t give me more than I can handle. I read a quote recently that perfectly sums up the way I feel: “Do not wish to be anything but who you are, and try to be that perfectly” (St. Francis de Sales).
Photo Credits: www.willandbeyond.com; Seyi Charles George Photography
