Penny’s Story

Legally I am blind. I have been all my life. I have never known any other way and I manage my situation well.  In fact I take it as a compliment that sometimes, people don’t realise at first that I can’t see like they do.

I have been married for almost 10 years after having met my husband for the first time while travelling in Amsterdam. We have 3 beautiful children together and one due in October of 2014. My passion is, and always has been, helping others.  I have a keen interest in counselling and coaching people, helping them to feel at ease with their lives, make the most of each moment and reach their fullest potential.  I’m in love with belly dancing, am a would be writer, create the odd (odd is the word!) knitted item from time to time and constantly wage the war on laundry in my home.  I volunteer at my children’s school when I can, have been a Crisis Supporter on the phones of Lifeline and am passionate about raising awareness and funds for Multiple Sclerosis, having climbed Central Park Tower in Perth’s CBD last year for the cause.  Alas, this year I will sit on the sidelines rather than haul my pregnant bulk up the stairs!

Life is full. Life is wonderful.  I can not deny that.  But my blindness creates many hurdles in my life that most will never experience.   It steals so much from my world too.  Sometimes my limitations have a direct and detrimental impact upon my family.  Sometimes I hate it.  Sometimes it frustrates me to tears.  But what choice is there ut to pick myself up by the boot-straps and keep on keeping on?

My left eye is useless.  I liken it to the putty you fill holes in walls with.  That is all it is useful for.  It fills a hole in my head.  During gestation it failed to develop fully.  It is small and immature, never having developed the capacity to see normally.  This condition is known as microphthalmia.

My right eye is my “good” eye.  I have a very small amount of “useable” vision in it, despite it being affected by congenital cateract and having a dislocated lens.  I am extremely short sighted, needing 10x or greater magnification to read anything in print. But more and more I find this to not be enough.  I have a small telescope to help me see things at a distance, but it’s use is quite limited.   I am becoming increasingly dependent upon technological advances to magnify things on computer screens, or convert text to an audio output that I can hear as opposed to read.  But again, use of such technology has its own limitation.  But I am ever so grateful for my “good” eye.

This year I was informed by my ophthalmologist that my condition has a greater than normal potential for me to develop Glaucoma in the future.  Lucky me hey?

Every day, in every way my life is impacted by my vision loss.

Obviously, I can not drive.  I walk everywhere. My children walk with me, sometimes willingly, sometimes with a great deal of protest. We catch public transport, buses, trains, taxis… Most days I do not mind so much.  Walking is wonderful exercise and I enjoy it. But often I am frustrated by excessive heat or very wet days.   Because I can not see oncoming traffic I have to hear my way across streets which can be quite risky in high noise environments or on windy days where the sound of leaves blowing on trees can obscure the sound of approaching vehicles.  I also feel frustration and envy when people whizz by me in their cars when I am encumbered with a lot to carry or whining children.  I can’t help it.  My inability to drive in today’s society is very inconvenient and my children regularly question why and wish things were different.

I also find myself frustrated by public transport delays, reschedules and reroutes that leave me not knowing where to be or what to look for to use the service effectively… Finding a simple little bus stop on a street you are unfamiliar with can be a major trial sometimes!  And sometimes I am upset and angered by attitudes of others who unthinkingly say things like, “I never use public transport, it’s unsafe and it’s dirty.”  Although I try to soothe myself with the knowledge that they are not trying to offend me, it can be hurtful when I do not have any CHOICE in the matter. Sometimes, unintentionally, I am made to feel second class because I have to travel with the masses, some of whom do not take pride in their own personal hygiene or are managing lives in unfortunate circumstances that are obvious to fellow passengers.

Reading the side of a medicine bottle, then dispensing the correct amount in a measuring cup so that I can help one of my children when they are sick is always a struggle.  No magnification or technology is really adequate to help me read the curved side of a bottle or the clear side of a measuring cup.  Treating a child’s splinters and scrapes can be equally difficult when you can’t see so well.  It is lucky I give good cuddles.

Finding what I need in stores and libraries, or choosing from a menu on the wall of a fast food restaurant, or at the table, can be problematic.  Lighting conditions vary significantly, text styles are often unclear, stock on shelves moves from one location to another seemingly overnight.  I often take much longer to find what I need, make the choices or need to seek assistance.  And don’t get me started on buffet style meals!  My first plate of choices is always sacrificial… A little of everything to see what is to my taste or not.  My second plate is my meal, consisting of only dishes I liked.

Going out at night leaves me practically blind.  Low lighting conditions or glare from street lights and traffic renders what sight I have as useless.  Loud pubs or clubs leave me socially isolated as I can not hear beyond the din to communicate with people while those around me rely on lip reading and charades.

I fake eye contact.  I do not actually understand the concept but I know that people look at one another when they talk.  But not all of the time.  There’s polite and rude eye contact.  I wing it…  This was particularly difficult before I met my husband when I was not privy to those glances across a room, body language that may signal interest in me or silent communication from a distance.  I know it happens, but I am excluded from that aspect of society.

Even though I have some vision, I can not tell you what you look like.  I need to be more then intimately close to see your eyes or the details in your features.  To me you are a shape, a voice, a style of movement that I can identify you with.  You are not really an image.

As a mother, I struggle with not being able to see my children’s expressions when they receive awards, surprises or news.  I can not read the emotion in their faces or their eyes.  I have to rely on instinct to know how they are feeling or to ask questions that they may not always appreciate. I will never enjoy seeing them play in their favourite sports, see their faces as they say their vows on their wedding day or see if their eyes are filled with tears.  I can not supervise in a playground like most parents.  I can’t see what my children are doing, where they are going.  Often I can’t even identify which child is mine if they are not making sounds!  And put a school yard of children in uniorm before me at the end of the day and I’m totally reliant on my kids finding ME as opposed to me finding them!  I have to place far more trust in my children in public situations than most people do.  Trust that they will come when called, to watch out for each other and keep me informed of what is happening, to not hurt or avoid others who are hurting.  I have to trust that they will alert me to ‘strangers’ or unusual situations of concern.  Or, I have to wrap them in cotton woll and not take them to places where they can run and be free.  That is not fair.

I can no longer read books like I was once able to.  For hours on end as a child I would immerse myself into books.  I loved reading for pleasure. I loved learning.  Now I struggle to read a page or two at a time.  I find watching television or movies tiring as I have to concentrate too hard.  As a result I am finding my awareness of what’s important to the social collective is much smaller.  Do not ask me who my favourite actors are or if I saw that movie or know what’s “hot.”  I don’t… It takes too much energy to find out when you can’t see.  Or that is how it is for me.

Addressing envelopes, reading mail, filling in forms, signing my name, looking up phone numbers, taking messages, playing card and board games, helping my children with homework, reading them stories…  Avoiding spiders in the garden, finding dropped items, identifying money, seeing sizes on clothes in stores…  Enjoying the flock of birds feeding on the grass at the park, watching my dog play or my chickens forage for bugs in the grass…  All of this and so much more is difficult or impossible for me.  I even regret getting a black dog as she has no contrast against my dark wood floors when she’s sleeping.  There is almost nothing about my life that is not affected by my difficulty to see.  I need extra instruction to learn the right dance moves when I belly dance.  I knit with my nose on the needles, I write with my nose on the paper.  I do not wear eye makeup as I can not see to apply it.  I do not paint my toenails for the same reason and I am not blessed with contortionist flexibility to make it possible!  I regularly unintentionally ignore friends in the street and I have even wound up in some embarrassing situations because I could not see…  I have hailed a cement mixer thinking it was a bus, caught a driving school car thinking it was a taxi, talked to total strangers in ways that were inappropriate as I thought they were people I knew… The list is endless…

And why is my life this way?  What caused my blindess?

My mother came into contact with someone carrying the rubella virus when she was 11 weeks pregnant with me.  Blood tests showed that she had some immunity to the virus even though she had not been vaccinated against it in the early 1970’s.  Vaccination against rubella was only just being introduced at this time.  A few weeks after my birth my mother was changing my nappy on the table or a caravan and noticed my eyes did not look “normal.”  She took me out doors to look more carefully and noticed a slight greyness in my pupils, even in natural light.  Later, this was diagnosed at congenital cataracts but the extent of my vision loss was not to be fully known for several years, until I began school.

I attended a regular school in a class of vision impaired students.  We had the best of both worlds in my opinion.  Connection with peers was invaluable, connection with the world was imperative.  I am very very lucky.

Even more lucky when you consider how rubella can affect an unborn child’s development.  Only my eyes were affected, but my heart and my hearing could have been damaged also… Some children do not survive.

Every day I live with the legacy of a preventable childhood illness.  Often I am confronted with the to vaccinate or not vaccinate “debate.”  For me, there is no question…  Vaccination is essential.  My children are vaccinated.  I do not want to run the risk of them living a life that is encumbered with difficulties such as mine, if I can possibly help it.  I do not want to run the risk of burying one of my babies prematurely because I failed to vaccinate against a preventable illness that can kill.  Whether the risk factors of vaccination are real or perceived I can not justify them against the KNOWN RISKS of not immunising.  It is my duty as a parent to protect my child and my duty as a citizen to protect everyone one else’s child by default.

If you are not sure which side of the debate you stand, or you choose not to vaccinate your babies, please reconsider.  I am one of the few lucky disabled people, who’s life is good despite the every day difficulties.  Not all are so lucky.