12 Months Blind: Happy and Independent

10 December 2018

By Sarah Hocking

Twelve months ago today, I had my nine day old baby boy asleep on my chest. We were on  a hospital trolley bed,  My mum on my left, my husband on my right. As the orderlies were wheeling us towards the theatre, I was crying and clutching to my baby, wondering if I was ever going to see him again. I remember the corridors and the stares of pity we got in the lift. I was about to endure  a seven and a half hour long brain surgery to remove a tumour from my optic nerve. My baby was taken away by my husband and we had a teary see you later. I was connected to copious amounts of lines and machines and wheeled into surgery.  A mask was put over my face and I counted back from 10 staring at the halo of surgery lights,  My lights went out and that was my last coloured memory.

Hi everybody,

Welcome back to Blind Intuition. Today is the 21st of July.  I would have to say it is a pretty significant day.  It brings back my last coloured memories I would rather not remember and could haunt me if I let them.  It is a day of mixed emotions that brings back grief for my loss, overwhelmed by the enormity of the ordeal our little family has been through in the last 12 months; and also a sense of relief that the chaos and stress in our home has subsided to just the common stresses of running a household- parenting, work and money.  At the end of the day all of us are healthy and we are thankful for that.

Reflecting back on this part of my life is difficult for me. Coming back from rock bottom physically and emotionally has sure been a tough battle. I find it difficult, because I see myself as a bit of an optimist and am so focused on what I have to do to reach my goals of independence, that I haven’t really stopped to breathe in the enormity of it all and acknowledge the fact that I am doing alright and that it is not a race. I gave myself 12 months to gain back my identity I thought I had once lost in the process of becoming a mother and blind at the same time and to reach a level of independence to manage daily life on my own without being dependent on others.

I refuse to accept my story as a sob-story.  My husband Cameron and I are proud people and don’t see our situation as one to feel sorry for.  I don’t want to be seen as inspirational for managing to do everyday tasks such as parenting, work, household chores or going for a run just because of my impairment.  That is all it is… No different to someone with a hip impairment or a knee impairment.  My damaged eyes are part of me, but they don’t make up who I am or define my identity.  I am not amazing for breast feeding, hanging out the washing or buying a few groceries.  Cameron didn’t marry me for those things.

I was pretty cool before I lost my vision and am still pretty cool, albeit a little awkward and weird! I still have my quirks, 'Sarahisms', my intelligence, passions, drive, integrity, sense of humor and dreams.

I think those are the things that make someone amazing or inspirational.  Doing tasks, learning and parenting are just things that come with life.  They are simply things that are just part of living.  If anything,  the whole reason why I am writing my story in a blog is to share it with others, to help them and show that the human body and mind is a powerful and unstoppable organism.  Humans have the capacity to do and achieve and overcome any obstacle or anything they put their mind to, and that is what I find inspirational, fascinating and amazing.  So please, don’t feel sorry for us…  feel happy or proud.  We all have inner strength and power, some of us just need to be shown.  Cameron, Archer and I are just living our lives to our full capacity within our means.  This hurdle hasn’t stopped us or made us want to give up on life, rather to embrace life for what it is.  We may have been dealt some shit cards, but there are two ways of playing them and I sure as hell wouldn’t want to play them one way.

So 12 months on…  Have I reached independence?

 

 

Without being arrogant, I set myself a goal to become functional in the house, confident to walk to my local shops and to have a healthy body and mind balance.  I smashed those goals much quicker than I set out to do.  I believe I am independent in most aspects of my life and am mastering others.  I have seen a major change in 12 months.  I look back on some of the videos I took right after brain surgery.  They make me cringe because I was physically and mentally broken, drugged up and sleep deprived.  But I am glad those videos exist.

There were moments after becoming legally blind where I was feeling smothered, tired and was grieving for my loss.  I felt like everyone was judging me and like I had to prove that I was capable of parenting and caring for my child and being independent in the home.  It felt like people were watching me, and waiting for me to fail.  That was just part of the process and my mental state at the time.  I was highly anxious and just sad.  I felt like I was the only one who believed I could achieve what I had envisioned.   I could see my picture of independence and couldn’t understand why no one else could from my family.  It wasn’t until Vision Australia came  in and showed my family and I that my goals of independence are in reach and very possible.  It was the misconceptions and stereotypes that initially made me feel like I needed to write this blog.  Much of my early recordings are angry because I was just pissed off with people who couldn’t understand me.  How was I going to prove myself?

As I was achieving little goals to reach my big one, those pissed off feelings started to go away.  I was doing things for myself and as I was coming out of my rock bottom period, I  began to accept my fate and start making headway into the unknown.

This blog is more than breaking down assumptions, preconceived ideas and stereotypes — that is just part of it. It is about having a voice, educating people, raising awareness and showing people who are blind or have low vision are just as capable as anyone who has normal vision. Just the same as anyone with a disability is capable.

I am independent enough to live a normal life

At this stage in my life after becoming legally blind I can proudly say that I need very little assistance, apart from reading the odd thing and filling out the odd form.  The big one is that I can’t drive and I miss that, but we are used to that now.  Conquering all my goals has given us a huge sense of relief and has gradually taken the pressure off our family.  Here are the links to my posts about reaching independence:

There are things I need to still master, such as:

  • Reading Braille so I can use it for things such as filing, reading to Archer and bus signs. I know the alphabet and punctuation now, it is just a matter of becoming fluent.
  • Gaining confidence to work out how to navigate a new area or place. Help is available and technology is amazing.  These situations are always going to crop up.
  • Editing my writing:  I still need to learn the commands to go back and edit my work. Having the voice over is great to hear the coherence of my work and spelling errors, however it is still a tedious task to go back and edit. I have my brother, husband and mum to help me until I master it. Archer is more important and this takes time, so it will come.

Over the last 12 months, people have asked the following questions. At times I haven’t known how to answer these because of the fact that the answers will come to me in time as I overcome things. I do have some answers now and think those people deserve them.

How much can you see?

I love getting asked this question because it makes me feel like the person asking cares and wants to know so they know how much to help me. There is nothing worse than someone just assuming you are black blind and grabs your arm and pulls you  along.  Those people need educating and I have had to become more assertive in saying ‘thank you, but I am OK.’  When someone asks how much I can see, I can describe exactly what I can see in front of me and they can then use that information to guide me or read me what or where I need to go.  Depending on light, I can see most obstacles in my path in a range or about 10m. If it is really sunny, I can see further and it depends on colour contrast. It is hard to describe because my level of vision changes at particular times of the day, is affected by a rainy and overcast day, and sunny days. I bump into walls and run into things of a night and in low light. I believe I can see more than what people think I can see.  It is just a matter of me communicating with others in that moment in time. I find this hard, because I would rather talk about other stuff than make myself centre of attention.  This is an answer that can never be answered precisely.

You don’t come across as a blind person, and looking at you, you don’t look blind?

This question cracks me up. What is a blind person supposed to look like? Again this is one where stereotypes need to be broken down. Yes, a high proportion of people who are blind or have low vision are elderly. However, just because I am blind, it doesn’t  mean I need to wear the stereotypical daggy clothes and get around with my cane. There are plenty of people who are blind or have low vision who are children, teenagers, play sport, are employed, parents, bloggers and much more. Again, I take pride in my appearance when I go out.  I have mastered doing my makeup and like to feel good in my clothes. I run, cook and blog. Why should I have to ‘look blind’.  I believe I hide it well, purely because  the functional vision I have in my right eye is enough to get around by stealth. I am concentrating so heavily not to bump into things and use skills I have been taught, such as moving my head left to right, up and down subtly to increase my range of vision. Unless I need to read something like a price tag or directions, I feel I don’t need to say too much in quiet situations. In more crowded situations, the cane does come out and I do communicate, purely because it is less hassle and more convenient. I can still look hot with my cane though! Yes, I can have a child in tow too!

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What has been the hardest thing you have had to overcome after losing  your vision?

There have been many challenges, but the biggest one is probably a challenge we would have had regardless on whether I have vision or not and that is the stress the combining factors of moving to a new area where we know  no-one, having a baby, Cameron starting a new business and me going blind all in the one year and the stress that all this has had on our marriage.  This is a whole blog post that Cameron and I are writing together and will be released when the time is right.  You will get his perspective on it all very soon. We both think it is important to share both sides of the story as it may help others see perspective  in their own lives or relationships. Both of us have been to hell and back in our first year of marriage, and we are still together, still strong and coming out the other end.

How do you keep your baby safe when crossing roads, especially when busy?

Luckily I use the orientation and mobility service at Vision Australia. See my post here on how I get out and about and catching the bus.

Crossing roads I am anxious about, particularly those that are busy and don’t have a crossing or traffic lights.  Having a guide dog will give me that extra sense of security.  No, you can’t rely on the dog to make a call, because you are the one that makes it in the end.  They are very highly trained so it will make me feel a bit less anxious.  As Archer is getting older and wanting independence, I have  had to get new equipment to make sure he will be safe.  For example, using a stroller in the airport, moving to carrying him on my back in a back pack, having a harness and a lead to give him independence when walking.  He is like our beagle, runs away, and doesn’t want to hold my hand.  I have purchased one of those bikes with a handle that the parents can control.  I can use it like a bit of a cane.  Archer can learn to ride a bike at the same time.  Archer’s safety comes first.  If I am not confident to cross a road, I won’t cross it, turn around and go back and come back later when it is quiet.  This is very rare and I pick my times to get out and about.

How do you make sure Archer has a clean bum and How do you know he is unwell or has a rash?

Well, with changing his bum, I go for gold!  The key is to be organised. I have my change table arranged so I know exactly where everything is.  If I can smell a poo, I get wipes, plastic bag  and a clean nappy out ready before I take the nappy off, then everything is ready at my side in order of use when I need it.  It is very systematic, but it works. Wiping all the poo off his bum is not an issue. I can see the contrast of the poo on his bum.  You go by feel under the wipe.  When the tackiness goes, you know it is clean.

When Archer is unwell, he is clingy and grizzly.  I can feel if he has a temperature. I can’t see fine scratches, rashes, or bruises, but my fully sighted husband can.  If the time comes when he gets bitten by an insect, I know I won’t be able to see the bite or sting.  My husband  is two minutes up the road at work, so we are fortunate there. That is a bridge we will have to cross when we come to it.  It is going to happen as it would to all children.

Will you have more children?

This I find a personal question and it is one that can only be answered in time.  Both Cameron and I would like one or two more children, but want to find out the cause of my tumours first. The good thing is the tumours tested negative for the pregnancy hormone causing and fuelling the growth, however because major damage happened while I was pregnant, I am highly anxious.  That is a decision only Cam and I can make and weigh up the medical facts. It is a decision no one else can make for us and we are interested in no one else’s opinions other than the educated neurologists. If we decided to have another baby, we would be very closely monitored.  If I was to lose my vision completely, it would be that much harder. I have met a network if parents who have less vision or no vision with kids and are independent. It is a gamble I am in two minds about taking. At the end of the day, we have one healthy child and I am living my dream of being a mum.

Will I return to teaching?

This is a question I get asked a lot.  My answer is that I am still working that out. I love teaching and don’t want to lose it, however I am fortunate enough  to be able to stay at home to bring up our child. The longer I have off, the more content I am becoming. I think my experience has opened up other doors and I am keen to explore them a bit such as finding out where my blog takes me, possible public speaking opportunities, maybe going around schools to give talks on subjects I am passionate about such  a resilience, body image, mental health, healthy eating and exercise. The possibilities are endless and I have the skills to hone in on them.  It’s just a matter of time when I am ready to tackle that stage in my life. Maybe I might write a book, who knows. I am happy being a mum and dreaming right now.

Don’t you have days where you just want to curl into a ball and cry?

In the early days when I was grieving, yes and I allowed myself to do that. There were days where I just crumpled and wailed.  However now I have accepted it, I haven’t had one of those days in about 8 months. I am enjoying watching Archer grow up and learning new things. I have many things in place to distract me, such as going out and seeing my girlfriends, calling friends and family, running, gym, cooking, blogging, listening to music, podcasts, audio books and much more. I don’t have time to get depressed. I also realise that if these things were not in place, I would easily sink into depression and I am really good at reading the signs.  If I feel myself going down hill, I make an appointment with my therapist. Being a mum can be lonely at times, your life changes and you are tired. I find that when I am down, it is not really to do with my loss of vision, but more because I am a bit lonely if I haven’t talked to or seen my husband in a while or have been cooped up  in the house for too long.  Getting out and seeing and talking to people helps with this.

I have down moments sometimes, they are usually out of frustration if I can’t see something or miss out on something like the funny unspoken bit in a movie.  But they are rare.  I have more happy times than sad and am content with where I am at right now.

So what next?

Our family has got some great things to look forward to:

We are going to Europe at the end  of September. We are flying into Rome and will see Italy for six days.  We are planning to go to Paris next, but we are thinking of maybe Spain or Switzerland instead after the recent attacks.  We are in two minds.  We will then have a week in Scotland for my brother Alex and sister in-law to be, Julie’s wedding and then flying home. Watch this space!

I am running a half marathon at the end of October. See my running post here on what it is like to run in the dark. I am really excited about this.

12 months on we are at the stage in our ordeal, where we have reached our own level of normal and are getting on with life. We are much more appreciative of the smaller things in life and don’t take things for granted.  We are thankful for what we do have and we are also dreaming big. We hope to instill all of this in our children and look forward to what is ahead.

Sarah x

This post originally appeared on Sarah's blog Blind Intuition here. Visit her blog and read more of her writing here.