Finding out I had Irlen Syndrome changed my life.
As soon as I put on my blue tinted glasses I could see everything in detail, I could see textures and corners and depth. The light didn’t affect my eyes and reading was easier.
I turned to my mum and said “Is this what life looks like?”
My tint is blue. From my understanding everyone with Irlen has the colour that they need to correct their perception, it’s not an eye problem it’s a brain miscommunication. The colour you need is either missing or lacking in the connection from brain to sight. But when I put on my glasses I don’t see blue, I see what you see and now when I take them off everything is yellow and bright and I wonder how I survived so long without them.
Driving now I smile from ear to ear because I am not afraid of the other cars, I can see distances. I don’t squint anymore, it’s so weird to not squint.
I don’t bang into things anymore because I can see how close or far they are. I can see corners!
If I had these glasses all my life things wouldn’t have been so hard; reading, clumsiness, light sensitivity, headaches etc. My parents had me tested for everything under the glaring sun when I was young. I probably wouldn’t have worn them back then but I am so grateful to have them now and can see how they could have helped me with school and life and maybe things would have been better for me. Now they are better, I have them now and I finally see what everyone else sees.
My GP has never heard of Irlen Syndrome, my neurologist and ophthalmologist both looked puzzled when I asked about it, also not heard of it. So I am here to change that. To make sure people know about it and kids get tested for it because everyone should see the whole world not just slivers.
Go to http://www.sidc.net.au/
Get info, get tested, see.
2 things changed the direction of my career last year.
1st “13 Reasons Why” – the show made me want to work with bullies and try to help the suicidal.
2nd the semicolon movement. This symbol saved my life, this tiny little dot and a dash can save lives because our story isn’t over.
Watch S2 of “13 Reasons Why” and looking closely. I see ; in every episode. I see hope.
So I decided to do something with this new inspiration. I decided to paint 30 paintings with a semicolon and sell them at an exhibition then give half the proceeds to a suicide charity. Then I got a semicolon tattoo. Then I organised the event. Look for the paintings on my blog and stick around for the announcement of how much I raised. And after? You’ll hear all about it because my story isn’t over!
Semicolon Charity Exhibition:
June 2&3, 11am-3pm
The Gardners Inn, Blackheath NSW
Half the proceeds go to SAP (Suicide Awareness Project)
Buy a painting, help raise funds for a really important cause.
One Dark Hour.
Things are good in life. I have my Diploma, I have my pool, I have job prospects, I have good friends and a loving family.
I am on meds and should be stable and I am but the lately I have been teary at night and feeling a mixture of a heavy weight and a piece is missing.
I see beauty in things I never noticed before like a flower with so much detail and several colours or the way my cat sleeps with one eye open and follows me everywhere I go. I taste every bite of food and enjoy every mouthful (if it’s good) I make plans and am excited about what comes next… but then a wave of sadness and I can feel all the pain in the world for just a moment. As I cry I feel every inch of pain I’ve ever felt, every time I was let down by someone I cared about, every time I thought too highly of someone, every mean word the bullies said, everyone I have lost and every physical health issue. They flood my thoughts and my tears flood back and I am overtaken by it.
This mental illness is so evil. Even when things are good I can still feel so low. I allow myself an hour of being sad and then I have to put it away until tomorrow. If there is a big loss I give myself one day to mourn it then put it away.
I use grounding exercises to bring me back to right now and remind myself that things are good and that I have been through worse, and I am ok. I sleep and then wake up ok. During the day I am ok.
But every night the sadness creeps back in, the flood begins but I only let this beast have one hour. Then I close the flood gates and am a fully functioning stable human being.
I wish I could balance it with one hour of mania a day, oh man so many presents from eBay would come. But no!
I have it under control. I check in with my doctors and I am ok. This is just a thing I have to do now so that I can have 23hrs of ‘normalcy’ or peace. It’s a very fair trade.
I feel guilt and shame because I know people have it worse. I hate my dark hour but I need it to have light.
It never gets so dark that I want to leave. I want to live. Having the semi colon symbol has helped so much because MY story isn’t over yet. My story has many more chapters, many more happy days and only one hour a night off.
Anyone who knows me and my sister would tell you she was the studious one. I dropped out of high school while she got 99.5% on her HSC UAI, a scholarship to uni and completed a double degree and later her CPA. She always worked really hard and did really well. I was always jealous of her, thinking she was the smart one.
I was a high school dropout who barely scraped by. I hated studying, homework or any work. I liked the creative subjects and mostly lunch time. I never really admired how much work she put in to get the grades she did. I had difficulty concentrating for long periods of time. Well for any periods of time. School was hard. The social side of things also made things harder because I was more focused on trying to fit in rather than concentrate on class.
After I dropped out at 16 I did a chef’s course. I loved cooking and really enjoyed the practical side of the course but I didn’t do great in either the prac or the theory. I just wasn’t a student.
I did a director’s course and passed but not with flying colours and no with confidence about my future in film making.
I tried mini courses in French, drawing, writing etc and passed because everyone passed but nothing to write or draw home about.
I did a UPC at 21 – university preparation course in Psychology for a year twice a week to make up for not having an HSC. I got a credit even though I had a mental break down towards the end.
I did a hairdressing course but managed another break down and never finished it.
When I was 22 I did a childcare course at TAFE. I freaked out on my first day and had a full blown panic attack. Mum raced to save the day and negotiated with a great supervising teacher that I would do the course over a year part time instead of full time for 6 months and that I could have little breaks if I felt overwhelmed.
I got my first ever distinction. It felt good. I enjoyed the course and thought maybe I was ready for Uni. Ha.
At 23, Uni was a whirlwind of essays as long as your leg, tutorials with these teens that talk like they swallowed a textbook, lectures filled with hundreds of kids and anxiety and more reading than I have ever done in my life. It was so full on and I went back into old habits of thinking I was too dumb for this and panicking because deep down I knew I couldn’t do this. There was a part of my psych class that required me to do an experiment and the one I picked happened to be for inducing anxiety, wish they had told me that first because I would have told them there is no induction necessary. I freaked and spiralled and after 6 weeks of hell I quit.
After uni I focused solely on work and staying well.
After many years working with little kids I decided to study again.
Can’t say I’m not persistent.
I did a Youth Work course and knew early on that it wasn’t the path I wanted to follow but completed the course and stored the knowledge in my brain for future use. I went back to work in childcare.
I adored working with kids with disabilities and did a little online refresher childcare course. It was great, I watched little mini tutorials and answered some easy questions on what I had learnt and passed without a second glance. This made me feel that maybe I could study online, maybe I had the discipline we all doubted I had.
Stress caused my left ovary to twist and become septic and needed to be removed. When that happened my love of kids was also removed. I continued working with kids for a few years but never felt that bond. Kids became a sore spot and then became nothing. I knew I couldn’t stay in this profession.
I searched for a long time for my next move. As you have just read I have tried so many things. But what did I love? What would I be good at? What could I really see myself doing?
And then it hit – counselling. I love helping people, I’m great at listening and giving sound advice/guidance and I would make one heck of a counsellor.
I found a great online course, there are a few seminars down in Sydney but mostly it’s reading workbooks and filling in assessments then sending them off to be marked.
Not only am I killing it. I love it. I jump out of bed in the morning, get my bottle of water, open the curtains, prep my notes and spreadsheet of progress, I get my stopwatch app open and I sit down and read or fill in questions. I am interested and engaged. I really enjoy the context of what I am reading and learning and even the studying itself.
I’ve had 2 push backs but come back fighting and managed to get Competents in all 8 out of the 18 workbooks I have. After this I will have a diploma. Me a diploma. WTF? No one can ever call me dumb again. Most importantly I can’t call myself dumb again.
And the oddest part of me becoming a study girl? I’m considering doing the Bachelor’s Degree. Not for the credit or extra pay but because I want to learn. Weird right?
21 months later…..
So this high school dropout, who spent my youth being bullied and called stupid so many times I believed it; can no longer believe it!
I have a UPC in Psychology
I have a cert 2 in cookery
I have a cert 3 in children’s services
I have a cert 4 in Youth Work
And I now have a DIPLOMA in Counselling.
Not dumb. Not stupid. And not done. Contemplating doing a Bachelor of Psychology next.
I keep saying “no-one can ever call me dumb again” and people reply “no-one calls you dumb” but I did, I called myself dumb.
But not anymore.
Study girl out! Or am I?
At some point..
I have to accept I’m not like everyone else. I may not ever have a long term relationship. I may not have ‘the one’ I have to be ‘the one’ for myself.
Why do I keep falling for the men I can’t have? Why does it hurt so much more when they leave? Why do I always think they are the one for me? Why does it never work out? Why do I not care about the ones I’m with when I’m with them? How do I know they aren’t the one? Why don’t they break my heart?
Why wont anyone fight for me? Will I ever find true love?
Unplug and Recharge.
Day 1 of my farm stay at DUCKMALOI farm:
At 2:20pm I left home and it was smooth sailing to DUCKMALOI farm. Well, apart from the twisty turvy roads, the stunning view and cows but don’t get distracted because there is a monster truck behind me waiting to ram. After road works and school zones and 20km the truck over took me – going over 100km/h in a 60 zone. One part of me hoped he would crash, the other thought part thought better because if he crashes I would be delayed.
I arrived at 3:40. The rolling green hills are turning golden for autumn but still stunning.
And it is raining which is better than heat but I need my wellies before meeting the goats.
It feels so weird that the first thing I didn’t do was light up a cigarette. Seeing the beautiful balcony, that would have been my spot back in my smoking days, didn’t make me miss it. Made me want a beer though haha.
I unpack in the gorgeous cabin and soak in the views and the beauty then gear up for the goats. Wellies and raincoat and side bag for carrots.
I hear them before I see them “baaaaaaa”. I run to their area and they are the cutest but they don’t want carrots. So I get some pellets and grains and they gobble away. They then begin to eat my coat, shoes and pants but I don’t care. The owner, Susie says hello and lets me hold the bunny, who eats the zipper on my jacket but again I don’t care. Susie asks If I want to bottle feed the goats, does a pig something… whatever give me the milk. It was such a happy moment having two tiny goats drinking from bottles in my hands.
I took many photos today but not then, I wanted to enjoy the moment pure, not through a lens, plus had my hands full.
Had a wonderful long nap in the most comfortable bed. Normally I need pitch black and everything here is so sunny and bright but the bed swallowed me whole and rocked me to sleep.
The smells here are incredible. The air is amazing and fresh.
So now for one of the meals I prepared earlier and some mini TV (luckily I only want to watch channel 7 today as they don’t seem to get many channels) then back to this incredible bed.
After watching my shows and picturing myself living on the amazing farm in this beautiful cottage I decided to have a little look outside. I have never seen so many stars in my life. Magic by day, magic by night.
Normally on holiday I awaken at dawn but as I didn’t go to sleep til after 2am and as the bed is uber comfy I slept in til 10am. But then I jumped out of bed, made myself a sandwich, downed an OJ and grabbed the key and my bag. No phone today. I power walked down the path saying good morning to the animals but knowing where I wanted to start. Can you guess? Yep the goats. They don’t have names yet so the grey and white one I call Billy and I strongly feel the black one is Jack Black. They hoovered the seeds and pellets I brought and jumped all over me. Heaven. Then it was getting too hot and sunscreen I had forgot. So I said goodbye and as I left the enclosure they bleeted and cried and it nearly broke my heart. Then I walked past the old stables and saw some Thistle – a place after my own heart. And just stared at the cows and the scenery for what felt like hours. Then I turned around and a little white dog was at my feet looking at me saying: “come on I’ll take you back”. It was time to visit Misty the deer and her alpaca companions with some carrots.
So deer are this delicate mysterious quiet animal right? Well not when there is carrots and competition. Misty pushed the alpacas aside and gobbled the carrots as fast as she could. While distracted Amber, the caramel alpaca came in for a look, very shy she took tiny nibbles of the carrot until Misty moved her along and took the rest. Ebony the black alpaca is still hesitant of me and needs a carrot thrown his way and Misty distracted while he slowly nibbles.
Then the carrots are gone and the sun is getting hotter. Time to retreat. Walk back up the hill and across to my amazing little cabin.
It is so quiet here, deafening sometimes but also amazing.
So now back in my peaceful cabin avoiding the sun and getting ready to read a book. Thank you Elizabeth. Finally going to read ‘Catcher in the Rye’, on my beautiful deck.
Well that lasted one page. The bugs got too friendly so I moved back to my super comfy bed, read one chapter and fell asleep. I’m pathetic.
I do blame the sun though, sitting with the goats I caught some rays that made me sleepy. Or I’m just exhausted from life and this break isn’t just about farm animals it’s about undisturbed rest.
Oh and farm animals. I jumped out of bed just after 3pm and got into my farmy clothes and wondered back down the path to the goats. Got two mini buckets of feed and sat in the shade feeding “Billy” and “Jack” until they get names. Little guinea pigs had just been born and were running around the enclosure. The owner asked if I wanted to bottle feed them again, I said “always” and I did. They didn’t drink all the milk though as they had been fed many times by other visitors today. But I know from their bleets I was their favourite haha.
Apparently a calf has just been born – mental note tomorrow find that calf. And I noticed Donkeys in a far off paddock. I asked the owner how to get to them and where all the sheep had gone. The donkeys would take a bit of a walk to get to and the sheep had mostly been sold as they had grazed everything and there was nothing left for them to eat.
I left my beautiful new friends, the goats and gathered the needed carrots to feed Misty and the Alpacas. Misty was always hungry but the alpacas nibbled a bit and then turned away so I kept some carrots in my bag for tomorrow. Walking up the ever steepening hill I saw them, the beautiful donkeys. Lucky I had 2 carrots. They were so sweet but got bulldozed by a mini pony half their size for half a carrot. Obviously a mob boss.
I walked quickly back to get my phone and camera to snap shot these sweet donkeys but as soon as I got in: autopilot set in; shoes, socks, pants, top off, nightie on. And I’m back in bed. This is awesome.
A bit more Salinger and a bit more napping. Then TV o’clock, dinner, another beautiful sunset and a dvd.
But then this familiar sinking feeling… I want to go home tomorrow. I only wanted 2 nights but when they offered me another night free, I couldn’t say no. But now I wish I had. 2 nights away from the world is enough.
Tomorrow I’m gonna visit the animals again and then what? Nap? Read? Watch TV? All things I can do at home. Plus at home I have a giant TV, air con, a pool, my cats and my awesome parents.
I will see how I go tomorrow but I know that once this feeling sets in I’m done. It always happens; the first night is amazing, the second day is super fun til the second night of quiet makes you feel more alone than ever. Another night here might be a bad idea and take away all the joy this place has brought me.
After a nice chat with dad he pointed out I am here to relax and I am doing that very well. Tomorrow I will walk more and find new animals, after I visit my goats. Then tomorrow night dvds and reading.
Then Friday I will go home.
I will push myself to not take the easy way out and run home. I enjoy my own company so let’s roll with that.
The owner, Steve knocked on my door at 10am. Not that early but it felt like 6am. He brought a dozen eggs, sadly I no longer eat eggs and had to decline. He offered me to stay longer if I wanted.
He said there were bottles and goats waiting for me and if I was up to it we would take a bale of hay to the cows to find the newborn calf. Yes I’m up for it.
It is 2:20 pm and I have just had the best day ever.
After Steve picked me up he took me to the goats and after I fed them offered me a lemonade – 2 days no sugar, mmm yes please.
Then got chatting to Susie. They have great banter between them.
The 4 of us (Finch the dog came too) drove to the cow paddocks and Steve asked if I could open the gates (aahhh a real farm job) we fed a herd of cattle and met the new little bull. Then drove and saw thistle everywhere but it is a weed so I was the only excited one.
I helped (a little) build a swing for the goats and they have named it Tash’s swing. These awesome farmers gave me fresh eggs for my folks and veggies and plenty of soft drinks.
Then it was time to leave, I sensed it and needed it.
They both offered me to stay longer but I’m good, I doubt today could be topped.
My back is quite sore but worth it. Nap time I believe and if I’m not too shattered I need to get a pic with the Donkeys later, but maybe tomorrow?
Best day ever.
I napped and then went to the Donkeys. I can’t leave without some pictures of them for mum. Then I came back watched dvds, ate spag bol and packed.
I just took one last look at the incredible sky and said goodbye to the stars, I doubt they can hear me but they meant a lot to me on this trip. With the animals, the beautiful scenery and the kindness of the owners this trip has been perfect.
Ignoring the moment of anxiety or loneliness last night, which I am glad I pushed through. Today really was amazing. It’s gonna be hard to top this.
Last night in paradise.
Day 4: home – recharged and plugged in.
My dream was to have a pool. I always wanted to be able to swim everyday, without sharing and calm down in water big enough to hold me. Floating slows the racing thoughts. Laps work out aggression. Exercises help my aching back and knees and the whole thing helps my anxiety.
So finally after over 20 years I got my dream come true. But it came at a price, two in fact.
My grandfather passing and leaving an inheritance to build my dream and my hair.
The pool never had the right chemicals and the chlorine was always too high, we didn’t know. We took a sample to Penrith to be tested every few weeks and they sold us many chemicals, the last visit even telling us to up the chlorine.
My long curly red hair turned yellow and green and started to fall out in batches. Then it got shorter and shorter and eventually I decided to shave it all off and start fresh.
We got a different company to sort the chemicals, draining the pool a few times but now I swim daily in peace with my short short hair.
There are levels to suicidal thoughts, in my opinion.
I can get quite dark and think about life being pointless and horrible and have a fleeting thought of opting out so I will stop myself and do something: paint, draw, write, anything to distract the thoughts.
The next level for me is darker thoughts; heavier, all I can think about is how, when and where and then guilt of those I’d leave behind. This is when I have to get into water: a pool, a bath, a shower or even hold an ice cube. This works for me may not for you.
The next level is hysterical tears, no sleep, my heart hurts, my brain is black and I am staring at my “tools” and so close: this is red alert. Call parents/best friend/000
I have been hospitalised at both private and public hospitals and each have good and bad qualities, but at the end of the day they saved my life.
“;” that symbol means so much more to us who suffer with these horrid thoughts. “My story isn’t over yet”
Draw the semicolon on your wrist and look at it every time you want to die and remember: you are not alone, things will get better and your story isnt over yet.