We have dreams, too

This is my life, it’s not what it was before.
All these feelings I’ve shared, and these are my dreams that I’ve never lived before.
These are my words, that I’ve never said before.
I think I’m doing okay.
And this is the smile, that I’ve never shown before.
Somebody shake me ’cause I, I must be sleeping

Now that we’re here it’s so far away, all the struggle we thought was in vain
All the mistakes one life contained; they all finally start to go away
And now that we’re here it’s so far away, and I feel like I can face the day
And I can forgive,
And I’m not ashamed,
To be the person that I am today.

Staind

Last year of primary school. We did a musical Wizard of Oz, I was Dorothy.

It’s hard to remember now but there was a time, before all of this, when life was relatively normal. I had the usual teenage dramas of pimples, feeling like I didn’t fit in and of course, boys. Bad haircuts. Self-given fringes. Time spent looking in the mirror, wishing and hoping. Wondering what I would be when I grew up. Too long spent in the shower shaving my legs. Hours spent giggling on the home phone with friends. Listening to ‘hardcore’ music like Eminem and learning all the songs that had swear words off by heart. Learning new swear words! Hating and loving teachers, but thankfully never too much of either. Feeling like I sucked at Dance compared to all the other girls. Wishing I was thinner, looked better in ridiculously tight clothing. Too much mascara in a shade too dark. Doodling naughty pictures inside textbooks that are returned at the end of the year for the next group of students to come through. Laughing behind the backs of the really foreign teachers who had no idea what to expect from teenagers, and seemingly no idea of how to deal with them. Reading magazines, doing those awful quizzes (Is your crush REALLY your crush?) and smirking at the outrageous questions asked by other readers and pretending to be horrified, while secretly glad that someone else had asked it and you had the answer right in front of you. Hearing about parties on the weekend where everyone got ‘drunk’ and pretended to be idiots, for something to talk about on Monday. Actually getting drunk, and having to hide your hangover from your parents.

 

 

My health began to decline quickly, and I was no longer around for breaks. That was a good thing, to me, because I didn’t have to face my ‘friends’.

I was never really sure of what I wanted to be, it took me a long time to work out that I would never be a famous pop or movie star. I wanted to help those who needed it, whether it be people or animals. I knew I was a compassionate person, and I wanted to be able to use that as a strength. 
Life changed to quickly that I never even realised it had happened. I went from talking on the phone from 5-9pm to those being the only hours I was awake, and still could barely get out of bed. Some doctors would tell me I was so exhausted because I was oversleeping. I remember my mum getting cross and telling them ‘It’s not like I don’t TRY to wake her up. It’s like she’s in a coma.’ Meals went from whatever was going or in the fridge to carefully planned meals that got boring quickly, and were always followed by a bowl filled with pills. I ate steamed vegetables and grilled chicken. Vegemite on toast was out the window, if I was ever up for ‘breakfast’ (this could be anywhere from 10am to 4pm) I would have to have eggs. I can only imagine the strain my mum was under. She had to keep taking time off work to take me to appointments, and in the early days, collect me from school after I couldn’t go on. 
The school tried to accommodate me, they really did. The vice principal was a stern looking lady named Mrs Valencia (like the oranges! my mum would say) who was actually really kind. Whenever my classmates called her names I used to tell them that I thought she was ‘the bomb’. It was with her help and rule bending that I was accepted into Side, Schools of Isolated and Distance Education. Because I had only just started year 9, the law required me to do so many classes and hours a week of studying. Mrs Valencia arranged for me to be able to go and rest in the nurses office whenever I needed to, helped me pick the 2 classes I wanted to keep up the most at school, Drama and Geography, and I began to do the rest at home. When I say began, I did try. But when you are awake for 4 hours a day and struggle to shower by yourself, those 4 hours disappear quickly. I fell behind and avoided calls from my teachers at SIDE. But if you can imagine the whispers you get for leaving class to go lay down instead, it soon became, to me, not an option. I was the girl who was allowed to eat in Geography class, usually carrot sticks, so I could take medication and nutrients at specific times. I was called out to see a teacher who spent all her time working with troubled students, and me, because I needed the help to keep up. She was so kind to me that sometimes I would cry. My drama teacher disliked me greatly and made no attempts to hide it. She gave me D’s through the whole year, but the end grade ended being decided by someone else, who, seeing my body of work, gave me an A. 
Man I hated going to drama with that teacher. If I had to leave class she would sigh loudly and make some form of comment. Drama went from being fun to incredibly stressful.
When my classmates graduated, I was still working on year eleven. I didn’t end up completing the ‘school’ year.  

Temporarily a ranga. I went to ‘Leavers’, teachers decided to sign me off as a graduate so I could have the experience.

I’ve had part time jobs when I’ve been well enough, but it never lasts because I get sick. After a while the employer gets frustrated, doesn’t understand, and I end up regretting how much effort I put in, how much I wore myself out, for those ungrateful people who had no clue. Today, I volunteer. I’ve always been very open and honest about my health when volunteering. My first RDA centre didn’t really understand though. When we moved, and I moved to another, much closer RDA centre, I was incredibly lucky. They already had an employee, a lesson coach, who’s health would also unexpectedly fail and would need time off.

Me rockin’ out my Disturbed shirt on Cade. I miss that shirt. Someone stole if off my washing line, I think.

While at RDA Brigadoon I met some wonderful people. The lady who started that centre, and still runs it, was a second mother to me. Once I had a terrible panic attack, I’d been feeling really unwell and I was afraid of going back to the hospital, it all just hit me. They tried to get me to go into the office but I couldn’t get passed the main lounge before I collapsed onto the floor. I was shivering and cold as usual, soft clean ex-hospital blankets that were now used for horses were wrapped around me. Shirley sat behind me while I rocked, wrapped her arms around my chest and began to talk. She told me stories of past happenings at the centre before I’d arrived, good and bad. She talked about her family, my family, sunshine and flowers. I don’t know how long we were there for, but eventually I realised I’d been so busy listening to her speaking in my ear and rocking with me that my breathing had slowed down, the panic had eased.
Shirley was also the only other person with me on the property the day my little Harry passed. Shirley lived on the next property and her 2 little dogs often joined us out there. I usually brought Harry with me because he would fret without me. His death was instant, a hoof to his tiny head. His joy of running around those paddocks is what I love to remember. But Shirley was there, she experienced the horror and sadness and grieved with me. She had to tell me that he was gone. 9 years of being my constant companion, and my little Harry man was gone. I screamed and I cried and I abused God and Jesus. Shirley had to speak to Roland on the phone since I was hysterical. He came down in just PJ bottoms, no shoes or shirt, and he arrived so quickly, he must have done twice the speed limit. Roland stepped up that day, as he always does when it is needed. He was my rock and continued to be for the coming months as I mourned Harry. 
And that employee, would also has health issues? She became my best friend today.

After Harry died, we looked into getting another dog, but soon were informed by our landlords that this was not an option. Unfortunately with the prices of rent in Perth, and Roland seriously concerned about my wellbeing without a day time companion, we had some decisions to make. Roland wasn’t happy in his job either. We had always planned to move to the country later in life, but suddenly it seemed like the best option. We packed up and moved within 2 weeks, 300 kilometres east into the Wheatbelt.

My beloved Harry man, RIP

Unfortunately for me, this meant leaving my best supporters- my mum, my friends, therapists, and my beloved RDA centre. After we had moved out to Merredin, I didn’t do well. I was in hospital 3 times in 10 weeks, starting with my birthday and ending after the new year. I became very weak because of all the vomiting, and was barely coping to cook one meal a day and shower myself. I became more depressed. One night Roland and I had a big talk, because I obviously wasn’t happy. I needed local friends, I told him. In the end, I posted on the local Facebook page. Ah Facebook, how I love you. I posted that I was searching for horsey people, got quite a few responses, and it became a rolling ball of chained events. I began emailing a local young mother frequently. We would talk about our days, our past, our kids (mine fur and hers people). I was both surprised and happy to have found someone to have things to talk to about. I also found another horsey charity to volunteer with. While not RDA, its brought me different opportunities. Ride for Life is aimed at teaching life skills through horsemanship to young people, teenagers, who are ‘troubled’ for whatever reason. It is run through a church, but is not preachy, and runs during the weekends of 2 months of the year- March and August. The first Saturday in March I picked up a young male teenager and together we headed for the unknown! I had been to a meeting but I still wasn’t really sure what to expect. We started with 4 teens in March, and ended up with 3 ‘graduates’. I met some of the horsier locals through Ride for Life. I’ve been surprised to find that some people in the horse world aren’t very nice. But I guess the same goes with everything. 
I really pushed myself in March. I only missed 2 days out of the 8, and by Friday I still hadn’t recovered from last weekend. By the time March was over, I felt like I needed to sleep for eternity! Thankfully a decision has been made since to make days and weekends shorter for the volunteers, so I will hopefully cope better in August. Though most of it is my fault- I love being involved and I hate to miss anything!

Having a ride at our local ‘beach’, Baandee Lake, during a Ride for Life session. Blue is being ridden by Josh, and I’m on the massive Abbey

The very best thing to have come out of RfL for me, was Blue. I met Louise, our town’s vet, volunteering. Her children have all grown up and moved away and are having their own children, and she felt Blue wasn’t getting much attention. She offered for me to ride him whenever I like. For me, this is a dream come true. Blue is a wonderful horse,  generally very chilled out and VERY different from the heart-attack horse I’d been caring for in Perth. Ellie had a good heart, but she would jump at a branch snapping in the wind a kilometre away, and didn’t exactly make me feel safe. Especially after Harry’s death, I needed to learn to trust horses again. Blue helped me regain that trust, and the confidence in myself that I CAN ride a horse, and I’m not a sack of potatoes! I remember the first time we rode together, cantering down a dirt path through the bush. The only word I could think of was ‘Liberating’. When we slowed down, I stopped him so I could give him a proper hug, and thanked him over and over again.

We are so not hardcore.

Blue is a senior, turning 25 years old. I am disabled, and feel like I claim a ‘handicap’ title, like in golf. Together, we might not ride for hours at a breakneck speed, but we enjoy each others company, we have fun, we are a team. Often I am too tired to go for a ride, but even on those days I try to go down to see Blue, to give him a cuddle, a groom, and some carrot sticks. I’ve enjoyed being able to share my happiness with others- my email friend in town has enjoyed his company, and her toddler has ridden him too (with a leader, of course!) I love being able to share the feeling that I get from him with others. I plan to get Roland on him for a ride in the near future!

But I still have bigger dreams. I would love to own a house on just enough land to keep some horses, with a veggie patch and a big yard for the kids to run around in. I would love to have kids! I have yearned to be a mother since my early teens, but I have always known I am not capable of taking care of a child right now, in this condition. 
The scariest part is, I don’t know if I will ever have these things.
Will I ever be well enough to have children?
Will I even be able to have children if I choose to?
How will I ever be able to have enough money for land, when I cannot work, when money is spent on doctors and tests and medicine? 

Seeing properties that I can easily fall in love with breaks my heart into pieces, and I need to remember to stay away from looking at those things. I have hope, but too much hope hurts. Because there is always reality, logic, and the uncertainty of my body’s future.
Then I begin to think about others who dream. Not the most obvious that you would think of, for example not a refugee or a prisoner of war. But perhaps the brain damaged, the paralysed and those born with defects. I’ve never closely known somebody with Down’s Syndrome, for example. As they get older, what do they want? I’ve seen articles about mentally disabled people having relationships, falling in love and even getting married. But do they want more than that? Do they want a home away from any carers, children they can assume will be born healthy, the simpleness of a normal 9 to 5 job? I’d had to assume, those who can understand that concept, would want it. Would badly want to be normal and have normal opportunities. Drive themselves to the shops, not have strangers stare. 
Then there are the physically disabled. There was recently a program on TV called ‘Love Me, Love My Face’ about a guy named Jono Lancaster, who was born with Treacher Collins Syndrome. He has a beautiful girlfriend, and they were exploring their options of having a baby born without Treacher Collins. While Jono is still able to have a job and a relatively ‘normal’ life, he is lucky to have survived his TC as many others born are with worse deformities and do not.

It feels like so many healthy people see disabled people as somewhat less, almost as though we are more primitive. We are no such thing. We came into this world more or less the same way you did. We grew up with dreams and hopes, stories of happiness and granted wishes. But we also know the harsher side of life, in all different shapes and forms. 
I’m grateful for my pension, I truly am. But I will never be able to afford those finer things that I want, my dreams. If I were healthier, I could work hard; I could join a profession based on what I want to do, not what my body is capable of keeping up with. I could have boozy nights at the pub, weekends away and holidays overseas. Travel plans wouldn’t involve the knowledge of how far away the nearest hospital will be, the quickest route there, bags packed with supplies expecting the worst. Only plans of exploring new places, experiencing new things and giggling while we romanced the night away knowing there are other guests, staying in the next room.

So I will try not to hope too much. Too much hope is unhelpful, it only sets you up for a bigger fall. I will remind myself that things take time, that I cannot predict what the future holds for me, what life will be like 10 years from now. After all, 10 years ago, this isn’t what I had seen ahead of me, this wasn’t in my plans. Life is full of surprises, good and bad. Lets all cross our fingers for some good ones, but try not to be too let down when we get the bad instead.

My good ‘surprises’, Brandy and Missy