Excerpts from a book I'll never write

It’s still a crazy phenomenon to be classed as chronically ill at nineteen. Never would I have thought that I would need to plan days a head for activities so I can rest and make sure I have enough energy to actually do what I want. Five years ago I was the person who was constantly moving. A leg would be bouncing or I would be running. Now, it’s a stark contrast. A planned weekend in Melbourne was something that was a little daunting, but exciting nonetheless. There was a constant thought in the back of my head of what to do if something was to happen, like an intense headache, or a day where I was so exhausted I couldn’t get out of bed. But, that didn’t happen. I’m extremely lucky to have a best friend who understands my health. She’s seen me when I can’t move, when I’ve gone pale and almost thrown up in Kmart, and she’s sat by me in hospital so I wouldn’t be alone. Knowing that she wouldn’t be annoyed helped ease the worry. Our second day in Melbourne was my worst. I don’t know...

The fog surrounding my health has cleared just a little bit. These past few months have been a little hectic. Just after my birthday in October I had a neurologist appointment and we went through some of my other non-chiari symptoms, and he suggested that later down the road he would send me to an immunologist. After my trip to Thailand fatigue became a huge impact in my life. I was struggling to do things that otherwise I would have been able to do in an instant. So, after waiting three months for an appointment I finally saw Dr B. I’m not going to lie, I was nervous as hell going into the appointment. I felt like I didn’t have any true symptoms, unlike with my chiari and so I was scared he would look me over and say it was nothing but the effects of diving. Thankfully I was wrong! He joked and made me feel like an actual patient worth helping. So there were loads of test to be done. And the results: an anti-Ku (anti-goo) antibody in my blood. I’ve tried to look for some explanat...

It’s the beginning of a New Year, and most will be using the phrase “New Year, new me!” I don’t fall into that category. In the past year so much has changed that I just want the old Jordan back, the Jordan who could dive without worry, the Jordan who had endless amounts of energy and that never seemed to slow down. I want the person who I was, not a new one. But, as the great Mick Jagger says, ‘you can’t always get what you want’, and so, I’ve learnt to adapt to what I’ve been given. This time last year I was with a group of friends down the coast, having one of the best times ever. We swam, we laughed, and we stayed up till all hours of the morning just so we could see the starry sky that you can only get on a cloudless night. We were 18 year olds who had just finished school and were relishing in the freedom. Now, all but one has finished a year of uni and are getting ready to start a second. And then there’s me; I didn’t go to uni, I wanted to take a year off to not have the s...

Some days all I can think is “this is it. This is the time where my body gives up and shuts down to the pain. This will finally all be over.” Those moments usually come when I’m having one of my really bad days. It’s usually after a run of good days and my body can’t handle the strain, so I flare up. The brain starts running down, I forget things and am in a constant muddle. The headache overtakes all of my senses, the loving voice of my family only brings me pain and I struggle not to flinch at my mothers soothing tones. Smells set off the nausea; the light sensitivity means I don’t leave my room. I’m isolated, caught in the trap of my mind with no foreseeable way out. But, I force myself to remember. Remember how growing up I spent most of my time with boys seven years older than me, but I never slowed down. When I wanted to touch the bottom of a 5-metre swimming pool, just like them, they would hold my ankles and pull me down. Once to the bottom I would hold my breath, but when...

The law of conservation of energy states that the total amount of energy in a system remains constant ("is conserved"), although energy within the system can be changed from one form to another or transferred from one object to another. Energy cannot be created or destroyed, but it can be transformed. When you take into account the law at its simplest form; energy cannot be created or destroyed, but it can be transformed, you begin to understand how truly complex we humans are. All the energy from the Big Bang, or depending on what you believe, the days of Adam and Eve, it is still here. There is no new energy, and none has left this twisting kaleidoscope that is the universe. Each new baby is made up of the dust from the earth dinosaurs walked on. Some may have the energy that helped Cleopatra become the person she was. We have molecules of stardust and comets and whale tooth running though of veins. The same energy that give the lioness her power, is inside of each...