Excerpts from a book I'll never write

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...

As a chronically ill person (that still sounds weird) you begin to understand how much your body you can and cannot do. You realise that even though you once had energy to spare, everyday tasks can tire you out when you’re having a bad day. As someone who has always been active and aiming for the top in the sports I do, this has been the hardest thing for me to understand. I get angry at myself when my body can’t handle too much of anything, because really, at 18, I should be staying out till all hours of the morning. I should be sneaking out with friends, and worrying my mum about where I am, rather than if this headache will be the last. It’s a hard thought to put out there, but it’s the truth. My gran died from a brain aneurysm when she fell asleep because she wanted to “sleep off the headache”. It’s something I constantly do! Have a shower, a cup of tea, and then go to bed to sleep it off, and I know that that thought is constantly in my mother’s mind. But back to the point ...