My friends worthy of The Victoria Cross

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 my lungs felt like they were going to implode on themselves I would kick my legs and they’d drag me to the surface where I got that much needed air. It taught me to trust them. It taught me that no matter how close you are to drowning, all you need is someone to pull you up. And now, when that same pressing feeling on my chest returns I know someone will be there.


This challenge that I’m facing now is throwing curve balls left, right, and centre. I have to learn on how to survive this game. It’s a new situation, that’s unique to only me.  And when the moments come that I think I’m alone, I realise that I am surround by people who don’t even know how much they mean to me. They have stood by me, one way or another, on the front line of this warzone called life and absorbed the shrapnel along side me. Some couldn’t handle the harsh reality of my life, so they left, but the ones who truly matter help to clean up the aftermath. Some pull fragments from wounds, others stitch me back up, and then the truly brave ones are there when all that’s left is a scar but I’m so far from being healed. All of them are medics in their own devices. They’re there when I need them, just as I would be there for them. And sure, most of them I don’t see everyday, let alone every week, but when it counts most, I know I can send out my siren for help and they’ll be standing at attention, ready for the next battle that might win the war.

Comments

Post a Comment

Popular posts from this blog

Chronic illness, quarantine, and social expectations.

I think there’s one thing that everyone can agree on, and that’s the fact that we’re living in strange times. Toilet paper is being hoarded, airports are empty, and birthday’s are being celebrated on a conferencing app. With the majority of people self isolating and working from home, they’ve found themselves with free time on their hands to try and occupy themselves. Images of perfectly organised Tupperware cupboards are filling my feed, and new “At Home Workout” videos are making their way across the internet. Despite the fact that I’m still working like normal (essential worker over here), I still feel the need to try and achieve these new feats like everyone else. While the past three years my health has improved, I’m still burdened with the effects of chronic illness. Between brain surgery number one and two I was on an incomprehensible amount of medications for my autoimmune condition, and pain medications around the clock. Now, post-surgery number two, I’m
Read more

An update of sorts

Nine months ago today I had my second brain surgery. Nine months. While most people relate that time frame to being able to grow a human, to me there are so many more things I could do in that time. I could’ve watched The Lord of the Rings Trilogy (extended versions) 532 times, read the Harry Potter series 168 times, or let my hair grow 4.5 inches. I did none of those. Instead I recovered, I learnt my new limits, and I’ve achieved some things that might be normal for most, but for me have been astronomical. I managed to get a job, something that a year ago seemed so far in the future with all the pain I was having, I volunteer my time to help dingoes that are in need, and I’ve finally been able to exercise some more. That last one was a slow and long process that is still ongoing, but I’m getting there. These past nine months haven’t been all amazing achievements; I’ve had some high pain days that have still left me wondering why brains have to fall out of skulls, my fatigue is st
Read more

Doctors, Doctors, Tests, and Scans

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
Read more