Just because someone carries it well, doesn’t mean it isn’t heavy

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It’s spinal cord injury awareness month and I thought long and hard about writing something. 

Throughout the past 10 years I have met so many remarkable and incredible human beings. I have realised that having a spinal cord injury isn’t the end of the world, as devastating and tragic it is you can still have a beautiful happy life alongside a grieving one. 

But saying that…..let’s say you are reading this with an overall general curiosity about living with a Spinal Cord Injury. So put yourself in mine and others scenarios for a second. It’s easy to read and listen to but try to divulge it imagine this is your life. 

For some people their reality is lying awake in the middle of the night freezing cold, shivering. The simplest thing most people would do is to just pull the duvet up but for some they can’t. You can’t move your hands, arms to fulfil this simple task. So you just lay there, hoping that sleep catches you up but most of the time you’re counting down the quietest, darkest hours until the morning trying to stop your mind wandering to a place where you’ve tried so hard to forget. Imagine not being able to hug your loved ones because you physically can’t. Or having an itch and not being able to scratch it. Imagine having this permanent inescapable pain but trying to live and smile through it. Imagine going to a restaurant or meeting up with friends and realising that there are steps and you can’t get inside the building, as no one has thought about wheelchair access. Imagine craving to be on your own but you are constantly with a carer and don’t have a second to think about your thoughts. It’s not just the dealing with being in a wheelchair it’s the situations you constantly find yourself in. The continued blows you are forced to deal with. For me it’s not just about losing the ability to walk. It’s the bigger picture.   It’s the seeing your daughter hurt and not being able to pick her up and console her even though you so desperately want to. It’s choosing clothes that are comfortable for sitting down in but not necessarily fashionable. It’s the person naturally reaching to shake your hand but you can’t reach to shake it back. It’s the looks you get when you are out with your family or friends and you end up feeling like an animal in the zoo.

There’s so many of us who take each day for granted and for some they appreciate every moment on this planet. You see a spinal cord injury isn’t just a medical condition, unfortunately that just scrapes the surface.  We are all different, some people crave for a cure, whereas some are happy with their lot and even if there was an available cure tomorrow they still wouldn’t go for it.

But for everyone the challenges they face are unimaginable and somehow with true strength and grit determination they have to just survive. Like everyone, life serves us with highs and ultimate lows. From day one to being told the worst case scenario of your injury to the happiness you feel when you find a slight improvement when it comes to movement. The struggles with inequality in society can be unfair and very constant. But for me, I find myself dealing with these situations more often and struggle to understand the difficulty of how disapproving people and places can be about a disability. We are all different, we all have our quirks.

Everyone has these sliding door moments in their lives. One day I could feel pretty amazing but then another day I could be in so much pain and not able to do anything. I’ve learnt that these moments are like a thread being sewn into my identity. unpredictable and sometimes challenging but its part of my story. I have overcome so much living with a spinal cord injury but how remarkable, cruel, exciting, frightening, magical and raw this life is I now lead.