Don’t just exist, live

So, at the end of 2017 I was chatting to Nelly in the car and we were talking about our goals for 2018.  It seems like I epically failed my main goal which was to blog more. I genuinely have no excuse and the truth is, blogging doesn’t come naturally to me. I can’t reel words out just like that and even when I can the words simply don’t make any sense or my grammar and punctuation isn’t on point due to my dyslexia! I sometimes scrape along the surface of how I feel and what I go through day in day out. I find myself deleting sentences, redoing sentences because what I’ve written I personally find upsetting and a lack of inspiration. But the truth whilst writing this right now, I’ve had better days. But like most people, it’s easier to hide my feelings behind a smile….

I find my mind constantly drifting and imagining what the world would be like without paralysis. The people I’ve met in wheelchairs what would they be like walking. What job would we all have and would I still hate running. I wonder where my legs could take me where my wheelchair can’t, the textures I would feel in my hands and feet that I can’t. I look around at the many people I’ve met in my lifetime and think how lucky your life is compared to mine and how on earth has this happened to me, but I think it’s one of those questions I will continuously search for the answer and I’ve learnt to live with the question. I say it a lot and that’s because it’s true, but having a SCI I have lost a lot of confidence, being in a wheelchair is a battle. At the start of my accident I found my life at times was very isolated, I found being at home my sanctuary and even though it was a lonely place it was what I needed to do at the time. I’m trying to re gain what I’ve lost, as I want to grow as a person but I sometimes find being isolated again unintentionally by myself and other people. I do find venturing out hard, I think people don’t understand the logistics of it all and how self-conscious being in a wheelchair is. I know people stare and talk about me, I know I’m treated differently, pushed out and not included sometimes.  I wish I could just blend in but I sadly don’t, maybe over a longer period I will find peace with myself and maybe I’ll view my situation in an easier light. Living with a disability I sometimes feel older than what I am. Sometimes I struggle to relate to people my age, they either are off travelling the world, graduated and now working or starting a family. It’s a completely different world to what I live in, I feel like I’ve skipped 50 years and I’m a 78-year-old, it’s almost like myself and Nelly had to grow up and deal with so many adult things a 22-year-old doesn’t necessarily have to deal with and I miss those days of basically not having anything to worry about.

There are 50,000 people in the UK and Ireland living with paralysis due to a Spinal Cord Injury and having a spinal cord injury means so much more than not being able to walk. I can’t remember the last time I didn’t think about the pain I experience, the muscle spasms, incontinence, pressure sores, autonomic dysreflexia, chest infections, severe headaches and the list can go on. But also, its mentally torturous. I have had so many dark days where I didn’t want to be here anymore and begged someone to help me end this turmoil. The waves of cries, screams and anger to the sunken memories that would stay in my thoughts for days. I would pretend I was ok on the outside but would secretly be killing with pain on the inside. I couldn’t count the times I would turn to Nelly or mum and tell them how much I hated being like this. I was struggling mentally and I was being ushered into this deep, lonely world. Even though I sometimes still feel like I’m slipping that way again I can snap out of it after a day or two and I now have the strength to fight my thoughts as I realise how happiness can be extremely positive to my rehabilitation and everyone around me.

Everything has entirely changed and my identity is so different now, everything I did back then, the goals and lifetime dreams I had no longer exist and now my goals and dreams couldn’t be any more different. My old life is completely unrecognisable and it’s weird to think the years of ‘normal’ living has been lost and that’s ok now, I’m slowly adapting to the fact. I say slowly because even though it has been years I am still learning that grief is something that will never end. I have told people in the past that I’m done with grieving but I was so wrong. I cannot describe about how many triggers and moments that flood back the memories or flashbacks of my life pre-accident, I now know these are remnants of grief and rather bottle it up I now allow myself to grieve. The trauma will never leave me but I just need to allow my emotions to come and take my negative thoughts away.

Another goal for me was to appreciate my body more as a lot of hard work and faith has got me my spaghetti arms back, my balance and the slight flicker of hand movement I now have and I sometimes forget the perseverance I’ve put myself through to get to where I am today. My gym is a huge part of this, my love/hate relationship, the thorn in my side. It’s a place I’ve cried with frustration because I can’t pull a 5kg weight but I’ve also smiled when I was able to hand cycle and stand at the same time clocking the miles and laugh thousands of times when Nelly has done something funny. Thanks to mine and Nelly’s determination I now have the strength to hold and feed my beautiful little niece. I never thought I could love another human being as much as I love Phoebe, this tiny thing has stolen my heart. I know I can’t do things that people take for granted, but it’s all about adapting and I’m finding ways to bond with Phoebe. Such a tiny little thing has helped build my confidence, venturing out more as I don’t want to miss out on opportunities in spending precious time with her, as I love her so much! I want Phoebe growing up and learning to be brave, dream big, believe in herself, to keep going, love and always smile. I hope I can teach her at least one of these.

Seeing how easy it is for people around me doing simple daily tasks I get frustrated when I feel people taking their life for granted. The simplest things like brushing my own hair and showering myself…. I wish I could do. I don’t think it’s possible to go through what I have without wanting to yell the blaringly obvious from the rooftops. Sometimes I feel like I need to shake people and scream if they’re in a relatively healthy functioning body…do not let a day go by where you don’t show your appreciation for it. Run, climb mountains, surf, swim, laugh a lot, explore the world, create adventures, dream big because you are SO bloody lucky to be able to. I wish it didn’t take me losing the use of my legs and arms to realise how much I love them. I wish it didn’t take something so drastic to realise something so simple. Don’t just exist, live.

It’s crazy when you look back at a section in your life you and realise how far you have come, I never intended on blogging about my story 6.5 years down the line. I never thought having my accident would turn into something good. It wasn’t beautiful or motivating or inspirational, it was horrendous and it was something I didn’t want to remember at the time. Imagine back then someone telling me when I was lying in the freezing, shallow, muddy river, that one day I would be talking about my story and reaching out to people in some way to help with their struggles. I wouldn’t believe them for a second, I honestly thought my life was over. But in fact, it was only the beginning.

Some days are harder than others but without the kind words from everyone my journey would be a whole lot different if I didn’t have this on-going support motivating and pushing me. So, to whoever is reading this…. thank you.