Blog 12

What lies before us and what lies behind us are small matters compared to what lies within us. And when you bring what is within out into the world, miracles happen – Henry David Thoreau

 

 

Because time passes by so quickly, it has a wonderful way of showing us what really matters. The whole living on a high from our wedding day has well and truly finished, it’s now been over a year since we said our ‘I dos’ and we’ve created even more beautiful memories to go a long with the not so many pretty ones. But there’s one thing that will always remain we are both dreamers and if we have to be patient about things for a little bit longer, then that’s ok as we have each other.

I’ve now pretty much come to terms with realising each day can be two extremes, from a smooth happy enjoyable day to a day where I wish I could fast forward and welcome the next day. Gone are the days where I could get up, procrastinate, do my make up and worry about what to wear to uni. Instead I wait to get dressed by someone else and wait to be put in the car to go to the gym, the place I loathe but at the same time love as it’s one of the only things that keeps me going mentally and physically. Its not only a way of keeping me physically active but it puts my mind at rest to know that I will be fit and ready when a cure comes. I know it’s only a matter of time until there’s a breakthrough as there’s so much research going on around the world so I don’t have far to look to maintain my motivation. Each day I have a constant reminder why I started this long journey, it’s hard but I try to be patient and hopefully there will come a time where happiness will show more in my life than tears. I will always have this determination to keep fighting, it’s easy to just exist and make do with how I am now but it’s a lot harder to do something about it. I wasn’t born like this and I lived 22 years of my life as happy active person so why should I carry on being like this, as this just isn’t me!

Just before Christmas I had another chest infection it seems it’s starting to become a six monthly thing but like Nelly says I’ve experienced worse. At times I think my life is pretty grim, but lets face it, there’s always someone worse off than yourself. There are times I wonder how it feels to have a day not being in some sort of pain. It’s either a pain I get from a seam marking me, the agonising nerve pain I get shooting across my body. How would I describe it?  It’s as if my body is being burnt and the excruciating pain I get in my legs its almost like I need to shake them but I can’t. These are only some of the many issues thousands of people have to deal with day in day out, but life has to go on.

Sometimes waiting patiently serves you well and for me recently luck has been on my side. When I first had my accident I was desperate to be part of a research trial to cure paralysis, I didn’t care if it meant being cut open again I would of been there, anything to get me out of this sedentary life. Luckily Nelly made me realise to see the bigger picture and the many consequences that could go wrong. I did however at the start sign up for emails from the Miami Project to cure paralysis which kept me in the loop with news and breakthroughs. So whilst getting on with our everyday routine I stumbled across an email from The Miami Project to Cure Paralysis. It’s a place that solely focuses on spinal cord injury research and is a designated Centre of Excellence at the University of Miami Miller School of Medicine.  Due to me being on their database I have been identified with my level of injury to be assessed for the design of a Neuroprosthetic Device to possibly help restore arm and hand movement.

After having a few up to date check ups with my consultant I sent my data off to Miami. I didn’t have to wait to long as I received an email back telling me that I was a suitable candidate. My trip to The Miami Project will consists of a month in Miami with 16 sessions at the research centre. The assessment visits include external muscle stimulation and brain activity evaluation to help define the appropriate candidates for future implantation. For example my arm or hand will be put in a brace to measure how strong my muscle contractions are. They will also measure movement triggered by electrical stimulation, this will be different strength’s of electrical stimulation. I will also be using a EEG which is to evaluate electric signals in my brain. A grid containing surface electrodes is placed on my head and the grid is connected to a computer. They may ask me to imagine making finger, hand, and general arm and leg movements when I see a cue presented on a computer screen. The grid will record my brain activity when I imagine making the movements. The signals picked up from my brain will be used to control the muscle stimulation. The brain signals will activate the stimulator causing the muscles of my hand or arm to contract, which will result in movement of my hand or arms. As well as many MRI scans and Brain scans, if I am then successful 3 people will have the opportunity to go ahead with the surgical procedure of having the implant device fitted. This is a massive step and decision to make, but something I don’t have to think about yet. There has been some very long sleepless night’s that I have had pondering this situation, a massive opportunity, the next step on the ladder. Before my nana passed away she asked me to promise her that I would get better and I’ve been given an opportunity, which I can’t pass by. Surely if I did I would regret this chance for the rest of my life, I’m so lucky to have the great support around me to back me up so I’m going to take this adventure and go along with it, after all this is the reason why I started my long road to becoming me again. Who knows what will come out of it, it’s a start and it’ getting me closer than I have been before.

Having such an opportunity, has given me a reason to push myself more and as I’ve said before, how lucky I am to have incredible family and friends who go that extra mile for me. Even though my accident was nearly 5 years ago I truly have amazing friends and people I have never met who do a lot of things to raise money for me like run marathons, organise sporting competitions, participate in competitions, do quizzes, make beautiful jewellery… the list goes on. I appreciate every single thing people do for me and I am extremely blessed that so many want to carry on and support my ongoing fight. I wouldn’t be able to take this opportunity if it wasn’t down to the generosity of others. I’ve gained friends and lost friends just like that. Even though I’m still the same some friendships have changed constantly throughout my journey. Everyone has experienced a friend who has simply vanished into thin air and if you haven’t then you’re incredibly lucky!! But I’ve had a few friends walk away because they found me being like this too hard to handle, it might be down to my new limitations or simply because they don’t try and understand how I feel being like this. One thing for sure my relationship between my amazing friends I have kept, is so strong and it’s not down to what we get up to or where we go to hang out but now about the time we spend with each other because life and those moments are extremely important and precious. I find I’m able to talk about my experiences more every day and I think I can talk for anyone who has suffered through an illness mentally or physically that life can change in a blink of an eye, life can be a massive struggle but having someone around you to lean on can take that nasty edge off things. They might not be able to hand you a cure but the help of a friend’s smile and a listening ear can make a whole lot of difference. In a way I mourn over the friendships I’ve lost, it’s not like I blame them for not being able to handle the changes in my life and I don’t blame them for walking away, but I do in a way blame them for not being honest and for not having the guts to say that they’re sorry, how hard can that be? I think of this so very often as there are many memories I’ve shared, after all they are all I have left of them. My friends that stayed with me by my side have taken the time to get to know the new me, reminisce the old me, and discover I’m the same person with a few new funny quirks. They all know I can’t do the same things I did before but we’ve found new things to do. They understand how I feel, and they know I’m always there for them. They’ve sussed out if I’m sad and uncomfortable in situations the only way to get me through it is to make me laugh A LOT. My friends are truly some of my life’s treasures. They’ve helped me realise that someday all of this will makes sense. They sometimes know me better than I know myself, they have always been there to help, guide and support me shared my laughter and dried my tears and their presence will always remind me that I will never be alone. My new friends know me as I am today, they’ve learnt about my life previous to my accident but never saw me before. In a way it’s easier to talk to my new friends about everything as there’s no emotional attachment with them to my past, it’s almost like when I talk about my life pre injury I’m talking about someone I use to know! They can ask as many questions as they like and I can quite happily talk about it, I don’t feel an underlying pressure to live up to a memory of someone I once was and there isn’t a constant guilt of how unadventurous I can be now! Some of my new friends have become my close friends too, they know when my smile is fake they don’t need to ask if I’m ok, they capture the good happy Carly and the vulnerable broken Carly but just like all of my friends we can simply hang out and enjoy each other’s company. I guess that’s what a disability will do to your life, it turns it into an unknown darkness and all you can feel is pain, until with a little help you find the strength to persevere and endure in spite of the overwhelming pain you continually feel. With my disability the change with me isn’t only physical there’s so much more to this than meets the eye. Let me try to explain what a spinal cord injury is like…it could be a 16 year old girl going on her first date and realising she can’t get up the two steps into the restaurant, a 4 year old boy who doesn’t understand why he has to sit down all day but his brother gets to run around as much as he wants. Quadriplegia is a 22 year old girl having to be spoon fed by her mother on her birthday instead of having a party with her friends. It is a thirty five year old woman finally giving birth to her son and realising she will never be able to feel his touch on her skin. . It is a 60 year old man who can’t even move his neck, going to physio every single day for three years and not getting any better.  Paraplegia is a healthy looking twenty eight year old guy trying to love but no one will except him for the way he is. Having a disability can hit you without warning. Spinal cord injuries don’t care if you are a marathon runner, olympic swimmer, ballerina or a bodybuilder, they will take your body away from you in less than a second and never give it back.

I’ve constantly battled to make peace with my past, I try to remember time does heal many things but it does take time. Paralysis has made me scream at the world and hate everything about living but it’s forced me to evolve as a person, become someone who I never saw myself being and its allowed me to be a better person, after all it could only go two ways!

I am Carly, I am who I am and I’m so very thankful to be blessed with many amazing friends in my life who’ll continue to support me until a breakthrough is found. I’ll continue this journey with all of my friends and I will get through this.

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4 Comments

  1. Fay Olley says:

    You are an inspiration to us all. Well done for being so positive and you take up this opportunity in Miami. Keep your blogs going, xxx

  2. Harry Langdon says:

    Great write up Carly. So much progress since your early blogs and great news on the trails. All the best, Harry

  3. Cath Pentecost says:

    A true inspiration and a reminder to live every day to its full. Good luck with your journey xxxx

  4. Rachel Hobson says:

    Dear Carly,
    It’s nice to be able to read this and know how you are getting on. As you say there are so many scientific advances going on and when I read about them I wonder if the new development could help you. The project in Miami sounds very interesting and I hope it can help you.
    Nana would be so proud of you and the way you are handling everything.
    Good luck and I always wish you well,

    Love from
    Rachel xxx

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