When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.
– Lou Holtz
It’s hard to know how to start each blog differently but I guess typically it’s best to start from the beginning!
Trying to remember how to pack and what to pack always gets me in turmoil. Clothes, shoes, underwear, cosmetics and medical supplies, oh how my life has changed. Gone are the days of the excitement the night before, but instead hello to the days of fear, apprehension of flying, being in a foreign country and the unknown.
Whilst boarding the flight I had no idea what to expect, it felt like the wind had blown loads of branches in my pathway and it was difficult to see a way through. Then came the grab of a familiar hand, Nelly’s! his strength and confidence was what I needed to remove the branches of fear. British Airways were extremely helpful and tried to facilitate my needs as much as they could. Having to pressure relief every 2 hours or so, the constant fluid intake which was needed to keep everything hydrated and a few hitches here and there but we survived and we even met the Captain who was a lady and the flight was nice and smooth!! There were a few occasions in Miami where I felt and screamed that I wanted to be home, the change with new surroundings and the realisation that this holiday wasn’t going to be anything like I was used too, was hard. This was something new to deal with and the restrictions and barriers were frustrating and suffocating. Trial and error occurred as getting into the pool was a group effort with Nelly at the helm but once I was in, it was a tranquil serenity something which apart from that is really hard to describe. It’s amazing how something so simple as water could have such a positive effect on you. The freedom my body felt and the texture of the water on my skin was unreal. I’ve never been able to put my head underneath the water since the accident, maybe its the fear of drowning and possible flash backs of my accident, well whatever it is, it tightens my whole mind into an anxious state. But since Miami was the time to face my fears, with the help of Nelly I did exactly that. It almost felt the negatives were rushing out of my body and I was waving goodbye to an old chapter of my life, which I will never miss.
Having an opportunity to experience how the Brucker Biofeedback Centre works has honestly brought back a different changed Carly. The positive and encouraging results I was getting felt and gave me the reassurance I’ve been looking for since the accident. It’s extremely hard to explain without witnessing the treatment but here’s an explanation from their website. Biofeedback is not a treatment in the sense that something is done to the subject. Similar to learning to ride a bicycle, biofeedback teaches users to sense and make use of potential abilities through experience. For example, it’s impossible to explain the balance needed to ride a bicycle to someone else. They need to feel it for themselves – but once felt and controlled they retain the skill for life.
In practice, biofeedback for SCI uses external electrodes to sense subtle neural signals that reach the muscles when the subject tries to move them. The electrodes relay this information to a device that’s able to represent the signal and its strength visually, or with sound. The Brucker approach usually presents a line graph that changes with increasing signal strength.
Subjects are directed to contract the monitored muscle. The EMG system is able to sense and reveal slight neural signals that the subject may not feel. Once a signal is found, the subject is instructed to try to focus not on the arm or leg, but on the graph, while they attempt to make the graph grow. If sounds are used, they’re instructed to turn the sound on or off. For example, when attempting to decrease spasticity a subject may be directed to turn a sound off, which would correspond to controlling the unwanted ‘spasticity’ signal. When directed to increase a motor signal the subject would try to turn the sound on.
With trial and error and repetition, subjects may find more effective pathways for producing desired results. Once these pathways are found and used, the brain remembers where they are and how to use them. Improvements gained in one biofeedback session are the starting point for the next.
I was lucky to have 14 sessions, in which they tested my neck, shoulders, all back muscles, all arm muscles, wrists, fingers, thumbs, stomach muscles and hip flexors. Every muscle had a signal going to it . My neck, shoulders and tops of my arms were extremely strong and showed a higher percentage but the fact the signals are getting to every part they tested is encouraging. I’d like to think the damage that has been caused may of blocked some signal pathways but other pathways have been found to help reach their final destination, there’s hope. Each muscle was tested more than once for me to get a repetition on how for instance to contract my triceps properly. Although the sessions were short the impact on using unknown muscles was mentally and emotionally draining for me. Everyday felt a little closer to the pieces of me that I thought I would never get back, what I thought was lost was just misplaced. The treatment was unique in itself, the physio I do at home is physically challenging whereas nothing could of prepared me for the mental workout I was experiencing on a daily basis. Each day since Miami I visually see myself moving further towards body movements that can now be demonstrated. The slight flicker of my wrist thanks to the biofeedback has progressed into a slight tiny movement that sends tingles each time I think and move it. Miami lived up to my expectations and more, I thought I wasn’t ready for any more adventure but I was, Miami my paradise, a home that I found. It was the place I could feel most at ease, smile and go out without thinking my usual thoughts of why are they looking at me as I just seem to blend in, just how I wanted it.
I always liked to be in control of my life, I use to close my eyes and imagine a beautiful future that was happily molded in my head but learning the hard way I’ve found very little of what I do now is controlled by me, it’s more what situation I’m in I’ll have to accept, deal with it and carry on living. Easy said than done! Well, we, meaning (Nelly, Mum and Kelly) nearly made it home almost in one piece. It’s not too much to ask, but must be our bad luck as reliving the echoing cries and the following sadness is something I can’t quite to this day really comprehend. My Mum the one who keeps me safe, whose cares and protects me is lying in the road from falling out of our moving car and her leg has been run over. How is this happening. Surely this isn’t really happening! We were on our way to the airport to catch our return flight home, pretty straightforward? but the car was so full, if it weren’t for me going to America I wouldn’t be seeing us in this horrible situation. The torture my mind was going through. I found myself looking in the passenger mirror and watching my mum in utter stillness on the floor hoping she would just get up. Those odd minutes between her moving and talking seemed liked hours and thankfully help was near. Nelly took control of the situation whilst Kelly comforted me. The surrealism of the situation suddenly comes and hits you and I guess you just have to wipe away the tears and support your Mum through this miserable time the best you can as for once my mum needed me to be the strong one. After my mum was rushed to Miami Hospital the long wait concluded to my mum having a broken leg and severe bruising. With a couple of extra days hanging around a hotel room we were finally able to fly home but the trauma didn’t end there. Home couldn’t look any nicer to us all, but within a week of being home we found ourselves in an unstable emotional situation. The break in Mum’s leg wasn’t a bad break but she had soft tissue damage, the skin had died and there was a Hematoma underneath. She was admitted to hospital to have an operation, which consisted of clearing away the damaged skin tissue, the hematoma and finally she needed a skin graft, but this could only be done all in one go in a hospital 40 miles away. Waking up at home and being use to that familiar voice and face that has constantly been there everyday for over 2 years, I felt totally lost. Knowing she was in hospital on her own away from home tore me apart, I felt so empty. Although Nelly, Dad and my brother were at home, my Mum was missing and it’s like not having one of the main ingredients in a recipe. The one I like talking girlie stuff to, my best friend and someone who also consoles me when I’m down but at that moment in time she was missing. Kelly my amazing PA who has been with me since day one filled the gap, she listened and helped not only me but everyone in the house and she understood how I was feeling without having my Mum around, It’s funny how when things happen you find and see how people react to bad news and I can honestly say I now know how my family felt whilst I was in hospital…..helpless. Finally seeing my mum back home uplifted and cleared the dark cloud around my life and the saying is true you never know how much you miss someone until they’re not around. With Mum back in the house even though she couldn’t do anything to help it was enough to know she was back where she belonged. It was still hard not being able to help her out, to take care of your mum and cuddle her it’s just another something I have to adapt and help in my own different way.
The past month has been really difficult dealing with yet another different chapter in my life, the anger I’ve felt and the tears that have flowed once again and there have been a lot !! but we all are slowly getting back on track. Adapting to my mum’s absence and unable to help when she was back changed my routine and daily exercise but it has made me think how lucky I am to have a mum who has given up her job and her time to care, to help me regain my own life. Trying to keep busy has been key through out this month, Nelly has done as much as he could to keep me on the right level, gym, driving adventures and treating me to ice cream, what a lovely chap he is! and yes I know I’m very lucky.
It’s so important to me to get out and about, it’s just something to focus on, and after all I am still the same person. It’s always harder to escape down here in Cornwall from being accepted as the same Carly but in a wheelchair has become a regular difficulty as I always keep saying. Places where I’d love to go aren’t wheelchair accessible and why do people stare so much? You can say something to me about why, until you’re blue in the face but I still can’t grasp the stares and the frequent softly softly voices people do whilst talking to me as I’m still me! The moment when I am accepted and included for being the way I am gives me a sense of relief that life on the outside can be pretty good sometimes. The friends and family who show me that I haven’t changed are the ones I’ll always be comfortable and smile with. I’ve found some friends have disappeared or excluded me but I’ve gained other friends and realised that there are many people in this world that are just not worth the worry. I still find each day too short for every thought I want to think, for all the places I want to visit, all the things I want to do but most importantly all the people I want to thank. So the best way to say it is on here, I’m very lucky to have such inspiring and encouraging people around me who are willing to help me out in my situation. The excitement and joy I feel when I hear friends achieving, driving and pushing themselves for me has and still is overwhelming. The adventures and stories they tell is something I’ll always cherish. Unexpected kindness is so powerful, the help it provides me is key to where I am to where I was and proof that nothing is impossible with help.
As days tick by, the thought that is permanently in my mind is my beautiful wedding. The day has been set and the goal of me walking down the aisle somehow is still there. It’s the planning and the expectation I have as It’s hard not to get excited but at the same time the worry of having so much pressure I’ve allowed put on myself to make everything perfect is getting to me. I can’t help but dream but the stale taste of being in a wheelchair is permanently crushing me to a point I can’t see anything past the metal frame that surrounds me. The desperation and determination keeps me focused on walking again but sadly it’s one of those unknown answers of when. For a long time I’ve been stuck in a rut. Wanting to achieve more within myself and my life, I’ve refused to believe that I have to change my dream of walking down the aisle. It’s such a significant goal for me, I can’t explain why exactly but it has chaotically been with me since I had my accident. It’s a sort of thing that will never leave. The understanding that not being able to achieve my goal has been extremely difficult it feels like I’ve given up, lost hope but I honestly haven’t. Allowing the pathway of my wedding to change frustrates me but I know deep down it’s perfectly all right…
Since Miami I feel I’ve been given a chance to change my perspective in life, it may have taken almost 3 years but something has changed and everything has come a lot clearer to me. I’ve accepted challenges, gained happiness and realised how important family is. There are still times when I desperately struggle to see the surface but something keeps me going and makes me realise that it doesn’t determine where I go it’s just determines where I’ve started. Sadly life isn’t simple, it’s harsh, prickly, dark and tragic but sometimes the only option is to sail with it I hope one day I’ll be able to look back on my life like a good days work, what was done was good and I’m completely satisfied with it. Until then I’ll just keep working hard on it.
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