A sense of Loss

Yesterday; a normal day. I headed off to vocal lessons, and was in the middle of my lesson, when there was a tentitive knock at the door. “Who is it?” I asked, and the room was silent. The person walked in, and began to speak. The voice, distorted, almost in one pitch, but rising up and down, in a way that told me, something was not quite right. It was slightly incoherent, slurred, and fragile. Her tone, rising and falling, with strenuous and intense effort. It was as if, she had to be concentrating intensely. The syllables strung together, with difficulty. Articulation seemed difficult, and I gathered, her Broca's area, was not working too well. O goodness! I thought. I immediately knew the signs and symptoms. Perhaps, she’d had a stroke, or suffers from vascular dementia? This was a “crash course” for me. I was now learning, in those few minutes, how time can change someone, from the person I once knew, even briefly, to who they are now. Fragile, weak, slightly incoherent, still somewhat with us, but not totally. Knew what they wanted to say, managed to convey it, but with great difficulty. I felt a sense of loss. A sense of loneliness, sadness, that the person was rapidly vanishing. Time has done so much, changed them for the worst. My emotions changed, from happiness, to deep empathy, warmth, sadness, and loss. I was almost on the verge of tears. The atmosphere, slightly uncomfortable, colder, unnerving, slightly strained. I did not know what to think, what to feel, what to say. Those few minutes, had taught me so much, and now I had to sing. Emotional still, over what I had just heard, as the door closed, and the room became silent once more, I waited. The door, like an end to a scene, but one, that will stay with me, for a while. For a few seconds, the silence was all too present, then, it was interrupted by my vocal teacher, “Come on then.” then his playing resumed. I began to sing, one of the most loved songs, “Time to Say Goodbye” Perhaps that lady walking in, was meant to be, perhaps I was meant to be singing this, to her? perhaps, I was meant to feel like this? I was meant to do something. Feeling that sense of loss still, I carried on, and at the end, said goodbye, and left with Nan. I thought to myself, what a difference time can do. What a difference 3 or 4 years makes. How time, can change things. What a sense of loss.

Another lovely surprise, and one that could potentially be good.

Today, I received an email, from a neuropsychologist, explaining a lot more than anyone has. Yes, it will be hard, but I do not care. I am determined to get into neuropsychology or neurorehabilitation. There will be barriers, they must be broken. I have no sight, but so what? There are things in life we must fight for, and my career, is one of them. I do not want to be another person to add to statistics. Another person without sight, who is on benefits, and job seekers. No way! I would like a job, one in the NHS! To be a psychologist, or specialise in neurorehabilitation. A job that will earn me money. Most of all, one that I enjoy, and that will be useful to others. I wish to hear the joy in other peoples' voices, when they achieve. To encourage, and to support. I will struggle, will find the mountain hard to climb, but when I get to the summit, it will all be worth it in the end.

so my second year begins

Although my second year of University doesn't officially begin until October 3rd, I'm already beginning too get stuck into the module. I've already completed week one, and have made notes on the material. I have also saved the glossary for offline reference, should I need it. One thing is for certain, this module is going to be far better than the other one. I won't have to, metaphorically, be constantly obsessed with city Road, and consumer advertising. There is on this module, a lot more about the brain, etc, which I am looking forward too.

Inspiration from the BBC

Another day. I was on Twitter, browsing through the posts, when a post from HeadWay caught my attention. It was about a programme that was to be shown on BBC3, entitled "Me and My New Brain" detailing the lives of young people, who have sustained TBIs, (traumatic Brain Injuries) It showed the rehabilitation they went through, speaking, walking, learning to put their head up, to keep it there, standing, sitting, eating, feeding yourself, washing, brushing teeth, making decisions, coming to terms with your brain injuries, the after affects, consequences, what life will hold now, and most of all, getting rid of the barriers. I suddenly decided, "Wow! I'd love to show people how to use things again, to speak, to walk unaided, to stand properly, to be able to think of the right words to form phrases properly, to sing, to appreciate things, to pick things up, hold them, would love to share their joy at their achievements, be there for them, when they take a few steps back, feel their frustration with them. Help them come to terms with their conditions, even helping them with emotion etc." I immediately emailed someone I know very well, and asked them, would that be a good path to go down? seen as Neuropsychology seemed visual, and slightly harder for me to get into? The answers, were: something along the lines of, that it would be a good option yes. I could still do my BSC(Hons) that I'm doing right now, then do a masters in psychotherapy and psychoanalysis, as well as a PHD, in something to do with Epilepsy, PNES, etc. I would also love to study, along the side, a bit to do with speech, so that I know, if I was to teach people how to speak, how to do it correctly. Surely you don't need a whole degree for that? I'd rather not.. :) I'm at an advantage anyway, as I have my acute sense of hearing, as I do not have vision, so I'm able to hear if they are not forming the vowels correctly. I can pick up accents extremely well, mimic them very well too, and can also sing. Perhaps even, my musical ability will come in useful with them too. Singing, would help them to build up on tone of voice, instead of the monotonous tone, that in my opinion, can be fixed, or at least, worked around. I know though, there is a condition called Aphasia, where people can't speak properly, get stuck on certain phrases, will say certain phrases over and over, in a monotonous tone. They know that it's happening, they can hear it, but find it difficult to control. It must be hard for them. I wonder what life is like, for someone with a brain injury? We see it on the television, but we don't walk with them, follow them everywhere, go where they go, watch or in my case listen, to how they do things, how people react towards them. We should. Actually make the effort to go with someone one day, where ever they are going. Follow them, listen, observe. Ask them questions, if they want too, they'll answer. Help them when they request, or seem like, they need it. Observe how members of the public are towards them. People should not be excluded and should be tolerated. Yes, they may have suffered a TBI, but does that matter? They are the same as we are. Exactly. Their brain, is just, well, different. Different, but cool, and interesting. Let's go on the exciting adventure, that is, interacting with them. I don't see it as a challenge, I would see it as, something interesting, and exciting. Perhaps, it would lead to new friendships if we let it.

Growing up in a "Sighted" World

A lot of people have asked me such questions as: How do you know what colour is? Can you see light? Can you see at all? How can you read? How do you write? How do you get around on your own? I couldn’t do that. Do you dream? Do you dream as we do, or differently? I’ll tell you.I have lived with my Grandmother since about 3 months old. When I was a baby, she would get toys that had a sound to them, such as rattles, even teddybears with different fur or teddies that sung, or even teddybears that rattled, or had a scent to them. I particularly remember one, that had coco beans in it. Thus, he was named, Coco. He was a mini teddy, so was roughly about a foot tall, maybe less. His fur was fluffy, and longish. He sat on my dresser, next to my shelving. When it came to night and day, Nana would tell me: “It’s night time, when there are no birds singing, and there’s no traffic going up the road. The air is also colder.” This, I understood to be night. Day, I established, was when Nana came to wake me every morning, to take me to school, or to my aunts, as my Aunt would take me to school, while Nan went to work. The task for Nan was not that difficult. At least, she never made it so. She had plenty of experience. Her nan went blind, but due to macular degeneration. She knew colour though, knew night and day, knew sun rise and sun set, knew seasons changing, knew lightning, knew the colour of the sea, the colour of grass, of the sky, but I knew nothing of this. I only knew it, through texture, smell, touch, hearing, and taste. Nana was going to teach me the seasons, via smell and texture, as well as touch. It was a cold September morning, and I remember heading over to my Great Granddad’s, where we would receive a lift to school, and she said to me: “What season do you think it is now? We’re walking through crunchy leaves. It’s cold, what can you smell?” I replied “Autumn?” Spring, was the coming in of April, and the April showers, as well as flowers blooming, lambs being born, and other things. Summer was the hot sunny weather, (usually) ice-cream vans, playing Green Sleeves as they drove past, with a Doppler effect, Autumn, was the falling of leaves, and conkers, as well as the smell of old trees, Winter was the crisp frosty days, ice cold winds, snow, and of course, Bonfire Night, and Christmas, as well as the end of the year. The way Nana taught me colour, was again through texture, and all my other senses. Grass, was the smell of the grass, which was Green. The water of the sea, represented blue, it being cold, and blue was a “cold” colour. Yellow, was the sun, a “warmer” colour. Black, a sort of dark, “miserable” colour, associated with mourning, rain clouds, storms, and other things. Grey was a dull day, with no sun and just clouds. Meaning it was cold outside, or rain was on the way. Orange, was obviously an orange. Purple, was a moody kind of colour, representing stress, or anger, or frustration. It was also quite a bright colour too. Though i would not know “bright” in the sighted world’s terms. White, was just like clear transparent glass, see through, smooth in texture. It could also maybe be white chocolate? Brown, was the colour of chocolate, but also a mucky kind of colour. Red, meant Danger, heat, and anger. It was a threatening kind of colour. In answer to the question, do I dream in music? I would not know, but if I hear a piece of music on the television or radio, and I seem to have a deja vu kind of feeling toward it, then yes, I suppose. I might say: I remember hearing that, even though I may never have heard it before. It’s not that hard to get around on my own. I use a cane, but do not get much assistance. I have to ask for it. I keep saying to those who have lost their sight, please, remember this. You knew colour, you knew peoples’ faces, knew the sea, could see the waves rippling across the surface of calm glass on nice sunny days. I never could. I never will. You had something, you will miss it yes. I can’t imagine losing something you depend on, but you just have to move on. Speak to people who have lived all their lives without any light perception, without any sight at all. Not even the colour black, nothing. Just opaque purly mist. All those with sight, blind fold yourselves for a few hours, walk around, without any light perception at all, and see if your mood changes. Dedication To my lovely Nana, without you, I would never be the person I am today, and that I mean. I would not be doing a university degree, I would not be reading braille, writing on a computer, I would not know colour, or be able to tell seasons apart, would not know as much as you taught me. You never cried out for help, you just learned yourself. Got on with the task. Thought of your own strategies. I thank you from the bottom of my heart. I mean this very much. Still now, you urge me to keep doing things, being more independent, relying less on others, even with the added epilepsy, but even that you don’t let worry you. You could stop me going out if you wanted, worry I’ll have seizures, even though they are controlled, or worry that I might bash into something, but you do not. You just have faith, knowing I have enough common sense. I love you always. I always will. Thank you. Samantha :)

It's been a while.

Hello. It's been a while since I've been on here, as I'm switching back and forth, from this blog to my wordpress one. Trying to find my way round the WordPress one is proving more difficult than I imagined, but I'm trying. On the epilepsy front, everything's fine so far. I'm almost a year free, and my meds is working well. There are the annoying perhaps, arm tremors, which are quite embarrassing, but I can deal with them. I guess that's all to say at the moment. If any more interesting events happen, I shall report back. :)

The cold that lingered.

Since December, I have had the cold that lingered. As you know, I went to my Britain’s got Talent Audition, which went quite badly, but after that, things took a turn for the worst. I thought, after the first two weeks in December, I was over the worst of the chest infection, as my breathing had returned to normal. The antibiotics I had been given, had helped. This however, was not to be the case. I suddenly developed pain in my larynx. I could not speak, or swallow properly. This was the start, of viral laryngitis. A singer’s nightmare. On strict vocal rest, I was not to sing for at least four or five weeks. I could deal with that. That was fine, but what happened next, was one of the most frightening experiences, I will ever deal with. The nebuliser experience. Welcome to the world of an asthmatic. Saturday fourth January 2015. I got up that morning, with a slight cough. It had been brewing for a while, and I was hoping against hope, that it would not be the cold returning. It sadly was. That day I developed a slight irritable throat, and I knew what was to come, but knew nothing of how bad it would be. Sunday fifth January 2015. Morning, and I go to take my Epilim. Afterwards, I head back to bed. A coughing spasm takes hold, and I can do nothing to stop it. I could feel everything rattling around in the area between my back and shoulderBlades, my chest vibrating with every breath. This, was not a good sign, as what would come, would lead to me either dry retching, or bringing back my Epilim. In distress, I tried to suppress the urges, but they became increasingly more violent. I needed to get rid of what was there, but with every attempt to breathe in, I could feel it catching on my breath, stopping me getting a decent breath. Gasping for air, and crying out in distress, I carried on dealing with the situation as best I could, trying to tell myself to relax, to try and breathe through my nose. This wasn’t working. Eventually, I retched, and felt everything move, but still, could not get rid of it. This, was how it ended up all day. Breathless, I carried on with my day, eating what little I could without coughing, drinking what I could, and going for a bath, to inhale steam. Monday morning; 02:20 hours; I suddenly awaken, struggling for breath. Literally gasping for air, I tried to shout out to the next room, even just a cry of distress, but all that came out was a violent cough, then, a huge coughing spasm. I could not get a breath between coughs. In the end, I gasped for air, and had to take short laboured breaths. I texted my friend in America, and told him: “I can’t breathe!” his response was short, and rapid. “Tell Nan, and consider calling an ambulance!” With that, sweating, and distressed, I went to Nana, and told her quite calmly, “I can’t breathe” Helping me to the bed, she went downstairs, and called for an ambulance. The paramedics came, and checked my sats, (saturation levels) which were dropping from 96 percent, to 93. I was taken to the hospital, where I was assessed. The doctor was Spanish. Immediately, I began to cough. “Come on, I can hear it Samantha. It’s there. You need to get it up. Come on.” he encouraged. Scared I would choke on my own phlegm, I kept trying to suppress it. I knew I was in the right place should anything kick off, but I’d had enough. My back, diaphragm, chest, and shoulders hurt. “No! No! I don’t want too! I can’t! I’ll be sick if I do!” his response was calm. “So what?” In the end, I had to get help. It was time for me to experience a nebuliser. It’s a little bit like an inhaler, but more powerful, and contains oxygen, as well as saline solution. They gave me it, and I breathed in the vapour. It got rid of most of it, but my heart rate was still rather fast, in sinus tachycardia, (fast, but nothing to worry about.) Although, my experience was not over. I had to use the oxygen a second time, as I had yet another attack. Coughing, and retching, I was gasping for air, my eyes streaming. Finally, after a long and terrifying 6 hours or so, I was sent home, with an inhaler, and antibiotics again. Now, my GP has put me on a steroid inhaler, Pulmicort, to prevent me from going into coughing spasms. Should it work this winter, I will be placed on it next year,should I develop the same respiratory difficulties, as my lungs will always be my weakest area, due to me being born so premature. I wish to point out though, that I am not asthmatic.