Emotional storm.

While being at University, I’ve realised, through many different experiences, how I want my career path to pan out. Through having friends with unexplained seizure-like activity, to PNES, and then, having to switch meds, on-top of this myself, my emotions have been up and down. From happy one minute, to down, wheepy, angry with everything the next. That’s Keppra for you. When I was browsing facebook the other day, I saw a post, that reminded me of the book, Gifted Hands, by Ben Carson MD, a neurosurgeon, who battled racism, in the 1960s, to get through school, to university, and pursue a career, in neurosurgery, doing pyaneering surgery, a seperation of craniopagus twins, (twins joined at the back of the head) and also a hemispherectomy, (the removal of one hemisphere, of the brain, in cases of severe epilepsy) I read his book, and listened to the movie that was made, and immediately, was inspired. I want to help others, from coma, to recovery, through recovery, to finding their voice. To help those find their voices, who have lost it, through other neurological conditions, or to give them the best solution. Even those with autism, genetic neurological conditions, life-limiting illnesses. I want to specialise in all of it. But see people in different clinics, eventually. If I say I will help you, I keep to my word. I don’t want to be one of those doctors, who say, it’s nothing, it’s in your head, or, what you’re seeing, will disappear. I will be honest, up front, to the point, will fight for you, fight for your carers/parents, and advocate where necessary. I see someone in distress, and it’s like something tells me, You need to go over and aid them. Stop them struggling. I can’t just listen. That’s been a long standing belief of mine. I just thought I would write this, and explain how I feel. To see peoples’ stories on fb, of people struggling, with medical professionals, having seen it first hand, having my friend, being told she’s faking her seizures, by first respondors, having her not believed by neurologists, doctors, and having her have to admit defeat, and have her worry constantly, as well as her mother not understanding her, which was not her fault. Yes, I’ve been there. I faught for her diagnosis, even arguing with neurologists, and doctors, in front of them, demanding something be done, that they do scans, and I think they were shocked, that I knew so much. So yes, when I say I will help you, I mean it. It’s my passion, to help others. To fight your corner. To get you the best care you can get. To be the person who believes you, when all hope is lost, and to be that person who rescues you, from the bottomless hole of people telling you different things, and acusing you of being fake, and attention seeking. I know it’s not your fault. I know. I understand you. I feel your frustration. I feel your anger, as a carer, I feel the lack of awareness, of education, of not knowing how to deal with your own son/daughter’s unknown or believed to be fake condition. I feel the anguish, of “I don’t know what I’m dealing with.” I understand. Let me help you. Let me, when qualified, fight your corner for you, give you the information. Give you the resources to help you, your son/daughter, their team of doctors/therapists. Let me be the person you can call upon, and know, that it’s not the end, and you don’t have to admit defeat. We will win this battle, together.

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Life experience, is this the crash course for working life?

A normal day, started out with me and my friend, heading off to do our usual things, like her commuting to come in, and me, getting ready for breakfast. After a while, when we finally met, things went dramatically downhill fast. I ended up having to make my first, emergency call. Nervous, I held the phone, closely listening to my friend’s every breath, move and sound. Following instructions, I continued. All the while, feeling calm within myself, knowing it was for the best. A short while later, we arrived at hospital, where I waited with her, for about 5 hours. Finally, she was discharged. I cannot and will not mention names, nor say her diagnosis, or diagnoses, for confidentiality reasons, which you will and should understand. We arrived home, tired, and cold.

Yesterday, 16th January. Was this the ultimate test of my skills at staying calm?

The day, yet again, started out normal, as normal as it could be, anyway. We went to breakfast happily, in the driving hail, bitter wind, and sleet. From there, the day was about to take a huge turn for the worse. Something I was going to have to sit through, and deal with, while awaiting sighted help. I could only do, what I could, and that was about to be tested. After breakfast, we went home, where things took a dramatic slide. Suddenly, I was faced with cluster, after cluster of suspected, and I will say suspected, from my view only, tcs. I have epilepsy, so I was guessing upon my own experiences. Sitting there, I was talking to her, and trying to get her calm, as calm as possible. It wasn’t working. Suddenly, I heard what I did not want to hear, in my opinion, and from my ear assessment only, again, suspected airway issues. Upon exhaling, I heard very raspy breathing, and shallow inhaling. Starting to panic slightly, I tried to find something, that could get some air in. Thinking she was struggling for breath, I ran around the room, looking for something, anything. I did not want to call an ambulance again, knowing her wishes. I tried to remain calm, but my heart began to race. I could hear every sound, getting worse. What do I do, was going round my head. I started questioning my own abilities at this point. I needed help fast, but couldn’t get any. I was limited to what help I and she both wanted. I was infact, stuck. My heart racing, and breathing increasing slightly, I carried on my work, I knew I just had to focus, and remain calm. I must not panic and lose control. For her, I must remain strong, and calm. Eventually, I sourced her inhaler, and told her to put her head back, tried to get her on her side. I wanted to assess breathing more closely. Finally, I decided, I needed to do something, I perhaps shouldn’t have done, but it was a risk I had to take. I lifted her head, and told her to open her mouth. I slipped the inhaler between her teeth, and feeling her bite down, I pressed, repeating the same action. It was enough, but only for short term. It helped somewhat. Satisfied with my actions, I replaced the cap, and continued to time and monitor. Things just got worse from then on. When sighted help finally arrived, as said people were travelling to get there, I explained and briefed them on the all day situation, during which, my friend had double vision.

Was this the crash course I’d been needing to force me into my career prospects, to show me what I’ll be dealing with first-hand? It felt like it. Was this the rolerathler-coaster of emotions, I would face every day? Was this, what I’d be doing? Was this what I’d be carrying with me every day, because if so, I’m ready. I went in the ambulance again, for morral support and waited for 5 hours almost, until going home, but I did not want to leave her side. I knew I must though. It was tough, but I coped. As I say in my title, for me, as someone who is totally blind, and has epilepsy, was this my career crash-course for life? If so, have I passed with honours. It was my time where I came into my own. I felt different. I felt useful. I felt like a different person. It was like I was, someone different. But who was I? Is this my calling indeed? It’s definitely neuro for me, but why do I feel so comfortable in the role of caring, or comforting? I’ll leave you all to answer that. Yes, those two days, arguably, were not what I was expecting, but I faced them with courage, and did not lose control throughout.

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My inspiration continues.

While on my journy of being at university, I’ve come across inspirational people, and egar lecturers. All willing to support me, and for that, I’m greatful. I have met people, who’s partners have suffered brain injuries, at the hands of thugs. My respect goes up. I want to learn, to walk in their shoes, to understand them, to understand why they get frustrated, possibly violent, but it is not their fault. They do not know what they’re doing. Do not know sometimes, the difference in right and wrong. It’s us, therefore, who must help them, not arrest them, charge them, lock them up, not restrain them, not shout at them, or call in authorities where families are concerned. the authorities though, should have trained people, who can instead of getting nosy social workers, help them through the emotions they are experiencing. Yes, also, help the younger people as well, as they too, will be affected. I wish to be there for people, every step of the way, fromcoma, to recovery, and through rehabilitation. I wish to be there with them and their families. I want you all to know one thing. In my eyes, you are not disabled, you are able. Your brain is just different. I want to tell you, you are all inspir’ational, brave, and you should never give up. We’re all here to support you. I am thoroughly enjoying my university course, and it is teaching me a lot. “

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emotional times are ahead

Emotional times are ahead, but in order to look at them, we first need to delve into the archives, to evaluate how one has changed over the last few years.

 

It was the penultimate year of highschool, and a student was coming into the small, but plain foyer, to wait for her support worker. This was normally the start of the day, and the usual routine. Currently, she was due to complete two or 3 pieces of coursework, as well as homework, all on her braille note. Over the last year however, her motivation to study, had dropped, self worth lowered, and failure in almost everything, was on the rise. The downward spiral, was just going on and on. If she thought of going to sixth form, to do ALevels, she was wrong. Her potential was there, it just wasn’t shining through. It was like a dim light bulb, that had previously been lit, but now, dull, and blown out. This was due to the confidence being knocked by people, telling her, she would not amount to much, and that she “couldn’t be bothered”” to put any effort into her work at all. Well, she thought, if they’re saying I cannot be bothered, then, I won’t bother. Why bother. If I try, I get told I’m a know it all, and if I don’t? Well, I get told I’m lazy, and cannot be bothered. It’s a catch22. Almost every subject this young, and bright person, wanted to do for GCSE, was taken away from her. All because they deemed it too stressful and because they did not have, as they claimed, the resources.

 

GCSE results day was upon her, and she made the call, knowing the results already, before they were given, would be fail, fail, and, fail. To her surprise, she had scraped a B, in French, but the rest, were all very low passes, and one fail. Not surprising then, she could not go to sixth form. Tears streaming down her face, she knew what was to come. Years probably, of nothing. The local colledge, was her next destination, but even that, was not going to help her, but hold her back. Two years of her life, wasted, by doing office administration courses, during which, she would be sat at her desk, dreaming at the time, of going to conservatoire, to study singing. There was just one problem, she did not have the acquired grades, nor subjects. And so, the journey went on. Off to pointless places, for pointless tuition. Until, the RNCB, in Hereford. While her experience there, would not be a pleasant one, and one during which a life changing event would end up with her being diagnosed with epilepsy, there was a person there, who understood her, right from the first day of lectures. That person, was her first personal tutor.

 

The end of an english lesson, on her first day of lectures; She had been thrown into the middle of term, as she had struggled to get funding to secure her place there. Having to endure fire drills and learn new routes, as well as doing new things for herself, now, there was the test of new food to try, and the fact she was miles from home, at 18 years of age. As her eyes filled with tears, at the end of the lecture, and she tried to control them, she broke, and burst into tears. Noticing this, the lecturer rang through, and immediately another person was on the scene. Introducing themselves, she heard a Liverpool accent, reminding her of home. This made it worse, but better too, as the voice was warm, calming, and a voice, that she knew would understand her. Experiencing a lot of anger for the first time in two years, as well as life changing events, would teach her many lessons, and also teach her something, that would cause her to rethink her career ambition, and question herself..

 

Friends she would make, and friends she would lose, but one would stand by her always, and to this day, they remain in touch. The event that would make her question her career though, was not the diagnosis of epilepsy, but one of an empathetic kind.

 

Morning break, and she hears a girl crying; Slowly, and at a discrete distance, she follows her, and stops. Calling her name, she then asks what is wrong. Finally, she is told. The girl was worried about exam pressures. Buying her a cup of coffee, and chocolate, she sits with the girl for a while, and then was told by the girl, she should think of becoming a psychologist.

 

A year or so later, and she has embarked on an open university degree in psychology with counselling. So far, she is passing with high grades. This unfortunately, was not to last. Level two approached, and she knew this would be hard. Strangely, her motivation for study this year, was low, and ability to process the questions being asked of her, low as well. Why was this? Feeling isolated, and struggling, she cried herself to sleep at night, worrying over her assignment grades, burying herself in the bed covers, and sobbing uncontrollably, when given the blow, that it was a fail. Feeling ashamed of herself, and that she’d let people, including herself down, she was ready for giving up.

 

But could there possibly be a turning point, another rescuer to pluck her from this stormy sea? Browsing online, she searched for degrees in neuropsychology, her new ambition, and found one, at the University of Central Lancashire. This, was where she was destined. All she had to do now, was apply, hope, then apply for a grant. At least, that’s what she thought.

It was not that easy.

 

Finally, after receiving an unconditional offer of acceptance, she applied for a grant, but was refused, on the grounds she had studied at the same level previously. In that case, there was only one thing for it, fighting for it herself. That was what she did, and now, has succeeded.

 

Having gone through the above story. You would now ask yourself, have things changed? The answer, yes. Things have changed for me, in that I will knuckle down, and not let things build, until I get stressed. I will ask for help when I need it. Finally, the chance for me to show who I am, has arrived. For you all, I will do this. I hope you will all follow me.

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A whole new experience

Just a few weeks ago, I was facing the horrible prospect, of having to defer my university place, and have to face a year of going to the local colledge, or continuing my journey with the OU, but facing great difficulties. This left me feeling very stressed and on edge. Going to the GP, I was asked, about how I was feeling etc, and we had a long chat, during which I had to face the real but all too present truth, I may have depression. Having told people in the past, they don’t need antidepressents, and to get a grip, now I was facing the same thing, having to take Citalopram, and face my own (what has now been diagnosed as, mild depression) Just when I thought things were at the bottom, I was given a lifeline. This lifeline, enabled me now, to go to Preston, and finally achieve my dream, of becoming a neuropsychologist, eventually. This will be a whole new experience, of meeting new people, sharing halls, huge lecture theatres, with up to 200 people or more, work experience in a place I really want to do work experience in, reading EEG scans, via tactile technology, having access to a huge variety of experts in their field, along with assistants for statistics. All I can say, is thank you so much, to the University of Central Lancashire, for bending over backwards, to help me, and I really want to show my gratitude. I cannot wait for the experience that lies ahead of me. Yes, I am nervous, but most of all, I’m excited. There will be emotions, when I say my final goodbyes, but this time, I know I will have the support, and motivation, to study hard, and pass everything. I feel last year, I’d lost my motivation for study, even though it was something I enjoyed, but having to put on a strong front for people, even though inside, i was struggling, was difficult. I would be stressed over assignments, the tutor sometimes was not very explanatory on their explanations, I felt isolated, as it was distance learning. I would sometimes cry myself to sleep over them, and yes, you may wonder why I’m writing this up here, but I am not afraid too. We as a society, must talk, and not hide away from our challenges, or mental health struggles. We’re all not imune. I was totally unaware that what I was going through, was mild depression. Now, having been on the Citalopram for a few weeks, I can honestly say, I feel a whole lot better, and want to embrace this next chapter of my studies, with positivity, and take everything in. I will not struggle, and refuse to ask for help. I will ask for help, as help at UCLan, will always be given to me, if I ask for it, depending on the circumstances, and if deemed appropriate. I hope you have all enjoyed this blog post, and have seen a sense of honesty from me. A side I’ve not really shown here. I felt however, it needed to be shared. As I feel too many people are alone, and need to speak out. If you’re struggling with studies, do not keep struggling, ask immediately for help and advice. Stressing makes you worse, and more likely not to pass your assignments. We can all pass. We’ve got this! We will do it, together. We can do it, together. We will graduate, together.

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Conflicting advice.

Previously, we begun to see on this blog, my aspirations, to become a neuropsychologist, from learning about the brain via my own neurological condition, epilepsy, and learning it the hard way, as well as reading books by the Late Oliver Sacks, listening to documentaries, that would undoubtedly keep me absorbed for hours, feeling moddels of the brain, the giri and sulci that are visble on the moddels too, known to you or I, in English, as (gruves, and folds) Then the more complex conditions, excited my interests, Traumatic Brain Injuries, Acquired Brain injuries, autism, Parkinsons', Savant syndrome, (a condition where those affected, usually have autism, and profound cognitive impairements, as well as blindness, or hearing impairements) encephalitis, and the conditions in that group, etc, as well as esencial tremor, and MS. MND was also in my list of interests, as well as cerebral palsey. What, you may ask, was the conflicting advice? Well, I have been asked, on a number of occations, are you sure you want to take this 12 year journey? Do you not want to think lower in terms of aims? I have been asked this by professionals. My answer, a categorical never. Yes, that may sound stubborn, but if one person, in the psychological profession, gets into neuropsychology, and indeed, herself has a disability, (that word I can't stand using) I will get there. I feel, in my opinion, one with such challenges, as blindness, and epilepsy, though controlled, will be able to endeavour to understand the people walking through the doors, as well as try to answer parents'/carers' questions, if necessary. From the point of view, of someone with that challenge. Yes, there is the ethical boundary, of telling them you yourself, have epilepsy, or are blind, but in some ways, it may make them more at ease, because they may think, "Ah, she may understand. She will not study me, always watch me, through eyes that judge always on the outside, never able to look in. Never able to understand, because they do not have it. They do not deal with it. They, therefore, cannot walk in my shoes, where she however, can." I believe that to be the case. I hope eventually, to work at the likes of the Walton centre, Headway, or the Priory,, even develop a similar centre like Headway on the Iom, as I feel it needs it. Yes, you have stroke nurses, and all the neurological nurses, bar epilepsy, but we need something in one building, with one speciality, under one roof, that can help everyone with neurological conditions, with a team of appropriate people. There is already one neuropsychologist for the nhs, but why not another, for such an ambitious plan as this, when I get qualified. Who knows, as I ask in a title of one of my other posts. What indeed, does the future hold? That is yet, to be discovered. Yet to be told.

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So this is Preston?

The day I'd been waiting for, for a long time. My information visit to UCLan. Getting our flight at the airport on the isle of Man, we set off, to Manchester. The flight was smooth, calm. Landing, we went straight for the first of 2 trains, one to the central station in Manchester, and the next, to Preston. Coming out onto the concourse of the central station with my support worker, I held her arm. People were moving cases, talking, trains going bye. Security announcements. Finally, we arrived in Preston.

In contrast, that station, was a friendly smaller station, with only 6 platforms from what I remember. The city though, was something I'd never experienced, and was about to get a crash course, in city scapes of England.

Preston, class 101. Lunch time, and the streets were already busy with trafic. No let-up, a constant rumble. Crossings, that did not have audible indicators, but only revolving cones. You also had a lottery as to whether the cones worked or not, or even if the trafic stopped in your favour. Trusting a sighted guide, was a must. The streets were wide, sometimes cobled, with shops, cosmopolitan restaurants, Thai, Chinese, Indian, Carabean, Italian, Portuguese etc. There were the posh bistros too.

Preston; Class 102. Night, and early evening.

The constant rumble with trafic was still there. Even by 10 pm, the trafic, still rumbled on.

Now for the university: The staff as well as the tutors, and accommodation management. I just hope I get there.

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