On Monday I gave a workshop to the first year students studying Social work in Southampton about my journey and the need for practitioners to listen in communication NOT just reply. And on my way home I started thinking about how this is relevant in the charity & not-for-profit sector when running an effective campaign or trying to make an impact on a scale. So I thought it would be good to jot down my 5 top tips on campaigning and advocacy. All of which I am still developing myself, but that's the beauty in them. TIP 1: PURPOSE. YOUR WHY... Is the single most important thing. It is the liquid gold, the thing you need to cherish and shout about in everything you do! Simon Sinek in Start With Why discusses how leadership can only be effective when you know you're 'why', the thing that made you get up out of bed and start trying. In running an effective campaign, this should be the thing you live and breath. Without purpose, a campaign can appear lost and it can be hard for your audience to feel engaged. This is not something you should think about, and it needs to be a constant point of reference, in any campaign. for your audience to inspired to take action, you need to tell a story; it needs to be something which motivates them to be involved and understand why the campaign exists in the first place. It is also important that you remain consistent in your message and the actions you take to share it otherwise difficult for anyone looking in to feel your passion, and fully understand what you are saying. TIP 2: CLEAR COMMUNICATION IS KEY. communication is constant from texting your mate to having a conversation with someone who you have never met before. What you communicate and how it is conveyed needs to be clear and easily accessible to a wide range of people. From a poster to a million-pound advert like those done around Christmas to encourage you and me to go and buy our goods from places like Marks & Spencer's or Tesco, it is their message is clear, concise and often a call to action or simple instruction. Looking back at the past few years, with the rise of social media platforms putting emphasis on a community can really help to reach a larger group of people, across the globe. The 'Ice Bucket challenge' was able to engage with a varied demographic of people making it inclusive and clear in its message of raising money and awareness for an underfunded and known illness. What I am trying to say is that how you communicate your message, you're why doesn't always need a huge amount of money behind it. Since starting my IFightFor CIC I have experimented with different styles of communicating our purpose as an organisation. Some with success others with little. That is because as I have come to know all too well, not all methods of communication will work for every organisation on every platform. But that is not to say you should not try. This brings me swiftly onto my next tip... TIP 3: BE ADAPTABLE. When an organisation stops adapting or afraid of change, like people it becomes hard to get out of routine. This is the same as a campaign structure! If an element of what you are doing works well, utilize it but never become afraid of trying new techniques. Nothing is ever one-sided and things will always go wrong. Or appear this way at first glace. But that is okay, even the greatest marketing strategies run encounter challenges. Developing ideas is something I love doing, I must have hundreds of notes in my iPhone which I have tried to deliver on and as soon as something goes wrong or engagement on social media has been low over a number of days, I have stopped trying or would give up... When I so wish I hadn't. I admit this because I think its important, especially in the charity sector. Because learning and adapting to the challenges means we know what to do and not to try next time. TIP 4: BE OPEN TO FAILURE. I hate failing. Well, at least I did growing up, in part because I thought it would give ammunition to those who put the fear of doubt in my mind. However, failure or the process of getting things wrong when creating a campaign is the most beautiful part, in my opinion. Because when you stop learning and trying to understand the process. It can prevent you from actually making an impact. When I started writing grant applications and got rejection after rejection I thought it was me and even now I find myself wondering at times 'what if it fails', but after you learn that a failure is an event, not a person it gives light to the opportunities and experiences you gain that inform your practice. . TIP 5: BE BOLD (THINK OUTSIDE THE BOX).
If you have an idea that you think might not work I encourage you to try it and be bold in trying things that people haven't yet tried. Just because they haven't it does not mean you can't. Campaigning effectively comes down to the simple idea, in which you believe you can make a difference big or small. Being bold and creative in your strategy may lead to people questioning what you are actually trying to do. However, words, ideas can make a massive impact and sometimes the unconventional ones have the most success. Just look at the Computer, iPhone, Google, Microsoft all of which came from people being bold and creative with ideas and trying to change the world with an unconventional approach. These tips are things which I have learnt and explored a lot recently and still developing. But that is a good thing and If you take anything away from this post I hope it is simply to try, fail and keep going.
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So I'm currently writing a book and wanted to share a small section of it to see what people think.
So here goes... The idea of dying is one which even from childhood has scared me. As a kid I would panic even at the pure mention of the word. More often than I care to think about I find myself experiencing sleepless nights in the lead up to any MRI or significant hospital appointment with my consultant because I was anxious of what they may or may not say. The month before any trip to Southampton Hospital was mental torture, as I tried to decode and process logical arguments around, why I was having such frequent check ups. I would resort to washing my hands more frequently and carrying out other compulsions I’d used as an escape from my anxiety and OCD. On every single occasion I would go round in a circle, finding some relief in washing my hands, well at least for a minute or two then I’d be back in front of the bathroom sink often to the point I made my hands were raw or bleeding. When I started experiencing higher levels of anxiety my mental health took the wheel, it took control. In a lot of ways this is still the case today when I can sometimes find myself going round and round trying to manage my OCD and the demands of life. During the winter of 2010 my view of death changed, no longer was I ‘scared’ of the prospect of dying, rather I began convincing myself that if I wasn’t around anymore, things would be better. I had made myself believe that ending the pain not only would not only get rid the fear, worry and depression I was enduring. But, I also felt, it would take the stress away from my family and friends who I at the time felt like a burden too. For a long time, I’d go to the beach, sit near to the sea and just feel numb, as I tried to forget everything I was feeling. A coping mechanism I’d find myself seeking comfort in at my lowest. It was the lead up to Christmas and something had happened at home during the time my parents began separating. After being given some news from my father I ran out of the house, unaware of where I was going, unaware if I would go home. At that moment the only thoughts going through my mind were “why me?” and “should I?”, should I go through with all the thoughts of suicide running in and out of my head at the time. Not long after running from the house, I found myself back at the beach going through every eventuality in my mind. Exhausted from the worry and fear of what people saw when they looked at me I had a fixed mindset on the fact my life had no purpose. My heart rate at this time had no consistency, my mind was a wandering maze of thoughts, emotion. After a few hours of ignoring texts and phone calls from my mum and me wondering around in a state of panic and confusion I received a message from a friend who I’d known since childhood and who was someone I consider family simply asking if I was okay. Up until that point I felt like the fears and worry about life I was experiencing meant I was alone. When you are in that moment of what feels like isolation from the world, because your view of everything around you is clouded by a thick blanket of mist. It feels like everything is distorted, blurred and flipped as a good day and turn into a bad day the second your eyes open and the sun rises and makes itself known through a gap in the curtains. Even to this day I can find myself waking up and thinking about the bad times and often forget the good in everything. When I can feel it’s gonna be a day dedicated to my anxiety and OCD each little movement, every step I take feels like a marathon. And as I find myself washing my hands for the tenth time that day the logical voice in my head says it’s okay and I’m worrying over nothing, but then it feels like my body is in auto drive as I wash my hands again and again or I carry out one of my many other compulsions. Which for those who live day to day with the effects of OCD can find taking up a large proportion of their life. Some days are better than others and if I can find release in being active or outside of the house I’m usually less likely to seek reassurance in my compulsions. However, this isn’t always the case, because on some days I get to about 1 pm and I just need a nap so that my mind and body have time to rest after hours of the same repetitive actions. I heard someone say once that depression is the most inclusive club in the world. No waiting lists or qualifications to join, however, leaving is another story. See, we all have mental health but sometimes without warning, we can enter into a situation where we can't cope solely on our own to manage the challenges and strains our mental health put in front of us. This is something that as humans we can find unnatural to talk about and open up to those around us. I know from my personal experience, I talk a lot about how I'm feeling but even to this day if I get asked: ”how are you feeling?” I'll reply with ”I’m fine” even when I'm not. Because it's often easier to say nothing is wrong than try to explain why I'm struggling to manage my anxiety. Although I still have bad days, I try to not let them have as much of an effect as they used to! This isn't easy, and every day I have to remind myself that life is a marathon, not a sprint and just to take life as it comes. Please let me know what you think. I am grateful to any feedback or comments. Chandy The role of a Doctor is to cure or treat someone who is facing illness. But as I experienced growing up, the role of a doctor in most circumstances forgets one important thing... You can live well despite, having a disability of lifelong health concern, if given the right support to do so.
During my time in and out of Hospital, there have been moments when it felt like the Doctors, whose role it is to help have been so focused on 'curing' they forget the person in front of them, who have put their lives in the hands of their consultant. Laying in the ward as you see the Team of Doctors and healthcare professionals move from patient to patient. The focus can appear distant from the person laying in the hospital bed. As a kid, you have no idea, or at least I didn't know what was going on, when they stand at the end of your hospital bed discussing your care. Even to this day, I look to my mum when my consultants say something which confuses or panics me. Because, in the hospital environment, the clinical appearance of everything can make you feel lost and the beauty of the world around you can seem hidden. As humans, we get locked in the position that when someone is disabled we should be sorry for them, rather than empower them. We forget that life is complex, we forget that each of our lives is so interlinked that we can have a huge influence on others lives. And, so empowerment and the support we offer others with and without a disability or fighting chronic illness should be tailored and focused. It should be focused on showing them that their life is so amazing they can achieve ANYTHING. When I was younger my mum would in the moments when I felt like I couldn't do something would encourage me and gently remind me that I could. And when those in the medical profession, when those who made comment in passing or those in social care profession said I would not get to be 'successful', because of the preconceived ideas of disability. My mum would empower me and be the backing I needed to see that although it was important to get the right treatment, I could still live well with my condition and achieve anything. Last week I gave a talk at Southampton Solent University to some of the Social work students, about working with young people and shared my personal experiences. The biggest thing that stood out for me as I was sat on the train on my way home was, that working with young people does not have to be complex. It just involves being open, honest and understanding. By that I mean we so often listen to others to reply, to give a quick response of what we think that person needs. We don't listen to understand them as a person. That is key to any supporting anyone. 5. THE MRI. There is nothing I find more terrifying than laying down with my head locked in position while large magnets circulate around my head for 30 minutes. Last Wednesday I found myself in this exact situation - while I underwent another MRI scan to ensure that Timmy is not doing anything unusual. As I placed my head back into the bed, they put a frame in place to secure my head while the scan took place. As they leave the room my heart rate pounding I could feel myself closing in on itself. Seconds later you the feeling of the bed moving into position brings me into a locked position with a small mirror above to look straight ahead of me. Which does not help, as every time you look up you can see the radiographer's talking to one another and point at various monitor screens. Meanwhile I am laying there listening to the mixed sound of Heat Radio and magnets rotating round my head at speed. Every few minutes the music goes silent and the Radiographer asks, "Are you okay, Chandos?"... Voice full of fear I respond yes. Despite having an MRI every year or two the fear and panic in the lead up to an MRI and the anxiety waiting for results never gets easier. 4. MEDICAL TERMONOLOGY. Growing up and still to this day I get confused by the medical terms things doctors use when talking to me about my tumour and the symptoms I am experiencing. On several occasions I’ve found myself going ‘what’ in my head and panicking that what they are saying is bad, even though they have said it’s fine. And more than often I will go home and Google what they have said…. Now Google is good for some things it is not as useful as you think when you have any medical diagnosis, because you end up feeling more anxious. Over the years I have had several good consultants who’ve done everything they can to support my understanding of my diagnosis and treatment. I found this especially useful during my last operation in 2014 when I was a lot older than my initial diagnosis. Saying this, I’ve also had many consultants who have had little to know understanding of my fear and I have left the hospital feeling worse than I did before. 3. ANXIETY. Anxiety is still a big player in my life and I deal daily with my OCD and day to day worries about getting ill, but some days are better than others. I remember after I got my diagnosis in 2014 my anxiety got increasingly worse and with the lead up to my MRI last week and getting the results back my I’ve found a lot of my old worries come back and my sleep pattern is all over the place now. Anxiety is something I will probably live with forever, but these are my tips for dealing with it… 1) Go for a walk - I find taking an hour out my day to go for a walk while I listen to Spotify on full volume helps me. 2) meditation – at first, I found it useless and did not think it would work but after a while it’s really starting to show purpose in my life. I use an app called Head space and try to take 10 minutes out of my day where I can to meditate and reflect on that day. 3) Every week taking 5 minutes to write down 3 good things that have happened that week really helps as it reminds me of the good things rather than dwelling on the stress and anxiety of life with a brain tumour. 2. HONESTY IS THE BEST POLICY. Being honest with yourself about your own limitations, worries, fears and strengths is the best thing you can do. For ages I found it hard to deal with the fact that my tumour had returned after a 12-year period of not doing anything. But following my operation while I was at university I realised that it’s okay to not be perfect and to not know what tomorrow will bring. I will always remember what happened when I had my last brain operation and the Surgeon asked me if I had any questions and I straight up asked ‘Am I going to die?’ I think this took him by shock a little because I could see the change in his facial expression, but calm and collected he responded with pure honesty saying that the operation had risks but that he would do his best for a successful outcome. I think it’s moments like this that remind me that life is not black or white and having my consultant stand there and be honest about the current situation gave me hope that things would be okay. Although I didn’t know how the operation would plan out at the time part of me going into that operating theatre new it would be fine. 1. LIFE IS NOT SIMPLE Nothing appears to be simple, I wish it was sometimes and in previous blog posts I have said that I have struggled to come to terms with my disability and diagnosis and wished I could wake up and be ‘normal’. But, over the past year I have found out so much about myself and by using my experiences of having a brain tumour I hope to bring others together and help fund a cure. Plus, I have some of the most amazing friends and family who over the past few months have proved to me again that together we can make a difference. In late November with the help of some signed celebrity merchandise and donations – plus a live performance in the iconic Cereal Killer Café in Camden Market we raised over £400 for The Brain Tumour Charity. Money which can help to fund research, support services and much more. Dear Mr Hammond,
I write to you as a concern member of the British public and as a young adult with physical and learning disabilities. Earlier this week in evidence you gave to the Commons Treasury Select Committee on the 2017 budget. During this time, you suggested that low productivity measurements may have been influenced by the increase in disabled people, who are in work. Although you appeared to applaud the fact that more people with disabilities ae in work. From an outward perspective of someone who has tried to find a full-time job whilst living with a disability, the comments you made reinforce the perspective that having a disability makes you a ‘burden on society’. As a recent graduate with a degree in Social work, I have witnessed first-hand the difficulties in finding a full time job, and have since decided to create my own job as I have been unsuccessful in finding a job that can be adapted to fit my physical limitations. Through speaking with people at university, my friends and those I have met through volunteering in the community - disabled people should be recognised as should anyone as hardworking, determined and passionate. Having a disability can be difficult and as each day passes I face daily doubts of being good enough. The reality of finding work can be difficult for anyone as I am sure you know. However, this pressure can be even greater for those with a disability. Those living with physical disabilities and learning difficulties may feel pressured into finding a job when their benefits may have seen drastic changes and the strain of his/her condition on daily life can contribute to how they themselves manage with the real-life experiences of having a medical condition. Despite this I know many young people and adults who regardless of their condition go to work each day giving everything they can as do the rest of society. I am aware that with Brexit and the current financial crisis, there are tensions among resources. However, I would ask that you reflect on the comments you made and listen to the people that would have been directly affected by these words. Having a disability does not have an on and off switch and after leaving work. Regardless, people still actively seek work and go above and beyond the expectations of those around them. Disabled people should in no circumstance be marginalised as the reason for a country’s economic growth. Investment is needed to support those with disabilities both in and out of work. The Joseph Rowntree Foundation reported this week that nearly a third of disabled people live in poverty. It is important to recognise that every human being has a direct influence on another and in the words of Robin Williams from the film Patch Adams “you treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome”. I thank you for your time and look forward to hearing from you. Kind regards, Chandos After being diagnosed with a brain tumour as a child, I always knew I wanted to help people and fundraise for a common goal. As a young adult and recent graduate, I still feel the same way. That is why on Monday 27th November from 8pm to 10pm I will be holding a fundraising event for The Brain Tumour Charity at the iconic Cereal Killer Café in Camden Market. Today brain tumours remain the biggest cancer killer of those under 40. A harsh reality that affects hundreds each year. We now live in a world with modern technologies and developments in research being achieved every day, yet so many young people and adults suffer and live with the severe impact of having a brain tumour, whilst also dealing with side-effects and other health conditions. When I received my diagnosis as a child, I would not have thought I could have achieved half the things I have done. I mean not every day is easy, and sometimes it can feel like I take two steps back for every step forward - but, in all honestly, it’s the work of the Brain Tumour Charity that means people can receive a diagnosis quicker, get better support and overcome barriers easier. However, this won’t happen overnight; not without your help. That is why we need to continue fundraising and working together to fight brain tumours. Right this second, life expectancy of those with a brain tumour is on average 20 years less than someone without – the highest of any cancer. That is why fundraising for The Brain Tumour Charity is so important. They predict that at least 102,000 children and adults are living with a brain tumour in the UK today. It means that almost 11,000 people are diagnosed each year with a primary brain tumour, this figure includes around 500 children and young people. My event will consist of live music from up and coming performers, who have recently take the leap into following their passion for music. There will also be a raffle with the opportunity to win signed photos from celebrities such as Toff from Made in Chelsea and Karl Pilkington from An Idiot Abroad. Other raffle prize donations include two adult weekend tickets to Bournemouth 7s – the world’s largest sport and music festival. The event has also been sponsored by Drink Zeo, who have donated a range of drinks for each guest who attends. All this while you enjoy a cereal cocktail! So, if that’s not enough I don’t know what is! Tickets are priced from £24 - which includes a donation to the charity, after event costs have been accounted for. If this seems like your type of event, then please visit the link below to find out more and buy your ticket today! With your help we can defeat brain tumours. Thank-you. Tickets are available to purchase here - https://www.eventbrite.co.uk/e/a-night-in-november-tickets-36498355564 Statistics taken from - https://www.thebraintumourcharity.org/get-involved/why-we-need-your-support/the-statistics-about-brain-tumours/ Dear 10-year-old me, I want you to know it gets better. Some days are tough, some days will bring you to tears. But, I want you to know you are going to be okay. You are still going to face doubts and fears and a huge amount of anxiety, but you get to university and get a degree. It won't be in graphic design like you thought, rather social work. Along the way you'll encounter the struggle of getting another diagnosis of your tumour. A lot of the time between diagnosis and coming out of hospital will remain a blur, but you will get through it!
So, after 4 long years I am finally coming to the end of my undergraduate’s degree!! It has in a lot of ways been a roller-coaster of emotions, challenge and personal development. Over the last few months I have been asked what I have planned for when I finish uni, and if for someone who likes to have a plan and is always panicking about what is to come. For the first time about two weeks ago after joking and saying, 'no idea' to a friend after he asked what are you r plans for after uni, I second guessed myself. Throughout my degree I have been taught to think, taught to learn from experiences and taught to be me. So, we have all been there as a kid in school facing the question from a teacher 'what do you want to be when you grow up?'. And for a long time, I wanted to build equipment and design innovative technology. It was not until I visited Ethiopia for the first time and I saw people living with so little consumption for cosmetic goods, but in the same context a life of joy, that I knew I wanted to help others and experience the same joy they were. In life we forget the joy, happiness and fulfilment that come from the experiences we are exposed to each day! Which I think can be summed up by John a student who when asked by his teacher in an assignment about the future, he said when I grow up I want to be ‘happy’! the teacher approached the student and said I think you misunderstood the assignment, John responded with ‘Miss I think you misunderstood life’. I think this is a beautiful thing shows how our idea of life and progression. If you Google search the definition of Success it is defined as: 1. The accomplishment of an aim or purpose. Which as a young person and kid I thought accomplishment was defined by what other people though I could be and what they believed I would achieve. Going into my GCSE’s I was predicted E’s and F’s in all subject’s I was told I wouldn’t finish school. And it wasn’t until I took a step back and saw my life as my own that I challenged the stereotypes and views of my ability become truth. By the end of year 11 I left with 9 C’s a B and a D, and you know what I’m happy to say every step forward is just more motivation to keep trying. My mum taught me that there is no such thing as ‘I can’t’. And yes, writing essays and my dissertation has challenged me beyond my belief but I can honestly say I’ve done it and as long as I’m awake, breathing able to find motivation I will try. I have always seen failure and getting things wrong as bad. But to say you haven’t failed or got things wrong means you haven really tried anything new beyond what people believe you are capable of. Every time I feel like quitting or feel like giving up; which was worse as I was growing up because I felt the gate to success, closing more and more each time I tried. This has been prevalent in my life over the past month as I’ve tried to find work for myself as each time I sent off a job application, it led to another rejection. And I will admit the other day I wondered if I was capable and talented enough to get a job. So, I have taken it upon myself to create a job, create my own journey and that’s where I need your help!! The other day I said I was going to walk around the coastline of the UK. Well…. This was until I saw it would take 10 months! Rather I have decided to walk from Lands’ end to John O’Groats which take cyclists around 10-14 days and a current record of someone running it in 9 days. I have set myself the challenge of doing it in 20-25 days. Why have I done this? Well when I say it people have laughed and being the stupid person I am once I have an idea in my head for a challenge that inflicts pain on myself; for some reason, I feel the need to challenge every bit of strength I do have. I am still not sure why I said I would do it! I regret the decision but I am a man of my word and will not give up until it I have completed it. The purpose for completing this challenge is to help raise £500,000 so that my organisation IFightFor CIC can help young people across the UK through social action projects. Rather than get a job I want to create my own job for the benefit of others. In life, I have learnt you should do what you love or love what you do. Doing a social work degree my aim has always been to help other people and having come to the final stages of graduating and completing my degree, I have decided that the best way for me to fulfil this is too be led by you! This is why I am asking your help to donate, if you can and share this post. We all know that the UK right now is unsure of what will happen, what the outcome of brexit will be and who what will be the election result. That is why I want YOU to be a part of IFightFor’s journey& mine as I travel the length of the UK. Steve Jobs said 'remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart'. So moving forward as I look to create a my journey I ask you come with me. I have created a crowd funding page and ask that you share this link and donate if you can. (Link will follow in due course). Thank you to everyone who said I couldn’t I say watch me dream. To everyone who said my dream was silly or stupid, I say watch me take action. When I was a kid, you said I would not, so I did. I am at a place in my life where I am finally happy. Thanks to you, I achieved those dreams you said where stupid. Thanks to you, I might be a little broken, a little mad but I am happy being me! Thanks to you, I am at a point in my life where, I do not know what tomorrow will bring but that is why I keep going. You can laugh, you can stare but while you do, I am going to carry on doing me. This week a policy head at Number 10 made a controversial statement that disability payments should go to the "really disabled" and not those with Anxiety. As someone with both a physical disability and mental health problems; my journey to get access to support has been filled with numerous consultations, appointments and meetings. All of which to help decide my diagnosis and treatment options. Obviously it is important to consider that medicine and the medical model to disability; which looks at curing and treating a person. But in my personal opinion mental health issues and the process of diagnosis someone with things such as anxiety and Obsessive Compulsive Disorder (OCD), are something that although can be improved through the use of medication. But we should consider more holistic routes and not shy away from making mental health a public issue; as it becomes more prominent in society and not be afraid to talk about both Physical disabilities , mental health issues and how they impair and impact upon an individual. Going in and out of hospital's you get to meet many doctors, nurses and health professionals; some have been fantastic and supportive of my diagnosis of OCD and related anxiety, which can result in my becoming fixated on the worry that I will get ill and as a child that those around me may get ill from my actions. Alongside this I would have different rituals depending on that moment in time, such as washing my hands to the point skin breaks, eating things a particular way and seeking reassurance from my mum... which is still a big part of my life and cannot be without my phone in case I have to contact my mum; because I have become worried. This is normally worse when my physical health is worse or I am about to have a check up at the hospital. MRI's are normally the worse and for a good few weeks if not month before I am texting my mum for reassurance. I remember as a teenager there was a couple of months where my mental health was becoming increasingly bad and reached a point where I had thought about ending my life and would go on long walks just to be outside and away from everything. I would go and sit on the beach for hours on end. I will admit that some days are better than others and its important to try think less about tomorrow and what it will bring and rather see yourself on in the here and now. Which is a task in itself, I know; I have tried mindfulness and countless other talking therapies and treatments. All of which work and help me in different ways. But that is the beautiful thing about life and what the social model of disability argues. With this way of thinking in mind; it seeks to look at the person as individual and the world around them as an influence and barriers to their life. To talk about disability effectively you need both, but we cannot forget about the later and give our primary focus to just curing and treating a person. By saying that disability payments should only go those with 'real disabilities'; we are crossing a fine line in what it means to be disabled. The Oxford dictionary defines disability as: 1 A physical or mental condition that limits a person's movements, senses, or activities. Therefore, we should value each person as a person. In the words of Patch Adams " You treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win, no matter the outcome". Now, this applies to both physical and mental health illness and should be the same in how people are seen as when being assessed as disabled. In the past I have been told by medical professionals that I should just get on with it and my anxieties didn't matter. I fully acknowledge that mental heath problems can be hard to fully understand and support. But in a word where communication is easier than ever; we should be talking to people about the impact of their condition on them and look to support them. Yes, the media argue that a large number of people take advantage of this service the government offers. And I do not know the facts on but I would argue that you cannot marginalise and cut the majority of people's benefits because of some people reportedly misusing services and access to Personal Independent Payment's and other related benefits. That is not a health way to move forward and help people with disabilities and more thought needs to be given to disability and how it effects each person as no blanket term or treatment can be given to all disabled people, living with physical or mental health conditions. Every day is a struggle and sometimes waking up in the morning I can normally tell if it's going to be a good or a bad day with about 10 seconds. Normally if I haven't slept well I know ill go back to my bathroom sink at least 3/4 times to wash my hands and will check food before eating my breakfast. But luckily I have some amazing and open friends and family, who I feel I can open up to about my mental health illness and I know t wont be easy but my diagnosis of has led me to take a huge step and live independently away from my mum and study at university and know that yes ill have days when I want to do nothing but stay inside and other days when I was to get outside; but the reality is that mental health is a real thing and we are moving forward to better treatments for a huge variety of conditions of the mind, but we need to remember that mental health illness is, that an illness not a weakness. Love, Chandy :) If you would like more information and support for your own mental health please visit Mind The Mental Health Charity. There website is great and offers a range of advice , tools and guidance. 2016 a year in which the UK decided to leave the EU, trump was elected as the next US president and seemed like a lot has been going wrong in the world. From the outside in this might look like the case but about 3 weeks ago, I was laying in hospital, spherically in an MRI scanner; my head stuck in a tight fitted frame, headphones on and Capital FM on trying to black out the noise. My attention drifted between the tiny mirror placed above me so I could look out at the room and the image of the sky placed on the celling. Now 's are not my favourite thing in the world and all I wanted was to be sat in the Subway shop eating a bacon lettuce and tomato sub, but unfortunately I would have to wait. For a few minutes, I began thinking about a YouTube vide I had seen a few days earlier by Jay Shetty who lived as a monk for a few years and now creates videos and interviews with various writers, activists and campaigners. Laying there in a state of anxiety I just wanted to take my focus away from that present moment and that is where the video came in handy; in the YouTube clip Jay spoke about the future and planning and odd thing to come to mind when most of the time im focused on Dominos and worrying about five minutes ahead of me, but oddly I remembered a him talking about finding strength in difficulty. His number one rule is to say it's okay to feel the way we do, want to cry and be experiencing the emotions you are in and how this secondly, links to history and looking to the past of people who have made change or influenced the future. He goes on to talk about the fact that any challenges we face today, we have as a collective have faced the same if not worse challenges. Quoting Martin Luther King Jr. Jay Say “Power without love is reckless and abusive, and love without power is sentimental and anaemic. Power at its best is love implementing the demands of justice, and justice at its best is power correcting everything that stands against love.” 2016 like any year has had it controversy, it’s highs and lows; today alone I woke up to notification from the news of war in the East updates on twitter of trump and his presidential plans for his time in office and yes, the world and changes we currently see happening scare me, like a lot of things in my life (I worry a lot) as most of my friends will know. And I know when people talk about the solution to ending war, love and peace are always mentioned but never shown any deeper understanding or practice in day to day activity. It was also Martin Luther King Jr. who said “Those who love peace must learn to organize as effectively as those who love war.” … wow, you can really tell I like a good quote!
Doubt has been a massive influence in my life over the course of 2016, am I good enough to graduate in however many months it is, seems to be my go to question when I wake up in the morning and look over to my phone and check my social media feeds. Something I have been trying to do less as I have found that I spend more time on my phone, than I do exploring the world around that tiny little screen of my iPhone. You know it’s crazy when I went on holiday earlier this year I think I tried to capture as much as I could on my Instagram than I did just taking in the surroundings. Since then I have tried, but often failed to achieve this; but if I am honest I like being able to connect with the other side of the world from my phone but im starting to realise that time is fast and I spend so much time worrying that I might not make it a week into the future because of my fear of becoming ill, but I will also spend a good 45 minutes scrolling through my Twitter and watching videos of people exploring the world in places I would give anything to go to. So my challenge for 2017 is to firstly get a 1st in my dissertation and secondly spend each minute thinking of new ways to enhance myself be that booking a holiday, not going on my phone for a day, because I have noticed this year that although I couldn’t live without being connected to the world because I am always trying to create a new campaign to inspire young people or connect the story of IFightFor to others, sometimes it takes taking a step back and acknowledging the bigger picture to see what right there. 6 years ago, I would never have thought I could or would want to be where I am now, I remember being at home and being told something that I would never of thought would happen. But it did and all I remember is running and running to the beach near my house and just wanting to SHOUT, SCREAM and give up because nothing seemed achievable. Being totally honest this is a challenge I have faced a lot, since Christmas 2010; but at the same time a lot of awesome stuff has happened I was inspired and supported to create the IFightFor organisation and brand. Which this year has seen growth in investment and projects it runs for young people in West Sussex. We got our first celebrity ambassador and joined forces with Andover New Street Football club and raise over £600 to fund future development as a community based company. There is a guy called Zach Sobiech who when living with terminal cancer said you don’t have to be told you are dying to start living. Although 2016 has been one of those years with pain, uncertainty and outcomes we would never have predicted, 2017 is only a few days away and is another 365 chance to make a difference, met and connect with people and challenge perceptions, ideas and eat a lot more Subway and Dominos! (had to get that in). Finding yourself shouting scenes from Cool Running's is not what I thought I'd be doing in the middle of the high-street at 11pm.
Ask yourself what would be different. Taking the time to reflect is something im sure you and I have all done but, have you really stopped to think why. That little moment in which you think about your purpose, your meaning in life. In Dead Poets Society Robin Williams character says;
Once I overcame my fears of failing another essay; I found out I had managed to passed my resit, and pass all of my other assignments including a 67 in my Disability module; which at first I questioned How Id done that! When I was waiting for my results I found myself watching old films and motivational speech's to get me to the point where I felt just a little bit of confidence. I found myself watching 'Jack' with Robin Williams ( clip below); When I watched the video as a kid I never really understood the message being conveyed. However sitting in my room at uni it hit me; we all are given a life, where we try to forget what may have gone wrong or the opportunities we missed due to fear clouding the path ahead sometimes over anything else. But listening to Robin Williams character, it becomes clear that each of us has greatness and a chance to fill life with amazing stories that we can leave in history. A year on I may still have a brain tumour contained by my barriers, my disability but as I read somewhere...
'Don't tell me the Sky's the limit when there are footprints on the moon' . Thanks for reading. Chandy Life with a brain tumour is definitely not easy! But its one that brings with it pain and joy! everyday is a journey! A few months ago I was given the opportunity to become an ambassador for the Brain Tumour Charity, along with other young people from across the UK to help motivate & encourage change in the fight against Brain tumours! After being in Hospital for the first residential it was amazing to get to meet everyone this, weekend! Hearing everyone's stories was finally a chance after last year to meet people like me and helped me to see im not alone! One of the most important things I learnt in the 2 days at the charity headquarters, was BE YOU. A friend of mine always tells me to 'do me'. Which at first I was like yeah mate I can't do much than do me as I can't be anyone else if you think about it! So whats your point? Looking back, I've done everything but be me, because of my tumour! When I think about it im so scared of my disability and the way it shapes the way people look at me, I often run and don't take the chances I missed. Having two great big scars on the top of your head is not something you would probably ask for. But They are probably one of the defining features of me, although part of me wishes they weren't! Being yourself is hard at the best of times with without the added pressure of anything else I found this quote by the Spanish Athlete Andres Iniesta who said ' Some people like you, some people don't. In the end you just have to be yourself' The reason this quote stood out for me is because ive always tried to be liked by everyone! when in reality trying to get one person who bullied me as a kid, meant I lost my other friends at the time! On the Train the the headquarters on Friday I was scared that people wouldn't like me and that it would be two days of people judging me as we took part in the training sessions! in part because I worry a bit to much. But after about 5 minutes of sitting down it felt liked we had all known each other for years. I'd spoken to everyone on Facebook since we had all been given the role as Brain Tumour Charity young ambassadors but walking in to the office I have never felt so nervous about what a group of people where going to think of me! By that evening when we got back from a meal out we where playing charades and was making a fool of myself. Which I guess is something I do most days. To sum up the time at the headquarters for the charity in one word is extremely difficult but by the end I didn't want to leave and can't wait to get started on developing campaigns and being an ambassador for the charity! Since becoming aware of the Brain Tumour Charity in late 2010. It has opened my eyes to the amount of people facing the the harshness of the condition day in - day out. I was going to put up facts and figures, but id rather just keep it simple with the one key message. Brain Tumours are the biggest cancer killer in the under 40's This is a scary fact! despite this we can reduce it by early diagnosis and intervention. Below is one of the 'Headsmart' cards which you can get through the Charity and Headmsart campaign Website ( links below) Although these are not a way to diagnose yourself, they help as with me last year to detect when something is not really right and it might be worth seeing your GP! Websites Brain Tumour Charity: http://www.thebraintumourcharity.org Headsmart: http://www.headsmart.org.uk/ As a kid I used to dream about being someone like linford christie. I remember the week it was announced that London where holding the 2012 games, going in to school saying Ill be there one day on the track running like my life depended on it! I was always the kid that came last in every sports day and was by no means going to break a world record in the 100 meters. But you know what that didn't matter to me, because I finished! One of the things I have not stopped talking about since I began trying to get a space is the London Marathon. Looking back I can still remember sitting watching hours of the race day and seeing hundreds of people run through the streets of London. Then in the week that followed hearing the stories of those very people and those who where still going days later! I guess from around that time, I made it my goal to one day be one of those people to cross the line running or slowly dragging myself with what energy I had left. I am proud to that on April 26th I will be running for Children with Cancer UK. Although I was lucky to have had a non cancerous brain tumor. There are hundreds of cancers and tumors that effect people each and every day! When looking for a space I wanted to run to support the young people that are effected by cancer each year, because if anyone inspires me its the young people who are fighting the disease every moment of the day! I thought I had gone mad when me and my good friend decided we would run the marathon and still do months later writing this, I know im not going to finish in anytime under 5 hours ( unless I get superpowers between now and then ) But that is not what I want, to get from running the Marathon. I think to even cross the finish is an achievement for anyone I mean 26 miles is a long way! 3 years ago my life was in a very different situation, Non of what has happened has not taken me back, surprised me or knocked me flat on my face on more than one occasion. But sometimes being knocked flat on your face makes you more determined to reach for the sky. After about 30 minutes of running my heart feels like it is punching itself to get out of running. Sometimes the only thing you are thinking about is wow I want to give up. But like anything the reason you started should be the reason why you don't give up! Living with a disability I do constantly think and question my own ability. And looking at the Race map for the marathon my first thoughts where.... How does anyone to run that , especially me? someone who unlike a few years ago would fall over trying to ride a bike for more than 3 minutes. Then I just told myself to shut up, because this is your time to say disability or not you are doing OK and it will all be OK. At uni we have been asked to do an assignment around an aspect of disability, the area im looking at is identity because until I sat down to think, which doesn't happen often. It crossed my mind that when people ask me to say who I am one of the first things I say is im disabled, partly by force of habit. But I also think its to eliminate the elephant in the room and people scared to ask why I have a fair few scars and! part of me wants to say ' yeah I have a brain tumour' but I think as soon as you say that you put it in someones mind oh well he can';t do that and granted at school I was not sporty or the coolest. But as I have only learnt in the last few years is that all we can be is what we have in that moment in time nothing less or more. So my advice to anyone this year is do something you know you can do but maybe others don't and prove them wrong... because as someone said to me its only a regret if you miss the opportunity to do something for you for the view of others. I apologies for my really bad spelling as normal!! but I just want to leave you with this quote I found.... "Unlike a drop of water which loses its identity when it joins the ocean, man does not lose his being in the society in which he lives. Man's life is independent. He is born not for the development of the society alone, but for the development of his self." - B. R. Ambedkar- PEACE & LOVE Chandy On Wednesday I got my MRI results back and was given possibly the best new, I could have asked... they said that although , they can still see a small area on the scan where they operated this could well be scar tissue. Out of all three of my surgeries this has been the most successful... removing the majority of the tumour!! and to top that I got 62% for an essay. Which is the highest grade I have got on an essay ever!! As I write this I am waiting for two further essays which I know I could well fail as based on my grades last year I could well fail! But being knocked down with a fail on an essay just means that this semester I have to work a little more on getting a pass. Anyway back to what I wanted to talk about! I saw a someone speak about life and its mean, purpose and value. So I wanted to write an open letter to express something which I won't give a tittle , as I want to ask you to create your own... and also I couldn't think of one! To whom it may concern...... You can look at life in a variety of ways, each of its own value, meaning and milestone. We spend each day moving, coasting through the good the bad and same old.... why? to search for acceptance. We are the controllers of this 'acceptance' by looking more towards what the things we are not! we move the line of what s okay further and further out of our reach.... and my question is, how is this helpful?.... by moving the goalpost away from the point at which we stand... its making getting there harder than it actually was to begin with. BELIEVE, that by being unique and by having faith in what you can achieve. Be that a small step forward to another's five.... I can cast back to when I thought the hardship and load would get easier just by waiting.... but one thing I can say for sure is that it wont unless you, have belief and faith in the you! that was created from the day you where born, to now! I know pain will follow and its not going to be easy to overcome the obstacles. And you may well find yourself asking was the decision to not give up, the right one and it may well have been. However by giving up you are not testing yourself , and okay it sounds like the easier option. But every day you fall to your feat, you can get back up stronger than you had been moments before because someone if you know it or not has faith, that you can achieve. My mum has always said its not you cant, rather you can and I know you find it hard but try and if you really cant then ask for help but first try. I am not going to sugar coat it, because trying is never easy, its alot of hard work but sometime why we fight can bring us to find 'acceptance'. To challenge the obstacles, creates greatness. When looking in the mirror, tell yourself what you see! Even without being there I can tell you what that is, ' greatness to embrace what has to come'. When we think of tomorrow do we see another day, time for pain or opportunity. Sometimes you don't have to understand what tomorrow is nor what it brings because by aiming to understand what is to come, we forget to focus on the today. Benjamin Franklin once said 'If you do tomorrow what you did today, you will get tomorrow what you got today'. It took me a while to grasp this but by conforming to fit in and be accepted we miss the meaning of why we are here. The dreams, ambitions and goals which if we repeat what today was we will get the same outcome tomorrow. So believe that the thing that makes you stand out as this, is the thing that will make tomorrow different. I know people talk about how much can happen in a year and you think, "here we go....". I guess it is true though, this year for me was a complete surprise in so many ways! This time last year is on I will not be forgetting for a while, that's one thing for sure! From the moment 2014 began it has been non-stop.
I have to be honest it has been a roller coaster of a year, In June my life changed, once again with the regrowth of my tumour... for a while I found it hard to see the bright side of anything and despite the pain and disruption in my life it caused. It did bring some good, as it made me realise that "LIFE IS SHORT" is all but true! It is a statement we hear in music, hear in movies and statements made by the people around us. My response before this year to anyone saying that very statement or one similar, would have been to say... that I have all the time in the world and would not have thought about it again. But I have to be honest and say that the moment I lay there about to be put to sleep for my operation, a number of questions and thoughts came to mind. One of which was, what story had I written till that moment till that and if I made it out in one piece, what else was left to write. in the following weeks and month I made the decision that when I do die I want to live a life that will be remembered not for my illness or disability! but my accomplishments and the path I lead. I have never been the type of person to just make decisions in the spare of the moment and don't really like taking risks because of the fear that surrounds alot of life's opportunities. In 2014 one of the biggest things I have learnt is that not following the crowd and being yourself, is more important than anything else and once we learn to do this we begin our journey of the pursuit to find happiness. Greg Anderson, once said.... "Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it." and in alot of respects, it's true. Alot of things have happened over the last year and if I listed them we would be here a while! However what I can say about my journey from this time last year as, is that I have taken a journey that has led me to meet friends I can call family, it has let me continue to work and deliver projects projects and campaigns as part of my #IFightFor. Most importantly it has made me become aware of the message Greg Anderson, 'Focus on the journey', so as we go in to 2015 my New Years resolution is simple LIVE. I hope you will join me over the next year as i follow the journey! I will do my best to post on here once a week or more if I can! I will leave you with some of my favorite photo's from the last year!..... |
AuthorBrain tumour survivor. Ambassador, campaigner and co-founder of #IFightFor Archives
January 2019
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