After the initial few weeks of adjusting to working and studying from home, and not being able to see friends and family due to shielding, I soon found a 'new normal' and focused on the things I could control. I completed the first year of my course with the highest grade I could get and managed to continue to work until the college broke up for the summer holidays. I was lucky compare to many who struggled to study remotely and many were furloughed.
Don't get me wrong it hasn't all been sunshine and rainbows, but I am choosing to focus on the positive elements and the silver linings as oppose to the negative side of things!
I start work again soon, as well as the final year of my media production course. There are a few on screen media opportunities over the coming weeks too but you will have to wait to find out more about that soon... Stay safe out there!
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The weekend I injured my shoulder I had just been told by the Head Coach at ArcheryGB that I was down as being a medal hopeful at the Rio Paralympics. I couldn't believe it and I couldn't wait to go to Rio. Little did I know that by the end of that weekend I would have shot my bow for the last time for a long time. Being so close to what I was working for, and dreaming of, hit me harder mentally than I ever thought it would. After working so hard for so long prior to the games I needed some time to recover and I don't just mean physically. Psychologically I was ready to start shooting again this time last year really but I didn't have my hip replacement until March 2019 which took several months to recover from. Then add a couple of short stays in the hospital the end of last year and we find ourselves in 2020! As cliche as it sounds; where does time go?
Today I have my first session at college. I used to train here regularly in the lead up to the last Paralympics. That was a big part in me deciding to come to SGS College back then. They had the courses I wanted to do but also all the facilities I could need to train. I started back at SGS in September last year doing a foundation degree in media production. This was a decision not just for my future in the media industry but also to utilise the facilities again. I can shoot full competition distance in the indoor astroturf, their is a gym with all the equipment you could wish for and then there is the access to things like physios, nutritionists etc. At SGS I can study, train and work under one roof so to say as I have just taken a job with the college as a support worker in the Media classes for those aged 16-18 (mostly). I know I have only just started shooting again after a significant amount of time off but it seems to have done me the world of good. I'm mentally ready and stronger than ever and in the best physical shape that I can be in considering my body and condition.
And that's exactly what I am doing; giving it one more try!
Time flies right? Everyone always say so. Where did Summer go? Its almost Christmas etc etc. Well I totally agree! When I was stuck at home for a few months after having my hip replaced I was really scratching my head about what I would do when I was back up on my feet so to say. Never did I expect to say that doing a TEDxBristol talk was on the list of things I would do before the end of 2019 but it is! I am! In less than a month as well... The preparation has been going well. I got my script finished within a couple of weeks of finding out I was confirmed as one of this years speakers. The slightly harder part has been learning it because I need to know it off by heart by the big night! I have been practicing every day. When I am in the shower, when I am driving, cooking. Just letting it looped round in my mind. In the mix of all this I have started my degree in Media Production and still working as a freelance journalist. Sounds busy right? But I have also been ensuring quiet progress is being made on the fashion front to back up what I say in my talk. I don't want to be all talk! There will be action too! So I have been collaborating with a very talented fashion graduate and continuing to have help and support from the Princes Trust. I won't say anymore on that front for now though. It's all still hush hush! So what else is there to do in the next month? Well being girly about it I have my hair being coloured and cut next week and booked an amazing make up artist for on the day. I have ordered my outfit and made sure it fits of course! I thought with my talk being about fashion I should have something nice to wear. I think all I need to do now is to enjoy this time and make sure I give the best talk I can! Oh! And I did a podcast with TEDxBristol too. In the lead up to the big day there will be two more released about two of the other inspiring speakers. Mine is about my involvement in sport and how that led me down the path to making fashion inclusive and ultimately to being part of the TEDxBristol class of 2019. If you have a spare 20 minutes maybe give it a listen I can't believe I am saying this but I am doing a Ted Talk! It all happened very fast but on Sunday 17th November 2019 I will be taking to the stage at the Bristol Old Vic to do a Ted Talk as one of the fifteen TEDxBristol Speakers 2019! I don't wan't to give too much away but my talk is about rebooting fashion and its inclusivity; or lack of inclusivity currently! My profile on the TEDxBristol Website reads: Why isn’t fashion inclusive of disabled people? There are almost 14 million disabled people in the UK, but the fashion industry seems to be ignoring them. As a result, businesses are losing a potential two billion pounds per month in ‘purple pound’ revenue, and high street shops are forfeiting £267 million. Chloe Ball-Hopkins is a wheelchair user on a mission to find out why such a large sector of society is still invisible to retailers. In July 2018 she pioneered a collaboration with ASOS, the brand that supply kit for Great Britain's Paralympians, to create a jumpsuit which met her need for comfortable, practical and fashionable activewear. The campaign took the fashion and media world by storm… with Vogue, Grazia, Elle and New York Magazine taking up the story. But a year on nothing more has been done. Chloe’s TEDxBristol talk will explore why the fashion industry is dragging its heels, and reboot the mission to create accessible, fashionable clothes for all. Chloe Ball-Hopkins is a freelance journalist, archery champion and wheelchair user from Kingswood in Gloucestershire. She was born with a condition called Arthrogryposis which led to numerous operations on her legs. At four years old she was diagnosed with a form of Muscular Dystrophy which means she has weaker muscles. This hasn’t stopped her taking on a variety of big challenges - from competing in the Para European Championships and winning the Bronze medal as an archer to most recently taking on the fashion industry! Her mission is to create clothes that help people like her feel comfortable and fashionable whilst being in a wheelchair all day. Even something as simple as having a handy pocket to put your phone would help. The industry doesn’t seem to have cottoned on to this huge gap in the market - yet. Chloe has just returned to South Gloucestershire and Stroud College’s WISE Campus to do a degree in Media Production while working within the fashion industry to create inclusive fashion. I have finished my script and have the next few weeks to learn it off by heart ready to present to the audience of 500 in the theatre on the night and not to forget the hundreds of thousands who can watch the live stream of the event! There are so many amazing speakers on the day broken down into three sessions. You can see the full line up on the main website: https://tedxbristol.com/speakers If you would like to get tickets to come and watch me on the big night you can get your tickets here: https://system.spektrix.com/demo1/website/CookieBounce.aspx?redirect_url=https%3A%2F%2Fbristololdvic.org.uk%2Fwhats-on%2Fmini-series%2Ftedxbristol-2019 I am in the reboot session! I hope to see you there! When you hear the phrase "please go to gate 36" you would like you are boarding a plane right? Or at least I do. But not this time as in Southmead Hospital this is how you get to the right place for your appointments. Today I am going for my Pre-Operative Assessment which from memory consists of the following: Height and weight check Swabs for MRSA Sometimes a blood test A game of 20 questions about your general health Seeing the Surgeon Seeing the Anaesthetist (had to google that word to spell it mind!) All sounds like a conveyor belt of things really but hospitals can get behind and there is a lot of waiting around. Don't get me wrong I do understand that happens but it can just get a little boring while you wait. Luckily for me my Mum is coming with me to keep me company! It's odd you know! Up until this operation my Mum has been with me every time on the big day itself (and I don't mean my wedding day because that hasn't happened yet). Every operation I have had my Mum has been there from the moment we arrive at the Hospital until the moment we leave it to go home. But this doesn't happen in the adults hospital - and she works now too! So from the research I have done visiting hours are 10am - 8pm with a restricted lunch time so my Mum can come straight from work to visit me for the evening which will be lovely but it's so different. On the day of the operation this time my Nan and Boyfriend, Dom, will be coming to the hospital with me but even then it will get to 8pm and they have to leave before they turn into Pumpkins! Yes I know I am 22 years old so I am old enough to be okay with this of course I am. But! It's just so different to the previous times I have been in for surgery - and thats been a lot of times! But anyway back to today! My mum is coming with me to keep me company but also to still play a part of the support network I have. She's actually taken the afternoon off work to be able to come with me - Isn't she a star! But that's what people like my Mum do. They are there for you when you need it as much as they can be. Well the Pre-Op was actually plan sailing for once which was nice. Bloods were taken easily for once and it was just a conveyor belt from Nurse to Pharmacists to Anaesthetist to Surgeon allowing me and my Mum to go and get Spaghetti Carbonara together which was nice! Occupational Therapist and Hip Group SessionAs if being in Southmead for the afternoon on the Monday wasn't enough I was back the following morning with my Nan for what was wrote down as a Hip Group so I wasn't sure what to expect.
Basically it was a chance for physios and Occupational Therapists (OT's) to explain to a number of us having hip replacements what to expect pre, during and post surgery and I am not too sure how to feel about it actually. Good news is it shouldn't be too long until I can get out of hospital and start working on recovering at home where I want to be - but it sounds like the bad news could be that I am stuck in that house for 12 weeks because thats how long it will be until I can use my own wheelchair again. Even the idea of 6 weeks was bad enough but to practically double that time is heartbreaking really. Luckily I have a very good guy who sorts out my wheelchair for me who may have a chair I can borrow that I can be pushed in to at least get me out of the house during those few months when I can't be independent. So what between now and the big day itself? It's just a case of making the most of the time and trying not to get stressed out about it. I am going to enjoy spending time with friends and family going out and doing things before I will be a little stuck for a while. I know I complain - I am only human after all but I know that it will all be worth it and I have a few things I am working on which will be good motivation for me during the coming months! It's also a good excuse to binge watch lots of TV and Films so has anybody got any suggestions for me so I can start writing a list? Sorry for those of you who already know this but I was born with a condition called Arthrogryposis which basically means I had deformed hips and feet which has required more operations than I can count over the years. Being diagnosed with Muscular Dystrophy at four only added to the complexity as you can imagine! I have done well and managed to avoid any surgery on my legs for 7 years but the time has come to replace my right hip … at 22! So the first thing I do of course is google it to see whats what to find that all the information available is for how should I put it … the more mature patients! There also isn't any information out there for someone having a hip replacement who is a wheelchair user. Now I can “walk” a little with the help of things like people and crutches but 99% of the time I am in my chair which for about 6 weeks at least I won’t be able to sit in so I believe - There’s this thing about being able to sit at 90 degrees or something? So I thought the best thing I could do would be to bore you all which a series of blogs about what this experience is like for someone younger and who already has a medical condition which will play a part in the surgery itself and the recovery. I am going to dive straight in … I was told my surgery would be about September time so when the letter came a couple of weeks ago telling me it was 19th March I said a few naughty words I must admit - naughty Chlo - but it was a real shock! A good shock I think … My head instantly went to the fact that I am a Freelance Journalist now so theres no sick pay as such for my time off so I have had to start being a scrooge with my money to be able to get through the next couple of months when I won’t be able to get out the house much let alone get to work. Then I starting thinking about the things I needed to get for being in hospital and there was only one place to start for me - PRIMARK! So here is my list of things to buy (based on what I got) for when you are staying in hospital (if you are a female): Basic Jogging Bottoms - £5 a pair Basic T-shirts/Jumpers - £5 each Buttoned Up Night Shirt - £11 (Had to be the Beauty and the Beast one for me!) Comfy and Modest Panties (I went for boxer style) - £5 for pack of 3 Slipper (Memory Foam) - £4 Trainers (With a good sole that are easy to get on/off and happened to have a memory foam insole) - £8
This is a good starting point because time flies by … I had a month to get ready from when I got my letter in the post and it’s already down to two weeks! So this is where to start. Get your basis bag sorted ahead of time - the less you can stress about in the lead up to the big day the better.
Anything you think I have missed? Let me know ... A few already have so thank you for the feedback!
This all continued because by the start of the weekend it was in Vogue! And in pretty much every other magazine like it from Cosmopolitan to Elle, from Hello to Okay, from the Daily mail to the Sun. I believe there are over 50 articles about this across the globe. Literally. I am reading articles from Mexico, Brazil, New York, Canada, New Zealand and Australia to name only a few of the countries! My tweet itself is on over 7,000 likes and 1,600 retweets! The world is loving the fact that not only has my collaboration with ASOS starting changing fashion, I was also the first person in a wheelchair to model in this capacity and man am I honored to be able to say that! It may have been international news but what means the most to me is the comments from the people who are going to benefit from these changes to the fashion industry. Some of my favourite comments are ... “Diversity without tokenism” “This is honestly the first time I have ever seen a disabled model in a ‘normal’ set up, rather than a special one off to gain attention” “You are such an amazing role model and you look amazing in this - this needs to be a huge campaign- more needs to be done for a huge percentage of people that are different in one way or another - more platforms, more opportunities” “I hope other brands take note having a “disability” is not stopping anyone ever just give opportunity and let the talent speak volumes - I pray it gets better for my daughter and so many others”
“And now I ask to all the other big brands out there, if ASOS can do it, why can't you?”
I went to Splendour Festival in July last year and I dressed appropriately. I have a pair of patterned culottes on with a crop top and cardigan. But surprise surprise it began to rain! I had thought of that though! I always have to be thinking about things like that. So my boyfriend, Dom, went off to the car to get my waterproof hoodie, still trying to look as fashionable as possible as well as staying dry! Then it started getting cold and it wasn't even evening yet. Much to my disgust Dom went back to the car to find layers to keep me warm and dry. I can remember saying to him "I look like your granny who you've taken out of the care home for the day". Dom just looked me up and down and nodded. The next day when I woke up I decided it was time to have better, fashionable, options for people like me. When I say people like me I mean young people who want to do enjoy festivals, concerts and so on but just happen to have a disability! And that's when the idea of a waterproof all in one came to me! I thought about it and thought about it. What does it need to be practical? But how can it still be stylish? Once I knew what it was I was asking for I sent a few emails around. Never did I expect ASOS to come back and say we would love to help you do this! It has a jersey lining to make it conformable to wear. The top part has a zip all the way down like a jacket because it is a jacket, that you can wear on its own. You can also wear the trousers on their own too ... and then you can zip it together around the waist to make it an all in one! Practical right? On the top left breast of the jacket there is a pocket that is completely waterproof. Handy for a phone or for important medical information for in emergency situations. So between August last year and now that is exactly what they have made. Now I am able to type that the all in one waterproof I have designed with ASOS is available! But here is (what I think) is the most important part of this garment ... It isn't just for people who are in wheelchairs, it is for anyone! I can wear it, my best friend can wear it too! That is why on the website there is another first, I am wearing the all in one for you to see, but alongside another model who is “abled bodied” to show you that it’s for people like me, and for everyone else too! Outings in the wet and cold and getting wet and cold are a thing of the past ... and we can do it in style too! It isn’t about making accessible fashion, it’s about fashion being accessible and that is what we are starting to do! I will spare you the full story because that will take all day but part of it is pretty important and relevant right now so keep reading and it will make sense. At 4 years old I was diagnosed with a rare form of Muscular Dystrophy called Nemaline Myopathy and I mean rare. Even when I say the condition to medical staff they have to google it!
The way I have the condition is different to others with the same diagnosis though, even Great Ormond Street Hospital couldn’t get to the bottom of it all (pretty impressive in a way right?). So with this in mind there is always bumps in the road that aren’t necessarily expected for my condition and other time there are things completely typical to my condition! Confused yet? Everyday is an adventure to say the least. So I work, as you probably know, and recently a nasty virus has been working its way around the newsroom and when Geoff who sits next to me went down with it over New Year I knew it was me next. The start of this week I got a cold and was managing pretty well considering and recent tests showed my lungs were clear and working at 98/99% in terms of oxygen levels. Now if you were to get a virus you rest up a few days with some cold and flu and then get back to it. Well it doesn’t work like that for someone like me. In 2012 on the Monday I had a cold and by the Friday I was fighting for my life which is a scary thought. So right now I am home with what began as a cold and became a virus which luckily isn’t affecting my breathing (yet) so preventative measures are put into place in a heartbeat. I have Vick Vaporub on my chest as well as mixed with hot water in the room. I am sniffing Olbas oil and using Cocoa butter on my nose to try and stop it getting sore from blowing it so much. Hot showers are also good for trying to clear your airways. All of these are thing you could do when unwell but using a cough assist and ventilator aren’t things you have to do are they? I first starting using a ventilator way back in 2008 and I have to admit its one element of my condition that I have always hated and rebelled against. The first vent nurse I had, Hayley, has the patience of a saint! In 2012 when I was unwell I had to use the vent more to get my lungs working again but since around 2013 the vent now only comes out if I am unwell to keep my lungs going to prevent anything going onto my chest. The cough assist has a similar concept. I cannot make myself cough, and if I do have a cough when unwell its pretty useless, so the cough assist helps keep everything moving so nothing can settle on my chest. Like I said this is an element of my condition that I’m not a fan of and have always tried to keep hidden but I realised today when I put it on watching Suits that actually these machines help keep me alive and well so I really should appreciate it instead of hiding it (from myself and the world). I bet I am not the only one in this position either. As a 21 year old who is fairly independent person I don’t want to believe there is something I can’t do but every now and then I have to realise that actually my lungs can’t do it if it gets down there so sitting with a mask on for a couple of days isn’t the end of the world … but not using it could be! So if you’re reading this and you’re the same as I was. Please stop and think. Yes it’s “not cool” but it is saving yourself, so let it! Don’t be stubborn and just sit down for awhile and get yourself well again! Annabel Hayter. How do I even begin to tell you about this remarkable lady! How about I just tell you about how I know Annabel and you can work out for yourself why I am saying she is remarkable?! ...
I first met Annabel, and her husband George, a number of years ago at a Muscular Dystrophy UK Spirit of Christmas Carol Service at the Gloucester Cathedral. It was a Q&A really of them trying to find out as much about me as they could in the 20 minutes we had talking before the service itself began where they learnt more about me when I made a speech. The following year (Christmas 2015) I was at the reception for the same event, as it’s an annual thing, but no George. I learnt that he had passed away. Annabel told me that I had made quite an impression with him though and that she wanted to support me within my sport. Annabel explained that in the Spring of 2016 the Hayter family were holding quite an event at the Gloucester Cathedral; a memorial for George. She went on to tell me that the money raised from the event would be donated to my Road to Rio and she also donated herself to ensure that my mum and brother could join me in Rio de Janeiro for the 2016 Paralympics which I was training for. By the time the memorial came around it was unknown as to whether I was going to end up having surgery on my shoulder which would rule me out of the games that year. But sadly that is what happened; I ended up having my shoulder pretty much reconstructed in the May last year meaning my nightmare became a reality and I wasn’t going to be wearing the Paralympics GB kit. I offered the money Annabel had donated back to go to another cause of her choice but she told me to keep hold of it for the Tokyo 2020 Paralympics because she wouldn’t be here then to support me emotionally or financially. Because what I haven’t said in all this is that during the time I knew Annabel she was diagnosed with cancer! The Amazing Annabel never gave up though. She kept going and doing everything she could right up until 30th August 2017 when she joined George like I said. I attended her funeral yesterday (19th September). It was very surreal. On 30th August I went to send Annabel an email to say the night before I had presented the sport on Points West and to ask if myself and my mum could go and visit her the following monday. As I opened my emails I had received one from her email address, I thought maybe she had seen my TV piece anyway. But no. It was an email from her daughter Victoria telling me that Annabel had passed away that morning. I was just too late! I was never, and will never, be able to thank her enough for what she has given me. She has given me more than a financial donation. She has given me the opportunity of a lifetime; the opportunity to continue reporting and presenting with the BBC as well as train for the Toyko 2020 Paralympics! I can finance myself. Now I know that as time goes by I will need to start looking for sponsorship but Annabel has given me the head start I need to do all I have ever wanted too and if/when I make the 2020 games I will have achieved everything I want before the age of 25! Leaving me with so much more of my life left to do so many more things. I realised at her funeral that this is what she does. She made everyone else’s life complete and in return she was rewarded by making these things happen. Being surrounded by a big and close family would have completed her life too I am sure. But the other message in this is that you can’t delay things. Don’t think to yourself I will send that email in a bit or I will call them back later. Because you never know when it’s too late. I just take peace in the fact that Annabel will be with me all the way to Tokyo and back and if/when I win a medal there. It’s in her memory and for her. I will continue her legacy! |
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