Blog: CP and Me
Sharing YOUR stories from around the World.
21st October 2019:
“Mine and other people’s perceptions of Cerebral Palsy made life tough for me growing up, but it’s made me the strong person I am today, so I honestly wouldn’t change a thing”
James Shaw, Wheelchair Tennis player, had dreams of being a professional footballer. However, he and his parents thought sport wouldn’t be an option for him… until he discovered Wheelchair Tennis.
I was in Sardinia, it was 9.45pm on October 2019, and all spectators had left to get dinner hours before. I was 2 match points down against my Great Britain teammate and I had one more shot to get into the biggest final of my career; here, I realised how far I’ve come from hating my disability for not allowing me to play the sport I loved.
My name is James Shaw and I’m a professional wheelchair tennis player, 4-time national champion, former world team champion, and Cerebral Palsy athlete.
Growing up, my dream was to be a professional footballer; I still remember seeing my parents face as they had to tell their 7-year-old son he wouldn’t be able to achieve his dream because of Cerebral Palsy. Looking back, I know how difficult this discussion must have been, as I know it wasn’t nice for me to hear. I had a plan though! To be a runner like my Dad and again, as I am a full-time wheelchair user this didn’t seem like a viable option.
When I was younger there wasn’t the same everyday knowledge of disability sport, but as I had shown a keen interest in it my Parents took me to a multi-sport try out day. On that day basketball was my favourite but because of my age and distance to travel I tried out at the local wheelchair tennis session first. This was my first real experience of seeing other people with disabilities being active and doing something I saw my friends at school do, this really excited me, and I quickly got hooked.
Up until age 16 I carried on playing tennis once a week and started asking my parents to take me to competitions as it was my dream to earn a trophy at any level. The issue was I showed no real ability to play competitively as shown by one of the tennis coaches saying, ‘you’re not good enough to play the lowest level of tennis competition, if I were you, I’d find another sport’. I was going through my teenage years with poor self-confidence as most do, I required an electric chair to get around which made me feel very different to friends, I had to have time off school with operations, and now people were telling me I wasn’t good enough at a sport I spent almost all my life playing. All this changed me from a young child willing to try anything into a shy teenager struggling to even make a conversation with my classmates.
Luckily for me I met a new coach who bluntly said I was using my disability as an excuse not to push myself. I wasn’t aware that I was doing this as I just didn’t see anyone like me living a ‘normal life’ let alone playing sport at a high level. I thought I was born with CP, it wouldn’t get better, and the aim was to do physio to merely make sure it didn’t get worse.
Through specific training like boxing, climbing, sawing wood, and using nun chucks to name a few, I started to activate muscles I never thought I would be able to. This not only rapidly improved my tennis skills, it also gave me the strength to push my own manual chair which was a huge deal to me because it made me more independent, no longer made me feel like a burden, and pushed me to speak out and make relationships that have lasted to this day.
By improving upon the effects of my disability, I discovered the love for learning and it made me realise even if there’s no simple plan for success as CP is so different from case to case; by making adaptions and being willing to push through the unknown you can be the best you can be. Everyone with a disability or not has something trying to hold them back whether it be poor body image, low confidence, or a lack of motivation, but within my story I’ve had all these and have truly turned things around and continue to do so to this day.
Through my relatively short pro career so far I’ve achieved a lot on court, but recently realised how much I’ve taken my progression off court for granted. By speaking more about my journey to this point through a new audience on my Youtube Channel: ‘James Shaw Wheelchair Tennis’ and winning my semi-final match in Sardinia when the pressure was on and all seemed lost, I’ve realised how many life lessons sport has taught me. I was the shy kid who couldn’t push around school, now I can win professional tennis matches, speak about my journey in front of large crowds, and even push myself into doing modelling work. Mine and other people’s perceptions of Cerebral Palsy made life tough for me growing up, but it’s made me the strong person I am today so I honestly wouldn’t change a thing about it.
If you want to hear more about my journey to the Tokyo Paralympic Games please follow/ subscribe to me @JamesShawTennis on YouTube, Instagram, Facebook, and Twitter.
28th August 2019:
“RaceRunning changes people’s lives – and it really has changed mine!”
Henrik Eriksson, a RaceRunning athlete from Sweden, told us about his recent trip to Kenya to spread awareness of RaceRunning and Cerebral Palsy, and even take part in the KICOSCA Games!
After two flights and a total traveling of 20 hours with barely no sleep, we arrived in the capital of Kenya, Nairobi. Our dear friend and guide Apollo in company with his two drivers met us at the airport. The travel so far had been pretty tough but since none of us had been in the south Saharan region of Africa we did not know what to expect next. The upcoming journey of 260 km to Kericho took us almost 9 hours including a short break. The roads were full of speed bumps so it wasn’t possible to keep a constant speed. The traffic in Kenya is pretty hectic which includes using the ditch as a part of the road. It wasn’t all too unusual to see donkeys and cows close to the cars, but we reached the final destination at last.
After a big sleep-in to collect the lost hours of sleep we had the pleasure to visit the athletics arena and meet Kenya’s first ever RaceRunning athletes, Kevin, Victor and Sandra. We put together the two RaceRunning frames we brought from Sweden and started to test the tracks. It was a new experience for me since I’ve never been running on a track made of pure asphalt before. As we were running, all of a sudden a fire brigade drove into the arena and covered the whole track in water to clean it in preparation for the opening ceremony of the KICOSCA games.
The night before the opening cermony and the first ever 100 m RaceRunning event on Kenyan soil, my assistant and I got to feel the trouble between a couple of Swedish stomachs and the Kenyan food. Anyhow, the opening ceremony was a fantastic experience! The teams from all 47 counties in Kenya entered the arena, singing and dancing. Altogether there was something like 8000-10,000 people at the arena! After the speeches by the Governor of Kericho and others, including my mother Vicki who was invited to speak as a representative for Sweden and CPISRA, the first ever RaceRunning event Sweden vs Kericho, was going to take place.
Even though I wasn’t in my best shape I managed to become the first African champion in RaceRunning, but it was a tight race. Ntv, the biggest tv-channel in Kenya, broadcasted the race live on national television and afterwards we were interviewed live. My competitor Kevin ran very well for being on a RaceRunner for the second time in his life and to compete in his first ever race. I think he has great potential!
The interest shown by the local authorities was greater than I ever could imagine. I had the pleasure to meet the Governor of Kericho Professor Paul Kiprono Chepkwony at his office, to introduce myself and the sport I’m doing. He showed great appreciation and a lot of interest in the sport and to rise CP awareness. In connection to this meeting we had an official handover of the RaceRunning frames to Kenya’s parasport coaches along with CPISRA brochures and t-shirts printed “RaceRunning – changes people’s lives”. It was a pleasure but also a little bit sad to hand over my old RaceRunner that I have used for the past 5 years, the memories I have with that RaceRunner is unforgettable. But I’m very happy that it will help creating history in Kenya and hopefully spreading RaceRunning to the rest of African continent.
We also got to meet the deputy Governor of Kericho, Ms Susan Kikwai for a very nice lunch. Very early Thursday morning (3am!) we left Kericho to go back to Nairobi. Our friend Apollo had managed for us to meet the Deputy President of Kenya, Mr William Samoei Rutto and his First Lady Ms Rachel Rutto at their residence. It was a great honor to meet them and talk about how Kenya could be the locomotive for RaceRunning and to raise CP awareness not only in Kenya but in the rest of the African continent, and we handed over some gifts.
In Nairobi we also paid a visit to the Swedish Embassy to meet the Swedish Ambassador, Ms Anna Jardfelt. She was very pleased to hear of our mission and would like us to contact her if we are setting up more projects in Kenya.
As always, it is important to have supportive friends, especially when dealing with parasport. Therefore we were very pleased to meet two of the world’s best long distance runners, Edwin Cheruiyot Soi (bronze medal at 5000m at the Olympics in Beijing) and Paul Tanui (silver medal at 10,000m at the Olympics in Rio). They are from Kericho but were in Nairobi for training with the national team and preparing for the African games.
We also met up with Elijah M. Aliero, Secretary General for Kenya National Paralympic Committee and Mr Jairus Mugalo, former board member of the IPC representing the African continent. Both of them very eager to help spreading RaceRunning and to try to get some of their athletes to participate at the World Para Athletics World Championships in Dubai in November.
When going to Kenya I didn’t know what to expect. After spending a very intensive week I really like the country and the hospitality and I hope to go back some day. Of course they have a lot of challenges due to poverty and unemployment, but what really amazed me was the hospitality and the honest interest in listening to what I had to say. RaceRunning changes people’s lives – and it really has changed mine!
19th August 2019:
“Without horses I couldn’t be me, it gives me the sense of freedom that my body restricts me to have”
Tegan Vincent-Cooke started horse riding for physiotherapy at age 4. Now, at 18, she is a member of Team GB and has her eye on the Paralympics
My name is Tegan Vincent-Cooke and I am 18 years old. I was diagnosed with quadriplegic cerebral palsy at birth which means that my limbs are very stiff and have such a variety and range of different tones. One day I may just have a limb due to the stiffness in my legs, the next I can’t get out of bed because I feel if I move I may break a bone. It’s different every day. Living with a condition such as mine makes it very difficult to do things as a young kid. I wasn’t able to walk until I was two and I felt a lot of the kids were ahead of me and it was very difficult to keep up with my friends. Thankfully from what I remember my friends were very understanding at this young age and tried to make me feel as included as possible.
At the age of four is when the struggles began. My friends were playing sports that I couldn’t and it was hard to keep up with everyone. Instead while they did PE I often did my physio, which every kid aged 4 despises. Thankfully my physio Theresa Miller suggested to my parents that I should try horse riding and put in an application for me to join Avon Riding Centre for the disabled. Not too long after I had my first lesson aged 4 and a half on a little white pony named TicTac in which I feel in love. Although it was just walking around, doing a few stretches and stroking ponies it was the best activity I’d ever done. It made physio fun, when I rode the pony the stiffness of my limbs would slowly fade giving me the hint of freedom that I so desperately craved.
I continued riding throughout primary school which was also around the age I started competing in Dressage. To many, dressage is simply walking around in circles and lines to music. But Dressage is much more complex, it requires skill, accuracy, precision, teamwork. It is the art of riding and training a horse in a manner that develops obedience, flexibility, and balance, which I can tell you isn’t as easy as it sounds. But the challenge is what I love about it, I love that this was my thing that no one else could do as good as I can.
After a few years I became the best. Winning every competition I entered, winning national champion three times in a row, I was the best but I wanted to be better. I started to research where I can go and what I can do next. I was able to get the advice of Clive Milkins, coach of Paralympian Sophie Christianson, and he told me about Sophie’s journey to the Paralympics. Instantly that is what I wanted and the first step to do so was to join the GB Dressage program. The program is something that students are selected for when they are doing well and maintaining high marks. So I made sure that I trained and trained, every competition I wanted higher than the last. I’d actually get very upset if I didn’t get the score I wanted even coming first place, I was very hard on myself. Thankfully in 2015 my hard work paid off and I was selected to join the team.
Now at 18 I’m still riding and still riding with Avon. I’m also on team GB working my way up to get to the ParalympicsGB team in the near future. People are very shocked at how long I’ve been riding for and the rider I’ve become to be and to be honest I am too. But horse riding is something I simply couldn’t live without, not only is it physically therapy for my body it’s mentally therapeutic and allows me to clear my mind and channel my energy into something that I love. It gives me the sense of freedom that by body restricts me to have. Without horses I couldn’t be me!
There is one downside to being a rider though and that is in order to compete and be an Olympian you have to own your own horse. I’m currently loaning horses from here, there and everywhere but I’m desperate to get my own someday. In order to do though I hope to get a sponsor to support with the costs as horses are very expensive creatures to keep. But once I get my own horse that would remove the restrictions that loaning horses has and I’ll be able to train, compete and develop at a faster pace which then enables me to get that bit closer to my end goal. So if you know anyone that would like to support in any way at all I’d really appreciate it and don’t be afraid to get in touch.
12th August 2019:
Friendship and Personal Growth from the 2018 CPISRA World Games
Olivia Gallagher, T33 Wheelchair Racer, and Fabienne Andre, S8 Swimmer and T34 Wheelchair Racer, didn’t know each other before the 2018 CPISRA World Games. Since then, they have grown as good friends and are supporting each other to reach their inspirational sporting goals.
Written by Olivia Gallagher and Fabienne Andre
The CPISRA World Games creates so many incredible opportunities across a wide range of sports for individuals progressing to the next level, and also in showcasing the wide range of accessible sports and success of athletes with Cerebral Palsy. Not only do the World Games create sporting opportunities they also lead to incredible friendships and opportunities to progress and try new sports for the athletes that take part. Here is the story of Fabienne Andre and Olivia Gallagher.
Both Olivia and Fabienne had different journey’s to the CPISRA World Games and little did they know that it would be at this event in August 2018 that their paths would cross thanks to CPISRA, and that this would lead on to incredible friendships and a whole new range of opportunities.
Olivia’s Journey: “Back in 2014 it was difficult to find sporting activities to cater for all my disabilities and I struggled to know where I fitted in, therefore my personal confidence was very low at the time. I had been inspired by attending the Paralympic Games in 2012. My journey in wheelchair racing began when I attended a taster session at Weir Archer Academy. Initially I found it very challenging to be able to push the racing chair in a straight line, and at my first competition I went from lane 1 to lane 8. In 2015 I got classified as a T33 wheelchair racer and then in September 2015 after attending the CP Sport events, I won ‘Most Improved Under 20 Female of the Year’. Since then I haven’t looked back and I have continued to climb UK and World Rankings year by year. At the CPISRA World Games in 2018, I won a silver and bronze in the 200m and 400m. The whole experience was incredible, new friends were made, new lessons were learnt and what an honour it was to race for England.
With the support of the Weir Archer Academy I have gained more confidence both mentally and physically. Over the years I have learnt to accept that having a disability doesn’t define who you are it’s a strength of determination to succeed. DON’T SEE DISABILITY AS A BARRIER IT SHOULDN’T STOP YOU FROM ACHIEVING YOUR GOALS”
Fabienne’s Journey: “In August 2018 I represented my country for the first time having been selected to form part of the CP England Swim team at the CPISRA World Games in Sant Cugat, Spain. It was incredible to go to the next level in swimming representing my country, gaining 3 Silvers and 1 Bronze in the four events that I competed in.
The Cerebral Palsy World Games was an amazing opportunity in itself but in so many other ways too; through all the people I met that formed Team CP England. It was incredible to meet so many people like me but also see there are so many other sports out there to try. We stayed together as a team and were able to socialise in down time and watch other sports when not competing.
Not only did I meet many new swimmers but I also met lots of other people doing a wide range of sports. I shared a room with a legend – Sophie Taylor, who I felt very lucky to share with. Why, because she knew almost everyone… Being a para triathlete means that she knew those on the track and in the pool so I was introduced to many of the track athletes too.
It would be fair to say that Sophie and I got on very well and talked all things Triathlon which sparked an interest in considering my next challenge following the Cerebral Palsy World Games.”
Meeting new people lead to many great friendships for everyone at the games, particularly for both Olivia and Fabienne and also opened up incredible opportunities that the girls would least expect.
So here’s how and when Olivia and Fabs paths first crossed. It all came down to one photo and one afternoon socialising with other athletes in some down time before the closing ceremony. It’s fair to say they got on pretty well from the start with one thing very much in common, they love to chat, and have become great friends as a result!
Having seen Wheelchair racing at the Games, Fabienne was keen to try it out and when Olivia confidently suggested meeting up at a track competition, Fabienne was only too keen and saw it as a great opportunity to meet up with Olivia again and see many new friends made at the Games do what they do best. This inspired Fabienne to try wheelchair racing and it was again Olivia who invited her to come and have a trial at the Weir Archer Academy.
In October, Fabienne went down to the Weir Archer Academy to give Wheelchair Racing a try and it would be fair to say that after one training session and meeting the amazing Weir Archer Family she was hooked and needed to find a way of training with them as often as she could alongside swimming. “I felt Privileged to have been offered the opportunity to train with them as often as I was able and thanks to CPISRA and Olivia for organising for me to try it out, it became the start of a new journey and an incredible friendship.”
Olivia and her family were a great support for Fabs and their friendship grew. Alongside everyone at the Weir Archer Academy and of course the incredible Jenny Archer MBE and coaches too she began her first season.
Following on from the their amazing success at the World Games, Olivia was awarded Pride of Sport Young Sportsperson of the Year 2018: “What I have achieved in 2018 was more then I expected and made all those hurdles of challenges become worth while.” And Fabienne too achieved recognition in being awarded the Swim England South East Disabled Participant of the Year 2018 and ‘Against All Odds’ Achievement Award at the Argus Community Star Awards 2018.
6 Months from Fabienne beginning training alongside Olivia and Weir Archer Academy Athletes, very exciting news came for them both (alongside two other WAA athletes). They were selected by British Athletics to compete at the Muller Anniversary Games in July 2019 – less than a year on from CP Worlds.
For both to have this incredible experience together, alongside 4 others who had been at the CPISRA 2018 World Games (including Sophie Taylor), was incredible and a great showcase of the importance of the CPISRA events in both supporting athletes to reach the next level in sport but also opening up opportunities of trying new sports and so much more like the amazing friendships.
At the Anniversary Games Olivia was the first T33 in the T33/34 100m in a new PB time and Fabienne the second T34 to the World Record Holder for her category, also in a new PB time. The Anniversary Games were televised and had huge crowds too. Olivia said: “Ever since watching London 2012 I have always wanted to race in the London Olympic stadium, I thought to myself this is going to take ages but little did I think seven years after starting my journey I’d get the opportunity to race there.” Both girls said; “The stadium was amazing. To do this with family and friends watching was amazing and most definitely wouldn’t have been possible without their support.”
Overall an incredible experience for them both which wouldn’t have happened or been possible for either of us if it wasn’t for the incredible opportunity created by CPISRA holding the World Games last August. Little did we know the opportunities and incredible friendships that would be formed thanks to CPISRA. Both Fabienne and Olivia are excited to take any opportunities that come their way and will continue training hard and having fun in working towards reaching the highest level in the sport.
7th August 2019:
My Experience with Disability Football
Sam Harris from England was born prematurely and has cerebral palsy. He is passionate about disability sport having discovered the physical and mental benefits of playing disability football.
Born weighing just over 1lb and 15 weeks early meant life was never going to be straightforward. On the plus side, myself and my twin sister became local celebrities, the negative was the resulting physical problems.
For me, an early diagnosis of cerebral palsy meant that from about the age of five, I became aware that I was struggling with tasks others would find simple and natural such as tying my shoelaces, riding a bike and holding a knife and fork like a ‘grown-up’.
But one thing I could do – and loved doing – was kicking a football. At first on the school playing field, with jumpers as goal posts this was no problem.
However, as we all grew up and got faster and stronger – I didn’t. It became clear, mainstream football would prove too fast paced. Therefore, I decided disability football would still afford me the opportunity I craved and started at the Hertfordshire Disability Centre of Excellence.
This gave me my first taste of competitive football on a ‘level playing field’ with weekly training sessions and monthly tournaments. It was a Pan disability team which meant my teammates had various disabilities including: learning difficulties, blind/visually impaired, deaf/hearing impaired and cerebral palsy.
It was great to test myself in these type of conditions and helped with many aspects aside from playing football. It taught me how to communicate with people who had all sorts of issues – both mental and physical, people who I may not have interacted with so closely away from the football pitch.
This included driving with three teammates the seven hour trek to Scotland to play in a tournament. If spending that length of time with anyone doesn’t bring a sense of camaraderie nothing will!
Upon leaving, I look back on my time there and a great experience on and off the pitch where I learnt a lot in equal measure.
I then moved to the South-East Regional Cerebral Palsy team, the first time I had ever played with people who shared my disability.
I naively thought I would find the standard easy but I was in for a shock. Players there were much more experienced than me and before and during my time there, had been recognised by England and Great Britain CP teams competing in tournaments all over the world and in the Paralympics.
All my coaches have been a guiding hand and offered my valuable advice – it definitely helped that my coaches at Hertfordshire and St Albans also follow Watford FC for their sins so we were bound to get along well!
Based in Chelsea at the same training ground as the Premiership team play gave me the chance to run along the same immaculate turf as Frank Lampard but the hour long commute on Sunday afternoons took its toll. After three years, aged 16, I decided to seek a new challenge closer to home.
This brings us to my current experience where I play for St Albans City Youth Disability and have done so since 2013.
A recurring theme throughout my football experiences is the people I meet and the sense of community around every team regardless of age and disability.
The opportunities and pathways for disabled footballers at the grassroots level are imperative and during my time I have seen four of my teammates compete and bring home gold medals at the Special Olympics World Games.
I feel the 2012 Paralympics was a major factor in raising the profile of disability sport and how disabled people are viewed in this country but we still have a long way to go.
Cerebral palsy football will not be part of the 2020 Tokyo or 2024 Paris Paralympics which could potentially block pathways for a generation of up and coming players.
21st December 2018:
Be Active, Be Healthy, Be Happy, Be Adventurous
Mel Nicholls, T34 Paralympic Athlete and Adventurer, told us why she loves to explore the outdoors
For me, being in a busy shopping centre, or trying to navigate through crowds either on my crutches or in my wheelchair isn’t much fun. I get knocked off my balance, I feel anxious as I can’t process through the many voices, people rush around you and often into you or landing on you, without much consideration, and generally these places for someone with a neurological disability can be a struggle.
Outside, I am me. The wind might be howling around me, the rain lashing down, and I might be pulling myself up a rocky ledge. But out here I feel alive, I have all the space I need to find my balance and all the time to take a minute and process and work out my next move, my way.
I have always loved the great outdoors, and always had adventure in my soul. I love sport and I love racing, with such a passion. But for me it is about much more than winning. Getting to do a sport that keeps me outside is very important to me, and any chance I can, away from my day to day training, I take to my own adventures. Pushing myself, as I do in my sport, but also reaping the rewards that being outside, amongst nature, in the elements, and in such beauty of our wild world when we take a moment to stop and really notice. It is certainly cathartic. As well as the physical benefits to anyone getting active outside, as someone with a disability I know my time spent in the hills, with the trees in the woods, and climbing up rocks with my arms, continues to make both my body and mind stronger. Parts of my body don’t work and never will, but my belief in what is possible, and mindset grows with each challenge, every time I head out into the unknown. It is calming yet empowering, it helps me refocus, yet I dream up a million plans in an afternoon. It is the best medicine for some time out alone, and yet the greatest get-together for friends and families.
It is important to stretch our comfort zones, it is the only way we improve. If you’ve only ever pushed to the end of your road, you’ll never know just how far you can go. Equally, if you’ve never been camping with your friends and roasted marshmallows on a camp fire, you won’t know just what that kind of an experience can bring. The gain in confidence, independence, friendships, and sense of adventure. Getting mucky and being pushed through squelchy mud is so much fun, for everyone involved! Yes, you’re going to get filthy and mud up to your armpits, but it brings out the inner warrior in you and soon you’ll be using your muddy fingers to paint battle stripes on your face and everyone around you.
I am an adventurer, I seek out wild places and tell untold stories, but adventure does not have to mean climbing mountains and sailing the high seas. Adventure is just as much a state of mind and can be accessible for all. It’s just about finding your way. With the right support you can abseil, raft down a river, take a pony trek through the moors, or spend the day with friends on a hill, with a hot flask of tea and a packet of biscuits. If it’s adventurous to you, it’s your adventure, and to me, there is nothing better.
I know I cannot climb Everest and I cannot mountain bike as I used to down the hills near my home. But through being brave enough to get out there and try, not caring what I look like or how slow I am, I have achieved far more than I ever thought possible and have found ways to do and to ‘can’, rather than to ‘can’t’. I have sat down (stand up) paddle boarded rivers and solo handcycled some of the wildest and most remote islands in the North Atlantic, carrying everything on my bike. I have taken tea (complete with teapot) with friends at sunset on top of a hill after they pushed me up there in my wheelchair to watch the sun go down on Midsummers day, and I have swum off the wild Pembrokeshire coast on a chilly November morning as the sun came up. Most recently I achieved something I have only ever dreamt of for the last ten years since my last stroke. Using specially adapted crutches and an incredible support team, I climbed a mountain.
Every one of those adventures meant so much to me. Many I never knew if or how much I could, and out of each of them I gained so much. Whether that’s learning and growth, or friendships and teamwork, so often moments stripped me back, to give me back me. Physically stronger and fitter and feeling like I could take on the world but at the same time feeling humbled by the world around me.
I have many more plans and more wild places to explore, my way, and I hope through my work and my adventures I continue to inspire others to find their way. I believe we are all Beyond Barriers and there is ALWAYS a way. Here’s to Getting Outside and Getting Active, Adventure Awaits…
3rd December 2018:
Katy Fetters of CP strong told us what motivates her to keep fit and healthy
Hi! My name is Katy Fetters and I am the founder of Cerebral Palsy Strong, an online platform for young adults with CP. You might’ve seen the Instagram account, where I often share my own experiences and feature some awesome individuals in our community. Check it out, and please reach out– I would love to share your #cpstrong story!
I have left hemiparesis and have worn the ExoSymTM kinetic orthosis on my left leg since 2016–it’s an extremely supportive carbon fiber brace that is best described as a hybrid between a prosthetic and orthotic device. It has truly changed my understanding of disability and my relationship with my body and I often think of what my quality of life would be like now if I did not pursue this option. When I first received my ExoSymTM I put all my energy into my gait and worked on breaking poor brain patterns to establish new ones. It wasn’t until earlier this year that I realized I needed something more so that I could really see what I could do. I figured, what better way to challenge myself with this bionic leg than to train for a 3-day, 120-mile multi sport adventure through the Florida Keys?
November 14th, 2018: on the day of my two year ‘exo-versary’ I coincidentally flew out to the Florida Keys with my boyfriend, Josh, to participate in this adventure with Project Athena Foundation. Fresh and in-shape from 16 weeks of cardio-heavy training, we were ready to kayak and bike from Key Largo to Key West (that’s the entire length of the keys!). I had no idea what to expect upon landing in Florida–all that was going through my head was, will my left arm fatigue too quickly on the kayak? Will I be able to keep up with everyone else? As I looked around me, most of these people appeared physically able and experienced adventurers. Ugh. I tried to ease my mind by trusting in all the training I had done to prepare for my first ever endurance event.
I have always been fairly active as I was raised within a culture of health and wellness. I played AYSO soccer until I was 19 and have strength trained regularly for the past decade. And it’s no secret that those with a physical disability have to work harder than everyone else to care for our bodies; even just to move we exert much more energy than your average person. Even so, I truly believe in the importance of getting your body movin’ and blood flowin’. I know it can be hard to just commit to something, I get it. Maybe you don’t feel like you’re any good at every sport you’ve tried, or you become self-conscious in front of other people…whatever it is, I think if you can find something you enjoy, whether through adaptive sports, yoga, a nice swim or bike ride, as long as it makes you feel good and you’re not hurting yourself–your mind, body & spirit will thank you for it.
To my surprise, I think I found commitment in doing this adventure, and perhaps more like this in the future. My commitment to myself paid off–the 3 day long event was perfect in every way; my body felt good and strong the whole way through and my confidence grew with every paddle stroke. And what I appreciated rather quickly was that my fears were never met: everyone was so supportive and we finished as a team the whole way through! I think with CP or not, it’s easy to dismiss something like this as too long, too much, too hard. I have had many moments of doubt about my physical limitations and most of all, it’s scary to think about falling behind everyone in a big group like this. I understand more than most that your body can only take so much wear & tear; I have had my fair share of physical exhaustion on mountain tops and stress fractures in my feet, both of which led me to the ExoSym.TM But what is unique about this foundation is that the only goal of every adventure is just to finish–there is no competitive element, no race, and no pressure to be in the best shape or the most athletic. I felt like this event was made for ‘people like me’ who have mobility issues, who can’t handle a ton of high impact, risk, or really it’s for those who want to get their body movin’ in a fun environment!
This foundation exists to support women who have endured medical setbacks of all kinds and as one of their Athenas, I was sponsored entirely by funds raised by other participants. It was pretty amazing to be the recipient of all kinds of support and kindness and to see other women “paying it forward” by fundraising for this event after they received their own sponsorship as an Athena. I encourage you to apply for one of their grants, it was one of the most rewarding experiences of a lifetime and perfectly suited for people of all ages and abilities. I feel pretty lucky to be sharing this with all of you–to have my health, my fitness, and to recognize that thanks to my ExoSym and this experience, I have really transformed the way that I identify with my body and all it can do for me. With cerebral palsy, I know it can be hard to be kind to your body, to love your body when all it does is fight against you… but what I’ve learned along the way is that this is the only body I’ve got so I better do everything I can to keep it in good health!
P.S. Thanks to my friends Beth Shaver and Dominique Dewitt for encouraging me to take this on, you are both #exosymplyamazing!