Sharing YOUR stories from around the World.
4th November 2022
Danny Teare (England) – Discovering my new potential
In this blog, Danny reflects on the integral role ocean sports plays in his life and shares how he is discovering his new potential after surviving multiple strokes in 2019/20.
I was surfing when I had my first stroke in 2019. My world as I had known it for 44 years suddenly ended… well that’s how it felt to me.
I had spent those 44 years happily pursuing all forms of sports and activities. I think my parents realised at a young age I was far happier being outside and experiencing the great outdoors and so encouraged it. I loved pushing my body to its near limit and discovering new skills and friends to share it with.
Due to this unexpected and life changing 1st stroke, I was advised to cease all activities until medical investigations could ascertain the reason behind it. Unfortunately for me, I was carrying a rare undiagnosed adrenal gland tumour for a further 3 months and then BAM! My life changed again!
I recall waking up in a hospital bed to be told I was 250 miles from home and needed 2 days of emergency surgery to save my life. This was the nearest hospital specialising in a rare tumour called a “Pheochromocytoma”. It was at some point during my 2 weeks in an ICU ward bed, that I looked down at my body and cried as I did not recognise any of my new self. It was also at this moment, that I turned to the hospital window and made a promise to get strong enough to enjoy the outdoors again.
One of my consultants told me afterwards, I had “dodged a bullet” and that he believed my background fitness gained from surfing and running had certainly contributed to my survival. The tumour had done its damage though; 5x strokes survived in total, 25cm surgery scar across my tummy to remove the tumour, a metal plate and x11 screws now holding my shoulder together due to a massive seizure I experienced which had left it dislocated and fractured.
The promise I made to enjoy the outdoors again required me to adopt an attitude of positivity and determination… very difficult to achieve at first, but with the support of family and health professionals I slowly saw small gains.
I call it “discovering my new potential” and my new normal means I am discovering different ways of enjoying sports and activities. In my 3 years now post stroke, my recovery journey has been inspired by the many great adaptive sportsmen and women I have been privileged to meet. These individuals have encouraged and supported me in so many ways. The adaptive surf team and coaches have helped me to return to a surfboard and I have participated in many adaptive surf sessions. The help of others has enabled me to pursue my love of the outdoors and I have discovered other ocean sports that I had never considered before.
I was initially (and understandably) advised against a return to surfing, due to my seizure tearing a vein in my neck. I turned my focus onto other forms of ocean sports which I would be able to pursue safely. and I have recently competed in UK and European Bodysurfing championships.
My journey to return to the outdoors prompted me to deliver a beach day for brain injury survivors and so I recently ran and walked 65 miles of the South West Coastal Footpath to raise money to fund other brain injury survivors and their loved ones to go surfing. We all had an incredible day at the beach with Coastal Crusaders CIC based in Newquay, and it is my hope to spread more positivity and stoke next year with more beach sessions for families.
Participating in sports and activities makes me so happy. I believe my passion in wanting to enjoy the sea again has been more instrumental in my personal recovery than any medication I have taken to date. I feel that I have been able to rebond with my wife and 2 young children through our family time outdoors. My mental and physical health has benefitted hugely from our time at the beach.
I nearly died whilst surfing… but my passion to get back to surfing has kept me alive!
You can find out more about the Stoked Stroke Survivors community created by Danny on his website https://www.sssands.org.uk/
21st October 2022
Aloysius Gan (Singapore) – Boccia has shown me I can dream big too
In this blog, Aloysius writes about his experiences of having Cerebral Palsy growing up and shares how boccia has motivated him to set big dreams for the future.
Hi, I’m Aloysius Gan, from Singapore! I was born in Year 2006, currently 16 years old. I was a full term baby, but there was a delay during birth, resulting in a lack of oxygen when I was born. I was diagnosed as athetoid cerebral palsy (also known as dyskinesia cerebral palsy). Since young, I have done various type of tests and therapies at hospitals, my parents even brought me to do therapies in other countries like China & Canada.
The trauma basically affected my trunk control and speech. I can’t speak clearly and have to depend on assistive devices to help me convey my message. I will also have involuntary movements that will affect my daily activities.
At the age of 3, I attended Early Intervention Programme at Cerebral Palsy Alliance Singapore (CPAS). When I was 5, the school has connection with mainstream kindergarten and I was selected to attend K1 at mainstream kindergarten. My mum had to accompany me in the classroom as I couldn’t sit firmly in class. However, after a year in kindergarten, my mum decided to pull me out from the kindergarten, mainly because I was unable to speak clearly and write; it was too difficult for me to follow the class curriculum. After that my mum started to explore ways of communication for me and she found a special type of keyboard called “intellikey keyboard”. I started to learn to type what I wanted to tell others using the keyboard which was connected to a notebook. When I graduated from Early Intervention Programme and transferred to School Programme at the same centre, I was assigned to “Functional Programme”. After a year, the school thought that I was capable to handle “Academic Programme” so I started to learn Mainstream academic subjects at CPAS. I continued to use the intellikey keyboard to do my homework and even used it to type out my answers in the exam. With this, I passed my Primary School Leaving Exam “PSLE” at the age of 13 years old! Currently, I’m still attending school at CPAS, mainly learning IT Programme, using an iPad and MacBook to design poster. I’m no longer using intellikey keyboard for communication as it has to be connected to a notebook but now I’m using AAC apps in my phone instead.
After I transferred to School Programme, I could participate in Co-Curricular Activity “CCA” in school. Initially I was in music CCA, after a few months, I was given a chance to attend a trial in Boccia CCA and was accepted by this CCA. Since then, it opened up my journey in Boccia.
Boccia is a precision ball sport, to win, a player must score the most points by rolling a set of coloured balls (red or blue) as close as possible to the target white ball which is called the “Jack”. Players must remain in the player boxes while they throw their ball.
I was classified as a BC3 player, which is open to people with several different types of disability, including cerebral palsy. They are unable to use their hands to throw the balls due to their physical disability, so they need to use a ramp to help them to propel the ball. And they also need a ramp assistant to assist them in the game. During the game, the ramp assistant is facing the athlete, can’t turn to see the court, and just follow the instructions given by the athlete. Every Friday my mother will join me in my CCA to act as my ramp assistant. Just 3 months after I joined this CCA, there was a local competition, so my school sent all the students in that CCA to participate in this local competition. At that time, I didn’t even have my own ramp and balls, so when it was my turn for matches, I just borrowed from other teammates who were not having matches at that time. And of course, I lost in my 2nd pool match. My mum always teased me by saying that I cried so loud in the sports hall when I lost the match and she felt so embarrassed, and quickly pushed me out from the hall to comfort me. And she recalled one of my teacher said:” Very good, he cried, which means he has expectations, he will succeed in future!”
After this 1st competition, my dad got to know more about this sport, and eventually stepped up as my ramp assistant until now. However, daddy has work commitments, my mum still helps me most of the time on weekdays. We will usually record down our matches played during training and review together with my dad. My dad will train with me during weekends.
There’s a minimum age requirement of 15 years old for international competition. Over the years, I could only participate in local competitions. In 2015, ASEAN PARA GAMES was held in Singapore, and I was honoured to be appointed as one of the athletes to lit up the cauldron during the opening ceremony. However, I was only 9 years old back then, so I couldn’t participate in the games. I’ve been training hard over the years.
Finally, last year, in 2021, I was finally 15 years old, and was selected to compete in Asian Youth Para Games in Bahrain. I was even got appointed as the flag bearer at the opening ceremony! It was my 1st international game, My dad and I entered the competition without much expectation, thinking that it would only be a learning experience. Little did we expect, I won a gold medal in my individual game! I also won a silver medal together with my partner in the pair game!
In April this year, I participated in my 1st sanctioned game organised by BISFed. I won a 4th place in individual game and a bronze medal in pair game.
I never knew that a person with cerebral palsy could achieve anything big, but with the sport I’m participating currently in, it has changed my mindset and I’m motivated to have a dream to pursue too! My goal is to be able to qualify for Paralympic Games. I will continue to work hard and I believe I can achieve it one day!
14th October 2022
Julia Dunne (USA) – Spirit of the Game
In this blog, Julia shares her passion for Ultimate Frisbee and discusses how the sport’s focus on Spirit of the Game has helped her become more accepting of her cerebral palsy.
Name, pronouns, and position; this is the standard introduction an ultimate frisbee player gives and hears in the group huddle when entering any given playing environment, be it a pick-up game or a tryout for a club team. For my first nine years playing ultimate, my introduction went, “Julia. She/her. Cutter.” It’s quick and conveys, for most players, just enough information – the essentials. For nine years I told myself that this introduction was sufficient for me, as well. But other players would soon notice that I couldn’t catch left-handed. They’d ask about my limp out of concern, and I’d shrug it off. They didn’t need to know the root of these symptoms and it didn’t warrant taking time to explain my disability and how it would present on the field amongst able-bodied teammates.
I first began playing ultimate with my university’s B-team because I didn’t have the speed, skill, or coordination to try out for our A team. I fell in love with the sport and our team. I played with them for four years, eventually co-captaining in my final year before graduating. My teammates were women who worked tirelessly to improve their individual skills and our team chemistry, even if we weren’t the most athletic players. We practiced three times a week, did regular strength and conditioning workouts, and competed at tournaments throughout the spring. We valued performing at our best. At the same time, we welcomed all players, regardless of their experience in the sport. We ranked highly in our region’s developmental division while making no cuts to our roster. It was the perfect environment for a mildly disabled young woman to develop athletically. It was also an environment in which I could keep up without disclosing my disability to my teammates or coaches. By choosing not to explain my disability, I felt that I could ignore the way it limited my play.
During a track workout in one of our conditioning sessions, a relentless sharp pain started in the outside of my left ankle. I went to our athletic trainer but did not explain my disability to her. As a result, her diagnosis was based on assumptions about how non-disabled bodies work. It couldn’t be a stress fracture in my fibula because in most people, the fibula is not a weight bearing bone. I walked out of her office, wincing in pain, with a diagnosis of a tight calf muscle and instruction to stretch and roll out. Six weeks and a visit to the emergency room later, an x-ray revealed that I had been walking on a fractured fibula since that day at the track.
The following year I had another major injury that went undiagnosed because I continued to keep information about my disability to myself. The morning after a spring tournament, a shooting pain started in my lower back and radiated down my left leg. According to the same trainer, and reinforced by a sports medicine doctor, I wasn’t experiencing sciatica because herniated spinal discs are uncommon in your early twenties. A year later I was on the operating table for a lumbar spine fusion. I share these two anecdotes to illustrate how my inability to identify as a woman with cerebral palsy prevented me from communicating openly with healthcare providers. The consequences for my physical health were significant.
Throughout university, and for years after, I kept playing ultimate while denying the existence of my cerebral palsy. I can (somewhat) comfortably share with you now that I have a form of cerebral palsy called left hemiplegia. The entire left side of my body is significantly weaker than my right and I have reduced control over my left limbs due to brain damage at or before birth. I am still working on understanding and forming my identity as a disabled woman who can, at first glance, pass as non-disabled and who plays a sport with and against able-bodied athletes.
This recent progress in exploring and accepting my identity has been extremely helpful to my physical health in addition to my sense of self. Now that I have the vocabulary to label and describe my cerebral palsy I can better access preventative and corrective healthcare in a way that I couldn’t before.
With imperfect, yet improving, relationships with my doctors and the occasional physical therapist, I keep returning to ultimate. The sport’s focus on Spirit of the Game is at the core of the accepting culture many teams exhibit. It is in this sport, largely void of other disabled athletes, that I have started introducing myself, “Julia. She/her. Cutter. You should know that I have a mild form of cerebral palsy that means the left side of my body isn’t very strong. If you have any questions as to how it impacts my play, and by extension, yours, feel free to ask.” So far, few have asked, but I am glad to be playing the sport I love being transparent about what my body can do.
23rd September 2022
Lisa Ferenc (Canada) – Challenging The Status Quo
In this blog, Lisa reflects on how boccia has helped her to find freedom again after a life-altering fall and shares her sporting ambitions for the future.
Hi. My name is Lisa Ferenc. I live in North Vancouver, British Columbia, Canada. I got injured in August 2015, mountain biking. I was doing a mountain biking lesson and I had a very minor fall on what they call a drop. I was a trail runner amongst other sports, and my husband just secured a job in the very popular mountain biking industry, and I wanted to be a better mountain biker so I could be able to ride with him. However that fall in August 2015 proved to be very severe and life altering. The fall severed my vertebral artery, which is right beside the spinal cord, and delivers blood to the body from the brain. As if that’s not enough, the fall caused CSF (Cerebral Spinal Fluid) and blood to pool in my brain and they had to remove parts of my cerebellum and brain stem as it was creating way too much pressure in my skull. This minor fall has led to numerous further operations and medical conditions. To say life changed for me is a huge understatement.
I had 8 brain surgeries and I couldn’t talk or move. I had a tracheostomy, feeding tube and had to be transferred via a sling to bathe, go to the washroom, etc. I have a BSc in Chemistry and a MBA (Masters in Business Development). I lived in the UK for 9 years and I had senior roles in the laboratory testing industry both in the UK and in Canada, where I was the president of a massive laboratory that had laboratories in Canada and around the world. I was very worried that my self worth was tied to my career. It wasn’t!
I discovered Boccia in early 2015 during a meeting I had with a disability advocate in Vancouver, BC. He was telling me about the Paralympics and how he had won a gold medal. I recall being very impressed and intrigued by this sport and this athlete/advocate.
I was released from the hospital in late August 2016, spending over 1 year in the hospital. I was discharged not being able to speak, eat or move. Fast forward to the last couple of years. I got my tracheostomy removed, my feeding tube removed and I can speak, although it sounds like I smoke 10 packs of cigarettes per day!
Initially I didn’t really want to do anything with sport as I was still wrapping my head around being severely disabled. In the summer of 2017, I kept thinking about that Paralympic athlete/advocate that I had met, and after much deliberation and trying out the sport at the rehabilitation hospital that I regularly visited, I started Boccia in the Fall of 2017. I instantly fell in love with Boccia. I played with a group of athletes in Vancouver who had all succumbed to various disabilities. I loved playing as it afforded me freedom, and at the same time, I was able to use my brain as the sport is very strategic. I entered my first competition in the Spring of 2018. After a few competitions, I was classified as a BC2 player (Boccia athletes need to be classified in order to compete. If you’re classified as a BC1, BC2, BC3 or BC4 athlete, there are many competitions that are available to the athlete including the Paralympics). Since starting Boccia in Fall 2017, I have had both challenges and successes in the sport. I am now a proud member of Team BC with aspirations of being on the national team and being on the Canadian Paralympic team. I have some challenges with my vision and by my ataxia, but I am very motivated to make more gains through learning and training.
I know that I have significant challenges but I want to keep developing and challenging the status quo.
Sport has given me new goals and I have to thank so many people who have supported me on this journey.
10th September 2022 – New Series Launch
I-Ting Tsai (Chinese Taipei) – Kicking toward a Paralympic Dream
Launching this new blog series, we have Chinese Taipei boccia player I-Ting Tsai. I-Ting’s story highlights the power sport has to transform lives and open up a whole new world of opportunities for people.
I-Ting was born with severe cerebral palsy. Her parents left her to an orphanage, leaving false names and contact information and vanishing from her life ever since. She was five. Given the illness, her arms and legs are severely atrophied, and she struggles painfully everyday with simple, easy moves such as eating, drinking and brushing teeth, which regular, healthy people take for granted. Her only wish used to be being able to grab food from the table and eat it on her own. Her wish finally came true when the orphanage ordered assistive devices for her when she got older. She grew more optimistic and confident after that.
Now in her late 20’s, I-Ting still has to attend a one-hour rehab session on a daily basis to loosen her muscles. At 10 a.m., a staff worker would push her in a wheelchair to the rehabilitation room. A therapist would then start pulling and stretching I-Ting’s arms and legs and she would furrow her eyebrows and have a painful expression on her face as the pain is so hard to bear. Next she would have to go up and down on a rehabilitation staircase over and over again to develop strength and balance. Finally, she would practice walking for 20 minutes on her own feet, an extremely exhausting endeavor for her. It takes all her energy to just walk a few yards.
When I-Ting was in junior high school, her therapist found that she seemed to be interested in Boccia. The orphanage soon made arrangements for her to practice in a makeshift court and she got into it in no time. Boccia is a sport that requires a high degree of concentration and muscular endurance; it is mentally and physically demanding. That is why I-Ting pours with sweat every time she practices. She practices at least two hours a day. When she is ready for action, she quickly locks her eyes on the balls like a cougar does it prey. With protective gears mounted on her left foot, she kicks one ball after another, although in a strenuously way.
Over the years, I-Ting has won many medals in local and national competitions. But she is not satisfied with her achievements. Her ultimate goal is to “beat the world’s number one Boccia player at the Paralympic Games.” That being said, she has never competed in any international Boccia event. In an invitational tournament held in Taiwan in 2019, I-Ting got so nervous competing with Japanese and Hong Kong players that she said her body stiffened that she could hardly move. Her coach said she needed more exposure to international settings. Now she is excited about her first international event: she will be attending the Bahrain 2022 World Championships in the BC1 category in November this year. Let’s all root for her!
13th July 2022 (blog special)
Lasse Kromann (Denmark) – There’s no place like home
This blog celebrates the 25th anniversary of the CPISRA Frame Running Development Camp & International Cup taking place in Copenhagen, Denmark this week. In this blog, Lasse shares his memories of the annual Camp & Cup in Denmark and highlights what makes the event so special.
Hi, my name is Lasse Kromann and I am a Framerunner from Denmark. In this blogpost I am going to tell you a little bit about what the Framerunning camp and cup is and what it means to me.
Where is home and where do you belong in the world? That is a question we often ask ourselves because we have to belong somewhere right? And when do you know when you have found home? For me I found my home when I first entered the door to the Framerunning camp and cup. When I first attended the camp and cup I had only been running for three months. I felt like Dorothy when she first got to OZ. At first, I was overwhelmed by the people who looked like me and competed at a much higher level. I remember breaking down because I did not like the sound of the starting gun (I still don’t like it). But unlike Dorothy I did not click my heels because this was my new home, I found my tribe. This was one of the first times I felt that I could achieve something.
To give you an idea about how the camp and cup is structured is that there is training for the first two days of camp. At the end of every camp there is a competition that back then only ran for a day (now it is running for three days). My first ever competition was a 1500 meter race, which thinking about it today, is insane. I wouldn’t recommend giving a 1500 meter, 800 meter and 400 meter a go in one day with only three months of practice. Be smart, don’t do what I did. But nevertheless I did it and I somehow managed to win two races and from then on I have competed internationally ever since. Even though I have competed in many international events including The WPA (World Para Athletics), European and World championship, the camp for me is the best event of the year. It is the best event of the year because it combines the element of fierce competition where there is the highest amount of athletes from around the world, with the element of social interaction with people all over the world. This is what makes the camp as special as it is. I have met some of my best friends on the camp and some of the best people I ever met from around the world on the camp. The camp has played a big part of shaping me into the person I am today. The camp is one of the most formative experiences you can be a part of as a Framerunner. It gives you a wider view of what the Framerunning community has to offer. It should be mandatory if you have the funds to do it – to at least try to visit the camp once as a rite of passage.
This year is the 25th anniversary of the camp therefore would like to raise a glass to everyone who made this camp possible. Without all of your contributions to making the camp happen we would not be here today. I would especially like to thank Mansoor Siddiqi for his time and effort into making this camp happen. I think it is important to note that Mansoor works year round on making the camp happen. He is always the first one to get up in the morning and the last one to get to bed in the evening. He has got the biggest engine and the biggest work ethic that I have ever experienced. I just want to say thank you to Mansoor, because I would not be where I am today, and we would not be where we are today if not for him.
To conclude I would like to go back to my opening question: Where is home and where do you belong in the world? We can define home in many different ways. I recently finished watching season three of the TV series POSE. POSE is about the ballroom scene in 1980-1990s New York under the AIDS epidemic. Many of the main characters in the show have to redefine what home is, because many of them don’t have a home, because they got kicked out of the community they are supposed to belong to. Therefore they form their own family and houses where they look out for each other for better or for worse. I am not trying to make a direct comparison to what the main characters in the show are going though. The only way they can survive sticking together through thick and thin and I am in no way comparing what I have gone through with what the main character is going through on the show because many of them are trans persons of color which is a whole other experience of life. The reason why I bring it up anyway is because many of us sometimes don’t really know where we belong in the world. And I think the camp can help people get together and maybe form a chosen family and find our own little corner of the sky. We may don’t have to redefine what home is entirely, but at the same time we don’t have to go back to Kansas because we may already have found our home here in the camp and as previously mentioned, there is no place like home.
If you are a Framerunner, I hope to see you at the camp this year or in the future
Best regards Lasse Kromann
13. juli 2022 (blogspecial)
Lasse Kromann (Denmark) – der er intet som hjem
Denne blog fejrer 25-året for CPISRA Frame Running Development Camp & International Cup, der finder sted i København, Danmark i denne uge. I denne blog deler Lasse sine minder om den årlige Camp & Cup i Danmark og fremhæver, hvad der gør begivenheden så speciel.
Hej, mit navn er Lasse Kromann og jeg er en framerunner fra Danmark. I dette blogindlæg vil jeg fortælle jer lidt om hvad FrameRunning Camp & Cup er for en størrelse og hvad den betyder for mig.
Hvad er hjem og hvor hører du til verden? Dette er et spørgsmål vi tit stiller os selv, fordi man skal høre til et sted, ikke? Og hvornår ved du hvornår du har fundet hjem? Jeg fandt hjem, da jeg for første gang trådte ind ad dørene til FrameRunning Camp & Cup. Da jeg for første gang deltog i campen, havde jeg kun løbet i tre måneder. Jeg følte mig som Dorothy da hun kom til OZ. Jeg var overvældet, da jeg så folk der lignede mig og da jeg så de mange dygtige atleter der konkurrerede på et højt niveau. Jeg kan huske, at jeg brød sammen på grund af den høje lyd fra startpistolen (jeg kan stadig ikke lide den). Men i modsætning til Dorothy klappede jeg ikke hælene sammen, fordi dette var mit nye hjem. Jeg havde fundet mit folk. Dette var en af de første gange, hvor jeg følte, at jeg kunne udrette noget.
For at give jer en ide om hvordan campen fungerer så er der træning de første par dage. Ved campens afslutning er der et stort stævne som tilbage da jeg startede kun varede 1 dag (nu varer stævnet 3 dage). Min allerførste konkurrence var en 1500 meter, som når jeg tænker på det i dag, virker vanvittigt. Jeg vil ikke anbefale en 1500 meter, en 800 meter og en 400 meter på en og samme dag med kun 3 måneders træning. Lad være med at gøre det jeg gjorde, tænk dig om! Men ikke desto mindre gjorde jeg det og vandt to løb og lige siden har jeg haft muligheden for at konkurrere internationalt. Selv om jeg har deltaget ved mange internationale stævner som WPA (World Para Athletica), europa- og verdensmesterskabet, er campen årets bedste begivenhed. Det er årets bedste begivenhed fordi det kombinerer hård konkurrence med et socialt fællesskab med hold fra hele verden. Det er det der gør campen så speciel. Jeg har mødt nogle af de bedste venner på campen og nogle af bedste mennesker fra hele verden. Campen har spillet en stor rolle i at forme den person som jeg er i dag. Campen er en af de mest formative oplevelser man kan være med i som framerunner. Det giver dig et større perspektiv for hvad FrameRunning er. En uge på campen burde være obligatorisk hvis man har økonomi til det – i det mindste en gang som en slags overgangsritual.
I år er det campens 25 år jubilæum, derfor vil jeg gerne sige tak til dem der campen mulig. Uden jeres bidrag ville vi ikke være her på campen i dag. Jeg vil især takke Mansoor Siddiqi for hans indsats for at få campen op at stå hvert år. Jeg synes, at det er vigtigt at pointere, at Mansoor arbejder året rundt for at campen til at blive til noget. På campen er han altid den første til at stå op og den sidste til at gå i seng. Han har den største motor og den største arbejdsmoral, jeg nogensinde har set. Jeg vil bare gerne sige tak til Masoor fordi jeg ville ikke være hvor jeg er i dag, og vi ville ikke være hvor vi er idag uden Mansoor.
For at konkludere på dette skriv, vil jeg gerne gå tilbage til det spørgsmål, som jeg stillede i starten. Hvor er hjem og hvor hører du til i verden? Hjem kan defineres på mange måder. Jeg blev for nylig færdig med at se sæson 3 af TV-serien POSE. POSE handler om ballroom scenen i undergrunden i New York i 1980 – 1990’erne under AIDS-epidemien. Mange af karaktererne i serien er nødt til at redefinere hvad hjem er, fordi mange af dem har ikke et hjem at komme tilbage til. Fordi de blev smidt ud af de miljøer som de burde høre til i. Derfor er de nødt til at forme deres egne familier og hjem, hvor de passer på hinanden i medgang og modgang. Det er vigtigt at konstatere, at jeg ikke prøver at lave en direkte sammenligning med hvad karaktererne i serien går igennem. De ting karaktererne er meget mere alvorlige end noget af det jeg personligt har gennemgået. For dem handler det om liv og død og mange af karaktererne er transpersoner af en anden etnicitet end hvid. Jeg kan og vil ikke lave en direkte sammenligning, da dette vil være ufølsomt. Grunden til at jeg alligevel bringer det op er, at mange af os ikke rigtig hører til i verden. Og jeg tror, at campen kan være med til at bringe folk sammen og måske danne en form for familie, hvor man selv vælger om man vil være med eller ej. Dermed kan vi finde vores egen lille hjørne af verden hvor vi hører til. Vi er måske ikke nødt til at redefinere hvad hjem er 100%, men samtidig er vi ikke nødt til at tage hjem til Kansas som Dorothy i Troldmanden fra OZ, fordi vi har måske allerede fundet vore hjem på campen. Som tidligere nævnt er der intet sted som hjem.
Hvis du er framerunner håber jeg på at se dig på campen i år og/eller i fremtiden.
Bedste hilsner Lasse Kromann
1st July 2022:
Tamsin Colley (Australia) – Para-Athletics has done wonders for my physical and mental health
In this blog, Tamsin reflects on her sporting journey so far and shares the positive impact para-athletics has had on her life.
Hi, my name is Tamsin Colley and I’m a 19-year-old track and field Paralympian from Sydney, Australia. I have Ataxic Cerebral Palsy and have also recently been diagnosed with Autism Spectrum Disorder (ASD) which was hard to pick up because of my Cerebral Palsy. I also enjoy advocating for a more inclusive world when I have time to make sure people with disabilities can receive the same opportunities in life as everyone else, especially the opportunity to experience the many social and physical benefits of sport.
I was diagnosed with Cerebral Palsy at the age of two after I had a brain tumour surgically removed at 18 months old. The brain tumour (a Juvenile Pilocytic Astrocytoma) was in my cerebellum, so the removal surgery left with lasting speech, balance and co-ordination difficulties. Through the Sydney Children’s Hospital and later the Cerebral Palsy Alliance, I was lucky enough to receive opportunities from a young age such as physiotherapy, speech therapy and occupational therapy. I used a wheelchair and walking frame up until age five.
My mum (Cathie Sherrington) comes from a physio background, so my parents were always looking for ways to keep me active and help my rehabilitation. They came across para sports such as athletics and swimming when I was 6 years old, and I instantly fell in love with the sport. I started competing at small disability meets then progressed through the school system when I was old enough. I made it to my first national athletics competition when I was 10 years old and set new meet records in all my events as a T36 classified athlete.
I competed in swimming, athletics, and cross-country for a few years and was competitive in all three disciplines until eventually I started specialising in athletics (partly due to my unstable ankles not being suitable for cross country and a wrist injury keeping me out of the pool for a while). We spent some time trying to find a coach that catered for athletes with disabilities, but we eventually found my current coach, Matt Rawlings, when I was around 12 years old. I have been training with him ever since and now I go three times a week to a grass track to train in a squad with athletes of all kinds of disabilities. I also now have a scholarship to the New South Wales Institute of Sport where I do gym sessions two times a week and other training at home.
Originally, my best event in athletics was the 800m, but due to the Paralympics not having that event for women of my classification, I had to retrain as a 200m sprinter which is one of the few athletics events for T36. I represented Australia for the first time at the age of 14 in the Rio 2016 Paralympic Games, having got my international classification earlier that year, making me the youngest competitor at those Paralympics. I was also the youngest ever Australian Track and Field Paralympian, which meant I got to meet the Governor General and have an interview with the oldest Australian Paralympian! I celebrated my fourteenth birthday in Rio two days before my race, and the Australian team threw me a surprise party which was a great way to make me feel part of the team! It was an incredible experience being in the village with athletes with all kinds of disabilities and I was so proud to be given that opportunity at such a young age. It was amazing being able to compete against athletes my own classification for the first time (in Australia we have multi-class events due to lack of participation) and I even raced against people from other countries almost three times my age in my event! I had the best start of my life at those Games and was on track to do a personal best time and make the final when I unfortunately fell over about 20 meters before the line in my 200m heat. I managed to pick myself up and finish the race, which I didn’t think much of at the time but people who hear of my experience in Rio tell me how much that demonstrates my resilience and the Paralympic spirit.
After Rio, I came back from an ankle fracture to win two silver medals in the 100m and 200m events at the 2017 World Junior Para-Athletics Championships in Switzerland. In 2019, I was a finalist at the Dubai World Para Athletics Championships in the 200m and came 8th in the inaugural 4x100m mixed universal relay. I just missed out on qualifying for the Tokyo Paralympics due to some health issues but am training hard to qualify the Paris 2024 Paralympics currently as well as the World Para-Athletics Championships before that! As I am writing this, I am preparing for the Oceania Athletics Championships in Mackay, Queensland which I got selected into the Australian team for the 200m in!
am so grateful for the opportunities I have been given to work towards my physical potential as well as compete on the international stage and have always wanted to give other people with a disability the same opportunity. This motivated me to organise a special needs athletics carnival in 2017, and it was great to see all the athletes with disabilities who came having a go at the sport and meeting new friends along the way! Currently, I am an ambassador for the Cerebral Palsy Sporting and Recreation Association in New South Wales and do some administrative work for them when I can fit it in around my training and university work! We organise multi-sport social days for people with disabilities in our series of CPSARA Connect events and have one coming up on the 17th of July which I’m looking forward to both participating and helping out at!
I absolutely love giving back to the sport that has helped me so much and witnessing the confidence that being included in sport brings to people with disabilities. My lifelong goal of getting more people with disability physically active motivated me to study Exercise Physiology at university, which I have always wanted to do and finally got in to after finishing my high school journey last year with a result of 90+ out of 100! I wish people would stop assuming that people with disabilities can’t succeed in school or university, as with the right supports, we are able to do more than other people think we are. At university, I am studying part-time with a reduced load to help me to manage the workload along with my sporting commitments and not be so behind due to my disability making me work slower than other people. I also much prefer learning online than in person as it allows you to learn at your own pace and avoid the over-stimulation caused by school or university!
I look forward to the rest of my university degree and I feel motivated to learn knowing it will help me pursue my lifelong dream of becoming an Accredited Exercise Physiologist to help more people with disabilities live their best lives and stay active. I honestly don’t know where I would be in life without sport, and it has made a huge positive impact on my life which I hope to help other people experience. The Paralympics and para-athletics competitions have given me something to strive towards and done wonders for my physical and mental health, so I would love to share my love of this incredible sport with the world!
Thanks for reading! If you’re interested in my journey leading up to the Paris Paralympic Games and beyond, you can follow me on Instagram (@tamsincolley) and Facebook (@Tamsin Colley PLY).
CPISRA is delighted to report Tamsin took Bronze in the 200m Para event at the Oceania Athletics Championships last month – huge congratulations Tamsin!
17th June 2022:
Irene Valarezo Córdova (Ecuador) – Sport has given me my life back
In this blog, Irene reflects on her relationship with sports growing up in Ecuador and shares how being supported to try athletics has transformed her life.
Hi. My name is Irene Valarezo Córdova, I am 30 years old, and I currently live in Quito, Ecuador. I am an internationalist and political scientist, a woman with Cerebral Palsy and people with disabilities rights activist. In addition, I am the only woman with Cerebral Palsy who does adapted running in my country.
I came into this world in an unconventional body, one that breaks all the rules and goes outside the box of normality, that moves differently and is full of involuntary movements, a body that has provoked astonishment and averted glances or compassionate glances.
I have always been surrounded by stereotypes and paradigms about what it means to be a “normal” person in a “normal” body. Many of these ideas were the arguments that the doctors used to tell my parents that “the girl will only live 6 months; and if she survives, she won’t be able to eat, she won’t be able to walk, she won’t be able to run, she won’t be able to have a “normal” life.
I did physical rehabilitation from a very young age, I learned to walk when I was 5 years old, but during breaks at school or in Physical Education classes, I used to sit on the bench because, according to the teachers, “I couldn’t play like the others” and I was in danger of hurting myself. I think that 15 or 20 years ago, in Ecuador, it was unlikely to imagine possible adaptations to make physical activities, games and sports for all children.
For a long time, the only physical activity for me was summed up in my rehabilitation hours. However, as I grew older, I realized that rehabilitation didn’t fill my expectations, it didn’t make me happy, it didn’t complement me as a person; and indirectly I felt that I was still approving the old medical speech that had seemed incorrect to me.
This nonconformity situation was my impulse to ask my physiotherapist to teach me to do something else. And I told her, “I need to feel free; I want to run. Please teach me to run”. So, when I was 23 years old, I started running around the park. A few years later, I realized that it was still not enough, and I decided to move up a level and find a coach who would exploit my full potential. So, since I was 29 years old, I run at a more professional level.
With my coaches, we have adapted all the exercises so that I can do them in my own way. Also, a year ago, I learned about the sports discipline called Race Running or Frame Running, whose focus is that people with Cerebral Palsy can run. This adapted sport consists of running with a tricycle without pedals, which is called Race Runner or Frame Runner and supports the upper limbs so that the person maintains their balance and can move their legs faster.
Now, I am looking to venture into Frame Running and with it, inspire more girls and boys with Cerebral Palsy to run, even if obstacles arise, even if everyone says it is impossible. Yes, it is possible, with the necessary conditions and adaptations that they really need to run as their way.
If you ask me, sport has given me my life back. Honestly, I never imagined being that woman with cerebral palsy who dares to run in this country, because they always told me that I had to walk slowly so as not to fall, literally. But here I am, convinced that we must learn to walk and leave our fears and then run to reach our dreams and goals.
Please, don’t you forget it:
I want to run!
Irene Valarezo Cordova
17 de junio de 2022:
Irene Valarezo Córdova (Ecuador) – El deporte me ha devuelto la vida
En este blog, Irene reflexiona sobre su relación con los deportes al crecer en Ecuador y comparte cómo el recibir apoyo para probar el atletismo ha transformado su vida.
Hola. Mi nombre es Irene Valarezo Córdova, tengo 30 años, y actualmente vivo en Quito, Ecuador. Soy internacionalista y politóloga, mujer con Parálisis Cerebral y activista por los derechos de las personas con discapacidad. Además, soy la única mujer con Parálisis Cerebral que hace velocidad adaptada en mi país.
Vine a este mundo en un cuerpo nada convencional, que rompe todas las reglas y sale del cuadro de la normalidad, que se mueve distinto y que está lleno de movimientos involuntarios, un cuerpo que ha provocado asombro y desvíos de miradas o miradas compasivas.
Desde siempre, he estado rodeada de estereotipos y paradigmas sobre lo que significa ser una persona “normal” en un cuerpo “normal”. Muchas de esas ideas fueron los argumentos que tuvieron los médicos cuando les dijeron a mis padres que “la niña solo vivirá 6 meses de vida; y si sobrevive, no podrá comer, no podrá caminar, no podrá correr, no podrá tener una vida “normal”.
Hice rehabilitación física desde muy pequeña, aprendí a caminar cuando tuve 5 años, pero durante los recreos en la escuela o en las clases de Educación Física, solía quedarme sentada en la banca porque, según los profesores “yo no podía jugar como los demás” y corría el riesgo de lastimarme. En realidad, pienso que en el Ecuador de hace 15 o 20 años atrás, era poco probable imaginar posibles adaptaciones para que las actividades físicas, los juegos y los deportes sean realmente para todos los niños.
Por ello, mi actividad física, por mucho tiempo, se resumió en mis horas de rehabilitación. Sin embargo, a medida que fui creciendo, me di cuenta que la rehabilitación no llenaba mis expectativas, no me hacía feliz, no complementaba mi persona; y de manera indirecta yo sentí que seguía aprobando un discurso médico que me parecía incorrecto.
Esta situación de incomodidad, de inconformidad fue mi impulso para pedirle a mi fisioterapeuta de aquel entonces, que me enseñe a hacer otra cosa. Y le dije, “necesito sentirme libre, yo quiero correr. Por favor, enséñame a correr. Y a mis 23 años empecé a correr alrededor del parque. Unos años después, me di cuenta que aún no era suficiente y decidí subir de nivel y buscarme un entrenador que me explote todo mi potencial. Así que, desde mis 29 años corro a nivel más profesional.
Con mis entrenadores hemos adaptado todos los ejercicios para que yo los pueda hacer a mí manera. También desde hace un año, conocí la disciplina deportiva denominada Race Running o Frame Running, cuyo enfoque se centra en que las personas con Parálisis Cerebral podamos correr. Este deporte adaptado consiste en correr con un triciclo sin pedales, que se llama Race Runner o Frame Runner y da soporte a los miembros superiores para que la persona mantenga su equilibrio y pueda mover más rápido sus piernas.
Pues sí, ahora estoy buscando incursionar en Frame Running y con ello, inspirar a más niñas y niños con Parálisis Cerebral a correr, aunque se presenten obstáculos, aunque todo el mundo diga que es imposible. Sí es posible, con las condiciones y adaptaciones necesarias.
Si me preguntan, el deporte me ha devolvuelto la vida. Sinceramente, nunca imaginé ser esa mujer con parálisis cerebral que se atreva a correr en este país, porque siempre me dijeron que debía caminar despacio para no caerme, literalmente. Pero aquí estoy, convencida de que primero debemos caminar para dejar los miedos y luego correr tras los sueños, las metas, los objetivos.
Y no olviden:
Yo quiero correr.
Irene Valarezo Córdova.
3rd June 2022:
Sampson Dzivor (Ghana) – Creating CP Football Opportunities in Ghana
In this blog, Sampson shares the impact football has had on his life and discusses his work as an Ambassador for CP Football in Ghana.
I quite remember back in my childhood where children used to wrap up different polythene bags to form a football to play on backyards. Especially, for most male children in my community, football was the favorite sport of all other. We all make ourselves dirty in sweat and sand to have the full joy of the sport.
However, as a person with cerebral palsy, my situation was much different from other male children. My level of spasms did not allow me with flexible muscles to carry myself along very well. I mostly fall and get hurt when even walking. You can imagine how running will look like. Initially, I used to get involved in playing football with my peers. I later realized that it was rather like me exposing myself to friends to be ridiculed and laughed. So I stop getting involved for some years. Within those years, I had loved imaging myself on the pitch playing football anytime my friends were playing from a distance. I was typically a virtual player then. Well, that seemed to make me feel better than getting worried that I can’t play.
With continued family support, medication, and exercises, I improved with my muscle tone. I can now walk without falling often and even run for some distance. You can guess, I’m ready to enjoy one of my favorite sports, right? Well, somehow yes because there were still many challenges.
Today, the story is different. As a CP Football Ambassador for Ghana, I have had the opportunity to play with other persons with CP. Sharing the similar challenges in football have boosted my confidence level, having no excuses or blames of myself. Societal awareness on CP is still low in the country. This has accounted in some challenges such as inadequate support from companies, parents’ withdrawal of their wards to partake in the CP football, and many others. Some groups once exploited some persons with disabilities in the past. Due to this, many no more have the trust to participate in a related activity of such. For me, I don’t see CP football as just for fun but also as a therapy as well. The more I play football, the more I exercise to improve my flexibility.
Despite the challenges faced, the management of CP Football is aimed at bridging the gap between discrimination and employment opportunities for young people living with Cerebral Palsy in Ghana.
(Ambassador, CP Football Ghana)
20th May 2022:
Wiktoria Mucha (Scotland) – My Frame Running Journey
In this blog, Wiktoria shares how she got involved with Frame Running and what the para-athletics event means to her.
Hello everyone, my name is Wiktoria Mucha I am a frame runner from Scotland training with Perth Strathtay Harriers. I have been taking part in athletics for 8 years or so, enjoying it ever since.
When I was younger I was always interested in sport , I took part in horse riding and dance, however I always liked to run, but due to my cerebral palsy I could not keep up with my friends or do the things they would do, until one day I came across a sport called frame running and decided to give it a try, and so at the beginning of high school I started frame running at Perth Strathtay Harriers and never looked back. It was one of the best things I have ever done!
Frame running means so much to me as it has given me freedom and independence which I wouldn’t have had if it wasn’t for the sport, I have met to many amazing people and made some lifelong friends along the way. I have had many amazing opportunities too, some of them was being part of filming a short video on inclusive athletics – the story of Perth Harriers and the clubs journey in making sure everyone is included in athletics or being a member of the Frame Running Scotland athlete committee.
I want to develop as an athlete, train hard and continue to progress so that one day I can travel the world to competitions and continue to have success. I have wonderful coaches who help me be the best I can be – THANK YOU! – as well as developing my own progress, I want to help others get involved in the sport and see them progress on to do great things! As part of this I have started to be involved in coaching at my club, as part of my future development plans.
This is my frame running journey so far and I can’t wait to see what the future holds!
I hope you enjoy finding out about my journey.
6th May 2022:
Beth Moulam (England) – Retired but still in love with disability sport
In this blog, Beth (Great Britain Boccia Paralympian) reflects on her recent retirement from boccia and writes about her love for all things sport.
Last month I retired from elite sport but already people are asking questions. In fact, questions that are often assumptions. It seems the assumption is that not playing on the international scene means I’m no longer interested in any sport. That boccia is no longer a part of my life. Or that I’m sat at home all day doing nothing and now I’m going to lose my fitness. These assumptions are so far from the truth it’s laughable (to me). I might be retired from the world class programme but I’m still in love with boccia, disability sport, competition, keeping fit, being active, opportunities for all and promoting health and well-being.
First, I’ve loved and lived sport from my earliest age. I wanted to be a Paralympian at 6. I found boccia at 10 and throughout my life I’ve been tried more sports than I can count. For over 17 years I was consumed by playing boccia and competing to the best of my ability. Without doubt my best life moment was going out onto the boccia field of play to compete for GB at the Paralympics in Tokyo (2021). The road to performing on a world class stage is not something that happens overnight, it takes dedication and commitment, resilience and flexibility.
Throughout school and then university I trained whenever I could. And, my training wasn’t just playing on court. There was plenty more; strength and conditioning, working with an elite support team including the psychologist, physios, nutritionist, lifestyle coaches and more. Getting to the top is a life choice, making decisions on a daily basis that will support you to achieve your goal.
In 2016/17 I had a setback in boccia when for medical reasons I could no longer throw a ball. Up until that point I’d worn a dynamic skin suit to given me the edge to control my release. Unfortunately, when I had to stop wearing the skins my body no longer had the physical strength and coordination to pick up a ball, never mind throw it. Who knew when I was prescribed the skinsuit what the outcome would be?
At that point I was happy to stumble across frame running, and in only a short time my competitive streak meant I was entering competitions. And, I even got to compete internationally. The future as a runner looked great, however, when I got re-classified as a BC3 ramp player in boccia, and GB started looking at me seriously I chose to remain in the sport I that was my first love. Mainly because I know frame running is something I will do recreationally for ever, down the street, around the track or on a beach.
In my book everyone can be active and I’d definitely recommend everyone tries a variety of disability sports. Of course, I’ve friends who say sport is not for them, that’s their choice. But, with boccia, frame running, athletics, power chair football, sailing, horse riding, skiing, kurling, table cricket, basketball, rugby and loads more, all with classification, and specific adjustments, there is plenty of choice. Not everyone wants to be, or can be, an elite athlete. Being active might be doing yoga, using a hand bike, playing on a wii or floating in a hydrotherapy pool. Each to his own.
My own life, mental and physical development is a testament to sport. I’m fit and healthy so why would I now just want to sit in my chair and let that wellbeing lapse. I still want the buzz of sport, the cardio effect, the stretching of my body, the good sleep at night and more.
Having witnessed the benefits firsthand I want others with disabilities to have the same opportunities. Through sport I improved my concentration and focus for my studies. I made friends, I increased my self-esteem and confidence. With the frame runner I became breathless for the first time ever. I want to promote that feel good factor, that everyone can experience those gains. In fact, having recently read people with CP are twice as likely to have heart problems as the general population getting active seems essential, and sensible.
I’ve watched and will continue to watch live disability sport when I can. I know first-hand the effort, the hours and the dedication required to get to the top and stay there. I appreciate the skill, the experience, and the supreme strategic and tactical knowledge of those at the top in boccia. I know being at an elite level is more than just time on a show court. It is also about the team behind the athlete and the combined effort to be the best you can be. I applaud this effort and dedication, especially in the light of knowing boccia was not sustainable long term for me on a full-time elite platform.
Boccia, and other sports, have made me who I am. I’m proud of what I’ve achieved and I’m physically stronger than ever before. I’ve learned a huge amount about myself and the benefit of having a growth mindset. The wish to have a go, treat life as an adventure and try to always do my best.
So, when I’m invited to talk about being a Paralympian, an AAC user and my dreams I can stand proud and shout about the fantastic opportunity I was awarded through sport. How dreams can come true if you work hard and show resilience. And, how being fit and healthy means an improved quality of life.
I might be retired but I’m still in love with the power of disability sport and what can be achieved. I’ll be continuing to seek out new, and old, thrills. Suddenly I’ve time to ski and I’m looking to ride again.
Each of us can work on reaching our own potential. As individuals we are all unique so whatever we achieve will be different for each of us, but still it should be rewarding. Good luck in finding your own sporting niche and being as active as you can.
Beth has quadriplegic cerebral palsy resulting in using a power chair outside her home. Due to dysarthria; muscle weakness of the mouth, tongue and throat, Beth uses an electronic communication aid. She also has a hearing impairment so wears hearing aids and lip reads.
Boccia is a seated target sport played indoors by athletes with the most complex physical disabilities. A BC3 athlete is unable to throw a ball, they propel the ball using a ramp and have an on court ramp operator. The operator is unable to look into the field of play and must not communicate verbally or non-verbally with the athlete during a match. They move the ramp and equipment under the direction of the athlete.
You can find out more about Beth on her website https://www.bethmoulam.com
18th September 2020:
“I never expected this when I was scouted 2016. I am proud to have achieved all this”
Elise van Es from the Netherlands, the T33 World Number 1, told us how she was introduced to wheelchair racing and about her journey with the sport so far.
My name is Elise van Es and I am 20 years old and I am from the Netherlands. I have cerebral palsy and a autoimmune disease. I started wheelchair racing in 2016. I came in contact with wheelchair racing on a paralympic talent day in 2016. I went there because I was no longer allowed to play wheelchair basketball due to a autoimmune disease.
On the talent day I was scouted for athletics and after three return days I was told in March 2017 that I was included in the Dutch talent team. Then I went to train once a month at Papendal and I also trained three times a week at my own athletics club. Once I got my own racing wheelchair, my times progressed so much that I was allowed to train once a week at Papendal, so my technique improved quickly. In 2018 I eventually trained three days a week with the talent team at Papendal.
With the talent team I went to the grand prix in Berlin and I was internationally classified as T33. At the grand prix of Berlin I won gold once and silver twice. Shortly afterwards I was invited by the English Athletics to participate in the Muller Anniversary Games in the Olympic stadium in London, here I was allowed to race against the top of the T34. This was the most fun moment in my sport so far. Now that I am almost four years further, I am Dutch champion in the 100, 200 and 400m and I have Dutch records in the 100, 200, 400 and 800m. In 2018 and 2019 I was number 1 in the world rankings in my T33 class.
I never expected this when I was scouted 2016. I am proud to have achieved all this. In addition to wheelchair racing, I now also do shot put and I hope to achieve good results in this as well. I wonder what the future will bring for me because my ultimate goal is to one day reach the paralympic games.
29th January 2020:
“My entire life has revolved around sports”
Ryan Cadres from Massechusetts, USA, tells us how sport has shaped his life
I am a 42 year old with Cerebral Palsy and live in Massachusetts. My entire life has revolved around sports. As a youngster I was an okay athlete, playing soccer, basketball, and baseball. However, as I got older my peers started to get bigger and stronger and it was becoming more and more difficult to compete at the level I wanted to. Therefore, it was time for me to find a different avenue when it came for my passion of sports.
I spent my high school years as the team manager for both the football and basketball teams. As I transitioned into college, I continued to help out my high school football and basketball teams. This lead to my first high school coaching job as the Freshmen Basketball Coach at Whitman-Hanson Regional High School in 1999 at the age of 20. While I only spent two years in that position, that lead me to being an Assistant coach for 4 different area high school football programs from 2002-present.
I have also coached high school baseball since 2004. Although I love coach, my passion is officiating basketball. I have been a member of IAABO Board 54 since the year 2000. I have officiated numerous level of basketball, ranging from 3rd and 4th grade recreation basketball, to premier travel leagues, to high school basketball as high as the varsity level. I have officiated numerous State Tournament games and was an alternate at the TD Garden in Boston, Ma in 2015. While, I may not compete like I once use to unless it is on the golf course, I have found a way to keep involved in sports and don’t let my Cerebral Palsy define me.
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!