Another year, another celebration day approaching. Something which used to make us run for the hills – obviously not literally. Something which would have us subconsciously quaking in our boots – literally; nine times out of ten we’d fall over. I never saw the point in celebrating World Cerebral Palsy Day. Why would you celebrate your disability on 6th October? Having CP isn’t something to get the banners out for. Don’t get me wrong, I didn’t mind having you as part of me; we were stuck with each other anyway, so neither one of us could mope about it. It was what it was and all we could do is play the cards we were dealt. But there was no need to make a song and dance about it. You gave me to left, dysfunctional feet anyway.
I always thought I was okay with you. Out of everything, you were the one thing I’d 100% accepted. I’d laugh at the ridiculous situations you put me in; like the countless times we’ve not quite made it to the toilet, or the times we’ve been stranded in the most peculiar places. No two days were (and are) ever the same and you made my life more than a little bit interesting. We’ve created a backlog of tales which started with the line; “The one with…” and ended with a catastrophic disaster. The basics in daily living are things you managed to make difficult. On how many occasions have we found ourselves with our head in the armhole as we get increasingly tangled up in a jumper? We get out of bed every morning and are never quite sure whether coordination and mobility have left the building. And we’re the messiest eater the world has ever seen.
These are trivial moments. The ones we laugh about as we’re lying on the floor after another manoeuvre went wrong. In all honesty, though, I think I spent many years feeling bitter towards you. I wanted to be a ballet dancer when I grew up and you made that impossible. You made it so much harder to fit in because people always saw the wheelchair before they saw me. The amount of energy I’ve spent trying to break through those barriers with you dragging me down is unreal. I had to have someone tag along with me because there’re steps and inaccessible toilets everywhere. Just hanging out with my friends had to be thought out in advance due to care schedules and logistics. Essentially, doing what I wanted to do was a no-go.
It was all so draining. Gradually you wore away my sanity, stole my potential and fed from my creativity. But what could I do other than smile, get on with the show and avoid anything you had to offer?
Last year, it all came to a head. For sure, the route I had chosen to take was at least in the realms of where I needed to be, but still. I inevitably reached the same tedious, impassable road. In turn, I experienced what I now refer to as my quarter-life crisis. The world was going to end, and I didn’t know what to do about it – we’ve always been dramatic! Everything I’d tried in the past hadn’t worked, so the only thing left to do was to stop.
It was during my month-long life sabbatical that I had an epiphany. In my mind, I had two strengths to work with. The first was that I could string a sentence together. The second was you. As much as I’ve just moaned about you, CP, I can’t deny that you’ve given me an outlook on life which is unique. Why not combine the two? What did I have to lose?
As I wrote, I gained a sense of control I hadn’t had for the best part of a decade. With every Written Wheel blog, in which I told the craziest tales, came a freedom and with this came a creative spark that rapidly grew. A few months down the line and I had a new-found confidence, independence and desire to achieve. I knew I had the foundations of something special and I was excited to see where that would take me.
And then the doors of opportunities flew open in their dozens. From business ventures, to job offers, to working with charities that have great potential – it was all mine for the taking. I’ve met some amazing people with a drive to make a difference who have given me their wisdom and enabled me to do the same. Without wanting to sound too hippy, the stars are aligning and living with you, CP, has never been better.
What a week it’s been for us here at the Lincolnshire Cerebral Palsy Society. Last week saw our 65th AGM which marked the long reign of our charity and all its previous guises. In turn, yesterday saw us crack open the coffee beans in celebration as we hosted our first Coffee Morning in Lincoln City Centre. We’re so proud of how far we’ve come, and we’re excited to see what the future holds.
Wednesday 24th July was the dawning of a new era for Lincolnshire Cerebral Palsy Society when we held our first AGM under the new and improved title. The charity, which had up until recently, only helped those who lived in North & North East Lincolnshire, decided to drop the tongue-twister in September 2018. In spreading our wings to incorporate the whole of Lincolnshire, we feel we are more able to reach the people at the core of what we do – those affected by Cerebral Palsy.
The Society wouldn’t have been able to survive so long without unwavering support and realised potential. However, we recognise that the needs of our clients change and evolve in accordance with the services provided across Lincolnshire. We’re also aware for the charity to evolve and develop, our relatability to the outside world is key. This is why at the recent AGM we created new roles for our members. BBC Look North’s Phillip Norton was unanimously voted into the position of PR/Communications Manager as well as being elected as Trustee.
Regardless of whether an organisation has been running for 6 years or 60, some things will always stay the same, and fundraising is every charity’s bread and butter. We’re planning a fun event for every volunteer to get involved in. Is skydiving your thing? Or perhaps a picturesque stroll as you complete the Spires and Steeples Challenge? Or do you prefer a civilised and leisurely luncheon. No matter what your cup of tea is, we’d love to have your support – just go to our ‘Get Involved’ page to find out how.
Speaking of volunteers and tea – well, coffee to be precise. We had a fantastic morning yesterday. Thanks to Lincoln Drill Hall for letting us takeover their café we were able to have a hang out with some old friends and make some new ones. From our Patron and Professional Golfer, Ashton Turner, to university students, to Healthcare professionals, they were all taking an interest in our small, but powerful cause. In the hope to connect and collaborate with as many people as possible, we’ll be arranging regular coffee mornings, so keep an eye on our website and Facebook page. Who doesn’t love a catch-up with cake?
We’re looking forward to what lies ahead and we can’t wait to take all our fantastic supporters along for the ride. 65 years ago, Lincolnshire Cerebral Palsy Society was founded to enhance the lives of people who were affected by the condition and this is something we still strive for today. With a little help from our friends, we think 2019/2020 will be our best year yet!
Photo credit: Oliver Howard
Hello and welcome...
The charity has been established for almost 65 years. But what is its mission? Well, they aim to lend a helping hand to those who are affected by Cerebral Palsy (CP). With a wealth of knowledge and experience that has been built upon since 1966, it’s safe to say Lincolnshire CP Society is the one-stop shop if you’re in need of advice, services or grants.
I know what you’re thinking; “That sounds great, but what on Earth is CP?” It’s a very good question, and luckily for you, it’s one I can answer. To use my own terminology combined with my specific circumstances, CP means I require a wheelchair to get around. It also means I only have one functional arm – the left one is about as much use as a chocolate teapot. I’ve had the disability since birth and although it isn’t degenerative, it’s not going to go away, which is okay because at least I know what I’m dealing with. On a daily basis, I need assistance with pretty much anything physical; getting up, going to bed, meal preparation, washing, dressing and getting from A to B.
But that’s just me. CP affects approximately 1,700 people per year in the UK and the condition affects everyone differently, partly because there are three subtypes, but also because the disability’s spectrum is so vast. However, certain aspects and traits can be pinpointed: CP is caused when abnormal development in the brain occurs at a crucial stage. This can happen whilst a baby is still in the womb, during birth or weeks/months into infancy. Why? There are several factors that can lead to the condition, including; lack of oxygen to the brain, premature labour, meningitis or a serious head injury. As a result, muscle tone and movement are compromised, alongside coordination, control, posture and balance.
One of the difficulties in receiving a diagnosis of CP is its symptoms aren’t immediately noticeable, although, signs are likely to become more prevalent with the first year of a baby’s life. For example, if there is a struggle with muscle weakness or tightness or a delay in critical milestones, such as sight, speech or feeding. But when you have a diagnosis, where do you turn?
Lincolnshire Cerebral Palsy Society will be there in your hour of need. They seek to help with whatever you may require, whether this be treatment, education or training. It is also understood that daily living for someone with Cerebral Palsy can be costly, and so they endeavour to support you financially by offering grants and donations for equipment or otherwise. In my view, most importantly, the Society cooperates with local authorities and organisations to raise awareness and improve services accessed by people with CP.
Lincolnshire Cerebral Palsy Society is a truly great charity and it has the potential to evolve you’re your help. To get involved or to be up to date with the latest news and events, please visit this website as much as you can. You'll be able to get in contact and find support as well as staying up to date with the latest news and events. Check out the Facebook page too.
Jo is a blogger and writer who lives with Quadriplegic Cerebral Palsy. She has recently become a Trustee for us and is keen to raise awareness of our work. Jo has a passion for helping anyone with the condition and has a desire to make a difference.