Living a Blessed Life with Cerebral Palsy

October 14, 2022
Toni-Marie smiling with volunteers at the Sandpipers centre

Hello Readers! My name is Toni-Marie. I will tell you just a little bit about my disability as I feel it is relevant. I have cerebral palsy quadriplegia and scoliosis of the spine. This means I am a full-time electric wheelchair user.

Toni-Marie guest blogger Revitalise

Celebrating World Cerebral Palsy Day

6 October was World Cerebral Palsy Day and by its very existence, we should celebrate this day. This social movement was created by the Cerebral Palsy Alliance (Australia) and the United Cerebral Palsy (USA) in 2012.

World Cerebral Palsy Day brings together people affected by Cerebral Palsy and their families, organisations, service providers and research institutions who are committed in their desire to support those who, like myself live with the condition.

In fact, I am 1 of 17 million people in the world who live with Cerebral Palsy. There are several types of cerebral palsy. Each case is unique to the individual and therefore the condition can manifest itself in a variety of ways.

Striving to Embrace my Disability

At this point I would like to say that I strive so hard to embrace my disability. And yet I perhaps strive even harder never to be defined by it.

Medically, as far as I am concerned, it is what it is. However, I am much more willing to talk about how it can affect the day to day lives of so many. And I will talk openly about it for one reason only. And that is – in the hope that through my sharing a far greater knowledge and understanding of the condition itself – a wholly inclusive society can continue to be built on a foundation of acceptance and kindness, regardless of exactly how each individual and their families are affected by the condition.

Challenges of Living with Cerebral Palsy

I will now try to give you just a little insight into how Cerebral Palsy and Scoliosis physically affects my daily life. My account might help you understand the challenges people living with cerebral palsy face in their daily lives.

I need maximum assistance with all aspects of personal care on a daily basis. By this I mean total assistance in showering, washing, dressing and preparing for the start and the end of each day. I require help in performing any and all practical daily living tasks along with complete assistance with transferring, repositioning and managing the total well-being of my body.

Scoliosis can affect breathing, the heart and internal organs. I choose to manage each of these things by never denying their existence, and yet knowing exactly when I need to bring them into my own sharper focus and seek extra help.

I’m sure that everyone with cerebral palsy or scoliosis will tell you that physically their disability is definitely affected by:

  • Muscle tone
  • Pain
  • The weather
  • Energy levels
  • Quality and duration of sleep

Please bear in mind that the above list is in no way exhaustive.

My top 5 Tips to Overcome the Challenges

Here are just a few ways that I help myself to combat these:

— By recognising and respecting my own physical limitations, and if at all possible getting a gentle massage.

— Learning to manage my pain by using distraction techniques such as meditation, phoning friends, reading or watching a film. And using each of these techniques to help support the use of any medication that I may need. (Read through my recommended list of films and theatre shows here.)

— I think that temperature is a defining factor in how someone feels with cerebral palsy and/or scoliosis of the spine. I often adjust all of my activities according to the weather.

— The key to my being able to enjoy an activity is preparation. This ensures that all of the finer details are managed beforehand.

— The quality and duration of my sleep can also affect me in so many different ways. I will often assess it on a daily basis and I seldom arrange to do things last minute.

— I carefully manage my energy levels so that I am able to do all the things that I have to do on a daily basis, as well as maybe one or two things each day that I really enjoy doing to help others or simply just for myself.

Not Letting the Disability Define me

The key to embracing any kind of disability is an acceptance that goes far beyond what you see physically. It is also about learning to live in the moment and appreciating even the smallest of pleasures.

As I mentioned earlier, I never let my disability define who I am and the essence of this is captured in this one event:

Many years ago I was speaking to a group of students about what it was like to live with my disability. I opened up the forum for questions and one young lad was brave enough to ask me “if I prefer to be known as disabled or handicapped…” Quick as a flash I replied, “Just Toni-Marie will do!” At that very moment we exchanged a smile! And I knew that my answer had taught him so much. I am passionate about so many different things in our world today – my disability is just a small part of that!

There is no question that disability can take you on the toughest journey of your life at times. But there is help out there – you just need to be strong enough to recognise that getting the help as a sign of strength.

Take the time to get to know the person beyond their disability  and I promise you that you will be both educated and enriched beyond your own expectations.

Thank you to Francesca Martinez (comedian, speaker, actor and writer), Rosie Jones (comedian, writer and actor) and David Smith MBE (British Paralympian) for demonstrating that anyone can follow their dreams – disability just maybe makes it a little more interesting!

For help and advice please contact Scope’s helpline on 0808 800 3333.

Always see your ability in disability! Be proud!

Thank you for reading!

Toni-Marie x

Disclaimer: The views expressed are the author’s own.