The Reality of Quadriplegic Cerebral Palsy & Acute Retinal Necrosis – Guest Post by Emma

Emma’s guest post is the 31st post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Emma!

Hi, my name is Emma Purcell and I’m a 25-year-old blogger, freelance writer and journalism graduate from Hampshire. I currently live in Alton but was born and raised in the area of Portsmouth.

My Story

I was born with Quadriplegic Cerebral Palsy and became registered blind at the age of 11. I have a passion for writing and music and my dream job is to become a music journalist. I first began to publish writing in 2012 as a contributing writer for the online magazine, Disability Horizons. Seven years on, I’m now a full time member of the voluntary team, writing frequent news stories, featured articles and interviews.

After graduating with a 2:1 in journalism from the University for the Creative Arts in 2016, I spent 18 months trying to secure employment with no success. In November 2017, I decided to start blogging and in December 2017, Rock For Disability was born. I publish two blog posts a week; Music content on Mondays and Life & Disability content Fridays. Plus I share my freelance work from Disability Horizons and AccessAble, who I also work for as Hampshire Champion.

Quadriplegic Cerebral Palsy

When I was born, I was ten days late and came out not breathing. The first year of my life, I was in and out of hospital with seizures and other complications. At 13 months old, I was diagnosed with Quadriplegic Cerebral Palsy (CP). This is a condition caused by brain damage and affects my mobility in all four limbs. Some forms of CP can affect people’s mental abilities too, but luckily for me, it only affects my physical abilities. With my form of CP, I cannot walk or weight bare, I have poor posture in my pelvis, hips & spine and unable to use or control my right hand at all.

Acute Retinal Necrosis

Acute Retinal Necrosis is an eye condition which is caused by a virus in the retinas. When I was eight years old, my Mum discovered my right eye looked very sore and bloodshot. I got my GP to have a look and he immediately referred me to the hospital. After several weeks of tests in my local hospital and specialist hospitals in London, my vision had gone. I was told my retina had detached and there was nothing to cure it.

Three years later, I woke up feeling discomfort in my left eye. I immediately went to the hospital and they diagnosed me with the same virus. Luckily they caught it early enough to save some of my vision.

After a biopsy to confirm the diagnosis, they inserted an oil bubble (don’t know the medical term) to hold the remainder of my retina in the left eye. This does cause more blurred vision. Plus a foggy calcium build up appears on the surface of my eye causing even more blurriness and discomfort. Therefore every 1-2 years, I have a procedure to remove the calcium build up. Unfortunately this can cause damage to my cornea, meaning, potentially one day, I may need a cornea transplant.

17 years on, I’m now classed as registered blind with light perception in my right eye and approximately 20% sight remaining in my left eye. I would describe my vision in my left eye like looking through tracing paper. I can see shapes and colours but no detail.

Learning to Adapt

With my CP, I use an electric wheelchair, have full-time carers who hoist, dress, wash and shower me, have a profiling bed and a shower chair.

With my sight loss, I have prescription glasses that help slightly. I heavily rely on technology to carry out tasks. I have a laptop with ZoomText software, an iPhone & iPad where I use the accessibility features including; Voiceover, Zoom, Large Text & Smart Invert, an Amazon Alexa and a Samsung Smart TV.

I cannot go out independently due to my poor vision and on many occasions, I rely on family, friends or carers to drive my wheelchair in bright, dark, crowded of unfamiliar places.

Changing as a Person

Because I was born with my CP, I don’t know any different. Although not being able to walk and do certain physical tasks can be frustrating. I guess life became more difficult and changed my way of living when I lost my vision. As a child, I could read & write, draw pictures and drive my wheelchair independently.

Now my vision is gone, I’m more dependent on sighted people, can no longer do things I could do before and find social situations more difficult when it is too dark, loud or crowded.

The hardest thing of all is knowing I will never be able to drive a car. As a kid, I saw stories of wheelchair users having these fancy adapted cars and looking forward to the day I would get one when I grow up. Now that dream has been taken away from me forever.

In addition, since leaving university and trying to adapt to adulthood as a disabled person, I have been struggling with my mental health too. I’ve been on antidepressants for 3 years and last year completed cognitive behavioural therapy treatment. Things have improved in the past year but do still have the odd bad or stressful day.

My Favourite Superhero

My favourite superhero has to be Dobby the House Elf from the Harry Potter series. Harry Potter is my all-time favourite book and film series and Dobby is my favourite character. He literally rescues Harry and his friends on several occasions and is so cute, adorable , funny and friendly. I was heartbroken when he died and if I ever got the meet the author, J.K Rowling, my first question to her would be “Why did you kill off Dobby?”

Thanks Emma for sharing your story with my readers and me!

If you would like to stay up to date with Emma, then you can find her on Facebook, Twitter, and her blog, Rock For Disability!

One thought on “The Reality of Quadriplegic Cerebral Palsy & Acute Retinal Necrosis – Guest Post by Emma

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