Living with my disabilities

I thought I’d make my first blog of 2018 give an insight into my disabilities and how I live with them.

I was diagnosed with quadriplegic cerebral palsy (CP) at 13 months old. For those of you who may not be familiar with cerebral palsy, it is a neurological condition where connections in the brain are broken causing lack of movement, balance and co-ordination. In some cases it can effect communication, speech and language and develop a learning disability too.

In my case, it only effected my physical ability. Quadriplegic CP means all four limbs are affected. For me, I’m in a powered wheelchair, cannot stand or weight-bare at all and need hoisting for all transfers. My right side is weaker than my left. My spine tends to “flop” to the right, I’m unable to control, move or use my right hand and do all tasks with my left hand.

In 2002, I had hip surgery to make my legs open up easier. They made an incision in my groins then plastered me for hip to toe with a bar in the middle to hold my legs open for 6 weeks. The following year my left hip became dislocated and had to have additional surgery to put the bone back in place. They broke the bone the inserted a metal plate and pins. Since then the bone has dislocated again but amazingly I’m not in much pain so the consultant decided to leave it. Unfortunately, both surgeries have left me more immobile. Before I could do “rollie-pollies”, cross my legs on the sofa or floor like kids did at school and do bridges lying down. It later turned out that both surgeries could have been prevented if the doctors, physiotherapists and occupational therapists had told me to lie on my back in bed with a sleep-system throughout childhood rather than on my side. It is disappointing to think that if I was told this before, I could still be as active now as I was as a child and not had to suffer all this pain.

Just when I thought the worst was over and I could enjoy life again, another tragedy struck; I lost my eye sight in my right eye. It began as being a bit sore, itchy and red. I saw my GP who immediately told me to go to the hospital. I went to the emergency eye department and after numerous tests was told I had a virus in my retina. In the following weeks I had several appointments at Great Ormond Street Hospital but it was too late to save the vision. Having the use of one eye was strange to begin with but got used to it soon enough. I completed my time at primary school and moved onto secondary school. Three weeks into my first term of secondary school, the virus then decided to attack my left eye. It began with pain and as soon as I felt it I went straight to the emergency eye department. I was referred to St Thomas’ Hospital in London and had a biopsy done to confirm it was the virus again. Luckily they caught it early enough to save some sight. In 2007, I was fitted with an oil bubble that would hold the retina in place, securing the vision that is left. Unfortunately that does cause a foggy calcium build up on the surface of the eye which causes more blurred vision and discomfort. Every couple of years I have treatment at Moorfields Eye Hospital in London to remove the calcium build up. However it does begin to re-appear in a matter of months. Moreover, this treatment does cause me to loose sections of my cornea. Therefore in the next 5-10 years I may need to have a cornea transplant.

The official name of my eye condition is Acute Retinal Necrosis. I have light perception in my right eye and approximately 30% vision remaining in my left eye. I wear specialist prescription glasses which improves my vision in my left eye slightly. The vision in my left eye is like looking through tracing paper. On an eye test I can just about pick out the top letter with my glasses on. When reading books or paper I need font size 36 – 48 which does take up a lot of pages. A majority of my work and pleasure I rely on audio and magnification software. I have a Windows laptop where I use thee accessible magnifier and also Zoomtext software. I have an iPhone and iPad where I use the accessible Zoom, Invert Colours and Voiceover features. I have an Amazon Echo Dot that can speak to me; tell me the time, give me reminders, play music or the radio, read audiobooks and play games. My favourite game is The Magic Door, a fictional adventure game with various challenges. It is like computer game made for blind people. I also have a talking microwave who I named “Arthur” and a liquid indicator to help me make drinks. In addition, I have a talking freeview box that reads out the TV guide, can record programmes and enable audio description.

The hardest part of being blind is communicating with people and accessing the community. I find it extremely frustrating when people say this, that, here & there when I can’t see. Plus trying to interact with large groups of people (e.g in a classroom). I can see bodies but not features of people so cannot identify them or see if they are waving or smiling at me and I come across as ignorant. Also when walking through town I need to be accompanied by a carer, friend or family member. In a majority of occasions, I need somebody to drive my wheelchair for me when in bright, dark, crowded or unfamiliar places. About 5 years ago, I attempted using a cane but because I drive my wheelchair with my left hand and can’t use my right hand, it was too difficult to control my wheelchair and hold a cane. I also tried a symbol cane which is a smaller one that signifies I’m blind but there were still rude and ignorant people in town who had no idea what it was. Moreover, after loosing my sight, I was devastated that I would never be able to drive a car. I knew there were notability vehicles with amazing adaptations for physical disabilities and grew up dreaming of me driving one day but was heart-broken when I became blind. Now I have to rely on carers, friends and family to drive me. My hope is self-drive cars arrive in the regular market and all blind people wishing to drive get first pick.

My next mission in improving my independent lifestyle is to try and get an assistive/guide dog. I’ve always loved dogs and dreamed of having an assistant dog. When I was 12, I did look into it but at the time they couldn’t provide a dog that could assist me with my physical disability and vision impairment. However, more recently, they have begun to train dogs in both disabilities. I did contact two charities last year but they said they have an overload of applicants and to try apply in 2018. It is not certain I will be eligible for an assistant dog but am willing to pursue the opportunity – fingers crossed!

I believe my disabilities do not stop me completing any goals or dreams. My only prevention is not having the suitable access, adaptations and support. As long as I have everything and everyone I need to help me than I’m able to do anything!

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