Katherine’s guest post is the 52nd 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.
Hi, I’m Katherine, I’m 38 and I was born in Kingston upon Thames in England. I love listening to music, working on my blog reading books and I love to learn, so I’m always searching for new things to learn about online. I’m also fluent in Spanish. I have a passion for fashion and beauty..
I was born very prematurely at 29 weeks, and I have Cerebral Palsy, Hydrocephalus with a VP shunt, and 4 vision impairments – Nystagmus, Hemianopia, Squint and Astigmatism.
My official diagnosis, since I was 2 weeks old, is Spastic Quadriplegia with Hydrocephalus (my hydrocephalus was diagnosed by a CT scan when I was in the NICU after a grade V (severe) bleed on both sides of my brain). This, plus my premature birth and lack of oxygen was what caused all my disabilities. The diagnoses could not come sooner than that because I was in the NICU on life support. Once I’d won my first battle of survival and could breathe on my own, my disabilities were obvious.
I was born with my twin sister, Natalie, who sadly did not survive the complications of our premature birth, but is in my thoughts every single day of my life. I can’t choose just one of my disabilities to focus on in this post because they are all a part of me and make me who I am, so I’ll talk about all of them.
Cerebral Palsy is a neurological disability in which damage occurs to a baby’s developing brain before, during or after birth. It affects 17 million people worldwide (1 in 400 children in the UK) and is the most common physical disability in childhood. There are 4 types:
- Spastic (stiff or tight muscles)
- Athetoid (continued writhing or twisting body movements)
- Ataxic (difficulty with coordination and balance)
- Mixed (a combination of 2 or more types)
Cerebral Palsy mostly affects movement and voluntary muscle control, so it can affect anything a person does, for example, sitting, standing, walking, speaking, and the ability to carry out day-to-day tasks such as dressing, holding things or eating and drinking, etc.
The brain injury that causes CP can occur in any part of the brain, some examples are the cerebellum, occipital lobe or basal ganglia. Another cause is placental abruption and sometimes there is no known cause at all.
When CP is described, the first word (e.g. Spastic) refers to how movement is affected and the second (e.g. quadriplegia) refers to how many limbs are affected. This can be anything from one body part (monoplegia, e.g. a hand), through to 2 (diplegia, e.g. legs with mild affects in the arms), 3 (triplegia, e.g. legs and one arm), or 4 (quadriplegia, e.g. legs, arms and trunk).
Hydrocephalus is a neurological disability where cerebrospinal fluid (CSF), which bathes the brain and spine, cannot be regulated by the body so that it is absorbed into the bloodstream properly. CSF is important as it protects the brain and spine from damage, removes waste products from the brain and gives the brain the nutrients it needs to function properly.
There are a few causes, such as:
- Differences in the way the brain develops
- Failure of fluid absorption
- Damage to brain tissue, e.g. by a head injury, haemorrhage, infection or blockage.
These lead to the cerebrospinal fluid building up inside the brain, and can cause a skull deformity and brain damage. Symptoms can include nausea and vomiting, dizziness, and blackouts or seizures. Some people experience confusion or short-term memory difficulties. It can affect concentration too.
Nystagmus is a vision impairment in which the eyes make repetitive, uncontrolled movements. The symptoms include involuntary eye movements (side to side, up and down, or circular). Nystagmus can reduce a person’s vision and depth perception, and can affect balance and coordination.
Hemianopia is blindness, in half of the visual field. It is caused by brain damage and damage to the optic nerves, which carry visual signals from the brain to the eyes. There are different types and it can be temporary or permanent.
Although the main symptom is vision loss in half of one or both eyes, other symptoms can be distorted sight, double vision, difficulty understanding what you’re seeing, as well as decreased night vision, moving the head away from the affected side, or visual hallucinations.
A squint (also called strabismus), is a condition in which the eyes do not align properly because the muscles that control the movement of the eye, and the eyelid, do not work together, which means both eyes are unable to look at the same spot at the same time.
This is a common vision impairment that occurs when the cornea (the clear front cover of the eye) is irregularly shaped, or can sometimes be caused by the curvature of the lens inside the eye. The common symptoms are blurred vision (at any distance), eye discomfort, and headaches.
How My Disabilities Affect Me
Cerebral Palsy affects all of my limbs. It affects my trunk stability and sitting balance, so I slump forward or lean to my left side when I sit. It also affects my overall strength and endurance for any type of activity, which makes me become tired quickly. Tiredness or exertion can cause muscle spasms to worsen and let me tell you, muscle spasms are VERY painful and it is scary not being able to control them. Even when I’m not tired, the intensity of them has me in tears, and they can occur any time.
The damaged areas of my brain are:
- The cerebral cortex – the area controlling my body’s movement.
- The occipital lobe, at the back of my skull – which controls everything to do with vision, depth perception and visual memory.
- The parietal lobe – which is where the senses and the body’s sense (of where the body is in relation to it’s surroundings) are controlled.
Very bad spasms can actually send me to sleep or make me very drowsy. But Alfredo keeps me safe with hugs until it passes. He is very conscious of putting pillows around me so I do not hurt myself, sometimes I have had impressive bruises afterwards if I have!
I require permanent support from others in everything I do. I require someone with me to physically drive/guide my wheelchair. They have to be able to do this, and be aware of our surroundings for me, as I am unable to react quickly and precisely. As well as be aware of my needs.
My muscles have limited range of movement and stretching ability, so I rely on someone to help with moving and stretching. Even then, that is painful so exercise is a double-edged sword – necessary but leaves me in more pain and exhausted. Massages are great afterwards!
The permanent tightness makes me feel like my body is locked in a vice and my limbs alternate between feeling heavy and feeling detached from my body. When I am exhausted, I cannot move anything but my head and even speaking becomes an effort. I’m in pain daily and take medications which are Baclofen, a muscle relaxant and Tramadol which has muscle relaxing capabilities but is meant for moderate to severe pain. I also have urinary incontinence for which I use specialist products.
Aside from pain, stiffness and discomfort, I have circulation problems in my hands and feet which are almost always cold except on very hot summer days. I feel the cold easily and in winter I rely on hot water bottles, fleecy PJs and lots of blankets. I cannot regulate my temperature to get warm and this worsens pain and stiffness.
Judging hot and cold is difficult, risky and dangerous such as when I’m showering, I love hot water but I don’t realise the water is too hot until my skin is red. I once had a sensitivity test done from the top of my back to my toes by a physiotherapist who noticed that I have some areas I can feel, some I can’t and some where I just won’t answer if asked as I’m not sure if I can feel them or not.
I also have Scoliosis (curvature of the spine, and Lordosis (a larger inward curve in my lumbar area). This causes me to not be able to sit straight or back enough in my wheelchair. I have hip deformities which mean my hips are partially dislocated and I have a pelvic obliquity deformity which means that I have one leg about 1cm shorter than the other.
The deformity of my hips and all this together make my feet and legs turn inwards. I have high foot arches which cause pain and spasms. The foot deformities I have are common with CP, and my left foot is in a fixed inward contracture from the ankle downwards. The leg length difference has lessened as I’ve grown as it used to be 3cm when I was small.
The type of Hydrocephalus I have is acquired because of a brain bleed I had as a baby. My symptoms of shunt blockage, failure or of the shunt otherwise not working well, were severe headaches and severe vomiting, as well as just being really sleepy. For me, they occurred during the ages of 2 weeks and 11 years old.
These symptoms meant I had to have repeated operations to replace the shunt inside my brain. This is a pressure valve that is connected to a tube which goes down into my abdomen where the fluid is drained. My shunt is there permanently and is the only known treatment for Hydrocephalus. After my Hydrocephalus operations, I had setbacks and a difficult recovery as my body struggled to adjust to my new shunt, and I needed an IV and NG tube for feeding and medication.
Hemianopia causes me to be completely blind in half of both eyes, and the vision I have in the other half of both eyes, is severely restricted. I cannot focus my eyes for more than 30 seconds. My squint was diagnosed as a bilateral convergent squint when I was a baby, meaning I was cross-eyed. Treatment has helped but now my left eye wanders. Astigmatism makes me see double.
All my eyesight difficulties combined mean I cannot judge distance, speed or depth when moving around and have headaches. Nystagmus makes me feel dizzy and when I’m very tired I really notice that I have more trouble focusing on objects which are still, although they appear to be moving. My eyes become tired, achy and itchy easily too.
I cannot find or see people I know in crowds or if they go off up ahead, nor can I track a finger with my eyes, when a person points, so pointing (although an automatic thing people do) is useless and no matter how many times they insist something is there or ask if I saw it, I will not see if they point. Waving is the same problem.
I confuse certain colours for example, black and brown, light blue and turquoise, etc. Light levels in rooms do not make my sight better at all. I have tunnel vision, no peripheral vision, so for me, seeing is like looking through a letterbox slit: I can only see what is directly in front of my eyes, not above, below or at the sides. I can’t distinguish details, or contrast. I cannot see or read subtitles and need them to be read aloud. If I haven’t seen people in a while or their appearance has changed, I don’t immediately recognise them.
Learning to Adapt
I have had a lot of occupational and physical therapy throughout my life. I was recommended adapted cutlery by my OT when I was little, and have had various models at different times in my life (foam handles or solid) which help me hold them better, but I cannot cut food. I wear glasses with a very strong prescription, although they allow me to see the very little I can. All of my vision impairments are inoperable, given the multiple disabilities I have, so I learned early on from my optician visits that there was nothing to be done due to the combination and severity of my vision difficulties.
My wheelchair helps me get around and when I was small, I had leg braces to try and correct the tightness of my drop/ club foot. They didn’t, so I have had to adjust to living with my feet the way they are.
My educational life has been a mix, I went to both schools for children with severe and complex multiple disabilities and mainstream schools, with PA assistants. I graduated from university with a BA in Human Geography. In lessons, I had people to note take for me and also had class papers and exam papers enlarged.
I have used voice recognition software for years, for computer use, assignments and more recently to dictate my own books. VoiceOver for my iPad is a wonderful tool which reads out everything on the screen. Having my iPad has opened up a whole new world to me in terms of computer access and accessibility features.
I find an iPad much easier than a computer that is not tailored to my needs (although the versions of Dragon Dictation I was given by my OT in the past were compatible). A screen reader, or magnifying glass built-in is helpful as it avoids having to make too many precise movements as doing so exhausts me. And I am terrible at coordinating more than one movement at once.
Many charities and organisations have helped both myself, and my family a great deal along the way, from being diagnosed to receiving helpful advice and resources. As an adult, things have not been easy as once I was out of child services I had to search for adult services. Family, friends and my husband, Alfredo have been amongst those who have helped me. I also met some amazing doctors and specialists but at times have had to fight my corner or use an advocacy agency.
My love of fashion and beauty has helped me show the world that I am more than my disabilities. Luckily, I don’t notice people staring and if they are going to stare they may as well look at something other than my chair.
Have I Changed As A Person?
I have always been a fighter and if anything, I’m resilient because of what I have had to go through in life. I wouldn’t say that’s a change because I have always been that way. I am sensitive to others with disabilities and keen to know them and their life stories. I always do my best to get through what life has thrown at me and, without a doubt, my husband is my rock. That said, life has been, and still is not, without its uncertainties and at times I have, and still do experience anxiety and fear. I have definitely had to learn to be stronger and am proud of how far I’ve come. But generally I’m hopeful for what’s to come.
My Favourite Superhero
I’d say my favourite superhero is Wonder Woman, because she helps people in need and can quickly get to where she is needed the most. In fact, I have based a few book drafts on a character I invented around her. And my character has CP herself.
Thanks Katherine for raising awareness and sharing your story with my readers and me!