Sunday, 18 January 2015

Unconditional Body Beautiful Post: Everyone's Beautiful

Body image is something that is important to a lot of people. Everywhere you look nowadays, there are magazine pictures TV ads, and films have all seemingly perfect – looking people in them. I have the added challenge because I was born with disabilities. 
Society unfortunately still sees disabled people as "different", but all my life I have fought to dispel that belief because I wanted people to see past my disability, and I also was quite a shy person so I decided that I wasn't going to wallow in my shyness, and I was instead going to do something about it. What I did was I decided to concentrate on my looks, and would try out my mum's make-up when I was about six or seven years old. I have always liked the way make up makes me feel, and although my parents and family members, and later on my fiance Alfredo, have said that I don't need make-up to look good, I always bought make up whenever I could with my pocket money, and then later on when I started saving my own money. This didn't just stretch to make up though, I have always been a real fashion addict, and have followed trends when I have wanted to, but ultimately have my own style. I would describe it as sophisticated and classic, because whenever I buy clothes I prefer to buy classic clothes  rather than something that is really high-fashion and then ends up going out of fashion quickly. I prefer clothes  that I can use over and over again, and that will not age with the seasons or years too much.

My oldest memory of feeling really uncomfortable with my body was  when I was six years old. Neurosurgeons  at what was then Oxford's Radcliffe Infirmary  hospital had  just operated on me to replace the "catheter" , or tubing that runs from my pressure valve inside my brain down to my abdomen just above my belly button. For those of you who don't know, this is called a VP shunt, and I  have one because I was born with Hydrocephalus, a neurological disability which means there's too much cerebro  spinal fluid inside my brain, and my body can't drain off on its own and it can't regulate the levels  either, so that is why  have got the shunt. Here's a more medical definition of hydrocephalus 

Inside every brain there is a clear fluid called "cerebrospinal fluid" (CSF). This fluid is made inside spaces in the brain, called ventricles. The CSF flows out over the surface of the brain and down the spinal cord before being absorbed into the bloodstream. CSF provides nutrients to the brain and spinal cord and removes waste products. It also acts as a cushion to protect the brain and spinal cord. 
Hydrocephalus is when children  have too much CSF in the ventricles in their brain, and the ventricles get bigger and begin to cause problems. 
Since the fluid is still being made by the brain, the build-up of CSF will cause pressure to rise inside the brain. This can then lead to signs of raised pressure and eventually damage to the brain, if not treated.
So, why do I have Hydrocephalus?

I have Hydrocephalus for the same reason I have cerebral palsy: because I was born three months prematurely I had my oxygen supply cut off. When my twin sister was born before me, the doctors and nurses didn't realise that I was still inside my mum .
I , like my twin sister Natalie, was unable to breathe from the moment I was born, and so was put on a ventilator . I had grade 4 (severe) brain bleeds on both sides of my head, and blood damaged both my brain tissue and the ventricles. These brain bleeds, along with my low-birth-weight (2 lbs 6 oz) and the fact that I was premature and a twin also caused my cerebral palsy

How was my Hydrocephalus diagnosed?

The doctors and nurses noticed that, day by day, my head size was increasing, and this is a sign that pressure inside my brain was increasing. They did a CT scan, and this revealed the pressure inside my brain was getting higher and higher and that I have Hydrocephalus. They also noticed that I have spina bifida occulta   , which is the mildest form of spina bifida where the spine has some openings but they are very small. I also have some scoliosis in different areas of my spine including the lumbar spine and the cervical spine. It was thought at the time I had to be put on the ventilator that my Hydrocephalus was caused by also being on the ventilator, which was the very thing that was being used to save my life.

The operation for my shunt was major brain surgery, and every time my shunt  stopped working (called shunt "failure" in the medical world) caused worry for my parents because they didn't know whether I'd pull through the operations, because a slight mistake by the neurosurgeons could prove  either very serious, resulting in even more brain damage than I already have, or fatal, as if I had never been operated on at any of the times when I was , I could have died because the CSF would have flooded my brain and caused swelling to the point where it could take no more.  

Here's what a  VP shunt system looks like:

Close up of a pressure valve

I had my shunt replaced 4 times in my life between the ages of birth and 11 years old. Each time, I'd have more scars on my body, on my skull, or abdomen. This is what the scars look like:
This is the scar from an operation I had when I was almost 12 years old. I had been complaining of very strong headaches, the kind that felt like my head was being crushed from above, like a massive hand was pressing down on it, but also from the sides and inside out. The kind that wouldn't let me move, because if I did I'd vomit. have visual disturbances or feel dizzy, so I was confined to bed for days. That meant more days off, so many to the point I began to wonder if the teachers thought I'd never come back. I was dur for a shunt "revision" at the time. This means I had to go with my parents to The Radcliffe Infirmary in Oxford to have a CT scan to see if my shunt was working OK. It was that time, but given that I had had such an unpreditable history until this point in my life, I was scheduled for an operation. I seem to remember it was a case of my parents and I going back to our family home in Wallingford, Oxfordshire, packing a bag and heading straight back to Oxford. That time, after the operation, I was hooked up to a blood pressure monitor, and had a drip for feeding. I was bedridden and when I woke up I saw that I was unable to move my head. In some ways, this was good for me because I felt so dizzy. It was so frustrating too. I can only remember wondering when or if my hair would grow back over the wound in my head, and feeling paranoid about having my hair  washed, cut or combed because then people would see it. With the years though, I have relaxed about this, but still make sure I tell whoever is doing my hair to comb it over the wound. When they do, even them using a comb softly causes me great discomfort and pain, because the sensitivity on my skull is heigthened due to so many operations in the same place. I ofen get headaches in different areas of my head, so having my hair cut, washed or dried is painful and uncomfortable, , but I  put up with it because I can't wait to see the end result!

Not One, But Two Shunts

I actually have not one, but two shunts. This is because my first shunts were put into the right side of my brain, and then the shunt was mived to the left side. On the right side of my brain, the pressure valve is still there, but is deemed "redundant" because it doesn't work due to not being connected to a catheter. The neurosurgeons left the pressure valve on that side inside my brain on purpose, because the operation was a delicate procedure, and taking it out would have meant more brain damage, and yet another difficult recovery. . So I have one working, and one redundant shunt. This is documented well in my medical history, but my neurologist still expressed her surprise at seeing two on my CT scan. Maybe there aren't too many people with two!

 The scars below are  my abdomen scars from my VP shunt operations.

Look at my photo, you will have no idea I have hydropcephalus, or that it's so serious. Fortunately with the years I learnt to love my body, and to fuel my love for fashion and beauty even mpore in spite of my disabilities. I have developed a "don't care" attitude towards the world, This doesn't mean I'm negative, what it means is that I think "so what if I have CP,hydrocephalus a shunt and deep scars, all this is a part of my identity.

Apart from the scars, another downside was that one of the symptoms I had of hydrocephalus was vomiting, and it was frequent. As a result, I lost a lot of weight, and there was a time when I was classed as anorexic. Cerebral palsy also causes its problems for me because when I eat foods like bread or potatoes, I start coughing when trying to swallow then because of the texture. I never liked Ready Brek as a kid, and still don't like this, or anything with this kind of texture, and due to my cerebral palsy I have always had a strong gag reflex when trying to swallow. For the most part though, many foods and drinks are fine, aoart from if I drink something that's too hot or too cold, because then I start coughing. 
I have also yoyoed with my weight over the years because of a combination of the problems I had with my hydrocephalus and not being able to exercise. Exercuses like swimming have always been recommended for me and, although I need physical help to move whilst swimming,  I really enjoy it. From ages five to eighteen, I did a lot of horse riding , and had many physiotherapy sessions throughout my life. 

Other People's Reactions To My Scars 
In general, many people haven't said anything about my scars because they can't see them, but sometimes I have shown some close friends. They have been both fascinated and shocked at the sight of them, and have always asked me about them. I have always been open and happy to talk about the story behind them, and still am, hence this blog post.
When I changed hairdressers, the hairdresser noticed my scars and asked me if I had had an operation there. I said I had, and asked her to cut my hair in a style where the scars can be covered by my hair. She was the first hairdresser to ever ask about them, and I am glad she did, because that shows acceptance. No other hairdresser who has cut my hair in my life has ever asked about them.
I was especially nervous when swimming time came around at primary school, and would ask my care assistant to help me into my swimming costume in a way that the other children in my class didn't see my scars. Some did, and made fun of me. I would ask to wait until everyone else was in the pool before I came out of the changing room and was helped into the pool.

To close this blog post, I want to say that no matter what disability you have, what you look like or what you have been through, everyone is beautiful!
This post would not be  complete without this song, Born This Way by Lady Gaga. Love this song! it's a great song to make anyone feel great about themselves.

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