Keeping your Head above Water by Matt Levy!

Strive not to be a success, but rather to be of value  - Albert Einstein

I was born at 25 weeks premature in 1987. I weighed just under 600 grams and was approximately equal in size to the palm of a hand. As a consequence being born early, I had a bleed on the brain in the first 3 days of life causing a cerebral haemorrhage resulting in a permeant spinal drainage diversion by inserting a shunt to drain the excess fluid. This lead to cerebral palsy and being vision impaired as a consequence of the first few days of life. It was quite clear from the earliest possible age that I was going to be different.

During the time that I was growing up, I found it hard to come to terms with my disability. It was difficult to comprehend the magnitude of it and to accept the hand that I’d been dealt. But the values and beliefs that were instilled in me through my parents, Penny and Michael Levy, and peers, were vitally important. They got me to where I am today.

There have been some unforgettable, while also challenging, moments to deal with over the years. One of them was when I found myself lying in a hospital bed after one of the various brain operations I had to endure. It was a truly surreal moment and one that has stayed with me ever since. I will never forget that feeling. My body felt heavy, my head was full of stitches, and I couldn’t move my arms and legs. It was a feeling of not knowing a guessing game of sorts. I felt out of my body. I was just trying to understand.

At that moment, I felt that it was too hard to go on. My condition and what I was going through were testing the limits of my resolve. I didn’t really know what I wanted to do, or how I was going to go about it. But spending time in that hospital was also an oddly inspiring experience. I was feeling a sense of helplessness of not knowing what the outcome was going to be. I was scared of what the future would hold for me.

When you’ve grown up as I have, you realise every day is a gift, so you’d better make the most of it.

Having so many operations in the early years of your life teaches you a lot about resilience, attitude, and determination. During that time, I had a lot of opportunities to think, not just about my situation but also about wider issues and life itself. I vividly remember making an emergency visit to a local hospital. A shunt system in my brain had malfunctioned, and the doctors were trying to relieve a build-up of pressure; it was pretty touch and go.

Inevitably, you end up questioning life and all the things you have done up to that point.

I can’t remember all the operations, especially the early ones. My heart and lungs were operated on multiple times because I was born prematurely. My parents recall the life-threatening operations I went through when I was new-born. The struggles I went through from day one, and the fight I had on my hands from the beginning is something that was embedded in their memory. I know I’m lucky to be here.

Walking is something many people take for granted; for me, it was a massive struggle. Being born so prematurely, my fine motor skills were delayed. At the age of four, I was still crawling when most kids had long since started to walk. Having cerebral palsy and suffering three strokes during my formative years made it extremely difficult for me to coordinate my movements the way a normally developed person would.