Most people don’t usually see people like me. In their field of vision, they often see only what they want to see. Maybe they’re just not really sure what to do with someone like myself. I don’t blame them – a life like mine is in no way an ordinary one with all the challenges it brings – it’s anything but comfortable. My best friend passed away barely three weeks ago from a similar illness. I have had a few life-saving surgeries myself this year, one of the many I receive every year.
There are others like me. We are survivors who others don’t often see or give a chance; even the chance of friendship. Melbourne is my home but many times before I’ve been at risk of losing that home. Since the day I was born I’ve been fighting for my life, living with a range of chronic life-threatening illnesses, the main one being chronic lung disease. Despite the odds I’m still alive. My name is Uli. I am only 18 and this is my story.
My fight for life started 18 years ago on June 23 1995. I was born eight weeks early so the doctors knew I was in for a rough start to life, but exactly how rough they were only just beginning to realise.
One of the first problems that was clear to the doctors was that I was born with bronchiectasis; a big and hard word to say but it basically means that my lungs are continually filling with fluids, which causes me to get sick a lot. It even causes the odd lung collapse or two – which doesn’t really help a lot – especially if you can’t breathe in the first place.
The severity of the problem became clearer after my father gave me milk in a baby’s bottle to drink from. Little did he know that this simple act of love nearly killed me and forever changed my life. Due to a hole existing between my windpipe and my oesophagus (where the food goes down), instead of the milk going to my stomach, it instead flowed into my lungs and anyone who knows anything about lungs knows this is not a good thing. The milk flooded my lungs causing me to cough and suffocate. Thanks to the hard work of the doctors, my life was saved that day; however they could not stop irreversible damage from occurring. They have been able to do surgeries since then which have lessened the impact of that day, but I never did fully recover.
After that I spent the next two and half years of my childhood in hospital. I had a Trachy from birth up until two years ago. When that was removed, I was worried about whether I would still breathe without it. But I did, and that has become a huge milestone of my journey. To attempt to do something normal would be easy for any other little kid, but for me it was hard to even sit because I had tubes coming out of me left, right and centre; like ropes trying to strap me to the bed and not let me go. All my life I have been in and out of hospital and a regular customer at The Royal Children’s Hospital.
Like many other struggles in life, school was difficult for me. Being in and out of hospital made it hard to attend school regularly. It meant I had to repeat a year to catch up on the work I had missed. Because I looked different to everyone else I was picked on and put down by other students. I often felt like an outcast, like I didn’t belong. When other kids were playing footy, I would sit on the sidelines with an oxygen tank. I’m now in year 11 and am catching up on my studies.
I have now made it to the age of 18. I would love to get into the media and television industry. My dream is to write my own book and produce a documentary on my life, to bring awareness to people about living a life with a chronic illness.
I have written this for people who don’t know what it’s like to live with a chronic illness. To make people aware that everyday life is not as easy for some. It’s for the kids who are going through the same thing, but don’t have the confidence or ability to explain their journey.
By Uli Kaplan.