Every week I write about an Adelaide woman who is kicking butt in business or just in life in general. This week’s Inspirational Adelady is of the latter – she’s been dealt the “shitty health card” but in her words, “Nothing will stop me from living life to the fullest.”
GOOD ON HER!
This is Jess‘s story, in her words.
My name is Jess. I’m 29 year old, I’ve studied at University, have travelled overseas, I hold a full-time job, have an amazing partner and friends and one hell of a social life, and like every other 29 year old I live life to the fullest. From the outside I seem normal. I look normal; I act normal, I feel normal. In fact I’m so normal it’s borderline boring. But what distinguishes me from most other ‘normal’ 29 year olds is that I live with Cystic Fibrosis (CF).
For those who don’t know what CF is, and sadly a lot of you won’t, it is the most common life threatening genetic disease in Australia, which affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. This results in repeated chest infections causing irreversible damage to the lungs and for many (like me), we are also unable to absorb fats and nutrients from food, which can lead to malnutrition and difficulty gaining weight.
Unfortunately, there is currently no cure for CF and as the lungs become more and more damaged, the only hope for survival becomes the need for a double lung transplant. And even then, survival is not guaranteed.
I take so many medications that sometimes I’m surprised I don’t rattle when I walk, and around once a year I am admitted to hospital for IV antibiotics to treat a chest infection and believe it or not, I’m one of the lucky ones! At 29 I’ve lost more friends to this disease than I care to count and with an average life expectancy of just 38, a pessimist might say I’m in my final quarter of life. But me? Nope. I’ve got so much to live for and I refuse to give up that easy.
I don’t know what it feels like to breathe easy.
I don’t know what it feels like to truly be healthy.
I don’t know if or when I will need to consider a transplant.
I don’t know if I will live long enough to have children, or if I will I be around to see them grow up.
There is so much I don’t know about my future.
But what I do know, is that nothing will stop me from living life to the fullest. If anything, living with this illness has helped me truly appreciate my health, my friends and all the little things in life just that little bit more. This is my normal, and I wouldn’t have it any other way.
The Donlan Lawyers 65 Roses Ball, raising crucial funds for people and families living with CF, will be held on August 6 at the Adelaide Entertainment Centre. For tickets head to 65roses.com.au