Cystic Fibrosis Has Given More Than It’s Taken

Day 31: I Wouldn’t Change a Thing

Sandi in 1973 | Photo from the King Family Archives

​Life with Cystic Fibrosis is hard — I’d be among the first to admit that. However, it’s also given me far more than it’s taken — and it’s taken an awful lot.
I am who I am because of my life experiences. Our experiences shape and define us.

I am stubborn & determined
In my world, if I don’t get out of bed and carry on, there’s a high likelihood I will die. There are many times when I could have simply decided it wasn’t worth it. To give up and quit.
Being stubborn and determined hasn’t just kept me alive — it’s given me the skills to pursue what I want from my life.

I have more empathy
I was born and raised with white privilege. But I quickly learned that I have second-class white privilege. The discrimination I have faced and the attitudes and assumptions people display have shaped me and given me a different perspective on life.
Being on oxygen, people avoided me, judging me solely on my appearance, and their belief that I was contagious. I was slow, cumbersome as I moved, and people would rush past in annoyance.
None of these feelings are nice — as a result, I try to be more compassionate in my dealings with other people.

I don’t panic in a crisis
I’ve been through more than my share of medical emergencies. I know what to do and the importance of staying level-headed in a crisis. I can stay calm in the face of any calamity — from helping a co-worker who had sliced off her palm and needed an ambulance to driving my haemorrhaging dog to the closest emergency vet.

I know how to listen to my body
I’ve learned to be my best advocate. And part of that means being intuitively aware when something is not right. For my medical team to take my concerns seriously, I need to give them accurate descriptions. I need to pay attention to my warning signs.
Part of that is knowing when to rest. And learning to accept that sometimes rest is more important than anything else.

I appreciate the little things more
I’ve always known that my time would be short — so I’ve learned to make the most of it. To slow down and savour the little things.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
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​If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here: Your Daughter Has Cystic Fibrosis