In this brief email interview, Patsy Kam, a journalist with The Star papers, shares briefly with us a little about herself , her new book “ I am a Zebra! Making Sense of A Rare Disorder” and some insights about Paragangliomas, a condition which affects one in 300,000 people. Patsy is married to a fellow journalist and has 3 young sons. Patsy tells emmagem in her usual straight shooter no nonsense style her journey so far as a zebra and life after the launch of her book, ” I am a Zebra! Making Sense of a Rare Disorder”
The word zebra is a aphorism coined for medical doctors to look for the simplest answers to exotic diagnosis until the real one is is confirmed.
In medical school, physicians are taught to think of a horse, not a zebra when they “hear a gallop and hoofbeats”. The analogy means that the simplest and most straightforward explanation is often the answer. However, in some instances, some diseases are a lot more complicated, and you get zebras instead, which seem invisible as they are camouflaged.
Which is perhaps why, during a routine check-up for a bad bout of flu, Patsy Kam and maybe her doctor were caught off-guard when the latter found something else entirely. In Patsy’s case, she had Paragangliomas – rare tumors that grow in cells of the peripheral nervous system (i.e. the nerves outside the brain and spinal cord). Overnight her life changed, but this feisty lady showed her true mettle and her journey to recovery is an inspiring one.
1. How did you come about to write ‘I am a Zebra!’?
Writing a book about my condition had always been at the back of my mind. Mainly because I wanted my boys to know what they’re dealing with, if God forbid, they should one day discover they have the same condition. Also, the book contains stories about my boys too, so you could say it’s a diary of sorts.
2. What motivated you to write this book ?
I had discovered a change in my condition, a positive one, so it seemed like a good idea to do something about it.
3. What do you hope to achieve with this book?
I’d like to say the noble idea is to spread awareness of the disease Paragangliomas. And fellow patients finally have a support chain to look to. But honestly, it wasn’t so much about achieving something as it was getting something I wanted to say off my chest.
4. What inspires you daily now? What’s changed for you in writing the book?
Inspiration is sometimes too loaded a word. One is hardly inspired all the time. Probably one of the best inspirations is a deadline! And often, inspiration comes in glimmers, and leaves too soon before it is fully realised. But I am truly touched, and blessed, and from, hence sparks inspiration too, by the many good friendships that have enriched my life and helped me trudged on. And above all, I truly believe I am always weak in my own strength, but God is my strength.
What’s changed? Overnight people look at me differently, because I’m ‘an author’. Which is kind of strange, because I’ve always been a writer, though of different articles.
5. Could you share us with us some tough moments that you had gone through as a patient of this disease and how did you counter it?
Probably the first operation was the most challenging. I won’t give the details, as it’s in the book. But it was a 22-hour operation which left me worse for wear. It was a long slow road to recovery. But when you’re in the throes of it all, you don’t think about ‘overcoming’ things. You just do what you have to do.
6. If you had to do it all over again what would you do differently in your journey as a “zebra” ?
I wished I had been diagnosed earlier. Then the first surgery would not have been so debilitating. But then again, you can never tell with these things can you?
7. What is your most rewarding part in writing this book?
8. What would be your advice for people who suffer a similar plight like yours?
Make sure you get the right diagnosis, seek a second opinion, maybe even a third or fourth. And speak to other patients. So that you know what’s ahead. It could be nothing much, as in some patients who only have the occasional small tumour, or a family of tumours, like me, then it’s not funny.
9. What books are on your bedside currently…
I have a pile next to me that’s enough to start a mini book club! Question is, how many of them have I’ve actually ventured past the first few chapters? But I’ve recently finished The Fault in Our Stars, if only because I wanted to find out what the big fuss was all about, especially by my kids; and I’m trying to read The Kite Runner. Really.
Patsy Kam’s book, ‘I am a Zebra! Making sense of a Rare Disorder” is selling at MPH at RM24.90