Surreal

I had a very cool opporunity recently: My heart surgeon invited me to give a talk to members of the country's cardio thoracic surgery community about my patient journey.

It was only a 15 minute slot, but I had total freedom to talk about anything I wished. I drafted a short powerpoint slide, practised my talking points for a bit, and prayed that my fitness would allow me to go happily for the actual event day.

I arrived at the event space, and it was packed with people. The organising committee were so kind, they even provided me an escort to guide me to the event hall. Most of whom were doctors and surgeons, but they also had exhibitor booths outside the lecture hall. And lo and behold, to my surprise, there was a booth for the prosthetics used for my heart surgery. I shyly made my way to the booth, dodging the suspicious glances of the staff there. I was dressed in jeans, so obviously I wasn't a doctor! But I worked up the courage to talk and ask the staff about the products. They even gave me a chance to see and touch the hardware. Knowing these equipment was stitched and beating in my own heart was surreal.

Soon it came time for me to go on stage. Previous speakers were presenting very serious topics: research statistics, medical legal laws etc. I was definitely nervous. I had some notes on paper and started bit shakily during my turn. I tried to make some jokes but my delivery probably wasn't so good... poor response from the floor! I soldiered on and got smoother and more confident as I progressed. 

And more people started to come into the hall as I was speaking. I looked at my notes less and less, and I was able to give the audience more eye contact and body language. After I ended, I received very warm applause. The organisers later texted me that my session was well received by the audience. Knowing this short presentation struck a chord with the audience was surreal.

As I reflect back on the tough patient journey I had: long and winding road to diagnosis, the rush to perform my surgery, the difficult and painful recovery... I marvel at what God has done in my life. This journey had such a big ripple effect to my family, friends, colleagues, disease group, church etc. 

Because of my journey, I joined Malaysian Rare Disorders Society (mrds.org.my) as a member, then as a committee. 

Because of my journey, I was able to give guidance to other patients and families on how to handle their health journeys. 

Because of my journey, I started this website, which has been used as a reference for others to get information on Marfan syndrome in Malaysia.

Knowing this journey created such a difference was surreal.

I still have good days and bad days with my health. But I am learning to be grateful, learning to seize opporunities on the good days, learning to take it easy on the bad days. Because I know, that my surreal moments, have changed many realities for the better.