When I was 11 years old, I decided to take a stand, not just for myself, but for others as well. I jumped up on a crowded lunchroom table at boarding school, declaring that we hated the food we were being served and demanded better. Even though I had a right to an opinion at that age, unfortunately I didn’t feel like I was taken very seriously. However, a few years later the school did adjust some of their policies and even more importantly…the menu! I guess I’ve always had a bit of a problem with authority. 😉
The reason I attended boarding school was because my parents and I lived on an inland barge that they also owned and operated. There were simply no other education options available. The years I spent at boarding school helped form who I am today and how I think about the world. Not that I am a socialist by any means, but I do believe in freedom of speech, freedom of choice, and most importantly in the freedom of thought. I also believe that despite one ‘s talent, not everyone can grow up to become a world-famous CEO.
I have taken care of myself my entire life. Everything I do, I do with passion, focus, and a drive for success. Looking back, I have ticked many of the boxes on my bucket list, which I have of course extended over time. I am grateful for the life I’ve lived and happy with the choices I’ve made. That being said, I despise injustice, selfishness, and jealousy. In my heart, I want to improve the world around me and have a strong opinion about how to go about it.
Having been confronted with a terminal disease, I have noticed that people bolster me with their love, and admire me for my strength and positive attitude in coping with my condition. However, I also sometimes feel a sort of skepticism, as if they have given up on me, thinking, “It’s too late for you mate, sorry…”
Then my child’s feelings come back to mind and I get angry and more motivated to fight, but also disappointed that today’s society has individualized people to such an extreme. We have become more egocentric, not necessarily selfish, but in a way, we’ve forgotten what life is all about. We let our thoughts and fears be dictated by the media and have buried our inner philosophers. 2,400 years ago, Plato said, “There are two things a person should never be angry at, what they can help, and what they cannot.”
I strongly believe in freedom of choice. This is what distinguishes us from all other living species. If a person wants to voluntary end his life, because he does not want to suffer from his disease any longer, that is his justified, individual choice. If others want to fight as long as they can, the same rule applies. Plato also said, “Death is not the worst that can happen to men.”
People living with ALS/MND eventually lose the ability to speak, and in essence a bit of their freedom. However there is one thing we will never lose for as long as we live and is not affected by our disease. Therefore I now say that “silence is the fuel for our freedom of thought.”