Design or refine your daily rituals to help create and embed a positive mindset. In the early days of being (mis)diagnosed with ALS, I wanted everyday to be a day that I could be present with my kids, and if I was going to do that, I needed to be in a good space.
“What can you learn from this?” is one of the best questions in the world. It requires humility to answer, increases self-awareness and has great potential to progress change.
Letting the people who care about you know that your life may soon end, will create a shock wave – it’s hard to predict with certainty people’s responses. It also not unusual for the person who has the illness to become the strongest person in the picture.
Many of the people around you won’t have experienced what you’re going through, and so they can only imagine what it’s like. They love you and will want to help, and sometimes this means they’ll guess how you’re feeling and what you need from them.
With your own diagnosis, succinctly and specifically, what’s your message? If there’s a conversation you need to have with the Universe, God or alike (whichever suits), what do you need to say? How do you need to express it? With anger or without? Publicly or privately?
That fierce instinct to protect our children, which most parents will understand, sang-out to me in those first few days of being (mis)diagnosed with ALS. The idea that I’d be around to support my children as they travel the highs and lows of life was now clearly an assumption I’d been making. The next trial they were about to face was losing their father.