Friday, 10 May 2013


I have noticed another change, only this time it’s not physical. I am becoming more cautious, more risk averse, more fearful. It’s not that I am a particularly brave man, but I have never thought of myself as fearful.  Discretion has often been the better part of my valour. Yet I ran away today, of all things, from a rain squall. Well, I wheeled away.

I struggle with the fact that I responded to the squall in this way. Those of you who know me well know that a little thing like a storm doesn’t usually cause me to flee. Certainly I would be frightened if I was out in my boat; that’s just normal and reasonable. But I have never run from danger before. I have often walked from it, avoided it, stayed away from it; not often have I run, rarely, perhaps never. And a little rain squall? I like weather.

It was an awful moment for me, realizing that I had become that frightened man in the wheelchair, desperately fleeing indoors because a squall was coming through. The man I was would simply have let the rain fall, let the wind blow, and thrilled in the energy of the storm. The me of days gone would have let the raindrops splash off my cheeks, let the wind buffet me, let the clouds drive on through, daring the storm to leave a mark on me. I used to love this kind of weather.

I saw the black clouds gathering over the sea, rolling towards the beach, the squall driving the ocean surge ahead of it, the waves smashing the beach and foaming at the shoreline. This was a classic ocean squall, all bluster and boom, soon to pass. Rather than simply wait it out I made the wheelchair equivalent of a mad dash from the beach bar where I was reading, up to the main hotel, hiding indoors as if the rain might damage me.

I have begun to notice this more and more, that I am challenged by the risks of living, the dangers that come with daily activity. I worry about whether or not I can open a door, or if a location has stairs, or where the impediments will be. I have gone from carefree to careful, from risk managing to risk avoiding. I have gone from brave to cautious. I have gone from strong to weak, from fearless to frightened.

The dash exhausted me; I rolled into the cafe and had a coffee, reading and awaiting the slow muscular recovery that I now need with virtually any exertion. Then I waited for the rain to fall, wondering why I ran, or rather wheeled, away. As I sat there the clouds passed, the sky cleared. It didn't rain.

Now I wonder, am I going from living with ALS to dying from it?


  1. Richard,
    I think that you're still managing risk not avoiding it. You assessed the situation, perhaps without realizing it, and considered at least the following things:
    * If you get soaked by the rain you will not dry quickly as you're sitting down.
    * Getting dressed and undressed are major events for you every day, and getting changed from wet clothes could take a huge amount of time and precious energy.
    * Once the rain starts falling the ground may get muddy, this will make wheeling very hard and again that will rob you of energy quicker than the exertion you spent getting out of the rain.
    * All of the above is exacerbated by the fact that you're in a foreign country on your own. So even when you are prepared to let people help you, this time there is not really someone there to rely on.
    Really, I think you're frustrated that you need to make these considerations.
    ps I've sent an email out about Wavehill.

    1. Hi Mike

      I don't think you could have said anything kinder, nicer or more supportive. Wonderful.

      Thank you so much.


  2. Dear Richard you are the most brave man I know seeing as you take all these risks despite your illness. You have gone to a foreign country alone. That is brave. So you ran out of a storm , most people would do the same when they are healthy. If anyone could be called brave it is you . The way you have dealt with this horrible illness is nothing short of amazing. The way you travel and carry on your daily life is most courageous. So far you have not let the disease stop you. I know at some point it will but so far you have been tremendous.
    I love you and admire you

  3. Richard, I think your brave. Traveling to a foreign country on your own takes guts. Being cautious is not an act of cowardice, it's common sense.

    Youre living your life with ALS, not waiting to die from it. Enjoy your life.