Friday, 30 November 2012

Theft Protection

ALS is a persistent petty thief. It steals little things over a long period of time. It steals invisibly, in the dark.

I have a weapon. While the ALS may steal my muscles, it will not steal my mind. I can take every moment and store it, keeping it locked safely in my mind where the thief cannot steal it. I can preserve every event and savour it. I can live a vivid internal life, even when my external limitations hamper me.

Keeping each moment precious is not as hard as you think. Yesterday I looked at the snow on the trees outside my office. I thought for a moment about how many days like this I might see and snapped a picture of those trees with my mind. I took a moment to realize the beauty of those trees and that snow.

Then I wondered at the people scurrying by, on their way to and fro, rushing to busy places and doing busy things, ignoring the wonderful world around them. I wondered if those people knew what they would do in my situation. I wondered how many of them would die before they had the chance to appreciate living.

I have been given a gift; the gift of life, the present that lets me love the present. I am a lucky man. I get to see and love each minute of life.

Thursday, 29 November 2012

Some Days Are Tougher Than Others

Having just been diagnosed, I am still bouncing pillar to post with emotions. The least little stress can overwhelm me, and simply talking about my family and friends has the ability to make me burst into tears. I know this will settle as I adjust, but some days are tougher than others.

Yesterday was a tough day. My first day back to work consisted of dealing with the usual work challenges, plus the challenge of telling my co-workers. My work family is an important part of my life, and they are as challenged as everyone else. Each person will take their own view and approach, and each will need support from me and others as they deal with this news.

The other challenge is my motivation. When I woke up this morning, I just wanted to stay in bed. I haven't lost my will to live; I have to work at getting back into my life. I don't know how long it will take, but I know that eventually my life will settle back into familiar routines and patterns.

On the plus side, I am having a bowl of Mini-Wheats for breakfast today. This is the first time I have had breakfast cereal in over a year. Being on a weight loss diet right now just doesn't make a lot of sense. I need to eat right, but I think it might be okay to have some things that I have missed in the last year.

Some days are tougher than others. The way to deal with that is to take joy in the pleasures that I have.

Wednesday, 28 November 2012

Living with ALS

Last week I was diagnosed with ALS. It was not a good week.

For those of you who don't know what ALS is, it is a muscle wasting disease that attacks the motor nerves of the body. Basically your nerves die and the voluntary muscles in your body waste away from lack of a stimulating signal.

ALS is a terminal illness. About half the people with ALS die within 3 years and about 75% die within 5 years. Less than 5% live longer than 10 years. You can find out more about ALS at

I am not going to say much more today. My simple choice now is what I do with the rest of my life, just like everyone else. My choice is to live with ALS, not to die from it. Of course I will die from something, but today I choose to live.