Tuesday, 24 December 2013


It's Christmas Eve, or at least the day thereof. It doesn't seem like a special day; it's more like just another day on the calendar. Tomorrow is the big day, that day when we are supposed to feel joy and excitement, that day when we are supposed to be with family, surrounded by love, that day when we should be happy.

Many of us will not be happy tomorrow morning. For many of us the day will be just like any other, a day where we struggle to maintain our happy external face while inside we are filled with pain and tears. It's not just me, it's not just ALS. There are lots of reasons why so many of us will not have the storybook Christmas, why so many of us will have days filled with sadness and melancholy, missing those who should be with us, those who were once there but now are absent in our lives, mourning the losses past, present and future.

I hear from a lot of PALS online, their stories often far more difficult than mine. While I do not find solace in their struggle exceeding mine, it helps me understand my own situation, to see it in a better light. You have to be careful not to compare; there will always be those who are better off and those who are worse off. Yet we all do it. We tend to have this negative bias, seeing only those who are happier, in better relationships, wealthier, healthier. We don't see those whose struggles are worse, whose situations are unhappier.

Today I heard from a Person with ALS, a woman whose onset took place at around the same time as the birth of her son. Her son is now 10 years old; she has been struggling with this illness for a decade. She has been watching herself slowly slip away for 10 years, watching each day's loss for 3,650 days and more. Today she told of her husband whose anger and frustration has been rising for all of this time, coming out in ways that made their life together unlivable. She told of the loss of her marriage, the departure of her son, and how her husband took her then 9 year old boy when he left her.

There are difficult things in my life, challenges with family and children, days when I wonder why. I cannot imagine how hard this must be for her, how painful her loss must be. It doesn't make my situation any better but it sure as hell provides perspective.