Nice, Good, And Important

Yesterday my daughter, Kate, said something to me which was, all at the same time, nice, good, and important. She said, "Dad, I didn't agree with how you did so much travel and stuff when you first got sick. But now that I see how things are going for you, I think it was a really good idea and I am glad you did it." I know that some around me have wondered about my approach to managing my life what limited finances I have. Some have said I should have been more frugal, saving for this part of my life. Some have said I shouldn't be asking others to pay for my lifestyle. On the other hand, a great many more have been supportive, helpful, and generous, ensuring that I can live a full and vibrant life for as long as possible.

It is important to understand that Kate is a very frugal young lady. This frugality is counterbalanced by a tremendous generosity to her family, to various charities, and to a number of churches and church programs. In other words, Kate puts her money where her mouth is. Instead of spending it on herself, she uses it so support others. This all starts will a very careful approach to her spending as well as lifestyle choices which she believes in.

The reason Kate's comment was so nice was that it recognized that her own bias and approach, which had informed and then formed her opinion, may not have been right in my situation. It's nice because she admitted the case, and recognized that my situation made most logic go right out the window. It's nice because it offered validation and approval, something we all need.

Her comment is good simply because it reminded me once again of the advice my neurologist offered me when I was diagnosed; "If you want to do anything with your life, do it sooner rather than later". That advice has coloured every decision I have made since November 22, 2012. I am constantly asking myself if what I am doing will help my life today, reminding myself that delaying or deferring is probably not the best strategy for me.

It is an important comment, not for me but for all friends of People with ALS and those who are Caregivers for ALS, reminding us that this disease turns logic on its head. What you think and how you might approach something bears little resemblance to how someone with ALS will approach it. Money, time, ability; these things all shift and change the instant you hear your diagnosis.

I am convinced that a large part of the reason I am doing so well with this horrible disease is because of the generosity and kindness of my support network. So many of them have supported, and continue to support, my life and lifestyle. I need to live while I can; that ability is slowly being taken away. I need to do what I can, as well as I can, for as long as I can. One day I won't be able to.