Friday, 3 June 2016

I Didn't Ask For ALS, But I Got It Anyways

This is my second attempt at writing today's blog post. After reading and re-reading my first attempt, I came to see how ungrateful, ungracious, and unkind the words were. I wrote while angry, not always a bad thing to do. But I did not let enough time pass for my anger to be replaced by gratitude. I do not want to be that man, that bitter, ungrateful man trapped in a wheelchair. That's not me. I'm still here.

I have had an amazing life, the kind of life people could write books about. I've walked where few have walked, sailed where few have sailed, seen places near untouched by the hand of man. I've hunted wild game and had it hunt me back. I've caught fish bigger than a grown man. I've seen the salmon spawn, the whales breach, the eagles snatch a meal from the sea. I've walked on the desert sands and touched the Beaufort Sea. I have not done it all, there is so much more out there. Nor am I happy with how my life is ending.

Yesterday I wrote about how much I missed traveling and adventure. I've been lucky in this respect. Thanks to the generosity of many and the help from many, I have continued to travel and seek adventure well past the time when ALS destroyed me. Yet I still wish I could still travel. That's all. I wish ALS hadn't stolen my ability to earn the income I once earned, an income which made travel very affordable. I wish ALS hadn't taken so long as to have me outlive my financial capacity. I wish I had died on time; that was the plan, but nothing with this illness goes according to plan. ALS dropped an atom bomb into my life plan, laid waste to everything I thought I could do.

There is so much that has been taken from me by ALS. I wish I wasn't trapped in this wheelchair, unable to walk and soon unable to drive. I wish I could still sail on my sailboat, holding the lines of the foresail just to feel the power of the wind, sensing the water pulling on the tiller firm in my hand. I wish I hadn't gotten this disease. I didn't ask for ALS; I have it, and there is nothing I can do about it.

Here is a bit of an exercise for you. I want to you pick the thing you most enjoy doing in life. In my family it would be things like playing golf, singing, fixing things and doing projects, cooking. So pick yours. Now write it down on a piece of paper. This is important; writing it down makes it real whereas only thinking about it makes it forgettable. Done that? Good. Now pick your second favourite thing; write it down. For me, boating with my kids was first, then traveling was second, usually with family too. And finally, pick a third, and write it down too. For me it was fishing and hunting.

Now I want you to promise me that you will no longer do those things, until the day I die. That's right, you can no longer do the things you love until I am nothing but ashes and dust. Each day you will think about the things you love to do, but you cannot do them. Through no fault of your own, they will be taken from you. Now ask yourself the cruelest question. With this gone from your life until I die, how long do you want me to live? You see, I ask myself that question every single day. How long do I want to live like this?

Let's take it a step further. This is going to take real courage on your part; take the money that you would spend on your first, second, and third favourite things in life, and send it to me. Now I have the money to do what I like to do, but you, through no fault of your own, no longer have the money and are no longer able to do what you love to do. Now how long do you want me to live?

Of course this is just an exercise. Nobody wants to give up what they love to do, not even me. Nobody wants to lose their career, their ability to earn a living and enjoy the benefits of their work, not even me. Nobody wants to lose their financial well being through no fault of their own, not even me.

This won't help you understand what it is like to be dying from ALS, not even close. This exercise doesn't cover the physical and psychological damage of this disease, nor does it cover the daily incremental death of this disease. All it does is, perhaps, help you understand just a little why I might wish some things now and again. It might help you understand how frustrated I am. And if I get lucky, you might send me some money on a regular basis, so I can travel.

If my anger and frustration distresses you, imagine what it does to me. I have to live with ALS.

No comments:

Post a Comment