So Canadian

Why am I crying? Or rather, why was I crying? The tears are gone. All that remains is the small residue at the corners of my eyes awaiting a tissue to wipe it away.

I cried because of something I read, a story about the passing of another pALS. Of course I could read these daily if I wanted. Just in Canada alone there are roughly 3,000 pALS and a third of them die each year. There are constant reminders in the ALS groups on Facebook that this is indeed a terminal disease. It was in on of these I found the story that made me cry.

It was the usual story. A man in his early 60's who struggled with the disease for a few years, then passed from a respiratory infection. It sounded all too familiar, with the bits about loving family, children and grandchildren who will miss him. Then it got to the part where his wife, the author of the post, talked about how she would miss him, and how difficult it had been to care for him in the last few years.

She talked about how she had turned from wife to nurse, and how distressed she was that in his last days she had to take him to hospital, even though he did not want to go. At the end, he was as emphatic as he could be, what with his inability to speak clearly or loudly, that he did not want to be intubated or given oxygen. It was her last gift to him, to let him die. Then she spoke of relief.

Then I cried. I did not cry for her or him. I am far too selfish for that. I cried for myself, imagining what might happen to me in those days, wondering who would care for me when that time came. I thought a lot about being alone in those moments, having to make my voice heard to someone who really didn't care about me, a nurse in a hurry, pressured to get to other patients. This is why I want to die at home, alone as I will likely be, as I want to be.

I don't know who will be there when it all comes crashing down. I doubt that there will be anyone writing heartfelt posts in the ALS group; none of my family or friends has joined those groups so they won't be able to post. I sometimes wonder if there will be any heartfelt feelings at all when I pass. Have I worn them all out in the voyage? Will they be so relieved that it is over they have nothing left to say?

This is a difficult disease in so many ways. One of the worst is knowing what is coming, at the same time as not knowing what is coming. I know I am terminal. I know I will die. I can even describe, with some degree of accuracy, what I will go through before I get there. What I don't know is the damage I am doing along the way. I can guess, but most of us keep those kinds of things in our hearts, not on our sleeves.

I know I have hurt people. I'm sorry, more than you can know. I know I have become dependent on people. I wish it were not so, but there is so little I can do other than get through this. I know that there are people who care about me, so many. Yet even so, I know that caring is difficult with someone taking the slow train to its last station, someone as demanding and difficult as I am. I wish it were faster, more deterministic. At least that way people around me could have some true sense of an end coming, a chance for rest and relief. At least that's how I feel.

I want people to say nice things about me after I am dead. Even more, I want people to feel those things while I am still here, to feel the burden lifted. Once I die, it won't matter to me. But it will always matter to those who love me. I am sorry I must die. I am even more sorry that the end of my life is such a drawn out process, such a difficult time. I'm just sorry. So Canadian of me.