Breaking the News

There is an old (kind of lame) joke:  A guy was going to be away for awhile and asked his friend to watch his house and take care of his cat.  He called to find out how things were going and his friend said the cat died. The guy yelled, “You don’t just tell bad news like that!  You ease into it, like say the cat is on the roof. Then next time I call you say it doesn’t look good, etc.” A few days later the guy calls back and asks what’s new and the friend says, “Your grandma is on the roof.”

I made some big mistakes during and right after the diagnosis process.  First, only my sweetheart knew everything going on. And my direct supervisor knew something was wrong and I was getting testing.  I had to tell her something because she noticed the slight changes. Aside from being a supervisor responsible for my job performance, she was also a friend worried about me.  Still, out of concern for my job, I was as vague as possible. All that was fine, but I didn’t even hint to family and other friends what symptoms or tests I was having.  I don’t know why not; avoidance? Denial disguised as hoping for the best?

So we leave the doctor and Bob says, “We should tell your parents.”  Gulp. A couple years earlier, when they couldn’t maintain their house, we moved together.  In their early 80s, Dad had diabetes and was forgetful (especially about how much ice cream he had already eaten), and I really think Mum had the beginning of Alzheimers.  So although they could survive on their own, I considered that I was taking care of them. Aside from concern about who would take care of them if I couldn’t, how could I tell them I would probably die before them?  It turned out to be surreal. I didn’t want to alarm them, and possibly soft-pedaled it so much that I don’t think they grasped how serious it was. Part of me missed having their counsel and comforting.

Then I had to tell my siblings – what a mess I made of that.  I started by calling my oldest brother. When I started choking up as soon as I said “I have bad news,” he probably imagined the worst about mum and dad.   So when I finally got it out, I’m sure it took a few minutes for him to switch gears and absorb what I was saying. As if anyone can absorb an ALS diagnosis out of the blue like that.

Telling my sister, I decided to email her.  What was I thinking! I definitely don’t recommend that method.  After that fiasco, I asked Susan to tell our other two brothers. If only I had followed the advice in that stupid joke.

I recognized all those mistakes right away, but it took longer to recognize a couple others.  One was the phrase, “I have ALS.” Nowadays I try to avoid ‘claiming’ the disease as mine. I’ve been diagnosed with it, or I am living with it.  It may be a minor distinction, but one that lets me be a person not a victim. Because that was another mistake in those early days – resigning myself to tragedy and almost taking pride in my stoicism.  It felt like one of the few things I had left to choose was how to go out, and I wanted to go gracefully. 10 years later, I’m still figuring out how to balance acceptance with determination.