"Keep a diary," the fact sheet says. It's supposed to relieve stress and keep things in perspective. The only problem is, I find myself simply incapable of sitting down here at my trusty computer and reliving the anxieties of my day. To put them "on paper" is to acknowledge them. To acknowledge them is to surrender to the diagnosis. Oh, I know that isn't truth, but it doesn't matter. It feels true right now. And that's why you're not hearing much from me.
I suppose this means I am still in the "denial" phase of my mourning. But I'm not. Not really. The fact is, I am about 1/4 inch from tears at any given moment as I try to wrap my head around what tomorrow might be like. And the day after that. I suppose it isn't good to dwell on the future, but how else am I supposed to plan? And the fact sheet says I'm supposed to plan.
So, I've told my kids that the study center wants his brain when he's done with it, so it can be studied. And I think of Henrietta Lacks and the HeLa cancer cell research. They've assured me that it's just going to be an autopsy, and they don't plan to do any ongoing research with the brain cells. But what if they do? Will his brain still be around long after I'm gone? I hope the research they are doing will help someone. I really do. Because answering the questionnaires on Tuesday was just about all I could do. I admit it: I broke down.
You would, too, if they asked you to compare your loved one's capabilities now with his or her capabilities ten years ago. Ten years ago, everything was just fine. Ten years ago, the future was bright and shiny. Ten years ago, he was working as a middle manager for a huge corporation and directing the work of others. Ten years ago, he was...himself. Maybe the future questionnaires will be easier to handle, because they'll compare last month to this month, and the changes will be incremental rather than dramatic. I hope so.
Oh! I used that word. Hope. Yes, I do still hope. And I hope I can continue to do so. For all our sakes.