(posted by Linda)
I take home the blue plastic basket that’s been left for us in Bob’s room. Inside is a flyer announcing the hours and location of the Cullather Brain Tumor Quality of Life Center. I also find a packet containing a toothbrush and toothpaste, a little packet of thank-you cards, a small flowered notebook, free meal tickets for the cafeteria, and a book entitled, “100 Questions and Answers About Brain Tumors”. Someone must alert the Cullather people the living instant a new brain tumor patient arrives, because they’ve certainly gotten this basket up there in a hurry. Time to start reading.
I check the answering machine to find that the wonderful Dr. Taylor has been following Bob’s condition and has left her cell phone number in case either of us wants to talk. You don’t find many doctors who do that these days.
I sit at the computer and start emailing. It’s 10:30 at night. I don’t have Bob’s sister’s email or his mother’s, but I email a few relatives on my side, and Joe, who runs our writer’s group and has been a friend for many years. I know he’ll help get the word out. Joe does more than that. In no time I find a link in my inbox to a clinical trial at VCU.
I have to tell people at work; at any time I may have to be gone at a moment’s notice. One thing I find out quickly: People don’t want to hear bad news. As soon as I share what’s happened and what I’ve found out, I get the same response: “Oh, don’t say that!” There’s no point in being negative, I’m told. Hope for the best.
But to do that would be stupid. I saw the scan and I’ve read the statistics. Somebody has to be prepared for what’s ahead. I know I cannot convince myself that this is really something benign, that the surgeon will get it all, that life will go on as before. That how to pay the medical bills will be our biggest problem. It is unhelpful to me to have people suggest, in word or in tone, that I’m supposed to ignore reality, that I would be a better or more “right” sort of person somehow if I could just tell myself it’s a Grade I, believe it, and not bring anyone else down with the facts and the truth of my life.
“You’re not supposed to see it that way!” I’ve heard this viewpoint for years. Books like The Secret, Conversations with God, and The Law of Attraction have certainly made plenty of money popularizing this worldview. When I was younger I devoured books like these and made an absolute idiot of myself. What I found out was that nothing can change reality, not your hopes, not your wishes, not your dreams, not how hard you work, not how good you are at something, and certainly, certainly, certainly not how deeply you believe something or how happy and hopeful your feelings about something are.
I crashed big time finding this out. And knowing it will stand me in good stead. But for now, knowing what I know against the chorus of, “Oh, don’t say that! Are you being negative again?” is like walking through a long dark tunnel alone.