Sunday, November 8, 2009

On being thoughtless

One of the good things about the passing of time is that it puts another day between me and my breast cancer. It feels and sounds terrible selfish to say that but it's an honest statement about how I feel.

Dave and I went to a find raiser last night for our new friend Laurie, who is battling a brain tumor. She had an MRI recently that shows no evidence of her tumor, and that's wonderful news. She's filled with optimism and hope, and has a strong network of family and friends helping her along her sally. I'm convinced that that kind of support is key to recovery.

Laurie made a note on her Facebook page yesterday that she hates having "chemo brain." It's hard to explain what that is... you're disconnected and out-of-sync. Forgetful and slow. That's what I remember about it; it may affect people differently. Sounds simple and perhaps even routine, like an ordinary bad day.

But chemo brain is different because it becomes the new normal. It's not like the morning you drank the night away. It doesn't go away with a couple of Tylenol and nap. Chemo Brain makes it hard to get into a rhythm and to keep that rhythm going. Because it hangs on, you get used to it in an uncomfortable way. You start to grow concerned that this is the way you will always be. Your new normal is something that isn't what you used to be at all, nothing you'd choose. The harder you to try to fight to get back to being yourself, the more comfortable chemo brain gets to living in your world.

I used to worry that I'd never be "Me" again and that frightened the hell out of me. I couldn't imagine how my family could love me, my friends like me, my colleagues respect me if I changed into someone I didn't want to be because of the poison that was running through my blood stream. I was turning into someone I didn't know and didn't want to know. I wanted to badly to be "Normal Me" again that I'd have given up almost anything God might have asked.

I mention all of this because someone posted back to Laurie's lament, "But it's funny to the rest of us."

Funny? That remark bothered the complete hell out of me. I wouldn't say it on Laurie's Facebook page, but that shows such a lack of respect. That someone would find amusement in her cancer is a reaction I can't get my mind around. And apparently it wasn't just the writer finding humor... who are "the rest of us?"

I joke about my cancer, but it's OK for me to do it because it's mine. I earned the right to joke about it because I'm a proud, card-carrying member of The Chemo Brain Club. I sometimes voice an affirmative about something and give the reason as "Why not, it won't make my hair fall out!" I've even blamed something silly I did on the lingering influence of chemo brain.

It's OK for me to do these things because I've been there. If you haven't then you can't. My blog, my rules, but come on, think about it... it's decent and courteous NOT to make fun of people who have cancer.

Maybe the person who made the remark earned the right to make jokes about chemo brain the way I did, and the way Laurie is earning her membership card right now. But I rather doubt it. I think instead the writer is one of those there-in-the-moment kinds of people who makes time to think about Laurie when it's convenient to do so.

It's these thoughtless moments that make it OK for other people to continue the thoughtlessness and foster insensitivity. I'm not asking you to embrace it the way I do, I'm just asking you to do what your mother (should have) taught you to do... if you can't say something nice, don't say anything at all.

Put another way, if you can't show a little support, shut the hell up and get out of the way. We're fighting cancer and you're name isn't on the invitation list. We'll talk to you later. Maybe.

I don't want to rant on this any more. I want to forget one person's classless unkindness and move on.

On another cancer note, I'm going to Maine on Wednesday to spend the day with another friend who is in treatment with a brain tumor. She is having a very difficult time. She's been robbed of the lost the sight in one eye and is hopeful that her treatment will stop the tumor from stealing the sight in the other. When I spoke to her last week she sounded so tired... not just physically, but mentally--as if just talking and focusing on out conversation was a supreme effort. Talk about chemo brain.

She and her husband were given a week in Key West as a get-away, and they are there now. I'll call them tomorrow and confirm their return plans and get the time and location for her Wednesday treatment. It's going to be a difficult day and I'll be honest and tell you that my head isn't looking forward to it. But I also know that my heart knows it's the right thing to do and that my hart wouldn't have it any other way.

It's the little things that people did for me that helped my head find its way back from my cancer experience. It was the small gestures and the kind words that I placed on top of the foundation of love and support that my family worked so hard to build. It takes something as simple as a smile and a gentle touch of a hand. It takes listening. That doesn't mean agreeing, just listening--that is so important. And sometimes in just takes being there, in the same room or the same space. Just being there and letting the togetherness fill the space in place of talk and voices.

No one earning a membership card to the Chemo Brain Club needs ridicule disguised as friendship.

1 comment:

terry m. said...

I totally get how you feel about being able to make certain comments only if YOU'RE the one with cancer. I had someone make a comment to me at my little guy's parent/child soccer game...she didn't want to participate on the field, and she commented "Lucky you, at least you can play the cancer card"...Seriously? I was so irritated....little did she know that I wanted to be running around on that field more than anything else that night. I have been the assistant basketball coach 2 years running, the dugout mom for a couple of years and I was looking forward to helping out in some way this year with soccer even though I knew nothing about the sport other than the ball has to get into the opposite goal....and she thought I'd enjoy having the opportunity to 'play the cancer card' I was furious at how insensitive that comment was. I had to walk away and focus my attention on the game and collecting memories on film believing that next year I'll be on that field running around with the rest of the parents having a great time playing against the kids.