We’re at the Planet Cancer young adult’s retreat in Ashland, MA and there’s cancer everywhere, even in my apple. I’m supposed to be at the ‘romantic dinner’, where we will be encouraged to play dress-up with garish costumes, all in the name of good fun and support, but I’m in a foul mood and I think I just lost my appetite. The plan was to hang back for a few minutes and sort out my melancholy while munching the apple, but even that simple plan has been thwarted.
Look, we have to go to the dark places and we have to remember who we are and where we come from. This ‘couples’ retreat has put me into the company of some extraordinary people. There’s quite a range of diversity, but the sub-group of ‘cancer partners’ (of which I am a proud member) had little chat, maybe for less than an hour (not enough time), earlier today. We’d done our fun and games. We’d done our zip lines and a few folks showed depths of courage that they probably didn’t know they had within themselves. So now it was serious time, time to speak your mind. Often a dangerous moment for me.
There was no surprise which two partners had the most to say. These women are dealing with a downward spiral that blocks out all hope. All the attention is focused on the condition of their sick significant others. There are little children to take care of. There is a home to tend to. People have (or had) jobs. It seems like there is no way out. That’s because there is no way out. We live with the guilt of being glad that we’re not sick. We pretend not to think this would all go away if our partner just died and go it over with already. And then we expend what small amounts of energy that are left over from taking care of the significant other, and we use it to beat back all these horrible feelings. Why did you have to get sick? This is all you fault. You ruined my life.
If I never said it, I’d go mad. I couldn’t function. I’d be eaten alive by my own fear of admitting my feelings. But I think I had a glimpse of what happens when I start to decay, not from the affliction of a disease that is seeking to destroy my body and steal my young life, but of what happens when a self-destructive path leads to my own crumbling and compromise. That’s what happened during Emily’s treatment, and, in my excitement, at finding these kindred souls, I shared these thoughts.
I know about caregivers maintaining a healthy distance from those whom they must protect and heal, but I often forget that I sometimes occupy both of those positions. I know I need to say these things in front of these people, but I jump right in. I fall in love too easy. My mistake was to not consider the consequences. I had thought that a fine afternoon run would do the trick and bring me back to a peaceful place, but that opportunity was lost to a foolish massage class, presented by a well-meaning new-ager with little or no understanding of his audience. Also, there were those for whom the peace and serenity that might come from putting your hands on a loved one was, I think, thrown off a bit by the public setting. The result was a lot of giggling and distraction. This proved to be a poor substitute for my run, despite the good intentions of all involved.
We were then left with little or no time to relax before dress-up dinner and I became fuming and furious. I showered and sent Em up to the dining room on her own. She’s tuned-in enough to be OK with that. I know how lucky I am.
So now, I take these moments to engage in some reflection to help snap me out of it. And all I can think of is a comment I made without thinking of it beforehand. I so often get excited and speak without thinking. Listeners get an unguarded honesty that wasn’t necessarily intended, and I think that is good. I’m right there, just being me without thinking of the consequences. In those moments, I am that confident. I don’t put on a show. And while others will (hopefully) react well, I have now gotten more than I bargained for. It’s not the effect of my words on them that I should worry about. It’s the effect on me.
I said that we all had put all our eggs in one basket, and now the basket may have a whole in it.
No one is talking about adoption. Everyone here is has kids or will (maybe) still be able to have kids. But not us. Even in this crowd, we’re still all alone. And in that break-out session, I was all alone. I meant the comment to imply that someone may die, and wouldn’t that be terrible, but that’s not what I said. I talked about eggs and holes, like the holes in a person’s flesh that are used for chemo ports, or the holes that are cut in bellies to remove sex organs, or the hole that I now feel in myself, thanks to cancer.
Maybe in a few days the difficulty of this weekend and my current anger will bear beautiful fruit. I will realize that I can put my cynicism aside and feel hope and strength. Right now, however, I’m miserable, I’m missing dinner and I’m thinking about a joke that was flippantly tossed around during our discussion – a joke that suggested the real reason we were all here was to make the facilitators feel better about their lives – and none of them have cancer or are a cancer partner. They’re good, but they’re other people. They’re not us, and I’m sick of them telling us what to do and when to do it.
That concludes this report from Room CA125. Let me go see if there is any dessert left.