My crazy brother

A phone call from one brother informed that he’d spoken with his institutionalized twin and given him my phone number. A few minutes later the other phone rang. It was the brother completely devoid of social skills.

“I just heard you have cancer. I wanted to call since I don’t know how much longer I can.”

True, there can’t be many lives more empty or bleak than his; wheelchair bound, alone, rarely venturing out even onto the hospital grounds for sun and fresh air. Still, his complete lack of empathy was more than I could stand. “I’m not dead yet,” I bristled, and ended the call as quickly as I could.

“He’s limited,” my nephew points out.

Limited is a good word for it. He’s frozen in his limitedness, and I suppose it’s futile to expect anything from him at all.

But it wasn’t always so. He was a boy with limitations, but also with humor and spirit and some desire to participate. Where did that get lost? Why did he give in so completely to his victim status? Was there a key point when he could have turned back from blame and bitterness and taken some interest in his future? I’ve got my ideas about what external forces undermined his sense of self and responsibility, but I can’t help but feel he dropped the ball and gave up on his own life.

I’ve long felt he takes perverse pleasure in doing and being nothing. It’s as if he’s saying, “See, I told you, I really couldn’t get past this.” For him it was literally “all” or “nothing”. It’s the ultimate form of stubbornness. In holding up his failure for all to see, he’s robbed himself of any good feelings he might experience from struggling to come up with something he could do.

The politics of who-to-tell

Beyond the small core of people I needed to tell immediately, there’s a much larger group of family members and friends I want to contact to let them all know what's going on with me, but so far I haven’t been able to do that. I'm in such a state of confusion and limbo. In my head I go through the motions of making the calls and I get stumped when it comes to what to say. The information just isn’t there.

I envision making a host of emotionally charged calls, only to have to go through the process all over again when I find out something more concrete. So I haven't yet. But there are people who know, and they are telling others. I’m grateful that they’re willing to share the burden of spreading my terrible news, but now I’m worried that the news will reach some I wanted to reach first.

For those of you I haven’t spoken with yet, I apologize. I’m not sure how much talking and second-guessing I can stand before I make myself crazy. Or make you crazy. I will use this venue as a place to post the facts as and when I know them.

And I’ll include what I can of my thoughts and feelings so we can individually decide how and when and whether to get in touch. In some cases that decision won’t be any much easier for you than it is for me. Cancer makes everyone uncomfortable and if my condition stirs fears in you that keep us apart, you’ll still have this space to find updates when you want them.

I hate blogs

In a recent New York Magazine interview, Tina Brown, former Vanity Fair editor, characterizes them as having “too much voice”. Precisely my feelings: more personal interjection than necessary or relevant. Why would I want to involve myself in the most personal details of some stranger’s life? And by extension, who would be interested in the ickiness of mine? What sort of morbid curiosity drives a person to even show up and look? (Although admittedly, I’ve peeked where I wasn’t invited on occasion…) How could I share the most intimate parts of me with an unknown audience, the parts of me I might not want to look at myself? Is this a way to force me to own up? Is this what writers go through in getting their musings into hardcopy?

I’ve been writing in my head for years. Maybe blogging is a way to organize and make sense and yes, share with others. There are people who care about me; I know that. Maybe they want to know and don’t know how to ask. Maybe I want them to know but don’t want to endure endless repetition. Can I share my news without dissolving into emotionality? Will my terror terrify, make others want to run from me? Will my dispassionate moments prove even scarier for those who wonder why I’m not falling apart?

Can I keep straight who I told what and when? Can I control how they interpret my words… or lack of them? Is there discomfort for the listener hearing the same thing more than once? And what if I forget to tell a crucial point to a crucial person? They’re then left with their own speculations and worries and wonderings.

And to top it all off, there’s the confusion. I just don’t know enough about what’s happening to provide an accurate description. There’s a big dark cloud in the space where I’m supposed to have a plan of action.

Maybe posting will provide a way to communicate. And some uniformity to what gets said. It’s not a substitute for real contact, but could be a jumping off point to just that.

I’m sure there are others out there too who I’ve never met who may never have heard of me but might find their way to these pages. There are undoubtedly people going through similar ordeals looking for outside confirmation about their own thoughts. People who want to know what they can expect when or if they find themselves facing these issues. There are caregivers and patients, devoted friends and family members, estranged parties who simply don’t know how to integrate the bad news or re-establish contact, people with various degrees of involvement who want to know how much or how little to intrude or to help.

So maybe this is a good time to start blogging, to get the dialog started.

I just found out, my cancer has returned.