Secret Sickness

My cousin's six year old daughter has a brain tumor. They have operated, and got one out, but the other one, well, harder. And it's a nasty cancer. The future for them holds radiation therapy and uncertainty.

The big surprise for my cousin, though, has been how many people she knows have been touched by brain cancer. One acquaintance came up and gave her a casserole with some words about a friend's daughter touched by this kind of disease.

She's in the family, now, my cousin. It's the family no one wants to join, the one people shy away from, the family of people who have been touched by sickness. And now that she is one of us, she can finally see us, and see how many of us there really are.

If you can't see someone's pain, you just haven't looked deep enough, or so the old saw goes. We are humans, born between piss and shit, and that means we have all been touched by hurt, by sickness, by difference, by tragedy somehow, somewhere.

It's only been a couple of weeks of the patient journal she keeps for her daughter. What I saw was bully-bully, chin-up, sweet pink hope writing. That's started to break now, though. The Sunday party she saw the girls happily not even thinking about illness. In the next entry, when they couldn't sleep that night, when they didn't want the weekend to be over, well, then she remembered the spectre is always there.

That's the problem. Once you have seen the monster we all live with, well, it's hard not to see him. The old normal is gone forever because death and sickness is at your door. In this culture where victims get to tell the court that it's about them and the changes they had to go through because of their losses, even people who weren't direct victims, it seems so easy to say "nothing would ever be normal again."

Problem is that nothing has changed, really. Human life is just as fragile, and change can come in a heartbeat. The only difference, the only real difference, is now we know that. We are one of the family, and all the challenge we wanted to keep plastered over so life would be nice seeps into the crack in our visions.

You can't possibly have compassion for others until you have let your heart break open. Problem is that so many people have broken hearts that they have so duct taped up, wired together, slathered with cement or just wrapped with kevlar to get though the day that having to face a heart broken open is just too hard.

We teach people only to show their broken heart around other broken hearted people, and now others know that my cousin's heart is broken as her dear child faces suffering & uncertainty, they welcome her to the club.

Anger, depression, denial, bargaining, withdrawal, acceptance. It's not just a dance some humans do, it's a dance we all have to do when we engage our own hurt, our own pain, our own sickness and our own seeds of wellness.

Since Hurricane Katrina, Oprah is shocked, shocked I tell you, to discover how much of a gap there is between the haves and the have-nots in this country, shocked at how many poor people suffer just over the hill from nice & comfortable middle class communities. Me, well, I'm not really shocked this stuff wasn't really visible in Oprah's World, the place she invites women into an hour everyday. But now, we have to see the brave and poignant side of poverty, just like we see the brave and poignant side of sickness, touching our hearts without really having to open them.

Oprah calls poverty the shocking secret of America. I think that says more about Ms. Oprah and the America she shapes than about poverty or bad people. The sick or broken is unpleasant, really really.

The real shocking secret is that all of us are messy, dying humans. And when people like my cousin get slapped in the face with that truth, they are amazed how that truth has been there all the time in front of them, they just never really saw it.

Until we can have our heart break open, there is no way it can expand to encompass more of the world. Too bad, then, there is so much commercial pressure to keep the heartbreaking truths hidden.


The heaviest burden I carry is the possibility of you changing.

I know that in order to truly be a force for transformation, I have to be willing and able to encourage & embrace change wherever it occurs. Every change is a step towards something better, even if it is one of the proverbial two steps back; sometimes we need to go back or get deeper before we can move ahead.

And that means I have to greet every situation, every moment and every person with the possibility of transformation, even if it means knowing that the probability is that the same results are going to occur.

This is the killer part of transgender being about pure transformation or about nothing at all. Unless you are committed to the possibility of transformation in others and in the world, how can you be committed to transformation in your own life? Unless you are willing to open the space for others to be new & different, how can you affirm your own ability to be new & different?

Courage, many have said, isn’t about not being afraid. Courage is about feeling the fear and doing it anyway.

Committment to transformation isn’t about forgetting about the past. It’s about remembering what didn’t work in the past and trying again anyway.

And that’s the burden. Kids don’t carry this burden. They know everything will change, because they don’t know how it has always been. It’s only when you know, when you have seen, when you have a good and accurate model of the world that being open to change becomes an incredible burden?

You remember that satiric part of the note read to me in an orgasm workshop full of kids who couldn’t see the two old people in their midst? That was a part about letting go, seeing new, beginners mind. To the expert there are few choices, to the beginner many. Yes, I understand the power of now, but when you need repairs, do you really want to hire a beginning plumber? Or worse yet, a beginning doctor?

Wisdom is a good thing. But an unwillingness or inability to accept change, well, that is a bad thing. Being both wise and open to the new? That’s just an incredibly hard thing.

I was chatting with someone and expressed my assumption about what their new writing meant. They asked me how I knew, why I made that reading, what if I was wrong?

I told them that functioning in the world requires assumptions in every moment. We can’t reinvent the wheel, tell the whole backstory, reimagine the fundamentals every moment. Some things we need to leave to the assumed, the common, the expected. The problem comes when you are so tied to those expectations that you can’t see the different.

My friend laughed. “Yes, of all the people I know, you are one of the most willing to be open to changing your assumptions based on new input.” I think that may be why Kate Bornstein called me the queerest person she knows.

But that being always aware, always open, well, that’s a burden that gets heavier and heavier for me to carry. That is especially true in the face of people who couldn’t change their mind if God grabbed them by the puddenda. They don’t have mindspace to be open to changes in me, but I need to be open to changes in them. They want to pigeonhole me fast, naming and dismissing me, even as they say I need to be new. Problem is, they think I need to be new in the same old way that they are new.

Transvestism is about changing your clothes. Transsexualism is about changing your body. Transgender is about changing your mind.

Nancy Nangeroni once asked me to write a piece telling why Dallas Denny is an asshole for naysaying. Instead, I wrote this. Ms Nangeroni didn’t bother reading it, but her successor did.

I need to stay committed to the possibility of changing beyond the expectations hung on our bodies, beyond the conventions hung in our history. But I also need to be committed to my own knowledge, to the fact that I know what I know. I just don’t have much extra resilance to be bounced around more; I’m a crispy critter.

And that’s the burden, to stay open to change even while knowing that mostly, things and people don’t really change, open and flower. Mostly they get scared, close down and stay defended, acting out of their own fears and pain.

But damnit, when a bud comes someone has to be there to open a path to more sunlight, give a drink and just keep encouraging.

And that, these days, feels like a wonderful calling and too damn much of a burden.