On Privacy—It’s Tricky.

It’s occurred to me many times that some people who read Belonging After Brain Injury: Relocating Dan or this blog may feel as though I’m transgressing Dan’s right to privacy, because I write about issues that are certainly personal (such as my last post that addresses incontinence). As I wrote the book and ever since, I’ve repeatedly considered my brother’s right to privacy, and I’ve never been entirely comfortable with sharing the most personal aspects of his life. However, my decisions guided by the following:

1) I read the finished book in its entirety to Dan before submitting it for publication, and he granted his approval. He didn’t (and doesn’t) agree with all I wrote, which is to be expected; where I write about his anosognosia and related matters, he understands what I think but doesn’t believe I’m right. That, of course, is the nature of anosognosia. He nevertheless likes the book and thinks of it as an important contribution that we’ve both made in our effort to help other survivors and their families, caregivers, and service providers.

2) Because the purpose of my writing is to provide real-world insight to others who are encountering the same challenges that Dan and his family confront, I would be less than optimally helpful if I didn’t address issues that others whose lives are similarly affected are likely to face. Dan is not alone in the kinds of problems his TBI has created; they are indeed common among survivors, and so they are important to address honestly and as fully as I can. If I were to write only about easy issues, there’d be little point to my writing at all. This is a fact that Dan fully gets and agrees with my thinking about.

3) As I try very hard to make clear, Dan is not at all blameworthy" for his problems with TBI. They are problems he does his best to manage, and some (such as those that stem from anosognosia) are more unwieldy than others. As I also make very clear, I admire my brother and the way he has coped with the effects of his TBI over the past 45 years. As I hope I make very clear, my admiration is not at all diminished by any of his difficulties. We ALL have limitations; TBI imposes a certain roster of them. And that is, and never has been, his fault.

Again, I’m not entirely comfortable sharing everything that I have felt it’s important to share. Dan’s willingness to make public even his most personal issues only increases the respect I have for him, and I hope it has that effect on readers, too.