Saturday, May 30, 2009

News Flash: The Tribune's story

You wouldn’t ordinarily want a reporter and a news photographer hanging around in your personal life, especially in pretty difficult and intimate times, but that’s just what we’ve had: The Salt Lake Tribune’s award-winning religion reporter, Peggy Fletcher Stack, and the astonishingly gifted photographer Leah Hogsten. They’ve been following not just our lives, Brooke’s and mine, but also talking to our family members and friends, everyone around. They’ve hung around with me in the house (you can see an embarrassing picture of my rather messy study, though this won’t surprise many of you) and with Brooke in the hospital, both in the previous Rehab unit at the university and now in the long-term care facility at South Davis (you can see Brooke’s life, close up). And you can see some of the many nurses, aides, occupational, physical, and respiratory therapists who are with him every day.

The link below will get you to the story and the accompanying multimedia presentation Peggy and Leah have put together. Brooke and I have just been reading and watching it, and we agree: these pieces capture both what life has been like for the past six months (the brilliantly juxtaposed portraits of Brooke, suffering and smiling), and also what a profound challenge Brooke’s accident has posed to me and the work on end-of-life issues I’ve been doing throughout my whole academic career. We both think Peggy and Leah have got things exactly right, so we want you to know we think it’s been both a privilege and a pleasure to have them around.

There’s more to come: this only the first piece in a series of three. The second one, focusing especially on Brooke, is scheduled to appear in August, and the third will be a one-year followup, scheduled for November.

Here’s the site for the print story:

And for the multimedia presentation:

And there’s a button for commenting on the stories directly to the Trib, which, of course, we hope you’ll do.

Peggy (& Brooke)


R. Alta said...

Peggy and Brooke - I can't tell you how much I admire your decision to let the whole world observe as you contemplate every aspect of your inner lives. I've mentioned my friend Sherry before in these comments. She was one of my best best friends from junior high onward. When she developed ALS at age 30, something so rare it was hard to believe the diagnosis, I was already involved in medical ethics. And like you, Peggy, I had an academic view on end of life issues. In my case they were tempered, perhaps, by the experience of withholding further, futile care from my father at the end of his multi-month ordeal in ICU. I had watched my mother struggle with the reality that further treatment only extended his agony while also feeling that as a wife it was her duty to do absolutely everything to try to keep him alive. In the end, she asked my brothers and me to make the decision for her. With Sherry, though, it was about endurance over years. From the beginning, her husband and mother and brothers all talked about experimental treatments and second and third and fourth opinions. And from the beginning, she had turned to me, to ask about whether and how she could die. I tried to be an honest broker, to tell her what she wanted to know without telling her what she ought to want to do. I helped to arrange her trip half way across the country for a treatment so experimental it required the help of a former FDA attorney. But after years of this she seemed to edging closer to the idea that it was all simply too hard. One day, while her husband and daughter were out for a bicycle ride and her nurse was napping, she blinked out that she wanted to die. She had said this many times before, but this time she blinked it many times, and blinked that she was serious. I thought time stood still and my own heart had stopped. I had long promised her to help make this happen, if that's what she wanted. But the moment when someone actually asks, that is entirely different. I made her promise to think about this for two hours, and if she still felt the same way, I would set things in motion to get the drugs needed to make it painless when her ventilator support was withdrawn. Then I went downstairs and sat alone in living room, in terror that she would really want me to do this for her. As you say in your interview, Peggy, it is almost impossible to put this experience in words, and certainly I never tried to put it into my academic writing. But I do know I was desperately hoping that she would change her mind. She was terminal, but not imminently. She was completely paralyzed, now for over five years, but still communicating and participating, at least somewhat, in family life. I had helped to decide to withhold further so-called treatment from my father, but regardless of the philosophical arguments, withholding is very different from withdrawing care. The sense of agency is entirely different. I wasn't at all sure I could really go through with it. And so it was with indescribable relief that I discovered she had changed her mind in the 2 hours I sat in her living room. But then she blinked out something that has stayed with me forever. She thanked me for having agreed to do this if she asked, and said the thing about her ALS that was so awful, it was the complete and utter loss of control. She couldn't control anything, not even allowing herself to die. But my agreement to do her bidding, to be bound by her rights and wishes, even the wish to die, had given her back one small measure of control, and that in itself had been enough to live for. Ironic, no? I never told her how close I came to saying that I simply could not do this. That would have been too cruel.

George Constable said...

Wonderful, Peggy--so well done. And the photographs are a great gift to those of us who are further away from you and Brooke than we would wish.

Troy & Anneliese Booher said...

That multimedia presentation is so well done. You are both an inspiration, more now than when I first met you. Thank you for sharing this.

darthlaurie said...

Thank you Professors Battin and Hopkins.
When Diane at the reserve desk at the library told me this had happened, I was in shock...I'd seen both of you at the reserve desk for years and I was an English major (although I had never had the pleasure of being in one of your loss) and hearing about the transformation in lifestyles was unimaginable to me.
I've had to wrestle with some similar issues and I respect both of you for being so candid about your choices. I'm also very, very grateful to read on your blog that there's give and take between the caregiver and the years go by that'll be the most valuable thing for both of you.
I took care of my mom from when I was 18-27 until I was so drained that I nearly took my own life. Shortly after leaving her I found my beloved...and months later he was diagnosed with lung cancer. I was there when he died, but the two experiences were so different... one left me feeling barren, the other resurrected me.
Once again, thank you for your insight and I'll be reading and hoping for the best for both of you... and looking forward to the book!!!

Lorraine Seal said...

More coincidence. This post and the Trib story appeared the night I was telling dinner guests about your experience, noting the irony that is central to the story.

Peggy, there's something your account of the day Brooke was injured that I want to comment on here. You say you had a sense of foreboding that afternoon, and then when you arrived home and saw the police you "knew" Brooke was alive.

These are some of the odd experiences of connection between individuals that are hard to explain from a materialist perspective. I had a similar experience all those years ago on the evening my friend Charlie killed himself. I had a sense that something was terribly wrong, but it was too late to stop him leaving the apartment. I shrugged off the feeling, but it was as strong a sense of dread as one can imagine without actually seeing the tragedy itself. I knew, in that moment, that something terrible might happen. Strange.

The story is beautifully expressed, both in writing and photography. The multimedia presentation is particularly poignant. Hearing your voice as you discuss how you re-think your work while seeing the portraits is very moving. Peggy and Leah did a marvellous job.