Last week I got an email from Mike Howard. It had been sent at 3:56 am. “Sorry for this email, but Mary suffered another stroke last evening. I’m heading down to the hospital now again.”
I wish I could say this came as a shock. But to be honest, I can’t. How anyone can survive the kind of psychological torture Mary Weiss has been forced to endure I don’t know. Mary is the mother of Dan Markingson, who died in an unethical research study at the University of Minnesota. When I think of Mary, I think of the Book of Job. I think of God making a deal with the university. You can take away her child. Let him commit suicide. Hide the facts. Deny responsibility. Refuse to investigate. Tell people that her son’s suicide was her fault. File a legal action against her demanding money that she does not have, just to intimidate her. See exactly how much she can stand, then torture her some more.
When I first met Mary, five years ago, she was a strong, determined, very angry woman. It was the fall of 2008 at the Coffee News Café in St. Paul; I remember she was wearing an Obama campaign button on her sweater. But everything changed sixteen months ago when she suffered a severe stroke.She has fought back hard to recover, but the road hasn’t been easy. It seems as if a month doesn’t pass without Mike calling the paramedics, or rushing her to the doctor, or taking her to the emergency room. This recent stroke was the most severe setback in a while. Mary has been in the hospital for twelve days.
Fighting the University of Minnesota may have been the right thing for Mary to do – in fact, it may well have been the only thing to do – but it has taken a vicious toll on her health. I don’t think anyone who has not gone through such a battle can understand the kind of emotional exhaustion it involves. Your days cycle between gnawing anxiety and futile rage. Your thoughts grow narrow and obsessive. You struggle to sleep, but when you do, you are tormented by nightmares. Occasionally you are given slivers of hope – if not, it probably would be impossible to keep going – but they are rare. Even the people who support you say you are being eaten up from the inside.
Worst of all are the empty promises of help. You file a complaint with an advocate or legal office, only to see the complaint go nowhere. You find damning evidence that might turn the battle in your favor, but you’re instructed that it has to be kept secret. You work constantly to make the case public, hoping that publicity will bring about change, but after only a few days the story is forgotten. You meet with reporters and politicians who promise to help, but they don’t follow through. Nobody seems to understand what a devastating blow it is to delay, or stop returning calls, or offer help and then pull it away. To them it probably seems like a small thing. But when you are desperate, these false promises feel like a kick in the head. They are almost worse than nothing at all.
Nobody knows this better than Mike Howard. It has been 3397 days since Dan died, and I doubt that a single one of those days has passed without Mike working on the case.To call him driven would be to completely understate the fury with which he has pursued this. He is like a man imprisoned on death row for a crime he didn’t commit, fighting and clawing to find some way out before the execution date. There is not a single document related to Dan’s case that he has not committed to memory, not an angle for appeal that he has not explored. And what is the result? “We have worked on this thing for nine fucking years and we have gotten nothing,” Mike says. No vindication, no recognition, no justice.
Maybe justice will come eventually. I hope so, not just for Mary’s sake but for that of other families who have been abused and mistreated by the university. I wish every family had advocates as tenacious and single-minded as Mike, but people like that don’t come around very often. The fact is, University of Minnesota officials have been fighting an injured, emotionally exhausted 70 year-old woman in fragile health, and they believe they are crushing her. The are accomplishing this not by attacking her directly, as they have done before, but by a series of endless denials, delays and stonewalling. If they can outlast her, as it seems they may, they will win. And apparently many other people will simply watch and wait until that happens.
But the mistakes that lead to Dan’s death weren’t – and aren’t – unique to him. Nor are the effects limited to him or to his mother. Nor do they end with his death or her loss. The mistakes affect all of us. Her loss is our loss.
(Note: This post also appears on the blog Fear and Loathing in Bioethics.)