Wednesday, January 9, 2013
Something for the pain was not easy to write, or easy to read. It shows me with my imperfections, trying to navigate a painful place. As one reader commented, any of us would scream in pain with an open tib-fib fracture. The pain itself can strip us of our humanity. And of course it is painful to witness that kind of suffering. That's why I gave Madison such a big dose of pain medication prior to moving her over to the ER stretcher. Madison's pain and terror were particularly difficult for me to witness because I could imagine my own daughter suffering like that.
But I meant this story to be about another type of pain, as well: the pain of having a daughter who is different from other children. For some parents, having a child with a disability may not be difficult, or painful. But for my wife and me, it has sometimes been a struggle. And as a flawed human, I've navigated it as best I could. As a writer, I've tried to be as honest as I could.
Several readers have expressed outrage. My attitude seemed superior to them. It's not what I felt at the time, or what I meant to convey. Rather, I meant to convey how disabilities, and our responses to them, sometimes reveal our character. In this story, we see me getting rattled by Madison's pain, particularly because she reminded me of my daughter, Sarah. We then see me give Madison pain relief, and sedate her so her leg can be set without her feeling it, and then help Madison's sister get in touch with resources. From an external point of view, Madison got excellent care. She got pain medications before we even moved her to our stretcher. I went and found the x-ray tech to personally ask him not to make the film until Madison had gotten her pain medication, because the x-ray technicians sometimes have to move a broken limb to make the film, and I wanted to be certain that Madison got her pain medication before they made the films: typically, in a busy ER, the doctor writes the order for an x-ray, and moves to the next patient. Unlike the orthopedist that one reader mentioned, I treated Madison with compassion and courtesy. I was her advocate. It may not have registered with the readers, but in terms of bedside manner, I did pretty well: kept Madison from hurting, talked with her sister, empathized with her sister as a father of a daughter with Down syndrome. I gave her my home phone number, so my wife could help her find resources in the community. I did the things most of us would want a doctor to do. Madison felt no pain after I started taking care of her.
I believe that some of the readers’ anger may not be from what I did, but from what I felt and thought.
Towards the end of the story, at home, I'm still troubled by the event. It's a couple of weeks later, and I feel that I failed to be caring enough, even though Madison's sister had told Sally, my wife, I'd been kind. That's what some readers may not have registered: that on the back porch, drinking a beer with my wife, I "got it," that my feelings had been muddled, and that I'd somehow failed. And my failure had been that I hadn't registered Madison's full humanity: that in the moment, I hadn't been able to see past her disability. My failure wasn't as a doctor: I'd made sure she'd gotten pain medication, made sure her leg got set optimally, and made sure her sister got resources. My failure wasn't as a father: Sarah and I had a good relationship. My failure had been as a person: to see past Madison's disability.
In my writing, I've tried to avoid self-justifying stories, because they are dishonest. I could easily have written a version of the story in which I had been an all-knowing, all-kind doctor, who gave Madison plenty of pain medicine because I was such a caring person, and had extra insight because my daughter had a similar disability. I think some people may have liked that story more. But having a daughter with Down syndrome hasn't made me all-wise. I'm still a flawed person, doing his best to navigate through times that are sometimes painful.
I can imagine a reader saying, "Of all people, a father of a child with Down syndrome shouldn't have felt that way," as if I should've been able to register Madison's full humanity, even as she shrieked in pain. But in all honesty, all I felt at that moment was the desire that the screaming would stop. I think that many people, in a similar situation, may have felt similarly.
Some of the readers may not have reflected on the fact that Madison was one of many patients I was juggling. My last shift, for instance, I was taking care of a man in his fifties who'd had a large bleed into his brain, causing him to act bizarrely (drinking from his urinal) and the medication he’d been taking to thin his blood is a new drug, and has no antidotes – he could easily have died right there in front of me, and there are no reversal agents I could give him. His CT scan had this huge blossom of blood in his brain, and there was nothing I could do about it. At the same time, a young woman with twins, at 16 weeks gestation, came in with vaginal bleeding. One of the twins miscarried right onto the ED stretcher, this tiny purple human, dead lying on the clean white sheets, and not revivable (at 16 weeks a fetus can not be resuscitated.) I wasn't sure if the other twin would still be viable or not, so I paged OB, to get some help, but the other twin soon miscarried as well. The father, who looked to be in his twenties, never took off his sunglasses. Both of these patients were squeezed into a shift that was already awash in suffering.
What I'm getting at is that the community, and particularly "the disabilities community" can be extraordinarily stringent in their expectations of doctors and nurses. The nurses and doctors in the ER are often overwhelmed by the burden of pain we see, by the violence that enters the ER, by the intoxicated, hostile patients, and by the just plain old heartbreak of what we see, day after day, night after night. Most of us are doing the best we can, balancing the needs of multiple people, many of whom feel that their need and pain is the most pressing.
I've learned a lot from being Sarah's father. But I still have a long way to go. There may be parents of children with disabilities, who – seeing a child with worse disabilities – don't feel a guilty twinge of relief that they've been spared the worse disability. I believe that for many of us, though, that even as our hearts go out to the child with disabilities and to their families, we're grateful that we were spared that extra bit of pain. We just don't admit it to other people, or maybe even to ourselves.
If we look at this story, we see that I gave Madison a strong dose of pain medication. I sedated her so her leg could get set. I offered her family help in getting to resources. I felt relief that Sarah wasn't as disabled as Madison. I felt conflicted the entire time. By the end of it, all I am left with is the hope that if my daughter screams in pain, someone will hear.
I think that may be what is so disturbing about this story: that we have to trust the world to be kind to our children, when even we, sometimes, have problems seeing past the disabilities of some one else's child.
Photo of the Austins at the beach