Wednesday, January 9, 2013

A note from Paul Austin

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


I'm one of the commenters from your original piece.

It is clear that both you and Louise have misinterpreted the frustration some of us feel about the piece.

Parents of kids with disabilities understand (possibly better than most parents) the pressures on doctors and nurses. We understand, and often keenly feel, that it is difficult to balance all the patients that need care. We are the ones sitting there for hours with scared, sick, or in pain children. We watch the doctors and nurses scurry about and try to do the best with that they have to work with.

You'll note that not a single comment on your article was about you being a "bad" doctor or not providing enough care or not providing enough pain relief. Yet here you are explaining that Madison received appropriate care. That was already understood.

The "outrage" about your piece, I think, is summed up neatly in your own words:
"I checked up on Madison a couple of times. Even after the sedation had worn off, her face remained slack and expressionless; her Down syndrome was much more severe than Sarah’s. I found this perversely reassuring: My fears that my daughter would someday wail incomprehensibly in an ER diminished somewhat. Sarah would never feel or sound like an animal with its leg caught in a trap; even in pain, she’d still be Sarah, her humanity intact."

This is where you make it incredibly clear that you felt superior to this patient and that your daughter is superior to this patient. This is where you take Madison's humanity from her, by drawing the line between inhuman Madison (and her extremely human reaction to the situation) and your own child, who has a "better" form of Down syndrome that does not take her humanity because her cognitive abilities are different than Madison's.

That's the paragraph that sits on my heart. That's the paragraph that will haunt me every time I look a doctor in the eye and wonder what kind of judgments he is passing on myself or my child.

The points you've made here - that it is hard to work with people with disabilities, especially the same disabilities, when you love someone with a disability at home - could have been made very clearly without stripping Madison of her humanity.

We have all been there. We've felt that relief when our child speaks a word or takes a step. We've looked at other children not as advanced in their development and felt the relief.

But where your piece crossed a line is in the smug superiority. You're so sure that your child will never be there. You're so sure that she will never "lose her humanity." You base that on your brief assessment of someone's cognitive ability. That's where the frustration lies. It is, essentially, that you find Madison lacking.

Your piece validates a deeply held fear: that our children are being treated by doctors who see them as little more than their disabilities or their cognitive abilities.

That's where the "outrage" comes from. If even a doctor who should absolutely know better (because he's raising a child with a disability) can strip a patient of her humanity based on a single interaction and a brief assessment of cognitive ability, what hope do we have for the other doctors who do not walk this road with us?

Dr. Austin, I so appreciate your response to the long, quite critical comments from yesterday. As a parent of a child with severe disabilities and as a writer, I know how difficult it is to put one's thoughts to paper (or screen!), to convey immediacy, to be honest and authentic. I maintain that you did these things in this particular excerpt and refuse to extrapolate on your character. I look forward to reading your book and wish you and your family much courage as you continue the proverbial journey.

Dr. Austin- I thought the story was brutally honest and I too appreciate your response to the criticism you received in response. As the mother of a child with a recently diagnosed genetic abnormality the consequences of which we won't know for a while, I struggle with my feelings and often find myself wondering if her experience will be like other children that meet or read about. We are all works in progress. Thank you for sharing.

I disagree with the first anon commenter here; haven't you been reading? There is no "them" and "us" in this situation. This isn't a "doctors" vs. "parents" thing - in case you haven't noticed, this man is a doctor and a parent, and this isn't the Special Olympics; we've all got kids with disabilities, severe or not. Just because his kid is high-functioning doesn't mean that he's not exactly where you are; with a kid with special needs, dealing with it the best he can. Just like the rest of us. Just like you.

Yes, it's a disturbing story, but it's just as much a part of our community as inspirational pictures or articles about successes in PT. Hiding it because it's not what you love, or trying to write it off because he's also a doctor (an "other") is detrimental to living our reality. Because it's not all sunshine and rainbows and acceptance, even among special needs parents, and it's important to acknowledge that.

Good articles, Dr. Austin.

Thank you, Dr. Austin, for this follow-up. While I am still uncomfortable with the portrayal of the patient in the first piece, a sense a redemption of sorts in this follow-up. Maybe the first piece would be easier to read if more of that could shine through. I think, for example, that we could shirk from a screaming-in-pain person without considering their screams inhuman, or if later, we had understood that you reflected not just on the mechanics -- you served the patient well -- and on the humanity of that service -- you had the chance to put your particular insight (father of a child with Ds) to work. I wish you well and am grateful for your service.

Thank you, Dr. Austin, for this follow-up. While I am still uncomfortable with the portrayal of the patient in the first piece, a sense a redemption of sorts in this follow-up. Maybe the first piece would be easier to read if more of that could shine through. I think, for example, that we could shirk from a screaming-in-pain person without considering their screams inhuman, or if later, we had understood that you reflected not just on the mechanics -- you served the patient well -- and on the humanity of that service -- you had the chance to put your particular insight (father of a child with Ds) to work. I wish you well and am grateful for your service.

I started to type a comment yesterday but gave up in the end because I was tying myself in knots trying to put into words what I wanted to convey.

I feel I can't not comment though.

I see it has been clarified already about the use of the word 'retarded', but unfortunately the minute I read this word, I was probably de-sensitised to any other descriptions that were potentially offensive.

I hate the word 'retarded', but taking that out of the equation, I didn't feel the outrage that some readers did. My son recently spent 3 weeks in hospital following surgery, and my husband and I were with him the whole time. Some children with disabilities didn't have parents with them all of the time and we saw some things that made me feel how I interpreted you to be feeling in his piece.

When I saw and heard a member of staff telling a child to wee or poo in his pad, when he had asked to go to the bathroom, because for whatever reason, the staff member couldn't/didn't get a colleague to help the boy to the bathroom, I felt anger that his dignity and basic needs were being ignored, but I also felt relief that my son had us there to prevent something like this happening to him.

I am also guilty of comparing my sons' challenges to other children I see. As a score out of 10, with 10 being most severely affected (and I don't go around scoring peoples' disabilities but I just wanted to use a simple measure), my son is probably an 8, but it is sometimes inevitable AND reassuring that I will see a child and think 'phew, my son has got so much going for him!' I always thought all parents did this even though we don't speak openly about it.

When you talk about pinching some flab to get Madison's attention, I just thought: Note to self - as well as making sure I wear clean underwear every day, I'd better start doing some sit ups just in case I end up in hospital!!

The main message I got from your piece, and I think after reading all the comments, I may have got the wrong end of the stick at times, was that children/people with disabilities are vulnerable. Everyone knows that. But even in hospital they are vulnerable, not just to medical negligence, but to society's ongoing lack of awareness of disability, and because attitudes aren't always visible, they are easier to keep ignoring. The throw away comment by Joanne - 'broken leg....Down Syndrome'.. She probably wouldn't have said 'broken leg....Black' or 'broken leg....Gay', so how is it still so acceptable to define people by their disability??

When my son was in hospital, I was asked 'does he want pie, or a sandwich for lunch'. I answered 'I don't know, ask him' So I didn't feel that you were stripping your patient of her dignity, more that you were conscious of how staff were not as tuned in as you to how Madison's lack of ability to 'make sense' of her pain was making it worse for her and that the pain relief needed to be given earlier than it would have probably been given to someone who didn't have learning difficulties.

I think these discussions need to happen because it is clear we all think differently and ultimately we all have our childrens' best interests at heart.

As other parents have remarked, the doctoring you provided was good and compassionate in the midst of your conflicted feelings; it's care we'd hope our children would receive instead of what was doled out in the broken leg story in the comments. (Alas, we can't really just trust the world to be kind to our children.)And as the new post by another father/author points out, candor, which I'm entirely in favor of, saves true experience from some of the murky pitfalls disability activists call inspiration porn. I think what pushed my buttons (resulting in a reactionary ad hominem blurt I should have deleted) was a looming pitfall in the opposite direction. The description of Madison conjured for me images and sounds from the 1939 version of The Hunchback of Notre Dame, in which Charles Laughton so wonderfully portrays a fascinating soul in a despised, frightening body. It's not comparisons that bother me, but assumptions about who people are based on certain standards of appearance. Of course it's appropriate and necessary, juggling emergencies in the turmoil of the ER, to do this. And later, few of us have the time, energy or perhaps inclination to reflect and wonder about the inner life of Madison, and the nuances of her perceptions. My own daughter, unable to speak or move, is actually not the limited person the uninitiated (as I once was) would see. Unfortunately, that doesn't make her less vulnerable.

"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."

THANK YOU for not being ^^^^^That guy and for being honest. My daughter with Ds is only 3 and already I have come to appreciate at least two camps of people within the Ds community. Those who can be honest about all of their feelings and those who cannot accept or understand anything negative to do with a person having Ds.

I love hearing the real stories about families and their personal journies. We cannot rid the world of negative stereotypes by only talking about the rainbows and unicorns surrounding people with Ds. We must delve deeper than that. Looking forward to reading about your journey.

I think everyone needs to lighten up and respect each other's paths and the lessons we can ALL gleam from reading them. I have a daughter with Ds. I have been silently thankful that she doesn't drool or play in her feces or masturbate in public. But I have also wished she could be "good" in school, read more clearly and not abuse our household pets. If you haven't compared your lot in life with someone else's, you must be God!

I really appreciate your courage Paul in sharing your deepest and most painful fears. We can criticize specifics in behavior but it's to me a throw stones at glasshouses kind of thing to do. Many people have shame because of their dark thoughts about their child's disabilities/needs/differences -it's not something to be ashamed of but to peel away one sad, fear at a time which can only happen if we acknowledge and allow these things to be conscious and not just focus on the joys (which of course are also there). With respect...

Dr. Austin,

I was really bothered by what you wrote. One of the things I did not see addressed that bothered me a lot is the patient's privacy rights. How is this post and the previous one not a HIPPA violation? I would be horrified my doctor included any information about me in a blog post or a book.

Hi Anonymous -- there isn't any information that identifies the patient in Paul's work.

Paul can probably further speak to what he did to protect people's privacy.


THanks! Louise

Hi Anonymous -- I connected with Paul last night and he confirmed that all names and identifying characteristics of people other than his family were changed, as is the common practice in medical memoir.

Hope this answers your questions. Thanks!

I appreciate your information but still have reservations. By changing information does that mean the nature of the injury was changed or that the person didn't have Down syndrome? If the patient had Down syndrome and the injury wasn't changed, it wouldn't be hard for people to figure out who it is if it is someone they know. The reason I ask is I knew of a pastor who frequently thought he was changing enough information to use someone as an example and failed miserably at concealing peoples' identity. As a result, he lost the trust of members in his church. It is no different with a doctor. If my doctor wrote a memoir, I would be very concerned about privacy since a person can think they are doing a good job at protecting a person's identity when they are not. I would be much more comfortable if I know the patient in question (or family if if the patient is deceased or not able to give consent - I am making no judgement in this situation on the person's ability to give consent) has reviewed the information and is ok with what is said or the cover story that is given. I am a special education teacher and am extremely careful what I say when asked about my work. I don't go into any details. I talk in very general terms. I would never feel comfortable telling a story like that even if I changed identifying characteristics for fear of violating the trust of the students and families I work with..

Hi Anonymous -- thanks for your message.

I think the rigour with which a publishing company would ensure that identity is protected in a book is at a completely different level than what an individual (such as the pastor you mentioned) might consider adequate.