'I call August my spirit guide'

Photo by Matt Stroshane

By Louise Kinross

As an academic who studied Enlightenment literature at Stanford, Chris Gabbard was devoted to rational thinking and science. When his wife Ilene became pregnant, he imagined their boy "would be a nerdy, geeky hipster like his dad," he writes in A Life Beyond Reason, a memoir about raising his son August. But August was born unresponsive, after doctors failed to detect an obstructed labour, with a severe brain injury. He required round-the-clock care and Chris, then a professor, became his primary caregiver. A Life Beyond Reason is about how raising August, who died at age 14, fueled a profound transformation in Chris. "He disarmed me from all my intellectual pretensions and thinking I knew the way the world worked," Chris says. 

BLOOM: Would you say you had a romanticized notion of science and medicine before August was born?

Chris Gabbard: Oh gosh, I don't know if it was romanticized. I trusted it. I thought science and medicine were humanity's best efforts to deal with problems that human beings experience. I thought it was based on evidence drawn from empirical science, looking for the best outcomes based on the best science.

I see medicine now as not as scientifically based as I thought it was. It's more a practice or habit or set of customs that changes slowly over time. Even doctors talk about how sometimes new information doesn't get incorporated by the general population of doctors for 18 to 20 years. I know the best minds in medicine wish it were faster. The institutions are slow to change and doctor's habits are slow to change.

BLOOM: The book begins with you trying to get help for your wife, who's in labour and the baby's heart rate is low. You specifically write about how you asked 'meekly' for help at the nursing station. But the nurse tells you the doctors are busy and does nothing. It's interesting to contrast that scene with a later scene where you're convinced a baclofen pump is causing terrible complications in your son, and you yell at the specialist who keeps insisting the pump has nothing to do with it. How would you describe the change in you personally from one scene to the other?

Chris Gabbard: The funny back story to that is that when I submitted the book manuscript, the editor took out the word 'meek.' She didn't see any point to having that word. I sent her back the corrected copy with the word 'meek' because it was reflective of my trust in medicine. I thought medicine would take care of the problems. We were at the University of California at San Francisco, one of the leading training and research hospitals. I thought surely if they can do great things curing cancer and helping with other medical research, they should be able to do the simple thing of delivering a baby. I was rather meek and I took it for granted that they would have everything under control. It never occurred to me that they could botch the birth.

What happened later, with the baclofen pump, was after I knew what I was doing. I'd spent weeks and weeks in hospital, and I began to get a sense of familiarity and comfort in being in that environment. I could see how the institution operated and it was an institution like any other, with human dynamics and human foibles. I couldn't get across to the specialist, who was very much a techno advocate invested in the idea that the pump was always for the best, that something bad had transpired. I began to realize I could have a say. I could say something, even though I'm not trained in medicine, to get them to understand that on a basic human level they were misdirected.

BLOOM: The baclofen pump was presented as a magic bullet that would enable August to gain more function. But it turned out to be a disaster, causing repeated infections and surgeries, and unbearable dystonia, which was uncontrolled movement that placed him in painful positions. What did you later learn through your research about it?

Chris Gabbard: I learned the hospital had set up a centre where they were able to buy the pumps at a great deal, so it was one of the few places in the hospital where there was a profit incentive to want to push as many pumps as possible.

Any conscientious parent wants the best for their child and when the doctor says this is the best for your child you say okay, give me the best thing. They downplayed the number of infections and adverse events that had been seen with the pump. Over time, other doctors in the hospital began coming to me privately and saying 'This is not a good way to go. You can't save infected hardware.' But the neurosurgeon who had been brought out of retirement to run this program said 'Oh no, we can take care of it.' After the pump became infected it should have been removed.

For three years August experienced terrible dystonia but it wasn't until the day he died we were told that's what it was. It was the multiple surgeries associated with the pump, not the pump itself, that caused the dystonia. I was initially more enamoured of the technology than I should have been. I erred on the side of believing the people who told me the technology was effective. The pump did do was it was supposed to do, which was relieve spasticity, but it had unintended consequences.

In the book, I narrow my criticism to the fact that they shouldn't have implanted the pump in a non-verbal child who can't communicate what's wrong or how he feels. I know parents who had baclofen pumps go into their children after our experience, and they worked fine. Those parents wanted the best for their child and they lucked out. But they had verbal children.

BLOOM: You took on the role of primary caregiver.

Chris Gabbard: As a professor, you teach courses at certain times but otherwise you're flexible as to when you grade papers and prepare for class. You can do that in the middle of the night if you have to. My wife was a physical therapist who had to be at her practice during certain hours or she wouldn't be paid. Later she injured herself and couldn't lift anything more than 50 pounds. I could lift August easily and to use a lift takes 10 times longer, so it fell to me to drive him to school, pick him up in the evening, drive him to therapy and doctor appointments and do his hygiene in the morning and evening. I took on all those roles and I reaped rewards I didn't anticipate receiving.

I was just telling my college class that there were moments caring for August when I thought I was looking into the face of God. Before he was born I was a materialist. I grew up Catholic but I'd become an atheist. During the period I cared for August I had a weird mystical sensation that changed my entire world view. You could attribute it to fatigue or the wires being crossed in my brain. But it was  transformative. I thought I was seeing a spirit and I recognized the spirit in me and in other people. August turned upside down my entire world view. I call August my spirit guide. He led me into an alternative reality, a reality of the spiritual apart from the physical.

BLOOM: In the book you say disability disrupts meaning. Can you explain?

Chris Gabbard: We're always trying to make meaning or make sense of something in a way that coheres with our world view. So parents will have a child and the child will grow up and may go on to have a career and get married and have children and we derive a lot of meaning from that custom of thinking a course of life has been laid out for us.

In my son's case, disability disrupted those expectations. He wasn't going to grow up and he died young, before his parents did. Everything gets shifted and altered and most times we're not prepared for it. Our culture doesn't want to talk about disabled children that much, or about disability. 

But when meaning is disrupted it can be liberating, because it forces you to stop. It stops you in your tracks. You have to come up with some new thoughts and insights and ways of life that don't depend on making meaning. I teach English and I'm always encouraging students to look for meaning in text, but maybe it's better not to. Looking for meaning distracts us from the real essence of something.

BLOOM: The sense I got from reading your book was that you valued simply being in August's presence.

Chris Gabbard: He disarmed me from all my intellectual pretensions and thinking I knew the way the world worked. 

BLOOM: You write about how as a professor, you used to think that an unexamined life wasn't worth living. 

Chris Gabbard: The examined life gives you a false sense of security. I had to redefine what it meant to be human. August wasn't human by many people's standards because he wasn't a thinking being with language. He couldn't think in a rational, logical way, but that didn't make him any less. He was born of human parents and he belonged to a human family. 

Philosophers like Peter Singer have a different criteria for judging humanity. They also look at the utilitarian side, and say we don't need to spend resources on people like that. It's not worth our time.

Before August was born, I would have thought more like Peter Singer... But August was such a jolly little fellow and was such a cheerful personality to be with that not only was it unacceptable to think of terminating his life, but it was repugnant. I ceased living solely according to reason.

I think men can benefit greatly from a caregiving experience as it forces them to start thinking in a whole different way about resources and time and all of the expectations we have in life. We're trained, as men, to believe we have to go out into the world, into the public sphere, and do whatever it is to make a strong living and presence, and that's often exclusive of the granular family work of caring for a disabled child. But we miss out on so much. We often don't have a rich world because we've stunted ourselves by focusing on the narrow public sphere.

Anyone who has been a caregiver doesn't easily romanticize it. There's a lot of stress and fatigue and anger and rage. But when I speak about the great transformation that happened spiritually to me, it was fueled by that. One goes with the other. The greater the stress the greater the enlightenment.

BLOOM: What was most challenging about writing the book?

Chris Gabbard: Writing the book was cathartic. My wife had to go into therapy and I wrote a book. I had to sort the story out of what happened. The challenge was I was very sad writing the book. It was a gut-wrenching experience. I teach English literature and had taught books but I hadn't thought about how hard it is to make one. The first drafts were unreadable blurt-outs of pain. I had to figure out how to tell the story in a sequential way and in a way that would captivate people and they'd want to keep reading.

BLOOM: What do you hope people take away from the book?

Chris Gabbard: That's varied over time. At one time I wanted people to take away that medical error exists and people should be riled up about it and do something about it. I started the book in anger and sadness and what you read in the afterword is how I came to peaceful terms with everything. But it took five years of writing to get to that point. 

Initially it was an angry screed against medical institutions and the lack of safety social nets. But when I was marketing the book I discovered people were not interested in medical mistakes. They were too disturbed by medical mistakes, so I had to tone that down. They were a little more interested in the lack of social safety supports, but then they'd say 'That's Florida for you,' which is where we lived.

Now when I tell people why I wrote the book I say I wanted to write a book that would encourage men to be caregivers. That there is something in it for them. I discovered from caregiving that the more you do it, the more you attach yourself to the person you're caring for. The more you get involved, the more you will care emotionally. It changed my life and enriched my life. I got stuff out of it that I never would have anticipated beforehand.

I have a follow-up book coming on caregiving. My son will be a jumping off point, but it will be a book about caregiving in broader terms.

BLOOM: Has anyone ever apologized for the care August received at birth or during the time he had the baclofen pump?

Chris Gabbard: No one has ever apologized for anything, including his birth, which was clearly a case of malpractice, but I don't steam about it anymore.

Once our legal case had passed there wasn't any recourse to any kind of solution, and we had to keep going forward. You're thinking about what's best for the child. Physicians have a reason why they can't apologize when the window of litigation is open. They may feel regret, but there's nothing they can say about it.

BLOOM: What advice would you give parents whose child has suffered from a medical error?

Chris Gabbard: You have the child you have, and every day you renew your commitment to that child. You can't perseverate on the wrongs of the past. But I do want my son's story to be told. 

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