The Think Piece Interview: Dr. Claudia Osborn

On July 11, 1988, Dr. Claudia Osborn, a prominent physician practicing internal medicine in the Detroit area, was riding a bicycle when a car going the right wrong way struck her. She got thrown in the air and landed on her head. She doesn’t remember it happening. What she does remember is her recovery from a traumatic brain injury (TBI), and in 1998 she wrote what is widely considered the defining TBI memoir with Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out. We had a chance to visit with her recently for a most illuminating discussion on her life then, her life now, mental health, and her life in between. Her contribution to the understanding of TBI has been immense, and we’re so grateful for her insights.

TP: You wrote your book in the early 1990s. What was available at the time on the topic of TBI?

CO: I mean, it’s certainly changed since the time that I wrote mine, but we didn’t have much literature in the brain injury field.

TP: I like that you included the perspective of your partner, Marcia.

CO: You think of the injury from their perspective . . . my God, you’re used to somebody who did all these things for you in your life, and greeted you each day, and said, “Hey, how was your day?” and all these things. And the person now, now that they have a brain injury, it doesn’t even occur to them to say those things. You’ve lost your best friend. You have to learn to adjust to this new person.

TP: You seemed to make a conscious effort not to rest the book on your emotion of the events but to mostly tell stories and set scenes. It was very literary.

CO: It is important to go somewhere with the book. Don’t just give me a sob story. Give me a book that says, “So, this is how I moved forward. This is how Johnny and I changed things. These are the kinds of things we did with what we have.” I want a book where the brain injury takes me to a place where I can see quality of life for that couple years down the line, you know? I prefer reading a book where the reader really can say, “Oh, OK, this can help me. This can provide a road map for me to do this with my family. This is how they solved that problem with their interaction; this is the cueing technique they used for that.” I didn’t write a lot about family dynamics in my book, but I lecture a lot about it, and I think it’s very helpful when people tell you what kind of cueing techniques they used so that they could create more effective interaction.

TP: Are you still with Marcia?

CO: I was blessed to have Marcia in my life for 27 years, and she really was an extraordinary person, and I really could not have recovered from my brain injury without her, and without what some people perceived as a tough-love aspect of Marcia, but it is that piece . . . you know, being coddled after brain injury is not helpful. If they fill in the blanks of what you can’t do, they really will set you back. You really have to provide that tough love. But Marcia died in 2010 after having cancer for nine years and for the last four years, I was her caretaker.

TP: With the bicycle accident having happened 25 years ago, with the benefit of time, do you now see the new habits and cues you use as essentially a new identity? Is the knowledge that you’re still managing a TBI still as present with you or has it faded?

CO: You always do have to be aware that you have this brain injury and you have to know what limitations you have. And you have to utilize your strategies that work for you. The difference is, one, with time you become very good if you work hard at it. But some of them do become a natural extension of yourself, so, for example, you automatically pick up your fork to eat your salad; you don’t say, “Oh, I can’t get the salad to my mouth without using a fork.” You just do it. And that’s a strategy. Many of my strategies are like that: I just automatically do these strategies. Still, it’s very halting. It took me five years to become fifty percent effective with my most basic strategies. So barrier is kind of your constant companion. Every single year since I’ve had that brain injury, I have improved, and some of that is becoming very effective with the strategies, having very good rehab, having marvelous backup systems and resources—I still work with a coach twelve hours a week. Some of it is also . . . the brain does continue to change. We didn’t have a zillion strategies that would give me language. I’m one of the people who are very fortunate to go from those early years when it was very difficult to translate my thoughts into words, or to perceive what you were saying to me into being able to be fluent. My word-finding is not always perfect, but I think most people consider it reasonably effective.

Today I don’t think, “Oh, I have a brain injury,” any more than, hopefully, the person who is a diabetic thinks about it or whatever. Hopefully you live well with your disability instead of focusing on limitations. I do insist on constantly pushing the limits of what I can do because I think anytime—for anyone, whether they have a brain injury or not—if you stay within your box, you really limit your growth experience.

TP: You described the sensations of having your brain flood during your recovery, when you would become overwhelmed and you’d seize up and have in essence a panic attack. Do you still experience flooding?

CO: I still flood. I have a fair amount of frontal-lobe damage, and certain things are definitely going to be a little different in that functioning, but what you do is you recognize what starts to bring it on, you recognize the physical change in our body, and you manage. But the trouble is that you’re often in positions where you can’t do anything about it. Take travel, for example. I’ve always traveled a great deal because I travel to lecture. And I would have a little cue card in front of me that would tell me exactly where I was going and anything I needed to know. A common question asked was where was I going and it was right there on the card in front of me. But I remember a security person, instead of asking me where I was going, where I could’ve easily said, you know, Minneapolis or whatever, he said, “Are you arriving or are you departing?” Well, see, not knowing the answer to the question, of course, was immediately, in that situation . . . and here’s this security person and I don’t know the answer and if I don’t know the answer then I’m going to be taken off to the security office . . . you know, that whole thing, which always happened. But of course it happened because I couldn’t manage that. Now, my mind has become a whole lot more flexible in terms of its ability to process information. Otherwise, I use stalling tactics to get to the information I need if I’m a little stressed. So I can avoid flooding a lot. And I also have the advantage of a service dog . . . and it used to be that there’d be these situations where I’d do something a little off and it would get me into trouble. Now people see the dog and they they give me a little bit of slack. That also decreases the flooding because they’re not so harsh initially in terms of a mistake I’ve made.

So, here I am with the service dog . . . I was traveling across the country, but I was on one of those flights that stops for a couple of hours, but you get on the very same plane to continue to California. So, since it was stopped for a couple of hours, I asked if I could take my dog out so he could relieve himself and then put him back in. And they said of course, that would be fine, and I did that. But my boarding pass was from Detroit, so the security guard, the TSA person, would not let me back into the airport . . . and, of course, it had taken quite a long time to find grass in Minneapolis, and so I was now in danger of missing this very important flight to a lecture I was giving in California. And that person has all the control, and I can’t back away, and it seems very clear: I’m on the flight, I have my boarding pass, I was given permission to leave, I obviously have the service dog, it’s what I’ve done . . . you know, I don’t have any luggage or anything, it’s just me and the service dog . . . but I can’t fix it. And so a situation like that, any high-stress situation where I can’t back away from it . . . my mind will just stop thinking. I can’t any longer really interpret what he’s saying and I can’t find adequate words to any longer explain my situation, so I can’t really communicate very well in that situation. And it’s frustrating because that’s going to make me miss the plane right there, that I’m flooding. There’s still not quite a lot I can do about that.

TP: That sounds enormously frustrating.

CO: It is. Now in that situation I have one final thing I do, which is try to stop what’s going to cut it off at the knees by intentionally trying not to think. So what I do is, in my head, I sing. I try to block all thought. Then when the mind calms down a bit, opens up a bit, then try to ask myself questions about the problem. Unfortunately, in this situation, I was singing out loud and the song I always sing is “One, two, three, what are we fighting for? Don’t ask me, I don’t give a damn, next stop is Vietnam.” It’s not exactly the most popular song to be singing at the top of your lungs in the security line. So he did bring in his supervisor, who obviously recognized that all they needed to do was get me back to my plane . . . you know, put me on a cart and take me right there. So in that particular situation, it was solved, but you’re always going to have those residual things that I can’t fix, but in my average day, I don’t flood, whereas my average day right after the injury, I’m sure I didn’t have a day where I didn’t flood.

TP: Are you still experiencing weakness on the right side of your body?

CO: No. It’s still technically an issue, I mean, if you were to evaluate it, I have some . . . the left side has become more dominant, it’s stronger, it’s more coordinated. But the right side . . . I make the right side do everything. I write everything with my right hand, I paint with my right hand, I open the door with my right hand, put a key in a lock . . . whatever. It wouldn’t occur to me to use the left hand because I can; I make the right hand do absolutely everything. And I am proud to say that this summer—and I may regret the decision, but—I have been invited to join my city’s softball team for women over fifty, and I will be batting right-handed, which is something I finally mastered two years ago. It is something I have worked hard at.

TP: Physical exercise seems to be essential to relearning how to be in the world.

CO. I’m very physically active. I get a lot of exercise every day. I’m quite strong and quite healthy. I enjoy participating in a lot of sports. Some of them I can’t quite do in the same way. Certain things, you know, you’d like to turn your mind off a little bit, and bicycling is one of those areas of such enjoyment where you want to shut down and just enjoy the physicality of the motion and the air around you and taking in the sights and the sounds. But you have to learn new habits. After the injury I would go with my service dog when I roller-bladed. He was a small dog and he rode in my backpack on my back because on the footpaths I would way too often knock the person off who was coming toward me. I just wouldn’t notice them. So the dog would just nudge my neck to get me to acknowledge, to attend to the fact that someone was coming so that I would move around them. And it gave me a great deal of freedom, rollerblading that way.

TP: A dog in a doggie backpack? That sounds adorable.

CO: I used him when I was bicycling as well but I’d be moving a little too fast, and if I didn’t catch the cue fast enough, I’d smash into the back of a parked car or whatever . . . you know, it wasn’t good.

TP: Have you had any scares with falls or blows to your head since your injury? I imagine that must be terrifying, the thought of reinjuring your brain.

CO: For most people with a brain injury, we all know that we are at greater risk. I own a helmet for everything, you know, my horseback riding, my kayaking, my rollerblading, my bicycling, my rock climbing. But, despite that, where do I do these activities? I do them outside. Where are my emotions disinhibited? When I’m outside, when I feel that sense of just being free, and it’s a glorious sense for me. And that passion takes over, I get a little too happy, and with that safety can take a back seat. It’s a problem with disinhibition. So I have made a number of very poor decisions, and I’ve risked grave injury a few times, and I’ve been a little more injured than one would want. But it’s a learning curve. Fortunately, most activities I do, someone else is there, so they can grab me and say, you know, “I don’t really think you can rock-hop across that particular river.” Because that isn’t what my mind says. It just goes. It doesn’t stop to think.

TP: Disinhibition in a way seems liberating and pleasurable.

CO: Disinhibition is exceedingly pleasurable. In my lectures, I have a favorite slide—I think it was a New Yorker cartoon—and it shows this cartoon character on a stallion leaping over the backyard fence with a saber drawn, and that’s me, and it feels magnificent. The fact that it’s scaring all the neighbors is beside the point. It’s why it’s a hard thing, and I’m blessed in being more adynamic than disinhibited. It is a difficult state to rein in because you feel on target, you think you’re right on point, your judgment being a little off, and you don’t realize quite how you’re being perceived by the people around you. But we work on this disinhibition, in part because of the fact that ultimately we care about fitting in with our society and being allowed into the restaurant again and, you know, all of those things. So we can work with it, but part of how you work with it is just recognizing, Hmm . . . my pulse is starting to increase, I’m starting to feel just a little too good. Huh. If I’m feeling this good, maybe I have to stop and look at if there are some ways that I can settle down. Is the voice too loud, are people looking at me a little differently, you know, whatever. But I have to admit, to this day, if I’m actively engaged in . . . oh, there’s a rapid card game, it’s kind of like double solitaire, where you might have four or five people playing and they’re all slapping cards down. I’m not very good at it, of course. But in the excitement of that, if someone gets their card there before I do, it’ll be very common for me to swear. Well, I play that game with my now mother-in-law, because I have since remarried, just last year, to a wonderful woman—we got married in Connecticut—but my mother-in-law can’t tolerate any swearing but wants to play double solitaire. So I work very hard not to swear, but it still happens. And she, of course, finds it very hard to understand that in this context it’s something I simply can’t control. So it’s a balancing act.

TP: You’ve written about the absolute necessity of neuropsychological work-ups for people who have had a brain injury. Are enough people getting them? Has the medical industry advanced since the time of your injury in identifying the injury and treating it?

CO: We’ve improved but we still have areas which we fall through the cracks. If a person has many injuries at once—you’re in an auto accident, you’ve broken your legs and you’re bleeding profusely and all those things and, yes, you likely have a brain injury—sure, you might have been unconscious at the scene but you go through surgery and everything, and you’re not doing anything in the hospital for several weeks because they’re setting all these things. And so in that person do we miss a brain injury? Yes, we still missed that person’s brain injury if they don’t have a prolonged period in a coma. Then when they get back to their more regular routine and they actually have responsibilities, if they’re expected to function at a high level and all of a sudden they can’t manage it and they can’t figure out why . . . it’s kind of like, huh, well, it must be depression, it must be fatigue, it must be this, it must be that. Normally it’s brain injury. So sometimes we miss the neuropsych exam in that person or in the person who has their injury at home . . . say you’re the housewife who falls down the steps. No one’s home. She’s unconscious for quite a period of time but no one knows that, and she wakes up but she doesn’t know if she was out for a moment or an hour. She’s broken her arm and people take care of that, but no one’s done the neuropsych exam. The husband is ready to divorce her because she stopped making coffee in the morning and has given up all of her volunteer activities because she can’t think of even doing any of those things anymore. And then someone says maybe we should do this neuropsych exam.

We still have areas in which we’re slow on the uptake. But overall, the medical community is beginning to open its eyes and become more aware of brain injury as a possibility for the symptoms we’re seeing.

TP: How long did you work on the book?

CO: It took me seven years. I couldn’t have written it without my mother because what I lack more than anything is the ability to organize, prioritize, plan, sequence—all of those executive functions of the frontal lobe. So I needed my mother to patiently sit there and say, “You know, this is a great paragraph and this is a great paragraph, but you actually have to connect them, and you actually have to have a whole chapter to get you from here to here. And look, here are your notes from this time in your life, and here are your notes from this time in your life.” You know, as a writer that’s so much of what you do is organizing, prioritizing, sequencing . . . I had to have someone else doing those pieces for me.

TP: You had a remarkable support system.

CO: Yes I did. I don’t think anyone manages to get to the other side with brain injury without an extraordinary support system. It does require your own internal motivation because you really have to continually work at this every day . . . you know, every day there’s rehab. So you have to put forth this incredible energy—no magic pills. You need a quality rehab program and you need a great support system. Now, that support system can be your church, it can be your local community, it can be a group of friends, it can be your family, whatever. But you need that support system. And I’ve been very blessed. My mom, she’s still a major factor in my life, and Marcia, and now my current partner—they make a huge difference in the quality of my life, but I also have a paid coach for that executive function–type piece to make the pieces of my week fall into place and make the things I can’t do to get to the other side . . . what can I do so that you can do that? You know, set it up so that my time is productive throughout the week. It is that filling in those little blanks. If you don’t have someone who’s patching the holes that you still do not do effectively, then it looks like your level of function is far below what it has the potential to be. So between all those things, and my trusty service dog, who’s sitting right here, it makes things happen.

 This interview has been condensed and edited for publication.