EP223: Navigating Normalcy: Insights with Dr. Maria Stella Bonn

Redefining “Normal” After Traumatic Brain Injury: Dr. Maria Stella Bonn on Disability, Advocacy, and Checklists

On The Girl Doc Survival Guide, Dr. Maria Stella Bonn, Associate Professor of Information Science at the University of Illinois Urbana-Champaign, discusses her 2011 bicycle accident–related traumatic brain injury and her writing on disability and “normal,” including the idea that everyone’s baseline varies. She reflects on unpredictable health changes, including a breast cancer diagnosis two years after her TBI, and how recovery reshaped her views on capability and judgment. Bonn says she wishes others would assume people are okay and let actions demonstrate abilities, offering a story of walking her kindergarten-aged child to school during recovery. She emphasizes the importance of an advocate, describing how her husband ensured therapies occurred, pushed her to persist, and helped expedite replacement of her skull flap after an emergency craniectomy. She also discusses improving information handoffs in healthcare and co-parenting through simple checklists.

00:00 Meet Dr Maria Bonn

00:35 The Bike Accident

01:27 Normal Versus Disabled

03:26 Life Can Change Fast

05:05 Cancer After TBI

07:02 What Disability Means

08:37 Recovery With Her Child

09:17 Why You Need An Advocate

11:29 Medical Handoffs And Checklists

13:28 Closing Thanks

Transcript

Christine Ko: [00:00:00] Welcome back to The Girl Doc Survival Guide. Today I'm happy to be with Dr. Maria Stella Bonn. Dr. Bonn is an Associate Professor of Information Science at the University of Illinois Urbana-Champaign. She directs the Masters of Science in Library and Information Science degree program and is a Public Voices Fellow of the OpEd Project.

Due to a bicycle accident, she did suffer traumatic brain injury, and she has written about her experiences. I asked Maria to talk about some of the things that she's written.

Welcome to Maria 

Maria Stella Bonn: Hello. Thank you for wanting to talk to me. 

Christine Ko: Yeah, absolutely. Can you first share a personal anecdote?

Maria Stella Bonn: I can talk a little bit about the events that led up to my traumatic brain injury.

It's a beautiful day in May, and my husband and I got up and decided to bike over to the farmers market. I was a very accomplished cyclist. I rode many miles on the road, but this was a jaunt. We were just like, "Okay," to hop on the bikes. It was beautiful. I said, "Helmets." We both looked at each other [00:01:00] and said, "Nah." It was about a mile and a half to the market. And somewhere along the way I took a spill, and to this day we don't know why, how the spill happened. I think my pedal scraped the curb, and I went over. But I hit the side of my head and my brain did a coup, counter-coup in the head, and I was incredibly disabled for a long time. It was 2011. What year is it? It's been 14 years now. 

Christine Ko: Thank you for being willing to share your experience. I read your article in Visible Magazine, and you said, quote, "I am normal, I am disabled. Aren't we all?" That really resonated with me, and I'll put a link to your article in the show notes. Can you talk about what those words mean to you? What you were trying to convey? 

Maria Stella Bonn: Yeah. Because I was technically, perhaps legally, disabled for over a year, I was not permitted to return to my job at the time. They said, "No, you're not up to it." I didn't feel fine by then, [00:02:00] but I certainly felt normal. Because of that, and because of the ways in which I was different from before, I've just spent so much time since then thinking about what our baseline of normality is.

Before my brain injury, I was always losing my keys. I was famous for losing my keys. I would tell my students or my employees, "When I walk out, just look around, see if my keys are lying on a desk somewhere." But it was just normal. I was just one of those people who lost her keys.

And for a long time after my brain injury when that kind of thing would happen, and I still do this occasionally after 14 years, I would go, " Damn brain injury." And it's, what? You lost your keys before the brain injury, too. And that just caused me to think about what constitutes normality. I've spoken with other TBI sufferers. It's funny, I never knew there was this secret club of TBI people, but you discover them everywhere. One of the things I've talked about with them is like, "Oh, you could talk about brain injury forever." Because you never quite [00:03:00] know what the effects are. Why was I damaged in that way?

When I will reflexively, pretty much good humorly, blame an error or lapse on the brain injury, my family now says, "Oh, I made that mistake last week. Guess I have brain injury too, right?" It's, what is normal? What's our baseline? And, certainly as I recovered, I felt more capable in many ways than some of the people around me who were completely normal. 

Christine Ko: Yeah. To go back to your story: that it was a beautiful May day back in 2011, and, you were just gonna do a very short bike ride to the farmers market. It was just a totally unexpected bicycle accident. And that also resonated with me in the sense of: we don't really know what's in store for us. It can be a beautiful May day and we think that all's going well, and then to this day you're saying you and your husband don't know exactly what happened. Maybe the pedal hit the sidewalk. Things happen, and why did that event even [00:04:00] have to happen at all? Just in the sense that we can't predict the future and what normal might look for us one day versus another.

Maria Stella Bonn: Yeah, there's a book by a journalist that was a war correspondent called In an Instant which is about him suffering traumatic brain injury from an injury while he was reporting. But it's about that. He was doing a fairly dangerous job, right? But still, he was not prepared at all, right? And then suddenly everything was different. 

Christine Ko: Yes. I've had a couple of people in my vicinity who have passed, just recently, like within one to three months. Both individuals who passed were suffering from cancer. That made me realize again, I don't really know how long I'm gonna live, much less what my normal might be, even later today.

I bring this up because I feel like at the same time, even though I know this and I recognize this, I wake up every morning with either the optimism or the foolishness to assume that [00:05:00] I'm gonna end the day sort of feeling the same normal that I did in the morning.

Maria Stella Bonn: Yeah, I was actually diagnosed with cancer two years after my brain injury and was just getting back to what the world considered normal. I had a new job. It had just started. Then I had a breast cancer diagnosis, so it's kinda, " Crap, here we go again," right? You could say at some level this was just bad luck, right? But I might have been better prepared to get through it because of the brain injury. I'm not sure. There was a certain level of "Okay, now I have to do this." 

Christine Ko: Thank you for sharing that. I also had breast cancer diagnosed in late 2022. Since my breast cancer diagnosis, I have felt more of a sense of gratitude for health, and also a sense of healthcare. I feel like the care I got was great, but it's not without side effects and consequences and changes to normal, whether it's appearance...

Maria Stella Bonn: Right. Mm-hmm ...

Christine Ko: [00:06:00] Or chemotherapy brain fog or... 

Maria Stella Bonn: Oh, yeah.

Christine Ko: As you say, we all have some degree of disability at different times.

Maria Stella Bonn: Yeah. I'm left-handed, and I will often banter with people and also complain about being left-handed in a right-handed world, right? I'm a minority, and there are some things that don't work for me because they're designed for the majority. Am I disabled ' cause I'm left-handed? I'd have a better chance of being a pro baseball pitcher, I think. But again, it's where you say normal begins, right? 

Christine Ko: Yeah, exactly. In sports, as you say, being left-handed can often be an advantage. It's not always, but it's because the minority of people are left-handed, and so it's unexpected. The left-handed athlete can have an advantage. And I think that's true in general, that we do have differences among us, and oftentimes that difference can be disadvantageous, but sometimes it is [00:07:00] advantageous. There are advantages to it.

In terms of disability is there something you wish everyone knew about disability or specifically traumatic brain injury?

Maria Stella Bonn: I guess that in recovery and coming out of it, it's helpful not to be measured or judged with the idea, oh, she was injured, right? Her brain was really hurting. Is she okay? I think I would like people to come in with the assumption that you're okay. There'll be mistakes and errors in judgment and tripping over my own feet, which I've done since as long as I could walk. I'm congenitally clumsy. But to say "Okay, we're going in assuming we're all normal, even if we're different." And then let accomplishments and actions and capabilities be demonstrated rather than try to judge whether they're present or not. 

Christine Ko: Yes. I get that. I think it relates also back to when you said you've always been congenitally clumsy, you've [00:08:00] always tripped over your feet, whether before the bike accident or not. And similarly, you said earlier you've always lost your keys. To give ourselves grace, individually, and to give others grace in terms of, what can someone really do? I feel like it's sort of like being a parent. Especially like with that toddler, less than age five stage, where they're really trying to learn a lot of stuff and learn a lot more independence, and you can't assume they can't do things because they're rapidly acquiring skills. If you watch them and they really can't do something, you help them. And there's no judgment. And if they can do it, it's "Yay, great, you can do this now."

Maria Stella Bonn: I had my accident, and one of my recovery activities was to walk my kindergarten kid to school in the morning. He was just short of a sixth birthday, and I would be walking him to school as a recovery activity. And he and I would have this little tussle over who was more capable of checking both ways before we crossed the street. He [00:09:00] was acutely aware of my injury and wanted to take care of me as much as possible, so he wanted to be in charge of crossing the streets. We'd have this little tussle at every street corner. It's, "Let me check, Mom. Let me check." So it's really, who was more capable? I don't know. We made it across the street all the time.

Christine Ko: That's a really cute story. Is there any advice you wish you had known earlier?

Maria Stella Bonn: What became so important to me as somebody recovering was the importance of having an advocate. My husband was a famously good one. My doctors and nurses would say to me, he's really good at advocating. He was in there, checking on things, making sure I was getting the care I needed, that people were keeping track of me. I don't know if I would've been capable of it, but it certainly helped decrease worry, and it made my care more effective.

Christine Ko: Are there any specifics of what you mean by an advocate?

Maria Stella Bonn: He was on top of making sure that my therapists were actually showing up. So I had cognitive therapy and physical therapy and [00:10:00] speech therapy; that I was adhering to that. Making sure that I didn't talk them into letting me off easy, 'cause I would get tired and I'd be like, "We're done." He'd be there saying, "You gotta be tough with her. Make her stay with this." But also we had a long period of time where I had an emergency craniectomy, and my skull flap was in the freezer somewhere. And they were just taking a real long time to put it back. He's a librarian, so he does his research. He would be talking to people and say, "Really, it might be helpful to get that thing back in." And he pushed and pushed and we were finally able to do that. And it did make a dramatic difference in my capability when I got that back in. So that's one example.

Christine Ko: So an advocate is on top of things that definitely need to get done; for example, physical therapy in your case. But also just task and organization ability, but then also pushes the person they're advocating for a little bit, like just enough beyond maybe what you think you can do in a given day or are capable of, to [00:11:00] help you along, in this instance, towards recovery. 

Maria Stella Bonn: Yeah, for sure. For sure. I had this one great physical therapist who was very intent on my standing up out of a chair without holding onto things, but just being able to rise to my feet. She wanted me to do it properly, too. She's very good. I was pretty physically weak at the time. And we'd come home, and John, my husband, would say, "Okay, six more times." It was him reminding me of what was good for me. That was helpful. 

Christine Ko: Yeah. Great.

Maria Stella Bonn: I had a former mentor who, at the same time as I was recovering passed away from cancer, and he was having a long bout of going back and forth in the hospital. He studied information and how people communicated, and his last work was on information handoffs. He was actually inspired by his time in the hospital. It's like when the nursing shift changes or a new doctor comes in, how do things get communicated about the [00:12:00] patient? I thought it was fascinating. He shifted that to also looking at divorced parents who are sharing custody. When they hand off the kids, what is the necessary information to communicate? Whether it's they've got a game or they ate lunch or whatever. He was studying this, and as I became aware of that work, I started watching my medical team. I worked with them pretty closely for two years. Like, how did they hand off information? Did they remember? Were things written down? And actually that relates to the role of the advocate too, because when my husband was there with me, he would often say, "Hey, I don't think you mentioned that," and would help make those connections, and those seemed really important.

Christine Ko: In terms of handoffs and the information given, do you have any conclusions or thoughts on how to do that better?

Maria Stella Bonn: Partly speaking as somebody who shared custody of a child myself, and we had very friendly handoffs with the co-parent, but it got very routine. Even if it seemed silly, it would be like, "Okay, school, friends, [00:13:00] health, meals?" Like just establish what needs to be communicated and make sure you go check, even if there's nothing to say. That was helpful.

Christine Ko: That makes sense. So actually you're recommending to have sort of a checklist. Yes. Checklists are a way, I think, to help us in our thinking patterns, and so it would probably help with some kind of handoff for medical information or for a child that you have joint custody for.

It was really a pleasure to talk to you. Thank you again. 

Maria Stella Bonn: Thank you. You're doing good work. Look forward to seeing what happens.