Traumatic Brain Injury as a Superpower

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COURTNEY WILLIAMS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

CARL MAGRUDER: I was a health care chaplain, and so I accompanied people with significant injuries, illness, and disability. I was the lifeguard who's sitting on that tall lifeguard chair. I wasn't in the pool.

WILLIAMS: Today, a conversation on traumatic brain injury and how acquiring one changed the life and work of a Quaker chaplain.

MAGRUDER: We are all temporarily able, whatever ability or disability we have. We will decline. To understand that you're still a person and a beloved child of God, that's essential.

WILLIAMS: That's all coming up on Disability Rap. Stay tuned.

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COURTNEY WILLIAMS: Welcome to Disability Rap. I'm Courtney Williams.

April is Brain Injury Awareness Month. According to the Brain Injury Association of America, 1 in 60 Americans are living with a permanent brain injury, and 2.8 million traumatic brain injuries or TBIs occur every year in the United States alone.

Today, we are joined by Carl Magruder. In August 2023, he was doing what he loved to do: ride his motorcycle. He got into an accident and, as he says, "Bonked my head." That "bonk" resulted in an extended hospital stay and a medically induced coma to give his brain time to heal. He was in the hospital for just over a month and then continued his healing process at home.

Carl Magruder is a Bay Area native. He earned a Master's of Divinity degree from Pacific School of Religion and followed his calling to become a hospice chaplain. Prior to his accident in 2023, Carl was a home-based palliative care chaplain in Humboldt County and then served as a chaplain at the Zuckerberg San Francisco General Hospital and Trauma Center.

Carl is an advanced practice board-certified chaplain with the Spiritual Care Association and is endorsed by the Religious Society of Friends. For our KVMR and Nevada County listeners, before pursuing a career in chaplaincy, Carl taught for four years at the Woolman Semester School right here in Nevada City.

Disability Raps co-hosts Carl Sigmond and Alexa Guerrero spoke with Carl Magruder on Friday.

CARL SIGMOND, HOST: Well, Carl Magruder, it is such an honor to have you on the show. Welcome. Can you begin by telling us a bit more about your motorcycle accident and then the first few months of your recovery?

MAGRUDER: Well, the honor is mine, Carl. It's great to be here. It's a good question. Can I tell you about the first few months of the motorcycle accident recovery, because the answer is not really. Brain injury is kind of a drag. One of the things it takes from you is the history of things. Of course, I've put it back together. I reconstructed it. I crashed the bike somehow. They think it was a single vehicle wreck, which makes no sense since I've ridden motorcycles since I was a teenager.

Then I spent a month in hospital before Mica insisted on taking me home, because she knew I wasn't really wanting to be in a skilled nursing rehabilitation center. I was home for a little while before I said, "Well, we could have soup for lunch. We had soup yesterday." She was thrilled because it was the first time I'd remembered anything from the day before. My memory loss is a lot of things in the 10 years before the wreck. What did I have for lunch yesterday? Off the top of my head, I don't remember.

SIGMOND: Can you talk a bit more, if you remember, about the decision to come home and not go to a nursing or rehab facility? What was that like for you? What was it like for Mica? For your family?

MAGRUDER: Yes. I think we're focused a little bit here today on my experience, but really the amazing thing is Mica, of course, because she was cohabitating with me as a person whose memory was normally functional. She camped out at bedside in the hospital for all of that time. Her relationship with my father deepened. My father is 83 years old, so he would have been 81 then or 80 and was a professional social worker, so used to institutions and dealing with people with altered capacities.

Mica knew that I didn't want to be in the facility and that it made me really anxious. I thought that, if I was home, I would be more like I was. Of course, that didn't really happen. It's a little funny because having been a healthcare chaplain for the last 15 or 20 years, I have spent a lot of time in healthcare facilities of different sorts, skilled nursing and old folks' homes and convalescent hospitals and mental hospitals and straight-up hospital hospitals.

It's not like it would be such a strange place or like I had a bunch of fantasies not based on reality. Of course, I was one of the care providers in facilities like that. As a chaplain, you just come in, and you're trying to nurture and encourage people in their body, mind, spirit, in their emotions. It's interesting to me that I so didn't want to go. I was the bad patient, Carl. I would take my IV out and throw it across the room. I was non-compliant. My favorite thing was to go outside in my wheelchair.

I was paralyzed on the left side of my body. They put me in a chair and they would take me outside, and then I'd come in and then 20 minutes later I'd say, "Well, we should go outside," because I'd forgotten. I knew that outside was where I felt connected to the universe, to the air, to the clouds. My moniker is the Earth Quaker because the core of my spiritual life is the Earth, is the environment. That was really healing for me.

SIGMOND: I want to talk a little about this incredible circle of care that emerged almost immediately after your accident. For our listeners, I should say that you and I have been friends for decades now, which is hard to believe. The circle of care emerged almost instantly and has been supporting you ever since. Can you talk a bit about that, what that meant, and how it changed you?

MAGRUDER: Well, yes, Mica really, she sort of put the call out. She started a website that was giving, I think, pretty daily updates about the state of me. People showed up. People showed up who I haven't talked to in years. Some of those contacts have been really ongoing. Some have faded into quiet again, but just an incredible outpouring and an incredible gift.

One of the things I thought about with regard to that system of connection, and I'm going a little bit on a tangent, I guess, but because of friends, even some professional friends, like I have a friend who's gotten into a form of counseling that was really helpful for me. We were motorcycle buddies years ago, and he has learned this technique.

One of the things that changed for me, Carl-- [laughs] that was funny. I was going to say another thing that started to change for me, but one of the things that started to change for me is I cry a lot. I didn't use to cry because I was a macho man. I live in El Cerrito, and I'm dependent pretty much on public transit, except when I go places with my sweetheart. I can't drive. I encounter a lot of the street and the people who live on the street.

What I know, like you say, about the community and the family support that I had, my sister came to be with me from Norway, and my other sister from Vermont several times. My aunt came, and my dad lives a mile and some away. What I realized, if I hadn't had that network of support, I would be the guy at the BART public transit entryway with a little cardboard sign saying cash for food.

Because of me and my history, I think there's a really good bet that that cash for food would have gone to cheap whiskey, and I would just be passed out there in a little pool of my own vomit. I think it's easy to think that, because we're this incredible industrialized nation with a social network of some kind, that we take care of everyone, but we don't. I still, two and a half years, have not received a penny of federal disability.

The network of friends, of course, primarily as a chaplain, I'm going to say, is about the heart and about the spirit and about the love, but there's practical aspects. If you don't have a network, it could be a very precarious thing. I am very grateful. Carl Sigmond came and taught me some stuff that I needed to know. We went for some walks, and we had some talks, and we still do. That's been incredibly precious, also, and valuable.

ALEXA GUERRORO, HOST: Hi, Carl. What do you wish more people would understand about people with TBIs?

MAGRUDER: One of the things that I will say, and it's going to sound sarcastic, but there is an aspect of the TBI that is a superpower. I'm not kidding. There is an awareness that I have that I didn't have before. I was a health care chaplain, and so I accompanied people with significant injuries, illness, and disability but I was the lifeguard who's sitting on that tall lifeguard chair. I wasn't in the pool, and so there was all kinds of stuff I didn't get. I didn't understand.

I had a patient last week in the hospital, an African American man, long-time kidney malfunction, who was pretty non-compliant about going and having the dialysis. The staff was really frustrated. Medical people want to solve and fix and do, and he wasn't playing the game. Suddenly, I could understand more of where he was with not wanting his life to be about spending, I don't know, 8 or 10 hours a week at the dialysis clinic. It's one thing if you're going to, I'm making air quotes, get better.

I've seen people take cancer treatment that is just insane in radiation, and we're going to cut out this whole organ and throw it away. We're going to fill you with chemicals that are so toxic that the nurse who mixes them wears a hazmat suit. That's chemotherapy, some chemotherapy. With cancer, it's going to go away. I mean, at least that's the reason to do the treatment. It's going to go away. With the kidney, it's not going to go away.

I like to think that my brain gets a little clearer with the TBI, but I also need to be in a space of going, this is the brain I've got. Let me rejoice and be glad in it. It's a deeper place to be when I am at bedside, and there's a temptation to go, "Oh, yes, you've got a trach. Well, I've got this scar from my trach." No, that's not listening. That's one-upmanship or something. I know I've got a trach.

When I'm talking to that guy with the trach in the voice box, I can be in that space energetically. I don't have to tell them anything, but it's deepened my work and my understanding. We are all temporarily abled. Whatever ability or disability we have, we will decline. To understand that you're still a person and a beloved child of God, that's essential. I was lucky with my circle of friends and support, for sure. Really blessed.

SIGMOND: So you are back at bedside. That is, I think, relatively new. Can you talk more about how that is going and what challenges you face?

MAGRUDER: Yes. I'm volunteering one day a week. There's no paid position for me yet at San Francisco General, the public hospital. The magic meeting place, the spiritual space, when I am visiting with patients, I'm making air quotes again, I am happy to say is still that sacred, vibrating space of unconditional positive regard, non-judgment, just openness to being a listening ear and an open heart. I'm a chaplain in the right space because my theology and spiritual beliefs are huge and wide and open and willing. I don't have to step over my own indoctrination in order to meet someone in their spiritual space. Lots of the time, that is SBNR. That's the abbreviation we use on the endless medical forms. Spiritual, but not religious. I changed it to spiritual and not religious because I didn't like that spiritual and religion were an either or, but they're an and.

That's been really deep, but I will have to be honest and say that the incredible level of bureaucracy is intimidating. I don't need to do it all now because I am a shadow of the staff chaplain who does the documentation, but I think I would need to change my old habit of charting all of my visits at the end of the day to charting each visit as it happens. Otherwise, I would forget. “Oh, I remember that Mrs. Jenkson was really sad. What was she sad about?” I might not remember, although I sort of think my heart would remember, even if my TBI has done a little something on my regular recall.

It's beautiful and it's meaningful, and I am of service. One of the funny things about a healthcare chaplain is that they're also responsible for staff. It's not just the people that the hospital is taking care of, but here's this ICU nurse who's just really stressed out and really sad about a child who was in and was damaged by a car wreck or something. That person is part of my sphere of concern also. I still function really well there, and it's neat. People remember my face. I might not remember their name, but there's connection there.

It's intriguing, but whether I can go back and do it as a 9:00 to 5:00 paid position, I don't know. I will also say, about this increased power, this increased capacity, you know that I am this goofy environmentalist. I don't mean this in some metaphorical way. I was visited in the early morning the other day by Julia Butterfly Hill and Greta Thunberg. You may know that Julia had a really gnarly TBI, and that was part of how she felt connected to the trees.

She felt part of nature and was able to sit in her tree, which I think she named Luna, for, I don't remember how long, more than a year. Then Greta Thunberg, she has a little bit different mentation also, and it's a superpower for her. I'm listening for how I am called to use my superpower, and I might need maybe a cape.

SIGMOND: Thank you, Carl. It's funny you bring up TBI as your superpower, because the last time we did a show on TBI, our guest said the same thing. Alexa, over to you.

GUERRERO: Yes. That's funny that you say that, because that is what I was thinking too. How has your way of communicating with people changed since your TBI, Carl?

MAGRUDER: Well, as a chaplain and as a cradle Quaker, as we might say, being silent and listening is something that I have valued. I partly have valued it because I've been very bad at it in my life. I do listen more, and I like to think that I do a pretty good job of listening under the words and sometimes might find a question there that leads us deeper, but there is a gift in being deeply listened to. That's kind of what I try to bring.

I will say, the other day, one of the ways that my change affected me that was really frustrating was that I was in a team Zoom with probably 12 professionals. The thing was possibly an ethics committee thing. The staff lawyer was in there and the ethics committee heads and the care team and psych and nephrology and all of this. I had something to say because I'd met the patient, and there was something about him that I felt they weren't hearing.

He was a problem to be solved in a way that won't cost the hospital too much money, and we won't get sued. I didn't trust myself to speak up. I never had that problem before. Our palliative care physician was very, very clear and skillful. The fact that our little team had visited this person in the morning was key. I didn't have the courage to speak. I questioned whether I was just wrong or inappropriate, or not remembering something, or was I emotionally triggered? I was feeling something. I have got to learn that.

Part of what I want to do is to err on the side of maybe speaking up when I shouldn't. Then people can go, "Okay, this is why you're wrong about that," or "Thanks for sharing, but--" as opposed to my being my own editor, so I'm learning.

GUERRERO: Thank you, Carl. What supports or services have been most useful to you and your family in the months and years following your injury? What are other supports you would like to see in place?

MAGRUDER: Wow. That is really a huge question. I was pretty lucky in that my left side paralysis resolved. They didn't need to do anything dramatic. We just needed to wait until my nerves reconnected. My left side and my right side are not symmetrical or terribly well coordinated. I guess I would say I had some help from natural processes there. Like I said before, the paucity of resources available, really astonishing.

I had very good care from Kaiser Permanente initially because I was under the care of the TBI expert. To give you an example, I think I can drive. [chuckles] Mica is not on the same page with me at all, but she's willing for me to try. I asked my doctor, could he fill out the DMV form about what I can and cannot do? He said, "You got to go see an expert outside the system. Kaiser doesn't do that."

Then I talked to the guy who took care of me, the TBI expert. He said, "Oh, yes, yes." He sent me a form that I can take to occupational therapy, and they'll assess whether I can drive. What care did I have? I had a lot of heart care, a lot of emotional accompaniment, like Carl said. I'll say something there, and I don't want to sound critical or self-pitying or whatever, but it does quite naturally dry a little bit over time.

I don't have so much care. Sometimes I spend the day mostly alone. Mica's working. Sometimes I feel sort of down, I get sad. I don't know what help exactly there would be for that, but it does me some good to hang out on Disability Rap for sure and to listen to other people's journeys with disability. Yes. I got my bees. I put them in the hive yesterday. I'm taking care of bees, which is good for my soul.

I think one of the things that I'm resisting is I still have ministry and work to do that is regarding the climate. You probably know that we're looking at runaway climate change by end of the century if we don't grow up. There's some signs that political leadership is actually devolving. It does me some good to be out there and doing some work to try to make the world a better place, a safer place to protect the sacred earth.

I think that there is also some work for me to do in terms of disability rights and activism, because I have seen it as a chaplain for years and years and years. Now I've seen it as a person who is probably living with permanent disability. I think it's important for all of us to have our shoulder at the wheel, because the superpower of awareness and compassion and empathy, I think it calls us to some pretty meaningful work.

GUERRERO: Can you say more about the intersectionality of disability justice and environmental justice?

MAGRUDER: I do think there is a connection in that we need better access for folks who might have mobility issues to be able to spend time in unmediated natural space. I worked in the Sierra Nevada foothills some years ago at a little boarding school that was out in the middle of nowhere, no pavement on the whole place. We had a student who lots of folks might have thought we couldn't accommodate.

Our intrepid school leader wasn't going to accept that. This person really was a good advocate, and showed us that all kinds of things are possible. It was really a collaborative effort, and everybody grew and learned in it. I think that's a space that we need to grow in terms of disability activism and environmental activism, just making that connection more available. I don't know.

I guess I have compartmentalized my brain too much. Maybe a TBI, which involves shaking that up, will help me to de-compartmentalize and find some meaningful connections between apparently disparate things. I appreciate that question, Alexa.

SIGMOND: Thank you, Carl, and just to note, I was that student who wanted to go to that boarding school in the Sierra Nevada foothills nearly 20 years ago. And you're right - t was challenging, but through a lot of creativity and perseverance we made it work.

I want to go back to that guy at the BART station and ask you about equity, equity of support, equity of care, equity of access to resources. You and Mica speak the language of doctors and professors, and not everyone does. How can we both support the Carl Magruders of the world and at the same time make sure that people who get TBIs don't end up down at the BART station?

MAGRUDER: Well, we could do a super cool podcast about disability and spread the awareness. I really hear you because I guess I was trundling along in the space, but also pretty complacent in a way that becoming disabled has changed. We are probably at a high point in human history at this point in the sorts of resources that we can provide to enable people to live full and meaningful existence, but we would rather spend all of our money on nuclear submarines. There's some fear that we can't afford to take care of people.

The Americans with Disabilities Act is an incredible landmark piece of legislation. What's the next step? I think there's a real need for us to creatively envision, but I don't have pat answer. I'm not just pretending that I don't, because I don't think I should say what's on my mind. I worry that, as things happen like changes in the economy, that there will be pinching of things.

Mica's work, my sweetheart, my fiancé, her work is been a lot in diversity, equity, and inclusion, which includes people like me who are brown skinned, or maybe people who are not primarily English speakers, et cetera, but it includes persons with disabilities. She has seen an amazing loss of funding for that kind of work, which might be where we get to explore what is the front edge of the wedge here moving us forward in the human experiment.

I'm going to keep listening for where to put my shoulder to the wheel, where I might want to speak out and be part of the community of activists who understand this thing that we are all human beings. We have different abilities and disabilities, and there's all kinds of ways that we need to create a supportive environment. On another day, Carl, you and I will talk about the implications of artificial intelligence, but not today.

WILLIAMS: That was Carl and Alexa's conversation with Carl Magruder for our show honoring Brain Injury Awareness Month.

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And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and me, Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We're brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. For Carl Sigmond and Alexa Guerrero, I'm Courtney Williams with another edition of Disability Rap.

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