Life with a Traumatic Brain Injury

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CARLY PACHECO, HOST: From KVMT and in partnership with FREED, this is Disability Rap. 

BARB FOY: My TBI is like my superpower! I just think it's given me so much more empathy and compassion for all people. Not a source of pride, but yes a source of pride. I would never wish a TBI on anybody.  

PACHECO: Today, a conversation with two people who live with traumatic brain injuries, as well as a service provider who supports people with this often misunderstood disability.  

ALEX BANDUCCI: With the lack of funding and support sometimes, you know, it's been on and off when, you know, things have been available in this community. And traumatic brain injuries are so common, and I think most people don't even realize, and a lot of people don't even realize that they have them. 

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

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco. 

PACHECO: Here at FREED we've recently restarted our Traumatic Brain Injury Program, where we connect people with others in the community who have similar experiences, and we support people to live independently. According to the Brain Injury Association of America, 1 in 60 Americans are living with a permanent brain injury, and 2.8 million TBIs occur every year in the United States alone. While working with these individuals here at FREED, we began hearing more and more stories about life with a TBI. And while there are common experiences among those living with traumatic brain injuries, we know like all disabilities that each person's journey is unique. For a glimpse into the lives of people with TBIs, we're joined by Barb Foy and Calvina McEndree ,who will share their experiences of having TBIs, how it shapes their present lives and their outlooks on the future. We're also joined by Alex Banducci, FREED's traumatic brain injury coordinator in our Yuba City office. 

SIGMOND: Well, Barb, Calvina, and Alex, welcome to Disability Rap. It’s great to have you with us. Barb, I want to begin with you. Can you just tell us a bit about your TBI, when and how you got it, and how your TBI impacts your day to day life?  

FOY: It was my last camping weekend of the summer, and I was on my mountain bike with my partner, and we'd ridden like 15 miles already. And we still don't know 100% what happened but they think my blood pressure plummeted. And as a bicyclist I knew to fall to the right of the white line. But I did not, I fell to the to the left of the white line. So I of course had a good helmet on, but I bounced a couple of times and got a TBI, and sheared my rotator cuff off my shoulder bone, and broke a bunch of bones. And what happened though, was a diesel truck was barreling down the road and you know, mountain roads are not that wide. And my partner was you know, trying to get me out of the road. Somehow at the last second he got the truckers, he you know he caught his eye. So the trucker starts pulling his horn and so the car that's oncoming caught, you know they connected eyesight, the truck was able at the last split second to swerve enough not to run me over. My partner thought at least the bottom half of my body there was no way that the trucker could miss it, but this guy was a phenomenal driver as well as this oncoming woman. And so I did not get run over, I was still meant to live obviously because here I am sitting in front of you on this lovely podcast. So I'm I still have work and service in my heart and soul. 

SIGMOND: And then can you tell us a bit more about how your disability affects your life now? 

FOY: I remember Cali saying this in one of our weekly book club meetings, like my TBI is like my superpower. Right, Cali? I've had more good days and bad, but every day is different.  

PACHECO: Barb would you say a little bit more about how your TBI is your superpower? I love that concept. 

FOY: I know it sounds kind of hippyish, but I still, or more so, I'm able to, like read the room a little better. On the good days. Um, I'm not as inappropriate. But I just think it's given me so much more empathy and compassion for all people. You know, not just foster family kids or, you know, school kids or elderly folks with autism. You know that whole, it's been… It's a not a source of pride, but yes, a source of pride. I would never wish a TBI on anybody. 

PACHECO: Yeah, I appreciate that perspective. I think that's, you know, a common thread that we hear from people with all types of disabilities, right, is that while there are challenges that come with a disability, there's also a lot of super powers. So Calvina, I might punt it over to you this time and ask you a little bit about your, you know, TBI, whatever you want to share about that, and how your disability impacts your daily life. 

CALVINA McENDREE: I was allergic to a lot of things as a kid. And so and they couldn't figure it out. So I had a lot of high fevers, a lot, meaning I'll be more specific, I would have pneumonia maybe twice, three times a year with 104, 105, temperatures. Delusions, it was, I would see things and you know, that weren't there because I had, I had high fevers. So, and I had a couple accidents as a kid, where I got concussions. And so it had been affecting my life before the car accident that I was in in 2007. I was in a car accident, and then I was in a coma for a month or two. I would be more specific, but shortly after, people in my family that were my caregivers passed away. So like my brother died directly resulting from his tour in Iraq. And then my mother passed away and my father. So I can't remember a lot of things.  

The things that I do remember, is relearning how to walk. And I forgot words. I had a lot of cognitive defects, confusion, shortened attention span, memory problems. I didn't realize it, that I was playing, and I have children, so I'm, I had an eight year old mentality when they released me from the hospital. So my children were teenagers and preteen. I remember my kids beating me at tic tac toe. And I was like, dumbfounded. There's no way. So it was a car accident. It was traumatic. I'm looking at the motor deficits, the sensory deficits, communication and language deficits, functional deficits, social difficulties, regulatory disturbances, personality or psychiatric changes all of that stuff. Except for the epilepsy. I'm like, wow, that's, that's me. 

PACHECO: I want to bring Alex into this. So Alex, is one of the staff at FREED to work specifically with folks with traumatic brain injury. And Alex, we know that, you know, the experiences of people who have had a TBI are really varied. Everybody sort of experiences that differently, but what are some of the commonalities that you see in your work? 

BANDUCCI: I'd actually like to define traumatic brain injury first. So a traumatic brain injury is an injury caused by an outside or penetrating force to your brain that leaves lasting brain dysfunction. So it is a little different than an acquired brain injury, an ABI, those come like what Cali was talking about as a child with those high fevers, and strokes and everything like that. Typically, with brain injury, the most common things that we worry about afterwards are, your sleep gets really messed up. And there's a lot of personality and mood changes that can be very difficult to handle, especially for yourself and your family and your caregivers. And then obviously, the thing that people struggle with the most that they bring to the table a lot is struggling with memory afterwards. There is commonly, most often there's a lot of trouble with being able to actually store those memories. So you have your long term memory, but some people don't even have long term memory after a brain injury. After some people experience a brain injury, if they have those level two or three, like Cali was talking about, those more moderate to severe that those two levels, those typically come along with something called PTA, post traumatic amnesia. And I have multiple consumers where that didn't just last a day or two, I have a consumer that lasted 15 years. She has 15 years of her life where she has photos and memories and her family to tell her what was there but she doesn't remember at all. And it's so traumatic and so hard. And there are all these people that she loves, but she can't remember. And a lot of times people struggle with like not intentionally hurting someone because you don't remember but it still can hurt. Like, Mom, you don't remember my fifth birthday, like you don't remember when I got my driver's license. And so they struggle so hard with that depression afterwards. And the expectation sometimes that people can still have. And then we see things like impulsivity and anger and that can leave lead to a lot of problems within their personal lives or even within the community at times. 

SIGMOND: Thank you, Alex, for painting that picture for us. And I want to just reiterate that a TBI can have a very different effect one person to the next on how the injury affects them. Barb, I want to bring you back here, and then ask Cali the same question in a minute. But Barb, what are the most common misconceptions you experience that you wish the world would know about your disability?  

FOY: Well, I got really emotional over that question, because, I, to most people, I totally looked physically fine. And I'm just, I'm just different. I mean, people that know me and love me, accept me how I am. But, you know, like I said, I continue to rehab, and it's just so interesting that just because someone looks like, just because I'm walking and talking and I'm able to do all things today doesn't mean I'm gonna be able to do that, to that level tomorrow. You don't have a TBI think there's no way you know, so and so I know has a TBR you know, it's just, I think that's the major, major one if I could say that. It's, I'm not in a wheelchair I, you know, don't use assistive devices anymore. anything like that? It's you know, like I said it's needed. But yeah, I'll stop. I think, I think that's good. 

SIGMOND: And Cali, the same question for you.  

McENDREE: Thank you. I'm gonna agree with Barb, and also with Carl on that, brain injuries are not the same, I think that's what he said. It is so difficult for me because, yeah, the ABI is when I was a child, but I did have a couple of TBI too. When I started learning about the TBI, because I was alone and I didn't have any help. I guess it's what it seems like to me. And with brain injury, that the disabilities in general, people just aren't educated, unless something happens to them or to a close person or they,  to them, they just don't know stuff. It's like everybody's broken in some way. Anyway, I believe everyone's broken. There's no exception, that everyone's broken in, in some way. I think the fact that we have disabilities that we are putting our effort into finding information about, it strengthens that, you know, superpower. You know, the empathy that it's difficult for people to not know. But at the same time when I'm saying that I wish people knew more about TBI, because we look like we're okay. We seem like we're okay. But that's like, like Barb was saying, I'm agreeing with that. Like, right now, maybe or, just people aren't paying attention anyway, they just autopilot through life. So like, no way Cali does not have a brain injury, you know.  

And so it affects in I have a brain injury, so then it affects me, like, in different ways, like than anyone can imagine, even if they have a brain injury, because they're so different. So I have to just have to work on my understanding of people, so that myself, so that I can, that's how I came up with, you know, what, everybody's broken, so I just have to fill, I had to just learn how to disengage or learn how to, but I have to, at the same time. It's difficult because I am the oldest person in my family that's alive, you know, and my kids. So there's that I feel a responsibility to learn more and to be more compassionate, or be more understanding. And well, sometimes, it's just very difficult. 

PACHECO: Thank you so much, Cali. And I think a lot of people with, we call that invisible disabilities, right, when that's not obvious when you look at someone that they have a disability. And I think that's a common experience for folks with invisible disabilities, that people sort of, like deny your experience a little bit, right? When if you're sharing that you have a traumatic brain injury, and people are saying, Oh, no, that's kind of a denial of your life experience. It’s hard. 

McENDREE: Well, unless, you know, that people are just broken, and that's why I'm like, I'm just like, please, God, show me more information on people so that I'm not so affected. It can't be, it can't be that difficult. I'm, by myself, I have don't have a caregiver, you know, now I have, by the grace of God, I have I have 24 hours supervision. I have qualified to be able to have done the protective supervision through IHSS. I give all the glory to God because I am not able to mentally, I just couldn't cognitively been able to do that. And it's very difficult for no support or financial distress, and be able to do that stuff. 

PACHECO: Cali, I think that you're jumping right into the next question that we had. So you're right on track with us. And what we're kind of wondering about is what supports have been most helpful? So I'll just summarize what I've learned/heard from you, is that learning about brain injuries in general has really been helpful to you and sort of understanding, but specifically having some IHSS, in home supportive services, caregiving has been a huge support. Barb, I wonder what kind of supports you've been able to obtain. And what's most helpful in your life? 

FOY: Definitely the IHSS has kept me in my home. You know, I used to need 24 hour care. And now, I've been able to live pretty successfully, alone for the last almost 10 years in July, it'll be 10 years. But I do have like 60 hours a month of IHSS hours, because there's a lot of things I can't do. But there's a lot of things I can do. But what really saved me was my neurologist gave me lots of resources, and one of them was locally our brain injury coalition, with Landa Bell Carson and Cindy Bale, I forget her name, but Ball, I think is their last name. And then through them working with them, they, I used to call and hang up, I talk and call and hang up. I was just really in a bad place. But they kept on, and kept on, and kept on. Her name was Vicki, she's not there anymore. Finally, I got an interview with their ongoing support and help with the Peg Taylor Center here in Chico. And like that, it's like an adult day health care center. And that's the ongoing rehabilitation, you know, RT, OT, PT. And even through COVID from March 2020, it was Peg Taylor without walls. And if it wasn't for BIC and Peg Taylor, these, I can't even say where I would be let alone alive, literally. And I've said that on another podcast.  

And you know, three years is a long time for everybody, right? (chuckles) But then I have two book clubs that I'm involved with. BIC, we've read more than 60 books over X amount of years. I'm actually in an international book club because of COVID. And then my people, music therapy, you know. I was in the hospital, I was so sick, and I would just dial into Zoom and no camera, I would just be in bed just listening to my people, you know, and that was okay that I you know, I would wave and try to smile on and that it got me through. And here I am. And that was last week in January I was in the hospital. So I just, I just have like, really loving, compassionate, for the most part, people in my life. Like even my medical Uber drivers, you know, well, if I throw up in the car, well, that's alright, you know? It's just, it's amazing. So I'm able to live my best life. If today is my last day I’m living my best life. Okay. 

PACHECO: Thank you so much for sharing. Yeah, absolutely. I wonder if I could bring Alex in here a little bit again. As FREED has done work with individuals with TBI, one of the things that we that's become abundantly clear is the lack of supports that for people to access. And so Barb is talking about a traumatic brain injury program in the Chico area, FREED has a traumatic brain injury program in Nevada, Yuba and Sutter counties. But there's lots of parts of the state of California and many, many other places that don't have any sort of traumatic brain injury program. And I will also say that our programs are, have very limited funding and resources, which is a problem. So Alex, I don't know if you've heard, probably some themes from the individuals that you work with about what resources are needed, that they're unable to access. And maybe if you want to talk a little bit about that. 

BANDUCCI: One thing is it's not even just the resources, like it's I honestly, I think this is something that Cali told me is after her hospital stay after her coma, they sent her home with some resources and some information, but she had just experienced such a traumatic event and they handed her this binder. And they didn't give anybody to support her in learning these things. And in she didn't have that family and it's not just Cali that experienced these things, It's so many people. Like and they don't, they might get handed a, you know the exact thing they need, but not even have the capability at that time to utilize it. So they really need more direct support directly after.  

And then ongoing, there are so many times, you know, if you're if your memory is not there, if you're on Social Security, or you're in project based voucher housing, or you're on MediCal, there are a lot of things you have to do to recertify that have deadlines and timelines. And some of them are so quick. And so unless people really have somebody, if they need that support to be on top of them, and helping them the things I see a lot, we've already missed this deadline. And at this point, you I can try and support you now. But there's nothing I can do past this. This is It's too far gone. And so they're just not getting the supports in time. Like Cali said she didn't, you know, she's had her brain injury for years and years. And she just found out about FREED not very long ago. And with the lack of funding and support, sometimes, you know, it's been on and off when, you know, things have been available in this community. And it's really hard.  

Traumatic brain injuries are so common, and I think most people don't even realize, and a lot of people don't even realize that they have them. I hear wild stories about people going into the hospital from a car accident and being in a coma and being fine and talking to them and say, well, no, I don't have a brain injury. They said I had a scan and everything looked fine. But they can't remember anything and their personality has changed and they're struggling and they're stressed and they're angry. But they don't even look into looking at a TBI because they've been told oh no, we did a CT scan your fine. 

SIGMOND: Thank you, Alex. I want to keep us going on this theme and ask Cali, what supports do you wish you had that you don’t have now to support you with your TBI? 

McENDREE: I would really appreciate some consistent help, because I really, really need it because I don't have, I'm the one that knows stuff. And I'm the brain injured person. I'm the one doing leg work and don't think that I'm…I think somebody else is more qualified to be doing this. Like, I'm, I just want. I would like some consistency and stability in that. But I'm thankful because I have a community, the book club that we did when we did the Seven Habits of Highly Effective People. That was my first book club and I was like, man, this is just amazing that I'm in a group with people that they get me. They are like me, and we're learning how to be effective within, that's when I told Barb, this is our superpower. This is awesome. 

PACHECO: That was our conversation with Calvina McEndree and Barb Foy, two people living with traumatic brain injuries. We were also joined by Alex Banducci, FREED's trauma traumatic brain injury coordinator. And that does it for the show. Disability Rap is produced and edited by Carl Sigmond. Courtney Williams is our production assistant. 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. I'm Carly Pacheco with Carl Sigmond for another edition of Disability Rap. 

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