Speaker 0 00:00:00 Do you ever get stuck in focusing on what you can’t do after your brain injury? You’re not alone. My guest today, Carol talks specifically about how to get through those triggers from your injury, from grief, and how to move through them. Carol Starr is from Maine, and I first met her at our local Brain Injury Conference. Carol is now a national keynote speaker, the author of the award-winning book to Root and to Rise, Accepting Brain Injury, and the founder facilitator of Brain Injury Voices, a nationally recognized survivor volunteer group. Some key points today is really to find something you’re good at, find something that you can do. Carol really goes into depth from her perspective on how to do that and really find a community of survivors. She says there’s such magic when we talk to one another. And lastly, to have strategies for when grief comes up. I’m so excited to share this one with you guys. Hi everyone. Welcome to the TBI Therapist podcast. I’m your host, Dr. Jen Blin shot, where we explore the heart of brain injury. Hi, Carol. Welcome to the TBI Therapist podcast. It’s so great to have you. Uh, I know you from our state, so we’re both from the state of Maine.
Speaker 1 00:01:44 Thanks, Jen. So I’m so glad to be here today.
Speaker 0 00:01:47 Awesome. So I wanted you to be on the podcast because I heard you actually give a talk at our local brain injury conference, and I think part of that journey was you kind of wanting to be a keynote speaker. So that was one of the, one of the reasons why I was like, Oh, I have to have her on and talk about maybe part of that journey. So maybe you can start with just sharing with the listeners about, you know, a little snippet about your brain injury and then maybe a little bit about where you are now.
Speaker 1 00:02:19 Absolutely, yes.
Speaker 0 00:02:20 Okay.
Speaker 1 00:02:21 I had my brain injury when I was 32 years old. Um, I had been, I was actually, I was a teacher in my previous life and I was on my way from one teaching job to another when I was broadsided on the driver’s side by somebody going about 50 miles an hour. And that is the, the accident that changed my life forever. It’s what I got a brain injury from. And my injury is classified as mild. I Oh, how, I hate that word. Mild, because as as we know, <laugh> Yes. Mild has nothing to do with the, um, the symptoms. I mean, I mean, I’ve been living with this for nearly 22 years. It was 1999. It was July 6th, 1999 that I had my injury. So nearly, it’ll be 22 years in just a few weeks. But even though it’s mild,
Speaker 0 00:03:07 I almost wanna stop you right now. Just Okay. You’re digging into the mild. Just, just tell the listeners a little bit about mild TBI and why It’s kind of a misnomer.
Speaker 1 00:03:16 Yes. Because the word mild, all it refers to is how long I was unconscious. I was unconscious just for a brief period of time, maybe a few minutes. And that’s all it means. It has nothing to do with the severity of the symptoms. Um, that most people with mild injuries, yes, they do go on to recover probably what, 70, Like 80, 85%. But
Speaker 0 00:03:37 There is majority, Yeah,
Speaker 1 00:03:38 There is a percentage of us that for whatever reasons are left with a lifelong disability, and I am in that percentage. Um, and so now when I, when I tell people I had a brain injury, I just, I don’t even say mild anymore because mild, it sets up an expectation in people’s heads of no big deal. But yet this is an injury that it drastically changed my life. I mean, I went from a, like a young professional building my career to unable to function, to getting lost in familiar places, to unable to teach anymore, to calling my mother from the bread out and the grocery store because they were out of the brand I bought and I had no idea what to do. I stood there for like half an hour, just completely lost, you know, to having, you know, I’ve had more friends and family have to rescue me because I would get places and get overwhelmed.
Speaker 1 00:04:35 All things that were just so not who I was in the past. Um, and there was a tremendous grief over, I’m not the person I used to be. I can’t do what I used to do, um, because of brain injury. Fatigue I still deal with, with mental fatigue. Um, sound sensitivity. I was a musician before I was a violinist. I was a singer. And because of the sound sensitivity, I mean, there was a time when if a plane would go overhead, I would duck. Um, because it sounded like it was coming into my house. I have fallen because of sound before because it overwhelms my system so much light sensitivity, difficulties with balance, difficulties with concentration and attention. All of those things that so many of us living with brain injury have to deal with. Um, and it, it changes how we think about ourselves.
Speaker 1 00:05:29 It changes what we know about ourselves, how we, how we react to things. And this brings on a tremendous feeling of grief. It’s like, I didn’t die. I’m, I’m still here, but yet my sense of self-id. And you look in the mirror and you think, Who am I? Who am I now? If I can’t be who I used to be, who am I now? I know my mother died. It’ll be, it’ll be 11 years, um, this summer. And honestly, the grief over losing myself for brain injury, it was worse than the grief over losing my mom. Not that the grief of losing my mom wasn’t bad. It was, Yeah, yeah. But the grief over losing myself, it was worse.
Speaker 0 00:06:09 Yeah. I, And maybe we can just kind of dig into that a little bit because, you know, I think that, and I told you in the pre-interview that I, I found as a therapist doing this for the last 10 years working with brain injury that I needed to become a grief therapist. Mm-hmm. <affirmative>. And that the loss of self was really so profound and deep that, and I, I don’t, you know, I will talk more maybe about ambiguous loss in the context of brain injury. You probably know a lot about mm-hmm. <affirmative> <inaudible> as research. Yeah. So just talk to me about how, how that loss maybe like in the context of your mother, you’re saying this one was way more so just maybe speak to that a little bit
Speaker 1 00:06:53 Because I didn’t know who I was, because over, over time into adulthood, we build up this idea of who we are as people. And all of a sudden you can’t, It’s like you can’t count on yourself anymore. You don’t know how you’re gonna react in any given situation. You lose some of your independence. I mean, I had been an independent person, you know, and suddenly I was having to call, you know, family and friends for help on the most basic of tasks. I mean, I ate cottage cheese. I don’t even, I don’t even know why cottage cheese, but I ate cottage cheese for dinner most nights, cuz I couldn’t figure out what to cook. I’d open the fridge and look and go, Oh, that looks confusing. Mm-hmm. <affirmative>, um, I still, when I get overwhelmed comes the cottage cheese <laugh>. Um, I know what I, when cottage cheese creeps back into my life too much.
Speaker 0 00:07:40 That’s, it’s like one of those like warning signs that it is, I’m pushing my brain injury symptoms too much or like, Yeah. Interesting, interesting.
Speaker 1 00:07:48 One of the, the people in my life will ask me, All right, how much cottage cheese are you eating? Carol <laugh>. Then they know, Okay, she’s doing too much. Um, and so it, it, it does trigger this tremendous sense of, of grief. But yet it’s hard to talk about because people say, Well, you should be so grateful that, that you survived that accident. You’re still here, you’re still with us. And it’s hard to explain, especially in the early days because you don’t have any language for it. Because it, it’s, it’s not a kind of grief I had ever experienced before. This ambiguous loss, this loss when I, I had grieved before people had died, but I’d never had this kind of grief before. And there were so many times when I thought, I can’t do this. I am not strong enough for this. This is gonna break me. Mm-hmm. <affirmative>, Um, because I think this is partly personality. I am, I’ve always been kind of a type A person. I, I joke that brain injury turned me into more of a type A minus person, um, <laugh>. But
Speaker 0 00:08:52 Yeah. I saw you were like valedictorian and you were, you were doing like a whole lot before your brain injury.
Speaker 1 00:08:59 Mm-hmm. <affirmative>. Yes. And every, every therapist that I saw told me that type A people like me had a particularly difficult time accepting brain injury. I feel like I was the poster child <laugh> for that. Um, because I couldn’t see a way to not be the person I was. So I kept trying and trying and trying to get back to who I was. And every time I would try, I’d fail because it was, it was simply too much for me. It was too much for my brain what I was trying to do. Um, I remember there was one time I was meeting with my counselor, this was like a few years in, somewhere in that vicinity. And she said to me, Carol, is it possible for you to accept that you’re not gonna make a full recovery? And Oh, that, that question, it just, it hit me like a ton of bricks and I just, I started sobbing like the, like the can’t catch your breath. Like the hysterical kind of sobbing. Yes.
Speaker 0 00:09:51 I called it The ugly cry comes out. Oh,
Speaker 1 00:09:53 It it, wait. Oh, it was, it was so the ugly cry. Um, but it was a, it was a pivotal moment. It was one of those aha moments when I realized that that old life, it really was over mm-hmm. <affirmative> that I had been comparing everything I was doing to the old Carol. And she was really gone. That I had to make a pivot. Um, and it was, it was the beginning of, of stepping away from who I was and stepping into who I am now. Um, because I couldn’t move towards a new carol when I was stuck in the model of the old Carol. Um, but it’s, it’s, it’s not easy to get there. It is a, it’s definitely, it’s a process mm-hmm. <affirmative>, um, it’s not just like a, an overnight light bulb kind of thing. <laugh>
Speaker 0 00:10:45 Yeah. But I think having that realization that, you know, I won’t be the same person mm-hmm. <affirmative> that I was before this and that, that is a tremendous, I think, moment of just weight of loss that
Speaker 1 00:11:01 Yes.
Speaker 0 00:11:01 Was probably put upon you in, in one moment.
Speaker 1 00:11:04 Mm-hmm. <affirmative>. Yes. And what’s interesting to me is, um, my counselor, she came to see a speech that I gave, um, somewhere after that. Um, when I talked about that moment, and she said afterwards, she said, Carol, I don’t know if you realize, but I had been asking you versions of that question for months and months prior, but it was on that particular day that it, it hit me like that cuz I wasn’t before that, I wasn’t ready to completely process that question. So, you know, I think that you just never know, you know, when is gonna be the right time for us to hear what we, what it is that we need to hear. And sometimes we need to hear those things over and over and over again before it’s gonna be that time when I’ve progressed far enough in my journey to, to hear it, to let it sink in, to be able to act on it. Cause I, I thought that was fascinating what she said, because I had no idea that she’d been saying that to me because it had just gone kind of over my head because I wasn’t ready to process it.
Speaker 0 00:12:09 Yeah. I mean, that, that makes a, a ton of sense that, you know, being in the right, being in the right frame of mind mm-hmm. <affirmative> and, and I think, you know, my therapist self thinking, having enough resources to be able to say and be comfortable with Yeah. I’m, I’m not gonna be the same. Mm-hmm.
Speaker 1 00:12:28 <affirmative>. Yes.
Speaker 0 00:12:29 And, and it’s probably takes a longer time to say and that’s okay. Like the second part. Yes,
Speaker 1 00:12:33 Absolutely.
Speaker 0 00:12:34 Maybe talk a little bit about like, your journey through acceptance and how, what that looked like for you. Mm-hmm. <affirmative>,
Speaker 1 00:12:40 You know, it started I think with, I call it this little voice inside me, that there was this little voice inside me that was starting to say, make something, which was really weird to me. Mm-hmm. <affirmative> because old Carol was not a person who liked to do things with her hands. So I, I kind of ignored this little voice for quite a long time. Cause it’s like, what the heck is that all about? <laugh>? I, I don’t make things. This is not who I am. But yet there was this voice that said, Make something. So eventually I said, Well maybe I, I needed to listen to it cuz I was getting tired of trying to go back to my old life and failing. It was wearing me down. Mm-hmm. <affirmative>. Um, so I then I didn’t know what, didn’t know what to make. I went to the craft store once and I got completely overwhelmed.
Speaker 1 00:13:24 Just puddle of tears. Um, I talked to a friend and she said, Well try paint by number. I think she said that because her daughters at the time for doing paint by number <laugh>. Um, so back to the craft store, I went, I got a paint by number and that was something that was simple was this little sun. I could actually do that. Hmm. And at the time, I could only work on that for about 15 minutes at a time. I’d be so tired, I’d have to have to take a nap and I’d have to rest afterwards. But it was the first thing that I had tried that I actually had success at. Cause everything else I had been trying so hard to go back to my old life I just failed at because it was too much. Here was something small that I could be successful at.
Speaker 1 00:14:10 I liked seeing the colors come together. Like I, I could, I could see that as I worked, I could work at it longer. Over time I could see my attention was getting better, my concentration was getting better. And that, that feeling of success, that was addictive to me. Mm-hmm. <affirmative>, that was like, I wanted more success. Um, because I, I felt like I’d been without it for so long, you know, by, by that point by for years I’d been at without that feeling of accomplishing something. Um, and when I finished that paint by number, it’s like, well, what else can I try? So I, I got into jewelry making. I’ve done cross stitching, I’ve done photography. And then that led to, um, the rehab hospital where I had my treatment. Um, they noticed that the jewelry said, Well, maybe you could teach other brain injury survivors how to make jewelry.
Speaker 1 00:14:59 Cause I knew that I’d been a teacher. And that gave me an opportunity to, to use the skills I still have as a teacher to just use them in a different way. Cause I can’t teach in the way that I used to. That’s, that, that has gone forever. But I’m a teacher at my very core. It’s just, it is just who I am. And this gave me that opportunity to, to be that person again, to teach something. Um, they had a, they, they gave me a little space in the, the little, a kiosk where I could sell my jewelry and people actually bought it. And that was like, that was so rewarding to me. And I started to feel like I’m not just a professional patient, that maybe I have something to offer the world. That I am not just this endless bucket of need where people always to help me.
Speaker 1 00:15:47 That people started to ask me, Well, could you make something for me? I, I started making gifts for people and it was this process of finding out who am I now as a brain injury survivor. Um, and the more crafts I did then, um, at the main Brain injury conference way, way back in 2003, <laugh>, I was invited to, uh, they were doing a workshop on creativity. And I was in, I was invited to have a little table where I could display my crafts. They said, We, we’d like you to do a little talk, like all of like five minutes long. And I, that was my first opportunity to speak publicly about the brain injury. Oh. I was so nervous. I think I got up there mean my, my knees like were shaking the entire time I was up there. I was really glad I was behind a podium so nobody could see my knee, my knees shaking. But when I got up there and I spoke, even though I was so nervous, I had this overwhelming feeling of I’m home.
Speaker 0 00:16:40 Yeah.
Speaker 1 00:16:40 This is what I’m supposed to do. This is where I’m supposed to be. And it, it was at that conference, my, my, my mother went with me because at that point I couldn’t do these things alone. She’s sat at the table with me, um, and my mentor, Bev Bryant, she was giving the keynote. And I, I watched her like stride across the stage talking, and I was mesmerized <laugh>. Like, Look what another survive. Well look what, what somebody could do. You know, could I, like, could I do that? I, I didn’t see any way at that point how I could ever do that. But a seed was planted. Um, and I knew from that moment that I wanted to be Bev. I wanted to, you know, she’d written books, she’d done speeches. Um, and over
Speaker 0 00:17:24 Time, I remember you talking, I remember you talking about her and when I heard you speak Yes. And you were just, I, you kind of gave her a big nod in that talk. I don’t remember quite, it was like six years ago when you, when I was in the room with you. Uh, but I just remember that she was a much a part of that.
Speaker 1 00:17:42 Yes, yes. You know, and I think that that is one of the pieces of acceptance, especially as, as survivors, is being able to connect with other survivors that, you know, I gain so much, you know, being mentored by Bev. And now that I’m a long term survivor, I mentor other people, like through the support group, you know, that, that I co-lead with other members of my, my, um, volunteer group, Brain Injury Voices. That when we can connect as other survivors, because it’s so hard to explain this injury to other people that sometimes some of the symptoms we talk about, people say, Well, that happens to me too. Not quite. Like, you know, I still have mental fatigue. I get tired every single day. I nap every single day. It is just part of, of what I live with. Um, you know, and people will say, Oh geez, I wish I could take a nap every day. It’s like, no, you really don’t.
Speaker 0 00:18:37 Right.
Speaker 1 00:18:38 The idea, it might sound nice, trust me, the practice is not so fun every single day. You know, I got a few good hours in a day and that’s it. Then the fall rolls in and my day is done. Mm-hmm. <affirmative>. Um, but being able to connect with others who share the journey to know that we’re not losing our minds. That what we’re go, what we’re experiencing is, is indeed brain injury. It is part of the thing. And we can help each other along the path. So I think that’s a really important part of acceptance, is being able to connect with others. And I think we need our therapists, especially to help us with that piece. Especially in the beginning, because it’s a, it’s a big deal to walk into a brain injury support group. Mm-hmm. <affirmative>, it’s hard to do. I know, um, I went to one first it was a room full of people crying. And I, like, I never went back. It was too much for me. Like, I can’t, I could barely deal with my own emotions, much less anybody else. Oh,
Speaker 0 00:19:36 Wow.
Speaker 1 00:19:37 But then went with, with a therapist to another one. And this one had a more positive focus. Not that it didn’t start with talk about hard things, but with more of a strategy, you know, focus. Um, and now one of the, one of the facilitators of that group. Um, but yeah,
Speaker 0 00:19:53 I
Speaker 1 00:19:54 Never would’ve gone, I never would’ve gone if the therapist hadn’t gone with me, hadn’t made that bridge. Helped get over that help. Because, you know, the way I think about it now is that, you know, our time with our therapist is brief. It’s probably gonna end too soon just because of the realities of insurance these days. And, but, you know, things like support groups and mentoring, those things can last much longer. Um, and that when our therapist can help us to get to those pieces, it’s such a, it’s such a tremendous gift.
Speaker 0 00:20:25 Yeah. Yeah. I was just thinking as, you know, I’m a therapist, so, um, and you, were you talking about a mental health therapist or like a OT or
Speaker 1 00:20:34 Speech therapist? Um, there was a recreational therapist who helped me get to the support group.
Speaker 0 00:20:38 Awesome. Yeah. And I, you know, I kind of see this in my work with, with folks around getting into the community. That’s always one of my goals. Mm-hmm. <affirmative> for my, my therapy clients is to get them connected with other survivors. Mm-hmm. <affirmative>. But I think there, there is a hesitancy that I find because number one, I think finding the group seems overwhelming to them. Mm-hmm. <affirmative>, it’s like, okay, now I have to figure something else out. Mm-hmm. <affirmative>. So I think the bridge that you’re talking about of having someone go with them, um, and so may, I’m even thinking as a therapist, like maybe forging more relationships with mentors like yourself, you know? Mm-hmm. <affirmative> or other people that are in their community. They can say like, Oh, you know, call Carol. She’ll go with She’ll, she’ll go with you. Or, you know, call Bill down in South Portland or whatever, you know, people are located mm-hmm. <affirmative>. So yeah. I think that’s a really important point that there probably needs to be a bridge for most people.
Speaker 1 00:21:34 Yes. Because, you know, in those early times it is, it, it’s so overwhelming because there’s so much of life is overwhelming and it can feel like just one more thing. And you don’t even know at the beginning how, how beneficial it can be because you just don’t, you don’t know what you don’t know. Yes. Um, and people say, Oh yes, you should go to a support group. But unless you, if you’ve been to one and to know the, the value, then, uh, then it’s, it’s just not something that might not seem as important as other things. Um, but, you know, and the support group that we, that I lead, I mean, we see such growth in, in folks. It’s remarkable. Like over, over time. Mm-hmm. <affirmative>, um,
Speaker 0 00:22:18 Can you tell me maybe a little bit of a story or not, maybe not of one person, if you know, but maybe just like a journey of seeing like a person come in and like what they gain from, from coming to a group that you run.
Speaker 1 00:22:32 We see people who come in and they’re angry. Um, that, that this happened to them. That they can’t get better. Um, then and over time to, to finding acceptance, to finding new ways to be in the world, to taking, to trying new activities, um, to coming into themselves to say, Oh, what, I’m gonna try this. I’m gonna try that. And people kind of will come and report on, on what they’ve done, share, you know, share their successes. Um, see, we see people try things that they haven’t tried before. Um, knowing that they have the support of the group that they can is a place to come and talk about, you know, all of all of that. Um, we talk about how like early on in the journey, it’s all about how much, how different we are. But this, eventually we accept you can how the changes. And then it becomes about how we’re the same. Um, for example, like, you know, there’s a lot of ways I’m very different, but I’m still a teacher. I’ve just found a new way to teach. And so we watch people on that journey of, of kind of coming to terms with the, the changes. And then folks who are teachers finding new ways to teach people who are business people, finding new ways to be in business, finding new ways to, um, to spend time with family, new ways to make art, whatever, whatever it might be. Um,
Speaker 0 00:24:10 But trying to get, and, you know, figure out what in that person is still the same. The imagery that comes to me is like, um, we talk about the butterfly, I think a lot in brain injury, but the caterpillar and the butterfly and that journey. But the ca the butterfly and the caterpillar are still the same creature, even though they’re very, very different. And so that’s why I think it’s a cliche kind of to say like, you know, spread your wings like a butterfly, but not thinking about the cocoon and the darkness of the time that it takes for that transformation to, to really happen.
Speaker 1 00:24:40 Yes. Right. And basically the, the, the, the caterpillar turns into goo before it turns to the butterfly. And, and that’s kinda what happens to us. We turn into goo <laugh>.
Speaker 0 00:24:56 That is great imagery. Cause I feel like a lot of brain injury survivors would so identify with that. Cause they often, my brain is, they’ll tell me, My brain is mush. I’m the fog. The yes, yes,
Speaker 1 00:25:09 Yes. Um, and the the goo is part of it. And I think we all go, we, we do that caterpillar butterfly thing kind of over and over again. Um. Yeah.
Speaker 0 00:25:24 Makes
Speaker 1 00:25:25 Sense. And that’s, and that’s okay. And learning to look at life as the caterpillar or as the butterfly, when, when isn’t necessarily better than the other. My old life wasn’t necessarily better than this one is just different. And it took a long time for me to, to come to, to believe that, that, that, that my own new life, life now isn’t ruined. It’s, it’s, it’s just different than it was before. Um, that I still lead, I lead a good life. It is very different. Do I have, I live with limitations every day? Do I like the limitations? Heck no. Do I wish I didn’t have them? I definitely wish I didn’t have them d but I can still work with what I can do. And I think that’s a big focus, like of our, of our support group, of, of what I’ve learned from, you know, various therapists like yourself, um, is, you know, focusing what I can do.
Speaker 1 00:26:24 Because the more that I focus on what I couldn’t do, the worse I felt about myself. Yeah. It was when I focus on, well, what can I do? Where’s my power? Because when I focus on what I can’t do, I’ve lost all my power. Mm-hmm. <affirmative>. But when I say, Well, what can I do? I don’t, doesn’t matter how small it is, you know, paint by number for 15 minutes. That’s what I could do. I mean, cause I draw a straight line from that thing to the fact that I’m talking to you today. Um, because it, it’s that focusing on, on on the things that we can do. And in the support group, we are very much a what can we do? What strategies? Yes. We’re a room full of people who’ve had crappy things or now a zoom full of people, <laugh> that have had, you know, crappy things happen to us and we honor that. We talk about that. But then the next step is, well, okay, yes, brain injury sucks. No question about it. That’s a given. Now what do we get lost in the fact that it sucks? Or do we say, Okay, what do we do? How do we move forward with what is, um,
Speaker 0 00:27:32 Yeah. Thanks. So I’m wondering if we can transition a little bit to talking about like three tips or insights or tools that someone might be listening to could take with them today from your own journey and experience.
Speaker 1 00:27:47 Mm-hmm. <affirmative>. I think one is to find something that’s for a survivor. To find something that you’re good at, to find something that you can do. Just like, like what we were talking about, um, that I really date my acceptance journey, my journey through the grief to that paint by number. So finding something that you can do, something that you enjoy doing. Something that doesn’t trigger the grief. I, I know so many people who have found their way back through artistic activities. Yes. Crafts music. Right. Whatever it is that’s that, that somebody finds, um, joy in mm-hmm. <affirmative>, you know. Um, so I think that would be one tip. Um, another one would be another one we’ve al we already kind of talked about is finding a community, finding having other survivors to talk to because there is such magic when we talk to one another and such games that can be made from having a community of other survivors to talk to.
Speaker 1 00:28:50 And the third one would be having strategies for when the grief comes up. Because no matter how far out you are, that grief, it’s always gonna be there. Um, I mean, I am 22 years out and I still, there are times when I still feel the grief. I mean, it’s just like, it’s just kinda like the grief after somebody dies. Yes. At first it’s the gaping hole. It takes very little to like fall into that gaping hole. Over time. The hole gets smaller, but it’s still there. It’s the same thing with brain injury. Over time that gaping hole can get smaller, but yet it’s gonna, it’s still gonna be there. So having strategies, for example, um, one time that grief can get triggered is around anniversary day that mine is coming up in just a few weeks. And for years, basically every June would really be awful because I would be thinking, what was I doing in June a year ago, two years ago, five years ago?
Speaker 1 00:29:49 I’d think about what life had been like in the, in the, you know, days and weeks just before my accident, um, before life changed, you know, forever. And it would just bring back all of that grief that I thought I’d processed, but it would be so raw again, around the anniversary time. Mm-hmm. <affirmative>. And then I came up with a, eventually came up with a strategy of, you know what, I got a new life on July 6th, 1999. It’s, it’s kind of like a, it’s like a birthday. I got, I got born again, um, <laugh>. So let’s, let’s honor that as a rebirth day. And because I got a new life, I am going to honor it by doing something new, something I’ve never done before. So July 6th has become a day when I do something I’ve never done before, can be very simple. First year I did this.
Speaker 1 00:30:40 I mean, I went to a restaurant I’d never been to before with friends. I ordered a dish I’d never eaten before. Just really simple. Um, it’s a day when I think about how far I’ve come, not where I was before the accident, but how far I’ve come because that’s the only measuring stick that matters. That who I was before doesn’t really matter anymore, but how far I’ve come since July 6th, 1999. That matters. And so, so that day, that’s, that’s a, a strategy for, for coping. When, when grief, when that grief arises on that, that day. Um, and, and not, not, and realizing that when those triggers come up is okay. That it’s, it’s pretty, I think it’s pretty normal to have those, those triggers, but then to, to work on strategies for them.
Speaker 0 00:31:32 Mm-hmm. <affirmative>, Oh, it’s, all of that is just so valuable. Thank you for sharing. Thank you for sharing all of that. I think all the listeners who are going to hear this are, are gonna take a lot
Speaker 1 00:31:43 Outta that. Wonderful.
Speaker 0 00:31:46 So we’re going to quick fire <laugh>. I wanna talk to you forever, <laugh>, but our time is, is winding down. So maybe if you could share quickly, what is one habit or routine that helps you in your recovery, either now or any point in your journey?
Speaker 1 00:32:06 One habit that helps me is because my big biggest symptom was still is, is the mental fatigue. I get tired every single day and on my, so on my calendar, I, I put in my rest times are in my schedule because, so that I can’t, because it is, it is non-negotiable that I have to rest every day. So by putting it into my calendar, it, I can’t schedule anything like around, I can’t schedule anything in that time. I know that this is something that is important to do. It means that I don’t try and fill up the day with, with other things. Um, that, because getting that rest, that brain rest that I need. Cuz if I don’t get that, everything falls apart. <laugh>. Mm-hmm. <affirmative>,
Speaker 0 00:32:54 Then the cottage,
Speaker 1 00:32:56 Oh, it falls. But yeah, quickly, dramatically, um, in, in an ugly kind of way,
Speaker 0 00:33:02 <laugh>, I was making a non cottage cheese again. That’s what, like the cottage cheese is the yardstick, you know that. Yes, yes.
Speaker 1 00:33:09 Yeah. Basically when I, when I lose control of my cooking, um, it means that I am out in the world too much. That I’m trying to do too many things more than my brain can really do. Um, and that’s, it’s, it’s kind of, it’s kind of a funny way, um, of, of, of judging. Um,
Speaker 0 00:33:30 Yeah. But I think that’s, I think that’s good. And you know, I, I always encourage any client that I work with brain injury or not to think about like, what are those self care non-negotiables that you have? And especially for my clients with brain injury, those really become super non-negotiable. And I think your, your whatever occupational therapist you worked with in the past would be so proud of you. Mm-hmm. <affirmative> blocking your schedule for rest times because the pacing and all that stuff. Um, my OT friends just, you know, that’s their, that’s what they love to talk about.
Speaker 1 00:34:01 Yes. Uh,
Speaker 0 00:34:02 So moving on, what is, this is a fun question. Mm-hmm. <affirmative>, what is your favorite holiday food and who does it remind you of?
Speaker 1 00:34:10 Well, one of my favorites is, it’s gonna sound weird, is cheese ball <laugh> <laugh>. So I talked about how my mother has passed away, but she would make this cheese ball. It is basically, it’s, it’s this like whole compilation of cheeses. You put all and you mix it all together and you wrap, you know, kind of, um, form it into a ball, you know, cover it in nuts. And, um, you know, she would make it every holiday. And I, I make it, I, my father loves it, so he always requests that I, that I make the cheese ball. Um, and, and it has, it has fun memories because it calls for a little bit of blue cheese. My father likes a lot of blue cheese, so have to add, add extra blue cheese. Um, I like those, those things that remind those recipes that remind me of family. Mm-hmm. <affirmative>. Um, also they’re are simple because I’m not that good at Cook <laugh>.
Speaker 0 00:35:02 Yeah. It reminds me of a simple cheese recipe from my, like, I hadn’t really thought about this, but I haven’t had in a while. But my family, we have cream tea and pepper jelly on holidays. And so it’s just, you put the cream cheese down and you just pour the pepper jelly on top and it’s so good. Mm-hmm. <affirmative> super simple. Maybe I’m gonna link that in the show notes. <laugh>
Speaker 1 00:35:21 <laugh>. Cause
Speaker 0 00:35:23 I’ve made that before. If you, maybe you can give us your cheese ball recipe. I’ll probably put that on there.
Speaker 1 00:35:29 Yes. It came from a cookbook, old old style cookbook that, that my mother used to use, that I, that I, you know, that I now have. And it just, it has nice connotations. It’s a, it’s a recipe that my grandmother used to make too. Um, so I, I, I like history. Um, you know, I am the family genealogist, so it, I like all those things that, that connect to the past.
Speaker 0 00:35:52 Yeah. And that’s why I think I love this question because I think food is, it is part of our connecting, right? Yes. It’s part of how we connect and mm-hmm. <affirmative>, um, to our families and to others.
Speaker 1 00:36:02 Mm-hmm. <affirmative>.
Speaker 0 00:36:03 So my last question is, what is one thing you would tell your younger self if you could at any point in your life?
Speaker 1 00:36:13 I think one thing I would tell my younger brain injury self, that that self, I was, you know, in the early years post brain injury is believe that it’s going to get better. Believe that where you are now is not where you’re going to be, you know, one year, two year, five years, 10 years from now. Cuz when it’s, when it’s so awful in those early years, it can seem like it’s always going to be exactly like this. But I mean, I, I, I, I look, I mean, I’m nearly 22 years out. I mean, I look at where I have come from. You know, 15 minutes is all I could do on a paint by number to where I am now, You know, as a, as a speaker, as an author that I could not have imagined that in the early years. So believing in there is a path, there is a path forward, even if you can’t see it, but believe in the path. It doesn’t matter if you don’t know what it is.
Speaker 1 00:37:20 Um, but believe that there will be a path that if you take one small step at a time, that you will find your way. And I, and I was so deep in the grief early on that it was hard to see that. And I think that’s a, I I hope, I think that the lesson that I have learned well enough now that I believe it, even when other things go wrong in life now that like, you know what I have, I still live with a disability, but I have come through the grief. The hardest thing I’ve ever done was coming through that grief, which gives me a lot of confidence in my ability to come through other things. Um, and I didn’t know that about myself before. So I like to think that that will translate into other, other hard times, you know, in life.
Speaker 0 00:38:11 Wonderful. I think that people are gonna want to reach out to you, Carol, because you offer so much hope and inspiration. Uh, so where can people connect with you?
Speaker 1 00:38:23 Um, through my web, my website, which is, um, star speaker author.com.
Speaker 0 00:38:29 Awesome. Yeah. And pick up your, I I really enjoyed your book. Thank you. I have more to listen to about, from what I have listened to. It is absolutely wonderful.
Speaker 1 00:38:38 Yes. Cause I, I, you know, I wanted to, I wanted to write about acceptance because I had such a hard time accepting my own brain injury that I wanted to, to help other survivors who are on that path, who are trying to, to come to terms with this. I wanted to use what I’d been through to make a difference for others.
Speaker 0 00:38:57 Awesome. And is your, is your support group open to people outside of Maine or is that just main folks?
Speaker 1 00:39:04 Um, we are, we’ve been on Zoom. What I’ve tried to do is to keep us still concentrated in the greater Portland area because we, we eventually will go back to in person and I don’t want people to then be left hanging like, well, okay, yeah, I joined from, you know, Vermont or California or wherever, but now they’re back in person and now I have no more group. Um, but there is a, there is a statewide, um, brain injury support group, um, that is, that’s, um, that’s virtual that anybody in the whole state of Maine, you know, can, can join, um, by reaching out to the Brain Injury Association of Maine. Oh, good to know. Um, to get on, to get on that list. I, I’m actually one of the co-facilitators of that one as well. Mm-hmm. <affirmative>. Um, so, and there are on, on the, on the Brain Injury Association Maine website. There’s a list of all the support groups in the state. There are, I think, oh, 15, 70 15 or 18 some, something like that, um, of them now. So they’re, um, you know, most are are on Zoom these days. Yes. Or some, some other platform. Um, but gradually, you know, we hope to, to be able to meet in person again. It’s a, you know, it’s a process given, given the pandemic. Oh,
Speaker 0 00:40:10 For sure.
Speaker 1 00:40:11 Yes. Um, but I’m very grateful that we’ve been able to, um, to, to still do Zoom and to, to be able to offer support to one another, um, through this time.
Speaker 0 00:40:25 Yes. So important. Well, I thank you for joining me on the podcast today. Thank you. And I know that I’ll see you in the future.
Speaker 1 00:40:33 Yes, <laugh>,
Speaker 0 00:40:33 Thanks again.
Speaker 1 00:40:34 You’re very welcome.
Speaker 3 00:40:41 Thank you for joining us today on the TBI Therapist podcast. Please visit tbi therapist.com for more information on brain injury, concussion, and mental health. The information shared on today’s podcast is intended to provide information, awareness, and discussion on the topic. It is not clinical or medical advice. If you need mental health or medical advice, please seek a professional.