Ep 28 l Caregivers for TBI Survivors: Managing Medical Needs, Behavioral/Cognitive Changes, Stress, Burnout, & Frustration

A deeply honest caregiver-focused episode, My Mom and I unpack the reality oflife after a traumatic brain injury—for both the patient and the people who love them. Together, we reflect on the long road from returning home to outpatient rehab and more surgeries, my move back to LA to try to be an adult and live solo, and the many more medical, mental, and subsequent emotional issues.

Recovery isn’t linear: it’s one step forward, two steps back, filled with setbacks, fear, and constant adaptation. My mom shares what it was like to advocate for her daughter in medical settings, navigate PTSD-level anxiety, and learn the difference between supporting and enabling, while I open up about the emotional whiplash, identity loss, and loneliness that came with rebuilding my life. 

Answering questions from my Mom’s former LoveYourBrain caregiver support group - that she still independently meets with three years later - we break down the complexity of caregiver-patient communication—why emotional regulation is harder after brain trauma, why “fixing” isn’t always helpful, and how boundaries can exist alongside unconditional love. While a traumatic brain injury has at moments made both my Mom and I more upset and angry than we ever could have expected, it has brought us closer than most mom & daughter duo’s.

Ultimately, this episode is a love letter to caregivers: a reminder to seek community, take care of yourself, and give grace to the person healing in front of you, even when progress looks messy. It’s raw, funny, heartbreaking, and validating—proof that two things can be true at once: you can be lucky to be alive, and still be grieving everything that changed.

Win most, lose some

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Transcript

And most people don’t give you grace. I’ve seen you lose friends. I’ve seen people look at you different. And then there are times when I’m like, “Why is she reacting like that?” And then I’m like, “Oh my gosh.”

And dad is the one who’s like, “Come on, get back. You got it. Some of it—you can’t let it get to you like this.” Not that I even get mad at you, but I get so, like, frustrated. And he’s like, “It is what it is. She’s got a brain injury.”

Almost dying taught me how to live. Being struck by a car left me in a three-and-a-half-week coma with 15 broken bones and 16 surgeries to complete, including brain surgery. However, I woke up from that coma in an even greater place than I ever foresaw for myself. How? The universe will guide you out of the darkness and into the light if you allow it.

Often, spirituality comes off as too highbrow. I’m not about that. Welcome to the podcast that talks and teaches about it through the lens of humor. Together, we’ll harness positive energy and use it to work with the universe—all while giggling the entire time. Welcome to Gabriella Rebranded: When Most Lose Some.

Hey guys, welcome back to Gabriella Rebranded.

My mom is here again today. This episode is our caregiver-focused episode. So here we’ll be talking to caregivers of people with mental disabilities, largely pertaining to the brain. Of course, I’m sure there are things that you will say that pertain to all parents who raise a child with a disability, but you—every month—meet with caregivers of children with brain injuries. And that is what you know. That is what you’re an expert on.

Expert? That’s a strong word.

Okay, not an expert, but that’s your lived experience.

To get this out of the way—housekeeping: subscribe, review, sign up to my newsletter, GabriellaRebranded.com. Follow me on TikTok at @GabriellaRebranded. Do all the things. Okay. Thank you guys so much.

Now, let’s get into the episode.

And I don’t even know if it’s beneficial to say this, but just fair warning: the weather is really bad today, and air pressure changes really mess with my head. So if I seem a little out of it, that is why.

And with that, let’s get into the interview.

So I know you had some things you wanted to start with.

I wanted to start with—interview… let’s get into the episode. Okay, yes. I just wanted to start with, because I think I was so nervous the other day, and I was, like, trying to think, “Oh, don’t mess this up.” And I was also trying not to cry. So I don’t think—I don’t know if I really drove home the fact of how horrific your injuries were.

And for me, for your father, your brother, your aunts, uncles—everybody—to see you in that condition is the hardest thing we’ve ever had to live through.

And the fear—no shit—but the fear… the fear was so real. I didn’t know if you were going to live. I didn’t know what capacity you would come back to us in.

As that first day, I think I said it: I didn’t know where I could touch you. I didn’t know where I wanted to hold you, and I knew I couldn’t.

You had six broken ribs. You had a broken neck. You had a broken pelvis. You had a broken leg. You had brain injury. You had a broken cheek, a broken jaw, broken orbital floor. Like I said, it ended up being your arms were okay—so I could stroke your arms—but… horrific. And the fear is real.

And I’m so grateful you’re here, but I still have that fear, and I think I always will. And when I think about this, my chest gets—feels like somebody’s squeezing it so hard when I really think about it.

So if people know people who are going through this, give them grace. Give them grace. They are dealing with a lot. With a lot of fear. With the unknown. The unknown.

And just give them grace and be there for them in any way you can, because it helped us. And we thanked people, and there are so many others I could have thanked. I don’t know if we mentioned the nurses—I don’t remember—and all our friends… college friends, childhood friends, you know, who were there for us.

But yeah—be there for those people. Be there.

I think that’s a great way to start as well, because it’s important that everyone knows that caregivers are going through that.

So to caregivers who are listening, I hope that was incredibly validating. And to anyone who knows the caregiver of someone who’s been so severely injured, or is ill—it affects us all. It affects us all. It’s in a different way than you.

I will never take away what happened to you.

Yeah.

But just seeing you so hurt—I know it’s your own much pain, it’s your own kind of trauma—that’s not lost. It was… it was, you know, the pain to see you in pain every day was hard. And see you fight to come back from that was hard. It was really hard. Hard, hard, hard, hard, hard.

But I’m back.

But now we talk about how long it took for me to get back. And I guess it took— I mean, we’re still—we’re still trying to get me back. But okay.

Let’s start before we segue into the questions. Let’s start with… I leave the hospital.

Okay—well, leaving rehab. Leave rehab.

I leave rehab. So we’ve gone through rehab, which was hard, and you learn how to walk and all that… you know, learn how to talk again.

Oh my god, I talked with the weird— and I couldn’t have pronounced things… remember I—

I’m imitating myself, so this is offensive. Remember I talked like—

No, but I couldn’t pronounce words.

You couldn’t pronounce words. And I—again, imitating myself—yeah.

You had no— but hearing your voice for the first time was one of the best things. Hearing your voice. Because it was a long time coming.

That wasn’t my voice, but okay.

Was it your voice?

It was still you.

So anyhow, let’s go from the day we left. So—put you in the car. It was so weird to all of a sudden be doing this on my own.

Yeah.

I remember the drive home is the first time that I knew you were struggling. That was the first time I knew—or started to know—oh, this is really damn bad. Because in the car, on the way home, you didn’t feel well.

Did not feel well.

And it was a short drive. I mean, California Rehab to my apartment at the time—10 minutes.

Ten minutes.

And it was terrible. It was terrible. And she was—you were not doing well on that ride home.

Getting you upstairs to your apartment—thankfully we had an elevator—but that was such a slow process because that was a very long walk for you. Even though it really wasn’t a long walk… it was a long walk.

And we had held on. You had rented this—

If it was more than 10 feet, it was like a struggle for you.

I could only walk probably… walking close to 150, maybe 300 by the time—

Oh, you really… 150.

But it was a struggle, and it was slow, but it was a struggle.

150… but it was 300, but it was a struggle.

I got to stop. I could only confidently do, like, 10 feet across.

No. And you were with the belt.

Yeah, yeah. And somebody had to hold you—hold the belt.

Had to hold the belt. Like, I had to learn how to hold the belt, even.

Um, but anyhow. So we get there, and you had been to the apartment, I think, the day before the accident.

And I remember calling the landlady—going back—and this was days after the accident. And she’s like, “Well, do you still want the apartment?” And I’m like, “I’m not giving up on my daughter.” You know?

And I figured: if I let that apartment go, and you woke up and were like, “Where’s my apartment?” I’m like, “Oh, I let it go…” You’d be like, “What?” You know? And I didn’t want you to think I gave up on you. Like, it was important for me.

Fast forward—flash forward—whatever. I get you there. You had no recollection. No recollection of the apartment. You didn’t know you had rented this apartment. You didn’t remember it.

You’re sitting in it, and you’re like—

Yeah, I— but I used that apartment while you were in the hospital. For me, it was a great place to stay. So I did use it. But you had no recollection of it.

And that first day, you just sat in the bed. You were exhausted. That ride home exhausted you.

So a couple days later, though, I think you saw a couple friends came to visit… and then getting you on a plane—oh, that was—

That—you were in a wheelchair. You had to be in a wheelchair.

Yeah. Could not have walked in an airport.

And of course it was raining in L.A. that day. And getting you home… but I was so happy. So happy to get you home.

And I was so hopeful. We were going forward. We were making strides. This was good. We were out of the hospital.

You had had a neuropsych test—which you did terrible on. You did terrible. When you were still in rehab.

But it was—again—it was your vision. It was the processing. It was all of that stuff.

And I will never forget Dr. Bryce saying, “In six months’ time, this will be a distant memory for you.”

No.

And I didn’t know what to expect, and I—that went right to my heart, in my head. I think Dr. Bryce said that to—leave—to save you. He obviously… he’s a very smart man that sees this all the time. He said that to kind of give us hope. Give us some hope, because you needed it.

And every brain injury, as you know, it was different.

No. My dad knew. My dad knew what it really was. My dad let you live in your deluded reality.

Yes, he did.

And let me live in my deluded reality.

And my dad was like, “This ain’t gonna be done.”

Yep.

So we get back to New York. You started—we were very lucky. We knew somebody who was at the rehab center, so you were able to get in and start—

Transitions—outpatient rehab.

Outpatient rehab right away. Mrs. Pappas.

And so you were able to start like the day after—maybe two days after—you were able to start PT, OT, speech, everything. And you did that, you know, several times a week. I think three times a week for each thing, so nine times a week, and then also neuropsych.

I think—yeah, neuropsych there too. So that was once a week.

Yeah. And it wasn’t as often.

So we lived there. Because you had a brain injury, I couldn’t leave. I was not supposed to leave. They don’t let people who have brain injuries—their caregiver really can’t leave.

I couldn’t sit in on them, but—

No, you had to sit in the hallway.

I sat in the hallway? In the hallway.

But I was so hopeful. The holidays were coming up, and you loved Christmas, and the family was all together.

And Christmas was great, except again—the car ride. We went to Jersey. Horrific. Oh my god. The car ride.

We went to New Jersey, to my aunt, uncle, and cousin’s house, and the car ride was terrible because my dad made me sit in the back seat—because, you know, very nervous. We were… you know, very nervous.

Very nervous.

My dad was like, “I don’t want her getting—God forbid there was an accident.” So they had me sit in the back seat.

But sitting in the back… I couldn’t sit in the back seat of a car for a very long time. It was terrible for my head.

And I remember the ride to New Jersey—I literally… when we turned onto their street, like their house was down at the end of the street, and I was like, “I need to get out right now,” because my head hurt that much.

And I think even maybe went in and took a nap.

Yeah. Like you were exhausted.

And I was like, no, everyone was so excited. All my family was obviously so excited to see me. And I was like, “No one fucking talk to me. My head.”

No, no, no, no. You didn’t feel well. But at that time, you were still docile. I can’t forget—you were still kind. Gabriella, you would never have said that. You just said, “I just need to take a nap.”

You had no voice, and you were like, “I gotta go to sleep,” you know? And you needed… I think you went and laid down for a while before you even came out.

And then everybody was just so happy to see you.

Yeah. And you looked beautiful. You had the neck brace on, which you hated.

Oh my god, I remember I hated the neck brace. But I remember what was so sad is like—I’m obviously into my makeup, and my eyes are like my feature, and I was so excited to get out of the hospital and do my makeup. And my goal was to look as least brain injured as possible.

And this eye—the vision was so bad that I could not do eyeliner on this eye.

Yeah, I forgot which eye. But this eye was the one that was messed up, so this one was the one that I probably couldn’t do eyeliner on.

I could not do eyeliner on this eye.

I literally—the only way I learned how to do liner was I just had to train my hand, basically, how to do it because I looked in the mirror and couldn’t see it.

That would be for your hand.

Yeah, it was.

And I remember a makeup routine that normally took me 30–40 minutes now took me two hours.

Yeah. It took you a long time.

But um… my whole thing was: I wanted you home for Christmas. I wanted you home for Christmas. That was my goal. Home for Christmas. We lost Thanksgiving—I’ll be home for Christmas.

Oh yeah. (And I start singing.)

But that euphoria was short-lived. So short-lived.

I think once we came home… the reality of your new reality… really—like, it was hard, you know.

And you couldn’t come down the steps by yourself because of the neck brace. I wouldn’t leave the house because I was worried about leaving you.

You sat on the couch. You couldn’t do anything else. You sat on the couch.

And finally, then you were able to start exercising a little bit, and it was horrific.

My double vision was so, so, so terrible that I—well, first of all, wasn’t allowed to read, and I couldn’t have… and I was only allowed to watch TV for like an hour max.

And not only that, but it was just not fun, because my double vision was so bad. So I, for like several months, just went to outpatient rehab and sat on my couch and stared at a wall basically.

Sat with the dogs.

Sat with the dogs. I mean, I was always home. I really didn’t leave you.

Way to do a hand-knitted blanket.

Oh, I hand-knitted a blanket. Yes. Aunt Chris gave that idea—to try the hand-knitting the blanket.

And you did try baking, but following instructions— I remember my brother baked cookies with me around Christmas. Not only was it hard for me, it took like two hours to make very easy cookies, and I was exhausted by the end of it.

You just— but anyhow, we figured it would go. And so on the whole, we’re going through it. I’m still optimistic.

But by January, all of a sudden, I noticed a bump developing under your eye. And I was like… I don’t know. Let it go, let it go. Like, it’s not going away. It’s getting worse. It’s getting worse.

And it got to the point where it was getting big.

Now, your surgeon—he’s in California. We’re in New York. Trying to call different ocular plastics to see you. Nobody wanted to. Nobody. Oh, three months—like, three months. “There’s something wrong now. There’s something wrong now.”

Three months. Three months. You know? No. You know?

Finally got you into one. He really—he called your plastic surgeon in California. They determined that they thought it could be an infection, but he didn’t want to do anything with it.

I don’t know if you remember that. He did not want to go near your eye, touch your eye.

And we finally got someone to address it. And they tried draining it, thinking maybe it was just like an abscess right there. And it came right back.

And then they were like, “No, the plate is infected.”

So what do we do? Well, once metal gets infected, it has to come out.

And then that wasn’t bad enough. And then there was the fear of—we didn’t know if the bone was healed enough to support your eye.

But it was. It was.

Yeah. It was. But you went into that surgery, and we didn’t know.

No. It was like a “we’ll see.” “We’ll see if the bone…” I’m like, “And what if—?” And he’s like, “We’ll address that if we need to.”

I think this is important—the part to talk about the caregiver thing—where you didn’t want me to realize that things were fucking fucked. And they’re right at the part where it started to be my eye.

You didn’t want me to know how scared you were about my eye.

No, of course not. No. I wanted to keep as much from you, but of course we knew we had to treat it, and we did.

But yes, there is a fine balance about what’s too much. Tell them… because you were still healing. There was still so much healing to go on.

And then right around that same time, my hair started falling out. Started falling out.

So you couldn’t really shower on your own, and comb your hair on your own yet. So this is now January, also February. I would help you, you know.

And all of a sudden I was combing through, and you had the neck brace, and we would take it off for your showers. And at first I thought your hair was matted so bad at the neck brace was— and I’m like, “Oh.” I worked on all these mats. Didn’t realize how bad by the neck brace.

But then I started noticing: it was just so much hair. And your part started getting wider.

And of course, brought you to the doctor. And I’m trying not to let you know. And I would comb it and I’d throw it out—like—or the first time I kept it hidden and I showed dad. I’m like, “What is this? What is going on?”

And then we took you to the doctor and it was a form of… where your hair follicles shut down. It was like a form of alopecia, kind of, but it’s temporary, and it has a name. But your hair follicles shut down after trauma, and it usually happens three months after.

January—we were in January—and all of a sudden your hair…

That wasn’t my voice, but okay.

Was it your voice?

It was still you.

So anyhow, let’s go from the day we left. So—put you in the car. It was so weird to all of a sudden be doing this on my own.

Yeah.

I remember the drive home is the first time that I knew you were struggling. That was the first time I knew—or started to know—oh, this is really damn bad. Because in the car, on the way home, you didn’t feel well.

Did not feel well.

And it was a short drive. I mean, California Rehab to my apartment at the time—10 minutes.

Ten minutes.

And it was terrible. It was terrible. And she was—you were not doing well on that ride home.

Getting you upstairs to your apartment—thankfully we had an elevator—but that was such a slow process because that was a very long walk for you. Even though it really wasn’t a long walk… it was a long walk.

And we had held on. You had rented this—

If it was more than 10 feet, it was like a struggle for you.

I could only walk probably… walking close to 150, maybe 300 by the time—

Oh, you really… 150.

But it was a struggle, and it was slow, but it was a struggle.

150… but it was 300, but it was a struggle.

I got to stop. I could only confidently do, like, 10 feet across.

No. And you were with the belt.

Yeah, yeah. And somebody had to hold you—hold the belt.

Had to hold the belt. Like, I had to learn how to hold the belt, even.

Um, but anyhow. So we get there, and you had been to the apartment, I think, the day before the accident.

And I remember calling the landlady—going back—and this was days after the accident. And she’s like, “Well, do you still want the apartment?” And I’m like, “I’m not giving up on my daughter.” You know?

And I figured: if I let that apartment go, and you woke up and were like, “Where’s my apartment?” I’m like, “Oh, I let it go…” You’d be like, “What?” You know? And I didn’t want you to think I gave up on you. Like, it was important for me.

Fast forward—flash forward—whatever. I get you there. You had no recollection. No recollection of the apartment. You didn’t know you had rented this apartment. You didn’t remember it.

You’re sitting in it, and you’re like—

Yeah, I— but I used that apartment while you were in the hospital. For me, it was a great place to stay. So I did use it. But you had no recollection of it.

And that first day, you just sat in the bed. You were exhausted. That ride home exhausted you.

So a couple days later, though, I think you saw a couple friends came to visit… and then getting you on a plane—oh, that was—

That—you were in a wheelchair. You had to be in a wheelchair.

Yeah. Could not have walked in an airport.

And of course it was raining in L.A. that day. And getting you home… but I was so happy. So happy to get you home.

And I was so hopeful. We were going forward. We were making strides. This was good. We were out of the hospital.

You had had a neuropsych test—which you did terrible on. You did terrible. When you were still in rehab.

But it was—again—it was your vision. It was the processing. It was all of that stuff.

And I will never forget Dr. Bryce saying, “In six months’ time, this will be a distant memory for you.”

No.

And I didn’t know what to expect, and I—that went right to my heart, in my head. I think Dr. Bryce said that to—leave—to save you. He obviously… he’s a very smart man that sees this all the time. He said that to kind of give us hope. Give us some hope, because you needed it.

And every brain injury, as you know, it was different.

No. My dad knew. My dad knew what it really was. My dad let you live in your deluded reality.

Yes, he did.

And let me live in my deluded reality.

And my dad was like, “This ain’t gonna be done.”

Yep.

So we get back to New York. You started—we were very lucky. We knew somebody who was at the rehab center, so you were able to get in and start—

Transitions—outpatient rehab.

Outpatient rehab right away. Mrs. Pappas.

And so you were able to start like the day after—maybe two days after—you were able to start PT, OT, speech, everything. And you did that, you know, several times a week. I think three times a week for each thing, so nine times a week, and then also neuropsych.

I think—yeah, neuropsych there too. So that was once a week.

Yeah. And it wasn’t as often.

So we lived there. Because you had a brain injury, I couldn’t leave. I was not supposed to leave. They don’t let people who have brain injuries—their caregiver really can’t leave.

I couldn’t sit in on them, but—

No, you had to sit in the hallway.

I sat in the hallway? In the hallway.

But I was so hopeful. The holidays were coming up, and you loved Christmas, and the family was all together.

And Christmas was great, except again—the car ride. We went to Jersey. Horrific. Oh my god. The car ride.

We went to New Jersey, to my aunt, uncle, and cousin’s house, and the car ride was terrible because my dad made me sit in the back seat—because, you know, very nervous. We were… you know, very nervous.

Very nervous.

My dad was like, “I don’t want her getting—God forbid there was an accident.” So they had me sit in the back seat.

But sitting in the back… I couldn’t sit in the back seat of a car for a very long time. It was terrible for my head.

And I remember the ride to New Jersey—I literally… when we turned onto their street, like their house was down at the end of the street, and I was like, “I need to get out right now,” because my head hurt that much.

And I think even maybe went in and took a nap.

Yeah. Like you were exhausted.

And I was like, no, everyone was so excited. All my family was obviously so excited to see me. And I was like, “No one fucking talk to me. My head.”

No, no, no, no. You didn’t feel well. But at that time, you were still docile. I can’t forget—you were still kind. Gabriella, you would never have said that. You just said, “I just need to take a nap.”

You had no voice, and you were like, “I gotta go to sleep,” you know? And you needed… I think you went and laid down for a while before you even came out.

And then everybody was just so happy to see you.

Yeah. And you looked beautiful. You had the neck brace on, which you hated.

Oh my god, I remember I hated the neck brace. But I remember what was so sad is like—I’m obviously into my makeup, and my eyes are like my feature, and I was so excited to get out of the hospital and do my makeup. And my goal was to look as least brain injured as possible.

And this eye—the vision was so bad that I could not do eyeliner on this eye.

Yeah, I forgot which eye. But this eye was the one that was messed up, so this one was the one that I probably couldn’t do eyeliner on.

I could not do eyeliner on this eye.

I literally—the only way I learned how to do liner was I just had to train my hand, basically, how to do it because I looked in the mirror and couldn’t see it.

That would be for your hand.

Yeah, it was.

And I remember a makeup routine that normally took me 30–40 minutes now took me two hours.

Yeah. It took you a long time.

But um… my whole thing was: I wanted you home for Christmas. I wanted you home for Christmas. That was my goal. Home for Christmas. We lost Thanksgiving—I’ll be home for Christmas.

Oh yeah. (And I start singing.)

But that euphoria was short-lived. So short-lived.

I think once we came home… the reality of your new reality… really—like, it was hard, you know.

And you couldn’t come down the steps by yourself because of the neck brace. I wouldn’t leave the house because I was worried about leaving you.

You sat on the couch. You couldn’t do anything else. You sat on the couch.

And finally, then you were able to start exercising a little bit, and it was horrific.

My double vision was so, so, so terrible that I—well, first of all, wasn’t allowed to read, and I couldn’t have… and I was only allowed to watch TV for like an hour max.

And not only that, but it was just not fun, because my double vision was so bad. So I, for like several months, just went to outpatient rehab and sat on my couch and stared at a wall basically.

Sat with the dogs.

Sat with the dogs. I mean, I was always home. I really didn’t leave you.

Way to do a hand-knitted blanket.

Oh, I hand-knitted a blanket. Yes. Aunt Chris gave that idea—to try the hand-knitting the blanket.

And you did try baking, but following instructions— I remember my brother baked cookies with me around Christmas. Not only was it hard for me, it took like two hours to make very easy cookies, and I was exhausted by the end of it.

You just— but anyhow, we figured it would go. And so on the whole, we’re going through it. I’m still optimistic.

But by January, all of a sudden, I noticed a bump developing under your eye. And I was like… I don’t know. Let it go, let it go. Like, it’s not going away. It’s getting worse. It’s getting worse.

And it got to the point where it was getting big.

Now, your surgeon—he’s in California. We’re in New York. Trying to call different ocular plastics to see you. Nobody wanted to. Nobody. Oh, three months—like, three months. “There’s something wrong now. There’s something wrong now.”

Three months. Three months. You know? No. You know?

Finally got you into one. He really—he called your plastic surgeon in California. They determined that they thought it could be an infection, but he didn’t want to do anything with it.

I don’t know if you remember that. He did not want to go near your eye, touch your eye.

And we finally got someone to address it. And they tried draining it, thinking maybe it was just like an abscess right there. And it came right back.

And then they were like, “No, the plate is infected.”

So what do we do? Well, once metal gets infected, it has to come out.

And then that wasn’t bad enough. And then there was the fear of—we didn’t know if the bone was healed enough to support your eye.

But it was. It was.

Yeah. It was. But you went into that surgery, and we didn’t know.

No. It was like a “we’ll see.” “We’ll see if the bone…” I’m like, “And what if—?” And he’s like, “We’ll address that if we need to.”

I think this is important—the part to talk about the caregiver thing—where you didn’t want me to realize that things were fucking fucked. And they’re right at the part where it started to be my eye.

You didn’t want me to know how scared you were about my eye.

No, of course not. No. I wanted to keep as much from you, but of course we knew we had to treat it, and we did.

But yes, there is a fine balance about what’s too much. Tell them… because you were still healing. There was still so much healing to go on.

And then right around that same time, my hair started falling out. Started falling out.

So you couldn’t really shower on your own, and comb your hair on your own yet. So this is now January, also February. I would help you, you know.

And all of a sudden I was combing through, and you had the neck brace, and we would take it off for your showers. And at first I thought your hair was matted so bad at the neck brace was— and I’m like, “Oh.” I worked on all these mats. Didn’t realize how bad by the neck brace.

But then I started noticing: it was just so much hair. And your part started getting wider.

And of course, brought you to the doctor. And I’m trying not to let you know. And I would comb it and I’d throw it out—like—or the first time I kept it hidden and I showed dad. I’m like, “What is this? What is going on?”

And then we took you to the doctor and it was a form of… where your hair follicles shut down. It was like a form of alopecia, kind of, but it’s temporary, and it has a name. But your hair follicles shut down after trauma, and it usually happens three months after.

January—we were in January—and all of a sudden your hair…

It was getting worse and worse, and I kept waiting for it to stop. And I wasn’t telling you.

And then one day you tried combing your hair yourself, and you came down, and I was like—what was this? And you’re like, “What’s with all this hair?”

And then we had… and you even went to the doctor with me and still didn’t quite understand that. That shows—that was before you really realized it. I don’t think you really understood why we were at the doctors when we went.

And it was… and so all of a sudden we’re so happy: hey, hey—you’re home, things—you’re going to progress… and you start realizing: you get an infection in your eye, and the plate—it’s gotta come out. Your hair is falling out. Now all of a sudden we have another surgery ahead of us.

We’re trying to figure out what to do for your hair loss. We started with looking at toppers. We couldn’t do extensions because your hair was falling out—you can’t put in extensions if your hair is falling out.

And it got so bad that you went to a wig.

Yeah.

And it was… yeah. That was another thing to deal with—was the wig. And that was horrible. And that would upset you.

So you made one step forward, three steps back. And that’s the way a lot of it was.

Yeah.

And a lot of loneliness, too.

So lonely. So lonely.

I think for me and for you. You had great friends in New York—they were working, they were in Manhattan. We were in Manhasset.

You could go into the city at the beginning. When you went into the city, I would drive you in, sit there, wait, and take you home. You couldn’t go in on the train like you used to go. That was not going to be happening anytime soon.

Or we would go in and you’d stay over, but it was all so hard for you. And it would be exhausting. So if you did that once every two weeks, that was it.

And yes, some friends did come out. They came out once, they came out twice. But it was lonely. It was really lonely.

And I started seeing you slide into sadness and depression. And I’m sad, and I’m getting depressed. And you were in therapy too, but it’s just… the whole caregiving thing. It was dealing with the physical aspects of it, you’re dealing with the emotional aspects of it, and you got your own stuff going on.

And you’re trying to keep your life moving forward in some form. But for a while, my whole focus was you.

I didn’t work. I really didn’t go out.

I think my college friends took me once—when we said yesterday about, “Just say we’re doing this”—and two of my college friends came out. We just spent a night in a hotel in Roslyn, went out to dinner, and they just knew I needed to step away from the situation.

And it was a weekend I knew dad was home with you, and it was something I could do.

Yeah.

And it was much needed.

But it’s exhausting for you. It was exhausting for me. And learning our new norm…

Yeah, our new norm was hard. And again—one step forward, two steps back.

So there were… and as a caregiver, you do need to take care of yourself.

I found this LoveYourBrain caregiver support group, which was wonderful for me. It met once a week for six weeks—eight weeks—I don’t recall what it was. And then thankfully, there’s a core group of us that stayed together and we still meet once a month.

And it helps because no one truly understands what you’re going through—what I’m going through—unless they’ve lived it. And there’s not a lot of people around us that have lived through it.

And so caregivers need—if you’re going through it—find that. Find a group. Find a group to talk to. And step away from it. Step away from it when you can.

I’m not saying all the time. I would never have left you. You know that. You were my world for months. We were each other’s world.

But it’s also hard as the caregiver—or as you—and you’ve said this too: the first time you see those friends… like you walk into tennis, you walk into a lunch with people, you walk into a club where you know people… oh my god, it’s all the questions. It’s all the questions. It’s all the questions. It’s all well-intentioned, but it’s like—

So the first couple times I did something in a group setting, I’d be like, “Take a deep breath,” because you don’t want to be crying.

But I know I cried every time I walked in. The first time I walked onto the paddle court, the first time I walked onto the tennis court… and I’ll never forget, you know, my teammates giving me hugs. Because I hadn’t seen a bunch of them.

And, you know, the first time I walked back into work… and people say, “How’s your daughter?” It’s— I know it’s like, “Oh, deep breath.” And it’s all good intentions.

When I see someone that I haven’t seen in a while, or someone that I know finds out that you were hurt, I say it becomes a fucking Barbara Walters interview. And sometimes I’m just not in the mood to do the Barbara Walters interview.

And I’m just like—like as we’re recording this, my 10-year high school reunion is in a couple weeks, and I know I’m going to see people that I haven’t seen since high school. And I’m like, “It’s going to be a mass Barbara Walters interview,” when I’m just trying to have fun at my high school reunion.

It’s true. And that’s a little different. But again—all good intentions.

And then you don’t know: how much do I say? How much do I not say?

Or people just being nice—like, do they really, you know… it’s a balancing act. But your life gets temporarily put on hold.

But you do have to get back to your life.

And the relationship changes between caregiver and child.

Oh, it’s—yeah.

Even a question I had: as you morph your identity from mom to caregiver, how do both mom and daughter manage their new roles?

You know, here you were—you were independent. You had gone to school in California. You studied abroad in London. If you told me you were going to go spend three, four, five months in London right now, I’d be like, no.

No.

But I’d let you do that when you were that age.

I am going to Italy next year.

Okay—one thing at a time, baby girl.

So it is a role shift.

It’s a role shift.

Well, I’ll say that from my perspective… obviously in a lot of ways—especially in the beginning—I went very backwards and became very, like, a toddler again. And I needed a lot of handholding that I never needed from you, because I was always a very independent person.

And now I needed so much handholding.

But I also know there were times where I sort of—I don’t want to say I had to be the strong one, but—I sort of knew that I had to persevere, and we didn’t have time to get bogged down in the sadness.

And she doesn’t want me to talk about this, but I’m going to talk about it because it’s such a core memory:

There was a time where—when the whole eye thing was happening—we were getting the second opinion, I believe. Second, third… second, third, fourth, whatever.

And the doctor was talking to me, and you just started—you were crying. And I was trying to talk to the doctor about what was going on: “How do we take steps forward?” Because the doctor was just giving me bad news, basically.

And I was like, “Okay, well, what can we do?”

You start crying.

And I remember I had to look at you and I had to say, “Mom, stop crying,” so I could keep talking to the doctor.

I cry a lot. I’m a crier. I cry.

She’s a Cancer.

That was a tough road. Your eye was a tough road. It still is. There’s still things we’ve got to do, you know?

All right—it’s not done yet. It’s not done yet. Your eye’s not done yet.

Um, but your vision’s gotten better.

Yeah. And I’m sorry for that, because I cry—well, I— I don’t like it.

She—when we were preparing for this—kept saying, “Oh, I’m sorry I did that. I shouldn’t have done that.” Blah blah.

Regret is just a waste of energy. I really like where I am, and I think you really like where I am. And I wouldn’t be here if we hadn’t done all the things we did—which we will continue to get into—mistakes included.

We made mistakes. Reel 3 28:34-30:08

You know, when you’re a caregiver, you’re thrown— all of a sudden you’re thrown into this. No one who’s a caregiver was prepping for it. No one who’s a caregiver knows what they’re doing. No—you’re thrown into it. 

So you’re figuring it out.

And like how I said you’re an expert and you were like, “No, I’m not”—you were a novice. I know.

So obviously things weren’t going to be perfect. Things still aren’t going to be perfect.

And we do say that all the time.

Yeah.

I will say to you: I am navigating this new norm right along with you, making the mistakes right along with you.

Because I have done things wrong with regards to where maybe I’ve pushed you hard.

And sometimes dad gets on me. He’s like—when I get upset and I get frustrated with some of the things—he’s like, “When are you going to understand? She has a brain injury. She has a brain injury.”

And I feel bad when I do that because I’m upset because I think most people don’t get that. And most people don’t give you grace.

I’ve seen you lose friends. I’ve seen people look at you different.

And then there are times when I’m like, “Why is she reacting like that?” And I’m like, “Oh my gosh.”

And dad is the one who’s like, “Come on. Get back. You got it. Some of it—you can’t let it get to you like this.”

Not that I even get mad at you, but I get so, like, frustrated. And he’s like, “It is what it is. She’s got a brain injury.”

And that’s hard. And that’s hard.

Yeah.

But I think what’s interesting about you saying that is my dad—who’s also a caregiver—he will often, when I’m frustrated about things you do… because the caregiver/patient relationship is very complicated…

When I get frustrated about things that you do and I’m venting to dad, he says, “You need to remember she’s doing this for the first time too. You’re both going through this for the first time.”

And anything I’ve done has only come from a place of love—and what I think is best. It may not be the right thing, but it’s all coming from a place of love.

And coming from me still believing you can be the best you are—and you are—and not being like, “No, a brain injury is going to slow her down or stop her. She’s better than that.”

And you’ve been fighting back.

But it all comes from a place of love. And maybe it comes from this hope that I still want you to achieve everything you’ve wanted to achieve.

Yeah.

But it is a new normal for me. And if it’s me accepting what you can and can’t do… and there are certain things you’re not going to be able to do.

Trips—we planned our trip this year that we went closer to you. We went to Cabo. Because I know if we would have been like, “Hey, let’s go to Germany,” you now had to make that trip. You’d be exhausted to New York, and then that would not…

It’s not ideal. That’s not an easy thing for you anymore. It’s just not.

Yeah, it’s not.

But we just naturally fell into a place that another question you got was about, which is about caregiver and patient communicating. How do you healthfully communicate? Which is tips for ideal communication from both. How do you both ask for what you need?

And we’re both bad at that.

We’re both bad at this.

I would like to think I’ve gotten better, and I think I have… but we’re both bad at it.

And what I would like to start out with saying from the patient perspective is: the caregiver/patient communication… communication styles amongst every relationship is something that needs to be established.

Boyfriends/girlfriends need to learn how the other communicates. “This is my love language.” We all know what the love languages are, you know what I mean?

Yeah.

So patient/caregiver, it’s the same thing—but it’s to the power of 13. It’s all just very heightened.

Because an issue that people with brain injuries largely have is processing. So we aren’t always good at articulating what exactly it is we need, or what exactly it is that’s bothering us.

Sometimes it’s hard to say things because you feel like you’re letting everyone down.

And I’m sure there are times—I’m assuming—because I remember one time I had a health scare when I was much younger, and I knew my mom was so upset about it. So even though I was scared, I didn’t want to add to her fear.

So I’m sure there are times when things you might want to keep from me because you already know—

Actually, you tell me a lot.

Yeah. You tell me a lot. I know a lot.

But I’m sure there are times, you know.

And there are times—the communication skills—where I have learned you need to process.

Yeah, I need to.

So a lot of times when we’re talking about something, I’ll be like, “Now you think about that and let me know in a day or two.” Or, “Let me know in a couple hours.”

“Are you okay with us doing that for the holiday? Are you okay with this?”

Think about it.

Because there have been times when we communicate and I’m not understanding the processing, and I’m like, “Oh, we’re going to do this and this,” and then it’s something that upset you.

And you wouldn’t want to tell me.

Well, you say okay, and then you thought about it, and then you’re like, “Yeah, I’m not okay with it.”

But you wouldn’t tell me because you didn’t want to disappoint me.

And then we would do something, and it would just blow up in our faces, because you were miserable doing it—for either the reason you didn’t feel well, or it was too much of us to expect from you.

And I’m like, “Why didn’t you just tell me?”

Yeah.

So another thing that I would say to summarize is that a caregiver should give the child with a brain injury or a mental disability time to process and understand what they’re being asked.

Because it does take us a little bit more. It does take us a little bit longer to understand what we’re being asked.

Like I still— all the times when I’m having conversations with friends or arguments with someone—even if they’re very healthy arguments… I—after the fact—I’m like, “I should have said…”

But for us, it’s… it’s—

Or I, a lot of times, I’m like, “I haven’t decided how I feel about something, so I need to take a minute and decide how I feel about something, and sleep on it,” and be like, “Okay, now I know how I feel.”

And then I’m able to come back and be like, “Okay, I thought about it, I understand, I’m here.”

And my good friends, they know that that’s a thing with me and they’re very respectful of that. They don’t push me to have conversations before I’m ready. And they understand that I may come back to them with something 18 hours later.

Right. Yeah.

And even with us, it’s— all of a sudden you’re like, “Mom, you know, let’s talk about…” and I’m like, “Okay.”

But I hope—I like to think we do get back to it.

I make mistakes sometimes, but we’ve had a lot of communication mistakes.

Yeah.

Where I wish, you know, we did things a little differently.

And that morphs even into another one—the cheering up one.

Yeah.

Well, there’s a couple—it morphs. This communication is in various questions. It’s very important.

Before we— the cheering up: how does the caregiver reinforce self-awareness around emotional regulation in a way that is received, to not trigger an emotional outbreak?

There are a lot of times you fucking trigger me.

That’s not what I was going—

There are a lot of times I want to address something, but I know I will trigger you, and it’s going to lead to a blow up.

And I know that you’re doing something wrong—or you’re thinking a certain way—and I want to course correct. Course correct. But a lot of times you don’t hear it, or you don’t want to hear it.

And I have to be—

So there are times like, I want to be like, “I need to tell her that…” Oh, I don’t think buying that couch is a good idea because the color is going to clash.

That’s totally not something that has anything to do with anything. But I know you’re going to take it the wrong way and it could lead to something.

Or you won’t hear it. You won’t hear it.

You just… and when you are in an emotional state, you—

Thank God those have gotten—your outbursts have gotten much, much, much, much less. Much less.

There are—when you would really be in it, you wouldn’t hear a thing I was saying.

No.

And I would try to be fixing things and stuff, and meanwhile—

Well, this is an important one, and I know you were also questioned about this: the biggest thing when someone is going through a spiral—like an emotional outburst—and this applies to everyone, but it’s amplified for somebody with a brain injury—is they just want to be heard.

I just wanted you to hear me. And I just wanted my emotions validated.

And one of the things that, you know, we fight about—and it’s yes, that we fight about—is sometimes I don’t want a solution. I don’t want you to fix the problem. I just want you to fucking hear me.

And I just want to be angry, and I just want to be sad. I just want you to listen to me. I just want to be dramatic. I just—

And then once I’ve had my drama, a few hours later, we can talk productively and be like, “Okay, well how do we move forward?”

But one of the biggest conflicts that we have had—patient/caregiver—is that you immediately jump into offering solutions or offering the other person’s perspective.

Well, you can’t say what do we fight about all the time. With the thing I say, I’m their side.

Yeah. I always say, “Why do you always play devil’s advocate? Why do you—”

“Why do you always play devil’s advocate?”

Because she’s always offering the other person’s perspective. And the thing is, the caregiver or the patient—we just want to be heard. We just want to be angry. And then you can give us the perspective the next day.

And I should learn to wait because sometimes… but when you’re in it and you’re getting ramped up, and you’re like— I’m thinking, well, if I give her that perspective, maybe it’ll… and she’ll stop, because she’s getting—you’re getting mad, or more upset about something.

And I’m like, I really should just let you vent. I just worry that in that process you’re going to say something to someone or do something that sometimes then you can’t come back from.

Yeah, because once you say something to someone or do something, it’s there.

Yeah. And I’m trying to head that off. But sometimes I think I make it worse.

Yeah.

But funny side note is I was recently talking to a friend, and we were talking about you. And you love me, we’re very close, and this experience has brought us very close.

But we were talking, and I said to them—I was like, my mom said that. My mom brought that up—like your perspective. And I was like, honestly, if we were in an argument, my mom would most likely nine times out of ten take your side.

And they were like— they were like, “I don’t believe that. That’s not true for a second,” because they know how much you love me and how close we are.

And I was like, no, you don’t understand. My mom is always playing devil’s advocate.

But it’s not taking their side.

I’m not taking their side. And this is something obviously we still got to figure out—this communication piece of it.

I’m not taking their side. I’m just giving you their perspective. I’m not saying they’re right.

And I never—unless I really feel you’ve done something wrong. And sometimes I don’t even know how to tell you because I know you’re just going to like—

So that is a real valid thing.

You do have a frontal lobe brain injury. So your emotions are more up and down. A little unhinged. Sometimes your executive functioning—your executive thinking—is not good. Not very cash money.

So you get stuck on something, or you get upset about something, and I’m trying to show you… because sometimes you’re not right.

And I don’t know— and that’s such a good question here because it is hard, because a lot of times when I do say something it does make it almost worse, and you get only madder.

But there are times you might be wrong.

First of all, I’m always right, so that’s not true.

Even when I’m wrong, I’m right.

So it is very hard. But maybe I need to let you vent and then address it.

But again, I’m worried about—

This is what I’ve been saying to her.

No, but I’m worried when you go off—and again, it’s gotten much better—that you’re going to do something or say something that you can’t come back from. And I’m trying to stop that, but maybe you’ve got to learn.

I think then this ties us into another question.

Yeah, absolutely. Flowing.

You are the biggest problem with patient/caregiver. What’s hard is caregiver can sometimes be too gloves-on and too overprotective.

And the reality is you are. I mean— I know what you saw me in.

The reality is that I still have a brain. Albeit not nearly as good, I still have a brain. It’s a wonderful brain. And it’s beautiful.

I still have a brain.

And a lot of times you need to let the patient learn for themselves.

You need to let them try, and you need to let it not work out. Or—if it’s not something that’s too bad.

Or you might be surprised.

You need to have more trust, and you need to have more faith in us.

I’ve done a lot of things that no one thought I could do.

I’ve also made a lot of mistakes that you needed to let me make, because I wasn’t gonna… you warned me against them, but I was not gonna fucking listen.

My dad knew me moving back to LA as early as I wanted to was a horrible idea. It was horrible. But he was like, “We need to let her figure that out on her own because she is not taking no for an answer.”

My neuropsychologist—the one that I currently work with—when I was catching her up to speed in our first session, just telling her everything that happened, I was like, “Yeah, I honestly don’t know why they let me move back that early. It wasn’t that good.”

And she said, “Just from talking to you for 10 minutes, I can tell that you’re the kind of person—if you want to do something, if someone tells you no, you’re not listening to that. You’re still going to do it.”

And that’s so true.

And I was always like that.

We’re going to get to that.

But I’m just going back to what we were just saying and letting you make the mistakes.

But you have to understand that there is a fear that some of those mistakes can be bad.

Yeah.

And again, sometimes your executive functioning, executive thinking might be… that. And thankfully you’re okay, but some others might be worse, where it’s just going to be a really bad choice.

And yes, we have sometimes—but it’s hard. After nearly losing you… after nearly losing you, all I want to do is put those gloves on, wrap you in bubble wrap, and never let you out of my sight again. Never let you get hurt again.

And I know that’s not a valid reality.

But you’ve already been hurt so much. You’ve been hurt so much.

And I have a horrible fear of you doing something that, you know, in the moment is a mistake and gets you hurt worse.

When you’ve had some of those outbursts—which thank God you don’t have them—I was worried that a cop might be called on you.

I’m in New York. You’re in California. You’re in someplace public having a 100% meltdown, not hearing me, and I’m like, “Somebody’s going to think she’s a crazy woman and they’re going to call the cops.”

Yeah, they wouldn’t be that wrong for thinking that.

No, but there were times I was afraid I was. And again, I’m 3,000 miles away, and we have no support system out here.

You know, it’s not like I have a sister or brother or cousin—anybody out here—that could be like, “Gabriella’s having a meltdown.”

You know, there were a couple times in your studio apartment I called the lady across the hall, and you get mad at me.

But you were in such a state that I didn’t know what to do, you know? And I worried that you—something would happen, or you’d hurt yourself, or, you know, people would call the cops. “She’s crazy,” you know?

So that’s definitely gotten better.

And yes, you do have—and you have made some of your own mistakes. You have.

Oh, definitely.

But it’s all the learning process. Every mistake is what led me to here.

Yeah.

This is—and to be clear, that is not me saying, “Yeah, go fuck up your life. It’s totally fine. You’ll learn things.”

No. I’m just saying… and I think as a caregiver, you have to figure out which mistakes that it’s okay they can make.

Yeah. It’s not life-threatening. It’s—

But it’s very hard because all we want to do is protect you. And I think you’ve got to kind of pick and choose the moments. I think I’m getting better with stuff like that.

You’ve just got better in general. And there’s a lot less corrections that need to be made.

But, you know, it’s still a journey that we’re traveling. It’s not done. It will never be done.

I’m moving on to another question.

“My daughter often gets upset when I try to cheer her up when I should have let her have her feeling.”

So that’s kind of what we were talking about. It’s okay to just acknowledge your feelings and not try to change them.

Yeah, and I think me playing— it’s not trying to cheer you up. Like, when you say I’m playing devil’s advocate, I’m just trying to decrease it—not cheer you up.

But there are times when you’re angry and I try to make light, or… yeah. You don’t—you’re not having that.

No.

And that is—I think we do have to let you just have those feelings and let them run, as long as you’re in a safe place.

There are times when we kind of have to step in. Especially in the beginning, you know, when you were having your tirades, right?

Yeah.

You know, your emotions sometimes you really got the better of it.

They did. I’m not going to say they didn’t.

No. It was bad.

Yeah, it was bad.

But, you know…

What do you think is the most phone calls you gave me in a day?

Could be. In my book I’m like—my mom loves to bring up the fact that I called her 27 times one day.

I think it was 27 because you’ve said it about 10 times.

Have I said it? My mom loves to bring up the fact that there was one day early on where I called her 27 times. Whenever she’s talking about how hard it was when I first moved back to LA—and don’t get me wrong, this is…

Whenever she’s— I’ve probably heard you 15+ times say, “There was one day she called me 27 times. And one day she called me 27 times. There was this one time. In 24 hours she called me…”

Stop. Stop.

I just almost said 27 in Italian, but I stopped myself.

2-7 Yeah. 

Ventisette!

But there was a lot of calls. There were a lot of calls, and there were a lot of things you wanted me to fix from 3,000 miles away.

Yeah. And I think that’s also—I don’t know if somebody asked a question about the caregiver—

Enabling.

Enabling. Knowing when you need to step aside and give more independence and it’s okay to figure it out yourself. That’s one way of saying it.

Codependence—how to recognize and avoid it.

I think a lot of these kind of go hand in hand.

With me calling you 27 times.

In case anyone forgot, it was 27, 27, 27. Ventisette. Here we go.

The tips for boundaries, which kind of goes hand in hand.

“How can the caregiver best support the loved one without enabling?”

A fine line between boundaries and enabling.

And I think that kind of goes hands in hand with codependence: how to recognize it, how to avoid it. And also knowing when to step aside and give more independence.

I think they all kind of go hand in hand.

And I definitely enabled, yes.

Um, we were definitely codependent. Can confirm.

I call her my assistant sometimes.

You do! You call me your assistant.

And there are times I’ve wanted to say, “You need to…” Should I put you on the Gabriella Rebranded payroll?

I think so.

Okay.

Let’s go talk a little bit about your move back to LA.

So Gabriella was home in Manhasset, sitting on the couch day after day after day. And I could see her spiraling into depression. So incredibly sad.

I was lonely.

You were lonely. You were lonely.

You saw everybody’s lives were continuing on. That was a big piece of it.

Social media, the bane of our existence.

You’d see… Friday would come. Friday would come. Your mood from Friday to Sunday was horrible.

You’d be on social media, and as much as we said, “Don’t even look,” it would come up. And everybody’s out, having a good time, and you’re sitting on the couch.

You were miserable. You were miserable.

And on occasion you might go in. You couldn’t drink. You didn’t have the energy or the stamina to really stay out late.

But everybody’s life was moving on and you were stuck on the couch and caused your spiral.

You did try going back to work a couple hours way too soon, but it really upset you that your life was just put on hold. And it felt like everybody else kept going, and you didn’t know what your future was gonna be, or how it was gonna be.

And it was so hard for you. And it was hard for me to watch.

And a big thing—the reason why I wanted to go back to LA… so that is a big thing that I’ve uncovered with writing and reflecting.

Is that I thought the longer I stayed out of real life, the longer my life was on pause, the everything that made me “me”—me—is going to go away the longer I stay out of it.

And I don’t want to lose myself.

And so you’re on the couch, you’re watching everybody’s life continue on, and you had just signed with an agent before the accident. You know, you still thought, “I may be acting. I could get back to it.”

You just wanted to get back to your life.

And you said to me, “I’m just dying on this couch.”

I’m just—

And I didn’t want you to go back. I didn’t want you to go back.

And it was also, to be clear, it was not— I lost half of 23, I was losing 24. And that’s how you kept saying it.

You’re like, “I lost my two—half my 23, losing 24.” And you kept saying that.

I still now, I don’t really feel like I got to even live 25.

You probably didn’t.

And I feel like I barely got to live 26. I feel like 27 is the first year that I feel like I’ve gotten to live this year.

Really?

Mm-hmm.

That makes me sad.

That is—but you have… you can live. You are living. And you’re going to be living.

And that’s what the—remember I said my perspective is wrong. You know, I got to…

I think I got to live the end of 26.

Yes.

And so we let you go back because you just were miserable here.

I went back with you. I don’t know how long I stayed. Did I stay about two weeks maybe?

Yeah. When I first moved you back, I think I stayed about three weeks. And that was end of June, July—right around July 4th.

Right around July, because that was my big thing. I wanted to be back for the 4th.

You wanted—that’s it. You wanted to be back for the 4th.

And you were very lucky you had a friend who you went and stayed—

I knew you had 4th of July plans. I left you in that stupid studio apartment all by yourself.

And you knew it was a bad idea. And I walked away and got on that plane and just was like, “What am I doing? What am I doing? How am I letting her do this?”

But again, maybe this goes with—you had to see for yourself.

But I think I was a little more optimistic. I thought you were going to step more back into your life.

You had friends that were a block away, but then one of your friends ended up moving to London, and the other one moved further away… had the roommate move further away, right?

Oh, no, no, no. Well, yes, they did, but I also had a panic attack in front of them, and they stopped being my hashtag friend.

That’s true. Let’s be clear. I don’t want to say that, but yeah. That’s true.

Oh, your mama knows every friend who has walked away from you.

And it’s not worth the anger. It’s not worth it. It’s not worth the anger.

But I just would like to see each one of them one time. Just one time and be like… say a couple of things.

But I still don’t know what it is that I would say. See, I don’t even have anything that I want to say.

I think my friend Jack gave me this. I think this is all rude: when you’re going to do the “Hi, how are you?” I just go, “We don’t have to do this.” I walk away.

But anyhow.

It just… there’s no—“We don’t have to do this.”

Anyhow, so you came here—I thought—but again, your friends had work and their lives were busy, and you were alone a lot and lonely.

I didn’t have work friends.

And you didn’t have work friends because you had a remote job. Your job was remote. And no one was like inviting me out because no one was inviting you out.

No, they were not. And it was bad.

Yeah. It was so bad.

Yeah. You just sat in that studio apartment and were miserable.

And then, like I said, Jack ended up moving back to New York not too far after, right?

Um, Lizzie went to London.

Yeah.

So all of a sudden I was like, “Oh boy.”

You know, Lauren Lopez—she moved back now—but she even moved away.

Yes. I’m so glad she moved back. I’m so glad she moved back to you.

Oh, that was so bad.

So you were very lonely, and there were a lot of mistakes.

And it was when I realized how many deficits you still had.

And I don’t know if you want me to talk about any of those, because you may not want me to.

I mean, are you kidding me? I’m so open on this podcast.

You know, it’d be, “Mom, there’s a beeping in my house. What’s—there’s a beeping in my house.”

Okay, let me listen.

“Gabriella, that’s the smoke detector. You need to change the battery.”

“Oh, it is?”

Like—and I’m like, “You’ve heard this sound before. You knew what that was in the past.”

You had no idea.

“Mom. Oh my God, when I lost the TV remote…” and I didn’t realize that I lost my TV remote—and I wanted to turn it off so I could go to sleep, because I was very strict about my sleep schedule. Brain injury: I need my rest.

And the light from the TV and the noise—I was like, “How am I going to sleep? I can’t turn it off.”

And I literally called my mom freaking out. Like, “I don’t know what to do. I lost the TV remote. I can’t turn it off. How am I ever going to go to sleep?”

And she was like, “Just unplug it.”

And I was like, “Wait… you can do that?”

Yeah. I literally said, “Wait, you can do that?”

USC, class of 2020.

And also, Magna Cum Laude.

It doesn’t know that you can turn off a TV by unplugging it.

You would have known that. It’s just, you know—there was just—there were some big deficits.

“Mom, my freezer door is broken. Something’s wrong with my freezer door.”

Okay, Gabriella—put me on FaceTime. It puts me on FaceTime.

“I think you have too much food in the freezer.”

“No, I don’t have too much food in the freezer.”

I’m like, “Why do you have so much food in your freezer? You’re one person.”

But I think you got—

“No, I don’t.”

We call the manager of the building. She gets on FaceTime. She goes, “She’s got too much food in her freezer.”

The door just wouldn’t shut. And there was nothing wrong with the door.

Oh, Mom.

What now?

“I threw my keys.” I did throw my keys out multiple times, but I’ve talked about that in the podcast. Excuse me—object permanence, I test really low in.

But that maintenance guy—he dumpster-dived for you, and he got your keys.

And who has dumpster-dived twice since? Once for keys, and once for this necklace.

Which, by the way, this was recently. This necklace—by the way, yes, I dumpster-dived for it.

I’m not the one who threw it out. My friend was. And she dumpster-dived with me.

It was an accident. It had to do with Halloween. It was an accident. And I got the necklace back.

You did get the necklace back.

Dumpster diving is becoming my norm.

If anyone needs anyone to dumpster dive for them, I’m really good at it.

But there were so many instances like that where I said, “Oh my God.” Like, there was like… I’m like, “This is my brilliant daughter,” and she can’t see she’s got too much food in the freezer.

Like—that was…

So the first year that you were back, I was here every month, anywhere from one week to three and a half.

Do you remember when it was three and a half? Do you remember when that was?

Yeah. It was after—well, but it was… after I came back, it was December 2020—the worst month of my life.

And when I came back in January, I forget—oh yeah, I remember a couple things went very, very poorly. And I was like, “Well… I kind of want to die.”

I didn’t have a plan to kill myself, but I was—I remember this so clearly. I didn’t have a plan to kill myself, but I was like, “If another car hit me, that would be A-okay with me.”

And what did I do?

You stayed for three and a half weeks.

No, but do you remember what I did?

You called me and you said to me—I don’t think you’re okay with me saying this.

Yeah.

“I don’t think I can do this anymore. I just… I might kill myself. I don’t think I can do this anymore.”

And I was staying in a hotel. Remember, I’d stay in a hotel because I was trying to give you space. I wanted to be close, but give you the space.

And I checked out of the hotel, and you and I stayed in that little studio apartment together.

I was there three and a half weeks.

Yeah. There was a whole bunch of stuff going on.

And then I think I was talking to your neuro—

I didn’t leave until your neuropsychologist had a couple of sessions with you.

My neuropsychologist at the time. Not my current neuropsychologist.

And said you can go.

Yeah, she—you can go.

But she even said, “You are not to leave.” Like, she knew I could not leave.

And I didn’t leave you.

They didn’t leave you.

Yeah. That was scary.

Yeah.

Sorry—caregiver. Aye yi yi.

Learning to live with fear and uncertainty, living in the present but plan for the future.

That’s hard, but we’ve been doing it. That’s kind of been…

You just got to kind of keep going with that.

You always have to choose love. Try to not listen to your fear.

But it’s hard, man. Humans are inclined to choose fear. And especially when health is a big part of that, obviously you’re going to want to choose fear.

It’s really hard.

But you need to choose the love of the person you’re caregiving for. And you’ve got to trust them a little bit.

You’ve got to try to trust them a little bit.

It’s hard, but you’ve got to try to trust them a little bit. You know?

I moved back way too early, but like… look at the life I created. It is amazing.

It was a fucking ride, but look at where the ride brought me. You know?

Yeah. You know?

I didn’t give up. I didn’t say, “I moved back way too early. I want to come home.”

And we didn’t make you come back.

I said, “I moved back way too early, but I’m fucking toughing it out.”

Yeah. And I did.

Yeah.

And now look at where I am.

Yeah.

So you need to remember that we still have brains.

I do remember you stuff. I know.

But when you get so caught up sometimes in those emotional… it’s, you know— yes, of course you have a brain.

But we do have to let you make—again—make some mistakes and figure it out yourselves, but in a situation that, you know, they’re not going to hurt themselves.

And I think that is also an important one: caregivers maintaining boundaries.

Caregivers—just like you have to trust us—what caregivers also have to do in giving us more trust is another thing that’s hard for caregiver: accept the fact that in enforcing their boundaries and not enabling, there are going to be times where we’re fucking pissed at you.

There is going to be—by you not enabling and having your boundary—I’m going to be mad.

How many times have you gotten mad at me?

You call me and I don’t answer my phone because I might be in the middle of doing something and I don’t answer my phone—how many times have you gotten mad at me?

A lot. A lot.

So I, yes, I keep my phone at work and a lot of times, you know, nearby.

I’m like, “Oh, my daughter’s calling me.” I jump. If I see the call, I jump. Because if I don’t answer the call, you get mad at me.

Because it’s really hard with the brain injury—we want to clear up things right away when they’re on our mind.

And it’s unfortunately—I’ve talked about this—that your parents or caregivers, they get the brunt of it.

With other people—friends and acquaintances and professional relationships—I like don’t show that side of me. But with my parents… I’m like, I need to fucking get— I’m like, I need the one person who’s gonna let me clear it off my mind right away.

But at the same time, from your perspective you’re like, “I still have a fucking life.”

So it’s hard because it’s like we both have needs and we have to meet in the middle.

But that’s again—those boundaries and meeting in the middle is accepting the fact that sometimes I’m gonna be mad at you. But there’s boundaries that you have for me.

But also me.

Because there are times when you call me and I do answer, but I’m in the middle of something, and you get mad.

“Okay, that’s more important than me. You go play your bridge.”

And I’m like, “There are other people involved, and I can’t step away and have a half hour conversation with you.”

“Are you okay?” I’m always like, “Are you okay?”

And you’re like, “Yeah, I just blah blah blah blah.” And I’m like, “Well, I’m busy.”

And that’s my boundary too.

I know.

But you’re right. I just have to let you—

You have to accept the fact that I’m going to be mad at you. So in enforcing it, you have to accept the fact that I’m going to be angry.

And you do get angry at me.

Yeah. And—but we, there are… and over time, Mom—over time, caregivers—I won’t get as angry. You have to let me get angry for a period of time, and each time it’s going to get less and less. Because the more you enforce the boundary, then it’s not a shock. Then it’s like: this is how it is.

So by enforcing the boundary, it’s kind of like exposure therapy for me, I guess.

So you know… you know I need to respect some of your boundaries. Understand that, yeah. I’ve got to let you make mistakes, and sometimes that’s very hard to do. Or let you vent, and just pick a time when you’re done venting to actually say, “Let’s talk about that.” And sometimes then you will listen.

But then you also have to be like: my mom can’t be there for me 24/7, you know?

But I think sometimes you expect me to be there—

I didn’t expect you to be there for me 24/7. I expect you to be there for me when I called you.

So the other 23 and a half hours of the day? Do whatever you want, girl. Live your life. I can be at work.

By the way, I want to be clear: I’m not justifying myself. I’m saying this is how my brain works in the moment.

No, I know. But like—I’ll be at work, or I’m… sometimes I’m on the tennis court. And I try not to always bring my phone because sometimes when I’m in a USTA match—

Well, I understand that when she’s playing tennis, she’s not allowed to.

What I didn’t understand for the longest time was bridge. I was like, you’re playing a game with your friends. Can you not say to your friends, “Hey guys, sorry, I need five minutes”?

But a lot of— I know. Now it’s been explained to me the rules of bridge. I did not know the rules of bridge. I didn’t know the rules of bridge.

But there are a lot of times I have stepped away from bridge. I have. Especially in the beginning. I stepped away from bridge and everybody accepted.

But now I’m like… and when I answer and you’re like, “Let me tell you something that I’m mad about,” and I’m like, “Well, I’m in the middle of playing bridge,” and you get mad at me and I’m like, “Oh, well, I’m in the middle of playing bridge.”

But it’s not something that’s in danger. You’re not in danger.

I’m always like, “Are you okay?” It’s one of the first things: “Are you okay?”
Yes. Yeah. Yes. Are you okay?

Because you know what? There’s still that fear.

No. They still have fear.

But it’s a balance. You have to accept that I’m going to be pissed off.

And then… I’m getting better with that.

Yeah. Because it used to be that if I upset you—because a lot of times you’ve gotten better at this—you would hang up on me.

Yeah, we’ve both gotten better.

And now I know I’m not allowed to hang up on you.

And then I’d call you right back. I’d call you right back.

I couldn’t stand you being mad at me, and I’d call you back, and you’d be like click, click, you know—denying me.

Now I don’t hang up on her. Not as much.

I think there might be one or two times… there was—always when you—you’ve got a flat tire—you call me, “What do I do?”

And I’m like, “I don’t know.” I’m thinking, I’m like, “Let me think. What do I do?” I don’t remember the last time I had a flat tire.

See? See why you’re like click?

See why you need to trust us!

I was like, “What do I do?” I didn’t know what to do. And she was like, “Oh, let me think…” blah blah.

And I knew that places were going to close. It was whatever time. So I just hung up on her.

And sure enough, within ten minutes, I was like— I… you called me back, or Dad called me, or something. I think I called Dad and I was like, “I don’t know what…” and I was like, “I’m on my way to the place.” And you’re like, “What?” I was like, “Yeah, I figured it out.”

Yeah. No—and you’ve got better at—

That’s why you need to trust us. I did.

Yeah. You couldn’t offer me an immediate solution, so I had to take matters into my own hands.

A wee little 27-year-old had to do something myself.

You’re in a place I don’t know. I don’t know what— I just didn’t know what type of store I was supposed to call. Who do you call when you have a flat tire?

Well, I figured it out.

You did figure it out.

Yeah. But you—that’s one last time I think you hung up on me.

Yeah, like, I don’t know what you want me to do. You didn’t even give me two seconds to think. Like, you have a brain. I’m just getting old, so sometimes I need a minute to process.

But that day, if I remember correctly, I was just pissed about a bunch of stuff.

Yeah. And that was like the final straw.

Yeah. Not exactly. And it wasn’t— it didn’t have to do with you or anything.

No, no, no. It was like a bunch of guys, pissed off about a bunch of things that was going on in my life.

Yeah. That was just like the final straw.

So I hang up on you, which isn’t cool.

No. I shouldn’t do that. No, it’s not cool. I shouldn’t do that.

So I don’t do that to anyone else, by the way.

See? Your parents get the brunt of it. Your caregivers.

I would never do that to—

Thanks, Gabriella.

There are so often where I’m like, “Oh, I would never do that to a friend.” And stuff I do to my mom and dad all the time. I’m like, “I would never do that to a friend.”

This is a question for you. Yes.

This is a mom who personally struggles with trying to get through to her child when she can see that he needs help. Yes. It means psychological therapy help, or cognitive behavioral therapy. What are some things I can say or do to encourage him to get the help he needs to be truly the best he can be?

Because again, sometimes you all put up walls or you don’t want to hear it, right?

So what do you think? What’s a good way for you?

It might be different for him to approach. And I’ll tell you what I think is the best way.

I know for me, with my recent experience with restarting neuropsych—I had to really fuck up.

You and Dad wanted me to go back to neuropsych for a while, and I had to really mess something up: having another outburst in public.

And then I had to have another friend—like another friend talk to me.

And for—you know, you listen to your friends more than your parents.

See, that’s another thing I do.

And that conversation made me—he didn’t point anything, he didn’t say like, “Oh, I think your brain’s not working in this way.”

He just pointed out: like, “You do this sometimes. You think these things. I don’t know why you think them. Don’t.”

And then I was processing—like I was doing my own reflection.

You have to—and this is my big thing—you have to let them come to their own conclusion and think it’s their own idea.

So that—I was processing. I did my own thought processes on what he had said to me and was like, “Oh wow. These are problems that I still have. I think I should restart neuropsych.”

And then I reached out to you and Dad and I was like, “I think I should restart.”

Or no—I’d actually gone home because I was really upset about this thing that happened. And I was like, “I think I need to restart neuropsych,” blah blah blah.

And you and Dad were like, “Yes! We actually have the name of the person you should use. We’ve been waiting for you to do this.”

So sometimes you need to let them make their own mistakes and then have them think it’s their own idea.

And the book Let Them teaches: ask them questions to make them reflect on, “Why did that mistake happen?”

And even though you know in your head it’s because you still need to go to occupational therapy, it’s because you still need to go to cognitive whatever—even though you know that in your head—ask the question and have them think, “Oh, I think it’s because I have this issue with processing this or thinking about this. Maybe I need to restart this kind of therapy.”

And you’ll be like, “Oh my God, that is such a fantastic idea,” even though you knew that was what they needed to fucking do the whole time.

So—to an extent—let them make mistakes and then ask them, if they’re not doing the reflecting themselves…

I did it myself. Well, I did it because a friend made me do it. I wouldn’t have done it if that friend hadn’t had the conversation with me that made me do it.

There were a lot of times that I say something and you’re like, “Blah blah blah,” and then you’ll call back: “Oh, I was speaking to so-and-so, and they said…” and I’m like, “Yeah.” You know, you listen when a friend says it.

So, so, so: ask them questions to prompt their own reflection. Or ask them questions to prompt their own reflection rather than immediately telling them, “You need to restart this therapy.” Ask them questions. Let them come to it on their own after they’ve made their own series of mistakes.

Or… have their friends say it.

That’s—there you go. Have their friends say it.

I’m gonna let that—I’m gonna mention that the next caregiver.

And I have found what has worked—and it’s like you’re just saying—don’t come at you right away.

I have learned, I’ve been getting better, to just let it ride. And then maybe in a day, kind of plant a seed, kind of bring it up in a light way. Not going at it straight at it.

And it might not be like going back into therapy or whatever. It’s just something where I’m like, “I don’t think she’s seeing this right.”

But let her have her emotions with it. And then kind of bring it up in another way, and bring a different perspective, and kind of get you thinking about it in another way—a roundabout kind of way.

I’m trying to do that because I think sometimes that works.

But sometimes it can’t be something in the moment. Like, if I see something, I can’t sit right in the moment with you. I have to wait for the right moment.

Waiting for the right moment is not always easy because sometimes with you, I don’t know when the right moment is.

And I’m an impulsive one. Aries. I don’t—

With Aries with a brain injury.

I say my biggest thing about restarting neuropsych is I am really working on my trauma and CBT. Is that a lot of the things that I attribute to being an Aries are just trauma and CPTSD.

And I’m like, “Oh my God, it’s because I’m an Aries.” And it’s like, “No, it’s because you have unresolved trauma, bitch.”

And also because I’m an Aries.

Yeah.

It just so happens that a lot of Aries characteristics check out with people who have frontal lobe injuries and CPTSD.

See, it was written in the stars that I would get hurt because I was already—as an Aries—I was already living out a frontal lobe injury. I was already living in the moment. The frontal lobe injury just emphasized it.

Oh my gosh, Gabriella.

But yeah. And the trauma emphasized it. But I was already doing it.

Well, I will tell people—I’m like—and Dr. Herman has said this—that some of the stuff that’s come up, it’s just old Gabriella on steroids.

That’s what I—

Well, because a brain injury, it highlights all…

The one thing that has come to me, the whole caregiving thing: but you get caught—and I’m not sure if this is common of people with brain injuries or frontal lobe injuries—you get caught in a loop.

That’s frontal lobe injury.

Like if you get something in your head—and I think it’s frontal lobe injury—and I still… I still haven’t figured out how to break you out of that loop.

It sticks. It sticks. It sticks.

And it could be something a year ago and you’re still stuck on it.

And it kills me because I’m like, “It happened a year ago.”

And I don’t know.

And I guess I have to figure out—or, you know, I don’t know how to get you out of that loop. That’s a hard thing too.

Yeah. And if you’re stuck on something, Gabriella—oh boy—you’re like a dog with a bone.

But yeah.

And so you’re aware, though.

Yes, that I get stuck on things.

I’m aware of that.

Yeah.

But I also have noticed with me is that the things that I get stuck on now—not at the beginning. In the beginning, it was just getting stuck on things.

But now that I’m more healed, the things that I get stuck on is when someone fucking crosses a boundary of mine—that will live in my head.

It also has to do with the fact that I’m a Taurus Mars, so…

Oh my gosh.

Taurus Mars is: we have very long fuses, but if you do something that flips our final switch, you have flipped our switch.

And that’s me. I’m a very forgiving person, as you know. But when you cross my boundary—and this also has to do with a frontal lobe injury—these are the things that it’s…

See, the Taurus Mars is: the switch is flipped. The frontal lobe injury is that I can’t stop thinking about it.

And every time that person’s name is brought up in conversation, that’s all I think about.

And I’m like, so maybe one day we’re going to work on changing this, but for now: people beware. You cross a boundary of mine.

But you have to understand: those people might not understand they’re crossing a boundary.

Oh, I’m aware.

It could be something that… oh, they do and not even think about it, you know? So it might not even be—

I’m aware.

You know, but I just wish—having gone through this whole caregiver thing and seeing the pain— and when I talk about pain, it was the physical pain initially. It was emotional pain down the road…

I just wish people got brain injuries a little more.

And they don’t. And they don’t.

And I just wish you were given, by certain people, more grace. More grace, more grace, more grace, more grace, more grace, more grace.

And it came from all directions. It came from all directions.

I felt it.

And I know there are sometimes I don’t even want to say things to people because I’m worried about judgment.

And it’s—I know it’s something you can’t even help—and—but I feel people are judging you.

And when you have an emotional outburst—and I know you’ve had some—where I, you know, and those people hold on to that.

And, you know, a panic attack—you had a horrible panic attack and look: a friend never reached out to you again.

And I was like, “Seriously?”

This is somebody you knew for years. You knew what you went through and never reached out to you again.

It was a bad panic attack. It was bad.

I was in California at that time.

No, no. And I even came. I came.

But I just wish…

And the people who you’ve met since who don’t even know you from before get it, I think, even less in some ways. Because they don’t know the extent of what you went through.

And no one understands—it truly is such a hidden disability. And it’s really sad, because I want you to get the grace, but I don’t want you to be seen as the girl with the brain injury.

So it’s a double-edged sword.

I don’t want people being like, “Oh, she’s got a brain injury,” you know?

But yet I want them to be aware so they might give you a pass on some of the stuff that happens—even though most times they don’t, but sometimes they do.

It’s such a— and I’ve said that’s you.

I don’t—why do you bring up the brain injury? You know, like I don’t want that to be what defines you.

And as a caregiver I definitely don’t want that because you’re more than that brain injury.

Yes, will it be something that’s with you the rest of your life? 100%.

Will it be hopefully more of a distant memory? Maybe not in six months time, but yeah.

But it’s always going to be something.

There’s so many things you have to be careful.

But I’m worried about you getting hurt again.

So were there any other questions we haven’t yet really—

Another question, but there was a quote. And this is for caregivers, if there’s any caregivers listening.

And this is one of the caregivers that I know—her therapist likes to use the analogy, you know what they say in the plane: putting on your oxygen mask first so you can help your loved ones with theirs.

And that’s what the therapist says, and that is so true.

The caregiver has to take care of themselves first before they’ll be…

I remember when you first got hurt, so many people saying to me, “Are you taking care of you? Are you eating? Are you…” you know? Because you’re of no use to her.

That was an acute situation.

So even this is that I can only help you when you need me for your amount and a phone call or stuff if I’m in the right mindset.

And I’ve got to do the things that bring me joy too.

Tennis and bridge.

Tennis and bridge. And paddle and pickle.

And I do love—I love working. You know, I have two jobs. I like working my jobs and being with other people and helping.

And I have to—but I have to do those things for me.

Yeah. Because I’ll be of no use to you if I can’t.

And I had to learn that the hard way. I had to learn that the hard way.

Because then all I’m doing is helping you with your stuff, helping you with your stuff.

Not that it’s not as much as it was.

There was a time period that it was a big portion of my day.

It was helping me. It was helping you.

I’m not even talking about when I didn’t mind taking you to your therapies. It hurt me that you were sitting on the couch a lot. I didn’t mind—we, you and I were together so much. I didn’t mind that.

I’m talking more when helping you manage the things or your outbursts or when you were upset about something.

Or, oh my gosh—I just felt there were so many things that went wrong.

It was even, you know, silly things. You know, it could be a slight fender bender, you know.

There was so many things that went wrong. And I was only better to help if I actually took care of myself.

And I don’t do it.

Then I know you’s still annoyed with me, but a caregiver needs to be in therapy too.

Yes.

And it’s funny that you say that because you don’t do it.

I know.

But a caregiver absolutely needs to be in therapy just as much. And I know that I would have handled things differently if I did.

So why don’t you go?

I think at the beginning was just time.

Yeah, but why not?

I don’t know. I just—again, I have to make the time for it. Once I do, I think I’m loving.

And how are you telling others that they should go, but you weren’t?

Because I know it’s something I should do for myself. I know it’s… it would even probably help me to set the boundaries.

Or when Gabriella says this, how should I, you know… blah blah blah.

It would help so much. It would help me.

And shame on me. Shame on me for that.

But you know, this has been a very difficult journey.

It’s been a very, very, very bumpy journey.

Again, I said it before: I saw you from immense physical pain to periods of incredible emotional pain.

I’ve seen people not treat you right. I’ve seen people hurt you.

The friendships that you’ve lost—it’s mind-boggling to me. It’s mind-boggling.

The lack of grace that sometimes people don’t give to people who have gone through something horrific.

Horrific.

And I believe you had on somebody who was a different injury—I’m blinking on her name. I’m sorry.

Cat Prescott?

Yes. Yes.

And I believe she had a different injury, didn’t involve her brain, and she’s still lost friends.

Yes. She lost a lot of relationships, yeah.

Because I don’t know what it is.

I think sometimes people don’t want to deal with… I don’t know. They don’t have the capacity.

But in the long line, they don’t have the capacity to give what you need.

I think you’re better off without any of those people in your life.

Everyone’s vibrating on a different level. But you’re better off without any of those people in your life.

And your real friends are going to be the ones who will stick it through.

And you have some of those who’ve been with you since before who is still with you, right?

And hopefully you’re making new friends as you go on.

And maybe it’s a good thing to weed out some of those friends in a quick way, you know?

Not quick, but you know what I mean.

Yeah. It rips the Band-Aid off.

Yeah. You know, it was hard.

And you also— and Cat and I talked about this—you also have… you see the best in people because you see people show up for you.

You know? You see some people show up for you or offer you things in a way.

But I have— I say you question friends.

Not the friends that you’ve had, but it’s very hard for you to trust initially or to just accept that they are your friend.

Or like if they say something—make a comment—I’m like, they are your friend.

You know? It’s just…

I have a very hard time trusting.

Yeah. You have a very, very hard time trusting.

Maybe a little bit even before the accident, but it’s very hard for you to trust.

And you panic—like if you think you’ve upset a friend, you panic almost.

Because you don’t want to upset anybody or have them upset with you.

But it is hard for you to trust.

And I see sometimes—I think you’re a little hard on friends.

Not to them, but because you’re saying, “Oh, you know…” blah blah blah.

And I’m like, but they’re your friend. We all make mistakes and, you know, they didn’t mean it in that way.

And I think because you’re so afraid of somebody walking out on you again.

Yeah. I’ve talked a lot about that on this podcast.

Yeah, yeah. It’s definitely part of the CPTSD, but it’s—you know—I lost a lot of people, so it—

Yeah, you have. You have. And I’ve seen it.

Me and Cat had a big conversation about this.

Yes, I know that, yeah.

And I know everyone. And I know everyone.

It’s, you know, it’s…

Mother Bear.

It’s this—this injury has the subconscious belief, which I’ve been undoing for months and doing the work.

But the subconscious belief that you can’t drop me if I drop you first.

Because I was dropped by so many people.

Yeah. And that’s—that’s life.

That was very hard for me as a mom, dear.

When I—at the beginning right off the bat, there was some people who didn’t show up for you.

And it kept me up at night. It kept me up at— I couldn’t wrap my head around that. I can’t.

I still can’t. Still cannot wrap my head around that.

Well, because you can’t use rationale to understand an irrational decision or an irrational behavior.

Yeah.

So you never will be able to understand it.

No, I would never. I can’t imagine doing that to someone.

No. No.

I hope I’m a better person than that, but I don’t know.

It’s been a journey.

Anything more you wanted to say to me or ask me as a caregiver?

I don’t want you to give a toxic-positive answer to this.

Okay. I won’t.

I want you to be real the way you answered this.

But in comparison to who I was—and I know I lost a lot and there’s a lot of stuff that you miss—do you think I’ve gained more?

Yeah.

There are certain things you’ve lost that’s horrible—like I feel like maybe in time it’ll come—the ability to work a standard nine-to-five job where you’re… you can’t control your hours. To me, like, that’s so upsetting that you can’t— that you can’t do that, even if it was something you wanted to do.

So that’s a loss.

But I look at the person who you are today: very self-aware, always working on yourself, trying to stay physically healthy, emotionally healthy. I think you are in a better place.

I think certain things are still coming.

I still think there are friendships to be found, and hopefully—because I would like to see that for you—just to make up for some of the ones that are lost.

So there is still—and there’s still going to be growth from you.

But when I look at you, yeah, I think… definitely.

You are, I think, in terms of your overall well-being, you are in a better place.

Are there certain deficits that will always be there?

Of course. There are, you know.

Do I get sad over—and I mentioned this the other day—if it’s something simple as you might not be able to go on a roller coaster… there is just some things I’m going to worry about.

Like I know you want to ski, and you should ski again, but I’m going to be like: buy an extra padded helmet. Like, there are just certain things like—

This winter I’m going skiing.

Yeah, good.

It makes me sad that like I know you’ve got to say, “Okay, if I’m going out Friday, I can’t… I might not go out Saturday because I can’t do both because the fatigue.”

Like those are things that upset me.

But I think in terms of you and who you are inside, you’re in a much better place than you would have been.

Yes.

There are certain physical and emotional things that, you know, will never be what they were.

But I think your insight into yourself is amazing. And the self-care that you give to yourself.

And I think you’ve learned to give yourself a little bit of grace.

Oh yeah.

And I think that’s all good stuff. That’s all good stuff.

And I’m hoping you’ll just keep developing the tools to manage the mental up-and-downs. And learn how to… you know, because let’s face it, you have some memory issues—learn how to deal with those. You know? And figure out the tools you need to do that.

But yeah—I’m… I don’t think that was a toxic-positive. I think—

No. That’s real.

There are certain things you lost, but there are certain things you have gained.

Okay.

And then my final question for you is: what do—

Do you think—we’ve talked about how the caregiver-patient relationship is very complicated, but do you think there are any good parts of the caregiver-patient relationship? Like, what do you think this whole experience has done for our relationship?

Oh, it’s brought us so much closer. 100% it has.

I think you know—sometimes your fear of trusting—you know your family’s there 100%. Yeah.

I think you know we would do anything for you. Anything.

And including, like I said, if God that day would have said to me, “She will get up, not have one mark on her, and walk out of that bed… if you go up…” I would have done it. If I would have thrown myself off that roof. And I think you know that I would do that.

Yeah.

I think even with Dad—your relationship—I think with Stephen, with all of us—we’ve gotten so much stronger.

Well, you know, my mom and her 27 phone calls in one day.

Prior to my accident, when I was at college and stuff, you were lucky if I called you once a week. Now you call me more than once a week.

Or we texted. No, we texted. We did, but maybe not calls. But we didn’t speak on the phone very often.

Hey, like I told you, you know, I can’t even imagine sending you abroad.

I know you keep talking about Italy. Well, I’ll be a mess. I’ll be in a panic, but at least we have family there. We have family there. We have family there.

Also, don’t worry—I’m touching down to at least three boyfriends. I’m the beauty standard in Italy.

There you go. I’m the beauty standard.

Stop, stop, stop, stop.

But I also go back—in Italy, not in the United States.

To caregivers and recommendations. I know we touched on a few of them: definitely be in therapy, self-care, take care of yourself.

And also for caregivers—they have to remember if they have another child, there’s another child that needs you too.

Yeah. And that’s huge.

There are times like I felt poor Stephen—you know, I just couldn’t be there for him. I couldn’t be.

If he needed me, I was… I was, but Stephen doesn’t… you’re very different people. Stephen doesn’t ask, you know, for as much, or—

But that was even the case before the accident. It just got worse.

You were always the child that, yes, got more—more of my attention. Just needed more of my attention, or you know, just whatever—

Because I demanded attention.

Yeah. And I—but I try. I hope—and he would have to answer this—I tried my best.

But people have to remember there is, if you have—there’s one, two, three, four—there’s other people.

Other children, yeah.

Yeah. And like I went this year for his birthday. I just went down there for the week and I’m like, he needs to know he matters too. Because I’ve come out here all the time.

I don’t—he doesn’t have the time for me either to go there. But like he needs to know he matters to me too, and that I’m there for him.

So if you have another child…

And also if anybody can get into an emotional support group like I found—they’re very hard to find—but if you can get into one…

But LoveYourBrain, which you’ve discussed many times, they have caregiver groups.

Yes. Every couple months they have caregiver virtual meetings—mindset for caregivers. And that’s what I used.

And like I said, we still meet once a month.

And I’ve been very bad the last couple months. And I think I was in an emotionally really bad place.

I think coming up on your four-year anniversary—I don’t know—it hit me really hard that we’re still traveling this road.

And it got really driven home to me when I came out here at September. Was I here in September?

And we met with Dr. Herman and we discussed your latest neuropsych test results, which were good. They were good.

But there were certain areas…

Below average. Below average.

Oh, object permanence is still like 1%.

There was a lot of below average.

I clarified to my friends after I got those results. I was like, I will still be losing my phone all the time. Oh my God. And I may accidentally throw out my keys again.

But I’ll always dumpster dive for them, and that’s what really matters.

But yeah—that, I think that put me in a really bad place for a little bit, you know? Knowing that it’s not over. It’s not over.

And when he said to me—when he was asking, “What are you doing?” and I’m like, “Oh, you know…” and I kind of answered.

I’m like, “Oh, she’s got her podcast going.” And I said, “Oh, I don’t know if she can work a 9-to-5 job.”

And he looks at me. And he’s like, “You realize the extent of her injuries.”

I’m like, “Yes.”

And he’s like, “95% of the people couldn’t go back to a 9-to-5 job.”

And I was like… when he said the extent of her injuries—because I know your brain injury could have been a lot worse—but I guess it still… that was hard.

That was hard.

And I fell out, and I think I was kind of in a bad place.

And I was busy.

And then I just recently got—I went to the last caregiver meeting. And it felt so good.

Yes. Because I texted her during it. And she said, “I’m in my caregiver’s Zoom.”

And what did I do? Respect that.

So rare that you do, but that you respect. Yeah.

That you give me grace for.

Yeah, that I give you grace for.

Why—I just texted you. I didn’t call you.

You did not answer her call.

No, no, no. I texted you.

Yeah. Yeah. I believe it was something funny as well.

Well, thank you for making the cross-country trip to do this episode.

And last episode—but last episode was about us mainly. Well, no, it was about just for the families.

The family—just how horrific it was. The families and just the family perspective.

But this episode was really a tribute for all caregivers of brain injury.

I hope so.

So I really hope this helps someone. I really hope it resonates or validates someone because that’s fucking help. Being validated is everything.

I have to tell you, when I go on that monthly Zoom, it’s just the validation. It’s like, okay.

And it’s talking to people who know what I’m going through.

Yeah. Because my friends can listen to me. My family can listen to me. They don’t get it.

Yeah. No, they don’t get it.

It’s like—and then we need to wrap up.

Everybody says, “Yeah, I’m sorry.”

Everybody’s like, “Oh, I get it. She’s doing great. She’s doing great. You should be just—” and I’m like, yeah…

No.

But when Kat Prescott was here when we recorded, some of the feedback I got was that I talked over her.

And me and Kat—we were friends—and we think the episode was fine.

And part of the reason why is it is two girls who basically on the same timeline had very identical experiences, and we don’t live in the same place and we don’t get to see each other often.

So when we finally are able to talk to each other, it’s this surge of validation that we don’t—that we basically don’t get. And we only get this when we speak.

So when we talk, it’s this really funny—

So me talking over her was like: no, this was two girls on a very—our accidents were a month apart.

These are two girls who had very similar experiences, are also young women, were pursuing the same thing around the same age, who had this happen to them.

Right, right.

And we were both just so excited to be validated.

Well, do you remember the first time you went to LoveYourBrain what you said to me when you came home? It was just validation.

But it was something more than that.

You said, “I was able to explain myself. I was able to take my mask off.”

Yeah.

“I had five days of taking off my mask.”

That hit home for me—that you feel this need to walk around with a mask.

Yeah.

So being with people—it is validation. You can be you. They get you. They understand it.

Yeah. You’re less nervous. You’re less nervous.

Yeah, I think I was so worried about crying the last one.

Yeah. It was just—you know—I don’t know why, but I didn’t guess. I don’t know why.

Because she cries all the time.

I do. You know what is my friends… I cry all the time.

And I’m like, you haven’t met my mom. Like, you haven’t met my mom.

So true.

But thank you for having me.

Thank you for making the trip out here. I love you.

Love you too.

Yeah. Thank you to all my listeners. Hope someone out there listens to this 27 times.

Uh, it’s such a pain in my butt.

But this has been the best.

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I want to go eat some food.

You want to go eat some food?

Yes, I do.

Love you, babe. I’m hungry.

Win most, lose some.

Win a better relationship with my mom.

Loss: several brain cells.

Love you, baby.

Love you.

Win most, lose some.

Thank you.