The aftermath of a brain injury often includes a deep sense of loss, grief and fear. These feelings may surface soon after the injury or may not surface for some time.
Life has changed. Things feel different. What once was easy and uncomplicated might now require a great deal of focus, additional time, and may take a heavy toll on physical, cognitive and emotional energy.
The journey of loss and grief is unique yet common for individuals with a brain injury. It is a difficult, though necessary, step to renewed hope and dreams.
The questions become:
How do I begin to grieve the loss that I feel?
How do I increase my self-awareness to identify some of the changes that may be occurring?
How do I accept, learn about and plan for who I am today?
“For probably my entire college experience, the theme was just survival. I felt like this piece of paper flapping in the wind. I was just barely getting by every single day, every moment. It was about baby steps, just one little thing at a time.”
“I think one of the most unfortunate things about brain injuries is how hard it is to convince somebody that their injury may impact them hugely in the future.”
“Prior to my injury I would describe myself as social and active, never wanting to sit down or just rest. I would get very little sleep because I wanted to be awake and active. I sleep much more now. It’s something that took me four years to learn from the brain injury, but the more I’ve used the strategy of accepting when I need rest and not pushing myself too far, the better I’ve done.”
“After a TBI you are a different person. You have lost aspects of who you are. You have lost thoughts, you’ve lost concentration, ability to function. Processing this loss and grieving has been something I talk to my therapist about every time. You have to understand that what you lost is like losing a family member—you’ve gone through a significant loss of someone close to you, and that person is you.”
“I absolutely have concerns that my TBI will affect me more down the road. I have concerns that at age 50 I will be like a football player who has been hit in the head numerous times for a career of ten years or something. I’m concerned that I will be more debilitated than I am now. But I try not to look too far into the future so I don’t scare myself, because if I do, I’ll lose sight of what’s important to me now.”
“There’s an aspect of me, when I’m with my partner, that wants to always be my best self, but I know that isn’t always attainable. There is a piece of me that continually compares myself to the past me. So there’s this distinction in my mind between the person that I used to be, without a brain injury, and the person I am now.”
“With my fiancé, I found myself constantly trying to connect with the person I used to be. I felt inadequate because I wasn’t that smart person that I identified with before. It’s not that I’m not smart or capable; it’s just that I can’t do things the same way and I haven’t really figured out how to identify with that yet. And so there was this kind of gap—and I still feel like it’s probably there—but a lot of that is my own gap in the relationship with who I am.”
“I really wanted to go into Air Force Officer Training. But after two years of the brain injury, I realized that it was not very feasible and that physically I couldn’t keep up with the demands. Then I started looking at a degree in computer science instead of mechanical engineering because of the sheer number of jobs done at home.”
“At the time, it wasn’t fun having to shift a major part of my life. I was really upset about the Air Force piece. That had been a goal of mine since I was very small. However, it wasn’t a decision I had to make; it was a decision kind of made for me. I simply was not physically up to the rigors of that lifestyle.”
“Learning to deal with the loss has been one of the more difficult things, but also one of the more insightful things. I used to be a very social person, but I lost some of those social functions. I also lost the heavy drinking piece, the person who said, ‘It’s okay to have one more drink, or it’s okay if I drive.’ I lost that. In retrospect that’s the best thing that could’ve happened to me because I might just be dead instead.”
“My whole life, everything I had ever imagined or worked for was being a veterinarian. Even through my senior year in college, I was certain that I was going to apply to vet school, and I just had the mindset that I can push through this and figure out how to make this work. I think that deep down I knew that maybe going to vet school wasn’t necessarily a good fit, but I didn’t really want to admit that to myself, and I felt like I would be letting down not only myself, but also other people.”
“I actually started my application to vet school, but I could never quite find the motivation to get to that place where I was finishing the application. I never felt good about it. Finally, I was like, ‘Maybe I should just wait a year.’ During that time, I thought to myself, ‘Why am I doing this? Is it because four-year-old me wanted it? Why is she making decisions for 24-year-old me?’ There finally was a piece of me that was able to let that go. When I did, it made room for other dreams to come along. Things I never even realized I might be good at. I had to go through all these experiences to be able to let those things go and create a new dream for myself.”
You are experiencing symptoms that may not be noticeable or apparent to others.
Those around you don’t understand. They may see a physically healthy person.
Loved ones may expect you to be the same person you were prior to your injury.
You wish they could feel what you’re feeling, but they can’t. How can they when they’re not experiencing the challenges you face every day? It’s so frustrating!
The impact of “invisibility” can be psychologically devastating. To others, things may seem normal on the surface, yet a person with a brain injury may be struggling painfully on the inside.
The question becomes: How can I help others understand the various challenges that are part of my daily life, when they may be “invisible” to others?
“Brain injury is a very isolating experience. It’s a big struggle, and the fact that nobody else can see it makes it even worse. You might feel like your brain is bruised, or you don’t feel like yourself, but other people just see you as a normal person, and that cannot be more wrong.”
“It’s not easy trying to explain my injury, especially because it’s invisible. A lot of people in my life don’t even know I have a brain injury, but for teachers and employers—people I work with that it will affect—the best thing I can do is say, ‘Hey, I have a brain injury. It causes lots of different issues. I don’t know what’s going to happen every day. I just need you to trust that I know what’s best for me. I know how I can be most productive.’”
”It doesn’t come easy trying to explain my brain injury, especially because it’s invisible. I can look totally fine and normal some days, and act totally fine and normal, but other days I can’t. Trying to explain that to somebody who doesn’t understand or is unfamiliar with the effects of a brain injury is sometimes near impossible.”
“I do think that, over the years, I have been able to open up in a way that I can express to my parents how hard things are. I think it went from ‘Oh, we kind of see that something’s wrong and you just have to try harder,’ to ‘We understand that this might be more difficult for you.’”
“To help others understand what I’m experiencing, I break it down into very small chunks that people can visualize for themselves, and I start putting those together. That’s been a very easy way to communicate problems and needs. I used this approach a lot with my parents. Like if we were running errands, I would say, ‘Okay now’s the point where I’m pretty exhausted; I need sleep and I’m losing my vision.’ Or when we were in a busy area [such as fast, heavy traffic], I would look to my mom and say, ‘Hey, this is what it’s like in my eyes; they just kind of cut out and no longer focus.’”
“So, the piece of trying to help people understand you: part of it is just accepting that some people will never get it. They might just assume you’re making it up or you’re not actually as tired as you are, when you can do something just fine one day but not the next (sighs). Part of it is realizing you’re never going to meet everyone’s expectations. You’ve got to let go if they don’t understand. Probably they’re not worth being in your life, or you haven’t explained things enough, or it just doesn’t matter.”
“For me, it’s a lot of trying to be really creative as far as how I can make analogies and metaphors that help people understand my experience, and then doing it over and over and over and over again to help them understand it’s not just a one-time thing; I experience [these things] every day.”
You feel so alone, uneasy in your own skin. It feels like no one can really understand you.
Socializing used to be enjoyable, but now it only causes increased fatigue, anxiety and stress.
The pain of feeling disconnected and empty inside can lead to serious depression and an inability to move forward. Feelings of hopelessness may arise when feeling alone and facing challenges that feel overwhelming.
The question becomes: How can I find and maintain healthy connections with others while also taking care of my physical, cognitive and emotional needs?
“On one level, I think all of us want to be understood and have other people relate to us. But on another level, you realize they’ll never fully know you. We’re the only people who can really understand ourselves.”
“I really am very passionate about support systems. I think that, especially with a brain injury, the lack of initiation makes it really hard not to feel isolated. It is really hard to get help for yourself, like counseling and other supportive therapies, and also get your network of people on board. It’s difficult!”
“I’d say social activities have gone down to almost zero. I really don’t hang out with my old friends like I did before the brain injury. I was a different person back then. That person got along great with my friends. I think it was really weird for them to see me just change as a person. They were mostly sport friends, and I couldn’t play sports after the TBI. Especially that following year, I couldn’t go anywhere outside the house. It just led to a disconnection, and ever since then it’s been school over socially hanging out.”
“Having a significant other who is with you every day and cares and loves you, but doesn’t quite understand everything, is so difficult. Even though I explain it fifty times in the best way I can, it still doesn’t click with somebody who doesn’t have a TBI. And several of my friends, they just don’t get it. It’s really hard because you think you can lay it out perfectly, and they’ll say they understand. But the next time something comes up and you say, ‘No, I can’t do that,’ once again they don’t understand. Part of it you chalk up to ignorance, and part you get really angry about and you share your frustrations. Other times you just say, ‘I can’t make this tangible for them, so I’m not going to try. And this is how it is, this is how it’s going to be.’”
“I would say a lot of it for me is learning who is more accepting and who I can turn to when I’m feeling a certain way… just finding people I can connect with.”
“I don’t think you need to be best friends with everybody in the CSU brain injury community (CBIC), but I definitely think it’s amazing to have this community of people that can work with each other and really help bring our issues to light, and also work through them.”
“For years I’ve felt very alone with my injury. I had no one who had similar symptoms. But the CSU Brain Injury Community (CBIC) brought students with brain injuries together to share our resources and have a group of people with similar issues to talk to. It’s amazing how much less isolated I feel now that I know other people are going through the same things. If I have an issue I know I can discuss it with them.”
“With CBIC helping me, I feel I’m not alone and crazy with this. This is actually really happening, happening to other people as well. Through the process of acceptance, it makes it easier to talk about.”
“When I heard about CBIC, I was ecstatic ’cause it’s a lot of shit you have to deal with, and a lot of stuff that you’re completely unfamiliar with. But meeting a group of other people who are going through similar things at a similar point in their life, I was elated. It was awesome! Just to hear it was even available was extraordinary.”
“It’s been very, very helpful to have a sense of community and be able to go to a group of people who deal with the same stuff and laugh at it. When you try to make a joke out of your problems to people who don’t understand brain injury, they don’t understand the comedy of it. When you’re with other people who do understand, you’re at ease with it and can feel more comfortable in your own skin. You’re not putting on a show for anyone, because everybody is dealing with the same problems you are or at least very similar. It’s pretty cool.”
Imagine waking up each day and wondering if you will be physically, mentally or emotionally able to make it through the day. How can you depend on yourself when it feels like you have little control over how your brain and body will function?
This unpredictability is difficult for those without a brain injury to understand. Emotional, physical, cognitive and social functioning can all vary greatly from day to day with seemingly no reason. It can feel like jumping from a high step with your eyes closed, not knowing how far it is to the next step, or even if there is solid ground beneath you.
The question becomes: How do I cope with the unpredictability of brain function that varies from day to day?
“Almost everyone living with a brain injury talks about not knowing what the day is going to look like, having that variability in your life. That is probably the most frustrating part. I think that’s why a lot of people with brain injuries wish they had some other disability or issue.”
“It’s a piece that is extremely hard to convey to other people. Like, planning this wedding: how do I tell my fiancé that I think a particular plan is a good one? It might be a really, really, terrible plan! And I don’t really know why it might be terrible—like a migraine, stomach pain, fatigue. There’s a host of things that a brain injury can propagate, and that’s a real issue. Looking forward, like even planning trips, causes a lot of anxiety because you never know. A week vacation might be great, but is it going to be so much stress that it requires a three-week recovery?”
“Some days are better and some days are worse. The predictability of what’s going to happen is very low. One day I could do a full day of school, hang out with friends, and be fine. A different day, I may be awake for two hours and then have to go back to sleep. Every day will be different!”
“Every day I have a “Plan B” in case I wake up and just physically can’t do anything. I have to plan the day before, sometimes the week before. It took me a few years to come up with that strategy.”
“You might feel stupid today, but two weeks from now you might be like, ‘I don’t, I feel normal again. What the hell?’ And then two weeks later you might be like, ‘I’m terrible again!’ It’s really hard because you find yourself in a new scenario almost every day. For instance, last week I worked three half-days. They were really light days, super easy, but come the end of my work week, I was exhausted. I slept all the time and I was just mentally and physically drained, and it didn’t make any sense. This week, I worked my days and I feel totally fine.”
“The variability is really hard!”
“Trying to communicate that you have an ever-changing list of issues is really a challenge. If you don’t list everything on the first shot, people are not going to a) understand you, or b) believe you, in some cases.”
“How do I take care of myself when all the tools I’ve used in the past don’t work? It takes a lot of adaptation, for me anyway, and also creativity, to be willing to just stick through whatever situation I might be going through. And that’s another piece that’s extremely hard to convey to other people.”
“I think that every problem someone might face has a level of uncertainty. But I’ve always felt it would be easier to be missing a leg, because at least I would clearly understand the limitations of my condition. There is this frustration where you never know how your brain injury is going to impact something. Not only do you not know how it will impact something, but it’s never the same!”
“If I start to lose my vision, I’ve got about a half hour before I’m pretty out of luck. So I know I have to get somewhere [dark and quiet], or at least get to someone who can help me, within a half hour. You’ve got to have a step-by-step plan in case stuff goes bad, which it does quite often.”
“One of the things I deal with is lack of control about a variety of things—anger, eating too much or not eating at all. It is really difficult to communicate just what your problem is because your problem is ever-changing.”
“The unpredictability makes it difficult to do things like schedule more than a week out, because come Tuesday of that week, you might feel totally fine, but come Wednesday—(laughs) just one day later!—you’re like, ‘I can’t do half of the things I said.’”
(Update, 11 months after interview) “Time helps some. I’ve had more practice now figuring some things out. For example, I may still need extra time to take a course exam, but I’m better able to read, interpret, comprehend and correctly answer questions. I also have more patience and don’t respond so impulsively!”