According to some sites, I do not have a TBI but rather an ABI. I don’t see the point in splitting hairs. Maybe my stroke was an ABI but the surgery that resulted from the hemorrhage was a TBI. I don’t need to look it up to know because every neurologist and neurosurgeon I have spoken to has referred to my craniotomy as a traumatic brain injury. Anything that touches the brain is traumatic to the brain so yeah, having a man dig around in there for 13 hours, even on a microscopic level, is traumatic for the brain.
It’s not easy to live with any type of brain injury regardless of the cause, the magnitude of the injury, or the size of the damaged area. Everyone that survives a brain injury experiences similar moments, similar emotions, similar losses both internally personal and exteriorly. There’s a lot of learning that comes with being a survivor. There’s a lot of responsibility; responsibility for personal accountability, responsibility to evolve into this new person you are forced to become and responsibility to adapt to the environments that no longer suit you or your needs. It can be hard, it’s definitely challenging but it’s also eye-opening. I would like to share some of the main things I have experienced with some added details I’ve gathered from people I’ve met along the way in the last (almost) four years. These are not in any particular order since I’m shooting off the top of my head here.
There is more to confusion than having trouble with directions or numbers. However, both are problems and can become so problematic that you can no longer be productive in a work environment. It’s one of those invisible disabilities that most survivors experience on some level. For me, it happens when there’s change. When websites change their layout; or when a brand changes its label or a store rearranges the shelves in a department. When I go to a website I’ve never visited before I get lost easily. The other day, for instance, I needed to order a new debit card and wanted to change the design of it. I knew it was possible but because there was no direct link to personalize like before the update years ago, I needed to do the instant chat for help getting around. Right click, open in new tab, has become reflexive for me anytime I clink a link. Sometimes I have to go back and retrace steps from the beginning so I need that original tab to remain open for that purpose. Then there’s so many tabs I get confused by them all and forget which one was the one I was actually looking for!
- Easily distracted/Forgetful
This one goes in line with confusion because they can have the tendency to bleed into one another. It’s one thing to walk into a room and forget why you went there but it’s another to walk into a room on a mission, reach your destination and then blank out. I can’t tell you how many times I’ve stared at the fridge because I knew, just knew, whatever I went into the kitchen for somehow involved the fridge. You open the door, check the freezer, dig in the drawers hoping to find a clue to kick-start your brain again but to no avail. You leave the room and come back to nothing. Or you head to the freezer to take meat out for dinner and notice a piece of trash on your way there so you pick it up. It’s a minor detour to the garbage. You remember the meat as the trash is floating down into the can; you head to the freezer and there you are, blanked out, lost. Sometimes you go in the fridge (because it’s close to the freezer) and you find a snack and think that was what you were looking for (because it’s also food) only to remember the moment you sat down you were supposed to take the meat out. Sometimes, you don’t remember until the moment you are supposed to be cooking dinner and you become very angry and disappointed in yourself. Which, I guess could lead us into the range of new emotions you may experience post brain injury.
Most people would think rage is a strong word but after surviving a brain injury, you quickly discover exactly what rage feels like. Some of us only experience it at the beginning. Others have to learn to deal with it for the rest of their lives. Rage is not always violent but it’s never healthy. At times when I realize I never took the meat out of the freezer after 4 attempts to do so, I become so engulfed in this red and black cloud of anger that burns and somehow tickles deep in my chest. I tell myself awful things to hurt myself like how stupid I am, how I should just sit on the couch all day and night instead of trying to live some sort of “normal” life and messing everything up. What gets me through is how I imagine my kids see me. Directly after the stroke and the following year, I couldn’t see my kids through my rage. I didn’t care what they heard, what they saw or how they saw me. I didn’t care how they would interpret my childish behavior or how it would stay with them, ultimately affecting their own personalities, character and how they will learn to react and respond to frustration and difficult situations. It sucks and I have deep empathy for those that go through this with no one or nothing there to help initiate that need to control this negative residual effect from a brain injury. It can be harmful and is very unhealthy to both the survivor and those around them.
These three, this trinity of absolute internal torture is probably the most common and thickest thread that weaves all of us survivors together. You could say you didn’t lose anything but you will most likely still grieve over some sort of loss. From the survivors I met and groups I’ve participated in, everyone has experienced loss as a direct result of their brain injury. Some only lose friends and that can be hard to deal with. You might not realize it but when you accept someone into your life, you immediately have a set of expectations that are developed from how you perceive their character. Take my friend Elly, for instance. Super sweet woman, very compassionate and intensely sensitive to others’ needs. I never knew how I thought of her until she bailed on me while I was in rehab trying to learn to walk again. I was immensely disappointed. I knew if the roles were reversed I would not have visited her but that’s because of the type of person I have always been and people would expect that of me. It’s not that I’m afraid to see you in pain. It’s just awkward and uncomfortable because I have nothing to say that will help you feel better or confident or positive. But, Elly, she wasn’t supposed to be like that. She was supposed to be better than me. Losing her as a friend was a major loss and a great disappointment.
But some loss we experience post brain injury can be deeper, more harming and less or more obvious. For me it was obvious why I was grieving. I lost my left side. I lost an entire half of myself and every evaluation of my injuries/condition resulted in the same frown and shake of the head. I’m not going to get much better; this damage is permanent. I’ll never forget the images I’ve developed of myself in my deepest moments of despair. Sitting in a wheelchair in my room in rehab, looking out the window at a gray sky with tears on my cheeks and a puddle in my lap. Sitting on a box in a dark closet with a hand on my 5 month bloated belly and cursing a God I’m still unsure exists. Those two moments will forever be with me and for me, they will always represent the true horror I felt that was going to be my life. This was grieving and I had never grieved over anything or anyone before.
I’d say, just my opinion, that the first two years post injury are the worst. You start to discover the lasting effects of your injury and you learn you now have limitations, boundaries and a full range of emotions you need to learn. These things change you inside and out. Your friends and family will all notice the differences about you. They’ll treat you differently, talk to you differently (hopefully not with that annoying and false sympathetic tone that will piss you off every time) and most likely say things to you that will remind you or reveal to you, how much of your original self you have lost. A lot of us grieve over that and that, I would say, is the biggest loss I have experienced; it was a good thing I was already in a prolonged state of grief when this realization came to me. I can learn to do things one-handed, I can learn to take joy in watching my kids do things I can’t do along with them like I had dreamed of doing but how do you actively learn to grow into a new person, leaving the old you behind? I have no answer to this question but it’s nice to know you’re not the only survivor asking this.
Not every survivor, but most of us do, develops anxiety. I know I did. I was always sensitive; couldn’t stand large crowds of people but I found it reasonably easy to overcome and force myself out there. It became a lot easier once I was finished with high school and dealing with people much less judge-y about things like your popularity level. People always annoyed me but through research over the last few years and comparing my finds to my own history, it’s very likely my stroke was not the first time the AVM had caused a brain injury for me. There’s no way to tell, so the anxiety and dislike of people could be natural or a result of something that happened earlier in my life.
It seems that most people have anxiety when it comes to other people. I don’t know what it is about brain injury survivors and dealing with people but it’s something I’ve read and discussed at length with other survivors. I think for me it’s because of how I used to think of people. I judged everyone I saw and never thought to think of why. Why does that person walk funny? Why is that person wearing such funky clothes? Why does that person talk so funny? I always just straight laughed at them or made a scrunched up disgusted face. For me, it’s no wonder I’m afraid of what others will think of me when they see me hobbling in on my cane with my left arm tensely sticking out. Then there’s the fear of falling in public. Or what if I get scared enough to cry like that one time at the circus where I discovered my vertigo was much more severe than I thought? What if there are stairs and no ramp? And then the big one: What if I have another injury? That last one can be really hard to live with. Not everyone is lucky enough to have that risk removed, putting them on the same level of likeliness as the average person.
What I find the most detrimental to anxiety and fear is having a major role player in your life that caters to your anxiety, essentially enabling the reclusive behavior of a person with anxiety. You have to stand against these people, let them know you know they mean well but you need to try to see if you can overcome your anxiety and even ask for their help to give you nudges where you need them.
This one is not as obvious as I think it should be. It’s got to be one of the biggest invisible disabilities that exist. When the brain becomes overloaded, it becomes lethargic and lethargy can lead to fatigue (feelings of nausea, dizziness, difficulty concentrating and unfortunately, even stomach problems like cramping or diarrhea). It comes out of nowhere with little to no warning, there’s no telling how long you may be affected and there’s really no way to tell what all will cause a sudden onset of exhaustion. Personally, I never really understood the relationship between the mind and the body. Sure, we all know there’s a relationship but I never knew how interconnected it all was until my stroke. I knew sometimes you get tired from social gatherings but I didn’t know it could be so mentally taxing to talk to one person in a casual style that you needed to nap for hours to recover. I sometimes find myself so tired at the least convenient moments that I think the fear of becoming overwhelmingly tired in public keeps me home more than my general anxiety does. I rarely visit my in-laws because the drive over there tires me out. They are adults, therefore, they have adult conversations which means I have to keep up with the conversation at all times and that wears me out. It’s not all about physical endurance or stamina. Sure, walking a lot in one day will tire me out but I can sit down and still hold a conversation with Kasper. Get me to have a one hour conversation with my in-laws and I have Whitaker eye. I can’t keep my head up or stop my brain from shutting down. I really hate that people find this difficult to comprehend. People that don’t go through it don’t understand how difficult it is to live with basically chronic lethargy. They think you are exaggerating or using this as an excuse to be lazy. It’s very stressful. No one that has to deal with lethargy wants to debate someone who doesn’t understand just how real an issue this can be. I love to sleep but do you think I really want to suddenly lean over on the couch and sleep awkwardly like that for an hour or two?
Lethargy developed from being social is very common, especially around holidays where survivors often find people surrounding them. It’s very important for a survivor to learn to state their boundaries and to learn to speak out. This brings us to:
This is hard to learn post injury. It’s hard for anyone to learn at all but personal accountability is something that will help people understand you. When you are in control of everything “wrong” with you even when it’s something you can’t control, people will be more receptive to you and your needs. I have found that if I am blunt and honest people tend to try a little more to understand. Don’t pussy foot around the truth about you. If you are in a conversation and you drift off because you can’t focus easily or whatever the person is saying is annoying, interrupt them and say it. Say, “I’m sorry but this is too complex for me at this time and I need to break” or “I don’t have the energy to talk right now.” Whatever it is, just say it. If it’s rude, try your best to find the least rude way to say it. Otherwise, people will never understand you, make room for you or try a little harder to remain your equal (as in, won’t belittle you).
As you discover limitations, boundaries and all the things that changed or are changing about you, it’s your responsibility to absorb it and evolve with it instead of burying it beneath the old you you keep trying to resurrect. People speak of environment as if it is only something we can be in but I think we are our own environment, our bodies are an environment that we reside within. When our bodies change, we must change with it. If you become lethargic around large crowds it doesn’t mean you have to stop going out but it does mean you need to learn how much you can take before it becomes to be too much. I guess it’s kind of like learning your tolerance for alcohol. Actually, that’s exactly what it’s like. If you don’t like that you have such a short tolerance for it, you build up that tolerance by drinking more. Yeah, it’s true whether it’s for cultural, social or another strange reason. I’m not advocating for getting blackout drunk or pushing yourself hard into your former life but what I am saying is that it takes experimenting with your new self and limitations to learn what you can push, if anything at all. How will you know where you have room to grow and improve if you never explore those dark corners? Being around people a little more often, trying puzzles a little more difficult than you’re used to or challenging yourself during workouts is similar to drinking more to gain more tolerance. You have to take responsibility for this, no one will do it for you; the most anyone can do is encourage and/or guide. You also have to be responsible. Drink responsibly means know your limits, know where you are, where you’re going and how you’re going to get there and back. Unfortunately, some of us have to learn by getting stranded because we didn’t prepare enough, a friend bailed on us or we drank much more than we thought we could handle. Trial and error; learning from mistakes and learning to plan properly are essential developmental stages. Some of us discover we shouldn’t drink, not because we can’t handle it physically but because it wreaks too much havoc on our lives. It’s sad because your friends drink together every Friday night and now you shouldn’t. Taking responsibility is not going out with them anyway and not drinking (because you are at a higher risk of not following through), but being aware of your new differences and not forcing them into the old environment. Sometimes you may need a break or to slow down or to find new friends that can have a glass of wine with dinner instead of 18 shots of tequila and a 3 a.m hotdog; or finding a new avenue to help the transition. There’s nothing wrong with allowing a new personality to develop after a tragedy. It’s taking responsibility for things out of your control and learning to handle them. Friends will always come and go with or without a major injury or change in your life. You can sit and sulk and fight it and be miserable or you can take charge and at least avoid as many rough spots on the road you’re forced on as you can. That is responsibility.
Life after a brain injury is no easy trip. I’m learning more each and every day. I’m sure this won’t be my only long post on these issues because of how much I am always learning and changing still. Not everyone will accept us in our new forms post injury; maybe we are too confusing or too emotional or complex or our road is much longer than they are willing to travel with us. Whatever reason, it’s not enough to let yourself fall back. And like with learning to drink safely and responsibly, sometimes we throw up but we’ll know how to avoid that next time we try to learn about our new selves :)
I hope this post made a little sense to someone.