Brain Injury & What It's Like Living With One
I’ve certainly never shied away from sharing all the struggles I’ve been through since having had brain surgery, and while for the most part I am doing well and thriving in many areas of my life, I still deal with daily struggles that are a sharp reminder of just what I’ve been through over the last 3 years.
When I was diagnosed with hydrocephalus in November of 2018 and had my ventricular peritoneal shunt placed, my brain had been under quite a bit of increased intracranial pressure for an unknown amount of time. This pressure, which is caused by an increase of fluid around the brain causing the ventricles to swell, and puts pressure and stress on the brain resulting in a brain injury. An incident like this is known as an Acquired Brain Injury (ABI). Unlike a Traumatic Brain Injury (TBI) which is caused by blunt trauma or force to the brain from external factors, this is caused by an internal force. From November of 2018 until February of 2020, I suffered a number of additional episodes of hydrocephalus due to changes in my intracranial pressure causing the shunt to not drain enough or drain too much, or because of a bacterial infection causing the shunt to fail and not drain any fluid at all. Each episode is considered an injury or insult to my brain, on top of each invasive surgery to replace the shunt.
While initially after my first surgery to remove the brain tumor, which was the most traumatic of the surgeries, and the first shunt surgery after being diagnosed with hydrocephalus, I did not notice any cognitive issues or long-term side effects from the brain injuries, besides fatigue. Come the summer of 2020, that all changed.
Living with a Brain Injury & Mild-Cognitive Functioning Disorder
At my 6 month evaluation in June of 2020, I had been noticing in the months prior that there were many issues with my brain’s cognitive functioning. I was having issues with my memory, as I struggled to remember words and phrases I once commonly used when conversing with colleagues or customers. I would forget my talk tracks during conversations and would need to make myself more notes and reminders to not forget important tasks that needed to be completed. I also noticed that simple tasks seemed to take me a lot longer, and things just did not come as easily to me as they once did. My neuro-oncologist and I decided to pursue a neuropsychological evaluation to get a baseline of my brain’s cognitive functioning. In August of 2020, I went through roughly four hours of intense cognitive testing and a neuro-psych interview. When I received the results, many of my concerns were confirmed. While overall many aspects of my brain’s cognitive functioning were still intact and performing at normal, above normal, or even high normal levels, there were some areas that were impacted, particularly in the area of working memory where I performed below average and processing speed - specifically around simple tasks.
While this was something I was now going to have to learn to cope with, it was also a relief. I no longer felt crazy and I had validation that something was not right and that it wasn’t all in my head or just me being a perfectionist.
Living with a brain injury and cognitive functioning disorder is really hard to explain. It’s hard to explain because it’s also hard for everyone to see from the outside looking in. When I talk about my brain injury or the fact that I have had brain surgery most people tell me they would have never known, I don’t display it or I hide it well. I, of course, try to hide it because I don’t want my brain injury to define me as a person, but also not everyone’s brain injury looks the same or displays the same and not everyone will have the same issues. Many of the issues I am about to explain, very easily could be fluffed off as a sign of aging or something that “everyone deals with” at first glance, but they are not the same thing or something that at my age I should be dealing with. The easiest way I can put it is that some days my brain and my mind feels like scrambled eggs while other days it feels OK. My thoughts get easily jumbled up inside my head, I am often finding myself double or triple checking what I am doing when I am working quickly because I can easily forget names, facts, information, etc. and it takes longer for me to absorb any information I might be reading. There is also a level of constant self-doubt that you deal with when you don’t trust what is going on in your own head. However, there is no real way to train your mind to change that, you can’t just “calm down” you can’t just “take a deep breath and relax”. I find that even as I type or write, I will often make mistakes such as switching the order words should be typed around, write the wrong conjunction or use the wrong verb, etc. It’s easy to do and until I reread something or allow spell-check and grammar check to correct me, I don’t realize it’s happening.
I often find that my brain injury really shows itself when I am talking. I have always been a fast talker and my brain and mouth used to work at the same speed. Now, I often find myself knowing what I want to say but not being able to find the words to say it or I will run through multiple words that don’t fit until the right when finally pops into my mind. It makes verbal conversations much harder for me now than they were before, along with forgetting my talk track and memory as to what it is we were talking about. While from the outside looking in, most people are not going to notice this or recognize that it’s happening, it’s the internal processing and frustration of knowing it’s happening for me and the mental energy it takes out of me to work through this every day, that makes living with a brain injury hard, but also hard for those on the outside looking in to understand.
Beyond the cognitive functioning issues, living with a brain injury also means that I am living with a different level of physical, mental, and emotional exhaustion. I am so much more easily drained by things that really would not take any energy out of someone without a brain injury. Emotionally, I tend to cry….A LOT. I hate that, I used to maintain a very stone-cold exterior in many settings, particularly professional settings, to hide my emotions. Now, when I get easily overwhelmed, or when I’m in a very confrontational situation, I get easily frazzled, stressed, and feel myself wanting to cry. I can do everything in my power to not cry, but, it’s like my whole system shuts down and I cannot stop it. It’s a pretty demeaning situation and leaves me belittling myself often because I am not in control of myself or my external composure. I also find that I am triggered more by memories, or little things that remind me of important moments or people in my life or remind me of the past events that I have been through. Overall, I am a far more emotional person and have a harder time handling or coping with my emotions than before.
Physically, I am just exhausted all the time. I used to be able to go all day running around doing errands or being out with friends or family, etc. Now, I need to take breaks, I get easily overwhelmed when I am in crowded places, and my anxiety spikes. Because of vertigo, and the trauma to the cerebellum in my brain I get light-headed and dizzy easily when having to look around in stores, and usually need to cut trips short when I start to feel unwell. I also just flat-out get tired. Although I’ve been in physical therapy for close to 3 years working on regaining much of my balance and strength that I lost from being bedridden or incapacitated for several months, I still do not have the energy levels, balance, and strength that I once had before. My mental and emotional state also has a huge impact on my physical state as well. The more stressed or frazzled I am, the more tired or worn out I become.
Mentally, burnout comes quicker and I hit neuro-fatigue walls much faster in the day, especially when I am really busy. I have to watch my caffeine intake, I need to ensure I am eating and drinking plenty of water, or that I am getting up to move my body around to keep my brain active, sharp, and awake, and that I take breaks throughout the day when working on the computer to relieve some of the eye strain and brain fatigue I easily get now. But at the end of the day, my tolerance for things on a mental, physical, and emotional level is a lot lower than that of someone without a brain injury and I may be more tired at the end of a regular working day than the average person simply because of this.
Learning to Cope & A Healthier Mindset
Moving forward since my diagnosis of mild-cognitive functioning disorder as a result of a brain injury, my goal is to become a better and more confident version of who I am now. I have learned to accept the fact that I am not going to be the person I was before brain surgery or before the brain injury. I know there are things I did then that I cannot do now, and I have restrictions and limitations. I think many people think I am just afraid to try things or afraid to go back to the things I once used to do, but I know it’s because I am far more in tune with my body and how it reacts to things and knowing how it reacted pre-brain surgery as well, and that my body’s reaction to many things now is more elevated or exasperated than before.
I am also trying to focus on being more confident in my abilities. Last year, I was also diagnosed with mild depression and moderate stress, and anxiety and was referred to a therapist. I’ve been in therapy now for a year and while many people probably think therapists, psychiatrists, psychologists are a joke or for crazy people, I can assure you that is not always the case. I see a specific therapist known as a Cognitive Behavioral Therapist who helps me work through my daily stress and anxiety in order to reduce mental strain but also provides me with tools and resources to cope with the cognitive issues so that I can still feel like a successful person in all aspects of my life.
Despite the struggles, there is a positive outcome to all of this. I am learning to accept the person I am now and I have learned new coping tools and mechanisms to help me through work and my day-to-day life. I have begun to set boundaries and put self-care tools in place to help me maintain my best mental, physical, and emotional state. It’s not easy, and I have days where I do hate where I am now sometimes and hate that I am not the same person that I once was, but I have also learned to accept the new version of me too because I survived something that could have easily taken my whole life away.
However, above all else, the reason for me sharing this is that I want others to know that despite the many obstacles that life may throw at you, you can overcome them, you can be successful, and you can live the life you want. There is a silver lining to every situation, and there is a purpose for the reason we go through the things we go through. Because of my brain tumor and brain injury I started this blog to help others, I discovered a career path that I enjoy and am now in a professional role that is more fulfilling and provides me with a better work/life balance. I started therapy and am taking steps to eliminate my stress and anxiety and better my physical health and my mental health. I may never be one hundred percent again, and I will have good days and bad days, but I have come out the other side of some really tough events over the last 3 years, and more importantly, I’ve come out alive.
So while living with a brain injury isn’t always easy, or easy to explain, it’s taught me a lot about myself and I continue to learn more about myself with each day and obstacle I face.