I used to be a Language Arts teacher, and after my craniotomy, my language regressed almost entirely, so this was a huge change in my life. I went from being capable and successful at teaching the English language, as well as having studied Italian, Spanish, and German, to being unable to communicate in a grocery store as I paid for groceries. A simple, “I’m fine, thanks. How are you?” needed to be studied, practiced, and nervously attempted. I also had a hard time remembering a lot, like why I walked into a room, what I was in the middle of saying, things I had to do. It was a powerless time I felt trapped within myself because my communication and processing skills regressed to…I would guess in the very beginning my skills were similar to a five-year old.
It’s probably difficult to understand what someone with a brain tumor is going through, whether you have one yourself or not, because we’re already individual people, but, additionally, the tumors are in different parts of our brains that control different parts of our minds, bodies, and lives. Different individuals with different tumor sizes and types in different locations within their brains will have different experiences. There is no brain-tumor model, instead it’s like a crazy puzzle to figure out. Some examples of ways brain tumors and/or craniotomies may affect people long-term include balance, mental processing deficiencies, speech, physical changes, and more. I’ll try to give you an idea of its effect on me in varying degrees over my nine plus years.
I have feelings, thoughts, and am aware of my surroundings, but, in the beginning when I couldn’t find a way to communicate them through word loss, I became exceedingly overwhelmed and frustrated. Sometimes things I said came across extremely simplified when they were actually very deep, and sometimes I made a mountain out of a molehill because those were the only words I could think of that came remotely close to what I was trying to say. The problems could come from a memory block, my vocabulary at the time, and sometimes even confusing one word for another with a completely different meaning. Until I was in the literary trenches, I had no idea, even as a former teacher, quite how powerful being able to communicate is, whether with someone else or even within yourself as you strive to process your thoughts and feelings.
Language deficiency also makes it difficult to identify and subsequently deal with what you’re thinking and feeling. The body sends and interprets a signal like, “this is bad or good,” but identifying what made you feel that way, and what the feeling originates from can be confusing without being able to process it yourself with language. Some things in life are much deeper and can be especially difficult to figure out. The body gets a signal, but it’s tough to process your emotions and identify their source when words don’t either come to mind or exist in your current vocabulary. It is a very powerless place to be. I know because I was there. Re-learning and finding the right words promotes one’s ability to process these events and feelings, then move on in life without carrying additional emotional baggage, and, trust me, the work is worth it.
After my surgery, part of my recovery was speech therapy, most of which was looking at flashcards and trying to remember words for things like turtles, helmets, radios… I remember getting very low percentages and feeling even worse about myself. Over the years, talking, reading, music, and television have helped my vocabulary grow, yet I always have room for improvement and still struggle regularly with my immediate vocabulary.
By immediate vocabulary I mean, if I was asked a question or had to talk about something immediately, what would come out? That’s a challenge for me because the correct words, sometimes any words at all, may not come to mind. I’m on the spot and look like I have nothing to say or can’t answer a basic question, which makes me feel trapped, powerless, afraid of what others will think of me. Earlier on, they even made me question myself.
In the beginning, even basic things weren’t easy for me. I actually had to write notes, double-inventory things, as well as repeatedly check my timing on simple things like packing my kids’ lunches. My head had been shaved on one side and I was facially bruised for a while, so between being unable to properly think, remember, and looking so horribly obvious as having had a craniotomy, there was a lot of stress in my life. Still, I prioritized being there and made myself push to stay active in the life I didn’t want to give up.
When I first began writing after the surgery, I often reviewed my work and noticed it either looked wrong or not exactly what I was trying to say. I looked for better words, revised word-orders and sentence structures. I found this to be a helpful improvement in identifying and expressing what I was thinking and feeling. Writing has helped me not only in communication, but also in understanding my own thoughts and feelings better. It probably takes me over ten times as long to write now with all the reviewing and re-writing I have to do, however, as I do this work I am learning and my communication, vocabulary, and processing skills are improving immensely.
Over the years, writing has continued to be one of the best ways I overcome the powerlessness my tumor and word loss caused and improve my communication. When I write, I can think more about what I’m trying to say and look up the words, whether it be with guesses, a thesaurus, or a google question. Sometimes it comes to me naturally if I can give it time. The words are in my head, yet I don’t always have easy or regular access to them, and that’s really hard.
Writing, emailing, and texting are all easier for me than speaking, especially speaking immediately. I strive to speak better too, so I also keep trying, even though it can be frustrating and embarrassing at times. Writing and listening in all their forms are definitely helping me improve my speaking skills, but engaging in a conversation is the best way for me. It puts me on the spot, especially in the areas of word choice and timing. I need to stay up to speed with the conversation, so I push myself to converse even though I know I may have an instantaneous word block or memory freeze. It helps me identify words I need to work on, and if I have a block, I have to decide instantaneously how to react. Sometimes I choose to let the person know the words aren’t coming to mind and sometimes not, depending on the situation. I haven’t had any bad responses but am continuously weighing the variables between pushing myself to advance in memory and communication, being vulnerable, mistakenly framing myself with that identity, and using that challenge as an excuse to stop trying. It’s a lot of math and pressure when, at the same time, I’m trying to come up with the word. Although this work is definitely worth it, there comes a point when I’ve simply had enough and need to stop.
I strongly prefer to improve myself, my communication, and forge better relationships, yet there are times and people that don’t feel safe for me to open up face-to-face. I also don’t need to inform everyone of my health history, so I let a few go, but it still feels like a false impression.. I’ve even let myself look stupid before, which I have no desire to do again, yet when people jump to their own conclusions, a live exposure of more vulnerability doesn’t make my cut. It’s an area I still struggle with. Overall, though, I’ve come an extremely long way, yet still have daily challenges with my memory, language and communication that I actively pursue because I yearn to progress.
My current word order, sentence and paragraph structures, and vocabulary are greatly improved, yet I still have a few struggles. I catch myself saying things backwards, repeating myself, and saying the same concept in multiple ways multiple times. Even being able to put events and feelings into words at all can still be taxing on me occasionally. However, I’ve identified some good ways to deal with these challenges and continue to try, learn, and improve. Though I still have some effects of these, they are significantly smaller and a lot of people don’t even notice.
Through this work, I’ve also strengthened my memory skills a considerable amount, but there are areas I still struggle with. It’s been over nine years, so I’ll likely continue to face challenges in these areas, yet I’m also developing retaining strategies for the ones I prioritize. Proper nouns, especially in medicine and other specialties take work to identify even though I can often describe many of them, even text-book style sometimes. Proper nouns for people and places I didn’t know roughly five years before surgery are likely to be forgotten unless I take notes and repeat them or if I use them frequently enough for them to elevate to mid-term memory. Longer step-by-step instructions without referring to print are often forgotten unless I’m repetitive with them or use another of the memory-builders, such as acronyms. These difficult areas all tend to be shorter-term memories. Multitasking makes them more likely to be forgotten, but it still doesn’t happen all of the time. It would be helpful for me to identify them more specifically so I can continue improving my skills.
Over these nine-plus years of dealing with all of this, I’ve made plenty of mistakes but have been and continue to be motivated to do my best. Having to re-learn so much language and communication skills has been the hardest, most challenging thing I’ve ever done and continue to do because it has a huge effect on one’s overall life and relationships. I’ve always valued language and communication, yet through my experience suffering without the abilities and skills, I’ve recognized an even greater importance of communication. Mistakes still happen but I’m not going to give up. I want this life. I didn’t want the tumor but it was part of my journey so I’ll figure out how to live with it. It’s obviously better than having to die from it, but it’s also pushed me to see things differently which is good. I’m not exactly happy I had this as a challenge, but I see the positivity in the progress and experience, and I’m grateful for that.
As a former Language Arts teacher, I’ve learned a lot more about the value of communication. Zig Ziglar said, “Your understanding of what you read and hear is, to a very large degree, determined by your vocabulary, so improve your vocabulary daily.” I agree and would like to add that you also only know who you are based on your vocabulary. My improvement has been empowering and liberating, so I wish it for everyone, even if you’re already good at it.
Brain tumors are not the only reason people go through language and memory problems similar to mine. If you’re facing similar challenges, I wish you the best and feel free to reach out.
