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 New neuro-pathways after a brain tumor. My thoughts and experiences. |
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When someone wants to know how I am doing? My reply is, “Seven Degrees Left of Center”. Following a severe seizure, an MRI revealed a tumor the size of a lime in my brain. September 2019 is when this occurred. Situated one inch left and seven degrees from the center of my brain, the tumor touched the hippocampus. The part of the brain that handles language and memory. Each day feels brand new; my recollection of the previous day is minimal. I’m learning to adapt. |
Overwhelmed? Yep, that is the word I am looking for to describe the past week. Thank you, Schnujo's Giving Away GPs  , for the encouragement and unexpected plug, and thank you for all the new likes and followers.Before my brain tumor, I wished I could be a writer. After the events this week, the quote, "Be careful what you wish for; it might come true, " or some variation of similar combined words came to mind. I wondered, have I finally succeeded in being named Writer? I have 30 years of notebooks containing aged yellow paper. The pages contain hours of pen and pencil marks. However, I have always needed clarification on what being named Writer meant. I equated becoming a Writer to becoming a Knight. First, a King (Publisher, Editor, Printer) or another Knight (Published author, Poet, Reporter) would tap my shoulder with a quill. Next, they needed to exchange some obligatory words ending, "Henceforth and forever you are a Writer of Words, Teller of Tales, and Thinker of Big Thoughts." After surviving a brain tumor and associated misadventures, I realized I had been a writer all along. Thanks to mild brain damage. I am getting a new opportunity to learn what being a writer means. I hope, with practice, I become a better Writer of Words. Today, I am grateful I can thread together these few. The courage to write down your thoughts is being a Thinker of Big Thoughts. All the other things, grammar, spelling, plot twists, characters, etc., are tools to become a Teller of Tales. I started writing again about 18 months ago. The scale my speech therapist used estimated a 2nd-grade intellect. I have improved, but I am not an "A" student. However, I am a writer. It turns out I have always been a writer. The proof? I write good things, bad or ugly, I write. Before this, I worked and waited to be granted a Writerhood. Not now. I write because I am a writer, not because of a wish. If you pen your own words, you are a writer, too, just in case no one has told you. |
| Two years ago, I woke up in an intensive care room. The room was cold and dark. I cannot say I was comfortable. However, I was not in any pain. That changed when I attempted to move. After that, I either passed out or went back to sleep. The same, but not. I woke again, and it was still dark. Maybe, I had just blinked my eyes. I don't know. I started to count the beeps from a machine, not ticks like a clock. But, they did provide a gauge acknowledging time moving. Time, what time is it? What day is it? Why am I here? Who am I? Panic! I felt vulnerable and violated. The beeping got faster, and some green lights changed to red. I blinked! No, I passed out. When I opened my eyes again, there was light and voices, "Wah wah wah wah?" a light shining into my eyes, it hurt. Femail voice, "Wah wah wah wah wah?" I blinked. Male again, "Wah wah wah?" Femail voice, "Wah wah wah wah wah. Wah wah. Wah wah wah wah?" I cried. My field of vision was limited because I couldn't move my head. I felt a hand firmly gripping my forearm. Male, "Wah wah wah, okay, wah wah." That is all I remember from September 25th, 2020. I am trying to remember details from the following few days. My head hurt. The bed rolled through hallways. My head hurt. Road the amusement ride called MRI. My head hurt. More rides in a wheelchair. My head hurt. And, "Wah wah wah, ah, wah wah?" or "Okay, wah wah sir wah move wah wah." I do not remember the exact sequence of events, but here are two highlights after my brain replaced "wah whas" with actual words. My oldest daughter helped me eat my first meal. I had not said anything yet, so I had only used hand jesters or teary eyes to communicate. The hoses, wires, cables, and other entanglements made that problematic. Susan is a prayer worrier, so I wanted to ask her to say a prayer. With great effort, I tried my best to get the words I was thinking of verbalizing. The best I could say was, "Sshhhit?!" I could not remember my wife's name. Yet I knew who she was, so I managed to call her "Precious." The doctor laughed out loud and replied, "Okay, ladies. He will be fine." We all enjoyed a good laugh—maybe we cried. No, it was a laugh. But, really, we happily cried. |
| Unfortunately, the past couple of weeks has been primarily negative emotions. Talking about recovering from a brain injury is difficult. There is an ebb and flow of emotions, progress, memories, and frustrations. Like a boat in choppy seas, I started taking on water. September 2020 is two years past, and my scar hurts. I am looking at a picture, believing I should know who this is. Because the image is with my other grandkids, I remember she is my granddaughter, but what is her name? My days have settled into a repetitive process of predictable events. Each day starts the same. I try to remember what is missing. But first, I look at pictures of my grandkids and recite their names. Then, on days like today, I have to look at the name on the back. It takes effort to remember what you do not see every day. I see my wife every day. She is patient and kind and loving. But, she will also look at me, turning her head slightly to the right. Sometimes she ask, "What?" I know my writing isn't strong, but the gibberish I speak can be nonsense. Luckily, we both have a good sense of humor and get to laugh at the missed words. If only everyone could be as kind. First dates do start to ware on us, though. My scar is seething today. We have learned that is a sign my verbal communication will struggle. Hopefully, it will be extra entertaining. Either way, I need to get ready for my date. |
| The past couple of weeks were more difficult than I anticipated. Two years have passed since the brain tumor introduced itself. Two years of tears, struggle, determination and prayer. In the scheme of this, two years isn't that long a time. But, in my healing process, two years is a lifetime. I think some lessons should have been learned by now. Yet, I sit as confused as ever. Questioning, is my existence recreated or simply extended? So, I offer this today, "Carry a light when soul searching." In the hidden cells of the brain live monsters long ago locked in dungeons. They will appear as regret, shame, and self-pity, to name a few. Since my last entry on this blog, self petty nearly overcame my thoughts. I no longer have a career. Verbal communication with family and friends is difficult. The written word is sometimes insufficient for those that love you the most. Accepting a new normal is a bitter pill. Once taken, it dissolves quickly in the mouth, distributing an awful taste. Drink, food, or sweets do nothing to reduce its claim to the pallet. These monsters are not easily slane. Why should they be? However, defeating the beasts must be possible; this is my hope. It is the light I turned on. I needed to view these monsters. In doing so, I remembered something my Grandfather said. A vivid memory, though, years have passed since his death. This memory became as real as if it had just happened. He said, "Always practice courage. One day you will need to be brave." I am moving forward with light and courage by returning to this blog today. I have to admit my fingers are trembling more than typing. My Grandfather neglected to mention fear is the fuel for courage. My tank is full. |
| I have found great empathy for infants. I did not understand when my children were babies and cried for no apparent reason. More importantly, I couldn't sympathize. The day I came home from the hospital, including the following weeks. I believe I experienced something similar to a newborn, brain sensory overload. A baby is encoding input for the first time. I was struggling to match broken codes. A baby has new blank storage designed to accept vast amounts of information. I had vast amounts of information fragmented and used space misfiring as often as not. My brain was going through a defragmenting routine. In the first 30 days of recovery, crying was my only output resource. Crying isn't always sad. I could happy cry too. So, I have great empathy for an infant that cannot express what is overstimulating a brain's pathway. My wife needed time to run errands and a break of her own. So, on my first day home, my 72-year-old mother babysit. She was sitting on the couch with me, holding my left hand, attempting a conversation. My brain, however, could not cooperate. I met myself as an infant, afraid and confused. Yet, also safe and comfortable, and most importantly, not alone. Sadly I was unable to participate in a conversation. Unable to express defined emotion except for a few tears. She stopped talking. She just sat with me. I have no concept of how much time passed. I am grateful mom is still here for me. I became like the babe that stopped fussing. The brain has to learn, no matter how much someone loves you. So often, there is nothing they can do to help. They can only be there for you. And, it is okay if they cry, too. |
| The goal of this BLOG is not explicitly defined. A short sentence is; Recovering from a brain injury. However, the recovery part is only the tip of the iceberg. A cliche, I know, but appropriate. Gray Scale means; Experiencing my world without emotional impact. I visited a dark place in my mind. The place where knowing oneself is happy yet not feeling the happiness emotionally. What a horrible thing to say about one's self. In this basement of thought, there is little light. No color. The sounds are a continuing hum created by medications. It vibrates in my ears with no change in tone or intensity. The sound is also gray. The gray also makes it difficult to move like damp sand holding my feet in a vacuum. No color. No sound. No movement. Stranded in a moment that will not pass. Sensory deprivation without being encased in a lab or dungeon. So what makes me write this? Blue! Yes, the color appeared this morning. No doctor or psychologist can explain precisely how the brain works. I sure can't. After several days I take a step. The distance isn't as critical as the direction. Forward, one step. |
| I didn't get a chance to sit down and write this weekend. Instead, my daughter's family visited and helped with some chores. My 13-year-old grandson, KP, helped me trim some tree limbs and fix a gate to the backyard. He is at the age where knowing and understanding are not the same. An awesome age, if you asked me. My older grandson helped me build the fence and gate 15 years ago. He was only two at the time. His help was more of standing there or playing in the dirt. However, my brain replayed the memory as if it was happening while the present time ticked normally. KP asked me, "Are you time traveling?" He told me he could tell because I talk slower. Apparently, according to him, I also "look through" people when it happens. But, he assured me that it didn't scare him. He was just curious if I knew I was time traveling. I do know when it is happening. However, it isn't time traveling. I explained it is more like a notion of time. I know I am not really somewhere, somewhen else. But, I experience the emotions and actions that go with the event as if they are happening again. And, the current time is passing as well. Then he asked, "When your eyes are watery, like you are going to cry. Is that a sad memory?" Sometimes, but not this time. So, I told him the story of me and Jordan building the fence. A happy notion of time. With a happy tear to go with it. |
| The past week I binged watched the HBO series, Game of Thrones. I remember watching it when it first aired. However, I have forgotten the storylines. So, it was like watching it for the first time. The GoT series is an example of knowing I have seen or done something but not remembering the event's details. Try to imagine sitting on a piano bench and placing your hands on the keys. Then, without thought, you start playing a melody. You have no memory of the lessons or hours of practice committed to learning how to play. Yet, you can play anyway. Either way, this is the experience I have with books, movies, and real-life events. Fiction in film and print is easier to align because I'm getting a do-over. However, the actual life events are much more challenging. One of the problematic facts about memory is the ability to alter actual events, blurring them with fiction. As a result, the stories I tell are, well, embellished. I have to stay away from binge-watching in the future. I had forgotten how disappointed I was with the last two seasons of GoT. What I did catch in the early seasons, I am going to explore in the books. Sadly, I haven't read them yet. I hope to find the antagonist viruses the protagonist's storylines. GoT might be a good study on how a character is the villain, hero, sidekick, mentor, or no one in the background, without losing the character's core within the storylines. Speaking of core, I found personal notebooks written in the past years stored in a box. Stories I started years ago. They are time capsules I am afraid to open. Afraid, mixing fantasy and reality even more. Among the books is two small pocket-size notebooks. My wife tells me I would write a sentence or two every so often. Not that I remember, but the handwriting is mine. The first entry in the first notebook reads, "Always take a light when soul searching." How spooky is that? How did I know I would embark on this journey years ago? As I read the entries, what will I find? The following entry is, "Temptation is often granted." *chills* Nope, I cannot play piano, I do not have one in my home, so I am making an assumption I didn't play before. But maybe, I need to sit at one and try? Who knows? |
| Writing a blog is supposed to be therapeutic. At least, that is what my therapist says. However, communicating is an art form, difficult to learn, and relearning feels impossible. Not to mention the pure fear and embarrassment in sharing the experiences. In the past two weeks, I have seen three doctors and two therapists, tallying eight office visits and 1360 miles. My schedule next week is less hectic, thankfully. So, what did I learn this week? Nothing new, unfortunately. Food left out of the refrigerator will ruin. Forgetting to put food back in the fridge will make my wife understandably angry yet lovingly forgiving. I feel more like a child in need of constant supervision. After 18 months in recovery, explaining "I forgot." is wearing thin for both of us. The disappointments caused by short-term memory loss are adding up. My inability to recall details is frustrating. It is also embarrassing when it creates problems affecting others. My oldest grandson visited for five days, helping with chores. I gave him $100 for gas and a snack for the drive home. The part I forgot to tell him was to split the change with his sister for church camp. Without going into details, he had to return a purchased item so they could have money for camp. The event with my son-in-law was more costly. I lent him a camper trailer for a family vacation at the lake. I told him to use 10 to 12 pounds of dry ice to precool the refrigerator. I did not realize I said "pounds" instead of "ounces." He did not question me and purchased 12 pounds of expensive dry ice. Dry ice is unreturnable, by the way. My daughter did not enjoy increasing the budget for the trip. When the brain fails, the results are embarrassing and discouraging. I disappointed and embarrassed my grandson. I created an issue between my daughter and her husband. Saying, "I'm sorry," is also getting very old. |
| I am not sure where I got the phrase. I am almost positive it is not original. However, it seems to fit my current daily experiences. I am expanding on the word Aphasia and adding Lethologica and Lethonomia. Lethologica is the inability to remember the right word. Lethonomia, by contrast, is the inability to remember the right name. Both terms derive from the river Lethe in Greek mythology. People who drank from the "river of unmindfulness" in Hades forgot everything. Lethologica adds in "logos" (meaning "word"), whereas lethonomia adds in "nom" (meaning "name"). ref: https://wordfinder.yourdictionary.com Another piece to the puzzle is the hippocampus. What Is the Hippocampus? The hippocampus is a small part of the brain located in the medial temporal lobes (MTL), under the cerebral cortex. The hippocampus is an essential part of the brain's limbic system, a group of brain structures in the cerebral cortex responsible for behavioral and emotional responses. Hippocampal function plays a critical role in learning, emotional responses, and memory formation and storage. The human brain contains two hippocampi, one on each side of the brain, located a few inches above each ear. The term "hippocampus"—derived from the Greek words hippo (meaning horse) and kampos (meaning monster)—translates to "seahorse," a reference to its shape. ref: https://www.masterclass.com/articles/hippocampus-explained#what-is-the-hippocamp... Each day I they struggle with a reasonable suspicion I am wrong or misunderstood without losing their trust in plausible deniability. I love my family and their patience. We are still learning: Yes, we talked about this yesterday, the day before, or maybe a week ago. Yes, we will have to discuss it again as if it never happened. |
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Are you taking fish oil? It’s supposed to help the brain.
), I also have a brain injury, so I had completely forgotten about your blog. 
I'm SUPER glad you tagged me or I might never have read another post again. 
So, definitely use that thing that asks if you want to announce that you added a blog post. It will prompt me to read it. 
The words might not come as easily, but the talent is still there. 
Anyone can nominate stuff, so if you find things around WdC that you love, feel free to nominate them through "
That's amazing! I'm so happy for you because I'm sure that initial result was devastating! 
