Wednesday, August 24, 2011

Brain injuries are often called the “invisible injury” because unlike a broken bone, you cannot tell anything is wrong. By looking at Trevor, nobody would ever know what he’s been through. Nobody would know he’s had two traumatic brain injuries and has gone through six brain surgeries. Nobody would know he has the cognitive functioning of a toddler. To me, this is the scariest part. Trevor’s brain injury affects so many different aspects of his life besides the obvious physical struggles.

Until today, it’s been pretty hard to tell whether or not Trevor’s judgment, impulsivity or understanding are affected because his expression is so limited. I was actually in the middle of writing a post trying to explain where Trevor is at cognitively when I took a break to go golfing with Trevor, Payton and our friend Kolby. Just before teeing off, I said to Kolby, “It is so illegal to be letting Trevor drive this golf cart right now but whatever; he’ll be fine.” Boy was I wrong!

I’m pretty sure Trevor intentionally tried to kill our 11-year-old brother, Payton. On the first hole, Payton was walking to his ball when he looked back and saw Trevor directly behind him in the golf cart. Payton jokingly asked, “Trevor, are you trying to run me over?” and then all of the sudden I see Trevor ramming into Payton and Payton falling to the ground. I scream, “Stop, stop, stop!!” and see Trevor deliberately push the gas pedal further to the ground and run Payton over while looking at me, smiling.

Luckily, Payton came out with his entire back scraped up and raw but no broken bones or punctured organs. He was screaming bloody murder with adrenaline, Kolby and I were teared-up in panic and Trevor was sitting there in the driver’s seat of the golf cart like nothing had happened. On the way home, I tried to explain to him over and over again why what he did was wrong but he showed no emotion. He felt no remorse for nearly killing his younger brother and refused to say he was sorry. I kept asking him if he meant to do it and he would just smile, shrug his shoulders and continue looking out the window. When I told him this was a perfect example of why he could never get his driver’s license, he fought to find the words and then yelled “Shut up” with the lisp of a four year old.

I still can’t believe this happened, or remove the image in my head of Trevor smiling while running my little brother over. At this point, I’m not convinced he understands anything: life, sarcasm, jokes, questions, anything. His judgement is a lot more messed up than I thought.

Trevor’s frontal lobe is what took the hardest blow, which is what controls personality and emotional functioning. Clearly the golf cart incident proves that both of these things are a little out-of-whack. He is a stone wall when it comes to emotions. He is serious all the time, and doesn’t seem to get overly mad or happy about anything. He shows no interest in any of the things he was previously interested in, besides TV. He doesn’t want to go do anything; he would rather just “sit there”. Every now and again, he will give me the googly-eyes and laugh, but we’re half-convinced he thinks I’m his girlfriend. About a month ago, Trevor actually tried to kiss me, which has to be the hardest thing for me to take as his sister. While watching comedic movies, he will laugh every once in a while, but it never seems to be during parts that are meant to be funny.

His attention span and patience have both been seriously affected by his brain injury. He can only stand to do anything for 15 minutes tops. He cannot watch an entire TV show, cannot stay at the zoo for long enough to see the giraffes and cannot withstand the 45-minute trek to see the South Haven beach. If my mom doesn’t strap his foot correctly into the pedal of the recumbent bike at the gym, instead of waiting for her to figure it out, he gets mad and heads for the showers. If we go to a coffee shop and I cannot get the internet to work on his iPad, he stands up and walks toward my car.

As some of you know, communication is a huge struggle for Trevor, both verbal and nonverbal. This is because of the damage done to the parietal lobe of his brain. It’s nearly impossible for him to come up with the words to demonstrate his wants and needs. Honestly, he’s practically mute. He never tries to initiate conversation. He only responds when asked questions or prompted, sometimes with appropriate responses and more often not.

Trevor still can’t really read or write. On paper, he can copy most words but not groups of words or full sentences. On Facebook, he will respond to “what’s up?”, “how’s it goin?”, “thinking of you” or anything else with “heyyy.” I think everyone is convinced he’s totally fine because he can write on Facebook, but I’m pretty sure he’s clueless as to what anyone is actually saying. When I ask him if he needs help reading his text messages, he says “no.” When I ask him if he can read them, he also says “no.” Who knows what that means...

It’s common for people with traumatic brain injuries to be very dependent on schedules, and Trevor is no exception. He’s super impulsive and compulsive when it comes to daily routines. He does the weirdest, most meticulous things that make no sense to us, but to him they are completely normal. For instance, in the shower, he squirts a dollop of shampoo on his right leg and then scoops it up with his left arm to rub in his hair. Every time he showers.

Everything takes Trevor much longer than you or me, even the simplest of tasks. Yesterday, on the way home from a coffee shop, my gas gauge was well below “E.” Trevor pointed to my dash, pointed to a gas station on the right and said, “Go!” I told him I would only pull over if he filled my tank up and he agreed. He got out of my car, walked over to the gas pump and inserted my credit card into the receipt dispenser. I got out and pointed to where he was supposed to swipe it and he put it in the wrong way. I told him to turn the card around and it took him another few minutes to get right. Then, I told him to unscrew the gas lid. He walked over and kept touching my rear light, confused as to how to get the lid off. I pointed to where it actually was and he opened the door but forgot to unscrew the lid. He then grabbed the pump and repeatedly touched it to the lid. I told him he had to unscrew the lid first. He put the pump back, unscrewed the lid, stuck the pump in the tank and then looked confused as to why it wasn’t filling up. I told him to press the button and he kept pressing the area where it shows the amount of gallons. I had to show him what button to press, how to hold the lever and how to screw the cap back on... It’s simple things like filling up a gas tank, an errand that we are able to do so thoughtlessly, that prove to be nearly impossible for Trevor.

He also has a hard time figuring out what tools or utensils to use. The other day, he ate an entire bowl of cereal with a fork without realizing anything was wrong. Before his injury (or premorbid as the professionals say), he was a huge fan of condiments. He would dip everything in anything. Now, when he’s eating, he has a really hard time figuring out what to do with sauces. He will dip his steak in his lemonade or eat a mouthful of wasabi and not be fazed whatsoever. Today, at dinner, Trevor pulled himself up to the table and instead of putting his hands on the table, he stuck his hand directly in his mashed potatoes. Instead of using a napkin to clean it up, he just held his hand out confused. Yes, my 23-year-old brother still needs his mom to wipe the food off his hands.

Object identification is another difficult feat for many people with parietal lobe injuries. When doing flashcards with numbers, Trevor kills it. He will count in his head until he gets to the number shown on the card and say it out loud, getting it right 80-90 percent of the time. However, with objects and colors it’s a whole ‘nother story. When holding up a color flashcard, he will usually start with “pink” or whatever color gets stuck (perseverates) in his head, and then fire off a bunch of random colors. He won’t guess it correctly until you trigger the word, saying the first sound or syllable. When holding up a flashcard with an object such as a cat, house or book, he will say the most insanely random words such as “flashlight,” “ABCD,” “Wisconsin,” “spaghetti” or anything that randomly pops into his head. I'm not sure whether to laugh or cry. Although the assortment of words he shoots off is pretty hilarious, it's heartbreaking to see him completely unable to come up with a simple word like "dog."

So there it is. Trevor is a perfect demonstration of the invisible injury. Just because he looks fine doesn’t mean he is. His understanding, judgement, impulsivity, cognitive ability and just about every other aspect of his life are still seriously affected. He’s not the Trevor Rhoda we all know and love, but he’s getting closer and closer. Keep up the prayers, ladies and gents; this battle is not yet over.

Tuesday, August 2, 2011

Six months ago, I woke up to a phone call saying Trevor was being rushed to the hospital. Again. After I thought all this chaos was over. I was told that there was a good chance he wasn’t going to make it and that I should say my goodbyes.

Six months ago, Trevor was taken into emergency surgery where they removed a mass of damaged brain cells and an 11-centimeter chunk from his skull. A newborn baby could fit through the hole in Trevor’s head. He was bloody, sweaty and swollen. His eyes were glued shut and his lips were puffy and lopsided. His entire face was orange from the iodine used during surgery. The left side of his head was completely shaven with about 50 staples in a curve around his ear, looking just like a baseball. The right side of his head was covered in thick, curly brown hair. He had blood seeping out the orifices in his face. There was a bag of what looked like cherry Koolaid being drained from his brain. He was wearing only a hospital gown with his hairy chest, arms and legs visible.

Six months ago, there were beeping machines everywhere with numbers that I had no clue the meanings of. Trevor looked like a robot with hundreds of cords and batteries keeping him barely running. He had a feeding tube in his nose; a ventilator in his mouth; 2 drains in his head; probes and electrodes all over his head and chest; IV lines; a catheter; a temperature tube in his throat; and circulatory leg cuffs on his ankles. He was tied down to the bed like some sort of wild animal, in case he miraculously woke up out of his comatose state and tried to escape. But Trevor wasn’t moving; he wasn’t even a person. He was completely brain-dead.

Six months ago, I had no idea what Trevor's future looked like or if he even had a future.

Today, Trevor is relearning how to walk and talk. He’s going to therapy and improving more and more each day. He is driving a boat, exercising and remaining extremely positive. The stubbornness we’ve always complained about is without a doubt what has pushed him through this recovery full-throttle. He is now able to lift his right arm, which we were told was paralyzed. As of a few days ago, he can now lift his right leg up a few inches as well. The fact that he can do this means there’s a chance he will get his right side functionality back.

Today, Trevor’s main struggle is communication. He still has a hard time finding words. The only full sentence he can say is still “My name is Trevor Rhoda.” He still repeats the same few words over and over again. He still can’t order food at a restaurant or tell us what he wants to do. But he can respond to normal conversation semi-accurately. If you ask him “what’s up?,” he’ll respond with something along the lines of “good” or “nothing.” If you hand him a lemonade, he’ll say something like “alright” or “yep.” When cued, he can finish the lyrics to songs such as “I like big butts and I cannot lie,” “Happy birthday to you,” “Honky Tonk” and “Just a Friend.” As far as we’re concerned, he understands the majority of what we’re saying, he just can’t initiate or come up with words on his own. However, as we all know, verbal communication isn’t the only way to communicate. Trevor finds other ways to tell us what he wants and needs. He can still nod and shake his head, high-five us, push us away and flip us off. He still has the same goofy expressions and sense of humor as he always has.

Today, Trevor and I were home alone. I said, “No parents, no rules, let’s party!” jokingly. He looked at me, pointed to the door, said “well” and expected me to somehow interpret what he was trying to say. I followed him out to the garage, where he opened up the mini-fridge, handed me an ice-cold PBR, said “drink” and laughed. I didn’t drink it, of course, but it’s things like this that make me believe he’s still the same Trevor and that nothing, not even six brain surgeries, can change that.

Today, Trevor wakes up every morning and goes to the gym with our stepdad, where he lifts weights, rides the recumbent bike and does leg exercises in the pool. He then watches a few minutes of several different movies on TV until he has to go to therapy. During therapy, he works on his speech, writing and coloring. After therapy, he comes home, watches TV until dinner time and then after dinner, watches more TV. Throughout the course of the day, he takes a couple walks down the street and back. At any given time, if you ask Trevor what he did all day, he will respond with, “sit there.” The sad thing is he’s right; while he’s at home, all he does is sit there. It’s painful to watch my brother, who used to be one of the most active people I know, have no motivation to do anything. And even though I am so, so proud of his progress, it’s still heart-breaking to see him like this. I wish things were different. I wish he flew through this recovery as quickly as the last one. We’ve been told over and over again that this recovery is going to be a marathon. However, patience is something necessary for a marathon, and patience is a virtue I’ve never been blessed with.

I still don’t know what’s in store for Trevor’s future but I do know that he has surpassed my expectations in every way possible. The past six months have by far been the longest, most difficult and draining months of my life but they’ve also been the most exciting, fulfilling and miraculous. Trevor continues to amaze me with his dedication, positive attitude, stubbornness and sense of humor. I can’t wait to see where he’s at six months from now!