This is a commentary about the slow lane, about the slowing of time since I suffered a severe brain injury while skateboarding with my dog. This is a blog about recovery; about our '82 VW Westfalia. It's about writing, surfing, camping, married life, bleeding ulcers that make you feel old at 32; about family, friends, and my dog Artie; it's about cruising in fourth gear, getting passed by every car and learning to appreciate every second of it.
Overall, it felt refreshing to spend two days in nature. It was the first time I didn't spend an evening in front of the TV, and in my bed, apart from the hospital, for three months. We arrived at a San Clemente campsite at one o'clock Tuesday afternoon. The sun was shining. The first hour we spent readying the Vanagon, unloading the firewood. We listened to the new Fruit Bats album, and then to Bonnie Prince Billie, later Songs Ohia. The camper van stood out in a long line of large RV's, some equipped with satellite dishes. We took Artie for a hike. He walked the whole way carrying a stick in his mouth. When we arrived back at the site, I cracked a neer beer, Aimee poured some wine. We ate veggie dogs and chips and stared at the fire.
Occasionally I would look up at the moon and the stars. My gaze never lasted more than a four or five seconds. I lost some appreciation for the universe since the accident. The questions, the amazement is no longer there. I'm sad that it left and I hope it will return. I looked at the fire and talked to Aimee. Later we went inside the van, near the heater and played Trivial Pursuit. I was then dealt another blow, another realization that my intelligence has waned, when Aimee took a game. It was funny to see how happy the win made her. She kissed the gamebox. It was funny how disturbed I was from the defeat. I yelled and told her it was the injury. I finished my third neer beer, she her wine, and we went to sleep, the three of us on the Vanagon bed in front of a small space heater.
We woke up the next day to a cloudy, damp sky. We made breakfast on the stove and drank tea and coffee. Then my brother showed up with the surfboards in the back of the truck. Before I knew it, we were on the sand, looking at Trestles surf break. The sky was grey, the waves shoulder high during the larger sets. I was nervous. I had a hard time balancing as I put my wetsuit on. I saw bigger waves come through. My nerves were getting the best of me. I shuffled down to the water and felt the cold Pacific run in between my toes. The water was cold, my anxiety made it frigid.
I got on my board and paddled. It was a difficult paddle. I didn't have much strength. When I went under the waves, I couldn't hold my breath for more than a couple of seconds. After some effort, I was out in the lineup. It felt great but I was spent. I was more nervous than I thought I would be and a bit lightheaded. After ten minutes I caught a wave, went down the line, my balance seemed strong. And that was it. I called it a day. In retrospect, Trestles wasn't the best spot for a first surf after a brain injury. I was disappointed in my anxiety. Maybe I thought I would still have it. Maybe I thought that the injury wouldn't have an affect on everything I do. Maybe I was just unable to accept the facts. Maybe my abbreviated focus has prevented me from truly understanding my condition.
We walked back to the site, the rain now coming down. Aimee read as I wrote. The rain continued. We packed up camp and came home, one night early. Overall, apart from the surf session, it was a great trip. Seeing Aimee laugh and gloat over her win was enough. We needed that, I know she did.
It's been three months since the fall. Much of that time has been divided up between the hospital room, my living room, and the lobby to my rehab. Tomorrow that will change. We are taking the Vanagon to San Clemente where we will camp for a few days. The last time we were there was three days before a skateboard ride around the neighborhood turned into the ride that nearly ended my life. The main picture on this blog was taken on that trip to San Clemente. My hair was long, my muscles bulging...right? On that trip we talked about long trips in the Vanagon, the open road. Aimee and I talked about heading north to Canada. I would write and she would take pictures. We talked about taking control of our lives. Three days later, we both lost our grip on our lives.
Today, when I wasn't working, we were out shopping for our trip. I had visions of the excursion. Most consisted of me with the same scraggly long hair, the same powerful physique, the same straight posture. I stopped myself. That's not me anymore. Tomorrow I will set up camp weaker, slower, and with less hair than three months prior. Tomorrow, my beers will be non-alcoholic, my activities less strenuous.
It's strange to think that I am returning to the same place a different person. In the past I associated progress with time. I now feel as if I traveled back in time, like the skateboard was my flux capacitor. I am curious how I will take the challenge, how the new me will handle the great outdoors.
Last night Aimee and I watched Food Inc., a documentary on the production of the food we eat. It didn't come as any surprise to see that Capitalism might have gotten the best of us and found its way to our food supply. I know its been there in the past, Sinclair wrote about it in The Jungle but it's here stronger than ever.
Halfway through the documentary, a food safety advocate was explaining the reason why she began her fight for more regulations in food production. That reason; the death of her two and a half year old son from e-coli. The family had bought hamburgers and twelve days later, the boy was dead. The mother said her boy was so thirsty in his hospital bed, nurses unable to give him water for fear he might drown, that he bit a chunk out of the pink sponge that nurses give patients to wet their mouth.
As she cried her way through the memory of her child's insatiable thirst, I fought to keep my own memories at bay. I couldn't. It was a dream, which turned out to be reality, that I had when I was in the hospital. I was under heavy sedation, I was hooked up to a ventilator, recovering from a recent tracheotomy, unable to drink because the water would fill my lungs. My arms were in restraints. I remember looking outside at a parking lot. It was sunny outside. I told the staff that they had the wrong person that I wasn't sick. I begged them to let me out so I could call my family, and things would be cleared up. They didn't believe me. I then remember asking for water. They said no. They gave me little pink sponges shaped like stars that were dipped in water. I remember biting one of them and sucking every last drop of moisture from it. Around that time, my wife and brother entered the room. I tried to tell them they were holding me against my will. I told them they wouldn't give me any water. They acted as if they couldn't hear me. I now realize they couldn't, because of the tubes and the drugs. I pointed to a water bottle. They gave me another pink star shaped sponge.
The dream lasted for days. To this day, especially last night as I listened to the story about the young boy's fight against e-coli, I remember that dream, that feeling of thirst. I have memories of looking at nurses and other patients drinks and begging for a sip. I remember another dream when a large glass of iced tea was placed at a table next to me, just out of reach.
All it took was a vision of a pink sponge to bring everything back. Those memories of a thirst I have never felt before, of only wanting a drop of water but not getting it. The most troubling thing about it, about hearing that story of a young boy and his loving parents watching him die all because of a hamburger is I couldn't stop thinking about myself. The unquenchable thirst has now turned to a unsatisfiable need to talk about my own journey, a journey filled with dreams that turned out to be real life.
It's a great recipe: a bit of cognitive fatigue, a dash of sinus pressure to a damaged brain, some inability to focus, and voila, there you have it, one of the worst feelings in the world.
Three days ago, I started to feel it. It started with a sore throat, turned into a stomach flu, then back to a sore throat. Now, three days into it, the cold has found its way to my sinuses. I've had sinus pressure before. I know all about it. I'm allergic to cats, and two live in my house, sleep on my bed at night, shed in my face during the day, so I know all about sinus pressure. I never enjoyed it, no one ever does. Last night was the first bit of sinus pressure that I've had since my injury, I didn't like it. I spent the night wiping the tears from my eyes. Every five minutes I would try and rub my head to relieve the pressure. The right side of my skull is still numb and I could barely feel my fingers massaging it. The bulge on the right side of my face was expanding. By the end of the night, I once again was wishing I was dead.
It's odd when sinus pressure, or any ailment for that matter, becomes the tipping point. I feel weak because of it. I feel like I am unequipped. I know that it's something I need to get through. I knew it wouldn't be easy, but the knowledge that I am putting the once closest to me through it makes it even more unsettling. My last words to Aimee last night, after she asked if I needed anything, was "a bullet to the head."
Thirty minutes after I said it, I thought of her lying in the bed, next to someone she used to know, to someone that she now worries about on a daily basis, and repeating those words in her head over and over. I thought how weak I must look to her. I thought about the fact that this type of injury, or any illness, is what truly tests a person's will to survive. I realize that I have failed. It's all I talk about, it's all that's on my mind. I can't escape it, and neither can she, or my family. It's tough, knowing that I am ruining the lives of those that love me most. I used to know when to step back, I sensed when Aimee needed to let her emotions out, however illogical I thought they were. Now, I grow irritable. I accuse her of harping on the small stuff, I tell her that I have bigger things to think about. I have a one track mind and I have no options, I don't have the ability to step back and look at the bigger picture. All I see is a snapshot of me with a blank look on my face and unfortunately, that all that I let anyone see.
I watch more movies now than ever. I don't have many options, no drinks, no energy, no nightlife. As a way to avoid horrible television programs, which Aimee seems to be addicted to, I watch movies, that is, unless Jersey Shore is on of course. I've always been a critic, and now, after the brain injury, critiques seem to be rolling off my tongue. Over the past few days, we've seen three movies. Out of the three only one received a positive review. What's strange about my reviews, after the brain injury is now the smallest thing will result in a negative critique.
For example, the other night we watched Julie And Julia, a film about Julia Child and some woman who starts a blog about Julia's recipes. This was almost unwatchable, not because it's a movie about cooking and I now longer have the sense of taste. Actually, I like cooking, I'm no good at it and have no patience for it, but overall the idea interests me. No, Julia And Julia received a cognitive thumbs down for one reason and one reason only, the husband of the main character chewed and talked with his mouth open for the entire movie. He smacked and breathed heavily through his nose while he did. Each smack of his lips took me over the edge. At one point I was ready to throw the remote across the room.
Next up; Where The Wild Things Are. Now, I consider myself a fan of Spike Jonez. Not in any weird way, I like what he's done so far. This is one thing that he's done that I didn't like. Granted I have a cold, throw in a little brain damage, but I couldn't get into it for two other reasons. I never read the book, nor am I a ten year old child who needs to be taught the most basic of life lessons. I'm old enough and wise enough to know that I, nor anyone else, will ever learn those lessons, and if we did we would forget them in a matter of minutes, at least as soon as the latest episode of Jersey Shore comes out. Throw in he high pitched screams from a young boy claiming to be a king to oversized muppets, and well I was once again ready to toss the remote across the room.
And finally, Inglourious Basterds, my favorite out of the trio. I dug the premise and I wondered why no one had thought of it before; let's see make a movie where the one most reviled group in history is picked apart and held accountable for their actions. Throughout the movie, I was sweating, I was enthralled. Whether it was the dialogue, the cinematography, I don't know, but I enjoyed it.
So there are my most recent reviews. Something I like to call, Reviews From The Lame Brain.
I'm back on the beat, sure I might have missed a step or two, or my strides are a bit uneven, but nonetheless, I'm back writing. It feels good. My confidence has taken a beating, but it feels good. Today, I was speaking to someone whose best friend and roommate had been hit by an eighteen-wheeler while riding his bike to work. He was pinned under the tire, and dragged for twenty feet. He is now in the hospital, shattered pelvis, intubated, sedated.
Turns out he is at the same hospital, the same ICU trauma room I was in. Over the phone, as his friend cautiously explained his condition, I pictured that room, that square room with beds running the perimeter and the nurses station in the middle. I pictured the beds, the curtains used for privacy. As he spoke, I pictured walking through the ICU after getting my head screwed back on. I remembered the beds, the people in them. I saw old, young, I saw grieving family members crying near their loved one's bedside. I saw legs and arms suspended in mid air by slings. I heard heart monitors and moans, the slurping sounds of lung suctions.
After the interview, I visited the blog that the injured man's sister started. In it, she wrote her brother's condition was improving, though doctors had told her family that he was "not out of the woods."
I stopped at those words in quotations. It's the same phrase those very trauma doctors used for me. The same phrase my family, my wife, and my friends had to take home. It upset me to think that's the reality of it all. That even the doctors, however equipped and knowledgeable they are, are never sure how things will turn out. It bothers me to think that I exited those proverbial woods, albeit a bit weaker, more irritable, and with a battered libido, but others won't exit the same woods. It bothers me that other people, other families will see the same experience, hear the same sounds, process those same cliches, and pray for an exit from those woods that the doctors refer to.
I sat and watched Inglorius Basterds, sweating the entire time. I wasn't sure what was wrong, my palms were sweaty, my feet moist, but the thermostat read 65 degrees. Sure I was into the movie, but not to break out in cold sweats. It lasted the entire night.
Later, while rubbing my eyes in bed, I realized I had crashed into an imaginary brick wall. The weekend's activities got the better of me. I should have known they would have, I just didn't expect for it to take so long to hit. Before, early in my recovery, the crash would come nightly at eight o'clock every evening. It was then I would stare, no expressions on my face and no thoughts in my mind, at the TV screen. After 30 minutes I would slowly begin to snap out of my full body lull.
In the past few weeks, fatigue's routine collision came less often. I was back hanging out with friends, staying alert the whole time. I thought I had finally gotten the better of cognitive fatigue. I thought wrong. It's still here with me, like a friend that falls asleep on your couch when you want to be alone. My pal fatigue still lingers, but he's changed in these past few weeks. He times the collision for when I'm least prepared. He hangs back and waits until I have convinced myself I have progressed onto the next step and then he smacks into me, headfirst.
Last night, my buddy, fatigue, gave me the cold sweats, but that's not all he gave me. He gave me self doubt, he gave me depression, he gave me a weakness I haven't felt in a month. By the end of the night, I was convinced my writing gig was up. I believed I had lost a step and would never catch up. I laid in bed and wanted it to be over. I wanted the weakness to disappear. I wanted the strength, what little I had before, to return but I knew it wasn't possible.
The strange thing about this injury, this so called recovery, is every time I think I have it figured out, it changes. The symptoms are in flux and I am left to adapt to the unknown. And once I adapt, it changes again. There's no regularity and it damages what is already a fragile mind. Once I thought the dizziness was gone, it returns. Once I expect it to appear, it's nowhere to be found.
It forces me to wish for the impossible, to speed up time, to finally get a grasp on my thoughts, on my condition. I no longer wish for that which is attainable. This is what a crash feel like inside. Did you enjoy the ride, I sure didn't...
"Hola, coma estas," said the Mexican man from behind the counter.
"Bien, gracias. E tu?" I responded.
"I'll take a breakfast burrito with eggs, cheese, beans, potatoes, salsa fresca, por favor."
"OK," the man responded. He looked up at me. "What happened here," he said in a thick Mexican accent while pointing to the top of his head.
"Oh, I fell."
"You feel alright?"
"Yeah, I feel pretty good, gracias.
"You hear voices in your head?"
"Only a few. They are my closest friends."
The man laughed and handed me my debit card. Five minutes later he put my paper bag, burrito inside, on the counter.
"Take care, amigo," he said.
"Si, te vaya bien."
It was the second time in two days that someone from behind the counter noticed the scar on my head. The day before, I stood in line at a sandwich shop and looked up at a menu board. When I was ready to order I glanced down at the young female cashier with tufts of brown curly hair sprouting from a cap. She was staring up at my head, her mouth was agape. As soon as I made eye contact she looked down at the register.
These past two months, whether I had a maroon helmet on my head, a large indentation on the right side of my skull, or a red scar tracing its way down behind my right ear, I've seen the looks, and I've felt the stares. People have treated me like I am some living specimen on display. I was the same as them before the fall, no matter how hard I tried not to look as I passed a bad car accident, and I too caught myself staring at the differences that make us who we are.
And now, I see people, the normals I like to call them, studying my head trying to crack the code, trying to figure out where it all went wrong for me. I see the attention they pay when I talk. After a few words they appear disinterested. 'It's just a scar,' they seem to be thinking. They are right, it is only a scar. I only wish more people would ask if I hear voices inside my head. That's when the humor, the humanity comes out and that's when we laugh and become people, not the disabled, not strange specimens on display for all to gawk at and ponder, just people, some of course with a few more voices in their head than others.
We filed into a small meeting room. Some sat in wheelchairs at the wooden table in the center of the room, others sat in chairs at the same table. In all, twelve of San Diego county's recent brain damaged. At the front of the room, stood Susan Hansen, the chief operating officer of the San Diego Brain Foundation. She was there to introduce us to her organization. She told us about a walk for brain injury victims. She informed us about monthly meetings, social gatherings, and a help-line for those in need. I sat and listened, surrounded by my fellow clients. I looked at them and it was as if I could see their scattering thoughts from the look on their faces or from the heavy breaths they let out. I could feel their focus wane. I thought about those monthly meetings, the walk for the brain foundation. I thought about once again sitting next to them in a different setting to discuss our injuries. I pictured myself once again digging inside searching for positive thoughts and motivation. And I thought about that silence that goes with a room full of people with weakened minds. It's the loudest silence there is, and the saddest I've known. I am not sure if my own weakened mind can handle the faces, the spittle on the corners of their mouths. I can't handle the reality of it all, the silent struggle.
The reason for my difficulty: I now understand I caught only a glimpse of that internal darkness. For the first few weeks out of the coma, and then for a few minutes everyday, I knew what having a blank mind was like. I remember tearing out of the darkness. It felt as if time had stopped, suspended animation. Inside the meeting room, I saw those around me with the same look plastered on their face.
That look, that blank stare starts from within. It is overpowering and unstoppable. I am fortunate, I am wide awake, my energy is returning. And now that I am further away from that dark state, I am not sure if I would want to return. It's paralyzing to see and it hurts to know that nothing can be done, only time can lapse.
I appreciate the mission of the brain injury foundation, and I appreciate what it does for those in need, but at this point, three months since the swelling, two months since waking from a coma, I can't get past the blank stares, I can't come face to face with those memories of pure and total nothingness, that feeling of suspended animation.
I exited the white hospital mini van and stared up at the 1,591 foot summit of Cowles Mountain, the highest peak in San Diego. Accompanying me, was a fellow rehab client, a young, wounded marine and my physical therapist. I had climbed this mountain before, months before my fall, with Aimee and our dog, Artie. I remembered sweating profusely at the summit but not out of breath.
Before I knew it we were off. At first, our physical therapist lead the way. I took up the rear, alongside the marine. A couple of minutes into the hike, the marine shot through a shortcut and ended up at the front of the brain damaged expedition. Shortly after, he was setting the pace. It was a breakneck pace. I saw him hop over large rocks and nearly start jogging up every other switchback. My physical therapist was behind him, I behind her. Ten minutes in, not even a quarter mile of the one and a half mile hike out, I was winded, my throat dry. The pace remained steady. I looked up frequently to see other hikers hundreds of feet above me. I quickly looked down to watch where I stepped. I had to be careful, my shoes, the old vans with little traction slipped on the dry, rocky surface. When I looked up again, I noticed I had fallen behind. I let out a quiet grunt each time I had to step over a rock.
By the time we reached the summit, only thirty minutes after we exited the van, my energy had depleted. We sat and talked on the summit for five or ten minutes and then started our trek back down the mountain. Again, the marine took the lead and I brought up the rear.
I was never one to take the lead. I was in good shape, but never great. One thing is for sure, I've never felt so weak in my life and it's a hard feeling to accept. Now three months since the fall, my weakened condition is becoming the norm, the new me. Call it acceptance, call it acclimation, I don't know what to call it but I do know it's hard to accept that I lost so much strength, so much stamina all from a ride on the skateboard, all from a fall. Each time I return to an activity I had done before, I make the painful comparison, from where I was to where I am now. I remember how I felt and I am nowhere close.
I don't want to accept the fact that recovery doesn't always mean a return to normalcy. I struggle with this thought every day. I struggle with the realization that it will take hard work to return to an average condition.
I went into the hospital, the day of my fall, weighing a whopping 155 pounds. A month later, I left at 120 pounds. I was weak, the muscles in my arms and chest had atrophied. A nerve in my right arm was damaged from waging war with nurses and doctors and trying to fight my way out of the restraints, and I couldn't use my right arm for days.
Since I've returned home, despite no longer having any taste, or smell, I have gained 20 pounds. My appetite is stronger than it was was before head butting the sidewalk. I don't know why this is, you'd think it be the opposite but it's not. Now that taste is gone, I am eating every few hours, I am finishing my entire meal and I can't stop myself.
The other day I was changing in front of our sliding glass closet doors, sorry it's habit, and I caught a glimpse of my body from the side. The reflection showed a protruding belly at the base of a weakened, atrophied upper body. I quickly put on a tee shirt and ran away from the mirror. As I walked I looked down and saw the belly. I patted it like old men do, trying to act as if they are proud of it, that it is a sign of success. Aimee commented on it and laughed. I stopped smiling.
That day, I vowed to start a new workout regiment. We bought a big, green bouncy ball for sit-ups. I have Yoga tapes, a workout bar, a pull-up bar. I have all of the necessary equipment, if only I had the energy. Most of my days, if not in rehab are spent on the computer, trying to relearn how to write, or spent reteaching Artie how to walk on a leash, or cleaning up after Aimee. Right now, the duffle bag she calls her purse is thrown on the couch. There are papers and keys spilling out around it.
Back to the subject, doctors say my thoughts will wander, they also said my obsessions will intensify. They were right again. No wonder why they smile all of the time. They are right and rich enough to live a healthy life, free from harm. Back to the subject once again, tomorrow is the day I start my new workout regiment. I have to go order pizza now, apparently Aimee is not going to do me this one favor...
"Do you want to hear the first email I sent the day you fell?" She asked from the over sized, leather chair in the corner of the living room.
I knew the right answer. I knew it wasn't something a person should hear before their first night out on the town since suffering a traumatic brain injury.
"Yeah, sure," I said, curiosity had gotten the better of me.
She began to read the email. Halfway through, she stopped after the words "blood on the brain," "induced coma," and"ventilator." Tears clouded her eyes. Her emotions became too much and she got up and went to the room to change for our night out.
AS she readied herself in the other room, I went over to the chair and picked up the laptop. I clicked on the email and scrolled through the responses and the daily updates full of ups and downs, the days when nothing changed, and the days when I became responsive but too erratic to not be sedated.
She came back into the room dressed in tight black jeans and a tight thrift store sweater. Her entrance brought a smile to my expressionless face. We left the house shortly after, on our way to see a friend's band play.
Bar Pink was already crowded by the time we arrived. We found two stools at the bar. I ordered a St. Pauli's Non-Alcoholic beer and she ordered a Guinness. We sat and talked about the emails. She told me that doctors were constantly telling her that I was atypical in every way; I didn't fall into a coma on my own, I required the sedatives of a person twice my size to keep me under, or that the swelling in my brain would not decrease even after doctors removed a portion of my skull, I was a strange case.
She told me about the day which my brother referred to as "Sunday Bloody Sunday." It was the day that I awoke, asked for my wife, and asked how my dog was. When I saw her, I gave a thumbs up. She left hours later to get breakfast in a great mood. She returned to see a pool of doctors around my bed, nurses chased her out of the room. My throat had closed up and I was near death.
As she told the story, some indie chick with jet black hair and neatly trimmed bangs yelled to her friend behind me. Her voice was piercing. Each word she uttered went straight through my skull and into my eyes. I felt myself squinting in response to her every word. A few seconds later some drunk dude nestled up next to me at the bar. He elbowed my stool and rubbed up against me. As the girl yelled, the dude elbowed. I stood up from the stool. The first band started to play. I could still hear the girl's obnoxious shrill. More people bumped into me. Sweat formed on my brow, I was dizzy, the whole thing was like a dream. Aimee asked if I wanted to leave. I said no but I felt yes. She sensed it and we walked out, two hours before my friend's band took the stage. Not exactly the big night out on the town. Judging by my reaction, it will be quite some time until I return to San Diego's music scene. I thought I was ready, but I learned I was nowhere close. I learned I can't separate myself from my surroundings.
In the gym today during rehab, I stood near the corner of the room, one foot in front of the other on a yellow line. My arms were crossed against my chest, my eyes were closed, in my right hand was a white timer. The test is a way to measure the damage to the Vestibular system. A normal person is said to be able to hold the stance for thirty seconds. On my first day of rehab,only four seconds passed before the wobble forced me off balance. Therapists informed me that my Vestibular system had been damaged. They said it was a matter of time until it came back.
There I stood, in the same spot, taking the same test I had taken a month and a half earlier, dressed in the same surf trunks, most likely the same grey undershirt. By twenty seconds, the wobble had me swaying from left to right, like I was on board an ocean vessel during a storm. I recovered, barely. By forty seconds I regained my balance. I took deep breaths and thought about upcoming stories I had to write, I learned that when it comes to balance, concentrating on anything but the task at hand is helpful.
I heard therapists talking in the distance. "Ok, try and move your left leg. Can you wiggle your toes for me?"
I felt the breeze of people walking past me. I opened my eyes, the distractions were too much. I looked at the timer and it read two minutes and nineteen seconds. I smiled through the initial dizzy spell. Discovering progress during this type of recovery is strange. The reaction is always overblown and exaggerated.
"Two minutes and twenty seconds," I said holding up the timer like it was a trophy.
"Hey, that's amazing. Great job," my physical therapist said to me.
Her comment made me think about the achievement. Nowadays, everything, not just the minor accomplishments but also the small setbacks, get blown out of proportion. The insignificant physical feats are treated as some sort of indication that could determine the future of your entire life. The mistake on the math question is evidence that your brain will forever be damaged.
I pictured myself raising my arms, hands clasped together, all just for standing in a straight line for two minutes. I thought how silly it all is. I know there's no other way. I understand that the nature of this injury has a person frantically searching for any sign of improvement. It shows my judgment has returned to a normal scale. Returning to the normal scale is scary. It shows just how far back I fell. It shows me how weak I was, how unsteady I stood. It serves as a constant reminder that I am damaged goods.
My time at rehab is winding down. By early January I will be on my own. I'm ready to get back to my life, to concentrate on writing, to establish a new routine. And while I look forward to next month, to getting the chance to work on my recovery on my own terms, the experience at rehab has been positive. I have seen major improvement during the past six weeks. Therapists have told me that they had to figure out new ways to challenge me, that I have "blown their tests out of the water." During my time at rehab, my strength, balance, and confidence has improved, my understanding of this injury has grown.
Take away all of the praise, and the statements about my speedy recovery, the thing I will miss most are my fellow clients. The times when I see their sense of humor shine through their toothless smiles, or when I see them take their first steps from their wheelchair, or when I hear a stroke victim's speech improve; these experiences are what I choose to take from rehab, they are the key ingredient to whatever recovery tastes like.
One day, during a group therapy session, the neurologist said we were all members of the same community. I cringed when she said it. At the time, I considered us prisoners, held our against our will, in our own cell. I felt our injured brains held us captive, dangling the keys in front of the barricaded door. There is some truth to that. This recovery is a personal journey from outside that dingy, dizzy cell to some unvisited oasis, some unexplored mindset that I, nor anyone else, could ever envision.
Although this journey is one that no one can truly accompany us on, seeing the other clients embark on their own journey was uplifting and served as a motivation of sorts. I saw people I would never know, a wounded vet, a fragile teenager awaiting a manslaughter trial, those injured in motorcycle accidents, an older woman just weeks after a stroke, she voices her frustration about the limp right side of her body. Knowing these people, learning about their experience, has been a lesson in understanding. It's brought me back to the idea that we are all so similar, that save for a small fraction of humanity, we are innately good, we are inherently fragile. I have realized that deep down we understand that a positive outlook is key to recovery. I've learned this at the ripe age of 33 and I know at times I will misplace the knowledge, but I know I have no choice but to search for it again and again. I've fought like I've never fought before during these past two months. The altercation has weakened me, left me cloudy and unsure, but I wouldn't be here if I didn't want to fight and seeing others go through their own battle has left me inspired to continue this lonely trek to recovery.
It's difficult to embrace the day, when you can't tell the difference from one to another. I spend most of my days in my house, I work for a few hours, take my dog for a walk around the block, do some stretches, and my day is over, my energy spent. By evening time, I am on the couch, eyes fixed on the television screen.
This is my new routine, my new way of life since the brain injury. Just the thought of changing the routine, of going someplace like a coffee shop or the library, drains every ounce of being out of me.
I find myself trying to make plans with friends, but when the time comes I find it hard to move my body.
Now, even the thought of writing something new, a different topic than the brain, sucks the energy from me. Occasionally an idea pops into my head, that same feeling that I had when I was a teenager when I thought about an idea for a story. Back then, the idea took control of my entire mind. I couldn't keep my thoughts away from it. Now, it is still there but it is fleeting, opaque. As soon as I try and focus, it vanishes from my mind's sight, leaving me with thoughts about my condition, or about how weak this mind has become.
Lately, there have been concerns raised. There are concerns about my mood swings and about my fits of rage. Part of it is my fault, I understand. I talk too much about what I am feeling. It's not by choice, I'm only trying to understand my condition and talking about it and writing about it are the only ways I know how to do that. I understand why people are worried, but fighting this with worry, fighting it in general, won't help. What they doesn't understand, what no one can understand, is there is no way to stop it, only time can slow it down. In that time, it will be on my mind. It will continue to rule my day until I have the energy to take it on. I'm realizing now that I am far from that point, far from really living my life.
"It's what they call an Existential Crisis," my neurologist said, responding to my question. She had been speaking about the importance of self-awareness and how insight is diminished after suffering from a brain injury. She told the group that we, the brain damaged, need to become introspective, that we need to have an idea of who we want to be and how we want to present ourselves.
And while I agree that self-examination is needed, I've recently become fixated on my every move. It kills me when I flash a fake smile, or overcompensate with a fake laugh. I think about what a full recovery means and I hate to think it is a return to the same person I was before the fall, back to a guy who cared too much about everyone else and not enough about the people around him. In response, I've placed myself under a microscope and unfortunately, the image I see is disturbing. I see a person that is still out to fool others by making them believe I was something other than myself. I see a person whose reactions are full of agitation, anxiety, and aggravation. I see a shallow individual so I dive deeper.
But there's another side, the realization that we are so entrenched in our routines we spend most of our lives in a mild state of unconsciousness. I think about this and I dive deeper.
These thoughts were at the root of the question I posed to my neurologist during our meeting. "An Existential Crisis" occurs when a person experiences some catastrophic event," she explained. She said it is common during recovery to become too introspective and one has to find the right levels of self awareness. Her explanation is problematic, after all, finding the right levels is the problem, it always has been and it always will be.
I was back at rehab today, the first time in two weeks, since doctors put my head back together. There were new faces, some young, some older, most fresh off the injury with fresh wounds, new scars from where the tracheotomy tube was inserted. It brought me back to days after I woke up from the coma, when I went to see the throat doctor.
He was a younger physician, his hair was long and wavy, in the beginning stages of turning gray. I sat up on the bed and he asked me questions about my accident. He pushed his stool closer to where I sat and asked a question. As he did, I noticed his hand reach towards me. He touched the tracheotomy tube as I talked and yanked it out of my throat without warning. He threw the phlegm covered, 8 inch tube into a basket and quickly taped a bandage over the hole in my throat. I can still feel the tube slipping from my throat and to this day I am still in shock.
Today, I found myself staring at the throats of the new patients and seeing that bright red scar. Each time that scar was spotted, the memory, the feeling returned.
The entire rehab experience, seeing the patients, watching them shuffle through the lobby brings me back to the days after the coma. I hated those days, now more so than ever. Only now do I understand how injured I really was. I see that I had no idea what had happened nor what was happening. At the time, I thought I knew more than the doctors that I had seen the worst of the injury. The new rehab patients act the same as I had acted in the days following the coma. Nothing has been processed. Nothing has been accepted. I want to tell them that they need to prepare themselves. I want to let them know the worst is yet to come. I want them to know that the brain heals in a different way but I don't say a word. It's no use. Their minds aren't ready. They will find out on their own. There's no other way. It weighs heavy on me and it's sad watching people embark on a solo journey back whose only real goal is a return to normalcy, to the status quo. It's a journey that nobody can ever truly understand, a journey that makes me wish that I never had to set out on.
It ended in a fit of rage, with a shout that I was in the midst of a nervous breakdown. It ended with a slam of a door, the thud of shoes hitting the wall, the crack of books falling from the bookcase onto the floor. It ended with me on the couch, head in my palms quivering from anger. It ended with me pacing the floor to the sounds of Fugazi and then later, Seaweed. It ended with disassembling the doorknob because the latch had become stuck. It ended with a hug from Aimee, with her telling me that every thing is going to be all right. It really ended as I write these words.
It started this morning with the taste of battery acid in my tasteless mouth. It started when I opened my eyes and told myself I no longer wanted to be a part of this recovery; no more updates, no more forgotten to-do lists. It started with the understanding that I will not be normal for quite some time. It started with despair like no other; morning despair.
The mindset stayed throughout the day. It was inside of me in the doctor's office before my doctor removed the stitches and staples. I quickly masked it when he asked how I felt. I put my best fake smile on and straightened my spine and shot my shoulders back; "Great. I'm feeling real good."
It was just another lie, just another way to describe the indescribable. Just part of the act that I worked so hard on before the accident, the act that I've since mastered.
"Good. You look good," he said.
Just another blank compliment, another empty statement.
My despair remained through the day. It was there inside the grocery store. Once inside, Aimee repeatedly asked what I felt like eating, her love showed and my depression shoved back. "I don't care, I have no taste."
The feeling turned to rage as Aimee and I walked our dog, Artie. The pup was excited. He pulled and didn't listen to my commands. I grabbed him and forced him down to the sidewalk. My jaw was clenched, the battery acid flavored saliva filled my mouth. Aimee asked for the leash and told me to calm down. I didn't say another word for the rest of our walk. I was ashamed and irate at the same time, not calm. The anger stuck with me. It erupted when I tried to disconnect the iPod. My trembling hands fumbled the jack. That's what put me here in this room, my own big escape in my tiny dungeon.
The doctors said this would happen, that depression and anger would increase. At the time I guess I wasn't listening, just sitting there with perfect posture and a fake happy smile on my face.
The nerves, the anxiety is setting in. It started in my stomach with a fluttering feeling deep in my gut. Within seconds it had spread up to my head, the fluttering turning to an expanding presence inside my skull. I rubbed my temples. I asked Aimee if it was going to hurt.
"No, it shouldn't hurt. The doctor is doing it," she said.
"It will hurt. They're removing two dozen stitches and thirteen metal staples from my head. It will hurt."
I know this from experience. After waking up from the dark mental abyss they call a coma I remember sitting upright in a hospital bed, a male nurse stood to my side holding what appeared to be a small metal crowbar. I felt the bar inch along the top of my head and then I felt a pain rip through my skull. Another pain, this time starting a half of an inch from the initial pain. I yelled as he pulled out the large metal staples from my head. I cried out so loud, the nurse stopped and a doctor was called in the next day to finish the job.
The pain of metal ripping through my skin was one of my first memories from this experience. It's one I'll never forget, one I'm reminded of each time I look in the mirror and see the inch wide gash above my forehead, the gash that will remain for the rest of my life, no matter how long or how short that is.
It's that same pain that spawned tonight's anxiety, that fluttering feeling deep in my gut and the ballooning pressure in my brain. This anxiety is now so close to me. In the early days of my recovery, I would tell myself none of this was happening. It was happening. Now, the anxiety is there and I now understand it is not leaving anytime soon. The anxious feeling is like a friend standing by my side as we walk on to the front lines of an unimaginable war, the only friend that truly knows what I am going through. It's the only friend that isn't fooled by my act, the only one that sees right through me and sees the fright that lives inside of me.
"You should go out, have fun. I'll be fine alone," I said. Truth is, I didn't want her to go. I wanted her by my side, sitting on the chair next to the couch. I wanted to see her sip on a glass of wine as we watched a movie. She is one of the few solid things in my life, always has been, but is more so now than ever. I didn't want her to stay because I felt like talking. I especially didn't care for her having to go through a lengthy discussion on my state of being, I just wanted her there. It had been a trying day, a depressing day, when thoughts, morbid thoughts, circulated my mind; thoughts about my own existence, fleeting wishes about not making it out of the coma, not having to tiptoe through an insecure and unsure life.
I hated the thought of dragging her through another dark conversation, one she would spend repeating how lucky, how strong, how amazing I am. I knew she needed a release and I know I don't have a chance at the same. And so, she left, dressed in tight black jeans, her amber-colored, thick hair pouring out of a knit wool cap. I could barely look at her, I can barely describe how pretty she looked, there are more tears than ever, more love than I thought imaginable. I felt ashamed for sending her off alone, I feel remorseful for shoving her into this.
In seconds, months in my time, she was gone and I held on to the remote control in one hand, a cup of hot tea in another. It's my version of a party, unfortunately, it's my new release. I scrolled through the movie channels. They were filled with Shia Lebeouf movies and cheap, softter than soft-core porn. I settled on Showtime's, Californication. Aimee and I had watched the first season, or should I say we laughed at the first season. It was horrible, another story about a struggling, over-indulgent, misogynistic writer, a misunderstood genius who never says anything clever or enlightening, it's like a sequel to Juno but geared more for aspiring non-original novelists like myself, people who have had their novels rejected by dozens of publishers. A show that is so vapidly cliche that I spent the entire night watching the complete third season.
As I watched, I was reminded of one night in Atlanta, more than a year ago. I was at a bar, my friends were chatting off in the distance. I sat sipping on a beer, smoking a cigarette. Some drunk, bearded dude in his early thirties sat down next to me. I said hello. He responded by asking what I did for a living. I told him I write, I'm a journalist, and I am in the process of trying to find a publisher for a novel I completed a few years back. He responded, speech so slurred I felt trickles of spit on my left forearm, that he too is a writer. He told me he was a writer for Californication. I then told him how poorly written that show was. He stumbled off shortly after.
That was who I was before and watching the new episodes of Californication brought me back and I was once again a critic; for a guy who shortly after the brain injury sat down for hours and was entertained by Transformers 2 and G.I. Joe, it's another example of my recovery, quite possible an unfortunate example, but an example nonetheless.
Patience is a hard thing to hold on to, now more than ever, now that a stroll around the neighborhood qualifies as an exhausting excursion, or when a trip to the grocery store now feels like a journey to the mall on Black Friday, or, when a shower is equivalent to a day at the spa. Patience, in fact, is one of the two things I was told to have during the first six months of recovery. Only one month into it, my patience is waning and my sorrow is intensifying.
It's difficult, considering most of my days consist of lying on the couch, trying my best to keep my focus on the book I'm reading, or concentrating on writing a meaningful sentence, or, forced to watch Teen Wolf or maybe Bill And Ted's Bogus Journey on an overpriced movie channel because nothing else is on. A day for me feels like a week, two weeks when I'm left alone and it's impossible to stay patient when time slows to a crawl. My experience has left me feeling like a trucker shifting to a lower gear during a steep mountain climb. From my perch in the slow lane I see the lives of others pass me by, unaffected by the slope and unknowing of my effort.
For days, my patience has dipped below empty. Each hour I spend on the couch is an hour lost, added to the hundreds of hours that I spent in the coma. I've told dozens of people that I'm fortunate for my condition, a condition that even doctors are caught off guard by. One doctor even said he was unable to see any any signs of brain trauma. Sure, I might be fortunate, but I consider it an unfortunate fortune.
The other half of the two part recipe for recovery; look at everything with a sense of humor, respond to all setbacks with a chuckle, don't take anything seriously. I'm unsure which part, patience or my sense of humor is harder to hold on to. It disturbs me to picture myself laughing blindly at the gaps in my mind, in my ability to focus, my balance, both mentally and physically.
It perturbs me to have lost my grasp on my thoughts, on my emotions, and it kills me to be confined to a living room, a tiny prison where the television stands guard and watches my every move. Lately, it's been impossible to look at my situation, my wavering mindset and laugh. Mostly, because this injury, this recovery, is no laughing matter, it is my sole chance for change, and so far I am failing, my truck is running out of gas, unable to take me up the hill. The last thing I want is to lean back and meditate and the last thing I'll do is laugh about it later.
Today, I was told that forty percent of people that have suffered severe brain trauma are prone to seizures, that the seizures could take months, even years to develop. My doctor also said I might have already had one and didn't know it, that the effects of some small seizures could amount to momentarily blanking out, to staring off into the distance, not talking, not responding to anyone or anything.
'Great, some more bad news. The fun never ends,' I thought to myself.
I scanned my memories over the past month, looking for signs of seizures. I stopped when I realized there have been numerous occasions when I found myself in a blurry eyed daze, though, never did I consider myself unresponsive to the outside world, more fatigued, depressed, or in deep thought.
It started last night. I had been on the couch writing for a solid hour. As soon as I finished, I got up and sat down to eat dinner. As I ate, I felt a tingling sensation in my left hand. I made a fist to get the blood flowing. I raised my arm and then lowered it. I repeated the movement several times. I saw Aimee looking at me as I did. Seconds later, the numbness disappeared.
"What's wrong?" She asked. There was a concerned look on her face. Her eyes were opened wide, her mouth slightly agape.
"Nothing, my left hand is a little numb."
"That's not good."
As soon as she said it, I knew she would bring it up during my check-up the following day. I was right, that's exactly what she did and that's when my doctor let me know about Post Traumatic Seizures, about the odds, the frequency for those with brain injuries.
After we left the doctor's office, after I took up residence on my couch, I thought about the day, about the information and about Post Traumatic Epilepsy. I stared out of the front window, and thought about the condition. I thought about the day of the fall, when I hopped on the bike, leash in hand, and then decided to put the bike down and pick up the skateboard. I thought about how that decision, that slight change of mind, changed my life, Aimee's life, and my family's lives, forever.
A few minutes later, as I stared out of the window, I started to laugh. I thought about the numbness in my left hand the night before. I laughed because I realized my hand might have just fallen asleep. I laughed at the fact that this condition, this brain, now has the power to turn an everyday occurrence into a life altering symptom.
Fresh out of the shower, I walked into the room and opened my dresser drawer. I sifted through folded tee shirts, carefully choosing which shirt would look best despite the fact that nobody but my wife and brother would see me. I picked one and brought it to my nose to make sure it was clean. I inhaled, trying to pick up a scent. I realized as I was sniffing for a scent that I had no smell, that it has been gone since I woke up from my coma. During the past few days, I've forgotten about the senses I lost in the fall. Yesterday, I noticed myself slurping the roasted tomato soup I was eating, searching for flavor. Again, there was nothing. Each time this happens, I grow frustrated.
Initially, I told people that losing these senses didn't bother me but now I realize I just hadn't dealt with it, that it has taken an entire month for me to accept the fact that I may never taste another flavor, enjoy another slice of pizza or fish taco, or to smell the ocean, my home, my wife's scent. I'm just now accepting the fact that I won't know when deodorant is needed, when an extra go at the toothbrush is required.
It's frustrating, knowing the symptoms but not being able to deal with the condition. For instance, I took a break from writing this entry when Aimee stepped in the door. She carried a small pizza box in her right arm. Driven by hunger, I got up from my post on the couch and took the box from her hand. I opened the box and respired heavily through my nose, in search of smell.
"It sucks. I know I can't smell but I still try," I said. It had been just two weeks since my neurologist told me there's no way of knowing whether my smell will return. That there's nothing that can be done to find that out and that only time will tell. Apparently the information was never processed.
"It's going to take some time, you have thirty-three years of smelling and tasting, be patient, it's going to take time," said Aimee, attempting to ease my nerves.
"I've been awake for a month now. I'd say that was enough time. It's hard. The hardest part is this half-cognizant, zombie-like state I am in."
There's no other way to describe it. I feel like I'm shuffling through this recovery, like I'm operating in some sort of unconscious state. It would be one thing if I wasn't aware of it. It would be great if each day of recovery brought on a new level of insight but instead, I am fully aware of my disabilities, though unable to process them, unable to change my reaction.
It's made me realize that I was probably the same way before the fall, that a good portion of my actions and many of my reactions were programmed, hard-wired responses to outside stimuli. I understand I might be hard on myself when it comes to my present condition. Before the fall, I operated in an involuntary fashion whereas now each thought and every move is scrutinized, held under a microscope, in search of some sign of recovery or a clue that improvement is near. It's strange, working towards a full recovery, to a point where much of my existence is dictated by programmed responses.
It was time. I grew sick of answering when I was going to shave the other side of my head. The joke that I was a trend setter had run its course. And now, no longer having the helmet to hide the wound on the right side of my head, my trend setting hairdo, fresh, puss-filled wound, and line of black sutures and silver staples was enough to make a person sick. I was ready to shave my head, an attempt to regain some sort of skull symmetry. Though, not surprising, what started out as a basic task turned into an hour full of anxiety and fright, full of nerves and uncontrollable stress.
I commissioned my mom to be my barber. It felt like the old days, when in an effort to save cash, my mom picked up the shears. Soon after sitting down in the kitchen, a towel wrapped around my neck, gauze placed over my wound, the flash backs began; childhood images when her haircuts were cause for name calling such as Dumbo, Dorkian, Elephant Ears. Or the time when she accidentally snipped my left earlobe and droplets of blood trickled down my neck onto my shoulder. I couldn't get the thoughts out of my head, that is until Aimee walked into the kitchen holding the clippers she uses to thin the cat's winter coats.
"Wait, you said pet dander isn't good for the wound. Are you sure we should use those?" I asked. Worry began to set in. Sweat formed on my brow, in my palms, and across my chest and back.
"Yeah, it's fine I cleaned them with alcohol."
My attention shifted back to my mom who studied my head, shuffling from the front of my head to the back of my head while holding small purple scissors.
Her initial cut pulled my hair, I let out a wail. I felt helpless and weak. I convinced myself the tip of the scissors would find my wound and rip through the sutures. I couldn't control the fear and anxiety.
She finished the trim, I felt bad for worrying. I felt guilty for not trusting her.
"Aimee, you shave it. I've never used one of those before."
It was then that Aimee turned the clippers on. They were loud. My anxiety increased, sweat accumulated.
Before she started, I heard my brother on the phone in the background. He was talking to my dad. He joked about purchasing a toupee for me, he laughed out loud and if you know my brother you know how loud that can be.
Anxiety turned to rage.
"Bad jokes and bad timing. I've heard everything you've said and it's lame," I said.
During my brief diatribe, came brief moments of clarity. I knew it wasn't a big deal, I realized I overreacted but I couldn't get those fleeting thoughts to stick. My brother apologized and left the room. Feelings of rage turned to guilt.
Aimee turned on the clippers. I accused her of getting too close to my staples. Guilt turned back to worry. My worry caused her to cut the cut short. I got up, sad and somber, and walked to the bathroom for a shower.
As the water streamed down my neck, I paid the injury some long overdue respect. Often, I forget how serious this injury is, it must be if a simple haircut turns into an emergency operation, an unsanctioned medical experiment, and I transform into a scared, worried little child.
"Clap your hands everybody...Now everybody clap your hands. We're Lambda Lambda Lambda and Omega Mu...And we come here on stage tonight to do our show for you..." After I finished singing these lines from Revenge Of The Nerds and after doing my best impression of Lamar, I caught myself. Aimee laughed and then asked if I was all right, if I was looped up on Vicodin.
"No, my voluptious vixen, my dazzling damsel, my beautiful bird, I feel the music in my soul."
"You just answered my question," she said.
She was right. Since filling my prescription to ease the sting of the thirteen staples and dozens of stitches on my head and to slow the throbbing from the right side of my face, the pain killer's affect on my personality is evident.
The highs usually show up in song. This morning I found myself singing "On Top Of Old Smokey" while staring into the bathroom mirror. The night before I sang Meatloaf's "Anything" out loud to Aimee before trying it on my dog, Artie. These are the highs when I'm dancing through the living room like Billy Elliot.
The lows are much different. There's no strength for melody, not much strength for anything. There's just enough for brief fits of rage, times when the most insignificant occurrences can set me off.
Yesterday, my mom, in town for my surgery, brought a plate of tacos to my residence on the couch.
"Remember your jaw, take small bites," she said trying to remind me about my swollen and aching jaw.
As I took my first bite, AImee told me again to take small bites. She said the one I took was too big. I snapped.
"I don't want to hear it," I yelled. "I know how to eat. I know what hurts and what doesn't. I'm the one that feels the pain, not you."
She fell silent and stared down at her computer screen. Minutes later, after I regained some of the energy lost during my outrage, I apologized.
"It's okay, I could tell you were crashing," she said.
Crashing is right. And crashing for me is unavoidable, something I can't help. Too bad for her, for my brother, and for my mom, they have to be strapped in the front seat for impact.
"Well, I woke up this morning and my dog had torn my whole closet apart," said one trauma nurse to two of her colleagues from the other side of the curtain. "Worst of all, she completely ripped up my new Anthropology sweater. I just bought it too and their stuff is expensive."
"Yeah, well my dog put me in a coma," I said. "In the scheme of things, I'd say you made it out all right."
The nurses laughed and then peeked behind the curtain and apologized. I told them I couldn't help myself. Though, looking back it's disturbing to think about the things we spend our time worrying over; those small inconveniences, our little complaints in life, whether that be the chewed up sweater, or the mess the wife makes when she gets home from work, they take up too much of our existence, at least they took up too much of mine before the fall. These complaints are normal, I know, and I have had these thoughts before, telling myself that change is needed. However, hearing the complaint from inside the Intensive Care Unit has me unnerved and upset, not at the nurse or her complaints but at the human condition, the fact that we need a catastrophe before we call upon change.
It's just one of my thoughts from my recent hospital stay. Only four days after leaving, the experience stays with me, a result from an unstable and damaged mind.
And if I'm not thinking about my recent surgery, I'm thinking about the interstate of pain racing from my forehead to behind my right ear. And if not for that, my family is measuring the swelling in my right eye or gaging the bulge in front of my right ear.
There go the complaints again.
Most of all, it's good to be home. Sure, my life now consists of dozing in and out of sleep during bad TV programs, or while watching movies, most of which I have already seen. And yes, much of my day is now dictated by the highs and lows brought on by Vicodin, or is spent sipping on hot tea from the Beatles mug my sister bought for me. And although, my head resembles the head of the deformed Fratelli brother, Sloth, from the movie Goonies, at least I'm home, the only place where change can truly begin.
"Senora, respires profundo. Senora, respires. Doctor, we have an emergency at bed 2. The patient stopped breathing."
Bed two was next to bed one, my bed. I rubbed my aching and swollen head, reminding myself to stay away from the right side of my head, where dozens of stitches and several staples stretched my scalp over my newly inserted bone flap. I looked down at the small, plastic bottle half full of blood and puss draped over my right shoulder. A clear plastic tube fed the bottle and ran from the back of my head where my neurosurgeon had inserted a drain inside my scalp.
"Maam, breathe now, maam. We need to intubate."
I watched as doctors and nurses rush towards the woman's bed. Another pain shot through my bandaged head. During the next ten minutes the sounds of the room came from bed two. I listened to staff talk about breathing tubes and the need to perform a tracheotomy and I heard the slurping sound as nurses sucked the saliva and phlegm from the woman's throat.
Tears welled up in my eyes; not just for the woman next to me and her family but for my family as well. It was only a month and a half earlier when they had to watch doctors and nurses scramble towards my bed in the same room, in the same manner, and heard the same sounds.
Moments later, the commotion disappeared. Doctors and nurses intubated the woman and a ventilator pumped oxygen into her lungs. Not long after, my nurse arrived at my bedside pushing a wheelchair; it was time for my transfer from the Intensive Care Unit to the upstairs trauma floor.
I was happy to leave the ICU. The night before had been a sleepless one. The constant beeps from heart monitors, the discomfort from my catheter, and the pain in my head kept me from sleeping. By five in the morning, I had already had a CAT-scan. The scan showed no swelling and no hemorrhaging; the operation was a success.
Upstairs, on the trauma floor, nurses and doctors recognized me. They all were surprised by my condition, that I was able to walk and talk. Standing near the nurses desk was the older Mexican man whom I shared a room with after waking from my coma. Neither of us remembered one another. Aimee, however, remembered him well. He too, had injured his brain. He too, had a scar from his forehead to the back of his ear. He, however, appeared in a near vegetative state, standing motionless, confused in a leather jacket and jeans, leaning against the desk. He had been in the hospital the entire time. I felt sorry for him, I felt fortunate for my condition, my head ached, the plastic bottle on my right shoulder dangling, tugging at the stitch that held the drain inside my scalp.
Soon after nurses worried over my irregular heartbeat. More blood was collected, another EKG performed. I couldn't stop from thinking about my mortality, my poor health.
"Please, one organ at a time," I said to them as they ripped the tape from my chest where the leads for the EKG were placed.
Two hours later, I was asleep. The pain pills had done their job.
Minutes after I awoke, my doctor appeared outside my door. He stood over me as I sat on the bed.
"Okay, this is going to sting a bit," he said before cutting the stitch from the back of my head and pulled the drain from my scalp.
"Another sting coming," he said as he stitched up the hole in my head where the drain had been placed.
"All right, you can leave today. Leave the bandage on your head, no showers for two days and call my office to schedule a check-up."
Forty minutes later, a nurse wheeled me out of the hospital with a fresh wound on my head and a swollen mind, and fresh hopes for recovery.
The countdown to the reverse Craniectomy is on. Three days and counting until doctors attempt to replace the four by five inch piece of skull they cut from my head to allow for my brain to swell. As the surgery nears, my anxiety grows and there is little that can be done to stop it.
I do have one way to slow it down. During the next three days I'm going to focus on the good that may come from the surgery. The first one that comes to my damaged mind; losing my maroon helmet, the replica of a 1930's leather football helmet that I have worn since I woke from my coma last month.
Wearing the helmet was always difficult to accept. Aimee, family members, doctors and nurses all told me that I couldn't go anywhere without it and that includes the ten step walk to the bathroom. I agreed, of course, not without a fight but I agreed.
In the hospital, or at home, the helmet didn't bother me. Outside in public, however, is a different story. I see people looking out of the corner of their eyes as they walk by. I can almost see the wheels in their head spinning, looking for an explanation. Some scan the length of my body for more clues. Is it fashion? They ask themselves. Is this the new look?
Some people aren't silent about their curiosity and some can't help themselves from making fun of my new fashion statement. After lunch the other day, Aimee and I made our way back to the car. From a distance I saw a middle aged man on a bike pedaling towards us. The closer he got, the more details I picked up. His chest-length red hair was dirty, unkempt. In his left arm he held two 40-ounce beer bottles. His bike swerved from the side of the road into the middle of the quiet residential city street and he didn't seem to care. I could feel his stare as he approached. I looked him in the eyes. "What are you in town for the rodeo?" He yelled in a deep, raspy voice. "Enjoy the rodeo, yeehaw."
No longer having an emotional filter, I reacted. "Yeah, go drink yourself to death, asshole."
I saw the handlebars move. The drunkard started to turn around. Not a second later he changed his mind, straightening out and riding off.
Another reason I'm ready to shed my plastic skull for good; the other day in physical therapy my therapist said I could remove my helmet while I stretched out on a blue floor mat. I took it off. A few seconds later I caught her staring at the indentation in my head, her mouth agape. I didn't think much of it, until later, when I was at home in my chair. I took my helmet off and seconds later Aimee asked where that strange bump on my head came from. I didn't know. Staring into the mirror isn't one of my favorite hobbies anymore. She dug into her purse and grabbed a small mirror and handed it to me. I looked at the top of my head. The bump, the reason for the stare, was not an infected scar from where doctors has stapled my scalp together, instead it was a massive whitehead, one so big, the skin around my head was blood red. I looked at the inside of my helmet, my giant pimple was directly where I put my finger before placing it on my head.
The helmet struck again while I was on a community outing during rehab. We were taken to a large, crowded, big box Swedish furniture store. I was given a list of tasks to perform. I was asked to count the number of sofas, bookcases, and end tables and record the price range. I proceeded without giving it much thought. Halfway into the task, I caught myself, it felt like I was having an outer body experience. There I was standing in the center aisle wearing a maroon helmet, moving my lips and pointing to each of the 84 couches on display. I looked like Dustin Hoffman's character Ray, in Rainman. Shoppers walked around me. Kids stared at me. Some reached for their parents hand as they passed.
There are other stories to tell but I think the point has been made; wearing a helmet every second of the day gets old and because of that I am willing to fight this anxiety and go into the surgery room with a smile on my face. I just hope I don't wake up with the helmet by my side.
Everyday the same questions rattle through her mind: "How are you feeling? Do you have a headache? Are you hungry? Can I get you anything?"
And everyday the same concerns fill her day, concerns about seizures, about the swelling in my brain, about rehab, about hemorrhages, soreness, depression, and fatigue, about me not getting enough rest.
Every moment for the past two months, her mind has been occupied with worry, stressing over my damaged brain and frail body.
Of course, there's also work to be done, money to be made. She often goes late into the night, staring at the computer screen, editing pictures and sending emails. Throw in chores around the house, heading to the grocery store for fruit, leaving little time for herself, for those selfish thoughts, the kind that everyone needs to ponder, the kind that makes us into individuals.
In the past month, I have seen her cry just twice, this for a person who tears up when she sees an elderly man show love for his family, when she sees an animal without a home, the list can go on forever.
And throughout this whole experience, she has suppressed her emotions as a way to show strength, to show control, all for my sake.
Last night, a small fraction of those emotions surfaced. She was hungry, tired, and stressed. There was a knock on the front door. Our dinner had arrived. I remained seated as she answered the door and made the transaction. She walked back towards the kitchen flustered, arms loaded with a pizza box and plastic bags full of food.
"I don't know what your doing but I'm eating," she said. I could see the frustration in her eyes. The look sent me back to before the fall when I cared more for myself, when I took things for granted, and let her do all the work.
I stood up, put my helmet on and walked towards her.
"Are you all right," I said.
"No, I have chores, work, we have to start paying these medical bills, I'm hungry..."
The conductor in my frontal lobe still unconscious, I reacted.
"What do you want me to do? I can't handle this now. I'm worried about my surgery, about going back to that hospital. Is this what you really want to do? My brain is damaged and I can't handle this."
She looked at me, her eyes welled up from tears, and she apologized. I understood why she was worried, but I couldn't forgive her, my mind wouldn't let me forget. I get that I am not the only one that has had to deal with this. I just couldn't fight the sadness and stress I felt.
We sat down for dinner. Several times she looked in my direction, her eyes full of tears. She apologized each time she looked my way and each time I was silent.
After dinner I left the living room to write. She went outside for a glass of wine and a smoke. I sat in my office, computer in my lap, staring at the wall. Tears streamed down my face, not because of my condition but for putting the woman I love in this position, and because I am still not able to show how much I appreciate her, how much I love her. And while the reason for my ungrateful attitude is now strictly physiological, nothing to do with selfishness, it is still there and it weighs heavy on this swollen mind.
I've written about the fatigue that results from Traumatic Brain Injury, actually I've written about it several times and I have discussed the feeling thousands of other times during the past month. I've explained how debilitating it is, how it sucks every living thing out of me, like a leech that feeds on emotions, initiation, and desire. I've posted pictures when the leech is fat and happy and I am left spent and sad. Those pictures show drooping eyes, a pulsating bulge on the right side of my face flanked by the crater-like indentation from where my skull was removed. This is the reality of recovery; the pain, the fatigue, the depression, all unfortunate parts of the painful experience.
Fatigue, my unwanted companion, knocks on my proverbial door often. In the morning before rehab it knocks loudest, or before I need to perform some remedial task like getting a fresh cup of tea, filling up my water, or just walking a few steps to the bathroom to have a piss. The level of the knock changes, at times its louder than others, at times softer.
Rarely does the knock begin days before the event. I say rarely because the knock has been loud and steady, rattling my mind, sending tremors into my arms and fingertips for days now. I don't need a cup of tea, or a glass of water, and I just took a piss a few minutes back. The knock is in anticipation of my upcoming visit back to the operating room, back to the intensive care unit where I nearly died on more than one occasion, where I stabbed a nurse with my IV after tearing it from my right arm.
My visit will consist of doctors reattaching the missing piece of my skull; a time to get my head back together. Today the date was confirmed. On Tuesday morning at five a.m., I will stumble back through the hospital doors and back into an uncomfortable hospital bed for a two day visit full of surgery, pain, and worry.
My neurosurgeon, therapists, all tell me the hour and a half long operation is routine, nothing to stress over. Sure, there's a risk of a brain hemorrhage, of infection, but what doesn't have some element of risk. Oddly enough, the risk doesn't bother me. Going back to the ICU does. What bothers me most, however; I can't stop the knocking in my head. I can't control my nerves, my anxiety. I feel as if I unable to prepare for the surgery, for more pain, for upcoming bills, rehabilitation. Most of all, I am scared that I've lost all rational thought. These anxieties are what fuels the knocking in my head, they are the heartbeat of the leech and there's nothing I can do to stop it from banging down my door. The saddest part is, my brain created that leech, it hatched from my brain and it's my mind that will need to destroy it.
"Your particular injury is what we call a focal injury, and it is mainly to the right side of the frontal lobe," the doctor said during our last meeting. "It explains your problems with spatial orientation, with adapting to new situations, and with initiation," she added.
The list went on and on.
"You see, the frontal lobe is like the conductor of a symphony," she continued. "It also acts as your filter for emotions, for irritability, depression, aggravation, all emotions."
It was then that everything began to make sense. I understand symptoms from an injury like this are widespread but for some reason, apart from the fatigue and the depression, which she said will worsen with time, I thought they would be more physical. I was wrong.
As the doctor continued, I started to think about my missing filter. Immediately, a vivid image came to mind as I sat staring at my neurologist as she spoke. The vision sent me back in time, back to my home. I was sitting in my chair, my maroon helmet resting at my side. I resembled the character in Batman, Two-Face. The left side of my face was its normal good looking face, the right side uneven and droopy. A large bulge full of brain fluid and severed tendons protruded out in front of my right ear. As I sat in a daze, in front of the television, the cat jumped up on the new sofa: "Get off now," I screamed as if some stranger had tackled me from behind. Not one second later, I returned to my slow self, apologizing to the cat and to Aimee who looked at me speechless, her big brown eyes open and not blinking.
A dozen other instances flashed into my disfigured head. My strong urge to break down and cry with each new emotion. Tears welled in my eyes as I thanked Aimee for standing by my side, whispering I love you in my ear as I lay unconscious. Or, when I thanked my family for all their support. My eyes welled up instantly when an old friend, a best friend at one time, a nemesis at another time, broke years of silence by writing a few brief sentences in a get well soon card. Visions of my friend and I in past years flooded my mind while tears flooded my eyes.
There are so many more instances. Close friends from far away places have nearly sent me running to the bathroom for tissue, even though running is not an option.
It happened again today when a friend sent a message, complimenting me on my speedy recovery. And now, as I sit here writing this, my vision is blurred yet again from tears. I picture that frontal lobe conductor lying in a hospital bed, unresponsive, disfigured, and swollen. I picture a tube running into his throat from where they sliced through his skin and into his trachea, the only thing that keeps him from dying. I try my best to wake him. I tell him things will change. I repeat the changes over and over. I know there's nothing I can say. He'll come back when he's ready, hopefully before I run out of tears.
I don't have many pictures of myself from when I was nine into my early twenties. The youngest out of four, by the time I was nine, my brothers and sisters were either out of the house, or were caught up in teenage angst. Throw in the fact that my family was never the type of clan to huddle up together and smile for the camera.
I took that same approach when I left home to attend a prestigious community college in Tampa, Florida. From the time I was seventeen to my mid-twenties, I held onto one photo of myself, in front of my banged up maroon Chevy Corsica, wearing baggie jeans, a Grey tee shirt and bulky skate shoes.
That changed when I finally convinced Aimee, after ten years of pursuit, that I was the right one for her. Still to this day I have now idea why it took her so long but that's a different entry for a different day.
Now, after eight years together and two years of marriage, I witnessed Aimee go from a student of photojournalism to an amazing photographer whose one true desire is to capture life's images, the good and the bad. Needless to say, I have more pictures of myself from the last eight years than I have from my first twenty-five years.
Yesterday morning I found myself plagued by the same symptoms that are there every morning. The thirty squats while holding a two pound weight I had done the day before turned my atrophied quadriceps into two painfully unmovable objects. It hurt to walk and it killed me to get out of bed. I took it in stride, scratch that, I took it in shuffle and tried not to focus on the pain. My old brother in-law called to wish me well and bombarded me with compliments. I hung up the phone feeling good about my condition.
Later, I wrote a little. After finishing, I went online to check my email. Not paying much attention to what I was I was doing, apparently my focus has suffered from the damage inflicted to my frontal lobe and from the swelling of the brain after the fall, I clicked on the newest email and saw a photo of someone lying in a hospital bed. The man's head was turned to the left, half of his head was shaved, fresh, red puffy sutures ran from his forehead to behind the ear. Multiple tubes were stuffed down his throat, running into his nose. Something looked familiar. I stared at the picture for five seconds before I realized the injured man was me. Aimee had taken the snapshot while I was in the coma. Nurses and doctors had just informed her that I wasn't "out of the woods" so she snapped the photo in response, a programmed reaction.
A few seconds after realizing I was the subject in the photo, I let out a shriek. Aimee rushed in to see what was wrong. She apologized. I held my head in my palm and told her it wasn't her fault. I said it came unexpected and it hit me hard. I tried to refocus and go on with my day. An hour later, I couldn't get the image out of my head. It would appear in my mind and stay there, like a Vietnam vet's flashback from the war. Each detail was more in focus than the last time. Each time the swelling in my head increased, the sutures grew larger. I had no control over my thoughts. Soon after, depression struck and frustration mounted, lasting through the day and into the night. I couldn't talk. I had an irresistible urge to cry, to wail like a baby. All further evidence that this recovery will take time. It proved to me that I have yet to grasp the full experience and am unable to cope with the unexpected. One positive thing about the photo, in spite of the gory details, at least it captured the good side of my profile.
I've learned a few things since this whole ordeal transpired. One of those lessons learned; I have to take the good with the bad. On Wednesday, I met with my neurologist to find out how I scored on my neuro-psych tests. While taking those tests, I was disappointed in my performance. It took me four tries to remember twelve words, I couldn't remember images easily, my hands trembled slightly as I tried to align small metal pegs into position. I convinced myself that my condition was deteriorating. I felt helpless.
When I went into see my neurologist that day, I prepared myself for the worst. I must have looked like I had a major case of Restless Leg Syndrome as I sat in my chair listening to information about my injury, blunt trauma to the frontal lobe of my brain. Then came the results. Surprisingly, I scored above average among a peer group of 100 people with the same age and similar education. I was stunned. My leg stopped bouncing for a split second. Finally the proof I needed that I was a genius before the fall. And then came the bad news. My leg started to bounce. I came in fourth from the bottom in visual memory. Also, my ability to adapt to new situations, to "switch gears" was affected from the swelling in my brain. My neurologist said these were things that would probably return, though there is no definite way of knowing for sure. My leg bounced faster. Minutes later, out meeting ended.
A few days later, during another meeting, my therapist asked me some personal questions. The bounce in my leg returned. She asked whether I was anxious and why. She asked if I had a problem with anxiety in the past. I told her yes, that I've always been a bit anxious, but it was never serious. I never had any panic attacks, just a bleeding ulcer. Later she told me she wanted to enroll me in classes to deal with anxiety. I agreed, reluctantly, my leg bouncing the entire time.
That's the thing about this condition, about these evaluations. There's no accounting for the past. Looking back, I was never able to remember twelve words like the ones given to me during the tests, blame it on past drug use, or my poor focus. Also, I was always anxious. And in spite of my amazing intelligence, I never scored high on tests. These things aren't direct results from the fall, though, they might have worsened from it, these characteristics were always there and it appears to me they always will be. After leaving rehab that day, I started thinking about ranking in the fourth percentile and why I considered it such bad news. I began to realize; in some subjects I never was much better than the bottom of the pack.
I've never been a spiritual person. I haven't embarked on that journey for inner peace that many friends have set out on. For some, that quest lasted months, for others it ended halfway through the first chapter of a Deepak Chopra book.
I never decided to go down that path. Enlightenment couldn't be found in some book one could find on a sale rack at a big box store, I thought, and it wasn't something a person can find, like one finds a lucky penny on the sidewalk. I believed enlightenment was the same as giving up. It was accepting the illusion one creates, about their surroundings, about the people closest to them. And while some point to the teachings of Buddha, Jesus, Mohammed, or look to the Torah for guidance, others look to authors such as Chopra, and Eckhart Tolle. Whatever works for that individual is fine by me.
Since the fall, the coma, and, well, you know the rest, my outlook has changed slightly, let me repeat, slightly. I realized I was quick to judge and quick to generalize. I discovered it wasn't my philosophy that prevented me from searching for inner peace, it was my impatience in everyday life. More than anything, it was my tendency to look at others before looking at myself.
So, when my neighbor dropped off Eckhart Tolle's "The Power Of Now" for me to listen to, I was grateful. I thought it might be the inspiration I needed to start on that journey that I was too scared to consider in the past. I played the first disc, like a teenage girl plays the newest Jonas Brothers album. After ten minutes, my old habits returned; my new outlook tossed aside, instead of finding enlightenment, I found myself critiquing Tolle's approach.
"Eckhart Tolle, it should be Eckhart Tool," I said.
His belief that a person needs to detach themselves from their brain, to not give the brain too much control is ludicrous and is the wrong thing to hear when you're fresh out of the ICU from traumatic brain injury. The brain is you, there is no separation. The "voices" Tolle refers to inside a persons head aren't different identities, they are the same voice saying different things from the same mind.
Tolle then says that a person should live in the moment, not allowing their egos to get in the way, to live in the present. Granted , some people are unable to control their compulsions and some people do give way to their ego. But isn't that what Tolle is doing. After all, anyone who thinks they have the knowledge to guide people towards enlightenment has to have one massive ego.
I'll keep listening, trying not to let my inner critic take over, as it has throughout my entire life.
I can't say I wasn't warned. Doctors told me that as the brain heals and the neurons reconnect additional symptoms will appear. Like everything else they said, I ignored it. At the time I felt great, sure, a bit groggy. At the time I was unwilling to accept the fact that the reason I felt so good was my brain and body were not connected. I can always blame my condition, the hard-headedness (sorry I had to do it) it has brought, or, I can admit I've always been unwilling, reluctant to hear the cold, hard facts, especially when it pertains to me.
I discovered this at rehab, while taking a vision test. Surprisingly, my vision had improved since my fall. Despite a weakness in my right eye, I had near perfect vision. Then came a different test. One where an arrow was placed above a number and I had to indicate which number the arrow was pointing to. Whenever the arrow was on the right side of the screen, it drifted slowly across the screen.
"It's above thirteen," I said. "Wait, it's moving... ok, it's between thirteen and fourteen."
The arrow continued to drift. I asked if the machine was broken. I asked if the therapist was administering the test wrong. Neither was correct. The drift in my right eye indicated that I had a mild case of Exophoria, a condition where one eye isn't linked up to the other. More tests led to more proof. I was told the condition was minor and as the muscles gain strength, the affliction most likely will disappear.
I should be thankful, after all, minor is a great word for a someone with an injured brain, instead, I am disappointed. I'm working hard to return to my old self and not focusing on my recovery, nor am I concentrating on implementing the life changes that I promised to make. Admittedly, change is harder than it used to be, and it was nearly impossible before.
Now, I have less control over my mind. I find myself resorting back to my old ways. During evaluations, I'm more concerned about convincing the therapist I am smart, funny, and have a healthy brain than I am about the task at hand. I answer questions quickly and crack jokes during the test and brush off each incorrect answer like it was a high school exam. The problem is, I know what I'm doing, I just can't control that petty instinct I've had my entire life to make a good impression. I've learned it is not just my right eye that is adrift, it is also my mind, and it has been for 33 years.