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Copyright 2017 Arash Bayatmakou


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ISBN 978-0-69294-776-0



http://www.arashrecovery.com



LITTLE BIG STEPS

A Life–Changing Injury and the Inspirational Journey to Overcome the Odds






by Arash Bayatmakou





Contents


Introduction

1. An Operation, a Sponge, and a Very Long Night

2. Slow Rolling in an Ambulance

3. Sitting Tall, Flying High Like a Kite, and Choosing to Live

4. Diagnosis and Prognosis

5. Expectations, Ambitions, and Goals

6. Nancy

7. Brita

8. Valentine and Jana

9. Don’t Sweat It

10. Wiggle, Wiggle Little Toe

11. Death, Rebirth, and Recovery

12. My Prison Sentence

13. A Jedi Master in Maui

14. Southwest Road Trip

15. How I Came to Be Aquaman

16. Return to the Jedi

17. A Crazy Idea

18. Stand and Deliver

Epilogue


Acknowledgments



I can confidently say that all of my friends and family in some way, shape, or form helped to make this happen, and I send my gratitude to each and every one of you in my incredible community across the globe. Your friendships and love have supported me through the highest highs and lowest lows, and I’m forever grateful to all of you. I want to highlight a few people who specifically helped in the actual process of writing and publishing my book and empowered me to complete this creative journey.

First and foremost, I thank my wife Brita who has stuck with me from the beginning, endured every horror of this injury and recovery with me, and has never for one second flinched in her support and commitment to me. You listened to me brainstorm each chapter, read and revised and helped me remember important details, and always had faith in me to pursue this endeavor.

From the bottom of my heart, I thank my parents Minoo and Shahin, from whom I have learned valuable lessons throughout my life and continue to learn from every single day. I’m honored to know I’ve inherited your strength, love, passion, and dedication to life, all qualities that were essential to the publication of this book.

I want to thank my editor Jude Berman who patiently worked with me through every step of this process and enabled me to transform, elevate, and improve my writing dramatically from when I started this project. Every time I thought a chapter was done, she pushed me further and encouraged me to go back in, revise again, and make it even better.

I’m grateful for all the readers of my blog over the last five years. The idea of writing this book was initiated by your comments and feedback to my posts. If I hadn’t known that my perspectives and stories were interesting and impactful to you, I would have not have taken on the monumental task of writing this memoir. Consider yourselves my first draft editors and reviewers.

I owe a special thanks to David Nihill who apart from being an incredibly supportive friend, has basically acted as my book consultant, advisor, and literary agent all in one. Navigating the book writing, publishing, and marketing process is incredibly difficult, but I had a secret weapon in David who had numerous conversations with me, offered endless amounts of advice, and on whom I could always count for honest and helpful insight.

Thank you.



Introduction



I didn’t want to write this book. I really didn’t.

I never expected to have my entire life turned upside down, experience a devastating injury, or abandon a body that had always been great to me. Although the early years of my childhood were filled with unpredictability and consistent change, the first three decades of my life were pretty incredible. I always had a supportive and loving family who gave me every opportunity to succeed.

I was born in Iran, but left as an infant when my parents decided to escape a difficult political climate and seek a better life elsewhere. This resulted in a six-year journey across the planet, taking me to four different countries and a dozen different housing situations. I learned three languages as a child. By the time we moved to California, I was seven-years-old and no stranger to new experiences and big life changes. Adapting to new countries, cities, languages, communities, schools, and friends had become just another part of my childhood, and I assumed it would prepare me to encounter practically any significant life change in the future.

My parents instilled a love of nature and the outdoors in me from a young age. Camping in Yosemite and the Sierras of California, swimming in Lake Tahoe, and going on Sunday bike rides with my father were unforgettable experiences that shaped my pursuits as an adult. This love of nature—combined with me attempting to play every sport under the sun—created a deep love for athletics and physical activity. It also cultivated in me a profound respect for the incredible opportunities good health could afford. As such, I maintained a commitment to remain physically active throughout my life. Travelling the world, enjoying nature, achieving athletic accomplishments, and living a healthy life were all made possible by a consistent appreciation for my body’s abilities.

And then, in one instant… it all changed.

Yes, it sounds cliché, but there’s no other way to describe it. What started out as an ordinary summer Saturday turned into an infamous night I will never forget, and whose impact I will never escape.

I didn’t know a thing about spinal cord injury before I woke up immobile in the hospital and was told I was very lucky to be alive. The doctors showed me X-rays of my broken spine, and of the vertebrae in my neck, which had exploded into tiny pieces. They explained that due to the severe impact to my spinal cord, the damage was irreversible. My life would never be the same. They said I had lost many functions in my body that I would never regain; that the finality of the injury was inevitable and unchangeable. And they told me that the best thing I could do was to accept and adapt to my new reality as quickly and wholeheartedly as possible. The body I had known, enjoyed, worshipped, and taken great care of, was now—literally and figuratively—broken.

One of the most devastating aspects of a spinal cord injury is the unpredictability of the person’s ability to recover. Truly, no two injuries are the same. I’ve met dozens of people who broke the same vertebrae in their neck as I did, and they all have their own unique physical limitations and wildly varying levels of function, or lack thereof. The unifying theme I noticed for all these people is the negativity and pessimism they encountered with medical staff, especially in the prognosis and initial stages of their recovery. Neither the quality of care, nor the specific insurance provider, nor the geographic location of the injury and ensuing care seems to matter when it comes to the medical establishment’s approach to spinal cord injury recovery.

The common attitude among most surgeons, doctors, and neurological experts is that once the spinal cord has been injured, the damage is done and the expectations for healing are slim to none. Moreover, the prevalent—if not ubiquitous—thinking is that whatever healing might occur will conclude within six months or a year; two years if you’re lucky. Therefore, those of us who suffer a spinal cord injury find ourselves faced with a ticking time clock that only makes recovery more challenging and anxiety producing.

I always assumed that living in a wealthy country, with leading research institutions and access to medical innovations and technological breakthroughs, would ensure a nuanced and sophisticated approach to any medical condition or injury. It was a rude awakening to be told by medical personnel with great conviction and certainty what my body would be able—and more significantly, unable—to do in the future. The time frame I was given for my recovery seemed surprisingly arbitrary, and I began to question it. Why would my body stop trying to repair and improve itself after a year? Couldn’t other factors, such as my overall health and my commitment to improve influence the projected potential for recovery? What about alternative approaches or treatments? Why did there have to be a prognosis at all; why couldn’t doctors embrace the inherent ambiguity of the situation and simply admit they did not know?

Early on after my injury, these questions plagued me. I was infuriated by the widespread negativity I encountered from so-called experts. I began speaking to other people with spinal cord injuries to see if they shared that experience. Two friends—one an experienced researcher—helped me create a comprehensive survey, which I sent to as many people with spinal cord injuries as I could find, all across the country and even some internationally. After reading the sixty-three survey responses and recounting the numerous conversations I had with people in-person, I realized that virtually all had dealt with the same negative attitude. They had been persuaded to reduce—if not eliminate—their expectations and tame their desire for a significantly improved quality of life.

This confirmed to me that committing to my recovery was about more than just my physical condition and how much or little I could improve. It was about challenging a prevailing way of thinking that was extinguishing hope for the people who, in their most vulnerable time, needed it most. It broke my heart to be given so little encouragement at the prospect of regaining function in my body, and it broke my heart again every time I heard someone tell me the same thing. So I embarked on my journey to seek answers to my lingering questions, to explore the true potential of my body’s capabilities, and to break beyond the limits and boundaries that had been imposed upon me.


***


Life after a devastating injury is complicated and eventful, to say the least. I am often overwhelmed when I look back on my experiences, especially those in the initial months after my injury: interactions with doctors and medical professionals, conversations with family and friends, solitary moments contemplating my situation, the breakthroughs and the setbacks, the discoveries about an unfamiliar body, and the daily fight to survive and slowly put back together the pieces of my life.

From the beginning, I recognized the significance of every step along my path of recovery. Beginning during my first days in the hospital, I took meticulous notes of not just my experience and daily activities, but also of my deepest feelings, fears, thoughts, and expectations at each moment. My family took videos and photos of every hospital room and each physical therapy gym. Even when I did not yet have the strength or hand function to write or type, I recorded video journals and audio notes. I started writing a blog four months after my injury, in which I shared the details of my experience. I continue to write my blog to this day.

I used many of my recorded memories to help me write this book—although some of the videos are still too painful for me to watch. In fact, many of my memories seem surreal and dreamlike now, as if I could not possibly have lived through them. While I am grateful to have so many detailed recollections, many of them don’t seem interesting to me anymore. More importantly, many would likely not be interesting to you, the reader. For this reason, although my book follows a chronological path, I have chosen not to focus on a sequential retelling of the details of each and every week or month following my injury. Instead, I focus on the moments, interactions, breakthroughs, challenges, and triumphs that capture the essence of my journey.

Each chapter explores one part of my complicated road to recovery as I seek to achieve what I was told was unachievable. I commit myself immediately to the ultimate goal of getting back on my feet and to doing everything in my power to work toward that goal. Yet, the implications of my injury extend beyond my own experience. Every chapter illustrates how encountering the unexpected—and finding ways to move forward—affects my family, friends, and loved ones. I offer these lessons because I believe they will resonate with readers who face a similar journey.

I have changed the names of some individuals and identifying details in their stories in an effort to maintain privacy, but everything else I share is accurate and genuine. My intention is not to take a devastating situation and paint it in a positive light for the sake of appearing happy or inspiring you through platitudes or falsehoods. Neither do I want to systematically describe the suffering, misery, and adversity I went through and chronicle the reasons a life-changing injury is so difficult and disheartening. There are plenty of other memoirs with such narratives. Rather, my intention is to share my honest account of a situation no one expects to encounter: having life transformed in one split second; dealing with the repercussions that follow; and navigating through life with an entirely different body, mind, and perspective.

I hope you enjoy my story.



1.

An Operation, a Sponge, and a Very Long Night



It’s 7 pm, and the surgery is over. I’ve been carved up like a jack-o-lantern, had my spine completely reconstructed, and am just now waking up in bed and remembering when this all started.

It was a few minutes before noon when the nurse tilted her head in the doorway and made the announcement: “The surgeon is ready. It’s time to go, Arash.” And with that, this strangest of transformations of my body began. I was already losing consciousness as they rolled me down a series of hallways, on the same ICU bed I had inhabited since arriving in the frenzied ambulance two days earlier.

I have no idea what they did to me for those seven hours, no conception of what my body endured in an operation in which I was told there was a real possibility of serious complications, even death. I didn’t comprehend the strength of the anesthetics, of the medications they used to keep me unconscious and numb, yet alive. They sliced open my body just inches below my brain and went to work, painstakingly repairing what had been injured in less than a second during my three-story fall onto concrete—a result of being locked out of a friend’s apartment and deciding to try to climb in through the balcony and save the day.

I never got a preview of the titanium rods and screws before they were drilled into my damaged spine, allowing me to have a functional neck again, and promising to remain a part of my physiology for the rest of my life. Ultimately, I didn’t have a choice. For all of human history, until just a couple of decades earlier, a spinal cord injury such as mine would have resulted in death if not in the first few hours after the injury, then within days or weeks.

The room is unusually empty when I first open my eyes. I’m holding the trusty red squeeze ball in my right hand, and the metal halo on my head has been replaced with a cumbersome brace surrounding my entire neck, stabilizing my head from my ears down to my sternum. I can see the various screens and monitors in my peripheral vision, beeping and flashing, with straight lines and curved, dancing up and down across a blue background, relaying numbers unfamiliar to me but critical to my survival.

I can hear the muddled conversations of my parents in an adjoining room as they talk to the nurses and medical staff. I know they’re talking about the surgery, restating and explaining the steps, like coaches reviewing a game, analyzing their players’ strengths and shortcomings. The surgeon, Dr. Chang, is answering their questions now, speaking softly but with great confidence. Although they’re out of my sight, I can sense my parents’ hesitant nods. I can imagine their fear-stricken faces as they hear the details of the operation.

My mouth is dry. Extremely, inexplicably, painfully dry.

I glance around the room a few times, trying to fight my way through the haze created by all the medication that’s flowing through my body, and then they all walk in together. The surgeon stands to my left, my parents are just behind him, and the assistants look on from the foot of my bed.

Dr. Chang says, “The surgery went very well, Arash. It took a while, but everything went smoothly.”

Because I feel like I’ve been hit by an eighteen-wheeler and can barely move any part of my body, it’s difficult to comprehend what this means.

Dr. Chang acknowledges my silence and continues. “We had to go in from both the front and back of your neck. Before we could rebuild your spine, we had to clean out all the small pieces of broken bone. After we finished in the front, we made a larger incision in the back of your neck and fused together your two broken vertebrae with the healthy vertebrae above and below. So you have titanium rods stabilizing your neck from C4 through C7. As I said, it was a time-consuming process and took us a little longer than expected, but I’m happy with the results.”

This moment, like all others during my time in the ICU, feels completely surreal. We can’t be talking about my neck, can we? It isn’t my body strapped to a bed, unable to move? This entire conversation about broken vertebrae and titanium rods couldn’t possibly apply to me. There is no way any of this is happening, right?

I want to scream at Dr. Chang, plead my case and tell him he’s got the wrong person. I’m the guy who was standing on a 12,000-foot mountain six days ago, with a fifty-pound backpack loaded with extra food to help out my friends who couldn’t carry as much. I’m the guy who bikes all over the city! Who stuffs his backpack with groceries, rides his bike up a steep San Francisco hill, and then carries everything up the three flights of stairs to his apartment. This whole broken neck thing can’t be about me. Now just snap me out of this nightmare, Dr. Chang, and let me get back to my life!

I close my eyes and hope and pray and wish that when I reopen them I’ll be back in my own bed, looking out the bay windows of my bedroom, seeing the Victorians of the Haight-Ashbury and the tall, swaying trees of Golden Gate Park in the distance. I think of the tricks I’ve used to get out of bad dreams in the past: suddenly snapping my head backwards, shifting my glance quickly around my surroundings, trying to run really fast. But none of them give me results now. I open my eyes.

The nightmare continues, and I’m forced to acknowledge the gravity of my situation, to reluctantly accept that this may actually be my existence. I’m suddenly well aware of where I am. The ICU room is still here. My parents, with their swollen, devastated faces, are here, too, desperately trying to hold back their tears. I battle through the numbing fog of the medication and try to comprehend exactly what’s going on.

I finally ask the question most dominant on my mind: “Dr. Chang, will I walk again?”

I half expect Dr. Chang will laugh me off, throw his arm around my shoulder, and insist that I’m crazy to be so worried, that I’ve seen too many movies, that the surgery seems to have given me an unexplainable penchant for being overly dramatic. I assume he will be flabbergasted by the ridiculousness of my question and remind me that it’s an injury, and that like all injuries, it will improve, and I will inevitably recover. He will chastise me and ask what the hell is wrong with me for thinking such inexcusably illogical thoughts.

He sighs. There’s no laughter, no backslapping reassurance that “everything is going to be okay,” no asking why I would ask such a silly and unreasonable question. His eyes glance away for a split second, seemingly searching for a way to lessen the blow, and when they land back on me, he sighs a second time, more heavily.

“Well, it’s tough to say exactly what will happen, and I can’t say about if or when walking may happen, but I think… you may have… a chance of… some kind of recovery.”

He sees the shock and dismay in my face, evident despite the heavy anesthetics still in effect, and he continues: “Look, the spinal cord heals unbelievably slowly. Some people say a centimeter per month, others say slower. You broke your neck, so imagine how long your spinal cord will have to heal before it gets all the way to the bottom.”

He can tell I’m doing the calculations in my head, quickly estimating the number of inches from the base of my skull to my tailbone, dividing that to get the centimeters, then adding up the months. I end up with thirty-five, just shy of three years.

Before I can contemplate how horrifically long that is, he keeps talking. “It’s hard to predict how or what kind of healing you’ll get. You just have to… you know… try to stay positive. And hope for the best.”

That’s it. In that instant, my life has been turned upside down. Everything I’ve ever known about my body, my abilities, my career, and my ambitions is out the window, and replaced with… what? With the assurance that I have a chance at “some kind of recovery?” Or with the fact that the nurses are already referring to me in terms of my physical impairment? Or with the knowledge that I won’t be going back to work this week, that I won’t finish packing up my room in preparation for my much-anticipated move into a new apartment?

The effects from the medication are suddenly overwhelming, preventing me from processing my situation with clarity or integrity. And so I drift off, half asleep, half bewildered that I still haven’t woken up from this terrible nightmare.


***


I open my eyes.

It’s almost dark outside, the final slivers of color from a long-lingering summer sun are still streaking the sky, and the room is quiet. I immediately know I was given another dose of morphine because my entire body feels like it’s floating and my senses are jumbled together into a single, artificially serene, flowing mess of numbness.

My mother enters the room, sees that I’m awake, and quickly comes to my side and holds my hand. “Are you feeling okay?” she asks.

“I’m not sure I know how I’m feeling, Mom.”

She swallows hard, looks down at the ground, then back up at me. Her eyes are red and sunken, the skin on her face barely dry from the consistent, almost clockwork bouts of crying I can tell she’s endured since she showed up at the hospital in a panic three nights earlier. What I put her through is every parent’s worst nightmare: to be woken up at 3 am by a ringing phone, told that your child—your only child in her case—is in critical condition at the hospital and you need to come immediately. But I’m still reeling from the earlier conversation with Dr. Chang, so I can’t allow in the flood of guilt, embarrassment, and shame I otherwise would be feeling.

“Mom, what am I gonna do?”

“Well, they said they have to keep you here for a few more days, and then…”

“No, Mom,” I interrupt her. “I mean, what am I gonna do? You heard what he said about walking, about this injury. Is this for real? He didn’t exactly portray confidence when it came to my recovery. This can’t be happening!”

She squeezes my hand harder and sighs patiently. I can sense her doing her best to fight off the tightening in her throat and the beginning of another round of tears. Yet in those red, swollen eyes, I can also see a familiar surge of strength, dedication, and resilience—qualities that allowed her to make her way out of a small, rural town in Iran; learn three languages at an academic level; earn her PhD; and become a successful professor at UC Berkeley.

“Well, I’m not sure,” she responds. “You’ve worked so hard your entire life to keep your body in great condition. You don’t just rely on your physical capabilities, you enjoy them. Think of what you’ve done in your life and all the places you’ve traveled to, and the trails you’ve hiked, and all of the exploring you’ve done. You’ve accomplished a lot physically, more than most people do in a lifetime. Maybe now you have to think about relying a little less on your physical pursuits, and transition to more mental pursuits, ways you can use your brain and not necessarily your body.”

At first her words sound insensitive and conciliatory, as if she’s dismissing any future possibilities for my physical abilities, but I know her intentions are as loving and positive as they always have been. At no point in my life, not even for a blink of an eye, has my mother been discouraging or doubting of my potential to do anything I want to do. She has never told me to close any doors or to steer my path in a different direction. She has wholeheartedly supported every decision I’ve made, even those she didn’t agree with, because she has complete faith in my conviction and commitment. She’s believed in me, knowing in her heart that I can succeed and flourish at whichever path I choose in life. And I know she believes in me now.

I understand exactly why she just said what she did. She wants to protect me from the unknown, from the unpredictability of recovery from a broken neck and a severely damaged spinal cord. Just hours after surgery, she’s already focusing on what I can do, and thus empowering me. I’m not angry or resentful at her response, and I almost surprise myself with my willingness to accept it.

“At least you still have your brain. That wasn’t taken away from you,” she continues. “I’m so grateful for that.”

I suddenly wonder what this process would be like if my brain had suffered as much as my spine, if my abilities to think and communicate were hindered. I’m flooded with a sense of gratitude, but it only lasts a second before I’m confronted with my miserable dilemma again.

Spinal cord injury. I scan my memory to dig up any information I may have about this condition I’ve only recently learned I have, but I come up with nothing. I try to think of anyone I know who’s been through something I might be able to compare to this. But again, nothing.

My mom is still standing quietly next to my bed, squeezing my hands and looking blankly at the bare wall on the other side of the room. I’m not used to seeing her like this. She’s usually so chatty, so willing to talk to anyone about anything and everything, but she’s strangely stoic now. It’s obvious that she’s still very much in shock and barely holding it together.

She sighs again, leans down, and gives me a soft kiss on the cheek, as more tears start to well up in eyes. “Arash, you’ve always done great things in your life, and this injury will not stop you from continuing to do great things. Just remember that.”


***


The next time I come to, both my parents are in the room, grabbing their belongings and getting ready to leave.

“Arash jaan, we have to go home,” my father mutters softly. Jaan is a common term of endearment in Farsi, my native language. My father rarely says my name without this accompanying word.

The hospital’s official visiting hours end at 9 pm. Unable to move my neck in any way, I force my eyes to glance toward the clock at the edge of my peripheral vision. It’s 10:15 pm. For the second night in a row, the nurses and night shift security guards are being lenient with my family, allowing them to break the rules.

“Okay, Pop. I know. I’ll be okay.” As I speak, I realize again how dry and pasty my mouth is. Now I can barely talk without my tongue feeling as if it’s going to stick to the roof of my mouth.

“Your friend left you his iPad. You can watch something if you get bored.” My father suggests a few shows, then positions it on my tray table. “We’ll be back in the morning. I love you, son.”

“Love you, too, Pop. I’ll be fine,” I say with zero confidence.

Even now, I can’t help wanting to protect my parents from my suffering. I’ve been this way all my life, always shielding any pain or anguish I go through, for fear of causing them too much distress. This comes from being an only child to extremely loving, caring parents. But this time, my attempt to act tough and calm is probably as useless as a paper cocktail umbrella during a downpour.

My parents quietly walk to the door, turning around to glance at me one last time before they enter the brightly lit corridor and head to the elevator.

Now the only thing I can think about is the dryness in my mouth. It’s not just your typical stoner’s cottonmouth, induced by one too many bong hits. It’s excruciatingly dry. Images pop into my head as I contemplate this brutally uncomfortable situation: A tumbleweed in a sauna. Getting blasted by a hundred hair dryers from three inches away.

I tell myself I’m overreacting, that it’s not as bad as it seems, and I just need to toughen up and deal with it. I take a few deep breaths. I feel like a dragon breathing fire.

A man’s voice interrupts my internal struggle. “Arash, I just wanted to come in and say hi.”

A nurse I’ve never seen before kneels next to me. He’s tall and fit, with a warm, gentle face; thin glasses; and a buzz cut of light brown hair. He looks like a cross between a young Bill Gates and a fresh-faced Marine home from duty in Afghanistan.

“My name is RJ. I’ll be helping you tonight. I read in the report that you just had surgery. I’ll let you rest, as I’m sure you must be out of it. Can I get you anything?”

I try to wet my mouth to speak, but my tongue has turned into the offspring of sandpaper and a prickly pear cactus. My gums and lips are crispy and crunchy. A new image comes to mind: an 800-degree Neapolitan pizza oven, crackling and burning, its glowing red embers ready to blast the next thin crust that slides in.

“Water… Could I please have some water, RJ?” I can barely get the words out.

“Bad news, buddy,” he says confidently but gently. “Because they operated on the front and back of your neck, just next to your throat, we have to take precautions. You’re not allowed to swallow anything yet. No food, no liquids. This is standard procedure following this type of surgery. In the morning, the specialist will see you and she’ll determine if you’re ready to eat or drink anything. I gotta finish up my notes outside, but I’ll be available if you need me.”

My heart sinks. I haven’t eaten since arriving at the ICU, relying on the steady stream flowing through one of the numerous tubes connected to my body. But the lack of food isn’t what bothers me. It’s barely 10:30 pm, and the thought of waiting until morning to possibly drink something horrifies me.

RJ recognizes my exasperation and does his best to comfort me before he exits. “You’re not feeling thirsty because of dehydration; it’s because of the medications they used for anesthesia during the operation. Those aren’t your typical drugs; they’re really strong, and the side effects are pretty brutal. But don’t worry: you still have an IV, so you’re okay.”

Leftover ash stuck on the walls of a roaring fireplace. It’s bad enough being laid up in bed, barely able to move my arms and hands, paralyzed through the rest of my body, unable to eat or drink. But on top of so much physical discomfort, to attempt to contemplate the devastation of this injury is too much. I start to feel overwhelmed, and a wave of depression hits me and tosses me in ten directions at once. I try to cry but can’t. The tears won’t come. It seems impossible that any kind of moisture could come out of my body right now. In fact, if I were able to cry, I’d probably try to lick the tears off my own face.

I remind myself of something I’ve taken pride of my entire life: my self-proclaimed high threshold for physical pain and discomfort. I think of all the times I hurt something and fought through it, all the times I was in a physically compromising position but refused to accept defeat and kept going. I recognize that this current situation is a hundred times worse than anything I’ve ever experienced, and I ask myself if I have it in me to be a hundred times more resilient than I’ve ever been.

Unequivocally, the answer is yes.

I decide that I can get through this night. It can’t be that bad. At least the morphine and host of other drugs make it so I can’t feel the excruciating pain I know is pulsing through my entire body. I just have to deal with this desert in my mouth and make it through to the morning. It’s ten, eleven hours hopefully until the specialist comes. I can get there, especially if I can sleep through most of the night.

I give myself a pep talk, take a few deep breaths, try to ignore the strips of Velcro that my tongue and lips have turned into, and close my eyes, determined that sleep will alleviate at least some of this anguish.

Grains of sand in the middle of the scorching Sahara.

Within seconds, my eyes dart open and look at the big analog clock: 10:24 pm. Once more, I try to fall asleep, and to convince myself it’s going to happen. Slumber will save me.

What feels like an hour goes by, and I’m still awake. Tired cigarette butts buried in an overfilled ashtray. I keep my eyes closed for another eternity, doing everything I can to go to sleep. Accepting my unsuccessful attempt for rest and reprieve, I congratulate myself for my efforts, open my eyes and look at the time.

The hands on the clock don’t look much different than when I last checked.

There’s no way. It’s impossible. I was lying there for so long! It must be a mistake. I conclude that another side effect of the medications must be poor vision, and that I’m seeing double or something. I figure RJ is following the ICU’s protocol for treating someone in as vulnerable a state as I’m in, and has been assigned to deal with me, and me only, for better or worse, for his entire shift. That would explain why he rushes in just seconds after I push the call button strapped to my hand.

“RJ, what time is it?” I ask excitedly, assuming a couple of hours have passed since he was last in the room. I intend to explain to him that the big analog clock is broken, that a hospital like this shouldn’t have dysfunctional equipment that could mislead patients.

He looks at me for a moment, seemingly surprised by my question, but responds kindly. “It’s almost 10:30.”

“You’ve got to be kidding me,” I mutter. This is going to be much worse than I thought.

“Try to get some rest, Arash,” he says reassuringly as he disappears through the door.

“I just did!” I call after him. “It didn’t work.”

Searing hot asphalt on a mid-summer day. The frustration in me starts to transform into anger and rage. I force myself to take another deep breath and accept that if sleep won’t be my escape, then maybe mindless entertainment will do the trick. I turn on the iPad resting on the tray table inches above my chest. My mind is so jumbled I can barely remember how to operate the damn thing. I conjure up an image of Steve Jobs at the annual Apple World conference, always wearing his signature black turtleneck, confidently standing onstage, holding one of his new products and explaining its features with the brilliant simplicity and lucidity that made him famous—features that right now seem nearly impossible for me to master.

I finally open the first episode of the TV show Weeds. “It’s a random and funny story. I think you’ll probably like it,” I remember my dad saying earlier. I’m desperate for anything to take my mind off what’s going on in my body, so I give it a go.

A few horribly thirsty, painful hours later, RJ quietly ventures in to check on me. “Oh, you’re awake,” he says. “I wasn’t expecting that. Are you doing okay?”

RJ has been nothing but polite and gentle toward me, so I do my best not to sound too whiny. “So… so thirsty. And everything is hurting now. Shooting pain in my neck, whole body feels like I’m on fire. Other than that, I’m fine,” I say, concluding with a sarcastic grin.

He checks his notes for a second and then scrambles into action. “Oh jeez, I need to give you more medication. Usually if you’re sleeping, I can wait a bit longer to give you another dose. Have you been awake this whole time?”

“Yes,” I grumble.

“Okay, I’m sorry, give me a sec.” He scurries to the other side of the bed, just beyond my peripheral sight, and I hear him pushing buttons and wiggling tubes. “Okay, I gave you another dose of the postoperative anesthetics and increased your morphine drip. It will take effect in a sec. You should feel better and hopefully a bit sleepier soon.”

I’ve always been curious about morphine and what it feels like. Not because I’ve had some crazy desire for ingesting opioids—heroin frightens me to no end—but because I’ve heard of friends who went through painful surgeries say their dabblings with morphine were surprisingly yet strangely enjoyable. If people are getting addicted to related drugs, then there must be something fun about it. Of course, this is my glass-half-full mentality, always trying to find positivity in an otherwise gruesome experience. I remind myself that as dreadful as this situation is, at least I can enjoy the brief reprieve from the suffering thanks to a powerful narcotic.

It doesn’t work.

Within minutes, my pain is gone, but my mental state is worse. I find myself battling fog and confusion, trying to wade through the artificial numbness of the drugs to find my true emotional standing. I get a brief sense of why someone might like the high from powerful medications such as these. They beckon me to come away with them, to flirt with fantasy, to abandon the present, to ignore the agony, to escape any consideration of the future, and just float along in a sedated haze.

Perhaps at some other time this could be fun, but right now—when my world has come crashing down upon me, when everything I ever knew about my life has been turned on its head, when my body is literally lying broken on a hospital bed—the only thing I want is to face reality head on. I don’t want numbness, I don’t want escape. I want to be able to think clearly and feel, to begin the process of coping and to plan for how I will move forward. And these stupid medications are taking all that away from me.

A lonesome thorny bush, baking in the sun on the floor of the Grand Canyon.

“RJ, please, water… anything… my throat is killing me. It’s seriously all I can think about.” I sound like a lifelong smoker whispering through a bout of emphysema.

His compassion is visible, and his sympathy and understanding unmistakable, yet I can see RJ remembering his duties and responding regretfully. “I can’t do it, Arash. I’m so sorry. I can only imagine how bad it is. Please try to do anything you can to take your mind off it.”

“What time is it, RJ?”

He gulps, looks at the clock, and knowing now how much it means, he carefully tells me, trying to read my reaction: “It’s 1:15, buddy. Stay strong.”

Devastation, anger, impatience, and hopelessness surge through me. If I can’t make it through one night, how will I begin to put the pieces together and recover from this situation?

I battle with the morphine haze again. I can almost hear its voices telling me to let go and play. I try again to sleep, but it’s no use. I’m in so dark a hole and so deep a misery that I have no choice but to start weeping. Yet there are no tears because every bit of moisture in my body has been sucked dry, and each breath is painful. Still, I can’t stop. I choke and cough and cry and curse everything I’ve ever done that brought me here. I start to venture down a path so daunting with regret, fear, despair, and sorrow that I frighten myself silly. What I see down that path is unfathomable. I can’t bear even pondering what it has in store for me, so I turn the other way and try to snap myself out of it.

A cactus succumbing to a slow death, digging its roots into the parched earth for any sign of lingering moisture.

I go back to the TV show and give it a couple more episodes, but I can hardly comprehend anything that’s going on. Something something, bored housewife, something something, stores of marijuana, something something, kids and lawns and suburbs.

The seconds tick away, each feeling like a minute, each minute like an eternity. I can’t stop looking at the clock and wanting this night to end. I want the sun to rise and illuminate the room, I want my family back by my side and I… want… water!

I’m desperate now. I push the call button again and look at the clock for the hundredth time.

It’s barely past 3 am when RJ shuffles in and I conjure up my inner hotshot lawyer, strutting into the courtroom, ready to plead my case. “Look, man, you have to trust me on this one. I’m as tough as they come, and my pain tolerance is through the roof. Believe me, the last thing I want is to be the annoying, high-maintenance patient who can’t handle a bit of a challenge, but this is torture. I know your protocol, I understand you can’t endanger me, or yourself, and I’m aware that this is a side effect of all that weird stuff you guys put me on. But you have to understand: I’m a stubborn bastard. I haven’t taken Advil or Tylenol or any real medicine for almost a decade. My body can’t handle this crap. I’m either going to go mental from my dry, prickly tongue and lips or chew them open just to stream some blood into my mouth and relieve this. I can’t sleep, I can’t focus on anything other than my goddamn desert of a mouth. And I’m too messed up to even cry about it anymore. You have to do something, RJ.”

The ensuing expression on his face will likely be implanted in my brain for the rest of my life. He looks at me like a parent who is at once exasperated with and sympathetic to his child. He comprehends just how desperate I am, as he stares at me for what seems like three minutes, sighs heavily, and finally gives in. “Okay, Arash. Let me see what I can do.”

When he returns, he pulls up a chair next to me and sits down, leaning over me with his face and hands. “This is the best I can do.” He pulls out a thumb-tip-size piece of blue sponge on a stick and a cup of water. “I’ll dip this into water and brush it along your lips and gums. I really shouldn’t be doing this, just so you know.”

“Anything, RJ, anything at all. I’ll take whatever you got.”

The sponge dances onto my parched lips, and I get a momentary sense of relief. New images momentarily replace the old ones. A downpour in the Mojave Desert. The shooting flow of a fireman’s hose drenching flames. Waves crashing on a blistering beach with the cyclical rise of the tides.

The fourth time he dips the sponge into the carefully guarded cup of water and back toward my lips, I make my move. Imitating the great white sharks I’ve seen on nature videos, I snap my mouth open and lunge at the sponge. I bite it and suck out the few minuscule drops of water it holds. Like a guilty cat, I lick my lips and flash a devious grin as I treasure the first bits of moisture hitting my throat.

“Arash! That’s not cool! We had a deal. You’re not supposed to swallow anything.”

“I’m sorry, man, but I couldn’t help it. That thing had only a single drop of water in it though, seriously.”

He knows I’m right, and recognizes the sad-sack despair plastered all over my face. Which is probably why he barely chides me when I do it again a few seconds later, then again, and again. Pretty soon we’ve entered into a silent agreement. RJ accepts that every three or four dips, I will devour his sponge and extract it dry, and I acknowledge that come morning, no man, woman, child, or supervisory medical professional will hear of his misconduct.

“There’s nothing left of this, Arash. You destroyed it.” He holds up the sponge like a manhandled corpse, shredded and torn apart with my teeth marks.

My thirst isn’t even slightly quenched, but I’m grateful for his act of empathy.

“Can you just stay here, RJ? Tell me a story, anything. This night couldn’t feel any longer, I’m going crazy just lying here, and this stupid show doesn’t make any sense to me.”

“Oh yeah? Well, maybe I can make sense of it with you.” He sits back in his chair as he waits for me to resume play on the iPad, which takes me ten times longer than it ever should due to having almost no strength or ability in my hands. I have to flip the iPad around with my wrists and tap at it with my knuckles before I finally hit play.

Within a minute of resuming the show, the only thing I can think about is my parched mouth. I swallow, hoping that some residual micro drops of moisture might remain from the heretofore-sacrificed sponge friend (praise be to him), but I get nothing but prickly, dry air and the sensation of fifty cotton balls smacking around in the roof of my mouth.

And so the seconds drift by, reminding me of the end of a day in elementary school. I’d stare up at the big, round clock over my teacher’s head and glare at the second hand languidly ticking along, bringing all of us one second closer to freedom. Even that memory seems like fast-forward compared with what I’m going through now. And to make matters worse, I know that the ability to rapidly move time wouldn’t bring me closer to any kind of childlike liberation or joy, but would just continue this waking nightmare.

Apart from the unrelenting feeling of thirst and aridness in my mouth, lips, and throat, the rest of my senses are dull. I still can’t understand the TV show because it refers to characters I’ve never heard of, and past events are mentioned too casually to comprehend without any knowledge of previous episodes.

RJ is quiet but undistracted. What feels like a week goes by, and we’ve only gone through an episode and a half before he gets up to check his paperwork and ensure that he’s not forgetting anything for me. When he comes back into the room, he sees me feebly flailing my arms as I beg him for more relief. This must be what drug dealers have to deal with when their junkie customers run out of finances and grovel for another teeny fix. And junkie I am, except that no drug in the world is worth as much to me right now as a cold glass of H20.

He examines me again, trying to compromise with the conflicting voices in his head, then finally sighs his way to a decision. “Ice cubes. That’s the best I can do. I’ll be right back.”

The red paper Coca-Cola cup in his hand as he walks back in is a godsend. Relief, sweet relief, I think. Suddenly, I get a swagger—as much of a swagger as one can have lying immobile in bed—and feel a little cocky. I congratulate myself for not only once but twice having convinced RJ to break the rules and alleviate my suffering.

But my celebration is quickly squashed. “I’ll give you one cube,” he says. “You keep it in your mouth, no chewing or breaking it up, and absolutely no swallowing of any kind. You keep the ice cube in your mouth until it melts away completely.”

I nod vigorously. “Sure, yeah, yeah, sure, anything you say, RJ.” The junkie is back. Just give me my fix and I’ll leave you alone, I think.

While I wish he would have wheeled in a pig trough with dirty water and told me to dunk my head in and drain the thing clean, the ice cubes will have to suffice. Unlike my previous transgressions with the sponge, this time I can control how slowly or quickly to melt each precious cube in my mouth.

We continue watching the show and I start to tell time with ice cubes. There’s no way for me to cheat because RJ patiently feeds me the cubes one by one. But it doesn’t matter. The relief is momentous. It may only be a few drops of water, but the psychological boost I get is indescribable. Now I definitely can’t pay attention to Weeds or anything but the sweet, succulent gliding of an ice cube swishing around my gums, dancing on my tongue, and trickling down my throat.

“You’re a good man, RJ.”

He laughs and then goes back into ICU nurse mode. “Remember, you don’t tell anyone. I’ll hide the evidence afterwards,” he chuckles with a grin.

Three small cups of ice later, an episode ends and we discuss our confusion about the show. Just as my new best friend starts to rant about how disjointed the show is, I notice a little box on the iPad screen, next to the title and number of the episode. “Season 3,” I whisper. “I’ve been watching Season 3 this entire time? Well, no wonder nothing makes sense! This damn morphine, codeine, benzedrine, whatever the hell-a-drine shit messed me up! I couldn’t even tell that I was watching the wrong season? Jesus….”

RJ hears me rant, and as seems to be his skill, brings peace back to the situation. “Oh well, that explains everything. Guess you’ll have to watch from the beginning sometime.”

I grumble angrily, frustrated again by the cessation of control brought about by these drugs. I reach my hand up to scratch under my chin, itchy from a week of dirty stubble, but RJ immediately stops me.

“Easy there, buddy. That neck collar of yours has to stay right where it is.”

“I know, but my face itches so bad! If it’s not one thing, I swear it’s something else.” I try to scratch around my chin, but my fingers are too weak. I wonder if persistent beard itchiness is yet another side effect of the medication. “You know when your stubble is at that pre-beard stage where it doesn’t stop itching? And then I got this collar covering up my whole neck. It’s driving me nuts!”

“I know exactly what you mean, Arash.” His eyes light up. “You want me to give you a shave, right here? I can’t open the collar and get your neck, but I can at least give you a bit of relief on the rest of your face. I’ll do it if you want me to.”

“Deal.”

At precisely 5:37 am, the slowest, most painstaking and unique shaving experience of my life commences.

RJ begins to talk. About what, I have no idea, but he talks and talks. And I listen to every word. It’s a time I’ll never forget: lying in the bed of an ICU room, the halls so quiet that the only audible sound is the beeping of the machines hooked up to my body, and glancing at RJ’s upside-down face as he caresses my face and ever so carefully slides the razor—one of those disposables from the hospital supply closet, to which I would never subject myself ordinarily—up and down my face.

The contents of what he is saying are unimportant. He could be reading the corollaries and articles of some esoteric law, listing the full names of every person in his family tree for the last twelve generations, or reciting the alphabet in Swahili. All I know is that I enjoy every bit of it. The shaving experience somehow distracts me from my thirst and forces me to concentrate my wandering, morphine-laden attention on his voice, instead of thinking of all the separate ways in which I feel violent pain and discomfort throughout my body.


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