Have you ever wondered what it was really like to be in a coma?
Ever considered what it took to recover after being in one?
These are two of the questions I explore in Wake Up, Jeff!!, a memoir based on the month I spent in a coma following a car accident thirty years ago.
The story focuses first on the coma itself and the first couple of months spent in hospitals, trying to get some kind of a handle on life. The second third of the book focuses on how I deal with the dramatic, relatively unknown, life altering affects of head injury...not only physical but cognitive and emotional...as I try to return to live a normal life. Quickly, though, I see things will never be the same as they once were. In a sense, a new person is created, one who must live within his new "skin", and function within a completely new set of parameters, and the incredible challenges in learning how to "become". What makes this so fascinating, and gives it the feeling of a journey, is the way the story is told, like a voyage.
The story follows me as I finish my last two years at Bowdoin College and then move to a ski resort where I work at a radio station despite a speech problem. Then I move back to Boston and work in the family business, and the book ends when I get married. Many things transpire during this time period, and it is a great time for watching and learning. There are tremendous highs and lows, and when these are taken as a whole, we see how life can be extraordinary and what happens when one is driven to recover. In addition,I have incorporated segments of the journal I kept thirty years ago, which gives it a real immediacy.
An excerpt - Chapter One of:
Wake Up, Jeff!!
a book by: Jeff Sebell
The Deep and Dark
I am lying on the bed, a blob of flesh for others to examine, prod, pinch or fondle. Doctors and nurses hover over me, speaking softly but sharply, checking my pulse, pupil dilation and respiration. I am apparently in quite a fix here, having been transferred from a local clinic to the Emergency Room of Augusta General Hospital, in the middle of Maine.
I have been rushed to the hospital in the middle of the night with an extremely severe closed head injury; the doctor on duty in the clinic luckily recognized the severity of the injury. Not enough can be said about the seemingly simple action of immediately transferring me to the hospital. A decision to hold me under observation would have had far reaching consequences.
Deeply obtunded, I do not react to verbal stimulation. Although unconscious, my arms and legs move often, but the movements are spastic…stiff and rigid, with my legs stretched and my fists clenched…I flail uncontrollably, indicating damage involving the brain stem. I move all my limbs stiffly and wildly in response to painful stimulus, and it appears I am able to move my left side better than my right.
Shortly after my admission, I am placed on an ice sheet to keep the swelling in my brain down, and I lie there…shivering.
They treat my physical self, understanding only what can be seen or quantified. No one knows…no one can know…what is going on inside my head. I have no idea I am in a coma. I have no idea I am even alive. Occasionally my behavior gives some clues as to what I must be going through…my body contorts, or I mutter some gibberish no one could possibly understand, except perhaps the high priest of some long lost tribe of Incas.
My two friends in the car had been playing acoustic music at a bar, and we were on our way home to leave for a sailing trip in the morning, but that has been delayed by some impeccable timing. As we approached an intersection where the stop sign had been ripped down by some playful kids, a car was gathering speed, entering the intersection from my right, apparently trying to jump the hill which blocked their view of the intersection.
When my car had come to rest in the woods after being broadsided, my three friends in the car thought I wasn't hurt badly….there were no marks on me and, although apparently unconscious, I was muttering and making other noises. This was taken by them as a good sign. In the midst of the sudden and deep, post crash silence in the Maine woods, everyone who was conscious sat in shock. My friend in the passenger seat had a compound fracture of his leg, and the two passengers in the back seat were not hurt. Suddenly from the back seat comes a voice, "Well, how does it feel to be a statistic?"
Although I had not impacted anything, I had suffered a brain injury…a so-called acceleration/deceleration injury…or what I like to think of as a jello injury. My gray matter/jello had sloshed up against the walls of my skull when my head had been whipped to the side, and my brain stem had dragged over the jagged surface of the skull. Bruised and swollen, it had closed up shop. My brain had simply hung up a sign which said, "Gone Fishing", and left me for an extended vacation. Thus I am left stranded, with no brain to do the things it has always done for me, not even simple, involuntary stuff like blinking. I am lucky, though, in one respect, my body knows enough to keep on breathing without assistance, and I don't need a tracheotomy.
Isolated, I can't send or receive messages, cannot make any decisions or do anything voluntary. This is actually a good thing because my brain needs to rest in order to recover from the insult it has suffered. The coma is the beginning of the healing process, but it brings many things that have to be recovered from.
Mentally, even though I am not aware of anything, I do have a general sense of my time in the coma. This time is deep, dark and lonely…a stretch of desert in the all-encompassing darkness just before the dawn. In my head I walk down the desert feeling lonely and isolated, watching scorpions scurry to and fro as they move from one burrow to another. Tarantulas poke out their heads and scurry across the sand, each leg following its own chaotic/orderly path. I feel both a great calmness and a great restlessness: there is always some movement in the corner of my eye, but it is too quick and too obscure for me to note…I just feel it.
Once in a while some gibberish comes from my mouth, and I move like a rag doll; sudden, rigid movements that have no connection to each other, and only serve to reveal how badly my brain is injured. If I could see myself now, or if I could feel…if I could begin to comprehend what was going on, I would be terrified. Instead, I stoically take everything on the chin, accepting what I am going through because there is no choice.
Life in the intensive care ward is very regular. There are ten or so beds, all with the bars up to protect the patients; and there are always medical personnel to be seen. Then there is the quiet...the near silence, with the only sounds either being muted or whispered…soft instructions from doctors or nurses, and the beeping of life support or monitoring systems. The regularity of the ICU gives no reference point for day and night or hot and cold. The sun doesn't rise and doesn't set, but fluorescent lights remain lit all the time. Neither rain nor snow come down, but climate controlled days are created by the master machine. Days fly by like the wind blowing through leafless trees.
Twenty four hours after admission, my body continues to rebel, with almost continuous spastic movements of my limbs, and gaze paresis, which indicates brain stem lesions. I am completely unresponsive for several days following that, except for the spastic movements brought on by painful stimulation, and my right side remains paralyzed.
About six days after I am admitted, my body finally begins to stop rebelling. My movements seem to be calming down somewhat, and I even open my eyes a few times. Here is where I finally have some interaction with my surroundings…but a lot of good it does me. In fact, my mind regains enough function to screw things up. Almost as if it's a teenager insisting to its parents that it knows what it's doing…and then goes and cracks the family car up.
My brain thinks it is being useful, but it's being one big pain in the ass. With my eyes open sporadically, my brain has been able to get a glimpse of a world it can't yet interpret, and it starts jumping to conclusions. I have taken a few gulps of fresh air, but not enough to live, enough to completely confuse me. I feel as though I'm alone in a creaky mini-submarine, submerged deep in the water; and I am running out of air and food. The sub, which has lost power, drifts through the ocean, and everything is black. There is a certain air of desperation, although I don't know what I am desperate about or why. All I know is that I start to dream.
I am sitting cross legged on a white hospital bed, and the safety bars are pulled into place. Even though I can travel around the bed on my knees, I cannot stand and I cannot get off the bed. The beds four plastic wheels lie incongruously still on the shiny tile floor. I am in the middle of what looks to be a high school hallway with yellow cinder block walls and bright fluorescent lights. The lights shine down on the three horizontal rows of bars of the bed, glaring off them. The bars reflect about the hall; white lines that make me feel as though I am in the stomach of a negative world zebra.
A bell sounds and students come pouring out of the previously closed doorways along the hall. Even though I am oddly out of place, sitting, or kneeling, on my bed, wearing a white hospital Johnny in the middle of a school, gesturing wildly to the students, I am ignored. No amount of yelling or gesticulating can catch anyone's attention and get me released. It's as though they are in my dream, but I am not in theirs.
"What do they think I am?" I ask rhetorically, "Meals on wheels…the ice cream man?" These teens walk by me, and they seem to want to rub my predicament in, pointing out my lack of mobility by exercising their own free will and moving. They joke and laugh. Slap each other on the back, on the front, or on the hands as they strut their stuff down the hall…but they never do anything about me, stuck on my motionless bed in the middle of it all.
The bell rings and the students begin to file into their respective classrooms. What was once a throng, a mass of rambunctious teenagers becomes a trickle, and then…nothing. Despondently I slap my knees and sit, my legs stretched out in front of me. I have lost all hope of being taken off this bed…here I will remain for the rest of my days, and feelings of hopelessness and helplessness are immense. Now the only sounds are muffled, escaping from the seams of closed classroom doors. Finally even these sounds are gone.
I become restless and once again pace the bed on my knees. Crawling to one side of the bed, I suddenly hear a sound coming from down the hall and my hopes rise. I can hear the steady thunk of a ball being bounced, together with people yelling and the sounds of footsteps. The sounds raise my spirits, and I look expectantly in their direction. I guess I am waiting for the Messiah to rescue me; some ancient sage who will slowly nod his head and pull his beard as he observes my situation, before he nods to some of his followers to let me go. What I see, though, are several shapes coming into view, running towards me from down the hall. They seem to be playing catch with something as they come running up to my bed, and I start cheering wildly for them, as though they were my favorite team and had just won the World's Championship. This is it!!!! My freedom!!!! The only trouble is, when they are about five feet from my bed, they break off and begin passing amongst each other. Suddenly a basketball hoop appears, and the players begin passing to each other and shooting. The ball falls through the net countless times as I bounce up and down on the bed….still on my knees….cheering as each basket is scored. I am euphoric and dizzy, caught up in all this motion, so close to what I hope will be my ultimate release.
My eye catches that of a woman cheerleader running circles around the team, cheering for them, and I smile warmly, motioning for her to come to my side. She is cuter and more child-like than any adolescent I have ever seen, but she has a knowing smile which reveals so much more about her. I feel as though I know her, and I say to myself, "This is the one!!!" The cheerleader smiles that soft smile and winks, before pointing me out to the rest of the team.
As if noticing me for the first time, the team lets forth with a loud, unanimous yell, and the ball is passed crisply to me. I grip it tightly, probably too tightly, and send up a wobbly, two handed set shot to the basket. The ball hangs on the rim for a second before falling in. The team sends up another cheer when they see my effort go through the netting, and now that it looks as though I am accepted, I hope for my freedom. But…what is going on? No!!!! They aren't leaving me, are they? How can they leave? I motion wildly and yell as loud as I can, but no words come from my mouth. As if I'm not there at all, the team regroups and files away, bouncing the ball as they troupe down the hall. Their sneakers slap the floor to accompany the "thwack…thwack" of the ball, all I can do is sit and watch as they leave me. I am stuck on my knees, unable to get off the bed. A feeling of resignation comes over me, and I fall backwards onto my mattress with a great, heaving sigh.
My family…the doctors and nurses in the ICU, know nothing about my dreams and nightmares. They walk past my bed and see me lying with my eyes closed, completely unaware that I am being treated to matinees and special features on a big screen. If they knew perhaps they would get me some popcorn, unbuttered please. They know nothing about my fears or the nightmares I'm having that I can't wake from. All they see is what my hospital report says is a "well developed, well nourished male", lying in the climate controlled ICU, unconscious, tubes running to my nose and ankle.
My closed, dark world is real to me. There is pain which I can feel. There is terror, and the despair of being trapped in a place I have no comprehension of. I can taste bitter tears in my dreams, running down around the corners of my mouth. They represent what my life has become. Indeed, should I even call it a life?
To everyone else…I am just sleeping.
They see distinct stages of coma. When I was first brought in to the hospital, my coma is deep, and my reflexive body movements are like those of a GI Joe doll being positioned for battle play. When the curtains on my eyeballs are raised, they roll around without purpose or planning. After a few weeks though, I become semi-comatose. I sit with my eyes open, but I don't react or communicate, acting as though I'm in some sort of magical trance, getting ready to walk over hot coals. A therapist comes in and exercises my muscles so they don't bind up and degenerate. Other people constantly try to stimulate me; they talk to me, pinch me as though I am a human pin cushion. A radio plays non-stop, for my doctor hopes I can make some connection to the present that will aid me in waking up. Their hope is I am hearing things, and then actually moving beyond hearing them to understanding. At what point, though, does this noise have meaning? When does the noise become intelligible, or rather, at what point will I be able to make sense of the noise? What has to happen for this to be?
In some ways this is quite a funny scene…all these ideas are being tested, and meanwhile the health care professionals are doing a rain dance around me…hoping it will rain… rain consciousness all over my room.
One afternoon I begin to hum along with one of the songs on the radio. People are excited because it seems as though the next step might very well be consciousness, but that was not in the forecast. Evidently, medical meteorology has not advanced enough to predict when it will rain consciousness. Not only that do they not know when I will get better, but I take a turn for the worse. I become very sick, perhaps the closest I have been to actually checking out of this hotel. The doctors discover that I am bleeding internally, and am losing a lot of blood. However, I am not yet ready to end my stay. They diagnose a stress ulcer, a common occurrence following a traumatic brain injury, when certain acidic hormones are secreted, coupled with the acidic anti-seizure medication. A fluoroscope is taken and, in the words of my doctor, he sees an open wound in the wall of my stomach, where the stomach meets the intestine, and a "geyser of blood is shooting against my stomach wall". If this were Texas, and the blood was oil, we would have been running around screaming that we had hit a gusher, but obviously there are other things to think about here. I need emergency surgery.
Now, after the operation, it seems as though I've regressed. First of all I've got this huge, ugly scar, which actually has about a 3/4 inch of height. Whereas it appeared as though the various rain dances were having an affect, and consciousness might have been around the corner before, all bets are off the table now.
On account of the fact that I am already unconscious I am not given as much anesthesia as a normal patient would have been. Fine rational, but I'm sorry to report that "unconscious" does not mean unfeeling. Maybe I should have been given a bullet to bite, or had some whisky poured down my throat. Either of those home remedies might have helped.
Somehow my mind was making some sense, and the timing of the operation coincided with a dream. In the dream I am visiting my grandfather in the hospital (my grandfather who died thirteen years prior from a heart attack), and while I am in his room, I have my own, huge, heart attack. I feel real pain as my stomach is cut open and my nerves are tied in a classic Vagotomy and Pylorouroplasty (colloquially known as a V & P, an operation no longer done because it is so crude), while in my dream the paramedics rush me, doubled over in pain, to the ICU.
A few days after the operation, I stabilize and become semi-comatose…one step closer to consciousness. My eyes are open more often than before, and I see things, but I cannot make sense out of what I see. Scenes and props fall into my mind, as fish food is dropped into a fish tank. Whatever is dropped is simply gobbled up. My mind, similar to a fish, doesn't know when it has eaten enough. Not only do I not know when to stop, I don't know what I have just eaten. The same thing applies to what I hear. Interpretation is way too advanced for me. I only know and feel the simplest things: it is quiet, I am isolated, I have a great fear, trapped as I am on a bed with bars around it. Not only that, but when I am taken off the bed I am tied to a wheelchair so as not to fall. So, I am trapped and tied. Occasionally, my ears hear a nurse being called over the intercom and I feel as though Big Brother is in charge.
Having my eyes open might be a good sign to some people, but for me it provides fodder for my fears, for what is actually happening when my eyes are open shows up on my wide screen as dreams. There is a new helplessness along with an acceptance of my fate which is almost obscene, but at this point I know no better. All I can do is breathe and be terrified.
So these wide-eyed perceptions make their way into, what I think, are dreams, but are actually a reality I cannot interact with or impact. There I am…tied to a wheelchair in the middle of the Intensive Care Ward as the two nurses on duty walk in front of me. One of them, a short older woman with a head of thick hair, streaked with gray, runs by me to one of the other cubicles. I know her name is Mrs. Crocket because I have heard it announced. I cannot see where she is running, and cannot understand where I am….except I know that everything is white and quiet…and I absolutely cannot figure out why she seems to be running by me without so much as a nod when, in my mind, I am gesticulating wildly for her to help me. I want to be untied.
The other nurse walks in front of me, moving to another area of the ICU. She is tall with short, straight hair. I can sense no emotion escaping from either of these women. Both of them are motor-like, performing their duties without a wasted motion. Mechanically they run this way and that way.
Bright lights are shining down on me from above, and I feel as though someone is about to interrogate me. However, the only thing I could say is, "I know nothing!!" This whole scene is too much. What are they going to do with me? I start to get angry, "Let me out of here, you old bag!! Come one, let me out of this chair!!!! Why am I tied here like this?????"
She acts as though she can't hear me, but I know she can. She's got to be able to. How can she not hear me?? I'm screaming!!!!!!
The situation seems more and more hopeless to me. I am trapped; a flower that blooms not yearly, but daily, with each rebirth bringing a new nightmare. The people around me have not a clue. But there is one thought that is uniting them: those that are watching me, looking for a change, seem to feel I'm getting better; I am now able to be fed solid food by one of the nurses. The fork comes up to my face. My mouth opens. I‘ve figured out how to chew, and then even swallow. My father, visiting from Massachusetts where my family is, asks me if I know where I am, and in a low monotone I say, "In a rehabilitation hospital."
My father, realizing I'm getting closer to a human-like state, asks a follow-up question, as any good reporter would. He asks if I am hungry, and I nod. "What would you like to eat?"
"Grizzly bears."
I lie quietly in bed, while this capital city of Maine prepares for a visit from President Ford. A nurse brings a portable radio in so she can listen to the President speak. At two o'clock, when the speech begins she yells to everyone, "He's talking!!!" and all the nurses on duty run to my bed, where they expect to see me blabbing away. However, I lie still, not knowing or caring what the commotion is about. Indeed, I don't even know that I have just upstaged the President of the United States
Now that I am sitting some of the time in a semi-coma, with my eyes open, my parents have new glasses made for me in the hopes that if I can see better I would wake up faster. One day they bring the new glasses in and triumphantly place them on my nose. I get a puzzled look on my face and slowly point to my eye. Curious, everyone thinks. Why is he doing that? Then my father gets and idea. No one had thought to check for my contacts, and apparently they were still in my eyes after three weeks.
About a month after I am brought into the hospital…something happens that only I am aware of…and actually, it is the first time I've been truly aware of anything. As I sit in the middle of the ICU, tied to my wheelchair, there is a subtle but dramatic change. I'm like a man who was previously invisible, but now holds his hand up to the light and can see flesh. First the edges are fuzzy, but gradually they become sharper, and the room assumes depth and different areas of shading, rather than being lumped together in one bright white light. More than anything else…the room acquires meaning, and it's a miracle the way it happens; slowly, steadily, the ICU takes shape before my eyes, and I find myself looking at a fork moving up to my mouth. My mouth falls open and the fork comes in. I am quiet, not wanting these people to know I have regained some awareness, but I am slowly getting my bearings.
I move slightly from side to side and feel the bonds tying me to the wheelchair, and I know what I have to do. The nurse brings more food up.
A ringing noise breaks the silence, and the nurse leans over to answer a telephone. I feel something that I think is excitement, but I do my best to keep it to myself. This is almost like a clandestine CIA operation. I know I have to continue to act dumb, not wanting anyone to know I have some control over what I am doing. The nurse talks on the phone for a minute or so, and then holds the phone to my ear.
The voice on the other end sounds familiar, and I quickly recognize it as my mother's. She launches into a monologue, wanting to stimulate me with a familiar voice. I guess the day before the nurse had held the phone up to my ear and I had breathed heavily into the phone in response to her voice…something like a volcano letting out steam and ash before and eruption.
"Hi Jeff. How are you today? We are all fine. Dad is just going…"
Impatiently I break in, knowing this may be my one chance, "Help!!!! I'm being held prisoner!!!!!!"
