The original title of this story which was submitted here on Deviantart a year or two ago was "Who Am I?" Writing an autobiography when suffereing from memory loss can be difficult, and this story has been updated to reflect slight changes in the placement of my memories. I have also changed the title from "Who Am I?" to "Human Like You" to reflect my desire that disabled people should be not be treated as inferior or damaged people. I hope you enjoy reading this updated story. Please comment liberally.
Chapter 1 – Accidents Happen
I was 11 years old when this story began.
That day started as normally as most days did. The sun rose… I really should have appreciated the sun more that morning. I wouldn’t see another sunrise for several months.
That day I was going to be going with my grandparents, affectionately called Grammie and Granpee, on some errands. Lots or people to see, places to go, things to do, but my grandparents spoiled the heck out of me, so I knew it would be fun too.
Dave, a close friend of mine, got to come along too.
Granpee drove that morning (left-front passenger/driver), and Grammie sat beside her husband (right-front passenger). I sat behind my grandfather (left-rear passenger), and Dave sat next to me (right-rear passenger).
During that morning, every errand went pretty much the same. We would stop at our next errand, and regardless of whether I was getting out of the car or not, I took my seat belt off. Then, before we left for our next errand, I would wiggle around and put my seat belt back on. The backseat was crowded with our bags so my constant reshuffling was getting on Dave’s nerves.
“Sean,” he said, “You’re above the legal backseat seat belt limit. If you’re going to take your seat belt off, leave it off. It’s okay.”
I considered this, and was reluctant.
For the next couple errands we went on, Dave wore me down.
After the last errand we ran, I got back into the car and left my seat belt off. I had just passed the minors age limit restricting me to always wearing a seat belt. My shackles had been broken. I was no longer confined to the seat by that rigid belt. I was a big kid now. The freedom felt exhilarating.
It was break time now.
I only had a couple dollars (my parents weren’t to forgiving on the allowance end when I didn’t do all my chores) and wanted to spend them wisely, getting the most out of my break money. So I asked Granpee to go to McDonalds so I could buy from the dollar menu.
He replied that we would be going to the Summers Grill. I didn’t like the Summer Grill; sure the hot dogs were great, but they were incredibly overpriced. If we went to Summers Grill, I would be lucky to be able to get a soft drink, left alone a hamburger. I began to insist to my grandfather that we needed to go to McDonalds, but perhaps a bit too strongly.
“We’re going where I decide we go,” my grandfather shouted / said forcefully.
I lapsed, sulking in my seat. After a few seconds, I decided that sulking wasn’t worth it so I began to read a book while we drove… to Summers Grill.
Why won’t you ever listen to me? I jabbed a thought towards the front seat. I hate you…
I continued reading my book, ignoring the passing landscape around me.
Summers Grill was a medium sized gas-station-wannabe-restaurant at the intersection of a four-lane highway and a two-lane road. We were driving on the two-lane road approaching the intersection. I had my seat belt off and I shifted into a more comfortable position.
Suddenly, I heard my grandmother shriek in terror. I looked up and saw the intersection approaching… too fast! My grandfather gasped and he went to hit the brake but he couldn’t slow the car. As we entered the intersection I looked to my right to see if there was any oncoming traffic. There was…
An armored bank van, Brinks Security, was on its way to deliver a small payload of money to some local but intersected us first. I heard the sound of screeching rubber, only a microsecond before a horrendous bang shuddered through the vehicle. The right side of the car collapsed under the impact, the windows blowing inward under the stress, door panels cracking and splintering. Dave and I were not wearing our seat belts and were both pulled towards the impact.
For a moment I was suspended in air filled with delicate shards of glass or in glass filled with delicate pockets of air. I found myself in a place of complete disarray – debris constantly rearranging itself at random as it does – then the collapsing steel door panel seemed to leap out at my face and I struck it so that I was no longer moving anymore. When I hit the world went black…
I blinked my eye; at least I thought I did. My right eye felt like it was leaking and the world was crimson red on that side. I had a terrible headache, and my mouth tasted like copper. My left eye was still intact although my vision blurred severely with every heartbeat, pulsing in and out of focus in time to an internal beating I felt I didn’t deserve.
I saw a pair of eyes staring back at me. A forked tongue flicked in and out checking the air. The car had landed in a ditch and had disturbed the slumber of a green snake. The surprised snake had slithered into the car to check us out, then it slithered off apparently content knowing it couldn’t do anything.
I heard a strangled cry from the front seat. I couldn’t see up into the front seats but I knew that the cry had come from my grandmother.
I lifted my head slightly, but that brought on a wave of agony. The area inside the car was filled with tiny bits of glass, steel, rubber, asphalt, metal, plastic, sand, dirt, grass, and other assorted debris. That was all I could see, then I saw no more…
Chapter 2 – I’ll Show You
That was the first thing I felt. Every muscle, every ligament, every bone, ached with such intensity that I found myself grinding my teeth, although the motion of my teeth made the pain even worse.
A flashlight… shining directly in my eyes.
Turn it off! It hurts.
“This one has some response.”
The light flicked off.
“Sir, do you know who you are?”
“Sir, can you hear me. Can you tell me who you are?”
I may have mumbled my name, because he left to get help. Why are doctors always concerned with who you are, espcially when it's obvious you can't talk clearly?
There was an odd strobe light effect happening around me. I stared at the stroboscopic effect trying to make some sense out of it. Every time the light flickered, momentarily replacing itself with its antithesis, my surroundings changed; things moved, people had changed positions, cars had appeared and disappeared.
Since the pain blotted out most conscious thought, it took me a while of staring stochastically at the strobe effect to realize what it was. Eventually it occurred to me that I was blinking in an out of consciousness. Then the blinking world ceased and I just passed out.
I awoke in moderate pain somewhere else. There were several bright lights above me, and computer screens displaying my vital conditions.
Two very concerned people standing nearby me. The woman noticed that my eyes were open first. Both of them came over quickly.
“Sean!” the woman had been crying, dark circles etched beneath her eyes and tears marring any semblance of makeup.
The man had also been crying. Another man dressed in a blue surgical gown looked at the sad man and woman and spoke to them. “He won’t be able to talk to you until later. He’s been intubated…”
Turn up the oxygen. I need more air. my mind screamed, although I couldn’t speak with the large tube running down my throat
“…Once we’re certain that he’s stable we’ll move him to his own unit.”
There were flexible tubes going into my nose and a large tube down my throat. Needles had been pushed my arms and were carrying liquids and medicines into my body.
Help me… I need more air. Turn up the air. I’m not getting enough.
I wanted to talk, but there was too much stuff in my throat. At most, only a grunt came out. I felt like I was suffocating, and in my condition that terrified me.
The woman leaned over me.
Who are you? Can you turn up the oxygen?
“Sean. I’m your mother. Do you remember me? Blink once for yes and twice for no.”
Sean? Who is Sean? Am I Sean? Why are you so concerned about me? Who are you?
I couldn’t feel my face. I’m not sure how many times I blinked…
“That was five blinks… Let’s try again. Blink once for yes and twice for no. Do you understand?”
“All right. Do you remember me?”
Several more tears coursed down the face of the woman identifying herself as my mother. The man next to her identified himself as my father. I did not recognize him either.
The man in the white gown reappeared at the side of my bed, although its possible he had never left. “Mr. and Mrs. Murphy, we need to work some more on your son. We’ll let you know when we’re done.”
After shedding a few more tears, the man and woman left. The strobe effect returned, partially because of looking at the lights on the ceiling as I was being moved, and partially because I was fading in and out of consciousness.
Light returned again...but not as bright as before. I was in a smaller room, and the lights were dimmed to a more tolerable level.
Two interns stood at one end of the room, first looking at me and then turning to look at some notes in front of them.
“I don’t even know why they opted to save him. Look at his injuries. He would have been better off dead.”
The other intern nodded. “His life will be a living hell.”
I blinked and thought, I’ll show you…
Chapter 3 – A Living Hell
Dave, my best friend, despite being on the impact side was alive and unhurt (minor concussion) but had total amnesia.
I had just survived Hell. Little did I realize that my personal demons were just getting started.
I had survived a massive skull fracture, and massive brain trauma. I had a gap in my skull approximately 1 inch tall and 6 inches long stretching from just above my nose traveling around the right side of my skull to just behind my right ear. 110 stitches had been required to close up my head, not to mention a skilled neurosurgeon to remove the glass, dirt, and debris from my cranial cavity. In an emergency groundbreaking experimental neurological procedure the doctors had removed 98% of the right front quadrant of my brain (the part of my brain so badly damaged it was considered unredeemable), leaving me with brains totaling ¾.
I was, of course, unconscious for the procedure, and doctors said it was unlikely I would ever wake up again. After such trauma, they fully expected me to slip into a coma for the rest of my life.
Yet, somehow I pulled through…
Even after I awoke doctors still gave me less than a 2% chance of recovery. Most doctors agreed I would be lucky to be able to form a coherent thought, much less walk and talk again.
I blew past their expectations so fast that doctors who saw me told me I was lucky. I got sick and tired of being reminded how lucky I was even though I knew it was true.
One doctor had told my parents that it was likely I would never recover from my amnesia. That doctor gave my parents a two-page spreadsheet with a list of problems they could expect in the coming years. According to that doctor I would be prone to have abnormal behavior, affective disorders, amnesia (both short-term and long-term), anomie (characterized primarily by antisocial personality syndrome), anxiety, autism, bedwetting, bipolar and / or split personality disorder, compulsive personality disorder, conversion disorder, cyclothymic personality disorder, delusions and hallucinations, dementia praecox, depression, depressive neurosis and depressive psychosis, disorientation, epilepsy, escapism, exhibitionism, fugues, guilt, hebephrenia, hyperactivity, hysteria, infantilism, learning disabilities, malaise, manic depression, masochism, narcolepsy, paranoia, phobias, regressive personality disorder, schizokinesis, seizures… to mention only a few.
Despite my head injury, I recovered in record time. In one week, I was discharged from the hospital and placed in home care.
That day I was released I received another shock. My parents came into the room and explained all that they knew about the accident (which wasn’t much but was more than I had with amnesia).
My grandfather had had a mini-stroke while driving and had crossed through a red light. I was told that both Grammie and Granpee had died in the accident. My grandmother had been crushed between her locked up seatbelt and the collapsing door (I later remembered hearing her scream), and my grandfather’s aortic artery had torn from the whiplash and he had hemorrhaged to death.
I was crushed; my grandparents – my closest friends, and the light of my young life – were dead.
After I was released my amazing recovery continued. I relearned how to walk within a few months, and started home-school (5th grade) again while on home care. With my parents support, I became a math expert (and was able to do lighting calculations in my head). I had an impressive 3-D aptitude and went on to major in algebra, trigonometry, geometry, and pre-calculus.
One year passed…
My amnesia had not faded. I didn’t remember anything about the accident or the year prior to the accident. I was suffering from classic symptoms of post-traumatic stress and had developed dystychiphobia, a phobia toward cars, car accidents, and automobile rides. I also had massive depression. I missed my grandparents so much and felt responsible for their death (commonly called survivor’s guilt).
I had to remember!! I realized that to alleviate my feelings of guilt I had to remember what had happened.
I made it my mission to recover my lost memories by whatever means necessary. I tried everything from biofeedback to meditation to sleep journals.
During the next 7 months I recovered a great deal of memories, but nothing of the memories I needed to allay my depression. I remembered everything that had occurred during the lost year up to the day of the accident, but the accident day was still behind a thick shroud. My depression increased.
My clothing preferences changed from the colorful to neutral colors and finally black. I was misunderstood by everyone. Even my parents who although didn’t expect me to be normal ever again were astounded by the progress I had made and began expecting me to go the extra mile. Most other people didn’t try to understand me, and openly made no attempt at trying; over the years I was profiled as everything from a drug dealer to a terrorist just because I didn’t fit in quite as well as everyone else did.
Although I did not become violent, I became very antisocial – big surprise there when most of society had already written me off.
About this time I realized that things were not going to get much better. It wasn’t going to be a brief dip into Hell; it was going to be a life-long struggle against disabilities - disabilities that pitted me against myself.
Chapter 4 – Misdiagnosis
I was 15 years old. I had recovered most of the memories from the events immediately before the accident, but my depression was still severe because I couldn’t remember what had happened at point zero and I was plaguing myself with “Why’s” and “What if’s.”
What if I had thrown myself over the seat and put the car in park (unrealistic I know)?
What if I had done more?
Why hadn’t I done more?
I want to be a normal child. I want to be a normal child. I want to be a normal child.
None of my friends had ever been in car accidents before. None of them knew the pain of losing both grandparents in a car accident and being powerless to make a difference. None of my friends understood what it was like to have epilepsy, seizures, depression, post-traumatic stress, hallucinations, phobias, and amnesia.
I was getting no sympathy or help from any of my friends, and my parents thought I was making such wonderful progress that I felt terrible telling them my problems and breaking their hearts. So I didn’t tell anyone about my problems, except for the really serious ones.
The problems that were hideable got hidden, only the major ones were treated.
I became a mimic… I suppose all children do this at one point or other in their life, but since my problems were more severe than any other child, my mimicking was also more intense. Mimicking all the ‘normal’ children around me, trying to become like them, trying to fit in and be accepted.
But their life was not mine, and fitting into their shoes was painful.
But I was very smart; my grades in school were B+ and A’s. I was studying Psychology in school as an elective.
So becoming a mimic was easier for me than most people, I had a textbook to guide me. And I had a driving reason.
I want to be a normal child. I want to be a normal child. I want to be a normal child.
I had one major problem though. I didn’t have enough people to observe to making my mimic successful.
As a result, I began displaying symptoms that I thought were normal for children my age. To treat some of the problems I was displaying, my parents took me to a psychologist named Gualtieri.
In all the instances of error arising from medical fancy, the worst is what we have before us; the habit of exhaustively describing a social sickness (and applying it to everyone), then exhaustively propounding a social drug. Back in 1995, Attention Deficit Disorder (ADD) was the most popular mental disorder to treat (still is today). Everyone who went to see a psychologist was treated for ADD, even if they didn’t have it. Many psychologists used ADD as their backup plan (if they couldn’t figure out what was wrong with their patients they said ADD).
Gualtieri was one of those psychologists. On our first visit, he mentioned to my parents that he thought I was ADD and said he would prescribe Ritalin.
I later discovered that the only reason Ritalin was such a popular social drug was that it was an upper.
I objected. I said I didn’t think that simple observation was enough. I wanted to be tested for ADD (I didn’t think I could mimic any psychological disorder well enough to fool an actual psychological test).
On our next visit, Gualtieri put me through a standard test for ADD. To be objective I had to do the test twice, once without medication, and once with a single dose of Ritalin.
After the computer spit out the results, Gualtieri took them over to his desk and pored over them. I went over and stood over his shoulder for a few minutes. My 3-D aptitude kicked into high gear as I analyzed the charts and graphs from both testing sessions over my psychologist’s shoulder.
I could tell I had Gualtieri confused; the sessions were practically identical! Probably what had him even more confused was that the stats from the first (unmedicated) session revealed I had strong focus, and those results hadn’t changed on the second (medicated) session. I quickly crunched some numbers in my head. Except for a 1½% deviation, the results were identical (I could tell from Gualtieri’s stunned expression that he was expecting a much higher deviation than that).
Trying to maintain an unfazed look, Gualtieri shuffled all the papers together and turned to my parents. “Mr. and Mrs. Murphy, the tests confirm that your son has ADD. Once again I recommend that he be placed on Ritalin.”
“But the tests were nearly identical. There was only a small deviation between the tests. Doesn’t that tell you the Ritalin didn’t have the effect you were looking for?”
Gualtieri’s skin darkened. He was unaccustomed to be talked back to by a child, and especially a child-patient.
“There was enough deviation to prove that you need to be medicated. And you are to young to understand such a complicated report as that.”
“I know algebra, geometry, and trigonometry,” I retorted, “I can also do lightning math on basic arithmetic. And your graph had all the numbers written on it. It was easy to read.”
Despite my protest, I spent the next five years on Ritalin…
Chapter 5 – Blood and Tears
(I really don’t know what to say about this chapter. I’ll warn you. It’s disturbing. It’s nasty. But it’s necessary. It’s not just there for the sake of nastiness. I don’t normally write “gore” because, as a general rule, I find it distasteful and revolting and I think it makes inappropriate subject material. This chapter however, is meant to disturb… To truly understand who I am, you will need to understand all of the things that happened to me.)
So despite my best efforts to be like other normal kids my age, I realized that everyone else had problems as well. And now I was being medicated for a problem that I didn’t have, ADD. Well, this just wasn’t going according plan. I set out to be accepted, and I ended up alienating myself even worse than before.
When I turned 17, new desires common to most youths expressed themselves. Girls… Cars… Loud Music… New (outlandish) Clothing… Girls appealed to me, but I wasn’t sure how to go about fulfilling that desire. So I focused my energy on another desire. Cars now appealed to me.
I had only been having very minor seizures for the past 6 years, and since I normally had a great deal of warning before the seizures, I figured I could drive relatively safety. But, of course, I would need to be insured. That required money. Money meant I needed a job.
My first employment came at a small chicken restaurant called BoJangles. I worked first as a cashier, then in November I was promoted to a cashier / waiter / team leader.
I had several friends at BoJangles who, although they didn’t understand me, were close friends. Juan was one of those friends. We shared tastes in music, clothing, and cars along with sharing the same work shift so we spent a lot of times talking together. Our interests turned towards girls. Juan liked every girl he saw, and kept trying to hook me up on a date. But our interests in girls were different, so I held back.
I’m not sure what happened that led up to…
We were understaffed that cold December morning, so Juan and I were double-shifted, helping customers and cooking.
I didn’t have a good pair of shoes for the work that day. The soles of the shoes I was wearing were worn flat and didn’t provide much traction. Nevertheless, I slipped from one chore to another around the restaurant always looking like I was going to break my neck but never actually managing to do it.
“Juan, we need some more chicken from the walk-in freezer. And some chicken strips too.”
Juan had been really quiet that day. Something was on his mind. We would talk about it that afternoon during our break. Juan walked into the freezer to retrieve the edibles.
Let me pause for a moment and describe the freezers in detail. When the BoJangles was built these freezers were bought cheaply from a meat slaughterhouse that was going out of business. These freezers were immense and had almost 3000 cubic feet of space inside (15 ft. tall, 10 ft. wide, 20 ft. deep). The freezers were so heavy that part of the foundation underneath them had shifted and the floors of both slightly slanted towards the rear of the freezer. The most interesting feature of the freezers was the metal hooks in the rear of the freezer that hung down from the ceiling probably a good 3 feet. I imagined a Chinatown-like scene earlier in this freezer’s life. Giant slabs of meat hanging from the massive hooks chilling in the freezer…
Sorry, I digress. Back to my story…
I spent the next few minutes helping a few customers and rushing to make their orders when I noticed that Juan had not come out with the chicken we needed to cook.
What’s wrong? Why hasn’t he come out? Did we run out of chicken?
I walked over to the freezer and opened it. I stepped inside and turned to flick on the light. As I did the soles of my shoes lost traction and I landed on my butt and went zooming across the icy floor towards the rear of the dark freezer. My feet hit the rear wall with a thud, and something dripped on my face. I rubbed my hand to wipe my face as I carefully got up.
I looked at my hand. It was red!
Ketchup! What is ketchup doing in here? It belongs in the refrigerator not the freezer.
I turned around… and there was Juan. His noose was hanging from one of the massive hooks. But not satisfied with just asphyxiating to death he had also slit his wrists and then plunged the knife into his chest. A huge red stain had covered his shirt and the blood was dripping down off his chest and wrists.
I screamed and backed away, horrified.
My scream had been heard outside the freezer. A few employees came to check on me.
Although I was in anguish, I forced my mind to focus. I told them to call 911 and clear the restaurant of customers since the police would need to cordon off the area. We would be closing early that day; without the use of the kitchen there wasn’t much use in staying open.
The entire employee staff saw Juan’s body before the police arrived.
Some of them who hadn’t respected him in life respected him even less in death. One of them walked up to Juan, climbed up the short ladder Juan had used to hang himself, and punched him in the face. Then he laughed about how he’d always wanted to do that. Several of the other employees joined in with the laughter.
“Get away from him!!” I screamed, my pain and tears fueling my rage.
The employee laughed at me, then whirled around and punched Juan again in the face. His entire body swung in the noose and I heard his nose break.
I lunged for the employee in a rage, my hands going for his throat. Two other employees wrestled me to the ground and held me there. I sobbed and begged them to leave Juan alone.
The rest of the day was a blur. The police arrived and questioned all the employees and eventually we were allowed to go home. Mom and Dad were at home, but I didn’t say anything to them.
I went to my room and cried with wracking sobs that seemed to shake heaven and earth. Life no longer seemed worth living… I had lost my grandparents. I had lost Juan, my friend.
Why was I still trying?
I don’t remember getting the knife, but I remember using it. That night as I went to bed, I decided I didn’t want to wake up. I drew the knife across my right wrist and watched as the blood began to pool there on the sheet. Then I lay down and went to sleep.
Chapter 6 – Sleep. Love. Forever Sleep.
I awoke the next morning and my wrist was hurting terribly. There was blood all over my bed sheets the bottom sheet had coagulated to my wrist. My arm was completely tingly; I had slept in some awkward position and cut off the blood flow in my arm and it was complaining by tingling.
I went to the bathroom and carefully tore the sheet from my wrist, and I stared at it unbelievably. There was a neat little cut there, not very deep, but deep enough to bleed copiously. I looked at my wrist and grimaced as the open wound stung. I promised myself that no matter how bad things got, I would NEVER resort to suicide again. It wasn’t worth it; and sometimes it backfired and you survived as I had just found out.
What could possibly have made me want to commit suicide? I had no memory of any tragedy in my life that had been that bad. I was well acquainted with amnesia, but I was under the opinion that something traumatic had to happen to erase memory. I checked my head; there were no new scars.
I had my only theory was that something traumatic had happened which had cuased me to lose that portion of my memory, and that the traumatic event had pushed me to the point of suicide.
But I had nothing to connect any details to these theories so I decided to forget it. Eventually, I theorized I would be able to remember it. My memories of the car accident were very close to revealing themselves in entirety.
However, I did not want anyone freaking out about my attempted suicide. Being December, I had a way out.
I went out and got some wood to stoke the family woodstove and placed my bed sheets in the hot stove along with the wood, incinerating the bed sheets along with the blood on them.
That morning, I got a phone call from the BoJangles corporation telling me that they were shutting down our restaurant for an extensive refit (they wanted to bring the refrigerator and freezer units up to code), and all employees were being suspended without pay until further notice. If I was still available in the future, I would be offered a job there again.
I began job hunting in earnest again. I found another job at another family restaurant called Chick-Fil-A. I was hired there as an assistant manager / team leader (meaning I was hired to do every job in the restaurant that wasn’t assigned to a specific person; very hectic).
Around Feb 98, I started remembering pieces of the car accident. These pieces began revealing themselves in waking dreams which I began recording and piecing together.
This was a painful process. It was even more painful than the original car accident since I was reliving these pieces over and over again. It wasn’t simply a matter of remembering a new piece of memory and putting it in its place; I relived the entire sequence of recovered memories over and over again until the recovered memory fell into place.
I began having rather pronounced night seizures at that time, and frequently upon waking in the morning my mind would be completely blank (The only memory that would be latent on my mind would be the pieces of the accident). Every night I had the same trauma and upon waking up every morning I had to reconstruct my life and other memories over and over again.
To help myself, I began developing adaption techniques; I wrote an extensive letter to myself that I placed on my nightstand table. Then I could read it in the morning to remind myself of what I had forgotten about myself and my life. I bought a palm pilot to take notes that could be used to refresh my short-term memory.
I began developing another phobia, agoraphobia. I tended to scare people once they realized I had seizure and memory problems, so I began avoiding human contact, sometimes even my friends.
An armored bank van, Brinks Security, was on its way to deliver a small payload of money but intersected us first. The right side of the car collapsed under the impact… For a moment I was suspended in air filled with delicate shards of glass or in glass filled with delicate pockets of air.
One night I got the surprise of my life (for the second time)…
…there was Juan. His noose was hanging from one of the massive hooks. But not satisfied with just asphyxiating to death he had also slit his wrists and then plunged the knife into his chest.
I remembered finding Juan’s body in the freezer. Although momentarily depressed, I realized I had not been at fault for my friend’s death or my grandparent’s deaths…
Every night I went to sleep, the memories of my life increased as I relived it over and over again.
Eventually my memory was restored and the morning memory loss ceased but the nightmares have never gone away.
Chapter 7 – Black Tears
What I needed was a new perspective, a new look at things.
In 2000, when I turned 20, I got an entirely new perspective on things. I moved away from home to live with my grandparents in Washington State. I went to a computer school in the area, and started making new friends.
One of my new, really close friends a girl named Suki.
Her family had recently moved into our area they had only one daughter named Suki. Suki was the same age as I was. She was a very attractive Japanese-American girl with olive skin and black eyes. She had long black hair that flowed off her shoulders like an obsidian waterfall. I thought she was the most gorgeous person I had ever met.
Unlike other people I had met, who it seemed tried hard not to understand me, Suki was very understanding and empathetic. I spent much time with her. Eventually her understanding spirit influenced me enough to open up and we talked about the car accident that I had been through, and Juan’s suicide. She helped me feel like I belonged and some of my depression lifted.
Suki was a close friend of mine for two years. For a while we were so inseparable that people began making wagers on how long it was going to take me to propose to her.
Of course this only emphasized to me how clueless people were about me. I wasn’t hanging around Suki because of romantic interest, even though in a few more years it might have naturally evolved into that. I hung around her because she was such a good friend and empathizer, and I didn’t have to mimic or be anyone but myself around her. With her help I recovered some more memories of the car accident, and we even discussed the memories that we had recovered. With her help and support we pieced the memories together like a temporal jigsaw puzzle.
Up to that point my manual dexterity on my left side was severely impaired. Thus, simple things like tying my shoes, and, well any activity that used my left hand were difficult for me. Suki helped me to learn how eat with chopsticks, which was very useful at her house since her family didn’t use (or it seemed, own) forks. Eventually I mastered controlling chopsticks with either hand, although the left hand gave me a fit when I had to use it.
I was very impressed at how many of my faults she put up with. I don’t think there was a single time we saw each other that I didn’t forget her name (partial amnesia) at least once. A few times, I even had small seizures during our times together. None of this seemed to faze her; she was unstintingly loyal to her friends.
In 2002, when I was 22, I began seeing her in a different light, a more romantic light. I was determined to uphold my morals and wait until we were both ready to take any next step together, but I didn’t want to wait until it was too late to talk with her about it. I was going to be going to a concert that weekend, and planned to spring the question on her at the concert. I called Suki and she told me that she wasn’t sure if she would be able to make it; she would probably end up catching the concert the next weekend.
The morning of the concert I awoke to a new problem, a new symptom. When I woke up my mind was completely blank; I didn’t know who I was, where I was, everything… gone. To top it off, I was having serious problems with my motor control, and was having a great deal of trouble walking; I ended up crawling around most of that morning on all fours till I felt balanced enough to attempt a few first steps.
Needless to say, I was a bit distracted that day.
I carpooled with some friends to the concert.
By the time we made it to the convention center, I had finally gotten used to seeing my face in a mirror. Remembering my name, and remembering to react when someone called my name were still taking up a lot of my mental focus.
The memories I had lost during the night were like ghosts, only appearing when something triggered them to action.
”SEAN!!” A girl with long black hair called out as she ran towards me. The girl wrapped her arms around me and gave me a bear hug.
The ghosts of memories past were a bit slow on responding to this one.
I stiffened, as my mind tried to remember who this girl was and understand why she was hugging me. Just seconds later, the memories emerged and I remembered Suki, and I returned her hug.
Things were never the same though… She had felt me stiffen, and suddenly she had realized that there might be days in the future where I wouldn’t even be able to remember the faces of the ones who loved me. She wasn’t quite yet to go through that. I never did get another hug from her, and although we maintained our “just friends” status for many years, we never made it beyond “just friends”.
She moved away from Washington a few years ago, and just recently I got an email from her. She’s been dating someone else for several months and he had just surprised her with ‘the question’.
They were engaged.
They got married last year.
Chapter 8 – From Washington to North Carolina to Colorado to Washington to Colorado
My parents still lived in North Carolina, a state that I had shunned some six years before. I loved Washington State and wanted to stay there. I had my own apartment, which for a time, I lived alone in. Bachelor life is not entirely easy, but having failed supremely in the girl department, I was definitely twice shy.
However, my difficulty eventually turned into total permanent disability, and eventually it conspired against me to remove me completely from the work force. My memory was the culprit. Short-term and long-term memory loss made it nearly impossible to hold a job for long periods of time.
I had excellent job skills, and a dynamite résumé. I had no trouble finding jobs, but I couldn’t hold a job down for more than two months. Once my employer realized that I was having trouble retaining all the on-the-job training I was taking in, I was fired, and had to start looking again.
Eventually, I started having trouble paying my rent, and when my lease expired I was not given the option to renew it.
I moved back in with my grandparents, which was to be a temporary solution. It kept me from having to live on the street.
I had just left my grandparents six months before (when I had first started living in my apartment) and my grandparents had just gotten used to living in a house that did not include me. When I moved back in, I realized that I had to move again. My grandmother began to treat me like an intruder in her house, invading her privacy.
Hope came in the form of a phone call from my parents who announced that they were moving to Colorado, and were selling their house in North Carolina. They wanted me to move back with them and help them with the moving drive out to Colorado (they needed a backup driver).
They sent me airfare and I flew back to North Carolina and lived with them for a few months.
We packed up all the belongings in the house into a RYDER truck and closed the sale on the house.
Our road trip to Colorado was almost simultaneously exciting, depressing, tragic, and wickedly funny (but that’s another story). Sufficed to say we made it.
My new plan was to live with my parents in Colorado, find a job (hopefully one I could keep), and eventually help them as they built their new house. Now life conspired against me for a totally new reason.
There were no jobs in the area of Colorado my parents moved into. In fact, there were no jobs in Colorado… PERIOD.
I began to yearn for the life I had back in Washington, because despite the fact that jobs had not been steady, there were plenty of unsteady jobs there. And I rationalized that, with state aid, I would eventually be able to find an apartment.
After a few months of futile job searching, I called my grandmother back up again and proposed coming back to Washington, living with them and helping them out again. Eventually, my grandparents accepted and for a brief period I moved back to Washington.
However, my disabilities were even more severe than I had originally anticipated and were just getting worse. Eventually, after a near-miss with a school bus, I decided that my seizures were too severe for me to be driving anymore, and I was fired from my last job because I couldn’t find a ride to work.
I started having trouble walking, and was given a cane to help my balance.
Despite the fact that I had been living with my grandparents for the better part of six years, my grandmother couldn’t wrap her mind around the fact that I was disabled (how dare I be disabled when she was four times my age and doing just fine). There were some people who didn’t understand me and let it go at that. My grandmother didn’t understand me and persecuted me by trying to convince me that it was all in MY head, and she continuously tried to force me back into the mold of someone who was healthy.
Almost a year to the date that I had moved back to Washington, my grandmother had to go in for knee-replacement surgery. My mother came from Colorado to temporarily help out while she was in the hospital.
Just a note: my mother and grandmother get along nearly as well my grandmother and I get along (great from a distance, not too well up close).
Tensions were running high when grandma came home from the hospital. Finally, two days before my mother was due to leave, my grandma started swearing at my mom for no apparent reason.
For some reason, seeing my grandma swearing at my mom touched me very deeply. I saw myself in my mom, realized that I too had been a target of this verbal abuse for some time (but having a shell made so tough by a life of disability and pain, I had just shrugged it off).
The argument ended with Grandma saying to my mom, “You’ve always been the cause of the problems in my life and I wish you would just leave.”
To which Mom replied, with tears, “I will be… in two days.”
And I piped up, “And I’m leaving with her…”
I'm not sure why I said that, but I was suddenly filled with a desire to remove myself from this situation by coming back home with my parents. And so, after only another year in Washington, I found myself packing again to leave the state I loved to move back to Colorado… where I have lived since.
Chapter 9 – Limitation
Colorado was just like I remembered it.
Barren, desolate, no jobs, and high prices (mainly due to the lack of competition in this barren area).
However, that wasn’t the only thing that Colorado was lacking. I found out the other thing when I went to apply for state aid in Colorado.
Colorado is nearly bankrupt, and as a result the state aid that I was had no trouble getting in Washington was extremely limited to me in Colorado. In Washington, I had been getting excellent health care and a food stamp and small money allocation every month ($300 cash, $250 food stamps, nearly unlimited medical care). In Colorado, I was reduced to basically half of that… ($200 cash, $120 food stamps, extremely limited medical care).
I was relying on a state that couldn’t give a darn, and wasn’t out to help me in the least.
I begged them over and over to help me find a doctor, but no answer was forthcoming.
Eventually my seizure medication, and migraine medication that I had brought with me from Washington ran out completely, and at that time I had no doctor to write me out a new prescription (there simply are no neurologists in the area where I live).
Without my medication, my problems got 1000 times worse. My seizures increased from 4 a day, to nearly 40 a day. My memory loss was rampant. Even with my walking cane, my balance was shoddy at best, and I started falling again. I became a virtual recluse in my room, to embarrassed to go out and face the world with my disabilities. This led to severe agoraphobia-like symptoms where I became afraid of leaving the house and facing other people. I felt more comfortable at home, in my room, in front of my computer. I began having symptoms of escapism, and I became wrapped in a virtual cyber world, unable to face the real world for long stretches of time.
My problems continued getting worse. I was still unable to find a doctor, and the state of Colorado was not helping me in the least.
My seizures soon topped 60 a day, with frequent memory blackouts. My life began to revolve around my computer. It helped me remember things and keep things in order. It became my life… then, tragically, it crashed. The hard drive must have gotten some of this voracious Colorado dust in it that corrupted the hard drive.
My life became a wreck. I couldn’t remember crap without my computer there to tell me, and my memory problems started playing havoc between my family and me. Finally, my dad stepped in and let me use an old hard drive he had until I could purchase a new one.
My life returned to some semblance of order, but it wasn’t like before. It took me weeks to put all the programs on the used loaner hard drive that I had had on the old broken hard drive. I lost so much… so memories that I hadn’t thought to backup anywhere else… so many reminders that I kept tripping over unseen, remembering only at the last minute.
It seems that people will only notice you need help once you transcend to the ridiculous, and this was the case with me. My agoraphobia was serious now, my seizures finally topped about 80 a day, my migraines made life unbearable, my depression was unbelievable, and suicidal tendencies had once again crept into my thoughts.
Finally, the state of Colorado noticed that I had a problem, but they grossly misrepresented it still to make it appear as if it were a minor problem. They finally sent me to a doctor to be evaluated, which allowed me to get my medication, and an observation plan for medical care.
But the damage had been done. My period without the medication had resulted in my medical condition slipping into worse areas. Even now that I’ve been taking my medication, it no longer completely takes care of the seizures (as it had before). Although the seizures dropped in number, I was never restored to the amount of health I had had before. I was still having at least 20 seizures a day (perhaps not major, but 20 minor seizures is still a problem). My migraines are barely controlled by my medication now. And my agoraphobia rears its ugly head some days, making my life very difficult.
I got one strong supporter in Chris Keilman at Options for Long Term Care. When I was too tired to fight or needed help in the fight, Chris was there to help remove obstacles and push until I had what I needed. She has been such a big help in my life, words cannot describe.
And still, Colorado, and Social Security, try to deny that there ever was a problem. I have been living on $200 a month for almost a year now, and I have to fight for every bit of help I get. And the fight goes on.
PART 8 – Reinventing My Life
My life has come down to four words.
Reinvent and Restore… Adapt and Overcome… That is my mantra, if you will.
Every day when I wake up, my mind is blank (except for the car accident). I have post-traumatic stress disorder, autism, depression, epilepsy, seizures, difficulty walking, amnesia (short-term and long-term), chronic migraines and suicidal tendencies and am a certified schizophrenic.
So who am I…? I still don’t know… Doctors and employers have asked me so many times, “Where do you see yourself in 5 years? In 10 years?” My response is always the same. Every person rates where they are by where they’ve been. If I have no memory of where I’ve been, how can I know where I’m at, or where I’m going to be? I wake up every morning a blank slate with no memories; some memories return during the day, some don’t. Some memories return on some days, and don’t return other days. Every day I wake up and ask myself, “Who am I?” These changes affect my personality on a day-to-day basis.
So in the true spirit of reinvent and restore, I wake up and ask myself, “Who will I be Today…?”
My problems have not gone away, but I have gotten very skilled at hiding them from others. I applied for Social Security disability three years ago and have been fighting the government for all the help I can get ever since. Having to fight for help for so long has depressed me very much, but in retrospect my depression is no different than any other time in my life.
So I was talking to my grandmother one day on the phone, and she mentioned how a local writer had finally gotten his book published. She was very proud of him. I imagine she must have known him for years, probably knew most of the stories he had to tell about getting his book published, heck, she might have been in a few of those stories herself.
Then she turned the tables on me and said, “You know, you should write a book about your life.”
That was where my train completely de-railed… “Huh?”
How do you write a story about a life of memory loss and medical problems?
“You should write a book about your life,” she said. “You’ve got enough experience in writing. And it’ll make people laugh.”
It’ll make people laugh!?! Was that a compliment or an insult?
“Alright. I’ll think about it.”
And here you sit, reading the result of my grandmother’s suggestion. What did you think? Were you appalled by what I went through? Did you laugh? Were you encouraged to keep going in your life, knowing that others have been there before you?
Disability can be difficult at times but it results in only two outcomes. It will either kill you or turn you into a fighter extraordinaire – a phoenix born from the fires of Hell. Every day has become a new day to reinvent my life. Unfortunately I may not remember the invention tomorrow. But I will continue to adapt and overcome as I reinvent and restore my future. The fight goes on, and so do I.