SHATTERED IN THE NIGHT
Updated: Nov 1, 2019
My fiancé, myself and my two children had finally made the long 10-hour drive home safely without too much fuss, after having an extremely happy, jubilant, fun-filled week at Disneyland that summer of 1987. It had been a delightful and joyous experience for us all to vacation as a family for the first time, especially for my 8-year old daughter and 6-year old son. We arrived home just in time for Father’s Day and I was eager to go to my parents’ house for a BBQ and to wish my Dad a Happy Father’s Day. It was just a simple BBQ, where I might also get to visit with my siblings who might appear throughout the day and share the photos we had taken on our trip.
I made it to my parents’ house just in time to have the opportunity to visit with my younger and only brother, Mark. He had just moved out of my home a few months prior having stayed with me in between him changing residences. Mark had always counted on me to assist him with life decisions or advise him on the matters of becoming an adult and living the life he desired, and I was always pleased to be useful in that role. More than anything – he wanted a good relationship with family, a marriage and children of his own. Goals that he was on the way to achieving and so close to reality that he could almost reach out and touch it in his mind, so strong was his anticipation and eagerness to start his own life.
At my parent’s house, I felt anxious and extremely dismayed when I saw him pull up on a Harley Davidson motorcycle. I had previously lost a friend in a horrible motorcycle accident and I was very concerned about Mark’s inexperience with them. It worried me that he was a man with a slight build who might have trouble controlling such a big motorcycle. But, after visiting with him for a few minutes in the backyard while my Dad barbequed and Mom puttered about in the kitchen, I felt somewhat comforted when he said that although he only had the bike for 10 days, that he already had made up his mind to sell it. I sighed in utter relief and assured him that I thought he was making a smart choice and it was a good idea to sell the motorcycle. He then asked my Dad if he could bring the motorcycle to keep it in his garage until it sold, and of course Dad said yes. So, having that settled and feeling heartened that he had made the choice to sell it, we continued our lively, fun bantering back and forth, having a lovely afternoon visiting while looking at pictures of my recent vacation as the children ran around us laughing and playing.
Later that night, exhausted from our long drive home and then spending Fathers’ Day with family members, I had finally laid my head down to sleep around 11:30 p.m. I was awakened unexpectedly by the phone ringing at about 1:15 a.m. To this day - I cannot remember who it was that called me… only the dread I felt hearing the words, “You need to get to the hospital now before it’s too late!”
I jumped out of bed and frantically looked for something to throw on… my suitcase open but unpacked still on the floor. All the while, repeating in my head, “I have to stay calm and collected,” because that is what had always been expected of me by all my immediate family members and I was determined no matter how bad it was – that was how I had to be now. It was the only way I knew how to cope with emergencies, although I truly had no idea the extent of the tragedy that was unfolding already at the local hospital. I only knew that I had to get there as quickly as possible.
When my fiancé and I arrived at the hospital emergency room, I literally jumped from the car before it came to a full stop and ran into the building, almost knocking a nurse down as I tore through the doors. My parents were already there and by the looks on their faces I knew how devasting the night was going to be for all of us. My twin sister, Linda and her husband showed up soon and we were told of Mark’s horrific injuries. Although we all were in shock, the doctors needed our family’s’ decision immediately as to what they should do. His injuries were horrifying and beyond what anyone of us could even begin to imagine and the doctors refused to let any of us in the back with him. We were told bluntly that they could let him go now, or they could try to “Patch” him back together for his funeral. It was mentioned, as I remember it, that if there were the slightest chance of him surviving – that he would be 100% blind.
I asked the Doctors to give us a minute and then asked my Dad to come outside with me. Standing in front of the outside of the building, I watched my Dad stumble, lean and slide down the wall to the ground, as my Mom stood there looking numb and pale staring straight ahead... her eyes seemingly fixed on some non-existent horizon in the dark. Looking at him now it was readily apparent that this was not the Father I knew. He had always been one in his large extended family that so many others had turned to when in need. A self-made successful, decisive man of unparalleled strength and stubbornness of unlimited bounds. That night he was so different, and I think it was a definitive turning point in his life. His decisiveness and his spirit shattered that awful night in a few short minutes. Drawing on his cigarette while sitting slumped on the concrete, he turned to me. I will never forget his words.
“I can’t do it.”
I responded, “What can’t you do, Dad?”
“I cannot make the decisions.”
I then asked, “What do you need me to do Dad?”
Although it was unsettling to see my Dad like he was, I knew what I had to do. I told him, “I’ll do it… I’ll take care of everything” and I ran back inside the building to find the doctors. They brought with them a form for me to fill out and with a witness from the emergency room and my twin sister, Linda as a witness -- I signed the Medical Durable Power of Attorney and then turned towards Linda and said, “I have to give him a chance to live.” I put no lengthy, circuitous thought into weighing the pros and cons of my decision, but rather relied on what my intuition and gut instinct was telling me, as time was of the essence. To my relief, Linda agreed with me. There was no time to debate the merits of the decision… only a deep and unshakable love for our baby brother with the realization and conviction that we did not want to lose him that night.
Although the doctors assured our family that they would try their absolute best to save his life… I couldn’t help but see the doubt and concern in their eyes as they avoided looking at me directly. As they prepared and rushed into surgery late in the night with over a dozen doctors -- A neurosurgeon, 2 ophthalmology specialists, an orthopedic surgeon, an ENT specialist, 3 general surgeons, a dozen surgical nurses all almost tripping over one another, and more specialists on the phone… we settled our parents down in the ER waiting room to try to figure out what had happened in the few short hours since leaving the BBQ at their house.
It seemed that Mark had decided to drive his motorcycle out to the Moose Lodge Club where we had all been members for years, to pick up his station wagon that he had left parked there previously. He went in and had one beer with a few members who knew our family well. He was looking for someone to drive his car back to my parent’s house so that he could follow and leave the motorcycle there to sell by putting it in the local newspaper the next day. Apparently, he couldn’t find anyone willing or able that night to help him, so decided to leave on the motorcycle anyway and take the back roads to my home… just 10 miles away. He wasn’t comfortable driving it on the freeway. It was not unusual for him to show up at my home unexpectedly... Of course, he never did make it to my home that night.
On a long winding, two-lane, back road about midnight, he was traversing a S-curve in the road, when he saw headlights swerve into his lane and with no shoulder, he crossed the center divider line to escape a head on collision. He continued across a plowed-up alfalfa field, 120 feet in distance, before being suddenly and tragically struck directly in the face and across the eyes by a parked antique grain harvester sitting in the pitch blackness of a quiet country night.
A woman in a home nearby was still awake and heard a crunching of glass breaking in the distance - later discovered to be the headlight of his motorcycle. It was she that called 911 and reported a possible vehicle crash on the nearby property. The car that had swerved into his lane never stopped. When the paramedics arrived, she pointed across the dark field towards where she thought she had heard the sound. They immediately began searching with flashlights, but with only a sliver of a moon that night, they had great difficulty finding Mark. They searched for about 45 minutes… occasionally guided by the faint sounds of someone moaning.
Finally, when they found him - they were changed forever (they later told us) by what they found - A man so badly mangled and battered that he was almost unrecognizable as a human being… his face and head gashed open and traumatized beyond what a reasonable person could believe was survivable. His eyeballs were out of his head leaving open bleeding eye sockets with frontal lobes smashed in and many pieces of grey matter brain tissue scattered around him in the dark field. One of his legs was ripped open and shattered in numerous places from his crotch down to the ankle with the appearance like a rag dolls appendage. They loaded him in the emergency vehicle and set off for the hospital after placing his eyes and teeth on his chest – assuming they were transporting a DOA.
Then Mark spoke. With a broken jaw, no teeth, a destroyed face and crushed brain – he kept trying to repeat our parents’ phone number. It startled the paramedics into frenetic activity – suddenly racing to the hospital with sirens blazing. And so, began our family gathering that fateful night first in the emergency room and later in the surgical family waiting room piecing together what had occurred and what we should expect.
As a family, we did not leave the hospital again except for quick showers, for almost 3 months. We took turns when necessary outside of the Intensive Care Unit, ate every meal at the hospital, slept in armchairs or on the floor in waiting rooms. The first time we could see Mark was the day after the 14-hour surgery when no one expected him to survive. I remember them telling us before going into his room that we should not expect to recognize him as we had known him. Still, when Linda and I entered his room in ICU after our parents had seen him, it was almost too much to bear. No… we did not recognize him. His injuries were so extensive that at first glance I was inclined to say that is not my brother, but someone else… it had to have been a case of mistaken identity.
His head and what remained of his face was swollen twice the normal size. Caked, dried blood covered his sunken eyelids now stitched closed and his swollen frontal lobes protruded out above where his eyes had been almost grossly, Neanderthal in appearance. His face was held together in mismatched zig-zag patterns of stitches and hundreds of wires below the surface of skin holding it all together. His nose was flattened and crooked and his jaw was wired shut after teeth had been surgically put back in, and he had a trach tube in his throat. His shattered leg was uncovered and exposed after having a metal rod put in the entire length of it to replace what once was bone to hold his leg together. Because he had been thrashing about in the bed after recovery, and even kicked a nurse, they had both his arms and ankles tied with restraints.
Seeing him like this… all I could think of at first was, “Oh my God… what have I done?” How, I thought, could he ever survive this? What kind of life will he have now? He was still our brother, and anxiety and fear of what the future held was pushed aside while we struggled to help make him comfortable and assure him that we were there for him, not really knowing if he could hear us or understand what we were saying. The closer we got to him – it hit us… The smell… of death. Rotting flesh that 24 hours before I had hugged and held in my arms, laughing saying goodbye… I’ll see you later. I’ve never smelled anything like it before nor have I since – it is such a distinctive smell.
One day, my father and I were walking down the hallways of the hospital trying to get outside if for only a moment to catch a breath of fresh air so that maybe we could manage to force ourselves to eat something, and we ran into the neurosurgeon who headed up the team that first night in the operating room. My Dad tried to thank her for saving my brother’s life, but she immediately began shaking her head no… she insisted that regardless of their efforts Mark surviving was entirely out of their hands and they would not - could not - take the credit for saving him. Yes, he was alive, but it was a miracle. Every single doctor said as much.
As Mark started stirring into consciousness, it was apparent how frightened and miserable he was. One minute in his mind – on the road…on his way to my home - the next awakening in an unfamiliar bed with unfamiliar sounds in extreme pain, blind, unable to talk, unable to move due to the constraints, confused and in unadulterated agony.
It took almost 3 months for him to heal enough to even begin the real recovery. Those many weeks we never let him be alone for a minute – rotating in and out of his room, sleeping in recliners or chairs in the waiting rooms, sometimes crying unapologetically regardless of those around us or laughing and telling jokes when rummy from lack of sleep. Extended family and friends visited us in the waiting rooms, while my own children came to visit me and play around us thankfully oblivious to the tragic sadness we were experiencing. We ate all our meals in the small cafeteria with hospital staff who soon knew all of us by sight and our names. We were often given compliments about what a strong family we were and how staff members had never seen a family refuse to leave a patient in Mark’s condition alone. Quite the opposite they had told us – most family members could not handle the tragic consequences of such horrendous injuries. To us… it was unfathomable to consider leaving him alone for even a minute. It just never crossed our minds.
In July, about a month after the accident and surgery while Mark was still in the Intensive Care Unit, the air conditioning went out completely in the hospital. It was sweltering in the ICU, so Linda’s husband ran to the local shopping center and bought a couple of small battery-operated fans to try to cool Mark’s room since we weren’t allowed to plug in anything electric. Linda and I stood on either side of Mark’s bed fanning him with magazines for over 7 hours till we could barely hold our arms up anymore, they ached so… But nothing at the time could have stopped us from trying to ease his suffering.
As he became somewhat more coherent it was obvious that he was confused but kept motioning in such a way that we knew he was wanting to communicate better, so we gave him a pen and paper on a clipboard to see if he could write. Not only could he write but for the first time in years… none of his previous dyslexia was being exhibited. Somehow writing without a visual had blocked that annoying fact of his life. It was nothing short of amazing and he was able to finally communicate with us in a meaningful way.
It was at this time though, we noticed that his understanding of time or the chronology of events just prior to his accident had been confused. He insisted he wanted to see a specific girl over and over - even though he had broken up with her a couple of months before his accident. We had talked about it before his accident happened and he absolutely wanted nothing more to do with her because she had cheated on him. Because he was so adamant though and not wanting to upset him, we agreed to try to find her.
She lived up in the Sacramento area and after a little investigating I drove there with my Mom to find her. When we did find her and told her what had happened, she didn’t seem all that affected by it, but I chalked it up to possibly feeling shocked and maybe unsure of how to respond to us approaching her. We let her know where the hospital was, and that Mark wanted to see her. Fine, I thought… if this would make him happy then I would allow it for now. But I still had my reservations about her given that they had broken up.
She did show up the next day at the hospital and we hovered around Mark’s room again to protect him from whatever might come about. It was very uncomfortable for my Mom and us. We knew how Mark had previously felt about her and their break-up and was worried for good reason. Within two days she was announcing that they were going to find someone to marry them right there and then in the hospital! I tried talking to Mark but it was so obvious that his memory was distorted, and he did not remember breaking up with her. I was having a really hard time understanding what her motivation was and felt very cynical about why she wanted to move so quickly into marriage when he couldn’t even talk yet.
I was right to be skeptical about her motivations. I was getting lunch and one of the workers in the cafeteria called me aside. He began to tell me of a conversation he had with her just hours before. Basically, she was almost giddy stating how she had just figured out a sure-bet source of income – the SSI that Mark would get once out of the hospital. I think she thought it would be much more than what it was. She was quite proud of herself and was bragging that she had lucked out and Mark had not remembered breaking up with her. The cafeteria worker was disturbed by what she had said and felt obliged to let me know what was really happening.
My first inclination was to protect my brother, as I went looking for her in the hospital. I found her in the Chaplains’ office trying to get a priest to come to the hospital ICU to marry them. I immediately grabbed her by the arm and practically dragged her down the hallway ignoring the wide-eyed looks I was getting from now familiar staff members. Taking her outside I let her know in no uncertain terms that I would not allow her to move forward with her evil little plan which I knew all about.
After having an angry confrontation with her, I forbade her to enter the hospital again and went back in to find the security guard who I informed about the situation and who assured me she would be removed from the premises. It was the first of many times since then that I would have to intervene between other women and Mark because so many tried to take advantage of him or hurt him. Luckily, a few days later, Mark remembered that he had broken up with her and he stopped asking for her.
The last few weeks that Mark was in the hospital the trach was taken out and he was finally moved to a room on one of the wards. We stood guard over him and at his doorway, cautioning everyone, staff or otherwise, as to how to proceed before entering his room… making sure that no one would ever just walk in and start touching him or drawing blood without announcing who they were and why they were there or what they were about to do to him. We made big annoying signs and placed them over the head of his bed and on the door to his room… “PATIENT IS BLIND! DO NOT ENTER OR TOUCH HIM UNLESS YOU ANNOUNCE YOURSELF AND WHY YOU ARE HERE!” Most of the staff seemed grateful and appreciative that we had taken those actions as they had never had a patient who was suddenly blinded by an accident.
Up to the point that Mark’s discharge was looming we had put most of our focus on his new blindness and protecting him. We had yet to deal with what the effects of the traumatic brain injury was going to be in the long-term as the doctors had been taking a wait and see approach, with us following suit. The closer to the discharge, the more I became his de facto social worker of sorts and began researching and trying to get him signed up for SSI benefits, medical coverage, etc. The hospital appreciated those efforts as well because the Medical Social Worker on staff also had no experience or even information for a patient in Mark’s condition. I provided the hospital with the much-needed information and resources. We were naïve in some ways… believing still that maybe Mark could live a somewhat normal life albeit without sight.
When his discharge seemed imminent a meeting was called by the neurosurgeon, my Father, and myself because I still had the Medical Power of Attorney and had been making all the medical decisions up to that point. We met in a tiny little conference room off the main hallway of the hospital administration department. Thinking that it was to discuss Mark’s recovery and possible rehabilitation after leaving the hospital, I went into the meeting with those exact expectations.
The doctor started out by explaining the type of brain injury that Mark had sustained wanting us to fully understand the scope of what that meant. She informed us that Mark would not be released to us, but rather that it had been arranged for him to go to a State Rehabilitation Center in Albany, California where he would most likely have to live out the rest of his life. All along I knew my Father was not accepting the fact that Mark’s brain now functioned very differently. I could see the changes, but he was in denial. He had continued to try to reason with an unreasonable mind through the duration of Mark’s hospitalization. And he had made promises to Mark that we could not keep.
During that meeting, the neurosurgeon told us what to expect of Mark’s condition. We were told that because of the frontal lobe damage and brain tissue loss that Mark’s recovery from the TBI would be difficult as that is the area involving emotions - especially anger, impulsiveness, inhibition, and filters for behavior and what is appropriate. Basically, it would likely take up to two years for his brain to heal and to re-learn appropriate behavior skills. After which, she informed us, we would most likely start to see the “old Mark” that we knew so well… maybe just glimpses, but perhaps an extended period where he might even be able to live independently with assistance. But, then due to the area of the brain that was damaged so extensively and with age… his mental health would most likely begin to decline… even into serious mental illness.
This information did not sit well with my Dad at all. His natural stubbornness and state of denial at the time made for a toxic and unhealthy form of decision-making. He was not going to accept what the Doctor had told us. He had already ascertained that I was accepting the prognosis and immediately asked if I had the Medical Durable Power of Attorney papers with me. I always had them with me in case I needed to show any doctor so when I said, yes… he asked to see the papers and I pulled them out of the briefcase I always carried around the hospital along with all the medical records. He snatched the papers out of my hands and ripped them up in front of the doctor and said that’s the end of that. He would be taking Mark home against doctors’ advice and my Mom would care for him.
He made that decision on his own and was adamant. My Mom tried her best to care for Mark at home like a nurse would and struggled with his constant attempts of suicide and unpredictable behavior. Many people had well-intentioned suggestions or advice that very quickly turned to more judgment about his behavior than understanding what caused it. Tough love was brought up repeatedly. Oh, the friends he chose were to blame… perhaps we all should join something like Al-Anon (even though he wasn’t an alcoholic) so that we wouldn’t “enable” his behavior.
All the while I am questioning and asking – but what about the brain injury? What about what the doctor said about mental health decline? Where did that factor into all the judging that was occurring from extended family, friends and even strangers? What did they really know anyway? And so, when we didn’t agree or tried to take a different path the degrees of separation really began and our family structure dwindled down to only myself, Linda and our Mom trying for years to help Mark and keep him safe from himself and from others.
Our Dad died suddenly of a massive blown aneurysm 6 years after Mark’s accident when he was just 55 years old, and my husband died tragically only a year and half after my Dad. It has never been an easy journey for Mark or the three of us who were left to care for Mark, and indeed the neurosurgeon was surprisingly accurate in her predictions about both his recovery and decline into serious mental illness. And thus, began our lonely, desperate, frustrating journey down a long, winding road filled with eerily similar obstacles, to the curving, unpredictable, dark country road where Mark’s destiny had been put into motion. Here we are more than 32 years later… still on that road looking for answers and trying to rectify our Father’s misplaced pride and the wrong choices that he made due to not accepting the reality of his son’s life.
The truth is that even without the accident and the traumatic brain injury, it is possible that Mark may have still developed Schizophrenia. Denial saves no one from serious mental illness… And acceptance of it puts the few devoted family members on a long, painful journey fraught with isolation from many other family members and friends with mostly insurmountable obstacles due to archaic laws, apathetic lawmakers, and a largely judgmental and unforgiving society whose own fears of the seriously mentally ill continues to punish them rather than promoting the care that they need through no fault of their own.
There is currently a rallying cry across our nation – "We can and must do better!" Mental health advocates and family members of the Seriously Mentally Ill march forward ever hopeful - that others will join in their efforts and stop ignoring the plight that affects so many… maybe even you or a loved one someday.
Mark currently lives on the streets of his hometown… and has for the last 13 years. Throughout his mental health decline and subsequent diagnosis of Paranoid Schizophrenia with Anosognosia (lack of insight of his own TBI and Mental illness) my twin sister, Linda, and I continue to fight to get Mark the care that he needs. It has been an uphill battle for more than 32 years. Mark is delusional most of the time and is a danger to himself and others as demonstrated repeatedly by him walking out in front of traffic almost causing accidents and most recently actually falling into traffic and being struck by a car and left with no medical aide because his civil rights are still intact and he could say no to help that is offered, although he doesn’t understand the ramifications.
After being struck by the car and remaining on the streets for another two weeks… Linda managed to get him to a hospital where he was rushed into surgery with life-threatening injuries and infection. After local and nationwide outrage over the hospitals’ willingness to not have him declared with diminished capacity and in need of one of us to be his Medical Power of Attorney he was sent to a Board & Care home with no skilled nursing for only 30 days. Those 30 days are almost up… and he will be returned to the streets to live and die “with his rights on.” And our family still feels “Shattered.”