The first time I saw Alan* I assumed he was tripping on acid.
He was sitting on the steps of the coffee room. He looked out at the street quietly, except for when he would burst into laughter and sentence fragments for no apparent reason, with a wild look in his eyes. I smiled as I passed by him.
The coffee room — a casual local hangout in the small town I had just moved to — was owned by his mother, Anne, and she lived next door to it, in the same building. Alan was a regular fixture there. We learned each other’s names and I quickly understood that he hadn’t been using psychedelics that first time I saw him. Something else was going on.
A few of us would be sitting around having a relatively normal conversation when he’d gaze past everybody and hiss, “Stop it. You stop that, he’s fine. He’s fine! No. You’re crazy.” Followed by a silence, and then his distinctive guffaw. Yaheyyyo!
He had a difficult time staying present in conversations, but some days were better than others. One time he went into his typical arguing-with-nobody pattern, and when he came back to reality he said “I’m sorry, Dana. I don’t mean to be rude. There are people around me that I talk to and I know you can’t see them. I call them my distractions.”
He said it was OK to ask questions about it, which I occasionally did from that point on.
I once witnessed him struggling to use the steam wand of the espresso machine. He grew increasingly distressed as his milk failed to froth. “IT’S FUCKING BROKEN! I BROKE IT!” he shrieked, as he dumped the milk down the drain, refilled his mug, and tried over and over until the gallon was empty.
I’m no psychologist, but based on my observations and his answers to my questions, it was apparent to me that he suffered from schizophrenia.
Major symptoms include hallucinations (often hearing voices), delusions (having beliefs not shared by others), and disorganized thinking. Other symptoms include social withdrawal, decreased emotional expression, and lack of motivation. (wiki)
It seemed that Alan was constantly contending with the distractions that surrounded him. They were often malicious, telling him cruel things, casting doubt on all of his interactions, telling him that he should die.
I was fascinated and disturbed by this, so I did some more research. I watched schizophrenia simulation videos. I joined a subreddit centered on schizophrenia. I asked questions to people who had known Alan for a long time.
His family thought he suffered from “multiple personality disorder” (now known as dissociative identity disorder), a condition in which a person switches between multiple personalities that are not aware of each other. Sometimes his distractions would “possess” him and his voice would sound different, but I saw no sign of personality splitting. He was clearly having hallucinations of external characters which he struggled to distinguish from reality.
I wish I could have known him in his younger days. He’d been a child prodigy of sorts, well known for his captivating singing voice and theatrical performances. He was well-read on the classics, and highly educated.
Then he joined the Navy and went to boot camp, where he faced severe harassment and violence from the other recruits; he was a small man, and probably gay. He came home and was never quite the same. Perhaps this trauma played a role, but schizophrenia tends to claim its victims — about 0.5% of the global population — in their mid-20s regardless of what their life experiences have been so far. It might have happened anyway.
Alan would often walk back and forth on the main street between his mom’s house and his aunt’s house. He paced slowly, stiffly, looking straight ahead, his arms unmoving by his sides. He was often silent, or murmuring things — but as often as not, he’d be screaming at the top of his lungs. “FUCK YOUUU! FUCK YOUUU! NO! I’M SICK OF YOUR SHIT! LEAVE ME ALONE! I’LL FUCKING KILL YOU!”
As violent as his screams became at times, he was peaceful in his actions. I never saw him touch anybody or heard stories of him being dangerous. It was safe to walk past him on the street even in the worst of his episodes, but the tourists didn’t know this, and he had the police called on him many times. They knew him well. The whole town was familiar with him.
Alan used to live next to his mom in a manufactured home, but she converted it to a vacation rental. Sometimes he lived in a hotel room, or in another semi-assisted living situation, but would eventually be evicted under accusations of theft or disruption. Other times he would be arrested and spend time in jail, or in a psych ward, and when he came back he was quiet and sedated because they’d given him a long-lasting anti-psychotic shot. He hated this kind of medication, which made him feel not like himself.
He preferred to self-medicate — with weed and methamphetamine and I don’t know what else. Eventually the anti-psychotics would wear off and he’d be back to screaming obscenities as he paced the streets.
When he wasn’t institutionalized in some way, Alan was my neighbor. I lived in my RV in his aunt’s driveway — she was my co-worker and we got along well. Her house was on a piece of family property which had been divided into several lots. On the other side of my RV, in the backyard of another house in the next lot, was a small, run-down trailer, which lacked running water and other basic amenities. This is where Alan was allowed to live. The trailer was about 50 feet from my RV.
He was a frequent cannabis user, and one day he was asking around at the coffee room like he usually did. Nobody had any to share with him, and they seemed tired of his repetitive mooching. He walked away and I felt bad for him so I caught up with him half a block later. “Hey Alan, I don’t have any weed on me, but come over to my RV and I’ll pack a bowl for you.”
That was the first of many times that he came over to smoke. He rarely stayed longer than 5 or 10 minutes. He’d knock, saying that he just wanted to say hi, and I’d let him in. I could tell he was making an effort to ignore his distractions and have a conversation. I’d ask some question about his day, which was usually a dead end; and before too long he’d ask “hey, can I hit your pipe?” and I’d pack him a bowl, or let him try a resin hit if I didn’t have any flower. We sat in silence a lot, which was fine, then after a few minutes he’d start arguing with the people I couldn’t see. It seemed like they were trying to convince him that I was a threat or that I didn’t want him around. He’d usually get embarrassed, apologize, and leave.
I was conflicted about whether or not I should allow him to smoke with me. I knew cannabis and schizophrenia didn’t mix well. I didn’t want to hurt him, but he knew what he needed better than I did, and he was going to find it from somebody if he wanted it. If it helped him feel better, maybe it was for the best. Besides, he didn’t have many people to spend time with, so at least I could give him a peaceful place to go for 10 minutes and some non-judgmental company.
During one of his visits, when he was in his most lucid state, he looked at me with eyes full of emotion. “Dana, I wanted to say thank you because you’ve always been good to me. And I really appreciate it.”
I wish I had thought of a more meaningful response in that moment, but I probably said something like “yeah, man, of course.” It caught me a bit off guard, and made me feel warm and sad at the same time.
As much as I was glad to provide him a safe space, I’m introverted and the near-daily visits were a bit much for me. I don’t always know how to say no, especially to someone who needs so much and asks so little; how could I justify turning him away in order to maintain a slightly higher comfort level for myself?
But I left town for a couple of weeks and when I came back I told him that I couldn’t smoke him out anymore. I didn’t have any weed left, and I was trying not to smoke it myself, so I’d stored away my pipe and everything. I told him he was still welcome to come over anytime if he wanted to hang out. All of this was true, but I suspected that setting this boundary would stop him from coming over so much. He never came over again, to my memory.
But I still heard him every time he knocked on his aunt Marge’s door. She cared about him, and would say yes to as many requests as she could — Can I have a shower? Some water? Alka-Seltzer? Food? Sure, Alan, come on in. She was there for him.
Yet she didn’t always want to be. She was bad at saying no, too, and at times she felt anxious because she didn’t have the privacy she wanted in her own home. Sometimes he’d come by late at night. He’d ask for a shower and lose track of what he was doing in the bathroom for long periods of time. Sometimes she got frustrated and kicked him out.
One night I was awake at nearly midnight and I heard him shouting outside. “He’s just jacking off! He’s just jacking off! You’re fagging out!” I wasn’t sure if he’d seen motion from my RV when I was walking around, or if it was completely unrelated to me. A few hours later: “NO! You don’t just KILL PEOPLE!” I certainly hoped that debate was not in reference to me. Outbursts like these were common and woke me up at all hours of the night, but I got used to it.
He flew, alone, back to his hometown to visit his father and his old friends. Marge told him, “maybe on this trip you can leave your distractions behind”, which to me was a bit like telling an Alzheimer’s patient they should try not to forget things. From what I heard, he was arrested shortly after landing (I imagine for scaring people on the plane) and he ended up in a psych ward. He was gone for almost a month.
As much as Marge was sorry he’d run into trouble on his trip, she also dreaded the return of his screaming and the unpredictable intrusions into her home. His absence felt to her like a weight lifted — she got her personal space back, her life back.
Another time, Anne took him to be observed for a 24-hour medical analysis. The doctors said they could find nothing wrong with him mentally or physically. Maybe he managed to appear neurotypical for 24 hours, but I doubt it. I’m astounded at how this could have happened. He needed help, and not just mentally.
He complained of intense pain in his stomach, maybe ulcers, which is why he often wanted antacid. He started to look sick. Gray. Old. Stony. He was in agony inside his own body, and the world he lived in was full of evil voices.
It’s not hard to imagine how alone he must have felt. Not a single person could see the world the way he did, and few were willing to try.
One time after a particularly bad episode in Marge’s house, he stood in the driveway and screamed:
EVERYONE JUST WANTS ME TO DIE!
It chilled my blood because, in a sense, I knew he wasn’t wrong. And judging by how much worse he’d been looking, it seemed like it might happen.
Nobody was actively thinking “it’d sure be great if Alan died.” But it was heartbreaking not knowing how to help him, watching him being tormented day after day. Though we felt bad for admitting it, the times when he was institutionalized came as a relief. Someone else was watching over him. We had peace again.
I think if any of us could have lived a day in his life it would have broken us. To be surrounded by sinister apparitions, perceiving them as real, hearing them say critical, threatening things. Of course it’s hard to get in the shower when there is a monster behind the curtain. Any of us might have been yelling in the street, or self-medicating for an escape, in his position.
What is left of life when you take away all meaningful friendships, all pleasure, and even the privacy of your own mind?
There were many times when he was in distress, yelling, and I didn’t come out of my RV. I didn’t know what I could do. I’m not trained in crisis management and maybe any intervention I could have attempted would have backfired.
Maybe I was afraid that if I helped too much, he would become dependent on me and then I would be the one who had a hard time saying no. I had minimal privacy to begin with, living in an RV in a driveway, and if he’d started to come to me with every problem, any illusion of privacy would have vanished.
I didn’t have the perspective of knowing him in his youth. I only knew him for the last two years of his life. This lack of context made it harder to understand his trajectory, but it also let me see him with eyes unbiased by history.
According to Marge, he’d been spoiled growing up; the child prodigy, the popular actor. I guess he had ways of getting what we wanted. Maybe he could be manipulative.
Marge’s theory was that he’d gone to boot camp, been badly harassed and beaten up, and come home with PTSD; he fell into drugs, and maybe now he was exaggerating his problems to garner sympathy. Since he was such a good actor, he could play the role of the madman, he could speak in the weird voices, he could seem crestfallen if you didn’t comply with what he wanted. This sense of mistrust was at odds with her compassion.
Coming into his life at such a late stage, my perception of him was very different. I saw a man who of course wasn’t perfect, and didn’t have amazing coping mechanisms, but was doing his best to get through every day of mental and physical agony. What she saw as manipulation I saw as desperation.
I think Anne and Marge both understood there was a serious mental illness, but it was more comfortable for them to avoid understanding it. If they imagined he was simply acting out, being uncooperative, or perhaps the victim of addiction, they could continue to believe that this was only a hard phase for him and he might simply snap out of it. To fully accept the reality of schizophrenia would have meant coming to terms with the fact that he’d most likely never recover.
I left town for two months and in the middle of my absence I got a text from Marge.
Alan had been found dead in his trailer.
I was told that the autopsy blamed his death on an overdose of sleeping pills. I don’t know if that means it was a suicide, or if it was an accidental lethal combination with other depressants in his system.
Despite the premonitions I described earlier, this came as a shock to me, and I was shaken up for a while. He was only 38.
When I returned to town I talked with Marge about his death. Despite her sadness, it predominantly seemed like she was relieved by it, the same as when he’d been out of state. He was done hurting, he was in a better place now, and she could get on with her life.
Anne had a medium friend who told them she had talked to his spirit, and that he was happy for the first time in years, which gave them comfort.
As an atheist, that looked like an easy coping mechanism to me, a way to feel better about a situation that really has no upside. But was the sentiment wrong? His soul might not have gone anywhere better after death, but at least his tremendous suffering had ended.
Instead of a typical memorial service, a mourning parade of sorts was organized. 75 or 100 of us congregated to trace his typical route, the three blocks between his aunt’s house and his mom’s house, led by a small marching band. I stopped trying to hide the tears as they rolled down my face, both from the injustice of his life and from the intimacy of this community remembrance. After stopping at Anne’s house we proceeded to his favorite bar, where stories were told and more music was played by people who had known him for years.
I was distressed that his family seemed so happy and relieved in the wake of his death. But I had to entertain the question: When is death an acceptable solution to health problems that have no foreseeable route to recovery? How long should we expect people to fight? Where’s the balance between holding on to hope of recovery and simply putting an end to the misery?
These are the kinds of questions philosophers have disagreed about for a long time, and I don’t have any new insights to contribute.
One side of me is appalled by his obvious mistreatment. Alan was relegated to a dingy old trailer in a backyard while his mother rented out his old home to tourists, and it didn’t seem like this was strictly necessary for her own financial security, as she owned other properties and frequently enjoyed going on yoga retreats. She failed to understand his condition and connect him with the kind of help he needed. For all that she claimed to care, and all the ways she did try, Alan’s needs ultimately went neglected, and he died.
Yet I can also see it from a completely different perspective. I’m pretty close with Marge and I know that she has a compassionate heart. She did care about him. That’s why I stayed silent when she expressed her relief at his death, despite how wrong it felt. A lot of people who have his condition, and his history of drug abuse and jail time, end up abandoned by their families (and all of society) to live homeless on the street, where they are seen as the scum of the earth. While their treatment of him was not perfect, at least they were present and involved throughout all of his trials, which is more than can be said for many families.
At least in this small town, he could walk around familiar places, have interactions with people who knew him, and mostly be left alone even when he was screaming scary stuff. At least the police knew his history and could treat him more gently. At least he had a consistent place to sleep, and Marge could give him showers and meals.
So do you blame people for not doing better, or do you appreciate them for doing as much as they did?
I question my own culpability, too.
I could have sent the schizophrenia-simulation videos to his family so they would understand him better. There was nothing to stop me from cooking meals for him and bringing them over, or figuring out some activity that he liked to do and inviting him over regularly — or simply allowing him to continue smoking weed in my RV. Maybe I should have tried walking next to him in his most difficult episodes. It wouldn’t have saved his life, but it might have made things better.
Others have described a similar feeling of guilt, because we failed him as a community, because we crossed the street when we saw him coming, because we thought his suffering was inconvenient.
If that guilt drives us to ask ourselves how we can help the countless others who are still struggling around us, I think it is not misplaced.
Our community failed to find good solutions for Alan, but I don’t view that as purely our own fault. We’re part of a much bigger societal system that fails mentally ill people on a daily basis, through stigmatization, lack of awareness, and poor access to treatment. It’s not the family’s fault that an assisted living situation would have been prohibitively expensive, or that there wasn’t a better healthcare system in place to find a medication that could have worked for him.
It’s good to care for each other as much as we can, but we also need to ask more questions about the root cause of the problem.
Why do people fall through the cracks of our medical system and end up misdiagnosed for years and years?
Why does our society allow our most vulnerable people to endure homelessness, neglect, and early death instead of matching them with the housing and care programs they need?
What is it about our culture that leads Americans with schizophrenia to hear antagonistic, violent voices, while people with the same disease in other cultures tend to hear neutral or even benign voices?
As for myself, I hope that in the future I will be more willing to go out of my way to ease the pain of those around me.
I will remember Alan every time I walk down that small town’s main street. I’m glad his misery is over, but I will always wish we could have gotten our act together and helped him live a good life instead.
*All names have been changed to protect the identities involved in this true story.