Thursday, September 22
Journaling has never been my strong suit. I remember after mom and dad died my therapist suggested it as a way of helping distill my thoughts. Help ground me by putting all the noise in my head down on paper. She said to treat it as a new friend and tell them the story of what is going on, how you feel, etc.
I think it’s colossal load of crap.
But what the hell. At this point, I honestly don’t think it can hurt. So here it goes…
I guess I should begin by telling you a little about my brother Christopher.
Chris is 24, nearly 15 years younger than I am. He was the late life surprise my parents were never expecting but were so very thankful they got. For a number of different reasons, I can honestly say that he is one of the most amazing people I have ever known in my life.
He will never lie to you. Ever. If he makes a promise, no matter what it is, he will keep it. He has never been late for anything in his life. This is in spite of, or most likely because of, his challenges. You see Chris is both autistic and developmentally disabled. As anyone who knows anything about autism will tell you, there is a huge range wherein a person can fall on the spectrum and big variety in how severe their specific characterizations can be. When it comes to that aspect of things, Chris is actually doing pretty well. He is able to communicate effectively. In fact, his language skills are quite good considering his developmental issues. Regarding that, his doctors, though reluctant to put a specific number on it, will say his development is at about the 8 year old level. He is able to be left alone, quite happily I might add. He can, with direction, do a decent job of caring for his own needs. All in all, things for us go pretty well.
He is a man of patterns and order. He loves his routines and finds security in the familiar. He is averse to physical contact, but thrives when surrounded by auditory and visual stimuli. When I get home from work, he is always – and I mean always – sitting in his room. He has his TV going, his small clock radio on to a classical station, and the computer open and playing one of the many YouTube channels that specialize in video of Fire Engines responding to calls. I decided long ago that the extra money it costs me on the electricity bill each month is more than worth it for the comfort he finds in it.
He was so young when I left home and went to college, but from the time he was an infant he and I shared a special bond. So I made sure to visit weekly and spend every holiday with him and my folks. I knew that being part of my brothers’ life was important and I always found myself being fiercely protective of him.
A year ago, I had traveled the couple hours from my place in the city to spend the weekend with Chris and my folks. As always, Chris welcomed me with a half-smile, a half second of eye contact, and a “hi brother”. For Chris, this was effusive. After a nice family dinner, mom and dad decided to take advantage of my presence for a bit of a night out. Chris can be left alone just fine, but it was nearing bed time for him, and he needs a bit of direction when it comes to his nighttime routines.
They left for a coffee and a quick scenic drive.
They never came back.
When the police came by the house they said it was a car accident. But as the days went on and the details became clear, I seriously questioned that conclusion. Their car was found in the middle of a country road. It appeared to have been in an a significant accident… but zero trace of another car was found. No skids marks. No debris. The reason that it was chalked up to an accident was the damage to the car. But even that was odd. It was damaged on all sides. The damaged looked… uniform. Like the car had been put in a crusher. My parents both died instantly from internal injuries. Tests showed Dad hadn’t been drinking and wasn’t on any medication. That was no surprise to me. Dad was always extremely cautious in his driving and would never drive in any kind of a compromised state.
The only thing they could figure, and the final conclusion of the investigation was, that he fell asleep and rolled the car. This despite the fact that there was, again, zero evidence of this. They just couldn’t come up with another explanation. The report on the crash indicated that when EMS arrived on scene, the speakers in the car were blasting out static at full volume. This was despite the fact that the radio was disabled and the electrical system had been fried. It’s funny I choose to type all this out now, as I have to admit to myself that I have been thinking about the accident a lot lately. The first anniversary of it is in a few days, so it has been on my mind.
Needless to say, I was devastated. My family is everything to me and losing them in such a sudden and strange way just destroyed me. But I knew Chris needed me and I couldn’t just crumble as a person. Hence my time with a therapist and my journaling efforts.
My folks were not particularly wealthy people. Dad had a decent retirement and their place was all but paid off. The will set up a trust in Chris’ name, leaving him enough money to ensure that he would be able to have the care he needed should something happen to them.
But instantly, I knew.
Chris belonged with me.
So after the funeral, he moved in. And after a decent adjustment period, he finally acclimated to his new life and surroundings. So now it’s just us in my little 2 bedroom apartment.
I think all of that backstory is important. Because, something has happened with Chris that honestly, has me at a complete loss.
I got home from work at about 5:15 p.m. I walked into our living room and instantly knew something was wrong. It was quiet. I heard no TV, no radio, no sirens… nothing. Just the whir of the box fan we keep in the hallway to move air around the place. I have gotten so used to the constant drone of the noise coming from his room that the absence of it was seriously off-putting. Also, it was dark. The only light in the place seemed to be coming from what little filtered in through the living rooms curtains. Chris is great a turning lights on when he walks into the room, but not so good at turning them off. In his mind, he’ll be back in that room later, so why turn it off. It isn’t uncommon for virtually every light in the house to be on when I get home.
But not last night.
I put Chris’ dinner down on the table (Monday is KFC. Remember, all about routine) and called out for him. No answer.
I called out again louder… and nothing.
Chris doesn’t leave the apartment without me. Ever. The world outside our apartment is scary to him. It’s only to be handled in small measured doses with me at his side. I knew he wouldn’t have left. Not willingly anyway.
I walked down the hall toward the bedrooms, continuing to call out for him. At this point, my anxiety level is peaking. Everything just feels so wrong. Too quiet. Too dark. The place doesn’t even smell right, although I couldn’t put my finger on any specific odor that was out of place. It reminded me of ozone maybe? Or burning electronics?
I get to my bedroom. I turn on the light to cut the creep factor and look around quickly. All seems as it should be. I continue down the hall and get to Chris’ room. A closed door greets me. He never closes his door. No real reason he doesn’t, again I think it’s a matter of why close it when I am going to just have to open it up again. So, I knock on the door, call out his name, and listen for anything. Again I hear… nothing. No sound whatsoever.
I didn’t want to barge in, because whatever limitations and disadvantages the universe has dealt my brother, he is still an adult and deserves respect as such.
After the second unanswered knock I decide it’s time to open the door. I turn the knob and slowly push the door open. I’m greeted by silence and darkness. The darkness was… tangible. Had weight to it. I actually backed up a step as it seemed to push out from the room as soon as the door opened. The light from the hallway did little to dispel it. I step forward and reach in for the light switch inside. I flip it… and nothing. The overhead light is either burned out or removed. If my anxiety was elevated before, it now officially went off the charts.
I paused for half a second and realized that the smell, that odd odor, was stronger in here.
Chris has a desk lamp on his table against the far wall. I gather my nerve and step into the dark room. Three steps and I bump into the table and quickly find the switch on the desk light. Thankfully, it clicks on and finally I can see. I turn around and immediately jump as I see Chris. He’s just sitting there, at the end of his bed, staring off into nothing. He doesn’t react to my presence or the fact that I’ve turned on the light. He’s just sitting there, perfectly still. Both feet on the ground, hands folded and in his lap.
I’ve never seen him that still. Ever.
It isn’t uncommon for those on the spectrum to practice self-stimulatory behavior. Moving, rocking, tapping fingers, etc. Chris does all of those things. To see him so still and quiet scared me. I took a deep breath to steady my nerves and called out to him in a quiet and calm voice. He’s extremely sensitive to emotion. Whatever he was going through I didn’t want to exacerbate it by bringing my own significant anxiety into things. I walked slowly into his field of vision and called his name again a little louder. Finally, I see a spark of recognition in his eyes. He moves his head slightly to break the eye contact, but I know he sees me.
I lean against the desk, trying to shake off my fear and quietly say: “Chris, buddy, you scared me bro. What’s happening?”
No response.
Don’t panic. Don’t panic. Don’t panic.
“Hey, bro… is everything ok? Do you need me to help you?”
He slowly moves his head to look me. He points his finger toward the TV and says simply “I hear”.
Hearing him speak comforted me somewhat. Knowing he could communicate was a relief. “Yeah bud? Were you watching TV? It’s really quiet in here…”
Then he says it again, but his voice takes on a pleading desperate tone. “I… HEAR…”
No sooner do the words leave his mouth then he stands, takes a quick step forward, wraps his arms around me and hugs me. Like really hugs me.
Of all the things I had experienced so far this evening, this was by far the most bizarre. Chris doesn’t hug.
The physical contact is uncomfortable to him. The last time I held my brother he was 18 months old. I stand there for a couple beats, not knowing what to do. Finally, I give in to the hug and put my arms around him.
In a voice barely above a whisper, he simply says “I’m sorry”.
I pulled back from the hug and put a little space between us so I could see him. Without looking at me, he again says “I’m sorry”.
I say: “It’s okay bro, I was just worried about you. Why is it so dark in here?”.
Without acknowledging my question, he takes a couple steps back and again sits on the edge of his bed. Back to the both feet on the floor and hands in his lap pose. He again repeats quietly “I’m sorry”.
“It’s okay buddy. Just not used to the dark” I say, trying to sound cheerful. But by the fifth time he repeats “I’m sorry”, my anxiety level is starting to creep up again. So I walk over and kneel in front of him. I gently put one of my hands on his hoping the physical contact will snap him out of whatever loop he’s locked himself into.
He looks down at my hand on his, then looks me straight in the eye and says “I’m sorry that you are going to die”.
It was like a physical blow. I took my hand off of his and rocked back on my heels a bit before standing and stepping back. He looks back down at the his hands, and quietly starts repeating “I’m sorry” every few seconds. I was at a complete loss. I’ve grown up with Chris and his challenges. I’ve learned a lot over the years about his triggers and things that calm him down. But I had nothing.
I think I stammered something along the lines of “why would you say that?”.
He looked up, again made direct eye contact and said “because the voice told me you are going to die soon”. He then promptly went back into the “I’m sorry” loop.
I wanted to vomit. I couldn’t think of anything to do or say as it was, at that moment, well beyond my ability to deal with. So I simply walked out of his room. I sat in the dark of the living room listening to him mutter “I’m sorry” to himself for about 30 minutes before he finally stopped. Then it was just… silence.
I was just so unnerved by it all, I went out to the living room and sat on the couch to mentally digest my evening. I saw my laptop on the desk across the room and, well, here we are. I think I’ll give Doctor Willits a call.
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Friday, September 23
Here we are again. Another day and more weirdness to mentally digest. Last night, I contacted Chris’ doctor. Normally doctors don’t take calls at 9:00 p.m. on a Thursday, but Dr. Willits has been with Chris since birth basically. He knows him better than most and has a lot of experience with autism. He was instrumental in helping me make a success of Chris’ transition to life with me after our parents died. During that time he was kind enough to give me his cell number and sincerely told me to call him if I ever encountered anything with Chris that I didn’t know how to handle. By the time I called Dr. Willits, Chris was starting to return somewhat to normal. Well, his version of it anyway. He’d stopped the “I’m sorry” chant and had resumed some of his self-stimulatory behaviors. I explained most of what happened to the Doc. He recommended I get Chris back into his routine as quickly as possible and wanted me to follow up today with an office visit.
I heated up his dinner and brought it in to him in his room. Without asking I turned on the TV at a low volume and put it on one of the cartoons he likes. He started watching the TV and picking at his food after a few minutes. I was relieved that he was starting to come out of the funk a bit. Within an hour the computer and YouTube were back on, I could hear some faint classical music, and the apartment was starting to “sound” normal.
I debated long and hard on questioning him further on the whole ‘you’re going to die’ thing, specifically the details on the voice he heard, but I didn’t want to erase what progress he’d made in getting back to normal. By midnight, I’d convinced him to get his pajamas on, and to go to sleep. He had said nothing to me all night but the occasional “yes” or “no”, which wasn’t super uncommon. I turned the TV off, turned his white noise maker on low, and left him alone to sleep. I left the desk lamp and hall light on, probably more for my comfort than his. I poked my head in 20 minutes later and he was out cold.
I was spent. Exhausted doesn’t begin to cover it. Life with Chris has its ups and downs but rarely had I been so emotionally affected by anything he’s done. I sat on the couch to decompress. I will readily admit I was still incredibly unnerved by it all. With the anniversary of the accident coming up, the whole mortality thing had been on my mind. Despite my exhaustion, I couldn’t close my eyes without seeing that image of Chris sitting there on his bed. The last time I remember looking at the clock it was 3:50 a.m. and I must have dozed off sitting on the couch shortly thereafter.
I woke with a start about an hour later. The first thing that caught my attention was the place was dark again. And I know for a certain I had left the hall light on. Then, as soon as my brain was awake enough to take everything in, I heard it. It was a loud hissing sound coming from the hallway. I drag myself off the couch and slowly head down the darkened hallway. Again, the place is off. Every room is dark. Lights I know had been on are now off and not responding to the wall switch. At the end of the hallway, I see a soft white glow, and it’s coming from Chris’ room. I will tell you that I had a brief internal debate about whether I was going to walk into his room. But I had to. I love my brother more than anything, he’s all I have left in the world, and it was becoming obvious to me he was having some serious problems.
I walked slowly into the doorway of his bedroom, and instantly I see him in the soft white glow of the television. He’s again at the foot of the bed. Sitting still. But this time, his hands are on the sides of his head, holding his temples. He’s staring intently at the television, eyes locked on the screen, brows furrowed in concentration. That when I finally can pinpoint the noise. The sound I heard from the living room was a combination of his white noise machine being turned up to full volume and the television being on a station with nothing but static.
So he’s just sitting there, in the dark, staring at the static filled screen. I walk past him to turn down the noise machine and even though I pass directly in front of him, he doesn’t acknowledge me. I turn the noise machine off completely and quickly find the remote to kill the static on the TV. When the room is quiet, Chris slowly brings his hands down from his head and they again go into his lap. His eyes don’t leave the now dark television, as if he is watching something I can’t see.
I groggily ask him “Chris, it’s super late buddy. What are you doing?”. His gaze slowly leaves the TV and he again locks eyes with me in what becomes a really uncomfortable stare. After a couple seconds looking me in the eye, he responds with:
“I hear…”.
Then he looks back to the black of the TV screen.
I’m screaming in my head at this point, but trying to maintain my calm. So I step over and kneel in front of him again. I put my hand on his and ask “Hear? What do you ‘hear’ Chris?”.
That’s when he got the strangest look on his face. It’s hard to explain. It’s the kind of look I would give someone after they just asked me a really dumb question. It’s almost like he pities me. He raises one of his hands, gently touches the side of my face, and says: “I heard the voice again”.
My emotional and physical exhaustion wouldn’t allow me to process this weirdness right then and there. I tried maintain the very shallow veneer of calm I had and convinced him he had to go back to sleep because it was still dark outside. After he was in bed, I turned the desk light back on (it still worked) and went back to the living room couch. I sat there for another two hours, sick to my stomach and completely incapable of sleep no matter how exhausted I felt.
Chris woke up with his alarm clock at 7:00 a.m., as normal as he can be. Over breakfast I tried asking him a couple questions about the night before, but he quickly shut me down. He made it very obvious to me that it was not something that he wanted to talk about. Autistics really are masters of the shutdown. Fortunately, Dr. Willits had made us an appointment for the afternoon, and I was really looking forward to seeing him honestly. I wanted a familiar face to talk to about this nonsense. He’s been incredibly helpful to me in the past. I’m hoping he can rule out something like schizophrenia or some other mental illness that would further complicate Chris’ already difficult life.
I called in sick to work so I can hopefully nap a bit before we have to head to the doctor.
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Back from the doctor and I’m more exhausted and freaked out than I have ever been in my life. Napping never happened. Every time I would close my eyes I would startle myself awake for no reason. Last night, and even this morning, I found the more I wrote, the more focused my scattered mind became. So to try to maintain that focus, and logically deal with the weirdness I’m swimming in, I decided to keep going with this.
So we went to Dr. Willits. Wanted to him to see Chris to make sure nothing catastrophic was happening to his mental state. I read a few articles about folks that suffer from both autism and schizophrenia, and honestly, it scared the hell out of me. The last thing Chris needs in his life is an altered reality. Finally getting in to see the Doctor was an incredible relief.
Dr. Willits is an incredibly kind man, and he has done wonders for Chris and I. In the beginning transition time, he made me feel like I was actually doing a good job taking care of my brother, when every part of me felt like a failure. Just seeing him put me at ease. He started interacting with Chris, slowly at first, building up a small rapport before he started any physical contact. Chris knows and is comfortable with Dr. Willits, but the doc is still mindful of what Chris likes and doesn’t like. While he is giving Chris a quick once over, I’m filling in the details of the previous night. He quietly listens to all I have to say, including my statement that I didn’t think I could handle Chris being “schizo”.
Yes. I know. That’s awful but I was so exhausted and emotionally wrecked that it just kind of slipped out.
When I’m done, he chuckles a bit and says “well, I can assure you, Chris isn’t schizo”.
He sat down on the bench next to me and ran through some of the possible triggers that could have caused the episode. Perhaps something Chris had stumbled across on TV or the internet. Something that had language or imagery that legitimately frightened him. He said that it is not uncommon for people in Chris’ situation to react to overwhelming emotions like he did. The shutdown, darkness, sitting still, etc. was basically giving his mind time to process what he had experienced. The ‘you’re going to die’ bit was probably somehow related to whatever he saw.
“So don’t worry, I think you are going to survive the week.”
A wave of relief washed over me. All at once I felt calm and even more exhausted than I already was. Adrenaline had been keeping me going for a while. Now I just wanted to sleep.
Then Dr. Willits brought it all crashing down on me. He said: “Plus, if he only has these types of episodes once a year or so, you are actually doing pretty well compared to others in his situation.”
I froze as a bit of bile started to well up into my throat. “Once a year?” I stammered.
Dr. Willits flipped open my brothers chart and said: “Yes. Looks like your mother brought him in with very similar complaints. Said he was acting and saying odd things and would only watch a channel with static. I would have forgotten it completely if I wasn’t reviewing the file right before you both came in and I noticed the date of the visit. Looks like she brought him in almost a year ago to the day… I guess right before their accident.”
He pauses briefly and closes the file. He looks at me and sees the panic on my face. He smiles warmly and says: “Don’t worry! He’ll be fine. Just get him back into his comfort zone, back into his routine, and he’ll be fine.”
I think my brain, due to a combination of fear and exhaustion, actually short circuited in that moment. Because, honestly, I didn’t say a word. Here he had just dropped on me the fact that my brother was doing something similar a few days before my parents accident, and I’ll I could do was just mumble a thank you and walk out. I walked Chris out of the office, and got into our car to go home. I was on autopilot as my brain worked through the possibilities and ramifications of what the doc had just said. I didn’t even notice it when Chris flipped on the radio and hit the tune button until he found static. When I heard that familiar hiss, I looked over at him and saw him again with his hands to his temples, staring off at nothing.
I was done. I killed the radio looked over at Chris and said “what are you doing?!” probably louder than I should have. He looked at me with the pity eyes again and said simply: “I hear”.
I was done with this cryptic nonsense. I needed more. I couldn’t just drop it. So now was my time to push.
“What do you hear Chris?”
“The voice. I hear the voice.”
“What does it say?”
“That you are going to die”
“Does it say why?”
“No.”
“Have you heard this voice before Chris?”
“Yes.”
“When Chris?! When did you hear it before?!”
“When it told me they would crash.”
As soon as he said the word “crash”, he started a subtle rocking and humming to himself. Remember the shutdown? This was it. Again. He was making it clear I wasn’t getting anything more out of him.
We finished the drive home without another comment from either of us. We walked in and Chris promptly went to his room and closed the door. About three seconds later, I heard the TV click on, followed shortly by the hissing of static.
I just didn’t have the energy to deal with it. I slumped on the couch and grabbed the laptop. It’s helping. I’ll admit that last night, while I was trying in vain to sleep, I did some research. Internet research is bad mojo when you’re exhausted. I fell down a supernatural rabbit hole and what I read and was thinking was crazy. I don’t want to be crazy.
I’m not crazy.
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Sunday, September 25
I’ve been staring at the last thing I wrote for over an hour now. So much has happened since then. But I just can’t type anymore. I can’t get it all out right now. I think I’m hallucinating. I have to sleep.
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Monday, September 26
I slept a few hours. When I woke up I unplugged all the TVs.
Chris was angry. He said it made the voice angry too.
I’m afraid of the voice. I don’t want the voice to be angry.
I plugged his back in. He can hear it again. He said so.
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Tuesday, September 27
Seeing things. Mom and Dad were here. They were crying. I think Chris saw them too. He smiled at them and they stopped crying. I started crying instead.
The static is everywhere. It burrows into my head. Bees under my skin. Couldn’t take it anymore. It gets louder and louder. I feel it in my head now.
I took a pair of wire cutters and chopped the cords on every TV and Radio in the house. Chris was mad. I didn’t care. I don’t want him to hear it any more.
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Wednesday, September 28
I’ve been awake for 40 hours. TVs all smashed. Radio in the pool. The lights in the house don’t work. I don’t know why. I can taste the ozone in the air.
Sitting in my room. Door is locked but I know it won’t matter. I know it’s coming.
There’s static coming from Chris room.
I miss mom and dad.
I hear
I hear the voice.
It says I will see them soon.