The smell of marijuana woke me up at 5:30 in the morning. Second-hand marijuana smoke gives me headaches, dizziness, and nausea. It usually lasts 24 hours. Sometimes, days. During this time, I can’t write, read, enjoy TV, or even hold a conversation that goes beyond talk of my own suffering. It’s a lot like your worst day of the flu, and it occurs every time someone in my vicinity smokes marijuana. If I had a job, I’d have lost it by now. The smell is faint, but as soon as I’ve identified the smell, I already know it’s too late.

I can’t go into many public spaces (the beach on weekends, the entire city of LA, ever) because the risk is too great. Even when I don’t run into it, I spend the entire time terrified I will, which leads a person to ask herself, “what’s the point?” a lot. Even a place that I once knew as safe becomes off-limits after I’ve smelled it there once. I’m too scared to go back.

It’s not just the physical illness that scares me. Every time it happens, I’m thrown into the kind of despair and suicidal ideation that usually only comes with a deep depression. I don’t know if that’s a side effect of the drug or just knowing that I’m completely helpless against this thing.

We’ve been living in Southern California for two and a half years and have lived in four places. The first one was temporary, but it was too loud (traffic noise), and I was getting sick from marijuana smoke. I didn’t know it at the time. We were close to an airport, and I thought I was being poisoned by jet fuel. In the second place, the smell of marijuana was so thick and so frequent that there was no way I’d miss the connection. In the third place (where we stayed the longest), the neighbors were noisy. My nervous system never fully regulated the entire time we were there, but I figured it was better than marijuana. Earplugs and noise-cancelling headphones exist, but I had to wear them almost nonstop, and they didn’t always work. The noise was getting worse and our rent was going up, so we moved again—right next door to another marijuana smoker.

So far, the smokers, noisemakers, and landlords have largely been disinterested in my experience. I don’t know how to express how much grief and anger this has caused me, but I often get a pressure in my chest that feels like someone jamming the tip of a baseball bat into my solar plexus.

The usual suggestion is “Just don’t be here.” Even the doctor I begged for any kind of insight into why I’m getting so incredibly ill from small amounts of second-hand smoke shrugged and said, “Get a new apartment.” I’ve been moving so often and for so long that I feel like I’m constantly on the run. I’ve changed rooms, houses, states, and countries. I’ve stood in corners and walked off into distances. I’ve gone home early or didn’t go out in the first place. I’m just looking for a place to be. I’m beginning to feel like there is no ‘here’ for me.

The social model of disability says that disabled people are not disabled by our differences, but by how society rigidly caters to a specific level of ability. A blind person is disabled by his vision only because we’ve built the world for the sighted. It’s not just about having fewer or impaired abilities, either. I have more. I hear more, see more, smell more, feel more, but since no one else senses these things, I may as well be dealing with poltergeists.

When we know an injustice can be righted, it actually gives us far more agita than just accepting things the way they are, but the agitated path is often the only path to fixing things. Plus, it’s hard to unknow there’s a better option once you’ve learned about it.

Life was never like this in Japan. There, I’d gotten used to the idea that environmental stressors would be recognized and quieted before I arrived. Here, I still can’t wrap my head around the fact that, at least in California, a person’s right to drug me against my will eclipses my right to exist in peace.

So, we moved again. This time, from South Orange County to just outside of Loma Linda—the only blue zone in the United States (a “blue zone” is a geographical area where people routinely and healthily live into their 100s).

Since it’s in a blue zone, we assumed that people would be more health-conscious, and hoped, maybe naively or irrationally, there’d be fewer smokers. Then, when the guy next door lit up, the nightmare of our months in Los Angeles came back.

It wouldn’t have been so bad in LA if the property managers hadn’t kept insisting over and over that we not confront the neighbor ourselves, saying they would talk to the neighbor. They promised to enforce the lease, which stated in bright red capital letters that it was a non-smoking property.

Because the smoke was coming in nearly every day, we made follow-up calls nearly every day, but it took them months to even make contact. I can’t hear the words “the week just got away from me” without having PTSD flashbacks. The excuses got more and more ridiculous over time, until they started sounding like a junior high school girl at a dance refusing to approach a crush.

“What if he has a medical marijuana card?” they implored us.

“The only way to find out is to ask,” we said.

“But what if he’s insulted by the question?” they fretted.

I can’t remember the details because I spent most of that time alternating between my bed and sobbing in the corner of my bedroom. Five months later, they admitted they had no intention of doing anything about the smoke but did say they’d let us out of our lease. As soon as we met the same problem here, we immediately thought we’d have to move, despite having repeatedly asked about noise and smoke and emphasizing my extreme sensitivity before signing the lease.

In the meantime, in Loma Linda, the daily high went up to 100°F, and the central air conditioner was already making me sick. They sent out a repairman. When he cracked it open, it looked as if the filter inside hadn’t been changed ever. Cleaning would be expensive. In the past, an additional air scrubber had made a big difference for me, but we were feeling pretty pessimistic about the landlord shelling out for anything. We came to the conclusion that living in California was a failed experiment, and we needed to get the hell out of Dodge.

Before moving, we thought we’d at least try speaking directly to the neighbor. Since I can barely deal with people in the best of times and was sick on top of it, my husband spoke to them. The neighbor, refusing any form of compromise, argued over and over that smoking marijuana is legal. This well overused refrain is beginning to sound to me like a driver standing next to his wrecked car after having run a red light proclaiming, “But driving is legal!”

The neighbor refused to engage in the whole “This is a non-smoking building” thing. He just talked past it, as if the point were irrelevant, which isn’t surprising. People don’t bother to find out what is actually legal and what isn’t. The rules vary between towns, municipalities, and buildings, and even the most permissive of places have regulations on where and when it’s okay to smoke. It’s not really anyone’s fault. There’s been no public education and no enforcement, and everyone keeps repeating the words, “Well, it’s legal!” with a shrug, perpetuating the mythology that it’s always legal anytime, anywhere, and under any circumstances.

Within a week and a half, the landlord sent the smoking neighbor an eviction warning, which is a letter that says, “You’re in violation of the lease. Stop doing what you’re doing or move out.” To us, this is a mythical letter. We had dreamt about this letter. It’s a piece of paper that we knew, theoretically, existed, but had been wholly unattainable in our LA apartment. Through our previous landlord, we’d vicariously begged their lawyers to send this exact letter. It would not be sent. It would never be sent. It got to the point where we wondered whether our previous neighbor had mafia connections, but based on all our observations, he was just a silly, oblivious college kid.

Another HVAC guy showed up a few days after the neighbors got their letter. He cleaned the HVAC unit and installed an air scrubber. The property manager called to apologize for what had happened. She expressed concern for my health and thanked me for my patience. She then asked if we were willing to testify against the neighbors in their eviction case. This brought me up short.

Eviction seemed too far, too fast, but I agreed anyway. This most definitely happened because my brain processing is slow (or, as many autistics say, it’s complex, and complexity takes time), and during the lag, I often get pushed along by a tide of social expectation.

Of course, a person can always change her mind about something as weighty as testifying against her neighbors, but the entire discussion got cut short when our HVAC motor died exactly one day after it was cleaned. The HVAC guy warned us this could happen. Apparently, if an HVAC motor has been fighting grime and dust resistance for years and then suddenly has none, it can break.

When the property manager said, “The landlord wants you to know that they are behind on you on this, and they will do whatever it takes to stop the smoke from coming into your unit,” I almost started sobbing on the phone. I knew exactly how that broken HVAC motor felt.

I’m sure our neighbors never expected to leave their home under these circumstances. I can only imagine the amount of anxiety and confusion they must be feeling right now, but I also don’t have any control over how my landlord chooses to solve the problem. Neither the neighbors nor the landlord were interested in any sort of compromise. They both wanted things 100% their own way, and you know how that’s going to shake out in the end. I could not back down because I just don’t have it in me to absorb the cost of someone else’s poor choices anymore.

I think my willingness to testify against the neighbors would be perfectly valid if it were merely about my own well-being, but I see it as more than that: autistic women are almost never given the chance to advocate for our own sensory needs. I know how rare these opportunities are, so when they come, they must be taken, even if it only moves the needle a tiny bit (or not at all) for all of us.

A Swedish study of 27,000 autistic adults found that autistic women are more than 13 times more likely to die by suicide than neurotypical women and twice as likely to die by suicide than autistic men.[1]

I’m pretty sure I know why. We often feel backed into a corner by a world determined to convince us that it’s wrong for us to advocate for ourselves. Our needs are routinely dismissed as drama or a bad attitude. Intense levels of flexibility are demanded of us over and over again until we eventually break, and the conclusion we reach is a logical one: If no one is willing to make room for us, then there is no room for us.

In the end, I didn’t have to testify. The neighbors never responded to the eviction notice, so the landlords were granted a default judgment. I’ve seen no signs of them moving yet, and marijuana smoke still occasionally drifts in. I hope, for my sake and theirs, that they don’t wait to be locked out before taking it seriously.

We’re still trying to figure out what’s going on with my extreme sensitivity. I’ve also always been very sensitive to tobacco smoke, but not on this level. The tobacco smoke in Japan didn’t make me sick, and I suspect it has something to do with what is allowed to be in tobacco products in Japan. Am I only allergic to particular strains popular in California? Do I have a treatable condition? The answers might be that it’s all strains and there’s no treatment. So, even though my need to move houses isn’t quite as urgent as before, I will eventually need to leave California. The trick is figuring out where I can go.

If you believe this is an issue that deserves attention, please share this post, mention it to someone, or find a way to appropriately bring it up when it seems relevant. Smoking is not just about the smoker, but it’s also about every person within range of the smoke.

[1] Tatja Hirvikoski et al., “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry, 2016, https://doi.org/10.1192/bjp.bp.114.16019

I was on, my friend, Wake’s podcast, Curious & Kind Conversations. Wake is doing a series of 42 episodes (their favorite number) before the opening of their shop, Curious and Kind. You can find Wake’s Substack here.

I was on episode 19, and if you want to hear a couple of autistic people talking about stuff, you’re un luck! Here’s a link to my episode.

It’s embedded here: