I apologize for not writing for a while. I kind of feel like I’ve already told my story here. My intention in starting this blog was to make sense of my life within the context of my newfound realization that I likely have autism. I think I’ve done that now. Unless there are new developments in my life, I don’t feel like I have much to say anymore.
There has actually been a new development since I last wrote. I’m now, for the first time in my life, on anti-anxiety medication. I was taken to the hospital a few weeks ago with what turned out to be an anxiety attack. I’ve always been an anxious person but this was the first time my anxiety caused something that looked like a medical issue serious enough to be of concern to other people. (While I have always been prone to meltdowns when overwhelmed by sensory input and stress, they typically involve crying and therefore appear emotional in nature and not like I’m having a heart attack like this anxiety attack did.)
I’ve now been taking Cipralex for about three weeks. The doctor said to give it a month before deciding if I want to continue taking it. I was very wary at first, and reading online reviews scared me, as they mentioned things like “dulled emotions.” (I don’t mind a bit if my negative emotions are dulled, but I still want to feel the positive ones.) But I haven’t noticed any big differences, either good or bad, other than some headaches when I first started taking it that have since gone away, and I do seem to be sleeping a bit better. But I cried my eyes out over a video about a homeless cat who found a good home the other day, so my emotions are intact, which is good. Unfortunately though, I am still anxious when something stressful happens. I had a very, very stressful encounter with a relative last week and I was a wreck. But then, it hasn’t been a month so maybe the medication just isn’t fully kicking in yet.
In other news, I had mentioned in a previous blog post that I had started going to church again. I have since quit again. People were asking me too many personal questions and I was dreading going every week. I hate being asked personal questions because I don’t have good answers for most of them. I’m not normal, my life isn’t normal, I don’t have the kind of answers people expect, and I feel judged as a result. So I stopped going.
I am still getting together with my local friend about once every two weeks, and I enjoy visiting with her because we understand each other, but other than that I am avoiding being social at all, because it’s just not worth it.
The biggest source of stress right now is my family. Some of my relatives are judgmental and downright mean. I wish I could live somewhere else.
While I am not very imaginative in my waking hours, when I sleep I have extremely vivid dreams. Often they seem so real that I’m certain they’re really happening and then I feel relieved when I wake up from the bad ones, and disappointed when I wake up from the good ones. Some of them have very complex plots and play out like movies inside my head. Recalling them in the light of day can be very amusing.
One recent dream involved a group of people who woke up in a room together with amnesia. Not one of them could remember anything about who they were or what they were doing there. Each one of them left the room on their own and went out in search of clues to their own identity, based on the way they were dressed. For example, one man who was dressed as a fireman went to the local fire station to see if anyone there knew him and could tell him who he was. After my dream followed several members of the group and their unfortunately fruitless search for their own identity, they all came back together and it was revealed that they were all actors in a play and were wearing their costumes. The moral of the story was uttered by one of them: You cannot find your identity in external things.
Unfortunately, most of my dreams are actually bad ones. Nightmares, in fact. I have a few recurring ones. There are a couple that I’ve just started having recently. One involves being lost in a shopping mall. There are endless corridors and passageways that lead nowhere. The mall is closing and I can’t get out. Another one involves finding myself on the wrong bus, knowing there are no more buses that day going back in the direction I came from.
Then there are a couple that I’ve been having for decades. There’s one where I’m in the passenger seat of a car going down a huge hill toward the river in my hometown. The car is picking up speed, and I turn to look at the driver, only to see that there is no driver.
Then there’s my most frequent, longest-running nightmare. In it, I’m in some kind of dangerous or scary situation (the exact circumstances vary) and I’m trying to call someone for help, usually either the police or my mother. But either the telephone doesn’t work, or I can’t make my fingers work to dial it, or I dial it and get a wrong number repeatedly. I am consumed with a feeling of horror and helplessness.
This dream bothered me so much when I was in my twenties that when I came across a TV talk show that had a dream interpreter on it and they were inviting viewers to call in, I did so. The dream interpreter told me that telephones in dreams often represent a connection to God, and she suggested that I was seeking a connection to Him but did not feel that I was finding it. I didn’t want to make her feel bad so I agreed that her interpretation made sense, but I didn’t really feel that it rang true. I do have a strong faith in God and although I sometimes doubt that He loves me as much as He loves most other people, I don’t necessarily feel disconnected from Him. In fact, I’m pretty sure that even if churches didn’t exist and no one had ever told me about God, I would still believe in Him, because I’ve always been able to feel Him. People and religion have never drawn me to Him; more often they do nothing but frustrate me and distract me from Him. It’s in my quiet, alone times that I sense Him.
These days, I am extremely skeptical about dream interpretation. I’m not really buying all that. And I certainly wouldn’t call into any TV shows, about anything! In fact, I got laughed at by certain individuals for it at the time, the insinuation being that only crazy people call in to TV talk shows. That was one of those confusing situations where I got a glimpse of how other people perceive things and I realized I’d gotten something wrong yet again. At the time it hadn’t seemed like a crazy thing to do. They were asking people who had recurring dreams to call in. Why was it weird to then do so? I didn’t get it. Maybe I do now though.
I think at the time, I was just really desperate for the dream to stop, and I thought if my conscious mind knew the meaning behind it, it would go away. But it didn’t go away. Two decades later, I am still having it. I have gone through periods of time where it was less frequent. I think I may have gone a whole year or two without having it at one point. But it is back with a vengeance.
One thing I think is funny about it is that decades ago, it was always either a landline or a payphone I was trying to use, and now it’s always a cell phone. Funny how my subconscious has kept up with the times.
My husband found a local job! We owe a debt of gratitude to my friend’s husband, without whom it would not have happened. There was nothing on my husband’s resume that should have made him look like a good fit for this particular job, but the employer told him, “A recommendation from [friend’s husband’s name] goes a long way!” We’ve often complained that it’s not what you know, it’s who you know, and that is certainly true. This time it actually worked in our favour.
The job is very different from anything my husband has done before. It’s mostly physical and involves a lot of lifting. But he likes it, and is grateful to have something to pay the bills while he figures out his next move. It’s full time, but minimum wage. That’s fine though, since living with my parents we don’t have housing costs except for contributing $100 a month for electricity and gas because apparently we use a lot. And I don’t hate living here as much as I thought I would. It’s going okay (other than some small issues, which I might write about in future posts). It makes a big difference that we can buy our own food and everything. My parents are providing a roof over our heads, but we are not completely dependent on them, which makes it more bearable.
In the meantime, my husband is planning to enroll in an online course (from a reputable university, of course) that will fill in one of his skill gaps. Often employers looking for someone with his particular background also want this one particular skill that he doesn’t have, so he is going to rectify that. With his current job being so physical, he misses the intellectual stimulation of his former work and will be happy to have that with this course in his evenings and days off. I think the course lasts about nine months. So maybe next year he can get his career back on track again. Paying for this course would not be possible if we weren’t living with my parents (it’s going to stretch us financially as it is) so we are definitely staying put for a while.
I stopped going to those awful employment workshops. I had to go to the doctor for a routine appointment and he took my blood pressure while I was there, and it was scarily high, despite the fact that I’ve never had high blood pressure before. Since I was so stressed out when I was at those workshops I did not think continuing to go was in my best interests. I e-mailed my counselor and told her, “For personal/health reasons I need to cancel all my upcoming appointments and workshops.”
I’m supposed to go back to the doctor to get my blood pressure checked again but I’ve been putting it off. I want a chance to try to bring it back down naturally. With moving and all the related upheaval and stress in my life, I was not being as diligent about my healthy eating and exercise habits. I am now back on the wagon, so to speak. I hope it will make a difference.
We have started attending the church I used to go to in this town when I was single. I stopped going there about fifteen years ago after a major humiliation and was determined to never set foot in the building again. Once I realized circumstances were bringing me back to this town, I became certain that God wanted me to go back there and face it. My first Sunday back, it just so happened that two of my closest friends were also attending. One of them still lives here and attends with her husband, but the church has three services and things worked out so that we happened to attend the same one that Sunday. The other friend no longer lives here, but had made the trip to visit her family with her boyfriend that weekend, so she and her boyfriend were there too, along with other members of her family, who, back in the day, were almost like a second family to me for a while. We all sat in the same section. I had been nervous about my first time back, but it turned out that I was almost literally surrounded by people I felt safe with. I was emotionally moved to tears when I realized it.
My husband and I have continued to go, and it’s been good. The church is like a completely different place. The whole atmosphere is completely different, in a good way. The people who were instrumental in my past humiliation are no longer there. In fact, there are very few familiar faces. I encountered one woman I used to know and she didn’t remember me at all. “I have a memory like a sieve,” she said, when I was trying to explain who I was and how we knew each other. I am not offended by that. I am relieved. If people don’t remember me, they won’t be thinking bad things about me based on things that happened in the past.
I don’t intend to get heavily involved there. The last thing I’m looking for is a bunch of activities to get involved with and events to attend. Sunday is enough for me. And if I’m not heavily involved, I won’t be getting overwhelmed, and if I’m not getting overwhelmed, I hopefully won’t make a lot of social mistakes that will lead to people hating me like I did before. I didn’t know my limits then, but I certainly do now.
The book Aspergirls mentions the tendency for females with Asperger’s to lack a strong sense of identity and to be chameleon-like. That was certainly true of me when I younger. For most of my life, people had been telling me I was weird, and I didn’t know why. Unlike me, they always seemed to intuitively know how to act with each other, so I was always observing and quietly trying to learn from them. But trying to implement what I learned required putting on an act. I had learned that being myself was wrong, so to be right, I thought I had to be someone else.
The last time I remember doing this was when I was in my twenties, and it backfired big-time.
I had been railroaded into joining a church College and Career group, even though I was in the latter half of my twenties and everybody else there except the leader was between 18 and 20. I was like a fish out of water, and I hated it there, but I tried really, really hard to fit in because I had eventually (foolishly, I believe in retrospect) come to the conclusion that I was meant to be there for various reasons.
I got to know a young, dating couple quite well during my time there, Melissa and Phil. She was 18, he was 20. Melissa and I were very different in personality and did not become instant friends, but Phil liked me (as a friend) and he and I would often have long, heart-to-heart talks about deep spiritual things.
One day Melissa came to me and asked me to mentor her (which is a fairly common scenario in evangelical church culture). She said that Phil had told her she should try to be more like me. He wanted to marry her but felt she was not mature enough yet, but he really admired my (supposed) maturity and spiritual wisdom and thought if I could mentor her, she could become mature enough for marriage.
I did not feel equipped to mentor anyone, but I did not actually say no because I didn’t know how to do that back then, at least not in a social situation like that. And I suppose there was a small narcissistic part of me that was flattered. So Melissa and I started spending time together. I don’t think any real mentoring actually occurred though. At least not from me to her. I had no clue how to mentor someone and wasn’t convinced it was a good idea at all.
The thing is, I had observed that almost everybody absolutely adored Melissa. Nobody adored me. And Melissa was loved by Phil. Really, really loved. It was beautiful and painful to witness his love for her. I didn’t have romantic feelings for Phil, so I wasn’t jealous in that way, but I did want to be loved by somebody, and I never, ever had been.
I started modelling myself after Melissa, even though she was much younger than me. She was loved and I was not, so it made sense to me that I should become more like her rather than the other way around. That Phil would want the woman he loved to become more like a woman he didn’t love seemed utterly illogical and preposterous to me.
Melissa was very outgoing and outspoken, so I tried to be more outgoing and outspoken. She was very free with her opinions, both positive and negative, so I tried to do the same. She didn’t take things too seriously, so I tried to act less serious. She would playfully tease people, and even though I had never understood teasing and really don’t like it, I tried to learn by watching her how to do it.
The problem is, whenever I’ve tried to be anyone but myself, I’ve gotten it wrong. I’d think I was doing it the same way they were doing it, but I could tell from how people responded to me that I was missing the mark.
During this time, I tried playfully teasing the man I was interested in. I think he and I would have been very compatible if I had been being myself, but instead I was trying to be Melissa. And something I blurted out when trying to be Melissa completely missed the mark, and I believe he held it against me for the rest of the time I knew him. My attempts to backtrack and explain only made things worse, because I was making light of it the way someone like Melissa would have.
I don’t blame him for the way he reacted. I too would be upset if someone spoke to me like that, and yet when Melissa did it, she did it in such a charming way that people responded positively to her. I lacked her charm, I guess, and it was something I couldn’t fake.
This happened circa 1999, and to this day, at least once a week or so something reminds me of that thing I said, and I feel an unbearable sense of shame wash over me. I want to erase it from existence somehow, but I can’t, and that kills me.
That was not the first time I had tried to be someone else, but it was the last. I had finally learned my lesson. Being myself didn’t cut it socially, but trying to be someone else was far, far worse. At least when I’m being myself I appeal to the rare like-minded people I come across, but when I’m being someone else, I drive away the few people who might have otherwise sensed a kinship with me.
I have developed almost a phobia about choosing a seat when I’m out somewhere. It sounds ridiculous, but it’s because I have often gotten it wrong. Not only is finding a spot where I’ll be comfortable a challenge, but it also seems that there is a certain etiquette surrounding where to sit that other people intuitively know and I don’t.
I suppose it started when I was a kid. At Christmas dinner with the extended family (which we didn’t usually attend), I went to sit down at the dining table and my aunt snapped at me that I had to sit at the kids’ table. Until then I had never heard of such a thing as a kids’ table. I suppose if I’d been more savvy I would have noticed where my cousins were going and realized I was in the same category as them, but I have never been very savvy or observant. Oops.
And then there was the school bus. My mom stopped driving me to school after her breakdown, so I had to take the bus. Even though I didn’t live close to the school, my stop was the last one on the route, and by the time it got there, there was at least one kid already sitting in each two-person seat. None of those kids would let me sit down next to them. So I would walk down the aisle trying to find a place to sit, only to be denied again and again, usually along with insults like “freak” and “weirdo.” Then the bus driver would scream at me to sit down, as if I were being deliberately difficult. This is yet another thing that contributed to me quitting school.
Then there was this time after my dad left when he decided to try to be civil for once and took my mom and I out for dinner. We were led to a booth and he sat down first, and then I sat down across from him. I wasn’t thinking about where I was sitting, I was overwhelmed as I usually am in public and just sat down wherever. When my mom and I got home, she screamed at me at length, saying that couples sit across from each other in restaurants so that they can look into each other’s eyes and that I had made it look like my dad and I were a couple. She said she should have been sitting across from him, not me. I was baffled, and I still kind of am. When my husband and I go to a restaurant with another couple, we tend to sit side-by-side with each other, and across from the other couple. I try to be more mindful of this kind of thing now, and not make it look like I want to be a couple with anyone other than my husband, so if I have a choice I try to sit beside my husband and across from the woman instead of the man, but I might still be getting this wrong because I don’t understand these supposed unwritten rules.
My mother also screamed at me once for choosing a seat across from a window, accusing me of wanting to admire my own reflection, and saying that everyone could tell how conceited I was. Again, I was baffled. I’d just sat down in the first available chair without any ulterior motive whatsoever. I didn’t understand why my mom read so much into everything I did, and I still don’t know if other people think like her or not.
Then there are issues at other people’s houses, like in the past when my husband and I have been part of a church home group. Probably because of my poor balance, unless I have a table or something in front of me to rest my arms on, I am extremely uncomfortable in any sitting position other than cross-legged. Like, really, unbearably uncomfortable. Sometimes I have no choice, like in church, but if I’m somewhere where there are different kinds of seats to choose from, like in someone else’s living room, I look for a place where I can sit cross-legged, like a couch or a large easy chair. If those are already occupied, and the only seats left are hard chairs that have been brought in from the dining room, I would much rather sit on the floor. It’s still hard, but at least I can sit in my preferred position. But people make a big deal about it if I sit on the floor. Even if I explain that I’m comfortable there, they don’t seem to believe me.
But then, people have even made comments when I’ve sat in an easy chair, saying almost teasingly, “Oh yeah, of course you’d choose the most comfortable seat in the place!” Okay, why is that something tease-worthy? Is it a faux pas? I guess it’s selfish? Like I should have left the most comfortable seat in the place for someone else? I can understand saving it for an elderly person, but we didn’t have any elderly people in our group. So why was it selfish of me to take that seat, but it wouldn’t have been selfish of someone else to take it if I hadn’t? It’s not like that seat remained empty if I didn’t sit there. I just don’t get it.
And then there’s church. I don’t actually go to church anymore, but I plan to again in the future, and seating is always an issue for me. I am most comfortable sitting at the back, where I feel like I can make a quick escape if I get overstimulated beyond my ability to bear, and also where the speaker or singers can’t see my facial expression, which apparently often looks unpleasant or disapproving. But when attending a new church (I have lived in four cities in ten years, so I’ve done that a lot) I’ve sat through a whole service in the back row before realizing it had a sign at the end of it saying, “Reserved for families with small children.” Oops. I hadn’t even seen that sign when I’d arrived because the sensory overload caused by entering a new building and trying to find a seat makes everything a blur to me. I am not very observant at the best of times, but at those times I am even less so.
Another issue with church is that I feel I have to get there early so I can choose my own seat, because I feel really overwhelmed if the church is almost full and an usher needs to find a seat for me. Inevitably this means having to squeeze by other people who are already seated. I fear stepping on people’s toes (literally) and I’m ashamed that my big butt is practically right in their faces. I end up apologizing profusely, which other people seem to find odd or amusing. Then I can’t even pay attention to the service because things remain a blur for me. It’s best for me to just get there early so I can choose a seat while the place is still mostly empty.
This is yet another reason I am so much more comfortable at home. Much like Sheldon Cooper on The Big Bang Theory, at home I have my own spot, which works for me for several reasons. First of all, it’s a spot I know I can sit comfortably in. Secondly, it takes away having to make any kind of choice or decision about where to sit. Thirdly, I have all my stuff stored in the drawer in the end table beside my spot. My tablet, e-reader, phone charger, nail clippers, prescription medications, notebook and pen, etc. There are times when a visitor sits in my spot, and unlike Sheldon Cooper, I don’t say anything because I know it would be impolite, but on the inside I feel very agitated and uncomfortable.
As I mentioned in my previous post, I have been diagnosed with a number of health issues. One doctor told me I have a “bad batch of genes.” Most of my health issues do run in the family, it’s just that one person will have one thing and another person will have another, while I have everything that runs on both sides.
There’s another health issue that I haven’t spoken to a doctor about yet but that I know I have: Joint hypermobility syndrome. I have read the diagnostic criteria the doctors use, and it all fits. I have apparently had it my whole life. My mom says she first noticed this when I was a baby, when my thumb had gotten caught on something and was bent all the way backwards, but I was not showing any signs of distress. She figured I must be double jointed, and that’s what she always told me, so I never thought it was a problem, and I never attributed any of the problems I did have to my flexibility.
The thing with my thumbs became my party trick when I got older. I can also bend my legs the wrong way at the knees and I used to be able to comfortably get my feet behind my head. Many times people have come to me in shock asking, “What are you doing with your hands? Doesn’t that hurt?” And I’ll look down and realize my fingers are bent in odd ways, which I hadn’t even noticed because it felt normal and comfortable.
Actually, odd hand positions aside, my flexibility was always the one thing about my body I was proud of, but it’s been causing me more and more problems as I get older, and I’ve only recently learned that joint hypermobility syndrome is even a thing. It figures, the one good thing about my body is just part of another syndrome. Learning about it has made a lot of things make sense though.
Sometimes my right ankle painfully pops out of joint, and my knees click and often feel loose and unstable. Three times in the last ten years I’ve fallen down while walking for absolutely no apparent reason whatsoever. My ankles or knees just give out. I think people assume I am intoxicated when this happens.
Washing dishes is getting difficult, as it’s hard to hold a heavy item without pain or without my hand just kind of giving out and dropping it. I am an avid reader, but I can no longer read hardcover books because I can’t support the weight of them with my hands. I have switched almost entirely to e-books because my e-reader is nice and light.
Interestingly, when reading up on joint hypermobility syndrome, I came across something that mentioned a possible correlation between it and autism. Anecdotally, an online friend of mine who has been diagnosed with Asperger’s also has it.
My loose, unstable joints, along with having the poor muscle tone associated with both this syndrome and my then-untreated hypothyroidism, explains why I couldn’t run as fast as other kids even before I gained weight, and also explains my inability to do the flexed arm hang in P.E. when I was a kid. It had never occurred to any of my teachers that I might have a physical problem that, through no fault of my own, was causing my lack of ability. They just assumed I wasn’t trying.
I now walk on a treadmill for exercise, but I have anxiety that the noise of it bothers the neighbours in our apartment building. I also used to work out with weights, but I don’t have the floor space for it here, and it’s become more difficult because of the issues with my hands.
Despite the fact that I have issues that cause me pain (joint pain, severe menstrual pain, recurring kidney stones, etc.) which is sometimes bad enough that I wish I had something stronger than what I can buy over the counter, I absolutely will not ask a doctor to prescribe pain killers. I am so often misunderstood and I am certain I would be mistaken for a drug-seeker. I buy Tylenol 1 when things get really bad, and that is difficult enough for me, as you have to ask a pharmacist for it and they ask what you use it for and make sure you’re not buying it too often. You’re allowed to buy one bottle a month here, and I buy it about once every six months, but I still feel horribly guilty when they quiz me.
In spite of how it might sound here, I try not to indulge in any self-pity, and I don’t talk about my physical problems much, at least not with anyone other than my husband or parents. I don’t want to get labelled a hypochondriac, and the last thing I want is any extra attention. And since most of my socialization and work experience in my adult life has been in churches, I don’t want to incur the judgment that some church goers (I’m specifying church goers here, not Christians, because church culture is something entirely different from Christianity and I believe that those who truly understand the nature and teachings of Christ are not this hard on people) feel towards people who have chronic health problems: That we lack faith, that we just want attention, that we are too negative, that we are complainers.
And then there’s the issue of unsolicited advice I mentioned in my previous post. Inevitably, if word gets out that I have various health issues, or when people have made their own observations like when they see me frequently ill at work, they start telling me what I must be doing wrong (because if someone’s ill it must be their own fault, right?) and what I should be doing or eating or taking. I’ve had people try to sell me all kinds of snake oil from their pyramid schemes and offer to balance my chakras and whatnot. (For what it’s worth, I did let the woman “balance my chakras,” and it made me feel exactly 0% better.)
Even saying something as simple as, “I don’t feel well today,” to the person who shall remain nameless led to this person snapping back at me, “Don’t say that! Words have power! You’ll bring it on yourself!” I don’t agree with that type of theology or whatever it is, but arguing with people just stresses me out and makes me sicker.
So, it’s just not worth it to talk about it, even if part of me thinks it might help people to understand why I live the way I do. Many people do not respond with understanding, so what’s the point?
If someone invites me somewhere and I’m having a bad day, pain- or fatigue- wise, depending on who it is, I’d probably rather say, “I’m sorry, I don’t want to,” than, “I’m sorry, I’m in pain today.” They might think I’m being difficult, but at least they won’t think I’m a complainer who lacks faith and wallows in negativity.
When I was a kid, the Golden Rule was drilled into my head: Do to others what you would have them do to you. Because I tended to take things literally, I tried to follow this by treating people the way I wanted to be treated. This backfired. It turns out, the way I want to be treated isn’t the way most other people want to be treated. I would be more successful by following the spirit of the rule rather than the letter of it, so to speak. In other words, treat other people the way they want to be treated, not the way I want to be treated. Of course, this adds a layer of complexity, as I first have to figure out how other people want to be treated. I imagine it’s so much easier if you already think like most other people do.
I could provide dozens of examples, but for now I’ll offer just one:
My husband and I have moved many times. Being Christians, by which I mean we believe in Jesus Christ, in each city we’ve moved to, we’ve chosen a new church to attend. This is always a very overwhelming experience for me. Everything about modern evangelical church services is designed to entertain and to stimulate the senses. And before the service even starts, there’s having to walk through a crowded foyer and trying to find a seat in an unfamiliar environment. (Also, I’m aware that you can be judged for where you sit — I’ve heard pastors say from the pulpit that the people sitting in the back aren’t serious about their faith or about being at church.) With my sensory issues, I get so overstimulated, everything becomes a blur. The very last thing in the world I want at that point is someone coming up to me and talking to me and asking me questions about myself.
Because of this, if I see a person I don’t recognize at church, I do not go up to them. I respect them by giving them the space and time to get their bearings. That is how I want people to treat me, so that is how I treat them. That, to me, is kindness.
Imagine my surprise to learn that most people come to church wanting to be welcomed and looking for a sense of community, and they will never return if no one talks to them the first time! They will go away hurt and they will tell people what an unfriendly church it is!
The key would be to have the ability to read people, I suppose. To be able to look at someone and tell if they want to be approached or left alone. But reading people is notoriously tough for Aspies. Despite the stereotype, I am actually capable of reading people quite well, but only in a calm environment with little other sensory input. When I’m already overstimulated, like at church (yes, even after I’ve been going there for a while), my head’s in a whirl and detecting such subtleties is just not likely to happen.
This is a follow up to my post My Worst Sensitivities. Here are some more of my sensory issues. I consider these ones to have less of an impact on my life than the ones in my previous post.
Aversion to water. I hate the feeling of water on my skin, and especially in my eyes. I have never learned to swim for this reason. One of the very small number of spankings I ever received in my life was because I was refusing a bath. When my husband and I shower together, he says I have a look on my face like I’m in pain the entire time. Despite how much I hate it, I do shower every day, because I hate feeling dirty and smelling bad more than I hate the feel of water. But sometimes when I can get away with it, like when I’m not working, I put off my shower until later in the day because I’m not a morning person and that horrible feeling in the morning is too much for me.
I don’t like bright colours. I dislike animated TV shows and movies for this reason. I never really liked most children’s shows or cartoons when I was a child because of the bright colours. I especially hate bright red and orange. But the colours I do like, I love. My favourite is a soft greeny-blue.
I have sensitivities to loud noises and auditory processing issues.
When the fire alarm in the building I live in goes off, I shake uncontrollably, even if I know it’s a false alarm. It’s the noise itself that rattles me.
I can enjoy loud music if it’s music I like and have chosen to listen to, but it drives me nuts if it’s someone else’s. Conflicting noises also drive me nuts. My dad has the tendency to put the TV on, get bored and leave the room without turning the TV off, go into the next room, and put the radio on in there. When I can hear a TV and a radio at the same time, it makes me feel like I’m losing my mind or like my head’s going to explode. It is very, very unpleasant.
I also have trouble in crowded, noisy environments picking out the one voice that’s talking to me. This has always made church attendance difficult for me, as standing around in a crowded church lobby and chatting with people is the expected thing. Trying to skip this is frowned upon, as churches are big on “community” these days and I would even go so far as to say many of them worship community more than they worship God. Going home to read the Bible and pray? Bad. Standing around making small talk about the weather? Good. (I realize if you don’t believe in God, this may not seem like such a bad thing, but for me, believing in God is the one and only reason I’ve ever gone to church. I’m not there for anything else.) In these situations, I stand there and smile and nod and hope they’re not asking me any questions. I have sometimes told people I have auditory processing issues and I can’t understand what they’re saying to me. Sometimes we then stand there in awkward silence before they excuse themselves to talk to someone else, but more often they just keep chattering away and I keep nodding. I don’t know why I keep doing that after I’ve already admitted I can’t understand them. I think it’s just because I hate making people feel bad or uncomfortable.
There are some sounds I like that you wouldn’t expect me to. I love the sound of traffic on a highway. I find it quite soothing, even when I’m trying to fall asleep. I live near an airport and I don’t mind the sound of planes overhead. I also love the sound of rain and howling wind.
Other issues I don’t know how to categorize include:
Sensitivity to hot and cold. This could be related to my hypothyroidism or other health issues. It’s getting worse as I get older.
Motion sickness, when I sit in the backseat of a car. This makes me not want to go anywhere with others unless I can sit in the front, but obviously insisting on sitting in the front seat on outings with people can come across as pretty obnoxious. It’s easier to just stay home.
Oddly enough, I love roller coasters and never get sick on them (although it’s been a while since I’d ridden one because I don’t know anyone else who can tolerate them). I think it’s because a roller coaster ride doesn’t last long enough for the motion sickness to kick in. I’m usually in a car for at least 10 minutes before I start feeling sick.
I might have more issues I’m just not thinking of at the moment, but the ones in this post and my previous post are the ones that immediately come to mind.
I have huge sensory issues. These are the worst ones:
The biggest one is odor sensitivity. This isn’t always negative. I can smell when someone bites into an apple in another room. I can usually tell when something is done baking from the way it smells. I can detect the slightest odor when no one else can, leading people to think I’m imagining things, but the source of the odor is almost always eventually located and I am proven right. My husband jokes that I should get a job as a sniffer dog at the airport.
Unfortunately, as I’m sure you can imagine, this leads to problems as well. I have been known to vomit if I smell excrement, sweat, or food that’s gone even slightly off. I am intensely uncomfortable if I smell cigarette or marijuana smoke. And I am nauseated by the smell of some cooking, especially curry, but also ground beef. Funnily enough, my mom says she was nauseated by the smell of ground beef cooking when she was pregnant with me.
My odor sensitivity is one reason I’m actually glad I’ve never been able to have children. I cannot change diapers or even be near a baby with a full diaper. People say, “It’s different when it’s your own,” but I don’t believe it would be for me, because (and I apologize if this is a rather crude thing to say) sometimes it’s not even different when it actually is my own, if you get my drift. You can imagine how difficult this can make everyday life for me.
I know at least one woman who loathes me and unfriended me on Facebook because I ran outside and threw up when I could smell dirty diapers in the church nursery. She’s one of those people whose life revolves around babies and children, so to encounter someone who is sickened by the smell of their natural functions is a great offense to her. In a way, I can understand. But I can’t help it.
Another problem my odor sensitivity has caused is with my in-laws. I am married to a Brit, and his friends and family always want to go out for “a lovely curry.” Unlike for most Caucasians here in Canada, it seems to be their go-to dining out or take-out choice. But I can’t do it. They say, “You can eat western food while the rest of us have curry,” but I can’t even be present where it’s being cooked or eaten. I will vomit. I have heard my mother-in-law on the phone with her friends talking to them about how weird it is that I don’t like curry, and how it negatively affects their plans.
I have food taste and texture sensitivities, as well as gastrointestinal issues. For texture, the worst is any kind of fat or gristle in meat, and I am grossed out by anything with bones. (I’m this close to becoming a vegetarian, but that’s a topic for another post.) When I go out, I stick to boneless skinless chicken breasts, shrimp, or white fish. I don’t like fish such as salmon, as it’s too strongly flavoured. At home I will eat roast beef, only if it’s boneless and I’ve cooked it in the slow cooker until it’s very well done and removed all obvious fat.
I don’t like most strongly-flavoured cheeses, and I don’t like spicy food unless it’s Mexican and as long as it’s not overloaded with cumin. In fact, Mexican is one of my favourite cuisines, taste-wise, even though it sometimes gives me a stomach ache. Speaking of stomach aches, I get horrible ones from bananas. I get mild ones from cucumbers and avocados. I like leafy greens, especially spinach, but it goes right through me. I also abhor the taste of coffee and won’t even eat mocha-flavoured desserts.
It is very difficult for me to eat at other people’s homes and I have had very bad experiences as a result. To compound this issue, I am prone to hypoglycemia, so I do need to eat regularly. If I find myself somewhere that has nothing I can tolerate, I can end up in a bad state. I have to try to remember to carry a fast sugar plus a protein bar at all times.
I am sensitive to the feel of some fabrics and fits of clothing. I have hated corduroy my entire life. Touching it creeps me out as badly as nails on a blackboard. I also don’t like velvet or suede. There are others I have an aversion to that I don’t know the name of.
My sensitivity in this area has increased as I’ve gotten older. I used to be able to wear uncomfortable things for the sake of so-called beauty (like pantyhose back when they were still in fashion, or high-heeled shoes), but I can’t do it, or perhaps I’m not willing to do it, anymore.
Now I will only wear soft fabrics, preferably with some stretch in them, and nothing too form-fitting in my abdomen or arms unless it’s very soft and stretchy. In recent years I have shopped almost exclusively at Old Navy because I can always find affordable, comfortable clothing that fits me the way I want it to. I’m sorry if that sounds like a commercial. They’re not paying me to say that. They can if they want to.
I also don’t like physical touch. I remember my parents arguing about this when I was a child. My mom thought I should hug the relatives, and if I didn’t like it, I should get over it, because it’s the kind and loving thing to do. My dad thought I shouldn’t be forced to hug anybody. He doesn’t like hugging either, so that is one thing he’s always understood about me.
My aversion to touch got worse when I was about 7. I remember being cuddled up to my mom and smelling a certain odor coming from her body, and it just grossed me out to the point where I couldn’t touch her after that. I never explained that to her, and I don’t think I should have, but I think she’s since felt hurt by my rejection of her physical touch. Also, around the same age, I somehow came up with the weird idea that if people touched me, they would be able to read my mind, and I didn’t want that. It’s not that my thoughts were bad, it’s just that they were mine.
I no longer believe people can read my mind. Maybe my life would be easier if they could, as my motives would no longer be misunderstood like they often are.
There are exceptions to my aversion to touch. I like touching and being touched by my husband (although there are things I can’t tolerate even with him, like being tickled), and I can hug my closest friends. And I love cuddling with cats, although I can’t always stay in one position for a long time like they want me to.
I have become pretty good at putting on an act, like when I used to attend church, where people hug all the time. I act like it’s okay and like I even enjoy it, but my skin is crawling with revulsion the entire time. And there was this one woman I couldn’t handle hugging because she had really bad body odor, so not only was I repulsed by the touch itself, but I nearly vomited every time she came near me. Then I was terrified of hurting her feelings if she realized I was vomiting because I thought she smelled bad. But then I actually did hurt her feelings because I started avoiding her. She became very aggressive, actually chasing me down and saying, “I’m not going to let you get away without giving me my hug!” (For what it’s worth, I heard her saying that to other people too, so I wasn’t her only target.) It was so horrible, I actually finally had to confess to her that I was uncomfortable with hugs. To my utter horror, she started to cry and she told me about how when she was a child, she desperately wanted someone to hug her and no one did, and that’s the reason it was so important to her to have hugs as an adult.
Immediately after the encounter, I went out to my car and had one of my meltdowns, crying and shaking and gasping for air. I was certain that I was a horrible person who had disappointed God with my lack of love and my callous treatment of one of His people. I felt that I’d be better off staying away from people entirely, instead of being around them and hurting their feelings so badly.
More of my sensitivities are mentioned in my next post.
I had stopped going to church in my teens, and decided to start again when I was 26. By then I lived in a different town and didn’t know anyone at the church I’d chosen to attend, but I had become very interested in learning more about God and my reading on the subject had ceased to be enough to satisfy me. When I was younger, church youth groups had always been overstimulating for me with all their noise and games, but I thought now that I was an adult, I could join an adult small group that would be more my speed. I spoke to the pastor and he recommended a specific group based on my location and interests.
As soon as I showed up at the group meeting, my age was an issue. There was no one there under about 45, which didn’t bother me at all, but they seemed discombobulated by my presence. First of all, they didn’t believe I was 26 and estimated me to be about 16. (So when I was 10 I was perceived to be 16, and when I was 26 I was still — or again — perceived to be 16!)
Once I cleared up their misunderstanding and assured them I was an adult, they allowed me to stay and I continued to attend their weekly meetings, but I never felt truly welcome. They often made comments to me about how I must have thought the group wasn’t the right fit for me, how they thought they were too old for me, or how they were certain I would be better off joining a group with “other kids.” Their words made me feel uneasy, but I don’t think I truly understood what they were getting at.
Then one Sunday, an unfamiliar woman at church approached me in a very friendly manner. She said she was trying to get her 18-year-old daughter to join the church’s College and Career group and she wanted me to befriend her daughter, encourage her to join the C&C group, and attend it with her. At the time, I didn’t know what was going on, but in retrospect I realize the woman must have been sicced on me by the members of my group. It was framed as if I’d be doing a good deed for this 18-year-old, helping her feel welcome and get more involved, but I’m now convinced that the real motive was to get me away from the “grown ups.” They’d been saying they were too old for me, but I’m now certain they thought I was too young for them. Their scheme worked and I quit my adult group and joined the C&C group, feeling that I had no choice. (For what it’s worth, that 18-year-old has ended up being one of my best friends in the world to this day, despite our age difference, so at least something good did come out of it.)
I didn’t enjoy the C&C group. It was officially designated for young adults aged 18 to 28 but I was the only participant older than 20, except for the leader who was my age. Like all church C&C groups, it was intended to serve as a transitional group for those who were too old for youth group but not interested in or ready to join an adult group. It’s great that these groups exist for those who want them but it did not feel like the right fit for me and I felt like a fish out of water. I was dressed more like their parents than like them, and almost no one there was actually interested in studying or learning like I was. It was all about having fun and hanging out. We even had to perform Sunday School-style “action songs,” like the one below:
Sometimes the leader even got us to perform them in public places other than church, and unlike in the above video, there were not even any children present. Apparently we were the children! I’d never enjoyed things like that when I was a child, so imagine my horror at being coerced into it when I was between the ages of 26 and 28. The whole thing turned into a freakin’ nightmare in more ways than one, but that’s perhaps a topic for another post.
As I continued to go to church, my age was always an issue. I was always too young. When I was 28, a woman in the church talked me into signing up for a certain international ministry’s “leadership training course,” giving me a spiel about how I had the characteristics of a potential group leader. With my passion for learning and studying, I naively thought maybe this was my calling (not realizing at the time that you also have to be good with people to be a leader). I spent money I couldn’t afford to take that course and while there, they did nothing but try to sell books and other materials to me and the other participants. I soon realized it was pretty much just a money-making scheme for them. Nonetheless, when I completed it I approached the woman who’d recruited me and asked for her advice on how to go about setting up my own group. She looked at me like I was crazy and said, “You can’t lead a group! You’re too young!” Then she conceded, “Maybe you could volunteer with the youth group and work with teens.” Meanwhile, there were female adult group leaders in the church who weren’t much older than I was. But they were already married with kids and were perceived and treated differently than I was.
Speaking of marriage, I was 31 when I got married and planning my wedding was awkward, as everyone who met me during the process thought I was too young to get married. A saleswoman at one formal shop assumed I was shopping for my prom. One woman I spoke to said, “You can’t be getting married. You look 12 years old!” 12?! My perceived age was actually dropping!
(Fortunately, my husband looks young too, otherwise I guess people would think he’s a pervert.)
During our marriage, we have moved a lot for the sake of my husband’s career, so we’ve experienced being the new couple at church many times. In our thirties we had to turn down many invitations to College and Career groups.
Even now in my forties, it’s awkward to meet new people because they make false assumptions right off. I continue to find that church women my own age talk down to me or want to mentor me, assuming I’m a new, young wife, while women in their early twenties approach me saying how good it is to see another married woman their own age at church. People also talk to me as if I “haven’t had kids yet,” even though at my age, if it hasn’t happened yet, it probably won’t.
A couple years ago, at the most recent church my husband and I attended, a middle-aged couple invited us out for lunch one day and told us that while we’re living in this city they’d like to be our substitute parents. I just smiled and said thank you, not wanting to make a big deal out of the age thing. Later the woman asked how long we’d been married and I said 9 years. She reacted with shock, apparently doing mental calculations, and said we must have gotten married very young. I told her our ages and she slammed herself back in her seat, bugged out her eyes, and said, “That’s insane!” She couldn’t believe it. After that, she was mean and snarky to me, making snide comments about how I was probably after her husband. Like, what?! If I was in my twenties, or whatever age she thought I was, she wanted to be my mother, but if I’m 40, I’m a possible threat to her marriage?! I am still baffled. I don’t get it.
My hair hasn’t yet started to go grey and the only wrinkles that have appeared are small ones below my eyes which no one else seems able to see except me. I still get carded at the liquor store and it’s even been insinuated that I’m using a fake ID, since I supposedly cannot possibly be the age that is indicated on it. One time, a man demonstrating kitchen knives in a department store refused to give me a promised sample knife because he wasn’t allowed to give them to minors. Even friends seem baffled by my appearance sometimes. Recently when meeting up with an old friend after years apart, she exclaimed, “Oh my goodness, I’d forgotten how freakishly childlike your hands and feet are!”
Meanwhile, the way I feel inside has changed a lot, but perhaps not in the way you’d expect. When I was in my twenties, I felt older than my age. Other twenty-somethings always seemed so energetic in a way that I wasn’t, they weren’t as serious as I was, and unlike them I was useless at keeping up with things like trends or fashion. Now that I’m in my forties, I’ve done a 180. Thanks to the internet, I’ve gotten much better at keeping up with what’s popular. I am not very observant when I’m out there in the world because I’m usually so overwhelmed but when I’m online I enjoy finding info on what’s currently in fashion and figuring out how to implement it for myself. My musical tastes have changed as well. People seem to expect me to like the classic rock I listened to when I was young but for the most part, I can’t stand it. I love new music, especially indie and electronica, and am always seeking out new bands to listen to. I’ve also gotten less serious as I’ve aged and in some ways have loosened up quite a bit.
Most new people I meet now who are my age are parents, are completely (understandably) wrapped up in parenting, and post memes on Facebook about how you don’t truly grow up or become an adult until you have children.
So I feel like I was never really a child, and now somehow I’m not really an adult either. It’s like I’m not any age, as if somehow I’m exempt or excluded from progressing through life in a normal way or in a lineal fashion.
The only people I still feel I can relate to are my long-time friends (most of whom, funnily enough, either aren’t married or aren’t parents, or both), but I don’t live near any of them anymore. I have zero social life in my current city and have even stopped going to church (which has been a wonderful relief and has eliminated a lot of stress from my life, but is no reflection on my faith or how I feel about God). When I go out shopping or wherever, I feel like I’m a GenX’er in disguise as a Millennial, not deliberately, but rather by some freak cosmic mistake.
I’m not saying this to brag. (Perhaps I should add that I am not beautiful or hot. I never, ever get hit on. I don’t look good, I just look young in some kind of freakish, woman-child kind of way.) I know I’m supposed to feel flattered when people don’t believe I’m 42 but I don’t. I feel misunderstood and as if people think I’m being deliberately deceptive. But like I told that 20-year-old when I was 15, I’m not trying to do anything. I just am what I am but it’s never been quite right or appropriate for my age, apparently.
I never understood why this is the case until I read Aspergirls, which mentioned that it’s quite typical for females with Asperger’s syndrome to act and appear younger than their age. So if I really do have Asperger’s/autism, I’m “normal” for a female with autism, I guess. I suppose it’s nice to feel typical for once, even if it is only typical within a very specific subset of people.