If it is so difficult to begin, imagine what it will be to end— Louise Glück
I am reading Geoff Dyer’s book of endings; The Last Days of Roger Federer. I have tried and failed before to read another book by Dyer that came highly recommended: Out of Sheer Rage. Perhaps, after listening to (because that’s how I read almost all books these days) The Last Days of Roger Federer, I will be able to return to it. I was attracted to this current book by its title and my adoration for Roger (as Dyer notes, it’s always just Roger despite not knowing him, only Roger), and also due to the fact that I’d failed to read his previous book. Although, it’s not his only previous book. Only the one I’d previously attempted to read. This new book starts in a fashion I particularly enjoy; short “chapters”. Though most people would probably refer to them only as paragraphs. Other authors whose work I appreciate for the same reason; Yiyun Li in Dear Friend, from My Life I Write to You in Your Life, and Lewis Hyde in A Primer for Forgetting. These short chapters are put together to form a whole picture based on seemingly small, dissimilar or unrelated snippets. They are the style of book I someday hope to write.
Dyer moves from an opening chapter on The Doors, to a second chapter about Bob Dylan and references his song Tangled Up in Blue.
I had forgotten this song. And, when duly reminded, had only the briefest inkling that it was originally written by Dylan (Dylan, not Bob—never Bob, unlike Roger). Instead, I was most familiar with a cover version by The Whitlams. The Whitlams formed in Sydney in 1992 and released their third album, Eternal Nightcap, (which really felt like their first) when I was in my early years of university. They toured university campuses with high energy but I preferred to listen to them at home, alone, in my bedroom with favoured songs on repeat. It is this album that boasts the cover of Tangled Up in Blue. It was my least favourite song on the album and I frequently skipped over it, preferring Buy Now Pay Later (Charlie No. 2), and No Aphrodisiac. But the reference Geoff Dyer made to a lyric from Tangled Up in Blue “We’ll meet again someday, on the avenue” reminded me of a different song by The Whitlams. It was on a later album, Little Cloud. And I used to play it incessantly on the piano when I lived in Queensland. It was called Keep the Light On.
I do not cope well with endings. Even when I have instigated them.
It is impossible for me to turn off my care, compassion, and curiosity for people I’ve had a connection with—who are or have been friends—regardless of whether they’ve hurt me. Or, perhaps, especially if they’ve hurt me. (There are a couple of notable exceptions to this but I won’t be revealing who they are or my former relationship to them.) I don’t know if this is healthy. But I do know that I don’t know how to operate any other way. I always just want to know that they’re well.
The tectonic layers of our lives rest so tightly one on top of the other that we always come up against earlier events in later ones, not as matter that has been fully formed and pushed aside, but absolutely present and alive. I understand this. Nonetheless, I sometimes find it hard to bear.
Bernhard Schlink, The Reader
My eldest step-daughter lives in the small two-bedroom house that is attached to, but separated from, our main house by a double garage and a small sunroom. Next week, she’s moving to Queensland to continue her university studies (a masters) in psychology and education. While we were eating dinner the other night, G asked me whether I thought that neurodiversity was increasing or if it was just becoming more widely recognised, and therefore accurately diagnosed, and whether that would offer my eldest step-daughter more extensive career opportunities.
Naturally, I looked for statistics. Data is the first thing I turn to for knowledge, understanding, and comfort. In 1997, approximately 1 child in 2,500 in the USA was diagnosed with autism. In 2000, the CDC began monitoring prevalence rates and by 2017, that number was 1 in 68 (Southwest Autism Research and Resource Centre). Although it was noticed that prevalence rates were increasing, long-term expectations and outcomes for adults were unclear. Most group living homes, which had previously and frequently been part of the care of autistic people, had closed by the end of the 1980s.
Despite the wording indicating that more people are being diagnosed today, there is no distinction made as to whether this is because there is a greater understanding of the diagnostic criteria thus more people are being identified, whether it’s because the diagnostic criteria for multiple conditions were rolled into one categorical diagnosis of Autism Spectrum Disorder in the last DSM-5 in 2013, or if the number of people who experience neurodiversity in the form of ASD is increasing within the population. The likelihood is that it’s probably both; prevalence is increasing and awareness and recognition is increasing, thus leading to higher levels of diagnosis.
But regardless of the cause, if the number of people being diagnosed is increasing, it does allow for more opportunities to review and amend an education system that is largely failing the neurotypical community, and barely managing to help (and more frequently harming) the neurodiverse community. I advised that schools such as the Steiner School do already exist and function with a very different ethos to traditional education but that there’d certainly be room for other models if that was the area that my step-daughter was interested in pursuing.
My ex-partner’s current partner’s children (read it again if you need to) attend a Steiner School and I broadly explained the difference between their style of education and the traditional school system and curriculum. I am still friends with my ex, M. He is known as “the nice one” by my step-daughters, and I have explained on more than one occasion that we separated not because anyone was abusive or toxic but because we simply wanted to go in different directions. He was very good to me–better than I deserved–at a very difficult time of my life and it pleases me greatly to see him happy with his partner.
Unfortunately, he and I also have “cancer/caring for someone with cancer” as something in common. Back in September 2019, his partner received a diagnosis of metastatic breast cancer. She was given a prognosis of 12-18 months. It’s been three and a half years and, while she is still in treatment, she is also still here. In addition to her standard medical treatment (surgery, radiation and chemotherapy), she also uses complementary therapies. She had some sort of testing done by a company called Genostics which gave her additional suggestions of other therapies that may reduce the cancer (she has multiple tumors in multiple organs) or, at the very least, keep it in a holding pattern. At the time of her diagnosis, she was told she probably wouldn’t see her son’s sixth birthday but she’s just celebrated him turning eight and the cancer is not yet advancing.
Overall, cancer survival rates are improving. Unfortunately, cancer diagnoses are also increasing. And especially in people who have no family history of cancer. In 2018, a few weeks after my colleague was killed in a workplace accident, a close relative was the first person in our family to be diagnosed with cancer. His cancer is generally viewed as having reasonably strong survival rates but various treatment complications not dissimilar to G’s put that at risk. But he, too, is still here–five years on. Ten years ago, G would not have survived either his cancer or his subsequent neutropenic sepsis but we are now at two years. Medicine and miracles happen every day. Sometimes those stories of survival can be disheartening, though. When G was first diagnosed and I started the process of caring, I joined a couple of groups on facebook for support. They were “generic” carer’s groups, though, and I felt very out of place being so young (comparatively), caring for my partner rather than children or an ageing parent, and not being in financial distress due to our health insurance and workplace sick leave policies. We were extremely fortunate and each of our respective companies looked after us.
At the time, the idea of talking to other people who were dealing with my specific situation–or even just journaling about my specific situation–was not possible. My therapist wanted me to but I all but quit writing for eight months. I could not write about hope and I absolutely could not write about death. Instead, when I had it within me, I wrote about the stars.
There are so many ways in which our stories overlap; in which the tectonic plates of our selves bump up against other people, their experiences, and our own past. It is not fair that so many people I know have to process a partner or parent experiencing a cancer diagnosis and the caring that comes along with that. It is not fair. I understand this. Nonetheless, I find it hard to bear.
It is difficult to know how much to share, here in this forum; I am not writing a book about the year of cancer (yet) which is a different process to blogging. This is open-ended. There is no target word count, no theme to stick to, and no plot or outline to follow. Which means I ramble. Jump around topics, touching on whatever is floating around my mind at the time I sit in front of the keyboard. And yet, week after week, there are readers; you are here. Thank you.
I think about the reader. I care about the reader. Not “audience”. Not “readership”. Just the reader. That one person, alone in a room, whose time I’m asking for.
I say this because I comment on things without thinking of the impact of those comments. I share information that I find interesting that is never meant to be a slight on someone (either directly or indirectly) but can often be taken in such a way. I notice and observe behaviours—out loud—and don’t often consider the consequences to the person about whom I’ve made those observations. I ask why; why would you do that? Which people find offensive. Which, I’ve learned, they interpret to mean I’m judging them/their choices. Which I’m now learning could be part of autism—and not because I’m very Virgo.
Virgo people are frequently maligned for being pedantic, judgemental, aloof, hypercritical, neurotic, ruminative, unwilling to adapt, inflexible, hard to satisfy, too detail oriented, and for always wanting things their own way. While they are worded differently, I’ve noticed many of these traits also appear on the list of symptoms of autism. I’m not making a comparison between astrology and autism–mostly because I don’t believe in astrology. But I now find it troubling that many of my behaviours, which may have been the presentation of autism, I have minimised and laughed off as “just being a Virgo”.
When I first began living with G, he struggled with my constant comments—which he took as criticisms. That wasn’t entirely my fault. Historically, he’d felt belittled and criticised in previous relationships, so his reaction was from a place where comments were not neutral. But for me, attempting to understand why other people do the things they do, or say the things they say, happens out loud. With questions. With comments.
But not with malice. Not with judgement.
My comments do not come from a trait of criticism but instead, from a state of curiosity. An attempt to process the world and the people in it.
I want to know the why of everything.
It’s one of the things that makes me good at my job.
But it doesn’t make me good with people.
And so, after yet another comment, I find myself repeating: it’s an observation, not a judgement.
And, when something I say comes across the wrong way, I’m sorry.
When I get in my car, my phone immediately connects to the Bluetooth. Usually, the audiobook I’ve been listening to begins to autoplay. But every now and then something glitches and I receive a random throwback to the iTunes library downloaded on my phone. There is not a lot of music on my phone—only around six hundred songs or so—but they range from Rachmaninoff concertos, musical theatre and TV soundtracks, through to my preferred genre; indie folk. Tonight, instead of my book, the last refrain of Walk Alone began to play.
For the last two nights, I’ve been outside between 10 pm and midnight with my telescope, waiting. Trying to catch a glimpse of the green comet. But the last two nights have been too cloudy. Tonight, I am back at work, and afraid I will miss the once in 50,000-year event. It will disappear from view tomorrow night and I will again be here, at work. I am trying to not be too distressed about it. Except I am. I want to be one of the relatively few (comparatively) people on earth who get to see the comet with their own eyes. I’ve seen plenty of pictures. But that’s not enough. Armed with new terminology, astronomy would be considered one of my special interests.
I have begun making lists of memories, events, and behaviours that may be relevant to my assessment; you could say autism and its diagnostic criteria have also become a special interest.
Just as G’s CNS lymphoma became a special interest.
In three and a half weeks, he will have an MRI. It’s been a year since his last. I’d like to believe my anxiety about him experiencing a recurrence of the cancer will reduce if the scan is clear. But I’m almost positive it won’t. I want us to have a more normal life. I want us to be able to do things. (Do I?) I want to be able to take my mask off. (I don’t.) But it feels like I should say I want these things. That I should want these things.
One of the guys at work asked me when I would feel safe taking off my P2 mask. And I answered that I would only do it when G’s immune system returned to normal functioning.
In truth, I love this mask. I mean, I love not being sick with anything, that’s great. But what I love more is no-one seeing my face. No-one seeing my mouth move as I run through conversations in my mind. No-one seeing the faces I make when I sit quietly at my desk, processing information in my head. I love it and I never want to take it off.
I have told a few different friends, now, that I might be autistic. And almost all of them have responded with some version of “oh, yeah, that makes sense” which has been validating. So much so, that I have wondered whether seeking a formal (expensive!) diagnosis is necessary—but without it, I don’t feel that I have the right to call myself autistic. Just as without my diagnosis of anorexia, I never felt I could say I had an eating disorder. I fluctuate in my thinking; between not wanting to pathologise the myriad of human behaviour styles and experiences but also in wanting validation that my lack of ability to communicate easily has impacted my life and I’m only now starting to understand why: That there’s not anything wrong with me (though people might say there is) but that I probably just process the world and everything in it differently to others.
What I wonder the most, though, is how I have been able to identify and celebrate these differences in others, while completely missing (and misrepresenting) them in myself? There is a grief in that—in how hard I have been on myself for not understanding, for failing at relationships and communication—that will take time to process.
A few years ago, in the middle of a Sunday afternoon, G was in the family room on his bike trainer about to start a three-hour virtual race on Zwift. He was warming up, pedalling slowly, as the competitors gathered at the on-screen starting line.
“Can we move the safe?” I asked him, having wandered out from our bedroom.
I’d been reorganising our ensuite (master) bathroom and on the floor in a weird little alcove that housed the electrical switchboard was a small safe. The alcove was large enough for a set of shelves where we could store the towels and toilet paper and I wanted to put the safe in the walk-in robe so the space was useable.
He fiddled with his heart rate monitor, glancing occasionally at the race timer countdown on the screen. “Sure.”
I’d already measured the recess and found a set of shelves online that were in stock at a local budget hardware department store that would fit in the space. He would be busy on the bike for hours, enough time for me to run out, buy and build the shelves, install them and clean up. It was perfect.
I went back into the bathroom, pleased I could progress with my project, and began emptying the contents of the safe into a shoebox. Once I had everything out, I attempted to lift the safe but couldn’t. I noticed the problem immediately. It was bolted to the floor. I unscrewed the nuts from the inside of the safe and popped them in the shoebox with everything else.
Again, I tried to lift the safe, and while I could now raise it off the ground, I could not remove it from the alcove. The alcove had a small lip that wrapped approximately a quarter of an inch across the front of the safe, making it so tight that I could not tilt or turn the safe in such a way as to remove it from the space. I marched back into the family room.
“You said we could move the safe!!!” I said, loudly (and completely unaware).
“Yeah, you can,” he replied panting and puffing, the race now in full swing, “do whatever you want with it, it doesn’t worry me.”
“I can’t!” I said, even more loudly than before. “I can lift it, move it up and down, but it doesn’t come out of the alcove. Why did you say we could move it if we can’t actually move it?”
The conversation disintegrated. He was pedalling, racing, and through gasps and huffs, said he was done discussing it. He didn’t want to talk about it while he was trying to race. I didn’t want to do anything except talk about it. I wanted it resolved, and I wanted it resolved now. I felt betrayed. I did not understand why he would say I could move the safe, if I could not, in fact, move it.
I marched back into the bedroom and unleashed my anger in a text to a friend. Before her reply had come through, I already knew what I had to do. I had been using a tool for a few years–a process called “The Work” by Byron Katie. And I began the Judge Your Neighbour worksheet.
By the end of the worksheet, I had calmed.
G has not, nor will ever, intentionally hurt me. He has, on occasion, hurt me accidentally but I know these instances are exactly that; accidental.
And in that same way, by working through the questions Byron Katie has you ask yourself in The Work, I realised that we had been discussing two different questions.
My original question was “can we move the safe?” but what I actually meant was “is it physically possible to move the safe?”
He answered “sure.” An affirmative.
Because the question he heard when I asked “can we move the safe?” was “do you mind if we move the safe?”
One question; two very different interpretations.
That was why I became so distressed when I was unable to move the safe; because I had understood that he said “sure” to my indirect question of “is it physically possible to move the safe?” meaning that when it wasn’t possible, I felt he’d lied.
When he got off the bike some hours later, I explained all of this to him, what I’d worked through and what I believe had happened with our communication. Since then, when we find ourselves in a sticky confusing communication situation, we often look at each other and ask, “are we trying to move a safe?”
And then we start over and clarify exactly what it is we are trying to communicate. It doesn’t solve everything but it has helped having a shorthand signal to suggest we might not be looking at things from the same frame of reference.
Last night while walking the dog around the neighbourhood, the smell of wood smoke permeated the atmosphere. February is typically the hottest month of summer in Australia with temperatures between 80 and 100F. Instead, as a light rain fell and the temperature was 50F, people were lighting their wood heaters.
Today is supposed to be decompression day after my shifts and, also, my mother’s visit. But I do not have much of a reprieve, as I have already agreed to overtime tomorrow night and have a four-hour work safety meeting on Wednesday, before starting my shifts again on Thursday night. Which means Tuesday will be my only official day off, as Monday has now become a zombie day.
A few nights ago, unable to sleep, I was hunting for an old blog post; something I wrote a long time ago that has been on my mind the last few days. I couldn’t find it then but I did find a post about the dog I’m looking after. I’ve been friends with the dog’s owner for over eleven years and in the post, I wrote: he told me the dog cries when I leave. I’m not sure why this stood out to me but it did. I had forgotten he told me this but I have always had a connection with the dog.
Tonight, I found the post I was looking for. I wanted to find it because it referenced two very specific scenarios, which, in my current state of exploring what autism looks like in women, seemed relevant.
An excerpt from my blog, first published in July 2011 (on the same day Goyte released Somebody I Used To Know with Kimbra):
I’ve been thinking about it for a while. The disconnection I have between experience and emotion. Is it odd, do you know, to be diagnosed with bipolar, and to have depressive and hypomanic episodes but not really feel all that different no matter on which end of the spectrum I seem to fall at a particular point?
I’ve spent a long time closing things out. People, mostly. Or at least, a connection with people. A friend reminded me recently of a conversation we’d had on my balcony. She said that she was pouring her heart out about an old friend of hers who’d moved to South America and whom she’d been planning to visit later in the year. And this day, or perhaps the day before, he’d asked her not to come.
She relayed that she’d laid all this bare on the table in front of us, over a glass of wine and a cigarette and had told me how upset she was. And then she said, you said “Isn’t the pattern of the lights on the apartment building across the street interesting?”
She was angry at me. She was angry that I’d feigned interest, pretended to care…but had, it seemed, been bored by her conversation. I was surprised by this. I’d not been aware of it at the time, that she was upset, not just about her friend’s request, but by my response.
I apologised. I wasn’t bored, I said. Nor pretending to care. I simply didn’t know how to respond. I explained that I didn’t connect with the feeling that she’d been having. I wasn’t able to relate to it. I don’t have feelings like that.
This episode with my friend has only served to confirm my suspicions that I do not feel things the same way normal people do. I do not see things or read things the way that others do. I do not. I don’t even know if this is a problem. It’s never been for me, but it seems it is for others.
I’ve been working with my new therapist now for almost 6 months. Every now and then, I’ve gotten teary during an appointment. Her first question is always “What’s going on for you right now? What emotions are behind that?” and my reply is always the same. I don’t know, I say. I just feel confused.
Last session, she reminded me of an appointment I’d had a few weeks earlier. My friend had moved overseas. I was…crying. But I couldn’t explain why. The feeling(s) that should have accompanied that reaction were missing. Absent. She said that something strange had happened during that session. She said that when she’d questioned me about it, I’d looked at her directly and held her gaze. Most people, she said, would have looked away, but I stared directly at her and “locked on” as she put it. She could not read me at all.
We discussed my perceived inability to feel. I asked her if she thought that it was possible to lose the ability to feel, that is, if you did not use it – this emotional thing…does it die? …in a similar way to the way that a muscle, when not used, atrophies. Because, I said, I don’t know that it’s even possible for me to feel.
Do you want to? she asked.
No, I said, not really.
Would it be helpful to talk about feelings from an intellectual perspective, she said, instead of from an emotional perspective?
Yes, I said. Probably.
And so we’ve started. At my last session, we discussed the emotional response. How there is a triggering event, the internal things that happen within your body, physiological responses, neurochemical responses…and the visible external cues that people see.
Except that I don’t see them in you, she said. When I think you are upset, that is when you’re hardest to read.
Sure, I said. That makes perfect sense. Why would I let you see that you’d upset me? Or that I was angry? That all just gets locked in…if it’s even there in the first place.
But I have a question, I said. What causes the shaking?
Shaking? she said. What do you mean?
Well, whenever I have to talk about something I find uncomfortable, I shiver. It feels uncontrollable. It feels like it’s visible to everyone. Sometimes it is. Sometimes I shiver and shake so hard that my teeth chatter. But I just look like I need another blanket.
She’s going to look into it.
My homework now is to keep a diary. To record the situations I’m in when I notice the shaking. What has happened. Who am I talking to. What are we talking about. To see if we can identify a pattern.
I like patterns.
Particularly of lights on buildings.
Earlier this afternoon I sent the dog’s owner a message and told him I’d been exploring the possibility I have autism and have referred myself for an assessment. He said: Well, as someone who knows you, and someone who spent two years working closely with people with autism, there could be something in this.
I have always loathed speaking on the telephone; it causes me severe anxiety. And I have enough anxiety just speaking to people.
A few weeks ago, I was forced to make a phone call. The call was transactional in nature, a discussion with the bank (I suppose with a banker) about a loan application. We’d been provisionally approved but were ready to make an offer and needed to commence full approval.
After I hung up from the call, G said “why are you so rude on the phone? He’s trying to help us!”
I was shocked—I had been polite (I thought), monitored my tone and been light and breezy (I thought), I didn’t know what I’d done wrong.
About a week later as we finalised the documentation and received sign-off, I had another conversation with the same person from before. I was even friendlier this time, and I thought, I’m nailing this being nice on the phone thing this time.
And when I got off the call, G said, “why do you do that? Why are you so abrupt?”
I tried but I could not stop the tears. I had been so sure I’d improved, been pleasant, friendly, definitely not rude. And here I was, finding out I’d failed again.
When I was a teen, I had one person I spoke to on the phone. A friend I still have to this day. My parents often made me answer the phone or make calls due to my fear—i suppose they were trying to cure me.
But having heard many similar things about the way I speak, the way I address people and the tone of my voice for most of my life, I started to google.
Cousins, their kids, and others in my immediate family have been diagnosed with autism over the last 20 years.
So I searched for a specialist assessor who works exclusively with adult women and now I am on a wait list.
Last night, unable to sleep after my mother left, I came across a site that has a self-diagnostic test. Despite some problematic language, the test has a 97% accuracy rate when self-administered.
I answered all the questions, and while I waited for it to score, I wondered how I would feel if I scored close to 65, which is the minimum score that is suggestive or indicative of possible autistic traits. Especially if I scored between 60-65.
But. I needn’t have worried. My score was 159.
Addendum: I have taken an additional four quizzes today and tested above the threshold in every single one.
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