February 23, 2023
Various things in the last few years have alerted me to the terrifying fact: I don't think I had an attention span at all until, well, now.
That I was able to graduate from college, get married, hold down jobs... privilege, and opportunity.
Most of the time, I was told that I was that way because I was simply careless, lacked attention to detail, and that was just who I was.
Deep down, I disagreed, but I did not have any other data points that would show that all of those terms were incorrect.
My first inkling that something might be wrong was when I found myself utterly insomniac and unable to sleep for months at a a time. That was about a decade ago. The feeling I most remember was, "It feels like I have a million ants under the skin of my body!" But no one believed me. That was probably the precursor to a lifelong struggle with thyroid diseases, that was to come.
Then, I realized that I probably haven't ever had a good night's sleep. Every photograph of me as a baby has my mouth open, as if gasping for breath. I took it to an experienced doctor in the US, who told me I most definitely have had sleep apnea since I was an infant, and that if we were to do a sleep test today he would be surprised if I wasn't in the high moderate or extreme range. He was correct.
Eventually, I got both issues looked at, and mostly sorted. (These things don't fully go away, but can be managed.)
Putting aside the issues of not being heard or believed as a young woman in medical system (something that all minorities face, all over the world), I'm pretty pissed. How was I allowed to live through most of my life in such suboptimal conditions?
Why is it that people were happy to just say 'oh, that person has the attention span of a gnat', but nobody asked why?
It seriously impeded my way of life. It got in the way of living, doing, existing. I could not remember anything. I could not wake up for important tests, meetings, interviews. I could not even reliably put a piece of paper in a folder, keep it there, and remember that I had ever done it.
These days, they call it 'executive dysfunction'. But that's a nice term for 'it's your fault until you find a name for it and figure out how to fix it, and get mad that it could have been a reasonably easy fix'.
Oh, I also have ADHD. But I'm not sure which came first. Am I unable to focus on things because I didn't sleep properly for years, had a severely wonky thyroid gland, or is it a bit of everything? I may never know.
What I'm finding out is that it's wild, what I can do with an attention span!
I can file my taxes well ahead of the deadline, and receive my refund before anyone else!
I can pay rent well ahead of time!
I can figure out what I want to do and actually do it!
I'm relearning CSS and JavaScript right now, because I feel like I did not have enough of an attention span or focus back when I first learned it. It's also useful because so much has changed since—like CSS is actually fun now!—that I don't mind.
I'm learning that I am able to sustain a creative pursuit on the side. I have spent a gargantuan amount of effort consolidating my hard drives from Singapore and Malaysia and the US and everywhere in between that, for the first time I believe I have all the writing, photography, video files, that I ever created, in one place. And actually be able to find them. This was not something I was remotely capable of doing at any point in the past. If something was not immediately before me, it did not exist. I have written entire books that I have forgotten I have ever written!
I can even shoot, develop and scan film on a regular basis, something I was never able to do! (I could not even remember what film I used, or where anything was, until now.)
I think most of the people in my early life were happy to buy into the myth that I was a bumbling, forgetful creative person, or to ascribe some kind of pathological shortcoming or disability to me, but the truth was simply that I was a person who needed help, and didn't know that I did.
As it turns out, being autistic and being not at all in tune with your body or with what's normal or expected, not knowing how to ask for help, has health and other vital implications! If I could do it all over again, I would have learned to pay more attention to my body, and learned to apply my autistic superpowers to all facts of life: by digging deep into why something was, rather than simply accepting that "that's just the way I am".
March 16, 2014
Two years ago I found out I have an autoimmune disease. I will always have it. It changed everything about my life from what I do for money to where I live. It prompted a reinvention of myself which was at turns painful, but ultimately necessary. This is what I learned.
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Never forego sleep. "You'll sleep more over the weekend" is bullshit. Not sleeping is bullshit. There is no amount of money in the world anymore that can make me sleep less, even if I grumble about it: I'm convinced sleep is the single most important thing I will never, ever give up again.
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Make your own destiny. The single best thing I have done in my 20s was to grab every damn opportunity that came my way. And there were plenty. Even if people can't see the method in the madness, every little thing adds up. I truly believe that.
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Be nice to your family. At least for me, they've been the foundation upon which I've been able to build a life. Through illness and in health.
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Home is home. There are many reasons to not want to live in Singapore, but returning here to build my adult life here in my late 20s was the best decision. There are a ton of opportunities and we are in the centre of exciting things, at least for what I do in tech and business.
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Surround yourself with smart people who care about people. I've been lucky to have some of the smartest people in the world in my direct orbit. I've learned an immeasurable amount from them. It's the only way to be better. If they're douchebags, nothing you learn can ever be of use.
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If you need anything, just ask. There's a longish essay in this that I need to write sometime. If you don't know anything, ask as well. Only good things can ever come out of asking.
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Don't date people who want to hold you back. Or down. Ever.
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Do date someone who inspires you to get up every morning and change the world. Who won't laugh when you say that. Who will ask you what part of the world you would like to change today, and how she can help.
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Milestones are a sham. You're expected to check certain boxes by a certain time: degree, first job, first apartment, blah blah. It's not that they're not important, but following someone else's timetable for your life is the biggest lie we've all been told.
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Corporate conferences are never worth any amount of money you are asked to pay. Ever. If there is a giant billboard and a roomful of suits, go to the bar and do some real work instead.
November 19, 2013
A year and a half ago, my friends sent me to a local emergency ward in Singapore when I moved in and out of delirium in the middle of dinner. I had been unwell for a long time, but there had been no suitable diagnosis or treatment. I lost nearly 20 kilograms, had the shakes, became insomniac, and most of all, emotionally and mentally unstable. Once diagnosed, it isn't a terribly awful disease; but the number of adjustments one has to make is astounding. Friends and loved ones too, struggle with dealing with the external impact of your disease, and will have to do so for a very long time.
To say it can have a dramatic effect on your life may not be an understatement. Nearly every Graves' patient I know personally has experienced one or all of the above: unplanned career changes, closure or reorganization of business enterprises and any other financial responsibilities, breakdowns of relationships including marriages, and the list doesn't stop there. Some of your partners or friends will think it is not a big deal and that you are overreacting: after all, it's just that a tiny butterfly-shaped gland near your throat has elected to produce hormones at a different rate, right?
It could not be more wrong.
That tiny butterfly-shaped gland near your throat is also inscrutable, and controls many aspects of your life and health that you take for granted. One of the key things it affects is your mood, if untreated or treated inadequately. If you've always been cheerful, optimistic and bubbly, imagine becoming a different person for hours with no warning whatsoever; breaking down crying when your bus doesn't arrive, or when your toast is burnt. If you've always been confident and dominant, imagine becoming daunted by small tasks you do routinely - and being confused as hell about it. If you've always had a superb memory to the point you've never had to write anything down to remember them - imagine forgetting, every single time, the door code to get into your office. Every time you go to the bathroom you get locked out from work because your brain just isn't keeping pace with your body.
Scariest of all: nothing else seems to matter. The business you've built for years. The career you've devoted your life to. The partner you've made plans for life with. It's so necessary to walk away from all of that, when you aren't yourself. It's tempting to think about leaving everything and everyone because nothing's working anymore and you want no part of it. It's easier to quit. Which is also weird, especially if you've never been a quitter.
I tried, and still try, to lead a normal life. I take my meds everyday, but am constantly thinking about what more I can do. Should I drink radioactive iodine? Remove my thyroid gland completely? I don't particularly want to do either especially since neither of them have a sure shot or even a good shot at curing me, and may potentially work out even worse. I want to eat my meds daily and eventually come to a point when I don't need them anymore. Most days, a year and a half on, I'm back to being myself - by that meaning a completely different person from when I got diagnosed. A different person from the one that made bad decisions because I did not know the extent of my disease or what it does to me, when I did not know I had the disease at all. Now that I know how it affects my cognitive processes, my emotional lability, my physical body when the symptoms return when in remission - I try not to notice. Most days, I succeed. Yet it never feels like it's enough.
We still haven't gotten it right. The meds work and then they don't. My body, through no input from me, suddenly decides it loves making my heart jump out of my chest when all I'm doing is sitting in a car. My mind decides it wants to react in entirely unwarranted ways: I'm the life of a party one mind and the next moment I can't even hold a conversation with anyone.
I'm seeking all the best medical help I can get but it's still an incurable disease that affects everyone differently and in different ways at every stage in your life. I don't know if I'll ever be done: all I can do is manage my expectations, and other people's. I know my limits: if I can't work, socialize or be normal, I have to make sure people know it isn't me, it's just this dumb disease. Sometimes I don't even know who I am or what's happening. I've come close enough to get to a point where my levels are supposed to be normal, normal enough to get off the meds completely to see what happens next. But even before we can try that, I'm relapsing - like a damned yo yo - and I have no idea what will happen next. It's a dumb disease.
Just some dumb disease I'll have forever.