kaigou: this is what I do, darling (4 no sacrifice)
[personal profile] kaigou
[continued from part 1]

Ms Lindholm, you wrote: "The only person in my extended family who ever took drugs for his condition long term did not achieve any success until he weaned himself off them. Is that unique? If your brain is wired a certain way, is it truly an illness? Or is it ‘artistic temperment’ [sic]?"

Sometimes, taking the medication is enough to raise the roof, give a little breathing room during which you can learn new coping mechanisms, which then are kept even after the medication's stopped. I've done that myself and know plenty others who've done the same, especially when the medication is one that'd be crazy-negative long-term. You weigh the odds and decide with your doctor if the short-term gain is worth it.

Sometimes, though, it's not really that things got better afterwards. Sometimes it's because you just can't pay the emotional costs of taking it. Refusing medication, even at the cost of one's sanity, may still appear preferable over living with family who implicitly, even explicitly, will be reminding you every day that your medication means you're an incomplete, inadequate, failure of a human being.

Sometimes it's not even true that things got better after going off the medicine. Our society equates "medicine" with "feeling bad", therefore, feeling good means no need for medication! Off the person goes, which is fine if we're talking curable disease. Not so fine when it's a lifelong (if manageable) condition, because sooner or later, that untreated condition will backlash full force.

Sometimes, it's a matter of severity, so to say that one person can do without and that therefore all those who cannot must be suspect, and that's simply unfair. ADD/ADHD also has levels of severity, and I wouldn't curse even my own worst enemy with the level I've got. But I've also known people for whom the ADD/ADHD is a quiet but subtle influence in their thinking, with the noise on center stage a constant rumbling but never an overwhelming cacophony. Plenty of people with ADD/ADHD manage, somehow, to hang in there and keep fighting despite all the ways in which the disability can sabotage their every effort.

Despite that, it's both unfair, and cruel, to say that because you know someone for whom two aspirin got rid of a minor headache that this gives you the right to question those of us suffering from migraines so severe we want to lay down and die. Instead, Ms Lindholm, you should be counting your family member as lucky to have escaped with skin relatively intact.

Unless, of course, he chose to sacrifice himself upon the altar of your family's derision.

Only the privileged -- who fail to realize their own disabilities, or whose disabilities are so socially acceptable (or culturally acceptable, like the 'temperamental artiste') that the disabilities are excused or just disregarded -- could, would, sit where you sit and say that because it doesn't bother you, and you've learned to live with, and capitalize on, your own cognitive issues that we should all fall in line and do the same. Your industry lets you do that. Your industry is very much about as far from the norm as any industry can get.

Although it's not stated explicitly, let's presume, for a moment, that you're referencing an outsider's observation of ADD/ADHD-like behaviors or symptoms in your daughter, of a mid-level severity. From your reports of your daughter's words, it looks like she's also aware of the potential diagnosis. Let's talk a little about what your daughter will face in life, if she has ADD/ADHD and no tools to address it, cope with it, or alleviate it.

You say your daughter "[lost] her car keys with a major term paper locked in the trunk" that you finally found, yourself, in "the bottom of the back pack that she had searched three times." You also observe: "Twice now I have watched her complete the same set of missing assignments for an important class. Twice now those completed assignments have completely vanished. It is ... making her look not just lazy but deceptive to her teacher. I think she would almost rather take the F’s than ask her teacher, yet again..."

You know why she'd rather just fail? Because she's probably well-aware that her classmates know she's getting special treatment. To them, there is no apparent reason why she should be accorded such special treatment, and they're going to resent her. Oh, she might try to explain the way her mind works, but she won't, because she knows they won't understand and will only see her as deficient in some way.

She's going to learn to pay careful attention to the nuances of a professor, and she may even learn to manipulate the system to get that special treatment. Not because she wants it -- in fact, she'll hate herself, just a little, each time she asks for it -- but because she needs that additional room, and yet it's a need that others resent and teachers don't always understand but for which she has no other options.

Under stress, the thirty balls juggled in the air will become thirty-one, and they'll all come crashing down on her. Under stress, we all sleep a little less, and a little less well, and we don't eat right, and these minor details for someone else can spell absolute disaster for a brain already teetering on the edge of severe frustration in juggling past that five-minute limit. Under stress, she will crack, unless she's given that extra leeway by a teacher or a boss or a spouse, and she will hate herself for this perceived failure on her own part.

She'll tell herself she's a failure because she couldn't do it right the first time. She'll tell herself she's a failure for all the reasons of comparison that she even told you, outright, Ms Lindholm: "Her friends don’t forget things or lose assignments. Her friends don’t forget important after-school meetings. Her friends are focused and level and successful where she is scattered and only becomes more so under pressure." Compared to them, she is a failure -- and if she tries to do anything to address this, then no matter what she achieves, she becomes a failure on your terms, Ms Lindholm.

Like the majority of people on this planet, your daughter will probably go into some kind of job where she's required to complete tasks by a certain deadline. Her inability to control her concentration-points will -- if she's not lucky enough to land in an industry where scattered/diffused attention is an advantage -- probably cost her a job. Actually, it will probably cost her a number of jobs.

There'll always be something that causes her to fail -- losing two assignments, in quick repetition, for instance -- until her coworkers will whisper that she sets it up herself, that she's purposefully self-sabotaging. Assuming, of course, they don't interpret her as purposefully sabotaging the work-project, itself. She'll be aware of their whispers, and she'll work herself even harder, spiraling the stress even higher, until she cracks. She'll be the kind of person who comes in with amazing promises and potential, only to eventually shatter by the end.

She may not even ever finish projects, at all. The need to concentrate, to remember what comes next after completing this stage -- without massive and unyielding pressure from within (or a very understanding assistant willing to nag, from without) she'll probably completely forget that there is a next step, and turn in a project half-done. Or simply not finish it at all, and never think to notice it's not complete. That piece of information's been drowned out under the overwhelming chaos of all the other information coming at her.

She'll learn, then, to laugh at herself even as she hates herself, as she sees herself as a failure. She'll learn to hide her frustration, her anger at her own inability to "do everything" her friends and coworkers do. She'll learn to hoard work to herself, so her failures and incompetencies and special extensions aren't revealed to her peers, and that'll just compound the juggling-frustration even more, until it buries her.

When it does, it'll bury her under a ton of depression. That's almost always co-morbid with ADD/ADHD, even if from the outside, the average ADD/ADHD person sure looks awfully manic, cheerfully jittering from one random piece of information or conversational topic to the next. That's not cheerful, manic, tap-dancing, that's someone running just to stand still. It's exhausting and wearing and cumulative, and it can crush the person under the weight of all the ways they can't take in, process, and manage information like their peers.

To be fooled by those outer appearances (as so many are) is akin to watching a half-blind person feel across the front of a suit in the closet. You're welcome to interpret the behavior as someone with strong sensuality, who likes the feel of the fabric under her hands. Maybe she does have that, when she can, but just then she's too busy feeling her way across the suit to the buttons, so she can identify what she holds. That person, like the daughter in question, has learned not to tell anyone this, but to fake it, even to desperately fake it, so that no one will realize how much she's struggling, how far short she falls, that she must feel for the buttons.

It's so she doesn't have to hear, "what, are you stupid? the buttons are right there!"

Because to her brain, in this analogy, the buttons are not right there, but she'll learn very quickly that trying to explain this -- to all but a sacred few -- is pointless. Like you, Ms Lindholm, they won't hear it and they won't believe it and they won't care. So she'll learn to fake what she's doing, and why, and let them believe that she dashes from topic to topic, from project to project, from suit-edge to button, for whatever ignorant reason they invent, and she won't tell them. She'll bury her secret as deep inside herself as the ADD will bury her.

She'll learn to apologize, and doubly so because as a woman, she doesn't get a lot of the benefits that a man gets, in the same circumstances. When a man drifts off mid-sentence or mid-project, he's thinking about Serious Things. When a woman does it, she's just wool-gathering. She may even learn that her expression scares off potential friends, because a man frowning in concentration is again with the Serious Business, but a woman doing it must be a bitch. She's not frowning, though, she's just fighting with every ounce of her energy to juggle a limited number of balls without dropping any and without letting her diffused attention lead her astray.

But no one will see that, and she'll learn to accept that co-workers just assume she's an unhappy, or bitchy, or hard-to-please person -- if they don't assume from her obvious scatter-shot and scatter-brained approach that she's a flake and a bubble-head and of no substance. She will spend an awful lot of her time hating being around other people even as she likes them, because they're often a reminder of everything she could be, if only. She'll live as an amputee around marathon runners: certain that she could be that distance-eating grace, if only she had the tools to replace her missing leg. But without that, she'll spend her days covering up -- almost literally -- where she lacks in comparison, and making up excuses for why she didn't win the race, or even keep up with her team-mates, until the day comes she stops trying to run at all, because it's just not worth knowing she didn't measure up, one more time.

She'll be the person who never lives up to her potential. She'll be the person who may be fun to be around, and always has twenty ongoing projects at home, but never finishes any of them. She'll be a living embodiment of out-of-sight, out-of-mind: she'll be late to interviews, dates, appointments, and meetings, and the more she's stressed, the greater the chance that some chance Discovery show will snap her frustrated mind into hyperfocus. The tub will fill over, the water will boil down until the pot catches on fire, the dogs will break down the door in their desperate need for a walk, and she'll not have eaten in two days, hyperfocused into excluding all else in a last-ditch attempt to somehow, someway, get something done without distraction-diffusion tearing her away.

She will learn to hate her perceived failures, and to hide them. She will learn to mask the way her brain works, and to be ashamed of the fact that there's nothing she can do about it -- nothing you don't condemn, that is -- and that instead, she must pretend and fake it and live with the fear and anxiety that others will discover her shame. She will learn, above all else, shame: for not achieving what others manage apparently so easily, for not being able to remember tasks without twenty reminders, for losing things so easily, for over and over having to ask for another extension, another chance.

If she's really lucky, she may end up in a career where her hyperfocus can be used, at least, if she's even got that skill. Something quiet, something that requires extreme concentration. It'll exhaust her, and burn her out, and eventually crush her, but she'll tell herself it's better than always turning in incomplete or inadequate or rushed projects. Of course, if she's an extrovert who'd like to be around other people, that's just as soul-destroying as well, to be in a silent locked room devoid of distractions or external noises or all the other tedium of stimuli that other people take for granted, juggling thoughtlessly. She'll learn to accept that her peers will see her need for quiet, secluded places while working as terribly anti-social, if not outright entitled if she thinks to request an empty conference room instead of working at her cubicle like everyone else.

If she's even luckier, she'll find someone who'll teach her some healthy behavioral coping mechanisms. She may even find someone who'll instruct her on her rights as an employee to ask for concessions, and give her tips on how to sneak those concessions past a boss who refuses to see cognitive disabilities as anything other than an over-demanding employee's self-delusion.

She'll learn how to hint at things, with friends, and she'll learn what kind of reactions are a sign the potential friend (or lover) would consider her disability to be her own fault. Yes, she probably will lose at least two major emotional relationships due to a lover being convinced her disability is either a childish play for attention, or -- if she breaks free of you and tries medication -- she'll learn that some people consider medication to be an elaborate ruse to cover up the fact that she's really a drug addict.

She'll learn that she can't win; she can only hope that she doesn't lose quite as badly as she fears.

She'll internalize a certain mindset, and eventually even learn to go out of her way to avoid the risk of hearing it again, if only because she's learned to say those words to herself, and can't take hearing them from yet another teacher, co-worker, spouse, boss, friend, or parent: that she just needs to grow up, that everyone has days when they feel down or can't concentrate for all the noise, that if she just tried harder she could do it, that she's just being immature, that she's asking for too much and doesn't deserve special treatment because there's nothing wrong with her and it's all in her head and she's just being a prima-donna, a diva, to expect anyone to make all these concessions, any concessions, because really, she just needs to get over it.

Would you tell someone with myopia that he simply needs to grow up and he'll be able to see more than arm's length from his nose? Would you tell my father that he's just being immature when he requires the elevator instead of putting his heart through the strain of climbing too many stairs at once? Would you tell a diabetic that if he just tried harder, he wouldn't need to regulate his blood sugar levels? Why on earth would you tell those of us with learning disabilities, then, that we bear the sole burden for our condition and that our attempts to alleviate that condition are a sign that we're bad people?

You even question, Ms Lindholm, whether taking medication means taking it forever, or only until one is out of school. What? Is there an expiration date on treatment? Can you really be serious? Do wheelchairs and seeing-eye-dogs and insulin shots suddenly become inappropriate disability-treatments after forty-eight months? If medication alleviates a condition, any condition, and that condition is not one that "goes away" -- ever -- and not one for which there is a true "cure" -- why does this single condition get your resentment and your narrow-minded, priggish, self-righteous condemnation?

And why, on god's green earth, would you subject your own child to this life, instead of giving her every possible option -- behavioral, psychological, and medical -- to make sure her life is one of quality, and not one of frustration, helplessness, and constant self-hatred and self-doubt? Why would you, how could you, do that to your own child?

When my dog was in her last few months of life, she'd lived a long time but the end was obviously coming fast. Her body was shutting down, though her mind remained sharp. I did a lot of soul-searching during those months, because I was facing the ultimate question: what do we mean, really, by 'quality of life'? Eventually I realized: what matters is whether there's the opportunity for bettering any given quality. If, as did Odetta, you reach a point where what you have is misery and there's no chance for improvement, then perhaps you're beyond that threshold. But that also means that so long as you do have that chance, then you should take it, because even the tiniest bit of better is still better than nothing at all.

You learn a lot of stuff, once you're diagnosed with a disability (and often times, even before that). You don't enjoy most of it, but when there's a tool available to make your life even a fraction better, you take it. You grab it with both hands and you don't freaking let go, because even a fraction better is still better than nothing at all.

Ms Lindholm, you wrote:
Another sadder tale was the young friend who applied for the military academy and was told that until he could go a year without the drug, he could not be admitted, as it was classified as amphetamine use. And having used the drug for years for his school work, how well can he do Academy work without it?

He can't.

We who rely on that medication to make it through the day in one mental piece see this as viciously unfair, as tantamount to refusing to let a myopic person wear glasses, or taking away an amputee's prosthesis. We are fully aware that there are those -- who do not need the medication as we do, who see this 'drug' as a 'drug' -- who would use and abuse and sell and buy the medicine for other, negative, purposes. We resent the hell out of laws, and politicians, and teachers, and coworkers, and people like you who not only declare that our medical needs -- solely because of the medication in use, a medication proven most effective for our disability -- are suspect and repugnant because of how other people use it -- but then top it off by saying that because we require this medication to achieve any quality of life that we are the ones at fault.

What you are saying is equivalent to this: "Your father must take this medication to keep his heart beating. But this medicine is also used by drug addicts! Therefore not only should your father not take the medicine, your father is at fault because he can't do anything without the medicine."

My father wouldn't just be at fault, he'd be dead, Ms Lindholm.

Why on earth should I, who happens to bio-chemically respond best to a medication that others have abused, be given any less respect than my father gets for taking his medication? How can you claim to have compassion for human beings and yet simultaneously declare that not only is the person guilty by association for someone else's mis-use of a medication, that the person is already guilty of failing on the grounds of needing the medication in the first place?

You say, "Some of us are just not standard issue people. I rather suspect that all of us are not standard issue people but some are better at pretending." I say, if there's one thing you learn from a learning disability, it's that there really isn't such a thing as 'standard issue people', and that raising the notion is really just a strawman. Not even a good one, at that, because in a way, we really are all speshul snowflakes, down where it matters.

But I don't want or care about being a standard issue person. I challenge you to find a single person who wears glasses, or uses a cane, or a hearing aid, or a prosthesis, or takes medication for a cognitive disorder or a congenital disease, or uses any other modern-day tools to help live with a disability. Not a single freaking one of us, I promise you, does it because we aspire to being 'standard issue,' and I resent -- as I suspect many others would, as well -- your insinuation that we're somehow lowering ourselves, by using the tools and mechanisms (behavioral, medicinal, physical, and otherwise) available.

I pity your daughter, Ms Lindholm, and I pity you, but my sympathy is reserved for those readers of yours who, in all innocence, read your post -- and other big megaphones like you -- and internalize the self-destructive, soul-destroying message you're braying. I can only hope they move onto wiser pastures, to find a community that will give them the strength to dismiss as unimportant such narrow-minded self-righteous tripe as yours, Ms Lindholm.

ADD/ADHD is not an illness. It is a disability. We accept that we may never be whole by your standards, but this does not make us broken. We don't want to be standard issue; we want to be happy; we want to be proud of ourselves; we want to be free of your brand of shame. We want our lives to have quality, and we want ignorant, privileged idiots like you to shut the fuck up.

You can comment here, or return to the original post/first part and comment there.

Date: 14 Jun 2010 11:51 pm (UTC)
tesserae: white poppies in the sun (Default)
From: [personal profile] tesserae
Beautifully written, and so, so true. And I would add that while the daughter's second grade teacher and maybe her college professors know something about what she's dealing with as a person with ADD/ADHD, chances are exceptionally good that, however much they might want to, the teachers in the vocational programs so many kids who are *bad* at school gravitate towards often don't, and nor do the grad students teaching the study sections at big universities. And even if they know, they may simply not have time or institutional support for figuring out how to make things work a luttle better.

And as you say, her boss & workers almost certainly won't...


Date: 17 Jun 2010 08:59 pm (UTC)
kass: white cat; "kass" (Default)
From: [personal profile] kass
This is an extraordinary essay. I started reading it because [personal profile] jae had pointed to it and I figured I would enjoy a satisfying fisking of Ms. Lindholm's initial essay; by the end, I was wildly applauding just because this is so powerful a piece of writing and so true. Thank you.

Date: 20 Jun 2010 08:38 pm (UTC)
christie: (Default)
From: [personal profile] christie
This is an awesome, awesome post!

Date: 24 Jun 2010 05:46 am (UTC)
lo_rez: green-on-black classic radar circular grid (low-rez radar screen)
From: [personal profile] lo_rez
I was diagnosed so late that it feels too late, in a lot of ways: so many failures, so many layers of co-morbid pathology, so few employment alternatives, and no health insurance (thank god for dex; it's a blunt instrument but it's generic). But your eloquence gives me hope, even though I had to walk away from the computer every other paragraph because the truth is so painfully raw. I am really grateful to you for posting this publicly.

Date: 24 Jun 2010 06:19 am (UTC)
From: (Anonymous)


Date: 6 Jul 2010 09:34 pm (UTC)
cheyinka: A sketch of a Metroid (Eeek! A Metroid!)
From: [personal profile] cheyinka
(I have so many tabs open I don't remember who linked me here.)

This was a very well-written essay - I hope that it changes at least one person's mind, whether it's someone who's a shame-peddling parent or teacher, or a shame-imbibing child or student...

Reading it really did renew my sense that if I had been prescribed Ritalin ten or even only five years ago I might have accomplished so much more, disappointed so many fewer people, hated myself so much less... but my mom was convinced I didn't have ADD, and I was convinced that I didn't want to be on any "addictive" medication...

thank you.

Date: 25 Jul 2010 06:29 pm (UTC)
From: (Anonymous)
Hi. As someone who is 40 years old, newly diagnosed with ADD, struggling to figure it all out every goddamn minute of my life with this new perspective, just, thank you for putting this all together. Thank you.


kaigou: this is what I do, darling (Default)
锴 angry fishtrap 狗

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"When you make the finding yourself— even if you're the last person on Earth to see the light— you'll never forget it." —Carl Sagan

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