Distress Data Diary

Dear Diary,

Wait a minute, this is a migraine diary; useful and important, but not such a “dear” topic.

Dear Diary,

Today I had another migraine.  The symptoms included:

As mentioned, I’m putting together a diary of migraine details for an upcoming appointment with a specialist. The other week I had one so bad that my son had to take me to my GP for a Toradol injection, to be taken with a fresh dose of Imitrex — “fresh” in both meanings, because earlier I had taken my last and slightly-expired pill.  I’d planned on asking the pharmacist to order a refill, but of course, had been unable to go into work at the grocery!  (The irony.)

“Have you made an appointment with a neurologist?” asked my doc.

“Headache speshlist; don’ remember whom.”  I held my wallet in front of my nose and squinched one eye open a millimeter to pull out the correct business card.

“Oh good, that’s just the person I wanted you to see.  Takes forever to get an appointment, though.”

“In April,” I mumbled.

“Yeup; takes forever.  Okay, I’ll have the nurse come in with the injection, and I’m writing you a ‘script for some more Imitrex.”

” ‘Ank-you.”

When I do get to see this new specialist, I want to be armed with a good data set so we can maximise the efficacy of our first appointment.  But to do that, I had to figure out what kinds of data would be needed.  This in turn meant researching the various types of headaches, migraines, and symptoms.  I got to learn lots of great new words!

If the headache is bilateral (both sides of the head), then it’s a regular tension-type headache.  I’ve had some intractable ones that linger for a couple-three days, despite various medications.

Unilateral headaches (just one side of the head) are the migraine sort.

There are the icepick migraines that feel like someone just stabbed you in the head.  Although intense, they are mercifully brief — just a minute, though there can be several repeats throughout the day.

Migraines can be temporally divided into three stages:  the prodrome or early-warning symptoms, the migraine itself, and the postdromal after-effects.  If I wake up with a migraine, then I don’t have the benefit of prodromal symptoms to alert me to take some medication and stave off the worst effects.  However, one of the benefits to keeping data sheets is the ability to suss out what sorts of symptoms are prodromal, so I can have better self-awareness.

A persistent tension headache can turn into a migraine (ugh).  Eating much wheat also seems to be a trigger for me; a small cooky isn’t bad, but a couple slices of pizza will do me in later (not to mention digestive hoo-hahs as the gluten works through my kishkas).  Barometric pressure drops — especially those that bounce back up from a swiftly-passing storm — are notorious for making my ears and head hurt.

The cognitive and mood factors can be less obviously related to migraine prodrome: brain fog, depressive state, insomnia, or light sensitivity.  You might think these would be pretty obvious, but the problem with chronic pain (from hypermobility+osteoarthritis+TMJ, especially combined with 11-13 hour work days) is that one gets into those viscous circles of pain-sleep problems-depressive states.  Throw in everyday hyperacussis and UV-sensitivity, and sometimes it’s hard to sort out what is which.  “Ain’t we got fun.”

Once I started researching various migraine symptoms, I had a much better means of both identifying and describing the various symptoms I experience.

One thing that quickly became apparent was that like snowflakes, no two migraines were precisely the same.  This is interesting from an objective point of view, but it also means that I have to spend a bit of effort to verbally identify the symptoms I experience during each migraine, and then shortly thereafter note them.  Although a cognitive task that I cannot always perform throughout the entirety of the experience, it does afford me the opportunity to detach part of my consciousness to that objective state, which gives me one step of remove from the intensity of the experience.  (My research background is useful in so many ways.)

An Aura can include visual disturbances such as:
Scintillating scotoma the classic flickering/shimmering/sparkling arc, zig-zag or castle crenelation effect;
Drifting phosphenes phosphenes are “stars” you see if you stand up too quickly or sneeze; phosphenes can also refer to the geometric patterns that happen when you press on your closed eyes;
Diplopia just the fancy word for double vision;
Oscillopsia when objects appear to oscillate, vibrate or bounce;
Photophobia “the light, augh! too bright!”
Allodynia pain from nothing in particular, or something that wouldn’t normally cause pain, “augh the sheet’s touching my arm!”;
Osmophobia “the smells, augh! too overpowering!”
Olfactory hallucinations smelling things that aren’t really there;
Phonophobia when even the clattering of dust particles falling is too loud;
Hyperacussis I startle overmuch at sudden or sharp noises — well, even more so than usual;
Auditory hallucinations hearing things that aren’t there, nor are related to my tinnitus;
Synæsthesia Feeling sounds, and other odd cross-sensory effects;
Paresthesias tingling or numb feeling like “pins and needles”, or like someone is yanking on my kneecaps or tendons;
Vertigo, nausea, vomiting, chills or clamminess;
Ataxia a “lack of order” or bad muscle coordination;
Disarthria / aphasia disarthria is trouble speaking clearly, and aphasia is problems with speaking and understanding, or making sense of reading things.

Once all that is over, there is the postdrome, or “migraine hangover”. I’ve no idea how one compares to a drinking hangover — I’ve never drunk that much! But it is something like having the flu: weakness, generalized muscle aches, laterality confusion (right v left), fine-motor difficulties, exhaustion, lack of appetite, intense thirst, intermittent strabismus (wandering eye), temporary dyslexia / reading comprehension, auditory processing lags, concentration problems, or once in a while, feeling energetic — “wow, I’m no longer in pain!”

Then of course, the was the issue of creating a useful data sheet, one that was both complete and easily used — and this is where my dual backgrounds in behavioral research and typography+layout blend well.

As with any sort of biological data, it is important to note the frequency, intensity and duration.  In addition to those classic factors, there are also the sorts of factors that one more often considers in ecology: the type, season (if any – only a data set of more than a year can determine that), and the extent, in this case, the extent of the disability that results from migraines.

I’m sorted the pain and disablement into three levels:
1 annoying pain, workable
2 moderate pain, reduced work
3 severe pain, incapacitating.

With the diary, I can then sort out the frequency, intensity and duration of the issues. So far I’m relizing that it’s much more of a problem than I had realized. It’s not so much that one gets used to pain, but that one gets used to being in pain, to headaches as a way of life.

Damn, but April’s a long ways off.

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Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

“Smile!”

I went in to get my driver’s license renewed. Part of that ended up getting my name entered correctly into the system; convolutions on my name seem to follow me everywhere! And of course, there’s always the ordeal of smiling for the photograph. This involves a story in two parts.

No one looks good in their identification photos, or at least that’s the impression I get from hearing people’s comments. They complain that the picture “doesn’t look like” them. Sometimes people feel compelled to pull out their new license or employer ID tag or school ID card and show it to me, which leads me to shake my head sympathetically and say something blandly supportive, like, “Yeah, what can you do!”

Truth be told, I can’t really recognise people from their ID pictures. I don’t even think that the pictures look necessarily lousy, aside from obvious annoyances like having a “bad hair day”, crooked clothing, or less-than-steller compositional framing. True, identification photos always have that flat, full-front angle that removes distinctive profiles, and the artificial lighting saps the natural color from most everyone’s skin tones. I’m sure those are some of the reasons why people don’t like their ID photos.

But one part that I’m missing is the, Read the rest of this entry »

Small Comforts

“You know when you have a few good days and you begin to wonder whether the bad days could have possibly been as bad you imagined they were and then you have a few bad days and wonder how on Earth you ever were able to do the things you did on the good days? No? Well, I do.” ~ The Goldfish

It’s a pain. No, it’s many pains.

I’m getting over a migraine, which makes me just generally tired and gives me brief flashes of visual auras, pain twinges, inconsistent light sensitivity, and word retrieval problems when speaking. This rather much overshadows the arthritis business. I’m also trying to get a bunch of errands done and phone calls made prior to packing for a trip, which unto themselves are stressful activities. I also forgot to take my ADHD med this morning, so I’ve been in a what-was-I-going-to-do? fog all day long as well, above and beyond everything else. “Ain’t we got fun.”

But after I tracked down two cats and took them to the vet (putting the suddenly-hexadecimal cat into the carrier is always entertaining — picture here ), I went for my semi-annual tooth cleaning. I have no idea if I’ve had this particular dental hygienist before, having no memory at all for faces not seen daily, but she was nice enough to shut the window blinds for me on account of my migraine “hangover”. I was also due for some dental x-rays (roentgenograms), so the she draped me with the lead apron. Although having the bite-wings stuck inside my mouth is less than fun, I always enjoy the comforting pressure of the lead apron.

In fact, years ago when I realised that a lead apron was such a fabulous deep pressure aide, I got one from a retired dentist. When I stagger to bed with an incipient migraine, I compose myself in the dark room and drape it across my thorax. I’ve also used it on nights when I just can’t seem to settle down because I feel twitchy on the outside. The lead drape is one of several small comforts that I have found useful. Everyone deals with stress in their life, both the eustresses (the good sorts that help “push” us in beneficial ways) and the distresses (the bad sort, which need no further introduction). But we all differ in the things we are stressed by, and how those stresses affect us. My distress-reduction is accomplished by several means. Read the rest of this entry »

Oops. Ouch.

Here’s one of those quandaries: Which is worse, accidenting one’s self frequently, or not responding well to anæsthetic?

It’s not that I react badly to local/topical anæsthetic, just that I don’t react to it much at all. But I’m getting ahead of myself. Which is not unusual because I’m often unsure of where I am in space.

Being chronically uncoördinated is technically known Read the rest of this entry »

System Overload (Error Messages)

CRASH!

Some of us are old enough to remember the Ed Sullivan Show, which was a variety show on television. One guest was a man who would spin plates on sticks. He’d prop a dowel onto a stand, and get a china plate spinning atop of it (the top of the dowel inside the lip around the base of the plate). Then when this one was going, he’d start up another plate, and another one, then have to rush over and give the first plate a fresh spin because it would be getting wobbly, re-spin the second plate, add another plate or two, re-spin the third plate, and so on, until his time was spent rushing back and forth re-spinning all his plates.

Of course what made this act popular was that it wasn’t just a parlor trick; it was a metaphor for all the things we have to juggle in our lives and sometimes cannot. You know what happens when you have too many plates spinning; one is likely to get away from you (crash!) as you devote time to another …

Some days everything runs pretty well. I compensate for various difficulties. I feel smart, converse appropriately, don’t get overly sidetracked, and get things done. No one notices that I am having to work as hard as I really am to “spin all my plates” and keep them in the air.

Other days are bumpy and uneven; I do well at some activities, but less well at others. I can spin all my figurative plates with varying degrees of efficiency, but it is obviously a strain and I don’t try to keep the intensity up all day. I might drop a plate or two, but manage to pick it back up and get it going again.

Then there are the days when my plate-spinning skills suck. I get too overwhelmed by the quantities of novel inputs I am trying to sort out, or the numbers of simultaneous inputs that all require high-level cognitive work, combined with my internal processing glitches. Days like this are not unlike switching from a high-speed cable internet connection on a new computer with a GHz processor, to a low-speed dial-up connection on an old computer with a low-MHz processor. The slow internet connection makes the Web pages load s-l-o-w-l-y frame by frame. Trying to run more than one program at once makes all of them process in an anxious, halting manner. Every now and then an error message pops up, a program will abruptly close, or the entire system will freeze up and the computer has to be force-quit and rebooted.

When my processing gets overloaded, my perceptions of things around me are reduced. Objects are not individually distinct, but can erratically devolve into indistinct patterns of color and lighting. I cannot identify people by my usual gestalts of nonfacial characteristics, and sometimes I don’t even perceive them as people but just as moving objects. Some kinds of visuals, such as high-contrast vertical stripes or flashing things derail my attention completely, leaving me frozen and entranced.

My reading ability gets dyslexic – I interpret a newspaper headline as “Stove Jar Bunk” (instead of “Star Drove Drunk”), and I mix up 2 and 5 or 7 and L. Grading multiple-choice assignments with all those b and d answers is dizzying, especially with so many of our students also being dysgraphic. My own writing ability gets erratic, and I spell things inside out, drop entire words, have to focus on forming individual letters, and at worst writing only works at the level of “autofill” where I’m mostly writing or keyboarding by kinesthetic memory.

Sounds get intermingled, and the audio processing track gets stutters, repeat loops, and blank spots. The tinnitus gets worse, and goes from mild background mosquito-whine in one ear to louder buzzing noise or two-tone noises in both ears. Sometimes when people talk to me I don’t realize they are speaking, or that they are speaking to me, so there’s additional decoding delay. When I talk I am more likely to stutter, drop certain phonemes, substitute some random word, or stop in mid-sentence because I have suddenly lost the rest of the words I was about to say.

The number of texture sensations I feel are reduced to just one or two, but frequently switches from my socks, my glasses, the chair, my shirt, or something in my hand. Sometimes those sensations become magnified, where much of my world becomes filled with the annoyance of socks drooping down my ankles. When I try to focus my attention to one sensory processing channel, then I can’t pay attention to the others. The tics get more pronounced, I shake one hand repeatedly, and my proprioception is off, making me trip or drop things or walk in a somewhat spastic manner.

I’ve heard that outwardly I appear clumsy, stupid, drunken or sick. Random people ask me, “Are you okay?”

It takes so much effort to realise that (1) the noise is people talking (2) the person is talking to Me (3) who this person might be (4) what the words are (5) what the words mean (6) that they are asking a non-rhetorical question that requires some kind of answer (7) trying to self-assess: am I okay? (8) what would “okay” be? (9) does someone else need to do something for me?

Coming up with an answer that is both functional and is bracketed with something close to the appropriate “social noise” (polite fluff) is a bit much to expect from me at this point. It’s hard to think of a suitably informative reply, but of one thing I am certain: please don’t make me go sit in tiny places painted institutional pea-green. I’m not sure where I’ve encountered those before, just that I know it was a not-good situation and I don’t want to go there again.

The best answer is an “I’m okay,” pulled from the mental drop-down menu of stock social phrases. Most people don’t really want to get involved; they just want to be reassured that an ambulance is not required. Even if I’m not making eye contact and my delivery sounds flat, this seems to be an adequate answer. Sometimes I’m mentally stuck on that drop-down menu, and deliver an additional, “Thank you,” or “Excuse me,” but apparently this is okay because the value of social noise currency is in the act of exchanging, not in the specific coin.

Getting too overloaded means I have to shut down for a while, slumping numbly in a chair and rocking without being focused upon anything. Unless of course I get snagged by one of those shiny, glittering or flashing things, such as the glowing blue light on an electronic mechanism, or slips of sunshine flickering through tree leaves. Even so, I’m not entirely “there”, and am probably still rocking a bit.

The trick is noticing when I am at the beginning of getting overwhelmed, of noticing the buzz that’s swamping my nervous system in transmission noise. The problem of course, is that by then I have even less mental processing for self-monitoring to realise what’s going on!  But I’ve figured out that experiencing tingling-numbness, really loud tinnitus, or pronounced difficulty in reading or writing are useful cues that I need to take a good break from whatever I’m doing.

Otherwise my plates wobble and start crashing.

Rush Hour Traffic

No one likes rush hour traffic. But the reason it exists is because thousands of people feel that they have to take the same road at the same time. Then they get upset because they can’t all do it fast.

Rush hour traffic is highly over-rated. So are developmental time-tables.

One of the important points is that a lot of the “developmental disorder” end of things is developmental slowness or unevenness – it takes longer to get certain skills, and they may not necessarily be reached in the same manner as most. Comparing a child with such to the standard developmental timetables may only serve to increase stress at the seeming brokenness.

So many schools are trying to fast-foward children, expecting kindergarten social, cognitive and physical skills from preschoolers, and gradeschool social, cognitive and physical skills from kindergarteners.

Children between the ages of 2 and 6 are integrating a humongous amount of information in a variety of spheres, including receptive and expressive language, physical skills ranging from gross and fine motor to bodily functions, single-interpersonal skills, group interpersonal skills, acquiring subject knowledge in concrete things in their lives, cause-and-effect stuff, abstract stuff like numbers and reading and time (seasons, special events etc), and a bunch of other stuff that’s not even coming to mind right now.

Then we throw in things like developmental variability in sensory realms and proprioception and language processing and …

I couldn’t tie my shoes until I was in 3rd grade. Bike riding was even later. I didn’t know all of my multiplication tables until 8th grade. I required speech therapy in primary school, and that was back in the 60’s when most kids didn’t get anything.

Sometimes I think that too many people turn all these developmental timetables into bare minimums, when in fact they are simply averages, which means that some kids do things sooner, and some kids do things later. Given how uneven our kids are, they think that everything should be as advanced as our kids’ best skills. They also spend too much time evaluating how well children participate in herds, when in fact most toddlers and preschoolers really aren’t so much herd animals yet.

School is not about racing to the finish. Nor is it about everyone taking the same path to get there. Despite what people say.

But people get Terribly Concerned because their children are not learning things at the proscribed rates. They become afraid that their children won’t learn at all, that somehow they will be “stuck” at whatever stage they are in. So there are children who spend 40 hours a week in a variety of programs for speech, for movement, for scholastic tutoring, for mimicking social interaction …

Once upon a time, long ago in a galaxy far, far away … we didn’t have all these “programs” for things. Which is not to say that some kinds of programs might not have been helpful. It would have made 40+ years easier if people had known about my considerable Auditory Processing Disorder difficulties, instead of saying I “wasn’t paying attention” or was lazy or whatever.

But people get Terribly Concerned that their child “doesn’t know how to play”. This boggles the mind – how can a child “not know how to play”? But what people are really meaning is that their child is not playing the way they expect them to, i.e., not the “right way”. It’s pretty sad when children are graded on whether or not they play correctly. Play is a personal exploration of the world, for one’s own learning and delight.

One of the things commonly ascribed to autism is a “lack of imagination”, because autistic children don’t always play with the same toys that neurotypical children do, or don’t engage in make-believe games the same way that neurotypical children do. This is really ironic, because Hans Asperger himself said, “It seems that for success in science and art, a dash of autism is essential.” Hmn … And indeed, you’ll find autistic people in most every sphere of endeavour.

If the child doesn’t show an interest in typical toys, then they are simply not interested in them. Let them be available — they may later, or they may end up using them in different ways than other children. (Toy cars are for lining up, right? <grin>) It may be also that other things not generally considered to be toys will be more interesting to them.

For example most kids of all sorts find a manual eggbeater to be fascinating. But an eggbeater is not considered to be a “toy”. Nor is graph paper or a weight scale or a Latin dictionary or an Army Corps of Engineers building manual for national parks structures, although I found all of these fascinating as a child. I still do, and they gave me background useful for my degree in horticulture — you never know how those particular fascinations can be useful.

You may not see the same style of role-playing activities as more socially-oriented children engage in. Those are called “imaginative” play, and many people assume that a lack of engaging in them is a lack of imagination. Rather, it’s a lack of role-playing, and imagination can take many other forms. I played with dollhouses — but spent hours arranging the furniture, not acting out stories with the dolls themselves. To this day I can remember what the furniture looked like, but not the dolls that were supposed to go with it. I have a superlative mental “CAD” type program in my head for arranging and manipulating elements in space, and if I tell my husband that the sofa is six inches longer than the wall, by gum it is six inches longer than the wall. I can re-arrange stuff and pack more into a dishwasher or suitcase or packing box than anyone else.

Let your children have time to explore their worlds by giving them a wide range of experiences, and letting him take those in, in their own manner. Give them what they need by way of therapies to help him deal with things that make their lives difficult, but please, don’t fill their days with them. Children do develop, and some of them do so on different time tables.

Jump For Joy

So there’s the aspie kid, frustrated about a sophomore English writing assignment, a persuasive essay. It wasn’t coming up with the topic or the supporting details, but rather, figuring out why there needed to be any explanation about how the evidence supported the assertion. It was perfectly obvious! Well, at least it was to the author, and complaints about the explanation being “redundant” resulted in my having to explain, “It’s obvious to you, but you have to explain it to someone else.”

I remember having these slight “mindblindness” issues myself. It’s an inability to construct an imaginary understanding of another’s comprehension based solely upon their reading of your written material, because in any writing, you always can assume that the reader does know some stuff. It’s what you can assume the reader doesn’t know that is the tricky part. To build up that “Theory of Mind” (which really everyone does have, including autistics) you have to be able to build a set of common patterns about what different people know and don’t know, based upon their ages, genders, backgrounds and such. To create that you need a trend, and to create a trend you need multiple sets of data, which arrive from much conversing with people. Spending your lunch periods doing math homework is efficient for reducing homework (and backpack) loads, but certainly reduces the opportunities to socialise. Then again, it also gives one necessary time to de-stress and recharge for the rest of the school day. Everything is choices!

In this situation with the essay, our student doesn’t understand the difference between the data and the analysis (which frankly, some graduate students don’t), or rather, between the analysis and the discussion. “Here’s the opinion,” I explain, “here’s what the evidence is, and here’s why it supports that opinion.”

Hmn … finally aspie kid is getting frustrated with maternal explanations; the fact that I tutor college students in composition isn’t impressive — in this sphere, I’m still just Mom.

So when faced with these kinds of frustrations, there’s that tried-and-true solace: the trampoline.

I’m tickled that for someone who has never been into organised sports, aspie kid has become progressively more coördinated and agile over the years, especially with the not-inconsiderable adolescent growth spurt. In fact, I’m more clumsy than the kid is. This improvement is very reassuring, because during toddlerhood this child accidentally broke a number of things, including a window. I was in fact, amazed that no bones ever got broken.

I think much of that is due to the trampoline. It certainly seems to have improved the vestibular & proprioceptive organisation, meaning the sense of balance, and understanding where the body is in space and the relationships of different body parts. We bought it for fun, but this play equipment has (in retrospect) proven to be rather therapeutic.

Our giant backyard trampoline has gotten plenty of use over the years. During more hyperactive days, this ADHD child was sent to go bounce out excess energy in order to have enough focus for doing homework. Or even for sitting through dinner.

Aspie kid is no longer hyperactive. But the trampoline still gets used just for the sheer joy of bouncing, and for working through assorted mental knots, like this business of the persuasive essay. After the workout, our student returned to finish up the persuasive essay with the required elaborations.

When compared to equally atypical peers, our child’s difficulties have been not nearly as noticeable, most likely due to having had an enabling sort of childhood environment. The trampoline helps with the hyperactivity and coördination. The closed-captioned television (for hard-of-hearing dad) helps with the auditory processing disorder. The household routines are set up to be as ADHD-friendly as possible, lest Mom totally fall apart organisation-wise. This means that various mental quirks aren’t seen as being extremely odd, but rather as things that one simply deals with in stride, because everyone has different needs.

I Miss My Opposable Thumb

Don’t get me wrong — I’ve not really lost my entire thumb to accident. I merely knicked a bit off the tip with a kitchen knife. But unlike a mere cut where the skin just has to close back together, this is a small concavity that takes a bit longer to fill in. Because it’s on the tip of my thumb, it’s prone to all sorts of ongoing abuse that would prolong the healing process. So, I have one of those plastic caps taped to my thumb to protect it. And of course I can’t really use my thumb for much bandaged like this.

So like many other things in my own life I had to develop coping strategies to accommodate this temporary disability. I use my index and middle fingers in a pincer grip for holding small things (hooray for doublejointedness). Shoelaces are really tricky this way, but I’ve always asserted that shoelaces are the work of the devil (I was in 3rd grade before I finally mastered them), so I stick to loafers and sandals whenever possible.

Last night I remarked to hubby that my entire life is composed of coping strategies.

I have coping strategies to deal with the ADHD forgetfulness, distractedness, and hyperactivity. We have a baker’s rack near the front door for backpacks and shoes. My necessary pocket stuff is emptied onto a special dish at bedtime, and reloaded the next morning when dressing. I set my medicine bottle on my computer keyboard. I write notes to myself (and others) using a dry-erase marker on the bathroom mirror, as one ends up in the bathroom on a regular basis, it doesn’t get lost like scraps of paper, and I can be sure of seeing them when getting up the next morning. I turn off the oven before removing the food. I have an index card in my shirt pocket where I keep my To Do list and ideas to pursue. I set my car keys atop whatever object I need to take with me.

I have coping strategies to deal with the Auditory Processing Disorder blips where I can’t understand what someone has said to me, and the resultant overtaxing of my short-term memory that makes recalling verbal instructions and lectures so damn difficult. I watch television with the closed captions (subtitles in English) turned on. I take extensive notes when given verbal instructions. I request emails instead of phone calls, printed meeting agendas, and transcripts.

I always have earplugs on hand to turn down the volume a bit in noisy places because of my hyperacussis, and frequently listen to background music to drown out my tinnitus.

I have coping strategies to deal with my faceblindness. Like other prosopagnosics, I rely on accessory features of posture, gait, mannerisms, voice, hairstyle and location to identify people. I also rely upon name tags and prompts by family members and others. When we’re in crowds, I instruct people to wave at me so I can find them again.

I have coping strategies to deal with my clumsiness (although given the continuous succession of bruises and the number of scars I have, apparently insufficiently adequate ones). For years we did not have a coffee table because I crash into furniture too often. I transfer raw eggs with my hand palm-up to let gravity work for me. I pour liquids with the containers over the sink to make spillage cleanup easier. I keep burn ointment on top of the refrigerator instead of in the bathroom medicine chest because I get burned in the kitchen, not the bathroom. I skid the sole of my foot across the top edge of a staircase to find the first step. I do complex hand-and-foot actions sequentially instead of simultaneously. I wear glasses with metal rather than plastic frames, as they bend instead of break. I wear snug clothing to improve my proprioception so I don’t run into furniture as often.

I have coping strategies to deal with my intermittent reading & writing transpositions. Everything has to be proofread. I block off extraneous numeric data with a piece of blank paper so I don’t pick up the wrong number. If I have to write out calculations for students, I ask them to watch me really closely and let me know if I transpose something. (This makes me more human to them, and also makes them watch me like a hawk, thus paying more attention to the lesson!)

All these coping strategies mean that on good days I may even be over-compensating for some things. Overcompensation is something I sometimes do well. Spelling was one of my worst subjects; as an adult I became a newspaper proofreader. I had a speech impediment and occasional stuttering that required speech therapy; I’ve recorded books on tape and now I do a lot of public speaking and get return invitations. (I also get queries about my “accent” because when I’m tired I tend to over-enunciate, producing a sort of Received Pronunciation effect.) I have ADHD but for several years of college I lived in two cities and did four jobs while taking classes. I have APD but have been a note-taker for other students, albeit in classes where I already knew most of the material. Adler would be proud.

There is however an inherent drawback at being so good at developing coping strategies: because I can more-or-less get by most of the time, people can’t tell that I’m having to work twice as hard to do what I do. So when I’m tired and/or sick or otherwise stressed, I don’t do things as well. To be frank, I do poorly. A lot of my coping abilities lie in the fact that I’ve worked to create enabling environments for myself. Take me out of those (for examples, when on trips, or when starting new jobs), and a lot of my strategies fall apart.

Because these are invisible difficulties and disabilities, people don’t understand why I intermittently fail or falter. They can’t understand why an otherwise apparently smart person suddenly does and says apparently stupid things. This means that sometimes people will decide I’m being lazy or rude, or if they don’t know me they will decide that I’m stupid.

In the long run, the attribution errors can be the most disabling thing of all.