Stupid Irony!

Someone defined poetry as “life condensed”.  Sometimes I think that disability is life magnified.  Today’s lens is Irony:

  • I dropped my reaching tool behind the bed where I … struggled to reach it.
  • Forgot to take my ADHD meds.
  • Was too stiff to pull on my elastics:  the wrap for my elbow, the two pads for my knees, and the fingertip-less gloves.
  • Nearly in too much pain to remove the child-safe cap from the arthritis medicine.
  • Couldn’t see to find the wee screw that holds in the lens to my eyeglasses.
  • (Similarly,  when my ex-husband couldn’t hear his hearing aid squealing.)
  • Couldn’t understand the voice-mail reminding me of a follow-up visit with the audiologist.
  • Being unsure if that noise I heard in the audiologist’s testing booth was one of the test tones, or my tinnitus.
  • Asked a random store clerk to open the box and unpeel a bandage wrapper so I could stop the bleeding of yet another torn cuticle and pay for said bandages.
  • Sat on the grocery floor because I’d forgotten to wear my knee pads that day, and had to stock boxes of aspirin and arthritis meds.
  • When discussing my difficulties with social interactions with a counselor and mentioned that I thought I was missing things, I was unable to tell just what it was that I was not catching!

And so on, and so on.  Feel free to add some of your own!

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Saved by bureaucracy

( A follow-up on my shaky employment status, as described in a previous post, The Catch.)

So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines.  At those visits I also spent time in the audiologist’s booth:  “Huh?  Sorry, I can’t see what you’re saying.”  “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.”  Ha, ha.  Very funny.

(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ?  Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)

And then something wonderful happened:

The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses.  So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and —

SHAZAM!

I was saved by bureaucracy.

(I mean hey, it’s gotta happen sometime, right?)

Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA).  Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.

I cannot be dunned for absences related to bouts of vertigo.

My principal was of course very polite and helpful in the process of explanating this unexpected coverage.  I was asked about accommodations that might be helpful.  Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).

However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s.  Despite my initial relief, my job status still feels as wobbly as my gait some days.  Stay tuned for further developments.

The Catch

I’ve been having intermittent bouts of vertigo (some severe), along with worsening tinnitus and resulting difficulty understanding what people are saying. My GP said I got poor results on the tympanogram, and is sending me to an ENT, whom I see next week.  I’m no longer driving on the highway, and take extra care if I’m carrying my grandson.

Meanwhile, someone at school told the principal that I was “doing the wall thing”, meaning touching the wall to steady myself as I passed down a hallway.  This resulted in being called up for a Official Meeting.  By the time I left, I was feeling queasy and light-headed for entirely different reasons:

  • Being a couple hours late to phone in my absences due to migraine and due to a Emergency Room visit for vertigo, had previously earned me a stern warning for procedural lapses.
  • Going to or staying at work if feeling dizzy is prohibited because an educator with vertigo is a liability.
  • Leaving work 30 minutes early for a doctor’s appointment must be taken as sick time.
  • No “flex time” is allowed for appointments (i.e. leaving a bit early and making up that time by staying later another day).
  • Thirty minutes, half a day or a whole day all count equally as an incident of using a sick day.
  • Taking 19 sick-day events by October due to viruses, migraines, vertigo or doctor appointments is excessive, and any further such absences can result in termination of employment.
  • Which specific number is unmentioned, but up to the Powers That Be in the Human Resources department.
  • Any employee who is feverish with a virus must stay home.

Alas, this is all legal, and there seems to be a large limbo of being disabled by irregularly re-occuring conditions without actually being Disabled enough for some kind of accommodation.

Even if I somehow negotiated with H.R., the interpersonal climate with the school admin is too prickly to stay.  This is a shame, because I have a great relationship with my classroom staff/faculty.

I’m looking for a different job, hopefully something full-time that also pays well enough so I can have just ONE job in my life.  But everything I’ve seen pays fast-food wages, or else is so technically specific that my skills profile is a mis-match.

The free-floating anxiety is just HELL.

The long and short of it

It’s going to be a long day; I can tell already.

Last night I finally got eight hours of sleep, aside from several prolonged coughing fits.  The previous three nights I’d only gotten four hours of sleep.  You’d think the extra rest would make me feel better, but I’m still running short on good sleep because I have this bronchitis or whatever (we’re waiting on the lab results from the nasal swab to see if I have Pertussis, holy shit).

At least I only have to work one job today.  But I’m teaching an evening class and I suspect that by then some of my cognitive functions will be running on Reserve Power.  At least it’s a subject I’ve done several times before, so I can get by with using a lot of verbal scripts.

It’s going to be a long day; I can tell already.  That’s because I’m already running into “System Overload: Error Messages”.

P.S.  I’m going to have a bowl of Mint-Chip ice cream and see if that doesn’t do anything for me, since the efficacy of Häagen Dazs Vanilla Swiss Almond ice cream isn’t up to par. Thanks, Bev!

[now clink on this link for System Overload: Error Messages where post continues]

Hotbed of Apathy

*sniff, sniff*

“You sound sick,” stated my daughter’s fiancé, M.

“I can’t be sick,” I mumbled in protest, and honked into a tissue.

“Redunculus; you’re sniffling.”

“I can’t be sick; it was Mr W’s day to be sick,” I explained.  “He got first dibs on being out sick today …  If all the classroom staff members who were sick stayed home, there wouldn’t be anyone left!”

I’m sure the students wouldn’t have minded having some of their classes cancelled.  But no, we slogged through the day, hour after dreary, mind-numbing, O-PLZ-STFU hour.  It was, I decided, a veritable hotbed of apathy.  The lead teacher was battling a sinus infection, and I was suffering from what felt like temporal phase-shifts.  And my aches ached.  My ears were ringing and making sharp pains and I was having dizzy spots and nausea.  I was cold and then would have a sneezing fit and then be hot, and would have some odd spastic tic and then be cold again.  They cannot invent a vaccine for this shit any day too soon.

It’s worse when you’re feeling crappy and working 60 hours a week. But it seems like every few days I discover yet another person who’s working multiple jobs, the latest being a cashier with two jobs and Lupus.  (Maybe what the economy really needs is for everyone to take a week off just to get some rest already.  All in favor say, “Aye!”)

And then there’s the strange stress nightmares I get before a semester starts, going through an interminable dream about teaching 3rd grade but starting the same day the students do, and having an unworkable U-shaped classroom without a chalkboard or whiteboard, and the women’s bathroom stalls all cost 75 cents in quarters to use, and …

If you, too, are ready for a diversion, our favorite engineers (previous post) have a new video up on Advanced Cat Yodeling.  M just about ROTFL, as he has been Yodeling with his cats for a long time, and favors the Machine Gun Kiss™  approach.

Sleep Bends

Maybe you’ve heard of “diver’s bends”: decompression sickness that affects divers (or fliers), resulting from gas molecules that collect into bubbles in the body, much like the carbonation that results when you pop the top on a container of soda.

Waking up lately has been similar to the bends, albeit not for the same reasons, nor as deadly (I’m not making light of a serious medical issue).  But for whatever reason, many of the symptoms are quite similar:  joint pain, headaches, nausea, dizziness, muscle fatigue, seeing spots, and sometimes numb or tingling fingers.

Not surprisingly, it’s hard to get out of bed.  I lay there, hoping it passes quickly.  Rarely does the dizzy-nauseous aspect does abate after 15-30 minutes, and sometimes the extreme nausea lingers all day and then I’m taking meclizine because the school hallways remind me of an unpleasant trip on the English Channel ferry.  Not only does this make it hard to get to work on time*, but it also makes it difficult to get downstairs and eat some breakfast so I can then take my regular morning meds for pain and such.  (Yes, irony, and the not-so-terribly-humorous sort.)

The last time I had a particularly hideous vertigo attack that landed me in the ER (A&E), my GP later decided it was an effect of the previous day’s migraine.  I don’t know if there’s such a thing as “chronic migraine-related sleep bends”, but I sure as hell wish it would go away, ditto the tinnitus that’s been particularly obnoxious lately.  It’s making it difficult to get to job #1 on weekdays, or temporary job #2 on Saturdays, and by evening I’m so exhausted I don’t know how I’m going to do potential job #3 (for which I’m interviewing on Wednesday).

Maybe I should check back with my GP, so see if there’s anything he can recommend besides, “Have you tried nibbling on some saltines … okay, some gluten-free crackers?”

* My record for morning hygiene, dressing, packing lunch and getting into my car is just 20 minutes, but that only happens if the night before I have parcelled bits of food into wee plastic boxes, and also done up all but the top two shirt buttons (to reduce arthritic fumbles), and tracked down and laid out all of the components for my change of clothes.  For some reason, choosing clothes or lunch food is way too mentally taxing and manually difficult in the morning, compared to something “easy” like driving in traffic.  Don’t ask me why.

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 »

That old social bugaboo. Again. Still.

So, recently I was observed while teaching an evening class, and a couple weeks later had the opportunity to meet and discuss the professor’s observations.  Except for one problem, most everything else can easily be resolved.

I was able to explain how the combination of illness and exhaustion were affecting me, as well as how accessory issues like Auditory Processing Disorder and tinnitus and prosopagnosia meant that I had to either work harder or do some things differently.  I explained how I took notes during the classes of what I wanted to do differently, to keep improving my teaching. I think that overall the discussion went well.

The prof had some really good suggestions, such as repeating questions, or asking students if I had answered their question.  He reminded me not to mutter to myself when looking for something, as it was distracting to the students.

Since the observation, I decided to have the students pick up their returned papers from a pile, instead of trying to pass them out. That had not worked out well.  Due to my faceblindness, I was carrying around my seating chart and asking each person if they were so-and-so before handing them their paper. Students can accept that the first week or two of school, but even though I have mentioned my problem more than once, the concept is really hard for most people to get their brains wrapped around.

Halfway into the semester, I’ve finally sorted people out with regards to my prosopagnosic identification crutches, but I’m still working getting the names attached to their individual gestalts.  The other week I was entering grades and finally realised that there’s a student who is in both of my classes!  That this student is rather generic looking, quiet, and sits in the back of the classroom doesn’t help, faceblindness-wise.

But after the whole review experience had passed beyond the anxiety level into the stage of applying the information positively, I am still sighing over one point.

I thought I had gotten past this. I thought I had it down pat. But apparently, I still need to work on making eye contact.

“Mama said,

‘There’ll be days like this,’

‘There’ll be days like this,’ Mama said.”

The Shirelles, “Mama Said”

Coming down with some virus most likely, as the school nurse says it doesn’t look like strep throat (despite the sore throat that’s making it hard to lecture).  I can deal with that.

Headache, only ’bout a 4 out of 10, not so bad of itself. I can deal with that.

Ditto the tinnitus, which alas, seems to be making it more difficult to understand people, especially those students more than a few feet away from me, which is most of the time — why do the most soft-spoken students sit in the back corner?  The auditory processing glitches don’t help, either; I’m sure some of the students think I’m not paying attention, or am losing my hearing.  At least no one is going around yelling to me in the mistaken impression that volume = clarity.

Five hours sleep.  Definitely need to get to sleep sooner, and I would were it not for the class prep I have to do before and after classes.  Okay, now it’s getting really challenging.  I’m dropping words in the middle of my sentences once or twice an hour, and does that ever make me feel stupid.

I’m hungry because I didn’t eat much due to the sore throat & canker sore.

Two of the pieces of paper I really needed to have with me were not in my binder.  No, I’m sorry, I don’t remember the date of the next exam right off the top of my head.  No, I’m sorry, I haven’t memorized the ID labels to all of the slides (but I can tell you what’s important about the slide).

We were reviewing the results of the first exam.  This is the first college-level science class that many of the students have had, and some of them haven’t had a science class in years.  Bumpy ride.  It’s also the first full exam I have written, and every teacher knows the hidden hazards of writing such.

For some reason I decided to hand the graded exams out, rather than just letting the students pick their own test up.  I’m faceblind, and have not yet memorized the seating chart.  Definite planning error on my part.

My PowerPoint — that delightful gizmo that helps keep the tired, the distracted, the forgetful, the sick, and the first-time teacher from losing track of the game plan — the PowerPoint file on my flashdrive proved to be an older version that did not have the other half of the slides I needed to remind me what I was going to tell the class this evening. That too, of itself I could deal with, although the presentation was not at smooth as I would have liked, and we had to go back a few times and fill in something I had not mentioned earlier.

But all of these things together, oy vey!  I muddled through everything, but did not feel very brilliant or smooth.  I didn’t even have all of the lab equipment fully prepped because I had rushed in right before class.

And then shortly after class started, one of the professors came in to do a surprise Observation of me as a new instructor.

At least I didn’t have my trouser zip left undone, or have a strip of toilet paper (loo roll) stuck to my boot!

Mama said there’ll be days like this …

Backwards Symphonies

“It’s been a long week — I bet you’re ready to decompose.”

I stared at my husband, blinking through the mental fog of too-many-jobs-not-enough-sleep.

“I’m not ready for the compost pile yet,” I replied, trying to figure out what his latest malapropism was meant to be.

“Or whatever the term is,” he added.

My brain finally catches up. “Decompress,” I answered.

What an incredibly long week.  I can’t remember the last time I had one like this, and in my over-busy world that’s saying something.

Wednesday last week I had a pneumonia vaccination, which left my arm so sore I couldn’t take off my jogbra without assistance, nor even get my hand up to head level until the weekend.  Moreover, Read the rest of this entry »

A few updates

The 92nd Edition of the Skeptic’s Circle is up, and The Lay Scientist gives us the latest press conference news as given by the Team Skeptic Manager Martin, from the state-of-the-art Olympic training facility in Beijing!  Prepare to be amazed — but never bamboozled.

The July issue of the Pain-blog Carnival is now up at How to Cope With Pain blog.  Readers share a variety of subjective experiences and treatment information.

Speaking of things painful, I put up a couple of photographs I modified to demonstrate some of the visual disturbances I experience during migraines.  Due to the trigger potential, I put these on a special page.  (The images are described for those with impaired vision.)  Alas, the Kid was laid flat by a migraine today — the preventative meds certainly help reduce the numbers of attacks, but they don’t completely eliminate them.  However, he reports that the new medication is a definite improvement over the old one, wooziness notwithstanding. A quiet “Hooray” for this encouraging news.

And although the timing isn’t quite “news” anymore, it’s not so late for it to be “olds”, so do check out the 42nd Disability Blog Carnival over at Pitt Rehab, where Greg gives us a break from the usual busyness for some summery relaxation at the beach, and plenty of great links.

As for me, I have to blame day-long teacher training class all week for my dearth of posting.  It’s been really good, but so intense — having to sit and focus on attending, listening, and learning for hours on end is hard.  Every day I run an errand right after class, and then come home to crash for a 20-minute catnap for my brain to do some filing before I can even think about cooking dinner.  The fatigue is a good reminder of what it’s like for all our students!

(Now if only the tinnitus would Shut Up.)

P.S.  Time to play ADD hide-and-seek: if you were a $100 calculator left in some random location by a teenager, where would you be?

P.P.S.  We already checked the breadbox.

Pain “All-Sorts”

Damn anthocyanins!

See what a college education does for you? It allows you to cuss using polysyllabic words.

This morning I awoke with an “icepick headache” type migraine as well as stiff arthritic joints. Then as I was pulling my large, soupy bowl of near-boiling oatmeal-with-blueberries from the microwave, I spilt it all over my hand and wrist, the shelf, and of course, the cream-colored carpeting. After running cold water on my hand for a couple minutes (it’s fine, if tender — I’m not wearing my watch for a couple of days), I had to go back and swab up the spill. The purple anthocyanin stains from the dried-then-rehydrated blueberries will be quite the test of my carpet-cleaning spray.

Meanwhile, the physical pain of ice-pick migraine has bugged me off and on all morning. The good news is that although it’s horrible and intense, it lasts no more than a minute. The bad news is that it tends to repeat periodically through the day. Made a point to take some more medication before my exam tonight.

~//~

Glancing through newsbits was less entertaining — there’s a reason why I usually read blogs in the morning and news in the evening. (I do glance over the headlines in the morning, just in case western California decides to crumble into the Pacific or something.)

Oh the conceptual pain … it’s sort of thing that Stephen Kuusisto calls, “the neurological equivalent of a foot cramp”. This is from Time magazine, “Huckabee’s Texas Evolution” (hyperlink is to single-page, text-only version), which describes US Republican presidential candidate Huckabee and his support for intelligent design, and the upcoming Texas State Board of Ed elections (emphasis mine):

Republican Barney Maddox, a urologist and ardent supporter of creationism. … Maddox, who declines media interview requests, has posted his writings on the web at sites like the Institute for Creation Research and has called Charles Darwin’s work “pre-Civil War fairy tales.”

Now there’s some irony as heavy as a falling Acme anvil.

https://i0.wp.com/img186.imageshack.us/img186/4171/anvil1cq2.gif

Sorry — I didn’t realise the clipping was an animation — hit your ESCAPE key to freeze the action.

(Picture description: this is a pop culture reference to Roadrunner cartoons. Wile E. Coyote was always trying to do in the Roadrunner, including dropping an Acme brand anvil on him. In this cartoon clipping, there’s a pile of birdseed in the middle of a road, with a sign stuck into it saying “Free”. The road runs underneath a natural stone arch somewhere in the US desert Southwest, and hanging below the apex of the arch is a heavy iron anvil. Presumably the unseen Coyote has a hold of the rope tied to the anvil, and is waiting for the likewise unseen Roadrunner to come running by. Of course, Coyote never succeeds, as Roadrunner is way to smart for him. Beep-beep! )

~//~

Just to complete this triad of pains for the day, I realised that I was wearing a new turtleneck for the first time. Normally when I get new clothing I remove the sewn-in brand name, size and laundering tags. Clothes-tag irritation is not as much a strict dermal irritation (there’s no rash), but rather is a constant hypersensitivity, a small but chronic sensory pain.

So before I washed this turtleneck I used my seam-ripper to carefully pick out the threads holding the labels at the collar seam. But by this mid-morning I realised that I had missed a tag, a big long one with laundry instructions that was unexpectedly sewn to the seam just below my ribs. Unfortunately, I didn’t have the spare time to sit around partially-disrobed in a toilet stall and employ my Swiss Army Knife scissors to the task of snipping a line of tiny stitches.

You would think that after a little while my brain would habituate to the sensory input and I would forget all about the silly tag. Well, it does, for a few minutes. But then I twist to do something, and I notice the annoyance all over again. Repeatedly, all day long. ARRGH!

~//~

Well, it’s time for me to wrap up my day soon. The icepick headache hasn’t shown up for a while. My wrist is less tender. It was wonderful to yank off the turtleneck and put on my soft, old honeybee pyjamas.

I aced my test this evening. And the last fix-it job I did on the dishwasher seems to have worked — we have machine-cleaned dishes, and I didn’t have to pay someone to come out and fix it, nor “hold vigil” for a repair person who would supposedly arrive “between the hours of eight and four”.

Oh joy, there’s the tinnitus popped back on again. And I’m getting another canker sore in my mouth. Well, can’t win ’em all.

Fishing With the Wrong bAIT

The other day (er, week) I promised to post some thoughts on AIT, so here they are.

There are plenty of treatments offered to cure or improve Auditory Processing Disorder (APD). Auditory processing is not just about hearing. Hearing is the sensory business that the ears do, and the auditory processing is what the brain then does with the signals from the auditory nerves. The ears also have the semicircular canals, which provide us with information about balance — that sense of balance, along with the proprioception of our joints, ligaments, muscles, tendons and bones, give us the sensory information we need for coördination. In auditory processing disorder, the sensory part of hearing often works just fine; it is not a hearing problem, it is an understanding problem. The ears are getting the information and are sending suitable signals; but there are some “tangles” or “speed-bumps” in the interpretation of the signal.

One treatment popularly lauded on Web advertisements is Auditory Integration Training (AIT), which is supposed to also help problems related to tinnitus, hyperacussis (oversensitivity to high-pitched and/or sudden noises, or sound in general), autism, ADD or ADHD. Depending upon the practitioner, AIT may also be sold as effective treatment for dyslexia, stuttering, depression, speech delay, and even head-banging or echolalia. That’s quite a list of highly diverse issues, which immediately sends off mental warning bells.

AIT was developed by Dr Guy Berard, who is also the author of the (out-of-print) book, Hearing Equals Behavior,

“Everything happens as if human behavior were largely conditioned by the manner in which one hears.”

(Hmn, I bet a lot of Deaf people would beg to differ with Dr Berard’s assertion!)

So how is this method supposed to work? Read the rest of this entry »

Quieting the Noisy Silence

A recent news item on the BBC describes current research into treatments for tinnitus. For those of you without this unwelcome companion, tinnitus is a perceived but non-existent whistling, whining, buzzing, whooshing, squealing, or similar noise. It may be intermittent or constant. For many people it is downright annoying, but for some this perceptual problem is debilitating.

There is no cure for tinnitus, despite a plethora of nonsense being hawked on the Web. (Even treatments such as Auditory Integration Therapy don’t actually hold up well under controlled studies.) My tinnitus is a 14-17 kHz whine, like high-pitched piece of electronics or the whining of a particularly shrill radiator. Like other people with tinnitus, I had to learn to get habituated to the sound and try to ignore it, or will frequently mask the annoyance with fans or other forms of “white noise”, or with music.

One of the hidden problems is that the noise can interfere with listening to real sounds, and that because no one else experiences it, they don’t understand how utterly DAMN ANNOYING that constant, freaking unending whistle is! Worse, just when you are most tired and stressed and need rest, it is the most troubling, because there are fewer distractions when you are trying to get to sleep. The fact that the piercing noise is entirely subjective doesn’t help either; no one else thinks that someone should be bothered by something imaginary.

But although the sound is not real, the problems resulting from having a constant squeal either right next to, or inside your head, are quite real.

But for Kate Cook, a busy working mother of two and presenter of the documentary Longing for Silence, the effects of the condition are debilitating.
She has had a high pitched whistle inside her head for 25 years and the impact on her life is huge. It never goes away and when she is tired or stressed the volume swells to unbearable levels.
“After a long day you have got this incredible noise inside you. A whistling, squeaking, almost physical sensation in your ears. That is when you feel really really lonely. And because it is a silent symptom to everyone around you, there is this hopeless feeling of being on my own with it,” says Kate.

The article describes a few trials with magnetic or electrical stimulation, or even a transient relief from lidocaine anæsthetic. As hopeful as these may be, I still want to see data from larger numbers of patients. The testimonials of a few are even less useful here than they are for other kinds of treatment trials, because tinnitus is largely a subjective phenomenon, and thus the potential for placebo effects are greater.

You might well ask, what does it matter if it’s a placebo or real if the problem is gone? Because rarely does any kind of treatment, be it pharmaceutical or surgical, come without associated risks. I want to know that the likely results outweigh the likely risks. Nothing in life is guaranteed, but because I don’t believe in luck or magic, I want information with a level of reliability.

Not only that, any experimental treatment is expensive. I could not afford it, and insurance companies sure aren’t going to spiff for something unless they think it’s worth it. Unfortunately, I suspect that even a proven treatment for an “imaginary” problem would be dismissed by those hard-assed corporations with their eyes on the almight profit margin. Tinnitus is not a medical emergency, it’s just a bloody quality of life issue.

Hell, after all, who needs peace and quiet?

How hard can it be?

A few years ago I had the pleasure of providing the annual Inservice training session for a university’s tutoring department. One of the themes I explored in brief was how tutees, especially those with various learning disabilities, may have processing difficulties. We have to take information in, make sense of it, retrieve information, and then be able to relay information back. Various kinds of learning disabilities interfere with steps in this process, and the interference can happen at more than one step, especially when a person has more than one kind of difficulty. (Learning disabilities and other physiological issues are often co-occurring, technically known by the dreadful-sounding term of “comorbid”.)

The upshot of all this is that any “speed-bumps” or “road-blocks” in the processing will result in slow processing (it takes longer to do things), or uneven processing (some days it’s more difficult to do things, not always for apparent reasons), or intermittent or chronic inabilities to do things (being able to do things on some days or in some hours, but not others, can be more frustrating than never being able to do them).

There are a variety of disabilities out there, but instead of describing how each one can affect a person’s ability to respond in educational efforts, I’m going to describe how processing works in general, and at which steps some disabilities become apparent.

Whenever we interact with the world, there is a whole series of steps that has to happen. Let’s take the subject of, “Answering a question asked of you”. Most people assume that this is really simple, and thus, easy. Hah! Read the rest of this entry »

A Most Dangerous Question

Once Upon A Time…

I had a great counsellor. That sort that gives you unconditional positive regard, and listens to what you’re actually saying (instead of what they’re expecting), and who also asked especially good questions. Some of the questions were of the Zen-master category of counselling, the sort that jog you from your everyday running, smacking palm to forehead and saying, “OH!” or else stopped you short because you had been doing something totally irrational and then had it pointed out to you when you were at a point to heed such. Other questions were more like planting little seeds, things that seemed innocuous at first but that later proved to be much greater things.

This is the story of the little seed question. It was a very dangerous question, not in the hazardous sense, but in the transformational sense. Read the rest of this entry »

Syd

This sucks. It’s one of those problems that has gone from intermittent to nearly-constant. There’s really nothing to be done about it. I ask my doctor every few years, just in case. But no, there is no cure. There’s not even much to do about tinnitus. When at home or in the car, I mask it by playing music. At school, our students are generally noisy enough to drown it out.

My tinnitus is usually a high-pitched squeal, about 14-17 kHz, like a mosquito that whines for long periods, seemingly next to my left ear. The whine gets louder or softer, but rarely goes away. When it does, it returns with a sudden *pop*, as though someone turned on a radio. Once in a great while it’s stereophonic buzzing static in both ears, or even a fluttering sensation like a butterfly stuck on my left ear, but those are pretty rare. I know that I’m not just hearing actual machinery because I’ve heard it when standing surrounded by hectares of prairie, without a single operating machine in sight or earshot.

The good news is that I have no reduction in my general hearing. The problem did make itself known after I’d been working in noisy labs for several months. Well, I thought they were noisy labs. Read the rest of this entry »

Things that bug me

No cheese with this whine, please; I’m out of crackers. It’s HOT — we went from 24°C/75°F weather in the mountains to 40°C/104°F weather back home. It’s humid, too. Weeds grew outrageously in my absence, but I’ve no energy for tackling them when I get home from work. Nor do I have any energy to cook dinner, and no one has any ideas on what they want to eat, either. I need to buy groceries, but don’t know what to get beyond the inevitable milk & toilet paper. The heat saps our appetites. The heat has melted all of my blogging ideas from my brain, and staring at the snippits in my drafts folder doesn’t jog anything.

Boy starts classes tomorrow, and at my school, the students return. I have no idea why it is that 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 »

Less Is More

This is the fourth day in a row I’ve awoken without a cracking TMJ headache, thanks to getting a new bite-block to replace the other one lost.  Sure my joints ache a little and my ears ring more often than not, but I’m not spending hours a day in borderline dizzying-nauseus pain, whee!  Curiously, although more stress means more ticcing, less pain doesn’t necessarily mean less ticcing.  Less pain does means sleeping better, which is a nice sort of positive feedback loop.

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.

Running With the Red Queen

Everyone in life has to compensate in some manner or another, because no one excels at everything. If you are not mechanically inclined, you take your car to a shop to get the oil changed, and you call a plumber to fix leaks or replace worn faucets. If you’re not comfortable with arithmetic calculations, you have a tax specialist do your annual return, and you arrange for automatic payroll deposits and bill payments with your bank. These are ways that ordinary people deal with ordinary difficulties, and no one thinks any less of them. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful.

It is curious that people who have others do everyday things for them because they are rich are envied, whereas people who have others do everyday things for them because they are unable to do them are looked down upon. People with ability sets that are different than the “average” person’s run into problems because they are being “inappropriately incompetent”. Some of those “should be able to” things are related to sex-rôle stereotypes: a man should be able to fix a leaky faucet, a woman should be able to sew her own shirts. Among more traditional or conservative populations, a person is not faulted if they are incompetent at a skill that is reserved for the other gender. However, when someone cannot do something that is expected of everyone, or cannot do it well, or cannot do it consistently, they are then open to derision.

The Austrian psychologist Alfred Adler noted how people compensated and even over-compensated as ways of dealing with perceived incompetence and avoiding feelings of inferiority. Not all “incompetences” really are gross difficulties — they may merely be assigned as such by others around us.

I’ve mentioned before that my life is a mass of compensatory strategies. I compensate for auditory processing problems, and the tinnitus that increases the background noise problem. I compensate for prosopagnosia (difficulties recognising people from their faces). I compensate for all those organisational, time-sense, and executive-functioning issues related to ADHD and Asperger’s (planning, executing tasks including the getting-past-the-inertia stages, self-monitoring). I compensate for the hyperacusis, and my general clumsiness, tics and stuttering, and migraines. Generally speaking I compensate fairly well. So much so that most people don’t realise that I am working much harder to achieve nearly as well. I “pass for normal” most days, so people can’t understand why I’m having problems when I’m ill or stressed or simply trying to compensate for too many things simultaneously.

Adler would probably say that I over-compensate.

I had to go through Driver’s Education class twice to acquire the necessary motor skills. I did eventually learn to drive stick shift (manual transmission) and have even driven in both the UK and US. The day that I parallel-parked in front of my high school to request a transcript to be sent to a college was indeed a threshold moment in my life. (Even the transcript part was a highlight, as assaying higher education was uncertain due to my previous academic difficulties.) My husband once asked me, “What, can’t you drive and talk at the same time?” and I did not feel that it was unreasonable to answer, “No, I can’t.” I cannot drive a stick shift vehicle through city traffic, trying to find a business I had never been to, and talk on a cell phone. (I have Auditory Processing Disorder and he has a severe hearing loss — talking on the phone can be inherently confusing in its own right.)

There are classes when I struggle to keep my attention focused on the instructor, and also to understand what they are saying, especially if the classroom is mechanically noisy, or if the instructor mumbles or talks while facing the whiteboard or doesn’t present information in a clearly-defined format or use supplementary visuals. Because I am very good at being able to distinguish the important material in an educational presentation and record those details in sensible paragraphs, I have been a note-taker for dysgraphic or hearing-impaired students. But I have only been able to do that in those subjects where I was already familiar with most of the information — I could not be a note-taker for others if I was still learning all the vocabulary and concepts myself.

Mathematics presents special difficulties for me because of problems with sequencing, slow working speed, and occasional transpositions. It took me four years to memorise my multiplication tables, and I have flunked a number of tests over the years, and nearly had to take a class over. In university I dropped a course that I was getting D or F grades, to try it again later on to get C, B or A grades, and did that with more than one course. It was slow, difficult work slogging through college algebra, trigonometry, calculus, statistics, physics, and four semesters of chemistry. One of my current jobs is working as a special education paraprofessional. I help in the science classroom, but my main assignment is in the math classroom. The extremely ironic thing is that not only am I helping students with mathematics, but also that I am doing so in the very same school I attended years ago, in the same classrooms where I had once sat flunking math tests. (My first work week was not only difficult from the prosopagnosia-aggravated new-job disorientation, but also from “post-traumatic school disorder” as I had ongoing flashbacks.)

I actually did flunk a semester of secondary English and had to re-take that portion of the course. I have also written a book and hundreds of articles (on a variety of subjects) for magazines and newspapers. I tutor college students in composition classes.

Given these examples, it might sound as though my difficulties were all in the past, and have been made up for by my recent successes. That isn’t quite true. What I have done is learned how to work around some kinds of difficulties. With others I simply have to work harder to puzzle through consciously to figure out those things that most people do easily and without conscious effort. Some days I feel like Alice Through the Looking Glass, running as fast as I can just to stay in place.

The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetence by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! What helped more than those moments of personal glory (exhilarating though they were, despite lacking exciting soundtrack music), has been finding out why I have problems, how those problems manifest in my daily life, and how to work with them. Self-understanding improves self-image because it gives me tools for those ongoing and future difficulties. Self-understanding means that the next time I fail something (not “if” but “when”, because everyone does fail periodically), I will have the necessary cognitive and emotional tools to handle the disappointment. I will be able to handle defeat graciously, because it is a failure of task-specific achievement, not moral failure. Furthermore, I can extend that same grace to others, because we all have such problems, even though the details differ.

Out in our various communities, we need to be able to not only acknowledge that Yes, not everyone can do the same thing, but also destigmatise that fact. One of the tragedies with the current paradigms in the helping professions is the disdain and depersonalisation from “care-givers” to that people who need personal attendant services or other forms of assistance. We can’t all do the same things. Needing someone to change your diaper should be no more stigmatising than needing someone to change the oil in your car. There’s really something sick about people who feel superior those whom they serve — there’s an element of self-loathing transferred from one’s self to one’s job to the client. It is overcompensation of the soul-eating malicious sort. Service to others is about sharing strengths, not about bolstering one’s damaged self-worth at the expense of others’.

We should not have to overwork ourselves to over-compensate just to earn other’s acceptance.

Whining From Another Hysterical Female

Don’t get me wrong — I’ve actually had good results with most of the professionals whom I have seen. It would be rather a fallacy to broadwash a whole bunch of specialists on account of a few fools. But boy, when you run into an fool, it’s usually a doozy!

It’s been a long few years getting various difficulties sorted out and identified. Over a year ago I saw someone who was touted at being an expert on learning disabilities, to investigate ongoing scholastic difficulties and possible auditory processing difficulties.

Well, I saw Dr S. (a PhD, not physician) when I was otherwise free from the bulk of my work and school activities, as at the time I’d been having a number of health problems, including insomnia, migraines, worse tics and stuttering, hyperacusis & tinnitus et cetera.

I brought in with me documentation including previous test results, transcripts, and descriptions of my difficulties. This was because I can often get tangled up and forget stuff when trying to explain things, especially to doctors. (Hey, I’m an organism capable of learning — over time I’ve realised that remembering stuff is a problem, so now I take in a list or hand over a page of notes. My new primary physician does great with this, because in the couple of minutes it takes her to read a few paragraphs, we can fast-forward through a lot of rote questions, without omissions.)

Dr S. had me fill out a couple of online tests, and then had someone else administer some more tests to me. Oddly, one of the tests he gave me was for ADHD, for which a coöperating team of a psychologist and psychiatrist had already evaluated me. In fact, he said I had no ADHD and no real problems, except a little figure-ground discrimination hearing things in noisy environments. He had no recommendations, except that I needed to see a psychiatrist for psychosomative disorder.

Well, hell. Was I bordering on depression? Yes, and I knew that and was working actively against that — half a year of chronic sleep-deprivation and pain will do that to a person. Was I having difficulties with my husband? Yes, my health problems were requiring me to take a semester off school and work, and he was wanting to know “when I was going to be a productive member of society”. I already knew about these things, and had explained to Dr S. that I was working to deal with them. But that wasn’t why I was seeing Dr S. — I was trying to address learning and hearing comprehension problems. I even paid a few hundred dollars out of pocket for all that.

There’s a big problem here, and it’s not mine. Nor am I the only one with it.

The word “psychosomatic” has gotten warped or twisted. It literally acknowledges the interdependency and functionality of brain/mind and body, but now has come to mean that problems are “all in your head”, as in imaginary and/ or self-inflicted.

They used to call women “hysterical” and thought it due to having a uterus that “wandered around the body”. Holy cows. Obviously I’m not hysterical. (Hell, I don’t even have my uterus or ovaries any more, due to cysts and endometriosis.) So now they say that women who have problems have “psychosomative disorders”.

The issues with my husband were not seen as his difficulties in accepting my disabilities, but as evidence of my mental disorder.

The near-depression I was facing was not from months of chronic insomnia and pain, but rather caused by my mental illness.

The documentation I had brought with me to aid the man in his understanding of my problems was not data, but symptoms of my mental illness.

I was seen as “attention-seeking” rather than as solution-seeking.

Shit like that can drive a person nutz.

The good news from all that was that I got a referral to a CAPD specialist who said that Yes, I definitely do have such problems, and could even recommend some concrete ways of dealing with the problem and gave me documentation for such. But it makes me wonder, if Dr S. couldn’t really diagnose such, why did he put me through tests for APD, and tests I didn’t need for ADHD?

Has it ever occurred to clinicians that many of their clients don’t exhibit stress symptoms due to having psychosomative disorders, but rather than having various (unacknowledged) disabilities will make a person stressed?

It’s all ass-backwards. Shit like that can drive a person nutz.

Recess: Fun With Words

 

Recess means we take a break and play. It’s important to do that once in a while.

DID YOU KNOW …
that there’s a German word for “that song stuck in your head”? Ohrwurm. Literally, an Ohrwurm is an earwig insect, and I have no idea how that bit of entomological etymology evolved. (Earwigs really don’t crawl into people’s ears, despite their names – they do happen to be beneficial predators of insect pests in greenhouses and orchards). I’ll be polite and refrain from mentioning which songs get stuck in my head – they’re usually the really obnoxious pop-music sort.

An Ohrwurm could also be That Word Stuck In Your Head. A lot of us have run into this perseverative phenomenon. You don’t have to be autistic or have OCD or Tourette’s, although it helps.

Repeating a word over and over is a called palilalia, which in an exquisite twist of cosmic irony, is a great word to repeat or play with as well: pali-lali-lali-lali-lalia! One of my favorite words to repeat over and over is “smock”. Say it several times quickly and it becomes quite silly sounding: smocksmocksmocksmocksmocksmocksmocksmock
Repeating that word very many times also tends to turn your lips to limp rubber, so be careful.

Smock is odd for being on my list. Usually the really good stim words have several syllables: Fescennine, balderdash, interlocutor, reticulated, knee breaches or isoflavinoid. I can play around with the syllable stresses on i-so-fla-vi-noid for a goodly number of blocks of rush-hour traffic driving. “Knee breaches” seems anomalous, but for reasons unknown odd clothing names will suction themselves to my consciousness. A couple of months ago, “dickey” was very sticky. (That’s a false blouse front, an absurd article if ever there was one.) This spring past, “galoshes” sloshed repeatedly around my cranium. The inside of my head can be a noisy place, tinnitus notwithstanding.

Instead of, or addition to engaging an autistic stim, you could have a Tourette’s phonic tic if you go blurting out some random word for no damn good reason at all. Although dramatically used in the media, it’s actually rather rare for Touretters to have coprolalia, where one unintentionally says taboo or cuss words. In real life, most of us really mean to when we say those words.

Speaking of stimming, one really has to wonder about chanting mantras …

Lexilalia is when you repeat words aloud after reading them. I run into this with scientific terms and names, many of which have such wonderfully theatrical sounds, like arcane incantations. (Turn on your mental Roll-of-Thunder and Great-Echoing-Chamber sound effects here.) My favorites are:

Cumulonimbus!

Paradichlorobenzene!

Chrysanthemum leucanthemum!

Gosh, isn’t that fun?

The first is a cloud form, the second refers to a common ingredient in mothballs, and the latter is the garden daisy. Horticultural pedants will note that the taxonomists (bless their wicked hearts) have renamed the daisy as Leucanthemum superbum, which isn’t quite as much fun, although I had a horticulture professor who instead of saying su-PER-bum pronounced the species as SUUP-er-bum.

For a while I would burst into uncontrollable laughter at one of my daughter’s Spanish vocabulary words, bufanda (boo-FAHN-da), which means “scarf”. My daughter then had a penchant for spontaneously hollering out the word just to watch me break into giggles. To her dismay and my relief I eventually became desensitised. I think.

Maybe.

(Special thanks to MOM-NOS for reminding me about this crazy topic.)

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