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Sunday, November 4, 2012

So Much Silence, So Much Shouting

In the interests of both not being silent- a group interested in lighting up the White House purple in November like the Breast Cancer associations get it lit up pink in October was talking yesterday about a question they received: "How does epilepsy kill?" The first way is silence... I'm trying to put it all together.

I started having migraines at 8. Since I tended to squint as well, they thought glasses might help. At this date, one photograph exists of me wearing glasses. At 14, I started having some strange spells, EEGs were begun, nothing really heard from....we're still battling. I know that glues have changed in the years since.
I still squint after a particularly bad episode or migraine... or I tend to use one eye and shut the other.

Among other things I try to have a sense of humor about it. In June, I had a 2 day EEG that was not only the umpteenth test (I have lost count) but went badly and gave only artifacts--- which were somewhat useful but unfortunately, the 14lb monster machine (built while I was in high school, according to the manufacturer's label) went dead before the end. I was wired up one day, and using the useful tips I acquired,
1)Invest in zip-up or button up shirts. These may need to be low-cut, as leads will be attached to chest. I bought a few zip up summer-weight yoga shirts.
2)Understand bathing will be from neck down for two days, in summer heat conditions. Invest in the "Certain Dri" deodorant you put on at night that keeps you dry through anything and is activated in sleep. Even the troubled sleep of attempting to find sleep while spooning the portable EEG machine and laying on wires, glue and gauze.
3)A large cap will do you well if you need to go forage for food, on the way to the doctor, or to cover up the messy, gluey hair you are left with afterwards.

These are the longer ones...the shorter ones, in office, are lovely, and I can sleep through them, provided they're not flashing a strobe at me, or asking me to hyperventilate.

I went to see a beautician who has a daughter with similar issues...she was kind and non-judgmental, and got me human-looking again.

I texted one photo, the night before the wraps and wires came off, with the caption, "I'm a mummy.." as I was working on keeping my sense of humor...as weird as it was.

This one was the day of, on the way out. I wore the same cap, purposefully too large, to acquire dinner. To the odd looks I got, with the gauze and tape and some wires visible, (apparently, the gauze and tape were what was caught... ) I simply said, "You should see the other guy."
Yes, I did have some bruising. I can't remember why. The Polaroid app makes it look even yellower.

And, no, unlike my joke, I really didn't put mascara on that day. My apologies... it's not Maybelline, but I do tend to emphasize them on non-test days. (VANITY!) But I'd sacrifice the dark lashes for my father's blond brows. The cap and shirt have not been touched since.  This is why I'm subtly going purple for November... and why I am lending my voice.

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