i stumbled on a kosability diary some months ago and was astonished at the raw relevance in those pain-filled words. its candor and clear assumption that dkos is a safe enough place to disclose the losses and struggles of disability gave me hope that ‘online community’ may not be an oxymoron after all.
i’ve lurked on the great orange satan for at least 10 years but it’s just been the past few since i’ve begun, slowly, to comment. i’ve been even slower to engage in what i am beginning to realize is one of dkos’ biggest assets, the groups. i would like to change that. here’s a start, with my crazy story of disability.
in 2002, i took an accidental blow between the eyes and leaked cerebrospinal fluid out my nose for several days. other than the gorgeous raccoon face and the bruising at the back of my neck, i thought i was fine until a nurse friend saw me and insisted she take me in for an mri, NOW. nothing showed up on the scan but they told me that i may still have repercussions later. me? nah. i thought i was made out of titanium.
in 2003, i was due for a three-month sabbatical over the summer. our family was thrilled; our 2 kids, 14 and nearly 10, were to travel with me. dad and spouse, sir os, would join us for some downtime at the end.
about 6 weeks before all this good stuff was to begin, i took a morning off work to attend a special event at our 10-year-old’s school. i headed out the door and a very odd sensation swept over me. i must have turned back because i came back to consciousness crumpled in our open doorway.
if you are interested in bizarre health stories, follow me below the orange passed-out patient.
i had no idea what had happened. a couple of days later, i passed out again while i was on the phone at work. then, again, on the phone with a friend. at that point, sir os insisted on taking me to the er. nothing seemed out of order although the er doc set me up with a cardiologist.
the cardiologist seemed very dubious about me. i am a small, soft-spoken, social but somewhat reserved person….that is, on my outside.
inside, i felt every bit as big, as smart, qualified, and capable in my areas of expertise as sir os, who is nearly a foot taller than i and who is routinely taken seriously by other adults. of course, i didn’t have that nice soft deep voice or a beard, but still.
up until then, in my adult life i'd generally felt taken seriously by the peers and people from whom i wanted respect despite my size and gender. this guy, though, wouldn’t engage with me, meet my eyes, or answer my questions using anything but 1 or 2 syllable words as if speaking to a child.
‘maybe he’s just more introverted than i,’ i thought.
i thought that i must have not presented myself well. so i made a point of using words with several syllables and not holding back in asking questions, trying to get him to engage.
he wouldn't. he didn’t. after running a few perfunctory tests, none of which turned up anything, he abruptly cancelled the remaining scheduled tests.
his diagnosis was a negative: because i was ‘female and under 50, it’s not cardiac.’ (yet heart disease is the number 2 killer for women in that age bracket, number 1 for all age female groups put together.)
‘so, what is it?’ was my obvious response. he finally met my eyes, his face a complete mask.
‘probably emotional,’ he said.
i nearly fell out of my chair. i’ve had ptsd my whole life; i know what depression and anxiety feel like and i knew that this was qualitatively different.
‘what about basilar migraine?’ i asked. i had spent hours on the internet looking for possible answers. ‘what about seizures?’
‘you can see a neurologist if you like,’ he said and walked out.
i already had a neurologist as i also have migraines. i went to see her. she looked thoroughly puzzled as i described my symptoms.
‘you just pass out? she asked. ‘people with you don’t report any spasms, gumming, weird sounds? no loss of bowel or bladder control?’
‘no, i just get a creepy feeling with the compelling sense i need to get into a safe position immediately. then I'm out. my kids say i turn kind of gray and look dead. a few minutes later i pink up and rouse but am absolutely flattened for the rest of the day. i’ve never been tired like this and i have tons of things to do right now….i know i’m stressed. but, i’m positive that it’s not just stress. i’ve always thrived on pressure.’
‘well, it might be a rare form of seizure…’ she said dubiously. she did decide to do a trial of an anti-seizure med, titrating me up to a functional dose of lamictal. that took at least a month. fortunately, it didn’t work.
on my 49th birthday i had 3 episodes, the most ever in one day. i thought i was dying; turns out i easily could have.
sir os was home that time and saw it happen; he was shocked as he had discounted the kids’ description a bit. apparently i did look dead and he insisted on taking me to the er again. when the doc came in, he shook sir os’s hand, ignored my outstretched hand and walked all the way around the bed to pat poor little me on the shoulder.
‘this doesn’t look good,’ i murmured to sir os. it wasn’t.
the doc looked at my blood work and ekg results; both were normal. he patted me again and said he had a prescription for me, that i take it easy for a few days and he escaped through the curtains before either of us could ask a question.
the prescription was an anti-anxiety med. good thing i was outside the hospital when we figured that out or i would have used the last of my strength to remove his head…and i come from a long line of pacifists. i was livid.
‘well, you do look kind of pathetic,’ my loving spouse said, trying to add some levity. it didn’t work.
instead of going anywhere that summer, i laid on the couch, too exhausted even to read much of the time. i went through a bizarre out-of-body loop each time i passed out; each time i felt the aura preceding the event i thought, ‘this might be the one that takes me away.’
finally, after titrating up to a functional dose of lamictal and going up another notch or two as well, my neurologist said, ‘you should be responding by now if it is a seizure disorder. what worries me is that if we’re missing a cardiac cause, it will kill you.’
she sent me back to the cardiologist asking him to put me in a holter monitor for several weeks.
he reluctantly did, as stone-faced as ever. i had an episode just as i was falling asleep on a friday night so had to wait till monday morning to call it in. his office called back immediately; ‘you need to come in right away.’
‘well,’ i said, ‘my license has been pulled; i’ll have to wait and have my husband drive me over at lunch. can’t you tell me over the phone what you’ve found?’
no, they couldn’t. the doctor himself needed to see me. fine, then; we’ll come at lunch.
when we walked in the door, the doc met us, dramatically unfurling a long strip of paper, my cardiac monitor printout. he pointed to an impressive flat spot in the middle of the jiggly line.
‘you flatlined for 23 seconds!’ he crowed, as if proud for discovering this. ‘you have sinus node dysfunction! a diagnostic pause is 3 seconds and you had 23!! you are lucky to be here!’
his deadpan face was so transformed i wasn’t sure it was the same guy or i may have said a fervent ‘lucky, yes, but no thanks to you!’
so, i was scheduled for a pacemaker implant several days later. i actually had it sooner as someone canceled out of their surgery when they found it was to be on a friday the 13th…good luck for me. i had 2 more episodes during those 2 days of waiting and while i felt completely calm now that i finally knew what was going on, my previously stalwart spouse suddenly got very anxious, an interesting reversal.
‘the pacer will fix you,’ the doc assured me. ‘you’ll be back to normal strength and energy in a matter of weeks.’
this was not the case.
i had about 1/4 as much energy as i’d had the rest of my adult life. i could no longer hike or work out. when i tried, i would end up so sick and weak that i couldn’t function for the next couple of days.
i had been thriving in a job where i routinely worked 55 to 65 hours a week and loved it; i had to wrench my hours back to 40-45, let go of a chunk of my portfolio and most community involvements. even doing much less work, keeping up with the bare bones of my job was now a struggle.
and, more worrying, i still was having these weird episodes. i didn’t completely lose consciousness but had the same aura, same intense need to hunker down into a safe position quickly before i would become unable to speak or move, even blink…a horrible-feeling total paralysis. it only lasted for a couple of minutes but then i would be just wiped out for several hours and sometimes several days.
i kept hassling my docs about this. ‘you look really good on paper,’ they kept saying, as test after test checked out fine. i started hearing those ‘menopausal female’ murmurs again: tired, depressed, emotional, anxious, overwhelmed, maybe her job is too challenging, hypochondriac…
i finally avoided doctors as much as possible, although my family doc was great; i don’t think i would have pulled through without her care and support.
then the pacer troubles began: broken leads, a perforation. i won’t go into that as this is getting entirely too long; i’ll just say that i’m on my 3rd pacer in 11 years, again with some extremely close calls because docs were assuming i was a hysterical horse when i really was a zebra. (i actually was told to my face that i was a horse, not a zebra! i thoroughly hate that med school canard; zebras, unlike unicorns, truly exist and must be considered when making a diagnosis…or you will likely lose the zebras.)
so, 7 years into all this stuff i was still having these weird episodes. i was also aware that strange things were happening to my cognition. after an episode, i would be unable to think in words. if i was writing, or trying to speak in more than phrases, forget it; not possible. recovery took longer and longer and as writing and speaking were a lot of what i did, this was seriously alarming.
sequencing also was a struggle. i couldn’t remember the order of landmarks or streets or give other people reliable directions to our house. i got lost driving home several times, 5 miles, on well-marked city streets where we'd lived for nearly 10 years.
a spreadsheet—anything with numbers—was a mystery. i became more and more ADD. fortunately, i had an excellent administrative assistant and she saved my butt as detail management, never my strong suit, became hopeless.
the fatigue never went away. i slowly realized that working full time until i was 80 like my parents had, as i'd always assumed i would, was not going to be an option. on my days off i was completely crashed, trying desperately to bank enough strength to make it through the next 5 days.
and, damn, i still looked really good on paper.
the final straw was driving. i’d gotten my license back with the first pacemaker (because that had fixed me, after all) and every year i’d drive up to see my mum, a 3500 miles round trip. flying wasn’t a good option as she lived so far from the nearest international airport.
besides, i liked the drive in my well-trained little 40-miles-per-gallon honda and it offered several days of blissful contemplative solitude.
however, i returned from one of those trips and promptly had one of the worst episodes i’d had since the pacer was implanted. it was preceded by a unusually short aura and while my surroundings didn't go totally black i was in a very, very dim place. i realized that there was no way i could have safely pulled off the interstate before i would have been in that creepy state of paralysis, completely helpless to handle the honda.
i went back to my family doc who had stuck by me all those years, trying to figure out what this was.
‘go to mayo clinic,’ she said. ‘it’s time. you aren’t getting what you need in boise; we’ve run through all the specialists i can send you to here.’
so, i did. the electrophysiologist i saw first sent me over to a neurologist. i hadn’t even finished describing my symptoms when he said, ’ictal syncope.’ this is a very rare seizure disorder that slows or stops the heart.
unfortunately, the first drug he prescribed, tegretol, nearly killed me; i am allergic to it and the lining of my mouth peeled out like a snakeskin repeatedly. disgusting.
no wonder, though, that my boise docs couldn’t diagnose me accurately; none of them had ever heard of ictal syncope….so, their easy solution was to make it my own bloody fault for being a hysterical female who could thus be discounted.
i felt this discounting from two female docs as well as a whole raft of men; fortunately not from my primary care doc or my first neurologist. those two women believed me when i said there was something really wrong, and they gave me enough hope to keep trying to find answers. it wasn’t their fault that the specialists they sent me to were blinded by sexist stereotypes.
when i returned to boise with this diagnosis i went back to my heart doc, theoretically one of the best electrophysiologists in town at that time—and the guy who had told me i was a horse, not a zebra.
he made an inane joke when he came into the examining room. i had no words at that point and just thrust the mayo clinic paperwork at him. his goofy i’m-so-cute-with-the-little-ladies smile fell off his cheeks in chunks as he scanned it, and when he looked up, he was finally, finally real with me.
i simply had to ask, ‘so, tell me, dr. blank, how could i have presented myself so that you and my other boise docs would have taken me seriously 7 years ago?’
he had the grace to be quiet for a long time. finally, he looked up and said softly, ‘i don’t know. i don’t think you could have done anything differently to help make us see you differently.’
hmmm. really.
i couldn’t find the grace at that moment to think of anything kind or necessary to say, so i kept my mouth shut lest i lose it.
7 years of uncontrolled left temporal lobe seizures has caused brain damage that makes it hard to even recognize myself. my brain works—when and if it works—very differently than it did.
up until the seizures began, i’d always felt that i had all the energy, the brain power, and the focused curiosity and interest to do or to become whatever i wanted. this is no longer the case; i’ve lost over 60 points in my working memory IQ score. 60 points! i am mentally disabled. can't begin to tell you how hard it is to type that.
i struggle with ADD; i can’t work on a schedule as i never know when i will have the energy or focus to perform. i dither about sorting things, even laundry; my executive function in general sucks. making a phone call is hard as i can’t easily figure out how to order my thoughts clearly under that pressure.
i feel as though i have about a dime's worth of energy to spend each day and when it is gone, i’m done. if there is an evening event i need to attend, i save that dime all day, avoiding interaction and spending as much time alone as i can. if i don’t, i have nothing left to offer.
i still can’t quite believe that so much of me is just—gone. i keep feeling around my new edges, like one’s tongue compulsively feels the gaping hole when a tooth is newly lost.
there is one bright hopeful spot. when we moved to tanzania 2 1/2 years ago, we attended an intensive swahili language school for 8 weeks. i wondered if i was delusional to think i could succeed in that course, but was determined to give it my very best shot, thinking it would either make or break me. at that point, even speaking english was slow with painful gaps as i struggled to find words.
my seizure locus is close to the broca’s area in my left temporal lobe; this is a major speech center in the brain. after drinking from that fire hose of a class (up to 100 new vocabulary words every day), my facility with language has largely returned.
this is particularly true with writing where there is much less pressure to find words quickly, although speaking is also far easier than it was. swahili isn’t sticking as i’d like, but thanks be to god/dess to have english back! whew.
i’ve put myself in other challenging situations to increase brain resilience and have had some resounding and embarrassing failures. yet, i can’t or won’t stop trying; i would have to give up hope that there may yet be other successes in rebuilding.
there may still be more issues to confront. this week i had a muscle biopsy, 2 1-inch-long pencil-thick chunks taken out of my thigh. i’ve had increasing trouble with my muscles, joints and balance. the muscle doc just ruled out ms and some other possibilities…but he thinks i may have a channelopathy (either hypo-kalemic or hyper-kalemic periodic paralysis) which would be the precursor to the seizure disorder…which is the precursor to the sinus node dysfunction…. which would mean that the whack on the head didn’t begin this trajectory after all.
life is crazy, isn’t it?
thanks so much to any of you who made it through this looong post!