Tell Me Everything You Don’t Remember

Just dropping in, in case any of my readers are still checking on this space.

Happy to announce that my memoir, which details my stroke and recovery, will be out February 14, 2017 from Ecco / Harper Collins

And it’s available for pre-order!

Details can be had on my main blog.

7 years ago

Seven years ago on December 31, 2006, I had a stroke.

And I published an essay about the experience recently.

I’m glad I chronicled the experience on this blog, because the information was helpful to me as I wrote the essay; so much is still inaccessible to me, even years later.

Mostly, I’m grateful to all the friendships I forged while blogging my stroke. And I did literally blog my stroke, from the first moments onward.

I don’t blog here anymore, but the stroke archives are here for you and for me. Thank you for reading.

i can’t hear you

I rarely talk about my stroke anymore, I am so determined to put it behind me. But occasionally, I’ll be reminded that I’m not exactly the same person I once was, and it takes me a little while to absorb that fact. Sure, we’re not the same person we were just 24 hours ago, because of all the things that happen to us in a day and all those things change us in tiny ways…but when you are changed by illness, especially at a younger age, there’s a sense that your life was…disrupted, that these changes don’t come about by normal process. Of course, illness is a part of life, but there’s an anger/discouragement attached to that…disruption.

I’ve been back to 99% with a few palpable differences for about a year now. A couple differences: I now like beer (I used to hate it), I have huge empathy with people who have learning disabilities, especially those who don’t have very visible/obvious disabilities.

Also–the stroke damaged my verbal/auditory short term memory the most. I had quite a few tests measuring brain functionality in the months following the stroke, and they all indicated an almost 100% loss of verbal learning. Over time, much of my brain function returned (the things I missed most and were glad to see back: being able to HAVE a short term memory..and my coping skills, so that I wouldn’t break down and cry or fly into a rage at every insult or setback). Apparently, the thalamus helps with coping mechanisms.

But these days, my verbal short term memory is still very nearly absent. I am not an auditory learner. I took a test alongside my students trying to figure out if we’re 1) auditory learners, 2) visual learners, or 3) kinesthetic learners. Many of the students came out in some sort of combination, with no one single learning style dominating. But when we shared our scores, everyone was surprised: I had nearly zero auditory learning capability. What I had suspected was confirmed.

That means–if you introduce yourself to me, and I don’t see your name written down (or quickly figure out a visual mneumonic device like “Robert is wearing a red scarf. R for Robert. R for Red. Robert. Robert. Robert. RED SCARF!….what was his name? Red scarf?”), it is nearly impossible for me to remember you. This was painfully obvious to me at a literary reading the other night when the other writers and I introduced ourselves to each other in a noisy room. I had to ask them several times what their names were, and still struggled. (The next day, when our group picture was published on the web, with our names written down underneath, I learned their names immediately–precisely because it was all visually enabled learning).

Now, some of you may think this is completely normal, and it may still fall within normal range–but for me, this is a CHANGE from who I used to be. I used to remember names like a wizard. (Now that I teach, I take the student roster and read it over and over again and over and over again so that I can memorize student names within 2-3 classes. It’s important to know people’s names).

At the reading, I stuck to the two other writers who were the kindest to me. I have learned that memory can also go through the emotional center/avenue of the brain–even in the day after my stroke when I was most addled, I remembered the name of my wonderful neurologist, and I couldn’t figure out why I remembered him and no one else. Two years later, my thoughtful primary care physician told me that I probably remembered him because he was kind, and his name was processed by the emotional center of the brain, bypassing normal avenues. Ahhh–and so to this day, if you are kind to me, I will probably remember your name even in a crowded room where your name isn’t written down.

Afterwards, a few Stegner Fellows introduced themselves. I asked for their names over and over–I still didn’t remember. Alas, there is no picture of them on the web with their names written underneath, so their names are now lost to me.

I have always favored one on one interaction over group interaction, but these days I avoid group interaction because it reminds me of the ways in which I struggle.

This deficit has helped me as a teacher, because I try to engage all learning styles: I will write things on the board, read what I’ve put on the board, I will pass out handouts, and then read what’s on the handout. I will put students in small groups, and have them act out exercises. When there’s class discussion, I’ll write key words on the board. After small groups, students will write their answers up on the board. I try to incorporate auditory, visual, and kinesthetic learning styles in my classroom, and at the same time, tell my students that many other teachers will just lecture and expect them to take notes (and thus I teach them note taking skills). I understand what it’s like when a teacher makes you learn in a way that is impossible to you.

When the school year began, I enrolled in a workshop to learn about all the district’s teaching software. The instructor sat us in front of computers, gave us handouts, and then said, “Do NOT turn on the computers. Do NOT touch the computers! Don’t open the handouts! Just LISTEN TO ME.”

Oh.My.G*d. I wanted to scream. None of what he said was going into my brain. I wanted to take notes, because instinctively, that was a way to visualize what he was saying, but he chided me for writing on the handout that was not to be touched. I put down my pen and gave him a dirty look. I wanted to walk out of the room. I suddenly empathized with students who have behavioral problems, I was so frustrated with the situation and my own helplessness. I was furious. I sighed.

I raised my hand and asked, “I am not an auditory learner. Can you please put something up on the screen? Can I open the handout?”

He said no. I was so mad, I disregarded him from that moment on. I tuned out.

Acceptance. It’s hard. Friends tell me this loss of mental ability/memory is just old age–and it very well could be (is 36 old?), and many times, I do shrug it off. I’m grateful to be in the place I’m in now–to be able to write, to just be myself again, to experience life and all its details. But occasionally, like when I’m at a party and I can’t remember people’s names, and I feel like I’m coming off like an absent minded dork for not remembering when everyone else can…I’m reminded of who I am now.

into the ether

I am so distraught. I am feeling alarmed, angry, down on myself, depressed, hopeless, and frantic. I have been reminded, once again, that I am not at 100%, and perhaps will NEVER be my old self again. Everytime I think the stroke is behind me, I am reminded that it is not BEHIND me, it is a PART of me. That the black dead spot in my brain will never regrow itself.

I slept all weekend–out of 48 hours, I think I spent almost 30 hours sleeping. This is unusual for me.  I couldn’t get enough sleep. I would wake up, wander a bit, maybe garden and then feel very exhausted and sleepy by noon. Then I would sleep until dinnertime. And eat, maybe watch a movie (I watched Vicky Cristina Barcelona this weekend–I loved it). And then go back to bed. It was a very mysterious thing and it reminded me of the early days of my stroke recovery when I would require at least 15-18 hours of sleep each day/night (depending on how you looked at it–because at 15 hours of sleep per 24 hour period, I’d be sleeping night and day).

But now, not so mysterious. I clearly needed the rest. My brain needed that rest. My brain clearly bonked and hit its limit by the weekend.

Because–because! I misplaced a folder full of papers that I CANNOT FIND. It is for my community college job, and the folder includes one doc that another teacher entrusted to me, to scan and copy for others. It was her ONLY copy. I am so freaked out and upset. My husband walked me through the entire Friday afternoon, step by step and I COULD NOT REMEMBER.

Had I brought the folder home? I *think* so, but I can’t remember. Where was it on my desk before I thought I picked it up? What did I do with my backpack and purse and folder once I got home? I DON’T REMEMBER. I don’t remember any details from Friday late afternoon and evening and night. It is a BLANK. Like someone came and erased the whole blue folder from my mind, ala Eternal Sunshine of the Spotless Mind.  It’s as if my brain overloaded by Friday afternoon and it just shut down, much like an electrical blackout.

And no one accepts when I say, “I never used to be like this before the stroke!”  I know myself.  I was NOT like this before the stroke.  I didn’t used to forget things IN THIS KIND OF WAY.  Not in the whole “black hole never existed” kind of way.

Now I feel totally fucked up. Did I even bring that folder home? If I did bring it home, did someone tidy up behind me? I don’t know. I DON’T REMEMBER. I am going out of my mind–frantic, angry, panicked. Combined with feeling hopeless about my ultimate prognosis. I am worthless, I can’t even remember where I put a folder and I let someone else down. I want to scream.

I will never be the same again.  Fuuuck.

there is no such thing as utter immunity

The flu shot served me well this season, protecting me from the flu for almost the entire duration of the flu season. I’m the kind of person who gets sick with a fever every month or two throughout the winter–but I have been gloriously sick-free.

Until this weekend. Bleah, I am sick. In bed. With fever.

Every time I try to get inspired to write, I feel a weight and cloud settle over my body–a fog so thick that the Muse can’t find her way to me.

But at least–being physically sick distracts me from my black internal mood.

Just for fun…I thought I would look back into my archives and see what happened on this date in years previous?

2 years ago, on March 1, 2007: I felt an earthquake.

2 years ago, on March 2, 2007: I celebrated the 2 month mark of my stroke recovery, and pondered the role of friendships in the process of healing. I’d also returned from a trip to Miami.

Last year, on March 2, 2007: I wondered if the MFA was worth it.

I am now struck by how much I traveled while recovering from my stroke–to be “sick and in recovery” and yet be physically ambling about! I was on blood thinners and my short term memory and other mental abilities were still impaired but I made the decision to not cut my life short and see as much of the world as possible.

It also dovetailed into the fact that I could not be left alone by myself (when you have severe memory issues, you forget to EAT) and by the fact that my husband was traveling a whole bunch for business reasons–so we decided to make the best of it. I remember telling myself that I might not remember the trips later but that somehow the experiences would make it into my psyche and I would somehow be enriched and the better for it.

And even though it seemed weird to others and weird to me now, I don’t regret having done all that traveling while sick, having to be led through the airport and getting so exhausted so easily that I slept the bulk of the time while traveling. It didn’t matter. I was engaged with life, and I was putting myself out there.

My doctors were a bit surprised but also pleased–they encouraged me to push myself. The more I pushed myself they said, the better off I’d be.

Now. Why don’t I have that spirit in me today, when all healed? Sick now, sick then. But way different.

the stroke going into macro

It’s only now that enough time has passed for me to even get anywhere enough distance to view the event of my stroke and my recovery on any sort of macro level. I really still can’t see the experience in its entirety, not within the context of my life and me as a person.

It has just been way too in my face, like standing one foot away from somebody–you feel intimacy, you can smell them, you can touch them, you can see the pores on their face, but you can’t get a sense of their entire body, you don’t know how the parts all fit together viewed from afar, you can’t separate yourself.

I’ve understood bits and parts of it as they relate to who I am today. The micro-things like my relationships and such.

But as a whole–it’s just starting to come into focus, I’m just finally getting enough distance. And that’s an interesting experience as well. The stroke is behind me. My recovery is by most definitions, complete. And now–how has it changed me? Because we must posit without debate, it HAS changed me both physically and psychically. There is a black dead spot in my brain and it will not go away, the neurons have fired new paths around the dead spot. And in the process of forging these new pathways, I have found new ways to think and process the world and my experiences within it. Emotionally, I’m changed because it was a life changing experience–it made me grow up, gave me new knowledge, it made me feel less permanent in this world, it gave me a window into my own brain.

For a few months, really, I was an infant, as infants also have underdeveloped thalamuses (or thalamii). I had a left thalamic stroke–the thalamus is the hub of the brain, and the hub towards the left brain was heavily damaged. Which left me with my right brain–a side of the brain that is emotional, intuitive, empathetic, and very present tense. The left side of my brain–a side of the brain that is organizational, logical, past and future oriented (ie., experiences and planning go forward) was damaged. The left thalamus itself has lots of functions–like retrieving memories (thus my short term memory problems) and self-soothing (thus my inability to self soothe).

I was living wholly in the present tense and that was just spectacular, like an infant–I was at peace. The world was beautiful. You’d think I’d be freaked out about how fucked my brain was, but I wasn’t aware of all that until a few months later when I healed enough to realize the deficit.

In the interim, my brain was quiet. I mean QUIET. You know how you can never shut OFF your brain–you know how even in the mellowest of moments, your brain is always humming and chattering about what to make for dinner, how you’ll make dinner, what ingredients you might have in your pantry, and oh remember how mom used to make chicken and wait did you clean the kitchen? and did you pay your bills? what if the water shuts off if you didn’t pay the bill? and wait back to chicken…? That chatter was OFF. It was quiet. So peaceful. I couldn’t remember and I couldn’t plan, and I didn’t have any worries.

People pay a shitload of money and spend a lot of time to try to “empty their mind” and get to that level of zen.

But it also sucked. I couldn’t even cook or bake, because I’d start mixing something in the mixer, walk away because I wanted to check email and then come back half an hour later and wonder, “Why the HELL is the mixer on?!” That was the end of my cooking for a few months until my short term memory healed enough.

I could blog–because I was just writing stuff down, not knitting together a narrative. Blogging/journaling is a present-tense activity. But I could not order off a menu. There was no way I could make a choice–I think I made it a habit to order hamburgers for awhile (and I’m not a big hamburger lover).

I was completely dependent on others of course. But I was at total peace–and this window into the present tense, living 100% in the present moment was spectacular and life changing. That I had this ability to broach such nirvana and that it EXISTED was amazing. I mean, there are a few things I miss from that period of my life, and living in the present moment (and only the present moment) in total peace is something I miss.

Other differences–I used to HATE beer, and now I LIKE beer. I still can’t remember most details in my life 2-3 months prior and 2-3 months after my stroke. There are conversations I’ve had with friends that I CANNOT RECALL, no matter how much they remind me. And who knows what else–but if it happened between Octoberish 2006 and Marchish 2007, I probably don’t remember, unless I wrote it down. I find that I remember things that I once wrote down because my visual short term memory was in a lot better shape than my verbal short term memory.

I’m still getting to know my new self. I’m very much the same person, but every once in awhile, I discover something new about myself (like the fact that I now like beer).

And now–why is it SO HARD for me to write an essay about my stroke? I’m guessing it’s because I still don’t have enough distance (it took me 10 years after my depression and nervous breakdown to write about IT)…I’ve been working on an essay about my stroke for awhile now, at first not knowing how to sort out this gargantuan experience into 10-15 pages. And then after a time passed, I gained more understanding and came up with a structure.

it’s still not done, because I myself have not finished processing the experience. I think it will take some more time.

fading brain

Enough time has passed such that I am unsure as to what memory deficits of mine I ought to attribute to the stroke…or to just…aging.

I know that my brain used to be a lot sharper 2 years ago, prior to the stroke.  I used to remember names and faces, and license plates, and I could balance a checkbook.  Now not so much–I am constantly ashamed of how I forget people’s names as I run into the same people over and over again at things like birthday parties and weddings.  Friends of friends that I don’t interact with on a regular basis, but still!  And I still can’t balance a checkbook.

When I’m tired, I can’t keep track of my own calendar either–I only have a *feeling* I’ve got something going on next Saturday night when you ask me if I’m available (inevitably that feeling is very true once I check).  I have gotten into the habit of never committing to social engagements without consulting my calendar.

Or I won’t remember a substantial conversation we had in late 2006 or early 2007. (I don’t remember a lot of stuff two months prior and two months following the stroke). It’s embarrassing, for both parties. If you know why that might be, then it’s all rehashed…and if you don’t know I had a stroke, well…I either have to stay silent and apologize hoping you won’t think I’m terribly arrogant and aloof, or I explain about my stroke and then that becomes the topic of the evening. Believe me, I like being the center of attention at times, but right now I’m in the awkward stage of wanting to put it all past me. And I’m not sure if you all want to hear about it.

Day to day no outstanding issues…but these little things crop up over and over again and remind me of that little black and dead spot in my thalamus.  It is dead forever.

I got a new primary care physician this week–I got to talk about my stroke in detail. It was strange rehashing it, and seeing it from a bit of distance, finally. My doctor knows I”m a writer and she asked, “Have you written about it?”

Only on my blog. I’ve got an essay-in-progress about it right now. Not easy to write.

“Well it’s understandable,” she said, adding that I might only just be getting enough distance from the experience to start really thinking about it.

I talk about my stroke anecdotally in social situations. I’m asked, “Were you angry about it?” Not really. My brain was so screwed up that I don’t think I got depressed or frustrated or angry for a few months. I was just–numb and confused and so damaged that I couldn’t even remember what life USED to be. I was just–bewildered, walking in a foggy state of mind, wondering, wondering, wondering but never really being able to process. The way I like to describe it is that all day long, I’d feel like I was in that specific state of mind when one has JUST awakened, before becoming fully conscious.

Well. The 2nd anniversary of my stroke approaches. New Year’s Eve, which never seems like it will ever feel the same again. Last year, I was preoccupied by my MFA graduation and the following transition..and this year I finally…feel like I’m looking back and processing.

I’m so confused by the entire experience. It is a part of me. I have had the great privilege and gift of learning tremendous life lessons from the stroke. And there are more lessons to learn.

landmarks

10pm.  Husband fell asleep at 8pm.  I’m wide awake.

I’m not only wide awake, but I feel alert.  Feeling alert at nighttime has become a very foreign feeling for me since the stroke, something that has forced me to become a strict morning writer.  Even if I am physically energized at night, my brain is utterly exhausted by dinnertime.  I can only do complex thinking and idea generation in the mornings.  But I feel different tonight!

Was it my friend’s visit last week?  I made good on my vow to giggle for two days straight.  We had a hilarious time, two days of elation–an elation that sort of reminds me of cocaine binges (I know, it’s kind of a bad comparison)…like when you totally deplete a month’s worth of endorphins in a fifteen minute high.  It was like THAT.  Nonstop laughter and giddiness and joy.

(I mean, not that I would KNOW what a cocaine high feels like…!)

I wondered at one point, why my husband was not joining us at the table for conversation–but then I realized how SCARY we must have been to a lone, introverted man: two cackling, giggling, nonstop talking, inside-joking, hyper women.  Kind of an exclusive club.

And I was baaad.  I left stuff out on the kitchen counters to spoil, I left other things in disarray, I got a speeding ticket!  (Because we were laughing our asses off in the car and I didn’t notice I was going 85 mph through a KNOWN speedtrap in Marin). I call myself “baaad” with a smile on my face. Sorry! (with a smile on my face).

I was exhausted for days after she left, thinking, “Oh. She’s gone.” I had residual giggles and when you giggle by yourself, it makes the room feel a LOT emptier. No one thought I was hilarious anymore!

And then when the exhaustion seemed endless, “Shouldn’t I have my energy back by now? Oh crap, this is when it becomes obvious to me that I had a stroke somewhere in my past.”  I slept until noon for a couple days, fell asleep at 8pm a couple of nights, dragged myself to work, had to chug caffeinated coffee to survive. For about a week.

But now?  I feel this renewed energy, I feel buoyed!  I feel ideas chugging in my head.  I guess I took 2 steps backward with my energy…then 3 steps forward.  I hope I hope I hope…?

We did joke about that–what if after we hang out, we each get a burst of writing?  It’s happened before to us–we hang out, we’re TOTALLY unproductive while together…then afterwards: jetfueled creative writing power.

I’m trying my hand at night-time writing.  If I can get some writing done tonight, what a landmark!  I haven’t been able to write at night in nearly TWO years.

I love my friend!

p.s. Happy Autumn!!!!!

heightened sense of smell

I went to my SECOND yoga class last night. It was more difficult than my first class–the instructor was more demanding, the class more crowded, the poses focused on core muscles (the weakest point in my body). I was trembling, I felt my body STRETCHING!

But I still loved it. There is something about yoga that is NON-competitive and it really just makes me focus on myself and my capabilities in that moment. One of the gifts of my stroke (yes, there are gifts) is having been forced to live in the present tense–quite a relief from my normal self. My normal self spends 80% of its time fretting and worrying about the FUTURE. The FUTURE looms LARGE in my mind.

The stroke gave me a bit of a cure from that, robbing me of my short term memory and the ability to juggle things in my head, retain them…in short, the stroke robbed me of the tools/ingredients for worry. I could ONLY focus on the moment and enjoy that moment, for in half an hour, it would dissolve into the recesses in my mind, lost, like the fading of a picture.

And so it goes with yoga. I’m still not 110% in love with it yet–it takes an effort to get my butt to class, but once I’m there, I’m liking it a lot. And afterwards, I feel a great sense of peace.

The after effects of yoga are quite notable. I feel more flexible already, I feel the hint of improved posture. And this week? I have an incredible HEIGHTENED SENSE OF SMELL. I can smell EVERYTHING!

For better and for worse–this morning I was at the Chinese consulate and waiting in line outside, I was nauseated by the smell of cigarette smoke. I tried very hard to keep reading my New Yorker, but I just could not ignore the overwhelming SMELL. And then when we were let inside and we took our places in the seats, our numbered tags in hand, I was overwhelmed by the SMELL of PEOPLE. The smell of people breathing through their mouths, the smell of people who hadn’t showered, the smell of moth balls! It was incredible–and a bit unexpected.

I mean, I always look at my dogs, just reveling in the scents of the world. Sometimes, I’ve envied them their acute sense of smell, they seem to take such intense pleasure out of it, sticking their noses out the car window, sniffing their food and trembling with joy! That.is.not.what.I.experienced this morning.

Then later, I accompanied a friend to lunch–I didn’t eat because the place was not kosher for passover, but I did take pleasure in being out in the sunshine–but oh man. The place SMELLED. Like a kazillion kinds of smoky food. The cacophony of smells was dissonant. I had to step outside. My friend wasn’t bothered by it at all–but how could he NOT have smelled all of that?

Oh, and I immediately picked up a cough last night after yoga. A bit of phlegmy cough. I thought perhaps that was because of yoga.

But I think the cough and phlegm might be–the flu? Argh. But it’s nearly May!

energy blahs

I am constantly tired, once again. I am not sure why. But recently I made the decision to limit myself to one social activity a day because the whole several-activities-a-day regimen I have had the last few months is wearing me down to a nub. And I have got to get myself home earlier from work and go to bed earlier, like by 9pm. Is it because I’m doing more meetings via phone? I am not sure why I am so drained. I am going out of my mind with exhaustion!

Today I met up with a friend that I met via our blogs–we made the transition to “irl!” It was awesome–she brought her newborn son and we cooed over him, chomped on some good barbecue, and sat in the shade, feeling the breeze tickle our skin. It was an incredibly pleasant lunch and it was good to meet her.

But I felt so shameful telling a mother of a newborn, “I am so tired!” Like, I had to totally stop myself from bitching about my exhaustion.

Meanwhile, I have to conserve some energy and direct it to my novel.

Oh! And after years of consideration, years of listening to friends urging me to investigate yoga, and months of pontification–I am going to my very first yoga class on Saturday with my very good friend! I even bought a yoga mat today. How’s THAT for real intention?

doing too much

I think I did too much today. I don’t regret meeting up, separately but in back to back “appointments,” two friends. But now I’m a little puddle of mush and i just want to nap the rest of the day. These are the days when I’m reminded that I’m no longer the same person I was before the stroke.

But no. I want to go to Koreanish’s reading at USF! But I am not sure how I’m going to do it. And I think I have another obligation that’s about to pop up in the same timeframe. It’s already clear to me that I’m going to get NO WRITING done today. Maybe I’ll take a nap and try to rejuvenate.

another city, more sleep

In Vegas! But don’t be too jealous. My life’s been work, sleep, work, sleep, work. This afternoon was our only afternoon off, and what did we do? We slept (just as we did in London).

In the spare moments, I’ve done my fair share of obsessing–for instance, obsessing about all my stories out for submission. Some of them have been out for about three months (does that mean I’m a contender? Or not). Some of the litmags, like Sycamore Review are in the homestretch of decision-making, and some are just plain slow. Ugh–the hope is killing me!!!! I hate that I’m hoping.

Oh, and there’s always web browsing…

Poets and Writers has a “tools for writers” page, with lists of grants, awards, litmags, and such. But I think duotrope has a more comprehensive list of litmags.

And a friend of mine sent me this link to a terrific video, “When a Brain Scientist Suffers a Stroke.” I mean, not terrific about the brain scientist, Jill Bolte Taylor, having had a stroke. But she is a wonderful speaker and her description of her stroke is just tip-top and on point. Her stroke is both eerily similar and different from my stroke, but the sense of disembodiment and “weirdness” is all there. If you want to know what a stroke is like, and learn a little about the human brain, check the video out. It, and she, are entrancing.

Anyway, I’m tired. So exhausted. My grammar sucks (it’s the first thing to go when I’m tired. I’d say it’s a post-stroke thing for me, but I’ve always sucked at grammar and it gets worse when I’m tired), so excuse any errors above.

And yes–we were in Vegas last year (for the same conference, at the same exact hotel) when we were struck with the horrid news. This week has had some very odd echoes for us. But we doggedly got through it. Now it’s time to decompress.