Category Archives: The Stroke

Tell Me Everything You Don’t Remember

TELLMECover

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.

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Filed under The Stroke, Writing

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.

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i can’t hear you

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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.

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into the ether

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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.

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there is no such thing as utter immunity

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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.

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Filed under Abstract Thoughts, The Stroke

the stroke going into macro

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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.

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fading brain

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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.

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