tastebuds

I’ve written before about my curiosity on how this stroke has and will change me and the lessons I will learn from this entire experience. The reality is that I am physically changed–there is a dead spot in my brain. Of course I’m recuperating and healing and finding new paths around that oxygen starved part of my thalamus, but I can’t help but think about how I will never get that specific part of my brain back.

Between trying to survive my busy days and staving off boredom, I try to make a lot of observations about myself and this whole process. I’m investingating what’s changed, and it’s interesting to note what taxes me and what invigorates me.

You know about my visit to Best Buy–it sent my brain in weird overdrive. Not very surprising, actually, because that sort of stimulation has consistently led to disaster. In fact, that kind of situation was what led me to the emergency room after a rambling post on how I was feeling.

Ugh–am I making sense?
I went to the emergency room after a trip to the grocery store. I searched on my site for a rundown of what finally got me to go to the emergency room to get checked out, and I couldn’t find a post about it. Maybe it’s there, and my brain is so burnt tonight I can’t find it. Anyway, at the risk of boring you twice, I’ll brief you on what led me to the emergency room two days after my stroke.

It was a trip to the grocery store.

1 month

Today was the 1 month anniversary of my stroke. I read what I wrote that day, and it’s a weird touching post. At the time I thought what I’d written made sense, but now I see it barely makes sense at times.

A friend of mine read it today, and I remarked, “I must have thought that if I kept writing I’d be normal again.”

the brain is smoking

My brain is sending out death knells–every sound is loud and brash and every thought slippery. A thought is in my head for a second before it skitters away.

Today was a hard day.

These days, a hard day is really obvious. For instance, I don’t remember the thought that made me start writing here. It’s one of those thoughts that have gone out into the atmosphere, lost. Like so many thoughts.

highs and lows

What a day–and it isn’t anywhere near over yet. This is a day of highs that made me feel like I was completely back and in a better form, and lows that made me feel like the dirt you see above…and now I’ve come home, hoping for the first time since my stroke that a long boring stretch of day will finally come visit. This is some of what I did today:

• Went to campus to run long overdue errands. Filled out a request to get a refund for my tuition payment, went to go pick up a graded paper from last semester…and DRATS: I forgot library books to return. (They are long overdue).
• Went to my fitness guru to say hello at his dojo (and met up with a buddy there)! I decided I was ready to say hi again.
• Returned to campus with my (long overdue library books) and returned them, and ran into some MFA peers.

Simple, huh?

NOPE. And in hindsight, I chastise myself for trying to take on all these scenarios in the course of a day. It should have been either campus or my fitness guru, not both. For all of them (wonderful and terrible) taxed me to an incredible extent such that I sit here now, praying to zombie out. I’ve got a bag of Pirate’s Booty cheese puffs and a silly movie that I care about but don’t care that much about, queued up on TiVO.

These days it seems like I’m normal until I’m not. As soon as I think I’m normal or almost fully recovered, something comes out of the blue to remind me, “You have a long way to go.” Damn.

A Free Day

I have an entire day void of plans ahead of me–it is an unexpected blank. For many people this is quite a thrill. For me, it’s a dilemma–for I am the queen of boredom these days, and try to book 1-2 activities a day (either meeting a friend and/or an errand to run). Deciding things on spur of the moment is not a strength of mine either and so I sit here a bit perplexed and overwhelmed at the giant shadow of a day before me.

What do I do? What will I do for the next few hours? What do I feel like doing? What will I need to do? I am not sure–these days I don’t even pick what food I eat (despite my previous tendency to be VERY demanding of meal choices–my husband is in heaven as he solely picks and chooses meals for the first time in years).

The entire day is a blank page, and that is quite intimidating. I don’t know how to explain it, but that’s the way it is. Just to give you a picture of the situation–it’s after noon, I’m in my pajamas, on the couch “watching” (because I’m not really watching due to my lack of multi-tasking capabilities) James Bond on the television with the dogs, and I have not yet brushed my teeth.  Yes, it’s an ugly scene!

I know I’ve got to get myself out of the house.

I already made a call to my mother. I told my parents about this site by email the other day, so that they can keep up with my progress here–apparently, it is causing my father a great amount of concern! I didn’t mean that to be the outcome, I really thought that this page might be a source of peace to them–their daughter is writing, thinking, and pushing herself to recuperate. Sure, I’ve got short term memory problems, and I can’t write fiction yet, and reading fiction is a task, but how lucky am I to do this much? But then again, we are all impatient people and the reality is that it’s been less than a month since my stroke.

I am, in fact, making remarkable progress. And I am doing a remarkable job hiding my deficits from the world in day to day contact–perhaps it is here in my writing that I reveal all. It never dawned on me that I am such a natural at covering up my weaknesses even to my own parents but it seems I do.

This is how important my writing is to me–and I’m discovering more life lessons as I navigate this stroke and regain much of my cognitive abilities. The first few days, my life was a numb blank–my husband kids that I was quite cooperative! But now I’m regaining my feisty self, and fighting to learn from all of this. Who else suffers a stroke at the age of 33? Not many people, and so I have the chance to learn remarkable things from this–all the more so because I am so lucky to have not been felled.

These days, I live “in the now,” because I have a hard time remembering and not enough energy to invest in the future. It’s a remarkable feat, one which I have largely ignored my entire life. My sense of “now” is expanding–from the fifteen minute span of my first few days (I couldn’t really remember fifteen minutes previous to me, and I couldn’t plan more than fifteen minutes ahead) to a greater span of time. But it is a delicious lesson and I hope to keep this investment in the “now” as I heal.

And my writing–yes, how incredibly important it is to me.

In one ear, out the other…

The deficit in my brain after the stroke? Short term memory. (Thank you thalamus!) The first couple days after my stroke, my mind was like a sieve–I could barely remember what doctors had told me five minutes after they’d left the room. “What did they say they think I have?” I’d ask my husband.

And for the tenth time he’d stifle a sigh and say, “Vas-cu-li-tis. They think you have vasculitis.”

“Oh, okay,” I would say, content, as the word and information faded. Ten minutes later, I’d forgotten what they thought I’d had. For some reason, when they said I’d had a stroke a couple days into my hospital stay, THAT really stuck in my brain. “Oh, I had a stroke! But honey? What did they think I had before they found out I had a stroke?”

For the twentieth time he’d stifle a sigh and say, “Vas-cu-li-tis. They thought you had vasculitis.”

My biggest deficit due to the stroke, is verbal short term memory. I score below average in this particular area of brain function.

That means, if you tell me a story, I will probably not remember much of it afterwards. That means if you tell me a list of things I need to do, I will probably not remember that list at all. That means music is just background music. That means books on tape are impossible. That means I’m really glad I’m not in school this semester because so much of classroom instruction is verbal (and involves short term memory).

That means that things literally go in one ear and out the other. It was hell in the hospital trying to remember what everyone was TELLING ME. That is, until one of the therapists told me to start writing stuff down in my notebook. So these days, I am constantly jotting down notes and obsessively (okay, more obsessively) taking picture of things, because my visual short term memory is a bit better than my verbal short term capacity. That means if I SEE something, there is a better chance I’ll remember these short term things than if I HEAR it.

Plus uh, if it’s written down, I can just look at whatever I wrote and “remember” it again.

My husband tells me I wasn’t really very good at verbal short term to begin with, he claims it was my weakest brain function. That’s true–I’d say it was really hard for me to remember what people had told me, and maybe that’s why it’s hard for me to figure out song lyrics. Or ahem, maybe I’m just not a good listener (probably the most accurate assessment) and nothing was wrong with my verbal short term memory).

But I’d like to think I remembered stuff a little longer than what is now about an hour or so.

Best Buy F’d me up!

Folks, I went to Best Buy this afternoon to try and buy some DVDs (movies, and television shows as so many of you suggested) to relieve my post-stroke boredom. What did I run into? Total chaos.

Then I realized I was totally overwhelmed by all the writing on all of the spines of all the movies they had on all of the shelves. It was sensory overload–before I knew it, the din of all the people there, the loudspeakers, the stereos all became this huge rushing sound. The end result? I was unable to focus at all. I was unable to make any sort of decision. (I feel edgy right now, just remembering the whole scene).

I tried to overcome this difficulty, and grandly browsed up and down the DVD aisles, but the titles of all the DVDs stayed one big blur of words.

In the end, I walked out of there empty handed.

I’ve been trying to regain my equilibrium since.

For now, I will fantasize about the trips I have planned for a couple months out. Mrmmm.

A Black Notebook

Not too long ago, but what seems ages ago, I made a decision to start a diary in shorthand gah stroke burp wrong word longhand. I searched far and wide for my favorite notebook, a moleskine. Not too long ago, but what seems ages ago, I started writing in this moleskine–things I could not post in non-anonymous public, but still needed to write down. It was an “overflow” writing center.

By “not too long ago, but what seems ages ago,” I mean a month ago, right before I had my stroke. In hindsight, this decision was incredibly momentous and timely–just a few days after starting a written diary, I had a stroke.

This written diary has now become my lifeline and link to sanity. It has a huge role in my healing. I write in it everyday–grateful for its hidden, underground nature. Before my stroke, I wrote things I did not feel comfortable writing about here. After my stroke, I took advantage of the anonymity of this journal and wrote despite my handicaps, despite the hardship, in incomplete sentences, in bullet points. There is no audience for a journal, there are only the words. It is really pure, sometimes rough, sometimes the words are gems.

I wrote in it while in the hospital, and it contains thoughts and experiences I don’t remember very well: the hospital, my confusion in the hospital, people’s names! It contains things like test results, and reminders to myself, and little factoids I have to remember, and questions I need to remember to ask my doctors. It contains my darkest moments, and my sense of victory. I jot in it while parked after an appointment, overwhelmed with feeling. I jot in it while at lunch with a friend, my mind flashing with a fleeting thought. I write in at the end of the day in bed, unfurling my thoughts until my mind is a flat lake.

It doubles as my “memory book,” something therapists urge stroke victims to take up, a journal to jot down reminders and thoughts and memos.

Thank goodness for this black notebook.

a burst of hope

Above is a model of a brain, viewed in my neurologist’s office. In the center of the brain is the thalamus–that’s what got hit during my stroke. The thalamus is associated with crucial tasks like memory and intuition; simultaneously, it’s sort of a hub and connected to other parts of the brain. Yet, its central position provides advantages to healing. That is, because it is centrally located, alternate brain paths are easily forged…and of course, lead to healing. That’s what’s happening in my head these days: the brain is finding new routes and roads.

Today, after lunch with Susan, I went to my neurologist for an appointment. I fully expected to be depressed, much as I was depressed after my initial visit to speech therapy last week. But no. I was strangely inspired by my visit, and I felt the long way I’d come in a very short time.

The doctor had seen me from my initial days in the hospital, and I watched his every move to gauge my progress–not just his words but his facial expression and reactions to me. He had not seen me since my discharge. He wrote notes down when I said I had not been able to write creatively just yet, and how limited I was in my reading of fiction work. He seemed concerned about that. He seemed non-reactive to my current cognitive state, as if he expected this level of healing. He did not seem so surprised by my progress, and told me in a matter of fact tone the nature of my stroke and its location. I had to apologize to him–he probably told all this to me before in the hospital, but I didn’t remember much of my hospital stay.

I found out today that I am lucky.

I was and am very lucky.

I could have been felled by this stroke, but somehow, emerged with what I think is nearly the best possible scenario. “It was a fluke,” said the doctor. A small PFO (hole) in my heart. A small clot. Straight into my brain, deep into the cortex, right at the thalamus. And yet, here I am, able to blog, at least, and live, and well enough to hide the stroke from most people. I’ll make a complete and full recovery, eventually.

I feel strange to consider myself lucky, but I think that’s what I am. And I often wonder, with all these new paths forged in my brain, if I will be different; I am coming to the conclusion that yes, I am changed, but not because of those paths.

Most of my life these days is “in the moment.” I just can’t hold my thoughts sometimes, and I’m thinking of all the rewards from this situation. Of all the ways I am “lucky.”

My friend Rose told me that I would learn some great lessons in this illness (she told me some other great and wise things, too). I’m trying to open my mind widely, trying to gulp the lessons up, or at least letting them in. Living in the moment is one of them. It’s hard for me to remember things–during the course of a conversation, thoughts spring into my mind and it’s hard for me to hold these thoughts as my companion talks before me. Because it takes me so much energy to hold the thoughts AND listen to my friend, I find myself letting these thoughts slip. Are they that important? No. I’ll just take it all by the moment.

If I think a thought is important enough, I’ll take out a notebook and write it down so that I’ll remember. But most of the passing thoughts? I let them pass.

from the couch

Okay, I’ve become a couch potato these days–my doctor has forbade me to exercise and I cannot read…so there’s the television.  I can’t even work at work that often (3 hours a week is my limitation)–gah, I am boring myself.  Unbelievable.

I must say–there is a HELL of a lot of “reality tv” these days, and it is beginning to show.  Where are the “real” TV shows, you know the ones that require writing and acting and scripts?  Right now, “Lost” is on hiatus–and “Grey’s Anatomy,” “House,” and “Desperate Housewives” are only a few days of the week.  WHERE are the comedies?  Bleah.  This couch potato says “television sucks.”

Then again, I have started watching “Janice Dickinson Modeling Agency” and my brain is slowly acclimating.

Help!  Please Stroke G*ds, bring back my ability to read books and write fiction soon!

excuse me, have to mention this!

Short post, coming through!  Excuse me, pardon me…

Every once in awhile, I go through my dashboard on wordpress and look at all the search terms that bring people to this page.  The following search terms caught my eye and got me to nearly burst into laughter (I’m at home alone, it’s weird to laugh when you’re alone, people):

 mfa writing bland

‘nuf said, no?

friendships and illness and healing

This is an important post, and one that I have been waiting to write until I was well enough to articulate. Not that I’m all that articulate now, but the feelings are welling up in me and I just need to put them out now, despite my dis/inabilities.

This post is about friendships and illness and healing (pretty obvious, given the title)–and in particular, I have to note that though there will be people who read this in regard to their own friendships, it really does revolve around my own hangups and unique personality. I have a hangup about friendships and intimacy. My tendency is to wall myself off, because I have been hurt by so many “friends”; I spend a lot of my time finding ways to protect myself. These days, given my recent stroke, I just don’ t have the energy to figure out how to protect myself…except to isolate myself.

My friendships are both surprising and disappointing me these days. I blogged in a recent meme that my husband is my best friend–ironically, I blogged that while suffering my stroke (who knew that stroke doesn’t have to affect the body and that it can take such a weird form?). And these days, he has more than lived up to his status as my best friend. He took time off from work to be with me, he still works very short days at work, and he protects me from expending myself. I am so grateful for his presence in my life.

I have received flowers from numerous people. They have been remarkable–who knew flowers could be so therapeutic? There are still a few bouquets alive in the house, still cheering me up with their silent beauty. On days that I feel like shit (yes, I have good days and VERY bad days), it’s nice to look up at the flowers sitting on the shelf and see some proof of caring and thought. I have received multiple emails from people wishing me well, too–they are little electronic blessings. Oh, and the friends who cared for our doggies the first night I was in the hospital! They aren’t even pet owners themselves, and yet they stayed overnight at our house to stay with our dogs until we could book them at their doggie care for the rest of the week.

But there are still the weird interactions and disappointments in friends. I am a sick person now and they are scared or I am scary or something is going on. I am running into the limitations of other people. People who don’t come by, who are afraid to come by. It’s interesting to be on that other side now and see what the world is like to be ill and recuperating. The world spins by so quickly for others, and I can’t help but feel left behind somehow.