aphasia and back: Sunday, 20 November 2005

Daniel’s voice / Sarah’s voice

Daniel and I were conversing about a paper he had to present when something I said caused him to laugh. I don’t remember what I said, and I don’t remember it being funny; the laughter seemed intensely inappropriate. He threw his head back in convulsive, maniacal laughter that went on for many minutes, then suddenly lay his head down on the desk. I snorted, asking what was so funny, but got no response. I kept talking irritably for a few minutes with still no response and then began to worry. Crouching next to him I pushed him upright off the desk; he immediately put his fingers to his forehead as if thinking. “Hurts.” “What’s wrong with you?” Still no response. I understood he must have a headache and tried to pull him upright to get him to lie down in bed. He offered no physical resistance but also did not make any attempt to move himself, so I left him there. I kept prompting him until almost hysterical: “Goddamn it, get up! Talk to me!” “Do you need a doctor? Do you need me to call an ambulance?” He made no response but to say “Bright.” Thinking the light was hurting him, I turned all the lamps off and fumbled in the dark for my phone. I screamed at him again in fear and anger – at this point I was still holding out the possibility that he was playing a very unfunny game of possum. I pinched him hard on the arm, but he made no response to the pain, not even a blink. Finally I dialed 911.

It’s odd to describe and remember all these things in fluent language – I experienced most of them as images and ideas, divorced from words, all run together.

The first thing I remember is the bright yellow pain. That’s all there was in the world. No sense of self, no sense of confusion or time or fear; there was just brightness, which hurt, and was yellow – searing yellow, platonic yellow.

After a time, the yellowness started to contract and lateralize to the left, and vision returned – people were looking at me, and I was looking at an analog clock. I recall finding this funny, but not understanding quite why. People were talking to me, but I couldn’t understand anything they were saying. I understood that something was wrong, that I was hurt. Someone put an IV in my arm; I didn’t feel it go in. Everything on my left was still yellow – not visually tinted yellow, but simply yellow in fact, in the way that if you close your eyes, you know that an object is still there where you last saw it. Yellow was a property of the world on the left.

A policeman and four EMTs arrived soon. They all took turns trying to engage Daniel, and all were treated with the same lack of acknowledgement that I had received. They took down names, birthdays, phone numbers, and as much medical history as I could coherently report or trust myself enough to get right. The burly head EMT called for a stretcher, then tried to haul Daniel up. “Can you walk, buddy?” Daniel made no verbal response, but did look the man full in the face – this was the first sign that he had any notion of anything happening around him. An EMT grabbed each arm; Daniel was able to walk some, in a very drunken fashion, though the EMTs had to support most of his weight.

Daniel sat upright easily in the stretcher, eyes wide open. His face was not creased with pain or confusion – or recognition when I called his name. He was conscious but his only apparent emotion was a profound disinterest. He only spoke to say “hurts” or “bright” and the words were always spat out angrily and insistently in isolation, almost like a curse. He didn’t blink enough.

During the ambulance ride, I started to understand a little more of what was happening; fear started to intrude, and the pain started to recede enough so that I actually started to notice it; before, it had been so intense that, I think, it’d seemed like air, something always there and thus not noticeable. I couldn’t hold on to thoughts; they felt slippery. I knew I should be able to understand what people were saying, and I knew that the symbols on the walls were meaningful. I knew what was missing. They seemed to hold meaning if I didn’t look at them directly; but when I tried to read them, nothing happened; they were just squiggles. I understood that the EMTs were trying to ask me questions, and I even knew what sorts of questions they were trying to ask, though I couldn’t put those questions into words inside my head. I realized they’d be trying to see if I was awake, alert and oriented. I tried to talk to them, to tell them I was conscious, that I was awake, but something odd happened – the same words kept coming out.

Not just any words, though. I was trying to tell them that I was awake and that my head hurts a lot and that I can’t seem to understand what people are saying very well and that for some reason everything on the left side seems to be bright yellow … but all that I managed to say, over and over, was “hurts” and “bright”.

We arrived shortly to the Lankenau ER and Daniel was moved to a bed. Two nurses took his vitals while a third questioned me again about his medical history. One of the nurses eventually said to him, in that voice reserved for puppies, infants, and foreign speakers, “We’re going to do an EKG now, okay? Do you know what that is? We’re going to attach some wires to your chest here and see if your heart’s okay.” Daniel didn’t respond, but did again look at her as though he realized he’d been spoken to. The EKG ran and she made some notes on her chart, then asked, “How do you feel now, Daniel?” “Yellow.” “You feel yellow?” “Yellow.” This was the first new addition to his apparent vocabulary in the 40 minutes or so since onset.

The doctor arrived and started to question Daniel; he was a gruff, rapid speaker, and even I had trouble understanding him occasionally. He got no verbal responses other than “bright,” but Daniel furrowed his brow in confusion and concentration and followed the doctor with his eyes. The doctor held up two fingers and asked, “How many?” Daniel could not answer, but after a few long seconds, held up two fingers of his own. His reflexes were normal and he was able to grasp with both hands. The doctor left to schedule the CAT scan. Since Daniel was now at least acknowledging speech directed at him, I asked if he knew my name. He looked at me hard, then his lap, then the wall, then back. “Sss. Ess. Sarah.” “Yes! That’s very good!” I tried to keep my voice out of puppy-register but failed.

Events in the ER all run together for me; it’s difficult to tease them apart without time or verbal memory as a guide, but I remember a few of the early ones. I remember the CT scan in particular. By then I had actually recovered enough comprehension that I was starting to really grasp what had happened – I understood what a CT scan was, why I was getting one, understood that I might have had a stroke. I was confused, because I knew I was perfectly capable of using both sides of my body.

When the doctor started to give the neurological exam, I had no idea what was being asked of me – I heard him asking me to do something, looking at me expectantly. Enough of what he was saying was getting through that I understood he was asking me to do something with some part of my body, but I didn’t know what, or what part. When he finally showed me what to do, by taking my finger and touching it to my nose, then his finger, I was able to show him I could do the task perfectly. Similarly with squeezing his hands and raising my legs – once he demonstrated what I was to do, I could do it. Once I realized he was doing all the standard neurological tests, I think I got better at anticipating what he was after – I think I was lifting my legs as soon as he glanced towards them.

He came back from the CAT scan noticeably improved; this was about an hour after arriving at the ER, and 90 minutes from onset. As soon as he was wheeled back into the room and we were alone he looked at me wide-eyed: “CAT fast!” “The scan was fast?” Nod. I was very encouraged, first that he had noticed such a thing, and was able to report it, but moreover that he found this interesting – he clearly knew at that point what a CAT scan was and why it was being done. I kept prompting him over the next half-hour and he was able to retrieve single words fairly well and was aware of his surroundings. “Do you know where we are?” “Hospital.” Sometimes he made two-word sequences like “hurts left” or “left yellow.” He still had no syntax to speak of. The very first structural utterance he gave was when I asked him about the pain for the dozenth time. “Hurts.” “Your head still hurts?” He nodded, then shook his head. “Hurts.” He shook his head violently. ”It hurts.” At one point he noticed his hospital bracelet and tried intensely to read it, with great difficulty. He pointed to his name: “Drucker Daniel,” then shook his head, “Daniel Drucker. Me.” He pointed to the date: “Today.” I pointed to the date for his birthday and asked if he could read that; he stared for a while and got frustrated. I pointed out the column with his age. He concentrated a moment, then got very excited and waved me over to see: he pointed at the date, then his birthday, then his age in sequence.

Two hours or so after getting to the ER, I’d recovered enough language to say a word or two at a time – nearly any word or two, but no syntax, and only with great difficulty. I tried questioning about what had happened. People were still talking too fast for me to understand. Slow. Again. Slow. I managed to understand that my CT scan was normal. CAT plain. Normal. Plain. Stroke??? I said stroke with my hands on one side, then made a wiping out motion on it. I understood that I hadn’t had a stroke. What?! Then, what had happened? I raised one hand, then the other. Symmetric! I was retrieving more and more complex words, but still couldn’t tie them together with syntax. I was also still puzzled about yellow left left language hurt left left left. I thought it was odd that this percept of “yellow” appeared ipsilaterally.

The doctor returned to tell us that the CAT scan had been perfectly normal. Daniel was clearly trying hard to understand but failing; he balled his hands in frustration and kept telling the doctor “Slow. Slow!” The doctor turned to me, “Are you married?” “No.” “Hmm. I want to do a lumbar puncture – since the CAT was fine, I’d like to make sure there’s no other bleeding or infection. Do you think you can make him understand what that is?” “I’ll try.” As soon as he left, Daniel turned to me expectantly. “Do you remember the CAT scan?” Nod. “The scan was fine. They didn’t find anything wrong.” “CAT… plain” “Yes. Normal.” “CAT plain.” He squinted. “No stroke.” “That’s right, not a stroke.” “Then. What.” I was thrown by this, had no idea what he was trying to say. He tried again: “No stroke, then – What.” If it wasn’t a stroke, then what’s wrong? He was unable to produce anything other than a flat intonation, and so it took me a few repetitions to realize that he was asking a question. “The doctor doesn’t know. They want to try something new. They want to poke you in the back, with a needle, to make sure there’s no infection. You understand?” “Spine.” “Yes.” “Needle.” “Yes.” “Oww.”

Trying to understand the concept of the lumbar puncture was difficult. It was obvious to me that Sarah and the doctor were trying to convey some extremely serious piece of information, but the harder I concentrated on trying to understand each word, the more the meaning seemed to slip away. I changed strategy and tried to let my mind wander; this helped tremendously. The words people were saying started to give rise to ideas in my own head, without me having to really think about it or try to pull them apart from other ideas they might possibly be. Suddenly I had a very strange feeling, though; for a while, I couldn’t always tell which ideas were my own, and which ones were coming from what people were saying, perhaps because I still couldn’t really map on to individual words in real time.

The next time the doctor returned he had spoken to a neurologist, who believed that Daniel’s symptoms were just the result of a migraine that had presented abnormally, so he left us to wait it out. Daniel took the news skeptically. “Headache? This?” He touched his lips, “Talk… speak.. hard!” There was much more affect in his voice now, and he could express more complicated sequential ideas. This was about three to four hours after onset. Something in particular was bothering him. “Symmetric.” “What is? What do you mean?” “Hurts left, yellow left.” He tapped his left temple, then reached out into the space on his left side. “Why?” I understood immediately, probably because I was curious myself: shouldn’t the symptoms manifest contralaterally to the site of the trauma? “You think that’s odd. It hurts on the left, and it’s yellow on the same side. That’s weird?” Nod. I wanted to know more about the yellowness, whether it was a hemifield or the left eye or just a region. I tried holding my hand in various places in his field of view, asking whether it was yellow now, but either he didn’t understand me or the form of questioning was inappropriate to what he was experiencing.

By the fourth hour Daniel could express mostly anything he wanted to, though slowly and with difficulty, and he frequently dropped function words. He could read the clocks in the room and the words and numbers on his bracelet, even the arbitrary patient numbers. A nurse came in and asked him if he knew where he was; he dutifully answered her “Lankenau emergency room,” then turned to me to whisper conspiratorially, “the nice hospital.” At that point I finally relaxed. He started trying to explain what he had been experiencing the past few hours. He claimed to remember nothing before the CAT scan, and progressively more since then. “Everything was yellow on the left?” “No… yellow just… was on the left.” “What was bright? Did the lights hurt you?” “Bright yellow. Yellow was bright.” He insisted that this did not feel like any migraine he had ever had. “Left only. Usually… both. No aura. I get strawberry aura.” His speech became rapidly more and more fluent as we conversed. I asked him unique questions but also did a lot of shadowing, to which he was very attentive. “Hurts less.” “Your head hurts less now?” “Yes. My head hurts less now.” He corrected himself and repeated things more and more frequently until he no longer needed to.

As I became better able to express ideas in language, I became better able to hold onto ideas and manipulate them. Before, ideas had felt as if they were all run together, barely differentiated sometimes. Words, especially, in the sort of dawn when I had just begun to remember again what words were; I couldn’t pick out one word from another because they seemed to be all overlapping in meaning, hundreds of thousands of overlapping shapes only just barely separated. As language returned, the shapes drifted apart, the boundaries became firmly defined, and the tip-of-the-tongue feeling departed; when I wanted to speak, I no longer had to try to pry one word from another; the right word simply was the right word, rather than having to be sifted from all the others. In spite of these difficulties, I never used the wrong word. I often used a word that was less precise than I had intended (the message I was constructing was always more precise than what I was able to produce), but I never said “apple” when I meant “banana”.

I think understanding what was happening helped tremendously in the rapidity of my recovery. From very early on, I was very self-aware and constantly attending to my mental state, trying to the best of my ability to probe out the new shape I found my mind to be in. I felt as if a lamp had gone out, but I’d been expecting it – I knew where everything was, and I just had to feel around long enough in the right places, and the light would come back.

when the darkness takes you, with her hand across your face
don’t give in too quickly, find the things she’s erased
find the line, find the shape through the grain
find the outline and things will tell you their name
Suzanne Vega

The ER doctors in consultation with their and my own neurologist eventually came to the conclusion that I’d had a partial complex seizure. Unknown cause. I’d recently started a new migraine medication, but one not known to have any side effects that could cause anything like this. Essentially, they decided that this was a fluke. A random event that just happened to present in a very abnormal fashion.