Thursday, April 02, 2009

I Wouldn’t Miss a Minute of This

It was a rainy Sunday morning. Our nearly two-year-old daughter, Lyra, woke up singing, which always makes Glenn and I laugh no matter how groggy we are. We got her up, and I made oatmeal. After breakfast I gave my extremely silly kid a long bath while Glenn vacuumed the house. We decided Glenn would take Lyra to the Museum of Science while I had a little alone time. He went upstairs and took a shower.

We have an open format house, but the rooms are on different levels so I could hear that he’d been out of the shower for awhile but I hadn't heard him making any noises like he was coming down and I was itching for as much free time as our pre-lunch time hours would allow, so I shouted up "You coming down?"

“Can you come up here?” he said kind of weakly.
“Are you okay?” I shouted up, not particularly concerned.
“I need your presence,” he said awkwardly. I safety-gated Lyra into the living room and jogged upstairs, imagining he was examining a weird mole or something of that nature.

I went up and he was rocking on the bed, naked. He seemed extremely agitated and mournfully kept saying he was really disoriented. I kept trying to get him to tell me what he meant by disoriented. I assumed he was having a panic attack. I’ve had a few of these and realize how huge of an event they are. I asked if he had fallen in the shower, and he didn’t think so. He kept saying he didn't know what day it was or the date. I told him it was Sunday and that it was okay to not know the date. I got him to deep breath with me slowly to calm down. I made him laugh. I asked him questions he answered rationally, including his name and mine. I made him track my fingers with his eyes. I made sure his whole body was functional. Then he just kept repeating the questions about the day and date.

I still thought maybe he was just panicky. Nothing really seemed wrong except his reaction. I asked him a couple of more questions and he did not know what year it was or who the president was. I still felt disbelief, since he could talk so normally about other things. Was he trying to make sure I understood how seriously he was freaking out? No, he really didn’t seem to know. I handed him each item of clothing as he put it on, occasionally prodding him to do it. He was steady on his feet and able to come downstairs. He definitely needed me along, and I hoped this wasn’t an ambulance situation and I was making the right choice driving – it was just so confusing. I got Lyra into her coat and shoes. I asked Glenn if he was able to bring the stroller outside to the car.

“Yeah,” he said sounding relieved, “I can do that.” I threw some snacks and milk and children’s books in a shopping bag and realized he was still just standing in front of the stroller. I watched him carefully and asked again. He brought it outside and opened the trunk of the car and found that our jogging stroller was already there taking up the space.

“Okay,” he said, “I’m honestly completely confused by this.” I marshaled him into the passenger seat, shoved the stroller in back, strapped in Lyra, and drove us just a mile over the Charles River to Mass General.

The car was completely out of gas. The light had come on while we were on the highway returning from a dinner with friends the night before. I crossed my fingers and pulled up in the passenger drop-off zone and left the car there along with everything I’d brought along. There are normally orange-vested people there to help with parking and emergencies, but there was no one around. Sundays are more difficult. I had no idea how much I should be hurrying, so I hurried. I was hauling Lyra in one arm and propelling Glenn along with the other arm into the ER.

“My husband is disoriented, and is repeating questions about the date, doesn’t know what year it is,” I blurted. They whisked him into acute care immediately. They took blood, hooked him to monitors and asked him a lot of questions. They made him track a finger, use his whole body, show his coordination, and got him in line for a CAT scan pronto. I was getting scared and trying to act cheerful with Lyra and Glenn but started fixating on the iodine? blood? stains on the floor.

A registration administrator came back to finish his intake. She asked if he still worked at his old job that was listed with his information. “Yes,” he said. “No,” I corrected. I married the smartest person I knew, and I considered what marriage with someone with brain damage might be like. He kept repeating his whole name, my whole name, and Lyra’s, proving to himself he wasn’t forgetting everything. He told me a number of times “I know that I love you.” He moved around and some gauze fell out of the bed and I suddenly totally snapped at the registration woman who’d come back to fill in his information. “Are those from HIM?” She said I could ask a nurse.

I started making phone calls.

The second they had him occupied with things I hauled Lyra back out of the ER, worried about the car. I desperately needed the stroller for my squirmy, heavy kid, and didn’t need the car towed. I asked the information desk if someone could help me park it. They said someone was outside, but no one was. I didn’t want to be gone from Glenn for long.

I strapped Lyra back in and realized how scared I was while I circled around and around the parking garage. I was completely freaking out that I couldn’t find a space. The gas alarm beeped at me and there were still no spaces. At last we were in the very last space on the roof and the car hadn’t died. I ran with Lyra in the stroller in the rain to the elevator, and back into the hospital and ER.

Lyra was struggling being in the stroller. Glenn got into this endless loop of asking me the exact same questions over and over about how he got there and what was going on and had he had a stroke. “I don’t think so,” I said. “I don’t know.” “Jesus,” he said every time, “This is pretty freaky. Okay, I think this is the most scared I’ve ever been.” I gave Lyra snacks, and made her laugh, and just kept answering him.

Finally I got through to my friend Jade, who was able to come right over and she played with Lyra out in the waiting room and hallway. She also called her father who heads up a child psych research department at MGH for help understanding what was happening. Stroke didn’t seem likely – he’s not much of a candidate for one and was speaking normally and using both sides of his body fine, virus I thought would probably have had a temperature with it, and brain tumor was the other obvious candidate. I disassociated a little then.

They took Glenn for a CAT scan, and Jade and Lyra and I went to the cafeteria where Lyra explored all the benches and chairs while we picked at fruit and grilled cheese. Then I got through to Christie, a mom friend of mine I met in a new parent group when our kids were born. Lyra, like me, adores Christie and her daughter, and we take in each other’s kids frequently, and frankly, look forward to it.

I explained to Lyra that Daddy was going to talk to the doctor for a while and they were going to take some pictures of his insides to make sure he didn’t eat a puzzle piece (there were definitely some missing from this situation, but this is a reference to Curious George Goes to the Hospital). She nodded and was fine with that explanation. Christie came and picked up Lyra. Lyra was completely delighted with this and Christie took her to my house and fed her and put her down for a nap. Jade stayed with me.

They brought Glenn back, and he had no idea he'd just had a CAT scan. He didn’t remember it at all. He could talk about all kinds of other things normally here and there but then would ask the same set of about seven questions about how he got there, why was he there, what happened, were there any theories. "I had a CAT scan and I don't remember it? Jesus. That’s freaky. Okay, I think this is the most scared I’ve ever been." Each round he realized completely anew that he was scared. Each round he reacted the same way.

Eventually after maybe twenty rounds of Jade and I taking turns answering, I wrote him answers on an index card, which helped everyone and greatly calmed him down. He clutched it for hours and hours. Whenever we had any results of things that had been ruled out, I added it to the card for him. Jade's father spoke to me on the phone about the possibilities of a tiny reversible stroke caused by a brief lack of oxygen flow.

Glenn read his card, and then said “Have I asked you these questions a lot,” for the fourth time. I took the card and added “And yes, you’ve asked these questions a lot.” The next time he read the card he asked me, “Have I asked you if I asked these questions a lot, a lot?”

Glenn was occasionally totally normal seeming. He’d go to talk and I’d chant to myself “Be Here Now” like it would help him not slip away like his memory. I thanked my stars that Jade was with me and Lyra was better than safe, she was excited to be with Christie.

The CAT scan was normal. No tumors, stroke signs, infection signs. A psych consult was called and Jade and I stood outside the curtain while the man talked to him and asked questions with puzzles and memory tests. Glenn could subtract series of numbers faster than I probably would with a calculator but did not know I'd been standing there five minutes before. He couldn't keep three words in his head when asked again after a couple of minutes.

The neurologist talked to him and did similar tests. Glenn was aware he wasn’t thinking right and was fighting it. He kept trying to deduce whatever he could – found a cleaning schedule on the wall with most days checked off and guessed what day it was based on that. Sometimes it wasn’t so hard: the doctor asked him where he was and he said “MGH.” When asked what that stood for, Glenn said “Well, Massachusetts General Hospital is written on your shirt, you should probably give me a harder one.” He was given drinks for having low potassium. He didn't remember drinking it later but guessed he must have since he saw the cup. A neurologist came in and asked him similar questions. Glenn saw a jug of urine and told the doctor -- "I don't remember peeing but I'm guessing you didn't bring that with you…." He was himself, but not. Then the doctors left and he was back to asking his questions and reading the card.

Lately I’ve been eating lunch at an Asian food court with my daughter after her gym class on Fridays. We often see Chick Graning there, who is in a band I love called Scarce. I met him in passing years ago in the early nineties when I was going to clubs a lot, as well as his ex-fiance, Tanya Donnelly. Scarce was getting huge but then Chick had a brain aneuyrism and had to even relearn his own songs. I’ve often wondered if he feels like the person he was before; if he IS the person he was before. I stared at Glenn, who felt like Glenn to me and then like some stranger in his body. How much does a person’s memories make them who they are?

They sent Glenn to the ER Neurology Observation unit up on the Neurology floor, past a calm looking sleep lab. He started making a joke in the elevator “What…do I have BRAIN FEVER?!” he said it was a joke from a movie with Kevin Kline and Sally Field. It was me who didn’t remember the movie. “Soap Dish,” he said, as they wheeled him into his room. He did not explain the movie reference to the doctors or nurses he repeatedly made this joke to later, he just said “What? Do I have BRAIN FEVER?!” Sometimes he asked me if he’d made that joke before.

He had more vocal and coordination testing. The doctor stood at the end of his bed while a muted TV overhead showed a nude woman airbrushed for television. “Is this part of the test,” Glenn asked, “trying not to be distracted by that?”

I remember studying the sense of self and our concept of personhood. I don’t think John Locke, who believed selfhood depended on continuity of memory had ever seen how a person can keep their cognitive skills and most of their factual knowledge while interrupting their self narrative, their story for a day. This was Glenn, but not Glenn. I don’t remember reading anything about how a person keeps their personhood in another person’s perception, only their own. This was all too much to process -- the medical and the philosophical were seeming a bit hard to separate.

Jade made sure I had snacks, drinks, and a notebook to write in, and helped me jot down some of the doctor’s names. She got a sudoku and puzzle book for Glenn. A neurologist spoke in hushed tones to us in the lounge about the possibility of Transient Global Amnesia, a medical mystery they sometimes see where a person loses mostly their short term memory for less than 24 hours. She left and we tried to think about this concept.

Glenn was going for another MRI, so we decided to go home and eat. We asked Glenn if he’d like his computer or iPod but he didn’t want them. They took him for an MRI, and Jade and I headed to my house where Christie was just getting Lyra up from her nap.

Christie decided to bring Lyra to her house and have the kids play together and feed them dinner there, then put her kid to sleep, then bring Lyra home to put her to sleep and stay with her here. (Her husband was at home with her kid.) Jade’s husband Frank offered to bring us dinner. Jade asked me what I’d like, and I heard myself say I really couldn’t answer questions; please don’t ask me any questions. Frank brought burritos and then we headed back to the hospital, bringing along Glenn’s ipod anyway, as music is very calming and centering to him. We also brought my computer and some DVDs, but couldn’t find Soap Dish in his movie collection.

I asked the nurse if there was news and they said they were going to do some more scans and he obviously wasn’t “right in his head.” I was nervous but wondered if he'd been making the Brain Fever joke again. I talked to him and he seemed a bit improved to me. Then went out and asked if it was still necessary that he not eat. I didn’t see why it mattered for scans of his head. The nurse said of course he could eat. This angered me as we’d been told earlier he could not, and nothing since then. I made them get me some food for him immediately as he hadn’t eaten since the oatmeal.

Glenn was starting to remember things he had not remembered before, and he was not stuck in a question asking cycle, though was still clutching his card and still couldn’t remember the morning or the afternoon. He ate a turkey sandwich and remembered details from the previous night that he had not known before. His memory seemed like it was rolling back in like a slow tide. We sat and told stories in the fluorescent gloom, floating in slow hospital time. A new neurologist came in who was his assigned doctor. Both Jade and I immediately liked him.

The new doctor treated the condition and the patient alike with interest. Glenn responded well to him too. He was asked the same puzzles and memory tests and did much better. Earlier they’d asked him to list as many animals as he could in two minutes early and he’d gotten a handful of them. This time Glenn sounded like himself – he rattled over the most extensive and exotic list of animals you could imagine. The doctor was beside himself cracking up and said he’d never heard such a list. (Glenn’s list began with an animal we learned from Lyra’s alphabet book: a zorilla.)

I was feeling great about his doctor and his improvement and after Glenn had another MRI, they said they were admitting him (I was prepared to make them if they didn't), and Jade and I decided it was time to go home. Jade and Christie had both been helping me since before lunch and it was nearing 11:30pm. I came home and sent emails and looked up information online. Glenn meanwhile listened to some music, had his heart looked at, and had a third MRI. I was extremely relieved to be in my calm house away from crisis. Glenn was enjoying the MRIs -- he said the noise they make was like some experimental heavy metal he enjoyed.

In the morning my inlaws came and took care of Lyra while I went back to MGH. I was afraid to go. I found him in a shared room with a nice view of the river in Neurology. I’ve examined this view multiple times when I gave birth, as well as visiting my father recently after knee surgery. I'm starting to feel some ownership of the view. Glenn seemed entirely Glenn to me, though he was really tired. I felt reunited and relieved.

He was sharing his room with Bill, from York Beach, who had had a stroke the night before while playing cribbage with his brother. They were going to fly him there but the weather didn’t cooperate. His wife arrived while I was there, and seemed used to the drill. Bill had, after all, had five bypass surgeries already in his life.

While Glenn was wheeled off for an EEG, the head neurologist and the whole team came in and asked me a lot of questions about what happened. They all discussed this classic presentation of Transient Global Amnesia. It came on suddenly, was witnessed (we’re fascinated by what might have happened if he were alone), he did not particularly lose long-term memory or cognitive memory and was aware of who he was and his loved ones.

They left and I plugged in my computer and read everything I could about TGA. I’d lost my phone between the car and Glenn’s room, so I emailed updates and later had Glenn make calls from his phone. He got no answer from his parents, who eventually showed up at the hospital, and his sister had come over and was watching Lyra. They were in time for his discharge.

No tests showed anything, except an incidental finding of something benign on one MRI of cholesterol blob or something on an ear bone he’ll have scanned eventually. His EEG (brain waves) showed very slightly slower action on his left side, but he showed no typical seizure symptoms. He'll have another EEG in a couple weeks. They ruled out most everything. His arteries are pristine. (I was jealous he’d had so many scans. I’d like to know everything was well in my head and arteries!)

And I can heartily say with both meanings: I wouldn’t miss a minute of this. Glenn, however, is missing most of Sunday. And it will likely never happen again.

This is a Mayo Clinic description of Transient Global Amnesia.

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At 1:42 PM, Blogger David said...

Holy crap! I hope Glenn is OK now. I can't imagine what this must be like, except from what I've read in books (fiction and non-fiction alike) as well as the famous movie Memento.

Is there any explanation aside from some crazy glitch? The description in the Mayo Clinic makes me wonder if anyone has a clue about this kind of thing whatsoever. It almost sounds like some crazy drug trip (and not one that you'd want to repeat).

I have to admit that I started getting kind of panicky as I was reading it. Ironically, it has to be one of the most 'memorable' posts I've ever read...

At 10:37 PM, Blogger Teresa said...

Oh my goodness, what a heart-wrenching, scary situation you went through! Thank God you were close when it happened - and it sounds like you had a wonderful support group around you to help.

This sounds like a story you could tell at The Moth someday. Your account is very compelling. A recent Moth podcast featured a story about a guy experiencing something very similar, waking up on a train platform in India with no idea how he got there. Turns out it was a side effect from an anti-malaria drug he was taking.

Holding thoughts of health and wholeness for Glenn and your entire family!

At 9:08 AM, Blogger Teresa said...

Bethany, I don't know you but I am the bass player Joyce in Scarce. I passed on your blog to Chick. I hope that your husband is okay. I couldn't stop reading the passage you wrote as I could feel myself going through what I went through with Chick. And you doing that with a kid no less I can't imagine. You are super strong. Would love to send you a copy of my book about Chick's experience. Maybe in some wierd way it might give you comfort. The amazing thing about what Chick went through showed me the capacity for someone to come back even through the worst of circumstances. human resilience can be surprising with people who love you are around. Send me an email to
if it sounds something that you might be interested in. All the best to your family for a healthy happy year.


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