Below is an essay I wrote last year about a unique experience I had. A little different from my usual photos and commentary posts. Perhaps you know someone who had a TGA. I had never heard of it until I landed in the hospital.
Saturday, January 23, 2016
Several people are crouching close by. They speak deliberately to each other and to me. I respond to their questions but I have no sense of what I am saying. We’re in a very small space. I am lying down. Is this room moving, is this a vehicle? Why am I here? The scene quickly fades like a darkening theater. A silent void remains.
I’m on a moving bed. A woman is having trouble maneuvering it. Then, in conversation with another woman, she realizes it has a motor and turns it on. We glide through brightly lit narrow hallways. Where am I? Quickly an enveloping shadow overtakes the light.
Another small bright white space. How did I get here? I am in a small bed. I see Chris, my life partner, sitting back quietly in a chair. J, a friend, is closer, leaning toward me. I am covered in a crumpled white sheet. What has happened? Was I in an accident? If I was, I remember nothing. I search my body for clues and discover no pain and no discomfort other than befuddlement. I can’t quite make sense of my surroundings but I do feel cocooned by caring people. I am not afraid.
One “wall” of the cubicle is only a sliding curtain and it opens to a hallway of brisk activity. People also sit at a counter. It looks like a bar but they stare into computer screens instead of drinks. Sounds crowd my head, louder than my thoughts. People chattering, the clanging of carts and equipment. Orders being shouted. A woman nearby screams unabated. Her wailing voice reeks of uncontrolled fear and pain beyond limits. I wonder what has happened to her. I know she is in the right place and I wish her comfort and quick relief. I hope she is not alone.
A man walks in and introduces himself. He talks about what is happening to me but I cannot remember what it is. Information disappears like water down a drain, flushing out to sea, impossible to bring back.
Where am I? How did I get here? J must have brought me. Where am I exactly? Clearly I am in a medical facility; I see people in scrubs. There are intricate machines, electronic monitors, tubes and wires decorating the room. The crisp smell of cleanser and rubbing alcohol is in the air. I know something serious has happened to me. But what could it be? Is it a stroke? I search for anything to explain my circumstances.
People continue to ask me questions. I can’t seem to find the answers. I am stumped. I know I should know but I can’t recall no matter how hard I try. I scrunch up my face in deep thought, make an effort to recover the correct response, give up, chuckle and say, “Now, that’s a good question!” I do not know the year, month or day, where I am or why.
I am in another room; I don’t remember being brought here. Medical devices beep and tubes dangle from my right arm. Only Chris is in the room. I wiggle my feet; I am wearing bright yellow hospital traction socks. I have on a blue print hospital gown and, surprisingly, my own black pants. Other people come and go.
Chris explains to me what has gone wrong but I can’t remember what he says. What disturbs me most is I cannot recall where I had been before. What had I been doing? What had happened to bring me here? How could I not know? Something terrible must have happened. I plumb the depths of my mind; there is little there to reveal my recent life. The previous hours, days, weeks, are now muddled, elusive. I am told that I am in Dominican Hospital. I have visited friends here but this is my first time as a patient.
I begin to remember more about forgetting. I watch and recall how everything in the moment seems clear but then fades like a train disappearing down a dark tunnel. Two nurses check my body for lesions and wounds – a necessary protocol, I assume, for anyone who might be in the hospital for an indeterminate amount of time. There are no sores. I remember that I was clear when they were here, we chatted as they looked me over. But now it has become dreamlike, distant and vague. I know it happened just a few minutes ago but the details are gone, the image smudged, dim. I tell the nurse that I am losing memories; she nods with understanding.
People reassure me; they say I will recover soon. From what? I am repeatedly tested for stroke. “Squeeze my fingers.” “Lift your legs.” I pass each time.
Chris asks me if I remember J. Yes, I recall she had been with us. Had she brought me here? This must have been hard for J. Just a few months ago she had been in this hospital to remove a cancerous tumor from her brain. This is probably the last place she wants to be. But I am lucky, her natural concern and her experience navigating the local health care system has come in handy. Chris hates anything to do with doctors and medicine. This must be difficult for him too.
Finding memories feels arduous. I reach inside but only discover empty, silent space as though my own mind is shunning me, refusing to respond to my entreaties. Someone again asks me what year it is. Such a simple question. 2013 comes to mind as an image, lighted numbers on a black background. The date is followed by several blank spaces as
if they are waiting to be filled. Interpreting the mind image, I think it must be later than 2013. But what year can it be? How many years later? I do not know.
How can the circumstances of my life slip away like this? I know I had had other plans, important plans, for the day but I do not know what they were. I announce, as a kind of joke, “I didn’t schedule this. This wasn’t in my appointment book!” It is important to acknowledge to others the shock of my situation, to acknowledge the uncertainty of my life.
Some memories of recent weeks are returning but the previous five days are still out of reach. Chris interviews me while making a video. He prods me to recollect, to find and gather the memory fragments that have fluttered away.
“What did you do on Thursday?”
I pause. “Uh . . . I don’t know.”
“It’s something you like to do.”
I contemplate this. Then an image of the seashore comes to mind. “I went to the beach! I thought I dreamed that.”
“And what did you find?”
I pause. “I don’t know.” Chris waits.
An image of a small container appears in my mind; I look in.
“Sea glass! . . . I thought it had been a dream!” I smile at the pleasant recollection.
My ability to think is slow and thick like old honey that is too congealed to flow. When I am asked a question, there is initially no inner response, nothing evoked, nothing triggered, nothing known. Then gradually, out of the darkness an image approaches. The words and meaning come a few seconds later, if at all. Probably in ordinary consciousness the process of shifting from image to words is so fast it seems to happen simultaneously. But for now I get to watch the brain work in slow motion.
New memories are beginning to stick. A little while ago, only feelings and mental impressions lingered; I couldn’t retain detailed information. Now, for longer and longer periods, new memories, instead of sinking out of sight into murky water, float nearby, available when I need them.
I think I have already been told, but I ask Chris, “Where was I? What happened there?”
“You were teaching a daylong meditation retreat with M. At the lunch break, you couldn’t remember the morning. You were confused and J drove you to urgent care. M called me immediately.”
“Oh my god! I don’t remember it! M was here from Boston?” I had a vague feeling that M and I had discussed this possibility when I saw him over the Holidays, weeks – or was it months? – earlier.
“I left M on his own? Is he okay? I need to talk to him, check in with him.” I felt some guilt. I must have arranged for us to teach together and now I left him to fend for himself in a strange city.
Chris responds quickly, dismissing my need to be concerned. “Don’t worry about M. He’s fine; he finished the afternoon. He told the group that you had to leave because of a ‘bug’.”
I’m amused by this. Yes, some kind of bug alright, but not a cold or flu, more like a insidious computer virus infecting my brain.
I am stunned and disturbed to realize I had lost all memory of being with M earlier today. At the workshop I would have been sitting in front of a large group. I would have been speaking, giving instructions, answering questions. Did I behave normally or oddly? There would have been people there I knew, like J, but they had all been erased from my memory. Chris says that M and I met the day before to plan our workshop. I don’t remember that either.
“Did people know there was something wrong with me?”
“Mostly not. But J thought there was something off at the end of the morning session. She talked to you for awhile and decided to bring you in to be examined. You had a CT scan and a EKG. An ambulance took you from urgent care to the hospital.”
I have no memory of the tests or the trip.
I dredge my memory banks for any images from this morning or the last few days. I realize the few mental pictures I do have, all have the same flavor. I can’t tell if I have dreamed, imagined or actually experience what I recall. This is startling. They are all equally dreamlike, difficult to retrieve, devoid of detail. Like a dream, they are familiar but they don’t seem to pertain to this waking world but rather to some other reality I haven’t really lived. I had assumed most of what I saw in my mind were dreams; especially since I feel like I have been asleep, totally absent, for days. I start asking Chris if specific events I recall are real or imagined.
The man in the white jacket I has met earlier returns. He tells me that he is a neurologist.
He asks, “How are you doing?”
I shrug my shoulders and raise my hands palm up, shake my head and smile, meaning, I don’t really know how the hell am I doing! Do you?
But Chris adds, “She is doing much better. She’s starting to remember things.”
The doctor explains, “You have Transient Global Amnesia. We don’t really know what causes it. Over the next few hours, you should regain most of your recent memories and your ability to make new ones. But you may never remember this morning. By tomorrow you’ll be fine. This probably won’t happen again. But we want to keep you overnight for observation.”
That’s okay with me. My body aches, a foggy confusion clogs my thoughts and I am tired, so tired. I am relieved to be surrounded by trained medical staff for the night and machines that monitor my well-being.
I ask Chris for my smartphone so I can look up Transient Global Amnesia (TGA.) My eyes burn and tire as I try to focus on the small glowing screen. After a few minutes I quit. But I first discover a few facts.
TGA is a rare neurological event. When it strikes, you lose the ability to make short term memories. Most people also temporarily forget the recent past, from days to months. You know who you, family and friends are. You still have what’s called “procedural memory”, you can do those things that you do by habit, like talking, getting dressed, even driving (although you might not remember where you are going.) Your personality, ability to interact socially, and even your sense of humor remain intact. Although basic memory returns, some people have cognitive and memory loss symptoms that linger for weeks and even months. The doctor didn’t mention this.
One of the most peculiar symptoms of TGA is the repetition of the same questions ever few minutes. It is like a video recording being replayed, with the exact same words, gestures and affect. Chris tells me I had done exactly this. Where am I? How did I get here? Again and again, forgetting that moments earlier I had been given the answer.
It’s most common in people between 50 and 75; the median age is 62. I am 62. There are many “precipitating events” common to people with TGA’s – hard exercise, sex, jumping into cold water, stress, a recent medical procedure – but it is not known why these experiences trigger the disruption in short-term memory. I had had a colonoscopy several days before. People who have a history of migraines are also more likely to have a TGA. I’ve had migraines since I was twelve. Occurrence is slightly higher in Scandinavians. I am of Norwegian descent.
It’s been 9 hours since I lost my memory. I now know the date, month, year. I know where I am and how I got here.
After Chris goes home for the night, I turn on the TV to entertain my stagnant mind and to enliven the stark impersonality of the hospital room. “The Matrix” is on. I am pleased and amused. Here is a tale that intermixes physical reality and mind-created worlds; it is an inquiry into what is real and what is not. Just up my alley tonight. Other movies come to mind that remind me of my situation, “50 First Dates”, “Memento”, “Groundhog Day.”
As we chat, he asks, “Are you on the hospital staff?”
“No, why?” I am surprised by the question. Do I look like a doctor?
“Well, I heard you were teaching a workshop on medication this morning.”
I chuckle. “No, it was a meditation workshop!” I add, “Sometimes meditation can be as helpful as medication.”
I am exhausted yet sleep seems unlikely with the headache, back pain, mild nausea and general malaise I feel. My heart and my spirit are heavy and fragile. It occurs to me that I could die tonight. Maybe I will slip into the darkness, that empty place of not-knowing and not return. Maybe death is like this not remembering, the same silent blackness into which my memories fade. If death is like losing my memory, then it’s not so bad, just a painless disappearing. A tender sense of fear and sadness arises as I recall my life and those I love. I know that someday, if not tonight, I will pass into that mystery.
It’s morning and I didn’t die. Despite feeling as though I hadn’t really slept, the night passed quickly, if uncomfortably. Chris has returned and we wait, a bit impatiently, for
me to get discharged. He’s at lunch in the hospital cafeteria, when the neurologist finally checks in on me and says I can go home. The doctor is confident that I will be fine. There is no follow-up treatment except to check in with my PCP. He repeats that the cause is unknown but speculates my incident might be related to my colonoscopy.
As I wait for Chris to return, I turn on the TV one more time. “50 First Dates” is on. I am delighted by the synchronicity. The Drew Barrymore character, like me, lost her short- term memory. Her cycle was one day; she would wake up each morning believing it to be the day before her head injury, every repeated new day after that lost. My short term memory, in the depth of the TGA, only lasted 1-2 minutes.
Relieved to be home, no longer a hospital inmate, I stretch out on the couch and watch the afternoon light stream through the silent redwood trees. All I want now is a warm shower and some sleep. All I want is to return to being someone who remembers.
Please do not reprint without permission. Contact Carla at: firstname.lastname@example.org.
Wow, you posted it, very brave of you! How does it feel to come out as a TGA survivor?
Wow! I missed this when you first wrote it. What a wild and frightening experience. Love your description of it, and your thoughts about it, its possible parallels with death. How easily everything we take for granted can vanish.
Thank you for this entry to your blog. I had a TGA in November of 2018 and am still putting all the pieces together. I find the emotional recovery to be troubling and started searching for others who have experienced this rare , frightening event. You wrote about it so well. You expressed thoughts I have but did not find the words for. It has help a lot. Thank you for sharing.
I am so glad you found it helpful. I wrote the piece both to process my own feelings/experience and to be potentially helpful and informative to others. I also found it useful to read other’s experience and to be reassured I would be okay. I had “mild cognitive impairment” for a few months afterward but 3 years later I am fine. However, I am supposed to have another colonoscopy and I don’t want to because I believe that may be what triggered the TGA! The likelihood of another one is small but I don’t want to take any chances. I think it is more common than the medical field believes. A lot of people never go to a hospital and it is never recorded. Just last weekend, I was visiting a friend and describing my TGA. Her jaw dropped because another friend had recently had what I was describing but never got medical attention and didn’t know what it was. The experience is disconcerting and it highlights our physical and mental vulnerability. Take care of yourself, Carla
Thank you for responding to my post. It is very reassuring to hear that you had some residual “mild cognitive impairment”. I am 3 months out and still feel fuzzy headed some days. Now I know there is a good chance that this occasional fog will lift. In my case I think the TGA was brought on by sleep deprivation the night before. I am a potter and I had a deadline, so I set my alarm for every two hours the entire night to turn the temperature up on the kiln. By morning I was wiped out , but we had places to go and things to do. I absolutely felt it coming on throughout the day, though I had NO IDEA what was about to happen. By 6 PM I was completely out of it and terrified. I too, had thoughts about this being what it was like to greet death. But, that’s where all my memories end. By 8 PM I was in the ER with my husband. I have zero memory of the next 8 hours. I apparently had a 90 second memory loop where I repeated the same questions (patiently answered hundreds of times) over and over, becoming very anxious each time. After making sure I was not having a stroke, a seizure, or a number of other life threatening things, the doctors took pity on me (and my patient husband) and sedated me and put me to bed. I spend two days in the hospital having many more tests. As I was released the doctors assured me I would be back to normal in no time. But, I wasn’t. It took weeks to feel mostly right again. The emotional aftermath has been difficult. I worried that this state was the “new normal” for my brain function. It sort of felt like PTSD. I know EXACTLY how you are felling about another colonoscopy. I have become hyper vigilant about getting a good night’s sleep. Revisiting certain places and things from that day bring back the sheer terror I was feeling as it came on. I have developed this inner dialog with myself to calm the fear and move forward. Having a real conversation with a real human being who knows what this is like from the inside is so very helpful. Thank you again.