I Forgot to Remember: A Memoir of Amnesia (9 page)

Happily for me, though, the facts don’t seem to bear out the possibility that it is “all in my head.” Psychogenic amnesia is “much
rarer than amnesia that results from brain damage and easy to distinguish from it,” according to Larry Squire. When amnesia is psychological in origin, the damage is typically limited to past memories; the ability to form new memories is not impaired. People with psychogenic amnesia sometimes lose episodic memories of their own lives but retain semantic memories about the world. Others lose both episodic and semantic memories. Psychogenic amnesia can block the memory of a single event, a full life chapter, or a person’s entire past history. Often, psychogenic amnesia clears up in a relatively short span, and lost memories are recovered.

Squire and colleagues carried out the first study of a large group of patients with psychogenic amnesia, ten cases in all. The researchers found that almost no one in the group had trouble forming new memories. But eight of the ten had retrograde amnesia that lingered for more than a year after its onset.

Squire’s research found that the circumstances of each case varied according to how each patient “thinks amnesia works,” because their brains created the problem. So they forgot the things that they thought amnesiacs should forget, and they remembered the things they thought amnesia patients should remember. For some patients, the amnesia itself was triggered “by an incident that people believe should cause a memory problem,” such as a car wreck or a blow on the head, Squire says.

The range of symptoms in psychogenic amnesia is “as variable as humankind’s concept of what memory is and how it works,” Squire and his coauthors wrote. In one recent case, a Florida amnesiac awoke each day having forgotten all that she had experienced in the previous day. The case was unique, and researchers concluded her amnesia was constructed to precisely replicate the memory loss depicted in the film
50 First Dates.
That film became
her template for how amnesia works. The patient later improved in therapy.

People often wonder why Jim and I didn’t have more interest in my condition, and why we didn’t seek more help from neurologists or psychiatrists in rebuilding my life. I have certainly thought about this question a lot recently. Jim and I have discussed at length why we eventually gave up on the medical community. The easy and perhaps blunt answer is: frustration. My frustration. Jim’s frustration. The frustration of the many and varied doctors and other professionals. Multiple tests were given. Many images were taken. They always seemed to come back “inconclusive.” There was no pill to give me. There was no surgery to perform. Therefore, it must just be in my head.

I think it is also relevant to mention again that I didn’t actually think there was anything wrong with me. I didn’t get that I had any memory issues or problems with speech and understanding. I didn’t know that I was different in any way from anyone else until many, many years later. Jim noticed a lot of my difficulties. I was slow in speech. I repeated myself a great deal. I was forgetful and often got lost. I didn’t read anymore. But because I, for the most part, outwardly seemed okay to him most of the time, he tended to ignore the countless little things. He just wanted me to be okay so we could move on with our lives.

I was twenty-two and Jim was twenty-four. We had two young boys who were a bit rambunctious, a bit disheveled, and who also probably rarely had their shoes tied. My shoes were probably not often tied either. Basically, after several months of useless doctor’s appointments, with no kind of noticeable improvement in my condition, and so many other things in our lives to manage, we simply stopped going.

—The Rolling Stones

A
fter being in the hospital for only three weeks, I was released to go home. That in itself was a small miracle, because Jim was initially told that with injuries such as mine, it wasn’t unusual for people to stay hospitalized for eight months, maybe longer. But medically speaking, my MRI scans did not show the doctors any kind of persistent or residual damage to my brain. So in their opinion, I was all better. In the words and spirit of those Bible-thumping evangelical preachers, “I was
healed
!”

The rehabilitation staff told Jim, “Our goal is to get someone who is five to fifteen percent functional to twenty to thirty percent.” Jim was told that I was quite possibly at 70 or 80 percent. I
was the goddamned valedictorian of head injury patients! The head physician on the ward told Jim, “I’m not sure there is much more we can do for Su. She could be here another six months, and I don’t know if her condition would change all that much.” Jim thinks that my relatively young age combined with my health and level of athleticism at the time had a lot to do with my comparatively short and rather miraculous “recovery” and early release.

The hospital records present my release as if it was a matter of mutual agreement. That is how Jim remembers it. But in hindsight, my discharge seems rather abrupt, certainly considering that three days earlier, a neuropsychologist had described me as moderately to severely impaired in five major cognitive areas.

“I remember Jim kept saying, ‘We’ve got to get her out of the hospital, because they keep dropping her on her head,’ ” Barb recalls.

My mom: “I do think you should have been in the hospital longer than you were.”

Here are a few of my own thoughts about all of this now: Jim was driving everyone crazy at the hospital with his demands and interference. Jim didn’t know what to do with Benjamin and Patrick. He had to go to work, and he had run out of, or used up, all his options for babysitting (i.e., friends and family). I think I was somehow “fast-tracked” out of the hospital, either because of Jim’s behavior or our medical insurance coverage. All of a sudden, people started writing in my chart that my problem was most likely something psychological rather than physical, and I was shown the door.

My sister Barb is convinced that it was too early for me to go
home. To this day she tells me, “You were not ready. You should have gone to a rehab facility, or you should have gone home with a crew of therapists; someone to help you with speech, a physical therapist to help with gross motor skills, and an occupational therapist to help with fine-motor tasks. You couldn’t write. Walking and moving around was hard for you. You couldn’t even use your left side, and you were left-handed! And you had two little kids.” Barb never thought it was a good idea for me to go home when I did, but as she tells it, “I couldn’t do anything about it. And you couldn’t do anything about it. You didn’t know anything. I couldn’t really talk to Jim. He wasn’t there to listen.”

Let’s think about this for a second, shall we? And part of this will just be me speculating, of course. Did I know who I was? After three weeks in the hospital? I probably knew my name was Su Meck. Did I know Jim, Benjamin, and Patrick? Did I understand
husband? Marriage? Son? Brother? Mother? Father?
Did I make connections as to who these people were in relationship to me? My guess is no, I didn’t. I probably didn’t have a clue as to how to take care of myself, let alone two very young boys. Was going home to a house I didn’t know, with a family that might just as well have been assigned to me, really a safe, smart, logical next step? Looking back, I don’t think it was safe, smart, or logical. And yet, that is exactly what happened.

I may never know why. Maybe Jim didn’t have a choice. Maybe it was some kind of insurance decision. If the insurance company decided that I was well enough, they may have put pressure on the doctors to have me released. Jim certainly would not have been able to pay my medical expenses without insurance. Was Jim ever told what services may have been available to me once I was home? He tells me he doesn’t remember anything like that ever being discussed. I
find myself wondering, Why didn’t Jim ask? But I have to keep telling myself, all of this was happening and all of these decisions were being made when Jim was just twenty-four years old.

Whatever the reason, I was released from the hospital and taken to live in a house I did not remember. The 1970s gold-flecked linoleum and shag carpeting, the green scratchy couch, the brown kitchen cupboards, the large backyard surrounded by a privacy fence: None of these things registered with me. Jim remembers me walking hesitantly down the hallway that led from the family room back to the bedrooms. He recalls me just staring at all of the family photographs that were hanging there. “That’s me!” I said, pointing to my image. “And that’s me, too!” I recognized myself in the more recent photographs, but I had no recollection of the places where even a single one of the pictures had been taken, or any of the stories behind them. I was not able to identify any of the other people—other friends and family—in the photos. It was sort of like being airbrushed into a life. A real-life
Twilight Zone.

I walked into the kitchen and opened every single cupboard and drawer. There was nothing recognizable about any of this stuff. I probably didn’t even know what most of the items were called, or what they could possibly be used for. The hospital was all I knew. Everything in this house was unfamiliar, and I can only imagine how bewildering and daunting that unfamiliarity would have been to me. What would it have felt like for me to not know even the names of objects in my own home? But then I think, did I even care? Did I ask questions, or was I just too overwhelmed? Jim doesn’t
really remember much of my first days at home. I’m thinking having me there again was just as weird for him as it was for me.

He does remember my first “lightning strike,” though. It occurred that very first night home. Jim thinks I was trying to help him make dinner. (Maybe I should have just stayed out of that kitchen).

I don’t remember this, but after my accident, when I was still in the hospital, one of the things I was taught how to do was make tuna fish salad. I am sure tuna fish salad was used as a “training food” for food preparation and kitchen safety purposes because there are a lot of different steps in preparing tuna fish, as well as a lot of learning how to use kitchen tools. I was taught (over the course of several days) everything from operating a can opener, to properly and safely using a sharp knife and cutting board, to using a measuring cup, to stirring all the ingredients together with a spoon in a big bowl, and then to finally manipulating another (not sharp) knife in order to spread the tuna fish on bread. I was taught how to properly wash and peel fruits and vegetables, and even how to boil an egg in a pot of water on the stove.

Armed with this vast expanse of knowledge, I was sent home with the expectation that I would be able to feed my family and myself.

And that is exactly what I did. I fed my family tuna fish. Breakfast. Lunch. Dinner. Did anyone complain? I don’t know. Did Jim give the boys other stuff to eat? Did he make himself other stuff to eat? Again, I don’t know. Did I attempt to cook or prepare anything else? I seriously doubt it. I had been told that “tuna fish equals meal, and meal is what you eat.”

On my very first night home, dinner was probably something really simple for Jim to prepare, like frozen chicken nuggets and french fries that he could just throw onto a cookie sheet and toss into the oven. But the cooking noises of clattering pans and utensils, the bright overhead kitchen light, the commotion of two small, excited, and hungry children was all too much, and I was suddenly slumped on the floor. Jim saw me fall; saw me on the floor, motionless, in the area between the kitchen and the garage. My eyes were open, but I was unresponsive to his voice. It was “almost as if a light switch had been turned off,” he recollects. This very same thing had happened a few times in the hospital, but apparently not frequently enough for anybody to be concerned. (And once again I think, Really? Hmm!) After maybe five minutes on the kitchen floor, a very long five minutes, I slowly became aware of my surroundings, and I pulled myself up. Enter: Piercing Headache and Foggy Confusion! Whenever there is “Lightning,” “Piercing Headache” and “Foggy Confusion” always follow. All three (Lightning, Headache, Foggy Confusion) are to me, even to this day, actual characters or creatures with definite identities of their own, living in my brain somehow. Not in a “I hear voices in my head” kind of way, but instead in sort of a construction-crew kind of way. When lightning comes, that precise kind of headache and that certain kind of foggy confusion will always follow. They are a three-pronged team that works together in my brain. Doing what? I don’t know. And because I was never able to describe it competently enough to doctors or other medical professionals without sounding like a crazy person, these three entities continue to be in my life even now.