I Forgot to Remember: A Memoir of Amnesia

by Su Meck

  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.

  4

  You Can’t Always Get What You Want

  —The Rolling Stones

  After 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 wo
uld 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.

  Back then, I think, a broader realization was beginning to sink in for Jim: I wasn’t “getting” any of this. For example, we would take walks as a family around the neighborhood, to the post office, or to the park, and I continued to not have any idea where I was or where I was going. I wouldn’t remember walking along the exact same sidewalk, even if I had walked the route earlier in the week, or earlier that same day. I was lost in my own suburban neighborhood. But if Jim was even aware of this, he surely didn’t know what to do about it.

  My lightning strikes continued, with a frequency of one every two or three days. Jim just thought they were caused by some sort of sensory overload that would overwhelm my nervous system, which in turn would trigger a shutdown. Almost as if I had blown a fuse, I would collapse and be unresponsive for several minutes.

  I think Jim probably sensed that I needed help, but he was back at work trying to make up for all the time he had missed earlier that spring and summer. Plus, the neurologists kept telling him that there was nothing wrong with me. Jim’s parents offered to pay for a live-in nanny to help with the boys, which might relieve some of my stress. Jim asked around and soon hired a woman who was probably in her early to midthirties. And for a few weeks she did, indeed, keep the boys and me alive, keep the house from burning down, and most likely she prevented several major catastrophes. However, she was a devout Christian, and when she came upon Jim’s extensive stash of pornography, she told him she could no longer work in our home.

  Suddenly Benjamin, Patrick, and I were on our own once again. I would wake up each morning with no memory of what had occurred the previous day. I recognized Jim and the boys simply because I saw them every day, but I would have no recollection of what any of us had done the day before, or what the plan was for that new day. Each day the world beyond my front door was an absolute unknown. Jim says that our family was full of Lord of the Flies incidents, in that he never knew exactly what he would come home to after work each day. Would I be there with Benjamin and Patrick? Would we all be gone? Would the boys be playing together in the backyard all by themselves with me nowhere in sight? Would I be there, but have no idea where Benjamin or Patrick were? Would the bathtub be overflowing? Would the oven or stove be on? Would the car be running in the driveway? I am terrified when I think about what that must have been like for the boys and me. I honestly do not know how we all survived those first days, weeks, months, and even years.

  Part of the key to our survival may have been that my life quickly became governed by a very specific routine and a precise daily schedule. Most people find a certain amount of comfort in their day-to-day habits, and I suppose we all have a particular order that we like to do things in in our daily lives, whether it is a certain morning routine, or when, where, and with whom we like to eat our meals during the day, or our daily work schedules at the office. On the other hand, most people don’t have a serious meltdown or mental collapse if they sleep through their alarm one morning, or if they have to push their lunchtime meeting to the following day. I would freak out about far less. If it was time for the boys and me to take our daily walk, and it was suddenly storming outside . . . I would be lost, and not know what I was supposed to do instead. If we lost power in the house during the time my schedule allotted for doing laundry, I would begin to sob. My daily routine was vital because it was all I knew. We had a gigantic wall calendar filled with pictures and stickers. The calendar carefully scripted out activities for the kids and me, and I would consult it to find out what we were supposed to be doing from one hour to the next. If a new task was introduced and I carefully worked it into my routine, I could repeat it and remember it. But God forbid I should ever reach the end of my to-do list before the end of the day. Without my list, I would be totally discombobulated. I wouldn’t have any “next move.” The opposite was true as well. If Jim came home from work and I had not yet completed everything that was planned for that day, I would again become totally distraught. Jim understands now that back in the early years after the accident, the notion that I would actually have a say in what I could do simply didn’t occur to me, and even if it did, the idea may have terrified me.

  My mom wanted desperately to help out somehow, as well as give Jim a break. But my younger brother, Mark, was still living at home and was not yet driving. Mom felt like she couldn’t very well desert him to come to Fort Worth to look after me. Instead it was decided that Jim would drive Benjamin, Patrick, and me to Houston to stay with my parents for a week. My parents now feel incredibly guilty about how little they understood of my new reality. My mom says that all she really knew was that I had this hea
d injury and that I had trouble remembering things. The letters I sent her looked as if a first grader had written them, “all phonetic misspellings and shaky script on lined paper,” but still she and my dad were not overly concerned.

  It is highly unlikely that I in fact recognized either of my parents when I climbed out of the car in their driveway. But because Jim had prepared me for this particular reunion, I was able to greet them both with a sort of affection and warmth. Even so, my parents say that they noticed immediately how much I had changed. They had known me as the family troublemaker, loud, defiant, and stubborn. Now my personality was completely different. My dad was surprised at how cooperative and friendly I appeared, nothing like the person I had been even a few months earlier.

  Mom thinks it likely that I woke up every morning that week in Houston unsure of where I was or why I was there. I must have been terribly confused to be yet again in a new, unfamiliar place, with unfamiliar people. But Mom thinks I would eventually hear the recognizable sounds of Benjamin and Patrick, and then I would slowly find my bearings, and greet my parents as if nothing was amiss.

  Not that everything went smoothly that week. Mom remembers taking me to a fancy luncheon and fashion show at a ritzy yacht club in the upscale Houston suburb of Clear Lake. There were white linen tablecloths on the tables, and waiters in tuxedos. The only person I vaguely knew at this affair was my mother, but she recalls that I “did a good job of making conversation and acting normal.” In the car afterward as we were driving home, Mom claims I looked at her and said, “That’s the dumbest thing I have ever done.” Mom thinks I had no clue as to what had just happened. Or why. Why on earth had we gone to this place and eaten this meal? After all, it is entirely possible that since leaving the hospital I had never eaten anywhere except at a table in a house.