by Su Meck
Later in the day, Dr. Guzman seems to reach the opposite conclusion. “She may need more prolonged rehabilitation efforts than I originally thought,” he writes, “and rehab floor is looking more necessary every day she doesn’t achieve a minimal ADL status. Will discuss.”
An occupational therapist gives me a series of tests. “Patient especially has problems with visual memory,” the therapist writes, “but also appears to have problems with spatial orientation and visual discrimination,” and my response time is “very slow.”
A speech therapist describes me as “alert and cooperative” but notes “she rarely meets eye gaze, frequently averting eyes, particularly while forming responses to test questions.” The therapist continues: “Patient has earned college degree in English. (What? Where did that come from?) She expressed frustration about feeling like a first grader in her responses.” (I wonder if I actually said “first grader.”) In one test, I fail to remember any of three words a minute after they are shown to me. I also fail a test of judgment and reasoning. That afternoon, a nurse writes, “Patient asked to rate headache on a scale of 1–10, with 10 being the worst. Patient said headache was a 10.”
Friday, May 27
A therapist writes that I “complain of dizziness,” but I am able to sit for ten minutes without overwhelming nausea, which shows improvement. When the therapist gives me a brush, I am unable to use it on my hair. “She said it felt like the first time she had ever held a brush,” the therapist writes. I am also unable to “demonstrate how to drink from a cup.” The therapist concludes, “I suspect motor planning problems, or an inability to execute an unfamiliar sequence of movements.”
Dr. Garcia notes the need to ask approval from our HMO for my admission to the hospital’s rehab unit.
Monday, May 30
My pupils have returned to their proper size. I attempt to sit in a chair but become faint, and my blood pressure dips. I am helped back to bed.
A nurse, apparently new to my care, notes, “Light hurts eyes. Requests that it be turned off.” A different nurse, also new, writes that I am “demanding” and that I require “frequent teaching and encouragement. Calls for nurse to raise and lower head of bed.” The nurse seems not to connect my need for “teaching” to my memory loss.
The next day, I was transferred to the hospital’s rehabilitation floor. In the rehab unit, there was much talk of therapy and goal setting. To cope with my memory problem, the leader of my treatment team told Jim, “Bring in things your wife would recognize.” Jim brought in my stuffed bear, Byron, a boom box, and some cassettes of music he thought I would remember: Pink Floyd, the Beatles, the Who, “classic rock things that you’d grown up on and loved.” It appears that I enjoyed the music, but I didn’t remember it. Later, Jim was instructed to fetch my bicycle. My recovery had progressed to the point that the therapists wanted to work on my balance and bilateral movement. Two very large interns and I went up to the roof of the hospital, and I “rode” my bike, with the interns holding on either side to catch me if I fell. Somehow I had not forgotten how to pedal a bike.
“Even with the paralysis, you still had a lot of muscle tone,” Jim recalls. “You were professional-athlete-grade fit. And your body seemed to have retained its sense of what was there. It was almost as if maybe the muscle memory wasn’t completely affected by the accident. And once you could tap into that, you progressed. Quickly. You were released from the hospital in just a few weeks, not eight months like I had been originally told.”
That’s a rosy picture of how things went, but it may not be the whole story. Jim says that within a day of my relocation to the rehab floor, he arrived at my room and found me “in a heap on the floor.” I had fallen out of my chair. “There were instructions. You weren’t supposed to be left alone in a chair,” Jim recalls. “You weren’t supposed to be left alone at all when you were out of bed.” Jim complained loudly about the mishap. His rising dissatisfaction with my care prompted several notations in the hospital records. Did this incident factor into the decision to send me home only a few days later?
In the hospital after my injury with Benjamin on his second birthday, celebrated on June 2, 1988. My bear, Byron, is something Jim brought from home in an attempt to trigger my memory.
After Barb and Scott left, Jim called my mom again. “He said, ‘They’ve gone. I need help.’ ” Mom drove the five hours up from Houston to Fort Worth again over Memorial Day weekend with Mark, my younger brother. Mark says he has no memory of this particular trip.
Jim, Mom, and Mark visited me in the rehabilitation wing. I still didn’t recognize Mom; but she thinks that I recognized Mark, the sibling to whom I had been perhaps closest in the years before I met Jim. “You didn’t know me, you didn’t know Jim, you didn’t know the kids, but you seemed to know Mark when he came in,” Mom recalls. I wonder if I had been told he was coming, or if recognizing Mark was one of those rare times when some freakish “gift” of a moment of meaning was given to me. Talk during that visit turned to my childhood, and suddenly some old memories of mine seemed to break through.
Mom says: “I can remember talking to you and, out of the blue, you started talking about Catcher in the Rye. And I said, ‘That’s a book you read in high school.’ You even remembered the name of the high school teacher that had assigned the book. And then just as quickly, it was gone.”
My Catcher in the Rye moment was the first of just two instances in which I would reclaim memories from my old life, two fleeting glimpses of a lost past. Both would prove short-lived. “I thought, ‘Oh, well, things are beginning to come back,’ ” Mom recalls. “I didn’t realize that she would have these little instances where things would pop in and then be gone forever.”
Much of my stay in the rehab unit followed a similar pattern: moments of seeming progress, followed by sudden relapses.
Tuesday, May 31
In the rehab admission papers, Dr. Garcia writes, “The patient has been confused and disoriented. She cannot walk. Her left side is weaker than her right side. She also complains of headaches.” He notes, “Sitting balance is poor.” He recommends physical, occupational, and speech therapy and states, “The patient will be in our head injury program.”
Turning me over to the rehab team, Dr. Guzman later states that my condition has improved somewhat during my hospitalization but that “following 2–3 days of modest gains, she has plateaued.” My “short-term memory is poor,” he writes, “but this improved during her hospitalization and long-term memory seems fairly unaffected.” I am “oriented to name, place, [and] date.”
In summary, he writes, “Since she is young and the impact of her disability would be great on her family . . . it has been decided that an aggressive, acute rehabilitation stay is in order with as positive an attitude as possible to be generated for the patient.”
Dr. Guzman notes, “plans for child care need to be made for a 4–6 week period to allow adequate physical therapy/occupational therapy trial.”
Someone types a modest checklist of goals for my therapy: sitting and standing balance; wheelchair mobility; gait; communication skills; swallowing. Another writer notes that I might benefit from “dim-lit room, low noise, calm environment.”
I am told to keep a logbook to aid my memory. Can I read? Can I write? I am assigned a case manager, Penny Perry. Penny meets with Jim. After the meeting, she notes, “Husband would like to be very involved in wife’s rehab program.”
Wednesday, June 1
In the morning, I have some sort of breakdown, triggered, perhaps, by awakening in an unfamiliar room, or by Jim’s return to work and resulting absence from my bedside. Penny Perry, the case manager, notes: “[Jim] initially expressed concern that his return to work caused her agitation. Mr. Meck also, somewhat hesitantly, expressed concern for financial needs and his need to return to work, but [he is] concerned that he should be with his wife. Reassured often that Mrs. Meck is well cared for, and probably environmental c
hange, i.e., move to new room, new faces, change in routine caused rise in agitation. After Mrs. Meck regained her composure, we discussed uses of her journal as a communication device.”
A psychologist meets with me and Jim. He notes, “Patient was acutely distressed because husband was not here this A.M. . . . Patient extremely dependent on husband and expressing ‘I don’t understand.’ Obviously she is having marked difficulty comprehending emotionally charged and abstract information. It will probably help to limit [the] number of different staff working with patient. Familiarity with fewer staff would probably increase rapport and cooperation and reduce agitation and resistance.”
Someone notes that Jim has requested “something other than what was served on menu for patient at lunch. He said the transfer to rehab unit has made patient very disoriented and confused, therefore she was not able to eat.”
Paula McMillen, a medical social worker, takes a psychosocial assessment of me. Both Jim and I are interviewed, but I am “medicated and somewhat confused,” so most of the narrative comes from Jim.
McMillen states, “Patient has a mother with whom she does not have a good relationship, an older sister from Illinois, who is presently here visiting, a brother in Ohio, and a sister in Virginia.” She also refers to a nonexistent “youngest sister,” whom Jim describes as “lost.” Where did the story of this lost sister come from? Did Jim invent her for some reason? Or was this just another case of patient mix-up and medical record confusion? It’s discrepancies like this one that leave me struggling with feelings of fear and frustration about my care in the hospital.
A nurse notes that I have begun making entries in my journal to help my memory. I would give anything to see what I was able to “write” in my supposed “journal.” My cynical theory is that there was no writing, and no journal, but because there was something in my chart (or somebody’s chart) about it, the nurse felt the need to comment on my progress and keep this dream alive. Jim does remember some sort of a “word book” that was kept for me, but he doesn’t remember exactly how it was maintained. However, he thinks it was highly unlikely that I personally wrote down anything of substance while in the hospital. He vaguely remembers my practicing writing out my name on large pieces of handwriting paper, as well as reading a few pages of Dr. Seuss’s Hop on Pop out loud to him a day or two before being released.
Thursday, June 2
Dr. Guzman suggests “that there is a nonorganic”—i.e., psychological—“component to patient’s complaints,” and that “psychological support is our single best approach to maximal improvement.”
This notation marks one of the first references to the doctors’ growing frustration—if not outright doubt—about my condition, a source of unending upset and stress for me for years to come.
Jim and I somehow celebrate Benjamin’s second birthday in my room. A nurse notes: “Quiet birthday party for 2-year-old son OK’d in patient’s room. Sits for no longer than half hour.” Doctors and therapists list many short-term goals for me:
Dressing with minimal assistance
Carry-over of instructions and knowledge from A.M. to P.M.
Have patient maintain sitting balance for over five minutes
Increase memory for daily activities
Improve verbal expression
Decrease agitation
Friday, June 3
A physical therapist notes, “Patient stated she feels like she is falling when she is sitting up.” I work on my sitting balance. The therapist notes, “balance zero.”
Dr. Garcia notes I am taking medication “for agitation.”
Monday, June 6
I tell a therapist I fell out of my chair two days earlier, on Saturday. The therapist says I tell her that I: “decided [I] had to start working harder on [my] problems.”
The therapist makes another checklist of activities for me to work on:
Tandem walking [with an aide]
Braiding
Walking on toes
Showering
I complete a “bike evaluation” and a “Jazzercise activity.”
Jim and I meet again with Paula McMillen, the medical social worker. She notes, “Patient has made remarkable progress since last week—is walking, and has shown significant improvement in memory, coordination, etc.” She also hints that Jim is growing impatient: “Mr. Meck insisted on accelerated therapy based on her exceptional progress over the weekend.” She approves an evening pass for the following night, probably for Jim and me to have dinner together at home. I have begun recreational therapy on my bicycle and occupational therapy in the kitchen. The social worker notes, “Patient and husband very eager for discharge by end of week.”
A nurse notes “reassessment of reading and cognitive skills due to significant change in patient’s status over the weekend. Both areas [now] appear to be functional.” Was this perhaps the day when I was practicing writing my name and reading Hop on Pop?
Tuesday, June 7
I tell a therapist “I am feeling good today.” However, she notices and writes that my “patience with everyday activities is very short.”
More testing. More results: “Patient manifested mild word-finding difficulties as well as mild to moderate mental calculation difficulties.” The psychologist, David Wilson, prepares another checklist:
Attention: severely impaired
Language comprehension: severely impaired
Memory: moderately impaired
Calculation: moderately impaired
Abstract reasoning and judgment: severely impaired
A nurse notes, “Patient very angry and agitated at times by external stimuli. Patient and husband require teaching re safety, limitations, medications.”
Wednesday, June 8
Hospital notes suggest that Jim and I spent the previous evening home with family. A therapist writes, “Patient stated she became frustrated at home last night, too many people in the room.”
I take (and apparently pass) a “safety evaluation”: crossing a street, walking in a crowd, and riding a bike. On the bike evaluation, I start and stop on command and weave left and right to avoid objects tossed in front of me.
Thursday, June 9
Overnight, my condition seems to have improved dramatically. A chorus of upbeat reports signals my rapid recovery. My discharge is scheduled for the following day. A therapist notes, “Patient has shown remarkable improvement in all areas. . . . Previous cognitive deficits appear resolved.” Another therapist concurs: “Patient showed a dramatic change in status over the weekend [an odd statement, coming on a Thursday] and upon reassessment, all skills appear to be within normal limits, certainly functional for her to return home.”
Dr. Garcia adds, “Patient is not agitated anymore.”
My social worker notes, “Patient has met almost all her goals in a very short time, but still may have some mild cognitive deficits. [Personality tests] showed a lot of denial, probably related to head injury.” For outpatient follow-up: “No therapies recommended, but psychotherapy is recommended.”
Friday, June 10
“Home today,” Dr. Garcia notes. “Patient and husband instructed about safety precautions. Dr. Wilson, the psychologist, meets with Jim and me to discuss “the benefits of supportive therapy. They declined, but said they would call if they felt the need. They [probably Jim] indicated that counseling was not a ‘drug’ that worked with them.”
Another battery of tests. I am given the Wechsler Adult Intelligence Scale test and show an IQ of exactly 100 in the final write-up, although buried in the middle of the report is another reference that puts my IQ at 70. On a test of visual-spatial skills, I perform at the level of a six-year-old. And on a personality test, I respond “in a defensive manner, attempting to present herself in the best possible light.”
The psychologist notes my emotional fragility: “She has resources available to handle personal stresses of everyday living, but probably not the after
math of a closed-head injury. She has strong need for affection and a tendency toward ill-considered, impulsive behavior. There are definite visual motor deficits which are exacerbated by her impulsivity.” He concludes, “Patient and family’s decision to not accept outpatient services is a negative prognosticator with regard to her overall recovery.”
A nurse restates that my condition has improved “significantly” since the previous weekend. At this time my “cognitive and communication status are functional enough to return home.” She writes, “No further speech or cognitive therapy [is] recommended on an outpatient basis.” The nurse notes that I tell her I will have a nanny to help with the children at home.
Dr. Wilson Garcia writes an upbeat dismissal summary: “On admission to the rehabilitation unit, the patient could not walk and needed assistance with all of her activities of daily living. She was complaining of double vision and photophobic. The patient was started in our head injury program. She made a remarkable improvement to the point that when she left the hospital, she was walking by herself and doing all of her activities without any assistance. On admission to the rehabilitation unit, she was at cognitive level 4, and when she left she was at cognitive level 8.” (Dr. Garcia is referring to the Rancho Levels of Cognitive Functioning Scale, used to assess patients who emerge from a coma. A score of 1 is comatose. A 4 is “confused/agitated.” An 8 is normal.) “This patient made a remarkable improvement,” Dr. Garcia writes, although she was “agitated and she needed medication for that.” Thus improved, he wrote, “the patient went back home with recommendations for outpatient psychotherapy.”
And just like that, I was on my way home.
3
I Don’t Remember
—Peter Gabriel
According to Miller family lore, I took a trip to Niagara Falls with my family when I was three. Walking along the rim, I heard the falls roaring in my ears and felt the mist pelting my face. Since I was so young, my parents didn’t yet know just how bad my eyesight was. I could feel the mist and hear the roar, but couldn’t see where those things were coming from. I grew frightened, and that fear swelled into panic. Suddenly I broke away from my mother’s grip and dashed out into the street. Luckily, my parents grabbed me and pulled me out of the road before I could be hurt.
