The Colgate Scene ON-LINE

The Meiklejohns met in the spring of 1984 when Susan returned to Colgate to run the parents program for the office of annual support. Scott was the director of alumni affairs for several years and before that worked in the development office.
by Scott Meiklejohn '77

The Scene asked me to write about what happened to my wife Susan Bannister Meiklejohn '83 since she was hit by a car in October 1995. I wish that Susan could tell this story herself; even after 15 months of daily involvement in her care, I feel an unbridgeable gulf between what I can understand and what she has experienced. Perhaps one day she will be able to improve on this description of her difficult journey.

Susan is in extremely critical condition. She has a severe closed head injury with evidence of hemorrhagic contusions in both hemispheres. There is a moderate injury to the upper dorsal pons and moderately extensive injury to the corpus collosum and right cingula gyrus. Her responses right now are primitive. We usually see immediate improvement once a patient is under medical care, but Susan has not improved in the first 36 hours. This is a bad sign. I think there is a 20 percent chance that she will emerge from her coma - but my gut feeling is that she will not wake up.

October 8, 1995.
Susan should have been at the post-race dinner in Kona, celebrating and hanging out with fellow competitors at the Ironman Triathlon World Championships. But after months of training, she had withdrawn from the race in September because of recurring knee problems, and she spent the weekend at home in Honolulu. On Sunday night, while crossing a street near Punahou School, she was hit by a car. It was Tuesday morning when her family and I sat in a conference room at Queen's Medical Center listening to the neurosurgeon. We didn't understand "diffuse axonal injury" or "decerebrate posturing," but there was cold clarity in his prognosis.

The first week was tense and sleepless, a marathon bad dream. It was surreal, trying to match our feeling that this just could not be happening with the sights, sounds and smells of the critical care unit - our new reality. Part of the problem was that Susan looked fine. Amazingly, she had no broken bones or internal injuries, and her often peaceful appearance in no way matched the severity of her condition. She simply looked asleep. We all thought she should just wake up.

It was frustrating to be unable to communicate with her about how she was feeling and what she was experiencing, if anything. The doctors couldn't say; we gradually learned that coma and the processes by which the brain heals itself aren't fully understood, even by professionals. For instance, the doctors said that coma meant a profound loss of consciousness, but that stimulation, especially touch and sound, was helpful.

It was confusing. Did she in fact have some awareness? Was she in pain? Could she hear me? We acted as if somehow our presence made a difference. We held her hand, played her favorite music and stayed with her around the clock. Cards and letters began to arrive, many from Colgate friends, and we put them on the wall where she could see them when she woke up. We stepped out of the room to talk about what to do if she didn't. Someone brought us a cassette tape of the Everly Brothers' "Wake Up, Little Susie" playing over and over.

October 16, 1995.
We sought a second opinion from the senior neurosurgeon at Queen's. He said Susan's chances of waking up were "one in a billion." It would take a miracle, "a tabloid story."

Seeking other medical opinions was one part of our effort to understand. I know exactly what the neurosurgeon said because writing everything down was another. I had never kept journals, but I began writing immediately after the accident. Susan was extremely health-conscious and she would want to know, someday, all that happened while she was in a coma. Looking back, it seems clear that writing also helped me adjust by giving me a responsibility - take notes, get it all down, stay on top of it. Perhaps it made me feel more in control of something completely beyond my control.

We tried to understand her injuries and treatment and to keep up with each day's new vocabulary. Tracheostomy. Gastrostomy. Mannitol. Morphine. Upper dorsal pons. Pneumothorax. Hemiplegia. Oxygen saturation. Thorazine. VQ scan. Atrial flutter. Apnea. I went to bookstores with my old golfing pards, Bob Tyburski '74, who had zoomed out to Honolulu for a visit. We collected books and articles on brain injury. The doctors and nurses were helpful in answering our questions. We learned that more than two million Americans sustain a traumatic brain injury every year. About 56,000 die and nearly 100,000 sustain injuries severe enough to result in lifelong disabilities. Was Susan going to be one of those?

Susan became stable enough to move out of critical care. She still spent hours each day with both fists up under her chin and both legs rigid and fully extended - "posturing," in medical terms. There were periods when she was relaxed. After nearly two weeks, though, not much had changed. I had an image of Susan standing on one side of a stream, flexing her knees and gauging how far it was to the other side. She would jump when she was ready and only if she knew she'd make it across.

October 24, 1995.
The neurosurgeon said Susan seemed better; "lighter" was the way he described it. However, he still felt that she probably would not regain consciousness. We discussed options. I wanted Susan to have every chance to wake up, but I agonized about her emerging from the coma only to face life with extreme limitations. Susan wouldn't want that. Not everyone shared my doubts; some friends were relentlessly positive, convinced that Susan would return to normal. They probably wondered where my faith was; I thought that kind of certainty was naïve. The conversations and feelings of those days were impossibly sad.

After most of Susan's family returned to upstate New York, her mother Barbara and I settled into a routine at the hospital. Barb had just spent years caring for her mother as various ailments took that feisty Irishwoman's health away, and I couldn't imagine what she felt as she now sat for hours at a time holding her daughter's hand. Barb was having difficulty sleeping and eating. I was happy when her sister Mary (wife of Don Beck '54) arrived for a few days.

October 30, 1995.
Our friend Bob Flynn '77 came for the weekend, and his first night in Honolulu he dreamt that Susan opened her eyes. We told this to her dozens of times during the weekend. On Monday morning, as we teased Susan that she had only a few minutes to make his dream come true before he left for the airport, she did. Her eyes were glassy, droopy and so tired-looking. She didn't seem to be registering anything. Flynnie was in tears; I was too scared and stunned to be happy. But her eyes were open. Was she trying to jump the stream?

Over the next three weeks Susan's eyes were open a little more each day, and there were other small signs of progress that in my notes appear monumental, with exclamation points. On November 5 she made her first sound, a small, soft "hmmm." On the 6th, I swore she squeezed my hand on purpose. This was tricky, since she had a reflex gripping action to anything put in her hand, but other visitors also said that Susan seemed to be responding. On the 8th, doctors took away the last of her breathing apparatus - she was breathing strongly on her own. Therapists began removing her cervical collar during workouts, and she was able to hold her head up briefly.

While Susan seemed to be clawing her way towards the surface, her mother Barb was feeling worse. In mid-November she decided to go home and have Susan's father (Dick Bannister '55) come to Hawaii for a while. I was sorry to see Barb leave. We had kept each other afloat through five terrible weeks, and it was obvious where Susan got some of her mental toughness and determination. I couldn't have had a better companion in the worst of circumstances.


November 13, 1995.
The doctor said Susan was now in a condition called p.v.s. - persistent vegetative state. He felt that she had a chance to emerge from the p.v.s., but he was not too hopeful. He urged us to move her out of Queen's, an acute care hospital, and into a long-term care facility as soon as possible.

Barring a miracle, we were just beginning a very long process, whatever Susan's progress was to be. Months or years, probably. With a lack of facilities in Hawaii and all of her family in the Rochester area, we decided to move her back east before Christmas. Susan had been very happy in Honolulu, and I finalized the moving decision with some misgivings. I wondered how angry she would be to wake up and find herself in the middle of a lake effect snowstorm instead of 85 degrees and sunshine on Diamond Head.

Susan was running a fever of 102 degrees and the holiday passed quietly. I was cheered by the arrival of my good friend Bruce Morser '77 and a box of Maine lobsters courtesy of Sissy May '77. Our Colgate friends were embracing us across the miles, and I gave thanks for that.

"Persistent vegetative state" sounds inert or placid, and it doesn't indicate the daily ups and downs Susan experienced in November and December. She was either at rest or extremely agitated, to the point where severe muscle tension often made therapy impossible. She had infections and high temperatures; she also had several days when her temperature dropped to 96 degrees while she sweated profusely. She thrashed and scratched herself so much she had to wear huge soft mittens for protection.

When she was relaxed, Susan gradually became a bit more alert. Her eyes were more focused, and she began to track people and objects - photos held in front of her, visitors coming to her room. It was inconsistent, but it seemed like she was beginning to have some awareness of her surroundings. Or was she? We talked often about how easy it was to see purpose in behavior that might be a reflex response. Perhaps we saw what we wanted to see. Still, it seemed like she was in there trying. On December 2, nearly two months after her accident, I wrote the first truly hopeful entry in my journal.

December 10, 1995.
It was a relief to head for the airport after everyone's emotional goodbyes to Susan. Ambulance from the hospital to Honolulu International. Seven seats on Northwest Airlines to accommodate Susan's stretcher and her nurse on the flight to L.A., then Detroit. Change nurses. Ambulance to a private airport in Detroit. Learjet ambulance to Rochester. Ambulance to her new facility. For all the places it could have gone wrong, the trip was quite smooth, and Susan seemed oblivious to the fact that it was 12 degrees and snowing when we finally arrived in Rochester.

Within 24 hours, it was obvious I had made a terrible mistake in selecting her new facility. It was completely inadequate for Susan's needs, and my guilt was compounded when, within a few days, I visited another hospital with excellent brain injury rehab facilities. The lessons I learned in reflecting on that decision process will stay with me for a long time. Fortunately, Susan defied the poor care and continued to improve, almost as if to say "I'm on a roll now, and even your incompetence is not going to stop me." She began to open and close her hand on request, she could move her eyes up and down, and she could move her left arm and leg, sometimes, when asked. She seemed closer and closer to the surface.

December 22, 1995.
Susan was transferred to the Brain Injury Rehabilitation Program at St. Mary's Hospital in Rochester, and the relief I felt as they took her in was all I wanted for Christmas.

Over the next month, Susan did something new almost every day. Reaching for her glasses. Holding objects. Running her hand through her hair exactly as she used to. Looking at her nails. Trying to bring a washcloth to her face or a toothbrush to her mouth. Throwing a foam ball back and forth. Making lots of sounds. Beginning to follow simple commands with a bit more consistency. Patting my hand as if to reassure or comfort me. Her eyes began to show some emotion - flashing with anger or softening when a favorite nephew came to her hospital room.

Susan still had daily periods of agitation: thrashing around, ripping at her clothes and bridging up off the bed. One day she came close to hurling herself over the bedrails, so they moved her mattress to the floor. She tore the cap off her feeding tube, spewing 400cc of liquid food around the room. She kicked herself bloody with one of several casts she wore to help prevent loss of mobility in her ankles. She hated any restraint or protective clothing. It was extremely difficult to watch these episodes, which often lasted for hours, but the doctors told us that was normal "coma-emergent" behavior. They were encouraged - we were exhausted.

We learned the vocabulary of brain injury rehabilitation. Reading books in Honolulu I had skipped the rehab chapters because I wasn't sure we'd ever get there. Now we studied dysphagia, heterotopic ossification, barium swallow tests, aphasia, ataxia, sensory stimulation protocol, and advances in coma emergence using drugs such as Ritalin and Amantadine. We marked a calendar very carefully; most books said that significant improvement slowed or stopped at about 18 months. Susan had rehab goals: "Close her eyes on command 15 percent of the time." She was riding a stationary bike and spending time each day in a standing frame. Her progress was no longer a figment of our imagination - it was measurable.

Susan and young friend Kate Bryan during an outing in New Hampshire's White Mountains .

January 26, 1996.
Three days later, the family was hit with devastating news. Susan's mother Barb had gotten sicker after returning home from Honolulu, and she went for surgery to have her gall bladder removed. When they opened her up, they found cancer everywhere. Pancreatic cancer, beyond the point of any treatment. The doctors advised her to go home and be as comfortable as possible. They wanted her back for tests in a couple of weeks, but they did not think she had much time. Scuffing down the deserted stairwell that night as I left the hospital, I unbottled weeks of frustration with a primal scream that brought security people running. What more could happen?

We decided not to tell Susan anything about her mother. Her comprehension, memory and communication were severely impaired, and she might have no idea what we were saying. If she did understand, it might slow or halt her progress. Who knew how long she would have to improve? News about Barb's illness could wait.

Susan began to propel a wheelchair with her feet. She could show her fingers 1-2-3-4-5 if I counted with her, and her sounds were closer to words. She laughed a lot. She nodded or shook her head, but very inconsistently. She turned pages in a magazine. She quickly made the transition from tube feeding to pureed foods to regular meal trays. She went to a swimming pool for aquatherapy. We made some flashcards, and she could pick the correct answers to orientation questions: "Are you in Honolulu, Rochester or Hamilton?" She would point to "Rochester." Another flashcard, "Can you keep trying, want to quit or don't know?" She always picked "keep trying."

During the second week of March, her sounds suddenly were words. Her speech was halting and slurred, just a word or short phrase. "Tastes good" and "more please" - Susan always had a good appetite. "Good morning," "don't think so" and "want to learn" - that was encouraging. "Feel OK," "starving" and "rest" - it was great to understand her needs after five months of guessing.

March 16, 1996.
Barbara Nolan Bannister died peacefully at home in Auburn, New York. We still had not told Susan anything, and Barb hadn't been able to visit Susan for quite a while. At the memorial service I was dwelling on the empty seat beside me. As if Susan's injuries weren't burden enough, how cruel that her mother should get sick, face the early end of her life, and pass on without Susan being able to give comfort or even know what happened.

April to December, 1996.
A "new" Susan has emerged from the coma into which our old Susan disappeared last October 8. Some parts of her personality are intact, especially her sense of humor, her high expectations of herself and her interest in other people. Most brain injured people also have new aspects to their personality, and it will probably take a long time to fully appreciate her new balance of strengths and weaknesses. I find this - what is old Susan and what is new? - the most intense and confusing question among many intensities and confusions.

Each rehab goal presents Susan with multiple challenges. In medical terms these all sound the same: amnesia, aphasia, dysarthria, ataxia, apraxia, anomia. Her balance and coordination are poor and she hasn't yet been able to walk. Involuntary responses affect her major muscle groups; a slight tremor makes fine motor tasks difficult. She was right-handed, but so far only her left hand works well enough to help her eat, dress, etc. Her memory is weak, so she doesn't retain much of what she learns in therapy from one day to the next. She battles apraxia, the loss of her ability to carry out movements that used to be automatic or habitual. Sequencing the steps to brush her teeth, for example, is a major challenge. She perseverates - over-relying on one answer and repeating it in response to many situations. Her emotional stamina is not what it used to be. Her speech is improved but she is frustrated by her problems in expressing the complete sentences and coherent thoughts she has in her head. She knows what she wants to say - it just won't come out right. All of these difficulties might present themselves in a 60-minute session on, say, learning how to transfer from her wheelchair to her bed.

Susan now lives in a sub-acute brain injury center in Maine. She gets around in a wheelchair and goes through five or six hours of therapy each day in remarkably good spirits. Susan is clearly relearning some old skills. She is also learning to compensate in some areas, either by finding or being taught a new way to solve an everyday problem. Therapeutic horseback riding is a new activity for her, and she plans to participate in Maine Handicapped Skiing this winter. Further improvements may make it possible for Susan to live at home without her current level of supervision and assistance. She is often frustrated but she keeps working. When she was asked recently about her strengths, she said, "Sense of humor . . . caring . . . unflappable."

I read a draft of this article to Susan and told her the closing was bothering me. "I think it's because your story isn't finished yet," I said. "You . . . should just . . . write it that way," she responded. I just looked at her, shaking my head. It was another surreal moment among many in the whole experience; when we used to edit articles and speeches she would often make that sort of suggestion. That she is able to do so once again is an amazing achievement for a "one in a billion" coma patient. I hope she has many more amazing days ahead.

My shoes are worn out from
walking down that same highway
And I don't see nothing new but
I feel a lot of change
And I get the strangest feeling,
as I'm heading for the light.

Traveling Wilburys