Declarations of Independence

Saturday, July 5: Day 49

The rehabilitation process for Guillain-Barré Syndrome requires the reconnection of nerve endings. The sensations I have are like the newborn baby who bumps into the crib side and then tries again; motor skills build one-by-one. The baby advances to rolling over on its back or to leaning on its side. My body is an infant’s, but trapped inside it is adult consciousness.

 Since I had to build these motor skills from scratch, I decided to learn how to eat with both hands equally well. For breakfast, I ate with my right hand. For lunch, I ate a plate of diced carrots, baby green peas with pearl onions, mashed potatoes, roast beef, and gravy with my left hand. Much of the meal was left in my lap.

I spent a lot of time looking at walls, clocks, fire sprinklers, tracks where curtains wrap around you, and ceiling tiles of different sizes and shapes.

Every day has a rhythm. You awake at the same time. Medications come every morning and evening. Physical therapy, occupational therapy, and speech therapy are like my university seminars-same time every day. Doctors’ visits are more irregular, and every other professional defers to their presence.

Rehabilitation has a weekly rhythm. On Sundays, patients, physicians, and staff take time off. Visitors bring food to hospitals on Sundays as if it were a picnic day. Patients grow weary of the demands of company and the uneven stimulation of a day without a fixed schedule. Mondays are for re-orienting to a new week and new goals. Occupational and physical therapists see Wednesdays as “hump” days and work extra hard to motivate their patients. Thursdays are “second wind” days, and Fridays are “push 'em hard” days, because the weekend is available to rest. Moreover, my doctors always changed medication schedules and dosages on Friday.

Hour-by-hour time is undifferentiated. Change revolves around large and small crises. Ruminating about symptoms and problems becomes standard filler. How do I get from one crisis to the next, as if tiptoeing on lily pads in a pond, trying to get to the other side without getting wet, without going under, disappearing forever into the darkness just below the surface?

There are large time spans between prescribed hospital functions. You spend this time by and within yourself. Because of the nature of my illness, I was unable to lift a book when it was propped up for me. As my illness progressed, I lost more and more of the feelings in my hands and wrists and the strength in my arms. I couldn’t even turn pages.

Patients fill their time by dealing with their disease and their medical experts. They fill the long, barren silences by focusing on their pain and what may come next. They fantasize what they might be doing with their family and friends were they in any other place. I was constantly analyzing my situation, forming hypotheses about what would be a success or a failure in the course of my rehabilitation. I was always anxious because I had nothing to fill in the spaces.

I wanted to talk with people who had seen this illness before—physicians, nurses, technicians—and ask, “How am I like those other people? How am I different?” I clung to the medical literature that defined “typical” Guillain-Barré as a fourteen- to twenty-eight-day acute problem. But my twenty-eight days came and went. And then five weeks came and went. I constructed metaphors as if I could will them to be my reality. I told Elaine and Mort Maimon that I was forty days wandering in the desert, but the days just came and went, and the metaphors with them.

I didn’t have the strength in my arms to lift a small plastic pitcher to pour a cup of water. Once the pitcher was poured, once the cup was full, I could reach across my body, extend my arms, close one hand around the handle, bring it to the middle of the bed, position the other hand as a safety support, and then carefully guide the cup to my mouth.

After fifty days, I could reach across my body and press the touch-tone of the phone. Having the phone in hand was just the beginning of a complex task requiring not only coordination, but patience and endurance. First, I had to punch a “9” to get an outside line; getting a seven-digit number came next. To access my voice-mail where people left messages of optimism and support required another set of numbers. So many times I got to the next-to-last of a 20-plus button procedure only to make an error. Patience, patience. I was amazed at how much finger, wrist, palm, arm, shoulder, back, and now facial muscles were exercised (and fatigued) in the simple act of dictating a message on a machine or responding to a phone call.

To understand the mundane phenomenology (a term from my colleague Ramsey Eric Ramsey) of patient life, I began to listen to everything I did while I was doing it.

Monday, July 7: Day 51

Mark Winograd saw me working hard at building muscle strength and endurance. Guillain-Barré Syndrome destroys the myelin sheath of the peripheral nervous system, and there is no way to train that back through exercise. Mark told me that my nerves were still unplugged and my sensory capacities deep in hibernation. I might experience heightened motor function and motor coordination, be able to eat with my right hand or my left hand, and even move my legs. But unless my neurological systems were restored, long-term problems would continue. He was reluctant to offer a prognosis. Because the nerves had not come back at all after fifty days, and because I had continued to deteriorate for so long, he wouldn’t predict the probabilities of my ever walking again. The longer I remained disconnected, the harder it would be to return to some semblance of normal functioning.

I asked how I should see myself one year from today, July 1998. He said I should imagine being confined to a wheelchair more than walking around the house, much less playing a round of golf. I had already rehearsed that image of being in a wheelchair, teaching from a wheelchair, and cooking in my kitchen from a wheelchair. That image represented a safe and even appealing middle ground compared to being paralyzed and in bed. As he spoke, I realized I had always been hedging my bets. The plain-speaking manner in which he communicated the probability of the wheelchair was chilling.

It was approaching midnight when a nurse technician, Benny, showed me the results of the career exploration tests I gave him last week. For an hour, from midnight until one, I did one of my better career counseling sessions. He explored new ways of thinking about his talents, his personality, and the realistic opportunities he possessed. He has had rich and varied life experiences as a Native American with a wry sense of humor, and a way of being strong and gentle at the same time. Over the next several weeks, I hoped to develop a career plan with him.

Wednesday, July 9: Day 53 

Vicki was the overnight nurse in charge. She administers her patients’ nightly medications and in the process spends time talking to them about their day. The unit has a mixture of early sleepers and night owls like me. Before her patient conversations, she made a raid on the kitchen.

I was her midnight recipient of blueberry pie. One of the blueberries and a piece of the crust didn’t go down easily. I choked and couldn’t dislodge it from my throat for a long time. I struggled for air and muttered in a panic: “Step-by-step, what will happen if a rescue team has to open my throat?” With a very calm voice, she assured me that I was going to be okay. “If the time comes when I need to do a procedure, I know those procedures very well, and nothing is going to happen to you.” I relaxed and finally the last of the pie crust got down my throat. Exhausted, I drifted off to sleep for awhile.

Thursday, July 10: Day 54

Linda and Kim hoisted me into the wheelchair at 9:30. The pain in my back and legs was excruciating. Linda introduced me to new equipment to develop my upper body movement and strength. When we finished, she took me back to my room and put me into bed for a nap. At 11:00, they returned. I announced that I had to be very careful with my fatigue level, because I was tiring so easily today.

The two of them looked at each other, almost as if to say, “Who should go first”? Then they confronted me and said that I wasn’t working very hard in therapy. I acted like I was on stage rather than focusing on the rehabilitation tasks. They told me to disengage from all of the people who drained my energy. They left me thinking about the challenge. I didn’t like criticism.

Friday, July 11: Day 55

Patience may be the paramount virtue for one to get through a disease like Guillain-Barré Syndrome, but anger has its place in getting through day by day.

Healing is about patience, but I am discovering that anger has its place. It burns, it fires, it heats, but you’re exhausted when you’re done. I hate this place. I don’t think I’m ever going to like it. I will be happy when I’m gone from it but for now I have to keep on and keep on and keep on. Nike’s slogan—“Just do it!”—may motivate the athlete, but it doesn’t help this professor!

Friday, July 18: Day 62

Mark told me today that it had been his judgment call to treat me with the intravenous immunoglobulin immediately, because my early symptoms were right on the borderline of predicting long-term problems. The first morning he met me, his intuition was that I would have serious impairment in my legs and ability to walk. A no-treatment alternative was strictly indicated by my partial impairment, even in the first two weeks. When I deteriorated so badly, first after the six IVIg treatments, then again after the twelve plasmapheresis treatments, and initially on the steroids, losing not only my legs and arms but then suffering the facial paralysis, his intuition was confirmed. The aggressive treatments may have staved off even worse problems than I encountered, but we’d never know. He said I couldn’t have gotten much worse than I was after 50 days. (Mario Parise told me months later that my deterioration was the worst of any of the 100 GBS patients with whom he’d worked.) Mark’s goal for me was to go home, to have the wherewithal to get out of a bed with some type of an assistive device (e.g. wheelchair, walker, canes), and to be able to move from place to place, not having to stay in bed all day. I may need the full-time services of an individual to be with me at home during the day. He talked about October 1 as a release date.

I had my first extended interaction with Marg Zielonka, a sub-acute unit nurse uniformly admired by her nursing colleagues and all of the therapy staff. Marg read the Guillain-Barré Syndrome pamphlet from the foundation, then called the University of California Medical Centers to learn about the most appropriate methods of colon care. She also talked with other therapy staffs to get some common denominators from people who had solved problems with GBS extended-care patients.

Saturday, July 19: Day 63

In the last three days, I’ve had no new symptoms, but an increasing sense of heaviness in my hands, fatigue, paralysis, and loss of some motivation even to do anything. As I try to figure out what this disease is all about, “turning the corner” seems such an empty phrase. There have been so many corners turned in the last nine weeks. I’ve grasped at so many metaphors to capture the irrationality of this experience. Through the rear view mirror, it is clear; the road ahead is always foggy.

Mark described his long-term hope for me as being able to walk again, not just being in the wheelchair. I didn’t remember until today how, in the beginning, and now, nine weeks later, he has remained consistent in this long-range goal. Kim takes one day at a time and builds me towards various possibilities. Mark has his intuition about just one—to walk again, but not knowing when or how well. All agreed that I had ten more weeks before I’d be able to function well enough to move out of bed and into some type of transportation.

My mood over the last several days has vacillated. I have been very, very fatigued because of the amount of exercise that I’m doing. It has been almost impossible to lift my arms, and my speech once again became very slurred. It was difficult to do the leg exercises. Just two weeks ago, I would have seen this as the advent of new symptoms leading to progressive deterioration with all sorts of catastrophes awaiting me around the corner. Now, it simply feels like fatigue kicking in, and I need to figure out how hard to push and when to rest.

On Friday and Saturday, I endured the most pain I have ever experienced in my adult life. After having been in the hospital for sixty days, colon care can be demeaning, invasive, and absolutely fatiguing. On two different occasions, Marg worked on me for over two hours, with tenderness and persistence to help me. There’s no way around it. There’s no way that the mental images or relaxation exercises I did could alter the pain and the effects.

Yesterday, there was a gathering of children and grandchildren and adults for a new person just admitted to the sub-acute unit. My first thought was that it must be a grandfather or a grandmother. The patient was a thirty-year-old black woman who, during her pregnancy, had had a major debilitating illness and was now trying to put together her life after having her baby. Her family was there to celebrate the new member and to be there for the new mother. She may be going through the same type of pain, the same type of doubt, and the same type of hopelessness that I experienced nine weeks ago.

I was captured by patients’ stories. How fragile is the balance between being healthy and not being healthy. How easy it is to make judgments about others based upon the behavior we see and not about their stories.

Sunday, July 20: Day 64

Nine weeks down, ten weeks to go. Pat and I thought about the implications of coming home. Should we sell the house? Should we buy a more accessible house? What’s so tricky about all of this was not knowing how I would be able to come home, what mobility I would have. We were mortgaging our future and figuring out how best to keep it open and flexible. We’d redesign the house in our own way.

Monday, July 21: Day 65

From August 1965 until May 1968, I lived in a religious community.

Our daily regimen there was like that of all monastic orders. We arose at 5:30 a.m. and had twenty minutes to shower, shave, and get ready for the day. At 5:50 a.m. we entered the chapel to have communal prayer, meditation, Mass, more meditation, and then breakfast. Breakfast was taken in silence, with a spiritual reading. We cleaned the kitchen, dining room, and the rest of the house. We put our worldly house in order after we first had put our spiritual house in order. We attended first-year college classes until noon. The entire morning was spent in contemplation and in silence. After more college classes in the afternoon, we had recreation until dinnertime. We chanted vespers together and then ate dinner. At 8:00 p.m., we recited compline and evening prayer, and by 10:00 we were ready for bed with lights out. It was a predictable regimen that fit my personality.

When I moved into the working phase of rehabilitation, memories of that daily regimen served me well.

From 5:30 to 6:00 a.m., I meditated. From 6:00 to 8:00 a.m., I did some stretching exercises, had breakfast, shaved, was washed and dressed by Alma or Penny. Physical therapy sessions were followed by a nap. The plan over the next several months was for me to be up and active from 8:30 a.m. until 1:00 p.m. without a break and without a nap. I would be allowed to nap from 1:00 until 2:30, followed by more physical therapy in the mid-afternoon to build the strength and endurance in my lower and upper body. From 3:00 to 5:00 p.m. would be time for a few people to come from the university and visit. Five o’clock was dinner;  6:00 p.m. began the round of evening visits with Pat, Gebe, Allan, Linda, and Mort. The evening was spent listening to the jazz seminar that Arthur Sabatini assembled for me. Then listening to the quiet, again.

The day unfolded as monastic life did thirty years before. There was safety and strength for me in such structured time. The business at hand was to put my body back together again, to listen carefully to its sensations and rhythms, to remain connected to family and friends.

Thursday, July 24: Day 68

I stood up for the first time. Kim and Linda hoisted me up in a standing frame, a piece of equipment with a leather bucket seat, restraints and support for my knees, hips, and arms. They set the height on 5'8", but when I was fully extended, my knees were buckled and my chest was slumped —“My God, the professor is a little bit taller than we anticipated.” For seventy days, they had seen me only in a fetal position.

Saturday, July 26: Day 70

My fatigue increased throughout the morning. After lunch, I was so, so tired that I began to feel discouraged that my energy was depleted and to fear something more serious might be taking place. But I also felt tingling sensations beginning on the tops of my legs, and radiating down to my calves, and even in the bottoms of my feet. Something was happening that was out of the ordinary.

I called Gayle, a nurse technician, into the room and asked her if she would do an experiment with me. She moved her hand from place to place on the tops of my feet and then on the bottoms of my feet from the ankle down. With my eyes closed, I told her where her hand was placed on what part of my feet. I opened my eyes and asked her whether my responses were accurate. I felt every single one of her touches accurately. I began to sob uncontrollably. Marg rushed into the room, thinking something was wrong. We repeated my experiment again. I could feel my legs and feet.

When Pat arrived an hour later, she repeated the touching and identifying game. We cried more still. I tried it again with one of the other nurses, Kim, after dinner. Same results.

For the very first time since being hospitalized, sensations had returned to my feet.

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