Spaulding Rehabilitation Hospital, Charlestown, Massachusetts
On May 28, 2014, exactly one month and three days after my accident, I was delivered to a private room at the Spaulding rehabilitation Hospital in Charlestown, Massachusetts. Ranked in the top 10, it is one of the country’s best rehab hospitals. Certainly my first glance corroborated that. The entry space was gigantic, more like an upscale hotel than a hospital.
The building is a marvel of modern hospital construction. Everything is light, airy, lots of glass, lots of shiny metal and gleaming floors, high ceilings and low, sophisticated seating at the foot of floor-to-ceiling murals of aquamarine abstracts meant to connect the interior with the Charles River waterfront outside.
Spaulding was only a year and a half old when I got there. Its location couldn’t be better. From the window of my room I could see the Zakim Bridge in one direction and slightly to the left the topmasts of the USS Constitution. One day I was able to watch from a spectacular window-encircled dayroom as the ship was being turned for the last time before a major overhaul that would take three years.
The body-rebuilding equipment was to my unpracticed eye top-of-the-line. Most of it was housed in a three-story-high atrium-like gymnasium. The windows were floor-to-ceiling, and gave the patient a landscape view of the outdoors. This was deliberate, of course, in an effort to rehab not only the patient’s body but the patient’s mental outlook. I have never seen a hospital so invitingly designed.
Even now I’m not sure how I came to be there. In the beginning they had refused to take me as a patient. Perhaps it was my age and the prospect of not being able to do much for a 78-year-old man. Whatever the reason, the initial request to take me on as a patient was turned down. Ron Hirschberg was unwilling to take no for an answer. Somehow he got the decision reversed. As it turned out, it was a critical decision, even though the six-week stay there—a time period predetermined by the insurance company--did not improve my condition.
My most enduring memories of Spaulding are of the other patients. One was a powerful looking young man in the room next to mine. A motorcycle accident had rendered him paralyzed from the neck down. He moved his wheelchair by blowing into a tube. Was he a harbinger of things to come for me? How resourceful engineers have been in tailoring machines to the failings of their users, I thought. What will my machine look like? Despite the fact that he was so young and so handicapped, he was upbeat, optimistic and looking forward to a future with his wife and child. Maybe I will be able to take a leaf from his book.
Another young man, wheelchair bound, cleanly dressed, clean-shaven, wore the healthy look of the boy next door. He was also completely immobilized, his mind trapped inside an inert body. He had a companion, a big beefy man who looked more like a bodyguard than an attendant. It would drive me mad. Perhaps it already had him.
One day I caught a glimpse of someone in the most complicated wheelchair I’d ever seen. It looked like a prop in a Star Wars movie. He, too, seemed completely paralyzed. I only saw him for an instant as he was being wheeled into his room. He was in a semi-recumbent position. He had a thick black beard and long hair that covered his head like a thicket. He looked like a feral child who had just emerged from the forest. Just before he disappeared our eyes met. It was that meeting of eyes that burned the scene into my memory. I never saw him again. I couldn’t ask about him. No one would tell me. The ethos of the floor was privacy. Each of us had his own private cell, like so many wounded monks.
Two rooms down from my own was a door that was always closed. One of the staff told me the occupant was very well-known. She wouldn’t say another word. On the other side was a patient I never met and was just as happy not to. I often heard him yelling at his spouse over the telephone, although he didn’t keep his hostility confined to the family circle. One night when I was calling for help, he told me to shut up so he could sleep.
Some admissions were too spectacular to keep under wraps. Some were even interviewed on TV. One day a group of women was brought into the hospital. They were part of an acrobatic team that had been performing with the Ringling Brothers Barnum and Bailey Circus in nearby Providence, Rhode Island when a steel carabiner clip holding the apparatus they were dangling from snapped. Eleven women plunged twenty feet. No one died, but two of them suffered severe spinal cord injuries that brought them to Spaulding.
I caught sight of one of them from my room where I lay quarantined. It was just for a moment. But it was long enough to break your heart. Friends hovered around her like robins around a crust of bread. I guessed she was the young woman who said, “My dream was to be a star performer. Now my dream is to get up and walk.”
When I entered Spaulding, I had no reason to believe that I would ever be anything more than a talking doll. I was unable to move. The force of gravity kept my arms pinned to whatever surface they were lying on. I couldn’t move my bowels on my own. Early on in my stay I managed to wiggle a few toes on my left foot. It was a cause for celebration, as if I had medaled at some Olympic trial.
My frame of mind certainly colored the way I thought about the patients I caught sight of. At that point I saw and remembered them all as through a glass darkly. There was no sense of community, of everyone being in the same boat, a sense that whatever bedeviled us, we were all in it together. When Nancy and I happened to drive by Spaulding a year and half later, all I could think of was the misery inside.
Spaulding also taught me the hard way that we live in a virtual sea of bacteria. When I entered Spaulding, my intestines were riddled with Clostridium difficile, more familiarly known as C. diff. This spore-forming bacterium can live in the (picturesquely named) “flora” of your gut and you will never know it’s there. Or else it can kill you. The mechanism behind that rampage is simple. Any serious operation makes you the target of a barrage of heavy-duty antibiotics. Unfortunately, those wonder drugs can kill all the bacteria in your gut, the bad and the good, including the bacteria that keep C. diff in check. This gives C. diff the chance to take over. Think of it as collateral damage. Neither the folks at MGH nor at Spaulding were aware of the usurpation going on inside me. Uncontrollable diarrhea was the heads-up.
Spaulding must have felt that MGH had sent them a Trojan horse. After just one day the symptoms appeared. Spaulding was forced to quarantine me. I was so sick that when therapists came into my room to do what they could, I would fall asleep in the middle of whatever it was they were doing. The long and short of it is that for three weeks I was just taking up space instead of getting the kind of therapy Spaulding is famous for.
The treatment for C. diff involved a drug called Flagyl. It killed Clostridium well enough, but it also fostered the growth of a fungus called Candida albicans, a condition known as thrush, that coated my tongue with a thick milky white substance that had the consistency of Greek yogurt. At least twice a day someone scrubbed my tongue with a medication soaked toothbrush. It was like shoveling snow. The disease destroyed my appetite. I couldn’t stand the sight of food. It was a constant struggle to get me to eat anything. My albumin numbers were unhealthily low; 2.2 instead of a normal 3.0. My body needed protein badly while I couldn’t stomach anything. I found that if you put whatever was being served into a soup, I could just barely swallow it without retching. So Flagyl was killing two birds with one stone—Clostridium and my appetite. There is no such thing as an unqualified good.
The unfortunate consequence of all this was that by the time Spaulding had gotten C. diff and thrush out of me, it was time for them to look seriously into the question of getting me out of Spaulding. The reason was the “length of stay” issue. My time at Spaulding was to be paid for by Medicare. The problem was that Medicare would only pay for a six-week stay.
The medical profession traditionally takes an oath, some version of the original Hippocratic oath, whereby doctors swear that they will “…apply, for the benefit of the sick, all measures which are required…” Suddenly I realized a chilling addendum was in play: “…apply, for the benefit of the sick, all measures which are required… [so long as the money holds out].”
From the point of view of fiduciary responsibility, Spaulding was required, the Hippocratic oath notwithstanding, to evict me just as they would a tenant who could not pay the rent. As a patient in the early throes of a catastrophic injury, it was hard for me to view what was happening to me as anything other than a breaking of that oath. I had come face-to-face with the US healthcare system the hard way. When the needs of the patient are weighed against the needs of the balance sheet, the balance sheet has a very loud voice. For example, last year according to the Census Bureau, out-of-pocket medical spending, including the cost of health insurance, pushed 11.2 million Americans below the poverty line.
While Spaulding is a not-for-profit institution, the bottom line lurks behind everything like an éminence grise. In fact, the organization of which Spaulding is a part, Partners HealthCare, has enough market power to negotiate insurance company payments that are significantly higher than other payouts in the Bay State. It may be nonprofit, but it is an organization with a bottom-line ethos.
This shows up in unexpected ways. When I arrived at Spaulding my bladder was simply not working. That meant that I had to be artificially drained. The procedure, called catheterization, more informally “straight cathing,” was performed once every six hours. It was done by inserting a flexible tube through my penis into my bladder. That was enough to stimulate voiding.
One night my nurse was preparing to straight cath me. Before he started, he gave me an informative talk on the relative prices of the two catheters that he had in hand. One, a self-contained, self-lubricating kit cost only $1. The second, a rubber tube with a bend at the end to accommodate my enlarged prostate, cost $10. He mused on how expensive it was for the hospital to use the costlier catheter.
“If you have to be straight cathed every six hours,” he calculated, “that would be $40 a day just for one patient.”
I was able to do the math but I wasn’t sure about the message. Was he telling me that for the sake of the bottom line I should opt for the $1 product even though I had an enlarged prostate?
The linkage between state-of-the-art care and cost super-sensitized me to the reality that all this state-of-the-art-ness was writ on water (read ‘money’). That is, it would disappear once the insurance ran out. All right. So what did I get for my money? I was taught to operate a wheelchair. It was slow going because I was afraid to crank up the speed. My instructress would walk me around the corridors as if we were in a funeral procession. In order to get into the wheelchair, I had to be transferred from my bed with the aid of an overhead lift. This meant that I had to be put into a harness. And this meant that I had to learn the technique for getting me into the harness while lying in bed.
The routine involved furling the harness lengthwise, then rolling me over on my side. The harness was tucked under me and I was rolled to the other side. What was all this in aid of? I was told that I needed to know how to do it before I left Spaulding so that I could instruct my next caregiver who might very well not know how to do it. This only added to my sense of how precarious my life had become. I was being readied for departure and told, between the lines, that where I was going they may not know what they’re doing.
I was instructed on how to sit upright on the edge of a platform about a foot and a half high. I couldn’t do it. As soon as the therapist let go of me, I started to tip over like a sailboat in a gust of wind. I was taken to an electric bicycle that would administer a shock to help me pedal with my arms. Some kind of computerized profile had to be set up first. But it never came to anything. For some reason the bicycle was new. Setting up the profile was tricky. I was used to help the therapists master the device, something I was quite happy to do. However, the profile didn’t take. So I didn’t use the machine.
One day my therapist took me to a machine that looked like a huge seesaw. I was strapped into a heavy white harness that worked like a straitjacket. The idea was that since I couldn’t move my hands and arms, they had to be tied down to avoid injury. The harness was very tight around my lower abdomen. This machine was going to slowly raise me to an upright position. The purpose was to re-acclimate my body’s blood pressure so that I could tolerate a vertical position and to begin to put weight on my legs. Because I was wrapped up like something purchased at a fish counter, I couldn’t move. My immobility terrified me. The machine was turned on. I slowly tilted upright. The harness pressed against my lower abdomen. On the spot I had a bowel movement. The operation came to an abrupt halt. I was unstrapped, taken back to my room and cleaned up.
“Don’t worry about it,” the therapist said. “It happens all the time. We even call it the BM machine.”
That didn’t really help. I saw it as a failure. On another occasion I was placed on a tilt table that was far less elaborate. No straightjackets were required. My therapist slowly raised me upright. About a third of the way up I had to ask her to lower me. I felt woozy. That showed me how much I had deteriorated since the accident. Obviously, there was a lot of work ahead.
I remember one session when I was being taught to feed myself tomato soup. I was equipped with a leather glove-like contraption that had a teaspoon attached. I could just about move my arm in a small arc in front of my body. None of the soup reached my mouth. Instead there was a red river that flowed down my bib from my chin to the cup. It was clearly useless, this feeding business. Why did it have to be a teaspoon? Nobody eats soup with a teaspoon. Why did it have to be soup?
I asked my therapists to think outside the box.
“How do the astronauts eat?” I asked.
No one took me seriously. I had the sense that they were trying to give me minimal skills before the time came when the “length of stay” clock ran out and I would have to leave. Instead of matching what I was capable of at the time, I was given tasks that set me up for failure. I’m sure that wasn’t the intention, but that’s how it felt. It was that damn “length of stay” clock ticking in everyone’s ears. They had to run through their boilerplate checklist of what I could have reasonably been expected to accomplish there before I had to leave.
My biggest worry in the early days at Spaulding was about being a burden to Nancy. This loomed especially large when it came to bowel movements. I couldn’t possibly see subjecting my wife to a regimen of bowel management for her husband. It would turn her from a life partner into a caregiver. That seemed intolerable to me. Although it was much too early, I began to contemplate drastic measures, like a colostomy bag. I hadn’t realized that it was a major operation. Also I had been told that it was reversible. I thought I might explore the option. So when one of the ranking doctors came in to see me one morning, I asked him what he thought of a colostomy.
“I think it’s a great idea,” he said unhesitatingly. “Shall I schedule you for an operation now?”
He took a step toward the door. That step took me by surprise. I had expected him to say something like “Why do you ask?” or “Let’s go over the pros and cons.” Instead he did that quickstep toward the door.
After he left, I raised the question with two of the nurses who tended me and with whom I had a friendly relationship. Both of them were adamant about it being much too early. They said that I needed much more time to see which way the wind was blowing. They spoke to me the way I had expected the doctor to. They also thanked me for seeking their advice. This was the moment when I first realized the importance of the care coordinator. The nurses’ reaction to my asking them made me feel as if I were the care coordinator. Indeed, why should I be raising questions? Why wasn’t someone who knew what he or she was talking about doing it with me?
And then there was the bean-counting mentality A kind-hearted Spaulding dietitian conspired with Nancy to increase my protein intake. The dietitian determined that I ought to have at least 104 to 134 grams of protein a day. Since she herself had suffered from thrush as a result of an extended hospital stay, she knew exactly what hav Himoc Flagyl had wrought on my system. She ordered three tubes of Pro-Stat a day for me, one with each meal. The supplement had a slightly lemony taste and could be unobtrusively squeezed into anything from fruit juice to pudding to mashed potatoes. It seemed like a perfect way to improve my protein level despite my abhorrence of food.
The problem was that the Pro-Stat was rarely there in the morning when Nancy came to visit. So she took to asking morning nurses where it was. They said that it was under lock and key and difficult to get at. To make matters worse, every time they took out three tubes of the supplement they had to enter that in a computer. Getting Pro-Stat out of its cabinet was like pulling teeth.
All of this reluctance surfaced even though the daily Pro-Stat order was on the record. Nancy found a workaround. With someone’s help, she got hold of a supply of protein supplement that had fallen off everyone’s radar, packets of protein powder that the hospital no longer used. Nancy smuggled them into my food when no one was looking.
With all its state-of-the-art rehabilitation equipment Spaulding skimped on the things that would have made me feel cared for. Consider the nurse’s call bell. This was a device that every patient had to have at hand if ever he or she needed immediate attention. Once you are left alone in your room if, like me, you can barely move a muscle let alone raise your voice, the call bell is your only connection to the world outside.
In my case the call bell took the form of a long beaded bendable tube that looked a bit like an Indian peace pipe. It had a mouthpiece that you blew into. That sounded the bell. The device was fixed to the side of my hospital bed with an ungainly plastic clothespin-like clamp that was constantly falling off with a frightening snap that sounded like a rifle shot. The mouthpiece was positioned close enough to my lips so that I could reach it by lifting my head slightly. My being unable to raise my arms even an inch necessitated all of this.
The problem with the blowpipe call bell was that at the beginning of the night I was able to reach the open end, but as the night wore on the pipe gradually sank toward my chest hopelessly out of reach of my lips.
One night around 2AM I awoke to find my right hand jammed under my chin. A muscle spasm must have put it there. Muscle spasms are a constant companion of spinal cord injury. I certainly couldn’t have got it there voluntarily.
However, my hand got there, I remember that it hurt like hell. My wrist was cocked at a painful angle. I lifted my head as much as I could to seek out the business end of the pipe. To my horror it had sunk onto my chest. I lay back and tried everything I could to dislodge my hand. It was impossible. The blanket imprisoned my arms. I didn’t have the strength to free them, let alone grasp the pipe. There was nothing for it. I started shouting for help. I lay in bed close to an hour, taking a deep breath between each yelp as the mounting pain took more and more out of me. No one came. The nurses’ desk was too far away. I couldn’t shout loud enough. Even so the guy in the next room was telling me to shut up. Why didn’t he call someone for me? Why didn’t I ask him to? Frankly, after listening to him abuse his wife, I didn’t want to have anything to do with him.
Finally, an orderly from the floor below happened by. He released my hand, a gesture that I received with such relief that I never thought to ask his name. He left without a word, leaving me to wonder, “Who was that masked man?”
My wife and son visited me in the morning and asked why I looked so tired. When I told them, they passed the story on to the head nurse. Soon she and the director of planning appeared in my room, apologized profusely, and assured me that it would never happen again.
That night the same thing happened. This time it was my coccyx. It hurt. Nurses typically turned me every two hours during the night to prevent bedsores. These are to be avoided at all costs. Caused by lying in one position for too long a time, they are very slow healing and can even be fatal. Unfortunately, my coccyx started hurting before the two-hour period had passed.
I blew into the pipe. A nurse came in. He took the pipe away and asked what I needed. I told him I needed to be repositioned to take the pressure off my tailbone. He started to do it. Just then an alarm sounded. Someone on the ward had gone into cardiac arrest. The nurse ran to help. He never came back. The emergency must have driven me out of his mind. He certainly came close to driving me out of mine. I was still lying on my back in great discomfort and with no blowpipe anywhere near me. I spent another hour calling for help to no avail. The next morning the nurse wondered why I looked so tired.
The third night I suffered the same coccyx pain. I blew into my blowpipe. A night aide showed up, repositioned me and that was that. Problem solved. The solution turned out to be fleeting.
The fourth night the same pain. I was beginning to think it was nerve-damage related. I blew into the blowpipe. A night aide appeared. She took the blowpipe away.
“What do you want?” she said impatiently.
“Can you reposition me?” I asked. “It’s my coccyx again.”
“No!” she snapped. “You haven’t been lying on your back long enough.”
Without another word she turned away, switched off the blinking alarm light that my blowpipe puff had set in motion, and left the room. Of course, she left the blowpipe out of reach.
Spaulding instituted nightly rounds of each room as a result of my experience. A nurse would come to each room at the top of the hour and ask if the patient needed anything, unless the patient was asleep. That, of course, was a welcome change. But it didn’t come soon enough to prevent me from coming to grips with the harsh reality of how vulnerable I had become. I had been forced to behave like an infant. When I was in pain, all I could do was cry.
Indeed, it was at Spaulding that the emotional challenges I faced started to take their toll.
According to the records, MGH decided that I was depressed and put me on citalopram. I stayed on it in every hospital I went to. But as the days wore on I didn't feel depressed. I wasn't even sure how a depressed person ought to feel.
One of my MGH doctors told me months after I'd left the hospital that while I was there I was suffering from what he called situational depression. I took this to mean: “Sure you’re depressed. Someone in your condition has every right to be.” Sometimes depression is just depression.
There were times, however, when I exhibited more serious symptoms, symptoms pointing to something of a clinical nature. When visitors who came to see me for the first time were about to leave, I found myself tearing up. It came on me suddenly and without warning. I didn't try to hide it. I couldn't. After they'd gone, I tried to analyze why that was happening. It wasn't rocket science. My visitors could walk out of the hospital ward and return to their normal lives. All I could do was call for a nurse and ask her to hoist me back into bed. My visitors were all reminders of what I had lost. Their visits were occasions for my grieving, each one like a tiny little funeral.
Those were really tough times. I knew that I would start to cry when they got up to go. I also knew that I needed those visitors. They were my link with what I had lost and what I had to try to find again.
Despite my depression I fought against seeing a psychologist. There was one at Spaulding who seemed very nice, but I don't remember much about our conversations. She came to see me a few times. Then she went on vacation. By the time she returned, I was already at the VA.
There was also a social worker/psychologist of some sort. She was somehow connected with the church. She came to see me periodically to see if there was anything she could do for me. She was a nice woman in that practiced way of being nice. She gave me the feeling, perhaps unfairly, that she wasn’t there to make me feel better but to make herself feel better. Either way I wasn’t ready for her.
In order to fight the loss of appetite from Flagyl, I was given a drug called Dronabinol. It is made from that part of marijuana that is an appetite stimulant. One day she dropped in and asked me the usual question.
“Is there anything I can do for you?”
“Can you get me some weed?” I asked.
“I'm sorry,” she replied. “I don't understand.”
“Marijuana,” I said. “It helps make me want to eat.”
“I'm afraid not,” she replied nervously.
That was the end of her periodic visits.
Perhaps eager to feel some semblance of the life I had before the accident, I was planning to go through with a public lecture I had committed to give months earlier. I had been invited to address the MIT class of 1949 in connection with their 65th reunion. The class matriculation coincided with the 1949 visit of Winston Churchill to the Institute 65 years earlier. The visit put MIT into a quandary. Churchill had to be honored in some way. But the Institute, out of principle, never gives honorary degrees. The matter was resolved by making Churchill an honorary lecturer.
The convergence of Churchill’s visit and their matriculation led my host to ask if I could somehow include remarks about his historic visit. I wrote what I thought was a serviceable talk. Then the accident happened. Understandably, I had completely forgotten about the obligation until I got to Spaulding.
Spaulding had an IT (information technology) person on staff. This person was a great help to me. She was familiar with dictating software called Dragon Dictate and offered her services in getting me started. I ordered the software and had it installed on my laptop. Although I couldn’t use my fingers, my brain was clear and my vocal tract unaffected. I was able to put the software to use almost immediately, and I decided to give the address. I felt strongly about it, even though the decision made no sense at all. Just getting to the venue, a function room in a nearby hotel, would be a major effort. I would have to go in an ambulance. I would have to arrange for a wheelchair. Since my physical needs at that point were unpredictable, incontinence could easily plunge my audience and me into the depths of embarrassment. Why risk it? Why, indeed? And yet I was determined to go through with it.
The powers that be at Spaulding didn't try to dissuade me. They believed this kind of focus was good for a patient. If I had insisted, I'm sure they would have gone ahead with the necessary arrangements. After all they were my caregivers, not my keepers. In the end my family after conversations with several Spaulding nurses managed to get me to be reasonable. We compromised.
I wrote a new talk, one that addressed what had happened to me. At that point it was the only thing I could honestly talk about. A talk about Churchill from a speaker who was obviously in distress seemed absurd. Not only would there be an elephant in the room, I would be the elephant. Thanks to help from Nancy and my son, Benjamin (my daughter, Beth, hadn't arrived yet), I was convinced to go another route. A friend and former MIT Vice-President before she retired, Kathryn Wilmore, still had clout. She borrowed a high-end camera from MIT and my son videotaped the new talk in my hospital room. At the dinner Kathryn introduced the video.
I wasn't sure I had done the right thing. The image in the video was of someone who was propped up in a wheelchair, obviously immobilized. The talking head could only blurt out three words before he had to gulp enough air for the next three words. Kathryn told me that halfway through the video the spouse of one of the attendees cried out, “For God sakes, stop. I can't take this anymore.”
When I heard that, I felt terrible. I had inflicted myself upon them. Why would I do that? Perhaps, I told myself, I was angry and wanted to lash out at someone, anyone. Perhaps, I told myself, I was in denial about what had happened to me. It’s was business as usual. Something as pesky as a spinal cord injury wasn’t going to keep me from fulfilling an obligation. Perhaps, I told myself, I was looking for sympathy. Actually, none of these felt right.
At some level I must have been telling myself that things are not as bad as they look, that everything will turn out all right in the morning. In retrospect, that I did go through with it is as good an indication as any that I needed psychiatric help. It wasn’t as if it was the first time. When my first marriage went south, I was distraught. I found a good shrink. Back then, I knew I was in trouble. At the end of my therapy, my shrink told me that when I first came to him, he thought I was on the verge of a nervous breakdown. That experience gave me some perspective on how to deal with what was happening to me now. I had learned to look at myself from the outside. Although it didn't make me feel better, at least I knew what I was feeling and to a great extent why. That was a plus.
It was also a minus. After my accident I was angry. I knew I was angry. Of course, I knew why. But that in itself didn't make the anger go away. Nor did it stop me from taking it out on others. God help me, I took it out on Nancy.
Some years ago, my wife Nancy’s oldest sister developed a brain tumor. She became seriously demented. When Nancy and I went to North Carolina to help with the crisis, we found a family swirling with anxiety around a hub of serenity. Nancy’s sister was calm, tranquil, and pleased beyond belief to be doing the simplest things like eating pancakes drowning in syrup. She was like the eye of a hurricane. My injury created something far more disturbing for my family, a hurricane without an eye.
On the morning of my accident, Nancy told me that as she stood in the middle of our street watching me speed away she thought, “I’ll never be hugged again.” But in that ambulance, whatever my thoughts were, they were not about Nancy. I suppose that is understandable. Even so she was in no less a state of crisis than I. In one way at least, her situation was direr than mine.
I was on the verge of being helped by an incredible array of caregivers, from superb surgeons, to supportive specialists, to top-notch nurses to devoted therapists, all of whom were focused on saving my life. Nancy, on the other hand, was on the verge of being helped by no one. And yet from an emotional point of view her need was certainly as great as mine. A significant number of the partners of traumatic injury sufferers end up being hospitalized themselves.
For over a month she had no one by her side to help her through the grueling days of my operations, my recoveries, my relapses, and, most of all, my not being there. She dealt with her crisis by keeping copious notes on what was happening to me. The detail was as fine as a court stenographer’s. But that, of course, was a Band-Aid over her turmoil. And they don’t make Band-Aids big enough. During the first month of my confinement Nancy lost 20 pounds. Her clavicles began to rise up out of her shoulders like newborn islands. By the time I left MGH, she was gaunt.
It all came to a head after I had been at Spaulding for two weeks. I was just beginning to get over my C. diff infection. My daughter Beth lives in Montana. She stopped off to see me for a week on her way to visit her brother Ben in London. It was a Friday evening. Beth and Nancy were in the room with me. I was feeling incredibly weak from the strain C. diff had put on my body. At one point during what was a one-way conversation, with me barely able to add anything, I managed to put two words together. Beth remembers me saying, “As long as I can go into a room, close the door, and think, I don’t care what happens to my body.”
The most damaging things are said in anger. I’m sure that remark came from the pit of my anger. I should never have said it. Nancy took it to mean exactly what it said—that any kind of relationship between the two of us was over. It threw her into a panic. That night over dinner with Beth, Nancy broke down and began sobbing. Later at our house in Cambridge, where Beth was staying, the crying continued. Nancy had suddenly envisioned the rest of her life chained to someone who required every kind of fundamental care—bladder, bowel, dressing, undressing—and who disappeared behind a closed door once the care was administered. She saw herself suddenly transformed from a life partner to a lifer.
“If that’s the kind of life he sees for us,” she said between sobs, “then our relationship is over.”
The next morning Nancy left a note for Beth apologizing for her breakdown. But it was, of course, too late to avoid a crisis. Beth told me that when she witnessed Nancy’s “meltdown,” she began to suffer much the same thing.
Her crisis came in the form of an anxiety attack. Nancy had decided to stay away from me for the weekend to think things through. Beth came to the hospital. She said that at some point during the visit she found herself unable to breathe. She sought help in the form of a social worker. After an hour Beth was calm enough to go for a walk and try to process what had happened.
My thoughtless remark had been the catalyst for all this turmoil. In my defense I had been through six weeks of the special hell that those who have undergone major operations inevitably endure. It was no surprise that I wanted to stick my head in the sand and make the world go away. But that is beside the point. The fact is that Nancy, Beth, and I were all harnessed to a troika of misery. Unlike Nancy’s sister, who was the eye of a hurricane, the three of us were the hurricane.
All three relationships—the one between my daughter and my wife, my daughter and me, and my wife and me—were in crisis. I didn’t know what to do. In any case, I was still too weak to think clearly. Nancy made the next move.
She came to see me on the Monday after her meltdown.
“We have to talk,” she said.
I could tell this was serious. She was looking right at me. She wasn’t sitting down.
“Okay,” I said.
“This is one of those conversations that can’t wait, Jay. I’m sorry but we just have to.”
Now I knew it was serious. She called me Jay. Not sweetheart or babe.
“This isn’t what I signed up for.”
I was terrified.
“I don’t understand,” I said.
“The last time I was here, you said that you didn’t care what happened to you as long as you could go into your study and work. I’m not willing to watch you disappear behind a closed door every day. That’s not what we had before your accident, and I don’t want that now. I’m willing to work out a new life for us. I’m willing to give it 110 percent but as a wife, not as a nurse.”
When Nancy and I first started dating close to 25 years ago, I had been separated from my first wife for over three years. I was in the middle of divorce proceedings. Even so, I could not stop talking about my failed marriage. It was as if I had become addicted to it.
One evening over the telephone she asked impatiently, interrupting one of my typical laments, “How long are you going to wallow in remorse?”
That was all I needed to hear. Like the Japanese after WWII, I turned on a dime. I never wallowed in self-pity over my broken marriage again. Why did I do that? I think the answer is simple. I didn’t want to lose Nancy. Now that prospect loomed again a quarter of a century later. It was another no-brainer.
“You’re right,” I said. “No more wallowing in remorse.”
I knew that Nancy would get the reference. I also knew that talk was cheap. I’d have to do more than that.
“To prove it,” I went on, “I’ll make you a promise. I’ll walk again.”
It wasn’t a completely desperate promise. A few days earlier Ron Hirschberg, my rehab physician and new friend from MGH, had visited me in Spaulding. When I first met him at MGH, I asked him what my prospects were. He hemmed and hawed. The more he did, the more I pressed. Finally, he said, “It’s doubtful that you will walk again. I’m sorry.”
Now, at Spaulding, he wanted to know how I was doing. I said that whatever haul I was on, it was going to be a long one.
“Do you mind if I do a little examination?” he asked.
He reached under the covers and put his hands on my legs just above the knees.
“Can you squeeze those muscles?”
I tightened my quadriceps. I could actually feel myself doing it.
“Do you know what that means?” he said, his face brightening. “It means that someday you’ll be able to stand.”
“Will I be able to walk?”
“After what I just felt, I wouldn’t rule it out,” he said.
Now in this fateful conversation with Nancy, I determined that I would do everything I possibly could to make walking a reality. I knew that each step of the way (pun unintended) would be proof to Nancy that I really did mean it when I said, “I’ll make you a promise. I’ll walk again.”
Walking was really a metaphor. It meant much more than just being able to go from my bed to the breakfast table on my own. It meant that I could take care of myself and that meant that Nancy could take care of herself and that meant that we could take care of one another. Walking was a code word for independence. That’s what it meant for me after that fateful conversation with Nancy.
Nancy agreed to take me at my word. But it must have seemed like wishful thinking to her. I still couldn’t move my arms out from beneath the bedcovers.
I had been at Spaulding for a month, Christina and Nicole, two of my therapists at MGH, came to visit me. We had become very good friends, and when I said goodbye to them, I told them that I would come back to see them when this was all over. They beat me to it. It was like old home week. I was delighted to see them.
While I was at MGH, I mentioned to Christina, that a wedding anniversary was coming up for Nancy and me. On her own she bought an anniversary card. But how could I sign it? She had thought of that. She fitted out a gadget that she could attach a pen to. By holding the device in my teeth, I was able to sign the card. I was surprised that my handwriting (mouthwriting?) was recognizable. Nicole had taken down several of my ramblings in one of my drug stupors, thinking rightly enough that I would be interested once I came out of it. She knew that I wanted to write a book.
After they left, it occurred to me that no one at Spaulding would visit me at my next stop. The reason was the distance between the therapist and the patient. Ditto with the medical staff. Part of the culture of the place seemed to require that a certain distance be maintained.
This was ironic. The architects had gone to great lengths to reduce the distance between the inside of Spaulding and the outside. But nothing had been done about the distance between the staff and the patient. This aloofness was probably intentional. Caregivers from doctors to nurses to therapists worry about getting too close to a patient. They think it might cloud their objectivity and therefore their effectiveness. They draw the line and are careful not to step over it. I experienced both kinds of care. Frankly, I prefer the caregivers who don't draw lines. They get the most out of me because I want to get the most out of them.
Occupied as they were during the last two or three weeks of my stay at Spaulding with securing a place for me to go when Medicare funds ran out, they relegated rehabilitation to the back burner. Once it became apparent that I had somewhere to go, the level of care at Spaulding plummeted like the stock market on Black Monday. No more balancing acts on the mat. No more electrical stimulation of my immobile arms on high-tech bicycles. No more teetering on tilt tables. Substitute therapists would come into my room and ask me what I felt like doing instead of telling me what I needed to be doing. I didn’t admire this in them. They should have been working up to the very last minute making me as whole as they possibly could. It shouldn’t have mattered that I had become a lame-duck patient.
When I left Spaulding for good, no one came to the ambulance dock to say goodbye. In fact, I interpreted the ambient noise of the building as the hospital breathing a sigh of relief.