On July 7, 2014, my 79th birthday, I left Spaulding Rehab in late morning and arrived midday at the VA hospital in West Roxbury. Since I exhaled vulnerability the way others exhaled air, every transfer I made was fraught with anxiety. This was my third time in an ambulance. Like the ball in a roulette wheel I knew where I had been, but I had no idea where I was going.
Ever since the accident, my life had been in someone else’s hands. It had to be. I couldn't move my own. I had little hope this was going to change anytime soon. Each transfer had taken me from a familiar environment to a strange one via a magical moving box into which I had been strapped, like a magician’s assistant. I would hear an engine start up. The box would sway, the motion punctuated by bits of conversation that made no sense, electronic gurgles disconnected from their sources. And then, à la Monty Python, “Now for something completely different.”
I needn’t have worried about this trip. Although I didn’t realize it, I was exiting the US healthcare system and entering a system untrammeled by insurance companies. There was no such thing as a “length of stay” problem. From now on my care would be determined, not by the constraints of an insurance policy, but by the ethos of medicine, the Hippocratic oath. The only question my caregivers ever asked themselves was whether I had yet reached my full potential and if not, what they could do to get me there.
It was the best thing that could have happened to me. Indeed, it was the best thing that could have happened to anyone in my condition. I no longer worried about how I was going to pay for care. Instead I worried about how I was going to please my caregivers by becoming what they thought was possible for me. Money was simply not in the picture. As long as I improved, they went on helping. When I reached the point where they felt there was nothing more they could do for me, we said goodbye.
Except that we never really said goodbye. Once you are in the VA healthcare system, you are in it for life. Even when I left the hospital as an inpatient, they made sure that I never ran out of the meds, few in number though they are. They subsidized caregivers who come to my apartment regularly to help with chores still beyond me. They provide me with bed and bathroom supplies as they are needed. They provide maintenance for my wheelchair. They see me once a year for a full-scale medical checkup, to say nothing of the major equipment they provided me with, a wheelchair, an overhead hoist, a hospital bed and walkers.
When I first entered the ward as an inpatient over 2 ½ years ago, I noticed something “in the air.” It was intangible, but very real. I mentioned this to one of my nurses. She understood immediately.
“Once you come into the VA, you are part of our family,” she said. “We never say goodbye.”
If the first responders and the neurosurgeons and nurses at the Massachusetts General Hospital saved my life, then the doctors, nurses and the therapists at the VA hospital returned me to a life worth living.
The next four months turned out to be the best birthday present I ever received. The party began inauspiciously when I was wheeled into the SCI ward, ward A2, room 225. There were four beds. I was the only occupant. I was deposited into bed D. It was just to the right as you rolled into the room. I remained the only occupant for four days.
Those early days were spent in getting used to the hospital routine, to tests and to beginning physical therapy. That started immediately. I luxuriated in my splendid isolation. It was as if I had lucked into my own private room. I should have known better. One morning at 1 AM the lights in the room suddenly came on full blast. A battery of voices was shouting “What’s your name?” A 93-year-old veteran had been admitted because he had dehydrated himself to the point of utter confusion. He was unable to reply. The nurses and doctors in the room were obviously concerned. They worked hard over the newcomer.
It took four days to bring him back. By then he was fully conscious and able to answer questions sensibly so long as they were yelled at him. He was hard of hearing. The problem seemed to be that he had forgotten to drink. Apparently no one had reminded him. He was sent back to his permanent residence, a nursing home, as hydrated as a freshly used sponge. The staff was elated.
Something was always happening to wake me up. Every two hours a nurse would roll me from one side of the bed to the other, keeping me in this new position by stuffing a pillow under my back. This was done to prevent bedsores—a horrible consequence of not being able to move normally while asleep. Too much pressure in one place over too long a time creates necrotic tissue that can eat its way down to the bone. Christopher Reeve died from the consequences of a bedsore.
Many of my friends were curious about the kinds of roommates I would have in a hospital devoted solely to veterans. I think they expected it to be populated by IUD victims from Iraq or Afghanistan. They anticipated long political fights about what the wars were really about. That never happened. Everyone—nurses, patients, doctors, therapists—conscientiously avoided the usual taboo topics, religion and politics. In any case, the average age of the population in the ward, at least during my stay there, was somewhere around 70. My fellow patients’ war was most likely like mine, Vietnam, although many of them were like me, admitted because of a non-service related accident like a car crash or falling off a porch or diving into a pond and hitting your head on a hidden rock, all of which happened.
After the dehydrated 93-year-old left, a stream of veterans in various stages of disability joined me in my no-longer-private room. Not all of them were communicative. A sliding curtain that was always closed separated me from my next roommate. He was in the adjacent bed, bed C. I never actually saw him or spoke to him. But I heard him while he was asleep. He sounded like a rhinoceros I once heard in Kenya calling for company. His snoring was punctuated by unearthly gasps that I thought were his last but never were. I envied the hard-of-hearing 93-year-old. The snorer was gone in a week. When he left, I had no idea who he was or what he looked like. Maybe I shouldn’t count him as a roommate, or the next one either.
He was also anonymous—well, almost. He was in the bed directly opposite, bed A. He, too, remained behind curtains except for one day. I know about this day only because Nancy told me weeks after he had gone. My guess is that what Nancy told me was the reason he remained behind curtains. She had come into the room to visit with me. My anonymous roommate lay on his bed, his curtains half open, his legs spread wide with an erection. When he saw Nancy, he spread his legs wider.
I asked one of the nurses how frequently that kind of thing happened.
“Not often,” she said. “Every now and then.”
“When it happens, what do you do?” I asked.
“You say something like ‘I see you need a few minutes to yourself. I’ll be right back.’
Then you just walk away,” she explained.
I was surprised it was not more frequent. Dr. Hirschberg at MGH told me that the two most common questions young SCI patients ask their doctors are, in this order: Will I walk again? Will I have sex again?
That didn't surprise me either. Sex was on my mind when we arrived at MGH that first afternoon. Nancy said that just before I disappeared into an examining room, I said, “Thank God my climax last night was as good as it was. It will probably be my last.”
Pete was my next roommate. He was around 70 years old. The accident that brought him to the VA involved a service-related explosion that broke his back and left him paralyzed. It happened over half a century ago. But after six months in the hospital, he was able to walk with a cane. He did so for the next 40 years, but the lopsided gait he was forced to adopt eventually brought about recurrences of his paralysis. For the last 13 years his ability to walk had come and gone. As a result, he had to have several operations on his spine. They left his head immobile. In a conversation he would turn his wheelchair straight at you as if he were aiming a cannon. His bald, bullet-shaped head enhanced the impression.
When I met Pete, he was in for one of his periodic bouts with being unable to walk. Pete had had a rich life after the Navy. He worked on the Apollo guidance system at Draper Lab and knew Doc Draper, its legendary head.
Draper, known as the father of inertial navigation, was as unconventional as he was creative. Pete told me a story that was a perfect illustration. The Draper Lab, closely affiliated with MIT, has a multistory garage attached to it with a spiraling exit ramp. At the bottom is one of those automatic arms that go up and down to let authorized vehicles pass in and out. When Pete started working at Draper, he was told that if he ever heard a car racing down the ramp, be sure to get out of the way. Sure enough, one day that happened. Pete watched as Doc Draper sped down the ramp. At ground level his MG made straight for the automatic arm. Within 10 feet it slowly started to raise up. Draper didn't slow down. Just at the point when it looked as if the arm was going to smack into the windshield, the car slipped harmlessly under and disappeared around the corner.
The next day Pete ran into Draper in the corridor. He mentioned he had witnessed the close shave.
“Not at all,” said Draper. “Some time back I calculated the vertical speed of the arm against the horizontal acceleration of my car. If I travel at exactly 44 mph, I'll miss the arm by one half-inch.”
Pete had led an active and interesting life. He even worked on the software that I am using as I dictate this book. He continued to do so after he retired. He loved to cook and baking bread was a specialty. But every now and then his legs would fail him and he would be back in the hospital.
He was obviously one of those SCI patients who, rather than allow himself to be beaten down by his disability, was driven by the adage “When the going gets tough, the tough get going.”
“You just can’t give up,” he once advised me. “You have to give rehab 100 percent 100 percent of the time.”
Pete was a practical, no-nonsense, straight arrow kind of guy. This became clear when a third roommate joined us. I am not going to use his real name. He was in bed A next to Pete’s (bed B). It was the one that held the anonymous exhibitionist, the one directly across from mine. The newcomer was one of those who had given up. Like so many of those confined to wheelchairs, he was very overweight. His body looked like a thick candle that had melted down into the seat. He was a soft-spoken man, but every so often he would explode, spewing profanities at his caregivers like venom from a spitting cobra.
One night he exploded at the nurse’s assistant who was helping him into bed.
“You dumb fucking bitch,” he yelled. “You don’t know what the fuck you’re doing. Get the hell away from me. Won’t somebody in this goddamn place help me? You are all so fucking stupid.”
My heart sank. The woman was black and I waited for the racial epithet that, thankfully, never came. I spoke to her about it the next day. She surprised me. It hadn't bothered her at all.
"It happens to all of us," she told me with a shrug. "You learn to pay it no never-mind."
I concluded that this was his way of giving up. By lashing out at those who were trying to help him, he was trying to make his problem their problem. The strategy was hopeless. After all, they could all go home at the end of the day.
It was quite frightening sometimes to wake up in the middle of the night to one of his tirades. They weren’t always directed at the nursing staff. Sometimes during the early evening, he would call a woman who may have been his wife or his girlfriend and yell at her. He religiously phoned his mother every night. These calls generally consisted of his telling his mother what he was having for dinner. They never involved a tirade.
“It’s Yankee pot roast, Mom, with mashed potatoes and peas.” And then he would end with “Love you, Mom. I’ll call you tomorrow,” as if a scatological comment had never blown passed his lips.
The abuse, when he offered it, was never more than verbal since he couldn’t move his legs and had limited use of his hands. He had been in a car accident.
I toggled between disliking him and feeling very sorry for him. He obviously lacked the resources to deal with what was, after all, a situation that demanded every ounce of his resources. Pete understood that.
One night after one of his outbursts, Pete decided to give him some advice.
“You shouldn’t curse the nurses,” he began. “It doesn’t make sense to curse the people who are helping you. Remember that you were a Marine and therefore a gentleman. Your conduct is unbecoming a gentleman. Instead of cursing them, try thanking them.”
The advice stuck for a while. Shortly after it was given, our roommate had a bowel movement. These normally occurred in bed and were attended to by the caregivers. You always knew when it happened because of the odor that filled the room. The nurses would often come through with an air freshener squirting in all directions to combat the smell. After this particular bowel movement, our roommate decided to follow Pete’s advice. When the nurse finished cleaning him up, he said, “Thank you for the bowel movement.”
One morning our roommate’s outburst was especially virulent. The next day he was gone. As I rode my wheelchair down the corridor, I noticed that he had been placed in a room without other occupants. A sign on the door said that those who enter should show caution because the patient had a contagious infection. The sign stayed up only one day. Then it was gone, but my roommate remained in isolation, until the inevitable next outburst. When it came, I happened to be nearby. I heard yelling and then a ruckus and then four or five caregivers rushing to deal with the situation. Shortly after that, our erstwhile roommate was sent back to the old soldiers’ home he had come from. When we said goodbye, he told me he would never walk again. It was easy to believe.
My most remarkable roommate was my last. In an odd way his coming was an omen. It foretold that maybe my days as a trombone player were not over. The evening of the day of my accident I was in an intensive care unit at MGH. I should have been sitting in the second chair of the Aardvark Jazz Orchestra playing a concert at MIT. I so looked forward to those concerts. The players were unlike those of any big band I'd ever played in. We treated one another like members of a large family. I knew that my not being there would create a disturbance in the Force. What a terrible night to be in an intensive care unit. If this had to happen, why couldn't it have waited a day? Dumb question.
It took me 2½ months to get from the ICU to the VA hospital gymnasium. The first day with my physical therapists I asked if I could incorporate trombone playing into my therapy. My accident had reduced my lung capacity by 25%. Maybe I could get some of that back. The trombone, I argued, required me to breathe from my diaphragm, to move my right arm as I pushed the slide of the horn in and out. There was no need for special pleading. My therapists thought it was a no-brainer.
A friend loaned me his pBone, a plastic trombone. They sell for $149 and have a surprisingly good sound. His was green. They also come in red, purple, blue and yellow. For me the biggest advantage was its heft. It weighed less than 2 pounds. Even so it was too heavy. My therapists had to hold the horn on my shoulder while I brought my lips up to the mouthpiece. Those first notes sounded like a Paris taxi rounding the Arc de Triomphe. It was as if I had never played before.
I practiced several times a week. My room was out of the question. In a ward with people some of whom were sick as well as mobility-challenged—that is, they couldn’t get away from me—the last thing in the world you want to hear is the blat of a plastic trombone. As a kind of reward after I had gone through a regular session, my therapists would let me practice in the hospital gym. As with everything else, each week I got a little stronger. After a while I was able to hold the horn, even if I could not move the slide. I played it like a bugle. One of my first tunes was Taps. I could do the whole thing in first position. It was too mournful for the gym. I switched to fanfares.
If you're going to play a brass instrument, you have to be able to pump air. In the beginning it was hard for me to speak four words, let alone produce a four bar musical phrase from 9 feet of tubing. But the mere effort to eke out a note each time I visited the gymnasium paid off, just like everything else. It took patience, perseverance and persistence. And also, as is always the case, a little luck.
In my case the luck came in the form of Joe, my last roommate. Joe was wheeled into the room one afternoon fresh from an operation to remove a tumor that had been growing on his lower spine. His wasn't strictly speaking a spinal cord injury. But the symptoms were close enough for jazz.
Unlike most of my roommates, Joe was voluble from the get-go. I learned almost immediately that he played piano. He had a band and played in an Irish pub in southern New Hampshire. It was the kind of place where on St. Patrick’s Day the customers vied to see who could sing Danny Boy the best. The winner got a free trip to the bar.
When we discovered that we were both musicians—about 10 minutes after he was first wheeled into the room—we did what most musicians do. We played “Who do you know?” him
Joe mentioned a player. Not only did I know him, I said, but we had been on a couple of gigs together. He was a friend of Joe's from way back. Joe phoned him on the spot. The three of us talked for a half-hour, starting off with this astonishing coincidence. What, after all, are the odds that two musicians would be assigned to the same room of the West Roxbury SCI ward and that we would have a mutual friend?
Joe was in his mid-60s. His operation was a success, but it compromised the nerve feed to his legs. Like me Joe was here to learn to walk again, although in his case it was pretty clear he would manage it sooner than the rest of us. He could put himself in bed. He could get up and with the aid of a walker struggle across the room to the bathroom where, because of the nature of his operation, he spent a lot of time.
Once when Nancy was showing some visitors my room, she opened the bathroom door to let them see what the shower looked like. Joe was sitting on the toilet. After that, Nancy put up a sign on the bathroom door that read “Joe’s place. Knock before entering.”
One day Bruce, the recreation therapist, put two and two together. He knew I played trombone. He could hardly miss it and he heard Joe was a pianist. He moved the electric keyboard gathering dust in the day room into our room so that Joe and I could play together, tunes like St. James Infirmary, When the Saints Go Marching in, and Route 66. Physically, Joe was in much better shape than I was. He could play and sing for hours. I could play maybe 5 or 10 minutes before my lungs gave out and I had to shout “Take it away, Joe.”
Sometimes, a small crowd would gather at the door to listen. I always respond to an audience. I play better. I play longer, though that is not always a good thing. At the end of the session I was exhausted. Joe made plans for us to give a concert up in New Hampshire once I was ready. I went along with it; though in my heart of hearts I doubted I would ever play in public again accept, perhaps, in a hospital, where the standards aren’t so high.
One evening three of my therapist friends from MGH, Christina, Nicole and Lara, paid me a visit. I knew they were coming a week before. So I asked Joe if we could put on a little concert for them. He was all for it. But over the course of the week he developed tooth trouble. He had to have two teeth pulled the morning of the scheduled visit. Joe struggled through the day on Percocet. By early evening he told me he wasn't up for the concert, but when he saw the three women come into the ward—they are as beautiful as they are skilled—Joe told me the Percocet was working better than he thought. Lara was a jazz singer. She joined in. Pretty soon heads began to appear at the door. Staff gathered in the hallway. Like Mickey Rooney and Judy Garland we were putting on a show. That's when I thought maybe I had a crack at getting back in the game after all.
A camaraderie was at work at the VA that I never saw at Spaulding. Patients with complete spinal cord injuries who would never walk again often cheered on patients with incomplete injuries who were struggling to regain some semblance of ambulation as they inched their way along a set of parallel bars. A conversation with a stranger in a wheelchair in the gymnasium often began spontaneously with the question “What happened to you?” Then circumstances and names were exchanged and the next time you ran into that person you greeted each other by name.
This friendliness extended throughout the hospital. Staff I didn’t know would nod and smile at me as if they had been assigned to my ward. Workmen would thank me for my service. Most of all I noticed in the elevators that, whether entering or exiting, people would stop and hold the door for me
The inpatients at the VA came in strange sizes and shapes. But the great thing was that while everyone was aware of it, no one seemed to notice. Perhaps it is because being incapacitated in one way or another was the new normal. During my first weeks at the VA, I saw veterans without feet, some without legs—sometimes one leg, sometimes both. I saw one patient whose right leg had been amputated at the knee. He was wearing a prosthetic device, a thin, highly machined metal bar that ended surreally in a laced-up tennis shoe. The upper end of the bar was attached to his knee by means of a well-engineered ball joint. By rotating his thigh, he could spin the device in a 360° circle like a burlesque queen spinning her tassels. I saw another veteran with a similar prosthetic. He could rotate the leg in a 180° arc so that the bottom shoe faced the ceiling and the toe pointed toward his face.
“It makes a great book stand,” he said one day, demonstrating for me.
I saw one man whose leg had been amputated just below the knee. The surgeon had folded the skin over the stump so that his ample thigh resembled a baby in diapers.
The patient who dove into a pond and came up paralyzed after hitting a submerged rock—it was at his brother’s wedding—scared the hell out of me by tilting his wheelchair backwards and balancing on two wheels like a daredevil driver. How did he learn to do it? Surely not before his accident. He must have had to practice. But what if he fell? Such a fall would have been a disaster for me given my “crappy” spine. I marveled at the way his spirit survived his injury. But then there were a lot of patients who fit that description.
I saw these mostly in the swimming pool. Swimmers with no use of their legs but with powerful arms churning the length of the pool to prepare themselves for upcoming contests like the wheelchair Olympics. The stronger among them could do as many as 80 laps. These athletes were remarkable. They trained relentlessly. They flew to game sites all over the country. They won medals. It was a pleasure watching them swim to the edge of the pool, put their hands on top of the ledge and raise their bodies up out of the water in one smooth, continuous, twisting motion ending up sitting on the pool deck with legs limp as streamers dangling in the water.
One swimmer, an outpatient, had no use of his legs and what seemed to me like spastic use of his arms. His voice had been affected by his injury, and he could speak only in halting, high-pitched squeaks that bounced off the walls of the pool like ping-pong balls. Everyone except me understood what he was saying, mostly jokes. Apparently, he had been at it for a very long time. He wore swimming goggles and lapped the pool in an erratic, zigzag way. When he bumped into other swimmers, as he often did, they would rag him. He responded in kind. Sometimes his head would disappear beneath the surface, and I would worry that he would never right himself. No one else did.
Then there were those who, unable to walk on land, could walk between parallel bars that were submerged in the pool, where buoyancy gave them a 60 percent head start on their body weight. Typically, these swimmers lifted their bodies out of the water up to their chests as they used the bars and their arms to propel themselves forward. Waiting for my turn in the water, I watched them from poolside. Many had large torsos and little hair. They looked like hard-boiled eggs bobbing up-and-down in the water.
When it was my turn, Eileen or Jim, my pool therapists, would wrap a sling underneath me, attach its four straps to an overhead trapeze, and lift me up and out of my wheelchair, over the lip of the pool and into the 88°, solar-panel-heated water. I felt like a teabag being steeped in a giant teacup.
My pool therapist always attached flotation gear to my arms and neck, mainly because I was so apprehensive. She would then stand with her hands holding me from behind and guide me back and forth across the width of the pool while I kicked my legs or pulled my knees up to my chest or tried to move my arms in a snow angel maneuver without breaking the surface of the water. I felt like a poor relation of the other swimmers, even though many of them were in worse shape than me. They would never walk again. I, at least, had a chance at it. But they were so at home in the water. They didn’t need a hands-on guardian. They were comfortable in their wounded skins. They were my new normals.
As much as the hospital was twisting my perspective, it was also a place where I was surrounded by care 24 hours a day. I knew the day was coming when I would be discharged. I both longed for it and dreaded it. In the hospital when I contracted a urinary tract infection, the doctor making morning rounds prescribed the appropriate antibiotic, and I was well on the way to recovery in less than a day. In the privacy of my own apartment, how could Nancy or I emulate that kind of care? Life had become a constant battle. My enemies were my wounded body and my anxiety-ridden mind.
It was a very surreal experience. Sometimes I would look at the wounded around me and think of them as “them.” They are the ones who will be mired in a hospital or some assisted living facility, where they will always belong to the them’s. Surely, I am not one of them. I’ll be walking soon. I’ll belong with the normal people who take care of me, with the visitors who come to see their loved ones in the hospital and leave on their own two feet, with the people that I glimpse through the window of my room as they jog along Spring Street.
Other times I identified with the wounded. It was a kind of identity crisis that I would never have envisioned in a thousand years, toggling back and forth as I did between “them” and “us.”
The extent to which a spinal cord injury infantilizes the patient is astounding. For me, the lack of privacy around bowel movements filled me with embarrassment and depression. In the beginning my bowel movements took place in bed. My nurses rolled me over, stuffed wads of absorbent paper mats under me and told me to go whenever I was ready. I was someone who had always kept the bathroom door shut.
“These things happen,” my nurse of the moment would say. “It’s perfectly natural. Stop worrying about it.”
It didn’t help. My depression hung around like a drunk outside a bar.
In February 2014 in the New York Review of Books, the late Dr. Arnold Relman, former editor-in-chief of the New England Journal of Medicine, wrote gloomily of his stay in a Spaulding chronic illness facility in Cambridge, Massachusetts.
My experience at Spaulding was much different from that at MGH, and the lack of integration of its facilities to deal with particular cases was more typical of the US health system. Spaulding illustrated how patients, even when they are physicians, can feel adrift and confused when their care lacks firm, identifiable coordination by a physician in charge, to whom the patient can look for guidance and information. That function is best performed by the patient’s own primary care physician, but sometimes a hospital specialist can play that part just as well…
What is important is that someone who knows the patient oversees their care, ensures that the many specialized services work together in the patient’s interest, and that the patient is kept fully involved and informed. At Spaulding, that was not the case, and the US healthcare system suffers from the same deficiency. The growing national shortage of primary care physicians allows for fragmentation, duplication, and lack of coordination of medical services.
Based on Dr. Relman’s account, I certainly dodged a bullet when I went to the VA.
When I left MGH, had it not been for Ron Hirschberg’s intervention my next stop would in all likelihood have been that Spaulding Cambridge facility. Medicaid and Medicare would have given me six weeks there, maybe a bit more. But then, whether or not I would need an overhead hoist to get in and out of bed, whether my bowels or bladder worked or not, whether I could feed myself or not, no matter how helpless my tetraplegia would have rendered me, the US healthcare system could offer me little more. I would have been entitled to three weeks at an assisted living facility with limited rehabilitation capability. And then I would have been cut loose. I would have been on my own even though, as it turned out, my body was capable of responding to 15 additional months of rehab care.
Once again by pointing the way to the VA West Roxbury, I had Spaulding to thank for bypassing Spaulding. When I got there, I was immediately immersed in a practice that was precisely what Dr. Relman had found missing at Spaulding Cambridge, someone who declared ownership of the rehabilitation process and who insured that “the many specialized services work together in the patient’s interest.” Dr. Relman declared “That function is best performed by the patient’s own primary care physician…” He was right, of course. That was precisely the person in charge of my care at the VA.
Every Wednesday afternoon I participated in a CARF meeting. I think the initials stand for Commission on Accreditation of Rehabilitation Facilities. I have no idea why the name, but the idea is great. All those involved in taking care of me, everyone from my doctors and nurses to my therapists, sat at tables arranged in a horseshoe fashion in an otherwise bare conference room on the same floor as the spinal cord injury ward. My primary care physician, Dr. Vidya Jayawardena, ran the meeting while I sat in my wheelchair at the open end of the horseshoe. She would begin with a report on my physical progress. Then she would go around the horseshoe. A representative from each specialty—an occupational, physical, pool and recreational therapist, a nurse, a social worker, a case manager and a psychologist—would describe how well I was doing and what I needed to work on. This was coordination to a fare-thee-well.
The meetings were completely open, my wife Nancy often in attendance. Once when her sister Alicia and brother-in-law Ron were at the hospital visiting me from North Carolina, Dr. Jayawardena invited them to sit in.
As it happened, at that meeting I was asked to describe how my condom catheter was applied. The reason why was that my bladder was still unable to contract properly. Since E. coli had colonized it, the un-expelled urine was a perfect breeding ground for the bacteria. So I lived with the constant threat of a UTI, a urinary tract infection.
This was a continuing cause for concern. How many times should I be catheterized during the day: once, twice, four times? The idea was the emptier the bladder, the less chance for a UTI. However, that had to be balanced against the risk of catheterization actually causing a UTI. The protocol was constantly changing. The condom catheter was an important part of my daily routine. I think the doctor who asked me to go through the procedure wanted to make sure that it was being done right.
So for the benefit of everyone present, including Nancy’s relatives, I described the technique. When I got to the part about making sure it stayed in place, I said, “After it has been rolled on, most people hold the sheathed penis in their hand for 10 seconds. The warmth helps the condom stick to the skin,” I explained and then after a pause, “But Nancy and I prefer a blow torch.”
At one of the CARF meetings Dr. Jayawardena declared in her typically low keyed manner that it was time for me to start using an honest-to-god commode instead of my bed. From then on two nurses appeared beside my bed at 5 AM. They awakened me and my other roommates by turning on the lights and chattering. The chatter was always good-natured. One nurse was especially fond of quoting the King James Version of the Bible, “A merry heart does good like medicine. But a broken spirit dries the bones.” (Proverbs 17:22)
This struck her, I suppose, as good advice for a successful bowel movement. She would offer it often as she and her companion wrapped a sling around me, attached it to an overhead lift called a Hoyer, and transferred me to a chair with a large hole in the middle. Then they would wheel me into the nearby bathroom and center the chair over the commode. They would administer a mini-enema. Then they would delicately leave me to my own devices, closing the door behind them, but not before putting a call bell into my hand. I was to sit there until I was ready and then pull the cord.
Despite the indignity of it all, there was a silver lining. The semblance of normal bathroom behavior was intended to lift my spirits as well as prepare me for home. Being left completely alone was an unexpected benefit. The only demands made on me were the ones I made. For a short time in the early morning I was as far away from the sights, the sounds and the smells of the ward as I would get.
It was usually close to 6 AM when I called the nurses back. When they opened the door, I could see past them through the windows on the other side of the room. Outside the traffic was thickening. I thought of the drivers passing by the hospital and not having the slightest idea of what was happening a few hundred feet away. These thoughts were undoubtedly part of my struggle to decide which side of the line I was on—them or us.
When I pulled the cord, the nurses responded almost immediately. They would wheel me off the commode, clean me, and attach me to the Hoyer lift. Then they would maneuver me over my bed, where for a few brief moments I would dangle like a piece of low-hanging fruit. Then they lowered me.
By now it would be 6:30 AM. I would doze until breakfast. It was prepared at a kitchen several miles away. Scheduled for 8 AM, it was almost always a few minutes late. An orderly pushing a wagon that accommodated 24 trays would stop outside the room and bring our breakfasts in one by one. The orderlies ranged from big, burly, neckless men to wizened old ones interchangeable with some of the men they were serving. They were always cheery. “Good morning. Captain.” Or “Room service.”
After the trays were distributed, one of my roommates would call out, “Eggs Florentine. They got my order right today.”
Another would answer, “Me, too. Eggs Benedict and they remembered the flower vase.”
Of course, it was always scrambled eggs made from powder. Or French toast that tasted like cardboard. In fact, the toast did as well. There was also dry cereal and hot cereal, either Cream of Wheat or oatmeal. The drinks were coffee, tea, juice, a banana, a carton of skim milk, yogurt and a protein drink. At the beginning of my hospital stay, I had to be fed. The nurse assigned to me that morning would open all of the cartons, insert straws, squeeze ketchup over the pocket of powdered scrambled eggs and lift the food to my mouth.
Every now and then a nurse would apologize for the food. “No need to,” I would say. “I completely understand that this is a hospital, not a hotel.” Even so…
Every few weeks a dietitian would pay me a visit. She would ask if there were any changes I would like to make. I thought that was extraordinarily attentive.
“I wonder if I could have Cream of Wheat one day and oatmeal the next?”
“Not a problem,” she said, jotting the request down on her clipboard. “It may take a few days,” she warned.
“Not a problem,” I replied.
A few days later my breakfast tray appeared with two bowls of hot cereal instead of one. One was Cream of Wheat and one was oatmeal. This went on for a week. When the dietitian showed up again, I explained to her what happened.
“Not a problem, she said.
The next tray came with two bowls of Cream of Wheat. I explained to the dietitian what happened and suggested that we might try for Cream of Wheat one week and oatmeal the next.
“I'm sure it can be arranged.”
The next day my breakfast tray came with one bowl of Cream of Wheat. I thought we had finally gotten it straight; that is, until my lunch tray came with two bowls of oatmeal. I gave up.
I had an electric toothbrush. In the beginning I was so weak that I couldn't press the button to start the motor, even with my thumb. Then one morning I surprised myself when, pushing down on the start button, the toothbrush began to whirr. This was by no means unusual, trying something over and over and over again until finally I did it. As I said, watching myself improve was like watching grass grow.
As my therapists gradually made inroads into my several incapacities, I got to the point where I could feed myself. Each morning I would request a bib and go at it with utensils whose handles were as fat as the handgrips on a bicycle. Normal knives and forks were beyond me. Eventually I got to the point where I could open all of the liquid containers on the tray except for the tomato juice. It had a lift-up tab. My fingers were not up to the job. I managed by inserting a knife under the tab and twisting the fat handle until the seal on the can broke. I got away with this technique for a couple of days until a nurse, horrified at the sight of someone without finger mobility fussing with a knife, put a stop to it.
I had therapy every day. Sometimes it would begin in my hospital bed. This involved pulling my arms back until I complained. Then the therapist would pause until the pain subsided and pull back a little more, each time trying to increase my range of motion. She would do the same with my legs. That was always a bittersweet moment. It was essentially the same stretch that caused my accident.
In the early days at the hospital, even though I was in a motorized wheelchair, the therapists were leery of allowing me to drive around the halls on my own. The spinal cord injury ward was on the second floor. The gymnasium was on the ground floor. I would need to take the elevator. My therapists were afraid that, like Charlie on the MTA, I would become trapped. So I had to take a driving test that included changing floors. After two months, I managed to pass the test. Then I could drive myself to the gym and even to the swimming pool.
There was a recreation therapist who planned outings for us. These included going to a rifle range, a trip to the seaside to go surfing, or a trip to the movies. Movie nights were the most popular. The tastes of my fellow SCI sufferers ran to horror movies and war movies. Neither genre was up my alley. I used that as an excuse for not joining them. The truth, however, was far more mundane. I was afraid to go outside in a wheelchair.
The nurses would often ask me at the end of a particularly nice day if I had gone outside. I always said no. Nancy had taken me outside once. I was surprised at how anxious I was. There were curbs that I could easily misjudge and tumble over. I knew that any shock like that could paralyze me forever. When I did go out, I treated the sidewalk curbs as if they were cliff edges. I was so concerned about them that even the shortest trip exhausted me.
I finally had to bite the bullet when an appointment was scheduled for me in the VA hospital in Jamaica Plain. I had to leave the hospital, make my way to a wheelchair-accessible van, be driven to JP, be unloaded, and then wheel myself down unfamiliar corridors and up unfamiliar elevators to the eighth floor. Nancy was home in bed with the flu. But it wouldn't have mattered. This was something that I thought I had to do on my own sooner or later.
Everything had been going along perfectly. My appointment (with audiology) began on time. I was tested for hearing aids, found needful, and the VA ordered a pair on my behalf, just as they had ordered eyeglasses a month earlier. Both appliances were courtesy of the American taxpayer, a courtesy that I accept with gratitude and in hopes that my own tax paying has been able to return in kind.
I made my way back down to the first floor and to the dispatcher’s desk, a sense of confidence building in me. I had managed everything that needed to be managed in completely unfamiliar terrain and in a wheelchair.
When I had come from West Roxbury to Jamaica Plain, the vehicle that brought me was a large one. It had an elevator on the side that lifted my 230-pound body sitting in my 432-pound wheelchair with ease. The vehicle that arrived to take me back was a smaller van. This vehicle’s elevator was at the back. I guided myself carefully onto the platform. The driver pressed a button and the platform slowly lifted me to the floor height of the van. I eased the wheelchair forward. I had been looking down to make sure I was guiding the chair properly. At the last instant before entering the van, I happened to look up just as my forehead smacked against the roof of the vehicle. Without thinking I put the chair into reverse and backed away. Then I broke out in a cold sweat. If I had made a mistake and pushed the joystick forward, my neck would have bent straight back just as it had when I fell, causing my spinal column to bite into my cord. If I had pushed the joystick too far back, I would have toppled off the platform and fallen several feet to the asphalt. Neither happened.
“You have to tilt your chair backwards,” the van driver yelled. “You are too tall.”
“Get me down,” I demanded, beads of shock sweat forming on my brow.
“Tilt it,” he ordered.
“Down,” I snapped back. I was shaking.
He shrugged his shoulders and lowered me.
The dispatcher came out to see what the problem was. The van driver explained that I had refused to tilt my chair.
“My chair doesn’t tilt enough,” I said, lying feebly. “I need a van the size of the one I came in.”
They exchanged glances. No one argued. My distress was apparent. They arranged for me to go back in a larger shuttle. I suppose it's hard to argue with someone in a wheelchair. For me it was a hinge moment. Normally, I am very submissive when I am at a medical disadvantage. I tend to relinquish decision-making to those in authority. If a doctor or nurse tells me to do something that I think is against my own sense of what needs to be done, it is my own sense that is quashed. I surprised myself by refusing to obey the order of the van driver to tilt the wheelchair back. That was new. Something had changed in me.
For several days I pictured my head snapping back against the roof of the van. I was certain it would have killed me. Clearly, I was making more of the incident than it deserved. It would have been an easy thing to simply tilt the chair backward and glide forward. But that isn’t what happened. What happened was that at one moment everything was fine and in the next I was on the edge of catastrophe. This, of course, had happened to me before. How could I possibly not think that it would happen again? The universe lives in a uniform sea of background radiation left over after the Big Bang. I was living in a sea of anxiety that echoed my own Big Bang.
“Some people are only in it for the money,” a nurse confided in me one night. “Others really want to help people.”
I tried to separate the good guys from the bad. I couldn’t do it. After all, it was hard to be critical of someone who is willing to wrap up your bowel movement in a roll of paper called a “chuck,” toss it (maybe that’s how it got its name), and then clean you up afterward. They all did that. Frankly, I didn’t care what they were in it for. They were helping me. I didn’t feel as if I were in a position to make fine distinctions.
Caregivers were always in a hurry.
“I got two patients after you,” my caregiver du jour would warn before laying a helping hand on me.
The reason for the rush was that there were always more patients than there were caregivers. There are 18 beds on the ward, and during any one shift between six and nine caregivers, two to three patients per caregiver. The situation was often made worse by a “one-on-one.” This was a patient who was demented and had to have a nurse with him or her at all times, thereby increasing the ratio for the others to three to four patients per caregiver. It was no wonder everyone always felt rushed.
To make matters worse, a caregiver has to remember the specific needs of each patient. Since each patient has a different set, the to-do list for each patient is different. These lists are long. They are ad hoc. They vary depending upon whether it is day or night. It is easy to forget something.
Here is my nightly to-do list:
While I am still in my wheelchair, take off my sweater, shirt, and abdominal binder, a wide elastic band that fits around my torso like a corset to help keep my blood pressure from dropping and to help me breathe.
Release the safety belt on my wheelchair.
Put a Hoyer sling around me.
Raise up the head of my bed so that my back won’t hurt when I am lowered onto the mattress.
Attach the Hoyer sling to the overhead hoist, lift me up, and maneuver me over the bed.
Lower me into the bed, taking care to place me appropriately off-center depending on whether I am to face the window or the wall that night.
Put a hospital johnny on me.
Take off my shoes, sweatpants, and the support stockings that guard against low blood pressure.
Roll me to the appropriate side of the hospital bed and put a pillow under my back to hold me in place. (Then come back and roll me from side to side every two hours throughout the night to protect me from bedsores and a good night’s sleep.)
Put Isotoner gloves on my hands to prevent swelling.
Put a squeezing device on each hand to allow me to exercise my frozen fingers while I’m in bed in an attempt to bring some semblance of flexibility to them.
Put on bed boots to prevent my ankles from drooping.
Cover me with a sheet and blanket.
Place the call bell on my chest in case of emergency.
Place the wall-hung TV at just the right angle for viewing.
Close the curtains that surround my bed just so far and no farther, so that the clock on the wall is visible.
Turn out the lights over the bed.
These steps do not have to be done in exactly that order, but each one has to be done. And each one has to be done quickly because there are two other patients waiting. A skilled caregiver familiar with my routine could manage the list in half an hour.
Forgetting one of the steps was par for the course—the boots, for example, or the gloves. To prevent that, I had to silently monitor the caregiver and, when necessary, fill in the gaps, walking on eggshells so as not to appear demanding. They have a name for it: “self-directed care.” It is a euphemism for nagging the caregiver.
Going to bed was always a stressful time for me. For one thing, I was wound up from all that silent monitoring. And in any case I had to wait for the evening meds. I was generally put to bed by 7:30 PM. The evening meds came anywhere between 8:30 PM and 10 PM. That’s when the TV was useful. Most of the time I watched Red Sox baseball because it was a way of putting myself to sleep. I rarely got beyond the seventh inning. In the morning I had to ask one of my roommates who won.
Adding to the time a nurse had to spend on each patient was the need for the nurses to make careful notes at the end of their shifts. This meant that the worst possible times to need help were when the old shift was ending and the new shift was coming on. I still suffered from pain in my coccyx, just as I had at Spaulding. Lying in one position for too long could bring it on. To relieve it, I had to be rolled from one side of the bed to the other. Lord help me if the onset of the pain coincided with a shift change. I would ring for the nurse and a voice on the intercom above my bed would say, “We’re working on assignments. We will be with you as soon as we’re done.” That could mean anywhere from 15 minutes to 45 minutes. There was no help for it. You simply lived with the pain until you didn’t have to.
By my reckoning, the safest way to put a patient into or out of bed with a Hoyer lift was with two people. I was told it was also the manufacturer’s recommendation. Most of the time one nurse would manage it, always with skill. I can't remember a single accident. The nurses developed a strategy to deal with two-person situations. They were constantly calling from one side of the room to the other asking one another if they needed help. Or else they would leave the room to find a partner. At lively times, say at bedtime or breakfast, a kind of ballet developed with nurses briefly abandoning their own patient to scurry across the room to help a colleague.
It would have been far better, of course, to hire more nurses, but in fact, in past years staff had been laid off or else not replaced when someone retired. This was because of a chipping away at the VA budget by Congress. I wouldn’t be surprised if the 2014 VA bureaucratic scandal wasn’t partially due to this erosion of support. The VA has its enemies, and a typical strategy is to cut back on support. That produces a lower level of performance, and that in turn allows the critics to cut back even more, using as justification the lower level of performance that they themselves engineered. Even so, the figures show that the VA is more efficient and its administrative costs far lower than anything in the private sector, profit or nonprofit.
I was surprised at how little the staff knew about each other’s lives outside the hospital, an unwanted side effect, I'm guessing, of short staffing. Maybe they were always in such a hurry to meet the demands of their patients that they had precious little time to linger by the water cooler. The idea of a retreat where they all got together was simply out of the question. I found that many of them led very interesting lives.
For example, my pool therapist was a slight woman in her mid-50s. Her face had the clean, evocative, weather-beaten look of an Andrew Wyeth farm girl. She had the slim but powerful legs of a professional swimmer. I suspect that in her lifetime she had won her share of races. But whenever I asked, her answer was lost in a modest mumble.
During our twice-a-week pool sessions, I learned that she had an adopted Russian daughter who was an artist, that her husband was also in a wheelchair, that she had been a synchronized swimmer, and that she was an amateur artist. She told me her specialty was horses. I asked to see pictures of her work. One day she brought in an iPhone photograph of a painting she had done. It was of a troika—three horses and a driver. I wanted a tangible memento of my stay in the hospital, so I bought it. It was the first painting she had ever sold. At the weekly CARF meeting I passed around a photograph of the painting. The attendees were astonished. They had no idea. And this was a woman who had worked at the VA facility for over 30 years.
In fact, it was typical of the therapists and caregivers that I came in contact with that they led interesting lives their colleagues knew nothing about. One of my principal therapists, Jess, had a PhD in physical therapy and had earned a black belt in one of the martial arts when she was 16 years old. She never used the title “Dr.” She was five foot one and looked as if she had earned her black belt last year.
Jess’s colleague, Barbara, was part Blackfoot and part Abenaki. She went regularly to powwows in New York and Maine. And every year she went to Odanak, a largely Abenaki Indian reservation near Quebec City. She made beaded hairpieces after the fashion of her ancestors and she was always singing outré show tunes like “Someone in a Tree” from outré musicals like Stephen Sondheim’s Pacific Overtures. Her favorites were more mainstream, My Fair Lady and Les Miserables. Her all-time favorite song was “Wouldn’t It Be Loverly.”
Teresa, my occupational therapist, was a modern dancer as well as a marathon runner. To prepare for a marathon she once ran from the VA hospital in West Roxbury to her home in Somerville, a distance of over 11 miles. It would take Nancy and me 45 minutes by car. She ran in a Thanksgiving marathon in Philadelphia and made it to the finish line in just over four hours. That’s 9.25 minutes per mile.
One of my nighttime nurses had been a naval gunnery officer. This career around he wanted to help people. One night I complained to him that I was taking a drug for depression that I didn’t think I needed.
“Why don’t you think you need it?” he asked.
“Because I’m not depressed,” I replied.
“See?” he said. “It’s working.”
Another nurse had been a map expert in the Army. She served in Vietnam. She raised “American Beauty” chickens for a hobby. She thought they were beautiful.
One night she told me her rooster had been in a fight. She didn’t know if he was going to survive.
“If he dies, will you bury him?” I asked.
“Heck no,” she replied. “I’ll eat him.”
I noticed that “heck.” She and her colleagues, unlike their patients, were careful not to curse.
A nurse’s aide, Brian, was going to school to become a graphic artist. At my insistence he showed me a portfolio of his work. It was like the graphics in the Batman novel, The Dark Knight, which is to say pretty good.
Another nurse was addicted to self-actualization books and was constantly pursuing hard to follow advice like “Don’t be your own worst enemy.”
Yet another, Regina, wanted to open an import business with products from Haiti, her native country. On other days she told me she was going to move back to her seaside home in Haiti. She had a remarkable talent for changing her hairstyle. She did it at least once a week and sometimes twice. She did it with hairpieces. I practiced my French with her.
One of the most skilled nurses, Joan, was a Reiki practitioner who went from patient to patient and offered sessions whenever she had time. Over the course of four months I got two sessions. Although there is no evidence that Reiki does anything for anybody, it is, like virtue, its own reward. The sessions felt wonderful.
Joan’s spouse was a master chef who had worked at some of Boston’s upscale restaurants. He had invented a new food product and was in the process of marketing it. Their hobby was eating out.
During the day the nurses frequently sat in front of desktop computers making notes about their patients. One of the nurses, a big hulking male, used part of that time to surf websites that sold women’s clothes. As I rolled past the nurses’ station in my wheelchair I occasionally caught glimpses of him clicking through photographs of high heel shoes. No one gave a damn.
There was, of course, a hierarchy of caregivers on the ward beginning with the doctors at the top, followed by the nurses and then the nurses’ aides and finally the students who came from surrounding nursing schools to acquire hands-on experience in a real-life practicum.
During the morning chaos, a wall of curtains surrounded me. It gave me a modicum of privacy while I was being cleaned and washed after a bowel movement. That space was sacrosanct. No one could enter it unless he or she was a doctor. When the doctors did—they almost always came in pairs—the nurses would stand silently by or else offer to help a fellow nurse behind a different set of curtains.
One morning a VA psychologist, unannounced, poked her head through the curtains looking for me.
“We’re not quite through yet,” snapped my caregiver.
The psychologist withdrew sheepishly while the caregiver in a voice loud enough to carry said, “What does she think the curtains are there for?”
Dr. Jayawardena had a smile like a lighthouse beacon. She turned it on when she came to my bedside promptly every morning around 9 AM accompanied by another doctor, either a resident or a visiting fellow—someone temporarily there to hone their SCI skills.
Dr. Jayawardena was a superb doctor. If I showed the slightest signs of a urinary tract infection, something that I was particularly susceptible to, she dealt with it immediately, prescribing an appropriate antibiotic as a cautionary measure. She was careful not to overdo the prescription and make me less responsive to the medication. But she was also very good at balancing that against the probability of my getting a UTI. During my four months in the hospital I think I suffered just one such infection.
She was always being proactive. Once when I reported that my right leg was slightly swollen—I was at home at the time—she ordered an ultrasound. Since I was going in to the hospital for a therapy session, she ordered the probe for that very day. A blood clot was discovered. Less than six hours had gone by between my reporting the swelling and the diagnosis and treatment.
Dr. Jayawardena was as self-effacing as she was competent. She is a good part of why the SCI ward at the West Roxbury VA has a reputation for being one of the best in the country.
The ward where I spent 4½ months of my life was laid out like a big rectangle. Along the sides of the rectangle were the rooms. Most of them held 4 beds. Some held 2 beds. One or two held only a single bed for patients who needed to be isolated for whatever reason. I never made it to one of those. I did my time in a 4 bedder.
Behind each bed was a wall loaded with equipment—suction pumps, all manner of dials, telephone jacks, a blood pressure unit, a finger cup that took one’s pulse and one's temperature. The nurses used these to take vital signs. Curtains or no, I could always tell when someone's vital signs were being recorded. The blood pressure machine played 2 notes when it was switched on. They were a fourth apart. It reminded me of the refrain the Wicked Witch of the West’s soldiers chanted in the Wizard of Oz. I used the suction pump instead of water to rinse out my mouth when I was able to brush my teeth. As far as I could tell, throughout my hospital stay, I was the only one who used it.
At one end of the rectangle were the nurses’ stations. At the other end were the offices of the doctors, the social worker, the case manager, the psychologists and so forth. Dr. Jayawardena's office was at the end of the corridor outside my room. All I had to do was guide my wheelchair out of the room and make a right. Her door was almost always open. If I appeared, she would stop whatever she was doing and give me her full attention. What’s not to love?
But the heart of the place—if you were willing to let it be—was two floors down. The gymnasium was a large room, 30x70feet, filled with an array of exercise equipment, including a wide variety of bicycles, some for the hands and arms, some for the feet and legs and some for both. There were arm-stretching pulleys, weightlifting machines and brightly colored plastic covered dumbbells. These were arranged on a rack, the smallest at the top (1 pound), the largest at the bottom (5 pounds). There were mats on both sides of the room. These were painted a cheerful blue. They were on a platform that could be raised or lowered with a foot pedal. Above them were the familiar tracks of the Hoyer lifts. On some days I could see several patients being raised or lowered onto the mats like party balloons.
The spinal cord injury ward on the second floor of Building 2 was where the doctors tended your medical needs to ready you for the gym. It was where the nurses cleaned, fed and rested you to make sure you got to the gym on time. But the gym was where the critical action took place. This was the place where the physical and occupational therapists restored as much of you as they could.
If your hands were claws, they would try to get you to make fists. If your arms hung from your trunk like the dead branches of a tree, they would try to bring them back to life. If your legs were growing cold, they would try to fan the embers. If the doctors made sure that all your parts were in working order and if the nurses helped you manage the daily routines of your life, the therapists were shaping your future.
They set goals for you. If you met their goals, they set new ones and so it went until the goals they set were beyond what you could do or else you had met them all. In either case when they couldn't do any more for you, they would send you home. I always went to these sessions with trepidation. It was as if I were approaching the Delphic Oracle, fearful of what she was going to tell me.
Obviously I met their goals. I didn't want my rehabilitation to come to an end. But I went one step beyond. I tried to surpass their goals. I thought that if I did better than they asked, then they would know that I meant business. I wanted them to invest in me.
Of course, investing in me went farther than meeting goals. I thought that if they could somehow see that I was worth saving, saving me would be that much easier for them. So I not only met their goals, I let them see who I was. I told them about my first marriage, my divorce, my children, my trombone. I gave them advice about getting married— one of them was engaged—about being married, about the damage that words said in anger do.
I was interested in their lives. I wanted to make friends with them as well as being their patient. Looking back on it now, I suppose there was an element of selfishness in all of this. But I don’t really think so. They were trying to make me better and I was grateful to them for that. A highly “wanted” side effect was their investment in me.
And for some of them there was another dimension. They saw helping me as a way of giving back to those servicemen who had sacrificed so much. This was an element missing, I think, in the private sector; namely, the sense on the part of the hospital staff that they were in some way recognizing sacrifices made on their behalf.
It was not uncommon for me to be stopped in the corridor by someone, usually a workman, who would say, “Thank you for your service.” It took me by surprise, at first. After all, the service that I had performed was nothing compared to those whose lives were on the line. I gradually learned how important it was to people to say thank you. And so when someone said to me, “Thank you for your service,” I replied, “Thank you for saying so.”
In a sense, then, by doing everything they could to make me as whole as possible, my therapists were saying to me, “Thank you for your service.” Now I wanted to be one of the stories they told when they recalled past successes for their peers or students or friends or interns. Here was a breed of human being who, along with everyone two floors up, was dedicated to making me and others like me, to paraphrase the Marines' slogan “as good as we could be.” Unfettered by financial chains they were able to focus exclusively on healing me. Again, what's not to love?
My therapy started by me sitting on the edge of a mat, just the way it did at Spaulding. My primary therapists were Jess Allen and Barbara Brintnall, though there were others who worked with me. On that first day they told me to plant my feet firmly on the ground and try to balance for one minute. After a few seconds I would begin to list to one side. Both therapists grabbed me before I fell over. This went on for a month with me tilting to one side or the other like a sailboat in a crosswind. Then one day it was as if a switch had flipped inside me. I could balance for as long as I wanted. I could lift my arms off the mat and still stay upright. My therapists could leave to go to the bathroom or the water fountain. No worries. I felt perfectly normal. It often happened like that. Long periods of nothing followed by something.
As the days went by I gradually caught on to Barbara’s and Jess’ game plan. It came to me while I was looking at the control screen on my wheelchair. My wheelchair is rather sophisticated as wheelchairs go. It is a standing wheelchair. It is an expensive piece of equipment. If I had to buy one myself, I would pay something like $7,000. The VA gave it to me. It comes with a whole host of positions. For example, if I select a certain icon and push the joystick forward, my chair rises straight up. It is very useful for reaching things on a top shelf. Another tilts the entire chair back. This is perfect for relieving pressure on the coccyx, thereby avoiding pressure sores. Yet another tilts just the back of the chair. Yet another raises the footrests. Using these two together is great for raising the legs up to combat edema, something that can happen when you are sitting in a chair all day. Each of these is a separate and independent function.
There is one more that is more complicated. It raises the footrests, then tilts backward, then raises up until the seat has disappeared and then tilts slowly forward. When it is finished, it has used all the separate functions one after the other in order to get me into a standing position, fully upright with my legs underneath me supporting my full weight. This is an incredibly important function since it lets me go through an entire series of aerobic exercises designed to strengthen the muscles I need for standing; exercises you can’t do in a non-standing chair. Once I finish the exercises, I pull the joystick back. The machine goes through all those functions in reverse. The seat reappears and I am sitting. My therapists told me to do this routine once a day. I did it twice.
One day it came to me that the chair's ability to stand me up is simply a combination of all its simpler functions running together one after the other. That's just what my therapists were doing. They had broken down the act of walking into its basic components. Once I'd mastered each one, they would ask me to put them all together.
To begin with, if your quads don't work, then forget it. If, like mine, they do, that's still not enough. You have to get them strong enough to support your body. This happens as a result of exercise. My therapists told me that when I was in bed or in the wheelchair I should always be moving some part of my body. I followed their advice to the point that at night under the covers I must have looked like I suffered from St. Vitus Dance.
With all this focus on walking, I had lost sight of a very simple fact: you can't walk if you can't stand up. Learning to stand was the hardest part of my training. I didn't realize how much effort goes into that simple act until I couldn't do it. The first thing you do is plant your feet wide apart and flat on the ground. Then you place your hands on the nearest support if there is one, usually armrests. Next you bow your head over your feet. The position is called “nose over toes.” Then you engage your quads. You start lift-off. Then with nose still over toes you straighten your legs, pushing your feet hard into the ground. Once your legs are straight, you lock your knees. Then you tighten your buttocks in order to bring your hips forward over your feet. Who knew standing up was so complicated? The blow to my spinal cord had made me forget all of it.
If you can't walk unless you can stand, it is also true that if you stand, sooner or later you are going to have to sit down. Sitting down is almost as hard as standing up. For best results I need to find a place to put my hands, an armrest or a tabletop. The first thing I do is lean forward as if I were taking a bow. Then supporting myself with my right hand—my left wasn’t yet up to the job-- I slowly lower myself into my wheelchair. This is supposed to be a controlled lowering. When I first started, I would flop down hard.
“That's okay,” my therapists would say, though it obviously wasn't.
The process took a very long time, extending over the 4½ months that I was an inpatient and continued for another 15 months when I was an outpatient. Part of the reason why it took so long was blood pressure. I needed to be able to stand up without the wild fluctuations in my blood pressure caused by my not having stood up for nine months.
To acclimate me to what was for me a higher altitude, I was strapped into a device called a standing frame. It was a chair with a lever attached. The therapist pumps the lever. The chair gradually unfolds pushing me closer and closer to an upright position. The therapist takes my blood pressure at intervals on the way up.
The first time I tried I reached a meager 40% from a sitting position before I felt dizzy and had to be lowered. My blood pressure registered 76 systolic. I had started at 116. A 40-point drop is considered a deal breaker.
“That's enough for today,” said Barbara bringing me down with several swift pumps of the lever.
Those moments were so discouraging. I wanted to walk and I couldn't even begin to stand up without feeling dizzy. Barbara and Jess would reassure me, telling me that Rome wasn't built in a day. My experience was that the process of recovering was like climbing a hill in the rain. It was always three steps forward, two steps back. There was no such thing as a smooth upward trajectory.
Even when I made progress, it was so small that I barely knew it had happened. I had to remember where I was on the first of the month and compare it with where I found myself at the end of the month. Recovering from a spinal cord injury involved constant application of the four P's: Persistence, Perseverance, Perspective and Patience.
The gym I worked in has two sets of parallel bars. I had been working on the separate pieces that, added together spelled standing, for long time. Now the time came to see if I could put them all together. To do this I was told to place my wheelchair at right angles to one of the parallel bars. I was instructed to take hold of the bar and pull myself up into a standing position. This was just a start. In the real world there would be no parallel bars in front of me whenever I needed to stand.
I did what I was told. I placed my feet flat on the floor. On the count of three I bowed my head over my feet and pulled hard. Nothing happened. I pulled harder. I could feel myself begin to shift. I got about a quarter of the way up when I froze. I couldn't move. The moment seemed to go on forever. I fought off the urge to fall back into my wheelchair. It would have been so easy. But it would also have been a huge setback. Ever so slowly my legs began to straighten. As soon as I could, I locked my knees, squeezed my butt and pushed my hips out over my feet. That was it. I was standing on my own for the first time in over a year.
Moving myself beyond that frozen moment was one of the hardest things I think I have ever done. I was telling my legs to move and they were simply not listening. I'll never learn to do this, I thought to myself. But I had to. There was no way I was going to walk if I didn't master this simple but excruciatingly hard maneuver. I worked at it for several months. Giving up was not an option. Finally, it happened. Like a light switch, it was off and then it was on.
An important obstacle to walking had been removed. My therapists immediately filled the vacuum. At my next session I was directed to the bathroom where they had previously positioned a shower chair over the commode. They instructed me to place my wheelchair at right angles to the shower chair. My job was to make use of a grab bar on the wall in front of me to go from a sitting to a standing position. Then I was to pivot clockwise and sit in the chair. Once that was done I was told to do the procedure in reverse and transfer back to the wheelchair. I was told to repeat this operation three times.
“Why are we doing this?” I asked.
“We're going to teach you how to transfer from your wheelchair to your bed and back,” Barbara said.
“I don't think I can do it,” I wavered.
“I think you can,” Barbara retorted. “Now stand up.”
Those were pretty high stakes. If I could do it successfully, then it would no longer be necessary to airlift me in and out of bed in the morning and at night and whenever “accidents” called for it. I stopped complaining. Like the Nike ad said, I just did it.
That was the major breakthrough toward normalcy. From that point on I no longer needed to use the overhead hoist. I could get in and out of bed from my wheelchair or from my bowel chair. A major obstacle to leaving infancy behind me had been removed. It had taken a year and a half.
All this time that I was working on sit-to-stand and back again, I was also working on stop-blood-pressure-from-plummeting. It took several tries over the span of a month before I could move from 40% to 70% in the standing frame without a precipitous blood pressure drop. Eventually I made it to 80% and finally all the way.
When I could stay upright, Barbara would bring out a deck of cards. We would play a game to get my mind off standing. When, at long last, I was able to stand for five minutes on three separate occasions without my blood pressure wobbling out of control, then and only then was I allowed on the Locomat. My progress was a bit like playing a videogame. I had to defeat adversary after adversary before rising to the next level, in this instance the Locomat level.
There are only four such devices in all of New England. The one at the VA hospital was on the same floor as the spinal cord injury ward. In fact, it was next door to my primary care provider, Dr. Jayawardena. That was a comfort.
The purpose of the machine was to remind my legs how to walk. I was strapped into a harness around my middle and cinched as tightly as possible. If this is what wasp-waisted Victorian ladies had to endure, it is no wonder neurasthenia was their favorite neurosis. Using the harness, Jess and Barbara, literally hung me from the top of the Locomat so that my feet were inches above a treadmill. This caused the harness to dig deep into my groin. While I dangled, they attached machines to my thighs. Their function was to mimic the action of walking. When all the strapping and harnessing was done, I looked like an Imperial storm trooper. I was gradually lowered onto the treadmill, which was then set in motion. I “walked” in this fashion for half an hour. Then I was unstrapped, lowered into my wheelchair and allowed to return to my room where I sat motionless for an hour, exhausted, while the blood made its way back into my groin.
Jess had attended a conference where one of the major results presented was that a patient’s chances of improvement were directly related to the repetition and intensity of an exercise. Jess told me this. Consequently, whenever I was on the Locomat, I did my best to stay on longer.
After 30 minutes had gone by in a session I would say, “I can handle another 10 minutes.”
“Maybe you can,” Jess would reply, “But we can't. We have another patient after you.”
“How old is that patient?” I would snap back. “I'm 80 years old. I don't have that much time.”
Jess would turn off the machine.
Locomat training was meant to remind my brain how it used to walk and to stimulate my body to re-implement those lost traces. After several sessions with a harness, the time came to try it without a harness and without the motors. In the beginning I didn't know when to move my feet. Jess and Barbara sat on either sidethe of the treadmill where my legs were in easy reach. Holding onto my shoes, they intoned “Step. Step. Step.” With each command I imagined I was moving one foot forward. In reality Jess and Barbara were doing the work, literally hauling one foot forward, then the next and then the next. Surprisingly, at least to me, the next time we tried it I knew precisely when to move my feet forward. This session was much easier on the therapists. Instead of hauling my feet forward they simply had to keep my feet from bumping into one another.
I mentioned this to one of my SCI doctors, Dr. Powell. He wasn't surprised. He said that the evidence seems to show that feeling a human touch is more productive than strapping motors to the outer thighs and letting them run. So, intenisity, repetition and the human touch were all factors in improved performance. All of these were wrapped up in what Jess Allen and Barbara Brintnall were doing for me.
Each one of their exercises was a piece in a puzzle named “Walk with a walker.” Each day in the gym accounted for one more piece of the puzzle. Putting them all together properly dominated my life. I was working up to that as yet uncertain date in the future when I would actually walk unfettered by harnesses and safety belts; that is to say, when I would walk somewhere other than inside a hospital.
To prepare us for this new life in the real world we were required to spend overnight on our own in an apartment at the hospital, a half-way apartment, as it were. The exercise was meant to build our confidence in one another and to reveal any weaknesses in Nancy's training and my psyche. The apartment was on the first floor of the hospital just around the corner from Urology. We had been shown it earlier. We thought it dreadful. A kitchen and a bathroom separated the living area and the bedroom. The kitchen looked as if it were straight out of a 1950s magazine ad for Old Dutch Cleanser. The rooms seemed gloomy, the view worse. The swimming pool roof was just on the other side of the window. It was covered with pebbles. An array of solar panels stood amid the pebbles. They looked like robots sunbathing on a rocky beach. They were actually keeping the swimming pool beneath them at a constant 88°.
At the beginning of our weekend ordeal—it was after the Friday evening dinner hour—I was supposed to wheel myself into the apartment. A hospital bed would be waiting in what passed for the living room. Nancy with the help of a portable hoist would lift me out of my wheelchair and deposit me in the bed. She would undress me and get me ready for sleep, including putting on a condom catheter. She would sleep in a bedroom two rooms away. In the morning she would lift me out of bed, put me on a bowel chair and wheel me into the bathroom. Then she would clean me up, put me back in bed, and dress me for the day. In other words, she was expected to be “Nurse for a day.” It made a lot of sense. Nancy would be prepared in case there were snowy days and a scheduled caregiver failed to show up. But that didn't make it any less stressful.
About a month after my accident, just about the time I moved from MGH to Spaulding rehab, Nancy spoke to her primary care provider at MIT. Nancy had great respect for her as a doctor, but she knew virtually nothing about her private life. She asked her doctor for advice, explaining what happened to me. The first thing her doctor did was write a prescription for Prozac with instructions to take it until she could find a good psychiatrist. Then she gave her the advice. She told her that her own husband had been incapacitated for 10 years. This was news to Nancy, of course. But it also gave great weight to her advice. The doctor told her that she would have to choose between being a caregiver and a wife. She could not expect to be both. She was right, of course. It is hard to be an equal partner with someone that you have to bathe, provide bowel care for, feed and dress. It's a bit like being intimate with a crash dummy. It just doesn't work.
Living together in that apartment seemed to portend a nurse/patient relationship that Nancy and I were not anxious to enter into. It would change the way we thought about one another, perhaps irrevocably. Lurking in the shadows of our angst was the thought, as yet unexpressed, that this new relationship would break the back of our old one. Consequently, we parried suggested weekend reservations for the apartment with excuses. Nancy had to go to the doctor. I had a conference call with a colleague in Amsterdam. Finally, the hospital staff made it clear that unless we slept overnight in that chamber of portended horrors, they would not release me from the hospital. They held all the cards.
Oddly enough, when we got there for real, the place didn't look half bad. It even bordered on pleasant. We realized that when we originally inspected the apartment, we were looking at it through lenses labeled “we-are-afraid-of-what-will-happen-to-us-when-we-are-left-on-our-own.”
The night passed without incident. The next morning the nurses in the SCI ward were uncommonly interested in how Nancy had done. They had a vested interest in her success. After all, it had been a kind of test, both of Nancy as a student and the nurses as instructors. She performed as if she had been doing it for years. Everyone was happy. The hospital set 27 October 2015 as my release date. Nancy and I knew that the real test was yet to come.
Despite her success, as the date came closer, Nancy and I became more and more apprehensive. We couldn't help ourselves. Our anxieties fed off one another. The first night and the first day in a new apartment scared the hell out of us. What would we do if there was—God forbid—an emergency? Who would we call? One's mind always runs to extremes. And then, of course, there was that unspoken question. What about our relationship?
We raised our concerns with the social worker and the case manager about what would happen the morning of our first day away from the hospital. Everything would work out, they said. They spoke with the lack of enthusiasm that can only come from experiencing hundreds of similar cases. We, however, had no experience at all. The more they said everything would work, the more uncertain we became. As 27 October came closer and closer the prospect of independence petrified us. Then, we were given a reprieve, one that would delay our departure by a week and give us that much more time to chew on our angst.
In order for us to move into the apartment a certain amount of equipment had to be ordered. This included a hospital bed, an overhead hoist, and all kinds of supplies needed on a daily basis. The hospital bed was a bit too short. So the VA ordered an extension. The extension was not delivered along with the bed. The VA purchasing agent had sent it to the wrong warehouse. It is amazing how such a simple error dominoed into a week's delay. Until the extension was found the bed could not be delivered. Until the bed was delivered the contour-shaping mattress could not be delivered. Until the bed and mattress were in place the overhead hoist could not be delivered. In other words, for want of a nail the shoe was lost...et cetera, et cetera.
Nancy called the VA purchasing agent several times. Each time the agent insisted that the extension had been mailed to the proper warehouse. Finally, Nancy called the president of the company supplying the bed. He went looking for it personally. He inspected every package in his warehouse. It was not there. He phoned other warehouses in the vicinity. He found it in Billerica, an outlying town. It had indeed been sent to the wrong address, pace the purchasing agent's insistence. We were given a reprieve. The purchasing agent got off scot-free.
The Department of Veterans Affairs was the target of a massive scandal that began in 2012 when an ER doctor in the Phoenix, Arizona VA Hospital warned an incoming director that management was degrading the hospital's ability to render veterans the best possible care. A year later the VA's own Inspector General's Office issued a report backing up the doctor's mismanagement charges. The VA hospital in Phoenix claimed that veterans never waited longer than 24 days for a doctor’s appointment when in fact the average wait time was more like four months. A significant number of veterans had died waiting. A presidential candidate reviled the VA, calling it “almost a corrupt enterprise.” It was a major scandal that hurt the system. It seemed as if everyone in the country knew about it. When I mentioned to friends that I was in a VA hospital, they immediately began to commiserate.
The Arizona story just didn’t jibe with my own experience. I was benefiting immensely from the best of care at the hands of some of the most dedicated caregivers I’ve ever encountered. It must have been terribly demoralizing for them. If it was, they never said so. There was an unwritten rule that one never discussed politics.
It is very hard to get large institutions to run properly under the best of circumstances. Even if the system is well-designed, the wrong people in key positions can wreak havoc. I could understand what happened in Arizona. But I was worried that the country was on the verge of throwing out the baby with the bathwater. My admission to the VA Hospital in West Roxbury could not have been more different from the Arizona fiasco. I was admitted to the hospital within two weeks of applying from Spaulding rehab, although, truth told, luck played a major role.
In order to be admitted I had to prove that I was, indeed, eligible. That is to say, I had to prove that I had served in the United States Air Force. I had no idea where my discharge papers were. For all I knew they were lost in some move or other. My Air Force career had come to an end in 1965, a half-century earlier. How could we possibly prove my service? Nancy thought of a way.
As it happened the 10th Archivist of the United States, David Ferriero, was a personal friend. He had been a top administrator in the library at MIT. He and I had served on a committee together. Nancy knew him much earlier than I through a close mutual friend.
Nancy immediately thought of David. She e-mailed him on Thursday, June 12. By the following Monday at 3 PM copies of the relevant documents were in Nancy’s hands.
Thanks to those documents I was speedily welcomed into the family. After so much bad luck, I was now on a streak. Then one morning—I had been in the hospital for less than a month—Nancy received an official letter from the Department of Veterans Affairs. It said that my application for admission to West Roxbury had been rejected. We learned very quickly to toss those letters in the wastebasket. What we saw as time went on was superb medical care, superb nursing care and incredible therapy sitting alongside administrative departments that might, with justice, be called Slip-ups R’ Us. In all fairness the existence of an error free bureaucracy is as likely as a perpetual motion machine.
Nancy's encounter with the purchasing agent was not a one-off affair. Looking ahead we had to trade my car in for a vehicle that could accommodate a wheelchair. My roommate Pete had been through the accessible-van-buying mill. He referred us to a firm that dealt exclusively in such vehicles. He even gave us the name of his sales representative, someone he had a great experience with. The firm had a special arrangement with the VA. It is called a Federal Service Agreement (FSA). The government and the firm had agreed to a set price for the vans. Consequently, purchasing one did not require a bidding process. The advantage to the firm was that the agreement cut through a lot of red tape. For the government I assume the advantage was a decent price since it was the government that was footing the bill. For veterans whose injuries happened while they were on active duty, so-called service related injuries, the government paid for the van and for the accessibility package. For someone like me whose injury occurred while not on active duty, the government only paid for the package.
Nancy contacted Pete's sales rep. She had been a social worker and had worked in the VA system before she took this job. She knew the rules and regulations of the VA better than the VA employees she worked with. We ordered the vehicle two months ahead of our estimated departure date. Six weeks later it arrived at the lot. What didn't arrive was the VA's approval. Nancy called the purchasing agent, a different one this time. She told her that the van we selected had arrived, that we were scheduled to leave the hospital in a week and even though all the information for the purchase had been sent in well over a month earlier, approval was still not forthcoming. She emphasized that without the van it would be impossible for us to leave the hospital. The purchasing agent replied that Nancy had no right to select a vehicle, that our vehicle request was out for bid and that the firm we were dealing with had come in with the highest bid so that it was highly unlikely we would get the vehicle we wanted.
This was not going to be a minor glitch. The vehicle we wanted was the only one I could fit into. We took the purchasing agent’s complaints back to the rep. She told us her firm had not submitted a bid. They didn't have to because of their FSA agreement with the VA. Why in the world would the VA purchasing agent say they had? The sales rep called the purchasing agent's superior. The whole thing was straightened out within an hour. Still it was extraordinary that one person who was crucial to the procurement process could have gotten the facts so wrong and held things up for so long.
Unfortunately, this was not the end of our bureaucratic train wrecks. They continued even after we made the dreaded move to our own apartment. I had gotten the name of a good home care firm. It was a stroke of luck. After a few false starts the firm hooked us up with two caregivers who were superb. Everything was going along swimmingly until one day the head of the home care agency called and said that they had not been paid for three months. They said that unless the VA paid them for services rendered, they would have to discontinue care. They said they had called the requisite person in the VA hierarchy several times but she wasn’t returning their calls. It was my turn to do the heavy lifting. I called the person who was holding up payment.
I asked her what I could do to unlock the logjam. She said, “I’m very sorry but I cannot talk to you about your case.”
“Why not?” I asked.
“It isn't appropriate,” she replied. “I have 400 other cases to deal with. I can't single you out for special treatment.”
“I understand you’re overworked,” I said. “Perhaps I could say something to someone about that.”
“Don't you dare say anything to anyone,” she snapped. “I'm not overworked. I just shouldn't be talking to each patient who has a problem.”
She was very angry at this point, far angrier, I thought, than was called for by the occasion. There was no help for it. I plowed ahead.
“I have no choice,” I replied. “I'm calling you because you aren't returning the calls of the caregiver.”
“You'll just have to wait your turn,” she said.
“I’m afraid I can't do that,” I explained, trying to sound as calm as possible. “At 5 o'clock you will get up out of your chair, walk to your car, drive home, make dinner and put yourself to bed. I can't do any of those things without help. That's why I need to talk to you now.”
There was a silence. She came back on the line.
“I see what the problem is,” she said. “You don't have a primary care provider.”
“But I do,” I replied. “Her name is Dr. Jayawardena. She has been my primary care provider ever since I was admitted.”
“That's not what my records say,” she insisted. “I can't do anything about that.”
“Well,” I said. “What can I do to correct your records?”
“You'll have to call your doctor,” she said and hung up.
So, having made her faulty records my problem, she got up from her desk, walked to her car and drove herself home. In the end it was resolved, as, of course, it would be. But all that telephoning and all the stress that went with it would have been neutralized had she declared ownership of the problem. Quite the contrary, she made me own it.
I learned from these experiences that the quality of care the patient received at the VA hospital was directly proportional to the distance between the patient and the hands of the caregiver. Those people who could actually touch me, put a name to my face, take my temperature, give me my meds, stretch my limbs, teach me to walk again, they could not have been better when it came to caring for me. But as soon as I had to deal with someone who couldn’t pick me out of a lineup, the system could quite easily fall apart. Many people were extremely helpful over the telephone. But, at least in my case, two people who were crucial to keeping things going were not. They were huge roadblocks in a system where there is no ombudsperson.
I concluded something else about the VA bureaucracy, and perhaps this applies in every bureaucracy. Bureaucrats come in two flavors. They are either problem solvers or obstacle seekers. The former view problems as opportunities. The latter view them as reasons for doing nothing. In the case of my run-in, her reaction was not “I see what the problem is. Let me try to solve it.” It was “I see a problem. That's why I can't do anything. Next.”
It may be that obstacle seekers are not born but made. Four hundred open cases are a lot for one person to deal with. So obstacle seeking may well be a coping mechanism. By making her problem my problem she has one less problem to deal with. Whatever the explanation, obstacle seekers in key positions are a recipe for bureaucratic disaster. And, of course, getting under-functioning people out of key positions in the government is as hard as arm wrestling with a gorilla.