One can't live at the West Roxbury VA forever. Once the medical team deems you healthy enough to live on your own, they prepare you for the next world, in this case the one on the other side of my ward window. It was a frightening thought. I had to be weaned away from my security blanket, 24/7 care. What was worse, it meant putting myself into the hands of strangers who were more than strangers since Nancy and I had no idea how we would find them or whether, once we found them, we would all get along. But even if we were lucky enough to find first-rate caregivers, they wouldn't be around 24/7. The harsh truth was that Nancy would have to be prepared to take care of me when there was no one else to do it. This meant being confident enough to catheterize me, give me enemas, lift my 230-pound body into and out of bed using an overhead hoist, give me shots in my belly to prevent blood clots. In other words, Nancy had to acquire the same skills that the professional nurses employed when I was an inpatient.
This was precisely what I wanted to avoid, a fettered Nancy. I knew that if I weren’t able to achieve some kind of independence, Nancy would be forced to participate in my illness. She would become paralyzed in her own way just as I was paralyzed in mine. I had seen this happen with friends. I knew whereof I spoke. In fact, I had written about it eleven years ago in a book of children’s just-so-stories cum poems called The Pond God. Of course, I had no idea I was writing about myself 11 years later.
The God Who Walked in Straight Lines
Once there was a god who could walk only in straight lines. One day as she was walking, a large boulder stood in her way.
Since I cannot go around, she thought, I shall have to stand here forever.
Just then a god walked by.
Why are you standing in front of that rock? he asked.
The god, ashamed to tell the truth, replied,
Once an ancient God vowed never to sleep
until he reached the horizon. But the closer he came, the farther it seemed. Finally, unable to keep his eyes open a moment longer, he fell asleep in his tracks and turned to stone. This rock is that old man, and I am paying my respects.
Let me join you, said the other god.
The two of them stood in silence before the rock
until they turned to stone as well.
And that is how two can share a fate only one deserves.
The moral, “And that is how two can share a fate only one deserves,” was facing me in spades in real life. I even started thinking about how I might do away with myself if my condition didn’t change for the better. There weren’t that many options. Knives were out. Too painful and the aftermath struck me as being unkind. No wonder so many people bleed themselves to death in bathtubs, a thoughtful thing to do at such a desperate moment. I don’t have a gun and I don’t think I could get one without Nancy noticing. How would I explain asking her to drive me to a gun show? Poison was out. I have no idea how to come by strychnine on the QT. The best I could come up with was going outside in the middle of a sub-zero night and freezing to death.
I wasn’t thinking about suicide as an escape but rather as a favor. Suicide always struck me as redundant. Wait long enough and nature will do the honors. But in my case waiting wasn’t going to help Nancy. These thoughts were simmering on the back burner of my mind. I would bring them to a boil if I wasn’t getting anywhere. But first I had to give the other option, i.e. independence, my best shot.
Meanwhile Nancy was determined to give nursing me her best shot. She began by going to the pharmacy at the VA to get a supply of anticoagulants. They were injected through the belly. She asked if someone could show her how to do it. A young pharmacist came out front and offered to explain. Since I was there and needed a shot and since we had the needles with us, it seemed like the perfect time to ask him to demonstrate.
“Oh no,” he said. “I'm not allowed to do that.”
“In other words,” Nancy said. “You know how to do it, but you can't. I don't know how to do it, but I can.”
For a lot of the home care issues Nancy was basically kicked out of the nest and had to learn to fly on her own. For example, the pharmacist didn’t know how to do it after all. That was probably because he was never allowed to actually do it. His instructions to us were to pinch the skin two inches to either side of the naval, insert the needle into the top of the pinch and hold the needle inside for 10 seconds. When Nancy did it, it always hurt and it always left a bruise. When the nurses on the SCI ward did it, it never left a mark and the tiniest echo of a sting. Nancy went back to the ward. One of the nurses set her straight; no pinching of the skin and the best strategy is to get in and out fast, the faster the better. From then on my stomach was spotless and sting-free.
As reluctant as I was to leave the hospital, after a month in the new apartment I was even more reluctant to go back there. This complete about-face taught me always to second-guess my emotional state of mind. Here I was hating to leave and after one month, the thought of going back into that ward, that room, that atmosphere of constant attendance was repugnant. It must have been the entire time I was in the hospital. I masked the feeling because I had to. Now when I look back on those months and months of medical confinement, it strikes me as pure hell. That was not at all how I felt while I was living it. Rather I felt as if I were doing what had to be done, like a prisoner with a sledgehammer breaking rocks.
A family member coming to help cushioned our first 10 days in the new place. An engineer by training her instinct for making the apartment even more wheelchair friendly was ultra-practical. She bought thick plastic mats to smooth the way for whoever was taxed with putting me into the bowel chair and rolling me from my bed to the commode. She hung hooks in strategic places to secure bed bags for nighttime voiding. She and Nancy practiced lifting me into and out of bed with the portable hoist until Nancy felt secure about transferring me on her own. Inevitably she had to return to her family and there came that moment when Nancy and I were truly alone.
During that first week caregivers came only in the morning. Putting me to bed at night fell to Nancy. You could cut the pressure with a knife. A mistake could lead to another fall. That could be fatal or worse.
Nancy had three meltdowns. These stress-laden moments could come at any hour. For example, I would be wearing a condom catheter—we had not yet learned how to do without one. A half-hour before it was time to leave for a physical therapy appointment at the VA, I would void. The catheter would come off in midstream. I would have to be changed. I would rush to the bedroom in my wheelchair. Now came the heavy lifting, literally.
The overhead hoist, optimistically called the Freedom Bridge, consisted of an overhead track supported at each end by two 9-foot high columns, one on each side of the bed. A motor the size of a large microwave was attached to the track. It slid easily back and forth overhead so that it could be positioned above the bed or above the wheelchair. A strap dangled from the motor with a hanger-shaped bar at the end of the strap. To get me in and out of bed you first had to wrap a harness around me and then attach the harness to the bar. The motor was powerful enough to raise or lower 400 pounds. The control had two buttons, one for up and one for down. I usually operated the control while the caregiver guided me into position. Being lowered was like being both the bombardier and the bomb. I transferred between bed and wheelchair every morning and every night and on those frequent occasions when my condom catheter failed.
On this particular occasion, the one that caused her meltdown, Nancy put the harness around me. When she hoisted me up, I tipped back precariously. The harness had slipped out of its designated slot on the bar. Nancy had to lower me back into the chair and try again. We had already lost 10 minutes. This time the harness held. She guided me over the bed and grasped my legs to position me. I weigh twice as much as she does. Each leg is about 10% of one’s total body weight. She was struggling with 50 pounds. My legs slipped from her grasp. I rocked back and forth like the cradle in Rock-a-bye Baby. By now 15 minutes had elapsed. We had barely a quarter of an hour to wash and dry me, dress me and get me back into the wheelchair, get into the van and drive to the hospital. It was impossible.
“I can't do this,” she sobbed and sat down, head in hands, in the middle of the bedroom floor, overwhelmed by the task and awash with guilt that she had failed me.
I felt completely helpless. What could I possibly say?
“Don't worry, sweetheart. It will be all right,” when all along I wasn't sure that it would be.
“Don't cry, sweetheart,” when I knew she had to cry and the worst thing for me to do was to tell her what to do.
“We can miss the appointment,” when the appointment was the only thing that could get us out of this awful mess we were in and missing it she would surely see as a personal failure.
Meltdowns were occasions for silence. I simply didn't know what to say. All my life I have lived by the principle “When in doubt, do nothing.” That's what I did.
Fortunately, Nancy was seeing the perfect psychiatrist. She told him about the meltdowns. She came home and over dinner told me what he said.
“Let me see,” he summed up. “Your husband has suffered a devastating injury. You are now living in an apartment with someone unable to care for himself, an apartment that you had to find and furnish on your own. You are his only means of transportation. You have to do all the shopping, all the cooking, all the washing up. You are the one who does the laundry, pays the bills, and schedules all the caregivers. You can't even be alone to concentrate on your own needs because by the end of the day you are too exhausted to do anything but sleep and you can't even do that well because of all the stress you're under. You’re like a doctor, on call 24/7. You tell me you have had three meltdowns in the last seven days. Frankly, I'm surprised you haven't had more.”
These recaps turned out to be very helpful. As I mentioned earlier, my wheelchair allows me to stand up so that I can do a host of exercises that I couldn't do in a more conventional chair. For example, I can do a series of aerobic exercises that target my gastrocnemius, my quadriceps, my glutes, and my trapeziuses. That's the good news. The bad news is that I am a very bad wheelchair driver. I have a hard time visualizing how far behind me my chair extends. As a consequence, I bump into things, not a lot, but much more than I should. One evening I bumped into one thing too many, Nancy's desk in her room. I would go there every night so that we could watch television together, usually something from Netflix.
On this particular night Nancy had already been stressed out by working all day at the house we were putting up for sale. When I hit the desk, Nancy lost it. I had made the mistake of excusing my bad driving by pointing to two obstacles on the floor, a waste paper basket and a pile of dirty clothes.
“Does this make it any easier for you?” She threw the waste paper basket and the clothes across the room.
I didn't say anything, my usual practice. But when she apologized for losing her temper, I took a leaf from her psychiatrist's book.
“No need to apologize, sweetheart,” I said. “I'm amazed you don't lose your temper more often.”
Later Nancy confided in me that that was precisely the right thing to have said. (Thank you, Dr. Morgan.)
Nancy wasn't the only one who had meltdowns. My first happened two months after we moved into the new apartment. It was 7 January of the New Year. I was in the living room. Nancy was two rooms away re-arranging the storage closet. I had decided to do a round of exercises in my standing wheelchair. I started to raise myself up. In the process I failed to keep a watchful eye on the control screen. When my chair was fully upright, instead of switching to the rest position, I accidentally caused the chair to lean forward. The center of balance shifted. All 432 pounds of the chair, not including me, tipped as if it were bowing to the statue of Buddha we keep in the living room.
Before I knew what was happening, I was at a 45° angle to the ground. The plates that I rest my feet on struck the floor and thankfully stopped the chair from tipping further. My left hand caught onto a doorknob. I held on to it for dear life thinking that I could push myself upright. It was a useless thought. Together the chair and I weighed close to 650 pounds. I started screaming. Nancy heard me but, she told me, it was such an unearthly scream she assumed I was watching something on television. When she didn't come, I screamed even louder, a terrified cry driven by absolute fear that I would fall forward, sever my spinal cord and complete the injury.
This time, just like the time when I fell on the stairs in my home a year and a half earlier, Nancy came running, realized immediately what had happened and reversed the forward leaning command. Slowly the chair righted itself but not before, for the first time in my life, I had a taste of what it meant to be hysterical.
Getting used to a new apartment after living in a house for 20 years isn't the easiest thing to do, even if both parties are perfectly healthy. For me everything was logistics. How do I get out of bed in the morning? How do I go to the bathroom? How do I get washed? How do I get dressed? How do I find a life for myself outside of Nancy so that she doesn't have to be chained to the life that enchains me? Taken together these are called in the healthcare profession the ADLs, the “activities of daily living.” Medical dictionaries define them as “the things we normally do...such as feeding ourselves, bathing, dressing, grooming, work, homemaking, and leisure.” That doesn't leave room for much else. In fact, it comes down to one word, living.
The short answer to all those questions is simple: you can cope with living by finding a good home care provider. That doesn't help much, does it? Especially if you can’t afford one. That wasn't a problem for us. The blessed VA picked up the tab.
Once again we relied on a referral, this time from someone we trusted. She gave us the name of a small company run by a husband-and-wife team. I never met them, although I did chat occasionally with the wife. As far as I could tell, the firm had compiled a list of caregivers, presumably after careful interviews, and a list of clients. The primary business of the firm was scheduling to get the two together. There was no preliminary interviewing that involved us; no questionnaires to determine compatibility. It was a lot like a potluck supper. No wonder the social worker and case manager at the VA were always vague when we tried to pin them down. They didn't know what would happen the day we got home because no one knew.
Our first caregiver was a thin, good-looking boy. He was quite young, in his mid-20s. He made it clear from the outset that what really turned him on was music. He had taken classes at a local music school, a very good one, and he sang with a group. He played piano and was choirmaster at a church in a nearby suburb. He worked that gig on Sundays. I told him I played the trombone. We bonded over music. He and I had great fun together. We would sing songs in French, songs that he sang as a schoolchild. I remember one of them: Je vais en avion au Mozambique. He sang it to the tune of If you’re happy and you know it, clap your hands.
He would tell me about his girlfriend in Canada and show me the sweater she bought for him when he visited her on the weekend. When I asked him if the relationship was serious, he said he didn't know. He said it with a sly smile that I took to mean it wasn’t serious.
The problem was that he didn't want to be a caregiver. It was a way of making a buck until his music could sustain him. At some level I think he resented having to resort to this kind of work. His ambivalence showed up in little passive aggressive ways. He was almost always late. He would use the guest bathroom but not clean up after himself. He would carefully sort out the morning dishes and wash mine but leave Nancy's in the sink. I'm sure he rationalized this by thinking that he worked for me, not us. He knew where to find things in the kitchen, but somehow forgot where they went. He left them for Nancy to sort out. As far as folding laundry and putting it away was concerned, that was as foreign to him as wearing panty hose to choir practice.
These duties are part of the caregivers' job description. The idea is that a caregiver helps the spouse as well as the injured since, in one-way or another, both are injured. Nancy pitched in on these morning chores, but I was sensitive to the need to relieve her from them, especially in the early days of our living alone. She was already the reserve 24/7 caregiver. I wanted her to get all the help possible. A caregiver with issues was not going to provide that.
One day he asked Nancy if she minded if he took time out from his routine to call his sick grandmother in Africa. As a courtesy Nancy left the room. She returned to find him hanging up, not his own cell phone, but our landline. He had tried to make the call on our dime but it didn't go through. If it had, we wouldn't have said anything. It isn't that we are especially forgiving or generous. It is just that there is a kind of covert intimidation that can arise between a caregiver and a caretaker. I simply did not want confrontation with someone on whom I depended so intimately. So I swept a lot under the rug.
It all worked out in the end just as the social worker and case manager at the VA said it would. Our passive aggressive caregiver came less and less often and new caregivers took his place. Eventually he disappeared altogether. The way this change came about was not to deal with the problem head-on. Rather we damned with faint praise. One day someone from the agency called to ask how things were going. Nancy said that they were going well, but with a few lapses. The woman from the agency asked what they were. Nancy read from the list that she had prepared. It contained about 10 items.
“Over how long a period of time?” the woman from the agency asked.
“That was yesterday,” Nancy replied.
There was silence on the other end of the line. Shortly after that conversation a new caregiver showed up.
The situation with caregivers was odd. I would try to develop a friendly relationship, although this was against company policy. Caregivers were to be professional and somewhat distant. I made it very hard for them to be distant. I would insist, for example, that we play patty cake together before the caregiver left in the morning. I reasoned that it would be hard to keep one’s distance from a patty-cake partner.
One day a new caregiver—she had been in this country for 10 years—asked if we could talk. I was on the commode at the time. She sat across from me on the edge of the bathtub. It was an odd situation for a heart to heart. But then my situation was inherently odd.
She said she was feeling a bit down. She told me that in her home country elders were considered wise. She needed, she said, counsel. I asked her why she was feeling down. She told me she had just seen the credit card charges racked up by the father of her child. At the time of our talk she and her husband had been separated, I’m not sure for how long. The records came into her hands because she was dealing with child support issues. What had depressed her were purchases from Victoria’s Secrets and for a hotel room. The dates coincided with her time in the hospital giving birth to her son. It was, of course, a time when she thought they were still a couple. The credit card record had brought back all her feelings of abandonment and abuse.
She went on to tell me that she was living in a state subsidized motel with her two-year-old son. In other words, she was homeless. She said that she came to the United States to escape from her father, who had sexually abused her on a daily basis. It was a common occurrence, she added, in her native country. She told me she was going to change her name because she didn't want to bear his any longer. She added that her father was a wealthy man.
She was with me for just two weeks. At the end of the second week, it was a Friday, she told me goodbye and that she would see me on Monday. She was very cheerful. Earlier in the week, she told me she had an appointment with a psychiatrist, thanks to her social worker. That Saturday I got a call from the agency. She had called in her resignation. She said she’d found another job.
I could believe that. She was going to school to be a medical translator. She spoke two languages besides English. Her school had recommended her, so she told me, for a job. She went for an interview. She got the job. If all of this is true, more power to her. The job paid better and came with benefits. But the kicker is “if all of this is true.” I'll never know. I hope the part about the job was true. She was a bright and deeply unhappy person. She deserved a break.
So many of my caregivers were like this. Their stories were unhappy ones. Usually, they were women. Typically, they were single mothers and struggled with schedules for themselves and their children. If they were not single, they were often in an abusive situation. These were people at the bottom of the wage ladder. And yet, they couldn’t be more attentive to me. They were people who needed to be taken care of and here they were, taking care of others. Our society gives rise to so many unsung heroines.
Typically, they were with me for a while. We would establish a kind of friendship. And then one day they were gone. I wonder what it must have been like for them. I imagine that they must protect themselves against attachments. It's an odd profession. Not a single one of the ten or so caregivers I had was a WASP (white, Anglo-Saxon Protestant—or Catholic, or Jew, for that matter). They were all Afro-Americans or Brazilians, or Haitians or Africans. The majority was female. I only had two males. The men played their cards close to their vests. The women were open-hearted.
One of the benefits of my accident was to introduce me to people that I would otherwise have never met; the veterans in the hospital and the people who take care of them at first light or last, the caregivers who came to our home. I don't know if this experience has made me a better person. It has certainly made me a more empathetic one. There has to be an easier way to come by empathy.
As the days wore on, many of the details of living became routine. That was the buzzword. We were encouraged to routinize as much as possible. Spontaneity was only for the healthy. In the morning and in the evening we relied heavily on caregivers whose first question was inevitably what is the routine? If there wasn't one, we made one up. I think the idea was that once a routine was in place one could improve on it. Without a routine there was nothing to improve upon.
As I indicated more than once, an ADL (activity of daily living) sorely in need of a workable routine had to do with excretion. Worry about that most basic (and touchy) of all bodily functions surely goes back to the first time a humanoid suffered from an enlarged prostate or a urinary tract infection. It is something to worry about. When everything is going well, we take elimination for granted. But let something get in the way of normalcy and life becomes a nightmare. This was surely known to the author of a Jewish prayer that goes back to the fourth century before Christ. I wouldn't be surprised if Jesus himself gave voice to it. Today observant Jews say “the bathroom blessing” every time they successfully negotiate the toilet. They step outside, wash their hands—once will do, though some opt for three—and say these words:
Blessed are You, Hashem, our G-d, King of the universe, Who formed man with wisdom and created within him many openings and many hollows (cavities). It is obvious and known before Your Throne of Glory that if but one of them were to be ruptured or if one of them were to be blocked it would be impossible to survive and to stand before You (even for a short period of time). Blessed are You, Hashem, Who heals all flesh and acts wondrously.
Now this is a solid, practical, both-feet-on-the ground-spread-slightly-apart kind of prayer. Compare it to the Lord’s Prayer, which I take to be a general purpose all-occasion type of prayer. Not so the bathroom blessing. Consider that line referring to one of those God-given holes “…if one of them were to be blocked it would be impossible to survive and to stand before You (even for a short period of time).” He has got that right, as anyone whose prostate has grown to the size of a small grapefruit (mine did) and shut down the urethra like a bowling ball on a garden hose (mine was). When that happens, you’re not going to be standing before anyone “even for a short period of time.” This prayer writer knew whereof he spoke. In fact, every time I read that prayer, which isn’t all that often, I feel sorry for the poor bastard.
In one of our many, many conversations about condom catheter failure Dr. Lerner pointed out an obvious fact that we had overlooked. Urination has two sides, a medical and a social. As far as the medical side is concerned, I was golden. My bladder was working, even if it wasn’t able to pump out its contents completely. At least I could tell when I had to pump. So, she said, your problem is a social one. How do you get rid of its contents in a socially acceptable way? That doesn't call for a supra pubic tube, a device that taps into the bladder the way a spigot taps into a maple tree for the sap. It calls for a new routine.
Nancy and I decided to do something radical: no more condom catheters during the day. I’d take my chances when I wore one at night. Without the condom catheter a caregiver had to help me void, or, when a caregiver wasn't here—which was most of the time—it was up to Nancy. This is how it went. Whenever I felt the urge, I would stand up in my wheelchair and she would hold a urinal in place. The problem with that, of course, was that Nancy was now a prisoner of my bladder. That was an impossible situation. It meant that even if she went out, she would always be on tender hooks about having to return to help me. We tried to pace the intake times and the amount of fluid to avoid dehydration so that we could predict with some accuracy when the pump would be primed again.
It wasn’t an exact science, but at least it solved some of the problem. Nancy and I felt free to make reservations for dinner at a restaurant. She would bring along a discreet black bag that contained sanitary rubber gloves, tissues and a urinal. Thanks to that care package I have seen the inside of more women's restrooms than anyone except cleaning crews.
Restaurant owners were more than glad to help, stationing someone outside the bathroom while Nancy and I used the double sized stall. That solved one social problem. But what about voiding at home? Maybe that routine could be improved upon.
Necessity is the mother of invention. I learned how to void on my own. I found that with the use of a mirror and a handheld urinal I could, with practice, manage it while sitting in my wheelchair. Standing up was still beyond my reach, literally.
First, I had to solve the safety belt problem. It was mandatory that I wear one whenever I was in the wheelchair. I had to get it out of the way in order to do my mirror trick. I couldn't let the two ends of the belt slip down to each side of the chair. My arms were not limber enough to retrieve them. But I couldn't leave the belts hanging. The belt could easily get caught up in the wheels and be torn off, a minor glitch suddenly turned major. We would have to find a repairman with the appropriate belt in stock. Then we would have to make an appointment for him to come to us since we couldn't go to him. It could take a week or longer. In this fashion little things could grow into big things very quickly if you weren't careful. Life in the apartment had become a game of chess.
To deal with the safety belt problem I made use of a short bungee cord. I hooked each end of the cord to either end of the safety belt. I stretched the bungee cord across my knees so that the tension kept the belt from falling to the floor. It was a reliable technique. It also freed both hands. This was an enormous advance. Now I could expose myself to myself in the mirror and use the image to position the urinal. It worked 90% of the time, a vast improvement. Now Nancy could leave the apartment anytime she wanted to without worrying about me. It was an important improvement. And it all hinged on a bungee cord.
Then one day Nancy had a breakthrough. She'd been looking through the Internet for different kinds of urinals. Perhaps there was one suited to me. What she saw gave her an idea. She went to an auto parts store and bought an oil funnel for $1.48. She attached a foot and a half of transparent plastic tubing from one of my leg bags to the narrow end of the funnel. She took a small plastic traveler’s bottle about three inches high, filled it with water and taped it to the bottom of the plastic tube to give the tube heft. This device whose parts were less than three dollars changed our lives. With it I could stand up over the commode while holding onto my wheelchair and direct the flow into the bowl. It was 99.9% successful, so successful, in fact that it deserved a name. A VA prosthetics technician, Jeff, to whom I showed it suggested, Nan’s-Ease (pronounced Nanzees). Clever guy.
From this point on we could go to the movies and I could excuse myself in the middle without having to ask Nancy to come with me. I could do the same at home. VD (i.e. voiding disaster) was a thing of the past. It was an incredible breakthrough. At $2.48 it was the best investment of our lives. So long as I could move my wheelchair close enough to a commode I was, with my elephantine funnel, golden. If the time ever came when I could actually walk, it would be that much better.
Another problem that loomed larger at home than at the hospital had to do with infections. At the hospital a doctor was available at all hours. Not so at home. One morning my caregiver in the course of giving me a bed bath exclaimed, “Oh, my!”
“What's wrong?” I exclaimed. My hair-trigger anxiety going off.
“It's your testicle,” she answered with worry in her voice. “I'd better call Nancy.”
I dreaded that note of concern. I lived every day anticipating it. When I heard it, I felt as if I had swallowed an ice cube. The problem was my left testicle. It looked like a jumbo size chicken egg. Some people live charmed lives. I live a semi-charmed life. As it happened, my pre-VA urologist lived in an apartment two floors above mine. I phoned. He made a house call 10 minutes later.
“You have epididymo-orchitis,” he said after a quick examination. “The left testicle is swollen because the epididymis is infected. The right one is inflamed.”
It happens. Bacteria are constantly banging at the doors of our bodies. Unbeknownst to us until it's too late, we sometimes let them in. My old urologist prescribed an antibiotic. Nancy picked it up at a nearby pharmacy. I was being treated within two hours of swallowing an ice cube. I telephoned my primary care provider at the VA. She arranged for laboratory tests to see what exactly was swarming in my testicles. It was, not surprisingly, E. coli. All turned out well. My neighbor had guessed right on the antibiotic. Things were back to normal in about two weeks and I wrote the following jingle to celebrate:
On the left and on the right-is
All the day and all the night-is
I recited this to the urology staff at the VA hospital whenever I had to go in for an appointment, occasionally to their amusement.
In the course of an interview she gave to a VA researcher, Nancy heard what I had heard on the grapevine and what matched my own experience: the primary concern of those who have suffered a spinal cord injury is not walking again or even sex. It is bowel and bladder control. Most of my upsets at home involved one or the other. It is amazing how something that we hardly ever think of when it’s working properly can make our lives a hell when it is not.
Consider the testicles. For a male who spends a lot of time in a wheelchair, the best place for them is definitely not between the legs. After a while that becomes extremely uncomfortable. Even if I start off the day comfortably, mine tend to slip into ill-fitting crevasses. Nancy and I discussed this problem with the VA nurse. It turns out I was not alone. It was a familiar problem. She suggested a method that worked for others, a 3-inch wide cloth strip about 2-feet long. She said that cutting one out of a pair of underwear had worked well. We followed her advice.
Every morning my caregiver would position the sling beneath my testicles where they lay cradled like two soft-boiled eggs in a loose-fitting hammock. The sling was tucked into the creases of my groin. Whenever the testicles called attention to themselves, I could reposition them by grabbing hold of the ends and pulling.
To take the edge off my disability, I tried to make a game of everything. Every morning my caregiver would bathe me in bed. Typically, we would begin with me washing my face. When I finished, I would roll the washcloth up in a ball, position my caregiver across the room and toss it. Gradually I got to where I could throw a belt high strike three out of four times.
When it was time to put on my “hammock,” we would recite this jingle:
Good morning, Mr. Sling-o.
Time to do your thing-o.
When you do, I'll sing-o,
Bingo! Mr. Sling-o.
We alternated lines. She would go first.
Mornings weren't always fun filled. Hematuria is the medical term for blood in the urine. It is very upsetting when it happens. It's not just that it's startling. You see red where you shouldn’t. It can be symptomatic of cancer of the bladder. Apparently the medical profession didn’t always recognize that.
About 18 years ago a friend of mine, Carl Lee Baker, a colleague in linguistics exhibited frequent hematuria. At the time, its association with bladder cancer was not fixed in the urological canon. The symptom was back-burnered. By the time my friend was hospitalized it was too late. There was nothing to be done but make him comfortable.
The way he spent the last six months of his life was remarkable. Trained as a scholar and known as a superb one, he read all the introductory textbooks in urology. He discovered that the linking of bladder cancer and hematuria had not been made enough of. So he mastered the style of medical publication and wrote an article redressing the balance. He died, but his article was published in an important medical journal. Who knows how many lives he saved because of it.
The way Lee faced death taught me an important lesson. When it looks as if there's no way out for you, work. (This book is a product of that lesson.) He also taught me to be scared to death of hematuria. So one morning when my caregiver came in and saw that the bed bag that I used to collect urine overnight was the color of Coca-Cola, she let out a muffled cry. She had never seen that before.
I don't take bad news very well. It's hard for me to say to myself, “Don't worry until you have something real to worry about.” So I worried like hell. My doctor immediately scheduled a cystoscopy with my VA urologist. This is a procedure that inevitably makes my male friends grimace when I describe it. A fiber-optic scope is inserted into the penis. It passes down the urethra, through the prostate and into the bladder where it looks for lesions, anything that might cause bleeding. It sounds gruesome. In fact, in the hands of Dr. Lerner, it was one of the most interesting experiences of my post-SCI life.
I was wheeled into a tiny room filled with all kinds of arcane equipment. I lay on my back. A pump was inserted into me. It would come in handy if excess liquid obstructed the view. Everyone present wore long aprons for protection in case the pressure in my bladder expelled the instrument—a not uncommon occurrence—and sprayed everyone with urine. The aprons made them look like shop attendants.
Dr. Lerner inserted the cystoscope.
“Would you like to see what I'm seeing?” she asked.
I nodded enthusiastically. She projected an image onto a monitor above my head. I could see my urethra gliding by as she gently pushed the instrument toward my bladder. My first thought was, “This is the route my sperm took to help make my children.” I didn't have a chance to mull that over. Coming up straight ahead was a dark spot that looked like the entrance to a mine.
“When did you have your TURP?” she asked. “That's the hole it left behind.”
Sure enough, there was a hole that used to be filled by my overgrown prostate. I had had a transurethral resection of the prostate (TURP) 20 years earlier. A normal prostate weighs about 15 grams. Mine was 150 grams, a little larger than a medium sized orange. It sat on top of my urethra like a sumo wrestler on a fire hose. It never occurred to me that after it was reduced in size it would leave a hole. I thought the principle that nature abhors a vacuum applied inside the body, too, and that all the surrounding organs would fill up the empty space. Not so. There it was in black and white, a hole inside my body.
While I marveled at that empty space, Dr. Lerner was passing over the remains of my prostate. It was a bulbous object covered by a rete of blood vessels. It looked the way I imagined WC Fields' nose looked; that is, like the main roads on a roadmap. The sight was instantaneously comforting. It offered a benign explanation for the hematuria.
At last Dr. Lerner entered my bladder. For a short while I was a member of the medical crew in Fantastic Voyage, the 1966 film where the crew members are shrunk to 1 millionth of a meter in order to enter a colleague’s body and destroy a lethal blood clot. If anything nefarious was going on, the bladder is where it would happen.
Dr. Lerner ran the cystoscope over the bladder walls. She was like an archaeologist exploring a tomb with a flashlight. I was enthralled. The walls looked murky at first. Dr. Lerner asked the assistant—her name is Becky—to operate the pump. Becky flipped a switch. The bladder emptied. Suddenly, everything came into sharp focus. The walls of the bladder appeared tufted, like a white satin duvet. Best of all they were spotless, not a lesion to be seen. Here was an 80-year-old bladder that looked good as new.
Warming to the task, Dr. Lerner took on the role of tour guide.
“That's the ureter to your left kidney,” she said when a tunnel came into view.
The image on the screen spun around in a dizzying fashion and came to rest on another tunnel just like the first one.
“That's the ureter to your right kidney,” she said.
I could see a tunnel twisting gracefully up and out of sight. The next thing I knew my innards receded at warp speed. The cystoscope came out. The screen went blank.
“Everything looks great,” Dr. Lerner said.
“That was absolutely amazing,” I said. “What a wonderful experience.”
Dr. Lerner smiled.
Becky said, “You’re weird.”
I suppose I am.
The Merriam-Webster dictionary defines johnny as “a short-sleeved collarless gown with an opening in the back for wear by persons (as hospital patients) undergoing medical examination or treatment.” When we left the VA hospital on 3 November, the nurses gave Nancy a couple for home use, at least until we got settled. For the next 10 months I slept in a johnny every night. I didn't give it a second thought until I mentioned it in passing to my physical therapist at the VA. She looked mildly shocked. It only took me a few seconds to realize why. Even though I'd been out of the hospital for 10 months, at night I still dressed like an inpatient because at some unconscious level I still felt like one.
Perhaps it was because my room in the new apartment looked uncomfortably like my old room at the VA. I needed a hospital bed with its distinctive railings. I needed a table beside it. I needed an overhead hoist. It was hard not to think hospital when I entered my room. Perhaps I wore that johnny as a mark of medical servitude.
Maybe. But wearing that johnny for so long was also symptomatic of something else, something much less harmless. I was marking myself as a patient just as surely as a badge marks a policeman. I was telling myself that it was okay for other people to take care of me so that I wouldn't have to take care of myself. That was a subtle habit of mind. At least a part of me was seeking solace in victimhood. Despite all my conscious protestations of wanting to be as independent as possible, there was still a part of me that didn't want that. I always thought that I was really two people. One was an unconscious one that had its own agenda, like wanting to be taken care of. The other was a conscious one that wanted to do what was right. I think I spent a good deal of my life fighting the hidden agenda. I won this fight. I stopped wearing the johnny.
A major concern with sleeping at home is bedsores. An SCI body doesn't move like a normal body when it's asleep. No nighttime restlessness combats dangerous pressure points that arise in places like elbows, hips and coccyges where there isn't much fat to protect the skin from pressing up against the bone and shutting off the blood supply. The squeezed area begins to die from lack of nutrients. The tissue necrotizes. Once the sores get a foothold they are extremely hard to treat. In the worst cases they can dig down to the bone and kill you. In every rehabilitation hospital I have been in you can find posted on the walls pictures of bedsores doing their worst. These are meant to scare the hell out of potential targets. They worked on me.
At the VA hospital nurses turned me every two hours at night. That's how much they were concerned about bedsores. A month before I was scheduled to leave for my new home, I began to worry. Nancy can't wake-up every two hours to turn me. That would be cruel and inhuman punishment for a crime she didn't commit. Paying someone to stay in the same room with me was always possible, but I couldn't see it. Nothing said dependency so much as sleeping with a stranger in the room every night.
One night a solution began to take shape. There is a device called a hovermat. It is an oblong plastic bag that looks like a garment bag. It matches the shape of the mattress on the hospital bed that I was given. The hovermat lies flat under the bottom sheet. The patient lies on top of the bottom sheet. A hose from an air pump fits into a hole in the hovermat. If you turn on the pump, the hovermat fills up with air and lifts the patient up. This makes it a trivial matter for a nurse to re-position the patient regardless of how heavy he might be. It’s like sliding a body around an ice rink.
For some reason, most nurses at the VA didn't use the hovermat. Maybe it was because the pump made a terrible racket. Whatever the reason most of the time the hovermat lay deflated and the pump silent. One night I was thinking what a waste this bit of machinery was. Maybe there was another use for it. That’s when it occurred to me that I might be able to use the device to turn myself in bed. If I lay on one side or the other of an imaginary line down the center of the bed, then whenever the hovermat inflated, it would tip me in that direction.
So this was how I would turn myself every night. I would go to sleep with a pillow tucked underneath me so that I wasn't lying flat on the bed. I would set the timer on my iPhone for three hours. (Dr. Jayawardena agreed to let me start with a three-hour interval.) When the timer woke me, I pulled the pillow out from under me and lay flat. I reset the timer for three hours and went back to sleep. When it woke me again, I pulled the pillow across my chest. Then I moved just over the midline in the direction away from the pillow. I turned on the air pump. The hovermat raised me up to a 45º angle. I stuffed the pillow under me. I set the timer for two hours. I went back to sleep.
Because the air pump was at the opposite end of the bed and because I couldn’t possibly turn it on manually, I needed a Wi-Fi activated wall socket to make this Rube Goldberg work. I would plug the Wi-Fi socket into a normal wall socket. Then I would plug the pump into the Wi-Fi socket. A remote controller would turn the Wi-Fi socket on and off. Whenever I wanted to turn myself, I clicked the on button on the remote. Whenever I was turned far enough, I clicked the off button. Voila! A hand held control for a wall socket not only in my bedroom, but anywhere in the apartment. One of my nurses told me where I could buy a package of five Wi-Fi activated wall sockets and one remote controller for $30. Instead of paying roughly $10,000 a year, I paid $30, and could control all the lights in my bedroom as well.
The nurses were skeptical that it would work. So were the occupational therapists. When I came back to the hospital as an outpatient and told them of my success, they weren't nearly as impressed as I thought they should be. I had expected the occupational therapists’ equivalent of the Nobel Prize. Instead, I got a pleasant “That's nice.”
Sometime later, I met a patient in the gym who had gone home only to return as an inpatient.
“What happened,” I asked.
“I got bedsores,” he said mournfully. “They’re taking a long time to heal.”
“I think I can help,” I said.
I explained to him my Rube Goldberg contraption.
He shook his head and said, “Sounds too techie to me.”
Several months after using the Rube Goldberg re-positioner, I got to the point where I was strong enough to turn myself. Dr. Jayawardena agreed to let me sleep in four-hour shifts. I promised to check carefully every morning and return to shorter shifts if my back showed any signs of developing bedsores. It never did. My device is a thing of the past. But it helped me make the transition from hospital to home and from johnny to pajamas.
The Book of Job is a tale of the so-called “just sufferer,” someone who has lived a perfectly pious and devout life who, nonetheless, suffers, as in Job's case, the loss of family, property, well-being, the whole nine yards. A pawn in God's game of chess with Satan, Job is smitten with boils, emerods, scurvy, the Egyptian botch, you name it, all because he did everything right. He is the poster child for “No act of kindness ever goes unpunished.”
The tale raises the question neatly captured in Rabbi Harold S. Kushner's famously successful book When Bad Things Happen to Good People, a meditation occasioned by the birth of his son with a rare genetic disease called progeria, rapid aging. His son died at the age of 14, a short life, but long enough for the Kushners to experience the special hell that comes with the death of a child. What could Aaron possibly have done to deserve a death sentence handed down before he was even born?
These are tough questions for monotheists. Not so for crypto-polytheists like the author of Job who allows for both good and evil gods.
These things never really bothered me. I never asked the question “Why me?” It seemed that I could just as easily have asked the question “Why not me?” I never thought of myself as immune from physical disability. I never thought of illness as a punishment or wellness as a reward. For me, bad things happen, period. Often in the mornings, before my accident, I would look into the bathroom mirror and wonder what trouble was brewing under that skin. That Saturday morning fall enlightened me.
What does bother me, however, is why bad things seem to keep on coming. The first two weeks in the apartment were, as I said, fraught with stress because of techniques as yet unmastered, like how to get me in and out of bed and how to void during the day. As if that wasn't enough, the week before Thanksgiving, just three weeks after I moved in, the tip of Nancy's left index finger began to ache. It was not an ordinary hurt. Sunday morning, she felt as if her finger were about to explode.
She went to the MIT infirmary a few blocks away. A doctor on duty lanced the fingertip, extracted what he thought might be shards of glass but said he wasn't sure that was the root cause.
Monday morning, she returned to the infirmary. She was told she needed to go to the emergency room. An excellent surgeon who had operated on my left hand (a broken third metacarpal) a month before my accident had an office at Mount Auburn. She chose it. A nurse in the emergency room lanced her finger again. It drained, but there was no relief. She said Nancy had better see the hand surgeon as soon as possible. The next morning Nancy went straight to his office. She hadn’t made an appointment. She told the secretary she would wait. That took 15 minutes. He took one look at her finger and scheduled an operation later that morning. Her finger was invaded again, this time in an operating room with the doctor and five attendants.
The doctor had given Nancy a choice between a general anesthetic and a nerve block. She chose the nerve block. That's why she was alert during the entire procedure.
During the prep period a nurse with a clipboard asked the doctor, “Why are you operating on the finger?”
Her job was to collect information for hospital records.
“That's where the problem is,” he answered.
“Can you be more specific?” she pressed.
“It's infected,” he said.
“Can you be more specific?” she insisted.
“It's very infected, “he answered.
By this time everyone was in stitches, everyone, that is, except Nancy.
The doctor asked for a blunt needle.
“Blunt?” Nancy interjected. “That is not what you want to hear your surgeon ask for. Maybe I should have gone under.”
“Maybe we all should have,” replied the doctor.
The operation was a success. The infection was cleaned out. The doctor wanted to see her first thing the next day.
The next morning, she was about to leave for his office when suddenly the fire alarm went off in our apartment. A voice came over the built-in emergency loudspeaker system.
“All residents are requested to leave the building following the standard evacuation plan. Disabled residents are instructed to follow the disabled evacuation plan.”
“What disabled plan?” I blurted.
The elevators were no longer in operation.
“I'll run down to the lobby to find out,” Nancy exclaimed. “I'll call you.”
Once there she discovered that workman in the building had accidentally set off the alarm. She was already late for her appointment. Her finger continued to throb. It seemed worse than before the operation. The concierge was on the telephone dealing with distraught residents. Nancy had left her cell phone in the apartment. She decided not to run back up the 11 flights of stairs, but to go on to the doctor's office and phone me from there.
Nancy had not left me alone. My morning caregiver was with me. When the alarm sounded, she promised to stay. I couldn’t see that happening. If smoke started creeping in under the door, I was going to tell her to save herself. I sat there, immobile in my wheelchair, trying not to let myself think about what it would be like to die inhaling smoke, or worse still, fire.
Suddenly there was a knock at the door. It was the woman who lived next door to us, a retired nurse. She was wearing a gown over her nightdress. She told us not to worry, that the alarm was always going off, and there was nothing to worry about. By then I was exhausted.
For the next two weeks Nancy suffered with a finger that wasn't getting better. Finally, it was diagnosed as a staphylococcus infection, a so-called MRSA; that is, an infection resistant to antibiotic treatment. It's the kind of infection that when you tell someone you have it, they say “Uh, oh” and step back. The Center for Disease Control recommended ciprofloxacin for her particular infection. If anything was going to be effective, it would. It worked, although it took two separate regimens to kill the damn thing.
We had no idea how she got it or where she got it. But with no regular caregiver and with Nancy in excruciating pain left alone with me in the apartment, I saw myself as a poor relation of Job.
Two weeks after Nancy's MRSA was under control, I got mine. Nancy didn't give it to me. It doesn't work that way. In fact, it would have been more likely that I gave it to her except that it doesn't work that way either. A major cause of a MRSA infection is a long stay in a hospital. Since I was an inpatient for seven months in one hospital or another and since Nancy visited me so often she might as well have been, that's probably where we both got it. Mine showed up on the lower left side of my body. I never really saw it, but from the looks that Nancy and my caregiver took on when they examined me, I'm glad I didn't.
When it was discovered, we rushed immediately to the emergency room of the VA hospital. The doctor took one look at it, guessed it was a MRSA and lanced it with a No. 11 scalpel. He sent a sample to the laboratory and two days later his diagnosis was confirmed. I went on antibiotics. The large MRSA quickly disappeared and a month later in the same region another one appeared. The same treatment did away with it but the doctors told me that my microbiome was probably colonized. I didn't know I had one, let alone that it could be colonized.
A microbiome is the name of the genetic material (the genomes) that makes up the collection of microorganisms that live in and on our bodies. Who knew? I asked the doctor if it was possible to alter one's microbiome. He said I could give it a try. The technique was to rub hexachlorophene all over my body every morning for seven days and let it sit there for several minutes before washing it off. That's what I, or rather my caregivers, did. It worked. No more MRSA's. I felt like a new microbiome.
After my microbiome makeover I went a couple of weeks without incident. Then one morning I woke up with my right leg half again as large as my left. It was a DVT. That stands for deep venous thrombosis, a blood clot. An ultrasound examination uncovered it the afternoon of the day I discovered it. I was immediately put on Coumadin, a drug designed to prevent future clots. My body, I was told, would deal with the clot that had formed. And it did. I had to stay on the Coumadin for six months. A call to Dr. Jayawardena at 8 AM led to a diagnosis and treatment by 3 PM the same day.
My brush with DVT had an unexpected consequence. I had to regulate the amount of leafy greens I ate; lettuce, kale, spinach, Swiss chard. I was drinking cranberry juice to help create an environment in my bladder hostile to E. coli. I had two glasses of wine every night. I had to stop all of these. The reason was vitamin K. It helps to coagulate the blood. Coumadin thins the blood. The two are at cross-purposes. There was a certain balance that I had to maintain between the two and this meant going to the blood lab every two weeks to give a blood sample used to make sure I was in balance.
And so it went. This litany of distress was surely a combination of my injury and my age. The historian Arnold Toynbee once remarked that history was just one damn thing after another. Well, that's what life was like for me after the accident, one damn thing after another.
Job and I never saw it coming.
For the next four months my therapy consisted of the occasional walk on the Locomat, sitting and standing by the parallel bars and preparation for coping with bed when I left the hospital. The latter amounted to airlifting me to the mat with the adjustable height feature. I would then lie down and practice rolling over, first on one side, then on the other. Rolling left to right was easy. Rolling right to left was something else.
One day roughly one year and seven months after my accident—by then I’d been living at home for two weeks and going to the hospital as an outpatient—my therapists upped the ante. The date was November 14, 2015. I was at the parallel bars. After going from a sitting to a standing position three times, Jess and Barbara told me to move my chair up to the front of the bars. Barbara had attached a contraption that slid along the top of the bars. On each side a handle poked up like the horns on a Texas steer.
I was already tired from the three warm-ups I had just done. But there was no way I was going to beg off. Something important was about to happen and I wanted to be there when it did. So, as always, I did what I was told.
“Grab hold of the handles and stand up,” Barbara commanded.
My muscles were always tight from lack of exercise. They needed constant stretching and that was something I couldn't do on my own. I felt the pain in my shoulder joints as I arched back to put my hands on the armrests. When I reached them, I pushed off. Halfway up gravity started to fight me. I leaned over my toes and pressed my heels into the floor the way I had been told. Gradually my body unbent. I made a desperate grab with my left hand for the horn closest to me. I snagged it. I grabbed the other one with my right. I lurched upright. Now I was standing, looking down the rails like a kid between train tracks.
Jess was behind me holding onto the control that would hoist me up in case I fell. Barbara was in front holding onto the safety belt around my middle, also just in case.
“Now I want you to take a step forward,” said Barbara.
So this was what it was all about. It was not unusual for Jess and Barbara not to tell me what was going to happen next. They did this deliberately. They knew that if they told me what they were going for at the next session, I would spend the time in between stewing about it, wondering if I could do it. Their strategy worked.
With my right leg I took one rubbery, tentative, trembling step forward.
“Now bring up your left foot.”
I did as I was told.
“Now step back and sit down.”
“That was one small step for Jay,” I shouted as I sank back into my wheelchair. “One giant step for Barbara and Jess.”
I had done as I was told. I looked at Barbara in disbelief. There were tears in our eyes.
Jess said, “Awesome.”
That was her version of tears.
It was awesome. It was the first step I had taken in 4,848 hours, in 290,880 minutes, in 17,452,800 seconds, in 202 days, in 6 months and 19 days.
It was also the first time that I began to let myself believe, if only a little bit, that I might indeed walk again.
In the progress notes for that day Jess wrote:
Patient self-report: “I just took my first step!”
Three days later the progress notes for my next session read:
Patient self-report: “Do you think I am making too much of a big deal about taking steps the other day?”
Six days later the progress notes indicate that I said:
Patient self-report: “How do you think I did today?”
These comments are a perfect barometer of the mental roller coaster I was riding. I would break through to another level and then feel elation for maybe a minute. Then, all the things that lay ahead of me came crashing into my consciousness. Okay, I can take one step. What about more than one? And how long will I be able to walk before I have to sit down and rest? And how will I do that? Will I always have to use a walker? Suppose I fall down. Will that complete my incomplete injury? Depression quickly followed elation. Then the long slog up the hill to the next milestone began. I realized that there might not be an end to whatever journey I was on. I was climbing a mountain that had no summit.
Six days after the historic first step I was able to take eight steps on the parallel bars. Six days after that it was 15 steps. Six days after that, 25 steps. All of these 'walks' were done between parallel bars with a wheelchair close behind me and with an overhead hoist attached to a harness. I was like a dog on a leash. But I was walking.
The week after I took my first step at the parallel bars, I was able to hold one bar in each hand and shuffle forward in a good imitation of Frankenstein. There was always a harness attached to an overhead lift so that if I fell, I wouldn't. This was called a “tethered” walk. During these maneuvers Jess was behind me, Barbara in front. A third person would wheel a non-electric chair close behind in case I faltered.
In her notes written three days before Christmas 2014, five weeks after I’d taken my first step, Barbara described how far I'd come in the flattest of prose:
Response to Treatment/Progress toward goals: Pt (patient) tolerated rx (exercise) session well on this date with less fatigue. Pt demonstrated improved ability to perform sit-stand (pull to stand) from outside of // bars this day. Pt continues to have moderate difficulty with sit-stand with adaptive platform for // bars for gait training trials. Pt able to complete 77 steps this day (combined forward and backward). Pt is making progress in relation to functional goals at this time.
In other words, when I was outside the parallel bars I could pull myself up to a standing position. But when I was getting ready to walk the plank; that is, to walk between the parallel bars, righting myself by grabbing hold of the “adaptive platform” was still a problem. The cautionary note that it sounds—Pt continues to have moderate difficulty with sit-stand with adaptive platform—hides a multitude of sins.
I once asked Jess when it first occurred to her that I might actually be able to walk.
“Was it on November 14, the day I took my first step at the parallel bars?” I asked, expecting her to say yes.
“There wasn't any single event,” she replied. “But I thought it might actually be possible when you showed us that you could stand up.”
“Did you think I might not be able to do that?” I asked.
“It took you a long time. You had so much trouble I had my doubts that you would ever master it well enough to walk.”
In other words, it didn't matter that once I was standing I could walk if I couldn't reliably stand up in the first place. It was to Jess's great credit that she never shared her doubts with me, unlike the doctor who said I would never walk again.
There was something else. The underlying principle guiding physical therapy at the VA is to help the patient as long as the patient can be helped. A question that appears in the formal notes of the therapists at the end of each month reflects this:
Client [ ] is / [ ] is not able to benefit from skilled physical therapy program to increase functional activity/independence.
One or the other of those boxes had to be checked. After all, you don't want to be wasting precious time and energy on patients who have gone as far as they can go. That's why I was always nervous about my therapy sessions. I felt as if I were living under the Sword of Damocles. I had to keep Jess and Barbara away from checking the “is not” box. I seemed to be managing that well enough. In her report dated January 12, 2015 Barbara wrote,
Pt is making slow steady progress in relation to functional goals at this time.
That's where I wanted to be for as long as possible. January, February and most of March 2015 were months spent with me pumping my legs on the FES bicycle, or walking on the Locomat, or doing my best to improve my goddamn sit-to-stand success rate.
On March 24, 2015—it was a Tuesday—Jess took me by surprise once again. As was their usual practice neither Barbara nor Jess told me what they were planning for our next session to keep me from stewing about it. They had good reason to play their therapeutic cards close to their vests where I was concerned.
So on March 24, 2015 when they wrapped a harness around me tethered to the ceiling track, handed me a walker and told me to walk, I didn't have time to be frightened. I walked. The first time it was 25 steps. The second time 50 steps. The third time 100 steps. This went on for three months, each time doing a little bit more but always tethered to the overhead track and with Jess or Barbara walking beside me with one hand holding onto the harness just in case.
Then one day, it was the last day of June 2015, when I went into the gym for my usual therapy, Jess told me to park my wheelchair next to the mat by the door. She said she wanted to practice transfers from my chair to the mat and back. She handed me my walker. Then she walked around to the other side of the mat. She told me to follow her because we were going to do the transfers on that side.
I put both hands on the armrests. I leaned forward bowing in the “nose over toes” position. I pushed my heels into the floor and slowly rose to a standing position. I transferred my hands from the armrests to the walker. I began to walk slowly forward following the perimeter of the mat. I was three quarters of the way around to where Jess was waiting for me when I suddenly realized I was untethered. No strap connected me to the overhead track. No safety harness around my chest. For a brief instant I felt like Wile E. Coyote in a Road Runner cartoon, one where he runs over a cliff and remains suspended in midair until he realizes where he is and then plunges 1000 feet to the desert floor below.
“I'm not tethered,” I said, looking startled.
Jess was smiling. “I know.”