BIG WORD FOR FEELING AWFUL

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[Whatever the headline may suggest, this post is not about last Tuesday’s election.  My feelings about that are indeed awful, as if someone had suddenly and unexpectedly died, except it’s not the heartrending death of a someone but of political, ethical and perhaps even personal life as I and everyone I know has come to expect it. However, everything that can be said at this point has already been said, by other bloggers, columnists, friends.  As for the frighteningly uncertain future, we can only grit our teeth and wait for whatever comes next. So I am returning here to last May, after Bill’s death and my visit to the undertaker.]

Bill died on a Friday. On Saturday morning, of necessity, I visited the undertaker/funeral director. I then got myself home and didn’t go out until Monday.  There were comforting phone calls, which made me sad when they ended because I was alone in the house again. There was also cuddling with the cats and raw sorrow.  It felt as if a large part of me had been cut away, leaving a hollowed-out bleeding cavity. Solicitous acquaintances sent flowers.  I had no desire to eat (although I knew I should), and wished I could sleep (but couldn’t).  The refrigerator was still full of Orgain, a packaged drink somewhat like Ensure but designed by a doctor undergoing treatment for cancer and allegedly composed of more nutritious ingredients, which Bill had been able to consume even when the medication he was taking to slow the progression of his pulmonary fibrosis removed his appetite and made him nauseous.  I survived the first weekend on two or three daily vanilla Orgains.

I did go to bed early and lay there until it was light again, but if I slept (and I probably did, in fitful bits) I don’t remember it. I do remember my law-school-trained mind spinning like a kaleidoscope gone crazy, unable to focus either on my misery or what I had to do next on Bill’s behalf.  Which was to (1a) sell the red Honda he had driven; (1b) try to return to the distributor for credit his newest and virtually unused portable oxygen concentrator,  five pounds lighter than the one Medicare had provided — for which he had paid nearly $2000; (1c) close his credit card accounts; (1d) notify his insurers of his death; and (1e) verify that I would not need to probate the will, since New Jersey doesn’t require it if the decedent owned nothing solely in his own name at the time of death. There was also what had to be done, all by myself, on my own behalf. Which was to (2a) sell the condo as soon as I could, since it was both too big and too expensive for me to maintain alone much past the end of the calendar year without seriously dipping into capital; and also to (2b) find another place for the cats and me to live as soon as the condo was sold, although the money to buy this “other” place, when I found it, was solely the equity in the still unsold condo because I was pretty sure I didn’t qualify for another mortgage while I still had one. (A few weeks later, I found out I was right.  I was coldly informed by loan officers at two separate banks that I would need to show at least $10,000 in monthly income to carry the two mortgages, even for only the three months or so before the condo would presumably sell.  Hah.  That was not something I would ever have been able to do, even when I was working.)

The (1a-1e) through (2a-2b) in the prior paragraph is of course so neatly organized because I am writing this piece six months later; organization or any kind of  plan was completely beyond me that weekend.  My mind lurched from “close his credit card accounts” to “see if I can get a mortgage” to “should I take the car to Honda or try to sell it myself” to “do I know a lawyer I can consult about the will who won’t charge me” to “the condo is an unsightly mess of medical equipment and books all over the floor” to “how could he leave me to deal with all this by myself?” to “I need more Orgain from Amazon, chocolate flavor this time.”  Then one of the cats, still missing Bill, would come to the bed in the middle of the night to be scratched, petted and comforted. And I would cry, in the dark, into her fur.

Everyone who called advised doing nothing for a while until I felt stronger.  That was good advice. But the Type A person I also am thought: What do they know?  “Listen to what your body wants,” said Bill’s niece, a psychotherapist practicing in Israel.  Well, all right.  Unfortunately, by Monday — when I attempted to walk to the brick mailbox stand two driveways away from mine — I realized I could move only very slowly and was wobbling. Was my body trying to tell me something? I began to eat again, carefully, because I knew I should, and also because kind acquaintances were deluging me with offers of meals at their house, meals at restaurants, prepared meals brought in (one even vegan and surprisingly tasty) — none of which I could in good conscience refuse — and also because a survey of the refrigerator and pantry cabinet revealed so much food stored there to tempt Bill’s appetite that I would have to give it away, throw it all out or begin consuming some of it.  Sleep didn’t come as easily as the meals.  And the trips to the mailbox were becoming even more difficult. By the end of the first week, I was making them only every other day.  (Since Bill was the King of Catalogues, that meant the box was so stuffed when I did eventually open it that I hardly had the strength to pry out its contents and scraped the outsides of my fingers raw on the metal sides of the opening.)  A friend who picked me up to feed me rotisserie chicken and salad had stone slabs for steps up the grass from her driveway to the house. I had to ask her to let me clutch her arm to make it to the front door.

This was both embarrassing and worrying.  I was all alone in Princeton.  Although they were warm and supportive on the phone, one son lived in Florida and the other shuttled back and forth by train between work in D.C. and weekends with his still-young children and wife in New York.  If I became too weak to take care of myself, not to mention all the things needing to be done, then what?  By the time I stepped out the door to get the mail a week to the day after Bill had died, my heart was pounding loud and frighteningly fast, I gasped for breath as if I too had suddenly developed pulmonary fibrosis, and I was so dizzy the ground under my feet spun around. As I proceeded very slowly towards the box with legs far apart, like Charlie Chaplin, to keep some kind of shaky balance, I felt I might be on the verge of dying — not that very minute, but soon.  Although my head was still revolving like a top, I was able to grasp and hold on to one thought:  Call a doctor before it was too late.

Easier said than done.  For nine and a half years, since coming to Princeton, Bill and I had been seeing an internist highly recommended by the nurses in the major medical practice nearby as the most patient-friendly.  Dr. L. was indeed apparently much interested in each of his patients, at least for the time allotted him by the insurance companies, and even seemed to remember just about everything about you when you showed up for bi-annual checkups without first having to review your chart in your presence. But as we each grew older, and more symptoms of this and that surfaced, Bill pulled away. He was mostly seeing specialists by then, anyway.  I hung on to Dr. L. until last year, although Bill kept urging me to switch to Dr. G., another internist in the same practice whom he liked much better on the one or two occasions he had consulted him.

The cause of Bill’s disenchantment with Dr. L., and eventually mine, was that patient-friendly as he was, Dr. L. was a worrier. He was also perhaps over-impressed by our academic and professional credentials and shared all his proactive medical hypotheses with us.  If there were a symptom or a complaint, he not only knew all the conditions and diseases of which it might be a harbinger, which would need to be tested for, but would share all this (potentially scary) thinking with us.  In my seventies, I was sufficiently healthy that Dr. L.’s proclivities as one’s medical advisor didn’t really bother me. Later it did, very much. By then I had enough to worry about, without contemplating dire possibilities that might not come to pass.  But that’s another post, for another time.  Suffice it to say that last March, Bill prevailed, I switched to Dr. G., and obtained an appointment for the end of May.

Thus, in the middle of May when I suddenly needed him, Dr. G. had not yet met me. Moreover, a phone call revealed he was completely booked through the end of June, and certainly couldn’t squeeze in a new patient he didn’t yet know.  Although no one suggested it, I felt unable to return to Dr. L.  Nor would I under any circumstances take myself to the Princeton ER, given my recent experiences at that hospital.  (See “After Death, What?” TGOB, July 29, 2016.) However, Dr. G.’s appointment secretary was very kind when she learned my husband had recently died and I felt as if I were going to die too.  Her husband had died two years previously and she had felt exactly the same way.  She would try to find someone else to see me. (I did hope it wasn’t going to be Dr. L. but kept that to myself.) Good as her word, she called back an hour later with the name of Dr. S., who had recently joined the practice and therefore had an opening, five days from then (no, not sooner), at 8 a.m.

Beggars can’t be choosers.  In the meanwhile, I googled Dr. S.  His photo showed pink cheeks, a big smile on a round young face, lots of neatly combed dark hair; he looked as if he’d just emerged from college. Although he hadn’t gone to any of the medical schools known to me through fifteen years of living with Bill (a psychiatrist), young Dr. S. had practiced for a couple of years in Philadelphia, could probably determine whether I was dying or not, and could then hand me over to the appropriate specialist(s) to treat whatever was wrong with me.

Dr. S. looked exactly like his picture.  He might have been a classmate of  one of my sons when in their twenties.  Still, he was an M.D..  I explained why I was there. Husband died ten days ago. Heart fast and pounding. Unable to breathe. Legs like cooked spaghetti.  So dizzy the world was turning round and round.  No balance.  Unable to think a straight thought.  “Well, let’s see,” said young Dr. S. soothingly, reaching for his tools.  My blood pressure was normal.  My heart rate was normal.  My blood oxygenation level was 98-99 (so the breathing was normal).  “Then why am I feeling like this?” I demanded. “As if I were going to die?”  Young Dr. S. must have been a very good student in whichever medical school he had attended.  He knew exactly what ailed me.  It sounded as if it had come right out of a textbook.

“Somatization!” he declared.  

He meant it was all psychosomatic.  The pounding heart, the breathlessness, the vertigo, the loss of balance, the inability to focus.  I had never heard the noun form before, but if there’s a medical adjective, there’s usually a big and latinate related noun. “It’s just a reaction to your loss,” he said to me in a voice appropriate for addressing a small child or someone not quite with it.

And what was I supposed to do with this information? Learn to live with it? Dr. S. mentally turned pages till he reached the one that dealt with treatment for the grieving patient. He then told me I needed sleep and food. I was to get eight hours of sleep, and if I couldn’t fall asleep when I went to bed, I should get up and read till I felt sleepy, and then try again.  I was to eat whatever I wanted, even if it was french fries, without worrying about it, because I now needed the calories.  I suppressed various impulses to tell him I wasn’t stupid and instead listened impassively, not quite the good and grateful patient contemplated by the medical textbook but close enough. What was the point in pushing it with young Dr. S.?  He was doing the best he could.  He also told me to exercise. “Even if I’m moving like Charlie Chaplin, but more slowly?”  Yes, exactly.  And then I would start to feel better.  Well, perhaps that’s what the medical textbook said. “Could you also write a scrip for ten days of a mild sleeping pill?” I asked.  “To get me through till my appointment with Dr. G.”  No, young Dr. S. feared I might become addicted.  If I really couldn’t sleep after the getting up and reading for a while, I might try Benadryl, which is over-the-counter and not (he said) addictive.

While waiting in line at Rite-Aid to pay for the Benadryl, I thought about Dr. S.’s big word for feeling like death.  Somatization. I had never believed that symptoms of what were later diagnosed as real physical complaints, like chronic fatigue syndrome or Lyme Disease, were psychosomatic, even if they were first dismissed as such.  Apparently I was wrong. It seems in some instances the body does speak up to tell you what you’re really feeling.  Mine, for instance. It was saying that all of me was suffering from mortal grief, even where my heart was actually beating regularly and my lungs actually functioning normally. I had just been been in shock too great to realize it.

And that did make me begin to feel better.  Or at least less worried. The Benadryl was a bad idea; one tablet knocked me out for eleven hours and left me woozy for twenty-four.  But after that I began to fall and stay asleep without help, except from the cats.  So although I continued to weep often and spontaneously when by myself, I had become somewhat more optimistic about being able to manage living without Bill, even if unhappily,  by the time my scheduled appointment with Dr. G. rolled round.

The following week, the undertaker called me to come pick up Bill’s ashes. For the $3,000 I had paid him he probably would have kept them for a while, had I asked. But better sooner than later, and be done for good with that unctuous and falsely sympathetic man. The bag containing the plastic urn seemed surprisingly heavy when I picked it up, although Bill hadn’t been tall or big-boned.  Regretfully, I needed Mr. Unctuous to carry it to my car for me.  I hadn’t thought to bring a cane (although there were eight or nine of Bill’s, in various styles, in the house) because I wasn’t used to needing one.  But I was still afraid I might fall if I held the heavy bag while going uncertainly down the incline from the funeral home door to the curb.  However, I wasn’t dizzy anymore, and that was something.  Besides, Dr. G. had written a scrip for physical therapy to get me stronger again and I already had a first appointment scheduled.  He had also given me another prescription, for thirty days of a mild sleeping pill.  I did fill it, but by then I no longer wanted or needed sleep aids. Six months later, the thirty little pills are still in the drawer of my bedside table.

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AND THEN…

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I can’t tell you what happened after I drove away from the Princeton hospital in the middle of the afternoon on May 6 because I don’t remember much about it, other than that I kept swerving erratically as I turned the wheel and was repeatedly honked at.  I suppose I survived because the honkers were also good drivers.  But I did manage to get myself back into my own driveway behind Bill’s red Honda, and then into the house through the garage door, carrying the hospital plastic bag containing everything he had had on when we had checked him in seven days before.  I couldn’t unpack it.  I just put it down.  It was all I had left of him.  It would still smell of him.  And I had to save that until I could cry.

Just then I couldn’t cry.  I sat on the family room sofa to call my two sons to tell them it was over.  They must have said the right things, each in his fashion, but I don’t remember what they said.  Did my voice shake? It must have.  I don’t remember.  Then I must have used Bill’s phone, which had a reduced overseas rate plan, to call his oldest niece in Israel and afterwards his Swiss first wife, mother of his older son, in Geneva.  His niece, who is a psychotherapist, was very kind. I do remember the kindness of her voice, but not her words. It was something about now I had to take care of myself.  His first wife (who speaks English and also likes me) was so matter-of-fact that I actually do remember what she said. It was that she was sorry but after all he had lived a long life, and I had my sons. She also invited me to visit if I ever come to Switzerland.

After that, I must have fed the cats and petted them and petted them.  They knew something was wrong.  Bill hadn’t been home for a week and I was clearly not myself.  They kept rubbing their furry cheeks against me in an unusual display of either affection or distress. I cleaned the litter boxes, and forced myself to drink an Orgain, of which there were over a dozen left in the fridge for Bill.  (Orgain is a somewhat more nutritious, and expensive, version of Ensure, that last nutritional resort for people who have difficulty eating enough).  I was numb.  I put my checkbook in my purse for tomorrow and went upstairs with the sole thought that I had to get some sleep because the next morning I needed to drive to the undertaker, who would have by then removed the body from the hospital — to pay him for having done that and for the cremation that would follow.  We had some old sleeping pills in the bathroom cabinet, but I was afraid to take one, or even half of one, lest I not wake up in time.  I stayed in bed all night, but if I slept I don’t remember it.

The undertaker was professionally solicitous. Sleepless and still in a state of shock, I resented it. He didn’t know me, he didn’t care about me, he was really only interested in my business — which he was going to get anyway because he took care of 90% of the dead in Princeton (as he was quick to assure me when I inquired).  I particularly resented his oily deference and lowered voice when, after obtaining the requisite information for the death certificate, and learning that I had no interest in buying any of his pretentious urns, he informed me that the fee for having removed the body and for the cremation would be $3,000, payable before I left.

Does anyone haggle in such circumstances? Did I really have any viable option?  Deciding it might be more prudent to hold on to cash for the time being, I kept the checkbook out of sight and gave him a credit card in payment.  My mother’s identical cremation in Palm Springs, California, sixteen years earlier, had cost slightly over $300.  I asked him what he charged people who couldn’t afford the fee.  He said if they could prove they were being supported by the state, there was a reduced price, which they could pay in installments.  He also said because his establishment was in the center of town and he needed a lot of space in back for mourners to park, his real estate taxes were very high. He was sure an educated, professional woman such as myself would understand.

The educated professional woman who was allegedly myself didn’t understand much at that point, but she did understand that in a money economy, everything costs.  Even dying.  However, she didn’t have time to brood about it.  There were many other things to attend to.  I had to finalize Bill’s affairs. As important, or even more so, I needed to decide what to do about the condo, which was both too big and too expensive for me to maintain by myself past the end of 2016.  The best time to try to sell it was soon, because people with young children who were looking to buy in Princeton wanted to do it in time to register those children in the Princeton public schools before the beginning of the school year.  So if I were going to sell, I had to get it staged and on the market by early July.  But first, I had to get myself back in shape to function.

Easier said than done.  Bill died on a Friday.  By the following Monday, I felt — felt physically, in my nearly 85 year-old body — as if I might be dying too.

MY DARLING BILL IS DEAD

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i.

He died at the University Medical Center of Princeton on May 6, 2016.

ii.

It was sudden, and not sudden. Although this blog has candidly addressed my thoughts and feelings as I enter late life, there have been significant and purposeful omissions. The biggest is that from its inception two and a half years ago, Bill and I both knew he had a fatal disease for which there was no hope of cure.

For a long time it was a theoretical knowledge, obscuring our horizon but not imposing much practical restriction on daily life.  Back in 2005, when we had been together only four years and still lived in Massachusetts, he felt unwell and checked himself into the ER of Mass. General.  It turned out he had been overdosing with vitamin D, which is unwise (as he should have known, being an M.D. himself).  In the course of the complete workup that hospitals are wont to do when addressing a systemic complaint, a perceived crackle in the lungs led to a scan, which led to a hospital pulmonologist showing up at his bedside to announce bluntly that, by the way, he had idiopathic pulmonary fibrosis and the average life expectancy for that disease was three years.

“Idiopathic” meant, in his case, no known cause.  Fibrotic scarring of the delicate lung tissue can be generated by continued exposure to and/or inhalation of strong irritants, after which it continues even where there is no further exposure. Bill had never worked in an environment polluted with noxious substances, never smoked, never lived in a heavily trafficked inner city.  He was a psychiatrist who sat in a chair in a comfortable and well ventilated suburban office for most of his working life and listened to unhappy people talk about their problems. “Why him?” is another of life’s unanswerable questions.

Moreover, the diagnosis was inadvertent.  If he had not gone to the hospital because of the excess Vitamin D, the fibrosis would not have been discovered until one or both of the two symptoms of this hopeless disease manifested themselves: continued coughing and/or shortness of breath.  Bill was symptom-free in 2005 and remained so for eight more years. That said, it’s not a diagnosis one can forget. He took a copy of the scan with us when we moved to Princeton and began a rigorous program of what he hoped would be proactive “alternative” treatment for lung issues.

These I will not describe, other than to remark that for the rest of our time together half our freezer and refrigerator were given over to expensive, time-dated and time-consuming antioxidant substances to inhale or swallow, and that one of our two linen closets contained enough supplements to open a store, plus boxes of bottled remedies to ward off any incipient cold that might develop from a sneeze or a sore throat, because even a cold could turn into a bronchitis or a pneumonia that his compromised lungs might not be able to handle.

iii.

The threat of death by suffocation was not all Bill confronted by the time he was 83 or 84. But although several of his other medical conditions were extremely painful, they were not fatal, and all but one tended to be cyclical, so there were periods of relief.  He was brave, patient, not particularly complaining, and appreciative of everything he felt life still had to offer.  However, these other ailments distracted me, so that I didn’t note with precision when the coughing began.  Looking back without notes, I place it in the fall of 2013 — two and a half years ago, which was when I began to blog.  (I don’t think there was a connection, but I must say that although he was never a demanding man, when doing all the chores around the house and tending to him began to consume much of my time, the blog was a great help to me; it could be written at home but also connected me to the world outside.)

The coughing was awful, and incessant, and utterly exhausting.  It sounded like a large dog barking non-stop.  If I had gone out to market or the drugstore, I could hear it coming from the front bedroom or living-room when I pulled into the driveway.  One or two of the neighbors inquired.  Not wanting to explain about the fibrosis, he said he was having a bad bronchitis.  Perhaps he thought that was true.  Somewhere he had picked up the idea that if the coughing was productive, as his was (meaning it produced phlegm), it was not a fibrosis symptom.  If so, he had been misinformed.  Even if productive, that kind of coughing is a sign of fibrosis.  In any event, he found a medication, Gabapentin, which suppressed the cough (although not the cause) and another year went by.  He could still climb the stairs in the condo without getting out of breath, and if he seemed to tire on short walks more quickly than before, that could be attributed to age. The last time we strolled the paths in Marquand Park together, in May 2014 (a visit memorialized in this blog with many photos of the trees he loved), he needed to rest on a bench halfway along.

iv.

At the end of 2014, the stairs became more difficult for him and we began the search for a pulmonologist to work with.  We did not revisit a second time the full-of-himself head honcho at Columbia Presbyterian in New York who had replied to Bill’s initial question, “How long do I have?” with a shrug and the curt, “Pick a number.”

In Princeton, the kindly fellow who ran the pulmonary rehabilitation lab at the University Medical Center where Bill would die a year and a half later told him he was off the bell curve for death from pulmonary fibrosis because he was still alive nine and a half years after diagnosis. That was cheering but also wrong. As we were told by the third pulmonologist, who took over when the kindly fellow retired, the clock begins to run from manifestation of symptoms, which is usually when the disease is diagnosed, and not from the time of an inadvertent diagnosis made when there were not yet symptoms.

Oxygen entered our house.  Medicare paid for a large concentrator with a fifty-foot cannula attached. (Easy to trip over.)  It stood at the foot of the stairs, so the cannula would reach Bill’s side of the bed in the master bedroom.  He didn’t need it for a while. He did need the seven-pound portable rechargeable oxygen concentrator that could be carried, with effort, in a shoulder bag or a backpack whenever he left the house or did anything requiring exertion. It had to be recharged every two hours or so, which meant we couldn’t stay out very long.  By now, I was doing all the driving anyway.

There was also Esbriet, an obscenely costly prescription medication the FDA had just approved; in Europe it had been shown to delay the development of the fibrosis somewhat if taken at maximum dose.  Bill was never able to achieve the maximum dose.  Even a two-thirds dose closed his esophagus so he couldn’t swallow, made him round-the-clock nauseous, and removed all his appetite, so that he lost significant weight — for him, always trim-to-slender, not a good thing. The third pulmonologist thought his problems with it might be age-related; younger patients seemed to tolerate it better. He recommended stopping it entirely or else trying an alternative and equally costly new drug, Ofev, that similarly slowed fibrosis development but had a different, although equally undesirable, side effect: constant and urgent diarrhea. Bill rejected the alternative without trial.

v.

At the beginning of 2016, a fourth pulmonologist arrived at the University Medical Center. She seemed empathetic and had a father with emphysema and his own oxygen concentrator at the foot of the stairs.  That may not have been the best of reasons to switch, but Bill wanted to feel comfortable with his doctor, which was probably as important as anything at this point. She put him on oxygen 24/7, which meant he began using the fifty-foot cannula day and night. Essentially, he was trapped in the house. It also rubbed sores on the tops of his ears. We had to put moleskin rectangles there.

The pulmonologist at Mass. General who had said the average life expectancy was three years did not offer detailed statistics.  50% of pulmonary fibrosis patients live five years from onset of symptoms; the other 50% don’t.  Since the coughing had not begun till the fall of 2013, I calculated that with some luck we might have another two or two and a half years together. Bill, tethered to his tubular lifeline, wanted to believe me but I think now probably realized it was not likely to happen.  He read books about the meaning of life, listened to Baroque music, watched nature videos, and slept more. We also held hands much of the time, even as we fell asleep.  I felt he was drifting into some space in his mind where I couldn’t follow, seeking to make peace with death.  Someone commented on this blog that the few and sporadic pieces I managed to post in 2016  were very dark.  Of course they were: It was just too hard to be lighthearted, even in a virtual world that wasn’t our real one.

vi.

Bill turned 88 on January 27.  After he died, I found in the recent Google history of his iPad the question, “What percent of people live to 88?”  Was he trying to comfort himself?  April 13 was our fifteenth anniversary but it was raining, so we postponed celebration.  A few days later, he made the effort to shower, shave and dress nicely; we went out to dinner at a local Italian restaurant. (He loved pasta to the end.)  I let him out at the door with his portable oxygen, parked, and walked back to join him.  Although neither of us knew it, it would be our last outing together.

Near the end of April, I came down with the worst flu I had had in forty years (despite our both having had the recommended flu and pneumonia shots the prior fall).  For four days, I could hardly get up in the morning.   Of course, he caught it from me.  Just as I was beginning to recover, he sank fast. He fell out of bed the following afternoon, so weak I couldn’t help him off the floor.  I had to call a neighbor and her teenage son; the three of us managed to hoist him onto the mattress. That night it happened again, at one in the morning.  This time I called the police. They sent an ambulance and the EMTs, as well as a young police officer.  The head EMT wanted to take him to the hospital, but Bill refused and signed a paper to that effect.  However, the following day, his fourth pulmonologist insisted I bring him in.  He had to rest several times between the door and the car. When we reached the hospital, I brought a wheelchair out and helped him and his portable oxygen into it, parked, and came back for him.  I had never pushed him in a wheelchair before and was picturing in my mind that I might be doing that from now on.  I still thought there would be a “now on.”

vii.

He arrived on a Friday. He died the following Friday.  A nasal swab indicated that what we both had had was a viral flu, which in his case had turned into viral pneumonia with a probable overlay of bacterial pneumonia.  For three days, while he remained relatively upbeat, they pumped him full of steroids, antibiotics, anti-viral medication and much more oxygen than the home concentrator could generate, but were unable to reverse the infection in his lungs. They then suggested a bi-pap mask, which would prevent him from eating.  They also explained that they couldn’t leave him on it long,  and the next step would be intubation (breathing on a respirator) followed, if that didn’t work, by a tracheotomy.  Bill adamantly rejected the idea of tracheotomy; he refused to live connected to tubes and machines.

At first he decided against intubation as well, knowing that if it didn’t assist him in beginning to breathe on his own, he would never come off it, meaning when they removed the tubes, he would die.  But then on Tuesday, he changed his mind. One of the hospital pulmonologists was encouraging intubation because with the extra time it could provide, the medication might eliminate the infection and he would have another two or three months of life. Eventually, he agreed.  “Let’s give it a shot,” he said.

viii.

I spent Tuesday night at the hospital.  We both knew it might be our last night together, because intubation involves so much morphine that he would be unconscious from then on.  But we had time to tell each other most of what we wanted to say.  When I couldn’t quite understand him through the bi-pap mask, he wrote in a little notebook I still have in my bag. I did most of the crying. He said he wasn’t afraid to die anymore, that slipping away under morphine was not a bad way to go, and that he was only sorry he was leaving me.  He also said many other things I shall treasure all my life, but they are not to share.

By Friday morning, it was clear that intubation was an exercise in futility; it was not helping him breathe on his own. The doctors asked if I wanted to continue. I called Bill’s son in California, with whom I had been in daily contact. He agreed we should let him go. I had asked the attending that day how long Bill might live when removed from the respirator.  He said a few hours, or even a day. They removed the tubes at 2:35 in the afternoon.  He was pronounced dead at 2:52.  I sat by his side, and held his hand, and watched the blood drain from his face.  Although the hand remained warm for a while, his face turned yellow.  Whatever was lying in the bed wasn’t Bill any more.  Bill was gone.