This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
I doubt Matt has any idea of the impact of his act, quite remarkable in my opinion especially considering it seems like he didn't intend for what happened to be publicized.
In honor of Nurses' Appreciation Week this week, I am posting a letter that I recently sent to the Director of Nursing at the hospital where my dad was treated in hopes that she is able to use the information I provided to recognize three nurses at that facility who provided truly extraordinary care during my dad's illness.
Dear [Director of Nursing],
I am writing to let you know
about three nurses who provided outstanding care for my father, William L.
Bullard, when he was a patient on the oncology floor in December of 2010.
My dad was initially hospitalized
at Centennial just a few days short of his 67th birthday on October
23, 2010, when he was transported there due to disorientation experienced on a
ten-mile run. An MRI showed a large
mass in his brain that was later revealed to be Glioblastoma Multiforme, which as you know is Stage IV brain cancer. He had
surgery and spent a few days in the Neuro-ICU and then a few more on the Neuro
floor, and, although in both cases the nursing care was adequate, my family was glad when he was discharged after a total of ten days there.
A few weeks later, on December
21, 2010, my dad was re-admitted to Centennial, and again in the ER the nursing
care was fair, in most cases competent but not outstanding by any stretch. When he was moved up to the Oncology
floor, though, we were lucky enough to have
our case assigned that night to a nurse named Meredith who provided exceptional
care for Dad and who took both Dad and my family under her wing, even
requesting to have Dad as her patient on other shifts she worked while we were
on her floor over the next several days. She provided highly commendable
care for Dad and for us; she seemed to see not just Dad but those of us caring
for him as her patients, and she gave us not only the physical support we
needed but some much-needed emotional support as well. As my sister later
said,Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and
that we will always remember. To us, Dad wasn’t a terminally-ill cancer
patient; he our champion, an Ironman athlete, brilliant in thinking and indomitable
in physical presence. Very
unfortunately, though, during the course of his illness, the majority of the
health care workers with whom we came into contact appeared to see him just as
a patient, and honestly it seemed like some of them didn’t really see him at
all.
My dad was very sick and as a
result was intermittently confused and distressed while we were in the hospital
that second time, but he took an instant liking to Meredith, as did we.
She bore a resemblance to one of my sister’s best friends from high school, a
girl named Angie. Despite the fact that Dad hadn’t seen Angie in many
years, he too noticed the similarity in Meredith’s appearance and started
calling her Angie, which Meredith said she took as a compliment. “I feel
like I’ve known you for a long time, too!” she told Dad, which made him smile
and warmed our hearts.
Nurse Meredith, aka “Angie”,
was with us again for the 7 p.m. to 7 a.m. night shift that second night we were on the Oncology floor (12/22/10). My sister and I stayed overnight with
Dad and were impressed by not just Meredith’s competence but also by her
compassion and her coolness under pressure, particularly when things started spiraling out of control for my dad late that
night. For no apparent reason, his
heart rate shot up and he started having trouble breathing; we called for
Meredith, who sprinted down the hall to check on Dad but couldn’t figure out
what was going on. Dad’s heart
rate continued to climb, and then he started saying he was freezing and then
making comments that we didn’t quite understand, with lots of talk about death which shook my sister and me to the very core. Despite the temperature
of the room being warm and several blankets being placed over Dad in the bed,
his teeth were chattering so much that we had to strain to understand
him.
My
sister and I were terrified; we agreed later that it was the first time we
thought Dad was actually going to die right in front of us, and we felt
completely helpless. Meredith
stayed right with us and was such a calming force for Dad and for us. At one point, the three of us were
almost lying on top of him trying to warm him up and to calm him down. After more than an hour, we realized that
neither verbal nor physical comfort measures were going to be effective in
battling the panic and the terror Dad was experiencing, and Meredith raced to
get a sedative for Dad, which, five minutes later, had him resting soundly.
Looking
back, I’m not sure that my dad would have made it through that night without
Meredith, and certainly my sister and I would have been much more at a loss
without her expertise and, more importantly, without her kindness, which is something
that stays with us to this day.
Although
Dad ended up being stabilized for the night, unfortunately his condition
continued to deteriorate, and, on Christmas Eve, he was transferred to the ICU
– actually, due to hospital staffing shortages during the holidays, to the
CCU. There we dealt with many challenging
issues, some involving nursing and some not, but suffice to say our stay there
was a terrible experience overall, and we were very glad when Dad was moved back to
the Oncology floor two days after Christmas – and even happier when we realized
that we had once again been lucky enough to be assigned to an exceptional nurse, this time in the form of an RN named Dave. Again due to staffing problems that we didn't really undersand, my dad was placed on a unit that didn't really fit with his diagnosis; this time it was the Bone Marrow Transplant unit on the Oncology floor.
My dad had been struggling to
take in enough calories for quite some time; he often reported feeling “zero
hungry” or, even worse, feeling nauseous at just the idea of food. When
we clued Dave into the fact that we were very concerned about Dad’s caloric
intake, Dave offered lots of “extras,” some of which Dad said “yes” to and then
ate (including a Snickers bar). Without even being asked, he brought
extra blankets because Dad continued to say he was cold, and he provided extra
pillows to prop Dad up so that he felt warmer and more secure. Unlike our days in the CCU, with Dave it felt like we were no longer having to beg for what Dad needed; in fact, it
seemed like Dave somehow anticipated not just Dad’s physical needs but also
many of his emotional ones as well.
Throughout
his stay in the hospital this second time around, including the four days in
the ICU, pain from a bed sore on his lower back had continued to plague
Dad. Dave was excellent at gently re-positioning Dad in different ways in
the bed so that the pressure was taken off that area; he made an effort each time
he came into the room to explain what he was doing and why to Dad and to us and
even had me demonstrate my understanding of skills like propping Dad up with
lots of pillows and rolled blankets. He wasn’t just acting as a nurse; he
was also a teacher and a friend.
Tag-teaming with Day Shift
Dave, as we called him, was Night Shift Jim, another nurse in whose care we
were grateful to have Dad placed.
Like Dave, Jim was very patient in teaching us about how to address Dad’s medical
needs. Both of them somehow balanced empathetically caring for Dad with
providing us with a listening ear and a shoulder to cry on in the
hallway. They seemed to be available whenever we needed them, but we
didn’t feel like they were hovering or intruding. Looking back, I see that,
whether it was because they saw up close how very sick Dad was or because they
took the time to listen to him and to us, they
somehow “got” the seriousness of Dad’s condition and even the rhythm of his
illness and of our grief.
After almost two weeks of
seeing Dad in a downward spiral, one morning I stood in the hallway outside of
Dad’s room crying, and Dave came over and put his hand on my shoulder. He
said he had heard my conversation with the oncologist during which I had asked
how we would know when it was time to consider hospice – and the oncologist had
essentially said “Not yet,” which I
felt like was not an answer to my question. “He doesn’t see what
we see,”Dave
said. “I know!”I wailed. “Sometimes that is the
case with oncologists,”he said gently.“It’s like their only
goal is a cure, and sometimes that just isn’t going to happen. Sometimes
treatment doesn’t work. Sometimes treatment isn’t what a patient really
needs or wants. Sometimes the oncologists don’t know when to say when.”He paused, and then he added,“You can ask for more
information on Hospice without making any kind of commitment.” As my sobbing subsided, I considered his words
carefully. I knew we needed help and more information before making any
kind of decision. I knew we had to figure something out and that we
needed to do it quickly.
Later
that day, my sister and I approached Dave to talked more about hospice. We had seen
a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in
an oncology-ward waiting room, I must say, but we ended up being glad to have
the info), and we were familiar with two other
providers in the area – one was the agency already providing hospice care for
my dad’s mom, and the other had helped care for my mom’s mom in the end stages
of her battle with cancer almost 18 years before. Dave suggested that we
make an appointment with a representative from all three agencies to learn
about each one. “I think you should sit each of the reps down and ask them
specifically,‘What makes your agency the best choice for us?’”
We
took his advice to heart, and we did just what he had suggested.
In what came to mirror the
way I desperately wanted to shield Dad from the knowledge that he had cancer
around the time of his surgery, I pulled out all the stops to avoid having him
know that we were signing on with hospice. This seems incredibly short-sighted
now, butat the time I wanted the focus to be on
living, not dying, even then.
When I talked to Jim about my plan, he let me tape a sign to the outside
of the door to Dad’s room that said,“DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME
TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.” I'm sure he realized the ridiculousness of my request - as if shielding Dad from knowing about hospice could save him from what I really wanted to protect him from - but he respected my grief process and also, I guess, my need to try to control the very few things that I possibly could at that point, and I was very grateful for that.
While Dad slept that night, my sisters and
I talked to Jim again about how worried we were that we wouldn’t be able to
take good enough care of Dad at home. Jim was very reassuring and even
helped us to make a list of supplies that we would need to have on hand at
home, again honoring our desire to feel that we had some kind of command over an out-of-control situation. He sang the praises of hospice care and of the support they had to
offer, which we soon learned to be the absolute truth.
Looking back at my dad’s last
few days in the hospital, which turned out to be just about a week before he
died, I am not sure my family would have decided to take Dad home on hospice
there at the end without the input and the support we received from both Jim
and Dave. For my family and
certainly for my dad, as my mom and my sisters and I have discussed many times
over the past couple of years, while changing the setting in which Dad spend his last
few days probably wouldn’t have lengthened his life any, having him at the hospital instead of in the comfort of my parents' home certainly would
have changed the quality of that time for him – and for us, and that is why we will forever be grateful for the way things happened there at the end of Dad's hospital stay.
I can’t count how many times over the
past couple of years I have intended to try to get a message to these three
nurses to thank them. I hope they
are still with Centennial and that the details I have provided will help you to
identify them so that they can be recognized, although appreciation in any form
seems inadequate given the gift with which they left my family through the
truly exceptional care they provided during the most difficult time of our
lives.
In case this does make it to
Meredith, to Jim, and to Dave, though, here’s my message: thank you, and may
your kindness and your skill be recognized and rewarded; my family will never
forget you.
Have you ever found out about something - or someone - and then experienced a disappointment akin to grief when you simultaneously found out that they were no more? That happend to me today, when I was lucky enough to be directed to this video, which goes along with a brilliant 2005 Kenyon College commencement speech given by author David Foster Wallace, who died in 2008 at the age of 46, tragically and ironically by his own hand:
At the bottom of this entry is the transcript from his speech, which includes more commentary than does the video, in case you're interested in reading it in its entirety.
This piece speaks to me. It's about perspective - and choice - and everyday freedom. It reflects many of the things I've learned over the past couple of years and many of the thoughts I have on a daily basis, essentially: you can feel lucky or not; it's your choice.
I heard a story one time about a guy who went to the grocery store one afternoon and came across a mother and a child much like the one in this video. The man said he watched the kid throwing a fit as he stood in line beside the mom and the child and that, after a hard day in the office and a hectic shopping experience, he said, "Get control of your child," to the mother, rolling his eyes in exasperation. Later in the week, he coincidentally ended up in line with the same mother and child at the same grocery store again, with the kid whining AGAIN. This time, though, the man thought twice before unleashing on the mother; instead, he looked her in the eye and said, "Parenting is the hardest thing I've ever done." Her eyes welled with tears, he later reported, and her posture changed completely; in fact, a few minutes later, she whispered something in the little boy's ear and then he laughed and the fit was over. "I learned an important lesson about myself that day - and about humanity," the man later said. And sodidI when I heard that story: words are powerful, but not as powerful as the choices we can make on a daily basis.
HERE'S THE TRANSCRIPT:
Greetings and congratulations to Kenyon's graduating class of 2005. There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says "Morning, boys. How's the water?" And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes "What the hell is water?"
This is a standard requirement of U.S. commencement speeches, the deployment of didactic little parable-ish stories. The story turns out to be one of the better, less bullshitty conventions of the genre, but if you're worried that I plan to present myself here as the wise, older fish explaining what water is to you younger fish, please don't be. I am not the wise old fish. The point of the fish story is merely that the most obvious, important realities are often the ones that are hardest to see and talk about. Stated as an English sentence, of course, this is just a banal platitude, but the fact is that in the day to day trenches of adult existence, banal platitudes can have a life or death importance, or so I wish to suggest to you on this dry and lovely morning.
Here's another didactic little story. There are these two guys sitting together in a bar in the remote Alaskan wilderness. One of the guys is religious, the other is an atheist, and the two are arguing about the existence of God with that special intensity that comes after about the fourth beer. And the atheist says: "Look, it's not like I don't have actual reasons for not believing in God. It's not like I haven't ever experimented with the whole God and prayer thing. Just last month I got caught away from the camp in that terrible blizzard, and I was totally lost and I couldn't see a thing, and it was 50 below, and so I tried it: I fell to my knees in the snow and cried out 'Oh, God, if there is a God, I'm lost in this blizzard, and I'm gonna die if you don't help me.'" And now, in the bar, the religious guy looks at the atheist all puzzled. "Well then you must believe now," he says, "After all, here you are, alive." The atheist just rolls his eyes. "No, man, all that was was a couple Eskimos happened to come wandering by and showed me the way back to camp."
It's easy to run this story through kind of a standard liberal arts analysis: the exact same experience can mean two totally different things to two different people, given those people's two different belief templates and two different ways of constructing meaning from experience.
Because we prize tolerance and diversity of belief, nowhere in our liberal arts analysis do we want to claim that one guy's interpretation is true and the other guy's is false or bad. Which is fine, except we also never end up talking about just where these individual templates and beliefs come from. Meaning, where they come from INSIDE the two guys. As if a person's most basic orientation toward the world, and the meaning of his experience were somehow just hard-wired, like height or shoe-size; or automatically absorbed from the culture, like language. As if how we construct meaning were not actually a matter of personal, intentional choice. Plus, there's the whole matter of arrogance. The nonreligious guy is so totally certain in his dismissal of the possibility that the passing Eskimos had anything to do with his prayer for help. True, there are plenty of religious people who seem arrogant and certain of their own interpretations, too. They're probably even more repulsive than atheists, at least to most of us. But religious dogmatists' problem is exactly the same as the story's unbeliever: blind certainty, a close-mindedness that amounts to an imprisonment so total that the prisoner doesn't even know he's locked up.
The point here is that I think this is one part of what teaching me how to think is really supposed to mean. To be just a little less arrogant. To have just a little critical awareness about myself and my certainties. Because a huge percentage of the stuff that I tend to be automatically certain of is, it turns out, totally wrong and deluded. I have learned this the hard way, as I predict you graduates will, too.
Here is just one example of the total wrongness of something I tend to be automatically sure of: everything in my own immediate experience supports my deep belief that I am the absolute centre of the universe; the realest, most vivid and important person in existence. We rarely think about this sort of natural, basic self-centerdness because it's so socially repulsive. But it's pretty much the same for all of us. It is our default setting, hard-wired into our boards at birth. Think about it: there is no experience you have had that you are not the absolute centre of. The world as you experience it is there in front of YOU or behind YOU, to the left or right of YOU, on YOUR TV or YOUR monitor. And so on. Other people's thoughts and feelings have to be communicated to you somehow, but your own are so immediate, urgent, real.
Please don't worry that I'm getting ready to lecture you about compassion or other-directedness or all the so-called virtues. This is not a matter of virtue. It's a matter of my choosing to do the work of somehow altering or getting free of my natural, hard-wired default setting which is to be deeply and literally self-centered and to see and interpret everything through this lens of self. People who can adjust their natural default setting this way are often described as being "well-adjusted", which I suggest to you is not an accidental term.
Given the triumphant academic setting here, an obvious question is how much of this work of adjusting our default setting involves actual knowledge or intellect. This question gets very tricky. Probably the most dangerous thing about an academic education--least in my own case--is that it enables my tendency to over-intellectualise stuff, to get lost in abstract argument inside my head, instead of simply paying attention to what is going on right in front of me, paying attention to what is going on inside me.
And I submit that this is what the real, no bullshit value of your liberal arts education is supposed to be about: how to keep from going through your comfortable, prosperous, respectable adult life dead, unconscious, a slave to your head and to your natural default setting of being uniquely, completely, imperially alone day in and day out. That may sound like hyperbole or abstract nonsense. Let's get concrete. The plain fact is that you graduating seniors do not yet have any clue what "day in, day out" really means. There happen to be whole, large parts of adult American life that nobody talks about in commencement speeches. One such part involves boredom, routine and petty frustration. The parents and older folks here will know all too well what I'm talking about.
By way of example, let's say it's an average adult day, and you get up in the morning, go to your challenging, white-collar, college-graduate job, and you work hard for eight or ten hours, and at the end of the day you're tired and somewhat stressed and all you want is to go home and have a good supper and maybe unwind for an hour, and then hit the sack early because, of course, you have to get up the next day and do it all again. But then you remember there's no food at home. You haven't had time to shop this week because of your challenging job, and so now after work you have to get in your car and drive to the supermarket. It's the end of the work day and the traffic is apt to be: very bad. So getting to the store takes way longer than it should, and when you finally get there, the supermarket is very crowded, because of course it's the time of day when all the other people with jobs also try to squeeze in some grocery shopping. And the store is hideously lit and infused with soul-killing muzak or corporate pop and it's pretty much the last place you want to be but you can't just get in and quickly out; you have to wander all over the huge, over-lit store's confusing aisles to find the stuff you want and you have to manoeuvre your junky cart through all these other tired, hurried people with carts (et cetera, et cetera, cutting stuff out because this is a long ceremony) and eventually you get all your supper supplies, except now it turns out there aren't enough check-out lanes open even though it's the end-of-the-day rush. So the checkout line is incredibly long, which is stupid and infuriating. But you can't take your frustration out on the frantic lady working the register, who is overworked at a job whose daily tedium and meaninglessness surpasses the imagination of any of us here at a prestigious college.
But anyway, you finally get to the checkout line's front, and you pay for your food, and you get told to "Have a nice day" in a voice that is the absolute voice of death. Then you have to take your creepy, flimsy, plastic bags of groceries in your cart with the one crazy wheel that pulls maddeningly to the left, all the way out through the crowded, bumpy, littery parking lot, and then you have to drive all the way home through slow, heavy, SUV-intensive, rush-hour traffic, et cetera et cetera.
Everyone here has done this, of course. But it hasn't yet been part of you graduates' actual life routine, day after week after month after year.
But it will be. And many more dreary, annoying, seemingly meaningless routines besides. But that is not the point. The point is that petty, frustrating crap like this is exactly where the work of choosing is gonna come in. Because the traffic jams and crowded aisles and long checkout lines give me time to think, and if I don't make a conscious decision about how to think and what to pay attention to, I'm gonna be pissed and miserable every time I have to shop. Because my natural default setting is the certainty that situations like this are really all about me. About MY hungriness and MY fatigue and MY desire to just get home, and it's going to seem for all the world like everybody else is just in my way. And who are all these people in my way? And look at how repulsive most of them are, and how stupid and cow-like and dead-eyed and nonhuman they seem in the checkout line, or at how annoying and rude it is that people are talking loudly on cell phones in the middle of the line. And look at how deeply and personally unfair this is.
Or, of course, if I'm in a more socially conscious liberal arts form of my default setting, I can spend time in the end-of-the-day traffic being disgusted about all the huge, stupid, lane-blocking SUV's and Hummers and V-12 pickup trucks, burning their wasteful, selfish, 40-gallon tanks of gas, and I can dwell on the fact that the patriotic or religious bumper-stickers always seem to be on the biggest, most disgustingly selfish vehicles, driven by the ugliest [responding here to loud applause] (this is an example of how NOT to think, though) most disgustingly selfish vehicles, driven by the ugliest, most inconsiderate and aggressive drivers. And I can think about how our children's children will despise us for wasting all the future's fuel, and probably screwing up the climate, and how spoiled and stupid and selfish and disgusting we all are, and how modern consumer society just sucks, and so forth and so on.
You get the idea.
If I choose to think this way in a store and on the freeway, fine. Lots of us do. Except thinking this way tends to be so easy and automatic that it doesn't have to be a choice. It is my natural default setting. It's the automatic way that I experience the boring, frustrating, crowded parts of adult life when I'm operating on the automatic, unconscious belief that I am the centre of the world, and that my immediate needs and feelings are what should determine the world's priorities.
The thing is that, of course, there are totally different ways to think about these kinds of situations. In this traffic, all these vehicles stopped and idling in my way, it's not impossible that some of these people in SUV's have been in horrible auto accidents in the past, and now find driving so terrifying that their therapist has all but ordered them to get a huge, heavy SUV so they can feel safe enough to drive. Or that the Hummer that just cut me off is maybe being driven by a father whose little child is hurt or sick in the seat next to him, and he's trying to get this kid to the hospital, and he's in a bigger, more legitimate hurry than I am: it is actually I who am in HIS way.
Or I can choose to force myself to consider the likelihood that everyone else in the supermarket's checkout line is just as bored and frustrated as I am, and that some of these people probably have harder, more tedious and painful lives than I do.
Again, please don't think that I'm giving you moral advice, or that I'm saying you are supposed to think this way, or that anyone expects you to just automatically do it. Because it's hard. It takes will and effort, and if you are like me, some days you won't be able to do it, or you just flat out won't want to.
But most days, if you're aware enough to give yourself a choice, you can choose to look differently at this fat, dead-eyed, over-made-up lady who just screamed at her kid in the checkout line. Maybe she's not usually like this. Maybe she's been up three straight nights holding the hand of a husband who is dying of bone cancer. Or maybe this very lady is the low-wage clerk at the motor vehicle department, who just yesterday helped your spouse resolve a horrific, infuriating, red-tape problem through some small act of bureaucratic kindness. Of course, none of this is likely, but it's also not impossible. It just depends what you want to consider. If you're automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won't consider possibilities that aren't annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down.
Not that that mystical stuff is necessarily true. The only thing that's capital-T True is that you get to decide how you're gonna try to see it.
This, I submit, is the freedom of a real education, of learning how to be well-adjusted. You get to consciously decide what has meaning and what doesn't. You get to decide what to worship.
Worship power, you will end up feeling weak and afraid, and you will need ever more power over others to numb you to your own fear. Worship your intellect, being seen as smart, you will end up feeling stupid, a fraud, always on the verge of being found out. But the insidious thing about these forms of worship is not that they're evil or sinful, it's that they're unconscious. They are default settings.
They're the kind of worship you just gradually slip into, day after day, getting more and more selective about what you see and how you measure value without ever being fully aware that that's what you're doing.
And the so-called real world will not discourage you from operating on your default settings, because the so-called real world of men and money and power hums merrily along in a pool of fear and anger and frustration and craving and worship of self. Our own present culture has harnessed these forces in ways that have yielded extraordinary wealth and comfort and personal freedom. The freedom all to be lords of our tiny skull-sized kingdoms, alone at the centre of all creation. This kind of freedom has much to recommend it. But of course there are all different kinds of freedom, and the kind that is most precious you will not hear much talk about much in the great outside world of wanting and achieving.... The really important kind of freedom involves attention and awareness and discipline, and being able truly to care about other people and to sacrifice for them over and over in myriad petty, unsexy ways every day.
That is real freedom. That is being educated, and understanding how to think. The alternative is unconsciousness, the default setting, the rat race, the constant gnawing sense of having had, and lost, some infinite thing.
I know that this stuff probably doesn't sound fun and breezy or grandly inspirational the way a commencement speech is supposed to sound. What it is, as far as I can see, is the capital-T Truth, with a whole lot of rhetorical niceties stripped away. You are, of course, free to think of it whatever you wish. But please don't just dismiss it as just some finger-wagging Dr Laura sermon. None of this stuff is really about morality or religion or dogma or big fancy questions of life after death.
The capital-T Truth is about lifeBEFOREdeath.
It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over: