-sgw / may 25, 2017
-sgw / may 25, 2017
Despite some of the roughness of city life, I’m cherishing my last few weeks here, before I move. I’m doing some urban writing/poetry as a tribute to my time in this city.
It’s been a truly blustery and chilly spring, but nevertheless a wonderful time for birdwatching. Even in the most urban environments these ancient winged creatures have learned to thrive, maybe better than me!
Last week I took care of a young man who was dying from Cutaneous T Cell Lymphoma. This is a rare kind of non-Hodgkin’s lymphoma of the skin. His disease had progressed rapidly, spreading to many organs, and his body was covered in open lesions. There is no cure for this type of cancer, treatments only help reduce the symptoms.
He came to us for a second opinion, one hospital already having recommended hospice. He was seen by the oncologists, the dermatologists, the medical team and the infectious disease team. Each team agreed his disease was so widespread and his complications so vast, there was nothing to be done but comfort care and possibly treat the symptoms of infection.
His skin was rotting off his body, soaking the sheets in a foul yellow and green drainage. The lesions were infected, and he had countless antibiotic resistant bacteria in his blood. His abdomen and his feet were swollen. His urine was the color of rust. His blood pressure dropped as his organs started to shut down. His medical team repeatedly recommended hospice. Over and over, he refused, stating we wanted treatment. However, he was simultaneously refusing all care that would at least treat the symptoms of his widespread infection.
His severe illness and a tragic past had affected his personality. He was mean and labile and extremely withdrawn. He wouldn’t allow the shades to be opened or the TV to be on. He lay curled up with his head under a blanket for the entirety of his two weeks in the hospital. He refused the recommended body soaks, lab draws and medications. He cussed at everyone who entered his room, he was angry and unreasonable. He didn’t need a doctor to tell him he was dying, he had already buried himself.
At this point, the psychologists decided his cognitive state was not well enough to allow him to make decisions for himself. The person to make decisions would be his sister, who was his POA. She had previously been caring for him at home, but by now had unmistakable caregiver fatigue. She was overburdened by school, two jobs and a lack of social support. A week and a half into his hospital stay she abandoned him and changed her number.
He now required a guardian to make decisions for him. As recommended by his medical team, the guardian could make him DNR (do not resuscitate) and facilitate his transition into hospice. The guardianship process is long and complicated. It usually takes weeks. He never made it. He died on the floor and was coded for thirty minutes before being pronounced dead.
He died alone, afraid, angry and in pain.
His death, undignified, painful and callous, could have been so different on hospice. Hospice would have made it a priority to relieve his pain and suffering and provide spiritual support. It would have encouraged family members to be by his side. It would have removed him from the acute care setting. It would have improved his quality of life and given him a dignified death.
As a part of his healthcare team, I can’t help but think what we could have done differently. His last week of life was spent fighting against his doctors, nurses and family, and in an unbearable amount of physical and spiritual suffering. Despite his verbal refusals regarding hospice, his behavior made it obvious he was ready to die and wanted to die in peace. Yet we were only hearing the words, not seeing the whole picture.
Many people think of hospice as a quick killer. In reality, hospice prioritizes comfort and quality of life. Some people actually live longer on hospice care because they are relieved from the burdensome side effects of treatments. Death does not need to be imminent to be cared for by hospice. Hospice can be for anyone whom a doctor anticipates six months or less to live.
When I heard of my patient’s death yesterday, I felt heartbroken. He was an extremely difficult patient to care for. But there is always more we could have done. He didn’t deserve to die in pain and misery.
It is 5:30 in the afternoon and I am seated on an old wooden bench off the Lakeshore path. This bench faces outward, away from the path toward a small grassy plain with a few large trees. I am on the outskirts of the bird and prairie sanctuary that exists within Montrose beach and harbor.
I am gazing dizzily at the swallows as they fly in circular patterns above the small grassy plain. They soar in a circle, dip, beat their wings swiftly a few times, then soar and dip again. There are too many of them to count, and I find it nearly impossible to track the flight of an individual. They are snatching insects into their beaks as they fly.
I came here with my field guide in the hopes of deciphering whether these are Tree Swallows or Purple Martins. I have decided they are Purple Martins because of their dark bellies and rich glossy color. As I walk closer to the harbor, I see Martin houses where a few of the birds are perched. There are sparrows there too, fearlessly twittering and perching where they please.
An old woman is standing on the harbor, surrounded by a loud group of gabbing gulls, a few aggressive Canadian Geese, and a shy pair of Mallard Ducks. She is scattering food from a plastic bag. A group of sparrows hops around the cement picking at the crumbs left by the gulls.
As I walk back on the gravel path I see a Red-Winged Blackbird on the branch of a low bush. He is making his shrill territorial cries. He puffs his chest out and flashes the red streak on his smooth black wing as I pass him.
Just down the path in front of me, a bright yellow bird darts out of the grass. He lands on the long stem of a dandelion and nestles his short beak into the fluffy white seeds. He is an American Goldfinch. There are two of them now, and they both take flight when a dog and his owner pass by.
Last month I was on my way to pharmacy in the downtown Chicago hospital where I work. I took the two minutes of freedom while off the floor to pull out my phone and check my inbox. I was standing in the elevator when it finally came through, the email I had been intently waiting for. For a long minute, I didn’t get past the word “Congratulations!” I reread the email about five times before screenshotting it and texting my grandma.
Now, after being officially admitted to graduate school, I am facing all the details. There are forms, deposits, registrations, emails and orientation. There is a new vocabulary in my head that contains words like “post-baccalaureate”, “condominium”, “custodial account” and “residency classification”. There is a constant buzz of worry and speculation about all the upcoming change.
Next month I’ll load my couch and bookcases into a fifteen-foot U-Haul and move to a new town. I wonder what grad school will be like, where I’ll go running, if I’ll get a job on the side, and who my friends will be.
I’m squaring up to the change like a boxer in the ring. I know the fight is coming but I can’t predict the blows. So I’m on my toes, telling myself I’m in my best shape and ready for the challenge. Every minute spent worrying is wasted energy. All the details will inevitably fall into place. And while I’m waiting for the bell to sound, I might as well enjoy bedside nursing, lazy days on the couch with my roommate and a few freezing cold Cubs games.
Three years ago I was looking for a volunteer opportunity in healthcare. I applied to multiple hospitals in the city. The applications were long and no one got back to me. Finally, I came across Marillac St. Vincent, an organization that offers support for seniors. In their companion services program, a case manager pairs a volunteer to an isolated senior in the community. The volunteer visits the senior on a regular basis and offers social support and companionship.
This is how I met my friend. I visit her about every other week at her nursing home. She is an elderly woman with cerebral palsy. She is wheelchair bound and has very limited use of her arms and hands. Her sight is limited and she has hearing loss. It is difficult for her to chew food, open candy wrappers, answer the phone and even swallow. She needs assistance with nearly every activity of daily living. She spends her days alone in her room, caring for her many plants and listening to the radio.
This morning I pushed her wheelchair down the block to Starbucks. She ordered a caramel mocha with whip. When we are together, we simply sit and visit. Many times she tells me about her childhood. In sharing her memories with me, she keeps her life story alive. She tells me what she plans to eat for lunch that day, what the weather will be like over the weekend and any updates on her plants. She shares the woes of living in a long term care facility.
I am not her nurse or her caregiver or her family member. I have nothing to give her but my time and a listening ear. Our relationship bridges a hundred gaps of differences. People always give us questioning stares when we are out. Yet our friendship brings meaning and joy to her day and has taught me many invaluable life lessons.
Last week I had to tell my friend my upcoming plans to move out of state. She was heartbroken. Our relationship has come to mean so much to both of us. Three years ago I could have found a short term volunteer opportunity in a hospital or at a soup kitchen, but instead I became a visiting companion to a disabled elderly woman, and we are now devoted friends.
Becoming a visiting companion to an isolated senior is in constant demand. Most any long term care facility is appreciative of visiting services, even unplanned ones. And there are many senior service programs like Marillac St. Vincent’s. Visiting a senior in the community might seem so small and insignificant, but for the lonely life you have the opportunity to touch, it means the world.
One of my New Year’s Resolutions this year was to read a book by Leo Tolstoy. In February I bought a cheap paperback version of Anna Karenina from Amazon. I started reading the 923 page novel last month. It was daunting at first, with its onion skin pages and tiny print.
Yet there’s something significant about reading a giant classic. At first you feel like you’ll never be able to get started. By the later half, you can’t imagine your daily routine without the book. Years down the road when you ponder the book sitting dusty on your bookshelf, you’ll remember just what chapter of your own life you were in while you were reading. You’ll remember how the characters moved you and how the story permeated your thoughts.
Some other giant novels I have read include Les Misérables, Gone With the Wind and East of Eden. These epics have deep character development and the stories follow over a long time span. The reader has the opportunity to delve in and become truly affected by the author’s writing.
I’m now on page 333 of Anna Karenina and the pages are turning easier and easier. The love story is classic and the writing is beautiful. Reading Tolstoy, and other epic novels, is like gazing at an old piece of art and diving into history through it. There’s so much to be learned, so much to be felt. It’s worth the commitment.
“When a new life chapter forces a change in geography and life style, a poet always looks behind before moving ahead. Poets are acutely aware of time, and the transition from one life stage to another is never ignored, and often an emotional event. Poets are not afraid of a little sadness. A poet will climb the highest hill around, and take a long gaze at the past, before turning toward the new horizon, and charging on.” – TRW
I’ve lived for nearly six years without a TV. I’ve missed a lot of news, sports games and TV shows. But my roommate and I are accustomed to it now. Any shows we really want to watch we find online. We’re better off without the news. And at the slim chance we want to watch a sports event, we go to a local bar.
People are always asking me how I survive. The truth is, there’s actually a lot of things I enjoy about not having a TV in my apartment:
the wooden chairs were scavenged
from the alley dump at night
the blue tablecloth was all she left
after that screaming summer fight
your plants survived the winter
despite the draft and window frost
so many nights we’ve chopped up vegetables
stirred our hope and simmered loss
countless mornings at the table
with eggs and tea and toast
minds humming with our worries
our prayers, our joys, our woes
if our little home had a heart
in our kitchen it would beat
here I have a thousand memories
which I will always keep:
squash risotto on the stove
popping bottles of rosé
mice hiding in the pantry
flowers on a special day
collecting coasters for the table
a card waiting in your place
the crucifix above the sink
washing dishes, saying grace
though there’s a lovely view of Paris
and a travel poster on the wall
when I’m with you in our kitchen
it’s my favorite place of all