Honorable Mention in Writer's Digest Memoirs/Personal Essay category 2023
After suffering a stroke and consequent fall, I have been in ER, in hospital, in rehab, and now home.
My brokenness was profound – right leg and foot frozen, broken bone in my back, slight loss of fine motor movement in my right hand – my art and writing hand.
My degree of healing since then seems nearly miraculous and has given me new appreciation of my body and my “village.”
But nothing could have prepared me for the indignity of being “patient-ized.”
The hospital was a madhouse in the midst of Covid. They did not realize I had had a stroke until about Day 4. The rehab nursing center where I spent a month was even crazier (One Flew Over the Cuckoo’s Nest).
In the nursing home, the “call button” at my bedside is my only link to human help– my only link to the nurse’s aide who might answer before I wet my pants –adult diapers – or worse. I try to figure out how soon to press the call button for help. At first inkling? When pressure begins to build? Certainly, don’t wait until last minute!
Some aides come late to the call. This is a source of great anxiety. Then a stranger is wiping my bottom and giving me a new “brief.” Ghosts of babyhood, with all its helplessness, lurk.
That call button is now central to my existence. But it resides at the end of a cord that snakes among a jumble of other cords – for a phone, a remote for the bed, and others. These cords invariably fall from the nightstand onto a tangle on the floor. At night, though substantially paralyzed, I lean over and fumble around the floor for that lipstick-sized lifeline. In the dark – because the button for the lights is down there, too.
A patient is a person who immediately loses status as soon as she signs the papers and slumps into a hospital or nursing home bed. The patient thereby loses “statehood” – the state of being a free, thinking, respected, choice-making adult.
One of the first sounds I notice in the nursing home is from a woman across the hall. When frightened, she emits sounds like birdcalls, high pitched whoop-whoops. They are almost melodic – not cries or yells. But I know the likely terrors that lie behind those sounds.
More ominous sounds come in the night. The creaking of a cart going down the empty hallway. I think of the Tale of Two Cities and the tumbrel carts leading victims to the guillotine.
The carts might be dinner arriving, or the nurse with medicines, or injections to plunge into my belly. Possibly, medicines prescribed by doctors I never see, who never see me, who know me only from reports in the computer.
When I ask a nurse to tell me the names of medicines she is giving me, she huffs and says, “I can’t remember. Do you want me to go back to the computer and write down every one?”
“Yes,” I say.
“Yes,” says my outraged sister, who is visiting me at the time. This sister is one of several advocates who do battle with the staff on my behalf. But they cannot be with me all the time. To feel safe and cared for, I would need a 24/7 advocate who questions every medicine given or not given, every incident of careless, dangerous, or uncaring treatment.
For a while, this nurse reluctantly writes down all the medicines she gives me at night. After awhile, she stops. The other nurses do not even tell me verbally what I am being given, and most egregiously, they do not tell me when they are not giving me a needed medicine. I notice that one medicine is not among my nightly ones and ask about it.
“The pharmacy ran out,” the nurse tells me.
I am without this critical medicine for three days.
Often, I hear a kind of shuffling or clanking sound with the carts, like the dragging, tired feet of women who work for 12 hours doing all the hands-on patient care. Many go home to babies, older children, and aged parents to care for.
These nurses aides are poorly paid and hard used. But they also are now the backbone of what we once called “nursing.” If ever I am shown a kindness, any hands-on care, it is from one of these women.
Registered nurses have become pill dispensers and statistics-takers. I soon learn that these machines they rely on can be wrong. Machines malfunction, they fritz out or are not available when needed – “sorry, it’s down the other hall” (blood pressure monitor).
Computer data can be faulty or incomplete because reports are made by nurses and doctors who have no time to do them. I have a knock-down, drag-out argument with one nurse –whom I think of as Nurse Bossypants and who calls to mind all the scary, bad nurses I’ve seen in movies. She insists she cannot give me a certain medicine because it is not in the report from the hospital.
Nurse Bossypants is wrong. This is a needed medicine that had been prescribed for me in the hospital. But, if she doesn’t see it in the computer, it must not exist.
The reason the medicine is not in the hospital report is that the doctor who made that report was finishing a stint of 12-hour days, three weeks straight, without breaks. She could barely stand from fatigue, let alone dot the “I” s for a report.
There are fallibilities all along this precarious route – human and machine. This data-gathering satisfies insurers and anybody who fears a possible lawsuit, but it devours time. That leaves little time for hands-on care. If a doctor or nurse had been paying attention to my body instead of my data, they might have seen, as one nurse finally did, that my right leg was paralyzed–that I had had a stroke.
Numbers might be the death of me. I never could do math. Now, everything in my world is numerical, 16 744 199 recorded above some other numbers, 14 84 1000. Ad nauseam.
I resent and resist being numbered. But numbers are at the heart of patient care –numbers on computers and screening machines. At the nursing home, soon after I arrive, I hear the ominous creak of a machine coming down the long hallway toward my door. It is 6:30 in the morning. A nurse’s aide opens my door and announces, “Time to get weighed!”
She is toting a machine that looks like a primitive “electric chair.” She expects me to get out of bed – though I am substantially paralyzed – sit on that cold metal chair so she can record my weight. At 6:30 in the morning!
“I don’t think so,” my inner rebel says.
“I don’t wish to be weighed,” I tell the aide.
Startled, she begins telling me why I must be weighed every morning.
I dredge up a reply that stops her mid-sentence: “As a patient I have the right to refuse.”
Just then, Nurse Bossypants, sensing commotion, enters. She looks at me, then at the aide and the weighing contraption, and hears my refusal. Nurse Bossy is forced to admit: “She does.” It is in the rulebook that a patient can refuse treatment, and rules enumerated in the computer, she understands.
Several times throughout my month-long stay, aides bring the electric chair back to my room, trying to get me out of bed to weigh me.
“I have the right to refuse,” I tell each one.
They have numbers they barely need, soon forget, probably wrong. They are not getting my actual poundage.
I create an artwork to signify this triumph: A shadowy figure in the background, me, with numbers in various sizes and fonts super-imposed –with the words: “I am not a number.”
An aide helps me hang this up on the bulletin board in my room.
There is a hierarchy here worthy of the Soviet Era, and secrets worthy of the old Stasi. One of my first days in the hospital, when I am barely able to move, a large black man delivers my dinner. I thank him and ask if he can crank up the head of my bed so I can eat.
“No, ma’am,” he says respectfully and regretfully. “I am not allowed to touch hospital beds.”
The biggest secret of being a patient is that you are not the customer. You may think you should be because that is how doctoring used to work. You hire the doctor who then is responsible to you.
Now, however, there is a nefarious underworld of players – the three-headed mythical dog Cerberus corrupting this once simple exchange. First: the moneymakers, shadowy figures deciding what care you will get, what medicines you will be allowed – the Insurance Industry. Secondly: Big Pharma. Thirdly: for-profit medical centers.
The Patient becomes a commodity in a system that is about making money, satisfying regulations with endless reports, and ensuring the bottom line for owners and investors.
This may well be why the patient is at the bottom of the communications chain in the nursing home, a ridiculous Catch-22 system. The patient presses the call button that summons the aide. The aide listens to a request and tells the patient she will relay the message to the nurse. The aide may or may not relay this message and the nurse may or may not respond.
If the nurse does respond, that day or some other day, she goes to the patient’s room and listens to the request or complaint and, if it is about a change of medicine or care, tells the patient she will relay the message to the Nurse Practitioner. This may or may not happen.
Still, getting to this level is progress. The Nurse Practitioner is the big cheese – the closest thing to a doctor on board. She can adjust medicines or care routines. However, she is one person with about 150 patients to care for.
When an angry, itchy rash spreads over much of my body, my brother tries to cut through the communication chain and speak directly with the Nurse Practitioner. By now I have been itching for three days.
A few days after his entreaty for help, she stops by my room. The exhaustion in her face tells of her 12-hour days. Still, she exudes a rare caring. She is valiantly trying to take care of 150 patients. Where are those shadowy doctors when they are needed?
The Nurse Practitioner orders ointment for my rash that possibly might arrive the next day. Meantime, one of those veteran aides takes one look at my rash, leaves my bedside, and returns with a tube of ointment from some secret stash. She applies it and I am immediately relieved. This takes less than half an hour – vs. the three days stuck in the official communications chain.
Rarely seen are the doctors, available by phone only, normally. The nurses tell me they cannot bother the doctors, especially on the weekends, unless it is an emergency. Being in pain is not seen as an emergency.
There are many excuses as to why I have not for three days received a second dose of pain medicine (non-narcotic) as prescribed by the Nurse Practitioner. The most common being the change in dosage is not in my file in the computer.
I tell my occupational therapist of my dilemma. He tells me, indignant on my behalf: “I was there in your room when that second dose was prescribed for you!”
Aha! I have a witness! After three days of wrangling, and after listening to what the OT has to say, Nurse Bossypants finally calls the Nurse Practitioner and learns that, yes indeed, she had prescribed a second daily dose of pain medicine for me, which Nurse Bossy will now dispense.
As I had said. But nobody believes a mere patient.
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