Telltale Hearts, page 24
“Okay.… So are you asking me to do that?”
Six months later, I am onstage with her, sitting on director’s chairs in front of two hundred clinicians. We each are holding a mic in our hands.
“Thank you for sharing your story with all of us. It is a very moving story, and it gives me hope. I am sure we are all inspired. Now, here you are, over fifteen years later, speaking to a bunch of doctors and nurses from around the country. Let me give you back the floor to teach us—to give us your advice, based on your experiences—about how to better care for people with severe substance use disorders.”
“I’d be glad to, for whatever it’s worth.”
“It’s worth a lot. It’ll be priceless, actually. So, what advice would you give us?”
“Well, you asked me this once before, so I’ve had some time to think about an answer.” She turns to the audience. “I think the top three things would be: First, make sure you hire substance use counselors who have truly been there and can speak from a place of real, lived experience. Second, don’t give up on people. Even if we say we don’t need your medical help, we do. And even if we seem to not appreciate your acts of kindness, deep inside, we do. So, third, show compassion to people like us. We are human beings who need to be treated with kindness. We are not monsters that need to be shamed or punished for our sickness. Trust me, we already carry enough shame. We may be obnoxious and unpleasant; we may be taking up a lot of your time. All that can be true. But I guess I’d say always try to remember that it’s not about you. Remember that we are the ones who are really suffering. What we need from you is that you witness and acknowledge our suffering. And remember that we need your help. Your medical help and your kindness are critical. What you’re doing is not a waste of your time. Even if we’re not ready to accept your advice, we need to hear it. Because one day, if we’re lucky, we will be ready. I was kept alive by people like you so that one day I could hear it. I am so grateful that I am here today speaking with you, that I am well again, and that I can enjoy my beautiful eleven-year-old daughter. I thank you all from the bottom of my heart.”
Ms. Taggert receives a standing ovation from the doctors and nurses who have been listening to her, rapt, in the downtown hotel’s conference ballroom. Her session receives the highest ratings of any of the twenty-four talks delivered for the course.
What a wondrous woman.
CHAPTER 17
Smoke and Mirrors
HANDS AND DOORKNOBS
As my afternoon clinic begins, Mrs. Beatrice Johnson is, as usual, on time and already waiting for me in my exam room. A seventyish-year-old African American woman with salt-and-pepper hair tightly held up in a bun, she sits in her wheelchair, her lap covered by what appears to be a homemade quilt, and beams a smile up at me.
“Hello, Mrs. Johnson, so nice to see you again. That is a gorgeous quilt. Did you make that?”
“No, those days are over. My sister made this one for me because I always get a chill when I wait for the van to pick me up to take me here.”
I recall that Mrs. Johnson has to take a long paratransit van ride from her apartment in the Sunnydale projects located just off Highway 101 on the way to the airport, in the outskirts of San Francisco. She was born in the South, but her family moved to San Francisco’s Fillmore District in the ’40s, as did many African American families. Her piece of this great migration was a result of families like hers escaping the Jim Crow laws of the South, pursuing job opportunities associated with the massive, war-related shipbuilding industry. Many found lower-cost rental units to live in, including those recently abandoned by families of Japanese descent who had been forcibly removed as part of the Japanese internment. Quickly becoming the vibrant African American center of the city and the undisputed home of the West Coast jazz scene of the ’50s and ’60s, the Fillmore District became known as the “Harlem of the West,” where Miles Davis, Dexter Gordon, Dizzy Gillespie, Billie Holiday, and Ella Fitzgerald were frequent performers. The streets were home not only to jazz clubs but also to churches, barbershops, and small, locally owned grocery stores and food joints. Despite its flourishing cultural life, the district was targeted for redevelopment in the late ’60s—funded largely with federal dollars—with the rationale that the neighborhood was the city’s sore thumb of urban blight and that the government had to “clean up the inner city.”
What has subsequently been termed the Negro removal project resulted in the destruction of thousands of low-rent apartment buildings and homes, leading to the permanent displacement of over eight thousand people, mostly African American. The city’s promise to relocate these families back to the Fillmore was never kept; housing costs had jumped in response to redevelopment, and the promised boom in the local economy to support former residents never materialized. Mrs. Johnson, by then a young woman, was one of the displaced. She found herself going from living a “life at the top” in the Fillmore to living her life at the bottom—in the Sunnydale projects.
“But I used to be the quilt maker in the family. I learned it from my grandma, and then I taught it to my youngest sister. She’s at home most days now and has the time to make these. I just wish one of my grandkids would take it up. You know… to keep it going. Because, well, with these fingers, I just can’t anymore. I don’t need to tell you that.”
She takes her hands out from under the quilt and places them on her lap. They are textbook examples of how advanced degenerative osteoarthritis looks: the fingers unable to extend, the little bones of the distal joints bloated like doorknobs, the intrinsic muscles that give the back of the hand its shape atrophied. Those hands—more like a Gothic rendering of human claws—rest on the lap of this gentle lady.
Mrs. Johnson has eight grandchildren and raised four of them on her own after one of her daughters succumbed to the crack epidemic of the 1980s.
“Yes, well. It is wonderful that you were able to pass this craft on to your sister and that she could give the gift back to you in this way. But don’t give up on those grandkids. Sooner or later, one of them will appreciate the combination of creativity and calm that quilting can give them. And they’ll come looking for you.”
“Now you’re talking like a quilter yourself, Doctor.”
“No, not me. I find my peace in other ways. But how are you doing otherwise?”
We review the status of her arthritis-related pains, pains resulting from the kind of joint damage that had made walking—even with her four-point walker—impossible for nearly two years. We then discuss her mood, as this level of chronic pain and immobility can be emotionally devastating. She reminds me that the two-year anniversary of the death of her husband just passed. A World War II veteran who received his care at the VA hospital, he had been a companion for her every appointment with me. A gentle man, he had always shown her the respect she deserves. When I learned that he had once been a GI fighting the Nazis on the European front, I told him that I was here today only because of men like him—soldiers who had sacrificed everything to liberate my father from a concentration camp. I had told him it was an honor to be able to return the favor by taking care of his wife. I could tell that touched him and stuck with him. As a dedicated caregiver to her, he had enabled me to do my job better.
Mrs. Johnson continues, “But this year, I think I’m okay. This year, I was sad for only a few days, and it passed. There’s so much hustle and bustle in the house, I am too busy just trying to keep track a who’s comin’ and who’s goin’!”
I then ask her about the status of her breathing. She also suffers from emphysema, the gradual disappearance of lung tissue resulting from tobacco smoke exposure, a progressive illness that literally takes one’s breath away, slowly but surely. She had adamantly denied ever smoking, but she had lived with a lifelong smoker. Her husband, like so many soldiers, had become addicted to the cigarettes handed out freely by tobacco companies, courtesy of the US Army. Frank had died of emphysema. A horrible way to die, like drowning in open air.
“For the first time,” she says, “I think it hasn’t gotten worse. At least not since the first anniversary of Frank’s death. I’m not sure if it’s my lungs just deciding to gimme a break for a change, or if it’s because I am doing less due to me being stuck in this wheelchair.”
I hold my tongue because I know that the cause of the stabilization of her lung disease is the absence of tobacco smoke in her environment related to the death of her husband. She likely knows this too, but it is too painful to admit.
“Ahhh, who knew that being in a wheelchair could improve your health?” I sarcastically quip.
She laughs the laugh of an ex-smoker, a laugh that ends in a classic coughing spell. I give her some tissue and she spits some phlegm out and rolls the tissue up in a knobby, clawlike hand.
Her vital signs show that her blood pressure is high; I ask her to roll up her sleeve so I can repeat it. I confirm it is elevated. This is the second visit in a row with an elevation, so we discuss increasing the dosage of one of her four blood pressure medications. She begrudgingly agrees.
I quickly do my charting, refill her five oral medications for arthritis, hypertension, high cholesterol, and diabetes, plus two inhalers for her emphysema, and remind her that it is flu season and that she needs a flu shot. Before I am finished with my sell job on the need for the flu vaccine, she has disrobed her right shoulder, taking her cardigan half off, leaving only a tank top.
“I always dress right for the doctor. I been doin’ this too long to get all layered up.”
“I do appreciate that, Mrs. Johnson.”
I poke my head out the door and ask my medical assistant to get the flu shot ready.
I pop back in, grab her chart, start to say my goodbyes, and move to make my way out. I’ve spent twenty minutes with her in what is a fifteen-minute visit slot. Not so bad.
She interrupts me midsentence.
“You know. It’s funny. This same shoulder has been really hurting. It makes it hard for me to even lift my arm to brush my hair. I stopped using it, it hurts so much. Probably my arthritis, right? Now it’s in my shoulder too.”
We physicians call this the doorknob complaint, a patient complaint that arises the moment the doctor grabs hold of the doorknob to exit the room and end the visit. We dread these doorknob complaints because, apart from interrupting one’s clinic workflow, they tend to be especially time-consuming and—for reasons that are not entirely clear—often reflect more serious pathology relative to other complaints discussed in the earlier, structured portion of the visit.
In general, the shoulder is an oddly behaving, yet critical, joint. Disuse of the shoulder as a result of pain and associated lack of prompt diagnosis and treatment can lead to a frozen shoulder, a poorly understood phenomenon in which all mobility is lost, often for many years. Leaving Mrs. Johnson, even temporarily, with no legs to walk on and only one arm to lift with is not an option. So, I let a breath out to release my mini-frustration, put on a concerned look, and say as kindly as I can, “Let me have a look.”
Shoulder pain is the fifth most common complaint in primary care, but many primary care physicians are simply not comfortable with the inner workings of what they perceive to be a region of the body requiring an orthopedist. I, on the other hand, like many other internists, developed particular areas of specialty expertise, and the diagnosis and management of shoulder pain had become one of mine.
I do a cursory shoulder exam on Mrs. Johnson to rule out a rotator cuff tear. I determine quite quickly that she has point tenderness at the right acromioclavicular (AC) joint, the fixed joint that connects the tail end of the collarbone to the curved hook of the shoulder blade, a juncture that lies just above the miraculously mobile shoulder joint itself. The AC joint is the part of the shoulder girdle most commonly affected by degenerative osteoarthritis, and AC joint arthritis is one of the more common causes of shoulder pain in primary care settings. So, it all makes sense. I don’t want to give her any anti-inflammatory pain medications for this, as these can worsen high blood pressure. Fortunately, AC joint arthritis is remarkably responsive to low-dose steroid injections, so I offer her one. She agrees, and I ask my medical assistant to bring in the injection tray for me to use before she gives the flu shot. Two minutes later, I am through, and I tell Mrs. Johnson that the injection can take forty-eight hours to kick in. I show her a few shoulder exercises I want her to do once the pain recedes, so as to avoid frozen shoulder syndrome. I schedule her for a nurse visit in eight weeks to follow up on her blood pressure and tell her to let that nurse know at that time if she still is suffering from the shoulder pain. I finally can leave the room, still feeling good about what transpired between us.
SOLDIERING ON
Two months later, I am cruising through my afternoon clinic, feeling a rare rush of satisfaction for being on time with every patient. I am nearly done. Only two patients left. This means I not only will be home for dinner with my family but that I may even be able to make the dinner. As my medical assistant places my last patients into their rooms, I drift to the central hallway to gloat over my afternoon schedule, congratulating myself for the unusual efficiency with which I managed my busy day. Like a sports fan repeatedly enjoying the highlights of a game he knows his team already won.
But I am foiled again. A handwritten name has been penned into my last add-on slot: Beatrice Johnson. Next to her name is a yellow sticky note:
PLEASE STOP BY TRIAGE RE BJ—SUE.
I have a minute before my next patient is ready, so I trot down to the nurse triage room.
“Whassup, Sue?”
“I just put Mrs. Johnson back into the waiting room. She’s still complaining about pain in her shoulder. I wouldn’t have added her on, but I’ve known her for fifteen years, and she’s not a complainer. She is one of the founders of our Grandmothers Who Care group… that group of Black grandmas we were able to bring together to support each other around the loss of their children during the crack days and the stress of needing to care for their grandkids. She is one tough cookie. But she was in tears when I tried to get her to move her shoulder.”
“No problem. Thanks for picking up on that. Just let her know I’ll see her once I finish up with these last two, okay?”
Fifteen minutes later, I see my medical assistant wheeling the quilt-covered Mrs. Johnson into one of my exam rooms. Her torso is twisted in such a way that I can see from down the hallway that this stoic lady is indeed in a great deal of pain.
I finish with what had been my last patient of the day and glance at my watch: 5:35 p.m. My medical assistant lets me know she’s off now and that I’m on my own. Clinic is winding down. I thank her and grab Mrs. Johnson’s chart, knock, turn the doorknob, and enter.
“Hello again. Oh, poor you! You look miserable. So, I didn’t cure you, despite all my fancy needles and magic potions? Tell me what’s going on.”
She attempts a smile but puts her left hand out, beckoning for me to wait a moment. She lets out a series of wet coughs, and with each cough, she winces in pain, favoring her right shoulder.
I hand her the tissues.
“Take your time,” I say. “I am here. And you made it here. We’re in no rush.”
She relaxes her body and catches her breath.
“It’s this damn shoulder. It’s worse. I still can’t lift it. But now it hurts even when I don’t move it.”
“Did the injection help, even for a short time?”
“You want the truth, Doctor? No. Not at all.”
“Darn. I am sorry. Have you been able to do any of those shoulder exercises?”
“Are you kidding? I can barely sleep. Every time I try to roll over, I’m in agony.”
I wonder whether I could have been wrong about the AC joint and whether this could be degenerative osteoarthritis of the shoulder joint itself, a very painful problem that requires joint replacement. Or an infected shoulder joint. I glance at her chart: no fever.
“Wow, okay. Let me take a look again.” I gently withdraw the right side of her same cardigan, again revealing the tank top.
“I’m sorry, I haven’t been able to change my clothes for a week.”
“It’s okay. It’s fine.”
But it’s not fine. Just next to the AC joint, I see a walnut-size, multicolored, oozing nodule emerging from her collarbone. It has a fetid odor. I put my gloves on and slowly work my way from her midline down the length of the collarbone, gently pushing and prodding the bone as I proceed. As I approach the nodule, she again winces in pain, and tears well up in her eyes.
Damn it. I realize it’s likely a Pancoast tumor. A rare cause of shoulder pain, a Pancoast tumor is an aggressive type of lung cancer arising in the upper lobe of the right lung that can present with shoulder pain, although typically with no pain with shoulder movement. But in her case, eight weeks prior, her shoulder had hurt when she moved it because the tumor likely had already invaded the collarbone. It is not surprising that I had misdiagnosed it, and the fact that she presented with bone pain meant that it had already been inoperable at that time. But I still feel guilty, and I vow to do right by her moving forward. Because, damn it, now the cancer is eating through that bone and is eroding out of the skin of her upper chest.
“Are you able to see this? This spot that is so tender?” I ask as I point to her AC joint.
She gingerly rotates her arthritic neck down and to the right, and her eyes follow suit. “See what?”
I detach the little mirror from the clinic wall above the sink. I sit beside her and place my finger on her distal collarbone as I hold the mirror in front of her.
“This painful bump. Can you see it now?”
“Oh yes. Yes, I do. What is it? It looks awful,” she says to my reflection in the mirror.
“I think this bump is the reason you are in so much pain. I noticed you coughing a lot when I came in. Have you been coughing more since I last saw you?”
