This narrative of an experience in the “health” care system by a leading writer on Black liberation and feminism underlines how today, more than ever, illness in the U.S. is big business and a source of relentless profit—with the needs of the human individual rendered almost completely superfluous – Editors
When machines and computers, profit motives and property rights are considered more important than people, the giant triplet of racism, materialism and militarism are inescapable of being conquered. A civilization can flounder as readily in the face of moral and spiritual bankruptcy as it can through financial bankruptcy. (Dr. Martin L. King, Jr. Where Do We Go From Here?, 1967)
We are not good at anything else anymore…can’t build a decent car or a television, can’t give good education to the kids or health care to the old, but we can bomb the shit out of any country. (George Carlin)
It could be worse.
Here it comes!
Canadians cross the border to receive health care here.
Here? In the US? Is she referring to wealthy Canadians? Wealthy Canadians who leave behind a socialized health care system to spend thousands at what…the Mayo Clinic? By Canadians, I said to the Medicaid representative, do you mean the wealthy among them? Those with the financial means to drive or fly (sometimes on private jets) to arrive at someplace like Johns Hopkins or the University of Chicago and receive the best medical treatment from the world’s top physician, specializing in lung or prostate cancer, for example?
But the Medicaid representative on the other end of the phone does not want to argue. Neither do I. She knows what she knows! But so do I; however, I will run the risk of coming across as an “angry Black woman.” The irony here is that I am tolerable if I walk about as if I had lost my mind!
In the world in which the Medicaid representative is both knowledgeable and helpful, I am troublesome.
The innocence would wear out even Faulkner!
Fine. Fine. What is it that I’m to do?
Work one hour a month. Just one hour.
I felt faint on that June 3rd of this year, 2014. “Stars” continued with determination to block my view. I could have taken a taxi to the bank and to the pet store. But I am an old trooper, an activist since age 14 in Chicago. Besides, born with a heart condition, I have long been determined to be as independent as possible.
I’m just tired. I’ll go on. I keep moving. I’ll run my errands and save some money if I don’t take a taxi.
Early in 2013, at Dean Clinic, in Madison, the “provider,” a general practitioner, presented me with options: a pap smear, a colonoscopy, a mammogram, a flu shot, a tetanus vaccine. She was waiting. I came with issues I thought were related to my heart. Breathing problems. Shortness of breath. Tiredness. Fast heart beat at rest.
She was still waiting.
I had a tetanus shot in 2002 as part of a medical requirement to teach a year in Ethiopia.
A tetanus shot, I said, reluctantly. How would a tetanus shot make me feel better?
I spent two days suffering from the chills. I slept and slept and could not eat or move from my bed. Finally, still sick but mobile, I arrived at the UW Clinic just two blocks from where I live.
A serious reaction to the tetanus shot. Under “allergies,” Deptacel is now listed under penicillin.
This is April. Medicare kicked in. I am now under the care of “providers” at the massive UW Health academic medical center and health system for the University of Wisconsin. Yes, this is the same institution, with its 13 campuses throughout Wisconsin, where my employment, no doubt, assisted these predominantly white institutions in declaring a commitment to “diversity.”
For now, I am trying to be heard, asking for respect, compassion from the medical branch of a massive institution that promotes a narrative it has labeled “diversity” while, in reality, its donkeys kick and its elephants trample in a cohesive practice of political and cultural cleansing.
By May, I came down with Bronchitis, early pneumonia, and was unable to fill the prescription from my “provider” because my prescription coverage had not kicked in until June. And in June, I received a call from the UW Clinic. Please come over. We need to talk with you concerning the results of your lung X-rays.
Nodules in the lung!
My mother died in 1986 at age 57 from lung cancer. She smoked three packs of cigarettes a day. My father died in 1999 of liver cancer that metastasized and reached his brain. Cancer runs in the family as does heart disease and diabetes.
One pack of cigarettes would last 3 days for me. So I was skeptical. In the meantime, I brought up what I did and what had been ailing me. What about the fatigue and lack of energy? The dizziness? The occasional sensation of disorientation? The shortness of breath? Vertigo and “stars”? The fast heart beat? Heart or these nodules?
Blood tests. More blood tests.
My right foot is numb at times. I’ve felt this sensation since 2009. (And then, in 2009, a doctor at a clinic for women recommended I practice yoga—which, by the way, I have been practicing since 1972! And just how would yoga help?).
Did I ask if it was diabetes? I know it is not diabetes.
What is it? The doctor will be in shortly.
And the doctor comes in, sits down in front of the computer, logs in and races to read and types away.
Once, in 2012 at another hospital here in Madison, a cardiologist came in and typed for 15 minutes before acknowledging me.
We have a plan he says. “We!” Was I involved? Was I able to communicate what was ailing me?
Tests, x-rays, “providers,” and computers!
Speaking recently on Democracy Now!, Dr. Atul Gawande, referring to his colleagues, argues that physicians are becoming the newest “data entry workers.” Physicians and patients, he explains, face a new problem in the “DOS-Windows phase of American computerization”:
[We] are now spending our lives facing the computer screen instead of the patients.
Polls, surveys that have looked at demoralization among clinicians find that the computers are themselves causing tremendous demoralization.
As a result, Gawande explains, “we’ve all become data entry workers, spending more and more time entering data and not doing what is really the work of taking good care of patients.”
And be forewarned: concern about your health and/or health care may result in a call from patient resources!
But first, I must mention the month of July in 2013. In that month, I had traveled to several UW Health facilities across the city of Madison, from the far east side to the far west side to hospitals and clinics in between. It is also the month UW Health discovered that I was once exposed to tuberculosis. Mostly likely, I was exposed to it in Ethiopia. I taught there for a year, but I had been back since 2003. They told me I might have liver cancer too!
For the TB, a City of Madison public health worker called almost everyday, even when the TB sputum culture came up negative. She had to come to my house. I stood my ground. You never know what could happen in the future. Down the road. She recommended a cocktail of drugs to be consumed over nine months.
And what of the side effects?
I know a great deal about the past! I wondered if she had ever encountered such a stubbornness—insolence?–from any other Black woman in this town. I felt sorry for her. Her will had been profaned by some crazy radical Black woman. She left behind brochures on tuberculosis without hope, for she knew, with this woman, the brochures would end up in the trash bin.
Back at UW Health, “providers” order an MRI for liver cancer.
Needless to say, I am a bit frustrated by August. My family currently consists of young and much younger siblings living elsewhere who only know an old sister, possibly and “old” lady now! Friends are the same age or older but spread out across the country. I did not inform everyone about this circus that I thought would come to an end—soon.
But it continued on!
A nodule or two had shrunk! And—does cancer shrink? The results of countless blood studies did not detect cancer. The MRI for liver cancer: negative. Aging spots! There will be 4 CT scans in total. My lungs were last scanned on December 27, 2013; however, the 2 CT scans taken by August showed the remaining nodule or two had not changed.
Good for me, but maybe not so good for the medical institution caring for my health.
So I receive a call from the UW, Patient Resources. Perhaps you would like to talk with a counselor regarding your frustration?
And what is the counselor’s spiel after a few visits?
A “Black” counselor. Caribbean. (Clever! But, at the concentration camps, Jews stood at the openings of the ovens, shoving in fellow victims of this atrocity, too. I have witnessed my share of “Black faces,” lying and dying for crumbs off the Master’s table. How else is this milieu of innocence sustained?).
Shaking her young head. Hadn’t militancy disappeared when the last bullet was fired or the last cell door closed shut on a revolutionary? New day and new era, lady! Is it the frustration about my medical treatment or me, is it me, that must be quashed by medication! No, I don’t think so!
I needed an answer to my questions about feeling fatigued and dizzy, my numb foot, my peripheral vision, but I am told I suffer from anxiety!
In the US, sickness is big business, and it does not matter whether or not you are diagnosed with a medical or a mental illness. It is all good! Disaster capitalism! Either way, we make a profit! Forgetting—the normal process of aging—can be labeled a disease! According to Dr. Allen Frances, you could be labeled with a DSM-5 “psychiatric illness,” in other words, “a mild neurocognitive disorder” or MND (Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life). Every aspect of everyday life has the potential to be a money-maker for the medical industrial complex, Frances continues:
“The often incorrect diagnosis of mental disorder will be based solely on the clinician’s subjective and fallible judgment that the patient’s life has become subsumed with health concerns and preoccupations, or that the response to distressing somatic symptoms is excessive or disproportionate, or that the coping strategies to deal with the symptom are maladaptive.” Opening up the “floodgates to the overdiagnosis of mental disorder, could result, Frances, concludes, “in the missed diagnosis of medical disorder.”
No one had the time or inclination to listen to me.
The past is never dead, said Faulkner.
Every story has a history, and this story certainly did not begin in 2013—and not even then. But I will recall a moment in 2000…
Months before my teaching contract began, the administration at the University of Wisconsin at Parkside tried to have me see a psychiatrist. Why? Well, I had the nerve to arrive in Wisconsin without a car!
Middle class folks just do not do that! Are you middle class or what? What are you? What is your problem lady?
I was supposed to “get the point” and pack my bags, running as two other Black women hired by the English department had done before me. We are not serious about keeping you here!
But here I was to set up shop! To work. To teach, and yes, as a Marxist and Black Feminist, to really contribute to revolution and not reform. The affirmative action director, a “black” man, thought otherwise. He, doing the bidding of his masters, was assigned, surely, to send the woman packing! And quick! He came to the building complex where I rented an apartment to inform the management that I had a cat! I had no intentions of staying there. It was inconvenient, difficult for me reach stores—or any place—other than the campus itself. But there he is walking past me, bold and determined. He is on a mission! So am I! It is hard for me to play the role of Mammy or Jezebel in a narrative featuring the Master and his minions.
When I received a call from management, I was not surprised. Enslaved victims of that “peculiar institution” that was supposedly done away with in 1865, turned in fellow enslaved who kept their minds on freedom. I called the white chair and knew for sure that “Uncle Tom” was still in play: Don’t bother me, said my new chair. Whatever is happening is between you and _____—this has nothing to do with me. I, “a Black chick,” recruited by the liberal arts dean, another white male, was to communicate with the affirmative action administrator. Period!
I should have been on my way before September 2000. But I was still there! And I am still here, in the US, where citizens, well-meaning, patriotic citizens, are programmed to be on the look out for the “crazy,” someone in need of “meds.” It is everywhere now, this fear and “anxiety.” Everyone is a potential patient for some psychotropic, anti-depressant, anxiety disorder of some kind. In Madison, the Mad City, the “progressive,” “liberal” city, it is assumed that someone like me with dreads, here in Madison, with a history of “dangerous” ideas, is crazy. Of course! Definitive proof? Listen to her story.
Nothing she claims to be is real!
In isolation it is hard, but we go on. Somehow. I kept silent about the pants I bought dark green in April of this year. Thirty minutes later, at home, those pants were black. I did not say anything to anyone about the left hand that increasingly missed grasping cups or spoons or towels on the rack. I remained silent about the shortness of breath for the least exertion or losing my balance momentarily while walking or watching the number “6” become “8” then “6” again, all in a matter of seconds.
In my kitchen, at the sink, I would have to turn my whole body to see the stove just inches to my left while I had to pause as I thought I saw something moving, shimmering to my right. “Providers”: You are getting older. Increasingly, a sepia world became the norm for me. I was not thinking clearly. According my GP at Meriter Hospital, swelling of the brain would have begun around February or March. In that month of March, I went to see a UW Health ophthalmologist, a woman. She learns everything she needs to know about me by reading my record on the computer that, incidentally, she moved, that is, placed at the edge of the desk so I could not read what she typed into the computer. Peculiar, but then fear makes one do peculiar things.
Needless to say, this “provider” of health services, too, missed a major piece of the puzzle. My eyes were re-examined at Dean Duehr Davis in September, and the ophthalmologist found that I had lost some peripheral vision in my right eye. If you had come to me, I would have known to do a CT scan—head!
I changed hospitals again and sent a letter to the University of Wisconsin’s Patient Resources. Enough! I established contact with a GP at Meriter Hospital as early as January of this year, 2014, but I believe I canceled at least four appointments, including one scheduled for May 9, 2014. I canceled appointments even while I felt worse and worse. I could not stand to see myself sounding like a child, feeling like a child, as I tried explaining to “adults,” conscious of their race, gender, and class privilege, I have a medical problem and it is not mental nor is it “old age”!
I ended my column with the Black Commentator after 7 years in September 2013. Just too overwhelmed with fatigue. Most of the time I could barely see the print I was typing or reading off the computer screen. I sent some articles out to Open-Ed News, if I could manage to pull together enough determination to not give in.
I can’t go on. I go on, Beckett wrote.
I do my “banking” with Madison Credit Union, but, to save travel time by bus, I ride to a shared branch where I am not a “valued” member, then board another bus to Noah’s Ark on behalf of “my boys,” cats, who are valued “customers” since 2012. On that morning of June 3, 2014, I was not feeling my best. But then I have had such mornings. I go on.
I made it home, but still had to stop by the neighborhood senior coalition to sign some forms. While there, I noticed that I was losing track of what I was doing. I was acting, doing but thinking—what was happening? What was I doing and why again? I am used to taking these opportunities when I travel by bus or walk or ride my bike to think. I am a thinker. I am a cultural theorist; I hold a doctorate in modern American Literature. I am an activist—an activist for whom thinking is the doing. Thinking is life on life, on the human condition. But now, at the neighborhood coalition, I had no idea what I was doing, let alone what I was thinking.
Was I thinking? Only that I was feeling faint. I need candy or water. Maybe my blood sugar is low.
I could barely see the women, 3 of them. I could not make out their faces anymore. It was as if someone suddenly had put brown-tinted lens on my glasses. But I had signed the papers. Why am I lingering? They were busy! Next appointments and people to see. No water! No candy! They acted as if they did not see me. Really see me.
I felt faint but made it to my bike outside the building. I will be careful. Just a bit tired. Over four hours without anything to eat.
I made it to the grocery store, a block from my apartment building. I heard the clerk at the counter say I needed to sit down. I noticed I tried to reach for my purse and then the money. He reached. He pulled out the money. He took me by the arm and led me to a table near the door. I’ll get you some water.
I do not like to make a scene. I said I was “okay,” but sat down at the table. I put the bag with the items I bought in my backpack. The clerk returned with a bottle of water.
Sit for a while, he said. Thank you. I am just dizzy. Tired.
I remember thinking about how nice this young man was. Had I seen him before?
After ten minutes, I found myself at the library next door to the store. Passing the librarian’s desk, I said hello. The librarian, who has known me for some time, looked up.
You don’t look well.
No, I said. Just dizzy.
By the time I had the books in hand and passed the librarian again, I knew this was quite a different experience for me.
This is the sickest I have ever felt.
Don’t ride the bike home.
No. I knew. Can’t ride the bike home. Take the short cut. Just one block, and I step outside, managed to untie my bike and start toward that path for home with a backpack on my back.
I did not think to turn back. I am not sure I even thought it was odd that the concrete and grass had disappeared and all was white before me. I kept moving my feet until the whiteness gave way and there was my apartment building facing me. I do not think I remembered the traffic of cars or bikes on the small street I had to cross. I could not make out the small street I somehow managed to cross. I just kept walking until the blacktop of the parking lot to my building appeared. I cannot remember how I unlocked the building’s back entrance door.
In the elevator, I struggle to grab hold of the bike handles. I am just dizzy. So tired. The door opens on my floor and I reach my apartment door. I suddenly appear inside! I do not recall how I unlocked that door or managed to place my bike in the hallway behind it. I am there, home, talking to my boys.
Mommy was sick outside. Mommy is better now.
Now, I cannot remember what to do and feel as if I were standing and trying to keep my balance on a fast moving merry-go-round that is spinning faster and faster, and I know I will fall. I know I am dangerously close to falling.
I start to take off my clothes. I’m fine. Fine. The bathroom light is on, but I can barely see. The apartment beyond it is black. My boys? Where are they? Then suddenly the lights went out! I am in blackness. It is mid-day and I cannot see anything but the phone I suddenly have on the floor. I am leaning over it, punching at the keyboard, wildly.
I don’t know what made me think I needed to call 911. I had been home just ten minutes. I do not remember hearing the voice of the 911 dispatcher.
I can’t breath. I can’t breath.
This was only the second time in my adult life I have ever called 911 for a medical emergency.
What did I feel that pushed me to making that phone call, I will never know, nor do I remember anything after I made that call. Roughly 15 hours gone! But during that time, I came under the care of a veteran physician of the ER, Dr. John Herm. Technically retired, Herm was there, at Meriter Hospital, that Tuesday, one of only nine days he does appear in the ER.
There was Herm—and there I was, initially coherent, Herm later told me. But then I became unresponsive rather quickly. By 3:28 pm, after at least three EKGs and blood work, Dr. Herm orders a CT scan. A CT scan: Head!
Then the “ah-ha” moment from his charts:
- Round well-circumscribed presumed extra-axial mass measuring 4.7 x 3.9 x 5.5 cm interposed between the right occipital and parietal lobes with associated areas of focal hyperdensity is felt to most likely represent a benign meningioma with associated calcification given only a mild degree of associated mass effect on the adjacent falx cerebri and mild degree of adjacent white matter edema. This could be confirmed with an MRI of the brain with and without intravenous contrast.
Findings were indicated to Dr. Herm by Dr. Guglielmo at 3:40 PM on June 3, 2014.
Christopher Guglielmo-Electronically signed on 06/03/2014 1542
I am told that Dr. Kutlay Uluc, the resident on duty that day, was present when the CT scan was done. Dr. Praveen Deshmukh, the neurosurgeon, orders the MRI and he requests that I receive intravenous anti-seizure medication. I am in the intensive care section of the 8th floor, neurology. The doctors wait, along with a caring and diligent nursing staff. In a “postictal state” recovering from a “significant” seizure, I am not aware of anything.
When I awake, however, I am aware again. It is morning of June 4, 2014. Deshmukh is there on my right and just behind him, stands Uluc. I have lived with a benign, but slow growing brain tumor for 10 years, Deshmukh informs me. A tumor the size of a softball.
Meningioma: a slow growing tumor in the membranes that cover and protect the brain and spinal cord (meninges) (Meriter Hospital). And what are the symptoms of meningioma? According to Johns Hopkins Medicine, the most common symptoms are: headaches, seizures, blurred vision, weakness in your arms or legs, numbness. Other symptoms include: loss of balance, hearing loss, memory loss.
Meningioma is “3 times more common in women than men.” Usually women over 50! There is no “obvious cause” for the growth of this tumor (JohnsHopkinsMedicine.org). Recently I read that both Sheryl Crow and Mary Tyler Moore suffered from meningioma tumors within the last 3 years, as did Elizabeth Taylor during her lifetime. Dr. Deshmukh performs at least 5 surgeries per month to remove meningioma tumors! (A rather high number, I would think).
Surgery the next day, said Deshmukh.
I am now on anti-seizure medicine and hope that within 1 to 3 years I am completely in the clear. In the days after surgery, I noticed my right arm and shoulder were no longer stiff while the numbness in my right foot had disappeared. No more narrowing in and sepia-tinting of the world surrounding me. According to Dr. Deshmukh’s nurse, (the best there is!), the edema has “resolved significantly.” I am practicing yoga again and working to recover my balance. At the time of this writing, I anticipate celebrating my 61st birthday in November.
In the meantime, I can talk and walk. I can think. I remember to be. I remember that silence in the face of absurdity is unacceptable!
And that brings me back to Medicaid—or how to pay for a major medical illness if you happen to live in the US?
Here in Wisconsin, there is something called MAPP, the Medicaid Purchase Plan. If you receive Medicare, you know this insurance pays 80% of your medical bills. MAPP, “provides health care for people with disabilities who work” (Wisconsin Department of Health Services). I was accepted into MAPP just after returning from the hospital in June, and being still hazy from the surgery and a cocktail of drugs, I was not sure of what I signed, except I was told it would pick up the remaining 20% of my hospital bill, plus the follow up procedures and doctor appointments. I did not understand that I had to work an hour a month in order to continue receiving this emergency assistance.
If my income were lower, I would have been eligible for the full Medicaid, but, under 65 years old, I would have had to be seriously disabled. That is, the seizure or the surgery might have left me brain damaged or with extreme limits in my capacity to care for myself. I had a successful brain surgery. But brain surgery nonetheless, and my income is deemed too high (a joke!) and in June, I was expected to work!
Fine. Fine. What is it that I’m to do?
Work one hour a month. Just one hour.
I am to do something for someone or some organization in which I am to be paid in-kind! No cash. So I walked a neighbor to the grocery store and assisted her in her shopping, and walked back with her. My neighbor pays me by purchasing a large bottle of Snapple juice. Problem: Would not I, the one having survived the seizure, the brain surgery, and on anti-seizure pills, would not I need help with grocery shopping or housing, cleaning, or walking those initial months? While I am the one who suffered a major medical illness, it was I who had to pay for taxis to bring me home with my groceries! Is there something wrong with this picture? Another month, a goodhearted mail carrier (and neighbor) drove me to the bank. No, in return, she did not ask for payment in cash or in kind!
The United States is the only country in the world that has a health care system based entirely on the free market economy. What are the consequences of health care that places a market value on its services? (Garda Boeninger, “Crisis of America’s ‘Free Market’ Health Care System: Health Care Is Our Right,” February 2004, Global Research).
Yes, things could be worse—and that is the problem! The bill for the brain surgery (12 hours, including post-op) alone was just over 100,000 dollars; the anesthesia I received, over 6,000; and the emergency room services, over 1,000. Then there were the countless blood tests, and other tests I cannot pronounce or even understand. There were the EKGs, the CT scan and the MRI, the use of Intensive care and the subsequent hospital room, the drugs, plenty of drugs primarily administered intravenously. The medics and ambulance that rushed me to Meriter were not free neither were the food and drink or the clothes supplied to me.
And did I mention the cocktail of drugs I came home with?
Yes, indeed. It is not that it could be worse for me, for all of us, but more that it is worse for humanity, for those of us, the majority on this Earth, who are not among the unconcerned.
It’s not worry; it’s concern.
When asked if he worried, Michael Collins, command pilot for Apollo 11 answered: No! It’s concern.
Collins’ clarification was significant to me prior to June 3, 2014 and has been ringing in my ears since then. It’s concern, not worry! What human being is not concerned about one’s health and overall well-being? Who among humans is not concerned about one’s family and friends, their health, well-being? Ultimately and by virtue of being human, the health and well-being of one’s community, country, the planet and all of life should be hailed as a quality to be cultivated rather than medicated. Reflected in our relations with each other is the mentality and thus the values of corporate think!
It could be worse! We could have capitalist profiteers, supplying their army from the rank and file of the indifferent, the unconcerned, stay in business, and then we will all celebrate from our graves—the best health care system in the world.
But there will be war and war and more war!