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Third Opinion: How My Dad’s Terminal Diagnosis Taught Me the Importance of Self Advocacy

…there I was, sitting in the living room where I was raised, learning from my father that a CAT scan had revealed that the basilar artery that carried blood from his heart to his brain was completely blocked. The diagnosis was that he had mere weeks left to live. The timetable, he confided, seemed inaccurate. “I don’t feel like I’m dying,” he said, hefting my suitcase over his shoulder and walking it upstairs, an exertion that was absolutely against doctor’s orders. 

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Keenan Norris

By Keenan Norris, Special to California Black Media Partners 

One moment, I was decompressing after my day at work in Oakland, the next I was being called home to Southern California to learn something too serious for telephone conversation. I remember playing the same song for the entire six-hour drive down south.

Then, there I was, sitting in the living room where I was raised, learning from my father that a CAT scan had revealed that the basilar artery that carried blood from his heart to his brain was completely blocked. The diagnosis was that he had mere weeks left to live. The timetable, he confided, seemed inaccurate. “I don’t feel like I’m dying,” he said, hefting my suitcase over his shoulder and walking it upstairs, an exertion that was absolutely against doctor’s orders.

The disconnect between my father’s lived experience and his diagnosis was just one rift that would arise between my family and the medical system. In the weeks that followed, he suffered a series of small strokes, obvious symptoms of occlusion. At the local hospitals we took him to, the staff all but told us he was a dead man.

Unwilling to accept this premature conclusion, my family took it upon ourselves to do what the medical establishment seemed unwilling to do. We fought for my father, pushing for referrals and further tests. And it was because of our family’s advocacy that the terminal diagnosis given to my father was not, in fact, the last word on his life.

Debra Law is a lecturer at The Valley Foundation School of Nursing at San Jose State. Formerly a medical-surgical nurse and adult kidney transplant coordinator at Stanford University Medical Center, Law, who is African American, explains that “Patient advocacy can come in many different forms, and it does not require medical knowledge, per se.”

“As a nurse, when we know that a patient has someone in the room that sends the message, ‘My loved one is important.’ If they put the call light on for their loved one, then they are the voice for their loved one,” she added.

Nurses, Law notes, can serve as a vitally important “last line of defense” for patients.

For my family, there was no such defense. Upon disclosing his condition to medical personnel, we were consistently told that the situation was hopeless. My mother, however, would not accept the resignation of the medical establishment and instead talked her way into a referral to a large public research and teaching hospital in the Los Angeles Area.

At that hospital, respected for its leading-edge research, we were informed that only four people on record had survived a complete occlusion of their basilar artery for any significant period. But there might be cause for hope: A subsequent CAT scan revealed that new blood vessels had emerged and were beginning to substitute for the blocked artery.  We would have to monitor my father’s blood pressure all day and all night, the world-class neurologist told us, making sure it did not drop so low that blood flow to the brain would ebb irrecoverably, causing a deadly stroke. The home remedies to increase blood pressure suggested to us were primitive: Salt tablets, hot water, beer. If we could keep his blood pressure high enough for long enough, the new vessels might grow large enough to save his life.

We did our best, monitoring my father’s blood pressure 24/7, rejecting sleep and sanity. The constant care schedule exhausted us. The experience of those days and nights was so far beyond rationality, that it feels like another human body than my own lived through it. I am a writer, but I have no words for what we went through.

After days of that madness, somehow, he was still alive. The strokes began to dissipate.

We returned to the local hospital. The doctor who had originally diagnosed him with the death sentence ordered another CAT scan: The new blood vessels had long since grown strong enough to sustain my father’s brain, he determined.

Why hadn’t the world-class neurologist at the large research and teaching hospital seen what this local physician could see so clearly? Why had my father been dispatched to us in what amounted to a nightmarish outpatient procedure? It might be, the local physician told us, that his counterpart at the research hospital was more concerned with studying my father’s rare condition than with him as a patient. The obscene history of medical experimentation on Black people — from the Tuskegee syphilis experiment to the commandeering of Henrietta Lacks’s cells — was not as well known then as it is now.

The reality of poorer health outcomes for Black people across so many indices is proof of the persistence of racialized maltreatment in our healthcare system to this day.

We need to advocate for ourselves and our loved ones in the medical system. Law cites the Black Infant Health Program and the increase in doulas to address the disturbingly high rates both of Black infant and maternal mortality as examples of Black healthcare advocacy.

Hearing the doctor out, my dad just shrugged. Hadn’t we heard him when he said he didn’t feel like he was dying? He’d been advocating for himself all along.

We went home; my dad weeded the garden under the sweltering sun that afternoon and would go on to live for five more years. I let myself sleep, finally, for the first time in what felt like forever.

About the Author 

Keenan Norris’s books include Chi Boy: Native Sons and Chicago Reckonings and The Confession of Copeland Cane. He had been the recipient of the Northern California Book Award and National Arts & Entertainment Journalism Award. He teaches at San Jose State University.

Third Opinion is a California Black Media (CBM) series of personal essays written by Black patients, advocates and medical providers in California that provide experience-based cues for health and wellbeing as well as insights into understanding and navigating the state’s health care delivery system. The articles produced are resources of CBM’s California Black Health Journalism Project.

This article is supported by the California Black Health Journalism Project, a program created by California Black Media, that addresses the top health challenges African Americans in California face. It relies on the input of community and practitioners; an awareness of historical factors, social contexts and root causes; and a strong focus on solutions as determined by policymakers, advocates and patients.

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Activism

Oakland Post: Week of June 18 – 24, 2025

The printed Weekly Edition of the Oakland Post: Week of June 18 – 24, 2025

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Activism

Juneteenth: Celebrating Our History, Honoring Our Shared Spaces

It’s been empowering to watch Juneteenth blossom into a widely celebrated holiday, filled with vibrant outdoor events like cookouts, festivals, parades, and more. It’s inspiring to see the community embrace our history—showing up in droves to celebrate freedom, a freedom delayed for some enslaved Americans more than two years after the Emancipation Proclamation was signed.

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Wayne Wilson, Public Affairs Campaign Manager, Caltrans
Wayne Wilson, Public Affairs Campaign Manager, Caltrans

By Wayne Wilson, Public Affairs Campaign Manager, Caltrans

Juneteenth marks an important moment in our shared history—a time to reflect on the legacy of our ancestors who, even in the face of injustice, chose freedom, unity, and community over fear, anger, and hopelessness. We honor their resilience and the paths they paved so future generations can continue to walk with pride.

It’s been empowering to watch Juneteenth blossom into a widely celebrated holiday, filled with vibrant outdoor events like cookouts, festivals, parades, and more. It’s inspiring to see the community embrace our history—showing up in droves to celebrate freedom, a freedom delayed for some enslaved Americans more than two years after the Emancipation Proclamation was signed.

As we head into the weekend full of festivities and summer celebrations, I want to offer a friendly reminder about who is not invited to the cookout: litter.

At Clean California, we believe the places where we gather—parks, parade routes, street corners, and church lots—should reflect the pride and beauty of the people who fill them. Our mission is to restore and beautify public spaces, transforming areas impacted by trash and neglect into spaces that reflect the strength and spirit of the communities who use them.

Too often, after the music fades and the grills cool, our public spaces are left littered with trash. Just as our ancestors took pride in their communities, we honor their legacy when we clean up after ourselves, teach our children to do the same, and care for our shared spaces.

Small acts can inspire big change. Since 2021, Clean California and its partners have collected and removed over 2.9 million cubic yards of litter. We did this by partnering with local nonprofits and community organizations to organize grassroots cleanup events and beautification projects across California.

Now, we invite all California communities to continue the incredible momentum and take the pledge toward building a cleaner community through our Clean California Community Designation Program. This recognizes cities and neighborhoods committed to long-term cleanliness and civic pride.

This Juneteenth, let’s not only celebrate our history—but also contribute to its legacy. By picking up after ourselves and by leaving no litter behind after celebrations, we have an opportunity to honor our past and shape a cleaner, safer, more vibrant future.

Visit CleanCA.com to learn more about Clean California.

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Activism

OPINION: California’s Legislature Has the Wrong Prescription for the Affordability Crisis — Gov. Newsom’s Plan Hits the Mark

Last month, Gov. Newsom included measures in his budget that would encourage greater transparency, accountability, and affordability across the prescription drug supply chain. His plan would deliver real relief to struggling Californians. It would also help expose the hidden markups and practices by big drug companies that push the prices of prescription drugs higher and higher. The legislature should follow the Governor’s lead and embrace sensible, fair regulations that will not raise the cost of medications.

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Rev. Dr. Lawrence E. VanHook. Courtesy of Rev. Dr. Lawrence E. VanHook.
Rev. Dr. Lawrence E. VanHook. Courtesy of Rev. Dr. Lawrence E. VanHook.

By Rev. Dr. Lawrence E. VanHook

As a pastor and East Bay resident, I see firsthand how my community struggles with the rising cost of everyday living. A fellow pastor in Oakland recently told me he cuts his pills in half to make them last longer because of the crushing costs of drugs.

Meanwhile, community members are contending with skyrocketing grocery prices and a lack of affordable healthcare options, while businesses are being forced to close their doors.

Our community is hurting. Things have to change.

The most pressing issue that demands our leaders’ attention is rising healthcare costs, and particularly the rising cost of medications. Annual prescription drug costs in California have spiked by nearly 50% since 2018, from $9.1 billion to $13.6 billion.

Last month, Gov. Newsom included measures in his budget that would encourage greater transparency, accountability, and affordability across the prescription drug supply chain. His plan would deliver real relief to struggling Californians. It would also help expose the hidden markups and practices by big drug companies that push the prices of prescription drugs higher and higher. The legislature should follow the Governor’s lead and embrace sensible, fair regulations that will not raise the cost of medications.

Some lawmakers, however, have advanced legislation that would drive up healthcare costs and set communities like mine back further.

I’m particularly concerned with Senate Bill (SB) 41, sponsored by Sen. Scott Wiener (D-San Francisco), a carbon copy of a 2024 bill that I strongly opposed and Gov. Newsom rightly vetoed. This bill would impose significant healthcare costs on patients, small businesses, and working families, while allowing big drug companies to increase their profits.

SB 41 would impose a new $10.05 pharmacy fee for every prescription filled in California. This new fee, which would apply to millions of Californians, is roughly five times higher than the current average of $2.

For example, a Bay Area family with five monthly prescriptions would be forced to shoulder about $500 more in annual health costs. If a small business covers 25 employees, each with four prescription fills per month (the national average), that would add nearly $10,000 per year in health care costs.

This bill would also restrict how health plan sponsors — like employers, unions, state plans, Medicare, and Medicaid — partner with pharmacy benefit managers (PBMs) to negotiate against big drug companies and deliver the lowest possible costs for employees and members. By mandating a flat fee for pharmacy benefit services, this misguided legislation would undercut your health plan’s ability to drive down costs while handing more profits to pharmaceutical manufacturers.

This bill would also endanger patients by eliminating safety requirements for pharmacies that dispense complex and costly specialty medications. Additionally, it would restrict home delivery for prescriptions, a convenient and affordable service that many families rely on.

Instead of repeating the same tired plan laid out in the big pharma-backed playbook, lawmakers should embrace Newsom’s transparency-first approach and prioritize our communities.

Let’s urge our state legislators to reject policies like SB 41 that would make a difficult situation even worse for communities like ours.

About the Author

Rev. Dr. VanHook is the founder and pastor of The Community Church in Oakland and the founder of The Charis House, a re-entry facility for men recovering from alcohol and drug abuse.

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