A Deep Look At Care Taking

For over a year, I have been engaged on a daily basis with care taking for my wife who suffered a debilitating stroke in October of 2018. Understandably, I do not travel much and have significantly cut back on much of my online activity. Nevertheless, I have continued to write. My latest book, Be About Beauty (University of New Orleans Press – 2018), a collection of personal and cultural essays, will shortly be followed by two books: 1. Go To Jail, an anthology of writings on incarceration, which were produced and which I edited (with the significant assistance of George Lipsitz of the University of California Santa Barbara), as part of my work with Students At The Center, an independent high school writing program in New Orleans; and, 2. Cosmic Deputy, a life-long retrospective of published and previously unpublished poetry. Also forthcoming this new year is a major spoken word & music project, Catfish And Yellow Grits, co-produced with West Coast scholar and musician, Scot Brown, featuring my niece, Aminisha Ferdinand.

Here is “Taking Care,” the major essay from Be About Beauty.

Beaula “Nia” McCoy

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Humanity is not a solitary state; to be human means to be social.

In one sense or another, all of us are like babies: Dependent on others to take care of us but at the same time near totally self-absorbed with our own individuality. But the importance of, and even the psychological dominance of the individual personality notwithstanding, essentially our identity as a human being is initially created, continually shaped, and ultimately fulfilled by our relationships with others. In that regard, taking care of others is the highest expression of our humanity that any of us can achieve precisely because in caring for others we ultimately define who we are as a living organism interacting with our physical and social environment.

The beauty of being human is that, regardless of our condition, we are not alone. Or, as a number of African philosophies correctly assert: I am because we are.

Take care.

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TAKING CARE

There are literally millions of us. We are generally unacknowledged by our communities, our neighbors, fellow workers, social associates. We exist at each level of society. Everyone knows at least one of us; knows us intimately but paradoxically does not know us fully.

While many of those close to us are aware of some of what we go through, on a day-to-day level, the whole of who we are is seldom grasped, not to mention, rarely embraced.

In this nation of over 320 million people, literally millions of us are the primary care givers of family or very close friends.

We function at an intimate level of responsibility for the wellbeing of family members, friends, clients, and the indigent. Dealing with the “wellbeing” of others generally means that we are assisting someone who is sick or disabled; someone who cannot fully care for themselves; someone who needs support.

That much is easy to understand. However, I believe that our caregiving responsibilities extend beyond loved ones and clients, and, yes, beyond individuals who, for a variety of reasons, are unable to fully care for themselves. Caregiving concerns the wellbeing of our society as a whole and also includes the environmental wellbeing of the planet.

But getting to the larger general issues often begins with a deeper understanding of what it means to be a caregiver in a one-on-one case. In that regard, I am using my personal experiences to link the individual to the collective, the specific to the general.

Early in my adult life, I had three major encounters with caregiving. The first time, I was totally unaware.

I was newly married to Tayari kwa Salaam, nee Cecily St. Julien; we both were born and reared in New Orleans, albeit from distinctly different sections of the city, Tayari from the Seventh Ward and me from the Ninth Ward. We were living with my elderly, maternal grandmother below the Industrial Canal in the Lower Ninth Ward.

I don’t remember the specifics of how we came to be domiciled with my grandmother but I do remember that leaving the Parkchester Apartment complex in the Gentilly area where I had moved to upon returning home from the army and, subsequently, moving back CTC (cross the canal) to Lizardi Street in the Lower Ninth Ward was not my idea. Family members must have thought I was in a position to assist in taking care of Grandma Copelin and asked me to go live with her.

I didn’t fully understand the importance of my being there. My widowed grandmother, even in her elder years, was an independent woman. I can vividly recall, she had a lovely rose garden beside the house she was no longer spry enough to dote over by the time Tayari and I moved in; it didn’t occur to me tend to it. I had grown up cutting the grass in the side yard and clipping the hedges out front adjacent to the sidewalk, but beyond that I was never much good at domestic landscaping.

Moving as an adult into the house where I spent my early pre-teen years while my father was in the army was unavoidably crowded with formative childhood associations, such as playing under the wooden shotgun house that was raised almost three feet off the ground.

The front room of that home was where I first conducted writing workshops. I never asked my grandmother what she thought about those gatherings. I was oblivious to some of the opinions and feelings of an elder with whom I shared living quarters—me and Tayari mostly in the front half of the seven-room home and my grandmother mostly in one bedroom and the kitchen. None of us spent much time in the back room which had been my grandfather’s study when he was alive and active, preparing his Sunday sermons.

Our first child, Asante Salaam (asante = “thank you” and salaam = “peace”), was newly born when we moved. Theresa Copelin loved her great-granddaughter. Although sometimes when I reminisce about my formative childhood years, I remember Grandma holding Asante on her lap, yet I was unaware of the deep joy that babies and children bring to elders and how, in many ways not only physical but more importantly psychological, being around babies and young children gives elders something to hold onto and live for.

After a couple of years living with Grandma, I moved on, although not very far away—literally just around the corner from 1311 Lizardi Street to the 1300 block of Egania Street.

In the sixties and early seventies, a number of us were militantly intent on making fundamental social change. We went far beyond merely thinking about making change, far beyond the normal rebellion of breaking away from parents and living on our own. After moving out, Tayari and I engaged in a short-lived experiment of sharing a house with another couple. The living arrangement didn’t work out but we soldiered on in our serious pursuit of actualizing our belief in self-respect, self-defense, and self-determination, i.e. Black Power.

I was in Nicaragua when my grandmother died and was totally incommunicado. I didn’t know about her death until I returned home a couple of weeks after the funeral. I never had the opportunity to say goodbye nor did I find out the specifics. I just assumed she died of old age. Would she have lived longer if I had been there?

I was in my twenties. Fired up about participating in revolutionary struggle. My grandfather, Reverend Noah Copelin, had died a handful of years earlier in the spring of 1969. He was addressing a meeting called by the administration of Southern University in New Orleans who were attempting to quell our student uprising. Grandpa Copelin literally had a stroke while speaking about supporting his hot-headed grandson who was one of the leaders in the school takeover.

The last time I ever wore a coat and tie was to his funeral. My grandmother asked me to. I felt a responsibility to her. Yet, even then, I did not fully comprehend the extent of my human responsibility to care for others.

My own culpability for my grandfather’s death is an issue I never extensively focus on, probably because my grandmother never, in any way, ever made me feel that I was responsible for the death of her husband, Rev. Copelin. She easily could have resented me for causing his death but she never treated me and my family with anything other than love and devotion. I took her love for granted while never completely realizing that in her own way, she cared for my psychological wellbeing as much as, if not more than my meagre contributions to her homestead. In fact, by cheerfully accepting my limited assistance in our living arrangement, rather than resenting me, Theresa Copelin encouraged me to continue the struggle that her husband died supporting.

The second time I was deeply involved in caregiving was when my younger brother Kenneth suffered a serious asthma attack. At the time, he was newly married. He had followed me in living at my grandmother’s house. One night, desperately seeking my help, his wife Willetta frantically called, saying that Kenneth had fallen out. When I got there, Kenneth was on the floor, wheezing heavily and convulsing. He suffered these attacks as a child so I was not shocked; plus, I had been in the military and was trained to respond to emergencies. Within two or three minutes I had used a spoon to keep Kenneth from swallowing his tongue and then found his medication.

For me, while it was a serious situation, taking care of my brother was almost routine. However, the next time I tangled with death, the experience emotionally jolted me.

This third occasion of caretaking occurred well over a decade after living on Egania Street. By then I had literally quit my first marriage. This was one of the three pivotal movements of my early adult life. Relocating from Parkchester back into the Lower Ninth Ward on Lizardi Street with my grandmother was the first move. Then around the corner on Egania Sreet with Kwesi and Femi, and concluding with the move less than a mile away to Tennessee Street, where ultimately five children were reared. And when Tayari and I broke up, I briefly moved in with my father on St. Maurice Avenue, in a far corner of Lower Nine.

Big Val welcomed me home. From birth until after my father died, except for the brief 15 or 16-month period in Parkchester, I lived in the Lower Ninth Ward. Both my brothers also lived cross the canal in the Lower Nine as they were starting their families. The younger of my two brothers is a cardiologist. Some period after I’d moved back to St. Maurice, Keith had to go out of town, I believe it was to San Francisco, and had left me with specific instructions of what to do if my father had any health problems. Early Friday morning, Daddy complained that he had not slept well the night before. I took him to the doctor as Keith had recommended.

Dr. Wooten did not find anything seriously wrong but admitted Daddy to a hospital as a precaution. I visited later that afternoon accompanied by Debra Campbell, a woman I was dating at the time. Daddy said he was feeling ok but would like to get a good long sleep, so tell anybody who wanted to come see him, to do so on Saturday. I recall that while Daddy and I were talking, Debra spontaneously reached out and rubbed his feet. She was meeting him for the first time. I never would have done that.

Daddy fell into a coma later that night and died two days later on a Sunday morning. He had held on until Keith could get back in town. As the doctor took daddy off life support, Keith, Kenneth, and I were standing beside my father while he expired. No one could explain what had happened, what was the cause of his demise.

I had never known my father to be sick, in fact never even saw him, as the popular saying goes, “under the weather.” Big Val was robust, active and full of energy. His fatal illness was a mystery. One day he’s ok, the next he’s in a coma, and less than 48 hours later he’s dead. What the hell happened? We’ve never received any answers, not even plausible guesses.

As it sometimes does, death came both swiftly and without warning. Caught me totally unprepared. My mother had died several years earlier after a long bout with cancer. We had been prepped to deal with her home-going, indeed, she involved each of her sons in coping with her transition by talking with us when we drove her across town for medical treatments. I had more or less calmly dealt with the loss of my mother but was blind-sided by my father’s untimely departure.

We never knew my Daddy’s mother who had died when he was a child residing down around Donaldsonville, Louisiana. Even though he briefly lived next door to us, I never really knew my daddy’s father who was my namesake. Vallery Ferdinand, Sr. was my daddy’s father, and I was born Vallery Ferdinand III. Grandpa Ferdinand died when Hurricane Betsy flooded our neighborhood in September of 1965 while I was in the army.

Well before reaching forty, I found myself as the oldest living member of my immediate family, most of them had died during my physical absence, and none of them had required any major care on my part. I really had no clue concerning what it took to be a day-to-day caregiver.

The loss of family and friends reminds us that mortality, paradoxically, is a major part of life. Many years later when I was in my sixties, while helping to care for close friends, death once again caught up with me in a major way. Of course, there were other occasions when I had to confront death in the intervening years but none of those ordinary instances really shook me as did two particular close friends leaving me behind—Doug Redd and Harold Battiste.

Born in New Orleans but reared in Baton Rouge, Douglas Redd was a visual artist who returned to New Orleans for college and became a fixture on the cultural scene. He and I connected and over time became like brothers. Right after Katrina hit, I had made a major video documentary of the two of us opining about New Orleans culture.

When cancer struck him, I responded. For over a year, I devoted nearly every night, from around seven or eight in the evening until after midnight, to sitting with Doug. We’d talk, watch television. During the last year of his life, illness rendered Doug virtually incapacitated; nevertheless, I mostly remember him jovially laughing and smiling as we bantered about the TV series “24” or whatever else happened to be on that night.

Mostly that was the way each night went, except the time Doug suddenly convulsed and I held him, first shaking him gently and then lowering him to a prone position. Carol Bebelle, who was Doug’s business partner with whom he shared an apartment at Ashé Cultural Center, the organization the two of them founded, called 911. I ran downstairs to the parking lot to make sure the EMTs would be able to arrive without any delay or confusion about how to access Doug, who was on the third floor at the back of the building next to the rear parking lot. The front of the building facing the street offered no way upstairs and no access to the elevator.

Fortunately, help arrived quickly and Doug was stabilized. As significant as that occasion was, another night was more memorable. It was a cliché: a dark and stormy night. Carol was away at a meeting. I asked Doug if he wanted to go outside. He looked at me wide-eyed. I assured him I was not joking.

“But don’t tell Carol,” I conspiratorially whispered.

Downstairs there was an overhang by the rear entrance facing away from the side parking lot. Lightning and heavy rain. I pushed Doug’s wheelchair as far out under the overhang as I could without the rain plummeting down on us. And we silently enjoyed the exhilarating ambience of the New Orleans night shower. There was an electric charge in the air, plus a definite atmospheric odor, as well as a perceptible drop in the temperature. The sights and sounds of the thunderstorm were simultaneously dangerous and energizing. At such times, most people seek shelter, but we were two fools reveling in the experience of exposing ourselves to the elements.

Sometime later, I told Carol about being out in the storm with Doug. Although he and I spent numerous nights together, I was not present when Doug passed away early, early one morning in July 2007, one month shy of the second anniversary of Katrina.

Both Doug and I were born in 1947, he in December and I in March. Doug was my peer. Harold Battiste, conversely, was more of a father figure.

I was working as the executive director of the New Orleans Jazz and Heritage Foundation, the parent organization of the popular, internationally-renowned New Orleans Jazzfest. I knew of Harold Battiste but had never met him. When he came in town for one of the annual Jazzfest activities, I invited him over for dinner. By then I was living in the Midcity area of New Orleans. Harold had produced New Orleans Jazz Heritage, a multiple LP set of fifties and sixties era jazz music that greatly inspired me. Following up on Harold’s example, I would go on to produce The New New Orleans Music, a three-volume set of recordings featuring six different groups, one on each side of the collection.

As music producers and cultural activists Harold and I were two amigos and stayed in touch. Within a year of our dinner, Harold decided to return home to New Orleans after living in Los Angeles for many years that included working with Sam Cooke and serving as the musical director for Sonny and Cher. We started hanging out, usually around dinner at Picadilly’s but also at other eateries.

One place we sometimes chose was a Thai restaurant located in the River Bend area of New Orleans. A scary incident happened there: Harold fell while negotiating the narrow spaces between tables. Although he insisted he was ok afterwards, I was alarmed. His fall had been hard. His health was failing. Within a year or so, Harold was homebound. What he resented most was not being able to drive. Although dealing with Harold’s physical condition did not bother me, nor fellow musician/guardian angel Jesse McBride, nor Sophia, a distant cousin who became Harold’s primary caretaker, Harold was deeply resentful of the deterioration of his strength and mobility.

What he resented most was not being able to drive. Our trio of caregivers was there for him, but eventually we started arguing with Harold about us denying him the chance to drive himself. One time the disagreement was so sharp, I challenged Harold, telling him I would give him the keys to his car if he could come and get them. I went outside his apartment, walked toward the end of the long hallway and, holding up the car keys, I patiently waited for him to come to me. It was a cruel gesture; I knew he was unable to walk over sixty feet unassisted.

I knew driving had become to dangerous. In the year prior to that confrontation, Harold had had both a minor and a more serious automobile accident. I was afraid the next collision would be fatal. Emotionally, tough love is sometimes harder on the person giving it than on the person receiving it.

Eventually, our hanging out was curtailed altogether as Harold grew more sick and old age prevented him from doing anything alone. Sometimes, when I would visit, I would find Harold sitting by himself on his bed, looking out over the back-parking lot of his building, which ironically abutted a cemetery. Usually we could talk for hours, but now he would silently sit; the only sounds was our deep breathing, as he was mostly unresponsive to me prodding him to engage in conversation.

Sophia had moved in to care for him 24-7. Harold died at 83 in June of 2015. I had known him for over thirty years and when he left us, I was deeply affected. Just as had happened earlier when Doug passed, another part of me was now, irretrievably missing.

When you lose decades-long, close friendships, whether or not you verbally acknowledge your hurt, you do not live the rest of your life unchanged—especially as you grow old into what our people euphemistically call “the sunset” years.

I am not alone in dealing with the existential challenges of caregiving. I decided to reach out to a friend from back in the day, Sylvia Hill. The phone rang and rang, until eventually the answering machine picked up: Once. Twice. Thrice. I called a couple of people I knew who lived in D.C., where Sylvia was, and whom I thought might know her. Still was unable to reach her. A few weeks after giving up, I tried again on a whim, a hope.

She answered and informed me she had been out of town. I told her why I called in the first place: I was in the throes of dealing with caregiving with my wife and Sylvia’s example years before had profoundly affected me.

Long story, short: after a marriage and a separation, Sylvia had taken her former husband back in over a decade later when he went blind. When we finally talked, Sylvia told me James had died over a year earlier on January 8, 2017.

We conversed as though we had seen each other last week. Actually, it had been years since we talked but ever since we first spoke on the phone back in 1974 about participating in the Sixth Pan African Conference, popularly known as 6PAC, for which Sylvia was a major coordinator, she and I were close even though we never even lived in the same city.

In the Howard University emergency room, sickle cell wracking his body and sapping his strength, James Hill had remained resolute. Sylvia recalls his last lucid words: “Power to the people. Power to Black people. Keep hope alive.” A janitor who happened to be nearby said, “Did I really hear him say that?”

Our friendship grew out of political work. I had first come to know Sylvia when she was working as staff for 6-PAC in Tanzania, following that with ongoing Anti-Apartheid work in the eighties, and eventually assisting with Nelson Mandela’s tour of the United States following his 1990 release from prison.

Nearly twenty years before Mandela’s world tour, I had been one of the national organizers for FESTAC 1977, the Second World Black and African Festival of Arts and Culture, held in Lagos, Nigeria, and underwritten by Nigeria’s oil riches. Coming up out of New Orleans, I was representing the deep south region of the United States. FESTAC held monthly board meetings in D.C. and I would make an effort to call and, if possible, visit with Sylvia whenever I was in town.

Sylvia and I knew a number of people in common including Ed Brown, who was Rap Brown’s older brother and who was a former organizer with SNCC (Student Nonviolent Coordinating Committee), working as a field secretary in Mississippi. In 2002 Jamil Abdullah al-Amin (bka H. Rap Brown) was convicted of and incarcerated for the death of a policeman. Rap had converted to Islam, as would Ed during the last years of his life. I had gotten to personally know both Jamil and Ed, when they lived in Atlanta.

Ed Brown and I would journey back and forth visiting with each other. In later years when Ed became terminally ill, my friend Lionel McIntyre and I set off on the six-and-a-half-hour journey ‘fore day in the morning to sit with Ed. We spent about four hours reminiscing with Ed and his wife Valinda. Afterwards, we jumped into our vehicle and drove back to New Orleans.

Some weeks later as a pain in my right leg worsened, a doctor asked me had I recently taken a long trip. I said yes. He advised me that long back and forth drive probably contributed to a serious blot clot condition for which I was hospitalized for a couple of days. If I had not received treatment, the blood clot could have been fatal.

Years later, when Sylvia told me about James’ death, I thought about my own illness.

Originally from Jacksonville, Florida, Sylvia had been working with the Institute of African Education, a program supported by Macalister College. The program was based in the small but vibrant Black community of St. Paul, Minnesota. I had spent two trimesters at Carleton College in Northfield, Minnesota, about 50 miles from St. Paul. I didn’t know many Black folk who were familiar with that part of the country.

Sylvia was adept at patiently talking with people in a non-threatening but forceful way. Her goal was to get people active in education, oppositional politics, and community-based health pursuits, all three of which were a necessary foundation for ongoing political work. Just as legendary Chinese revolutionary Mao Tse Tung advised: “a dull-witted army cannot defeat the enemy.” Sylvia knew we had to both study and struggle. Of course, the popular culture of the sixties and seventies actively encouraged us to be, in the famous words of James Brown, “Black and Proud,” and to “get up and get involved.”

Ninety percent of movement work happens away from the spotlight and microphones, takes place in the workplaces, churches and temples, and home spaces of working class people. While the churches were important organizing focal points, during the seventies, activists at community and cultural centers offered a more radical interpretation of what was to be done. Additionally, in these spaces one could meet and interact with regional, national and international figures who were culturally and politically active. Overall, independent organizing was hard, inching along work, that required daily commitments sustained over extensive periods of time, often for only incremental gains.

On the one hand, during this period, as a result of social ferment throughout our city, this nation, and the world, there was a rise in the number of Black elected and appointed officials; but on the other hand, there was an overwhelming and profound need for economic and health care programs.

From 1973 to 1977, I was the director of the Lower Ninth Ward Neighborhood Health Center. At that time, I did not fully grasp the revolutionary potential of such programs that fulfilled fundamental concerns of our underserved communities. Indeed, although I had been selected to head the newly opened health center precisely because I had a history of community activism stretching back years doing door-to-door civil rights work, my career choices were elsewhere. I was an able administrator but was far more interested in developing myself as an activist and writer.

When I shared with Sylvia my current struggles with caregiving for my wife, Sylvia gave me an insight I can never forget. Yes, caregiving was hard but caregiving also was a means of finding and expressing the deepest part of our humanity.

With neither embarrassment nor restraint she and I are able to talk as only long-time friends can, particularly friends who have shared both political and caregiving struggles.

Politics, especially at the oppositional level, is not only emotionally consuming, the struggle is also both a barrier and a bond. People outside activist circles seldom grasp the depth of experiences held among those who confront dangers, make sharp personal sacrifices, and, most of all, share all the ups and downs, all the twists and turns, and, yes, all the inevitable reverses and contradictions that are inherent to protracted struggle. From arrests by the state and confrontations with both the police as well as with para-military civilian forces, to international adventures and connections with people and places far from home, the politics of struggle more often than not sets one apart from those family, friends and associates who are not active on the front lines.

This voluntary grappling with the powers that be informs and shapes one’s individuality in ways that outsiders not only generally don’t and can’t understand. More importantly, because being in opposition to the powers that be is dangerous and all too often illegal, the details and results of resistance usually remain hidden from others, no matter how close the others may be or, over time, may become. To engage in anti-establishment struggles inevitably means keeping secrets, and keeping secrets alienates you from others.

Paradoxically, caregiving has the opposite effect of pushing the giver and receiver closer together even if they have not otherwise shared activities or viewpoints, which is often the case when one person has been politically active and the other has not.

Moreover, caregiving brings us males closer to another person than does any romance, social/political activity, or even any kinship relationship. Caregiving makes clear that living is no easy task and requires constant vigilance and work. Ultimately caregiving is a nurturing process that is too often preconceived as outside of the realm of manly responsibilities.

Caregiving inevitably humanizes men far, far beyond what is normally expected or actualized by males. In a sense, caregiving enables me as a male to emotionally, as well as intellectually, identify with a whole world of experiences—a world that, in this society, women know intimately, and which we men too often discount or ignore. We men assume some woman—be she family member or paid professional—will do the job.

Most of us not only think of caregiving as “women’s work,” worse than feminizing a task that more of us men ought to willfully undertake, caregiving in many, if not most, cases is unpaid labor. This is significant. How significant? Try paying for round the clock, 24/7 professional (meaning it is a job) caregiving. Such professional care is far from cheap, indeed, professional care givers are expensive.

The political economy of caregiving is massive. But beyond the labor, the monetary costs, and the time, looms the larger issue: compassion and love for one another. Not only is it true that men don’t want to talk about caregiving, and really don’t want to be burdened with the constant effort required of care givers, the deeper truth is that because of our socialization we are too often unable to do so even when we want to.

There is a reason that I could call Sylvia after us not seeing each other for over a decade, and we could intimately speak about our separate lives. We didn’t have to share day-to-day mundanities; we have shared pivotal and essential struggles: we both were spousal care givers. I had now entered a realm of responsibility that previously I knew of but, for which, I did not have primary and full responsibility.

Just Nia and I live in our home. I had been inducted by unforeseen circumstances into the golden circle of caregiving. I know there are many other men in a similar situation but I have never before at length and in-depth talked about or written about caregiving.

The details may change but the essential challenges remain the same. In 1997 I re-married. In the fall of 2017 when my wife, Nia (Beaula R. McCoy, who was also married for a second time), suffered a stroke, I found myself again in a spousal caregiving role. I had forgotten about the first time. Back in 1985 Tayari had the first of three brain operations over a roughly thirty-some-year period. There was a slow recovery following the first operation.

Although extremely serious, I don’t recall Tayari’s recuperation being as strenuous as the daily struggles to care for Nia, who is barely mobile with a walker and spends most of her time in a wheelchair.

Nia and I are now in our seventies; in the 1980s both Tayari and I were in our thirties. We were overall, much more-healthy, much stronger, and had much more energy, all of which greatly contributed to the relative ease that Tayari had in responding to the first brain surgery compared to Nia coping with the after effects of her stroke.

While Tayari’s recovery was, as the saying goes, no “walk in the park”; afterwards, Tayari could take care of herself. Even though she had to be careful about what otherwise would be an ordinary bump to the head, she was not physically impaired. Nia completely lost her peripheral vision on her left side and also suffered an increasing, although minor, deterioration of her sight in general.

Nia had to give up driving, which required a major psychological adjustment for someone who was used to being independently mobile. Thinking back to Harold’s anger at not being able to drive, I could easily empathize with how hobbled Nia feels. It’s almost like being permanently grounded. Of course, when faced with ongoing major health issues, not being able to drive doesn’t initially register as a great challenge, but it doesn’t take long before one feels like a newly caged bird.

Tayari could walk, talk, and, over time, carry on as usual. Although she was not physically restricted there were disconcerting attitudinal changes. At that time, the women in our organization wore either lapas (long, wrap-around skirts) or trousers. Not long after the operation, Tayari announced that she wanted to wear shorts and walk around the block.

Although I didn’t particularly like the idea, if I truly believed in self-determination, I knew that I had no right or prerogative to control what Tayari did with her body, even if I thought her decision was a negative result of her operation.

Tayari and I didn’t argue about her choice. She went for her walk and returned home shortly.

Tayari’s personal decisions were never an issue for me. There is a critical saying from the women’s movement of the late sixties, which, incidentally, I think may have grown out of the civil rights movement. That saying is an essential credo of self-determination: “the personal is political”. Moreover, I believe that slogan really took off as an outgrowth of the Black Power movement. Indeed, wasn’t it obvious, if the lowest strata of society could insist on its rights to self-determination, to power, then why not women, whom patriarchy oppressed and exploited across the board at every level and in as many ways as possible? For example, what is a beauty contest but an appeal to what men consider beautiful? And, yes, President Trump and the beauty contests that he “owned” are a prime example!

The reason that the women’s movement was so hated is precisely because empowering women is a direct challenge to patriarchy, a system that implicitly and explicitly is based on the male control of the female: body, mind and soul.

People who knew me in the seventies, on some rare occasions ask: why did you and Tayari break up? Why did I end our marriage? And, it clearly had been my decision. For a long time, I could never really articulate why, however, as I write this essay, a pivotal event from over thirty years ago strikes me in ways I never fully understood at the time. The breakup happened in conjunction with what I thought of at the time as the total destruction of a world I had worked hard to construct.

In reflecting on the situation, I’ve come to realize that ending our marriage happened in conjunction with me leaving our organization, Ahidiana. To be more precise, I made a decision to leave the organization because I believed that we were no longer primarily about making social change.

Of course, our organizational issues were far more complex than my personal opinion. For over a decade all but one or two of Ahidiana members were either reared in or moved into the Lower Ninth Ward near our school building, which we owned collectively. But over time, neighborhood safety deteriorated. My youngest brother Keith and his wife Daphne had a burglary and they decided to move their family away from the area, as it was becoming more and more dangerous. Tayari’s brother, Mtumishi, and his wife Shawishi also decided to move out to New Orleans East. Keith was a doctor, Mtumishi was a lawyer. As they were progressing in their professions, they were also moving into a different social strata.

I could sense changing attitudes resulting from changing social circumstances. And just as when Tayari decided to wear shorts, I did not believe I had the right to over-rule the decisions of others. My thinking in regard to our organization was that it would be best to officially disband rather than to slowly wither away as members moved far from the Lower Nine and further from anti-establishment activism.

On the other hand, I had a major blind spot in terms of child-rearing. I did not fully understand how important it was to maintain our school whose students ranged from pre-K to fourth grade.

Part of my blind spot was that I didn’t teach in our school. I drove the van doing pickups in the morning or drop offs in the afternoon. I pulled my clean-up shifts at the school and at our small, one-room bookstore. I participated in the lesson planning and the preparation of booklets we used for instruction but I was not a hands-on care taker for the watoto (children).

At Ahidiana the children referred to the adults as mama (mother) and baba (father). Regardless of what I thought, the reality was that I was ready to abandon my parental duties for the children who did not live under the Salaam roof. Of course, any of the organization children who was visiting with us was cared for. They often slept over and didn’t even have to ask permission. The Ahidiana children grew up collectively.

The breakup of Ahidiana was a major struggle for me but I was prepared to let it go. I didn’t fully understand that care givers shouldn’t just walk away. The politics of struggle are far deeper than most of us realize as we make individual life choices; certainly, far deeper than I understood at that time.

I was convinced that rather than gradually disintegrate, Ahidiana should come to a planned halt, but I was not thinking about what that meant for all the children at our school, partially because, except for our youngest, all my biological children were already moving on to public school.

Moreover, there was a deeper truth: Ahidiana had been founded as a result of a painful split. Initially, we were Dokpwe Work/Study Center, founded by my brother Kenneth and Tayari. Roughly half of us broke off from Dokpwe to start Ahidiana because we were pushing for a political organization that also operated a school rather than a staff that functioned solely as a school.

Even though it meant splitting with my brother, I was adamant that the fissure had reached a non-negotiable political position. Dokpwe kept the stove, Ahidiana took the refrigerator. It was a classic separation, emblematic of many, many splits happening in Black America of that period. Although both camps considered themselves Black nationalists, the severity of the separation was akin to the nationalist/Marxist breakdowns that were rife among anti-establishment, political forces in the eighties.

Those of us of the Ahidiana persuasion were particularly militant about participating in community organizing and confronting civil authority. For example, we were actively engaged in addressing the issue of police brutality and were especially motivated after three people were gunned down during police raids in the Algiers area of New Orleans on the west bank side of the Mississippi River in November 1980.

A police officer, Gregory Neupert, was shot and killed in Algiers by an unknown assailant. In attempts to hunt down the killer, the cops enacted repressive, Draconian measures (that included torture, which was later documented in court trials). The word on the street was that Nuepert was a dirty copy involved in drug dealing. In one particularly horrific case, three people were killed by police following the death of Neupert. One of the victims was a 26-year-old woman, Sherry Singleton, whom one neighbor reported hearing beg for her life. Two young men, James Billy and Reginald Miles, who was Singleton’s boyfriend, were also killed in gun fights with the police that night. A few days earlier Raymond Ferdinand had been shot by police.

Some of us felt we had to do something, take some action. Mayor Dutch Morial was the city’s first Black mayor. We decided to sit-in the mayor’s office under the slogan of “Blow The Whistle On Dutch,” whom we held ultimately responsible. The take-over was very controversial—and, as the cliché goes, “that’s putting it mildly”.

Dutch was not only a “first negro”, he was a proud man. What we did was a major embarrassment not just for the Morial administration but for him personally. Many years earlier, when I was in high school and an active member of the NAACP Youth Council, Dutch headed the adult NAACP chapter. Back then we had clashed over a boycott of Canal Street, which was the main business district. After over a year of the Youth Council picketing and organizing the boycott, the merchants decided to negotiate but only if the pickets were removed. The adult chapter, which, except for two or three members, had not regularly walked the picket line, were ready to meet the merchant’s terms. They gave us an ultimatum: either agree to the terms or be expelled from the NAACP.

Nobody had to tell me twice. I resigned. Years later, following the Algiers murders, Dutch and I were again at loggerheads. Although I did not view the situation in personal terms, there was no denying we had history.

This classic conflict was not actually between two forces contending for the same objective. No. On the one had there was the view that we should push for full participation in the established society. On the other hand, there was the view that we should struggle for an independent alternative, a struggle that included forceful opposition to establishment authority. What to do when the former rebels, i.e. people such as Dutch who had a long history of participating in efforts to improve the conditions of our community, were in conflict with the emerging youth, i.e. those whom we represented and who were staunch opposition elements.

Without any warning, we launched a frontal assault on City Hall. We occupied the mayor’s office from Thursday until Saturday afternoon when we decamped, striding out of the building with our fists proudly upraised.

Being an activist is among the higher levels of caring because it moves beyond individual benefit and instead is focused on collective issues. At a philosophical level, I cannot separate caring for individuals from social activism. Living a good and relevant life required principled activity on both a personal and a social plane. Not surprisingly, I often publicly focused on the larger social issues even as I privately paid attention to personal issues.

I believed that there are three levels of power: the political, the economic, and the military. Police brutality made shockingly clear to us not only that we had no military power but also that although the police were nominally controlled by the mayor, de facto, the truth was the police still viewed some of us as runaway slaves. In fact, worse than runaways, a number of us were actually viewed as slaves in revolt. We had to be put down.

Some of us had to be shot as examples in order to keep the bulk of us in compliance with the powers that be. Although his power as the titular head of the city was not negligible, Dutch Morial was not essentially in charge of the city, and certainly was not in charge of the economy of the city.

New Orleans is one of the major port cities of the United States; always in the top ten, sometimes as high as one of the top five. But there was a change in both the national and international shipping of goods that happened a number of years ago: cargo was placed in containers that could be mechanically loaded directly from the ship onto rail or trucks. A large gang of longshoremen was no longer needed for manual labor.

The Black longshoremen had earned significant income (enough to support businesses and pay for college education). They, along with public school teachers, had been the major economic force in the Black community. Longshoremen and public school teachers were both unionized. Technology wiped out the longshoremen and charters attacked the teacher’s union, thereby effectively limiting if not totally neutering major economic levers that were under Black control in New Orleans. Although this development took over thirty years to come to full fruition, nevertheless, the destruction of these two forces was a major blow.

Longshoremen and teachers were integral to our collective wellbeing, especially when you consider issues around health care. Caregiving costs money. Adequate health insurance was a major benefit of both professions (and yes being a longshoreman was a profession). Buying medications and paying for direct and indirect medical services can be expensive: from clinic visits to obtaining sturdy wheelchairs and regular purchases of medication. In most cases, while we are young and relatively healthy, we don’t consider these issues; but, oh, as we age.

Regardless, as significant as providing compassionate caregiving is, far too many of us never get to be elders in wheelchairs and on long term medication. Why? Well, because we instead become early victims of poor health care, and also tragic victims of police brutality. One of my brothers is a physician. Another of my two brothers is a businessman. I was the militant.

By taking a public and militant position on police brutality I knew that I was placing a target on myself. We began receiving threatening phone calls at home and after a drive-by with people shouting racial epithets one night, I began sleeping with a loaded thirty-caliber, semi-automatic carbine rifle next to the futon.

Some older friends and associates counseled that it might be prudent if we slowed down a bit; after all, who would take care of my wife and five children if something might happen to me. Although I never surrendered to the social pressure to stop anti-police brutality organizing, I was sincerely concerned about my personal responsibility as the prime care taker for my family versus my commitment to a leading role in caring about our larger community by militantly confronting police brutality and organizing around other issues germane to our collective wellbeing.

10.

During the eighties and early nineties, I was doing a lot of travel internationally, mainly to the Caribbean, but also to England, France, and Germany in Europe; Brazil and Surinam in South America, and of course to Africa. I helped organize the first Pan Jazz Festival in Trinidad, and before that took jazz combos and brass bands to a number of the islands. I was also a participant in the 1994 PANAFEST in Ghana, West Africa.

At home I was a fixture on radio station WWOZ, the New Orleans music station. One of my most popular programs was the Thursday night Kitchen Sink, whose eclectic playlist was just what the name implied. I once garnered a month-long ban for a show I did featuring Malcolm X speeches mixed with music from Archie Shepp. On another occasion, I offended some listeners with my “MJ Special”. We played Mahalia Jackson the first hour and Michael Jackson the second hour. I was far from programming just historic New Orleans R&B, popular funk, progressive jazz, show tune standards, and romantic ballads.

The transfer of the broadcast license from the Nora Blatch Educational Foundation to the Friends of WWOZ Inc., supported by the New Orleans Jazz & Heritage Foundation, was my major achievement during my tenure as the Jazz & Heritage executive director. ‘OZ was founded by brothers Walter and Jerry Brock, who had been active in community radio in Texas. It literally took them over four years of organizing and gathering support from the wild and diverse New Orleans music community to secure the last broadcasting license available in the greater New Orleans area. The station began broadcasting on December 4, 1980.

I knew that financial stability was going to be a major issue. The technical side of broadcasting was covered by engineer Ken Devine with whom I struck up a long-term alliance. Walter and Jerry raised early funding selling memberships while at the same time coordinating the programming talent. Initially, the programs were pre-recorded for broadcast. After shifting to a mix of pre-recorded and live shows, the station subsequently went predominantly live, 24-hours a day. The focus on the music with volunteer DJs and minimally paid staff notwithstanding, I knew that the funding required for daily operation and for equipment purchases and upkeep was the critical issue.

During my tenure as executive director, I had managed the considerable funds of the Foundation and became adept at identifying six-month CDs (certificate of deposit) at various financial institutions to make money off of earned interest. Once I even drove twenty-some miles across the lake to Slidell, Louisiana to garner a high interest 100,000 dollar CD. I knew that if I could persuade the Foundation board to actively support WWOZ that would solidify the financial status of the station. Orchestrating the transfer was far from easy and fraught with numerous obstacles, misunderstandings, and conflicts.

The first WWOZ studio was a small room above the famous Tipitina’s nightclub. The second location was the Kitchen Building in Armstrong Park. The current home is an upstairs location on St. Peter Street in the historic French Quarter. At one point in the early years following the move to Armstrong Park, the entire staff and many of the programmers went out on strike because of management issues. I joined the strike. Eventually those issues were ironed out and today the station thrives in its French Quarter offices overlooking the Mississippi River.

Coordinating the diverse partners who were needed to get the title transferred and to establish the sound financial footing necessary to keep the station afloat was a tricky proposition, but eventually it was accomplished. Via the internet, WWOZ is now heard worldwide. Very few of the thousands of members and listeners know any of the details about the founding and early struggles of WWOZ. Ultimately, just as I had assumed, despite inevitable ups and downs, as well as internal conflicts, the Jazz and Heritage Foundation proved to be a reliable caretaker for community radio.

Although some may not see or understand the nexus of community work to individually caring for a spouse, a family member, a close friend, or other individual in need; to me, whether for the collective or the individual, my caretaking in either case is philosophically an essential aspect of what I believe is my responsibility to kin and kind. While not denying the differences, I believe community/individual are two sides of the same coin of my essential humanity expressed in terms of how I live with and relate to others.

11.

To accomplish my tasks as a caretaker with Nia, I take on many of the responsibilities usually assigned to the “housewife”. Beyond culinary duties and cleanup afterwards, there is the daily clothing that has to be washed, plus the significant toileting assistance and waste disposal that requires constant maintenance.

One day Nia told me that she didn’t want our home to smell of “urine and feces” as did the houses of some others who were infirmed. She didn’t have to tell me twice. Although emotionally taxing, none of the necessary hygiene chores are physically strenuous. The biggest requirement is that you have to deal with the issues quickly and efficiently, especially putting out the trash.

Red Plastic Bag (Stedson Wilshire) is an entertainer from Barbados who combines reggae and soca, and has won national contests in his home country. What a name, I thought, when I first heard the light-brown-skinned performer at Barbados’ annual “Crop Over” festivities. Today, taking care of my wife, I use beaucoup plastic bags on a daily basis mainly to line trashcans and to contain waste but, also, to dispose of the plastic-lined padding that is used daily on easy chairs and bedding.

Although the inexpensive plastic bags that the grocery stores and supermarkets now offer, in place of the heavy paper bags formerly used, are inexpensive and convenient, I also know that plastic is non-biodegradable. Plastic bags and plastic packaging are a major pollutant in oceans worldwide, which are too often where hundreds of thousands of these cheap containers end up. Some countries are beginning to actively curtail the routine use of plastic bags, especially for daily use at home. Nevertheless, plastic bags are incredibly convenient even though for the long-term, disposal of medical and human waste, incineration is ultimately required for that. Ultimately, the environmental cost of the proliferation of plastic bags is high. Plastic bags are both a major convenience and at the same time a major environmental hazard.

There is a critical upside and critical downside to much of our modern 21^stcentury lifestyles. The widely-accepted general use of plastic bags embodies both the positive and negative.

Plastic bags offer us immediate short-term solutions but create expensive, long-term problems. Once again, our society is faced with a major question given the conditions that have to be dealt with and the options available to us: “what is to be done?” Dealing with Nia’s condition directly presents all kinds of questions for me that I had not previously considered, not to mention, for which I have not yet found suitable answers. I believe stewardship of self, others and the environment is one of our most critical human responsibilities.

12.

Because my wife is only partially mobile, frequent clinic appointments, doctor checkups, and therapy sessions that happen three or more times a week require hours to prepare for and to complete. As a friend told me in serious jest: growing old is not for wimps!

Imagine: it takes us three or four minutes to negotiate the series of four steps up and down our front porch. There is a whole technique to climbing up, and to climbing down—lead with the good foot, which is Nia’s left foot because although her left peripheral vision was gone, the right side of her body was weakened. So, she faces the railing and, standing sideways, painfully steps down or up leading with her left foot. Of course, I am there supporting her but there is also a major issue of encouraging her to do as much on her own as she can.

Indeed, she can grow stronger by pushing herself to do as much as possible on her own. Haltingly moving with a walker is painfully slow but I patiently wait, often next to and slightly behind her just in case she needs support.

Ordinary tasks we do without much thinking about it, such as unscrewing the cap on a bottle of water, is extremely difficult for someone who has suffered a stroke. Picking up the Chapstick that fell on the floor—oh, the floor is so far away.

Your worldview is different when you are mostly confined to a wheelchair. You can’t just go out on the porch and check the mailbox. Indeed, you can’t reach the mailbox. Of course, you could push the walker out on the porch, maneuver the wheelchair onto the porch, brace the walker against the side of the house, pull yourself up, and hobble over to the mailbox. Nothing there but ad brochures and solicitations from insurance companies.

You get tired of watching network television and cable.

The biggest thrill of the day isn’t eating, it’s bathing. Sitting on the shower bench that fits into the tub with a set of legs inside the tub and a set of legs outside the tub. The bench is designed with holes in the seat so the water flows through rather than splashes on the floor. To just sit there and take a long hot—but not too hot—shower is totally refreshing. And then being helped into freshly washed, clean clothing is a wonderful feeling.

Yes, you wear the pull-ups that are a combination of drawers and diaper. Thankfully, your caretaker is on the case whenever you say you need to go to the bathroom—oh, why be coy, you need to use the toilet, and you need assistance once you are finished emptying your bowels. You change your disposable underwear, get dressed again, and push yourself to navigate with the walker. The long hallway takes time and you’re breathing hard when you finally get to the den, but you know walking is therapeutic.

Finally, you sit in the wheelchair and ask for a bottle of chilled water.

And then there is a mischievous moment. Nia requests her favorite cookie: “Do we have any Lorna Doones?”

Being the sole caretaker for what the old folks commonly called “the sick and shut-in” is not a lightweight job. You get no days off and it requires rigorous and sustained follow through on all necessary tasks. Who knew there was so much involved in caregiving? Until we are thrust into caregiving jobs, most of us are totally clueless.

For me, the hardest aspect of caregiving is the emotional impact on both Nia and myself. Yes, I’m sometimes annoyed when I am working at the computer and Nia calls out to me. And I know that Nia would much prefer not to have to ask me to heat up some chicken noodle soup for her. Occasionally the sixth trip of the week to a clinic ten or so miles away taxes my patience. Despite how pleasant and concerned the physician is, I’m sure Nia can’t enjoy visits with Dr. Robinson as she goes over the various medications and the regimens required for Nia’s prescriptions to be effective. Walking back and forth from the washing machine and dryer in the back room to the hall bathroom on the other side of the house as part of the non-ending daily routine invites me to think about so many other things I would prefer to be doing. I know Nia does not enjoy being confined to a wheelchair day after day, not able to freely move throughout the house because there are rooms she physically can’t access. Some days I get up earlier than I want to, or stay up later than I choose to, because Nia is not sleepy at that moment.

Yes, I sometimes wish that this particular phase was ended. But then, I soldier on. I know, not only is no cavalry going to appear to save me, I also know a deeper truth—I don’t need mythical or magical saving. I have been gifted with the example of family and friends who carry on. As my brother, Kenneth, is wont to say: it’s in the genes. I come from people who have made a way out of no way.

Moreover, there is no moral nor ethical failure that links or causes anyone to suffer a stroke. God is not punishing people. The illness is not karma coming back on someone who has done wrong. Especially, considering that the patient was seventy-years-old when the first in the series of three strokes struck, this illness is actually part of the general arc of life. Our bodies wear down or wear out as we age. While it is true that in the long term, healthy, active lifestyles are far better than the average American sedentary lifestyle, that still does not mean we can live illness-free forever. We are in fact mortal and subject to our heath deteriorating. We all, to one degree or another, encounter a major struggle to stay fit as we age.

Although there is obviously a love for the patient, ultimately, the act of caregiving is unsentimental. Regardless of how we might feel about the task at hand, whatever is required to address the recovery is our responsibility, which we volunteer to undertake regardless of how trying our duties may be. Indeed, too often it is not the impossible that confronts us but rather our reluctance to face up to the difficult, or to the repulsive, the distasteful, the disturbing. Sometimes it’s simply the inconvenient. Whatever. When faced with the job of caretaking, it’s simply will you or won’t you do what is required.

People sometimes ask what they can do to help? Perhaps the easiest and maybe even the most helpful thing family and friends can do is come by and sit for two hours or so to give the primary care taker a break. Not only is that easily doable, also, visitations can actually be emotionally supportive to people who often feel forgotten and depressed about their situation.

Dealing with those who are ill is very different from being ill. I believe it is important that we get over the embarrassment inherent in much of the physical tasks that the caretaker must undertake. Also, and perhaps even more important, is letting the patient know that they are not a burden or a failure, especially when they are struggling to overcome a disability or limitation. One of the most difficult things in the world is to accept our weaknesses, especially in areas where we formerly were strong.

Are we strong enough to acknowledge our weaknesses and are we ready to make whatever necessary adjustments to carry on?

You know what Jerry Butler said: only the strong survive. I believe, for sure, we are strong enough to survive, particularly if we acknowledge and celebrate that just as there are many ways to survive, there are many ways both the care taker and the cared for can be and ought to be strong.

After all, survival is our calling card. Not just the survival of our family and loved ones. Not just survival of our race in this terrible, color-struck society. No. Our individual survival is but a small part of human survival. As a care taker, as well as the person being cared for, we don’t have to wish for release. We just need to carry on. We can do this. And we do.

Survival on a global level is what enables the human species to grow and develop. It is human to face whatever music might be sounding. It is human to dance and carry on.

As the primary caregiver, regardless of how I might feel on any particular day, I know: I can do this. I will do this.

13.

At the deepest level of existence, we really do need each other. We humans are social creatures. While there is no new news in that truism, most of us generally do not think on what it means to be human. We go through our days without contemplating that to be human necessarily requires us to be connected to other humans. Even for those of us who are hermits, or misanthropes, or monks living in silence atop mountains of our own making. No matter. We don’t become whomsoever we are without contact with others: first as babies, dependent on parents or surrogates for survival; second as adolescents growing up and maturing together; third as adult workers and parents, propagating both society and our species; fourth and finally as elders, who generally require physical and emotional support even as we impart wisdom and understanding to our society.

Humanity is not a solitary state; to be human means to be social.

The beauty of being human is that, regardless of our condition, we are not alone. Or, as a number of African philosophies correctly assert: I am because we are.

Take care.

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