When Racial Healthcare Disparities Become Personal: Part Two

“ Inspired by the healing ministry of Jesus Christ, we, Presence Health, a Catholic health system, provide compassionate, holistic care with a spirit of healing and hope in the communities we serve.” – Presence St. Joseph Hospital mission statement

My father awoke on Tuesday, July 7, in excruciating pain and unable to get out of the bed. He could sit up but he could not get his feet out of the bed. In a moment of panic, he sent a group text to me, my son and my brother asking for help to get to a hospital. My brother arrived, assuming he could get our dad in the car and that he would get him to Chicago’s public health hospital where our father’s lack of health insurance would not be a barrier to services. Instead an ambulance was called and despite my dad’s protest that he be taken to the public health hospital, he was routed to the nearest hospital because of the urgency of his situation.

As I would learn when I arrived in Chicago, our father has been living on less than $250 a week in one the nation’s largest cities. Having been laid off a few months earlier, health insurance wasn’t a priority because daily survival was the name of the game as it is for many working class and poor folks. I knew dad’s financial state wasn’t good but even I was shocked at the reality. I knew that despite his age, he had been looking to find work but job-searching at 62 isn’t a picnic.

Despite my dad’s concerns about cost in the emergency room, he was assured that his care and well-being was the only priority. Needless to say that wasn’t quite the reality we would face when it became clear that dad’s issues were more than a simple backache and that my support would turn from sitting bedside with dad and providing comfort to navigating the maze of bias and finances to ensure his well-being. Less than a week later, I would no longer just be my dad’s daughter but would also become his official advocate and agent via a Power of Attorney. I would also become an official pain in the ass to the powers that be at St. Joseph’s Hospital.

I arrived in Chicago a little more than 24 hours after my father was admitted to the hospital. The first hospital official I would meet with would be the pleasant woman from the Financial Counseling office. Her task was to assess my father’s assets, which are none, and determine how we could best get the hospital bill paid for. At this point, my father was on a steady diet of morphine and other aids to keep the pain at bay and no one had a clue what we were were looking at other than a liver mass that showed up on the MRI and extreme back pain that turned my father into a temporary invalid. I assured the financial officer that we would get the paperwork and supporting documents to her within a few days.

Two days after my father was admitted, it was determined that he needed a biopsy and we had a small break in figuring out one possible cause for the back pain. A fracture at the L4 lumbar vertebra. In less than 24 hours, a biopsy and an ultrasound were performed on his liver as well as a spinal procedure to fuse the spine back again. It was explained that after the spinal procedure, he might possibly need rehab services considering the state that he was in. It was after this that our hospital experience started to turn downright surreal and hostile.

The impact of the meds and procedures had started to weaken my dad even further, yet less than six hours after the spinal procedure, a resident came in to inform us that dad should be released within 24 hours despite the fact that my father couldn’t walk and couldn’t even use the bedpan without assistance. I expressed my concerns and was told that his bed costs $5000 to $6000 a night and since he had no insurance it would be better for him to go home and recuperate. Mind you, my father had been living in a rooming house for single men and there was no way to get support services in that space.  We knew my dad was not going to return to the rooming house and would be moving in with my cousin but my cousin who works full time and lives in a third-floor walkup was not going to be able to take care of him. Dad couldn’t return home until he was able to perform the majority of daily activities with minimal assistance.

For 48 hours, I went back and forth with his medical team until it reached the point that in desperation, I would take to Twitter to start tweeting the hospital’s parent company which in the end did start to move things. Less than 24 hours after I had taken to social media in a last ditch attempt to not have my dad dumped on the street, I met with the hospital’s medical director and the director for the residency program.

Eventually we would come to some consensus over my dad’s care and aftercare but not after having been told that dad could access rehab services in house only to have the hospital’s physiatrist renege on that offer soon thereafter and refuse to even meet with me afterwards to explain his reasoning.

In the end, my dad was released a week after he was admitted and sent to a skilled nursing facility that offers physical therapy two to three times a week rather than the daily rehab that the hospital’s own physical therapist had suggested. It was also clear that my dad’s dire financial status and background including the fact that he had been brought in from a rooming house affected the treatment he received by some of his team, specifically the residents.

People have back stories and they are more than the sum of their current reality. We live in a culture that worships at the altar of youth, none of us are really ever “old” and the majority of us expect to live very long lives. The reality though is that for many at the lower rungs of the socioeconomic ladder, they grow old far too early. For people born and raised into poverty like my father, which was compounded by the harsh laws of Jim Crow, childhood was no respite from harsh realities and life never really did get much better.

Those whose lives are spent dangling in the land between poor and working class often enter mid-life with bodies that have endured too much. Bodies that have never had consistent, proper care. Bodies that have worked too hard at jobs that demanded too much and paid too little. Bodies that often took the quickest pleasures they could which often times backfired in the long run.

My father is a man whose life has been a journey, sometimes he made missteps and the loss of my mother 11 years earlier has affected him far greater than we wanted to admit.  Yet despite the choices that he made, he was determined to create something better for his kids and grandkids. Watching physicians mistreat him because he appears on paper and appearance to be just another bum broke me. To watch him gasping for breath asking to speak and having doctors ignore him while his surly white roommate whose wife had been on the hospital’s board of directors received humane and kind treatment brought home to me just how racial and class disparities play out in our country. Often unseen and rarely acknowledged but with real consequences. The data that is known supports this yet too often we pretend that is is not real.

I am working through my anger, and the realities of this new life which means I will need to return to Chicago often to monitor my dad’s well being. The impact will be felt in all areas of my life and now my own future plans are on hold. As for my dad, he is making progress at the nursing home and eager to get out.

Lastly, thank you. Many of you have reached out with kind words and support which has mattered more than you can ever know. Thank you.
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A Dad’s Humanity…Fighting For Health and Humanity Part 1

Writing is how I process and make sense of the world. So even though I have just returned from the longest week of my life and, as many have suggested,  I should rest…well, the fact is that rest is simply not a priority for me. On my first day back home, the news of yet another suspicious Black death is my reminder that Black humanity is rarely seen and in light of the past week, never have I felt a greater need to show the world Black humanity—not the tropes and stereotypes but our humanity in all its messiness and joys.

Last week, my father struggled for life and while I went home expecting to help him, I found myself fighting for his humanity in the eyes of medical professionals and bureaucrats who decided that how he presented was the total sum of his humanity. They decided that his humanity was not worthy of the best care, based solely off the lack of money in his bank account and the fact that his body showed the signs of a man who was dealt a tricky hand in the game of life and who at times has made great missteps. 
On Tuesday, June 7th, I was prepping for a meeting, feeling a little tired and out of sorts but expecting an action-packed day as I was knee-deep in the annual summer funding slump and wondering how the hell to keep all the organizational balls in the air without another layoff. In other words, a typical day in small non-profit land: crisis and excitement.

As I was walking into my meeting, my phone went off. I figured it was my dad’s daily text, the daily check in that was instituted after he took ill in 2013. Sure enough, it was dad, yet as the message flashed, it was the word HELP in all caps that caught my eye. I opened up the message to find that he was asking for help to get to the hospital as he suddenly could not walk. I had no idea that text message and that moment would change my life but it has.

My only sibling was able to get to my dad within the hour, assuming he was going to drive our father to the hospital and not realizing that it was a real emergency since my dad has a way of downplaying physical discomfort.  Yet when he arrived at the rooming house that my dad has been living in, he found our dad swollen, unable to walk and in real distress. An ambulance was called.

Fast forward a few hours later, and dad’s blood pressure was 193 over 128, his legs and feet were swollen beyond recognition and dad was complaining of severe back pain. When my brother gave me the news, in that moment I realized I needed to get home ASAP. As I learned 11 years earlier, living in Maine does not make it easy to get home to Chicago when a crisis strikes. There was also the added complication that I was in Boston at my office and my clothing/toiletries were in Maine and that I needed to return to Maine to pack a bag so that I could get home. In the movies when a crisis strike, people just up and leave but down here on Planet Reality there were real life considerations like costs, my office, childcare, etc.

By the time I returned to Maine that evening, I knew that they were working to bring dad’s blood pressure down but also had spotted a mass on his liver. The same mass that was deemed inconclusive the last time he took ill. This group of doctors was very concerned since, as I would later learn, his complaints of back pain, coupled with a liver mass and swelling pointed to the possibility of late-stage cancer. A possible diagnosis that was of no surprise to me given the choices and circumstances that have filled my dad’s life.

My dad was born one of 16 kids on a sharecropper’s farm in the early 1950s. He spent the first 11 years of his life on the plantation farm, picking cotton after school and on weekends. It was not optional. My dad’s childhood was set against the backdrop of Jim Crow, and as one of 16 kids in rural Arkansas, there were few pleasures in life. Dad discovered moonshine early in life and my dad has never met a whiskey he didn’t enjoy. Thankfully at 18, he left Arkansas and met my mother, they married at 19 and stayed married for 31 years until my mom’s death. The only thing that my dad enjoyed more than his whiskey and Bible was my mom and for the 33 years they were together, mom kept dad from falling too deep in the bottle.

When we lost my mom in 2004, I knew my dad was in a bad way, he was lost without my mom and while I wanted to help him, I too was lost in my life here in Maine. For years I had carried my own shame about my dad. Why was he so gruff; why couldn’t he be more accomplished? It took losing my mom for my dad to slowly open up about his childhood and that’s when I started to see the true impact of racism on his life; the dreams that had been denied to him. The lost hopes. The wear and tear of surviving while Black.

In the last 11 years I have come to see firsthand how history affects the present; I also learned why he didn’t always take care of himself. I also learned why he rode us, his kids, so hard and why he wanted more for us. Why despite a childhood choked by white racism he insisted that we his kids must be comfortable in white spaces. I also realized that for all the uncomfortable moments in my childhood, that my dad’s steely ways of being have affected me too. He gave me his grit and strength, a love of words, a love of exploration. I see in myself a fear of pain that keeps us from getting close to others and I see the same relentless pride that sometimes borders on dangerous and self-destructive.  I also see in myself how one can be deeply flawed yet inspirational.

My brother had tried to prepare me for seeing our father in the hospital but the truth is, nothing could have prepared me for seeing dad. My larger-than-life, steely-eyed dad who we used to call General Patton behind his back was suddenly an elderly and withered man whose body was wracked with pain. Despite his chronological age being only 62, my dad presents as a much older man. Honestly, his 90-year-old roommate looked younger than him. The burdens and pains he has carried for so long have taken their toll on him and without my mom around, he is a lost man in a world that increasingly makes no sense. Yet despite how awful he looked, as soon as he opened his mouth, my dad was still there and as he told us, he wants to live but he knows he needs to make some changes and apparently had already done some unbeknownst to us.

Having lost my mom early in life, I have often found myself wondering: What would happen if dad got sick? When my mom was sick, my dad was the front-line guy with her and I played a supporting role. Yet when your remaining parent who is hovering near indigency becomes sick, these “what if” scenarios become reality. You realize that you are now on the front line and that the buck can’t be passed to someone else because there is literally no one else to pass it too. In our immediate family, we are down to me, my brother and my father. My brother is a late millennial struggling with the realities that are faced by many as he works to establish himself and while he is the guy on the ground these days, his own resources are limited. These uncomfortable realities have gripped me since getting that text message from my dad.

My parents rarely had two nickels to rub together but managed to raise us in love even if sometimes that love was tough. My father in many ways is the man who I have judged all men in my life by because what he lacked in worldly resources he had in other ways. Namely: honesty, integrity and owning your shit. This past week, I saw my dad openly own his mistakes with humor, so much so that the healthcare providers were disarmed by his honesty. However, it would be that honesty that would work against him as we tried to manage his healthcare because as I would observe, this is a world that cares very little for Black bodies, especially ones without financial resources and who at times have made questionable choices. I watched residents treat my dad with disrespect because of who he is; I watched people who take oaths to heal barely conceal their contempt. I sat and watched as a doctor told my dad they needed to get him out as soon as possible because he couldn’t afford the $5,000-a-night bed at the hospital. Never mind that there are financial resources for people in need and that I was exploring them. To them, my dad was just another bum leeching off the system despite the fact that my dad has always worked. Sadly the jobs he has worked offered low wages and no ways to save for the future. Yet the future is now and here we are…fighting for health and dignity.

To be continued in the next post: When Racial Healthcare Disparities Become Personal.
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Once a man, twice a child

The past several weeks have been an emotional roller coaster for me, yet despite the ride, I have tried to maintain a facade of normalcy in all areas of my life. However, as the youngsters like to say shit got real this morning when I woke up to a slew of text messages and voice mails from my brother. Things are officially no longer normal in my world.

As a blogger who no longer muses in relative anonymity, I grapple often with how much of my private life to share. Yet it became clear today that what I am facing while it is most certainly private, it’s something that many of us will face at some point in life…a sick parent.

On some level deep in my being, ever since my mother’s untimely death, I have often wondered what would happen should my Dad get sick. After all, when my mom was sick she had my dad to take care of her and my brother and I played supporting roles as did other family members. However since my mother’s death, the backup cast members have all met their maker and the only people left to play the roles of primary caretakers are me and my brother. The challenge though is that I am 1100 miles away and my brother is still a young man finding his way in the world. Needless to say it creates a problem.

Right now we are trying to navigate the world of getting an increasingly stubborn and aging man to make the right choices. It’s a fine line, as a child even an adult child, you never want to see your own parents as anything less than autonomous beings capable of making their own choices. Yet in the light bulb moments of this morning, it’s become clear for both me and my brother that there is more than a bit of truth in the saying once a man, twice a child.  It’s all part of this marvelous journey we call life. I hope should the day come that I regress back to my own stubborn place of childhood, that my own children will be patient and not give up on me no matter how much resistance I put up.

Please keep the BGIM family in your thoughts and prayers as I suspect we need them all as we journey through this unfamiliar terrain.