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. 
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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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