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It was twelve years ago when I was working in a physical therapy clinic and met a woman named Joan. She was coming for treatment because she had received surgery to her spine for lumbar stenosis. Joan was accompanied by her daughter, Elisa, and this duo of women was extremely entertaining. We laughed so hard during our first few sessions together that after the third session, Joan’s daughter Elisa asked, “Can we be friends?” It was an unusual question posed by one adult to another. Grown-ups speak in the world of nuance. When adults meet like-minded souls, they find ways to keep the connection going via joint activities of their children or following each other on social media. Yet Elisa, the daughter of my patient Joan, had cut right to the chase. Much like children do. She asked me directly if she could be my friend and if I could be hers. I responded to Elisa back then by telling her, “I’m kind of short on friends right now. Yes, we can be friends.” Fast forward many years later to the present. Elisa and I are roommates and best friends. Her mother Joan died several years ago, and I have become so close to the family that I mourned her death just as much as her own daughter did. Elisa was a superb caregiver for her mother and I helped as much as I could to ease the burden for both women. It is hard to watch loved ones lose their memories, their ability to care for themselves. Yet somehow, and with unwavering bravery, Elisa watched her mother’s decline until her heart stopped beating. It wasn’t until the year of 2020 that I needed a caregiver for myself. I was living with terrible low back pain and discovered that I required a lumbar surgery with screws and rods. I didn’t want to hear this news; but it was Elisa, my best friend, who pushed me to pursue it. This surgery was accompanied by a three-month recovery period, where the patient (me), would be unable to bend at the waist, twist the spine, or lift any object greater than 10 pounds. That sounded impossible to me. How many times does anyone bend at the waist to reach for an object during a given day? How often do we twist our spines to reach for cell phone in our purses? Elisa dropped me off for my surgery on a frosty morning in December. I tried not to look at her as I got out of the car, for I knew how concerned she was. I was going to do this alone and I didn’t want to put my fear upon anyone else. Little did I know what I was up against. Anyone who has gone through major surgery knows just how awfully vulnerable it feels to be naked in a hospital gown, awaiting anesthesia and the deep sleep which precedes what is a violent assault to the human body. I spent three nights in the hospital. Elisa came to visit on the second afternoon, bearing chicken shawarma from a local Middle Eastern venue. I didn’t eat the food, because my pain was rising to an astonishing degree. I saw visions of Dante’s Inferno, the fiery depths of hell, as I prayed for relief from what is commonly referred to as “post-surgical pain”. It finally stopped, this hellacious discomfort, and I was able to go home.
For several weeks thereafter, I was unable to dress, turn on the water for a shower or prepare meals for myself. Elisa was the person who adjusted the water temperature so that I wouldn’t have to bend down to get to the faucets in the bathtub. Elisa was the person who made absurd amounts of food for me to eat (though because she is Italian, and she never thought the portions and variety of the food to be absurd), she made sure that the food was always on the top shelf of the refrigerator so that I could reach it, and she placed everything that I needed during the day on a small table with wheels so that I wouldn’t bend or twist my spine. Laverne the dog watched over me like a lioness. I was her cub, I was weak and I needed the care of a child. It was a very strange time. I have been a caregiver for my entire life. And at age 45, I needed to be cared for. It felt demoralizing. I couldn’t don pants or socks by myself, and it was a cold winter. I remember asking Elisa, the human, if she could help me change clothing before she left the house for a few hours. “Do you have time to change me?” I requested. Elisa laughed and replied, “Of course!” She then returned me to the sofa and the dog Laverne nestled her body close to me, though as never to cause pain.  Something strange occurred as time passed and Old Man Winter unfurled his steely presence in the Northeast. About one month after my surgery, my mind began to go down different paths. These were imaginary foothills, remarkable lands that I hadn’t traversed since childhood. I spent hours day dreaming, I stared at the falling snow, the grey skies shape shifted like the fingers of God in soft putty.
Elisa continued to care for me, with unerring grace and hilarity. She never missed a beat. Even when I was ornery and obnoxious, she made chicken seared in oil with garlic and hot sauce, she laundered my clothing and cleaned the house to spotlessness, and she made certain that I would not bend down to set the water temperature in the shower. (Even when I wanted to and told her that I was bending down correctly, that I am a physical therapist who knows what she is doing and that I do not need help from her anymore!). What I realized through the time of being on the flip side of caregiving is that it is really quite illuminating. It can return the patient to feeling like a child, in all of the wonderful ways that we associate with childhood. A child does not have to plan meals, or shop for the ingredients of food. The child is simply fed lunch. Whether it is delicious or not (mine always is), the lunch is the lunch. The adult must plan accordingly to make this happen. The child simply eats the food. When the snow falls outside, the adult must shovel, buy salt for the steps and ensure that everything is in the house in case of a blizzard. The child has none of these concerns. The child sees only the magic of snowfall, the anticipation of a day off of school and the potential for igloo or snowperson building. In some ways, it is really nice to be a child. It is even nicer to experience this as a 45-year-old adult. I was afforded this because of my caregivers. Elisa provided a safe haven for my recovery in terms of doing basic life tasks for me. The dog Laverne sensed my weakness and gave to me what makes dogs famous, their ability to look within humans and say, in no uncertain terms, “I love you. I will not allow anything to harm you. I will do anything to help you feel better.” In all of my years of caring for others, it has taken this surgery to show me what caring for others really means. To be a caregiver means that you will buy groceries when you are tired and have worked all day, you will prepare food for someone when they are not always appreciative, you will put pants on someone when they are moaning in pain, you will shovel snow in biting cold while the person you are caring for is marveling at the wonder of snow, and you will have to plan your entire day around that person’s shower. And that is impossibly annoying! Yet as a caregiver, you are also doing something amazing. You are allowing the person whom you are caring for to return to childhood. I am now able to dress and bathe myself, though I still don’t like grocery shopping or cooking. Elisa the human still does an excellent job taking care of the household and I can pull my weight. Laverne the dog knows that I am stronger, though she still glances at me with concern when I overdo things. I have very little pain after my surgery. What has remained is a sense of childhood wonder and excitement. Witnessing the changing of the seasons is nothing short of miraculous. A well-prepared hot meal is delightful. Spending time with animals is enchanting. As is the thrill of asking another person what Elisa asked me years ago: “Can we be friends?”
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Meet Mary. She is an 88-year-old woman who lives in New Jersey. I met Mary several months ago, when she had just returned from the hospital and needed homecare physical therapy. Her legs were quite weak and upon our first meeting, Mary could not get out of bed by herself. Yet there was nothing weakened about Mary’s will nor her humorous personality.
Mary has three grown children and lives with her one daughter, Denise. Denise is a retired flight attendant and it is obvious how good she must have been in that professional role. Denise never sits still, she flits around the house, changing bed linens, organizing food in the pantry, hanging new drapes to allow the sunlight to filter through windows in just the right way, and lighting candles for ambiance and aromatherapy. Denise is a superb caregiver who takes her responsibility of surrounding her loved ones with beauty to an entirely new level. Mary often gets annoyed with her daughter Denise, however. And despite their brief tangles which often end up in teasing a few minutes later, they have coined an expression as to why their life situation is very so common. “My Mama needs to understand that she is now at the time in her life for ‘the changing of the guard’, as I like to say,” Denise explains. “She used to take care of me when I was a toddler or did stupid things as a teenager. Now, it is time for me to take care of her. My Mama doesn’t like this shift, but she has no choice in the matter.” Mary responds to this while shaking her head. “It’s true,” Mary concedes. “I have to put up with the ‘changing of the guard’ and it truly is difficult having a person who you once put diapers on telling you what to do!” Mary copes with this transition by being a person of great faith. She reads the Bible and is part of an enormous prayer group who speaks daily to each other on the phone. Mary makes long lists of people in need of prayer. “I have some pull with God,” she assures me. “My prayer group gets results!” Mary was progressing quite well during her treatment in physical therapy. Yet she was still unable to walk to the bathroom so that she could get into the bathtub. And this was no ordinary bathtub! Mary’s daughter Denise has been known to be very extravagant with her mother. Denise bought Mary a black shining Audi a few years ago. Even though Mary can no longer drive, that black Audi sits in the driveway, waxed and gleaming, as a reminder of her daughter’s generosity. And the bathtub? It is one of those walk-in versions with the upright seat and a door that closes so that the person inside can have the experience of being immersed in water without having to lie down in a traditional tub (which many older people cannot do). Mary had a lot of trepidation, not just regarding walking to the bathroom and negotiating the different thresholds on the floor, from hardwood to tile, but she was especially fearful about getting in and out of this fancy bathtub. She refused to attempt this activity with her daughter Denise, knowing that it would wind up in a skirmish between patient and caregiver. So, Mary and I walked together to the bathroom and she got into the tub. She admitted later that it was easier than she thought it would be. Denise then came into the bathroom to turn on the faucets and fill the tub with water for her mother. The retired flight attendant added bubbles and bath oil to the water and turned on the jets to circulate it. Multicolored lights illuminated the base of the tub. There was even a music feature on this bathtub! Yes, smooth jazz filled the air and Denise lit candles and placed them on the sink, before exiting the room and leaving her mother to bathe. I remained in that bathroom with Mary; it wasn’t long before her face relaxed into great joy and she inhaled deeply and washed herself with a face cloth. “I haven’t had an actual bath in seven months! This feels glorious. God is washing me clean and I thank Him for his blessings upon me right now.” There was something transformative about that bath for Mary. After drying herself off and donning a freshly laundered housecoat, she returned to the recliner in her bedroom. Mary called for her daughter Denise. Denise entered the room of her mother. “I am going to need you to bring me the letters that I have been working on for my prisoners,” Mary declared. I knew that Mary was fond of writing to people in the prison system to help them understand the word of God. But she hadn’t done this in a while, perhaps because she had been feeling so low about her inability to care for herself. Denise was in a hurry, as usual, and told her Mama that the writing would have to wait, because Denise would have to look through the closet for the letters and she simply didn’t have the time in that moment. Mary pulled a small table close to her, picked up a pen and put on her reading glasses. And with that small series of acts, Denise dropped her dusting rag, brought out a step stool, got into the closet and found the letters to the prisoners. Something strange was occurring. In the silence of that room, the ‘changing of the guard’ had been reversed. Mary was once again the mother, the matriarch, the queen of her castle. And Denise had returned to being a daughter, to listening and obeying her mother, much like a young supplicant child would. Was it the bath that had changed the dynamic? My suspicion on this is that Mary was finally able to conquer her fear of getting into the tub, but the power of cleanliness cannot be discounted either. The occasion of the transformative bath was three months ago. I now consider Mary and Denise to be family. Family that I really came to need because of something that was happening in my own life. Through the course of working as a physical therapist for over two decades, I began to notice low back pain. It used to be transient, but during the past summer and fall, the pain became constant. I tried to ignore it, but my Primary Care Physician insisted that I get an MRI of the spine. I thought little of this and kept working through the pain. Yet when the radiologist emailed me the MRI results, I was shocked to discover the damage revealed on the imaging. I recall my fingers trembling as I held my phone while reading these words. I told Mary about the MRI. She often witnessed me wince in pain as I bent over to put on her socks during her physical therapy treatment. Mary’s motherly role was now turned in my direction. “You need to follow up with a specialist and see what can be done. You are too young to live this way. And stop putting on my damn socks! I can have Denise or my grandchildren do it.” Through much searching, I found a spine specialist in Manhattan. He is something of a genius, though he is Asian and very modest, so he doesn’t acknowledge this about himself. This surgeon wants to perform a spinal fusion on my lowest lumbar vertebrae. He will implant two screws on either side and within three months, bone will grow around the screws and stabilize this unsteady segment of my spine, which had been causing all the pain. He told me that there is no alternative to surgery; that my spine would simply get worse if I continued to ignore this problem. Through the fear of this news and the upcoming surgery, I have had Mother Mary to counsel me. “You will finally be on the flip side of the coin of caregiving,” she says. “I was a nurse, so I am a very bad patient. Most people in the healthcare setting are because they think they know better. I believe the same will be true for you.” Yes, this was something I was ALL too familiar with! I used to visit my Primary Care Physician with my list of symptoms, develop my own diagnosis and suggest the proper plan of care and medication for treatment. It was very humbling to be told by her that “this isn’t the way the practice of medicine works, my dear. I am the physician and I will decide what you need.”
I must admit that despite my great confidence in the Asian surgeon and the research I have seen which correlates very positive long-term outcomes associated with the procedure I will be undergoing, I am quite scared about the prospect of lumbar surgery. I feel guilty about having lifted so many people out of bed during my career, without ever asking for help or realizing my body’s limitations. But then I stop and remind myself that this could have happened if I were a farmer’s wife in the 1800’s, from gardening, chopping wood, and working the land. This can happen to anyone with a job in manual labor.
I am relieved that I am lucky enough to have found this great surgeon and that I have Mary to assist me in the ‘changing of the guard’. She tells me, “Luck ain’t got nothing to do with it. It was God that made this happen. I will be praying for you. I am going to need your surgeon’s full name, so I can pray for him and his scalpel. I will pray for a sanitized Operating Room, so there will be no risk of infection. My entire prayer group has got you. And as you might remember, we have a lot of pull with God.” As I anticipate this next season of my life and what it will resemble, I hold onto the image of Mary taking her bath. The colored lights and the rising bubbles of the water from the jets. The smooth jazz music. The lit candles that smelled of peaches and cream. Mostly, I will recall the look on Mary’s face during that bath. The bath that changed her and gave her back her freedom. The moment when Denise searched for the letters to the prisoners after Mary was fresh and clean and ready to face the world once more. I know I will one day return to my previous health and strength. How could I not? I have the backing of Mother Mary and her entire prayer group. The ‘changing of the guard’ will happen and I will get through it. But what makes Mary’s prayers even more remarkable is that she will call upon God to help the people who will be taking care of me. There will be many of them and they will be dealing with a very bull-headed physical therapist who will be itching to have things done her own way. “Oh, my baby,” Mary exclaims. “Those people need my prayers most of all. Your caregivers will have their work cut out for them!” Indeed, they will.  I happened to be traveling through Galveston, Texas on June 19th two years ago. I went into a store to buy some Texas BBQ spice rub and the black female owner of the establishment had hung a large sign in celebration of Juneteenth. In an effort to get to know the people of Texas, I asked the storeowner about Juneteenth, as I had never heard of it. This woman explained to me that Juneteenth honors the day when enslaved people in the State of Texas were set free. “The Emancipation Proclamation had happened two years earlier, but Texas didn’t have a lot of Union soldiers around to uphold the new laws,” she explained. “Texas was late to the party, until June 19th, 1865, when a Northerner read federal orders for black Texans to be set free from slavery.” I was completely humiliated by my ignorance of this historic event. Juneteenth is now gaining the recognition that this day has deserved since it was declared by the State of Texas in 1980. Why, like the State of Texas had been after the Civil War, had I been so late to the party in learning what this day was all about? The following story is about a man who wasn’t from Texas, nor was he black. His name was Domenick and he lived in East Harlem, New York. But I believe that the woman selling me BBQ spice rub would have seen him as kin. Perhaps we will all see Domenick as kin after hearing his life’s story. Domenick Guidice was born in 1920 to parents who had immigrated to the United States from Naples, Italy. At age 18, he was drafted to the United States Army during World War II, but served as a typist within the States, which suited him well. After all, Domenick wasn’t one to fight; he was a lover of words and a poet who scrawled words on every napkin of each diner he frequented through his teenaged and young adult years.  After the war, Domenick went to college and became an accountant. He worked for MGM Studios in New York City and made good money. But something else was happening during those years. The Civil Rights Movement had begun to unfurl, and Domenick started attending underground meetings to fight for racial justice. Domenick realized that being an accountant held little meaning for him. When the MGM office for which he worked relocated to California, Domenick declined to go. Instead, he began attending protests for Civil Rights in New York City. And by the year of 1963, he became a Captain Leader for the March on Washington. That was on August 28th of that year. Just two weeks thereafter, on September 15th, four black schoolgirls were killed in a bombing with sticks of dynamite at a church in Birmingham, Alabama. Domenick got in his car and drove from New York to Alabama to protest again. It was during this year when he met the love of his life, Joan Ferguson. Joan had been an actress in Greenwich Village. She watched a white American man being arrested with a few local priests during a rally for Civil Rights on the television. Joan joined the picket line after witnessing the quiet fury behind Domenick’s countenance as he was being hand-cuffed by New York City police officers. She married him less than one year later. Domenick and Joan had two children. They moved to the South Bronx, and Domenick went back to college at the Long Island University to get a second degree. This college experience was far more in keeping with his personality, and Domenick secured his first teaching job educating 5th graders in the Castle Hill Section of the South Bronx. It was there that he instilled his love of poetry and reading to children of all races. Domenick brought a briefcase to work each day; because of his savoir faire with language, he referred to this briefcase as his “valise”. Within the valise, Domenick kept letters from his 5th grade students. These were the letters that were written towards the end of the schoolyear, which, as any teacher knows, are typically both flattering and apologetic in nature.  Domenick's 'valise' Because I know Domenick’s daughter, I was able to go through his valise just last week. Amongst the many writings therein were two letters from the principal of his elementary school which thanked him for organizing assemblies to educate the students on the work of Dr. Martin Luther King, Jr. Even though Domenick was now a teacher and a father, he refused to stop fighting for racial equality. From his initial beginnings of working as an accountant for MGM, to his years of protesting publicly for Civil Rights, Domenick had redirected his life’s work towards teaching children. Because the pay for a schoolteacher was not nearly as good as what an accountant would earn, Domenick drove a taxicab each night to make ends meet for his wife and children. Domenick’s life path was one that was imbued with great meaning, but it was not without personal sacrifice and anxiety. He kept a leather-bound book within his valise where he wrote his poetic musings. One can picture him with a furrowed brow in the teacher’s lunchroom in the 1980’s, scribbling his thoughts, concerns and worries about the future that the world held for his students. Amongst the many penciled scrawls in his leather-bound book, Dominick wrote this: “Humanity can be blessed many times over and also be incomprehensible. The long history of torture and degradation of the weak and innocent is yet to be eradicated by us. Many tears have been shed by the innocent and brave.” Towards the end of his teaching career, Domenick developed early dementia. Very few noticed his forgetfulness and difficulty finding words, except for the black female principal at the Community School 6. Her name was Eloise and she was concerned for this teacher, who had only two years left before he could retire with a full pension. Eloise loved Domenick and knew that she needed to protect that pension for which he had worked tirelessly in helping children learn to read. So, she took Domenick out of the classroom, kept his status as a full-time teacher and created a position where he could assist other teachers in reading activities in the school. (Perhaps this was what Domenick had marched for all along; equality in work for all people, and the overriding belief that people could care for each other with justice and compassion. If only they dared to try).  Going back to the modern-day tale of my ignorance of Juneteenth, I am struck by many things about Dominick’s life. While the March on Washington was incredibly bold and daring, as was his trip to Birmingham Alabama two weeks later, it was Domenick’s day-to-day work which made him a true leader in the fight for racial equality. It makes one ponder and imagine, what if more people had done this in 1963? Even if they didn’t attend these large and famous protests, what if people took a personal stance on ending racism as they lived and raised children and performed the most mundane of tasks? Where would we now be as a society if there had been more Domenicks who cared about every child, every person, no matter the color of their skin, and who wanted to stop the tears “shed by the innocent and brave”?
It goes without saying that we wouldn’t be where we find ourselves today. As the world will finally celebrate with reverence a holiday as potent as Juneteenth on this very week, may we all learn from Domenick. May we be very careful about what letters, stories and ideas we carry within our ‘valises’ and bring forth to the world. May we remember that it needn’t be a holiday to carry out racial justice in all that we do. Domenick grappled with fear for the future, but what if our actions now would have eased that fear? What if we challenged ourselves about the nature of racial divide and did something every day to narrow the distance between each other? In Domenick’s own words, “Humanity can be blessed many times over.” Let us celebrate Juneteenth with the soul of Domenick Guidice and the souls of the many people who suffered without reason from racial inequality. And let’s not stop on June 20th, either. |
