This is a story about my mother, Sylvia, and a story about the devastating stroke that changed everything. But before I tell you more about the stroke, I need to tell you a little about her.
My mother was born in Haiti, in a town called Cap-Haitien, referred to as Au Cap to most Haitians. It is a town known for its busy and colorful market places or marchés, where women from the surrounding villages come to engage in commerce while gracefully balancing merchandise on their heads. Cap-Haitien is situated in the northern part of Haiti and I have heard it said that most of the revolutionaries came from there. Judging from my mother’s volatile temper and unstoppable drive, I believe that to be true.
I also believe the major influence in her life was her father, René LaRoche, my grandfather. René was a man of meticulous idiosyncrasies. These included taking showers with very cold water and always sitting at the dinner table formally, even if just to eat a sandwich. It was a rare thing to find him walking under the hot Haitian sun without wearing a crisp white shirt and tie.
René stressed that education was the key to living in a civilized world, and this belief in the power of education was something my mother passed on to me. It is our umbilical cord between generations. She raised me to believe that education is the road to success, the way for a black man to make a mark in a white man’s world. With this value system as a background, she gave me my first identity in this world.
My mother emigrated from Haiti to the US in 1968, leaving my father, my younger sister Carline, and me to rejoin her a year later in New York City. Like most immigrants from the Caribbean, she came to the US in search of a better life for herself and her family.
We lived in a one-bedroom apartment on Empire Boulevard in the East Flatbush section of Brooklyn. I remember happy times as a child in that apartment, when she would hold me tight and try to teach me to dance to the traditional music of Haitian parties, Compas Direct. The more I fussed and tried to get away, the tighter she held me, until I relented and learned to dance. Like most childhoods, if the whole truth was told, it would reveal events that were far from ideal. With radically different dispositions, my mother and father were rarely on the same page. Strife, arguments, and anger filled our apartment more times than I care to remember, but I prefer to reflect on the good times.
Throughout my years in school, she often demonstrated how much she wanted me to succeed. During my high school years, I remember her staying up with me until the early hours of the morning, typing a report. When a typing mistake occurred, she had to get a bottle of “White-out” and wait until the liquid dried on the typing paper before she could begin typing again. This process went on throughout the night until eventually I would fall asleep to the comforting tap of the typewriter keys, letting me know that I was not alone.
During medical school, I often felt so overwhelmed by the course work that I did not even know where to begin studying. The nights before the biochemistry exams were the worst. On several occasions, after studying most of the night, I would become anxious and feel as if I could not remember anything. Thoughts of failure would enter my mind and it was only my mother’s voice, or her silent yet reassuring presence at the other end of the phone at two, three, or four in the morning that was able to chase those thoughts away and still my anxiety.
Today, we are at a Brooklyn rehabilitation hospital, in a room with large windows facing the entrance. Before they enter the main doors of the facility, visitors are greeted there by well-manicured hedges spelling out the word WELCOME. I look into those familiar brown eyes and see a prisoner, screaming to get out but unable to make a sound. Her eyebrows come together and move upwards, speaking of sadness and discomfort. The wrinkles on her forehead express that familiar look, daring me to help her. I find it hard to believe that this is my mother, the woman who bore me and raised me, who may know me better than I know myself, staring at me like a helpless frightened child.
I have to find the source of her discomfort before she crosses the threshold from discomfort to pain. “What could it be?” I wonder. “Is it the way she’s sitting in the wheelchair? Should I change her position? Has she been sitting too long? Does she have a headache or cramp and does she need to be placed back in bed? Oh God … how I hate that look … that language spoken through the eyes that I can never seem to understand.” I begin searching frantically for what those eyes are saying.
Two years earlier, at age 58, my mother had a severe stroke to the left side of her brain, resulting in an expressive aphasia---rendering her forever unable to speak. Moreover, it meant that her world was changed forever. She became a different person overnight. That incredibly functional woman who used to walk across the Brooklyn Bridge in the afternoons for exercise, the woman who used to prepare a consoling cup of tea for me at 5:00 in the morning after I got home from a strenuous night on call at the hospital … that woman was undeniably gone. She was replaced by a broken shell with my mother’s spirit entombed. This was Sylvia’s first death. Years later, I would come to appreciate how much of Pierre had also died that day.
Soon after the stroke, she spent several days in a coma, and was later placed on a respirator. Unfortunately, when the effort was made to have her breathe on her own, it became difficult and she developed complications. She underwent a tracheotomy and tube placement to make her more comfortable as the respirator continued to breathe for her. Several weeks later, when she came out of her coma, an attempt was made to remove the tube, but she nearly aspirated on her own sputum. She was eventually weaned off the respirator, but the tracheotomy tube, otherwise known as a “trach,” stayed.
In the room, an overhead television is showing her favorite performer Neil Diamond at a concert singing “Sweet Caroline … good times never seemed so good.” Her mouth opens to say something, and what her mouth cannot say, her left hand goes on to elaborate. She shakes her left hand in front of my face and I hear the heavy breathing from her opened trach tube, which ironically decorates her smooth neckline like a medallion on a necklace. I touch her right arm to make sure that the brace is not too tight and the left hand vehemently begins to move up and down. “I’m doing something wrong,” I say to myself, beginning to feel frustrated. She does not look at what I am doing on the right side, but winces as I move the right arm. I go on to explore her right thigh and knee. I do this methodically, not wanting to miss anything.
In addition to her speech deficit, Sylvia’s right side is paralyzed, including the lower right half of her beautiful face, resulting in a crooked smile whenever she greets anyone. Her right hand is useless and the right leg is a lesson in frustration. The rehabilitation team assigned to her works feverishly trying to prevent the contracture that is slowly compromising the extension of the knee. She already needs a brace for her right hand as contractures are spreading along the length of her fingers like a devastating fire destroying everything in its path. It all seems like a futile fight against the inevitable.
In the first months after her stroke, I was asked to consent to the placement of a tube into her stomach in order to have her fed directly. Until that time, her nutrition came through the combination of both nasogastric and intravenous tubes because her doctors and I were not sure if she was yet able to swallow. Unfortunately, these sources of feeding were not providing sufficient calories.
I remember looking at my mother with the eyes of both a doctor and a son. I saw a woman lying in a hospital bed with an intravenous tube in her left arm, another tube protruding from her nose and a catheter from her bladder. I dreaded the thought of another tube in her body. “Another invasion of her body and another risk for infection,” I thought.
“Listen, let me work with her for a week … if she is not able to swallow by that time I’ll agree to the tube,” was my response to the staff. As the doctors turned to leave, I whispered a prayer, “Lord I’m going to need your help.”
As if in answer, it occurred to me to begin feeding her with soft food like ice cream or yogurt. I immediately went out, bought some yogurt and, with a small spoon, began trying to feed her. “Mommy, you have to learn to eat and swallow again,” I said to her.
With a nod, she seemed to understand.
I began by giving her small mouthfuls and with great trepidation, I waited to see if she would cough or swallow. She looked directly into my eyes and allowed the spoon to come to her lips. Slowly, her jaw began to move. I was not sure if she swallowed or not, but she did not choke. Mercifully, she did not choke. I felt the air slowly come out of my chest while her eyes remained fixed on mine.
After checking her mouth for any trace of the yogurt, I gave her another spoonful, ready to act if she should show any signs of trouble. Surprisingly, she opened her mouth automatically as if she had never stopped eating and invited the spoon in. I watched with anxious excitement as she closed her lips around the spoon to hide the yogurt in her mouth. She looked at me with those childlike brown eyes that seemed to be asking: “Am I doing this right? Is this what I should be doing?”
Next, we tried ice cream and she went after the ice cream enthusiastically, letting the remnants drip down the corners of her mouth. “That’s it … I knew you could do it!” I said. We continued this diet of yogurt and ice cream while she was still receiving intravenous supplements.
Sometime during the course of these exercises, she had removed the nasogastric tube from her nose. I guess she decided that she no longer needed it.
After a week, the staff trusted me enough to try feeding my mother mashed potatoes. We started from the beginning, once again letting her tongue taste the mashed potatoes, and later allowing her to swallow a small portion of what was on the spoon. With each mouthful that she swallowed I felt more and more encouraged.
Later, when we gained more confidence in her ability to swallow, friends and family would bring other dishes for her to eat. My sister Carline would meticulously feed her while her eyes went from the spoon to our faces and then to the television, always glancing to the left. She especially enjoyed a fish soup brought by our family friend Carmen P. She never needed to have the stomach tube placed.
Continuing my examination, I check the brace placed on her right leg and heel pad protecting her right foot. As I look at her foot, I remember the times Carline came, sat on the chair placed at the foot of the hospital bed and used her cosmetology skills to give my mother a pedicure. Whenever I entered the room, my mother would greet me with her smile. That crooked smile would greet visitors again and again as they entered the room, followed by those bright eyes, inviting them in.
While I am examining her foot, her left hand continues to shake, with the index finger waving in the air. The pinky, ring, and middle fingers of the left hand are already partially contracted. It makes the left hand always look as though it is pointing to something even when she is just waving good-bye. I am still at a loss as to what could be the source of her discomfort. I move on to examine the left side of her body, which should not be the source of any pain or discomfort. After all, she has a great degree of mobility on that left side. I bend down to examine the nicely manicured left hand but she pulls away from me with a strength and rudeness that surprises me. I understand that she has grown impatient with my efforts. More than impatient, she is angry.
Sylvia had always been short tempered and my impression is that her stroke has opened a floodgate in that area of her emotional life. I would often see the frustration in her face when she was trying to communicate a thought and no one was able to grasp the meaning. It was like chasing shadows. We were consequently forced to look deeper into her eyes for the woman that once was and try to decipher her new language. Many times after these clumsy efforts at communication she would wave her left hand as if to say “forget it” and angrily focus on the television, ignoring all else.
I leave her hand alone and turn my attention to her left thigh and foot. I do not seem to be getting any closer to whatever is disturbing her. I examine her thigh and massage her muscles. She pushes me away with her left hand, clearly telling me, “That’s not what’s bothering me!” “Mommy, map essaye aide ou,” I say in Creole, which means, “I’m trying to help you.” She is not listening. She is now absorbed in her pain and just wants relief. I am supposed to provide her with that relief but I do not know how. She is fighting me. She has had enough of this blind man bumping into fragile objects. She rejects any further intervention on my part, and looks up at Neil Diamond who is singing another song to her.
I stand up exasperated. Droplets of sweat cover my forehead and I am overwhelmed by an emotional exhaustion. We are both frustrated at the other’s limitations, and words are not needed at this point; they would just get in the way. She is obviously frustrated at her newfound limitations, along with my general incompetence, and she looks up to hold onto one comforting pleasure of her past life—the songs of her favorite performer. I am angry at life’s apparent unfairness and my own inability to pierce this impenetrable communication barrier. I feel frustrated with what I see as a lack of appreciation on her part for my efforts to help her, but I also wonder what else lies behind those bright eyes staring at the television.
What would she say to me if she could? A year ago, those same eyes had opened wide as she looked at me from her hospital bed as if I had suddenly grown a tail when I shared with her my plans to begin a residency in psychiatry. Although at the time I had not yet begun my psychiatric training, I did not need any such training to clearly understand what she was not able to say. Today, as a first year psychiatric resident, I am lost. “Does she see herself through my eyes? Is this why she is now refusing to look at me? If so, is she rejecting my help or possibly some aspect of herself? Does she meditate on precious hopes and dreams that will never be or on memories of a prior life?”
Even now as I take a moment to contemplate these questions and reflect on my own fleeting hopes for her full recovery, her face begins to grimace in pain and she looks at me again, this time with tears that make her eyes glisten. I swear I can almost hear her shout, “Help me!” louder than the sound of cannons. I bend down again, but the only thing left to examine is her good left foot. I suddenly notice her foot shaking up and down, not with a lot of power, but definitely shaking. “Was it shaking before?” I wonder. “Did I just notice that?” Because this was her functional or “good” foot, she wears a sneaker that nicely matches her warm up clothes. She lets me touch it.
I kneel to take her ankle with my left hand and remove the sneaker from her foot with my right hand. I hear the familiar sound of her exhalation from the opening of her trach tube, and look up to see that crooked smile of hers. She is smiling and looking down at me with those beautiful bright brown eyes. It is then that I realize that her sneaker laces have been tied too tightly and this is the cause of her distress. “Such a simple thing,” I think to myself.
We stare at one another and our eyes speak with perfect understanding. She touches my chin with her left index finger, gently lifts my face up to her lips, and kisses my cheek. I laugh and cry at the same time.