Swimming with Snakes: My fight for my life and health care reform

One of the faces of health care reform remembers life before the ACA and the grandmother who inspired her to fight for her life and others.

Three generations of women: Gladys Bailey Sullivan (left) sits on the porch of her family home in Kentucky. Her youngest daughter, Cheryl Sullivan (center), sits on the steps of Fisk University’s art building. Granddaughter, Dawn S. Smith, smiles on the front the Sullivan’s family home.

She had a big wooden paddle. Etched in its maple grain was a list of rotten behavior that swung it into action. Grandmama did not have to spank me much. I could never disrespect a woman who , just for exercise, swam across the Tennessee River with my aunt on her back as snakes swam by. Even the most respectable people face disrespect. During segregation, Gladys Bailey Sullivan stared down Klansmen who invaded a Kentucky diner. When one of the terrorists mistook her for a white woman, he offered her a membership card. The relic later hung on our kitchen wall as a reminder of the ignorance of hatred.

Grandmama was a teacher who balked at the achievement gap proposed by “separate but equal” laws. When segregationists theorized black students were inferior learners, she educated future scholars. Those black students, and even white pupils who arrived in her classroom after integration, begrudgingly followed one rule: Mrs. Sullivan did not accept excuses, only excellence.

Gladys Sullivan’s oldest daughter, Felice (center) poses in Lincoln High School.

Excellence happened. Kings and queens marched on Washington. Rock and soul royalty sang for civil rights from their musical thrones. The world moved easier because of inventions from men and women of every delicious hue. In some states, kids were not learning the entire kaleidoscope of American history. Grandmama assisted in the creation of black history curriculums in Kentucky with collaboration from the state of New Jersey, where my aunt was also a teacher. A fuller spectrum of American history was available to me when Mom moved me from Atlanta to Kentucky for a Sullivan-style upbringing after her divorce. As I read my history book aloud, Grandmama would nod from her big pink chair, with the big paddle dangling by her side. Every morsel of Harriet Tubman and Frederick Douglass fed a belief in what I could be. I was unaware who freed their stories for my consumption.

We sometimes played hooky. Her Pontiac would pull up to the front of my elementary school, and we’d do lunch at a senior citizens center and Arby’s, even eating white beans at the front of Stacey’s restaurant while musicians entertained fancy people in the back lounge. Every excursion was an opportunity for a lesson my friends would not learn until decades later. I stomached cacciatore this and that from her posse of women known simply as The Club. They rattled poems about the perils of homemade lye soap and darker times. Grandmama, with her fingers dug into my spine, chimed in: “Dawn’s written a poem. Get up there.”

Every escapade weathered the interruptions of former students who said, “Your grandmother was tough, but I’m better for it.” It was true. Her toughness wove through her relationships like the quilts she stitched. She was exhausting and necessary. Stories about her slapping my aunt — who “Yes ma’am”-ed a white woman with too much vigor during segregation — made her my bogeyman and Wonder Woman at the same time. Her approval was elusive. But she blessed us with her steely spirit and made us strong.

Hints of praise shimmered through when we least expected it. “I like you this way,” she whispered. Grandmama came to the University of Georgia to watch me speak before a student organization I founded. Her head nodded and eyes beamed through my entire speech. Lying next to me that night, she wondered aloud why I was not bold and strong with her or my mom. I dared myself to be “this way” for the rest of my life.

She began to slip away from me two years later.

Gladys Sullivan (right) reaches for her five-year-old granddaughter Dawn (left) on the beach.

Grandmama died as she lived: teaching. Drifting into twilight in her hospital room, she mumbled and motioned to a classroom that was not there. Watching her teach her final lesson was our only comfort to the reality that she was bleeding internally. She was gone the next day.

At her home going, I saw a teacher’s lessons multiplied as grown men and women came before her casket to show mourners what her education produced. They blossomed into principals, teachers, councilmen-turned-mayors, and writers. They grew strong. Her family continued her legacy. I could not find my place in the pride of lionesses. But I had their grit and a knack for writing, a talent Grandmama feared would land me with my legs up on a Hollywood agent’s couch.

My brain tumor would not let me get that far.

Before I received my diagnosis, electric shock pain had fired through my brain and body for over half of my then twenty-eight-years of existence. A tiny lesion was congregating in my lower right parieto-occipital lobe, a dangerous intersection of the brain responsible for sensation, vision and, cruelly enough, my ability to read and write. The invader was an aneurysm, infection, stroke, but “…probably not a brain tumor,” according to my doctor. Mom quit her job in Kentucky and was in Atlanta the next day.

I soldiered through at first, hoping my health would not come into question. Three days after telling my boss about my brain lesion, my mother, who needed a job in Atlanta, searched the “Help Wanted” ads at my hospital bedside. An ad for my job jumped out amongst the classifieds. They were replacing me. I employed the diversionary tactics to convince everyone I was not scared and mad as hell: I recited Scripture and played the strong, black woman. At night, I cried to my God and Grandmama for strength. My dreams had not lost their vigor, so I submitted my choreoplay to a small theatre group in Los Angeles. It was accepted. I soon whipped upright into another job where I excelled. My choreoplay opened to favorable reviews. But I would not be there to revel in the applause.

Something was on my mind. A year and a half after discovering the brain lesion, my doctors and I still didn’t know what it was. After convincing my reluctant neurosurgeon to do a biopsy, they discovered the spot on my brain was a benign ganglioglioma, one of the most rare and electric of all brain tumors. It was a little monster. The brain tumor had squatted in the parieto-occipital lobe, so surgery and radiation was prohibitive unless it grew. My worsening symptoms confounded my ever-changing medical team. My employers did what far too little companies do for staff with disabilities and chronic illnesses: they accommodated me and allowed me to work from home. I worked hard to prove it was a wise choice — working more while billing fewer hours. A promotion and raise was in my future. After a new executive came aboard, my boss began to refer to my brain tumor as “my shortcoming.” The call from Human Resources came before I could plead my case. I was out of a job, again. “I’m going to turn this into the best thing that ever happened to me,” I said to my mom with such defiance, I had to believe myself.

“You’re a strong, black woman,” Mom said every time I dared to feel sorry for myself. What could a mother say as her only child’s body contorted in pain, with veins engorged, crying for her mom to make it stop? She would escape to the next room for a moment and re-emerge, her eyes red and puffy, to comfort me. We said nothing of what the tumor in my brain was doing to her heart.

Cheryl Sullivan (right) holds her five-year-old daughter, Dawn’s hand (left) as they enjoy walk on the beach.

At night, I thought of how Grandmama fought death — and us — as her body began to fail her. We almost lost her right after my grandfather died, when I was a girl. Her weight plummeted to a paltry 80-something pounds. A nursing home was the only choice. Disgusted with her new accommodations, Grandmama warned she would crawl from her deathbed and crawl back home. (Oh, how my young ears got an education as her curses rang throughout the nursing home!) Grandmama was back home and driving in the car that she secretly purchased for herself when I won my first writing award in high school with an essay about a woman who seemed too stubborn to die. Now, drowning in the deep dark of painsomnia, I was having one-way conversations with my late Grandmama and wondered if she could give me an encouraging push forward from way up there.

“You are going to have a powerful testimony,” my friends said. Family members prescribed holy water, prayer peppermint, and a library of miracle cures from the Internet. I didn’t have the courage to ask for real help. In the fog of illness, taking care of yourself is never an option because being ill is a beautiful battle for a higher purpose. What choice was there but to fight…fight… fight? The bills were standing in line, waiting for me. Working for someone else no longer offered the security of a steady paycheck and health insurance, so I took the plunge into self-employment and became a freelance writer.

Necessity will make you do amazing and ridiculous things.

Everything I wrote was a rebellion against the cells congregating in my brain without my permission. Every praise from a client felt like a victory. By now, the electric shock pains from my brain tumor ripped through me with such intensity, I needed assistance to move from the couch to my bed. Words and ideas were moving out of my reach. Somehow, I would grab them and hand them to clients like balloons. Reaching for the words got harder each time. Mom, who routinely scoured the Internet for medical research after each episode, found an epileptologist at the Cleveland Clinic who specialized in my brain tumor. The hospital, acclaimed for its cost-effective medical discoveries, was out-of-network. My doctors agreed that the Cleveland Clinic was my best shot for a cure. For two years, we appealed to CIGNA by citing that my chances for adequate in-network care were unlikely. I was paying $753 a month. As one… two… three… and finally, nine denial letters from CIGNA arrived in the mail, I clung to every lesson the women in my family ever taught me.

I was a strong, black woman, but barely.

Five-year-old Dawn S. Smith (left) smiles as she stands alone on the beach.

Patient-warriors gave me a second wind to fight for others and myself. When political action committee MoveOn.org announced it was looking for stories for its health care reform campaign, I dove heart-first into an email with our stories. A few weeks later, a passionate producer contracted by MoveOn.org, sat at Mom’s dining room table, discussing a grassroots campaign that would invite Americans into my health care battle. I was unafraid. As my dog watched the producer talk back to a politician speaking on CNN, I looked at Mom and whispered, “Grandmama would be proud of me.” I’d been swimming with snakes all my life. Jumping in the water with a few political animals couldn’t hurt.

It was time for them to hear us roar. MoveOn.org emailed a petition to its massive membership database, asking CIGNA to reverse course on its decision not to cover my stay at the Cleveland Clinic. Over 100,000 signatures poured in. Two days later, I received a phone call from CIGNA corporate headquarters, agreeing to pay for one week of tests. As a communications professional, I knew this campaign would not guarantee coverage for ongoing treatment once the spotlight waned. My suspicions were confirmed when CIGNA increased the price of my anti-epileptic prescription by 10,000% days later. I threw myself at CIGNA’s bureaucracy for two days without receiving an answer. MoveOn.org and the media intervened again. CIGNA apologized for the “clerical error” and assigned me a nurse case manager. “What about your other customers?” I asked. The death of Nataline Sarkizian, a teenager who died waiting for CIGNA to approve a liver transplant, was still a topic of the public’s outrage. Her story was another tragic reminder that our lives rested, not on the wisdom of our medical providers, but on an industry so calcified in bureaucracy that it denies appeals, even when they are mutually beneficial to patients and insurers.
 
Something had to change. It never occurred to me to say “no” when MoveOn proposed that I hop aboard an RV with the producer and three other strangers for a five-state road trip, as a face of health care reform. Then I saw the vehicle that was to be our chariot. “Oh God, Dawn,” my mom gasped as she spotted the boxy RV, and our producer beaming beside it. My claustrophobia had to wait. My new roommates, my mom, and I hustled to meet a pack of supporters for a speech in front of the Georgia Capital.

Signs with my picture and name on it waved in strangers’ hands. The sight of the breadbox-shaped RV, and my mom’s teary sendoff speech, left me feeling boxed in by the undertaking. It was too late to back out. I approached the podium and imagined Grandmama pushing me in the back, as she did when I was a kid: Get up there, Dawn. I poured my story into the microphone and the “Stand with Dawn” campaign kicked off.

The days whizzed by in mountains and valleys. At the peaks, I felt the rush of speaking to supporters who honored me with “You go, girl” and stories of survival. I met veterans denied for treatment; Leslie, a mother who lost her son; and Rhonda, who wondered if her next seizure would kill her. Together, we roared like wounded lions in search of something powerful. For a moment, as I wove our stories into a collective call to action, I had dominion over my symptoms. My pain always charged back. Ryan offered comfort in the back of the RV as the beast shook us all the way to the next appearance. After a full day, the team and I hauled our bodies into the home of a generous MoveOn member because tomorrow, we would roar again.

Susan’s story is one of thousands of messages in a pill bottles we delivered to Congress and CIGNA.

The wear and tear of traveling, while fighting to insure accuracy and dignity in a campaign that cast me as a healthcare victim, left me worn. The narrative wasn’t completely off base. Brain tumor symptoms, skyrocketing premiums, and CIGNA’S inactions on treatments upended my world. I allowed my tumult to become part of the campaign for health care reform. Just as MoveOn amplified my voice, I shared the stories of others along a campaign that would have exhausted the healthy.

There would be no time to mull over the semantics. We were pulling into Falls Church, VA for one last house party before we met with lawmakers and activists in DC. We were gaining traction. MoveOn wanted to add more days to the tour. Eyes widened as the producer threw out Jesse Jackson’s name as a possibility for a future appearance in Philadelphia. First, MoveOn wanted to shoot a commercial asking CIGNA’s CEO to meet with us when we arrived. Morning grogginess still had me in a chokehold when the MoveOn gang and our hosts tugged at the bed sheets and furnishings around me to transform the guest bedroom into a hospital room. It would have been an evocative scene if it were accurate. “But your pajamas look like hospital slacks,” said my sweet host over my objections as I slumped over in her bed. My pajamas were not my problem. Heat welled beneath my skin. The walls caved in as I talked, but my allies only listened to each other.

Over the next few days, I was going to charge into Washington and Philadelphia with 20,000 health care stories MoveOn members had stuffed in our hands, email inboxes, and even mailed in pill bottles. The thought of starring in a Sally Struthers-style commercial that would follow me for all of personal and professional life was enough to make me bring the campaign to a grinding halt.

I exploded and stormed into my hosts’ guest bedroom.

“I have to go home and look in the mirror after this,” I said to Ryan, who came to check in on me. She was a welcome buffer between my needs and those of the campaign. My extemporaneous speeches, interviews, and articles were the best testimony of a broken health care system. After all, if business owners, teachers, and health care providers who fought alongside me could not navigate the health care system, it was time for reform. Besides, the woman they wanted to portray in a hospital bed waiting for others to act was not the woman my mama and Grandmama raised. I was the woman willing herself upright and into the halls of power to be the voice of all those people who did not have the opportunity to be heard. By casting me as a victim, MoveOn took my multidimensional story, which compelled both democrats and republicans to support health care, and flattened it into a trope. I was getting sick of our messages conflicting.

“Do you want me to tell them you’re not doing the scene?” Ryan asked. I nodded. As Ryan disappeared to negotiate a better commercial, I looked in a mirror at my eyes that were puffy from crying. A chuckle escaped. Had I stood my ground, loudly, against the largest progressive organization in some strange woman’s house? I wiped away my tears and uncovered generations of women in my face and I looked strong.

Then I walked out to shoot the damn commercial.

Standing up for myself was almost as good as a full night’s sleep. I was free to fight. I entered the halls of Congress with new energy and conviction — and shared the stories of everyone I met on the road with their representatives. We rolled 20,000 health care stories — all stuffed in pill bottles — in a wheel barrel through the front doors of CIGNA’s corporate headquarters in Philadelphia. As MoveOn and a CIGNA PR executive debated in the lobby, armed guards escorted Ryan and me — the patient and the nurse — to a conference room for a frank, respectful discussion on health care reform. I went home without regret.

Dawn S. Smith meets with Rep. John Lewis about health care reform.

A month later, I was on the road — again. This time, I was with my mother for my one-week stay at the Cleveland Clinic. After months of appeals and petitions, I was in the place where medical miracles happened. As the epilepsy monitoring team hooked electrodes to my skull and body, I prayed for the most brutal shocks from my tumor, in the hopes that one of them would send an SOS through the wires and provide an answer. None of the bolts that ripped through my body over my week-long stay registered on the clinic’s machine. If my episodes were not epileptic or ictal in nature, what were they? My doctors believed my symptoms were rare, even for my brain tumor, and suggested neuromodulation: a pacemaker-like implant for my brain to control the pain. It was a new and expensive procedure, and certainly not a cure. For all I put my body through fighting to come to Ohio, there would be no answers this time. It hurt to walk out the doors of the Cleveland Clinic without a miracle. Even the first slap of snowy, Lake Erie wind across my face felt like an insult. The car seemed frozen in silence before Mom began to plot the next steps. I was empty… and I did not know how I was going to pay the following month’s health insurance payment. My clients were only coming through by referral. I had long stopped searching for them with any vigor because the tumor was starting to affect the one thing I have done since I was a little girl: writing.

“I can skip the house payment,” my mother’s voice cracked when I called to announce I was cancelling my health insurance. I spent over a decade in a painful medical odyssey with no end in sight. The time had come to rest and regroup. The social worker who CIGNA assigned to me even seemed surprised and concerned. “Are you sure?” she asked. I told her I would be fine, hung up the phone, and started my descent into depression.

Days, then months passed. As my tumor grew — and grew angrier — so did I. The time alone gave me time to sit inside my mind, replaying my past like a movie. Everything and everyone was a suspect in my downfall. My entrance into the world forced my mother to abandon her career in art. Her sacrifice propelled and chased me all my life. So when my doctor told me there was a spot on my brain, it was my writing career — not my life — that I feared losing the most. I did not want to lose my dreams, like my mom. Now, curled in ball — mixing up words and phone numbers — I blamed her simply for making a baby with a man with a family history of brain tumors. I saved the worst whips for myself. I would lash myself hard for not remembering words that used to roll off my tongue and commanded my body to move like a general, and curse when it did not obey.

My body’s lack of response was not a failure of strength or faith. Pain creates a misfiring of neurons in a portion of the brain, which can lead to damage and depression. Once pain becomes an emotional paralytic, according the Journal of Neuroscience, crawling out of its grips is almost impossible. At least 50% of patients with intractable pain contemplate suicide. After years of being the strong, black woman, my mood began to mirror the cyclical nature of my symptoms. I felt dangerously hopeless when I was stuck on the couch, and then hungry to take on the world when my body allowed. That I had not walked away from my life was a miracle.

After months of appeals, I was approved for disability and much-needed Medicare. I ignored my doctor’s warnings and demanded that he blast the brain tumor with radiation. Someone had to try to fix me. Poking the area with radiation made my symptoms even more volatile.

The couch was becoming a very comfortable tomb. I rebuffed my mom’s calls to sit on the front steps to soak in some sunshine. What if I fall? A Pitbull music video, of all things, had me craving the sunshine so much that I began to feel imaginary rays burn my cheeks. Had the radiation burned my talent, my dreams, my pretty? I wandered to the mirror. Somewhere, in the eyes darkened from radiation, was a glimmer of someone I still wanted to be. All I had to do is reach into myself and grab her, hold on for dear life… and grow into her. “Look at you,” I said to myself as I placed my hands on the cheeks in my reflection. “Look at you. I am still here.”

My symptoms had separated me from life and I was ready to make contact with her again. Words like “some day” and “tomorrow” were offensive to me. If there was something new to experience, I longed to dive into it right now. Every step into the sunlight felt like a baptism. New food felt like gifts on my lips. I was fighting to savor every moment and tuck them in my memory box because, at any moment, a shock could put me back on the couch again. In a moment of daring and desperation while on a short vacation in Florida, I hopped on a bike for the first time in decades and weeble-wobbled a few yards on the beach. I flopped off the bike as if I won the Tour de France. In the grains of sand I etched, “I am still here.”

Dawn writes “I Am Still Here” in the sand.

On the Friday before Mother’s Day, I attempted to end my life.

My day started with a drive to the doctor’s office, one I normally wouldn’t take myself, when a bolt hit my brain just as I approached Peachtree Street. Everything in the car was foreign to me. The light turned green. Horns blared from the cars behind me. But I didn’t know what to do. Slowly, my left hand rose to my steering wheel and guided my car onto the busiest street in Atlanta where my doctor’s office sat a few blocks away.

I never recovered my memories of my doctor’s appointment or ride home.

I reached the dangerous point where I had begun to hate my pain more than I loved myself. Thoughts of escaping my pain rushed into every crack in my mind, and took me under. I scribbled my bank login and a simple message to my mom: “I’m sorry. I’m so tired.” A mixture of pain pills and anti-epileptics carried me away. As my heart started to thump heavier and faster, I remembered: “It’s Mother’s Day Weekend.” Visions of my mom planning my funeral filled me with guilt, so I called her name. She revived me with water, ham sandwiches, and a simple challenge: to live one day at a time and write through my pain sentence-by-sentence.

I wrote about you.

No, this isn’t the story you hoped I’d write for myself when you saw me reading at Mommy’s feet. I was waiting for something… a healing, or victory for a testimony. I was waiting to become like the woman who swam with snakes. You and mom taught me better, and now I am teaching myself. As you watch from the heavens–cheering for me as I affirm my magic, and weeping as I stumble — you see me get up each morning. Even the nightmares are shaping me into the woman I hope to become.

That is the lesson I am adding to our family canon.

Every day, I step into dark waters and am reminded that I am human and a heroine. I am the woman who swims with snakes. My head is not yet bowed.

I am still here.

I’m still swimming.

Dawn S. Smith

Dawn S. Smith (@novemberdawn) is a freelance writer and playwright of the choreoplay “Sunshine for a Midnight Weary.” Atlanta is where is was born and raised. Kentucky is where she spends most of her days.

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