What Happens When You Don't Have a Safety Net?

by Echo Brown



I try not to think about drowning. Failing kidneys. Finding a donor. Thousands of dollars in medical debt. My family trapped in an endless cycle of poverty, addiction, and mental illness. My fledging career as a Black artist in America. The looming threat of COVID, which was supposed to be over by now. Whether I will live to see another year on dialysis.


I focus on the mechanics of staying afloat. A singular goal propels me forward: reaching the shoreline, where comfort and stability reside. No one in my family has ever stood on land before. The tide rises bringing more problems that are mine alone. Night falls, and I wonder how long God is going to watch me flail in troubled waters.


Paris, France – March 2020


Where God should have been, there was only a cat, Baba Baby, my black and white tuxedo beauty. I wanted to feed him, but I couldn’t activate my body. Neither he nor I had eaten since the lockdown started. Always patient, he laid quietly by my side, occasionally peeking his head up to see if I was finally waking.


Standing was no longer an option. I rolled off the side of the bed, crawling to the kitchen like a wounded animal. I opened a can of Purina, dumped it on a saucer, and laid on the kitchen floor as Baba ravenously ate his first meal in three days. Why was I so sick? This did not feel like a normal Lupus flare.


My decline toward death was swift. I began throwing up green bile. I stopped peeing. My feet and ankles swelled. I coughed up fluid trapped in my lungs. My body was emaciated after losing twenty pounds in a week. I looked in the mirror and saw a ghost, a shell of my former, vibrant self.


A cloud of fog carried me to the hospital, which is the only way I can describe my state of mind. I hung by a thread to this world, while one foot was already in the other. “One or two more days. Three max and that’s it,” a doctor with a thick, beautiful French accent conveyed. The weight of his words rattled my sense of immortality. Wouldn’t I always be here? Wasn’t I eternal like the mountains and the sea?


Kidney failure due to Lupus was my official diagnosis. An autoimmune disease that can attack any organ in the body, Lupus is prone to going after the kidneys. Ten to thirty percent of people with lupus develop kidney failure. Selena Gomez, a high-profile lupus patient, famously received a kidney transplant from a close friend at only twenty-eight years old.


Not all of us can be Selena. What chance did I stand at surviving this with no money, resources, or family within reach—all during a global pandemic?


My faith buckled. I have never been religious, but have always believed in a higher power that was working in my favor. I felt forsaken. Betrayed. I had overcome every obstacle and answered every call and here I was demolished, boiled down to a shred of my former self. Without my strength and clarity of purpose, who was I? A thousand broken pieces of ego lay scattered on the floor of that hospital room. My psyche did Jumping Jacks around my dying body. I watched from the ceiling, empty and detached.


I was numb when the doctors put the first catheter in my inner thigh, an access point for dialysis. It hurt like hell, but I have learned from a lifetime of trauma how to shut myself down in a crisis. My consciousness separated itself from the physical pain of the procedures. I felt sorry for my body, now shriveled and utterly defeated.


The second catheter hurt less. The first one malfunctioned and could not sustain dialysis treatments. My blood, thick and clotting, kept getting caught in the tubes of the device. When the same thing happened to the second catheter (also in my thigh), the doctors opted for a third one, this time in my chest. I was transported to another hospital for the procedure, where a chest catheter specialist worked.


I awoke from the surgery, groggy and disoriented. My throat was sore and I was afraid to bend my head down for fear that I might break the catheter, which is inserted in a vein in the neck. I sat in a wheelchair in the operating room for two hours waiting for the ambulance to come back and get me. Eventually, a nurse appeared, a look of concern smearing her face. “What’s wrong?” I asked? “Is something wrong?”


I am stunned when she tells me the ambulance drivers are requesting payment to take me back to the first hospital where all my belongings are. They don’t believe a foreigner with no medical insurance in France will pay. I never signed up for health insurance given the administrative difficulties of obtaining coverage as an immigrant. It can take years before being allowed into France’s coveted national healthcare system.


“Gentlemen please,” I begged. “They didn’t tell me I needed money. I left my wallet at the other hospital, but I can pay you when I get there. Je suis Américaine (I am American). Please don’t leave me here.” I leaned into my American privilege to assure them that although I was Black, I was privileged. I embarrassingly waved the banner of American prestige to try and save myself.


After almost three years in France, I understood the complexity of race in the country. Unlike Americans, the French are quick to deny they have a problem with race, yet just like America, it infiltrates all aspects of French society. Race often determines where you can live, what kind of job you can get, and how you are treated in circumstances where you may not have your wallet. I once walked into a tourist store near the Notre Dame and asked the clerk in English for a price check on a particular item. As soon as he heard me speak English, he remarked, “Oh! You are American! You should just walk around speaking English loudly so everyone knows.” He was implying that if I wanted to be treated well in France, I needed to let others know I wasn’t just Black, but American.


I took his advice when it mattered most, but it wasn’t enough. The paramedics left, unsympathetic and uncaring. Both the nurse and I were flabbergasted. She wheeled me to an empty room and told me I could stay for the night, but I wanted to go “home.” She suggested an UBER or taxi.


When the driver appeared, the nurse wheeled me outside in freezing weather. I was wearing only a hospital gown and plastic slippers. The driver, warm and friendly said, “good evening Madame,” and I lost it. The dam I had been building broke. I sobbed, wailed, exploded under the pressure of what was happening to me. He handed me a tissue and kept his eyes on the road, unsure how to console a crying Black woman, as if I was a different species. He dropped me at the front entrance and I hobbled back to my room alone, broken.


The agony on my face must have been palpable. The medical technician that came to take me to dialysis the next day stopped dead in his tracks. “Oh,” he said. He was a short, Black Caribbean man who always whistled when entering a room. “Are you ok Madame?” He asked concernedly. “Do I look ok?”


He began clacking his tongue while unlocking the wheels of my bed. “Don’t want you to worry Madame. Gonna be ok Madame. All gonna be ok.” Something about the tone of his voice called me out of the despair that was sitting on top of me. I looked over at him and smiled. “Can I pray for you?” he asked softly. “God is with you,” he said. I started crying and asked, “How do you know?”


“Because I can see him standing right next to you.” I don’t know what he saw, but I trusted him. He reminded me of home. He felt like family and called me “sister.” He grabbed my hand, closed his eyes, and began to pray in French with such conviction I started to believe maybe God was in the room. Here was the almighty, after the most challenging battle of my life with a message: keep going. Here was God telling me I would rise from the dead.


Two weeks later I walked out of that hospital, boarded a plane, and flew home to the United States of America.


The mythology of America is magnificent. A dollar and a dream can take you to the top. All you have to do is work hard and believe. Anybody can make it here, except those who can’t. The barriers are invisible and cleverly constructed to stop just the right people. America is the great Houdini, constantly concealing the truth of how the machine swallows some of us whole. The myth works because we all buy into it, despite evidence to the contrary. The only way to live within this paradox is to put on blinders of hate, ignorance, apathy or confusion.


No one person is responsible. It’s systematic. Many drown simply because they don’t have a safety net to catch them when life’s infrastructure collapses. Perhaps that’s the biggest lesson from COVID: that so many of us are close to the edge.


California – April 2020


I had no choice but to exist in the present moment. Now, I’m driving to dialysis. My blood is pouring out of my body into plastic tubes. It feels so warm. I am lightheaded and weak after treatment, but I still have to drive myself home. I take it slow to be safe. I need food. There’s nothing in the fridge. I order Ethiopian again for the third night in a row. The lentils are packed with potassium. So are the greens, but what else am I supposed to eat? I’m too tired to grocery shop or cook. I shovel a handful of pills into my mouth. The steroids are the worst of all. They make me angry and aggressive and distort the fat deposits in my body. Yesterday, I looked down at my thighs and saw two new large bulges of fat. The bulges disappear a few hours later. I am freaked out, but too exhausted to panic. The sun is still out, which feels like a burden. If it was cold and dark, at least I could be miserable in peace. It’s only 7pm, but I go to sleep anyways.


No one in my family could travel to California. My baby brother had died of a fentanyl overdose two months earlier and it rocked us to our cores. He was only 30 years old. My brother’s was the first dead body I saw in my life. I kept wondering where his spirit went. I spend hours thinking about what I would say to him if I could see him one more time. He felt unloved his entire life, unable to see how we absolutely adored and cared for him. “There was never a day, hour, or moment that I didn’t love you.” I hope he knows now.


My mother was torn apart by almost losing two kids in one year. She called me incessantly to make sure I was still here. Neither of my parents have money, and my mother has never even been on a plane. They both have serious health issues including diabetes, COPD, emphysema, heart stints, strokes, and asthma. A trip to California from Ohio would simply not be possible. My other brother, Rone, was incarcerated at the time.


So when I started struggling with dialysis, I had to deal with it alone. Dialysis can cause an imbalance of electrolytes in the body and trigger chemical shifts in the brain. I didn’t know that at the time. What I knew is that I didn’t feel right. My cognitive function started to decrease significantly. I had trouble reading and comprehending basic text. The words appeared to be random strings of letters with no connection to each other. I stopped sleeping. I became paranoid and confused.


My doctor told me not to worry. Those are not side effects of dialysis. He said I must be imagining things. I started to wonder if it was the onset of schizophrenia, which runs in my family. My mother is schizophrenic, so were both my brothers. I have suffered through many traumas in my life and have personally dealt with mental illness, mainly depression, but I have never felt so internally disturbed. I couldn’t control my racing thoughts.


I called an emergency help line. I didn’t know what else to do. The operator told me her next appointment was three weeks away. I was silent then started crying. “I don’t know what’s happening to me,” I said. She stayed on the phone with me for an hour until her and a supervisor were able to find an appointment in three days.


I took myself off dialysis for the rest of the week. It was the best decision I could have made. Almost immediately, my mind stabilized and I felt like myself again. I demanded the doctor make changes to my treatment. I complained until the issue was resolved. What we realized is that I can’t tolerate high blood flow rates, which is how quickly the blood is pulled from the body for cleaning. I also don’t need to have fluid removed during treatment since my kidneys retained that function. Now, I feel relatively myself on dialysis. It was much scarier definitely to lose my mind than lose my body. I have renewed compassion for the millions who face these struggles every day. There is no grounding in reality without a balanced mind.


I wonder what might have happened to me had I not listened to my own internal voice. The clearest lesson I have learned here is to be persistent when it comes to your health, especially as a Black woman. There are countless testimonies of healthcare providers overlooking the pain of Black women. I implore you to not be silent. Now I fight all the time with nurses, doctors, and medical technicians. Call me Black Karen. Your voice must be loud and piercing otherwise they can’t hear you when you say it hurts.


After three months, I was declared to be in end stage kidney failure. I only had about 11% functionality left in my kidneys. I’m down to 8% now. I would need a transplant. There is only one place to go when you are fighting for your life: home to the people that love you. I drove across the country to Cleveland with all my belongings and my cat, Baba Baby. I begged strangers in Paris Facebook groups to fly him to the States. As soon as Baba heard me, he started meowing wildly. “Sweet boy,” I said. “I missed you so much.”


I’ll never forget the look in my parent’s eyes when I walked up the driveway, battered, but not defeated. “Ecka back,” my mother said. “She done come back to us.” They folded me right back into the nest I had tried to burn all those years ago. Only home can make you feel like that, drenched at once in both an undying past and a hallowed moment of reintroduction and renewal. I spent most of my young adulthood running from Cleveland only to come full circle. No matter where I go in the world, I will always be a Buckeye and the Land will always be my home.


I thought I had mastered the waves. I thought I was magic for learning how to breathe under water, but no one can swim forever. Standing at the threshold of death should be the time when rest is finally granted, unless you come from nothing. Then you must not only swim for your life, but also pull along the ones that fall behind. It’s much easier to accept your own submersion than it is to watch loved ones be swallowed by the tide. The fight for survival is never just about you, but is also for those that are drowning with you.



Cleveland – August 2020


My youngest brother’s death eviscerated my remaining brother, Rone. He watched the funeral from prison. When he was released, he spiraled down a tunnel of self-destruction.


The first time I saw him after returning to Cleveland, he was ranting in front of a stopped semi-truck on a busy street. Up until that point, I hadn’t seen or talked to Rone in three years. I hadn’t had the emotional reserves to help carry his suffering, like I always do. I have financially and emotionally supported my brothers ever since I started working after college.


By the time I got to him, traffic was stopped on both sides of the street. The trucker honked desperately, but my brother continued his rampage, totally unaware of the looming danger. “Yea,” he yelled. “Fuck the world. It’s mayhem now. My brother gone.” He was lawless and empty, totally disconnected from his sanity and reality.


I did what I always do. I put on my brave knight costume and tried to save him. I made a plan. I started taking him to AA meetings every night. Even on the days when I felt sick from treatment, I showed up.


I thought Rone had finally turned a corner and was ready to make a serious change in his life, but his old patterns soon re-emerged. He stopped wanting to attend meetings. One night he asked me to drop him off at a friend’s house instead. I obliged if he agreed to come to a doctor’s appointment at the Cleveland Clinic the next day. He had a series of health issues I was trying to help him address including: emerging kidney problems, decreased functionality in his right hand (from a gunshot wound), rotting teeth, and respiratory problems from years of smoking.


A simple appointment turned into mayhem. An outburst prompted a police call, and despite my best efforts to soothe him, he grew agitated and was violently arrested. Most cops are not equipped to handle mental health emergencies. That lack of training can result in the fatalities we see regularly on the news. A Black man couldn’t possibly be mentally ill and need help. He’s just a dangerous animal that has to be put down for public safety.


My brother is assigned to a mental health court with a sympathetic judge who decides to send him to an inpatient treatment facility rather than back to prison. His future looks hopeful until he catches COVID while awaiting transport in an unbelievable twist of fate. Now, he must remain in jail until his symptoms subside. The jail where he is currently incarcerated has had a slew of inmate deaths in recent years. My family and I are left to worry if he will be next. The hits just keep coming. Additionally, the number of COVID related carceral deaths in the United States has been astronomical, another insufferable cruelty of the pandemic.


Returning to Cleveland was nothing like I imagined. I had been globe-trotting for so long, I forgot what this madness was like. A new path unfolds before me striking fear where there was once naive courage. If I can be single, unsupported, and on dialysis at 36 while my family crumbles, what will the rest of my life look like? Will I be able to stand it?


For now, I watch the shoreline from a distance and dream of what it will be like to finally stand on land. My imagination, full of alternate possibilities that may or may not become reality, does not disappoint.


We are not exactly magic, but we have truly learned to breathe under water. That is the legacy of Black people in America.


These are unprecedent times. If ever there were a time to cry out for mercy—for a miracle—it is now. So many are leaving and so many are suffering. I know I am not alone in struggling to make sense of what is happening in the world.

This is really an SOS call to the great creator. Please don’t let us drown. Send help and have mercy on our souls. May you hear our call and be with us. May the daybreak come soon.


Echo would like to publish this piece in a national newspaper or magazine. If you have contacts, suggestions, or ideas about how to go about doing that, email echo@echobrown.com

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Updated: May 3

What it's Like to Live on a Machine

by Echo Brown



It begins with the catheter, a device surgically implanted in your chest. Two tubes dangle awkwardly over your right breast. Scars form at the top of the tubes, the skin trying to heal a perpetual, open wound. The grey machine, cold and austere, purrs quietly at your side, waiting to clean toxins from your blood that your kidneys, functioning at only 11%, are no longer capable of removing. Now, only the device and the machine can keep you alive.

Your blood, beet red and warm, takes this voyage through an elaborate maze of plastic tubes, pipes, and dialyzers three times a week. It is more than a journey, it’s a rescue mission.


This is dialysis. This is what it’s like to live on a machine.


The first time I saw someone post on Facebook about quitting dialysis, I was shocked. “I just can’t do it anymore,” the poster declared. “Thank you to all the dialysis warriors out there. Your support and encouragement kept me going. I don’t know how much time I have left, but I’m going to live it to the fullest.” I kept re-reading his words trying to figure out how a life-saving treatment could be so terrible, you would rather choose death. It didn’t take long for me to understand the root of his despair.


My own life was in shambles. I was a skeleton, weighing only one hundred pounds. I couldn’t keep food down since starting treatment a month earlier. None of my clothes fit and most of my hair had fallen out. I was chronically ill and looked gaunt, sunken. I felt like a shell of my former vibrant self. The one who had been living a full life in Paris, France prior to my kidneys failing. My days then consisted of yoga, swimming, dating cute boys, writing, and planning for a future that has since slipped into the shadows.


Now, I struggled to do basic life tasks like cooking, shopping, and cleaning. Standing for long periods of time, even just to shower, was impossible without bracing myself. The first time I went grocery shopping after returning to the United States, I had to lean against walls around the store to keep from passing out. Dirty dishes piled up in my apartment, clothes were strewn about, and discarded Kleenex, from coughing up fluid that had accumulated in my lungs, covered various surfaces. It was filth, but I had no energy to clean and I had no one to help me.


I thought dialysis was supposed to bring me back to life, allowing me to live a normal life until I find a transplant, but it doesn’t work like that in reality. Dialysis keeps you alive, but sucks every shred of normalcy from the fabric of your life. Hanging out with friends, eating what you want and traveling evaporate into the corridors of memory. Your life becomes partial, limited.


There are other complications, psychological side effects that are rarely discussed. When I first started experiencing mental disorientation, I thought it was the onset of schizophrenia, which runs in my family.


Two months into treatment, a fogginess, unlike anything I’ve ever experienced, descended upon my mind. I became confused. Significant gaps in my thinking increased. I almost got into an accident when my brain stopped working as I was making a right turn onto a busy street. The other driver, frustrated and bewildered, honked aggressively snapping me out of the fog.


I stopped sleeping and was increasingly paranoid. I accused my landlord of running a money laundering scheme after I misunderstood something he explained in the lease. I assumed another landlord was trying to kill me for really no reason other than his eyes “looked suspicious” to me. I believed whole heartedly that I was in danger. I stood on the edge of a psychotic break, calling an emergency helpline one night when I couldn’t control my racing thoughts.


My doctor said my symptoms were unrelated to dialysis and it was probably my imagination. Finding doctors and nurses that are genuinely invested in your quality of life, not just hooking you up to a machine like a test tube organism, is a major hurdle. I have had to fight repeatedly with medical professionals who don’t like how involved I am in my own treatment. It’s less threatening when the patient sits quietly and doesn’t ask questions.

I became desperate, stopping treatment altogether for a week. The balance of my mind returned and my sleep stabilized. I couldn’t believe it. Why had no one warned me about these side effects? Why was I left to figure everything out on my own?


Physical and mental deterioration are only a portion of the challenges faced over the course of treatment. There is also the financial burden. The United States covers 80% of medical expenses for end state kidney disease leaving the remaining 20% to the patient. It adds up quickly. My medical bills are around $2000 per month for dialysis and other expenses. I expect to be 100K+ in debt by the end of this journey. Even if I had savings, they would be gone by now. Anyone who does not believe there is a health crisis in the United States should glance through the numerous GoFundMe’s dedicated to healthcare. No one should have to launch a fundraising campaign just to stay alive.


The hardest part of the entire experience has been dealing with it all on my own. Having someone to help you cook, clean, and shop is critical for recovery, but many face these challenges alone. I moved home to Cleveland at the beginning of treatment, but my family is mostly unable to help me due to lack of resources and their own complex health issues. Even here, during the toughest battle of my life, no rest has been granted. I must remain standing.


The statistics provide no solace reminding me that my chances of surviving this are slim. Almost half of dialysis patients will die within five years of beginning treatment. (I’ve been on it for a year). Despite the need, living donor transplants are rare. Living kidneys last ten to fifteen years longer than kidneys from deceased donors. For perspective, about twenty thousand kidney transplants take place each year. Around 13,000 come from deceased donors and 5,000 come from living donors. Around 5,000 people die each year waiting on a transplant and another 4,000 become ineligible due to illness. The odds of survival without a transplant are low. Dire need is an understatement in a situation like this.


If I stop to think about what I’m up against, I’ll dissolve under the pressure. I remind myself that so much of this is out of my control. I lay my hope for a better life on top of the bills in the corner. Maybe mine is not a life that will be lived into the sunset after all. Or maybe it is. Only forces far greater than me can say for certain.


I wonder what happened to the Facebook poster. I haven’t seen any posts from him in months. Maybe he got tired of being poked by needles, maybe the catheter in his chest clonked out, or maybe he was also doing it all on his own, like me, and it was more than he could stand.


Whatever his reasons, I fully understand now. For me, and many others on dialysis, there is no life without quality of life. Unfortunately, that’s the first thing you lose when beginning treatment and in the end it’s the only thing worth the fight.


My blood returns home after the long journey. The machine roars to a stop, waiting to be cleaned for the next patient. The circle of life in a dialysis unit. The nurse listens to my heartbeat one more time, checking for irregularities. “All good,” she says. “See you on Wednesday.” My head drops at the thought of having to return. “Hey,” the nurse calls from behind me. “Keep your head up. You hear me? You will rise again.” I smile weakly before disappearing into the emptiness of the hallway.


Email echo@echobrown.com to contact Echo.

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