Melissa Maldonado-Salcedo //
“A writer….must believe that whatever happens to him is an instrument…This is even stronger in the case of the artist that happens, including humiliations. embarrassments, misfortunes, all has been given like clay, like material for one’s art.”
-Jorge Luis Borges
This story offers a snapshot into my head to provide a humanistic narrative to my MRIs. I offer another perspective on my brain and join Eric Maisel in questioning my pain. He explains, “Countless infants are born into a social class, ethnic group, religious group, a family of origin, or another set of circumstances or environmental factors in which their native intelligence either counts for little or is held as negative” (Maisel 2020: 1.) He highlights that when you think, act, and feel different from those around you will inevitably be hurt. While I like to lay low and not draw attention to myself, I find it hard to fit in (for a prolonged period.) I feel dishonest and like a spy. I am not unstable per se, but there is a level of unpredictability that I live with every day that forces me to adapt every part of my being to an accommodating world. Only now am I learning how to measure my words and actions because I have learned the power of pausing and silences. I do not like secrets. Perhaps this is why I overshare and place a high premium on transparency and communication, given my murky origin stories. The professional implications are profound too.
In one of the first sessions with my therapist, he asked me about my dad since I ranted about my (beloved) mother. I did not notice I had not spoken about him, but he was shocked when I replied, “he is my best friend.” My father was born with a degenerative condition where he progressively loses his eyesight (retinitis pigmentosa.) He is legally blind but he sees shadows. His ability to memorize the spaces he knows despite being unable to see them. Jorge Luis Borges had the same condition, and he describes his way of experiencing the world in the following way:
“The world of the blind is not the night that people imagine. I should say that I am speaking for myself, my father, and my grandmother, whom both died blind–blind, laughing, and brave as I also hope to die. For example, they inherited many things–blindness, but one does not inherit courage. I know they were brave.”
I got used to being called “different” and did not care to check the corresponding boxes to prove it. I am forever fascinated with the codified language that has been used to describe me (or my work.) The adjectives range from “artsy, quirky, kooky, eccentric, manly, an acquired taste, and passionate.” (Which in many ways describes my work because I cannot be divorced from it. When my parents put me in Catholic school, it was the first time I could blend into a group (even though I was not Catholic.) We all had to wear skirts (thanks to the uniform.) I was raised evangelical, and although I am now in active recovery from it, no one asked why I did not dress like everyone else, which was a common occurrence in public school. My “school clothes” consisted of my old “church clothes” (no matter how small they fit me or how ridiculous they looked.) My body did not feel like it belonged to me, so I could not adorn it to my liking (in public.) In many ways, I was dressed like a murguera. My attire for the circus called “The Church of God.”
When I read this framing by Borges, I thought about the man in my life with great vision, my dad. He is all heart, and I do not fear disability because of him. We are not disabled despite the impairments that limit us. My father worked as a taxi driver in the Lower East Side where we would play the world’s scariest game of “red light-green light.” He sold fruit from the back of a truck that he drove with me sitting shotgun. I remember that my feet barely touched the ground. I served as his eyes and indicated when the street light had changed colors. He drove down Avenue D, and I navigated. It was a great responsibility for a seven-year-old. However, I never thought that the parentification would present any real challenges to my life course. I resolved early in my life to be scrappy, self-sufficient, and successful meant that I had to hustle. It is not a coincidence that this message tends to underscore a lot of the public health discourse concerning us immunocompromised folk. We matter too.
I’ve got Funny Girl Problems
Comedian Chelsea Handler’s memoir, Life will be the death of me…and you too! (2009) centers on her quest to make sense of her childhood in the face of the Trump administration. Her need to be self-reflexive coincides with this moment in history because it proved to be triggering for her, although it was not initially clear as to why it was. She shares that she started to spiral and was emotionally overwhelmed by the feelings associated with Donald Trump’s electoral win, which had a lot to do with her childhood. When reflecting, she identified unresolved grief surrounding trauma that correlates with her parent’s “detached” parenting styles and her struggles with depression which were inextricable from her brother’s tragic death. She shares that this overwhelming grief “defined” her. While it also created a void within her that consumed her. Hence, she had to “dig deep” and come to “admit” her pain as a means of “beginning the process of relinquishing it.”
Handler notes that in her quest to understand her father and find empathy for him, she realized how people could be many different things to even the same person. She explains, “No person is just one thing. People can be filled with light and affection and be tortured and conning and dishonest. Happiness can coincide with great pain. One can lead while also following, the same way one can follow while also leading” (Handler 2019). Her words spoke to me because as Megan O’Rourke, in her quest to discover what was “wrong with her,” she explains, “One of the hardest things about being chronically ill is that most people find that what you’re going through is incomprehensible—if they believe you are going through it.” (O’Rourke 2013). So how do you convert non-believers to your pain?
Writing out of Academic Purgatory
As an anthropologist, even though I am no longer in the field, I embodied it. Its name was academic purgatory. I knew that the only way out of it was to write it out. After all, if everything can be a story, not everything is “sharable.” I am empathic. I am not suggesting that I have special powers or am a Medium or something of that sort. No, I just “feel” everything. I am learning how to manage this because after I defended my dissertation, I felt haunted by the memories of fieldwork. Then, one of my dearest friends, Juan, passed away. I would read my notes from the moments we spent together and our conversations which I recorded during his illness and rapid decline. I could not offer medical advice, but I wanted to tell his story. I found myself reading him into life after his death.
Weeks after Juan transitioned into the afterlife, I got shingles. I remember we were each other’s interviewers in many ways. It wasn’t that I could ask him questions and hear his stories without answering my questions and sharing my own stories of mischief and resilience. He knew me. He appreciated that my favorite empanadas were the ones he made when he also made his family recipe of “machacado” (a soup from Mendoza, Argentina.) What can the “narrative structure of storytelling” mean to people who are interested in knowing about different cultures? How can anthropologists use storytelling as a new way of engaging wider audiences” (Maggio 2014:103). He knew that I was not a fan of Shakira and rooted for Colombia during the world cup. He learned that I was expelled from two different seventh grades for being “sensitive” and “rebellious” while we were in the car going to pick up his teenage son. Even as I write this and remember him, my ears tear up, and I smile. I will never forget him because he will always be present with every memory of Argentina, family, and anthropology (which define me.)
Simply saying that I am a “highly emotional” person would be misleading. Interestingly it is not uncommon for me to have developed higher empathic abilities given my childhood, which gave me new meaning to Multiple Sclerosis. For example, “An empath’s body is different from other people’s … Our bodies are porous, so we absorb the positive and negative energies around us into our muscles, tissues, and organs. This can affect our health in many important ways…” (Orloff 2018:29). Whenever I used to get into a spat with my family, it would take me days to recover. After completing my Ph.D., it took me four years to recover from the emotional hangover left over after completing my Ph.D. Think about all that happens during this time frame, World Cups, the Olympics, and most starter marriages. Even though I started to get sick with debilitating pain, extreme fatigue, and pins and needles. However, I never attributed it to Multiple Sclerosis despite many of these symptoms aligning with the diagnosis.
Unfortunately, “Conventional health care has some serious deficiencies in helping sensitive people. I remember hearing Kanye West describe his bipolar disorder as his “superpower.” I get it. I feel this is why I found comfort in being in the world. Empaths are often misdiagnosed as hypochondriacs or neurotics, a frustrating way to be treated when you’re vulnerable and in need, or they are sent to a psychiatrist for a prescription for an antidepressant such as Prozac or anti-anxiety medications such as valium or Xanax.” While pharma is not recommended for empathic overload, I would seek anything that would slow down my thoughts, soothe my angst, and put me to sleep (Orloff 2019:30). “Autoimmunity” is a flawed concept. There is ambiguity even concerning the term because it is unclear if autoimmune dysfunction is the cause of the disease or simply a consequence (O’Rourke 2013).
I developed insomnia over the years, which made me feel that I never really rested, even if I managed to sleep. This would then present a level of confusion between what was a consequence of poor sleeping habits or that of Multiple sclerosis. Symptoms for both include extreme fatigue. I could not sleep because I would have recurring flashbacks to my childhood, old family fights, and abuse, which when I woke up, I felt as if I had fresh wounds. That is what trauma does, it haunts you, it lives with you. This is how I would start my days, reliving past childhood traumas. I realize this had to do with the stories I had recorded in my work. I would deeply feel their pain and see them in my own life in many ways.
While empathy may not necessarily give us a full sense of someone else’s experiences, it can lead us to take “prosocial strides to reduce their suffering.” Orloff references a study in Health Psychology that empathetic parents experience “compromised immunity and low-grade systemic inflammation from having to regularly deal with their children’s depression and upsets” (Orloff 2018:133). However, I did not know I could not keep the emotions I shared separately.
Don’t Sleep!
I live in my head. I can be messy, disorganized, and chaotic (like my room growing up.) However, adulting has meant that I crave schedules, lists, and routines to thrive. This love of order is because of my disorder. I fear forgetting, not understanding, I fear cognitive decline and not a wheelchair or blindness, which are all real possibilities that I reject. I am not saying that this describes nor does it correlate with identifying as an intellectual or academic, being “lost in thought.” They drown me, but I do not consider myself “brainy.” I don’t claim to be cerebral either. Sometimes, words escape me when feelings overwhelm me.
I am anxious. My thoughts are not all bad, but they can get dark…especially after midnight. What I mean is that I cannot stop thinking. This state is a blessing when I can create and apply these ideas and thoughts to my craft. However, ever so often, I have slipped off the edge. I go down a rabbit hole of interconnected thoughts trying to outrun each other. Nothing runs faster than a lie. It is exhausting and weathers away at my confidence and drive during my worst days. I find a way to laugh it off on my best days. I am coping if and when I can find a joke in these moments. I used to describe my default setting as existential dread. However, light can peek through and offer a generous sprinkle of optimism, and it can be found in a song, in a hug, in my son, in love with love. It is in me, in my heart, but I have to protect it.
I now manage my caffeine intake, which is hard because I am Colombian with a penchant for uppers and speed. My mind races, and whenever it is forced to slow down, I become disoriented and slightly “off.” However, one of the benefits of being middle-aged is your instinct to avoid risky behaviors. Your body warns you before making a wrong choice that you will regret the next day. For example, when I feel sluggish, all I have to do is wrinkle my nose and feel the internal scabs on a cold winter day to remind myself of the beauty of recovery. Now, it takes only two cups of coffee to keep me up all night…thinking. I remember what a hangover feels like now if I have an urge to drink. After all, I have lived long enough and have acquired sufficient tools to (re)interpret my past and engage in nocturnal debates with myself about all the things I could have done differently. For a long time, I could only aim to rest. I did not sleep.
I grew up in a very mannequin world where things were good and evil and had literal interpretations with corresponding bible verses in place of empirical facts. With the passing of the years, the percentage of black clothes that I buy and wear has surpassed the fifty-percent mark. This perhaps is why I was attracted to fluorescent and bright colors, but now, I have mastered shade. I have a new appreciation for timeless, classic, and vintage, perhaps because these styles can be more forgiving to change. The adage, a moment on the lips, a lifetime on the hips, now resonates deep in my body because my metabolism is the only part of me that will relentlessly slow down. Life should have taught you enough about reactions, karma, and consequences in your forties. These lessons sum up my thirties and the patterns I am invested in unlearning today. They felt like a crash course in regret, burning bridges, and survival. The science is out if I have genuinely learned these lessons. This uncertainty keeps me up at night.
While clinically, my official diagnosis is “general anxiety order.” The name says it all and yet nothing at the same time. I am generally anxious and mildly neurotic. It can also be a cultural thing (Maldonado-Salcedo 2017). Unofficially, it feels more like a personality issue. I always had trouble with authority, rules, and uniforms. I remember laying in the dark at night, listening to the voice of Casey Cassem counting down the top twenty hits of the week; the songs served as a soundtrack that let my imagination run wild. I thought about all the ways I could get off on technicalities and settle scores. I did not dream; instead, my memories would be like imperfect representations of what happened. Anxiety feels like you are watching a late movie, but it is based on your day, played by actors from the Sunday improv group of Schenectady. It takes way too much creative license. Your mistakes are exaggerated, and your triumphs are glossed over. Freud would suggest that I need to work out my family trauma. I tend to agree with psychoanalysis…most of the time.
My mother religiously watched Perry Mason and Charles Bronson’s “Death Wish” films on Saturdays. I would too, but with the enthusiasm of a future seeker of justice. After fourth grade, all my teachers conveyed a similar concern to my mother; in their “professional opinion,” I had an “attitude problem.” It was terrible, and this is when I understood the meaning of “subjectivity.” Culturally, it is believed that anxiety can be controlled like a switch. Medication has tried to manage it, but it simply numbed me. The screaming stopped but so did my ability to create. I spent the first year of the pandemic numb to the rapidly changing world around me. It allowed me to “hold” myself and everything together. My anthropological filter wonders how much of this angst is socialized too. Neurologically, a lot is happening in my brain. Socially, even more.
The Art of Life
I always knew I was different. I did not feel, process, or express myself like anyone else I knew growing up. I felt like an alien but not like Alf or Mork, more like E.T. It was a feeling of displacement and a heightened sense of difference that kept me from connecting with others. It was hard for my mother to understand me because she had limitations that created a barrier for communication and understanding in my youth. She called it “Americanization,” and I understood it as a fundamental culture clash. Granted, she was raised on negative reinforcement, and so her way of having us “do better” was to compare us to our thinner and fake(r) cousins. We did not inhibit the same reality for a very long time. I was never “I will do it behind your back” type of kid, even in my most rebellious stage. I eloped not because I wanted to hide it from her but because I did not want her “discontent” to ruin my day. I told her this when I shared the news. She started to cry, yell, and throw herself on the floor. Eighteen years later, I am convinced she likes my husband more.
The stress of keeping up with a lie or suppressing my feelings was always a daunting task. I am a face maker who wears her heart on her sleeve. I tease my mother now that she was training us to be assassins because she would pressure my sister and me never to express our feelings in public. She believed tears would expose our weaknesses. This was part of her feminist parenting. She would “discipline” me on the second floor of the church. While the congregation was in prayer, I would be “physically” disciplined upstairs for having expressed an opinion (no matter how empirical and evidence-based it was) against the church, its leaders, and even God. While she was big on corporal punishment, it did not change that I was small, and she made me feel it.
However, this is not a rare occurrence for many Latino moms of the era. After all, they invented their martial arts, with moves that transcend and cut across our community’s diversity. It does not matter if you grew up in Venezuela or Peru or were raised by Puerto Rican or Colombian parents in the United States. It’s one of the few pan-Latino phenomenons that hold throughout the hemisphere. Latino kids fear fuetazos, and cocotazos. Their weapons of choice? Chancletas (slippers) and belts.
Growing up, my mother asked me every day when I got back home from school if I had taken candy from strangers. When I got older, I realized what she was trying to figure out. In a fit of frustration and a gross lapse of judgment, she blurted what I knew she truly wanted to know, “why do you behave the way you do?” She had returned from yet another parent-teacher conference. Although she was not English proficient, my teachers knew how to communicate their frustration to my mother, effectively. I excelled in math, reading, and social studies. However, the problem was my “conduct.” I was impulsive, contrarian, curious, and determined. After third grade, I was simply a problem. I am not sure if my mother’s question broke me or just my heart. It certainly hardened me. However, it started to guide my inside voice, screaming at me whenever I doubted myself and everything.
My mother was diagnosed with obsessive-compulsive disorder later in life. She was controlling rigidly, which compelled me to think of all the ways I could get away with something. I loved to move the goal post. Her excessive cleaning made our house felt antiseptic and institutional. Our neighbors admired how “clean” we kept our home, and they assumed our souls and hands were too. This could be a direct result of being told from the moment I took my first breath that I was a sinner of the OG kind.
Additionally, a predetermined, non-consensual price was paid for my sins in one of the most public and cruelest executions. So I was born into guilt, and because I was a woman, I would learn to internalize it and allow it to consume my thoughts and, eventually, me. These thoughts are loudest whenever I try to close my eyes to rest. The intergenerational dirt we had on us could not be washed away with bleach or the blood of Jesus. These stains were not decorative, they spotted my brain.
Even though we attended church every day except Wednesdays and twice on Sundays; on Saturdays, we took the church to the streets, giving out tracks and knocking on doors to inform people that if they did not repent, they would burn in hell…eternally because God loved them. My mother framed our evangelizing ventures as life-or-death work. I was not tall enough to go on a roller coaster or old enough to watch a PG13 film. New York City public housing seemed to trigger my mother’s colonial impulses. Latino Pentecostals believe they are soldiers in God’s army, and my mother was his star general, and it is time for a revolution.
Will it be Televised? Closing Thoughts on New Directions
When Peacock television announced that it would reboot the Real Housewives of Miami, I was elated. Their hiatus from the small screen was a loss to my television routine. The last time it was on primetime television, I was still a doctoral student teaching Latino studies at Hunter College. I had secured funding for a pre-dissertation research grant that would take me to return to Miami and follow up on some of my previous work on Latin America’s capital. I loved the drama, and no matter how over the top their antics were on the show, I could not stop watching. Sure it fueled many stereotypes that Latina women are “really” like their telenovela parodies. I ended up not going because I was in a dramatic feud with my sisters-in-law because of bochinche (gossip.) We were at war, and the dinner table would be a battle: my words, landmines.
Maisel, in his quest to understand “why smart people hurt,” notes that, “…To avoid the anxiety that we half-know is coming, we do not go near thinking, we veer off in another direction as we approach a thinking task, we begin to think and almost immediately get up and do something else, or we stay put but send our mind somewhere, somewhere easier on the system.” Does this explain my obsession with court TV and reality television? It soothes my mind (briefly.) I have been known to find a way to make entertainment an intellectual exercise. But then, “Very often, we shy away from thinking together. Like the person who is afraid of flying and steers clear of airports, a person made anxious by thinking may simply steer off it” (84). In many ways, this is my year on Prozac (an antidepressant) and Buspar (an antianxiety medication.) But if I cannot think, I cannot feel, and then I cannot create. In my mind, I hope my stories help shift the focus from resilience to creativity in understanding how we make meaning of the bad, the sad, and the scary because (and not despite) our anxious minds. We create.
“My Myelin” by Melissa Maldonado-Salcedo
Artist Statement:
Painting, Canvas, 11×20
Multiple Sclerosis is when your immune system attacks the myelin sheath, which are the cells that produce and maintain it. It causes inflammation and injury to the sheath and ultimately to the surrounding nerve fibers it. The scarring is sclerosis…and its multiples. The white spots on the brain are called Myelin. I titled this piece Myelin, which is me converting this medical into a verb. I am trying to express what it makes me feel and what it does to my entire self as it is worked out in my brain. It attacks the brain and seminal cord. The damage makes it harder for messages to get through, and this explains the innumerable symptoms that make you feel as if “your body is gaslighting you” (Maldonado-Salcedo 2020). However, when I stare at this painting enough, I can see Juan, my family, my story, my mind.
The painting is an illness narrative. It reflects how I imagine the myelin patterns in my brain, given my progressive condition. When I was diagnosed with multiple sclerosis, an MRI was one of the “confirmation” tests. On it, the white spots that freckled my brain would indicate lesions that confirmed my diagnosis. The more white spots on it suggested that the disease was progressing. I spent hours looking at it, knowing that it held vital information about my health and my sense of self. I started to think of each spot as a memory that began to fade, so I imagined what story each held and ways to retain and revise them. Yet, my account is not made up of only discursive data and feelings. Each lesion correlates with an evaporating moment, an embodied memory that left its mark on me (forever.) I include traditional Colombian coastal artisanal patterns to represent my heritage. I embed memories in what I believe to be a spiderweb that turns into a maze, which entangles my mind in restless ideas and disorienting feelings.
Endnotes
1The enslaved population from the nineteenth century would dress in aristocratic garb, but it was tattered, like me. In Argentina, whenever murga is performed, part of the costumes consists of all tattered clothes representing the aristocrats’ hand-me-downs (patrons) who owned them (Martin 2017). According to, “Murga bears the scars of historical marginalization, with many in Argentine society continuing to associate with transgression and delinquency” (Stansworth 2019).
2 An urban idiom from my generation was “Don’t Sleep!” which usually refers to someone or something. According to the free dictionary, it’s a slang saying that means, “don’t fail to appreciate or ignore the significance of something or someone.”
References
Borges, J. L. (2009). Seven Nights. New Directions.
Handler, C. (2020). Life Will Be The Death of Me….and You Too! Dial Press Trade.
Maggio, R. (2014). The Anthropology of storytelling and the storytelling of Anthropology. Journal of Comparative Research in Anthropology and Sociology, Vol. 5(no. 2), 89-106.
Maisel, E. (2020). Why Smart People Hurt: A Guide For The Right, The Sensitive, and The Creative. Conari Press.
Maldonado, M. (2021). I’m not Lazy, I’m Ill. Lady Science. https://www.ladyscience.com/essays/im-not-lazy-im-ill-multiple-sclerosis-culture-2021
Maldonado-Salcedo, M. (2014). Argentinidad or Neurosis. Clio Psyche: Understanding of ‘Why’ of Culture, Current Events, History, and Society, special issue on Psychoanalytic Anthropology(Volume 20: Number 4).
Orloff, J. (2018). The Empath’s Survival Guide: Life Strategies for Sensitive People. Sounds True.
O’Rourke, M. (2013, August 13). What’s Wrong With Me? The New Yorker. https://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
Stansworth, K. (2019). Forget Tango: the murga of Buenos Aires is a riot of sequins and salvation. The Guardian. https://www.theguardian.com/cities/2019/mar/01/forget-tango-the-murga-of-buenos-aires-is-a-riot-of-sequins-and-salvation
