“I am not Lazy; I’m Ill”*
Multiple sclerosis can feel like your body is gaslighting you. In high-stress mode, I lift my hands in front of my face to check if they are shaking. In Latino culture, we have a saying, “no me tiemba el pulso.” The literal translation is, “My pulse does not tremble.” This phrase refers to pulling a trigger and how when your heart races, your hands shake. This statement affirms that you are calm, cool, and collected but also means that you have courage, precision, and determination. I am literally and metaphorically skeptical if my hands shake. I was diagnosed at the very beginning of what was supposed to be my adult life, a belated college graduation gift. It left me stranded at a personal and professional crossroads a year into my graduate studies, trying to make sense of an incurable, uncertain, and unreasonable condition. Where did my dreams fit into this new abnormal?
Doctors, third opinions, and specialists all agreed that, like most autoimmune conditions, there was not one clear trajectory in its progression. Accordingly, they all said, “It (MS) looks a little different for everybody.” Well, the same could be said of most things in life. MS progresses gradually, or I could wake up one morning and find that standing on my own, without the assistance of a cane or a friend, is no longer a possibility. The idea of moving forward felt like a waiting game, an embodied purgatory where good and bad behaviors were ambiguously inconsequential. For example, alcohol and cigarettes were objectively bad for my health, but at the time, they were the only things that felt good. I was now sick even when I did not feel like it. This uncertainty can be hazardous to anyone’s health, to think that innumerable factors outside of your control will directly impact your sense of health and self.
I had only heard of MS in a limited context: Aaron Sorkin’s The West Wing and a family friend named Naomi. Neither illness reference was helpful. One was a fictional president, and the other a woman whose voice I had never heard. Both had attempted to hide their condition because of the pervasive fear of being judged and subsequently presumed incapable. Hence, pity is never empowering, making disclosure inherently complicated even when it makes for a good plotline. Admitting I had a disability, independently of its invisibility, it proved more challenging than “coming out.” How could I explain that I could sleep eight hours and wake up feeling even more tired than when I went to bed? And despite this, I showed up to work because I was taught that sleeping in must be earned.
There are additional stressors when attempting to prevent your symptoms from being noticed by the untrained (ablest) eye. When you slip and the makeup can no longer conceal the exhaustion, you are then tasked with proving you are, in fact, ill (and not lazy.) This all makes the premium on “passing” high. MS then becomes performative and induces neurosis. I lost count of the times I felt my entire leg numb while standing and lecturing in a classroom. Instinctually, my mind begs my body not to drag my leg or show any evidence of discomfort in my face. I substitute a grimace for a smile. This symptom, often called “pins and needles,” keeps you walking on them in public. Sometimes, simply functioning can wear you out to the point where no nap or break allows you to recover and refuel.
President “Jed” Bartlet, albeit fictional, represented an idealized narrative of MS, where the extreme fatigue, pain, or numbness in the limbs did not get in the way of performing. I found it hard to see my story in yet another white, straight male whose life, in many ways, was supposed to be aspirational. If you could be President and have MS, it would only be in the context of television. Multitasking is essential, but this is something that many who live with MS find impossible. Most days, you can only take life on one task at a time.
Conversely, growing up Latina, poor, and in an immigrant household socialized me to over-perform. We “walk-off” most things, even when they hurt, especially when others are watching. Even though my friends all recommended I withdraw from graduate school after my diagnosis, I ended up graduating before them. It became a race. I then went on to earn two additional master’s and a doctorate while raising a son and never asking for an extension or accommodation. It was as if I could hear the clock ticking louder on my chances to “do something.” Dreams felt like they were moving farther away if I were to sit still. I am not impatient, yet at the same time, I could not afford to wait.
I lived a significant part of my life trying to push back against stereotypes about poor Latinos being apathetic or unmotivated. We are a resilient people, so I initially conceived MS as just one more hurdle to overcome, but it was never behind me. It was me. The paradox is that now, I am an academic and still fighting the perception of laziness. I try to explain to my family that I am always thinking, writing, and creating despite being overeducated and underpaid. However, cognitive-emotional work in relation to manual labor might not necessarily appear like “real work” to them. However, there is a difference between this cultural misunderstanding of what I do and my work being systemically devalued because I am who I am, a queer Latina with a disability.
MS can be dramatic, even in the best-case scenario. There is also a misperception that if you simply take your medication and comply with doctors’ orders, your symptoms will not rise to the level of disability. Many people confuse MS with muscular dystrophy, perhaps because both illnesses can emerge in the form of limps or tremors. Nevertheless, MS can also feel like your body betrays you. Your immune system turns on you. It attacks you and tries to kill your dreams.
I am an anthropologist. I observe. I tell stories. This is why I attribute deep symbolic resonance to the story of Naomi. I never talked to Naomi because I was a child, and she was an adult, which was sufficient cause for the lack of communication between us. However, there is not a day in my adult life I do not think about her. I vividly remember her sitting in her wheelchair under the shade of a tree. Her husband, Freddy, placed her there so she could enjoy the weather as everyone laughed, played, and ate around her (never with her.)
During the summer months, my family would go up to a lake where friends and their families would join and partake in vacation fun on Saturdays. This is where I met her, Naomi. I saw the progression of her condition each summer without necessarily knowing what it was that was gradually restraining her. I just witnessed what it did to her. I recall what she looked like before the tremors began on her left hand, the same one who held her husband’s wherever they walked. Then, the following summer, she had a cane, and her hand was uncontrollable. That was the last summer she smiled. Naomi was using a walker the following June, so she mainly stayed sitting on a bench after plowing through the treacherous dirt. She was still married, but it only took one more summer for her partner to move on with a girlfriend who had joined the summer outings. He moved Naomi from place to place like an object that no longer could feel. He did not talk to her. She had not lost her hearing or eyesight.
I remember Naomi’s eyes. She was aware of her surroundings despite her inability to convey her thoughts or express emotions, which is what science suggests. I get it was the 1980s, and there was less information about MS out there, but I am still moved to tears to wonder what she must have felt. I disliked her husband even more after learning that she never told him about her condition because she thought he would leave her. Her insecurities are pretty understandable. When he realized she was ill, it was because she could no longer hide it. I feared all men who were with women with MS could be like him. Upon confirming my condition at the neurologist’s office, I turned to my mother and said, “I do not want to be like Naomi.” She was my first thought. It was not necessarily a statement about her physical suffering but, more so, the heartbreak that she had to endure as she watched the world push forward, and she pushed around in silence and truly alone.
*A version of this illness narrative appeared in Lady Science (2021.)
