I am not Lazy, I’m Ill
Multiple sclerosis can feel like your body is gaslighting you. When I’m 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." This literally translates to “my pulse does not tremble,” and refers to whether your heart races or your hands shake when pulling a trigger. This statement affirms that you are calm, cool, and collected as well as courageous, precise, and determined. I am literally and metaphorically skeptical if my hands shake.
I was diagnosed at the 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 and specialists—second and third opinions alike—all agreed that, like most autoimmune conditions, there wasn’t one clear trajectory of its progression. They all said MS “looks a little different for everybody." MS can advance in a gradual progression, or I could wake up one morning and find that standing on my own, without the assistance of a cane or a friend, was no longer a possibility. Life 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 didn’t feel like it. This uncertainty can be hazardous to anyone's health, to feel 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 reference—the fictional president nor the woman whose voice I never heard—had happy endings. Both had attempted to hide their condition because of the pervasive fear of being judged and were subsequently presumed incapable. Pity is never empowering, which makes disclosure inherently complicated even when it creates a good plotline. Admitting I had a disability, independently of its invisibility, was 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? Despite this, I showed up to work because sleeping in is something I was taught you earn.
Attempting to have symptoms go unnoticed by the untrained (and ablest) eye brings additional stressors. Then, 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 have 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 to keep covering up the disability. This too 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, one where the extreme fatigue, pain, or numbness in the limbs didn’t 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 indeed be President and have MS, it would only be in the context of television. Multitasking would be essential, and this is something many with MS note is unmanageable. Most days, you can only take it one day/task at a time.
Conversely, growing up Latina and poor in an immigrant household socialized me to over-perform. We "walk off" most things, even when they hurt and 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 degrees 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’m not impatient, yet at the same time, I couldn’t 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're resilient people, so I initially conceived of MS as just one more hurdle to overcome. But it was never behind me; it was me. The paradox now is I’m an academic, and I’m still fighting the perception of laziness. I try to explain to my family that I’m always thinking, writing, and creating despite being overeducated and underpaid. Cognitive-emotional work next to manual labor might not necessarily appear like "real work." However, there is a difference between this cultural misunderstanding of what I do and my work being systemically devalued simply 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 won’t rise to the level of disability. Many people confuse MS with muscular dystrophy, perhaps because both illnesses can emerge as 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’m an anthropologist. I observe. I tell stories. This is why I attribute deep symbolic resonance to the story of Naomi. Naomi was someone I never talked to because I was a child and she was an adult, which was sufficient cause for the lack of communication between us. But a day in my adult life doesn’t go by in which I don’t think about her. I have a vivid memory of 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, but never with her.
During the summer, my family went to a lake where friends and their families would join and partake in vacation fun on Saturdays. This is where I met her. 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 Freddy's wherever they walked. Then the following summer, she had a cane, and her hand was uncontrollable. That was the last summer she smiled. The following June Naomi was using a walker, and she stayed sitting on a bench after plowing through the treacherous dirt. She was still married to Freddy, but it only took one more summer for him to move on with a girlfriend who joined the summer outing. He moved Naomi from place to place, like an object who no longer could feel. He didn’t talk to her. She hadn't 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 information about MS was scarcer, but I’m still moved to tears to wonder what she must have felt. I disliked Freddy even more after learning that she never told him about her condition because she thought he would leave her, he only learned she was ill when she could no longer hide it. Her insecurities are understandable; I feared all men who were with women with MS could be Freddy.
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 wasn’t a statement about her physical suffering but the heartbreak she had to endure as she watched her world move forward as she was pushed around within it in silence and isolation.
Image credit: Pedro de Matos, 2009 (Flickr | CC BY-NC-ND- 2.0)
