by Michael Abraham-Fiallos
I knock at the bathroom door.
“You alright, hun?”
No pause. “Yeah, I’m fine! Just bad today.”
I try to keep any sign of pity out of my voice—nobody likes to be treated like a patient—“I’m sorry. Can I get you anything?”
No pause. “No, I’m fine! Love you.”
“Love you, too.”
My husband has a chronic, invisible disability called microscopic colitis. It is a bowel disorder, common in white women in their seventies and eighties. (He likes to joke that at least some part of him is privileged.) It causes pain, bleeding, and, quite often, a violently upset stomach. Marco is remarkably lighthearted about it, but it is the kind of disability for which one could be put on government assistance. Some days, I don’t even notice colitis. And then, some days, Marco is scarcely out of the bathroom. He has developed all of his own ways of coping with this, using music mostly to turn the bathroom into a kind of sanctuary. Most days are somewhere between these extremes. Colitis interrupts things here and there, causes us to miss movie credits or makes us late for dinner. I have no idea what it is like to be the one who suffers through missing movie credits or running late for dinner. I have no idea, either, of the pain—real, physical pain—that I can so simply gloss here as movie credits and dinner. For me, it is abstract. For him, it is embodied and immanently real. I only know what it is like to live adjacent to that suffering, to witness it and to try my best to respond to it with delicacy and care.
The first and most prominent thing I have learned in my five years of living with a man who has a disability is that those who live with disabilities are remarkably resilient. This almost sounds like a cliché. Of course they are, you’re thinking. But resilience is a more expansive thing than our typical idea of it.
When we think of resilience, we default to the dramatic and the intense, to the ability to endure. Resilience, I have learned, is more than just enduring (enduring pain, enduring humiliation, enduring whatever it is). Resilience is an attitude, a style, a sense of humor. One wears resilience, not like armor, but like a favorite shirt. Resilience is the ability to find joy, laughter, good-naturedness in the places where there is immense difficulty. An example might help. Something quite damaging and lastingly traumatic for Marco is that he was not believed, as a child, that he had major gastrointestinal issues. A few years ago, he decided to try stand-up comedy. It was something he did quite well and something in which we both delighted until he realized he’d gotten out of it all that he was looking to get (which is a different story). At his first show, I sat next to his mother and some of our closest friends, picking at my cuticles nervously. None of us had heard his five minute act. Finally—the wade through the other comics that came before him was interminable—he took the stage. He opened with a crack about how colitis is a shitting disease. The audience chuckled. By the end, he had them howling, joking about how his family members used to suggest he drink a Sprite for his upset stomach or how his mother used to think he was spending his time in the bathroom counting the tiles. It was only years later, when he was engaged in hypnotherapy with his psychologist concerning colitis and its effect on his life, that I fully grasped the profound isolation and frustration that those jokes secretly disclosed. Resilience, in this case, is not the ability to make something funny out of something traumatic; we can all do that. Resilience, here, is the ability to delight a room full of people, to transport them into your experience and make them brim over with empathy. Resilience is a certain attitude toward hurt, a kind of strength and confidence that emerges when one realizes that hurt is not the whole story and not the only way to tell the story.
I have learned other things, too. One of them is not about people who live with disabilities so much as it is about the nature of disability itself. I wrote earlier that I am adjacent to Marco’s suffering with colitis. But, in a very real way, Marco is also adjacent. Colitis has its own rhythms, its own timeline, makes its own decisions about how he will feel on a given day. He lives adjacent to his own condition, working around it, teasing out its patterns and suffering its unpredictability. I am adjacent to his adjacency. Recently, he had to miss two parties in a row with my college friends. The first party he missed because he had a cold. The second he missed because of a bad colitis day, with all the fatigue and frustration that entails. Marco had no desire to miss either party, and I felt for him. A friend of mine, who had attended both the first and now this, the second, quipped, “Oh, Marco is sick again?” as though I was lying to cover his ass because he did not want to be there. In that moment, his adjacency to his illness—the overwhelming unfairness of being caught in the bathroom while your husband is off drinking and chumming it up—roared up in my mind, and I saw red. I said nothing other than “Yeah, I know. It’s too bad,” but inside I was boiling. I don’t think this friend had any bad intentions. In fact, I think she was just surprised, maybe a touch suspicious. But the moment underscored for me perfectly why people who live with disabilities have to wear their resilience like a favorite shirt: those of us who are able-bodied cannot quite comprehend what it means to be adjacent to the whims of one’s own body. That displacement, that loss of agency, is foreign to us. And the only way to meet that foreignness is with great grace and seeming effortlessness, an impenetrable sense of one’s own worth.
Relatedly, I have learned something invaluable and immensely frustrating about the difference between visible and invisible disabilities. People treat visible disabilities as facts of life. They are apparent and apparently real. This is not to say that those with visible disabilities do not face obstacles, discrimination, and general trouble moving about the world. But, at least, the fact of their disability is not in question. Invisible disabilities, like colitis, are different. When I was in college, I lived with a person who had fibromyalgia. A condition without a cure and little understood both by scientists and by the general public, fibromyalgia is debilitating in the extreme. People used to question the reality of my roommate’s pain—down to their own doctors—as though that embodied and lived experience were debatable. I see the same play out with my husband. I see him fight to be recognized as disabled even by those who professedly care about his wellbeing. I see a pernicious and false distinction between illness and disability play out in work environments, friendships, and family relationships. People would prefer to think of his condition as an illness because illnesses, even chronic ones, present in people’s minds as finite. The unendingness of a disability, on the other hand, frightens people. It makes them think in ways they do not want to about the lived struggle of another person’s life. Particularly when they cannot see the disability with their own eyes, it is easier to pretend that the disability is not really a disability at all but rather a problem with a solution—perhaps a solution that has not arrived yet but a solution all the same. The lack of solution that, after all, defines disability makes people deeply uncomfortable. It drives them into denial and distraction. Where there should be empathy and compassion, there is all too often a cold and automatic dismissal of the problem. This is even worse in the case of a person who, like Marco, has found great success in their life and work, for that success convinces others that the disability must not be so all-consuming, that it must indeed have a solution. People fail to comprehend the adjacency with which the disabled person lives in relation to their own body, the indefatigable resolve that is required to continue to attend both to everyday life and to the limitations that their body imposes upon the everyday.
I want to return to that little scene I sketched out at the top of this essay. “No pause,” I wrote twice. It is true that Marco’s reassurances always come abruptly and cheerfully without a pause to indicate a moment of reflection. He never needs anything from me in those moments of struggle. That lack of pause tells me something profound and deeply affecting. The lack of pause indicates a familiarity with struggle, a dogged determination to do it all alone. Even with his husband, he is firmly and squarely set upon being his own support system. The lack of pause is a desire not to worry the other person, a learned behavior that prioritizes the emotional comfort of the other over the physical comfort of oneself. It is the clearest indication, to me, of the isolation that disability confers upon the disabled person. It is also a testament to a remarkable kind of strength, an ability to depend wholly and confidently upon oneself even as one faces both the physical toll of a disability and its accompanying emotional upset. This is an ability I do not have. One might not be unfair in calling me a touch needy. And my need is often for someone who needs himself just as much, if not more, than I need him. What remarkable fortitude there is in being able to subsist, adjacent to one’s own body and its patterns, and also to wholly and entirely show up for others. I am awed by this store of power, but I do not say it enough. One of the reasons I decided to write on this particular topic was to share, not only with you, reader, but with Marco as well, what courage there is in the everyday experience of disability, what great love of self and others it takes to be fully present in life while living adjacent to the body one inhabits and is. It is something in which I hope Marco takes pride, for I take pride in it on his behalf—great pride born of great love.
I do not pretend to be an expert on disability. Again, I live adjacent to its adjacency. I only claim to be an observer of its reality, someone who understands a little piece of what it means to witness the cleverness, care, and bravery of those who live disabled and must move about the world differently than I do. I have a great deal of respect for these people, and I think it is respect—common, decent respect—that is most sorely missing in our attitude toward disability. Too frequently, disability inspires an unpleasant mixture of pity and fear. Pity and fear are the ingredients of catharsis according to Aristotle. When we view the tragic hero upon the stage, we feel pity for his plight and fear that his plight might become our own. Notice that both of these emotions are incredibly self-involved. Pity is innately a feeling of superiority, a sense that fate has dealt us a better hand than it has dealt to our tragic hero. Fear for one’s own destiny inspired by the destiny of another warps that other into a vehicle for our own self-reflection and self-soothing. This is all fine and good in the theater, but in real life it is a moral failure. Disabled people are not tragic heroes. They are merely people living their own lives in their own ways, discovering their own capacities and limitations, coping and excelling and failing and doing the damn thing. They are, that is, just like everyone else even if a bit more resourceful and a lot more resilient. To treat them as any more or any less than anyone else is to do them a great disservice. So, I still knock at the door to check in on my husband as I would with anyone else. And when I get that pause-less “Yeah, I’m fine!” I go about my day as I would with anyone else. It is true that we are adjacent to colitis, but it is also true that he is not defined by it and nor are our days together. It simply is, and we simply are in its presence.