MODA

Living with MS

Living with MS

Living with MS

Trying to understand diagnosis and disease as a young adult

Approximately one week before the start of fourth year, the optic nerve in my left eye swelled to two times its size and if I dared to look at my own reflection I saw only half a cheekbone and the fading remnants of a face. A day after the introduction of this swelling, I was diagnosed with MS also known as Multiple Sclerosis. Multiple Sclerosis is, in short, a neurological disease where the immune system, for reasons unknown, begins to attack the myelin sheath, the protective covering around the nerves, causing misdirected or failed signals. Its symptoms are varied from depression and anxiety, bodily numbness, loss of vision, fatigue, and at its most severe, difficulties with movement and speech. As my neurologist said, “‘blacks’ are being diagnosed with it at an increasing rate.” 

I want my MS to be an academic project; an assertion of a body warped by the pressures of a hostile environment, an ode to a contagion of capitalistic consumption which at its most volatile form leads the body to consume its own self, a dissertation on disease and degradation as it pertains to the colonial subject, a declaration of the body as a geographical location akin to a nation state that has too been poisoned by the ecological devastation of microplastics, an analysis of the failure of bodily defenses as they destroy in place of protection. It is not. On an MRI, my MS looks like 5 enhancing white matter lesions, which I again struggle not to take advantage of the poetic potential of white expanding masses on a black body, my own body. My disease and the potential for deterioration it holds is not a divine call or statement of genius for me to exploit to appease my mind. I can wax poetic about it, analyze and examine it as I have been taught through this university but none of that alters the very real fact that my own body has made me a war zone.

Absent of academic connotation, I’m not quite sure what to make of it, where to place it, or how to understand it. In recognizing it as a thing of its own, I must admit to a lack of control. Someone out there has fought for the right for my body to belong solely to me, to be in my possession unpolluted by kin, to refuse experimentation, yet in having such a right I eventually forgot that my body too belongs to itself. I forgot that the somatosensory system does not enable me to feel the dispersal of blood, the diffusion of nutrients, the strangulation of viruses, bacteria, and nerve cells. I cannot feel that I am alive nor my looming death. I want to refuse fact for delusion and consider this as surmounatble as any other task of body and mind. The whole lifetime I gave myself to become someone of note, to make mistakes then succeed in the end as my own unlikely hero may be less of a lifetime than I imagined. What if I don't have enough time? 

This was not intended to be dismal, fearful perhaps, but the dismal is unavoidable in questions of morality. The doctor who diagnosed me advised me to not let the disease change my life, my day to day activities but I yearn for transformation. I want there to be distinguishable selves for my respective before and after. As for what that transformation is I don't quite know yet.


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