That Still, Small Voice

I think it’s fair to say that I have had very limited experience with the nature of evil, and I’d like to keep it that way. I have never consciously allowed myself to delve too deeply into the study of evil (despite its insinuating fascination) because my limited experience has been so disruptive and cancerous to my life that I am honestly very afraid to invite more in.

By this, I mean that the aftershocks of evil thoughts or actions play out in my life long after the deed or word has passed. I am not saying that I have engaged in many evil words or deeds, but there is a definite dark side to my personality that viciously rips into anyone around me whenever I am despairing, and I work very hard to keep this part of myself muzzled and imprisoned. It is not something I am proud of.

By far the most pervasive and debilitating repercussion of evil is this voice that pretends to be a part of my personality. It speaks to me, almost daily, advising me on what to feel, how to think, what to do, and most often: why I must give up. It is truly ubiquitous in my life, providing a jarring chorus of disharmony to everything that I do and say, waiting for the briefest moment of weakness when it may slip in and bray its false truths.

But I am getting too abstract here. Let me give you an example.

I haven’t been sleeping well since Cecilia’s diagnosis. I trudge like a zombie down Google wormhole after PubMed rabbit hole, learning exactly how many ways there are to rephrase “Senior Løken syndrome life expectancy” before you can’t find any new search results. My eyes are burning, my body is telling me to stop and just sleep, and Cecilia is breathing peacefully beside me, and I just ignore it all and keep reading. And all the time, the voice that I fight so hard to smother during the day becomes more and more clear, strong, and confident the more and more tired I become.

She’s going to die. She’s going to die just like Lizzy, only it will happen this time in slow motion so you get to savor exactly how useless you are to help her. Years and years will pass and you will watch the strength and life fade slowly from her, watch her skin grow pale and yellowed, watch as the exhaustion and terrible thirst sets in, watch as the liver cirrhosis and renal failure and cardiovascular strain all begin to fall out like dominoes. And, if you’re very lucky, you’ll get to watch her degenerate neurologically and it really will be like watching Lizzy’s brain death happen in slow motion.

And you, you useless fuck, get to stand there with your perfectly functioning eyes and brain and kidneys and liver . . . and survive.

So speaks the voice, and, in hours like last night, I have neither the strength nor the conviction to argue with it. You see, what is required to silence the voice is an enormous amount of will power. You have to act in such a way that you allow the good moments of the day to resonate so loudly that the beauty of their song drowns out the cacophony of the voice. I’ll give you another example.

Every night, I give Cecilia an infant massage with coconut oil to help her circulatory system function well, to help her gain weight, and to relax her before bed. Last night, after our massage, I kissed her eyelids and asked Lizzy to pray for the strengthening and healing of Cecilia’s eyes, like I do every night. But I couldn’t stop there. I kissed her brows, her cheekbones, her forehead, nose, lips, shoulders, and chest. And as I kissed her, I ordered my racing mind to freeze and focus on feeling the feather-light touch of her tiny fingers and palm lifting like a swallow to rest against my cheek. I watched the long charcoal of her lashes fall, slumberous and heavy, coming to rest against her round, peach-white cheeks. I listened to the barely audible sound of her breathing as her tiny chest continued to rise and fall and a miniature sigh escaped from her pink bow of a mouth.

I looked at her torso and could not understand how this tiny, perfect body could hold something so deadly and savage inside of it. I looked at her eyes–her nystagmus more pronounced as it always is when she’s tired–and couldn’t understand how they could look so normal and so blue and yet not provide her with the sight she so desperately deserves.

What does one say to such un-reason?

I’ll tell you what the human response is. I’ll tell you what the only response is. You must empty yourself. You must empty yourself and become a vessel through which the beauty and the reason can sound and throb and echo and eventually–just maybe–drown out the clamor.

My first daughter had a disease that ravaged her little body from the inside out. Now, my second daughter has a disease that is waiting silently and surreptitiously to devastate her as well. There is no response except to kiss my living daughter all over her little body, tell her how beautiful she is, how grateful I am that she is here with me, and how I will do everything in my power to help her bear the pain she will eventually be asked to bear.

And yet that still, small voice that will continue to whisper to me: Kiss her all you want, you fool. After all, what is a kiss in the face of genetics? What does your love mean when science is clearly telling you that you damned your child to this fate? You stupid, selfish waste of breath. Go ahead and play some sort of martyr. It will always be Lizzy and Cecilia who pay the price, not you.

It will whisper this and more. And often. I cannot stop it. What I can do, perhaps, is learn to listen more deeply for another voice. A voice that is even more still and even more small, but whose stillness is not ominous and whose smallness is not shadowed. Because it is this voice that is telling me that kissing Cecilia is the only thing that really matters. That everything that I need to know is contained in her small, fragile hand reaching up to cup my face and draw me closer. And that no matter how much evil or disease or death lurks inside us both, waiting for their moment, they still have no power to undo the beauty of the music of my daughter’s lives. Nor my will to become an echo chamber that will resonate that music to the world long after we all are dead.