The Stages of Grief When Dying Forever
Have you ever mourned the loss of an absence? Illness is the alarm you didn’t know was set. And you wake up wondering where the time went.
Some days, most really, you simply exist, you blend in, you perform. And you do it so well that you can forget what is actually going on. You do it so well that you manage to convince everyone else around you that there is nothing wrong, that you are just fine. There are days like this when you do it too well and someone says something meant well but received poorly. Because your tired is not the same as their tired. Your sick is not the same as their sick. Your living is not the same as their living. On days like that you don’t say much because the anger is too much. You’re never sure where the anger is really directed: to the people who keep mistaking your living as presence or to yourself for forgetting who you are. If you’re not careful your silence is just as loud as the raging scream beneath your polite how-do-you-dos. You fill the air with your sick. If anyone comes too close they’ll wonder if it’s about to rain.
When you hold onto the banister and everyone looks back with confusion you smile wide and say your foot fell asleep. And no one seems to question how a foot can fall asleep so suddenly.
Recently over lunch with a work friend I blurted out, “I don’t trust anyone!” I’ve always thought this was okay. I only trust myself though I know one day even my mind will become entirely unreliable and I will still trust that because it is chaos and disruption that I’ve always found reliable, in the first place. These are the things you lose and they’re not coming back. None of it is ever coming back. This is the point of no return and you didn’t know you’d been walking or searching. My first words after my diagnosis were: but I just got started. You see, that’s the loss and the prophecy. You lose everything and you begin again.
When you shower and see the bruises on your hips you then remember your acts of defiance on the stairwell, refusing to grasp anything but the notion that you deserve to go down the stairs as whimsically as anyone else. Depth perception deficiency, my ass, you think. Indeed, your plum colored left hip nods back.
Chronic illness might be a state of constant grief. It depends but, Multiple Sclerosis is a never-ending argument. The other night scrolling Facebook I came across a post in one of the MS groups I’m in. She posted about her journey to motherhood or, rather, the journey coming to a halt. The doctor told her, after the fourth and final ultrasound showed an empty womb, that sometimes the body will stop producing eggs as a protective measure.
The body and protective measures create a language of comeuppance. For her, it was a reminder that she would not be a mother, perhaps could not be one, not the sort she’d been envisioning all her life. And a reminder that what she wants and what her body wants might be at odds. She tells herself, “open, welcome, support a life, please, I’ll do anything.” Her body responds in aggressive refusal, “I’m already here, the life I support is yours. Please let me. I’ll do anything.”
How do you trust the body when the body is what betrays you? You learn to trust the betrayal. You know it’s coming. You might even know what it will look like, feel like. Or you don’t. This is okay – because it is not the body that is yours – but the betrayal that becomes you. You lose everything and nothing at all. Because you still have you – the body – but it is not the body you thought you had. See? Everything and nothing.
Comeuppance and conjecture. Lots of buts and well, actually or sort of and maybes. By the end of the day I have moved from contrarian to hermit. I want to go where everyone doesn’t think that their sick is like my sick. Because everyone else tells me that my body should be trusted. That my body is my first home. That I should listen to everything my body is telling me. And I get it, I do. It’s very progressive in this twenty-first century to be body-centric and body-inclusive. We shift our language and place our belief and confidence in the power of the body.
“But,” I object, my body is the lie. My body is the betrayal. My body is the house come undone. The call is coming from inside the house. Humor becomes horrific.
In meditation they tell us to trust our minds – that all the mind is doing is helping and trying to protect us – they say “trust your nervous system.” So I come out of meditation. Because it is my nervous system that I cannot trust or, rather, I trust that it is no longer helping me – that is not its purpose anymore. It was robbed therefore so was I. So, a loss of trust. Perhaps, even, a violation since it is my immune system attacking me by way of the nervous system. Or vice versa. Sometimes you lose track of the villain in stories such as these.
After you face what is happening you must also stand back in wonder. You take note of the adaptations your body had already begun making in response to an illness yet to be found. There is an ease to the body’s response to sick, to the mind, within the self. When faced with sick the body will quickly and quietly adapt, softly, bit by bit into something else. Not the same body but also the same body. Making changes, edits, notes into the process of living. Your body goes into revision.
Acceptance -- I have had dozens of MRIs in the last decade. I’d always assumed they would be silent cocoons. Not wells of cacophonic violence set upon your ears and mind. I think, when I’m inside, thank goodness for Philip Glass. Maybe this was how he started. He heard a beauty in this somewhere. I used to be able to fall asleep in them but the last few have been moments of fantasy. Perhaps it is because I have now reached that age for single, childless women when my choices and circumstance are in technicolor.
Now, when they tell me to listen to your body I adjust. Ten years have passed and I hear it and adapt it to how it fits me – which is what we’re all supposed to be doing anyway.
But there is a residue. To be in such a constant state of objection and flux, to be the very body of evidence that proves the lie. Maybe, I say quietly, this still applies to me. I say this whenever the word love stands in for listen.
It has been years now. I don’t think of this too much anymore. But then I see someone rush down the stairs. Maybe to work, maybe to home, maybe to nothing but the next act. I see the flight.
And I ache.
Linda Chavers is from Washington, DC and obtained the PhD in African American Literature from Harvard University in 2013. A hybrid academic she writes on pain and memory and she teaches on Black Womens Voices in the #MeToo movement. She lives in Cambridge, MA with her beloved 4 year old Westie, Biggie Smalls and when she's not working she is in bed.
www.lindachaverswrites.com Books: Violent Disruptions: American Imaginations of Racial Anxiety in William Faulkner and Richard Wright (Peter Lang USA: 2018) This Body Is Never Yours (Gazing Grain Press: 2017)
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