My lover arrived in the winter of my thirteenth year,
though I did not know it then. It came as a shiver that refused to leave, a
cold that lived beneath the skin and would not be warmed by blankets or tea or
the sun that fell across my bed each morning like a disappointed sigh. The
doctors called it stress, after a while they gave it fancy names too. They
called it the predictable failure of a woman’s body to keep its house in order.
They called it everything except what it was: the first visitation of a god who
had chosen me for his temple and his battleground, who would spend the next
decade teaching me the terrible intimacy of living with someone who loves you
enough to destroy you.
This is not a story of survival. It is a story of
marriage.
In the beginning, he was charming. This is how all the
best betrayals begin—with small gifts, with attention that feels like devotion.
He gave me days so luminous I forgot there had ever been darkness. I would wake
and my body would be light, cooperative, almost eager. I could run, could
dance, could stay awake past midnight and feel only the sweet fatigue of a life
fully spent. On those days, I loved him. I loved the way my legs carried me
without argument, the way my hands held pens and cups and the faces of friends
without trembling. I loved that I could forget him entirely, which is, I think,
the deepest form of love we offer our bodies: the privilege of invisibility, of
being so perfectly functional that they cease to exist.
But love, in this house, is not a gentle thing. It is a
fever and a chill. It is the hot season that fills you with so much life you
think you might burst from it, followed by the cold that comes not from outside
but from within, rising up through the bones like groundwater after rain. He is
always both. He is the warmth that spreads through my chest on a good morning
and the ice that settles in my spine on a bad one. He is the lover who holds me
close and the lover who holds me under.
The first betrayal was not the pain. The first betrayal
was the not-knowing.
For twenty years, I carried him like a secret I did not
yet know the name of. The neurologists were polite and baffled. The
rheumatologists were certain and wrong. One man, who smelled of stale coffee
and older regrets, told me that my symptoms were the product of a “somatic
preoccupation”—a phrase so beautiful in its cruelty that I wrote it down.
Another suggested yoga, as if the body could be talked out of its mutiny
through breathing and good intentions. A woman with kind eyes and terrible news
told me that some people simply have chronic pain with no identifiable cause,
and that the task of living is learning to accommodate mystery.
I accommodated mystery. I accommodated uncertainty. I
accommodated the slow erosion of trust between myself and the body I had always
assumed was mine. He was no longer mine. He was his own country, with his own
weather, his own laws, his own calendar of feast and famine. I was merely a
resident, a tenant, a wife who had married well and then discovered that her
husband was a season.
When they finally named him—multiple sclerosis, the
sclerosis of many, the hardening of many places—I felt, against all reason, a
kind of relief. He had a name. He could be spoken of, studied, tracked across
the sky of my body like a planet in retrograde. But a name is not a cure. A
name is not a promise. A name is only the difference between being haunted by a
ghost and being haunted by a man whose photograph you keep in a drawer.
And now we live together, he and I, in this body that is
both house and hostage. I know his moods. I know the way he gathers himself
before a storm—the heaviness in my limbs, the way sound becomes sharp and
unbearable, the sense that my head has been packed with wet sand. I know the
seizures, which arrive without warning and leave me collapsed on bathroom
floors, my body a geography of trembling I no longer recognize as my own. I
know the days when every movement is a negotiation, when the simple act of lifting
a cup requires a speech to my arm about why these matters, why we must
continue, why we cannot simply give up and let the cup fall.
He does not speak, my lover. He has no voice, no face, no
hands. And yet I know him as I have known no other being. I know the weight of
him pressing down on my optic nerve until the world goes dark in one eye. I
know the way he tightens around my ribs until each breath is borrowed and must
be repaid with interest. I know the heat he brings, the strange fever that
rises without infection, the body burning itself for no reason, like a house
set alight by its own occupant.
How does one live with such a relationship? How does one
remain married to a lover who is also a war?
I have thought, of course, about the violent break-up.
This is not a confession; it is a fact, as unremarkable as rain. When your body
has become a country occupied by an enemy force, you dream of liberation. You
imagine what it would be like to simply walk away, to leave him there in the
hospital bed or the bathroom floor or the quiet bedroom where you have spent so
many hours negotiating surrender. You imagine the silence that would follow,
the sudden absence of his weather. You imagine peace.
But peace, like love, is complicated. To leave him is to
leave myself. He is not a tenant; he is the house. He is not a guest; he is the
marriage. To end this relationship is to end everything that contains me, and I
am not yet ready to be uncontained.
So, we continue. We wake together each morning and take
inventory: what works today, what does not, what can be coaxed into cooperation
and what must be carried. We have learned, over the years, a kind of rhythm. He
gives me three good days, and I spend them living twice as fast, cramming weeks
into hours, gathering light against the coming dark. He gives me a bad day, and
I lie still and let him have his way, because fighting uses energy I will need
tomorrow. We are not happy, but we are not always unhappy. We are, I suppose, a
marriage.
The prognosis is not kind. They tell me this in careful
language, in rooms with soft lighting and boxes of tissues placed within easy
reach. They tell me that this is a progressive relationship, that he will not
grow gentler with age. They tell me that the lesions on my brain are like scars
from old arguments, and that there will be new arguments, new scars, new
territories lost. They do not tell me how to live with someone who is, in the
most literal sense, destroying me from within.
But I have learned things they do not teach in medical
school. I have learned that pain, when it has nowhere else to go, becomes a
kind of love. Not the love of greeting cards and weddings, but the love of two
beings who have no choice but to share a single life. I have learned that my
body is not my enemy, though he is also not my friend. He is my companion, my
adversary, my oldest and most intimate acquaintance. He is the one who has been
with me from the beginning and will be with me until the end, and whatever that
end is, we will meet it together.
My name is word in Sanskrit: Neer. In all of its variations
and nicknames- It means water. Some days, I am the water that cannot move, that waits in its basin
and watches the sky change and remembers what it was to flow. On those days, my
lover sits with me in the stillness. He does not apologize for what he has
taken. He does not promise to restore what he has stolen. He simply stays, as
he has always stayed, as he will always stay, and together we wait for the
season to turn.
And it does turn. This is the cruellest and most
beautiful thing about him: he always quiets down and becomes almost loving, and
then he always returns. The good days come back, and I forget, for a while,
that they are borrowed. I forget that every remission is only an intermission,
that the play has not ended but merely paused between acts. I walk in the sun
and feel my legs remember how to be light. I laugh without calculating the
cost. I make plans for next month, next year, for the distant future when he
will be, if not gone, then quieter, more manageable, less himself.
This is how one lives. Not by accepting, not by
surrendering, not by fighting or fleeing or transforming pain into wisdom. One
lives by forgetting, over and over, what one cannot afford to remember. One
lives by believing, against all evidence, that this time the good weather will
last. One lives by loving a body that has betrayed you and will betray you
again, because the alternative is a divorce from which there is no return.
Someone said ‘love is the opposite of war.’ But I have
lived long enough in this body to know
that love can be a war, that the heart can be a battlefield and the bones can
be weapons and the softest touch can leave the deepest scar. My lover is not
gentle. He does not bring me flowers or write me poems or remember our
anniversary. He brings me fatigue that settles in my muscles like concrete. He
brings me pain that radiates from my spine to my fingers to the soles of my
feet. He brings me days when I cannot remember the word for ‘chair’ or ‘water’
or ‘home’.
And yet. And yet.
On the good days, when I run my hand along my arm and
feel only skin, only warmth, only the ordinary miracle of a body doing what
bodies are meant to do, I am grateful. Not for the bad days, not for the
lessons they have taught me, not for the strength I have supposedly gained from
enduring them. I am grateful for this moment, this breath, this small and
temporary peace. I am grateful to my lover for granting me another hour of
truce.
This is not a happy story. It does not end with healing
or wisdom or the triumphant reclaiming of a body that was never fully mine to
claim. It ends, as all marriages do, in mortality. One of us will leave first,
and the other will have no choice but to follow. We will go together, as we
have always gone together, into whatever darkness waits on the other side of
this long and difficult union.
How does one live with a toxic relationship with one’s
own body? One lives by learning the grammar of pain until it becomes a
language. One lives by translating seizures into sentences, fatigue into
paragraphs, the slow erosion of mobility into a narrative that can be told and
retold until it makes a kind of sense. One lives by refusing the easy metaphors
of battle and recovery, by acknowledging that some wars are not won but simply
endured, that some loves are not chosen but simply survived.
One lives. One wakes each morning and takes inventory.
One thanks the body for what it can still do and mourns, briefly, what it can
no longer do, and then one moves on because there is nothing else to do but
move. One learns to distinguish between the pain that signals danger and the
pain that is simply the background music of a life lived in close quarters with
an unpredictable partner. One learns when to fight and when to surrender and
when to simply lie still and wait for the season to turn.
One lives by loving, which is to say by staying, which is
to say by refusing to leave even when leaving is the only reasonable response.
One lives by making peace with the lover who is also a war, by accepting that
the body is not a kingdom to be conquered or a temple to be preserved but a
marriage to be endured, in all its difficulty and all its grace.
This is not a story of survival. It is a story of
marriage. And like all marriages, it is both too long and too short, both
unbearable and unbreakable, both the wound and the hand that tends it. I did
not choose him. I cannot leave him. I can only wake each morning and take his
hand—my hand, our hand—and step together into whatever weather waits.
My lover is not kind. My lover is not gentle. My lover is
not the partner I would have chosen if choice had been offered. But he is mine,
and I am his, and we are, for better or worse, until death does us part, which
it will, which it must, which it already has, a little, every day, for years.
But not yet. Not today. Today, the sun is falling across
my bed like a blessing I do not deserve but will accept. Today, my hands are steady,
and my vision is clear and my legs remember how to carry me from room to room
without argument. Today, my lover is quiet. He is sleeping, perhaps, or simply
waiting, as I am waiting, for the weather to change. And in this small window
of borrowed time, I am alive. I am alive, and he is with me, and we are, for
this moment, at peace.
Copyright©Neer
