My sickness is with me always.
BY KATE HOROWITZ
It’s been ten years since The Fountain was released. It wasn’t too long after the movie first came out that you mentioned it. You’ve been referencing it ever since—a conquistador here, a queen there—only I didn’t know, because I hadn’t seen it.
I’ve seen it now.
I came away wondering: does he read this story as a cautionary tale, or as a guidebook? I suspect it is the latter. We’re so good at missing the messages we need to hear.
Which, I suppose, is why I’m writing this now.
I have a pretty good idea of what you saw in this movie. But here’s what I saw: a man unable to cope with his wife’s illness.
A story: Remember, our third night together, I told you: there is a sickness. My body is doing the best it can. I am doing the best I can. I’m all right, most of the time. But there is a sickness. And you looked at me like I was holding a knife.
The film is a picture book in black and antique gilt: a dark house, a palace a universe, all lit by an improbable multitude of small gold flames.
In 1505, Queen Isabel of Spain is under siege. Tomas, captain and conquistador, rides to her aid.
In 2005, Izzi Creo is dying of cancer. Tommy, husband and researcher, hunts for a cure.
In 2505, a dying tree and a desperate man float through space.
Izzi has no illusions about her prognosis. All she wants in the time she has left is to live—really live—with the man she loves.
Tommy wants more.
I am fortunate. Unlike Izzi’s cancer, my sickness will not shorten my life.
But it is with me always. I was born ill, and unless there are radical breakthroughs in gene therapy, someday I will die ill. In the mean time I will face limitations, loss, and pain. We all will. Every one of us.
You cannot change this. I’m not asking you to. Of all the sick women I have met (and by now I have met many), I have never found a single one who wanted her loved ones to cure her.
A story: I mention that the illness is bad again. You gallop through the night, clear across the country, and show up at my front door. Gold light from the house spills onto the dark doorstep where you stand.
You look beautiful, you say. You sound almost disappointed. Looking back, I wonder what you expected. I wonder if you would have come if I told you I was fine. I mean, I wasn’t. But I wonder.
Chronic illness is a constant negotiation with grief. Periods of recovery and reprieve are followed by seasons of loss. The things we love, or need, or have, are taken from us again and again. Sick women learn along the way that it is wise to mourn and move on. Why waste the time we have been given trying to rewind the clock?
This is not the way you see things, I know. Just as I know it is not easy to know that the woman you love is in pain. But pain is part of the bargain. We are granted joys, and we are given sorrows.
“I want you to be with me,” Tommy tells his wife.
“I am with you,” she says. “Look.”
A story: You stand to leave after a long meal and tell me you will pay to fix this. I realize that you’ve been appraising me across the table for the last four hours, comparing how sick I seem with how healthy you think I should be. You tell me you will send me away to doctors in Europe. You will buy me surgery, experimental drugs. But I am satisfied with the doctors I have, and all the money in the world will not make me well.
If you really want to help, make me a beautiful breakfast. Bring me a flower, an ice pack, a cup of ginger tea. Play me songs I’ve never heard before. Carry my laundry basket down the stairs when my legs are unsteady.
Let me manage my own body. Trust me when I say I am strong enough to go for a hike. Don’t criticize my chosen treatments or lack thereof. You may think I should work less, or eat differently, or meditate more. You may think doctors are dangerous, unwise, or tainted by profit. You may think taking medicine is a sign of weakness. You may think that if I just did it your way I would be better already. Keep those thoughts to yourself.
Celebrate my small victories. Let me celebrate yours. Feel your own disappointment, and helplessness, and anger. Do not fear to share them with me.
Recognize that while I care for you, I do not need you. A good love will enrich my life, not sustain it.
See your friends. Take pride in your work. Listen when I speak.
Acknowledge that all this will end, one way or another.
A story: You have grown impatient with the way I exist with my illness. You tell me you would like to take it outside when I am not looking and strangle it. I understand. I really do. The problem is that my illness is a part of me, twisted into my DNA. You can’t destroy one and save the other. You can take us both, or leave us.
Conquistador, do you feel that I am picking on you? Here’s the thing: you are not one man. You are exes, yes, but friends, too. Family. A composite of crusaders past, present, and future. I know I am not quit of you, which is another reason I am writing this.
You don’t have to like my illness. I certainly don’t. It’s not like I’m living in serene equanimity with this thing that squeezes my heart and erodes my bones. It’s not like I enjoy the weakness or the pain, or the way they lock me out of the life I’d like to have. It’s hard for me, too. Which is why, when I let you in, I need you to see me.
Do not go from me to seek a solution. Do not sacrifice the living in your pursuit of a perfect, unending world. Just be here, now.
Spare me the knight, come to wrest me from the inevitable. I want a witness, a confederate. Someone who will kiss me, laughing, and hold me when I cry. Someone who, when I point, can see the small flames studding the darkness.
Kate Horowitz is a science writer, essayist, and poet living in Washington, D.C. Her essays have appeared in Pacific Standard, The Atlantic, Bright Wall/DarkRoom, and many others. By day, she writes [mostly] silly science stories for mental_floss, but still has her silly science start at Luna Luna a few years ago! Her website is Things Written Down. She tweets @delight_monger.