I don’t know what love is until I watch my mother crush ice into chips with a hammer for my father, who is recovering from chemotherapy. He can’t eat, makes frequent trips to the bathroom and has, recently, lost weight.
“It’s about the duration of symptoms,” my new psychiatrist tells me, during our 90-minute consultation in early August. “It’s about reducing the duration of symptoms, rather than total remission.”
That’s a fancy way of saying I’m never going to get better, and most likely, I’m going to get worse. My daily message from Co-Star says, Your body is a metaphor. A metaphor, precisely, for what?
Zyprexa is what they use in hospitals to sedate the severely manic or psychotic patients, by injection, in milligram doses. I’m not taking a large dose, but I can’t help but remember that in the hospital, we called it “booty juice,” because it has to be injected into a large muscle group, usually the gluteus maximus. I take it in pill form, white and chalky.
Everything happens all at once: my father is knocked out by the chemotherapy, and I come down from the ceiling, after a four-month hypomania that lays me on my back and almost sends me to the hospital. I feel my father’s illness in my body — I physically feel his pain, his weakness, as we sit in the ER waiting room waiting to be seen by a doctor, his head in his hands. “We’re seeing people in order of how sick they are,” the ER nurse explains.
“He has cancer,” I half-shout. “How can anyone be more sick than him?”
She gives me a look like, I have to deal with these crazy people all day, every day. Immediately I feel bad for making her already difficult job even more difficult, but love is a body part, and you can break it.
I don’t know what love is until I sit in the steamy hot kitchen on a Friday afternoon, ostensibly working from home, bringing my father applesauce, turning on the radio for him, upending cats. Heartbreaking revelations lately: I’m sorry my cancer ruined your birthday. My mother says he’s been depressed. “Wouldn’t you be depressed?” I say, chewing on the straw of my iced coffee.
Actually, he’s in remission. The doctors have told us his blood is cancer-free. But the chemo has ravaged his body, made him thin and weak, nauseous and sick. We make an appointment for him to go to the doctor for hydration. We buy PediaLyte and Gatorade. We watch as he drinks protein shakes, water, vegetable broth. The first thing I said to my partner when he was diagnosed: “I can’t do this.”
“But you have to,” he said, as I sat in a towel on my couch in my studio apartment. “You have to be strong for him.”
Strong, apparently, is not one of my qualities.
Everything happens all at once: I am on deadline for an editorial project, I have three book reviews due, and I am on the hunt for a new psychiatrist. Making phone call after phone call to numbers that lead me to other numbers, I get frustrated and yell at someone who has told me I need a referral.
“What’s the point of getting a GP referral when all they’re going to tell me is that I have the same diagnosis I’ve had for the last five years, and charge me fifty dollars for that information?”
“I’m sorry, that’s just how we do it here,” the woman says, exasperated at me. I realize I’m yelling and calm down. It’s not her fault I’ve been on the phone for the last hour, on a wild goose chase. “I can make you an appointment, but we’re booked out until November.”
“What do you not understand about the fact that I need an emergency Psych referral?” I say. “I can’t wait until November.” It is August. I’m annoyed that I’m taking time out of my workday to do this, when there are a lot of more important things I could be doing.
“Let me transfer you to our scheduling department,” the woman says.
“No! Don’t transfer me! Wait!” But the line is already transferring to hold music, and I’m exhausted, sitting back in my chair, giving up.
I don’t know how to be sick after two years of remission. Sick feels alien, unreal, fake. I am not a sick person, I say, going over my medical records with an intake doctor during a phone screener for a new psychiatrist. I am a normal person. I do not have a diagnosis, a prior hospitalization, a panoply of meds. I am regular. I am dysregulated. Chronic.
My father, too, does not ask for help easily. Sick from the chemo, he hates asking us to do anything for him. I ask, “Do you need anything?” as he sits in bed with the cats, dozing off, tired from the meds. He asks me to open windows, bring him Gatorade. In this way we are alike, sick at the same time. In the Emergency Room, a man sees us and says: “Is that your father? You two look alike,” and I am proud to be his daughter.
My mother feels pulled in two directions, surrounded by sick people. “This has been a hard summer,” she admits.
“I’m sorry,” I tell her. But I don’t know how to get better. I take my pills. Go to therapy. I wait.
Everything happens all at once: I move, change jobs, my father gets sick, and I travel from New York to Philadelphia for a writing conference. The combination of factors sends me into a manic episode that lasts almost four months, sending me into the stratosphere. This is how I deal with stress. The constant working, the no sleep, the drinking and partying. It’s a familiar pattern, and it fits like a glove.
“I have some ideas,” the new psychiatrist says. He’s older, white, balding, friendly in a cold sort of way. A true clinician. “We could try a different antipsychotic. I don’t want you to do ECT until I’ve thought more about how it would apply to you.”
ECT — electroshock therapy — putting electrodes on my brain, and sending a tiny electric current through it, which creates a small seizure. It terrifies me. But it often works. I’m not against anything he suggests, if it could give me some relief from symptoms.
It’s not a small exaggeration to say that I’m desperate. I can’t live like this — in constant fear — that I’ll start cycling, that I don’t know when the next episode will hit. Bipolar is terrifying in that you never know when you’ll be sick or well, so it’s impossible to make long term plans: travel, schooling, employment, because of the level of impairment that you might be facing. In graduate school, for example, I barely made it through, my first year punctuated with a six-day hospitalization. In college, I was hanging on by a thread through my junior and senior years. I survived, but that doesn’t mean it was easy. That doesn’t mean it’s a life worth living.
“I guess I don’t perceive you as being a mess,” my mother says. “You’re very high-functioning.”
High-functioning is always the word they use for me — even through this last episode, which almost put me in the hospital, I maintained a completely successful freelance business from my apartment in New York and then, later, a rented room in Nashville. I wrote articles and read novels. I saw my friends and partner. My tutoring students never suspected anything. My various editors at different magazines never noticed anything was wrong. I refused to go to the hospital, even when it was very necessary, because I didn’t want to lose any of my jobs — explaining away a week or more of absence would have resulted in a loss of employment. And so I remained high-functioning by sheer force of will, rapidly manic or deeply depressed, calling my doctor in a panic, getting my meds adjusted and readjusted, because to stop functioning was to give up.
My ability to keep it together under pressure of mental illness comes from within. I simply don’t want people to think I’m insane. Don’t let them think you’re crazy, I tell myself, whenever I deal with mental health professionals. So in most of these interactions, I am polite, charming, and often quite funny. I emphasize my professional accomplishments. Only with my longtime psychiatrist, Dr. C, do I let the mask slip. I cry in almost every session, telling him: “I can’t do this.”
Similar to my partner, he responds kindly. “But you have to,” he says, and shakes his head.
I am cutting the Zyprexa pills in half, because they have started giving me restless leg syndrome. They make me sleep so deeply I miss my phone ringing, my partner calling to check in to see how I’m doing. “My doctor brought out the big guns, because I’m a big guns girl,” I explain to B — over the phone, when he asks me what I’m taking and why my voice sounds so slurred. He says I sound like Marla Singer. I laugh at this through my brain fog. The pills make me exhausted by nine o’ clock, and I go to bed early each night, eschewing social obligations. So be it. I’d rather be sane than have friends.
My father, weakened from the chemo, sits up one morning, gets himself breakfast. He has been in a drugged sleep for five days, unable to eat, and talking about going to the hospital again for fluids. Now he eats a piece of toast, some applesauce, half a banana — more than he has eaten in days. My mother and I are overjoyed.
I don’t know what love is until I hear that he has taken a solid bowel movement.
I don’t have a good prognosis. My father, on the other hand, has a great one: he doesn’t have to see the doctor for three months, and if his scans are good, he won’t need to go back for six months, then a year, then two years, then five, and then never again. On the other hand, I will be taking these meds for the rest of my life, although they will certainly be adjusted and readjusted as I grow and change. As my brain chemistry changes.
“It’s about circuits in the brain,” my new psychiatrist explains. “Circuits in the brain that get turned on or off, when they’re not supposed to be.”
It’s possible I’ll go into full remission again. As I write this, I have no symptoms. Instead, I have side effects. I am drowsy, my memory is poor. I’ve gained weight. This is the trade-off — you take what you can get.
Each day that I am sane, I am grateful for. Each day that I am not sick, I am grateful for.
So we get better. Slowly, but surely. It’s not a mad dash to the finish line — more like a meander, a stumble, from sick to more-or-less well. I don’t have a map. I get lost. The Zyprexa, which has certainly saved me, has also made me exhausted, cranky, drowsy. The chemo that saved my father’s life has also almost killed him. Medicine, it seems, is an imperfect science.
I know he’s feeling better when he sends me, at 11:23pm on a Friday night, after I have gone to bed, an email about suitcases. Best and Love, Daddy, he writes.
And I know everything will be okay.