But exactly two months before my return to work, when Birdie is ten months old, something suddenly and unexpectedly starts to go very wrong.
SUCK IT UP
I’m in the middle of a soccer game when I first notice it. Man, I keep missing the ball. That pass was so wide. I keep misjudging the distance between me and the ball, between me and other players. I must be exhausted. I’m seriously off my game tonight.
It gets worse. The next day, I’m driving with Birdie, and everything in my field of vision just starts jumping around. The road looks like it’s underwater. I call The Husband and say, “I don’t think it’s safe for me to drive, you’ll have to come and pick us up.” He drives me to a downtown hospital, Birdie asleep in her car seat in the back. It’s way too expensive to park downtown, and besides, it doesn’t make any sense to bring a little baby inside an emergency-room waiting area, so he drops me off with a casual “don’t worry” and goes back home.
I sit in the emergency waiting room for over four hours. A woman is howling and cursing. A sad-looking man is pacing back and forth across the room, shoulders hunched. Another man across from me is attached to his chair with handcuffs, a police officer on either side of him. I can’t read or see the TV very well, and my eyes hurt a lot, so there’s nothing to do but close them and sit with my thoughts.
The hours pass slowly. Eventually, I see a doctor and he sends me to another floor for a CT scan. Then more waiting, more time alone, with nothing to do but worry. Nothing but endless blurry hospital life all around me.
And then I hear the voice of the doctor I just met with. I get up and try to sneak closer, hiding behind a post so I can listen in on his conversation. “Female, thirty-three years old” — I’m pretty sure he’s talking about me now — “… need to send her to you for more tests … could be, but … consistent with multiple sclerosis … more tests …”
My heart tightens. Multiple sclerosis? What is that? My mind races to remember. Is it something to do with my spine? No, no, dummy, that’s scoliosis, not sclerosis!
This makes me laugh for a second until it dawns on me. Is it that thing we used to fundraise for when we were kids? Yes! The MS Readathon! I might have that? What is it? I really have no clue what MS is at all, other than I was a top fundraiser for it in grade school, which is very unhelpful information in this moment.
The doctor does not say MS to me. He gives me a bunch of forms and says the neurology department will call me in the next day or so to make an appointment for an MRI. “Good luck,” he says, and I detect something, like a hitch in his voice? But, why? I can’t really see his face so I don’t know if it’s because things look bad for me, or because he’s a tired ER doctor.
“Thanks, I’m sure whatever it is, it will be fine!” I say.
Practically blind, with my head reeling from the possibility that I have some disease I know nothing about, I stumble along the crowded street to the subway. My eyes kill. The buildings are moving as I move. Everything I see is vibrating, and I can’t make out anyone’s face. I stare down at the sidewalk and try not to fall over, try not to cry. I take the subway, then a horrible, bumpy bus. I feel so alone, so terribly and achingly lonely. Why didn’t I take a cab? Or call a friend to come pick me up? I honestly don’t know. An hour later I get home. The Husband is on the couch watching TV.
For the next few weeks, I take care of the baby every day with everything in my field of vision jumping around like our old TV set in the seventies. It’s like watching The Love Boat on a glitchy channel. Except it’s my life, not The Love Boat at all. I’m so afraid I’ll drop the baby, so afraid something will go wrong. My eyes get worse. The jumpiness makes me constantly nauseous. And then, on top of it all, I develop double vision. I have to sew myself an eye patch, which helps steady me. How did I sew? I really don’t know.
The Husband doesn’t take a day off work. In fact, he begins teaching night school a few times a week and playing extra Ultimate Frisbee games, which means most days he leaves at 8:00 a.m. and doesn’t get home again until 10:00 p.m. I’m sad and tired. I’m finding things difficult to manage, even though I have no choice but to manage. No one is offering respite. But maybe I’m not asking?
One night he arrives home after 10:00 p.m. and I ask, “Do you have to come home so late all the time?” Even through blurred eyes I can see his body stiffen, his jaw tighten. And then he says, “You need to suck it up, Parise.”
Of course, I do. I go for MRI after MRI, test after test, doctor after doctor. And I go to almost every one of them by myself. Then, when Birdie is eleven months old, I’m diagnosed with multiple sclerosis. I’ll give him this — he was there for that appointment at least.
The timing is terrible. My maternity leave is almost over, and I’m finally going back to work. But my eyes are still all screwed up, making it impossible to see, to drive, and to read and write. The neurologist prescribes a steroid treatment. “This should clear up the problem!” he says affably.
So, every day for a week, a public health nurse comes to the house and hooks me up to an IV drip. I sit in our spare room on an old futon with the IV in my arm. I can’t read or watch TV with these stupid eyes, so I just sit alone, for an hour, doing nothing while the steroids flow into me, the taste of metal filling my mouth. It’s the only hour of my day where I’m not caring for the baby, or doing laundry, or cleaning. I’m just sitting alone in a quiet room, with a bag of drugs that will hopefully make my eyes go back to normal.
They don’t. And now my body is addicted to steroids. They have to wean you off them by giving you more, did you know that? So for two more weeks, I have to keep taking the drug, the taste of metal constantly in my mouth while my eyes bounce and shake. For two months, I lived as normally as I could with these crazy eyes. I tried to suck it up, tried to keep it together, but now that the steroids have failed, I’m freaked out. I’m starting to feel actually depressed.
I’m a journalist. How am I going to read and write all day long with these fucking eyes jumping around? How can I hide my diagnosis from everyone if I have to wear an eye patch all the time? Will I get passed over for promotions or cool special projects if managers know?
My good friend, The Practical One, sits with me one day and does what she does best — real talk. She’s the only one who seems to notice that I’m getting sadder and sadder. She starts to tell me about a woman she saw on Oprah once and I roll my jumpy eyes, but she continues. This woman had some unimaginably horrible thing happen to her, she was like, dying or something, but she continued to be upbeat and positive, inspiring everyone around her with her lovely spirit. So Oprah says, “How do you do it?” and the woman tells her she wasn’t always like this. When it first happened, she lay in bed all day crying and saying, “Why me?” But then one day, she just thought, “Enough.” She decided to give herself five minutes a day to feel sorry for herself and that’s it. Then she had to get on with it until the next day when she had another five minutes to scream and cry and throw things and then move on.
I love this idea. I say to my friend, “I can do that! I can only feel sorry for myself for five minutes a day and move on!” It really sinks into my head as the best idea I’ve ever heard. And so it’s exactly what I do. I plan out five minutes a day to feel sorry for myself. And then after that five minutes I say, It’s only your eyes. What if it was your hands? That would be way worse. Or your legs! And besides you can still sort of see; maybe there’s a modification you can do to your computer at work.
I start to make a mental list of all the ways I can deal with it, especially since