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 I won’t be taking care of a baby all day anymore. I’ll be making a radio show again, which is nothing compared to being a stay-at-home mom. I try walking around without the eye patch. I get my hair cut. I plan Birdie’s first birthday party.
Then I wake up one morning and I can see again. Just like that.
I return to work after a year off, and no one knows what I’ve been through. I keep it at that. I don’t tell anyone. I get back to work and it feels great. Months later, I begin taking a very expensive drug treatment, a needle I have to inject every single day. A nurse comes to the house to show me how to do it, and The Husband sits with me and learns, too.
I read a pamphlet about how there are actually several different types of MS, including the not-so-bad type I have, called relapsing-remitting. The other main type is called progressive, which, as the name suggests, is much, much worse. After reading up on it more, I realize how strange a disease MS is, in that it can take so many forms, and the range of severity is massive. It seems like every symptom is possible, or not possible. With relapsing-remitting, the neurologist tells me, I could have another attack at any moment, or maybe not for another ten years. Or ever. There’s no way of predicting it.
“Attack” is what they call it, which sounds pretty dramatic and I’m not too sure it’s a medical term. I learn that the attack I had, with the jumpy double vision, was caused by a huge lesion on my brain stem, which is basically the comms room of your brain, controlling the flow of information between your brain and body. It’s also responsible for basic body functions, like heart rate, breathing, reflexes, and motor control.
I see the MRI of my brain and they aren’t joking: the lesion on my brain stem is massive. That big blurry blob affected the motor control of my eyes, causing my jumpy vision (called nystagmus) and the double vision (diplopia). But those things have cleared up now. The attack is over, I’m back at work, and the neurologist is convinced that as long as I take the expensive drug, I will remain in remission.
And so, there’s nothing for me to do other than continue on as normal. I feel confident that this will all be fine. I will inject a needle every day for the rest of my life and it will be fine. I could have another attack or I could be hit by a bus, the chances seem the same to me, and so I choose not to think about it too much. There is too much life happening, too much to do, too many other things to focus on. I push out any thoughts of wheel-chairs and walkers, of tremors and degenerative tissue, of growing lesions on my brain. That won’t be me! I say to myself after the allotted five minutes of feeling sorry for myself.
That won’t be me.
CHAPTER THREE
