The thing with maternity leave is, I’m alone. Just me and Birdie, a baby that never sleeps during the day. I pace through the house like a stranger, looking at everyday objects and forgetting the meaning of them. Wine glasses. Books. What are those for? I can’t even imagine reading one book, why do I have so many? One day I open the bathroom cupboard and see a whole tray of eyeshadow I can’t imagine ever putting on again. And I have so many big, shiny earrings. Where on earth would I wear such things?
Eyeshadow and earrings seem like relics of a life I will never have again. Instead, life now is just a series of endless days and nights with nothing but her crying and cooing and the vast empty sound of the vast empty house. There’s no one to talk to, nothing to discuss. Each morning when The Husband leaves at eight, my heart sinks. I watch him drive away until I can’t see him anymore, and everything collapses.
I’m looking forward to July though. He’s a teacher so he’ll be off for the summer and home to spend time with the baby. Home to help me get some rest, some bearings. And since this is the thing he wanted more than anything in the world, I imagine how excited he must be for the last day of work so he can be home to care for her.
But instead, he goes on a trip. As soon as the school year is finished, he goes to Washington, DC, with a bunch of co-workers. He says he has to, but I can’t understand it — why would there be a mandatory work trip during the summer? Why would he go on a trip when it’s his very first opportunity to be home with his newborn daughter and his wife? We have a huge fight about it. And then it comes up again, and again and again. For years and years, it just keeps coming up during arguments about other things, because I can’t get over it, ever. I just can’t.
When he comes back from the trip, there’s finally some relief and I’m grateful to have a teacher for a spouse, so he can be there during the day to help carry the load. He changes every diaper, and shares the nighttime feedings with me. I’m able to get some sleep, and do things with both of my arms free. The help feels like a luxury after those long first months alone. But also, it’s just more fun with him around. We sit out in the backyard under the trees together, the three of us, a little family, picture-perfect. We go to Wasaga Beach, and I’m able to lie in the sun and swim, unencumbered, because he’s in his preferred spot in the shade with the baby. On a daily basis, he barbeques happily for friends and family who drop by to see the baby, and I feel more at ease in it all. New parenthood feels less of an effort for these two months. We are a team.
Once summer is over, it’s back to being alone in the big, empty house. Winter comes early and stays forever. Time moves slower than I ever imagined it could. I play with Birdie, I sing her songs, I feed her, I comfort her. I look at the clock and it’s only 9:30 a.m. God. I feel like maybe I will die from sheer emptiness, from the lack of people that aren’t babies or on TV. I miss my desk at work. I miss meetings and creative conversations and writing and … work. I miss work. I know being a new mom is work, but I don’t process it that way. It just feels lonely. I miss talking to my peers about music and art and books. I miss organizing and creating and discussing and laughing. I love my baby, but I don’t love being home all day long with her with no one to talk to, only laundry and making baby food to break the monotony.
I know what you’re thinking. You think I sound cold and distant, not like a mom is supposed to sound when talking about her newborn. Maybe you think it sounds like I don’t love my child. That I’m too busy thinking about myself and all that I’ve lost, instead of bonding with her. But that’s not what this story is about. I’m not here to convince you that I love her. Because I do. And that love grows with every year of her life. Every day, I watch Birdie become this funny, clever, kooky person. She fills my life with more joy than anything or anyone.
But right now I’m talking about The Baby. And I’m sorry if that seems cold, but sometimes, honestly, they’re two different people to me. It’s hard for me to reconcile The Baby and Birdie as one and the same. I was never diagnosed, because I never talked to anyone about how I was feeling, but looking back it seems pretty clear I had some form of postpartum depression. Maybe I just had what they call “the baby blues,” I don’t know for sure. But the pressure to love being a new mom, to somehow instantly know what to do and how to cope … it was real. We’ve all been fed the same new mothers are instinctually amazing at it propaganda, except I didn’t feel amazing at it at all. A lot of women don’t. Instead, I felt shame. And an indescribable sadness. So judge me, if you want, but I’m going to return there now, to those early days. Those long, endless days at home alone with a newborn baby.
I feel isolated. I’ve always lived downtown, but now I’m in this strange neighbourhood that seems so far from anything or anyone I know. Sure my friends and co-workers all came to visit me when the baby was first born, but after that initial rush, people stopped coming around. It’s 2007, so social media is barely a thing. Even the internet is a thing I have to go upstairs, turn on a big ol’ computer, and wait for. I don’t even have a cellphone! I’m finding it hard to connect with my friends.
And I’m having trouble connecting with new people I meet, too. The women with babies in my neighbourhood all seem so put together. Like they aren’t struggling with it at all. They probably are, in their own ways, but I feel like a disaster compared to them. They’re such naturals at being mothers, and they all breastfeed like it’s no big deal. They always talk about how they don’t want to go back to work. They love maternity leave. I just can’t relate. I’m so out of place with my bottle-fed baby and my tattoos. With my love of my job and the world downtown.
There is at least one thing I look forward to each week: soccer. As soon as Birdie is three months old, I return to my co-ed soccer team. I’m really out of shape, but I give it everything I’ve got. In that ninety minutes a week, when I’m on the field, I think of nothing but the game. I feel pure exhilaration — I’m competitive, physical, quick-witted.
For those ninety minutes, I feel like myself. Like the old me.
When it’s over, I go back home, sweaty and happy. Each week it’s the same: I come in the back door and The Husband is sitting on the couch watching TV. “How was the game?” he asks, and I excitedly recap the whole thing. He listens patiently and with interest. He knows I love playing soccer. He knows I’m mostly miserable these days and that once a week this is the thing that saves me. He goes back to watching his show, and I take a shower. The baby will wake up any minute now and will need my attention. I’ve got to go back to being a twenty-four-hour mom. At least until next Thursday and those blissful ninety minutes on the field.
Of course maternity leave and being a mom gets easier as the months go on. Sometimes, I even enjoy it. She’s beautiful. Her head is so perfectly round and she’s got these big blue eyes and straw-coloured hair, nothing like me with my brown eyes and dark hair. But she came out of my body, and that never stops amazing me. I sing to her. I play with her. I read her books and talk to her all day long. I get a bit better at it, the maternity leave, even though I’m counting the days until I can go back to work.
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 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
RUNNING UP THAT HILL
FINISH LINE
I don’t know where I get the idea or why, but one day in the spring of 2009, I decide I’m going to sign up for a 10K race. Other than during soccer games, and a few years on the track team in my youth, I haven’t exactly been a runner. Or at least not a distance runner. Ten kilometres is a lot of kilometres if you’ve never really run, are supremely overweight, and have had a baby and an MS diagnosis in the past year. But this is a thing I decide I’m going to do. Run 10K. Alone.
Alone Page 4
