Chapter 4: Impossible to see

The baby, the isolation and sudden blindness.
I feel like if anyone were to look at me, they'd know something was wrong. (Alone/CBC)
Listen to the full episode29:04

Birdie

This is the vignette I was most worried about people hearing. Not because of Birdie, whom I've talked to about it. She knows I'm telling stories about her and not only the good parts, but the hard parts. The two of us have great talks, and it's important to me that she knows that human beings have many sides, even her parents.

So the worry wasn't about her. Instead, I figured people would tear me apart for saying breast feeding was the worst thing I ever did. In my experience, people do not like women who say that out loud. But I will say it out loud until the end of time anyway. Come at me, bro.

I also figured there would be other people (maybe the same ones) who'd rip into me because in this chapter I keep referring to Birdie as "The Baby".

But just like I wanted to speak honestly about how much some of us hate being pregnant, or how brutal breast feeding can be, I wanted to speak honestly about how difficult and isolating it can be as a new mother, alone all day every day, suddenly caring for a baby, away from your peers and your recognizable life.

I think I say it best in the podcast. So I'm just going to transcribe it here.

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 today I'm talking about "The Baby".

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, but looking back it seems pretty clear I had some form of postpartum depression. And this is what it did. 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 say I was never diagnosed with postpartum depression, and that's because I never talked to anyone about how I was feeling. Maybe I just had what they call "baby blues", I don't know for sure. The point is, the pressure to love being a new mom, to somehow instantly know what to do and how to cope ... it was real. Whether that pressure was put on me or just absorbed into my being as a woman raised in this world, I don't know.

All I know is, if you are a new mom and feel dissociated or like you're not bonding "properly" with your baby or if you feel like an alien in your own life like I did, then don't be like me and keep it inside. Talk to someone about it. Talk to a doctor.

There are lots of resources online, like this program at Women's College Hospital (for residents of Ontario only). Find something similar in your area. I wish I had done that instead of trying to deal with it on my own.

I know being a new mom is work, but I don't process it that way. It just feels like lonely.- Michelle Parise

Talk talk talk talk to the people who love you too, because maybe they don't know new mothers can sometimes feel like aliens!

We've all been fed the same New Mothers Are Instinctually Amazing At It Kool-aid, you know? So tell them. If we don't talk about these things, how can anyone know what it's actually like for some of us?

And if you have a friend who's a new mom, go visit her right now. Hold the baby so she can have an actual shower. It will make all the difference.

Music nerd alert!

The Baby cried a LOT. That's what they do, I'm told. But we figured something out early on — any song that started with a loud drum fill would instantly silence her. The kid liked percussion!

The song that was most successful in this regard, was Young Folks by Peter Bjorn And John, so we heard it one million thousand times. Maybe more. It took me until this year to be able to hear that song again and not instantly have my body freeze up in some kind of crying baby PTSD.

Also in music news from this episode: you can hear in one section a bit of me singing Twinkle Twinkle to Birdie. That's from a little "album" of songs I made for her and The Husband as a Christmas gift in 2008. He loved it and played it all the time to her when I wasn't there.

Thanks to the lovely and talentedRyan Couldrey, here's a photo of me in December 2008 recording those songs.

(Ryan Couldrey)

Suck it up

This vignette ... man, I don't really know what to say. It takes place in the Spring of 2008, just a few months before maternity leave was up, and I was finally going back to work.

Instead, my eyes started going crazy and I was plunged into a new uncertainty. I had what they called a Nystagmus. On top of that, I also had double-vision aka Diplopia. And on top of that, I was still pretending everything was okay and not asking anyone for help and caring for The Baby half-blind and afraid.

What a stupid thing to do. I wish I could go back and tell myself to speak up more! Because the thing with your eyes being crazy, is no one can tell by looking at you that something's wrong. Same goes for when you're depressed or anxious. These things aren't as visible as a broken arm or something. That's why it's up to us to advocate for ourselves more, instead of doing what I did, which was sit around wishing the people I loved noticed that I was having a hard time and disappearing into myself. You can't wish for things, you have to act. Small learnings, I know.

Anyway, as you learn in this vignette, I was eventually diagnosed with Multiple Sclerosis. I'm not an expert, but basically there are several kinds of MS, and I was told I had the least-terrible kind. It's called relapse-remitting. The other main kind is progressive, and therefore much worse.

MS is a funny disease, if I may, in that it can take so many forms and the range of severity is massive. I'm lucky that I have really, really, really mildly-presenting MS. It's almost like I don't have it.

But when I had this first attack in 2008, it wasn't mild, it was my eyeballs! But it's been nearly 10 years now and I haven't had another. Maybe I'll have to give my membership back? Haha ... heh. Actually, according to the last neurologist I saw, I'll most likely be downgraded to having Clinically Isolated Syndrome if I hit the ten year mark without having a second major attack.

Hooray me!

I have had so many MRIs in the past 10 years, it makes me very thankful I'm Canadian and we have the healthcare system we have, and also that I live in Toronto, where there is greater access to MRI technology, compared to many parts of the country.

For my MRIs, I go to St. Michael's Hospital (the same hospital I was born in, and so was Birdie ... who says big cities aren't like small towns!) where the medical imaging lab is deep in the basement. It seems to run 24 hours. I always have my MRIs at like, 3 a.m. It's kind of cool walking down the big old hospital hallways to get to it. There's something cinematic about it.

If you want to know why I hear music when I'm in the MRI, check out this short radio doc I did for Radio One's Spark (the show I produce).

Also, I'm lucky to have the MS Clinic at St. Michael's Hospital, which is one of the largest MS clinics in North America.

With the release of this podcast and this post I just wrote, it's the first time a lot of people I know will even find out that I have MS. If you are one of those people, I'm sorry I didn't tell you before, it just honestly isn't a defining thing for me. I decided early on not to disclose, and then over time, I just got used to not disclosing. It isn't personal, and you don't have to worry about me now all of a sudden.

I was wrong

These are the words I say at the very end of the episode.

Yes, after all we went through as a married couple in this chapter, new baby, new house, MS attack and diagnosis ... we stuck it out, we got through it, we made it work, and we'd always be the couple that would be okay.

Nope, not even close.

The next episode isn't called The Bomb for nothing, folks. Kaboom!