Just for the Record.

I feel like I was blowing smoke up my own ass in that last post. I’m tired all the time. I’ve been going to the gym two or three times a week, but Adam broke his foot, so keeping that up will be a challenge.

I’m tired of constantly beating myself up or thinking I’m not doing a good enough job. The kid’s healthy and happy. The house may never be clean again, and if I’m able to see friends ever, that’s a good thing.

If I can find curtains (forget the lofty goal of making them), I’ll be happy.

If I keep singing to my son, I’ll be happy.

If I manage to roll up a character for a play-by-post D&D Game or just jump into playing Brikwars, I’ll be happy.

But I can’t do everything all at once. And that’s fine. I’m playing the long game, and all it takes to win is to not give up.

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Poetic Justice

Mommy of the Year

Well, it finally happened. I’ve discovered BoJack Horseman. I’m only 3 seasons late to the party.

I’m not sure what part of that show seems okay to watch around a baby, but truthfully, my brain is like, “It’s a non-violent cartoon. You’re good!” I’m doing my best not to binge watch — though I’m not sure it would be the worst thing in the world… just probably not the best use of time.

Whenever I watch TV these days, the kid is either on my lap, being bounced around and talked to, or is sitting on the floor in front of the TV, on his baby-safe 3/4″ thick foam mats, playing with educational toys, completely ignoring everything else. Sometimes, he sits in his rocking chair – but that’s usually when he’s sleepy.

I’ve read a lot of articles recently that say that TV for a kid who is less than 2 years old is harmful, and I have yet to see anything that convinces me that we actually need to turn it off.  The only reasons I’ve seen have been that it stops personal interaction… but 9 times out of 10 when the TV is on, I’m taking care of basic life functions. Momma’s gotta eat and use the bathroom…and sometimes, she’s gotta make the baby a bottle. He wouldn’t be getting my attention at those times anyway.

Plus, our TV acts like a big computer monitor. If I want to listen to music on Spotify (which I do, like, all the time), that screen is on. How else is he going to be able to rock out while he’s in his jumparoo?

jumparoo

Why the hell don’t they make these for adults?

Anyway, the point of this entry wasn’t to wax philosophical on screen time.  I started writing because I had all manner of thoughts and feelings while watching BoJack last night.

Who Am I, Anyway?

For those who are uninitiated to the story of BoJack Horseman: the show is about the adventures of a character actor who is living in Los Angeles years after his popular TV show ended.  It’s dark at times. It’s existential as hell.  And it makes me think about my life.

When I moved to Los Angeles in 2005, I was pretty clear on who I wanted to be.  I had an undergraduate degree in music business from Berklee College of Music under my belt, and I was attending the only law school in America that had an LL.M program in entertainment & media law. The “dream” was to work in Hollywood for the little guy — to discover the best new music out there and help make sure the artists didn’t get screwed by bad contracts. I also thought it might be fun to help people make indie movies.  And if that didn’t work out, I wanted to be an agent.  Essentially, I was hoping to be Princess Carolyn — the kind of no-nonsense workaholic that makes the entertainment industry run.

you_ve_gotta_get_you_sh_t_together__by_forty61-d955eub

Being a mommy has its perks and its annoying bits — but more often than I’d like to admit, I find myself looking at my son (who is inevitably either covered in some bodily fluid or grabbing at whatever wire he can find), thinking, “Is this really my life? Is this who I am now — the girl who wipes up poop, constantly gets screamed at, and spends her whole day focused on the happiness of a person who can’t even verbalize his needs?”

really

In short, I momentarily feel sorry for myself because my baby is a baby, and being a mommy is a tough gig.

When I was watching BoJack yesterday, though, I had to laugh a little… because I realized that, really, I’m feeling the exact same frustration that I would have had if my life had never veered off course because of MS and seizures… and there’s a sort of poetic justice to that.

I mean, entertainment attorneys are constantly cleaning up someone else’s messes and attempting to care for emotionally fragile artists who can’t adequately communicate their needs. I didn’t mean to, but apparently, I’ve been preparing to be a mother my whole life. This is pretty much what I was made for.

Put stuff back

I love my job… I love my job… I love my job.

Don’t get me wrong — the show makes me nostalgic as hell. I miss Los Angeles.  I miss my friends from there, and all of our wacky shenanigans. I miss the beach and the farmer’s markets and being able to tell myself I’m going to a bar or a party for professional reasons… and I desperately miss the smug feeling of superiority that comes with thinking, “I’m actually part of the entertainment industry.” (Translation: “I am cool, and my taste as an artist/taste-maker matters.”)

And sure, since I’m writing a blog for entertainment purposes, I could try to cling to that feeling… but let’s be real, I have a very small audience, and I’m fine with that. Happy about it even, because it means both that I have no need to be fake or to shill anything, and I know that the folks who are reading genuinely care about me.  (Love you, Mom! Love you, Adam!)

Role-Modeling Like Woah.

The only frustrating question that I haven’t been able to shake is this: How do I teach Henry how important it is to follow your dreams if my only aspirations are to see him (and hopefully his future siblings) grow up healthy and happy, and for our family to flourish?

flourish

Best as I can figure, the only way I can be the role model for Henry that I want to be is to make personal growth a priority. Regardless of how much time mommying takes up, (and it takes up most of my time) I’ve got to make time to do all the things that make me, as an individual, think I’m cool.  I can’t forget who I am.

I’ve got to keep singing and writing songs and listening to new music. I’ve got to keep learning. I’ve got to make myself practice guitar and piano, no matter how much my loss in skill feels like a punch in the gut, and I’ve got to spend the money for fabric and sew, because I want to make curtains and clothes.  I’ve got to spend more time in the kitchen cooking healthy recipes that sound delicious, because variety is the spice of life. I’ve got to set aside time to write every day, and I’ve got to keep working out. I’ve got to play more games. I’ve got to cultivate whimsy.

But more than any of that, I’ve gotta show him (and myself) that seizures shouldn’t get more attention than they deserve, and that I’m still me. I’m still awesome and fun. I can still be someone I like.

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7 years ago, near constant seizures ripped my life to shreds and stole my identity. I spent years on the couch or in bed, afraid of hurting myself. I stayed out of the kitchen and away from knives. I stayed away from the gym or even working out at home because I was afraid of overheating.  I stayed in the house because I was afraid of seizing in public, especially if I was alone.  Well, I don’t have the time or emotional energy for that fear anymore.  I’m done with it.

The question isn’t whether I’m going to seize or not, anymore. It’s how I’m going to handle it when I seize, randomly. It’s sitting with the knowledge that it’s going to happen almost every day, sometimes multiple times a day. It’s accepting that neither the doctors nor I have any idea what causes them or how to make them stop. It’s become about gracefully enduring them. I’ve started to think of them as long, annoying sneezes or farts.

responsible

I’ve done a lot of work to get to the point where I can continue having a good day even when dealing with post-ictal confusion. I’ve got protections in place like an ID bracelet, a playlist of songs that helps bring me back up to date, and I don’t hesitate to sit down whenever I need to. I have alarms on my FitBit to remind me to take my medicine twice a day, every day. I’ve got email reminders to eat breakfast and lunch. I’ve got more than one “in case of confusion” letter written to myself, stashed in more than one location. I’ve taken responsibility for my happiness.

So now, it’s time to stop giving the seizures more attention than they deserve and instead give that attention to myself and my family.

Sore and Thoughtful

A good kind of sore.

20151113_152709Sweet baby Jesus on a pogo stick, am I tired.

Last night, I attended my first aqua aerobics class. Sore does not begin to describe how my abs feel today. And that’s a good thing. Recovering fully from a c-section means working hard to regain some semblance of a pre-pregnancy figure. Without this sort of exercise, it wouldn’t be possible. I need to get stronger! I feel very lucky to have a yoga class on Sundays and aqua aerobics on Tuesdays that I can attend.

It’s really nice to be able to be around some new people and to challenge my body. I’m also glad that it gives Henry the opportunity to socialize with other kids at the gym’s child center. Too much time alone in the house with Mommy can’t be good for his social development.

According to the folks there, he’s always well behaved, and he likes to interact with the other babies. He only seems to cry when he’s the only infant in the baby corner.  I don’t blame him. It can’t be fun to be the only baby sequestered in the baby area when there are toddlers so nearby.

I can has hibernation?

It’s storming outside today and quite dark.  All I want to do is to give in to the MS fatigue and sleep all day — but Henry’s got other plans.  He needs my snuggles and attention, and I’m happy about that.

Fortunately, he’s napping right now, so I have a moment to write. Part of my brain says, “THEN YOU SHOULD BE NAPPING TOO!” but I took a 5 Hr Energy about an hour ago, so that’s not gonna be happening.  Hopefully, tonight I’ll get some good sleep.

Thoughts I can’t keep to myself.

But none of that is why I’m writing right now.  Honestly, there’s something on my mind.

Today, I hid a lot of friends on Facebook from my newsfeed. I considered unfriending, but decided against it because I care about these people.  I was just sick and tired of seeing folks politicizing the Syrian refugee crisis for their own egotistical gains. I was tired of seeing photos of dead toddlers and babies having washed ashore — sometimes in an attempt to remind us that not allowing refugees into our country makes us responsible for some of these deaths, and sometimes in an attempt to vilify and dehumanize the refugees for bringing their babies with them in the first place, when it’s so dangerous to travel the ocean.  Seeing those pictures made me break down and cry. And I don’t cry easily.

20151118_092343Empathy — it’s a thing.

When you have a small child who is the absolute center of your world, imagining, even for a moment, what you would feel like if you were to see your child face down in the sand, is intensely painful. It’s gut-wrenching and tragic in a way that folks who haven’t had babies can’t fully understand, because the raw emotions that exist were born with your child.  They didn’t become a part of your emotional lexicon until you protected that baby with your very life for months at a time.

To be honest, I don’t see how any parent can see a dead baby in the sand as their own child, and not want to offer hospitality to the mourning parents. I can’t grok the idea of being so cowardly or dead inside that you’d be more afraid of the potential terrorist on the boat with them than you’d be afraid of more of them feeling that sort of loss.

Maybe I’m a little jaded, since I live in a Chicago suburb.  I mean, more than 200 people died in the first half of the year alone here just from gun violence.  There were no terrorists causing that. It’s 100% good ole American murder.  And yet, it’s the exact same folks who are afraid of people who are fleeing genocide that advocate for every American adult to concealed carry a firearm.  I don’t understand that level of cognitive dissonance.

Funny enough, in March, ISIS released a “kill list” of cities that they want to see demolished, and Orland Park, IL made the list. Not Chicago, mind you, but our blissfully low-crime neighborhood. Some folks are in a tizzy about it.  I, on the other hand, am kind of tickled, since there is such a big Islamic population in our area already, and we moved out here to be safer than in “Chiraq,” where more than 50 people can die in a weekend when the Cubbies are doing well.

This whole situation just makes me shake my head. At the end of the day, the questions you’ve got to ask yourself are these: (1) Do I want to live in fear? and (2) Do I want to keep an open heart?

I think that the only way that terrorists ever win (regardless of their race, creed, or nationality) is when we become the xenophobic, violent scaredy cats they want us to be. And I refuse to be manipulated by them.

So, I’m going to continue to make sure that my son spends time in playgroups with children of all sorts of belief systems. I’m going to help contribute to the welfare of refugees through reputable charities, and I’m going to increase my efforts to become involved in my community. I’m going to go the extra mile to keep my heart open and not be afraid.

Because whether or not I do those things, pain is coming. Everyone gets hurt in life. Everyone dies eventually. Whether it’s ISIS or cancer or multiple sclerosis or high cholesterol – SOMETHING is going to get you. That’s just how life is. And it’s my job to teach Henry how to live well anyway.  Being angry and hateful and scared because some folks don’t agree with your way of life? Well, that’s just not a good option.

Do It Anyway.

My drooly dragon on Halloween.

My drooly dragon on Halloween.

Hard to believe it, but Henry’s 6 months old now.  Right now, I’m lucky enough to have a moment to write because he’s taking his morning nap.

Today, I was published on another blog — Modern Day MS. I wrote a piece about how to improve your sex life, since the great majority of folks with MS have to deal with sexual dysfunction at some point.

Surprisingly, the hardest thing about writing that guest post was keeping my word count down!  There was so much more I could have written about because, let’s face it, there’s a lot of great information out there about having good sex.

One thing that surprised me was how much it helped to have a specific audience to write to, though. I think one of my downfalls here on In It For The Parking is that I have made this much more of a personal journal and much less of an MS-centric blog.  Ah well. If I cared about making money from my blog it might matter, but I don’t. It’s not why I write here.

So About That Title…

You may have noticed that the title of today’s blog entry is, “Do it Anyway.” It’s the title of one of my favorite Ben Folds songs, and has become a huge part of my current way of being.

Being a mom is tough. It’s especially tough when you have seizures and sometimes don’t have an aura. It can be really scary.

For years — way too many years — I spent my days on the couch and didn’t do a whole lot because I was afraid of hurting myself. I didn’t cook. I didn’t exercise, for fear of falling off a machine or embarrassing myself. I didn’t leave the house without someone else.  It’s only in the last 2 years that my seizures subsided enough for me to be brave enough to go out in public alone.

And now, as a mom, sitting on the couch and hiding from life really isn’t an option. So, I take the kiddo on walks to and from the store. I carry him up and down stairs. I have begun cooking again, and today, I think I might even be brazen enough to try to shower while my husband’s at work. (It smells like a good idea.)

There were a lot of people who asked me why I wanted to have children, and whether or not it was safe. They suggested that it wasn’t a good idea because they were worried about how I would take care of the kids and deal with my condition.  My response to them was always that I wasn’t going to let MS steal motherhood away from me.  So, even with all the fear, we did it anyway.

Why? Because one of the biggest, most important things I’ve learned is that even if you’re afraid, you need to do things anyway.  Sometimes, the more afraid you are of something, the more important it is that you do it.  That’s why bravery is a virtue.

Do I seize when I get overheated? Yeah, every time.  But the dishes? Those need to get done anyway. And this body? It doesn’t like carrying this much extra weight, so exercise is going to happen.

Don’t get me wrong — I’m not trying to cause seizures. I’m learning how to do things despite them.  For instance, it’s safer for me to swim (because it keeps your body cool) with Adam than it is for me to try to run on a treadmill. It’s safer for me to soak dishes in the sink and rinse in tepid water before putting them in the dishwasher than it is to use hot, soapy water. And it’s safer for me to keep the house at a crisp 68 degrees and only carry Henry for a few minutes at a time than it is for me to be afraid to pick him up.

For a long time, I thought that Kayla Montgomery was insane.  I mean, who wants to run races and trigger pseudoexacerbations over and over again, falling into her coach’s arms at the end of each race, just so she can keep running?  It sounded insane to me. But now, for some reason, I get it. She knows that someday, she’s not going to be able to feel her legs. She’s making the most of every moment she has control of them, and refuses to let this disease take any more from her than it absolutely has to.  And that takes a lot of guts.

I’m more than a little ashamed to think about how much time I wasted because of fear.  Sure, it was legitimate fear, but it was also depression. It wasn’t just that I wouldn’t push myself, I couldn’t. After failing the bar exam twice, I didn’t see the point of trying anything anymore. I didn’t want to find my physical boundaries, because I didn’t want to get hurt.

But, that’s pretty much what life is — getting hurt and getting over it and learning new ways to be… over and over again.

I’m tired of the internet being my only social outlet (aside from seeing my in-laws). I’m tired of defining myself by this disease. I’m tired of wallowing in how tired and/or afraid of seizures I am to the point that I allow myself to not be ambitious. It’s a waste. Not only of my potential but of the time I have here to enjoy life.

So, I’m fucking tired and scared. That’s great. It means I’m human. Big deal. Do it anyway; whatever “it” is. Acknowledge the fear and move forward thoughtfully.

Today, “it” is writing this blog entry and doing whatever I can to get up and be active. I can’t let my son learn that being an adult is comprised of sitting on your butt staring at a screen all day long every day. I won’t. Unfortunately, we can’t go to the gym today because the little guy is sick, and they’ve got rules against bringing sick kids to the gym.  So, I think I’m gonna walk to the store and get stuff for dinner and return a toy that I wish I hadn’t bought. (Toys with lights and sound aren’t always the best idea. Gotta find the right ones.)  Don’t worry, I always wear my medical alert bracelet and have an ICE app on my phone in case I seize in public.

If, at some point today, I’m able to vacuum the living room, make the MRI appointment I keep postponing because I’d rather not know how my MS has progressed without DMDs, and find a good dentist in the area, I’m giving myself all kinds of bonus points. Mostly because I don’t want to do any of that, but it all needs to be done.

So, I’m going to do it anyway.

Do-It-Anyway