Mania

After reading through Manic Mother it occured to me that despite my original intentions, I never really touched upon the topic of bipolar and how it has effected my life. I think that that is partly because so many of the decisions I have made while in a manic state have been, well, embarrassing. Many people have the idea that those of us in the bipolar community are these crazy balls of spontanious anger and that, for me, is entirely untrue. As a matter of fact I find it difficult to become angry. Instead in my most manic of phases I feel the need to do. I start projects, sometimes silly, sometimes huge, sometimes completely out of my leaugue. I've made 55 pieces of felt fruit by hand, baked an entire freezer full of breads, muffins and cookies, created web sites that I've never touched again, made huge elaborate meals for only 2 people, you get the idea. This is the lighter side of my mania. It gets darker, much darker.

When in these phases its not uncommon to be caught up and carried along doing things you would never otherwise do. I've done some things I look back on now and absolutely cannot understand. Getting a tattoo on my forearm for example. Not a big deal but wow, it's terrible work! WHY did I do that? At the time, it was a fantastic idea. At the time there were no alarm bells going off for me. That's the thing, when we do these things without batting an eyelash it's because we truly feel they are super good ideas. Later, when you come back down, reality comes crashing back down around you and you're left thinking, "What the hell have I done?".

When my bipolar started to get bad, the worst it's ever been, I began to hear things. Yes, I know how crazy that is. In my manic state I heard whispers, I was suicidal, I was terrified and completely off my rocker. Convinced that evil things were about trying to hurt me. This was when I decided to turn to medication and you know what? It worked. That was a mercifully short period of my life, these things happened because other factors aggravated my existing problem. I've since learned the value of seeing the triggers as they happen and taking steps to stop the snowball effect. I've learned maintenance for my life to keep myself emotionally, thus mentally, happy. Healthy foods, moderate exercise, the permission to myself to talk about the things troubling me; these simple things have allowed me to live a med-free and thankfully event-free life (bipolar-wise) for years now.

I think people like Beth over at Manic Mother are doing us all a great service by talking about their illness and thusly educating others so that people like myself can reap the benefits. I hope my posts does the same.

No, I'm not okay. Thanks for asking.

Ah yes, an even deeper foray into the life of yours truly. You see, my 8 year old son has Muscular Dystrophy. This isn't usually a conversation starter for me but this is a blog, and it seems that as a blogger, it's my duty to peel back the layers and expose these bits of my life. So there you have it. My 8 year old son has Muscular Dystrophy. Infantile Onset Facioscalpialhumoral Muscular Dystrophy actually. This means that my young child over the last 2 years has lost much of his ability to walk, see, hear and has a complete palsy of the face. This means that because of about 100 doctor's appointments this year I've had to remove him from school to save him the embarrassment of failing the second grade. (However, this has turned out to be a boon for us. I'll blog more on this later.) This means that he must wear, on a daily basis; glasses, hearing aids, AFO's (leg braces) and let us not forget the oh-so-stylish gauze dressing on his feeding tube. Then of course there is the ultimate accessory, the wheel chairs.
It's a funny thing when you have a child with issues like these who can't leave the house without a truck load of equipment and who, everyone knows, will never get better. People ask the same thing over and over. "Are you okay?" Funnier still is the reaction we parents are expected to give. "Yes, I'm fine!" and "there's a reason for everything", or "I was only given the challenge because I could handle it". Most people don't ask you this question expecting to hear the truth. My truth? My truth is that no, I'm not fine. I'm pissed off. I'm pissed off that my child is being given such a raw deal. I'm pissed off that he has the grace to except it and that I don't. I'm pissed off that I worry every day about him and I wonder relentlessly if he'll ever be able to live on his own, have a lover, travel somewhere fabulous, father a child, live in a dorm, kiss someone, and and...
I'm coming to understand that it's okay to not be fine. I am always fine when I'm with him. I'm always together when we see his doctors, I rarely let myself not be "fine". But every once in awhile, when I'm all alone, I give in. I let go. I cry, I scream, I throw things and at those times I yell to no one and to everyone, "NO! I am NOT okay!" and you know what? I'm okay with that.
Here's the thing. I'll never be "okay" with this. I have, however, learned so much from this child and from this disease. I have learned patience, righteous anger, the true meaning of beauty, I have learned that I can be a kick-ass mom and that I have more strength than I ever though possible. That John is a fantastic father and that together, we can handle anything. I have come to understand that my son is incredible. He is the most adaptable being I have ever met and my heart bursts with pride when I think of how he has come to live with his ever-weakening body with acceptance, grace and with just enough of a stubborn streak to refuse to take this lying down.
Am I okay? No. Am I getting there. You bet your ass.

Ghosts

Have you ever wondered where you went? I mean, you, the one who wrote poetry and sipped away half a dozen glasses of wine every night; the one who looked in the mirror and never did a double take and wondered, is that me? Sometimes when I’m knee-deep in finger paints and dinosaurs and peanut butter and jelly bran muffins it will hit me. Who am I? Am I mom, am I lover, am I poetess, am I housekeeper, cook, dutiful wife…? Or am I artist, writer, vixen, girlfriend, scatterbrained girl…? In the place of my Arcade Fire and ToriAmos is the “My Friends Tigger and Pooh” theme song. In the place of my favorite leopard print skyscraper, fuck-me heels and kiss-me-so-it-shows-red lipstick is yoga pants and chapstick and bare feet with a smattering of clear polished toes. French press to Folgers in a plug-in and lovely artichokes to frozen carrots.
Eleven years of motherhood and I’m still seeking this elusive balance. I find it difficult not to turn my whole self over to the job of motherhood and surrender all that makes me myself to my children. Like so many other mothers out there I find I’ve given some of the best parts of myself up to be what I think they need me to be. But at what cost? Is it really better for them to have a shadow of me than ME? Perhaps I can’t be this “mom” in my head but should I even have tried? Looking back I wonder if I had more to offer children than I thought. I mean really, this is a sacrificial practice we mothers commit. We bleed our former selves dry at the alter of perfect parenthood. Somehow, our kids will suffer if we don’t implode a little, learn to love fish sticks, give our beauty and youth over to dirty diapers and homework and our sexuality to bathrobes and exhaustion.
My question is this, what does all of this leave us to give them?
I love Ginsberg, I love the way he weaves words together and the first time I read Sunflower Sutra it left a tattoo on my heart. At 16, just discovering how powerful a person’s words can be I was left awe-struck by how someone who lived as his whole self could affect the way I would think and live and imagine. Forever. Someone I didn’t and wouldn’t ever know. Just the words he shared have shaped so much of me. Here I am, in charge of helping to shape the minds and souls of my children and I’ve come up short. I truly believe that to be happy you must be yourself. I tell my son all the time that he has everything in the world to offer, simply by being him and I’ve dropped the ball by example.
So what to do? Maybe the time has come to evaluate myself and who I’ve become. Why can’t I wear my heels and share my love of roasted brusselsprouts and shark-fin soup and poetry and Frida and put on my lipstick to home school and help them to be themselves completely. By being myself.
Completely.