Why Cerebral Palsy Awareness Matters

The Mighty published the article I wrote for Cerebral Palsy Awareness Day! Click here to read it.

Please wear green on March 25 (and throughout the rest of March) to show support! You can also send me your pictures or post them on What CP Looks Like.

Thanks for supporting the 17 million people worldwide living with cerebral palsy.

LOVE: The Naked Truth

I’ve always been a romantic. I love the idea of being loved and being in love, although I’ve never experienced the truly, madly, deeply kind of love. The youngest of eleven children, the baby, born with cerebral palsy, you’d think I’ve experienced familial love of epic proportions. My family is so dysfunctional, we make the Kardashian’s look completely normal – and frankly, boring.

Actually, the naked truth is this: I’ve been love starved for most of my life, which led to my fantasizing and romanticizing about the different types of love that constantly eluded me. In my world, love truly does make the world go ‘round – if only I could find it! And, the irony is, people love me – in superficial kind of way. I’m accomplished, funny, interesting, smart, and a philanthropist at heart. I’m great, as long as I have something people need or want. I always felt that I wasn’t enough; I should have been, but I wasn’t…

I’ve always been a people magnet. People are just drawn to me. Maybe it’s because they sense my authenticity. I’m a real life cliche – what you see is what you get; I wear my heart on my sleeve. Connections have always been important to me. And, I’ve got the battle scars to prove it. I’ve let people take advantage of me, loved men who didn’t deserve me. I tried too hard, pushed too much because I didn’t understand what love was and wasn’t…yet.

In 1999, I joined a Toastmasters club. I met a man who would change the course of my life over the next ten years. I finally found a place that felt like home. I met people who accepted me, liked me, and became the family I’d always wanted. I had friends, a social life, volunteer work; I enjoyed writing poetry and working out. Life was good. And, then I became preoccupied with a very charming, manipulative man. I was always intrigued by a great personality! This man became everything to me. I didn’t mean anything to him. This tale of unrequited love went on for nearly eight years – before we dated for two months, seeing each other *twice* during that time – not what I call dating, but I digress. I mistakenly thought that if I was more, did more – he’d love me more. Sadly, love doesn’t work that way. I learned the hard way. I even wrote Naked Desires, a poetry book, about my unrequited love story.

I endured subpar treatment. I accepted everything until I couldn’t do it anymore. I’m sure he thought that day would never come, but in late 2008 it did, as untimely as it was for him; he had rectal cancer and was scheduled for surgery a few days after I told him he could no longer be in my life. I stopped going to Toastmaster meetings a year before saying my final good-bye. Instinctively, I knew I could never put an end to my dysfunctional relationship if I kept going to meetings which the object of my desire also attended. I had to stop the madness. I had to get off the roller coaster of love. I had to do what I didn’t want to do, make the hardest decision of my life, which was to leave…FOR GOOD. I’d left many times before, but this time was different, it had to be different.

It’s been nearly five years. I did it! I walked away and didn’t look back. I finally loved myself more than I loved a man. I took control of my life. And, that’s when everything fell apart. My real family is struggling to deal with Mom’s Alzheimer’s diagnosis. I am Mom’s main caregiver.

On any given day, I deal with mean siblings who think I am killing her; they also think I should take care of her since I don’t work. I volunteer in a first grade class; it’s where my heart is, but my family doesn’t think that counts. Apparently, they don’t think I have a life or the right to a life. My “family of friends” is no longer there; most of them treat me like a stranger. I don’t know what happened, but the common denominator is the manipulative man; my guess is he told the others things about me that aren’t true. The irony is, all these people know his true character, so it makes no sense why they’d want to see me continually hurt by him. If my so called (ex) friends don’t talk to me because I stop going to Toastmasters…well, that is just ridiculous and wrong.

I’ve always been optimistic. I’d like to believe that my life is going to get better. I created a vision board, but staying positive is getting hard. I’m basically alone all the time. I crave true connections; finding them has proven to be a real challenge. But, I have satisfaction in my heart because I learned the naked truth about love: it *never* hurts and you can’t force anyone to love you. In the words of Alfred, Lord Tennyson, this incurable romantic believes “it is better to have loved and lost than to not to have loved at all.”