In years past, I would spend time every December 31 writing a list of things I would either give up for the next year or vow to start doing. And like all resolution-makers, I would charge forward into the New Year like some version of She-Ra, blade held high to kick the New Year's ass. And, also like most resolution-makers, that blade of promise got heavy after, oh, about three weeks and I would give up, return to my old ways, and feel disappointed in myself. Disappointed that I wasn't strong enough to make "real" change in my life. Instead of the New Year bringing an opportunity for hope, it brought a sense of: Dammit. I'm up to my old tricks again. Why can't I just get this being perfect thing right?
And so, a few years ago I ditched the resolution-making. Instead of resolving to change something about my current self, I've begun to use the end of the year as a time to reflect on the good parts. How the previous year has changed me rather than me changing it.
2012 has been spectacular. The best year of my life by far. Not because of some external circumstance but because of the internal ones. The ones that matter more. This past year was the year that I began to love the person that I am. Flaws and disability and all.
Don't get me wrong. I still nag at my own self all the time. That's human nature. We all do it. About others but especially about ourselves. Judge, judge judge; belittle, belittle, belittle. You know, that voice that says if-everyone-knew-this-about-me-they-would-run-the-other-way.
Today, for example, I inhaled my lunch in four minutes. Literally. Food hung out of the sides of my mouth as I shoveled more in. And I did think to myself, Gee, Heather, you really should slow down. This is pretty disgusting. I am a fast eater. It's such a nasty habit. And I made a mental note to practice eating more slowly so that I don't freak out my next date.
Part of the self-acceptance has come in accepting all parts of myself without (too much) judgment. Even the part that eats her food like a starving crocodile. And I'm happy to report that in the loving myself, changes have happened naturally--without my needing to pummel and punish myself into some new shape. Some better version of me. The changes have been slow-growing, but I find myself on the other end of this year a completely different person than I was at its beginning. There is a new hope inside of me. A sense that I deserve greatness. Not in a selfish way. In the way that I finally get it. I finally get what I'm worth. I finally get that I have all of these gifts and talents and, most of all, love to give and be appreciated for. Just like we all do.
And so I look forward to 2013 and the gifts that it will bring. And I wish for you, dear reader, a year of abundance and joy.
Monday, December 31, 2012
Tuesday, December 25, 2012
Smiling is My Favorite
Last night I watched the movie Elf for the third time this Christmas season. And as I sit now on my couch, I am fighting the urge to watch it again. I love that movie. So much. And as I've thought about why over the past few days, I realize that what I love about it is Buddy the Elf's chid-like optimism. For Buddy, life is one big reason to smile. And, to him, everything is fresh and full of promise. He never lets the grumps get him down.
Sometimes it seems the longer we live, the more un-Buddy-like we get. The world and all of its suffering grates on our once quick-to-smile selves, leaving us worn down and a lot less shiny.
The past month has been filled with suffering.
And it's hard in this day and age, with the media making its money on the tragedy of the world, to see through the fog. Hard to see the joy.
I have to be honest. In my past, I have sometimes struggled to see the bright side. You know, the Silver Lining. Although I considered myself a fairly content person, in every day situations, I often felt pressure to put a negative disclaimer on my experiences. You know, the-coffee-was-delicious-but-I-can't-believe-I-spent-four-dollars-on-it syndrome. I had become--dare I say it?--jaded.
Especially during the holidays.
The holidays were rough. Rather than them being a time for me to celebrate my beloved family, they were a time for me to wallow in self-pity for my single-hood. Poor Heather. Everyone else all cozied up with their honey and me stuck in this perpetual childhood, spending the holidays at my sister's house because she was the one with a husband and a child. She had grown up. Happiness (which I used to equate with couple-hood) was for everyone else but not for me. In my mind, somehow I had done something wrong and had been forever cursed.
I'm more than happy to report that this Christmas has been different. Despite all of the world's suffering, I am seeing it through more Buddy-like lenses.
In this time of wondering how people could commit such atrocities, I've become more attuned to the kindnesses people commit.
And in my chance to grieve for the pain in the world, I've gained a recognition of the power of optimism. Not to push the pain aside and pretend it doesn't exist. But to feel it. To empathize to the best of our abilities. That somehow through all of it, our hearts will be made better. Because now we are realizing how important it is for us to be connected. Truly connected.
To hug a little tighter.
And say I love you a little more often.
And maybe follow Buddy the Elf's optimistic words: I just like to smile; smiling's my favorite.
And just wait and see what happens.
Sometimes it seems the longer we live, the more un-Buddy-like we get. The world and all of its suffering grates on our once quick-to-smile selves, leaving us worn down and a lot less shiny.
The past month has been filled with suffering.
And it's hard in this day and age, with the media making its money on the tragedy of the world, to see through the fog. Hard to see the joy.
I have to be honest. In my past, I have sometimes struggled to see the bright side. You know, the Silver Lining. Although I considered myself a fairly content person, in every day situations, I often felt pressure to put a negative disclaimer on my experiences. You know, the-coffee-was-delicious-but-I-can't-believe-I-spent-four-dollars-on-it syndrome. I had become--dare I say it?--jaded.
Especially during the holidays.
The holidays were rough. Rather than them being a time for me to celebrate my beloved family, they were a time for me to wallow in self-pity for my single-hood. Poor Heather. Everyone else all cozied up with their honey and me stuck in this perpetual childhood, spending the holidays at my sister's house because she was the one with a husband and a child. She had grown up. Happiness (which I used to equate with couple-hood) was for everyone else but not for me. In my mind, somehow I had done something wrong and had been forever cursed.
I'm more than happy to report that this Christmas has been different. Despite all of the world's suffering, I am seeing it through more Buddy-like lenses.
In this time of wondering how people could commit such atrocities, I've become more attuned to the kindnesses people commit.
And in my chance to grieve for the pain in the world, I've gained a recognition of the power of optimism. Not to push the pain aside and pretend it doesn't exist. But to feel it. To empathize to the best of our abilities. That somehow through all of it, our hearts will be made better. Because now we are realizing how important it is for us to be connected. Truly connected.
To hug a little tighter.
And say I love you a little more often.
And maybe follow Buddy the Elf's optimistic words: I just like to smile; smiling's my favorite.
And just wait and see what happens.
Tuesday, December 4, 2012
Shedding Skin
When I was a kid, I spent a lot of time doing tomboy-ish activities. I played with Matchbox Racers, rode on the neighbor's skateboard (literally sat on it and pushed myself up the street), collected bugs, built forts. Perhaps my favorite tomboy-ish activity from my childhood was playing in the mud. My sister and I would squat in the little patch of dirt underneath the kitchen window or in the vacant lots up the street, add some water, and dig in. Like little elephants, we found healing in the clay that coated our skin as we packed it into small cakes. Little cow patties of dirt.
In this grand time where we spent most of our time outdoors (what a concept in today's glued-to-the-screen era), we were one with nature. Insects, spiders, hummingbirds, lizards. Before my neighborhood was fully built-up, although we never saw snakes themselves, we would find pieces of shed snakeskin. Paper-thin. Indented with phantom scales. Evidence of change. Evidence of growth.
Lately, as I've changed and become more comfortable with my authentic self, there are parts of me that have outgrown my former skin. The old skin has become stretched tight. Restrictive even.
As I begin to accept who I really am and let go of who I thought I should be, I realize that some paradigms I've established for myself are no longer working.
I used to thrive off of people-pleasing. This, I believe, is a curse for many, if not most, women. We spend our time sacrificing ourselves for the sake of others' happiness, not necessarily because we believe it will make us happier to do so, but because we either believe it is what we are supposed to do or we believe that it will somehow make us appear more feminine and worthy.
Don't get me wrong. I still believe in honoring the people in my life. They are amazing, lovely, supportive people. But I no longer believe that honoring them means sacrificing myself. And those people who do not fit the adjectives above, no longer fit in the space of this newly-expanded skin of mine.
I've also lived a life where I have hidden my disability. In this former life, before I shed the skin of shame, I would do whatever I could to mask the outward symptoms of MD in hopes that I could keep the ruse up, make people love me for my winning personality, and then tell them my shameful truth. Inwardly, though, the whole time I just waited for the other shoe to drop. For that moment when I would have to make my grand confession before the jury and wait for the verdict of whether or not the other person would stick around.
I've especially done this in my dating life.
Not being myself is exhausting.
I'm happy to report that I have officially shed this oh-so-painful skin. It's been a gradual process. This weekend, though, I experienced some real evidence of this growth. I went out with a friend and met a nice gentleman who happened to have a puppy outside waiting for him. Well, those are two things I cannot resist. Let's face it, the puppy would have been enough. When we went out to see it, I was faced with a quandary. The baby Viszla was at the bottom of a flight of stairs.
The old me would have stood at the top of the stairs and oohed and aawwed from up there. But I knew in that split-second of a moment that I had a skin to shed. I had a new me to show. So I did it. I climbed down the stairs. Right in front of him. And the even bigger moment of skin-shedding came when it was time to climb back up them. Me climbing stairs is about as graceful as a horse on a highwire. The old me, making some excuse about having a bad leg, would have let the cute guy go ahead of me so he wouldn't have to watch me do the dirty deed.
I'm so proud to say that I didn't give in to my old habits this weekend. I took a deep breath and climbed the damned stairs ahead of him. And I told him what I have. Said the words clearly without the inkling of a stutter. Muscular Dystrophy. And even though the inner child in me cringed a little and waited in that hair's breadth of a moment for rejection, I knew that I was doing right by honoring myself. And guess what? He didn't even flinch. He just asked if it hurt. And then continued flirting with me.
This newer version of me was partly inspired by a TED talk I saw this summer. I If you haven't yet seen this TED talk on vulnerability, please take a few minutes to watch it. It's had over six million hits. Six million. That number speaks volumes to our need to understand what makes us tick. Our need to be ourselves and be loved for exactly that. Not the ourselves that we force ourselves to be. Not the ones with the too-tight skin but the ones with the old skin sliding off.
In this grand time where we spent most of our time outdoors (what a concept in today's glued-to-the-screen era), we were one with nature. Insects, spiders, hummingbirds, lizards. Before my neighborhood was fully built-up, although we never saw snakes themselves, we would find pieces of shed snakeskin. Paper-thin. Indented with phantom scales. Evidence of change. Evidence of growth.
Lately, as I've changed and become more comfortable with my authentic self, there are parts of me that have outgrown my former skin. The old skin has become stretched tight. Restrictive even.
As I begin to accept who I really am and let go of who I thought I should be, I realize that some paradigms I've established for myself are no longer working.
I used to thrive off of people-pleasing. This, I believe, is a curse for many, if not most, women. We spend our time sacrificing ourselves for the sake of others' happiness, not necessarily because we believe it will make us happier to do so, but because we either believe it is what we are supposed to do or we believe that it will somehow make us appear more feminine and worthy.
Don't get me wrong. I still believe in honoring the people in my life. They are amazing, lovely, supportive people. But I no longer believe that honoring them means sacrificing myself. And those people who do not fit the adjectives above, no longer fit in the space of this newly-expanded skin of mine.
I've also lived a life where I have hidden my disability. In this former life, before I shed the skin of shame, I would do whatever I could to mask the outward symptoms of MD in hopes that I could keep the ruse up, make people love me for my winning personality, and then tell them my shameful truth. Inwardly, though, the whole time I just waited for the other shoe to drop. For that moment when I would have to make my grand confession before the jury and wait for the verdict of whether or not the other person would stick around.
I've especially done this in my dating life.
Not being myself is exhausting.
I'm happy to report that I have officially shed this oh-so-painful skin. It's been a gradual process. This weekend, though, I experienced some real evidence of this growth. I went out with a friend and met a nice gentleman who happened to have a puppy outside waiting for him. Well, those are two things I cannot resist. Let's face it, the puppy would have been enough. When we went out to see it, I was faced with a quandary. The baby Viszla was at the bottom of a flight of stairs.
The old me would have stood at the top of the stairs and oohed and aawwed from up there. But I knew in that split-second of a moment that I had a skin to shed. I had a new me to show. So I did it. I climbed down the stairs. Right in front of him. And the even bigger moment of skin-shedding came when it was time to climb back up them. Me climbing stairs is about as graceful as a horse on a highwire. The old me, making some excuse about having a bad leg, would have let the cute guy go ahead of me so he wouldn't have to watch me do the dirty deed.
I'm so proud to say that I didn't give in to my old habits this weekend. I took a deep breath and climbed the damned stairs ahead of him. And I told him what I have. Said the words clearly without the inkling of a stutter. Muscular Dystrophy. And even though the inner child in me cringed a little and waited in that hair's breadth of a moment for rejection, I knew that I was doing right by honoring myself. And guess what? He didn't even flinch. He just asked if it hurt. And then continued flirting with me.
This newer version of me was partly inspired by a TED talk I saw this summer. I If you haven't yet seen this TED talk on vulnerability, please take a few minutes to watch it. It's had over six million hits. Six million. That number speaks volumes to our need to understand what makes us tick. Our need to be ourselves and be loved for exactly that. Not the ourselves that we force ourselves to be. Not the ones with the too-tight skin but the ones with the old skin sliding off.
Sunday, November 25, 2012
Peek-a-Boo
I've always loved a game of peek-a-boo with a baby. They are so adorable. How they really believe that when your eyes are hidden by your tricky, face-stealing hands that you have actually disappeared. And the look of pure joy on their faces when you suddenly reappear. As if in those two seconds when your eyes were covered, you were completely lost and the baby is so happy to see you again. This human-to-human acknowledgment--this I-can-see-you--is such a powerful force. In a peek-a-boo game with a baby, you would never rob them of your reappearance by keeping your eyes hidden. You know that this would cause distress and distrust.
There are compartments of my life with which I often play an adult game of peek-a-boo. In these games, rather than covering my eyes and then uncovering them, I remain frozen in some sort of stop-motion. My hands covering my eyes. My eyes, even though shielded by my hands, squeezed tightly shut to totally block out these sometimes painful realities.
One compartment I shielded myself from for years was my weight. Up until about three years ago, I was a five-times-a-day weigher. I weighed myself first thing in the morning, naked. Then again after I put my clothes on to see how many pounds clothing added. Then after I ate breakfast to see how much I gained by eating a meal. Then again when I got home from work. And again before bed... And after I went to the bathroom (yes, number two.). My obsession with my weight a proverbial albatross hung around my neck. It determined the day's fate. Whether it would be happy or it would be cursed.
After years of living this way, I decided enough was enough and I threw away my scale, a both liberating and terrifying move. I tried to trust my body and be kind to it, all the while fearing food, and, more than that, fearing that the tightening of my waistband was indeed because of a rising of the number on the scale that I no longer owned.
I fooled myself into thinking that this liberation from the daily check-in was a liberation from an obsession with weight. But this wasn't true. I still worried. A lot. Any time I went to the doctor's office, the only place I had to step on a scale, I turned around. Although my clothes kept getting tighter, as long I stayed in blissful ignorance about the actual number, I believed that it was within a moderate range of what it used to be. Until last February. I had my annual physical and the physician's assistant, who has the tact of a wart hog, walked in and said, "Well, your weight's up to #@$" (insert whatever number you consider astronomical.). I couldn't believe it. In my peek-a-boo, eyes-closed reality, I had gained around five pounds. In this new, eye-opened reality, I had gained over twenty.
My mentor often says, "Too see is to be free."
In this moment, I felt anything but free. I felt terrified. Disgusting. Unlovable.
I didn't rush out and buy a scale. Nor do I now believe in weighing myself once a week or even once a month. But I do believe in being honest with myself and my body. It and I are one, after all, and I can tell when it is unhappy.
I recently took a nutrition course that changed my life and my relationship with food. This class taught me how eating whole foods acts like medicine. Now, I focus not on how much my body weighs but on how it feels after I eat certain foods. The partnership between my body and me will last a lifetime and I'm entering it eyes-wide-open.
Another area where I've often frozen in the eyes-covered phase of peek-a-boo is my finances. I've spent years diving in and clawing my way out of credit card debt, as most Americans have. This vicious cycle exhausts me. A few years ago, I wracked up trouble not by purchasing anything huge but by making a string of seemingly insignificant purchases of $20-$30. 'Tis amazing how quickly a few $20 purchases can add up to a thousand bucks. Part of the reason those small purchases piled up for me so quickly is that I rarely looked at my statement, simply paying a couple hundred dollars on the card each month but never really knowing exactly how much the balance was.
It was as if I believed that if I closed my eyes to it, it didn't exist. Or that some Magic Money Fairy was going to wave his magic debt-forgiving wand if I turned the other way. Although I still struggle in this money cycle, tracking my purchases and looking at the sometimes painful reality of the number on the statements has proven the only way to clear my debt. To see is to be free. To see the reality of the debt. To absorb it. To be frustrated about it. This reality, eyes-open check is the only way to understand the patterns that got me there in the first place and begin to live in a way that breaks those bonds. To free myself of those debts.
In the days of Sex in the City, I read a lot of how-to dating books, many of which taught school-marmy type rules about what a woman should or should not do in order to snag a man. One of the most popular, and the one that pissed me off the most, was He's Just Not That Into You, by Greg Behrendt. In this book, as many of you know, Mr. Behrendt, aka Mr. Painful Soothsayer, claims that if a man is not calling, setting up dates, committing, etc., then he's just not that into you. This truth hurt. And so, as I did in many other parts of my life, I decided to blind myself to it. In fact, one might say I was hear-no-evil, see-no-evil, and speak-no-evil all in one when it came to my dating life. An ostrich with her head in the sand, if you will. As if, if I just ignored the signs and pretended that all was hunky-dory with these non-committal men, then they would suddenly come around and be Mr. Perfect.
Recently, I've realized that this truth applies to my current love-life situation. Oh, man. Has my head been in the sand on this one for a long time. Years, people. Years. My affections aren't totally unwarranted, but my belief that this man and I would some day be together--that he is somehow my destiny--has been perhaps the biggest peek-a-boo game of my life. Not the peek-a-boo where you take your hands away from your eyes and see what's before you. The freeze-framed, eyes covered and squeezed shut one. The one that, in one's imagination, makes the unwanted situation disappear, but in reality actually allows it to fester.
Just two days ago, I had an epiphany. It went something like this: Ooooh. I get it. If he's not following through as if he wants more with me, he must not want more with me. Duh.
And almost just like that, the curtain came down. I see the truth. And although it stings (let's be honest, a lot), I do feel a little freer. A little more excited about the possibility of beginning a relationship with my eyes wide open rather than covered and shut.
And I'm no longer mad at Greg Behrendt. I realize that he just wanted to set me and all the other peek-a-boo-playing women free.
There are compartments of my life with which I often play an adult game of peek-a-boo. In these games, rather than covering my eyes and then uncovering them, I remain frozen in some sort of stop-motion. My hands covering my eyes. My eyes, even though shielded by my hands, squeezed tightly shut to totally block out these sometimes painful realities.
One compartment I shielded myself from for years was my weight. Up until about three years ago, I was a five-times-a-day weigher. I weighed myself first thing in the morning, naked. Then again after I put my clothes on to see how many pounds clothing added. Then after I ate breakfast to see how much I gained by eating a meal. Then again when I got home from work. And again before bed... And after I went to the bathroom (yes, number two.). My obsession with my weight a proverbial albatross hung around my neck. It determined the day's fate. Whether it would be happy or it would be cursed.
After years of living this way, I decided enough was enough and I threw away my scale, a both liberating and terrifying move. I tried to trust my body and be kind to it, all the while fearing food, and, more than that, fearing that the tightening of my waistband was indeed because of a rising of the number on the scale that I no longer owned.
I fooled myself into thinking that this liberation from the daily check-in was a liberation from an obsession with weight. But this wasn't true. I still worried. A lot. Any time I went to the doctor's office, the only place I had to step on a scale, I turned around. Although my clothes kept getting tighter, as long I stayed in blissful ignorance about the actual number, I believed that it was within a moderate range of what it used to be. Until last February. I had my annual physical and the physician's assistant, who has the tact of a wart hog, walked in and said, "Well, your weight's up to #@$" (insert whatever number you consider astronomical.). I couldn't believe it. In my peek-a-boo, eyes-closed reality, I had gained around five pounds. In this new, eye-opened reality, I had gained over twenty.
My mentor often says, "Too see is to be free."
In this moment, I felt anything but free. I felt terrified. Disgusting. Unlovable.
I didn't rush out and buy a scale. Nor do I now believe in weighing myself once a week or even once a month. But I do believe in being honest with myself and my body. It and I are one, after all, and I can tell when it is unhappy.
I recently took a nutrition course that changed my life and my relationship with food. This class taught me how eating whole foods acts like medicine. Now, I focus not on how much my body weighs but on how it feels after I eat certain foods. The partnership between my body and me will last a lifetime and I'm entering it eyes-wide-open.
Another area where I've often frozen in the eyes-covered phase of peek-a-boo is my finances. I've spent years diving in and clawing my way out of credit card debt, as most Americans have. This vicious cycle exhausts me. A few years ago, I wracked up trouble not by purchasing anything huge but by making a string of seemingly insignificant purchases of $20-$30. 'Tis amazing how quickly a few $20 purchases can add up to a thousand bucks. Part of the reason those small purchases piled up for me so quickly is that I rarely looked at my statement, simply paying a couple hundred dollars on the card each month but never really knowing exactly how much the balance was.
It was as if I believed that if I closed my eyes to it, it didn't exist. Or that some Magic Money Fairy was going to wave his magic debt-forgiving wand if I turned the other way. Although I still struggle in this money cycle, tracking my purchases and looking at the sometimes painful reality of the number on the statements has proven the only way to clear my debt. To see is to be free. To see the reality of the debt. To absorb it. To be frustrated about it. This reality, eyes-open check is the only way to understand the patterns that got me there in the first place and begin to live in a way that breaks those bonds. To free myself of those debts.
In the days of Sex in the City, I read a lot of how-to dating books, many of which taught school-marmy type rules about what a woman should or should not do in order to snag a man. One of the most popular, and the one that pissed me off the most, was He's Just Not That Into You, by Greg Behrendt. In this book, as many of you know, Mr. Behrendt, aka Mr. Painful Soothsayer, claims that if a man is not calling, setting up dates, committing, etc., then he's just not that into you. This truth hurt. And so, as I did in many other parts of my life, I decided to blind myself to it. In fact, one might say I was hear-no-evil, see-no-evil, and speak-no-evil all in one when it came to my dating life. An ostrich with her head in the sand, if you will. As if, if I just ignored the signs and pretended that all was hunky-dory with these non-committal men, then they would suddenly come around and be Mr. Perfect.
Recently, I've realized that this truth applies to my current love-life situation. Oh, man. Has my head been in the sand on this one for a long time. Years, people. Years. My affections aren't totally unwarranted, but my belief that this man and I would some day be together--that he is somehow my destiny--has been perhaps the biggest peek-a-boo game of my life. Not the peek-a-boo where you take your hands away from your eyes and see what's before you. The freeze-framed, eyes covered and squeezed shut one. The one that, in one's imagination, makes the unwanted situation disappear, but in reality actually allows it to fester.
Just two days ago, I had an epiphany. It went something like this: Ooooh. I get it. If he's not following through as if he wants more with me, he must not want more with me. Duh.
And almost just like that, the curtain came down. I see the truth. And although it stings (let's be honest, a lot), I do feel a little freer. A little more excited about the possibility of beginning a relationship with my eyes wide open rather than covered and shut.
And I'm no longer mad at Greg Behrendt. I realize that he just wanted to set me and all the other peek-a-boo-playing women free.
Sunday, November 18, 2012
Little Ms. Perfect-No-More
This morning I took a kickboxing class, a class my friend fondly calls ninja training. I love this class. For fifty minutes, we punch and kick the air as if it were an opponent. All the while, I picture whichever person or issue giving me the most grief at the moment. Mentally working towards a TKO.
There are people in the class who can literally kick higher than their shoulders. And some of the kicks are called flying kicks, where one is supposed to sort of high jump forward, kicking their imaginary, floating opponent. All Crouching-Tiger-Hidden-Dragon-style.
I, being rooted to the earth by Muscular Dystrophy, kick only a few inches off the floor. And jump-kicking I can only do when dreaming--maybe that's why I have so many dreams where I'm flying. God's little way of letting me experience my feet leaving the earth. If I'm being honest, I envy them a little. They look like they're having such fun defying gravity for those few stolen seconds. Of course, everything we cannot do always looks more tempting simply because we are denied it, the proverbial puppy in the window from our childhoods. Can't I have it, please, mom?
This morning, a thought struck me as I lost my balance during a lunging move. Teetering on the edge of my right Nike and feeling a little bit pissed off that I couldn't do the full move everyone else was doing, I realized that I have changed. I am no longer perfect. I know, I know, it came as quite a shock to me, too.
The more surprising part was that instead of thinking shit in this eye-opening moment, I thought free. In this moment, I actually congratulated myself. I realized that, even though I can't do all of the ninja moves, I have a ninja heart. To be out there. Kicking and punching and elbowing despite being disabled. And it wasn't one of those I-deserve-an-award-because-I-am-so-brave-to-be-defying-this congratulations. It was an I'm-not-perfect-and-I'm-proud-of-that one.
My need to be perfect started young. Having a disability that, starting in my three-year-old mind, had to be defied caused me to want to perfect whatever I could control. Can't you picture it? A little three-year-old girl. Hands on hips. Feet stomped firmly to the earth. Face set. Ready to push the boundaries. Ready to say a big FUCK YOU to MD. I guess that's what my life has been. A giant middle finger pointed at this imaginary, or not so imaginary, Goliath called Muscular Dystrophy.
The need for perfection plagued me in so many ways. I began people-pleasing in kindergarten when I told Mrs. Oretegon that I would show the new girl around, not necessarily because I wanted to be nice but more so because I wanted the teacher to think I was nice. Because I could not gain popularity through sports and was sort of an ugly-duckling, I gained friends by being the nicest girl at school. Not to say that it wasn't at all genuine. But there was so much sass in me that gurgled under the surface. A bubbling mass of quick-wit and snarky sarcasm I didn't dare set free.
In addition to the need to please people, I also work(ed) so hard to perfect my body. Over-exercising. Under-eating. Of course, all of this restriction can only lead to rebellion. Look at Czar Nicholas II and the Russians. That did not end well.
I was always the "good girl," never rocking the boat. I never swore. I never played Spin the Bottle. I never lied to my parents about where I was going or with whom. I didn't even have my first drink until I was 23.
What I've just been realizing lately is that not only has this need to be perfect affected my life in the obvious ways. Those ways that I can analyze for myself. It has also subconsciously affected my life-choices. Freud would be be beaming at my self-awareness. Although I am so very proud of the work that I do, it was my fear of failure that stopped me from pursuing a career in Psychology or medicine.
I am also sure that my need for perfection has prevented me from forming a bonded romantic relationship. In my 20s and early 30s, I always wanted to project only the best sides of my self. The ones that would surely attract. And I feared that when a man saw the parts of me I deemed ugly, he would run away. Or even if he didn't, how could I survive in a relationship that wasn't perfect?
This need for perfection is, of course, a human condition. We all suffer from it in varying degrees. We project ourselves as something we are not so that we can hold the jest up. This damages. Damages our self-worth. Damages our relationships. Damages our hearts.
2012 has been a birth year for me. The authentic me. The one who isn't perfect but is beautiful anyway. And that imperfect me is still saying F-You to MD; it's the fact that she's doing it out loud for all to hear is where the beauty lies.
I dare you to let your authentic show. Flash it just a little bit. It won't hurt you, I promise. In fact, it will set you free.
There are people in the class who can literally kick higher than their shoulders. And some of the kicks are called flying kicks, where one is supposed to sort of high jump forward, kicking their imaginary, floating opponent. All Crouching-Tiger-Hidden-Dragon-style.
I, being rooted to the earth by Muscular Dystrophy, kick only a few inches off the floor. And jump-kicking I can only do when dreaming--maybe that's why I have so many dreams where I'm flying. God's little way of letting me experience my feet leaving the earth. If I'm being honest, I envy them a little. They look like they're having such fun defying gravity for those few stolen seconds. Of course, everything we cannot do always looks more tempting simply because we are denied it, the proverbial puppy in the window from our childhoods. Can't I have it, please, mom?
This morning, a thought struck me as I lost my balance during a lunging move. Teetering on the edge of my right Nike and feeling a little bit pissed off that I couldn't do the full move everyone else was doing, I realized that I have changed. I am no longer perfect. I know, I know, it came as quite a shock to me, too.
The more surprising part was that instead of thinking shit in this eye-opening moment, I thought free. In this moment, I actually congratulated myself. I realized that, even though I can't do all of the ninja moves, I have a ninja heart. To be out there. Kicking and punching and elbowing despite being disabled. And it wasn't one of those I-deserve-an-award-because-I-am-so-brave-to-be-defying-this congratulations. It was an I'm-not-perfect-and-I'm-proud-of-that one.
My need to be perfect started young. Having a disability that, starting in my three-year-old mind, had to be defied caused me to want to perfect whatever I could control. Can't you picture it? A little three-year-old girl. Hands on hips. Feet stomped firmly to the earth. Face set. Ready to push the boundaries. Ready to say a big FUCK YOU to MD. I guess that's what my life has been. A giant middle finger pointed at this imaginary, or not so imaginary, Goliath called Muscular Dystrophy.
The need for perfection plagued me in so many ways. I began people-pleasing in kindergarten when I told Mrs. Oretegon that I would show the new girl around, not necessarily because I wanted to be nice but more so because I wanted the teacher to think I was nice. Because I could not gain popularity through sports and was sort of an ugly-duckling, I gained friends by being the nicest girl at school. Not to say that it wasn't at all genuine. But there was so much sass in me that gurgled under the surface. A bubbling mass of quick-wit and snarky sarcasm I didn't dare set free.
In addition to the need to please people, I also work(ed) so hard to perfect my body. Over-exercising. Under-eating. Of course, all of this restriction can only lead to rebellion. Look at Czar Nicholas II and the Russians. That did not end well.
I was always the "good girl," never rocking the boat. I never swore. I never played Spin the Bottle. I never lied to my parents about where I was going or with whom. I didn't even have my first drink until I was 23.
What I've just been realizing lately is that not only has this need to be perfect affected my life in the obvious ways. Those ways that I can analyze for myself. It has also subconsciously affected my life-choices. Freud would be be beaming at my self-awareness. Although I am so very proud of the work that I do, it was my fear of failure that stopped me from pursuing a career in Psychology or medicine.
I am also sure that my need for perfection has prevented me from forming a bonded romantic relationship. In my 20s and early 30s, I always wanted to project only the best sides of my self. The ones that would surely attract. And I feared that when a man saw the parts of me I deemed ugly, he would run away. Or even if he didn't, how could I survive in a relationship that wasn't perfect?
This need for perfection is, of course, a human condition. We all suffer from it in varying degrees. We project ourselves as something we are not so that we can hold the jest up. This damages. Damages our self-worth. Damages our relationships. Damages our hearts.
2012 has been a birth year for me. The authentic me. The one who isn't perfect but is beautiful anyway. And that imperfect me is still saying F-You to MD; it's the fact that she's doing it out loud for all to hear is where the beauty lies.
I dare you to let your authentic show. Flash it just a little bit. It won't hurt you, I promise. In fact, it will set you free.
Tuesday, November 13, 2012
Shadow Puppets
My day job is English teacher. I teach students to love literature.
Sigh.
If only that were true. What I really do is try to get them to look at literature differently--to look at it through an analytical lens so that then they can look at the world that way. Can see the symbolism in the mundane. Can read a little deeper into a sunset or a tree or a raven.
Sigh.
If only that were true. What I really do is try to get them to look at literature differently--to look at it through an analytical lens so that then they can look at the world that way. Can see the symbolism in the mundane. Can read a little deeper into a sunset or a tree or a raven.
This December, I will be teaching Joseph Conrad’s novella, The Heart of Darkness, for the first time. I read the book when I was in high school and to this day I have only frayed-edged memories of the book. But I have always remembered one line: “Mistah Kurtz--he dead.”
When I recently reread the novella to prepare to teach it, I got goosebumps at that part. Those four words the symbol of so much loss and yet so much freedom.
For those of you who have never read it (and for the rest of you for whom it's been decades), let me give you a brief refresher course: the narrator of the novel, Marlow, spends days sailing up river through the untamed Congo in order to meet this enigmatic man, Mr. Kurtz. To Marlow, Kurtz is a fantasy. A destination. An answer. Both esteemed and feared. For Marlow, Kurtz is larger than life.
The way Marlow describes him, he reminds me of a shadow puppet. You know, the ones your friends used to make when you were at a slumber party. Where someone held a flashlight up and your friends' tiny hands became giant butterflies or barking dogs or fire-breathing dragons. This is Kurtz. The Shadow Man.
Enduring danger, the uncomfortable, and the foreign, Marlow puts his life on hold to meet the dying Kurtz and return him to his home. His whole life dedicated to the task. So dedicated that his single-mindedness in reaching Kurtz becomes nearly hallucinatory.
When Marlow finally meets Kurtz, he finds him to be a somewhat normal man. A man with command and stature, but ordinary in his humanity, in his weakness. He dies, after all.
I, and I know I'm not alone, have so many Kurtzes in my life. So many end goals. So many Shadow Men.
These are the drives that move us forward. The ones we focus on so intensely that we almost become delusional in our quest to achieve them. In our minds, they are the shadow shapes on the wall. Giant. Indistinguishable. Elusive.
For Marlow, Kurtz acted like a magnet, drawing him ever-forward.
The Kurtz in my life with the strongest draw is a man I've moved towards for the past few years of my life. Like Marlow, in my mind, he lies at the end of the river. Powerful. Mysterious. Seemingly the only answer to this long journey. I have spent years working to understand our relationship--the ways in which it works and the ways in which it's broken. I have sailed the river of hope towards him, enduring the savagery of unfulfilled emotions. Dramatic, I know.
Recently, I have realized that this man, my Kurtz, is only a man. It is I who shines the flashlight on him and makes him bigger than he really is. I do this because I like the idea of it. The intangibility of it. How no matter how hard I try to grab at those shadows and capture them, I can't. It is in this mystery that he has power.
There are are Kurtzes in all of our lives. Those fears or hopes or drives or people that we have made larger than their actual size. The ones we blindly plunge towards regardless of our lack of real understanding about them, finding that, when we reach them, they aren't as life-answering or life-changing as we thought they would be.
I'm certainly not arguing that we should live without goals. But goals are different from these forces.
Perhaps that's why that line--"Mistah Kurtz--he dead"--resonates so powerfully for me. In Kurtz's death, Marlow had the opportunity (although most literary scholars would argue that he never seizes it) to find freedom and see Kurtz for who he really was. Just a man. Not a shadow.
In the death of these mysteries, there is freedom to see life as it really is. The life that is now. In this moment. Not the one that lies at the end of the river. We will get there eventually anyway; we might as well enjoy the tangible experiences and love and people who are here, now.
The way Marlow describes him, he reminds me of a shadow puppet. You know, the ones your friends used to make when you were at a slumber party. Where someone held a flashlight up and your friends' tiny hands became giant butterflies or barking dogs or fire-breathing dragons. This is Kurtz. The Shadow Man.
Enduring danger, the uncomfortable, and the foreign, Marlow puts his life on hold to meet the dying Kurtz and return him to his home. His whole life dedicated to the task. So dedicated that his single-mindedness in reaching Kurtz becomes nearly hallucinatory.
When Marlow finally meets Kurtz, he finds him to be a somewhat normal man. A man with command and stature, but ordinary in his humanity, in his weakness. He dies, after all.
I, and I know I'm not alone, have so many Kurtzes in my life. So many end goals. So many Shadow Men.
These are the drives that move us forward. The ones we focus on so intensely that we almost become delusional in our quest to achieve them. In our minds, they are the shadow shapes on the wall. Giant. Indistinguishable. Elusive.
For Marlow, Kurtz acted like a magnet, drawing him ever-forward.
The Kurtz in my life with the strongest draw is a man I've moved towards for the past few years of my life. Like Marlow, in my mind, he lies at the end of the river. Powerful. Mysterious. Seemingly the only answer to this long journey. I have spent years working to understand our relationship--the ways in which it works and the ways in which it's broken. I have sailed the river of hope towards him, enduring the savagery of unfulfilled emotions. Dramatic, I know.
Recently, I have realized that this man, my Kurtz, is only a man. It is I who shines the flashlight on him and makes him bigger than he really is. I do this because I like the idea of it. The intangibility of it. How no matter how hard I try to grab at those shadows and capture them, I can't. It is in this mystery that he has power.
There are are Kurtzes in all of our lives. Those fears or hopes or drives or people that we have made larger than their actual size. The ones we blindly plunge towards regardless of our lack of real understanding about them, finding that, when we reach them, they aren't as life-answering or life-changing as we thought they would be.
I'm certainly not arguing that we should live without goals. But goals are different from these forces.
Perhaps that's why that line--"Mistah Kurtz--he dead"--resonates so powerfully for me. In Kurtz's death, Marlow had the opportunity (although most literary scholars would argue that he never seizes it) to find freedom and see Kurtz for who he really was. Just a man. Not a shadow.
In the death of these mysteries, there is freedom to see life as it really is. The life that is now. In this moment. Not the one that lies at the end of the river. We will get there eventually anyway; we might as well enjoy the tangible experiences and love and people who are here, now.
Sunday, November 4, 2012
C No More
At UC Irvine, my alma mater, everyone majoring in Psychology and Social Behavior knew Professor Jamner. His Seinfeld-like mannerisms and non-traditional lecturing style made his classes some of the most sought after. Like a good patient, I took two: The Human Pain Experience and Human Stress.
I accredit Doctor Jamner for the high expectations I set for my students. His expectations for our midterm and final seemed nearly impossible at first; the directions on the study guide read something like this: Below are seventy-five short answer questions, eight of which will be on your midterm. Prepare yourself.
During the days leading up to the test, my roommate and I, droopy-eyed and foggy-headed from lack of sleep, wrote out answers to all seventy-five questions, then spent hours quizzing each other, trying to memorize all that we could. Although I loved his teaching style, I abhorred his testing methods. But, as is usually the case when expectations are high (you will thank me some day, dear students), I remember the most from his classes. Especially the tidbit about how I'm "doomed" to always feel stressed because of my lack of being a true A. No, not bra size--A, as in Type-A personality disorder--ahem-- I mean Type-A personality...which I label a disorder because "those" people can be so un-fun.
College was, gulp, nineteen years ago. And I remember that Doctor Jamner taught me this: It is a fallacy that there are only two different major personality types, A and B. In reality, there are three: A, B, and C. You know, Type-As, like little border collies, organize and control the world and the people in it; Type-Bs, the fun-loving mutts of the world, roll their eyes at the As behind their backs and then get everyone drunk.
The little-known step-child of the group is Type-C. Type-Cs pour everyone shots, hoot and holler, and then quickly clean up all the little red cups so that the place looks a little more tidy. Type-Cs are Type-As disguised as Type-Bs. They are the people who want the world to think they live on Margaritaville time, while secretly they love to punch the clock a few minutes early. And this lack of being true to themselves causes unhealthy amounts of stress.
This is me.
Often, I am told I have "such a calm presence," seemingly unruffled by both little annoyances and major catastrophes. Cool as a cuke. My slow-paced walk might be somewhat to blame. Or my seeming level-headedness. True, I'm not a handle-flyer-off-er. I don't yell. I don't flip people off on the road (although I'm often muttering The Big One at them as I drive by) nor do I cut them off...unless by accident, of course. Wink wink. My house would not pass the white-glove test and my desk at work looks more post-Apocalyptic than an i-dotter and t-crosser's space.
But it's true.
Don't let my flip-flops fool you.
I am an A.
I like control.
And order.
And fairness.
And rule-abiding.
And color-coding with Post-It notes.
This life of ours is filled with too much stress as it is; there's no need to add any more to our adrenaline-filled, cortisol-pumping systems by not being true to ourselves.
I am shouting it from the cyber-mountain-top: I AM AN A!
And a damn fun one, at that.
Monday, October 29, 2012
A Body in Motion
Newton's First Law of Motion is, in laywoman's terms, a body at rest stays at rest and a body in motion stays, well, in motion.
When I was a kid, I nerded out to nature shows. My sister and I would lie on our bellies, heads perched in our hands, and watch Mutual Omaha's Wild Kingdom. I loved those animals. They were quirky and communal and beautiful.
The one animal I did not like was the sloth. To look at them scared me, actually. Still does, a bit. Their triangle-shaped, flat heads and beaky noses seemed unnatural to me. And forget about the claws. I could not even handle thinking about those strange hoof-like grippers that kept sloths in the canopies of the forests. So disgusting. Recently, I learned that sloths move so slowly that moss grows on their backs. Can you imagine? Wearing a blanket of moss. See, I told you they were disgusting.
Perhaps my distaste for the sloth explains my distaste for a sloth-like life. The life that is so easily fallen in to. The life that so many of us live.
Sometimes, I give myself sloth-days. The ones where the couch wins out over the gym and the TV wins out over the book (Let's face it, the TV usually wins out over everything, including conversation with loved ones. I digress.); days where I let some elves in some magic factory far away make my dinner, put it in the box for me, and tell me how to heat it up. In the microwave, of course. Dinner in three-and-a-half minutes. Ding.
The problem with these days is that they are contagious. Rarely does a day of sloth remain just a day; instead, the day slowly reaches with its claws, crawling from one day in the canopy of laziness (isn't that called a hammock?) to the next, creeping so slowly that they, or rather we, gather slime along the way.
Funny how the flesh, which takes months to mold into something resembling a sense of muscularity, spreads into Jell-O so quickly. In a matter of days, really. As if that's the state it really wants to be in. The state of cushion-hood. I suppose some of us could fool ourselves into thinking that, in our days of inertia, we are proving physics. After all, once at rest it is so easy to stay at rest.
People often ask me how I am so strong given the disability that I have. My answer always is: A body in motion stays in motion. I have always been active. As a teen, I walked the family dog. In my twenties, I joined the gym and joined the treadmill race, walking not running, of course (These were fanatical days. Ones to which I wish never to return.). In my thirties, I discovered Pilates. Nowadays, I do "Lite" versions of aerobics classes at a gym. Exercise has not only kept my body stronger than it should be but it's also kept the moss off my back.
And wasn't Newton talking about more than just physics? Can't we make this a fill-in-the-blank? A _______ at rest stays at rest; and A ______ in motion stays in motion. A mind. A passion. A love affair.
What would you fill in that blank? What in your life is at rest that really needs to be in motion? How about your back? Exempting the occasional back hair, is it filled with moss? Is it time to scrape it off and set those claws on the ground?
When I was a kid, I nerded out to nature shows. My sister and I would lie on our bellies, heads perched in our hands, and watch Mutual Omaha's Wild Kingdom. I loved those animals. They were quirky and communal and beautiful.
The one animal I did not like was the sloth. To look at them scared me, actually. Still does, a bit. Their triangle-shaped, flat heads and beaky noses seemed unnatural to me. And forget about the claws. I could not even handle thinking about those strange hoof-like grippers that kept sloths in the canopies of the forests. So disgusting. Recently, I learned that sloths move so slowly that moss grows on their backs. Can you imagine? Wearing a blanket of moss. See, I told you they were disgusting.
Perhaps my distaste for the sloth explains my distaste for a sloth-like life. The life that is so easily fallen in to. The life that so many of us live.
Sometimes, I give myself sloth-days. The ones where the couch wins out over the gym and the TV wins out over the book (Let's face it, the TV usually wins out over everything, including conversation with loved ones. I digress.); days where I let some elves in some magic factory far away make my dinner, put it in the box for me, and tell me how to heat it up. In the microwave, of course. Dinner in three-and-a-half minutes. Ding.
The problem with these days is that they are contagious. Rarely does a day of sloth remain just a day; instead, the day slowly reaches with its claws, crawling from one day in the canopy of laziness (isn't that called a hammock?) to the next, creeping so slowly that they, or rather we, gather slime along the way.
Funny how the flesh, which takes months to mold into something resembling a sense of muscularity, spreads into Jell-O so quickly. In a matter of days, really. As if that's the state it really wants to be in. The state of cushion-hood. I suppose some of us could fool ourselves into thinking that, in our days of inertia, we are proving physics. After all, once at rest it is so easy to stay at rest.
People often ask me how I am so strong given the disability that I have. My answer always is: A body in motion stays in motion. I have always been active. As a teen, I walked the family dog. In my twenties, I joined the gym and joined the treadmill race, walking not running, of course (These were fanatical days. Ones to which I wish never to return.). In my thirties, I discovered Pilates. Nowadays, I do "Lite" versions of aerobics classes at a gym. Exercise has not only kept my body stronger than it should be but it's also kept the moss off my back.
And wasn't Newton talking about more than just physics? Can't we make this a fill-in-the-blank? A _______ at rest stays at rest; and A ______ in motion stays in motion. A mind. A passion. A love affair.
What would you fill in that blank? What in your life is at rest that really needs to be in motion? How about your back? Exempting the occasional back hair, is it filled with moss? Is it time to scrape it off and set those claws on the ground?
Friday, October 19, 2012
These Slow and Steady Changes
Everyone knows that change can happen in the tiniest split-hair of a second. Life can fracture that fast.
My house overlooks a major thoroughfare; the constant rumble of traffic has melted into semi-white noise over the two years I've lived here. On fairly regular occasion, the red scream of a siren rips that white noise apart, reminding me that there are people hurting. Loved ones are in fear.
My classroom, too, sits on a road that houses a hospital on its opposite end. I often tell my students to send the person in the ambulance a positive thought or two. These are the reminders of how quickly all can change.
Life itself, too, sometimes becomes white noise. We rumble along on its (fingers crossed) lengthy thoroughfare, zombie-ing ourselves from one commitment to another, waiting for some sort of siren-- hopefully (fingers crossed) positive--to rip the monotony apart. Perhaps this is American discontent. The rat-on-the-wheel-running-toward-something-bigger-and-(fingers crossed)-better-phenomenon. Only, we find that the wheel doesn't stop until we decide to stop chasing the bigger and better and be (fingers crossed) content with what we have.
These siren-ous moments are not the ones I set out to write about today. In actuality, today I was struck about the subtle changes in life. The ones that creep rather than pierce.
We've all been there. The pounds that slowly layer themselves on so painstakingly slowly that we just can't understand how we've gained twenty pounds; for men (and some women) the few hairs that fall out every day, seemingly no big deal until suddenly the hairline looks more like it's low tide than high; the resentment that drips poison into our thoughts about our partners and loved ones, a build up of arsenic that mummifies these relationships and numbs us to the stalemate at which we've arrived.
For me, these slow and steady changes center most around what I used to be able to do and no longer can. When I was little, I used to be able to climb a jungle gym. Even make it to the top. Today, I would not even make it up the bottom rung. I used to be able to climb every curb, even the Mt. Everests of curbs. Today, for most curbs, I need to lean on the hood of a car (sorry for the fingerprints) or grab the nearest pole to help hoist me up. I used to be able to climb steep hills, slowly but surely reaching the top. Today, I would need something to lean on, an arm or a railing or some day (maybe) a cane. I used to be able to sit on the floor and get up with relative ease. Today, I need a couch or a chair to put the top half of my body in while I inch my legs into standing position, looking like a knock-kneed, newborn giraffe.
I don't remember the gap years. How I got from there to here.
I think these slow and steady changes are God's way of ripping off the band-aid slowly. So it doesn't hurt as much. So that by the time we arrive on this side of the gap, we don't feel like something has been stolen from us. We, in fact, don't really miss what we once had.
In light of all of the abilities I've lost, it's a damn good thing there are so many things I do so much better than ever I did before--like accepting and forgiving and hoping and understanding and loving.
(Who cares about climbing an ol' jungle gym anyway?)
My house overlooks a major thoroughfare; the constant rumble of traffic has melted into semi-white noise over the two years I've lived here. On fairly regular occasion, the red scream of a siren rips that white noise apart, reminding me that there are people hurting. Loved ones are in fear.
My classroom, too, sits on a road that houses a hospital on its opposite end. I often tell my students to send the person in the ambulance a positive thought or two. These are the reminders of how quickly all can change.
Life itself, too, sometimes becomes white noise. We rumble along on its (fingers crossed) lengthy thoroughfare, zombie-ing ourselves from one commitment to another, waiting for some sort of siren-- hopefully (fingers crossed) positive--to rip the monotony apart. Perhaps this is American discontent. The rat-on-the-wheel-running-toward-something-bigger-and-(fingers crossed)-better-phenomenon. Only, we find that the wheel doesn't stop until we decide to stop chasing the bigger and better and be (fingers crossed) content with what we have.
These siren-ous moments are not the ones I set out to write about today. In actuality, today I was struck about the subtle changes in life. The ones that creep rather than pierce.
We've all been there. The pounds that slowly layer themselves on so painstakingly slowly that we just can't understand how we've gained twenty pounds; for men (and some women) the few hairs that fall out every day, seemingly no big deal until suddenly the hairline looks more like it's low tide than high; the resentment that drips poison into our thoughts about our partners and loved ones, a build up of arsenic that mummifies these relationships and numbs us to the stalemate at which we've arrived.
For me, these slow and steady changes center most around what I used to be able to do and no longer can. When I was little, I used to be able to climb a jungle gym. Even make it to the top. Today, I would not even make it up the bottom rung. I used to be able to climb every curb, even the Mt. Everests of curbs. Today, for most curbs, I need to lean on the hood of a car (sorry for the fingerprints) or grab the nearest pole to help hoist me up. I used to be able to climb steep hills, slowly but surely reaching the top. Today, I would need something to lean on, an arm or a railing or some day (maybe) a cane. I used to be able to sit on the floor and get up with relative ease. Today, I need a couch or a chair to put the top half of my body in while I inch my legs into standing position, looking like a knock-kneed, newborn giraffe.
I don't remember the gap years. How I got from there to here.
I think these slow and steady changes are God's way of ripping off the band-aid slowly. So it doesn't hurt as much. So that by the time we arrive on this side of the gap, we don't feel like something has been stolen from us. We, in fact, don't really miss what we once had.
In light of all of the abilities I've lost, it's a damn good thing there are so many things I do so much better than ever I did before--like accepting and forgiving and hoping and understanding and loving.
(Who cares about climbing an ol' jungle gym anyway?)
Monday, October 15, 2012
Drama
I'm not really one to pull out my soap box and preach from it--my students may beg to differ--but sometimes I find myself in the mood to battle.
I have a bone to pick with Hollywood. Well, a couple actually. The first contention, of course, is their representation of "normal." Normal to Hollywood means to be Stunning. How do we average humans (hey, even those who are above average) watch these giant visions of perfection on the screen and not judge ourselves against them?
In the movies, the hero and heroine are, inevitably, beautiful. I spent minutes wracking my brain to think of an ugly protagonist and all I came up with was Gerard Depardieu...and that was in the 90s! I couldn't even come up with a not-so-attractive woman who played a protagonist role (if you can think of one, please post a comment). No, according to Hollywood, ugly equals evil and beauty equals good.
As I am working towards vulnerability (watch this TED talk--it's part of what inspired me to start this blog), I am coming to understand that these "perfect" beings are not my ultimate goal. After all, in real life, many of these people are suffering.
This unfair, unreachable expectation of beauty is not actually my biggest gripe. My biggest beef, if you will. What offends me most about Hollywood is that people keep winning awards for playing physically and mentally disabled people, but no disabled person actually plays himself. They, the actors, are getting all of the credit without any of the struggle.
Oh, sure, they will tell you that they spent five days walking through life blindfolded so that they could see what it was like to be blind, or that they rolled around in a wheelchair for a few weeks so that they could feel what it really feels like to be paralyzed. I have news for you, Hollywood, you got to take that blindfold off and stand up from that chair. Not so for those of us who really do live with a struggle every, single day.
And you are winning awards for playing us.
Awards!
Sometimes, the cynic in me pays attention to ethnicity in commercials. I'm always impressed when a company is "brave" enough to feature an interracial couple. Those edge-walking daredevils like JC Penny. I think it's their way of looking cool so that we who have written them off as old-people clothiers, might pause and say to ourselves, Hey, JC Penny, land of the grandmothers, has become progressive.
Although many companies have gone interracial, few have gone disabled. It's as if having their clothes featured on a person cruising in a wheelchair or walking with crutches or limping along somehow makes the clothes contagious. As if the people who bought those clothes would somehow catch the ailment. Some modern-day small pox virus.
Some of you are thinking--but what about Glee, Heather? They have a kid in a wheelchair in their show. In real life, Kevin McHale walks. And can we talk about how he's type-casted in the show? A geek. A semi-misfit who sometimes gets the babe.
I act every single day of my life. My captive audience is a group of forty-two seniors. They are mine for 90 minutes a day. On most days, I put on a show. I gear up for the over-enthusiasm needed these days and dog-and-pony my way through my time with them, just to eke out a morsel of their motivation. Sometimes I am good. Damn good.
Because of this, I've thought about taking acting classes. I think I have some raw talent. But what stops me are these: the stairs to get on stage--how would I climb those without being overly conspicuous? It wouldn't look like the actors do when they fly up them, two at a time; the chairs--what if the ones on stage were too low and I'd have to hoist myself out of them? The camera and the audience won't like that awkward pause of a moment; the movements--what if my character had to jump or run or throw herself at someone? My body won't do that.
I do not blame myself for these insecurities. I blame Hollywood. After all, I've never seen anyone like me on the screen. Never. How am I supposed to believe that it could be me and that I, too, am normal? In all my disabled perfection.
Huh. There is a spell to be broken here. Some new normal to be set. I think it's time to enroll myself in Acting 101. Anyone care to join?
I have a bone to pick with Hollywood. Well, a couple actually. The first contention, of course, is their representation of "normal." Normal to Hollywood means to be Stunning. How do we average humans (hey, even those who are above average) watch these giant visions of perfection on the screen and not judge ourselves against them?
In the movies, the hero and heroine are, inevitably, beautiful. I spent minutes wracking my brain to think of an ugly protagonist and all I came up with was Gerard Depardieu...and that was in the 90s! I couldn't even come up with a not-so-attractive woman who played a protagonist role (if you can think of one, please post a comment). No, according to Hollywood, ugly equals evil and beauty equals good.
As I am working towards vulnerability (watch this TED talk--it's part of what inspired me to start this blog), I am coming to understand that these "perfect" beings are not my ultimate goal. After all, in real life, many of these people are suffering.
This unfair, unreachable expectation of beauty is not actually my biggest gripe. My biggest beef, if you will. What offends me most about Hollywood is that people keep winning awards for playing physically and mentally disabled people, but no disabled person actually plays himself. They, the actors, are getting all of the credit without any of the struggle.
Oh, sure, they will tell you that they spent five days walking through life blindfolded so that they could see what it was like to be blind, or that they rolled around in a wheelchair for a few weeks so that they could feel what it really feels like to be paralyzed. I have news for you, Hollywood, you got to take that blindfold off and stand up from that chair. Not so for those of us who really do live with a struggle every, single day.
And you are winning awards for playing us.
Awards!
Sometimes, the cynic in me pays attention to ethnicity in commercials. I'm always impressed when a company is "brave" enough to feature an interracial couple. Those edge-walking daredevils like JC Penny. I think it's their way of looking cool so that we who have written them off as old-people clothiers, might pause and say to ourselves, Hey, JC Penny, land of the grandmothers, has become progressive.
Although many companies have gone interracial, few have gone disabled. It's as if having their clothes featured on a person cruising in a wheelchair or walking with crutches or limping along somehow makes the clothes contagious. As if the people who bought those clothes would somehow catch the ailment. Some modern-day small pox virus.
Some of you are thinking--but what about Glee, Heather? They have a kid in a wheelchair in their show. In real life, Kevin McHale walks. And can we talk about how he's type-casted in the show? A geek. A semi-misfit who sometimes gets the babe.
I act every single day of my life. My captive audience is a group of forty-two seniors. They are mine for 90 minutes a day. On most days, I put on a show. I gear up for the over-enthusiasm needed these days and dog-and-pony my way through my time with them, just to eke out a morsel of their motivation. Sometimes I am good. Damn good.
Because of this, I've thought about taking acting classes. I think I have some raw talent. But what stops me are these: the stairs to get on stage--how would I climb those without being overly conspicuous? It wouldn't look like the actors do when they fly up them, two at a time; the chairs--what if the ones on stage were too low and I'd have to hoist myself out of them? The camera and the audience won't like that awkward pause of a moment; the movements--what if my character had to jump or run or throw herself at someone? My body won't do that.
I do not blame myself for these insecurities. I blame Hollywood. After all, I've never seen anyone like me on the screen. Never. How am I supposed to believe that it could be me and that I, too, am normal? In all my disabled perfection.
Huh. There is a spell to be broken here. Some new normal to be set. I think it's time to enroll myself in Acting 101. Anyone care to join?
Sunday, October 7, 2012
Separate but Equal
For years, I have been at war with my body. I have starved it, gorged it, made it work harder than it was meant to, allowed it weeks of sloth--all the while trying to beat it into submission, as if it were an It, totally separate from the Me.
When I was around seven, my parents went out for a date one weekend, leaving my sister and me with a babysitter. In addition to baking cookies and watching a scary movie, weighing my sister and I was part of her idea of fun. I remember what I weighed: 55 pounds.
55!
My babysitter said to me: "For your age, that's kind of heavy."
And so began my distrust of my body. Of course, I had other reasons to distrust it--its inability to run or jump or climb the jungle gym, to name a few--but nothing bothered me at that time more than the weight. The weight equaled ugliness. And ugliness equaled unpopularity. And unpopularity equaled a hopeless, desperate life...in my seven-year-old mind, at least.
Now, as an adult who spends the majority of her waking hours with teenagers and has had plenty of years to reflect back, I know that popularity does not equal happiness. And unpopularity does not mean a lack of friends. And that none of this has to do with weight.
But, back then, unpopularity was catastrophic. As was being heavier.
Of course, little did I know at seven that I would be an early bloomer, and Puberty would greet me two years later at the age of nine, puffing me up with a pubescent layering of fat and size C boobs. Yes, at nine.
I really was a misfit. And, although some of you might be thinking that I must have been popular with the boys, I ask you: what does a nine-year-old boy know about boobs?
I remember the first time I ate only an apple for lunch during 7th grade. What power I felt over the self-control and how I loved the attention when people asked me if that was all I were eating. What a strong person I was. How they must have envied me...or so I thought.
Thus began the swinging pendulum of my life, knocking over the tiny posts of weight loss and weight gain. All the while, my mind mistrusting my body but my never really understanding this or even stopping to think about it.
I know I'm not alone here. In this place of distrust. In this place of Me vs. It.
I know that, particularly as women, we judge ourselves on our bodies. Our bodies determine how valuable, powerful, desirable we are. And we compare ourselves to other women...leading to us probably checking out more women than we do men--in order to size each other up, as if happiness were in direct correlation to size. And we think that the thinnest girls' lives must be the most perfect.
And, although I have MD, I have spent years exercising beyond what is necessary, somehow hoping that if I punished my body enough, it would change. It would heal. That if only I chiseled at it hard enough, it would be like everyone else's--the normal people.
A few months ago, the same mentor who asked me if I really wanted love also said to me: "Your body is your teacher."
As she said those words, I began to cry. I had been gypped. I wanted a different teacher. A yoga master, perhaps. A marathon runner. A tall, waify giraffe-like body. Not this one. Not this "damaged," tending-to-be-too-curvy teacher with whom I am constantly at battle. I couldn't possible learn something from a teacher I didn't even like. A teacher I didn't, in fact, know very well.
It's been a slow getting-to-know you process. My body and I certainly haven't rushed into matrimony. I still resent her some, if I'm being honest. But I'm learning to trust her a little bit more. That she has an intuition that is beyond my over-active mind.
I had a raging headache today. My body's way of saying, Hey. Hey, you there. You whose mind thinks it's separate from me. We need rest today. I'm hurting.
I'm ashamed to say that I didn't honor her fully today. I pushed beyond what I probably should have. But perhaps the small victory here is that I heard her. And I knew that she was talking to me.
A few months ago, the same mentor who asked me if I really wanted love also said to me: "Your body is your teacher."
As she said those words, I began to cry. I had been gypped. I wanted a different teacher. A yoga master, perhaps. A marathon runner. A tall, waify giraffe-like body. Not this one. Not this "damaged," tending-to-be-too-curvy teacher with whom I am constantly at battle. I couldn't possible learn something from a teacher I didn't even like. A teacher I didn't, in fact, know very well.
It's been a slow getting-to-know you process. My body and I certainly haven't rushed into matrimony. I still resent her some, if I'm being honest. But I'm learning to trust her a little bit more. That she has an intuition that is beyond my over-active mind.
I had a raging headache today. My body's way of saying, Hey. Hey, you there. You whose mind thinks it's separate from me. We need rest today. I'm hurting.
I'm ashamed to say that I didn't honor her fully today. I pushed beyond what I probably should have. But perhaps the small victory here is that I heard her. And I knew that she was talking to me.
Wednesday, October 3, 2012
Fun with Letters
So, if we are being totally honest, and I am embracing this authenticity thing, there's something you should know... I have never been in love. I have never had a man say those three, magic-filled words. You know, I love you.
If the sewn-on scarlet A brought Hester Prynne shame in Nathaniel Hawthorne's day, the letter S is the modern-day version. After all, if we branded adulterers today, imagine how many people would walk around sporting As across their chests. Tailors and stencilers would be millionaires. And I'm not sure adultery is met with shame so much anymore; rather a simple shrug of the shoulders, a casual "I'm not surprised" have become the norm.
But when I tell someone that, at thirty-eight, I am single and have always been single, it's as if people look for the letter L tattooed on my forehead. Sure, they feign surprise. But I'm not fooled. On the inside, not too deeply hidden, as I often see it flit across their faces, they are wondering what is wrong with me. How could a seemingly "normal" woman have never been in love? What have I done to scare these men away?
And I know I'm not alone. I have a small cohort of single girlfriends, all in their mid-to-late thirties. Most of them, of course, have had relationships in the past but have found themselves single at this strange chapter, when being single comes with a brand of a tiny 'o' for other. We are the wheels. The third wheel, the fifth wheel; hell, I've even been a ninth wheel before. But we have learned to accept this. To welcome it, even, because, after all, it means we have friends.
We have attended countless bridal showers, bridesmaided our way into bridesmaid heaven, thrown baby showers, and oohed and aahed at countless babies. And it's not that we don't love these people. And send them happiness and blessings and love. It's just that sometimes, just sometimes, we wish it were us.
When I would talk about love with the connecteds, they would say: "It will happen when you least expect it" or "Love will come when you are ready." I used to shake my fist at the sky, silently screaming: But I am ready. Have always been ready.
Last January, I made an appointment with an amazing mentor of mine. During our talk, I complained to her about my lack of, and need for, love. She asked me pointedly: "Are you sure you want it?"
I didn't know how to answer that. Such a heavy question. So loaded with years of stories from my married friends about lack of spark and the witnessing of nit-picky fights. But somewhere, lying deep within the muck of uncertainty, shone a little kernel of hope. My heart a tiny Pandora's box, hope still nestled inside. And so I said yes. Yes, I was sure.
And, boy, did I find it. Here, my friends, is what I had missed all along. I had spent so many years seeking outside of myself for love, molding myself into what I thought men wanted me to be. I never realized that the answer to my quest for love was finding myself. True love for myself.
This past July, someone finally told me they loved me.
That someone was myself.
And it's amazing how the sting of that tricky letter S, even though I look forward to the day when I can unstitch it from my skin, has been dulled by those three, magic, lonely-killing words.
If the sewn-on scarlet A brought Hester Prynne shame in Nathaniel Hawthorne's day, the letter S is the modern-day version. After all, if we branded adulterers today, imagine how many people would walk around sporting As across their chests. Tailors and stencilers would be millionaires. And I'm not sure adultery is met with shame so much anymore; rather a simple shrug of the shoulders, a casual "I'm not surprised" have become the norm.
But when I tell someone that, at thirty-eight, I am single and have always been single, it's as if people look for the letter L tattooed on my forehead. Sure, they feign surprise. But I'm not fooled. On the inside, not too deeply hidden, as I often see it flit across their faces, they are wondering what is wrong with me. How could a seemingly "normal" woman have never been in love? What have I done to scare these men away?
And I know I'm not alone. I have a small cohort of single girlfriends, all in their mid-to-late thirties. Most of them, of course, have had relationships in the past but have found themselves single at this strange chapter, when being single comes with a brand of a tiny 'o' for other. We are the wheels. The third wheel, the fifth wheel; hell, I've even been a ninth wheel before. But we have learned to accept this. To welcome it, even, because, after all, it means we have friends.
We have attended countless bridal showers, bridesmaided our way into bridesmaid heaven, thrown baby showers, and oohed and aahed at countless babies. And it's not that we don't love these people. And send them happiness and blessings and love. It's just that sometimes, just sometimes, we wish it were us.
When I would talk about love with the connecteds, they would say: "It will happen when you least expect it" or "Love will come when you are ready." I used to shake my fist at the sky, silently screaming: But I am ready. Have always been ready.
Last January, I made an appointment with an amazing mentor of mine. During our talk, I complained to her about my lack of, and need for, love. She asked me pointedly: "Are you sure you want it?"
I didn't know how to answer that. Such a heavy question. So loaded with years of stories from my married friends about lack of spark and the witnessing of nit-picky fights. But somewhere, lying deep within the muck of uncertainty, shone a little kernel of hope. My heart a tiny Pandora's box, hope still nestled inside. And so I said yes. Yes, I was sure.
And, boy, did I find it. Here, my friends, is what I had missed all along. I had spent so many years seeking outside of myself for love, molding myself into what I thought men wanted me to be. I never realized that the answer to my quest for love was finding myself. True love for myself.
This past July, someone finally told me they loved me.
That someone was myself.
And it's amazing how the sting of that tricky letter S, even though I look forward to the day when I can unstitch it from my skin, has been dulled by those three, magic, lonely-killing words.
Monday, October 1, 2012
This I Believe
Recently, I came out of the closet that I had spent years trapped in, trying to hide who I really was--hiding even from myself. No, I am not a lesbian, although I think life might be a little bit easier if I were. The box I had closeted myself in was the one that housed my acknowledgement and public-displays of my disability.
As often as I could, I would avoid situations that might "out" me. Rather than climb stairs in front of people, I would walk the long way around; instead of choosing a low chair that I might struggle to rise from, I chose a stool whenever possible; although I live close to the beach, I never took anyone up on their invitation to sunbathe, the sand being one of my most powerful nemeses.
I switched jobs last year. I am a teacher and spent the first twelve years of my career teaching middle schoolers, primarily 7th graders. Perhaps I judged them unfairly, but I never thought they were quite capable of understanding being...One of the first times I did risk it and share, I was asked if I were contagious. That shut me up pretty quickly.
Last year, I moved up in the world and joined the ranks of the hip high school teachers. The school where I teach honors the quirky, the misfit, the individual.
They are my people.
I decided to "come out" on the first day of school last year. Modeling an activity after NPR's This I Believe, I wrote and shared the following with my new students:
I'm happy to report that I got a round of applause each time I shared. And even more powerful than the accolades from the students--despite how reassuring they were--is the freedom that being my authentic self ushered into my life. I am no longer imprisoned in my tiny little closet.
It turns out, Mark Twain was onto something when he said: "When in doubt, tell the truth." It's not, afterall, about not getting caught in a lie; it's about finding freedom in who you really are.
As often as I could, I would avoid situations that might "out" me. Rather than climb stairs in front of people, I would walk the long way around; instead of choosing a low chair that I might struggle to rise from, I chose a stool whenever possible; although I live close to the beach, I never took anyone up on their invitation to sunbathe, the sand being one of my most powerful nemeses.
I switched jobs last year. I am a teacher and spent the first twelve years of my career teaching middle schoolers, primarily 7th graders. Perhaps I judged them unfairly, but I never thought they were quite capable of understanding being...One of the first times I did risk it and share, I was asked if I were contagious. That shut me up pretty quickly.
Last year, I moved up in the world and joined the ranks of the hip high school teachers. The school where I teach honors the quirky, the misfit, the individual.
They are my people.
I decided to "come out" on the first day of school last year. Modeling an activity after NPR's This I Believe, I wrote and shared the following with my new students:
When we were children, my sister
and I visited a specialist doctor once a year.
He would have us walk down the hallway of the hospital as he stood
watching our gait, furiously scribbling notes, taking notice of any awkward
wobbles or outward bending of the ankles.
Inside the exam room, he would ask us to sit in a chair and try to stand
up without using our arms to help. We
would try. And fail. He would ask us questions about “adjusting”
and “school” and “happiness.”
All this time, my
parents hovered over us, my mom trying to act like she wasn’t concerned. She is a woman who is champion at putting on
a brave face. I knew, though. I felt her fear, that hope-thieving gypsy.
At
some point in the office visit, he would turn to my sister and me and say,
“Well done, girls. Now, why don’t you
two run down to the waiting room and play with some toys. Your mom and dad and I are just going to chat
for a few minutes and then they’ll be right out.”
Dutifully,
Cari and I would entertain ourselves with the dingy-furred, germ-filled stuffed
animals. We played in silence. Never talking about what had just happened or
the disability we had.
I didn’t really get it then. Didn’t really understand why we were there or
what it all meant. All I knew was that I
didn’t like the look in that man’s eyes.
The pity lying in there. That we
were somehow doomed to fail. Even at such a young age, it tightened my chest. Set aflame my desire to rebel against it. And
so, at the age of ten, I told my parents that the doctor treated us like some
sort of freaks—told them I would not go back to see him. They agreed, without
much argument. I had won.
That was the
beginning of my winning. You see, my
sister and I were born with Muscular Dystrophy, a disability where muscle tissue
deteriorates over time. The odds were
stacked against us, my sister and I.
Come to find out that in their private “chats,” the doctor had warned my mom and dad to be
prepared to have two children in wheelchairs by the age of eighteen. The torture my parents must have put
themselves through, worrying about the future of both of their daughters. The uncertainty of how long their children
would physically function despite the brilliance of their brains and spirits.
It’s lucky for
them—and more so for me—that I believe that odds are meant to be
defied—especially the ones that are filled with “can’t”s or “shouldn’t”s or
“never will”s. Instead of seeing these
as a reason to give up, I see these as an invitation to pick up the sword of
one’s spirit and go to battle. Whatever
the odds might be. However heavily
stacked against you. Even if the issue
is something small—passing a test, asking your crush to the movies even when
just being around that person sets your tongue to stuttering, standing up for yourself
when your feelings have been hurt—these little moments of victory will
strengthen your will and enable you to fight the bigger battles that are
guaranteed to come, those battles in which someone’s relationship or future or
life is on the line.
Isn’t this why,
after all, people love to root for the underdog? Why television stories where some miracle has
occurred become the ones we don’t forget?
Where some person or creature has defied all odds to succeed or
survive. Those are the moments that move
us. Those are the stories we
remember. Those are the stories that set
us apart and make us human.
Always remember,
that those odds stacked against us are just odds. They are not the decision. Why not see them as invitations to fight?
This, I believe.
I'm happy to report that I got a round of applause each time I shared. And even more powerful than the accolades from the students--despite how reassuring they were--is the freedom that being my authentic self ushered into my life. I am no longer imprisoned in my tiny little closet.
It turns out, Mark Twain was onto something when he said: "When in doubt, tell the truth." It's not, afterall, about not getting caught in a lie; it's about finding freedom in who you really are.
Friday, September 28, 2012
The Lemon Girdle
A few years ago, I began blogging. A quirky little blog about dating in which I rehashed the more-often-than-not horrific online dates I'd endured, berating these poor, personality-less men who, I now know, were only doing the best they could.
I realize now that I had it all wrong. I have a real story to tell. One that, I hope, will teach lessons of simple joy and gut-mustering courage.
You see, I have a lemon
girdle. That’s what the
three-year-old me called it. I
remember gazing at the lemons hanging in-wait on the tree in our square
backyard, imagining them as ladies, waiting to be plucked and bound, waiting
for their bodies to be transformed from ovals to hourglasses. Lord knows I wish that were all it
was. A cute little
cinch-in-your-waist girdle, colored yellow and puckered. In reality, it’s not-so-cute,
not-so-little and not-so-yellow.
Puckered? Certainly.
It’s Muscular Dystrophy. Limb and Girdle Muscular Dystrophy. LGMD.
Up until recently, each time I told someone I had it, the words stuck to my teeth
like the trash snagged on the bars of the street gutter, blocking the rain’s
flow.
In fifth grade, the conversations
went something like this:
Them: “Why don’t you do P.E?”
Me: “I have bad legs,” Please
don’t ask more…Please don’t ask more…
At twenty-six, the
conversations went something like this:
Them: “Why are you taking the
elevator?” Giggle and sneer. “
Feeling lazy?”
Me: “No [asshole]. I have Muthclar Dystrophy.”
Unless you see me
climbing stairs, leaning heavily onto the handrail that lines the right side of
the case, heaving my legs up one-at-a-time, I might be able to fool you. You might think I’d be able to hop on a
bike and go for a Sunday ride with you or put on my tennis skirt to go ‘hit
some balls’ or join your Tuesday night bowling team. If we spent a little more time together, though, you’d see. My pace, a bit more turtle, a little
less hare; my ability to lift, more Wimpy than Popeye; my getting off the
couch, more elephant, less gazelle.
The first time I
felt different snuck up on me like a stealthy little thief. Pre-kindergarten was a time unaffected
by difference. My earliest
memories date back to when I was two—the time I choked on a hotdog and croaked
“mom”. No sound escaped until she held me over the kitchen sink, her arms
wrapped around my stomach. With
one strong squeeze, the hot dog shuttled from my mouth, slammed against the
kitchen window and rolled down the drain.
I remember the joy of Silly Puddy removing Popeye’s image after being
pressed against the comics. The
smell of Tia Maria tinkling from my parents’ icy glasses as we sat in fraying
lawn chairs in front of our tiny, flat-roofed house. Yogurt Push-up Pops and drive-thru dairies.
That was the Age
Before Comparison. The Age before
“me” and “them” existed. Truly
young children are really good at acceptance, aren’t they? And so, when I toddled through summer
sprinklers with other three-year-olds in the neighborhood, I thought my
not-keeping-up was just my love of water—my wanting to take my time. Yes, even at three, I was aware of
these thoughts. Not as Freud would
have been—nit-picking every innocent action and interpreting every crazy dream;
maybe more like Big Bird draping his wing around my shoulders in approval of my
self-awareness or a congratulatory wave of a trunk from Snuffalufugus.
My childhood began
on a tree-lined, Spanish bungalow-dotted street in a suburb of Los
Angeles. Memories of that time
flit through my mind, little flickers of a movie reel, yellowed on the edges,
little lines squiggling through them.
They are misty. And
shrouded in happiness.
My family took
frequent trips to the Los Angeles Arboredum, my sister, only nineteen months my
senior, and I dressed like twins.
Boyish haircuts. Flowered
dresses. Mary Janes. We would walk the endless expanse of
grass, throw dried corn kernels purchased from a red candy dispenser whose
handle sighed crrrrrraaaannnnnkkk-click as it swallowed a dime and spit out the
food, and climb trees to pose for countless pictures. In these pictures, my sister and I peered down at the
camera, two little sloths with arms wrapped around the tree’s trunk. In all honesty, I don’t remember if we
climbed the trees or if my dad had hoisted us up there, bracing us with his
arms until he knew our hold was fast.
I choose to believe that we climbed because that’s an adventure I’d be
unable to explore today. My limbs
now so planted to the ground, so made heavy by gravity.
Sometimes the
whole family—aunts, uncles, cousins, grandmas—would picnic there. It was the time of polyester. The cousins and I would run around, playing tag and somersaulting over the springy grass.
All giggles and squeals and flailing arms.
Even in those
toddler days, even surrounded by my family, I wondered if they knew I was
different. If my cousins, who
could cartwheel and backward handstand their way from pond to pond, wondered
why I couldn’t. I wondered if my aunts
and uncles and grandmothers knew or if my parents had chosen to keep our
shameful secret to themselves.
As
an adult, of course, I now realize the bond of family. The way we fall into each other, our
arms ready to brace our own bodies but hoping that they, our blood, will beat
the inevitable 9.8 meters per second per second spell cast upon every falling
object by Gravity, that omnipotent magician. The way we tell each other our fears in hopes that by
voicing them, we will steal some of their power.
Some of you, dear readers, are sitting on your couches
calling me crazy. For some of you,
your family members are the last people you turn to. The baggage they’ve packed in your little life suitcase
already oozes out of your zippered edges.
No, thank you, you think.
But my family is
different.
Of course they
knew.
I remember the day
I was “diagnosed”. My sacrificial
lamb was my sister who was not reaching the physical milestones she should have.
On my diagnosis
day, I sat not inside a doctor’s office but in my Grandma Lily’s living room, the
room at the front of the house with a huge window. I vaguely remember the dusk sinking through that window, my Uncle Chris sitting
on the couch, his arms folded behind his head, legs stretched out. Adult-talk
swirled around the room in a susurrus of whispers. Anticipation hung heavy. My mom and dad and sister absent.
That’s it.
That’s all I
remember.
It wasn’t until
years later that I realized that that was the night. The night. My sister
had returned from that night with two scars. One little pink slug on her left upper arm and one little
pink slug on her right thigh. The
doctor’s at UCLA Medical Center had given them to her as a parting gift. The scars. And a diagnosis of Limb and
Girdle Muscular Dystrophy.
At thirty-eight, I can finally say it without stuttering. It comes out almost smoothly every single time. And this blog is a place for me to celebrate what it means to be disabled and beautiful and have a body that teaches me something every, single day.
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