My Heart-Shaped Albatross

Today I got an anonymous Valentine's gram from a student.  It came in the form of a sweet note thanking me for being so nice and a red, beaded necklace with a good-sized, plastic heart pendant hanging at its end.  This is not an ordinary, lifeless heart pendant.  No.  This pendant lights up.  At three different speeds.  When you first push the button, it blinks fast--a heart-racing, terrified-rabbit beat. Upon second push, the blinking slows to a regular rhythm, like a steady drum. After the third push, the light remains on, unbeating, like E.T.'s tiny heart glowing red through his chest.  And, of course, there is a fourth option: no light at all.

I made a joke about this necklace to my students today.  I talked about how much easier it would be if we all wore these pendants and used them as signs of our affections towards others.  Our own hope-giving albatrosses tied around our necks.

If we like someone, we could show them by only pushing the button once.  Allowing the little plastic heart to mirror what our actual impossible-to-see heart is doing--racing with the excitement and possibility of new love. Allowing it to speak for us when we are too afraid to admit how we feel.

If we only wanted to be friends with someone who is interested in more, we could push our plastic buttons three times.  You know, let our non-flashing heart beat break the heart that we're unable to break with our words.

And, of course, if we just weren't interested or had fallen out of love, we could turn our heart lighthouses off, so as not to draw any more attention.  Our heart's own little Closed sign.

Damn it if my mom wasn't right when she told me there was truth behind all jokes.

Although I said this to my students as a funny intro to wishing them a happy Valentine's Day, there's a huge part of me that wishes it were true.  That I had had this little harbinger around my neck to speak my truth for me.  And there's another part of me that wonders how different my life would be if I had.

It might not be obvious here on this blog where I seem to spew the most intimate details of my life, but I've never really worn my heart on my sleeve--or around my neck or whatever is the current fashion.  Especially when it comes to love.  I have always feared the non-blinking, or, worse, the darkened-heart response.  And so my feelings have, for the most part, stayed locked in my chest or deep in the recesses of my gut.  Protected from harm.  But also protected from that leap of faith.  From risk.  From true love. Somehow I have fooled myself into thinking that if I hold onto the love, keep it nestled deep inside, then it can't be rejected.

I picture my insides like the branches of a tree, tiny cocoons of potential love, containing caterpillars awaiting transformation into butterflies, kissed upon them.  Some so old that they are no longer pushing to escape.  The love-that-could-have-been mummified but still sticking to the branches in faint remembrances.  Others are fresher.  Inside them, half-caterpillar-half-butterflies nudge. Words and feelings yearn to be set free.

As I've become more in-touch and in-like with my feelings, these words push more.  Newly-found confidence eggs them on.

And on this day of celebrating love I wonder if it's worth the risk.  If it's worth wearing my heart around my neck and letting it be seen.  Letting it speak my message whether or not the other person's heart pitter-pats in return.

Perhaps we all would be better off if our hearts, our feelings--fears, hopes, needs--were out in the open. Easy to see.  Then we could stop the guessing game and get on with living our truths.  And we would realize that we, as humans, all share the same fears--rejection, loss, separation--and the same needs--to be loved, to belong, to be recognized.

In all honesty, I don't think I'll be picking up the phone to confess my love tonight.  But perhaps I will marinate in the idea.  And nudge at my own pride to see if it will unravel so that, perhaps, my heart will fly.

This Green(ish)-Eyed Monster

My eye color is somewhat unique.  From a distance, it looks your standard brown, but when you get closer, you will see a good-sized smattering of green--a little like a baby's diaper after he's eaten green beans, perhaps.  Although I've always identified myself as a "Brown-Eyed Girl" (Thank you, Van Morrison, for putting us on the map), this week I'm working to come to terms with that part of me that is green-eyed. More specifically, the Green-Eyed Monster of Envy that lurks just below my almost-perfect exterior.

This monster exists in all of us.

This week, for me, it's time she and I had an honest heart-to-heart.

Yes, I admit it (finally).  I am a jealous person.

Envy is, of course, part of this human condition of ours, but for those of us who are disabled, I might argue that envy runs a bit deeper.  Its claws a bit sharper.  On a daily basis, I look at the able-bodied around me and I wish that I could trade places.  Not that I wish for them a life with a disabled, stubborn, and defiant body, but just that I want their seemingly perfect one.  One that allows them the freedom to do so much that I can only dream about.

For example.

The crouch.  When my friends crouch, bent-kneed and butt inches from the ground, to pick something up or soothe their toddler-aged children and then unfold themselves, like some real-life Transformers, back to standing position, I am filled with such intense envy, I practically drool.  Being in the body that I am, I just don't understand how any body can do this.  How the quads could spring back to life after mere seconds of dormancy.  In this body of mine, if I squatted into this position, I would be stuck there.  In fact, I think I would probably just topple backwards and be left wondering how to get back up.  Oh, I do dream about this.  In these dreams, my legs, too, are made of springs and, like some Russian dancer, I vacillate from squat to stand and stand to squat.  Oh the joy of this seemingly small freedom.  And so, there's envy number one.

Envy number two: The marathon (or half-marathon or 15K or 5K or whatever version is being run at the moment).  For some reason  (which I don't quite understand but I'm sure someday will), I am surrounded by runners.  Everyday, my friends are posting on Facebook about their daily miles logged; they're signing up for half-marathons and Lulu-Lemoning themselves (like, legitimately wearing the clothes because they are athletes not because they want to wear them as a badge) around town.  In the words of Holden Caulfield: It kills me.  I am champion at putting on the brave, I'm-so-proud-of-you face.  While inside, there's a tiny part of me that's dying.  A tiny part of my perfectionistic pride that feels like it, too, should be able to partake in this odds-defying feat.  That it, too, should experience the endorphins only running can release and burn the calories that only running can burn. Oh, how I seethe.  How I wish that I could be them and they could be me, just to have the tiny morsel of understanding of what I'm missing out on.  Me to have a taste of It and them to have a taste of the lacking.  So that we can be simpatico.

Certainly I cannot be the first disabled person (or non-disabled person) to feel this shameful jealousy.

The chair/couch access, a strange-sounding envy number three.  I've mentioned in an earlier post that whenever I enter a room for the first time, I assess the seating situation.  If a seat is too low or armless or too light for me to put all of my weight on to stand back up, I will not sit there.  My pride (still after all of this self-work) too great to say screw-it-they'll-have-to-see-me-haul-myself-off-of-that-impossibly-low-seat.  This hauling myself up not an option because it feels so ugly to watch.  "Normal" people never think about this.  They never walk into a room and have to assess it's accessibility.  But I do.  And there are people who have to assess it even more intensely than I.  I get this.  I know that I am "lucky" and "it could be worse", but that does not discredit the fact that right now, in this body, there are struggles that must be faced.  There are truths that must be spoken.

Envy four: the toilet/bathroom situation.  So, read the above.  The same goes for toilets.  Especially those stalls/bathrooms that close with some sort of barrel-lock.  Sometimes my hands aren't strong enough to let myself back out.  The first time I ever got stuck I was about five.  My sister and I had been Brave Little Girls and gone to the bathroom by ourselves.  That door was so heavy.  So heavy that we couldn't get out. Thankfully, our dutiful mom came in after us and set us free.  The second time I got stuck I didn't have youth to blame...I was in my early twenties and had flown to Chicago to visit an old college friend of mine. We went to a bar called The Liquid Kitty.  It was a cool joint that showed old movies and served a mean Cosmopolitan.  Its only flaw was that the bathroom was a single-room-barrel-locking number in which I got stuck.  Oh what a panic. For this, I will blame the vodka. Ever since then, I test the lock before I fully close the door.  Still.  Twelve years later.

Envy five--and perhaps the most painful envy of all: swinging a toddler onto one's hip.  I am lucky to have so many children in my life.  Their mothers are my closest friends and confidants who are constantly squatting to talk to their tiny people.  Besides my being in awe of their ability to squat (and mother so beautifully), I am also in awe of their ability to spring back to standing position, all the while swinging that thirty-pound person onto their hips.  Their ability to pull that toddler in, cradle it, and soothe it with a whole-body sway.  This, I could not do.  The baby is too heavy. And it hurts to watch.  Not because I wish any different for my beloved friends but because I wish different for myself.

I am not ashamed to admit it...well, maybe a little.

Yes, I know that when there's a will, there's a way (How do you think I've thrived these past thirty-eight years?), but that doesn't mean that I don't often wish that I could be the one taking the easier route and not always the one who is forced to adjust.  And, so, I vulnerably share with you my areas of envy so that perhaps the next time you do something with ease, you might take a pause to say thank you for the body that you do have.  And I will do the same.  For, although my body is far from perfect, it is mine.   And it serves me as well as it is able.

And for that, I am grateful.

So, maybe tomorrow I'll look in the mirror and the green in my irises will be gone, replaced with content-with-life brown.  On second thought, it's the green that makes them beautiful because it is the green that makes them unique, makes them human.  The green I hope never goes away.

Making Peace with the "N" Word

I was supposed to have a date tonight with a guy from an online dating site.  He had all of the trimmings a girl looks for:  engineer, home owner, handsome face, grown children. And he pursued me quite feverishly.  Sent me email after email, called, texted.  You know, made it known that he was really interested in getting to know me.

So, last night we set up our plan to meet for an after-work drink at a nearby sportsbar.

Easy enough.

Except that, about twenty minutes after hanging up, he sent a text message asking for more photos of me.  As if the pictures on my profile page presented some false me and he was worried that I would be ugly.

Trust me.  I get where he's coming from.  If I had a dollar for every time I went on an online date where I analyzed a man's face, trying to recognize even a hint of the man from the photos, I'd have enough money to buy myself a couple of nice bottles of wine.

This text asking me for more pictures threw me off-guard.  And gave me the heebie jeebies.  And so I texted him saying just that--that I was uncomfortable sending them, that the photos on my page were all taken within the past six months, and that he would see the "real thing" tomorrow.  A healthy, balanced response, in my eyes.

About ten minutes later, I got a response asking again for pictures.  No acknowledgment of my polite no.

Even more perturbed at this point, I put on my big girl pants and texted him a firm:  No.  I am not comfortable with that.

Do you know what the guy did?  He cancelled our date.  Just because I wouldn't send him additional photos.  Just in case I was ugly (And, just for the record, I am with you ladies who are shouting Amen and Hallelujah from your couches right now, because I sighed a big good riddance to myself, too.).

Okay, so this is just one story about my run-in with one online-dating chump.  And in the realm of online dating horror stories, this one ranks pretty far down on the list.  I realize that.

But there's a jewel in it.

A little grain of sand that has been molded into a pearl by my growing self-esteem.

I said NO.

For those of you who are people-pleasing-addicts like me, you know how hard it is to say the "N" word.  It brings a fear that those to whom we say NO will never again reach out to us, ask us for anything, or befriend us any further.

As author Brene Brown says in her book, Daring Greatly, we women are expected to do it all and make it look effortless.  And, although I realize this pressure is compounded for women who have children, this pressure is also difficult on us single ladies. We have pressure to do it all. Succeed at our jobs. Pay our mortgages and all of our bills. Be a supportive friend to everyone.  Keep our bodies in shape and our hair colored.  Make being single look like a ticket to freedom. And for those of us who have a disability, especially for those of us who are recovering perfectionists, this task is even harder.  In addition to doing all of the aforementioned tasks, we have to defy the odds stacked against us.  Or at least try to defy them...without so much as a grimace or a drop of sweat.

So, for all of these reasons and so many more, I have lived a life where I could not say no.  I have piled commitments onto my overflowing plate, and, instead of recognizing that the plate had reached max capacity, I have chided myself for not being strong enough and pretended that that plate was really a platter.  In the past, I found great pride in listing off all of my accomplishments.  All of the "things" I was doing.  As if it were they that gave me worth.

Over the past few months, I have learned to say the magic word.  As you can see, I'm still working on the confidence in the no, but I've come a long way.  I have whittled away at the tasks at-hand (even the fun ones) so that I can have a little more me time.  A few more candles-lit-and-me-on-the-couch nights.

Last night marked a milestone in my growth.  There was a time when I would have given in to pressure like this, especially from a man because I would have been afraid I would lose his attention.

In this present moment, though, I realize that my own comfort is most important.  That saying no protects that delicate core of who I am.  Who we all are.  It allows us to strip away distraction and settle in to the moment and just be good enough.  For who we are, not for what we do.

First, Let Me Air My Dirty Laundry

Dating with a disability is rough.  Especially when the disability is not always outwardly obvious.  I can get away with faking it for quite some time.

I am a master.

I know which restaurants are stairless.  Which ones have higher chairs (the easier to get out of).  Which parking spots to use so that the man can walk me to my car without me having to step off of a too-high curb.  I've learned how to politely decline dates that involve any activity more than a casual stroll where I could blame my snail's pace on wanting to breathe in a little more salty air.

The longest I've gone before revealing my "truth" is seven weeks.  Yes, I dated a man--saw him two to three times per week even--for seven weeks before my grand confession. In my mind, this "truth" was a fatal flaw.  The only reason I was unlovable.  We all have these.  In those recesses where we feel the most shame.

I would have kept the ruse up but I finally had to tell him because I fell.

And when I fall, there is no springing back to my feet.  I've always marveled at the able-bodied person's ability to do that. Not I.  I have to crawl to a chair or a curb or a tree stump (whatever raised surface I can find).  I then have to lean my body weight on that platform and inch my legs into standing position.  If there is no raised surface?  I shudder to think. I used to be able to do a sort of downward-dog in reverse and make my way to my feet, but time has stolen that gift.

And so, Mr. Seven Weeks saw what I deemed my ugliest scar.  And, I'm sad to say that things were never the same after that.  Although, I think it was my lying by withholding the whole truth that really bothered him and not the Muscular Dystrophy itself.

I have online dated off and on for the past ten years.  It's an interesting business, this presenting yourself for a world of strangers to browse your profile in some modern-day-dating-produce-stand.  I'll take that one.  Oh, wait, that one looks nicer. 

People put their best face forward on these sites.  Literally.  Choosing the best picture--or in some odd cases, the creepiest--as their profile picture and writing about  how they want to save the starving children and would do anything for their grandma.

In my past, I did the same, painting the best possible picture of myself.  I posted only the pictures I'd retouched.  I included only information that made me sound sassier and more worldly than I actually am. I did not include any mention of my disability, hoping to hypnotize the guy with my irresistible charm and then drop "the bomb" when he was so entangled in my beautiful snare that he wouldn't even blink twice at the mention of Muscular Dystrophy.  Hey, a girl can dream, can't she?

I'm both sorry and happy to say that this furtive plan never worked.

On these dates, I spent so much time avoiding the big reveal that I never truly got to be myself with any of these men.  During dinners, I worried about where he would want to go next.  About the curb access and chair height there.  I worried about whether or not he drove a lifted truck that I wouldn't be able to climb into.  And about what would happen if he invited me over and he lived on the second floor.

And so the relationships would end because the guy felt bored and I felt disconnected.

These times left me disenchanted with the whole love-thing.  I have to admit, I was more than a little bitter.  I always blamed my singlehood on not having met the right man.  But what I failed to see was that I was never the right woman because I was never happy being my whole self.  I felt like, in order to be loved, I had to compartmentalize the part of me that I deemed "dirty" and "unlovable".  I had to leave it off of my profile, if you will.

After taking almost a year off from the online dating scene, I recently rejoined it.  And this time I'm airing my "dirty laundry" right from the start.  It's right there--in the first paragraph of my "About Me" profile.  And you know what?  I'm getting a lot of attention.  And you know what's even better than that?  When I go on dates with these men, I finally get to be in the moment, as my broken and beautiful whole self, instead of living in the What-Ifs.

That, my friends, is freedom.

Hello, 2013.

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.

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.

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.