Writing off the Past

Lately I have been working on getting rid of stuff that I no longer love, use, or need. Sometimes, the process is exciting and fun. I love getting rid of clothes. I find it easy to pull uncomfortable or ill-fitting clothes off hangers and toss them in a pile for donation. I take pleasure in pushing old bills and bank statements through the shredder. My kitchen cabinets have been cleared of spare glasses, plates and serving platters that hardly ever saw the light of day.

When it comes to sentimental items, however, the drawstring on my proverbial trash bag cinches right up. I can’t get rid of the letters from my 5th grade best friend! What if I want to re-read them some day? If I get rid of something someone gave me, does it mean I didn’t appreciate it?

There’s a lyric I lived by for a long time; Keep your old love letters, throw away your old bank statements. I found it romantic to picture myself as an old woman, reading through my box of love letters and reminiscing on my youth. Yet I kept that box of friendship and love letters for nearly 20 years without reading a single one of them, or even thinking about them.

It’s true. I had a shoebox full of old letters, starting with my 5th grade pen pal and ending with my first and last long-distance boyfriend. Last week, I finally sat down to sort through the box and determine if any of these letters were worth keeping.

The discard pile.

As it turns out, what my friends and I wrote about when I was in 5th grade, middle school, and even high school, was pretty lame to look back on. To be honest, I didn’t even read all the letters after the first few. I considered how my 5th grade pen pal and I lost touch after a few years, and how many of the people whose letters I’d kept are no longer part of my life, and I actually don’t miss them. That sounds kind of mean, but I don’t intend it to be. The truth is, people move on.

Of course I did not throw away ALL the letters. I did keep a handful – those from my very best friends, which, just by looking at the envelope, I can recall the excitement of getting a fresh letter in the mail and tearing it open to see what it said. I also kept the love letters, though it was a little weird to read them now, so many years after having parted ways with the writer.

So that’s one less box of “stuff” on the shelf. Now to get sorting through the boxes of get-well cards and birthday cards that I’ve kept since 1986. I plan to scan anything that had truly significant meaning to me and discard the rest.

At one point in life I thought it meant something to hold on to all these items, but the reality is, all this stuff just weighs you down! I just keep telling myself how much better I will feel once I’ve gotten rid of the detritus in my life!

Everybody’s Got Something

It is the first day of first grade. I’m decked out in my favorite dress (blue, of course) with matching barrettes in my hair. I haven’t yet grown to dread the bus ride or the seemingly endless succession of school days that lie ahead. I climb onto the mostly empty bus, take a seat about halfway back and wave goodbye to Mommy.

Down our road and around the corner is a new housing development with lots of young kids. As the bus nears the stop, the kids scurry to pick up backpacks and lunch boxes and cluster in a group by the curb. They pile onto the bus and I take note of the familiar faces. There’s Dana and Chrissy and Emilee, all girls from my class last year. There are a lot of older kids I don’t know, and a couple of the boys sneer at me as they pass my seat, but I do my best to look past them and connect with my friends. I see a bald head pass by… who is that? Her eyelids are droopy and she looks barely awake. Even though I had not heard of cancer before then, it is clear to me that this girl is very sick.

As we travel on to school I begin to wonder where my friend Jessica is. I hadn’t seen her get on the bus. Then something dawns on me. I turn to look at the mysterious sick girl sitting a couple of seats back and realize that it’s her. She looks almost nothing like the energetic, goofy girl I remembered from kindergarten.

I soon learned that Jessica had leukemia and that the chemotherapy had temporarily taken her hair and her energy. In the years to come, I would find out that the treatments for her leukemia had done a lot of damage to her body. She ended up enduring more gruesome medical treatments than I ever did. Yet through the years she always seemed to have a smile and a positive attitude.

I wish I could say that knowing Jessica put my own troubles in perspective. Perhaps it did a little bit, but I still spent a lot of time feeling overly self-conscious about my looks. Jessica’s hair eventually grew back and by then she was energetic and bubbly once again. Those of us who were closer to her saw the scars from her heart surgery, and understood that her kidneys and bladder had also been damaged from the treatment.

Looking back as an adult, it is horrifying to comprehend all that Jessica went through. As if having leukemia and chemotherapy wasn’t awful enough, the process of ridding her little body of cancer essentially ruined the rest of it. While I was having plastic surgery done on my face, she was having open-heart surgery. While I was taking antibiotics to battle my ever-present ear infections, she was taking medication to keep her body from giving out way too early.

When we went on an overnight class trip, she asked me to help her put on a diaper before bed. Due to the kidney/bladder damage from chemo, she was already incontinent at the age of 11. Meanwhile, I just needed to take out my dental appliance and clean it, put some Vaseline on my eyes to keep them from being stuck shut in the morning, and put my ear drops in. Despite my ever-present self-consciousness, and her seeming lack thereof, I did not want to trade places with Jessica.

Perhaps it is an unfair comparison. Really the only thing we had in common medically was knowing that being in the hospital meant you were in for some kind of pain and suffering. Luckily for me, mine usually only lasted a few weeks post-op and then I was back to normal.

Many years later, I was browsing an online newspaper from my childhood hometown. Amazingly I came across an article about Jessica. Through this article I learned that she’d had a successful heart transplant. It took my breath away to know she’d gone through this. I now know that she is married and that she and her husband adopted several children. Considering what she went through, it’s amazing that she is still alive. Talk about strength and perseverance!

So why do I share this story? Perhaps Jessica’s situation impacted me more than I knew. Despite all that she went through, she never gave up. Perhaps it helps me remember that no matter how bad you think you have it, you can always find someone who’s got a rougher road.

It’s not even always about physical stuff either. There are so many people who’ve got invisible hurt going on. You just never know what others might be dealing with, or may have gone through in the past.

Maybe you were born missing a body part or two. Or maybe some body parts didn’t form right. Maybe your parents got divorced when you were little. Maybe you never even knew your biological parents. Perhaps on the outside, your family seems “normal” and happy, but there is anger, bitterness and grief. Maybe you never learned how to deal with your emotions. Maybe you’ve got a chemical imbalance and you can’t control your thoughts or your behavior like other people can. The list goes on.

What it all comes down to is, everybody’s got something. I’ve often wondered if anyone really does have it worse than anyone else, or if it all evens out somehow in the end. What do you think?




Man, I have been slacking with posting here (or anywhere, really) lately. I actually thought about taking a little hiatus while I try to focus on some other aspects of my life, but that just seems too severe. Plus I want to be able to write when I feel like it, and the moment I say “I’m taking a hiatus” I will probably be struck with an uncontrollable urge to write.

Let me just give you a little update on things here. First of all, today I FINALLY called the Cheyenne Mountain Resort to book the extra nights we’ll be staying for this summer’s NFED Family Conference. I called the reservation line and it automatically puts you on hold while you wait in the queue.

I’d like to just mention that the hold music was so fantastic that I wanted to sit there on hold for as long as I could. I’m serious! As I listened to it (and did a robot-like dance in my chair), I wondered if it was the hold music that they talked about on an episode of This American Life, which I used to listen to religiously. After I got off the phone I googled “awesome hold music” and found out that yes, it was the same tune.

Now that I’ve piqued your interest, check it out for yourself here. I’m actually listening to it as I’m writing this post.

Also, if you’ve never listened to This American Life on NPR, you might want to take a gander. An auditory gander.

Speaking of auditory. Yesterday I had a routine visit to my ENT. Good news! My ear is stable. Not that I really expected anything different, but it’s always nice to get confirmation that you don’t have a diseased inner ear. I also had a hearing test. Blah.

I’m not terribly fond of the audiologist my doctor uses. This is the same woman who got the silicone stuck in my ear last year, but even before that I found her annoying. First of all, she speaks really softly, which is a bad quality in a person who is working with hearing impaired people, right?

One of the other things that makes me not take her seriously is that when she does the test where she says a word and I have to repeat it, she doesn’t do a very job of covering her mouth, so I can see her forming the words on the other side of the booth.

Also, it’s the SAME WORDS over and over! They are going to think I had a miraculous regeneration of my hearing because I know it’s:

Ice cream. Toothbrush. Sidewalk. Hot dog. Backpack. Lollipop.

Add a wind sound in my good ear.

Hot dog. Ice cream. Toothbrush. Backpack. Lollipop. Sidewalk

I’ll admit it gets hard when it is just one syllable words. Sometimes I have literally no idea what she said, and I can’t even think of a word to repeat back so I just shake my head in defeat.

At a couple of moments during the test, she turned up the wind sound SO loud in my good ear that I actually had to pull the headphone away from my ear. What the hell. Maybe this is what I don’t like about her the most. She does not seem to notice how sensitive my ears are.

It seems like a paradox that I could be so hard of hearing, yet so sensitive at the same time. I have been thinking about it a lot in the last 24 hours. I am not sure if it’s because I have to struggle to hear sometimes that I am so sensitive, or if I would be this sensitive even if I could hear perfectly. In fact, maybe it’s a blessing that I can’t hear perfectly, because maybe all the loudness in the world would drive me insane.

I really don’t like loud noises. I never have. When I was growing up, my dad had a dirt bike. I don’t think I ever got within 50 feet of it when it was turned on because it was so loud. In fact, when I knew he was going to start it up, I would run into the house and cover my ears. Even now, I practically have a heart attack when a motorcycle drives by me and revs the engine.

Come to think of it, maybe I am just a huge wimp…

Well, that’s enough of an update for now. I need to hit the hay! Goodnight and good luck!

The What’s Underneath Project – Melanie Gaydos

I recently came across something cool: The What’s Underneath Project. The idea is to get people to talk about their sense of style and how they present themselves as they are slowly removing pieces of clothing (down to their undies). It’s not a sexy striptease, but a removal of layers and defenses. I think the idea is to show that “style” goes deeper than the clothes you wear. I obsessively watched nearly all these videos yesterday and found a lot of them to be really interesting because people had some really profound things to say. Other people, I just wanted to slap because, hello, you look freaking awesome, stop hating yourself. 

Of course the one I really want you to look at is Melanie Gaydos’ video. Melanie is a model and has a form of ectodermal dysplasia. I’ve talked to Melanie a couple of times online, and I was always impressed with her strong sense of self and her ability to push herself out into the public eye. When I was younger I had fantasies of being famous, but seeing as I can’t even go to the grocery store in flip-flops, for fear of people gawking at my feet, I don’t expect I’d handle fame too well. 🙂

Melanie has some incredibly profound things to say in her video. Check it out and be amazed.

I really hope to meet this chick in person someday soon! Rock on, Melanie!

To see her modeling work (warning: lots of nudity), visit melaniegaydos.tumblr.com/  


Color Me, Don’t Color Me

The year is 1991. Kids really do wear their hair in aqua-net-encased creations of spiked mullets and towering bangs (the grunge wave has not yet reached our suburban landscape). My personal soundtrack consists of anything REM, the Bryan Adams’ single “Everything I Do”, and Disney’s Little Mermaid soundtrack. I think I am turning out to be pretty cool.

This is actually my 7th grade picture, but I had the same glasses in 6th grade so just go with it.

I have just started the sixth grade at Log College Middle School, and while I would never admit to actually liking school, it’s going pretty well so far. One day a teacher asks me to run a note to the principal’s office during class. The hallway is strangely empty and quiet without the usual between-class hustle and bustle. I walk briskly and cheerfully towards the principal’s office, enjoying my few moments’ escape from the classroom. At the far end of the hall I notice another girl walking toward me. As she gets closer I see her face is crumpled in a frown. Her lip curls up in a sneer.

“Why don’t you get some markers and color your hair?”

My heart leaps to my throat. Markers? I am so taken back by her strange statement that all I can do is look at her with a stunned expression. My face grows warm and I quickly turn away and walk faster towards the principal’s office. “Markers!” She yells at my back with a laugh.

Which color should I choose for my hair?

Which color should I choose for my hair?

By this time in my life I am used to kids finding something about me to make fun of, or to be freaked out by. I’ve come to expect it.  For the most part I’m able to ignore the stares and the whispers, but the feeling of being different and weird never really goes away. Still, there is always some hope that I can get through a day without anyone commenting on my looks, or pointing out how I’m different. 

A few days later, I am walking down the hall with a group of friends and I see the girl coming towards me again. I tense up and wait for her to strike. Our eyes lock as she approaches. She wrinkles up her nose and mutters “Get some markers, and color that white hair!” as she passes. “Shut up!” I whisper, feeling embarrassed. My friend Emilee turns around. “Were you just talking to that girl?” She asks. “No, it’s nothing,” I assure her.

Weeks go by and this continues. I don’t see this girl every day, but whenever I do she sneers and says something about markers. One afternoon in the library, I come across the yearbook from the previous year. I flip through and look at all the kids a year ahead of me. I spot her almost immediately, with her jaunty grin and cold eyes. The text beneath the picture says Moonbeam Landingham.

Wait, what? I laugh out loud right there in the library. Her name is actually Moonbeam Landingham. It’s like a made-up name! I am delighted with this revelation.

The next time I see her in the hall, she asks me if I’ve got any markers yet. “No, Moonbeam,” I retort, “Do you have any I could borrow?” Her eyes widen. She scurries up the stairway and I call out her name after her once more.

Moonbeam* never bothered me again after that.


Her name wasn’t actually Moonbeam Landingham, but it was something similar. I always wondered if her parents were hippies or if they were just having fun playing with an unusual last name.

While at the time I passionately hated “Moonbeam Landingham” because of the way she treated me, I have since realized that she probably had issues of her own that she was dealing with and maybe it made her feel powerful to pick on someone like me. With a name like hers, she probably got picked on herself.

What I learned from that experience was that sometimes all it takes to stop someone from bothering you is to stand up to them and show them you won’t take it. In this case, it took me discovering that this girl had a funny name to give me the courage to speak up. I’ve also learned that oftentimes people who are mean to others are really unhappy themselves. Of course that doesn’t give anyone the right to be mean, but it’s a reminder that it’s THEIR problem, not yours.

Happy Birthday to my Mommy


Mom’s Birthday 2014

Today is my Mom’s birthday.

Mom and I go way back. As her firstborn, I got to break her in to the whole motherhood thing. This arrangement worked out pretty well for me. (I’m just a little bit spoiled.) For her, I may have raised her blood pressure a bit but overall I think what I put her through may have made raising three additional kids a piece of cake.

Coming at ya from 1982.

Coming at ya from 1982.

Mom was always really good at taking care of me when I was not feeling well. She’d set me up on the sofa with pillows and blankets, make sure I had something to drink and that I took my medicine on time. If I was able to eat, she’d make me soup or spaghetti (my favorite), cut into tiny pieces so I wouldn’t have to chew much. She’d clean up my barf and comfort me as I cried. She’d say things like, “I wish I could take the pain away from you.  I wish I could have the surgery instead of you.” As a child I couldn’t understand why she’d want such a thing, but if it had really been an option, I would have taken her up on it. It wasn’t until I was an adult and I got to be the one wringing my hands in the waiting room that I understood how she felt.oh beautiful for spacious skies

Of course, I have happier memories of my early life with Mom. She shared her love of reading with me, which is a gift that will last a lifetime. She also shared her passion for the outdoors – the smell of the woods in autumn, the sight of a hawk in a tree, and a heart-swelling appreciation for the ever-changing beauty of an expanse of sky.  She was always a creative thinker and came up with so many fun things for us to do. We had a pebble hunt, like Pooh and Piglet. I was encouraged to write my own stories and illustrate them. When I wanted to learn to play the piano, she drove me to lessons and somehow did not lose her mind listening to hundreds of faltering renditions of ‘Fur Elise’ and ‘Hey Jude’.piano-kid-playing-pic

Mom’s lifelong pursuit of knowledge, of thinking for herself and reinventing herself when necessary, has been the most inspirational to me. She is most definitely a self-made woman and I continue to learn from her. Her life has had many ups and downs and she has worked her way through many difficult situations. When I look back to where we were even just 5 years ago I am amazed at how much has changed. Looking back 15 or 20 years is even more astounding. 

So thank you, Mom, for all you’ve done for me and our family, and above all for being a kind person whom I am proud to call my mother.

Keeping Things In Perspective


The first time I saw the night sky in it’s full glory, I could hardly believe my eyes. Stars sparkled in all colors. The milky way rippled across the dark like a shimmering ribbon. Shooting stars fizzled above the horizon. As my eyes adjusted, I saw that there were more stars than I could ever have imagined, stars beyond stars, multiplied by millions. To infinity and beyond, for sure. My whole family was mesmerized by the night sky.  Every evening we’d pile onto the deck, wrapped in sweatshirts and huddled in blankets against the cool night air, while fireflies blinked and mysterious creatures chirped and chattered in the dark shadows of the trees. For hours we would lie there looking up at the sky, counting satellites, learning the constellations and waxing contemplative.

That was the summer I turned 15. My family spent 3 weeks in Vermont, house-sitting for family friends. Until then, I’d never really been outside the suburbs of some major metropolitan area. I’d never seen the sky without the pale haze of light pollution and a constant flow of airplane traffic. Despite that, I’d always had a healthy appreciation for nature, having spent many childhood days exploring in the woods and along the creek that ran behind the park next door. Early on, my parents instilled in me a love of hiking and discovering. We’d take day trips to nearby state parks and to the Poconos, where we climbed endless trails and turned over countless stones looking for fossils. But it wasn’t until those summer nights in Vermont that I felt the jaw-dropping sense of awe that comes with realizing just how vast and magnificent the Universe is.

Whenever I find myself going through a rough time, or needing some reassurance that my life is not spiraling uncontrollably into disrepair, I remember how it felt to be looking up at that night sky, staring back at the Universe. Looking out into the cosmic depths really puts life in perspective. I am so very small and insignificant. The Universe is so vast and mysterious and I am only a teeny tiny part of it all. Suddenly, worrying about how my nose looks in profile seems ridiculous, not to mention the gazillion other silly little things that I worry about every day. In the grand scheme of things, my problems are fleeting and trivial.

For me, being reminded of my unimportance is a good thing. I don’t know why but I have always felt like I am supposed to be doing something outstanding with my life. Maybe because I’ve often been told that I’m special and I’ve been so brave to go through the various medical adventures (though mine are really not that scary compared to some people’s). Throughout my life I’ve often felt consumed with trying to make a good impression and getting people to like me. Even now, I sometimes spent too much time worrying about what other people think. To me, it’s a relief to be reminded that I am just a tiny part of it all. Gazing up at the night sky (or visualizing doing so) gives me renewed energy to pursue the things that are most important to me and to make the most of my time here and not worry so much about whether it’s significant to anyone else.