Glass

You’re the reason I have walls

Are you gonna care enough

To tear them down?

I’m broken on the inside

Had to turn my heart to stone so

You couldn’t get through

In the end,

Will you betray me….

If my emotions don’t 

betray me first

Had to seal myself off so I don’t get hurt.

In the end, you’re like everyone else 

You say you want to know me

But when you get deep inside

Will you just

back off and hide? 

When I start to trust you

Will you let me down again?

I saw love

I saw peace

In blue eyes once

My trust was theirs,

though they could

Shatter me like glass.

But something isn’t beautiful

Because it lasts.

You gotta prove yourself to me

Will you just be

One in the crowd?

Will I have to deal with

your mockery,

Shut off the pain of your laughs

If you really love me

You can shatter me like glass

But

Something isn’t beautiful

Because it lasts.

If I really trust you

Will you let me down again? 

Break my heart

with the pain of your laughs

Is it possible to love you

without splintering apart?

If I just broke

here and now

I’d be up above

Staring into blue

Blue skies,

Blue eyes

that love me so much.

I want them

To be with me.

I have you

Instead.

But something isn’t beautiful

Because it lasts

So prove yourself to me

Or shatter me like glass

I’ll lie to myself, say

I’m not hurt

Wonder how long

I’ll believe in that?

But something isn’t beautiful 

Because it lasts.

The Useless Helper

 Do you ever feel like you’re useless? Maybe you do. But you might not feel that way as frequently as I do. 

About five years ago—the summer before fourth grade—I woke up with horrible pain in my knees. It hurt to walk. When I was younger—say, four to nine years old or maybe even when I was a toddler; I don’t remember—I had hamstrings that were so tight it hurt all over my legs, my thighs especially. But it always went away by the next day. Worst case back then was that I took some Tylenol or ibuprofen and I got pain relief. This kind of pain was different. It was stabbing pain. My knees throbbed no matter what I was doing. My mom ended up calling my physical therapist after I complained of pain for two days straight. He said it was probably just a growth spurt.

Five years later—after at least six different medications, countless doctors, and an (inaccurate) diagnosis of fibromyalgia—here I am. The pain is manageable on some days, and nearly unbearable on others. The fact is, I don’t have the kind of time to sit around and nurse my aching hips. Or at least, I’m too stubborn to do that.

I am blessed with an understanding family who doesn’t pressure me to do things when I’m hurting. However, my pride kicks in. For example, I was helping out at my Nana’s garage sale and everyone was active, setting up folding tables, carrying boxes to different tables, and generally rearranging things. For the first thirty minutes of this, I was active, too, helping to organize the table that my sister and I were selling our stuff at. After that time, though, I was exhausted—and really, really frustrated. Most kids my age can run for a long time without getting super tired, much less move some things around at a garage sale. 

I was the first to sit down on a lawn chair, guzzling from a water bottle, grateful that my exhausted, aching feet were getting a break. Then I looked around at my family members, who were all scurrying around, effortlessly (at least, that’s what it seemed like) carrying boxes and things like that—all physical things that required legs that were “fully charged”, aka not super tired like mine were.

I felt so useless sitting in that chair. I was angry and I resented that my legs couldn’t cooperate for what I considered simple activities—especially since I had taken my medicine that morning, which admittedly, I’m not always so great about. I also resented that I didn’t get to experience a so-called “normal” childhood. As much as I hate that word—“normal”—I do feel like it has a point. But mostly, I was frustrated because the rest of my family seemed to not even get tired as they helped, while I probably sat in that lawn chair for longer than I had helped! It was annoying. 

Not to mention that it happened again! I was cleaning out my grandpa’s thousands of CDs (literally I have never seen that many CDs in all my life!) and putting them in boxes. There were so many that I maybe was boxing for an hour. I’m not complaining here, because I really like to help my family. I’m just saying there were tons! I was getting tired because the CDs were on a high shelf, which meant I had to stand up as I reached for them to put them in a box. My legs were shaking, which they do when they’re tired. (I have learned to read the signs.) My sister noticed and told me to go sit down; she would finish packing my grandpa’s CDs. It was a sweet offer, it really was. But I got mad (not really at her, but at my legs), and told her I was fine. I was not trying to be dishonest. I was trying to save my pride, which was a bit bruised though my sister had offered in the sweetest way possible. I just wished I could complete a chore without my legs giving out. Is that too much to ask? If I sound bitter, I’m sorry. I know how fortunate I am. I just get exasperated because I feel like I’m useless—no matter how many times my family tells me I’m not.

Reflection

 When you look in the mirror…. what do you see?

Some answers to this might be your hair, long or short, your height, tall or short, or maybe your eyes, whether you think they’re an interesting color or big, whatever the reason. Each of us see different things when we look in the mirror. Do we see what we consider our “flaws” or the features that we are proud of?

This past weekend, I was out shopping for clothes when I passed by a large mirror. I stopped, a bit in surprise and a little self-consciously. I had noticed my legs and the way they twisted when I walked.

Believe me, I was not surprised that my feet were turned in. I’m aware that I walk like that usually, except for when I’m unusually loose or if I’m thinking about my feet. But for some reason, on this particular shopping trip, it hit me that this is how people might see me. A dorky-looking (which I’m not ashamed of) little girl with twisted-in feet. To be clear, this is not something to be ashamed of. I have a disability, a difference, and that is perfectly okay! All I’m saying is that right then I felt a little self-conscious and a little too aware of how I might have been perceived. 

This might have bothered me for two reasons—one, because I work hard at physical therapy—until I’m exhausted, even—but as we all know, hard work doesn’t always lead to perfection. I am unbelievably appreciative of my circumstances, but at the store looking in that mirror I was a little depressed that my hard work hadn’t paid off quite as much as I had wanted it to. I know I am going to have to work hard, and I accept that. But I was bothered anyway.

The second reason that I was bothered is because I frequently make the mistake that a mirror is an accurate perception of what others see. This is not true. Mirrors cannot show our hardships and our struggles, our triumphs or our joys or our personalities, or our defining attributes. A mirror can only show what’s on the outside, and maybe not even an accurate depiction of that. The thing is, sometimes when we look in mirrors, we only see what we think of as our flaws.

“Oh, is my hair messed up?”

“Ugh, my face looks weird.”

But mirrors can also show the features that we like—whether you have “perfect” lips or sparkling eyes or whatever else. 

So do you choose to focus on the good or the bad? Because here’s the thing—because mirrors can only show what’s on the outside, mirrors are actually very limited if you think of it that way. And if others choose to see only what’s on the outside of a person—not their personalities or passions—then those people are pretty limited, too.

If people choose to “see” me based on my legs, then that is their choice and their problem. And they really don’t see me at all. They don’t see all I’ve gone through. They don’t see my accomplishments or my sorrows. The only thing they see—or choose to see—is legs and feet that turn in a little. Wow. What a limited view.

So how do you see yourself? 

The next time you need to reflect on yourself, don’t look in a mirror! No matter how much we all rely on it, a mirror can only show us so much!

Why I Love Fireworks (And Why I Don’t)

 

Happy July 4th!! Happy birthday, America! In honor of the holiday, you may have celebrated. Maybe that included a barbecue or brunch with family. Maybe you watched movies. Most likely, you also either purchased or saw fireworks. 

Fireworks are big and beautiful and sparkly. They go off with a boom that signals you that a firework is coming. No big deal, right? Just a signature sound. If you think that, your experience is oh-so-different than mine. As a person with SPD (sensory processing disorder), that sound is not far off from torture. I think my dog and I are in total agreement. (He hates fireworks.) Fireworks are so pretty, but without headphones, the noise would make me cower and hold my ear closed with my finger and/or shoulder. I love the fireworks, but I can only sit outside and watch for a few minutes before the sound overwhelms me—sometimes even with headphones on. I always feel like I’m spoiling the fun when I say I’m ready to go inside. 

To solve this problem, my family gets sparklers that don’t make any sound. They’re pretty and they don’t make noise. But when the sparkler lights on fire and makes a flash, I guess I either expect it to make noise or burn my hands. (I almost burned my shirt once.) In spite of my sensory problems, I enjoy waving sparklers around my backyard and celebrating the Fourth of July.

The birth of America is really special, and there are different ways to celebrate it. Maybe fireworks aren’t for me, but that’s okay. There are plenty of things that I can do to celebrate.

Making the Best of It

 You can’t wait until life isn’t hard anymore before you decide to be happy.

—Jane Marczweski

I heard this quote recently and thought about what it means. The quotee had gone through some hard times in her life and had had cancer up to three times, but was so tenacious that she did not let her obstacles discourage her. I think this can apply to people with disabilities as well as people with terminal illnesses. Some of us don’t have the time to wait to be happy, and some of our circumstances don’t get better quickly—they might be chronic. This is also called making the best of things, and it can be hard. I admittedly don’t do a good job of it all the time. Sometimes I feel like I have the right to sulk and pout until my pain just magically goes away, but the logical part of me knows that this is a waste of time. I don’t want to spend my life miserable because I’m in pain (although some days I do feel pretty bad). I think it is okay to acknowledge that circumstances are sometimes pretty unfair. Take some time to cry, yell, ask yourself why? but after that, try to ask yourself, How can I go forward? How can I be happiest, even through this difficult situation? 

I’m not saying to go through life being really active if it hurts you badly. I’m not saying to ignore your pain. I’m saying that it is good to find something you enjoy doing to help you not be entirely miserable—maybe (hopefully) even to be happy. 

Unfortunately, time runs out faster than we want it to. If you refuse to do anything because of your situation, you are letting it win. Of course, this is not always true. Some conditions can cause people to be bedridden or it is advised to be inactive. In that case, you are definitely not letting your condition win; you are doing what is best for yourself. Always do what is best for you! 

My point is that going through life depressed or sad is understandable. But some things aren’t going to get better, as much as we would wish them to improve. If this is the case, we might have to learn how we can function and enjoy life, even with our challenges. 

My Milestone

 Recently I got the news that I don’t need my braces—also known as AFOs (ankle foot orthotics)—anymore. I was ecstatic. I have had to wear AFOs since I was a little less than three years old. (I am almost thirteen now, so that’s a long time.) My AFOs helped me a lot, but to me they kind of got to be a visual representation of some baggage. That was probably because they were the main cause of  almost all of the comments, stares, and teasing of my childhood up to now. And that made me resent my AFOs. Do you know how hard—not to mention pointless—it is to resent something that you have to use day after day? The braces were uncomfortable and restricting. Every time I looked at them, I saw two things: (1) what I considered my limitations and (2) all the negative comments day after day. I felt helpless because as much as I hated my AFOs, I had to wear them at least five days a week. I know that situation is definitely not the worst and I’m sorry to sound ungrateful, but to a three- to nine-year-old kid, they are torture. The best I can say is that they sort of provided a bonding experience for me and my parents. One of them would take me to get the mold done and sit with me for the time it took to harden. They were also usually—until I got older—a favorable alternative to Botox, injections that loosen me up. I can remember a funny time with braces. My sister and I are twins, so in third grade we decided to switch places for the morning. It was so funny to watch her march around in braces! She frequently complained of how stiff they were, and she only had to wear them for one morning! 

There are some things I know my mom and dad won’t miss—when I was little, crying over having to wear them; when I was older, complaining about having to wear them; and one of my parents having to cram my big feet into my braces every morning. 

Now when I go someplace I don’t have to worry about people judging me as a girl who can’t run, or a girl who something is wrong with. I feel like my AFOs were all that people saw sometimes. Now I can be the girl who, yes, has a bit of a funny walk, but now hopefully people realize I am so much more than that. I know it is only insensitive people who judhe based on appearance, but I do not like knowing that anyone has a bad opinion of me, which is a weakness of mine. (It is definitely not bad to have or wear AFOs or anything but I do get tired of people staring.)

Mostly, I am appreciative that I got to wear something that helped me. When I complain about them, I am not seeing the bigger picture, and I know that. My AFOs were the best thing for me at the time. I am grateful to my parents for having my best interest at heart and for putting up with my complaints. (I’m sure I was quite a pill at times.)  My PT (physical therapist) has been with me since I was 14 months old and knows me very well. Thanks to him for many things but especially for helping me manage with AFOs. 

Getting my AFOS off was kind of like a mountain for me to climb. It was hard, yes. It was a challenge. But it was better for me, not only from a physical aspect, but also in terms of what I could handle. And yes, wearing braces, again, is definitely not nearly as bad as some other situations out there. But for me, it was difficult. It was one of my childhood milestones. And it may not have been a “normal”  milestone (what is normal, anyway?) like losing your baby teeth or turning a certain age, but to me, the milestone of getting my AFOs was special and every bit as much of a milestone as the usual childhood milestones. 

Break Me

 I try so hard

Is it ever

Enough?

I will

Not break in front of you

I try to tell myself...

I am

Unshakable 

Unbreakable!

But am I 

Enough

When I shatter

Inside

Their comments

Are like a sharp

Knife

Piecing me apart

One by one

Hurting me, tearing me

but I

am the only one who knows.

An intake of breath

A silent

Reminder

My head stops

Pounding

and I am me

again.

Torn by the whispers,

Broken by the stares,

I

Am not

Myself.

Letting them 

Make me

A follower

I am a leader

My own thoughts 

My own standards

Separate from theirs

I refuse to shatter.

I will not break

They can

Taunt me

Tease me

They can

Cut me

With their laughs

I am stronger.

My heart may break

My mind may clash

But I will remain

Myself.

Who else

Could I be?