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?

Climbing Higher

 It’s been a really tough year—for all of us. It has been different than all other years before. In fact, for those of us not born this year, it might be one of the worst years. I’ve had some personal things happen this year, and then the coronavirus pandemic hit. That’s why I was half relieved, half disappointed when I found out I still had to get my shots this year.

These shots I have to get are not “normal”, twelve-year-old shots. The needle is filled with a medicine called Botox. It is made to loosen muscles. As far as I know it can loosen almost any muscle. Botox is used from a comestic standpoint as well as to treat muscular disorders such as cerebral palsy. I have gotten Botox since I was three years old. Back then, it was so painful that my dad had to hold me down across his  lap. I screamed and cried so much that one of the nurses around me started crying, too. 

I get Botox twice every year now, so while I am not used to it, per sé, I know what to expect. It still hurts, but because I get it so regularly, it represents normalcy. Almost no part of this year has been “normal” for me—and most likely, it hasn’t been normal for you, either. It might sound weird that I consider getting six shots in my legs twice a year “normal”, but I’ve never known otherwise. Some kids get shots just at their yearly checkups, if that; I don’t. I do get shots at those yearly checkups; I just don’t mind them. My point is, some of these normal things have made this year a little more tolerable. 

So now I am looser and ready to have an open mind. Who’d have thunk that botox would have affected me like that? That’s 2020. 

So let’s climb higher with our open minds. What are the things that challenge us? Why do those things affect us this way? Is there anything good about those things? What motivates us? 

Botox is one of my challenges. Getting looser is one of the things that motivates me. How about you?

Friendly Fire

 Sometimes—most likely—you’ll find friends that you really like. But sometimes, unfortunately, they won’t know when they are being hurtful.

This is what happened to me. Me, my sister, and two friends were playing a game. It was an athletic game, one where you needed leg strength—which I struggled with. We paired up to play the game, me with my sister, and my two other friends paired up.

“She wouldn’t be a good partner for that,” my friend—the one that I was closer to, actually—said with a glance at me. She then quickly added, “No offense.”

One, the words “no offense” don’t help after someone has said something hurtful. In fact, it might sting even more because afterwards when you might be angry or upset, your friend might either not understand or be defensive, claiming, “I said no offense.” Yeah, you did, but it offended me anyway.

What I learned is, if your friend just tends to say whatever pops into her head, eventually someone has to tell her to be careful with words. So, if it’s you who tells her, then 1) it is most likely someone she respects and 2) you might tell it to her more gently than someone else would.

But if your friend persistently makes insensitive comments even though you advised her not to, then she might not be your friend.  Secondly, if she hurts another one of your friends, then you might have to choose.  My friend that made insensitive comments is now only my acquaintance. But the friend she hurt is a true friend. I know how hard this is to accept. My experience was really challenging at the time, too. In the end, after two days where she did not speak to me, she apologized and things are okay now, but they really aren’t the same as before—like I said, she is now an acquaintance, as much as I hate what happened. 

So, if your friends are being insensitive, don’t wait to tell them that it hurts your feelings. I did wait, because I’m not the kind of person who likes conflict. But in the end, it wasn’t me who incited conflict—I told my friend how I felt, and in the end, she listened.

Rocky Road

 I had an MRI (Magic Radiation Imaging sounds better, doesn’t it?) for my hips because they have been hurting for 3 years now. Unfortunately, my doctor said it is probably chronic pain, which is bad, but I’ve learned it can always be worse. For instance, I have amazing, supportive friends who can sense when I’m in pain and help me through it. My parents and sister, of course, are awesome. My teachers are really nice and understanding. (Woohoo!) And strangely, I can sort of be grateful about PE this year. It isn’t easy—I didn’t expect it to be—but it is easier. My PE teacher is pretty nice, and the girls I’m in PE with aren’t mean like last year (thank goodness). Sure, I fall down a lot, but that’s okay.  I can count my blessings. School is better, and that makes pretty much everything better. 

My Chains

 I am bound

To this Earth

by my blessing

and my curse.

I am tied

by their teasing,

Chained by their

Stares.

My chains

are tugged

By my head,

Doubtful,

Scared.

My choices

Of the heart and mind

will set me free.

While

my

Visible chains

Are

My legs,

They are not

What keeps

Me From Being Braver.

I am

my obstacle

my personal 

barrier

I hope

To break

These chains.

Break

my doubt

Forgive others

and myself,

and set

myself

Free.

I will

not

Let these chains

Treat me like a puppet

Any longer.

I am free

Free

To be me 

without the chains

That imprison my heart.

Free

Of the chains’ control

At last

I am free.

I am

Proud

Capable 

Brave.

I won’t do this

To myself.

Not anymore.

God,

At last

I am free

Of my

Chains.