(Dis)Ability

I wanted to tell you about my pain,
But I deleted it.
I wanted you to understand the invisible struggles.
I wanted you to see me.

But what can I say? What can I do to make it click?
Facts? Memes? An outpouring of emotion?
Shall I cry, scream, beg?
Shall I draw it, write it, sing it for you?
How do I make you see
This invisible disease?

If I could let you feel it…

For only a moment…

I wouldn’t.

So I’ll keep wearing my smile to hide gritted teeth.
I’ll continue to laugh to keep from screaming.
I’ll watch heartfelt shows, so I can live and love
Vicariously.

While grieving my potential.

While mourning the person
I used to be.

But don’t worry, because I still notice the ocean,
The flowers and the trees,
I still breathe in Autumn air, feel the Spring showers,
And watch Winter’s snow.
Though Summer may make me
Immobile and weak,
I still watch children playing,
With a smile.
I cherish these moments,
Knowing I may not be present
For the next.

I’m Sorry.

I’m sorry I’m not back yet – back to being attentive, happy, myself. I know this is temporary, but it feels a lot less temporary with every passing day. I just want to be past it. I want to pull myself out of this.

But it’s a lot, you know?

We don’t all have best friends to stand by us. Some of us are alone in this. Some of us are taking it all on ourselves, then just when we think we can’t take anymore, twice as much is thrust upon us. It’s all we can do, to bear the weight.

So please, appreciate the people who you can turn to with anything. It’s okay if you can’t return the favor – you can’t be everything to everyone – but make sure you’re not taking them for granted.

Survival isn’t easy when you’re alone in the world.

And when you get the chance, love. Honest love can get you through anything, you just have to believe in it. Don’t fear commitment or getting hurt. Let’s face it, life is painful anyway and committing to the hope for something more is never a mistake. Don’t ever settle for someone who makes life harder, but don’t let fear keep you from being with someone who makes you happy.

Life is just too damn short.

Numb?

Ever since I was young, I had a switch that I could flip in case of emergency. This switch took emotion out of the situation. No matter how much worse things became, I didn’t feel it. I was detached, cold, numb. This allowed me to do whatever was needed, in order to survive. Those who knew me well, could tell I was not myself. I faked it well for those who did not.

At 16, this detached version of me received a name: Roxy Jones. Roxy was seen as mysterious, intriguing. She was daring, as she felt no fear. She also felt nothing for those who grew infatuated, so it was common to see a trail of heartbreak behind her.

While this emotionless state was definitely useful, it also had its consequences. Without heart involved, it was easy to dismiss others. This could include ignoring them for any length of time, bluntly expressing indifference, and/or cutting ties with no explanation. Any action that best suited the current needs was quickly taken, without regard for others or even my own future emotions.

She smiled, but there was no warmth. She fought with unmatched strength and determination. She had a goal and would attain it, no matter the cost.

It could also become extremely difficult to come back from. Though it was known what emotion should be felt at any given moment, it was not quite felt. Using music and other passions, there would be constant attempts to summon true emotion. Usually these methods would at least cause a wanting for emotion. Eventually, something would get through to me and I would slowly come back to Life.

She saw the world as it was; a list of necessities and rules for gaining them. In memories, feelings were seen only as insignificant details. She knew, however, that I was still within her; watching, readying myself for my return. It was her duty to protect me, but she knew I would never lie dormant for long. Even when she resisted, attempted to suppress me, a loved one would reach me and I would pull myself out.

The most recent time this switch was flipped, it was more desperately needed than ever, more control was given over, and it lasted longer. Without the support of another, I alone had to bring myself back to Life. The struggle was lengthy and felt impossible, but I refused to be defeated.

She reminded me that I was alone. She reminded me that the world was painful. She made me wonder if I could make it on my own. I met each of her negative reminders with one of beauty. The joy was enough motivation. The passion for Life was still within me.

A few days ago, the world began to bury me once again. This time, I decided, I would be prepared. I asked my dearest friend to contact me after some time, to help inspire my return. I informed others that I would be absent for a while, to limit contact and so prevent negative social consequences. Then, I stepped back, relinquished control.

Only… This feels different. I have distanced myself, but do not feel truly disconnected. I cannot detach. I still possess control. Emotions, though quieter, are still felt. Others’ are still considered.

She’s gone. She’s really gone. It’s all on me now.

From now on, I’ll have to fight for myself.

Silence

I’ve not had much to say as of late. I have mostly been searching through the silence. I had surrounded myself with noise for so long, so I’d not have to see what lies in front of me.

I am reducing the clutter, so I can see what is important. It is not easy… I have held on to these for so long, it is difficult to accept that none of this amounted to anything. I know, though, that it is all weighing me down. How much more will I give to something that is never to be?

It is time.

It is time to make room for something real.

It is time to embrace the silence, so I can welcome something meaningful.

And I wish for help, someone to hold me accountable. I wish for caring sternness, so I will not falter. I know that I cannot have this, not yet. I must find all within before I can find it without. This knowledge is accompanied by fear, guilt, and overwhelming self doubt. Even so, I will fight on.

I may fail. I will fail. That will not stop me. As long as I can find the silence, I still have hope.

One day, I will not be alone in the silence. On that day, I will finally win.

Words.

I am disabled.

Disabled. It sounds so ugly. We are labeled this because we can’t do some things. No one can do all the things, but we get the stigma. We can blame “ableists” or whoever, but it’s on us, too.

I am uncomfortable saying I’m disabled. I have millions of negative thoughts flashing through my brain, telling me I shouldn’t. I don’t even want to admit it to myself. I am not the same as I used to be. I push myself to try to be, only making it worse.

I apologize. Constantly.

“I’m sorry I wasn’t there!” “I’m sorry I can’t make it!” “I’m sorry I’ve been so quiet.” “I’m sorry I haven’t reached out.” “I’m sorry I haven’t done it yet.” “I’m sorry I suck lately.”

FUCK THAT!

And the need to justify everything… the “I’ve been so busy.” “I’ve been in so much pain.”
Then justifying the justifications: “I had to do 8 ___, 3 ___, ___, ___, ___, ___, and ____, all while feeling like ____.”

NO!

This is ridiculous. I always do what I can. I’m kind. I’m supportive.

I’m a person.

I shouldn’t have to describe my struggles as a way of explaining why I’m not perfect. I shouldn’t feel guilty.

And that’s all me. I choose to justify. I make myself feel “less than.” I think about a future relationship and feel like I should come with an “As Is” tag. And it sucks. It hurts. But no one can change it but me.

According to my records, I am “disabled.”
However, it’s my decision whether I label myself, whether I justify, whether I apologize. People will see me how they see me, and I cannot choose how that will be, but I can choose how I see and present myself.

So, HI!
I’m me. I go by many names, but you can call me Duck. I do awesome things and can’t do some “normal” things. I am a mess, and I love who I am. I also love you, whoever you are. Genuinely.

And I am NOT apologizing for that.

Another Confession

First, some background on me:

I love new experiences, good and bad. They remind me that I’m alive. Life is short and I want to feel as much of it as possible.

I also love a challenge. I like to test my limits and see just how capable I am. I’ve never experienced anything I couldn’t handle, even if I didn’t believe I could at the time.

I have never broken a bone. I have never been shot. I have never been stabbed (except twice by myself, accidentally, and it wasn’t serious).

People have always thought I was crazy for wanting to experience these things. They couldn’t even put into words why it is so bad to want this, but were very sure it was. So I explained to them that I like new experiences, blahblahblah, and they kind of understood.

And that was all true… but I didn’t tell them everything.

The times when I thought about it most was when times were toughest.

Automatically, one would assume I had a death wish or was a masochist, but that had nothing to do with it. I never enjoyed pain. I never wanted the occurrence to kill me, or even permanently injure me.

But physical pain is easier to handle than mental pain. So when everything was falling down around me and I felt myself getting buried, I needed something to take my focus for a while, something to allow me to reset. It had to be serious, it had to be intense, or it would be ignored.

In retrospect, this is probably why I would jump into relationships. Wrong or right, they were always intense.

So a broken leg, a bullet in my arm, or chip of blade stuck in a bone would be a relief. Yes, it would suck, but it would release me from other stress. It would be something that I could see, touch, control. It would allow me to temporarily set down some of my burdens, give me a chance to make a plan and strengthen myself before I took them back on.

“A break to keep from breaking.”

Yeah, I was never talking about a vacation.

***

LOL: So now, stress can lead to serious Fibro flares. Pain is there 24/7, but during flares, I can’t do anything. Sometimes I can’t even hold my phone.

Guess this is a case of “Be careful what you wish for.” 😂

***

I’m Still Here

A strange thought occurred to me tonight: I’ll probably live to see my boys become men.

What a crazy idea. Life keeps moving, I keep waking up, and every day my boys are a day older.

I have already lived 20 years longer than I ever thought I would.

My story is not a simple one. The main plot moves slowly, yet every page brings new conflict. There are many twists and turns. Some chapters exist only for character growth. Sometimes it gets confusing. Sometimes I have to stop, close my eyes, and try to forget it exists for a little while.

But it does exist. 20 years ago, it was expected to stop, but it is still going.

I am still here.

I get so lost in the drama that I forget… This is all just bonus.

I

AM

ALIVE

And I am so glad that I’ll be here to see what life has in store for me next.

Disconnected

Sometimes I feel so separate from my life. I won’t say I feel numb, more… empty. And I could easily blame it on my illnesses, my disabilities, but in truth, it’s unrelated.

Is it self-defense? Is it exhaustion? Is it weakness or strength? These things I often wonder, but can never answer. It happens when I feel stuck. It helps and it hurts. I’m pretty good at going through the motions and letting autopilot take control, but it’s only a form of living death. I suppose it’s my way of escaping, taking a break to keep from breaking.

In the past, there was another personality who took over. She was strong, but mischievous. Her behavior was risky and many of her actions could have set my life on a much more negative path… that is, if she wasn’t so damn charismatic.
I admired her, in a way. She was what I couldn’t be. She was mysterious, dangerous, and sometimes cold. But she cared for me. She let me rest inside to curl up and cry it out, while she tantalized others with her devilish grin. When I was ready, I would return and she would go back to the shadows.

She was my protector.

But I’ve always refused to have a crutch, so she had to be released back into the ether.

And now I’m alone, with no one to be my facade.

So I’m trying to find my way back. I have moments, but I can’t bring myself to stay. Though it’s rarely worth the energy, I can fake it when I need to. My heart isn’t in it, however. Perhaps it’s been misplaced.

I’ll find it, though.

I’ll come back.

I always do.

Getting Up.

People who have had less traumatic lives, love to call me resilient. “You persevere,” “you never give up,” “you never let it beat you.”

I have no choice.

And beside that, I do let it take me down sometimes. How many times in life have I let something bad happen, because it was easier to fix the result than to fight off the event? Too many to count. Too many to even remember. Does that make me a lesser being? No, it just makes me real.

I am not proud of my weaknesses. I am also not going to deny them. I’m not going to pretend that I will magically be able to stop them. All I can really say is that I’m trying to get better. Honestly, what more can you ask of anyone?

So today, I made important calls. I filled out important paperwork. I sent an important email. I know it’s nothing, but it’s also not nothing. Each task was a struggle. Some actions created more tasks for my ever-growing list. It can be extremely overwhelming and all I want is a break, but even my breaks are not really breaks, because I just sit and stress and feel inadequate and get angry and tear myself down until I am nothing but a mushy lump of waste. Getting knocked down is pretty tough on a person who literally has difficulty getting up.

But today, I did get up.

Hopefully I will be able to push myself to do the same tomorrow.

At some point, I’ll stay down for a little while, overwhelmed and self-sabotaging… but as long as I’m trying, I will always eventually pull myself back up.

Hell yeah, I’m resilient.

We all are.

The Spider

Today I was entranced by a spider. This spider had something unwanted in its web and was struggling so hard to pull it out. The spider would use its legs to detach strands of web, then brace itself against the wall and pull, pull. When it didn’t come loose, it would repeat the process. Over and over, I watched this.

I wanted so badly to help. I could have easily stood up, walked over, and removed the unwanted item. However, doing so would have ruined the web that this spider had worked so hard for. Who was I to do so?

And then I realized that the spider was me and the idiot “helping” was the majority of my relationships.

How many times has this happened? How many times have I struggled so hard, then allowed someone to “help,” only to lose everything I’d worked for? How many times have I had to start over because I let this happen?

Too many.

So I watched the spider work. Determined, the spider repeated the process over and over and over again. The spider did not give up. It did not falter. It knew what it wanted and maybe that wasn’t the fastest way to go about it, but it was the way it wanted.

I had to leave, so I didn’t get to see how long it took. I didn’t get to share in the victory. That’s okay, though, I’m sure it’s all the same to that spider.

I would have liked to be able to communicate and offer assistance in line with the spider’s plans.

And that’s it right there. That’s what I need. I don’t need someone to do things for me. I don’t need judgment. I just need someone to ask, “what can I do to help you?”