(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.

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.” 😂

***

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?”

My Birthday is in 2 Days

and I don’t want it. Because what’s the point?

What makes me so fucking upset is that I was going to help people. I was going to be great. Lives would have been changed for the better. I was on this path, I was doing well, and then

fuck me.

Because never in my life have I gotten a break. And all I want is to do good, but Life just fucking kicks me. And yeah, I get up, but I never make it far. I never get to be someone. I never get to help people. I never get to inspire. I’m just in the background, struggling to give people a reason to care.

Fibromyalgia. Narcolepsy. Restrictive Lung Disease. Anemia. Vertigo. Kidney issues. I start feeling stronger and plan to do something, anything, and then they hit hard and I can do nothing.

I can’t even save my cat, the one who has been there for me for years, helping me with my illnesses… Now he’s ill, needs surgery, and I’m failing him, because I am not enough.

I would have been great. Now I am nothing.

Happy birthday to me.

Dear Life,

We need to talk. The way things are… it’s just not working out.

I try to take a break to clear my head and you come back with more intensity than ever, which makes me distant again, which makes you intense, and on and on…

I can’t do this anymore.

I’m not saying I want to give up. Despite what I may say in the heat of the moment, I truly love you. I do. I wouldn’t trade you in for all the money and success in the world.

But this is getting way too hard. Something needs to change.

I’m not trying to throw blame. We’re in this together. All I can say is what I need from you, and what I can offer in return.

So here it is.

I need you to lighten my load a bit. I feel overwhelmed as things are, and it’s difficult to want to hold everything together when I can’t take it anywhere. I need to be able to move forward, and I just don’t think I can when everything is so heavy.

In return, I promise to be more present, the way I used to be. I’ll appreciate you more, and the journey we’re on together, even when it’s a bit rocky. I’ll stop looking behind me with a sore heart, and only look back with clear eyes and mind, learning from our traveled path in order to aid in the road ahead.

I will smile more and sing again.

Can we do this? Can we agree to stop making things harder on each other and make our walk a great deal lighter?

I want to continue this journey with you for as long as possible. Please help me make this happen.

With Love,

Ducky.

When I Grow Up

When I was a little girl, I wanted to be a singer. After hearing a recording of myself, I realized that was never going to happen. It didn’t feel like a huge loss, though, because I had felt the stirrings of another dream.

I needed to be a teacher.

I vividly remember needing help with homework one night, sometime around third grade. I knew my answer was wrong, but I couldn’t figure out what I’d done wrong. I asked my father for help, but had to teach him how to do it. In doing so, I realized my own mistake.

For as long as I can remember, I have been helping kids – with homework, real-life problems, anything I could. Younger, older, even adults. I wasn’t allowed out of the house, but I would sneak out anyway to help the neighborhood kids. I wanted that to be my life. I know that my teachers changed my life, I wanted to be that for others. I wanted kids to know they had someone they could trust. I always had a give for teaching others, usually by showing them a different way to look at the problem. I wanted to use that gift to do good. I knew I could do it.

I was on track for this when my health worsened. I started passing out during my studies. I became absent-minded. I was often in too much pain to concentrate, let alone actually sit in a chair for any length of time. School wasn’t possible anymore.

And even if I had my degree already, how could I be a teacher? I imagine standing in front of a class when my legs give out. Or handing out tests and my arms stop working. Or passing out during a presentation. Or feeling that pins-and-needles burning skin sensation while doing, well, anything. How could I be of any use to students?

So that dream is gone. It hurts. Every day, it hurts. It hurts more when I see kids struggling. When I see adults who never had that teacher who helped shape them. When I hear people talk about how “teachers don’t care anymore.”

I wanted to be there.

But here I am. I’ve been in bed all day, because of heat sickness. I’m writing in a blog that no one reads. I don’t even want people to read it, I just want to pretend I do, because I want them to care, I want my words put out there, but I don’t want anyone to see what is happening here. I don’t want them to see my pain. There’s enough pain in the world, I don’t need to expose anyone to mine.

And I don’t want them to see how much of a failure I really am.

I had so much potential, and the passion to make it work.

Now I am left with only the passion, and all it does is hurt.

…

I just want to find a way to put it all to use again.

Getting Through

What do you do when you’re 32, your body is broken down, and you feel like you’re still waiting for your life to begin?

Don’t get me wrong, these 32 years have not been boring. Pick any subject and I’ll have a related experience to talk about. But I feel like everything that’s happened so far, has happened to me.

When does my life begin?

You know, the one in which I get to make choices. The one in which I get to follow passions, dreams. The one in which I get to be… me. The real me, who I catch glances of here and there, but who gets lost in all the clutter – the clutter of society, and expectations, and rules, and responsibilities, and disability, and anxiety, and AAAAAAAGHH!!!!!

“Do.” “Act.” “Today’s the day.” “Carpe Diem.” “Don’t let things hold you back.”
Fuck these people with their inspirational quotes. Fuck these silver spoon-sucking ignoramuses who pat themselves on the back for “enlightening” those they tread upon. Fuck the outpourings of positivity that comes from never being forced to realize that some things are, in fact, impossible. There are some of us stumbling in the darkness of truth, and this bullshit just creates more infuriating clutter.

But I’m okay, I’m okay, I’m okay. Everything’s fine, just fine. Nothing I can’t handle, nothing I can’t get through.

BUT I DON’T WANT TO JUST “GET THROUGH” ANYMORE.

I

WANT

TO FUCKING

LIVE.

Maybe Someday…