(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.

You’re the Reason

I love my life, when I get to live it. I love good food, trees, and all the different colors that the sky takes. I love spider webs and ants and flowers that grow in the cracks of cement. I love the sound of hearty laughter, telling people I love them, and seeing strangers smile. I love twirling in the rain and making wishes on dandelions and listening to a song for the first time.

But life is also hard. It can be excruciating, even in the happy moments. It’s overwhelming and exhausting trying to exist in a society that cares more about money and social status than about people themselves. It’s a drama that often shows as a tragedy, and I sometimes struggle to make it a heartwarming comedy. I love it, but it takes everything inside me to be able to love it.

I have been battling depression for my entire life. Sometimes it comes close to winning.

I don’t like admitting it. I HATE admitting it. I don’t want people to know. I don’t want people to worry, or pretend to. I don’t want people to see this, because what good will it do for them? How will it help others to know that sometimes I just don’t want to live?

Most of the time, I’m okay. It’s hard and I want to run away or hide or just sleep, but I also enjoy things. Most of the time it is that or better. But then there are the other times-

The times when everything I do seems to make things worse.
The times when I feel like a failure, unworthy of what I’ve been given.
The times when I feel like I contribute nothing positive to this world.
The times when I believe no one but my children would truly be affected if I disappeared.

They are rare, only in my most painful moments. When I was younger, I would write about how I’d end it. I’d play it out in my head. I’d hold the pill bottles or the knife in my hand and stare at them. But I’d only take a few, I’d only slice a little, I’d do just a tiny bit of damage, then go back to my hell. I fought for my life when others threatened it and I never truly attempted to take it myself. I don’t even tell myself I will anymore (even if I sometimes wish I could). I fought it all and I will continue to fight. I’m still here.

And you are the reason.

You who love me, whoever you may be.
You who still lean on me.
You who are gone, whose shared memories only live on within me.
You, whom I have not yet met, but who will become one of these people.

I cannot bear to hurt you.

So any time you see me, any time you are reminded of my existence, I hope you’ll smile to yourself a little. I hope you’ll understand how important you are. You, just by being in this world, are helping to save a life. Thank you. Thank you for being my reason.

Reflection

Last night, for the first time in years, I looked in the mirror and saw myself looking back.
Yeah, a little fatter, a little older, a little more exhausted, but the core of me is still here. That hasn’t changed.

And I’ve been thinking about the fact that I have been close to death more times than I can count. Each time left its own battle scar. I used to be so ashamed of these flaws, but now I wear my marks with pride.
I was there.
I fought through it.
And I’m still standing.

I’ve even been loved, by so many. Maybe it wasn’t always the way I wanted. Maybe I didn’t feel they could truly see me, but they saw something in me. Each of them knew that I was different. Each of them wanted that difference in their life. And maybe I couldn’t love them back, or maybe I didn’t have enough faith in them, or maybe I just didn’t have enough faith in myself, but some form of love was received. And I’m still loved, every single day.

And oh, how I’ve loved! Though.. often it wasn’t the way they wanted. It was misinterpreted, taken for granted, and manipulated. It was also cherished, obsessed over, and yearned for. Some didn’t know it existed, some didn’t know the depth, and some denied it completely. But still, I love so strongly, whether strangers, friends or foes.

I’ve been lonely, too. That’s the other side of love, you know. I release my heart into the wild and I’m left feeling like something’s missing. Some days have been worse than others, but I’ve learned to appreciate those the most. Those are the days when I put so much love into the world, silently, that my heart is a little sad to not see the results. That’s okay though, because I have too much to keep close to home, and I know that it’s out there, it matters, even if I will never know how. The loneliness has a beauty of its own, and I smile to feel it, even in this moment.

So, I’ll still try to lose the weight, the lines, the dark circles, but if I can’t, that’s alright. Because I’m still here, still true to myself. Yes, I’ll fall and consider staying down. I’ll lose my way, my faith, from time to time. I’ll wear noise cancelling headphones to avoid hearing the beat of my heart. I’ll do all of these things, as I have before, but they will never last. I’ll always come back to look myself in the eyes and tell myself that I’m still worth it. I’ll never stop. I’ve already lived and loved so much more than I ever thought I would, and I will continue to do so until my last breath is stolen from my body.

If you’re reading this, I hope you will do the same.

I love you.

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.

Just Do It!

Okay! I will!!!

…That’s what you want me to say, right?

FUCK.
YOU.

Seriously.

My illness/disabilities are not an excuse. I’m not being lazy. I don’t need self-discipline. I can’t just get up. I can’t just push myself. I can’t just get over it.

I DO NOT CHOOSE THIS!

Maybe you didn’t know me before. Maybe you thought you did, but really only knew of me.

I never wanted this.
Or any version of it.

Sleep? I hated sleep. I slept fine, but considered it a waste of time. The fact that it was required to live was the only reason I allowed it to happen.

I hated doing nothing. I wanted to go, do, create, LIVE. Adventure! The Unknown! The Unexplored! The Unexpected! Never stay still, never give in to the monotony, the emptiness.

I HATE THIS. With all that I am, I hate this. I hate that I cannot walk. I hate that I cannot go, do. I hate that I cannot even wake enough to explore through books. Life has become monotonous. I feel empty.

Fuck you. Fuck you and your ableism. Fuck your “encouragement” to try harder, when it takes every fucking drop of my strength and energy just to continue surviving. Fuck you for treating this like some personality trait, something I can change.

I WANT TO.

God, how I want to. If there was ANY way to have even half the ability I had before, I would drag my ass through hellfire to get there. I would literally give up an arm to be able to stand still longer than 10 minutes, or walk long enough to get through a grocery store without excruciating pain, or stay awake watching a movie without breaks, or use a ladder or stairs or bend down or look up without getting dizzy and nauseous.

And yes, I know you are not in my shoes and my health problems are not visible. I know you’re just ignorant and I should be secure enough to shrug off your comments. I know. And I try.

But every second of every day is pain. Physical, mental, and emotional agony. I feel an invisible weight threatening to crush me at any moment. My very soul is screaming, crying, trying to will the rest of me to move, do, be, live. Everything I try to do, every thing I’ve done a million times before, with ease, feels impossible. I push. I struggle, never giving up, finally finishing in hours what could have been done previously in ten minutes. I get so angry at myself for struggling. I get so furious at myself for not being what I was. And my heart breaks. It kills me that I cannot help others the way I used to. I cannot be the one they turn to when they are in need, because I am no good to anyone else if I am not okay. But I try anyway. I try to do everything. I try to be everything. And I end up making it worse. All of me is devoted to this, to just trying to get by.

And I don’t have anything left. Nothing to make me a person.

So I try to accept where I am now. I push though. I joke about it. I inform and I brush away the pity. I feed the spark of hope that I will find another way to be again. To do again. To live again.

And you

You come in with your bullshit mottos. Your judgemental phrases stolen from inspirational posters. Your fraudulent quotes attributed to idols of the past. You come to me with your “Don’t give up” and your “Push yourself” and your “Just do it” and try to extinguish that hope, tear up the plans, block the path to being the best version of who I can be now.

So

FUCK YOU.

Fuck you for trying to take from me what little I have managed since the world took so much.

Fuck you for trying to make me feel like a lesser person, instead of having lesser abilities.

Fuck you for thinking you have any right to give me any advice, when I would not trade places with you for anything.

Fuck you for spreading your hatred.

And the truth is, when all is said and done, I feel sorry for you. Because yes, you caused me bitterness for a moment, but I’m okay now. I am smiling, literally smiling as I type this conclusion. I love myself, I am proud of my strength, and I know I can and will take these struggles on again and again. I will continue to be good. To do good.

But you, you have to live with that poison coursing through your veins. You have to wallow in that flood of misery. You splash it at others, but they move on, dry off, forget that it even happened. You stay, hide in it, only peeking out to scan for more victims. You live in there, and if you don’t find a way, a reason to leave, you’ll die in there.

So I take them back. No “Fuck you”s. You don’t need them.

You’re already fucked.

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.