The Chronic Pain of Chronic Pain

The Chronic Pain of Chronic Pain

“Push”
The push away
The tension
Cries
The in between
Disconnected lives

To carry on
Can be no more
The hurt
The pain
The days we mourn

What once lived here
We can no more pretend
Pushed too far
This is the end.

The most difficult thing to explain to non disabled people is chronic pain. It comes and goes without rhyme or reason. Sure, sometimes, experience dictates you might feel worse after engaging in activity but you never really know.

My life, never really one of feeling good in recent years, has been in a more extreme downswing over the last few months. Hence, my lack of blogs here.

…The one little thing I do as I can that makes me feel like I’m an active participant in the world… I can’t do. I just haven’t been physically or mentally able to keep going.

I hope that changes, it likely will improve a little eventually, and then revert back the other direction. That’s chronic pain. You just don’t know.

It’s exhausting on every level.

Sometimes, just to avoid giving up, you do things anyway although, again, it’s sort of a one shot deal knowing more pain is coming.

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Image description: Man with glasses, beard, blue hoodie, red shorts and gloves seated in a wheelchair. Woman with red hair, glasses, gray and white shirt, and jeans standing. Between them, team mascot standing; a brown dog with tongue sticking out and red shirt.

Last night, my wife and I went to a local minor league playoff baseball game – Awesome.

Today, I’m dealing with higher than normal (even by my standards) back and leg pain as a result – Not Awesome.

I’d love to get more sleep. About four hours a night is my average since my knee replacement in 2015. Last night was a little less and, frankly, I’m struggling.

At least we won the game

This is my life with chronic pain. I hope to write more soon.

Wherever you are this day, remember, Love Accepts You No Exceptions.

I’ll try to remember those words apply to me too.

Peace Love and Acceptance

Still Tired…

Still Tired…

There are so many things to talk about.

Disability inclusion/exclusion.

The Amazon.

The Evangelical Church selling its soul in what I suspect is some kind of plot to hasten the end times.

Poor theology in general.

Yet, here I am, and I’m tired. 

It could be the sleepless nights I continue to endure over and over again.

It could be the constant fight against privilege and lack of understanding.

It’s likely both these things and more.

I’m so tired. 

If you’re tired too, you’re not alone.

If you want to talk about being tired, any of the previously mentioned subjects, or anything else, please comment. I welcome the conversation and the opportunity to both give and receive support. 

Wherever you are this day: Love Accepts You No Exceptions.

Peace Love and Acceptance

 

 

Tormented by Sleep

Tormented by Sleep

“Tormented by Sleep”
Tormented by sleep
As hours tick by
Tormented by sleep
Let out a sigh

Pain is too great
Long to be free
Tormented by sleep
Gaslighting me

Available remedies
None presenting peace
Long for my release
Nightly enemy

Tormented by sleep
Day after day
Tormented by sleep
Take me away.

alone bed bedroom blur
Photo by Pixabay on Pexels.com Image Description: Person flat on stomach in bed. Covered completely by a sheet except feet sticking out.

There’s a lot going on in our world. I hoped to talk about some of it today. However, my body is not cooperating.

Disability is like that. You never know how you will feel.

Today, like many days, I feel bad. This is just part of my story.

All I have today is a poem inspired by near nightly painsomnia but I’m sharing because, if you are struggling with pain of any sort, I want you to know you aren’t alone.

That’s part of my story too.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

 

Why I Won’t Agree to Disagree But I Will Try to Listen

Why I Won’t Agree to Disagree But I Will Try to Listen

I hear a lot today about agreeing to disagree.

You know, “I see it this way. You see it that way. We’ll just agree to disagree.”

Sorry, I can’t do that. 

As my friend and great social-minded theologian, Samuel Mudge said recently,

“Agreeing to disagree doesn’t work for a whole lot of people because sometimes, two people are discussing something that is an abstract idea to one, and life-and-death to the other.”

Think about that for a second. I’ll use my most personal examples for clarity.

Not having access to plastic straws might kill me.

Doing away with healthcare protections might kill me.

Using mental health or other disabilities as your excuse because you don’t want to talk about guns or other issues might kill me.

That’s how it works.

The same is true when you endorse leaders who overtly or covertly use their power and systems as a means of oppression, exclusion, and hate.

They aren’t all created equal. People are dying! 

I will say this. We do need to listen to each other more.

I do believe most of us are not as far apart as it seems. Outside the top few, the people from the middle down are all being squeezed economically and otherwise.

Let’s work together to answer these more difficult questions. Maybe life isn’t supposed to be completely found in easy answers.

agree agreement ankreuzen arrangement
Photo by Pixabay on Pexels.com

We’ve lost our ability to sit across from each other; to hear each other, and to listen to our individual and collective pain. 

This isn’t a suggestion of mere tolerance. I’ll fight as long as I can against racism, ableism, and any other form of oppression, exclusion, and hate.

Inclusion is a table of equity and justice especially for people on the margins. 

That’s what Jesus’ ministry is all about. He restored people to equitable, just community.

This isn’t an over-simplified version of love the sinner, hate the sin. 

That’s just a slight modification of agreeing to disagree with a dash of power mixed in. That’s what got us here.

It’s just a reminder to listen because the cycle will never stop if we don’t do better. 

I hope you’ll join me.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

 

 

 

Are You Hiding Behind Your Smile?

Are You Hiding Behind Your Smile?

“My Sanguine Shell”
Sanguine
Shell
Fake

Pain
Anxiety
Depression
Regression

Rudderless Ship
Assailed by Stormy Seas
Wave Battered
Sinking
No Release

SOS
Drowned
As Smiles Abound.

 

photo of thunderstorm
Photo by Rodrigo Souza on Pexels.com

“And I tell you that you are Peter, and on this rock I will build my church, and the gates of Hades will not overcome it.”Matthew 16:18

Do you ever wonder if others can really see you; not just what’s on the surface but underneath? It probably doesn’t happen most of the time. We’ve become good hiders.

That’s what I love about the dynamics between Jesus and his disciple, Peter.

Peter gets it wrong as much as right. He sinks in water instead of focusing on Jesus. He goes around chopping off ears. Still, Jesus sees and loves him. He sees the possibilities behind the fearful surface Peter exudes.

That’s the heart of God. It does the same for us. It strips away all the coverings of brokenness and finds the good underneath. Yet, I still wrestle with this.

I know God can see me completely, but I still cover it up. Talk about hubris.

I hide my true self from others too. Vulnerability is scary. They won’t accept me if they know my weaknesses.

Except, we all have weaknesses. Some of us might be better at hiding them but we all have weaknesses, fears, insecurities, and shortcomings. So, what if we didn’t hide them?

Maybe we’d all be better off if we were a little more honest with ourselves and each other. Maybe, we could engage in meaningful conversation and begin to break through all our divisions.

I don’t think it’s easy. Being vulnerable might be more difficult for us than building equitable systems and relationships and, frankly, we are pretty bad at both these things.

However, since I have to start somewhere. Maybe this change starts with me.

I hope you’ll join me in building coalitions of love, justice, vulnerability, and equity. In doing so I believe we are truly being faithful disciples of Jesus.

What do you think?

God, you see my heart.
You know my
hurts and pains.
You sit with me in my brokenness and comfort me.
Use me as you will to be open to the hearts of others.
Help me be open too that I might sit with them and together we might know your peace even amidst sadness and uncertainty.
May this be my p
rayer.

Amen. Wherever you are this day: Love Accepts You, No Exceptions.

Justice, Pain, Equity, and Sleep: A Cripple Convergence Story

Justice, Pain, Equity, and Sleep: A Cripple Convergence Story

“Justice”
Judge not.
But, what about justice?
Lord, will there be equity?
How long must we wait,
For heaven’s sake?
Watching others die,
Pain exchanged,
For personal gains.

Reveal your plans,
Here and now,
Let Love transformed,
Become the norm.
Just make it soon.
Can’t you see?
I’m dying too.

inside photography of church
Photo by Adrien Olichon on Pexels.com

Hey Y’all,

I planned to write something else today (and, have it up before now) but, I’m exhausted.

One of the most difficult aspects of chronic pain is that you never know what you’re going to get.

I know I’ve overworked my body recently, which isn’t saying much by nondisabled body standards frankly, but I’m feeling pretty bad. My entire body hurts.

If you are a praying sort, prayers are appreciated.

Positive thoughts are always welcome here. 

Another part of my struggle with chronic pain is what I call painsomnia.

Simply put, that’s insomnia caused by pain and, in case it isn’t clear by now, I don’t sleep much.

So, here I am.

Exhausted and typing for public consumption. There’s probably a law against this somewhere. If it’s in my bedroom, I’ll plead cripple ignorance.

Anyway, I digress…

I know many people have it worse. This is also a frustration of mine.

I think about these things at night while not sleeping.

We live in a world filled with injustice. 

Racism.

People exploiting others for their personal economic gain.

Outright hate.

There’s prejudice of all kinds for many people.

Maybe it’s always existed but it seems worse than in recent memory.

Meanwhile, overtly and covertly, those on top by virtue of privilege are still working to make more, pay less, and take more away from the rest of us. 

Look at healthcare.

The elite are in court right now working to take away the few remaining protections of the Affordable Care Act. (USA) Things like coverage for preexisting conditions.

Social Security and Medicare coming next.

(I feel like I’ve talked about this before, though, I’m too tired to look it up.) 

You don’t have to look too hard to find something happening that will hurt most of us in one way or another in exchange for profits. There are plenty of examples.

Some folks are just marginalized more than others.

That’s intentional. 

If they can keep the fighting focused on the fears of those who have little and those who have less, they win. Divide and conquer.

This strategy is working. They’re on top! 

The disparity between the top and the bottom is growing while the middle is shrinking.

Meanwhile, all I want to do is sleep. But, sleeping is what brought us here.

And, I get frustrated. I want justice now.

I know Love works toward justice.

I just wonder how many people will die waiting for change? 

I wonder, “Will it be me?”

That’s the thing about justice. Prayers are good. Action is better. 

One of the mantras I repeat most often is “God’s Love works most often through our own hands and hearts.”

God doesn’t need me but God can use me.

I’m reminded of Micah 6:8

He has shown you, O mortal, what is good. And what does the Lord require of you? To act justly, to love mercy, and to walk humbly with your God.

So, here I am.

I’m awake anyway.

How about you?

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance

A Crip Summer Night’s Dream

A Crip Summer Night’s Dream

This weekend my wife and I performed in a rendition of William Shakespeare’s, A Midsummer Night’s Dream, with Inclusive Theater of WNY.

We had small roles as the fairies Peaseblossom and Moth and, though it will likely take weeks for my body to recover, I’m glad we did it.

There are many microaggressions that accompany disability from hostility to outright exclusion. However, one of the worst is invisibility.

People just don’t expect, see, or know disabled people in traditionally nondisabled places.

For the record, that’s pretty much everywhere.

We just passed the 29th anniversary of the Americans with Disabilities Act. Yet, most of life remains inaccessible. Think about how often you go into places with just one step.

I could list obstacles for days just as a wheelchair user.

Since I’m talking about our play, how many stages are accessible?
(Hint: Not many.)

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Image: Woman with red hair and blue glasses next to man with dark hair, glasses, and full bead smiling dressed as fairies.

This keeps us isolated and invisible. 

When you don’t meet people different than you in your daily life, you don’t notice they are missing. Moreover, they are often viewed as an inconvenience when you do notice them at all.

Instead of considering the limits of their opportunities you think, “Why do I have to build a ramp?”

This is why relationships and representation matter. You care about people more when you meet and build relationships with them.

Many people I encounter have never truly known a wheelchair user before.

Likewise, if someone never sees another person with whom they identify, they don’t see possibilities.

That’s why I did it.

That’s why I persevered.

That’s what makes waking up in this body aching for recovery worth it.  

Most of all, that’s why I’m grateful for Inclusive Theater and the opportunity it provides.

Plus, I’ve met some really cool people.

Maybe someone saw the show or will read my words and begin imagining for themselves. 

I hope you’ll consider my words too.

I’d be happy if you did.

Wherever you are this day: Love Accepts You, No Exceptions.

Peace Love and Acceptance