Month: May 2022

How are you feeling?

When asked this question recently, I responded, “Emotionally, I’m happy and optimistic. Physically, I feel exhausted and sick.”

It’s easy to get confused about the options you have, to choose the quality of your experience.

Especially when conditioned to use statements like, “I’m sick,” or “I’m in pain.” A more apt description would be, “I’m experiencing fatigue, body aches and a headache.”

No it isn’t COVID, silly. It’s life with hEDS. By being specific I’m reminded not all of me is sick.

The specific sensations I described, alerted me that an illness or flair may be brewing. Or that my physical status quo, remains so.

Kinda like driving through life in a crappy car.
It’s rusty, the tires are worn and the engine stalls when you come to a complete stop.
But you’re grateful to have a car.

Your attitude can be thought of as the weather your car drives through. The car being a body easily overwhelmed by light or sound. It has a weak battery, and is held together with doggedness infused duct tape.

It’s realizing you can enjoy the ride regardless of what you’re driving.

Sure, the a/c is busted, so the car overheating constantly can be a suckfest. One that makes the nicest weather a liability, when so much of trip prep revolves around keeping the car cool.

It’s a challenge to have a solution-focused outlook, when your body feels dysregulated or perpetually sick.

But feeling happy, content or connected doesn’t presuppose you’re comfortable. Not suggesting pain or suffering is a preferable alternative.

Quality of life is not an all-or-nothing proposition. You don’t need to be 100% happy to feel happy. You’re happy because your enjoying the happiness you have.

When you savor a spoonful of your favorite dessert, you don’t need to eat the entire platter to enjoy it.

The latter occurs when you look to the dessert for the pleasure you struggle to create yourself. I’ve struggled with this throughout my life as well.

The more I discipline the ability to choose my attitude when the body struggles, the more able I am to meet the body with patience and compassion.

Frustration and resentment are exhausting. When I focus on the car and all that it isn’t, I suffer.

When I counter balance it by focusing on abundance, opportunity and gratitude. I see how much more there is to life, than what driving distance allows.

Words sometimes sting, don’t they?

Where do you feel it?
In your heart,
Your middle,
Or your mind?

You, the chosen mark.
Serving as a screen, upon which they project
their pain, and suffering.

The message is, they’re hurting.
The method is, they’re hurting you.

Preservation of your emotional integrity, and ability to access compassion are paramount.

Your right to establish bounds, requires action to realize.
Conveying directly that,
“I want to hear you,
I’d love to talk with you,
but not on those terms.”

“I empathize and hear you’re hurting. We need to do better than hurtful words, to find a way through this.
Please tell me what is happening in your body right now.”

A shift in attention to body from brain, helps to settle both.

When cooler heads engage, cooler heads prevail.

In my younger years, I used my body to explore, to express my big emotions. Go big or go home.
I loved to dance, heard rythyms everywhere.

I’d walk for hours. Exploring new paths.
Revisiting familiar ones.
Stopping to sit, my back resting against a tree.
Listening to the sound of my breath, looking deeply at my thoughts and feelings.

This introspection has been a feature of my experience for as long as I can remember.
Would seem I contemplate as a way of being in this world.

Over the past decade, my physical health has declined.

The body that could dance for hours and walk for miles. Now lies in bed. Fatigue often too great, or pain too penetrating to engage life fully.

But I’m not one to take things lying down! (Pun fully intended).

With much gratitude I’ve learned to embrace a wheelchair, as the “Silver” to my “Lone Ranger”.

I’ve discovered the power of taking adventures in my mind. Exploring new areas of my inner world.
My connection with the outer world, with you.
And the point where that which separates us, disappears.

I do miss the freedoms an able body provided me. I’m by no means completely accepting of the present state of things. With every decline or flair, there’s a new loss to grieve.

Within this experience is a deep well of humility.
It gives rise to deepening patience and compassion.
As my body ebbs my spirit flows.

I’m more in the arena now, than muscle alone would ever allow.