Disability, Not Quite Disney World

“So, you are retired,” she said. “You can do whatever you want.” She smiled broadly, with excitement, awaiting a rundown as if I just visited the Amalfi coast.  Nope, got nothin’… “Not quite,” I murmured, and instantly felt the need to defend, shed light, even school her…

I have heard similar comments before.  I know I am not alone!

While being on disability does grant me time and flexibility, Disney it is not!  Equating it to visits to any kingdom, whether that be lavish trips to the United one, or jaunts to the Magical one closer by is just shall I say, Goofy.

She meant no harm.

Yet, I was irked…

This friend hadn’t seen me ‘up and about’ in over five years.  No longer on house arrest, I was delighted to spend time with her sipping java at an outdoor cafe.  It was lovely!

Behind The Scenes

Despite how ‘good I looked,’ my body didn’t follow suit: One of my ribs painfully did a two-step as I tried to get comfy in a metal chair, my dominant wrist was sprained from wrestling a Tupperware lid earlier that morning-making it hard to hold my coffee, and my left hand, too shaky to grasp the steamy cup.  Luckily, witty banter kept my mind off my discomfort for a while, and then I ducked out early.  Once home, I spent several hours flat, like a tired pancake

Don’t Cry For Me Argentina!

An Extended Look

During the week, 3/4th of the time is also spent flat taking pressure off joints, nursing muscle spasms and strained ligaments.  ‘Up time’ is spent in medical appointments, doing rehab/PT/ and other health care related stuff.  I fit in light errands, cooking, and do some light chores.  The latter two require continual breaks. Bored yet?  

Nothing flashy here.

Ok, cry for me a little…

Lack of Awareness

My guess is that my friend was simply unaware of how my syndrome taxes my system and limits my abilities; and longed for ‘free time’ in her own schedule.  She didn’t ask, I didn’t offer.

Invisible illness is a trickster.  We may appear well even when our insides aren’t playing nice.

No one is immune to struggle whether they are waving the flag or dealing with it more privately.

With some reflection, I notice that I wanted my effort acknowledged (not to dwell on ‘me,’ but brief recognition).  That I had prioritized that one activity and that maneuvering, in general, can be tricky.

Show Me The Money (Jerry Maguire 1996-great movie!)

Money myth: There is no extra spending money for Italian race cars or castles in the sky. The truth is, many people are simply making ends meet, and are not well enough to travel. Health related costs are often high, and funds are limited.

The reality is people on disability would prefer to still be working, contributing, bringing home the bacon, and engaging in life the way they used to.

This doesn’t mean purpose and pleasure is now stripped from our lives, but there is real loss, a period of transition, and grief.  Acceptance comes, with a yearning for a bigger piece of the pie sometimes.

Gratitude

I am not suffering.

Receiving disability benefits allowed me to get several surgeries which required lengthy recoveries, giving my body time to heal without the added pressure of work.  It’s why I AM able to grab coffee with my feisty, fun friend. There were years where that was impossible.

I am so very thankful.

Final Thoughts:  None of us really know what goes on behind the scenes with others.  Few lives are struggle-free despite glossy Facebook pics and snapshots of alluring vacations. Life presents us all with hardships and joy.  We get to choose how we respond and engage.

Join In

  • Any similar experiences?
  • What do you wish others knew about your ‘behind the scenes?’

 

4 thoughts on “Disability, Not Quite Disney World

  1. As always, so thoughtful and true.
    I wish people understood this about depression and anxiety too. They can be just as crippling as a physical disorder and effort can be challenging at times.

    Keep changing the world girl 🙂

    1. Thank you, Amy. And yes, just as immobilizing. Recognizing the struggle and effort it requires. I’ll do my best. I honor your good influence 🙂

  2. You are very inciteful, Jill. Keep writing! We all have a lot to learn from each other. I so badly wish your abilities would get easier. I just saw that there are new strides being made with joints in caring for arthritis patients. I’m hoping some of this research can help you more.

    1. Jacqui, Yes, so much to gain from each other. Thanks for your well wishes. I am truly grateful for my progress, and feel more healing is possible in one way or another. So many ways to view it and approach it!:-)

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