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Posted by on August 21, 2015

I woke up with a song of praise jogging through my mind, bouncing off my ribs, echoing in my heart and just in general jiggling my innards.  Well, what’s left of them:


Yeah, I know.  Me, too.  All it needs is for me to see the lyrics, and my spirit’s up on it’s feet, singing and clapping.  My mind and body sometimes take a few minutes to catch up. . .

There are times my soul is exhausted.  I’m tired from the constant effort to act like I feel better than I often am.  Chronic health issues present unique challenges that are often as debilitating as anything known to medicine.  Some of life’s most demanding, embarrassing and severe disabilities do not show.  Chronic illness can drastically alter your daily routines and chronic pain can test the will of the strongest person.  It brings with it overwhelming emotions, self defeating thoughts, crippling pain, daily heart ache, and so much more. 

Some of life’s most demanding, embarrassing and severe disabilities do not show. 

Stop.  Back up and read that again.  It’s hard sometimes even for family members to remember:  there are things you not only should not but cannot do and stay healthy.  Sometimes you are the only one who knows where those boundaries are.  Putting yourself first isn’t selfish.  It’s necessary.  Chronic fatigue is just words to one who’s never experienced it.  If you have, you’ll understand this:  naps are no fun when they’re a necessity instead of a luxury.  If you’re resting, it is not “laying around, wasting the day getting nothing done.”  It’s recovery.  It’s vital.

Overdo it today, out of service tomorrow – and, for some of us, the next day.

I’m one of the worst at seeing a boundary looming, but stepping across it because I don’t want to seem unwilling to pull my weight, to do my share.  I don’t do it often, because my body’s abrupt and forceful in apprising me of the error.  It’s not pretty.

I know some of you relate to this.

Most who deal with such disabilities want neither pity nor condescension.  Because of that – because we don’t go around dragging one leg and wearing an “IGOR” button or something else as obvious – there are the inevitable comments borne of ignorance.

“Oh, come on–you can do this.”

“Must be nice to not have to work.”

“Quit making excuses for being lazy.”

“It can’t be that bad.”

“Got a whole church praying for ya – you just gotta have more faith!”

“Disability, huh?  How much you gettin’?”

“Know just how you feel!  I broke my finger one time.”

“Oh, woosa maddoo–oo not feewing dood?”

All I need to say is, “You don’t look sick” to get knowing looks and rolling eyes from anyone who deals with chronic illness of any sort.  One got real tired of hearing that and responded with, “You don’t look stupid, either.”  No, not kind; but to anyone who lives with a chronic health challenge, it’s understandable.  We live with it every day, like walking around with Sasquatch on a leash.

A big leash.  Just because I’m used to coping with my deficiencies and have become used to my ‘Normal’, that does not mean it’s no longer real and has no more ability to take me out if I get careless.

When I became a professional writer I knew something had to give.  That something was me.

It was – is – God’s idea.  Nature, karma and Medicine all agreed I was dying.  It seemed inevitable even to those of us who were praying otherwise.

Everyone was saying, “Nobody can survive this.  The human body can’t experience this disease, this much resection, major surgeries this close together, and this much trauma in this short amount of time and live.”

God said, “This one will.”



© d. dean boone, august 2015

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