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QTMs for 10/21/1: “SHOULD I WAKE UP TIRED (Or Let ‘im Sleep?”)

Posted by on October 21, 2014

Some disabilities don’t show.

  • “Why, you’re just the picture of health.”
  • “If you hadn’t told me, I wouldn’t have known!”
  • “Wow–you really need to tell your story.”

In order, the answers are:

  1. “Well, I’m not.”
  2. “That’s why I tried to open your eyes.”
  3. “That’s why I’m putting all this effort into writing and working on a book telling of our journey.  I’m taking a chance you’ll let me inform you.”

On and on the misunderstanding and unawareness goes.

Coffee - disabled4I try to not be angry or bothered by it.  People can’t be blamed for what they don’t know.  They don’t know what they don’t know.  And many times though they politely ask, they don’t really want to know.

Not really.

Unseen disabilities don’t gather sympathy.  Our nature is to ‘oooh’ and ‘aaaah’ over people in motorized wheelchairs operated by blowing air through a tube.  To gaze in regretful sorrow at someone using a walker because they drag a leg.  To mutely admire young men and women with prosthetic arms and legs.  We elbow one another.  “See?  SEE?  Now, THAT’s a dis-a-BIL-itee!”

Forgive me a moment of transparency.  Do you think this is some kind of game?  That disabled persons would ever CHOOSE to be stared at, even have people revulsed by what they see and experience in us?  And why would you ever think that just because you can’t SEE what’s wrong with me and others like me, it somehow doesn’t count?  It’s not real?  Would it make you feel better if I and others like me hang those vile DISABLED placards on our mirrors and spend money on DISABLED license plates?  It wouldn’t make us feel any better, because then we’d be hearing, “Oh, there’s nothing wrong with him.  He just lied and got that so he could PARK here!”

Hanged if you do . . . (sigh).  Sadly, there are otherwise-able people who DO game the systems because they’re lazy.  We’re not talking about them.

With respect, this isn’t just about me, though I’m the one baring my own feelings and opening a small window into the life of the disabled – seen and unseen.  This is for every person struggling to cope with life events that for whatever reason have slowed or stopped altogether their ability to work.  We already deal with periodic grayish gunk of depressive feelings of uselessness.  We long since learned to paste on a brave smile when ignored and overlooked by other people.  We’re used to being looked at with suspicion, maybe silently judged when we don’t just step up and put out some effort.

Or there are the professional carers.

I had it happen again Sunday.  A person had reached out to me several times in the past few years for BC and I to come and share our story.  Every time  I offered to do so; yet there was always a reason why we couldn’t.  Too busy. Traveling.  Schedule won’t allow.  You know–the normal stuff of life.  “But, hey–we really want to hear about it.”

I couldn’t help the automatic internal response:  “Uh-hunh.  It doesn’t feel like it.”

Sunday, this person stopped and inquired how I was.  I hesitated, then honestly answered, “Dehydrated”.

“How did you get that way?”

“Short answer?  You have 21 feet of small gut; I have 18 inches.  I’m not supposed to be alive.  I have chronic fatigue syndrome and did too much over the past couple of weeks, getting ready for Shepherd’s Fold DAY OF RENEWAL.  This happens whenever I overdo it.  It’s just part of my ‘normal’ now.”

“Why?”  While I was trying to coherently respond, two other people came up behind the person to whom I was trying to explain why I was slurring my words, confused and occasionally stumbling.  They didn’t ‘see’ me, either.  As if I weren’t standing there, they began a spirited conversation with my polite questioner who seemed relieved for the rescue.

Understand:  these are all acquaintances of mine, individuals I know.  I worship and interact with them regularly.  I’d like to think they’re my friends, for I believe they’d be mortified to know how their actions came across to one of the Stealth Disabled.

It was rude.  Thoughtless.  It stung.  It said, “Your importance to me is based solely on what you can do for me, or for when I need you for something.”  It’s happened before, but it had a couple of extra barbs when it pierced my spirit because I respect and look up to everyone involved.

At least I think I still do.

I didn’t want to feel neglected, shunned; I’ve been there before.  I stood for a moment, that old familiar feeling of rejection seeping into my mind, heart and spirit–hoping the one who’d asked after my health would say to them, “Hey, I’ll visit with you later.  I need to finish this chat if you don’t mind.”

Nope.  The longer I stood there the longer I felt like an invisible fool.  Though I readily give God credit for His healing in me, it’s always humbling and not without some trepidation to open up inner feelings to someone.  I’d worked up the courage to be honest and had been shut down.  I’d been dismissed.  I don’t believe that’s what was intended; but that’s how I perceived it and how it hit me.

Knocking me down is the easy part.  If you want to keep me there, you’re gonna need some serious backup!  I don’t stay down any longer than it takes to figure out how to get back up again.

I don’t think any of them even noticed when I quietly turned and walked away.  It will take a lot for me to give any of them the chance to hurt me like that again.  So I guess they are friends; they’re the only ones able to wound someone else like that.

Looks are always deceiving.  What you see is the thin skin of surface impressions.  The real person lies safely beneath armored layers.  It takes time to coax his or her story out.  Getting in a hurry and deciding you don’t want to hear it after all is a dandy way to assure that person will likely never again share it.

“What’s a ‘stealth disabled’ person the way you’re using it?”

That’s a great question; thank you.

We fly under most people’s radar because we don’t have our lines out, fishing for pity or notice.  We customarily park and walk like regular folks.  We don’t wear a big DISABLED tag on a lanyard around our neck.  We don’t focus on our DISabilities, but rather on our remaining abilities, making the most of them.  When our disabilities DO flare up and get in the way, we usually cope alone, staying out of public settings until things even out.

“But you can’t always do that, can you?”

No.  I wouldn’t have been in worship Sunday, since I prefer not advertising when I’m at considerably less than my best.  Yet I’d made a commitment to serve on the Praise Team, and I take those commitments seriously.  Being disabled doesn’t somehow let one just shrug off the value of their word or worth.

“So what’s it look like from behind your eyes?  From inside you?  What’s a day in the life of a Stealth Disabled like?”

You’re starting to sound a little like me.  I appreciate your questions.

So you want a peek at my ‘normal’?

  • God could have totally restored me to my former height of 6 feet and robust, powerful 250 pounds, bursting with loads of energy and stamina.  For His own purposes, He chose instead to work through my current 5-9 and 170 pounds of ‘bubble’ energy and stamina.  That means I wake up every morning at zero.  Though a morning person, it makes no difference how long I’ve slept.  A rare full night’s sleep only means I wake up refreshed at zero.  I still start any day with no energy due to chronic fatigue syndrome.  Any expenditure of energy, then, immediately begins sliding down the Negative side.  I ‘front-load’ my days’ activities, knowing about 1 PM I’ll start fading.
  • I have more scars than I ever wanted to collect:  PICC lines, Hickman catheters, even repeated IV sites.  And, of course, The Big One.  5 times I was opened, three of those to cut away dead and dying gut and resect what was left.  I don’t go shirtless to prove anything, but beneath my usually-decent clothing there’s a honkin’ big, wide, ugly scar running up and down my belly.  The faint lines where the stay-sutures were are still there.  They only use stay-sutures when the wound has been opened so often the flesh on either side will no longer hold staples.
  • I have a custom-built belly button.  My original equipment one got cut away trying to save my life.
  • When I over-extend, I get dehydrated.  Since the small intestine is the means to rehydrate, and I don’t have one any more, it takes me the better part of a week to begin coming back to my ‘normal’.  During that time I act and sound either drunk or high.  The kids all think that’s the best time to play board games because they think I’m so FUN-NEEE.  In good nature I’ve learned to laugh along.  Later when I’m by myself I cry a little from the accumulated embarrassment, and we press on.  In cases of severe dehydration – which we never know is coming until it hits – I need to go in and have several gallons of high-test infused via IV until I rehydrate.  Having very cold liquid pumped into your vascular system equals freezing from the inside-out.  I’ve learned to dress VERY warmly whenever that becomes necessary.
  • I’m eating all the time.  The minute I’m fully awake, no matter what time it is, I need something in my stomach.  Part of that is from being NPO twice for six weeks at a time.  NPO means “no food or drink by mouth”.  I’ve been so hungry that I wasn’t hungry any more.  Some of this is psychological:  “I’ve almost starved to death; that’ll never happen again.”  The other part is that I absorb very little nutrition:  just enough, apparently, to keep me functioning for what God has me now doing:  writing.  And before you say, “Boy, I wish I could eat like you”, I assure you:  you don’t want or need this burden.  It gets old.

So, yeah.  No energy at the best of times.  Slight, boney build where I have to really work to create muscle.  A roadmap of scars showing my journey’s been a rough one.  The term still bugs me but I have to accept it . . .


It’s just that after eleven years, I’ve learned to deal with it.  I’m used to my ‘new normal’, now.  I manage to pull off looking and for the most part acting ‘healthy and normal’ because I choose to approach life that way.

Coffee - disabled3I’m not interested in looking like a victim.  I’m not.

I’m a survivor, an overcomer.

Big difference.  Knocking me down is the easy part.  If you want to keep me there, you’re gonna need some serious backup!  I don’t stay down any longer than it takes to figure out how to get back up again.  “Pretty good” just doesn’t cut it when you’re up against outstanding.  My goal is always to be outstanding.

To look at this amazing journey God’s given me with anything but joyful appreciation would be to question His grace, love and continuing plan for my life.  That I refuse to do!  I’ve already been and done so much I never expected.  What kind of goofball would I be to not be wide-eyed with anticipation at what He’s got waiting for me to be and do in the future?

2nd Cup friend, appreciate where you are in your journey, even if it’s where you don’t want to be.  Every season in life serves its purpose in God’s grand design.  And if you’re one of ‘us’, a stealth disabled’, please work at diverting others’ misunderstanding you and what you’re able to do.  I’m finding more and more that those whom God touches with what I call ‘Healing Plus’ – Him doing some miraculous work in you but reserving some healing so that you continue to rely on Him – are often gifted people in some way.

Find your ability and give your disability to God.  He’ll use it, work through it to touch others.

You are thoroughly amazing – and I admire you!

© D. Dean Boone, October 2014

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