Going Out: 'Is It Really Worth It?'

For someone with a mobility problem, social situations can be nice — or nightmares

Article Highlights:
  • Author Kristal Hardin takes readers on a wry journey through some social situations made awkward by muscle weakness from limb-girdle muscular dystrophy, and explains how she now evaluates all extracurricular activities to determine if they're really worth the trouble.
by Kristal Hardin on July 1, 2012 - 3:05pm

QUEST Vol. 19, No. 3

Peek into the inner workings of a disabled person's mind contemplating various extracurricular activities. There are so many considerations to be taken under advisement.

Author Kristal Hardin

Otherwise, the consequences may range from slightly humorous to somewhat humiliating to ultimately disastrous.

Those with physical limitations will agree that a routine pre-examination of any endeavor is not paranoia, but a sound reality check. My personal experience has put me in various situations with a smile pasted on my face, pretending to enjoy the sights, sounds and company of those around me. All because I did not ask myself: “Is it really worth it?”

Examine the evidence

Recently, one “do I stay or do I go” event had several factors to consider.

First, “the location.” There were “steps.” Whether it’s many or few, to a person with limb-girdle muscular dystrophy, the destination might as well be on the moon. My legs refuse to climb steps. So does my power chair. This meant I would be required to use my manual wheelchair.

Second, “the entertainment.” It was a pool party. From previous experience, I know for a fact that my arms and legs turn to rubber in any attempt to ascend or descend a ladder. And a crane was not hired for this occasion.

Third, “practicality.” My arms have lost the strength to maneuver a manual wheelchair. So wherever my chair is parked, there I stay. My heavy-lifting ability is gone, too. That includes me, myself and I. In and out of the wheelchair or on and off the commode. This means a restroom break requires “all hands on deck.” Not my finest hour. So attending places unknown can be risky business. Prompting me to ask that all-important question “Is it really worth it?”

This time I decided it wasn’t.

Expect the unexpected

Now, I am not endorsing a hermit’s existence. It’s just my inner social butterfly has learned to pick and choose, shall I say, my “adventures.”

In the early days of my diagnosis, I would not let uncooperative body parts prevent me from living the life of Riley. One particular hike included dragging my somewhat dead body weight over hill and dale to float on a raft in a clear mountain stream. Glorious sunshine twinkled through the trees while I relaxed on the crisp, cool waterfront.

Then Judgment Day came.

The difference between out and in was, now I was soaked and wet. My body was slippery, my feet unsteady in shoes now loose, sloshing and slip-sliding off with every step. The one friend who helped me in was no longer strong enough to wrestle me out. The last family standing was gathering their things to leave. The one person observing my struggles piped up, “You girls need ‘lift help’?” Our “extra hand” was a registered nurse.

So was it really worth it?

Going in, I’d say, “yes.” Coming out — “not so much.”

Just say ‘no’

My latest exploit came from giving in to peer pressure. I have a weakness for “we’ll help you!” The sincerity moves me every time. Twenty of my friends planned to attend a special movie event. Upon arrival, everyone chose the upper balcony seats. “You have to sit with us. The picture is so much better up here.”

Without sounding like a party pooper, I like the wheelchair spot. But against my better judgment, I went along with the crowd. Two people elected to use the so-called “fireman hold” to carry me up the stairs. I am not sure what you call their technique, but I got the worst wedgie of my life. On top of that, since I am unable to bend or lift my legs or feet, the top of each foot connected with every step. By the eighth row, I was ready to either “tap out or cry uncle.”

The next test came trying to precariously maintain my balance with a cane and a bad case of vertigo while walking on a sticky floor in the semidarkness toward my seat in the middle of the row. This disease also makes it difficult to transition from standing to a sitting position in a graceful manner. So dropping into that unusually low, cushiony seat, felt like free-falling without a parachute. Fortunately, the rebound effect did not land me in the next row.

The movie was everything it was hyped up to be. But my mind was preoccupied. I ruminated on how to reach ground zero in a way that would involve the least amount of pain and embarrassment for me, and difficulty and collateral damage to my chivalrous assistants.

Post-movie credits, a new approach was suggested. Two people lifting, but this time I put one arm around each of their necks and they put an arm under each of my knees. Anyone watching got a bird’s-eye view of what giving birth in midair might look like. It was a quicker trip down the stairs, and relatively pain-free. But definitely less attractive. So was it really worth it?

Despite the kindness and generosity; my honest answer has to be “no.”

Ready, set, roll

But “yes” is my answer of choice if I can bring along my power chair. I love the independence that comes with being the master of my own domain.

The places that are wheelchair accessible have made life a true adventure once again. Now when I travel I see the beauty of things in “real time.” Not from a car window, or grabbing a quick glance before I return to eyes-down, continuous-watch, walking-mode to avoid every pebble and crack in the pavement so I don’t trip and fall. I am so grateful the hob-waddling and hanging onto someone else’s arm is over. And no one parks “this baby” in a corner anymore.

My latest feats include: the beauty of Bathhouse Row in Hot Springs, Ark.; the exotic foods, sights and sounds of New Orleans; and a safe, simple stroll in my backyard with the dogs on a daily basis.

So when the opportunity to enjoy some aspect of life presents itself, I will always wonder “is it really worth it?”

But if it is handicapped accessible, the answer will most likely be “yes!”

Kristal Hardin, 54, of De Queen, Ark., is a freelance journalist and former columnist for the weekly De Queen Bee. Nowadays, Kristal uses her power chair and waist-high view of life to photograph ground-level wildlife and flowers in nearby fields and woods, creating unique postcards. Kristal admits limb-girdle muscular dystrophy has slowed her down, but says that, “with a little imagination, even the slow lane has its perks.”

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