More Than Legs

Bright and early last Friday, my friends dropped me off at the airport so that I could surprise my daughter on her Birthday. As a mother with a disability, life has been full of twists and turns, and ups and downs. This trip was full of surprises in and of itself. I was on my way to Atlanta, and my connecting flight was in Phoenix. When I got off the plane I misunderstood the directions, there was an agent willing to walk me to my next gate. But independent Lyla asked them what the gate number was and said “Oh I can get there”. It seemed like a piece of cake but it turned into somewhat of a nightmare. Because after I waited several hours, I knew something was wrong. When I asked an attendant what was going on, she said “You were supposed to be at gate 28, not…

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With recent economic events, cultural shifts and ministry adjustments our disability leaders are under greater pressure than ever as they navigate their organizations and programs through this treacherous era. These challenging moments are consuming some, scaring others and isolating a community further. Living with disability has taught me many things about life, about family and has crafted my leadership immeasurably. Additionally, this wheelchair I sit has enhanced my learning about pressure, its effect upon us, the dangers pressure can have, and the benefits it can bring. Here are a few of my lessons.

The first lesson is to be familiar with your pressure points and the underlying causes for the pressure. I have a couple friends that have battled with chronic pressure sores. Occasionally, they have to be evaluated through a process called “pressure mapping.” This exercise tells them where their chair seating supports them and where the source of stress in coming from. The bottom line, pardon the pun, if you don’t identify the source of your irritation, your conflicts will create deep and lasting wounds. Unfamiliar pressure can lead to huge gaps in leadership and result in unnecessary scaring. 

Additionally, pressure reveals our need for support and identifies where you are supported. A fundamental lesson of disability is that one cannot be successful on one’s own. God did not design us to stand without having others to bear our burdens. Pressure will teach one how to depend on others and upon whom it is safe to rest your load. Idea: if you are experiencing a heavy weight, invite 2-3 trust confidants to coffee and share with them your pressure and let them assist you in letting off the steam.

Finally, understand the benefits of pressure. During a recent small surgical procedure, I noticed that the surgical team periodically put pressure on my the site they were working on. In the procedure the pressure had two primarily purposes. One it minimized the bleeding and, secondly, it minimized the scaring. Every leadership pressure will have a positive opposite. It may creatively redesign of your goals, staff or expectations; it may be that it will expose your strengths or weaknesses; or it may be that it will cause you to become extremely focused. The real benefit comes in the testing of one’s skin, sort of speak, that pressure brings.

Regardless of which outcome becomes revealed in the process of leadership, assessing your points of pressure is vital to achieving long-term leadership success.

Share a thought on leadership and pressure with our readers by making a comment below.

By Jim Hukill

Some would say that it is not for us to question God. He is after all the creator of all things. Perhaps! However, it appears to me that God’s shoulders are big enough for us to rest our perplexing inquires upon. In the midst of suffering/pain, human nature lifts its voice and screams, “Why, God, why?”

Many of the greatest heroes of the bible confronted God with questions that demanded a divine response (Moses, Jonah and Job). The authors of Psalms & Habakkuk are included in this list.

As with many questions of ‘why,’ there is buried beneath the surface a feeling of injustice. Human inquires, even demands for God to give some accounting for the seeming unfairness.

Listen to the crushing anguish plea of the prophet Habakkuk. “How long, O Lord, must I call for help, but you do not listen? Or cry out to you, “Violence!” but you do not save? Why do you make me look at injustice? Why do you tolerate wrong? Destruction and violence are before me; there is strife, and conflict abounds. Therefore the law is paralyzed, and justice never prevails. The wicked hem in the righteous, so that justice is perverted.” (Habakkuk 1:2-4 NIV)

The disappointment we get from reading these verses from Habakkuk is within the context of when one sees the injustice of life and feels helpless in changing the circumstances. This suffrage rips and tears at the fiber of one’s soul until the hurt is so intense that it demands a response from the human suffer.

Yet, as human kind, we find ourselves in a place where no other species on earth ever reside. We are suspended on the swinging bridge of reason between suffering and emotional resolution. The proverbial space we call “Why?” Enormous insecurity seizes us with a desperation for an heroic act and a stabilizing command for calm. There between the crisis and the meaning of it all come the insatiable questions…

Why, God, why?

Who is responsible for…?

How did this happen?

What did I do to deserve this?

What’s next?

What do I do now?

Where do go for here?

On and on they go. The more the questions come, the more unstable our lives become. The greater the instability, the more complex and distressed the question. Our appetite for reason and resolve grows insatiable until we are sucked into a vacuum of personal despair.

There is so much to say about those questions that scare us, stare at us, taunt us and perplex us. Maybe soon I’ll speak more of these inquires to our maker. But for now I’ll leave you with perhaps one response resounding through the hall of heaven from the almighty Himself…

GOTCHA!

There in the middle of our human suffrage we become desperate for Him to speak. In a web of uncertainty we are desperate to hear Him. We are right where He wants us; weak, worn out, collapsed desiring to hear His voice.

By Jim Hukill

In the late 1960’s, my father, a Texan, picked up a church magazine and read an article about the need for pastors in the poorest region of our country, the Appalachian Mountains. Those paragraphs stirred my dad’s heart. So, in December 1973 our u-haul truck backed up to a small apartment attached to a small church in Richlands, VA and our family began a ministry journey that would last more than thirty years.

When in that region of the world, one can be easily captivated by the culture of the people; their music, their charming dialect, and sense of strong community. There, deep into the heart of earth, coal miners work endlessly in conditions that take their breath away at life’s end and kicks up a dust that settles on everything nestled back in the deep hollows of the hills. Nothing, however, is quiet as breathtaking as those beautiful mountains. Rising above the dust, the poverty, and personal struggle of life are the most awe inspiring mountain ranges… stretching on without end.

Among all the hypnotic charms of that life, what I remember more than anything, is the strength of my father’s call to that place and the people that lived there. It was among these majestic monuments of God’s creativity that my parents gave of their talents, invested their relationships, and sowed their spiritual passions into the lives of people in need; the mountain folk who just needed a pastor.

There were times when my dad, brother, and friends would tie ropes on my chair to traverse terrain that was virtually impossible. I recall my dad pushing and tugging my wheelchair through brush and weeds, across rocks and terrain so steep that my chair would nearly turn over. He would exhaust himself. For what? So, we could sit together along a creek and fish, talk, experience, learn.

Amazing! There was so much to be in awe of; things that could grab one’s attention for hours.

Wow, those days were so enlightening. One lesson I took from those moments: when life’s struggle is overwhelming, from a mountain’s summit one can rise above it all. You see, at the top of the mountain you would almost forget how hard the climb is. Through every struggle of life, I am so motivated by that life experience as a teenager. Every challenge seems to drive me toward another vista.

The power of a call. The power of a view. The power of Dad.

Recalling these experiences has never been as important to me as they are today. December 28, 2008 marks the second anniversary of my Dad’s passing. Thanks Dad for giving me the power to climb.

By Jim Hukill

Bump, uh. Bump, uh. Bump, uh – one step after another. After several flights of stairs, the third floor of the old college administration building couldn’t come fast enough. It was the fall of 1980, pre ADA, and I was being drug up the stairs of this old building just to audition for a music group that would travel and represent our school.

After the exhausting ride to the third floor, my friends parked me in a room to await my turn to tryout. Several other candidates came in, including one young man who sat next to me. He seemed very self confident, friendly and a bit inquisitive about me, my chair and my story.

During our time of chitchat, this guy asked me the question “Do you miss walking?” My reply, “You can’t miss something you’ve never had.”

At the age of twenty months, I was diagnosed with a rare neuro-muscular disease. Ultimately this form of Muscular Dystrophy would lead me to the use of a power wheelchair and into many confrontations with uncertainty. Words of confinement and limitation intruded into my will for life. “Your son will never walk and he’ll never live to see the age of ten.” This is the context of my journey, clashing between impending dead and promised life.

The great conflict between existence and nonexistence is whether disability will be a state of physical positioning or a prison of emotional confinement. I refuse to surrender to a notion that a lack of physical activity is a vital sign of my existence. The first great life-swing I will take at this face of impending lifelessness is that I will have a determination of participation. When events remind me of my disability I cannot lie back and take life as it comes. I must activate myself to contribute.

A life-encounter of this importance will require me to maintain a global perspective of my disability. While I may be the one who carries in my body the weight of disability, the world on the outside of the armrest of my wheelchair is bigger than the world sitting between the armrest of my chair. Disability did not just happen to me it also intruded on the lives of the people who love me.

A life-punch that is a knock out blow is a spirit of enjoyment. Just because my body carries characteristics of lifelessness, it doesn’t mean death. In fact, this is an opportunity for my spirit to rise up in life. It is here that the power of God pitches its tent and demonstrates that His grace is enough. The blood of Jesus flowed across my ground of lifelessness to give life were life is not intended.

Strong legs, walking, running, jumping have never figured into my ‘missed’ equation, but feeding myself, holding a cup of coffee, brushing my teeth, signing my name…each of these I have had and life, my precious friend, has taken them away. What is left is a ‘missing’ of the one who breathes through me. Soon I will stand and embrace Him with living strength.

By Jim Hukill

Disabled! There are times I feel more like that word than others. Sometimes, I am able to transcend the traditional concept of what disability looks like and actually achieve in the “normal” world. But, then those times come, invariably, when I am visited by my old friends, suffering & limitation, and am reminded that I am a weak, frail human.

Those moments may be framed in events like a broken wheelchair, sickness that robs me of my low reservoir of strength, or having the need for a bathroom run and no one is around which paralyzes my day in order to concentrate on being able to wait it out. These reminders of disability may look different and occur with/without frequency for you, but everybody has those times. Even the Apostle Paul was reminded of his humanity (II Cor. 12:7-10).

My greatest reminder of disability comes to me in the reflection of fatigue upon the faces of those who provide supportive care for me every day, especially “that” look upon my wife’s face. This image reminds me that no matter how hard I try I can never match the level of sacrifice and investment that it takes for Rhonette to continue to care for me, maintain our home, and contribute to our ministry. When I gaze into that picture I am truly confined by guilt, inadequacy, and the anger of knowing the injustice that my “private” pain is having on the lives of those I love. Pain is never really private, is it?

Reflecting on these graphical mental imprints typically challenges my creativity and competitive spirit to prove that the traditional concept of disability is not acceptable to me. At this point I pick up my “signs of life”.

Sign 1: Participation. We must be reminded that marriage and family is a partnership. It requires participation from all parties involved. When events remind me of my disability I cannot lie back and take life as it comes. I must activate myself to contribute what I can to those I care for.

Sign 2: Perspective. While I may be the one who carries in my body the weight of disability, my family carries the emotional weight of the disability as well. Each one views the limitations from a different reference point. In the moments that that point of vision overwhelms my caregivers I can become a crutch on which they can lean, and learn from what I have received from my education through disability. Foremost, of which is the fact that every adversity has an end to it.

Sign 3: Pleasantness. I have discovered that when Rhonette is embraced with the fatigue of care, her greatest need from me is a pleasant, accepting attitude. During her moments of remembering her disabilities I have the opportunity to cradle her with words of comfort, lighten her load with words of encouragement and joy, as well as, protect her with a covering of peace.

Sign 4: Permission. This sign is a combination of all that is listed above. Our family members, our care giving community should be allowed the freedom to digest the emotions that come from a constant care service. The care recipient truly can only grant this freedom. When I care for Rhonette she has a greater reservoir of care to give.

Honestly, I think the twinge of guilt, inadequacy, and anger which comes from my reminders of disability will never completely go away; however, when I pick up my signs of life, and wave them energetically I am reminded that disability is a state of mind more than anything else. Let’s show our signs of life.

Contact Information:

Eleos – The Care Network, Inc.
Lift Disability Network
4700 Millenia Blvd. Suite 175
Orlando, FL 32839
407-228-8343
407-210-3901 fax
jim@liftdisabilitynetwork.org

www.eleos.org
www.liftdisabilitynetwork.org