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.