I'm a VHL Spouse. My wife was diagnosed with VHL in 1988 after the first of six spinal cord surgeries. She has been using a wheelchair since 1989. For the past six years, life for us has changed drastically. Her recent disability has changed our lives and challenged us to alter our day to day activities radically.

During the process we've wondered why these circumstances have fallen upon us? Why the creator has chosen us? This situation has challenged my belief in God, his power over the universe and our individual lives.

I'd like to share with you the belief that sustains me, and allows me not to be angry at God, and maintain my faith. My belief centers around my concept of Normalcy and Disability, and my concept of God.

My concept of Normalcy and Disability can be expressed in a passage entitled, "Holy and Without Blemish before God: Disability and Normalcy" by Walter Wink¹. "So the world is divided up into two groups after all -- not, however, the normal and abnormal, or the able and disabled. Rather, the line is drawn between those who are aware of their disabilities and those who are blind to them."

We are all disabled in significant ways, and who is to say what is the more severe disability? Those who are disabled are a reminder to us all that we too have disabilities. We are challenged to focus on our abilities rather than our disabilities. No one is perfect! The concept of perfection itself is misleading, for everyone on this earth has a disability of some sort. We all rely in part on others to overcome our disabilities. Physically disabled people are more obviously dependent than others. It is our disabilities as well as our abilities that tie us to others on this earth.

God has created a universe with a tremendous amount of diversity of living things. All things in the universe have a purpose, be it physical or spiritual, which gives it a life force. All life forces are different and complex. It is the diversity of living things that make the world. No two things on God's earth are exactly the same. What we view as normal varies from one person to another. Depending on where we live physically, emotionally, and spiritually we see things differently. God the Creator has allowed the diversity of the world to develop, and with it comes good, bad, health, and sickness. God expresses himself within all of these life situations.

Let me share with you a passage from a book entitled, God Plays Piano, Too: The Spiritual Lives of Disabled Children² by Brett Webb-Mitchell who has interviewed several disabled children. This passage is about an autistic boy named Joshua. Joshua has a special gift. While Joshua is unable to speak clearly, work, or learn much more than an elementary education, his gift allows him to play the piano with great skill.

"The One who seems to be conducting and playing through Joshua's life is the Creator. We read in Genesis of God's creating man and woman in God's own image, which means, in part, that we too have been made with the innate ability to create or to construct: to take the elements of God's creation and blend and mold them until we fashion something unique in praise and service to God.

It is this aspect of creation that appears to be the driving, brilliant force in Joshua's young life. God's creative spirit, alive within us all, has made it possible for Joshua to play the piano.

Perhaps Joshua is not so disabled after all. Joshua sings and plays music in celebration of God's love for us all. Who knows? It may be God whom we hear playing the piano through Joshua."

The following quotes symbolize one aspect of God, Pain and Suffering. These quotes were shared by people on a Computerized Network called Ecunet™³ in an electronic forum called "Disability Concerns" where people share philosophies, resources, and information on coping with disabilities.

"Sometimes God calms the storm; Sometimes God allows the storm to rage and calms the child."

"Pain can drive us in two directions. Either it can make us curse God for allowing our misery, or drive us to him for relief."

"If you don't have a disability now, you will. If you live long enough, there will come a time when you have to keep going though your heart is pierced through."

Remember the words of Dr. Martin Luther King, "The real measure of a person is not where he stands in times of comfort and convenience, but where he stands in times of trials and tribulations."

1. Walter Wink, "Holy and Without Blemish before God: Disability and Normalcy," as printed in And Show Steadfast Love: A Theological Look at Grace, Hospitality, Disabilities, and the Church, edited by Lewis H. Merrick. Louisville, Kentucky, Presbyterian Publishing House, 1993.
2. Brett Webb-Mitchell, God Plays Piano, Too: The Spiritual Lives of Disabled Children (New York, The Crossroad Publishing Co., 1993).

3. Ecunet™ is a computerized network sponsored by a large group of Protestant Christian denominations. Costs $11 per month plus connection costs. For information call 1-800-733-2863 or 1-203-673-7776. {Note 12/97: Ecunet now has a presence on the internet at http://ww1.ecunet.org/ecunet/)

As published in the June 1994 issue of VHLFF, 2:2. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org

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