STILLPOINT Archive: last updated 07/06/2012

FEATURE | Visions and Revisions: The Journey of an Artist Losing His Eyesight

Visions and Revisions: The Journey of an Artist Losing His Eyesight
by Norman Jones

As a theatre director Norman Jones had spent a great deal of time learning how to see the nuances of his world. Nowadays he's learning that vision can require revision.

In 1989 I was diagnosed with retinitis pigmentosa (RP). It is a genetic, degenerative disease of the retina, and those who have it are usually blind by age 40. I was 34 at the time.

Imagine a big round disc--that's the retina. On that disc is a series of stacked coins. Every one of those coins is a rod cell. In the middle of the disc the stacks are taller, and they get shorter as you get closer to the edge. Every once in awhile one of the discs on top dives off into the retina--a suicide diver. Then another one does it--and no one knows why they do it. Maybe they think they're having fun, or maybe there's some kind of secret genetic terrorist war going on. Suicide cells die on the retina and decompose to form a pigment--thus the name. Over time the stacks of coins get shorter and are covered by the pigment. Eventually even the tallest stacks of coins in the middle are gone.

Each person with RP has a different rate of deterioration--but it's steady and unrelenting. I don't see as well today as I did yesterday; and I see better at this moment than I will tomorrow. I still have some of the center stack of coins in each retina. That means I can see directly in front of me, but I don't have any peripheral vision. Normal peripheral vision is 118 degrees; I have 19. Anything under 20 is legally blind. Think of spending every moment looking through the viewfinder of a camera--you want it to be a wide-angle lens, but it's not.

When I was first diagnosed I was devastated. I tried to compensate for the pain by learning all I could about the disease and about any research related to a cure. I was angry at God; didn't feel like talking to Him at all. I went though a period of emotional and spiritual darkness. I could not understand how this had happened to a guy who had learned to see very well. I'm a theatre director, and I had spent a great deal of time developing the ability to truly see what is around me, to notice the nuances of my world-learning how people express emotions with their movement and the objects they interact with.

I wanted to hide from everyone and everything, including God. I felt like I was living a series of deaths; waiting for the next stage of vision loss, wondering when would be the next plateau. When would I quit driving? When should I start using a white cane? Slowly I began to realize my vision required revision.

I resisted using a cane for years. It was difficult to accept the label of being disabled. I didn't want people to stare, to look at me with a mixture of curiosity and pity. But finally I took a small step toward acceptance of myself as a disabled person. I used the cane for the first time on one of our annual Gordon theatre trips to England. Before the trip I remember praying "Okay, God. I'll take this one step. Let's see what happens." And God showered me with grace, having taken that little tiny step of faith. The cane was great! As I walked down the street, people cleared out of my way. Crowds practically dove into the streets; I felt like Moses parting the Red Sea. When I bumped into people they'd apologize to me instead of me apologizing to them--and I liked that.

But I don't want you to think everything became suddenly wonderful when I began to take these tentative steps of acceptance. It continues to be hard. I still stumble. I walk into things. I recently apologized to a pole--twice. I think I must keep an entire squadron of guardian angels busy ("Okay, he's on the move again--let's go; let's go--Michael, you take the point; Jimbob, you take the wing, and Ringo, you go the other way"; I really like the idea of having two guardian angels named Jimbob and Ringo).

As I continue to take those tiny steps forward, I experience God's grace. You know that passage "Your Word is a lamp to my feet and a light to my path." I met a guy from my church who has one of those lamps from Palestine from the first century--exactly the kind of lamp they're referring to. "How much light will that thing give off?" I asked him. It was tiny, tiny--just fit in the palm of his hand. He replied, "Enough for one step." One step; now I have enough light for one step. Now, one step. Faith.

Sometimes your vision is going to require revision. Suffering and loss will come to you. Someone will betray you. You will experience failure; perhaps the loss of a dearly loved family member or friend; perhaps your own physical challenges. I know I am speaking to many who have experienced terrible loss. Part of the reason it hurts so much is because we know it is not intended to be this way. We were intended for paradise, made in the image of God. But we live in a fallen world, and on this side of eternity, as we continue to strive for Eden, loss will still be with us.

A few suggestions to you from what is helping me: As my vision of myself as person is being revised, I'm learning to accept the difficult lesson of being dependent on other people. I often don't like it. I'd love to jump in a car and go somewhere on a whim. But my dependence on others has made me the recipient of many extraordinary kindnesses.

When we were in Edinburgh a couple years ago, we attended a bagpipe concert called the Military Tattoo--about 10,000 bagpipes in a field and about 60,000 people watching them in the shadow of Edinburgh Castle. Afterwards I was making my way out of the crowd, and a Scottish fellow came up to me asking if I needed any help. "No, no," I said. About a minute later he came back and said, "I don't care what you say, I'm gonna help you anyway--here we go. I'm gonna take you to your people." So I said to myself, "Okay, I want this guy to have this blessing--why not? Let's just enjoy this." So we walked down the Royal Mile arm in arm, talking about bagpipes and Scottish farming practices. And I thought "Who gets to do this?"

God has showered me with grace as I have allowed myself to learn something about dependence--and I encourage the same for you. Learn to be dependent on one another and dependent on God. Notice how many times in Scripture Jesus depended on God the Father while he was here. We also should depend on God the Father-as well as on each other. You may be thinking "Wait--I know the people around me; I'm supposed to depend on them?"

But we are all imperfect. Think of anyone you know. They have something; it may not be RP--maybe it's ADD, OCD. Everybody's got something. But I declare unto you: He who is without syndrome, let him cast the first stone. The travelers you are with on your journey are every bit as imperfect as you are.

Another encouragement to you is to engage in sacred conversation. Plunge into significant conversation beyond the normal everyday stuff. Plunge into those conversations as if your life depended on it. Get your face out of Facebook for one hour every couple of days and have a significant conversation with someone face to face. Listen to them. Take time. Give yourself permission to not know what to say. Take time to go beyond the word "like." Take your time so you don't have to (over)use that word.

I suspect the world is full of lonely people. If we could see a bunch of cartoon bubbles above people's heads, we would read things like "Nobody really knows me"; "I'm all alone"; "I wish somebody cared." But don't allow a sense of impending doom to prevent you from having a vision for your own future. Do not be afraid to have that vision--boldly. And allow God's grace to revise your vision when it is required. Allow that vision to be sketched in dust rather than cast in concrete. Take one step. You have the faith for that.
And share your own imperfections-your hurt, your loss, your grief--with the hurting, grieving Body of Christ, in whom God's perfect Spirit dwells; who--despite us and because of us--God uses to speak to one another through His grace.

There are plenty of days when I would love RP to go away. Even for awhile. But despite our feelings at times to the contrary, we have a faith in God; a God Who is alive; a God Who is here. A God Who loves us. Who can separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No! In all these things we are more than conquerors through Him--and those--who love us. (Romans 8:35, 37)

I am not telling you these things because it sounds good; I am telling you because it is true. Unchanging and forever. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth nor discouragement, nor loneliness, nor failure, nor snotty old RP, nor anything else in creation will be able to separate us--us!--from the love of God that is in Christ Jesus our Lord. (Romans 8:38)

And the people of God said "Amen!"

Norman Jones, M.A., a theatre director, actor and writer, is associate professor of theatre. Since coming to Gordon in 1985, he has directed 39 plays and supervised 28 student-directed productions. Norm's interest in encouraging the creation of new theatrical works has resulted in 13 premieres or commissioned plays. This article is part of a convocation address he delivered at Gordon September 26, 2007. The audio podcast is available on Gordon's iTunes U site. He hopes to take his story to churches, Christian schools and conferences, and can be contacted for information.



Norm Jones