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Thanks for visiting my diary. I've been journaling since 1984 and have chosen to share some of my entries online. They are not all positive thoughts, but I hope that reading them might be a blessing to someone who needs encouragement.
If you are just coming to my diary for the first time, please read my introductory entry, where I share some background that is important if you plan to follow this diary regularly.
Please also visit my music page, where you can hear samples from my debut CD, I Believe, which features songs written based on experiences shared in this journal.
On January 23, 1992, I really had it out with God. I had been attempting to read through the New Testament, but it seemed thatevery time I began reading, I was reading about people who had been healed. By this day, I had finally had enough. Was healing available today or not? If not, then I didn't want to read about it. If so, then I didn't want to believe in a God who obviouslydidn't think I was good enough to deserve it. I threw down my braille Bible and started typing in my journal file on my computer. I unleashed all the desires I had hidden for the previous six months while trying to convince myself that God would use me as I was and that the desire for healing was a stumbling block placed in the way of my spiritual growth by Satan. I released all the pain which had been building since the doctor's admission that he didn't believe that lowering the pressure in my eye would lead to the return of my vision.
The desire won't leave me, Lord. I don't know why. I don't know whether it is a stumbling block or not. I don't wantto focus on it--I have been over this and over it and over it before; what else can I say? But I have to ask You for it. ...
I remember writing in April that I heard You say You would heal me. Please don't let me hear in vain. Tell me I didn't hear wrong. This IS the desire of my heart, and it will not leave me. ... I want to believe You can do this. I really do. I want You to do it, if You will. I don't know how much faith I have in Your ability to do it.
Immediately after writing those words, I lifted up my head and saw that my roommate had left the lamp on over her desk. I had not seen any light for eight or nine weeks. My hopes started to rise, but it was not until a few hours later when I located a lamp in the window from outside a house where I had never been before that I allowed myself to believe that God was showing me that He could, indeed, heal today.
Over the next few days my vision continued to improve. By January 26, it had reached the point of being comparable to theamount of vision I had had eight months earlier when I got my Seeing Eye dog. It was useful once again for locating doorways and large objects which could serve as landmarks.
Over the next few months, I experienced periods of extreme light sensitivity which were followed by clearing of my vision. After each of these periods I would notice that there were a few minor improvements in what I could see. One evening in April, Iidentified the color pink, something which I had not done since childhood.
In May, 1992, I saw the doctor again. Despite the improvements in my vision, my pressure remained dangerously high. I was referred to a glaucoma specialist in Houston who confirmed this fact. "You need to have surgery as soon as possible," he stated flatly.
Shocked, I questioned him. "But my vision is fine," I protested.
"With your pressure at this level," he acknowledged gravely, "you could lose that vision at any time."
The surgery was done one week later, on June 8. It was supposed to be a measure which preserved my remaining vision. It would not improve it.
My vision improved.
Eventually, my vision did stabilize and was useful for the next several years. I even gained some benefit from a custom-made contact lens with an extremely high power and designed especially to fit my eye, which was smaller than the average person's eye. However, I became too confident that my pressure was stable, and I stopped using the medication which had been prescribed to keep it within a manageable level.
In April, 1998, I realized that I could no longer see the lights in my house. How long had this been going on? How long hadI been assuming that things looked as I thought they looked? When had I stopped seeing anything but the brightest sunlight?
My pressure had crept up to those dangerous levels again, and my cornea was scarred. A new combination of drops was successfulat lowering the pressure, and my vision did improve slightly. However, on most days things continued to appear through a greyish fog which only glaring sunlight could easily penetrate. The retina specialist who had been seeing me since my childhood recommended that I have a corneal graft.
In July, I moved with my family to Indiana. Following the recommendations of people with whom I communicated via an Internet- based support group for people with ROP, I saw Dr. Michael Trese in Michigan who has studied ROP extensively. He recommended that a surgery be performed in which the detached portion of my retina would be reattached and my cornea replaced with a donor cornea. If this procedure was successful, The greyish film created by the extensive damage to my cornea would be cleared and I might have some benefit from the retinal reattachment.
I would be lying if I said I wasn't frightened. Sometimes the immune system attackes these donor corneas as if they are anillness. This is called rejection. One risk of the transplant is glaucoma. Will mine become worse? I could lose my remaining vision and even the eye. There was a time when I thought that every amount of vision was worth saving. Having gone through this vision loss, I have changed my mind. This grey fog is not useful or stable. My hope, of course, is for improvement. If that improvement doesn't come, I will have some grieving to do... But at least what is left will be stable. And I will have the satisfaction of knowing that I tried. The surgery is scheduled for December 4.
But is my trying really what God would have me to do? What if He doesn't want me to have the surgery? I don't know how to makethat decision.
In his book, Out of the Silence, Duane Miller suggests, "The will of God for our lives consists of doing those things we desire to do, the things we are equipped to do, and the things we have opportunity to do." Of course, this book is not the Word of God; but if this is a formula which works, then some last-minute things will make my decision, and I will have to trust God to provide or deny these things.
My desire is to have the surgery. I have the opportunity to have the surgery. At this point, I am only partially equipped to have the surgery. Dr. Heidemann, the cornea specialist, has reduced his surgery fee by 60 percent and agreed to allow me to pay the balance out in installments which are within my financial ability. I am still waiting to hear whether Medicaid will approve the payment of Dr. Trese's fees and the hospital stay. This leaves only the eye bank to pay. There is a technique commonly referred to as "putting out a fleece". It involves asking God for a confirmation that a plan is the right plan. In a book I read that there is a difference between putting out a fleece and asking for a sign from God as many people do when they do not believe. Putting out a fleece involves making wise decisions--actually, asking God to confirm a decision already made.
So I am putting out my fleece. Lord, if I am to have this surgery, then please provide the means to pay for it before I leaveon Thursday. I thought of asking for that provision to be made sooner, but to do this would be to place You in an unnecessary box. It is easy to cancel plans to go if necessary. It would be a disaster to cancel them sooner because I did not have the resources and discover the next day that the resources were there. I cannot make bad decisions in putting out my fleece on the basis of my impatience.
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