The Wild, Wild West of RP

Post Title: The Wild, Wild West of RP

Consistent Eye Appointments

With a progressive eye condition, it’s advised to have consistent, periodic eye checks. Last January, I wanted to know what I could really see. This is not measured by simply reading the eye chart, although that can give an indication. There is a test called Field of Vision, which measures it.

My retinal specialist, whom I see every August, is very busy and does not have time to administer this exam. So, he referred me to another ophthalmologist, who I actually had seen earlier.

The referral took several months so I could not take the new test until late November. I talked with a friend with severely low vision. She tried to explain how the results are configured but it seemed very complex. It has to do with intersecting points and specific terms I can’t remember. Finally, the lower the visual field is, it is measured in degrees.  Before I had the test done,

The Exam

The Field of Vision Exam consists of looking into a machine. Every time you see a flash of light, you press a button. For my right eye, I think I pressed the button only three times –and perhaps a few more mistaken presses due to my increased anxiety. My left eye was a little better as I caught eight or nine flashes of light. Dismal results overall—out of perhaps 250 total for each eye.  My sight felt so limited!

Interpreting the Results

When I received the printout of the exam, I didn’t understand the figures, pixels and notations. I estimated I had less than one degree of sight remaining. I grappled with two questions:

How could I be sure? And why did it matter when I knew the end result would only limit my perception of how life would go for me?

Still, I wanted to know.

So, after calling the ophthalmologist and not getting a response, I made an appointment to decipher the results. I asked my brother-in-law and his wife to come with me. Maybe they could help me better understand since they did not know much about my condition. They would have good questions and would catch what I missed due to my hearing loss.

Non-Committal Response

I had not anticipated the ophthalmologist, an upbeat, quick moving man who would not hesitate to help a soul, to be vague. “This test does not really measure what you can see or not see, Amy. There are too many variables.”

“Oh, uh, like what?” I had always heard that this was a reliable test from others in my sight support groups.

“Such as lighting. Time of day. The amount of sleep you had the previous night. The tiredness of your eyes….”

“Oh. “ I was determined to find out. “But can you estimate the number of degrees?”

He looked at me thoughtfully. “Why?” It felt like a challenge. Perhaps he was thinking, like me, how that would limit my perception of my life. He then veered away from the topic. “I can see if we can open up some sight for you with a laser treatment,” he suggested.

“Right now?” My spirits lifted.

“Right now!” His body language promised hope, or so it seemed to me. With a deft movement, he handed me my white cane.  I followed him into another room. My step was jaunty.

Laser Treatment

The procedure was painless. I looked into a machine, tried not to blink. I heard a number of clicks. A few minutes later, we were done.

“Now we wait and see if some of the cloudiness goes away,” he instructed.

I smiled brightly. Even if the laser treatment brought about little or no change, I promised myself I would Remain Positive.

God Ministers through Willing Hands and Hearts

I felt God’s kindness through this man’s willingness to minister to me. He would not let me focus on limitations. He directed his skills and outlook to the positive, where he could possibly make a difference.

Gratitude swept through me in a slow wave.

I had focused on finite terms. Ultimately, nothing wrong with this approach. It can be helpful to understand our boundaries, conditions and situations. But isn’t that the world view? That can stop our progress and hinder our outlook when God promises so much more despite the numbers.

They are new every morning; Great is Your faithfulness. Lamentations 3:23 NKJV

Results of the Laser Treatment

Initially, I thought the treatment helped. But shortly thereafter I did not really notice any change. I still struggled with my computer, I was so ready to embrace better vision. But in the long run, I did not really experience any change. Still, I was grateful to the specialist for trying to better my situation.

Trusting God Day by Day

Trusting God in our situations really is the blessing, the miracle. I thought about how God did not change my brother’s situation. But He made sure Mike had the care he needed throughout all the emergencies. Sometimes I feel like a toddler still learning to walk. I imagine God a few steps ahead of me, waving me forward and catching me when I falter.

The pendulum swings back and forth from fear to faith/ I wish I were stronger and that that my steps would not falter. But they do, and I have to keep realigning myself, recalling His promises.  That is the nature of my eye condition, that I am continually adjusting, so there is always hope. I wonder if I were completely blind if I would just accept it now and forever. Losing sight little by little is not easy. I recall how I once boldly said, “Even when all my sight is gone, I will praise God! I want to be used by Him.” The reality is God blesses us right in the middle of our falls. We need to move forward day by day in our reality, whatever that entails. We can do that by recalling how He has brought us through challenging times in the past and His promises. I have scripture around the house to remind me I am not alone and of His provision.

Latest Appointment

Fast forward to mid-July. I just had my latest appointment with the same doctor. The technicians took various tests (not the field of vision exam). I also took a regular eye exam. Much to my dismay, I could not see the big E with my right eye. When I finished deciphering the letters with my left eye, I said, “Let me try again. Maybe I can see it.” I focused my concentration …. And God gifted me with the sighting of the big E with that eye!  You would think a miracle had happened! I was so thrilled!

“Wow! Yeah! Great! I SAW it! I actually saw it this time!” I felt like I would burst with happiness.

The door opened and my doctor arrived.

“Doctor! Doctor! I saw the big E with my right eye! Isn’t that wonderful! I didn’t the first time. But I thought I would try again, and I could do it!”

He looked delighted at my enthusiasm.

There was a large computer screen, strategically placed next to me so I could see it, and the latest configuration of each eye with all its bumps and irregularities out.

I waited expectantly.

“Your retinas are exactly the same as they were seven months earlier. No change at all. The last time you could not see the big E with your right eye,” he said gently.

“Oh really?” I had not remembered that.

“So, I did a little better today?”

“You did.” He smiled. “Your retinas have not changed. That’s the good news. They have not gotten any worse.”

I looked around the grainy office, feeling a bit confused. “But doctor, it feels as if my sight has decreased a lot in this period.” I explained my new hesitation with stairs and how entering and exiting rooms or going in or outside affected me.

“Well, you have to realize your eyes don’t work like other people’s eyes. You don’t see an image. It’s your cones that are disintegrating and you only see bits and pieces. Your brain has to make sense of them, so it’s like a puzzle and it makes a composite picture. Your brain is filling in the missing pieces.”  His voice sounded gentle and kind.

I sighed. I knew the cones had something do with color. And the rods and cones worked together. But I had forgotten their actual role in helping me determine what I saw.  I needed to re-educate myself.

“So, no change in my retinas?” I could deal with that. “It’s the cones that are the culprit now.”

The Wild, Wild West of RP

He nodded. “I wish I had better news for you. Be patient, Amy. I’m glad you are seeing the retinal specialist in August. You need to keep those appointments. They are on the forefront of research. RP is a lot like the Wild, Wild West. It’s uncharted territory and they are learning more and more about it as time goes on. When they do more studies, we need to get you on a list of patrons available for testing. It will be within your lifetime. Maybe ten years down the line.”

I wanted his optimism. I wanted more faith. I wanted to believe in science.

Settling on the one phrase that amused me, “RP is like the ‘Wild, Wild West.’ I had been living with it for about thirty-five years. The doctor who first diagnosed me said, “Little is know about RP. We know that you will go blind. We don’t know when or how fast that day will come. It could be tomorrow. It could be five years down the line. Or it could be later. We just know the result is blindness.”

I gulped back my fears and focused on the optimism of taming the wild, wild west.

Annie Amy Oakley, Sharpshooter!

I shared that quote with my writing coach, and she texted me back that I was ‘Annie Oakley,” and that made me laugh. Real laughter that sprang from my soul.

I liked the image. Being a sharpshooter in the lawless, uncharted territory of Retinitis Pigmentosa.

I had already spottled the big E and gunned that down. I blew the smoke from the edge of the gun, twirled it around, and replaced it in my holders.

Being Annie Oakley of the RP Wild, Wild West suited me just fine.