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I Have a Rare Disease #RareDiseaseDay

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Rare Disease DayIn January 2000, I woke up with one eye dilated. When it didn’t go away, I called the doctor who saw me immediately. There was concern that I could have a brain tumor. That was scary. The nurse called around to find an ophthalmologist who could see me right away. The eye doctor tested some eye drops in my eyes and determined I had a neurological disease called Adie’s Tonic Pupil. He prescribed some eye drops that I could use to force my pupil constrict and he added, “You can look it up on the Internet. If there are any new treatments available, let me know.”

Jaw dropping.

Back in 2000, the Internet was less helpful than it is today. But that’s when I discovered NORD, the National Organization of Rare Disorders. They listed Adie’s Tonic Pupil or Adie’s Syndrome as a rare disorder affecting fewer than 10,000 people. I ordered the report from NORD about my condition (now freely available), but back then it was all medical jargon that I didn’t understand.

Fortunately, one of my seminary classmates had some medical schooling and worked in a pharmacy (he went on to complete med school). He took time from our busy course schedule to sit down with me and sort through the scary diagnosis and explanation. There were gaps forming between my nerves and the signals from my brain couldn’t get their message across. In bright light, my brain would tell my eyes to react, but my left eye wasn’t getting the message.

With one eye dilated, everything is blurry. Reading was nearly impossible because the left side of the page appeared washed out like an overexposed photo. My depth perception was off. I bumped into things a lot. Driving after dark was frightening because the bright lights were painful in my dilated eye and I couldn’t perceive which stoplights were closest to me and which were down the street. I had severe headaches because my brain was reacting to the constant pain of too much light.

1 Peter 5:12All this was going on while I was trying to read large amounts of text for seminary. Despite my best plans, sometimes an attempt to medicate my eye so I could read ended up preventing me from reading anything for hours. Mixing my eye drop solution wasn’t a perfect science. The 1 to 5 ratio was only as accurate as the precision with which I could squeeze out consistently sized drops without getting too much or too little. Sometimes I’d get too much and my pupil would constrict to a pinpoint, making my normal eye compensate by dilating, which then threw my perceptions off in the opposite way. I’d just have to sleep it off until the eye drops wore off.

I found a neuro-ophthalmologist at the University of Washington but it took six months before I could get an appointment to see him. In July, I hoped to get some answers.

The specialist told me I had a 1 in 4 chance of having the other eye affected. Sure enough, four years later, I woke up in January 2004 with the other eye permanently dilated. You’d think this would balance everything out, but now my eyes were both essentially paralyzed and non-responsive to changes in light.

Have you ever had both eyes dilated during an eye exam and spent the rest of the day waiting for the eye drops to wear off?

Interestingly, in both cases, five months after the onset of the dilated eye, my brain made an adjustment and the headaches stopped. It stopped receiving the signals from the pain receptors and accepted a new normal. I don’t have constant headaches unless I’m tired or sick and my body doesn’t have the resources to block the pain receptors.

All this is to say, something as small as a tiny nerve controlling an eye can play great havoc on a person’s life. It taught me that very little about my life is truly within my control. Things other people take for granted, I am painfully aware of on a daily basis. Most of all, this lack of control has taught me to depend on God to do for me what I cannot do. I must rely on God’s grace to help me accomplish the smallest tasks like reading a book. This is how I first began to understand the scope of God’s crazy grace.

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