It has been a little more than a year since I lost sight in my right eye. How did this happened? No one fully understands. I woke up at 1am on Monday morning, July 20’th, 2015 with my eye puffy, extremely blurry, and painful. I have always been legally blind (which may or not be related to my primary disability of cerebral palsy.) Therefore, going blind has long been a fear of mine. I don’t play around with my eyes, so I immediately went to the ER.
At the ER, the doctor looked into my eye. My husband Jayson and I explained my symptoms when I woke up. We told him about my eye issues since childhood. For reasons not exactly clear, I have always been legally blind. I had corneal scarring which would flare up and cause blurriness and pain. I would have to use steroid drops until my corneas “quiet down.” I told him that I have not had this attack in 15 years, and this experience was different in its severity.
I also told the ER doctor that I have had pain in the back of the ride side of my head and neck for over a week. The doctor placed pressure on my sinuses with his fingers to check for a sinus infection, and sure enough, I broke down into tears. The pain was so intense.
I thought this meant the sinus infection must have spread to my eye. It made sense to me, given the proximity of the eye to the sinus. However, the doctor assured us that it couldn’t happen like that. The doctor said it appeared that I had an abrasion of some kind, but abrasions were relatively common. He gave me ointment with instructions to use it, I think, for 3 times per day for seven days.
Jayson and I were back at home by 6am. We were relieved that it wasn’t anything serious. We applied the ointment all day, by my eye seemed to have been getting worse. By the night, my eye was even more painful. Jayson was super concerned, but I wasn’t about to go back to the ER. So, my husband called an urgent care center to seek advise. The center was closed, but the on call doctor called us back. That doctor told us to not to worry. I haven’t been on the ointment not even 24 hours yet. I needed to give it more time. Once again, we felt relieved.
Then the unthinkable had happened. By 7am the next morning, I couldn’t see out of my right eye. I jumped out of bed and crawled to the mirror. Remember, I don’t walk due to cerebral palsy.) I had thought that my eye must have been swollen shut. To my horror, my eye was extremely puffy, but it was opened. I just couldn’t see out of it. Once again, I had no time to feel, just to act. I had my in home health care attendant dress me. At 8am, we called my eye specialist. After we explained, the doctor told us to get to the eye center as soon as possible. After looking at my eye for a few moments, my doctor ordered me back to the ER to have a CAT scan done. He didn’t know what was going on, but it was not good.
Jayson took me immediately the ER. My eye continued to increase in swelling and pain. Unfortunately, the ER was extremely busy that day due to three separate car accidents. It took 8 hours to get a CAT scan, and five of those were spent in the waiting room. During this time, I could barely communicate due to the pain. (Some people get loud as they approach their pain tolerance levels, I tend to withdraw into myself.) I kept drifting off to sleep.
When I finally received the scan, which took 10 minutes. The doctors at the local hospital realized they couldn’t help me because they had no idea what was going on. I couldn’t see, and it was being to bulge out of my head.
They sent me to Indianapolis, about an hour away, at 10pm that night by ambulance. This hospital had a speciality in eye trauma. They immediately gave me morphine, antibiotics, and fluids. (They changed my pain medications after awhile because the morphine was not doing a thing for my pain.)
I ended up being, in the hospital for ten days. My medical team consisted of an general medical doctor, an infectious disease doctor, and eye specialists. For the first four days, they thought I had an infection that was attacking my eye. So, they placed me on round the clock antibiotics. My eye, however, didn’t improved, and by this time, my eye didn’t look human. (I would post a photo, but I want to be sensitive to people’s different tolerance levels for disturbing images.) Finally, the eye specialist, who had disagreed with the infectious doctor all along, made an incision in my eye to prove that there wasn’t any infection. He was correct because there was not a hit of puss. My eye just became inflammatory for unknown reasons, which is known as idiopathic orbital inflammatory disease. The doctor said this usually occurs as an one time incidents for women in their 40’s. (I was just days away from my fortieth birthday.) They began giving me high doses of steroids, along with the same round the clock antibiotics and fluids. The steroids did the trick. In less than a week, the eye went back in my head, and I had no more pain. So, on day 10, I was released from the hospital. At that time, I only had a small amount of vision, but the doctors thought it would get better over the treatment of the steroids. Besides, there was probably some fluid in back of the eye that needed time to drain.
I wasn’t too worried about my vision. I had lots of trouble with my eyes when I was younger, and they always got better. In fact, God immediately healed my extreme blurriness after I got a discouraging report from my eye doctor when I was 22. Of course, I knew this was an entirely different eye issue. However, I felt confident that my eye would either get better or God would heal me. It would be all good.
Only, it hasn’t been all good. I never gained my vision back in my right eye. In fact, I even lost the vision that I came home with. The doctors theorize that the optic nerve had been deprived from oxygen too long from the pressure of the extreme swelling I had before the correct treatment was found. The nerve had died, and there wasn’t anything medically to be done. My heart crushed, realizing my vision would have been saved if I had been given steroids sooner.
Now, people may assume that physically adjusting to life with one eye would have been my biggest struggle of this past year. Surprisingly, it hasn’t been. I think this is because I was already legally blind in both eyes. I never had that much depth perception because I also had a severe lazy eye. I never had the ability to drive, read signs at stores, make out facial expressions from a distance, or see little furry creatures scurry across yards. So, physically adapting to the lost of my field of vision had been relatively smooth. I just had to learn to scan with my left eye more widely and be even more aware of my surroundings.
The emotionally dealing with going blind in my right eye has been a hundred times times rougher. It pains me when I enter a room, call out to a friend, only to realize he is standing right next to me. It is a slap in the face reminding me what I have lost. Sometimes I feel afraid of going totally blind, and that isn’t an irrational fear. Remember, we don’t know what exactly happened to my right eye. (We even test to check if I had any type of an autoimmune disease that had attacked the eye, and that wasn’t it.) The same thing could happen to my left eye. I could be totally blind ON TOP of my cerebral palsy!
The very thought terrifies me. I have blind friends who live full lives, and I have friends with severe physical disabilities who live full lives. However, I do not know how I could deal with both total blindness and cerebral palsy. I wouldn’t be able to drive my power wheelchair any longer. I wouldn’t be able to use a white cane because I am unable to maneuver a manual wheelchair. I don’t see how I would be able to do my transfers independently. Would my beloved husband be able to deal with an increased dependency on him? (Jayson said he would, but I know that even the best marriages don’t always survive these things.) Would I have enough attendant care for me to remain at home with Jayson, or would I have to go to a nursing home? (When the government makes it cuts, services for people with disabilities are usually on the top of the list.) No matter how I slice and dice it, my independence would be gone.
And what about using technology? I can’t use speech recognition yet because it is not currently advanced enough to understand my speech impediment. (I find this ironic, by the way, since I can carry on conversations with some 8 year olds.) The thought of not being able to use technology to communicate and express myself is, well, unthinkable.
The few seconds after waking up in those first several months torn at my heart the most. I had never realized this in the past, but there is a millisecond when we are waking that our eyes are still closed. I panicked within myself for that millisecond every morning. “Oh God! I can’t see!” Then after that tiny drop of time passed, my left eye would open, and I would see. Great waves of gratitude and relief washed over me. Then, a few seconds later, great shadows of disappointment and sadness fell on me. In my dreams, I was seeing with both eyes. I would have to acknowledge that Jesus hadn’t healed me after all.
Speaking of Jesus, losing my sight in my right eye has really caused me to wrestle with God Almighty. Jesus has been the one person who has already been with me, even when I did not know Him. He was the One who taught me about love. The One who was with me in the darkest of moments. The One who called me one of His. Jesus protected me from destroying myself. He has answered prayers, and given me physical and emotional healing so many times in the past. He spoke to me constantly to my soul during the ten days I spent in that hospital, reassuring me that He was with me. So, I just believed assumedmy eye would be healed.
However, God hasn’t healed me yet. And I don’t know why. Since I like to think I have control over God and life, I would like to chopped it all up to the fact that I just didn’t have enough faith. However, I cannot say that I didn’t have enough faith. I did and when I grew doubtful, I had others pray. In fact, hundreds of people have been praying for my sight to be restored. Whenever, I had the opportunity to have spirit leaders to pray, I was there.
No, it hasn’t been a lack of faith that Jesus has not healed me. So if not that, then what? After months of wrestling with God that involved weeping, yelling, pushing in, pulling away, searching the scriptures, calming down, getting riled up again, periods of silence, and periods of hearing, I still have no clue. However, I think I am learning to trust Jesus in deeper ways. Do I follow Him even when I don’t get what I want? Do I acknowledge that God is God, and I am not? Can I accept that God is the one who governs me, and I am not the one who governs God?
I think these are the kinds of questions we are to ask if we truly face our suffering and confusion. These questions can’t be easily answered, not by a long shot. They force us to take off our masks, lay down our formulated answers, and get to business of forging a deeper relationship with God Almighty, the One who suffered for our sins so that we could do such outlandish things.
In this hour, I can say that I have no expectations of God. I acknowledge He is not a genie or a Santa Claus. I can’t manipulate the outcome of my life simply by quoting the correct sets of Bible verses. He has the right to do what He wants with me. He can heal me or not. I don’t want to place limits on my Savior any more. Letting go of control terrifies me. It is so unnatural. However, it liberates me even more. If I understand that Jesus has the right not to heal me, then I must acknowledge He has the right to heal my eye or anything else of mine. It really isn’t any of my business. I am to follow.
As you can see, losing my sight has caused the last year to be very interesting, and I have so appreciated the family members and friends who had allowed me to struggle with this journey instead of trying to “make it all better.” I am equally grateful to my church, Urban Light Community Church, for the same reasons.
Instead of putting up good fronts, I think we should wrestle with the tough questions in our life. It is scary, and it does suck majorly when we do this. I think, in the end though, we have more honest relationships- both with God and the ones who we love. What more could we want then that?
Keep being brave.