Eight years ago, I was diagnosed with a somewhat rare – about 1 in 1000 of people with eye problems have it – eye condition called “keratoconus” (literally “cornea cone”). It means that my corneas – the clear lens on the front of the eye – are thinning. As they thin, the pressure of the eye pushes them out, which forms a cone on the front of the eye. As can be expected, the cone distorts vision, mostly by causing light to flare out. Sometimes, the condition is called being “blinded by light.”
The condition is progressive. It tends to start in the late teens or early 20s (I was 23 when I first discovered it) and progresses through the 40s or 50s when it usually stops. Currently, keratoconus cannot be cured or stopped. Hard contacts can slow it down, but they can’t stop it. Laser eye surgery is not an option (in fact, it would be dangerous for me because my corneas are too thin). The only way to really fix the problem is to do a corneal transplant, where they cut out the cornea and put a different one (from a deceased donor) in its place. But that is only used for extreme cases. Most of the time, contacts work just fine.
On Wednesday, I learned that my left eye had progressed so far that it is likely beyond help from contacts – it pops the contacts right out because they high-center on the cone. That means that a corneal transplant has suddenly become very real possibility.
Since I found out, I have been going through the Stages of Grief. The stages include: denial, anger, bargaining, depression, and acceptance. They typically focus on grieving for someone that has been lost or is dying, but they can be applied to any tragic situation. Losing a job, for example, can send someone through these stages (Frasier once did an episode with this as the theme). Going through the stages can happen very quickly or it can take years.
I think I am somewhere between bargaining and depression right now. I think I skipped right over anger.
Wednesday morning, I was most definitely in denial. When the doctor told me, I was just fine. It was like hearing the most normal thing in the world. As If saying “I think that you may have to have a part of your eye cut out and part of a dead person’s eye put in its place” was as common as saying “the sun came up today.” When I called Jenna afterwards and told her about it, she gasped, and her reaction made me think “I should be more upset than this, shouldn’t I?” I wondered if something was wrong with me.
It wasn’t until I was taking Miranda home from ice skating that night (she is learning to figure skate and is amazing!) that it first started to sink in. I was explaining to Miranda what a corneal transplant was and I suddenly realized that I was talking about myself! The thought, “In order for me to see well again, someone has to die,” hit me pretty hard and really shook me.
After that, I slid into bargaining. That night and the next morning, I prayed very hard that the contacts will work (we’re going to try one more time and there is at least a sliver of hope, but even then it will only be a delay tactic, not a solution). It was odd. I’ve lived with keratoconus for several years now and I thought I had accepted the inevitable. But this has suddenly made it more real than ever before.
Last night, I went to Westminster College to be measured for my cap and gown (yay!) and stuck around to attend an awesome presentation on the Geography of Buddha by Jonathan Duncan, a fellow student of the MPC program. The measuring only took a few minutes so I got to the presentation very early. As I waited for it to begin, I slipped into depression – mild depression, but depression all the same.
I began to wonder about things I’ve never thought about before: Is there a waiting list? How long will it take? Will it be painful? Will I have to stay in the hospital? Will the world look different afterwards? Can I just ignore it like I’ve ignored contacts for the past 8 years (I have a terrible fear of putting things in my eyes)? Eyepatches are cool, aren’t they? Maybe that will work instead?
It is a weird, existential experience to think of having part of someone else physically grafted into your own body. It is so different from when they added a titanium plate and several screws to my leg. That is man-made and artificial. This will be “real.” Over the past two days, I have often thought about the donor, who I will likely never meet. I don’t know how the donor process works for corneas, but my guess is that the person is alive right now – a living, breathing human being that, whether they know it or not, is about to die. There are so many questions: Are they sick and suffering? Are they healthy? Are they a good person? Are they the scum of the earth? What kind of life have they lived? Do they have a family that will miss them? Are they anticipating death or will it come quickly? Will it be peaceful? Will it be violent?
So many questions . . .
I know I’m jumping the gun somewhat. After all, there is still a chance that contacts will still work for me. And, even if that fails, I don’t know how long the process takes or if there is a waiting list or really anything about it. I’ve been living fine without contacts for 8 years already, so maybe it won’t be a big deal for a while. But it makes you think, you know?
And in my case, it apparently makes me grieve.
I hope I reach acceptance soon.
