Well, last week, I was given a definite diagnosis of “Keratoconus”, which is a degenerative eye disease. The cause of it is unknown, the guess is that it may be genetic. And there are treatments but no proven “cure” for it yet.
I was diagnosed with this disorder at age 21, before this final wake-up call. At that time, I lived in Philadelphia and noticed that I couldn’t see well with my left eye, after nearly getting hit while crossing the road. I swear, I didn’t see the massive SUV thundering my way from my left view, as I stepped off the curb. It wasn’t one of my suicide attempts either (will mention more on that sob-story past some other time!).
Thankfully, the car blared its horn and I got out of the way in time, I was shaken and decided to see an eye doctor for new glasses. That’s when I was told very matter-of-factly, “You have this disease and someday you will go blind.” I think I took it eerily well, as I was often suicidal back then and perhaps I thought, “Oh, well. It’s not like I’m going to live to see that day coming.” No pun intended.
The fact is, I did get better within my depression and began to have a zeal for life. I’ve made it to my thirties and I wish to reach my nineties someday, if possible. I have big plans to be the crazy old cat lady in someone’s neighborhood! And all of my new cats will be named after the crew of “Firefly”! Hooray!!! ^o^
For many years, I’ve been relying on my right eye, because my left eye has been useless ever since age 21. I’ve learned to adapt to not having vision in my left eye, satisfied with being able to see just well enough to continue with my passion of writing.
However, before I moved from Philadelphia to Minnesota a year ago, I noticed that my right eye began to have some troubles. I visited a local eye care center here in Minnesota, somehow thinking that perhaps the diagnosis a decade ago was false and all I really needed was a new pair of glasses. In other words, I was in complete denial and fantasy la-la land. >_>
The new doctor confirmed the old diagnosis of Keratoconus and noted that my condition was becoming worse. However, this time they offered some hope that everything would be fine (unlike what I was told a decade ago), because there was a surgery I could get to stop the progression of the disease. I was given another appointment with an eye specialist who is an expert in this particular disorder.
I was very much hyper about this appointment, as I believed I was coming in to be given information about the procedure, the risks involved, and to gain a definite date of surgery. Instead, the doctor said with a grin, “This procedure isn’t covered by the FDA and therefore it’s not approved in the US. That means it’s not covered by any health insurance. However, it’s on trial here and it only cost two thousand dollars per eye.”
My jaw dropped and I replied, “I can’t afford that!”, while flailing my hands helplessly. I guess it wasn’t apparent to him that I wasn’t a well-to-do woman, as I sat there in my old and beat up “chucks” , a faded Doctor Who t-shirt, and wearing a pair of slacks I’ve had for four years. It is visible that my trouser cuffs are shredded and worn. He gave a pause and then sighed, “Yeah… I guess the price is kind of taxing…”
Kind of taxing!? I wanted to guffaw, “Hey, doc, I have five hundred dollars in my account and it took me months to save up in order to have that! ‘Kind of taxing’!? Yeah right… No, try the word ‘impossible’!” However, I realized that he’s a doctor after all and most likely four thousand dollars is nothing for him to worry about. And besides, it’s not his fault that I lead a bohemian lifestyle, that was my choice. I REGRET NOTHING. O_O
So, he began to try peddling off some hard eye contacts that will improve my vision, but he was quite clear that it wouldn’t stop the progression of my disease whatsoever. So, I have the option of improving my eyesight for the time being, before I lose it and the contacts are rendered useless in the end. I said no to the offer, more concerned with stopping my eyes from becoming worse.
That’s when he squeezed my hand and said a series of words that crushed my heart. He said, “There’s nothing more that we can do for you, without the surgery. Things will progressively get worse, especially in your 40’s through 50’s. We can chart how worse it gets, but that’s all. I’ll make an appointment for your next check up in a year.” u_u
My life and passion is writing. It’s the only thing that gives me joy and I’ve been at it since I was six years old. Stephen Fry once said something about how one’s work should be more fun than fun. I’ve never had such a job that match this description, other than writing. Which is weird to refer to my writing as a “job”, because it has only earned me eighteen dollars in the many years I’ve been doing it! Whoo-hoo.
Even so, it’s the most stressful, time consuming, worrying, beautiful, satisfying, and fun job I’ve had in my entire life! My work is more fun than fun. I rather scowl critically over several pages of rewrites than to do anything else that I consider as fun, like playing video games, watching movies with friends, etc. To be told that in my 40’s and 50’s that it may just all go away (and I’ll be age 34 at the end of this year too), it bought all kinds of heavy emotions down upon my shoulders.
I went home and rushed into the garage (as I live with roommates), so I could swear a string of insults into the air. I felt numb one moment, angry the next. and by the end of the evening I cried. I had spent a few hours looking up my condition and reviewing how very bleak it really was. The argument is that I won’t go blind-blind, but legally blind.
This not much of a comfort, because my left eye is already legally blind and have been so for a decade now. I can’t read or write with the left eye whatsoever, so “legally blind” in both eyes is pretty much blind-blind to me, as it means I am to lose the only passion I have in this life.
I then curled up into a ball and thought to myself, “I could really use a friend about now. This is really heavy stuff.” I posted the news to my Facebook and then cried myself to sleep that night.
By the next morning, I woke up and decided that I would create this blog and keep writing as much as I like for as long as I can. This space will serve as my marathon, before I lose my legs sorta speak. I’ve decided that I’m not going to lay down and give up, to be paralyzed by this, that I will make the most of the time I have left and binge write.
Meanwhile, I logged onto Facebook to add my new blog for friends to check out and came across an unexpected message. Two sisters, who I’ve known from another site before we migrated to Facebook some years back, offered to pay for my surgery! O_O
The women had no mention of it being a loan or anything, they just simply explained that life and opportunity have been kind to them and four thousand dollars is really no trouble to them . The wonderful sisters explained that they believe in “paying it forward” and they really wanted to help me out.
I gawked at that message for a while, not sure if I was still sleeping or not, and I read the message three times to make sure that my right eye wasn’t playing tricks on me. My response was that of awe and I thanked them much for their offer. I also turned it down, because I’m very weird about accepting money from friends, especially that MUCH money! O_O
I explained that I would most likely play a game of chicken with the system and wait for the procedure to be approved, It is possible that by next year policies will be changed and “Corneal Cross-Linking” will be a procedure covered in the US. It is highly successful in other countries so far. with a reported 98% success rate.
My friends told me that their offer still stands and will always be waiting for me. They’ve asked me to take their offer if the procedure is never approved in the US or I find myself close to losing my eyesight. I made a promise that I will take their offer and not let myself go blind. I always keep my promises. So… there is some hope for me yet. ^_^
Some people have shouted at me, “What is wrong with you, woman?! Take the money and run with it!”. However, I’m a odd duck. For now, my condition is stable and I won’t lose my sight over night. I would hate to take such a lump sum from my friends and rush for the surgery now, then a year later it is approved and covered by my insurance. That would suck!
I’m the kind of person who is very much patient and not so hasty in rushing into things. If my eyes are worse by next year and the surgery is not approved, I will take the generous offer of my friends. If by next year my eyes are the same and not any worse, and the surgery is not approved, I will wait again for another year before taking the offer. Or if I notice that writing is near impossible before then, I will take the offer. Either way, I will not opt to go blind if i can help it, no matter my pride or weirdness about taking money from friends.
I know that many may not understand why I choose to do it this way, but I don’t really care about that. I know that I wouldn’t feel right if I didn’t try to wait it out or at least wait until the cost of it drops a little. Four thousand is A LOT! It’s simply the kind of person that I am. ^_^
Thanks for reading and have a great weekend everyone!
EDIT: I have decided that if cross-linking isn’t approved by Jan. 2015, I will take the kind offer of my friends and not wait it out any further. I don’t want to lose my eyesight completely, as writing is my entire life and joy! ^_^