Facing My Fears: Coping with a Serious Eye Disease

In 2003, I had food poisoning. Not embarrassing and miserable 24 hours food poisoning. It was I'm-lying-on-the-floor-and-passing-out-and-can't-reach-the-phone-to-call-911 food poisoning.

Paralytic ileus: it changed everything. Before, I could face health problems and tough it out. Since then, I've become a chicken.

I did survive that night... but it was only the beginning of a long, terrifying period. I couldn't eat. I got queasy, always feeling about to throw up. When I did eat, the pain was indescribable. For weeks. Doctors guessed this or that cause, but no one knew what was wrong; I was diagnosed with everything from Crohn's Disease gallstones to pancreatic cancer as they flailed for an answer. I fasted, went to a clear liquid diet. Effective, I must say-- lost 30 pounds that first month.

Finally, a GI specialist figured out that I'd gotten a nasty vibrio neurotoxin that had paralyzed a lot of the smooth muscles in my intestines. So the food wouldn't move through anymore. It would take a few months for the damage to heal.

My mother had to take me back to live in my parents' house a few states away, because I grew too weak to care for myself. I live alone.

I spent two months lying in a guest bed, too nauseous to sleep for days at a time, too tired to really be awake. A laptop and The Lord of the Rings DVDs kept me going. Sometimes I'd watch the iTunes visualizer with Enya going long enough to hypnotize myself out of my body for a short while, until the nausea got too strong. There were a few weeks during which I never managed to drop off to sleep for more than twenty to thirty minutes before nausea and pain woke me. And I was barely strong enough to reach the bathroom on my own.

My cat stayed with me the whole time... she seemed to know something was wrong.

It took a year or so to recover from that.

Ever since that illness, I've had a phobia of being sick. Deep down, I'm afraid I'll wind up in bed for weeks, helpless to care for myself, unable to sleep from the nausea and pain. And that makes the nausea return.

It's not rational. But fear is not rational.

From last fall through February, I was fighting a sinus infection off and on that at times had me pretty incapacitated. (I sometimes wonder if my wrecked GI may affect my immune system. I never got sick this often before). I finally, finally, finally fought it off with neti pot treatments and antibiotics and some pretty powerful medications and herbal remedies and a lot of rest.

I had about a week of being healthy when I started coming down with an eye infection. At first, I just thought -- oh well, allergies. But it kept getting worse, and worse. I went to my doctor twice. A good doctor, but she basically gave me eye drops and told me to tough it out.

I did until my eye was blood red. I haven't been able to read or see much out of it in a month. I went to a real eye doctor, scared. She was concerned -- my cornea had "infiltrates" on it, meaning my vision might be permanently damaged. But she put me on a serious regimen of medications and said we'd fight it, but we had to keep it out of my other eye. It was a virus, a nasty one. She guessed my immune system was still weak from the sinus infection.

So I've been trying so hard. For a week it got better, and looked better, although I still couldn't really see out of it. Down to one eye -- do you know what that's like, when you're a graphics designer and a writer? It's a good thing I don't read Greek anymore. I couldn't see the letters and accents; they're too small.

But now it's getting worse again, hour by hour, day by day. And it's going into my right eye. And I'm struggling to read even as I boost the font size to 18 point. I have an appointment with my eye doctor tomorrow, but after all the years of coping with arthritis, I've trained myself not to hope for much help...there are some things medicine can't yet fix.

I am terrified. What the heck am I doing writing this, when it might be my last night being able to read and write?

What would you do, if your vision was going, and there was a chance you might not get it back?

What do people do who have cancer? Who have terminal illnesses? How do they go on?

What do people do who are going blind?

I don't know. And of course, this could heal -- probably I'm just a big scaredy cat to be so afraid.

But in my mind, I'm lying on the floor in a hot and cold sweat, unable to get up to reach the toilet or the phone to call for help.

My body is controlling me again. And burying myself in web design and other things where I have some control is only an option until the vision goes snowy and dim.

I'm alone. I'm afraid. And the nausea won't let me sleep.

Any advice out there?

Thank you all so very much.
Thank you each and every one of you, for your kind words.

I don't really have the right words to express my appreciation, but I was asking for support, and y'all gave so much support!

The verdict is that my right eye is NOT infected, and the left eye's infection is nearly gone -- it's just taking a long time to heal. [UPDATE Friday 4/17: or maybe not. Doctor just called me back in to check again, and the left eye's condition is deteriorating. She's guessing maybe it's a different virus from what she first thought. Meh.] And maybe my right eye is tired, or maybe it's blepharitis, but I'm not in danger of losing it.

I can hang on. It's still horribly aggravating, since my right eye keeps blurring out too -- the stress and who knows what is stealing my sight away - -but that's temporary.

I'm still scared and frustrated about the left eye... it happened so fast, losing all my vision on one side, and I keep wanting it back -- but I can handle it, as long as it's just the one side.

And there's a chance it may heal.

I'll do what I can to treat it, keep fighting it. Pray in my own way.

About the picture: It's Lulu from Final Fantasy X, my favorite character from my favorite video game. She's crankly, smart, strong-willed, a lot prettier than I am... and has always fascinated me, because as far as I can tell she's only got one working eye! (Which, if you know the game, is the mirror of Auron's missing eye... hmmm.) I've always identified with her, a very Mother Bear sort of personality. I will use her for inspiration, as she's had her own share of hard knocks.

And thank you again.

(Below is what I'm seeing now, when the right eye is working. It fuzzes out intermittently, and then it's pretty much like the left side. That's what it was doing the night I got scared. At its best, it's still not clear. As you can see, I'm not blind, but I'm just at the edge of being able to read, write and do computer graphics, which are the three skills I have!)

[4.17.09 Friday evening] It's so easy to say "keep fighting it."

Just discovered the eye drops that my doctor's pharmacy gave me two weeks ago is the EXACT SAME stuff she prescribed me today. It was their mistake the first time -- but that tells me that what she's guessing I have, and the treatment she wants to try now, has already failed. And it can't be what she thought to start with, because she thought I had an especially virulent form of pink eye. While my vision in that eye is shot, the redness is mostly gone. So, basically, we're back to square one: all her guesses are wrong, and there's no telling what's causing this.

Just had another freak-out. Of course, it WOULD be 6PM Friday-- no way to do anything for a few days.

I tried vitamin B12 like granny suggested and I've started taking vitamin C and echinacea. If my immune system's weak, maybe I can help nurse it like you would for a cold.

I left a message with my good GP (not the same as this eye doctor) and she's going to refer me to a new eye doctor.

But waiting is horrible. I just want to know WHAT this is, how bad it's going to get, and what I can do to save my remaining eye.

And if I think of something I can ask you guys, I will. Thank you. There's not much to be done except pray, and while I am not the same religion as most of you, believe me when I say that prayers are gratefully accepted! For as I told Jimmie, one thing I'm sure about -- I believe in love.

I didn't realize why I was so in love with kites until I wrote those words at about age 20, while composing a very odd short story about a woman, a wheelchair, and a kite. Kites can't do much for fading vision, but I can vouch that they can be great therapy for a kid with fatigue and stiff joints.

This design was the second I ever learned, and although I generally fly commercial kites now, it's still one of my favorites.

Basic Kitemaking: How to Build a Pyramid Kite It's a bird! It's a plane! It's a... flying pyramid? Alexander Graham Bell is famous as the inventor of the telephone, but few folks realize he invented an early form of airplane! Well, not quite. It wasn't a plane -- a flat wing -- but a tetrahedro...

[4.20.09] On days when I think my right eye is safe, I'm happy and productive. I feel like a baby for whining, because I think, "Good grief, you're fine... you can still see." But that's not facing the unthinkable. That's facing something that's inconvenient.

Last night the right eye started getting red, itchy, and weepy. It's a little blurry today, though 18 point Trebuchet lets me read and write. That's how this all started a little over a month ago with the left eye. An infection. Never dreamed it would get this bad and take all vision away on one side. So here I am faced, again, with the possibility of it getting the right eye too.

I'm a little calmer. I think maybe it won't happen. Maybe I'll be able to fight it off. Maybe the specialist I'm going to see tomorrow with his $200 fee just to get in the door will have better ideas than the doctor I'm seeing now. Maybe.

But if not?

I still am no closer to an answer. Right now I'm crying but not scared beyond reason. If that right eye goes -- if I lose vision on both sides -- I don't know how I'm going to cope. I just have to pray I don't. And I still don't understand how people who have been blinded, or are facing something terminal, can keep going. I know they do, and I admire them so much for it...but I'm afraid I'm not that strong.

[4.21.09] I got a referral to a good cornea specialist. I was hopeful as soon as I saw his name, Lawrence Chao -- he was an excellent eye doctor I had over a decade ago before he left to open his own practice.

Dr. Chao recognized me in the waiting room, came over to shake my hand, and immediately made me feel better.

Once I got in to see him, he took one look at my eye through the machine and said, "Holy cow." He recognized the problem. It was herpes simplex -- and I'd really like to remember the green Orion girl who was apparently doing something naughty to my eyes when I wasn't paying attention! But Dr. Chao says that virus is everywhere.

It's going to take two months or more of constant eye drops, a couple medications and constant OTC artificial tears, but he says it will heal. Right now, he says, my cornea looks like it was "beaten with a chain."

It feels like a whole rack of false eyelashes dipped in sunscreen stuck to my eye. It's dry and scratchy and totally blurred out. The other eye is irritated from plain old Blepharitis, which explains the intermittent blurriness and itching.

But that's fine. As long as I know what it is, and that it's curable, I can handle it -- although I may whinge a bit from time to time. And I can have friends over and celebrate a birthday I missed while under quarantine! I've been mostly housebound to keep from infecting anybody else.

Which means I have no answer to the question I posed when I started this lens -- exactly a week ago, come to think of it, when I thought I was going blind in both eyes and feared there was no cure.

How do you face the unthinkable? How do brave people deal with losing eyes or hands or being paralyzed? Or knowing they've got something awful, incurable?

I don't know. My track record so far suggests I'm a big chicken!

I want to salute Kelli, a brave graphic artist who wrote me to give me support, who is blind in one eye and has very limited vision in the other. What an amazing person. Kelli, I admire you, and I don't think I could handle what you're handling.

Then again, I guess we never know how we'll perform, until we're in the Kobyashi Maru.

[Much later scene in Star Trek II]

Saavik: "Sir, may I ask you a question?"
Kirk: "What's on your mind, Lieutenant?"
Saavik: "The Kobayashi Maru, sir."
Kirk: "Are you asking me if we're playing out that scenario now?"
Saavik: "On the test, sir. Will you tell me what you did? I would really like to know."
McCoy: "Lieutenant, you are looking at the only Starfleet cadet who ever beat the no-win scenario."
Saavik: "How?"
Kirk: "I reprogrammed the simulation so it was possible to rescue the ship."
Saavik: "What?"
David: "He cheated."
Kirk: "I changed the conditions of the test. Got a commendation for original thinking. I don't like to lose."

At the end of that movie, Spock dies, and Kirk finally has to face the Kobayashi Maru. I still haven't.

So, how's that eye doing?

It has become a manageable problem now, like my arthritis. It has regained vision to 20-40, although there is scarring. A miracle, Dr. Chao says, because he honestly feared (although he did not tell me) that it was damaged beyond repair and would require a transplant.

I want to thank everyone for their prayers, kind words, and warm wishes when I was scared and irrational about this.

I am so lucky. I did NOT go blind. Some people in situations like this are not so lucky, and I have so much respect for you all who endure things that seriously impact quality of life.

The ulcers in my eye are gone. It's still itchy and uncomfortable. I have to treat it with special drops each day. A hat and dark glasses are now a must. But these are things one can live with.

Again, thank you, everyone. The world is a nasty place, but you all prove there are plenty of good people in it.

I am again moved reading all the supportive comments here. YOU are the heroes.

My health has been better this last year. After another fall/winter of nearly continual sinus infections, I had sinus surgery in February, and that's made an enormous difference. I've also gotten better at facing ordinary illnesses without terror and nausea eating my mind.

My eye infection is incurable, but usually dormant. Flare-ups are caused by stress and sun, so I've had to take steps to shield myself from both.

[Professional photo © photographer Jon Williams, whose airbrushing skills work miracles.]

My vision is still dodgy. I use free voice software to read aloud to me when the eyes go fuzzy, or I just crank up to 20 point type.

In short, I'm coping. I've got health issues I have to manage carefully, but I'm managing.

And I'm so very, very thankful for all the support.

I was lucky. Not everyone has the support they need.

And I know many people have faced far worse than i did.

I am not as brave as the people of Haiti, as 30 Chilean miners, as millions of brave souls who don't make news headlines and endure the unthinkable every day.

They did it. They're doing it.

Although it can be very hard, and there are times when you are absolutely shaking or just plain numb with fear or despair... we can make it too.