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13.6.10

To Blindly Go...

It was 4:30pm, on April 1st, 2009, at the tender age of 47 that I went stark blind.

I had just finished a class on the ground floor and was climbing the flight of stairs to go to the teacher's lounge. By the time I reached the top, I felt completely drained and a cold sweat had broken out on my forehead. My body felt disconnected. It was not unlike the onset of a severe case of the flu. When I reached the room, I laid down in the corner to get a minute's rest before the next class. I closed my eyes for five minutes, and that was the last time I saw anything clearly.

When I opened my eyes, everything looked overexposed. I could see some detail in the room, but outside the windows was a bright, gray fog with little or no detail.

I went home by taxi with an escort from the school. By 8pm, I was profoundly blind. the world was completely black with on curious artifact: light sources appeared blacker than black, and LCD and CRT monitors looked like dimly glowing purple rectangles hovering in space.

That night, I ate a hamburger and cola with some friends, which later that night I tossed all over the bedroom. I didn't feel sick, per se, but nothing seemed to stay down.

The next morning, I was at the emergency room. I received a general check-up and they took blood. A complete list of everything I had eaten and drunk for the past week was assembled. Cursory tests showed I was, indeed, blind. I could follow a flashlight, because as a light source, it appeared blacker than black. I could also detect very high contrast objects, such as a person, moving in front of a brightly lit background. No details and definition, I could just tell there was something moving in the foreground. The bloodtest showed a slightly elevated level of uric acid, but was otherwise unremarkable. My blood pressure was abnormally low, but not dangerously so.

My friends conferred and decided I needed to go to a specialized clinic, so it was on to Mata Nusantara. There were more tests, more blood. Direct imaging revealed that the core of the optic nerve was pale, as if the blood supply had been shut down. There was a point of contention: MS didn't usually attack both eyes at the same time, and methyl alcohol poisoning usually involved coma. Furthermore, it had been several days since I had drunk any alcohol, so that seemed unlikely.

On to AINI. AINI is considered the foremost eye center in Indonesia. Most tests and more consultation, with more history given. The doctor made a determination that it was MS and ordered the standard initial intervention: heavy doses of anabolic steroids. I was checked into a ward and prepped for IV. Shortly after, I began five days of high-dose steroids. My legs burned like fire and there didn't seem to be any immediate relief. I lay there, unable to read, watch TV or do anything to while away the hours, except think.

I thought about being blind for the rest of my life. I thought about having to go home. I thought about living in a foreign country with a profound handicap. I thought about the loss of my career, which was centered on my ability to see. I thought about my daughter and whether she faced the same fate due to genetics. I thought about all the things I would never see again.

I thanked God that I often stopped to smell the roses. I always enjoyed a good sun rise and sunset. I spent a lot of time just looking at things and absorbing them. I always tried to stop and enjoy a beautiful sight, a work of art, a pleasing face. i didn't regret not doing that before I lost my sight, but I regretted that I wouldn't enjoy it again.

I pictured myself padding around my mother's house for the rest of my life, needing a stick to guide me. I imagined measuring off the path to the nearest watering hole where I could pass my remaining life listening to the world go by. I tried to list all the things I could do with no sight. That one sense had been my source of income for my entire life, and now I would have to retool and rethink everything.

I was dismissed from AINI after five days and given a strict regimine of steroid pills to take several times a day. My friends brought me home to my apartment and i settled in for the long haul. It was April and my apartment was paid through December, so no worries there. The sole question was, what to do. For entertainment, I listened to movies. 'Iron Man' and 'Get Smart' became my companions, since I had already watched them several times and knew the pictures that went with the story. I sat on the sofa and started thinking...hard. What now?

On day ten, I opened my eyes and was startled. There, at the very corner of my left eye, was light. More than that, there was information. I could actually see something. it wasn't much, but a match is a miracle in the dark! Over the next two weeks, it was exciting to wake up! Every day brought with it new sight. More and more of my eyes were clearing. After two weeks, I could actually go out on the balcony and see houses and cars and trees. No color, mind you, but my peripheral vision was returning. Slowly the darkness cleared, beginning at the outside and moving inwards. There was a sharp demarcation across my vision between light and dark. It was enough that I could leave the apartment and go down to the shops, or sit by the pool or just do anything but sit and think.

By the end of April, I could see pretty well...maybe 70% of normal. I couldn't watch TV, but I could use a computer. Something about the frequency of light from a CRT and an LCD allows me to see one, but not the other. My central vision was sharp, but black-and-white. My peripheral vision had some color. I could see the color blue quite well and even vividly, red a good bit less, and brown, green and yellow were gone. The inside half of my right eye was still black, but I could see well enough to get around independently. I couldn't really cook, though. I couldn't see the color or quality of the food, so I burned everything or ran the risk of eating bad vegetables.

By this time, I had gone to The Jakarta Eye Clinic. I was referred for a CT scan, which came back with a small white area on the occipital lobe. There was speculation that it was a brain tumor; a neural fibroma. I was then referred for a 64-slice MRI of my entire head. The results showed that the white area was an artifect in the film, and not a cancer. I breathed again. But, there was no other obvious reason for my blindness: no stoke, no hemorrhage, nothing. By now the diagnosis was closing in on MS, though there was one more test to be sure, because MS rarely affects both eyes at the same time. I had stopped the steroids and my sight had settled around 60% of original. Though I could read a standard eye chart down to the smallest detail, the area of my vision that was clear was very small, and there was still no color in my central vision.

The last test was another MRI. This time, it was a high-resolution scan from the base of my nose to the center of my forehead, covering the eyes, nerves and occipital region of my brain. It was conclusive. There were small legions on the optic nerves characteristic of MS. It seems that MS is an auto-immune malfunction that attacks the protective sheath around nerves. The senses are particularly susceptible, because they are the most delicate. Turns out I had signs for many years. My hearing problems were most likely a symptom, as well, and not just damage from years of being a rock and roll stagehand, or working in a scene shop without hearing protection. Various aches and pains could also be attributed to early symptoms. Would it have made anu difference if I had known earlier? Probably not.

I was given the option of beginning courses of various pills (ah, western medicine). All came with onerous side-effects, life-long use and no guarantees.

"No thanks."

I have since been using a strict vitamin and mineral regimen, used acupuncture and maintained a healthy, well-rounded diet. The results have been mixed. I can now perceive a wider range of colors, but the overall quality and resolution of my vision has degraded. Not a lot, but noticeable. I have a hard time seeing at night. What I see are yellowish-white lights floating in a sea of black with objects very close to me being at least partially visible.

I can't really see faces, at least not in passing. If I talk to someone, I can find their eyes, but I can't see the rest of their face, so I have to guess their mood and level of seriousness. I am frequently wrong. I can look at the mouth, but then it takes a second to find the eyes again. It is quite difficult to hold a conversation when you can't see someone's face. It is one reason I have always hated the telephone. Now, all of my interactions are like talking on the phone.

I have a very limited range of acuity. There are what amounts to small areas in my central vision where I can see sharply. At about a foot from my face, it is about three inches wide. In general, I see the world as if looking through amber colored glass, smeared with Vasoline while watching a noisy (pre-cable) TV station. I often get amazing geometric patterns of sharp color and shapes floating in my vision, as it looking at stained glass windows. They block my vision and I can't see anything beyond them. My vision changes daily, sometimes a little better, sometimes a little worse. I can read quite well if I use a blue LED light, which enhances the contrast of the text and paper. I have a very hard time discerning objects that have similar contrast values, and my sight is pretty much two-dimensional. Stairs scare the hell out of me, especially in a country where the rise and run of the treads can vary significantly on a single flight.

I have developed a strange walk where I don't put weight on the leading foot until I am sure where it is going. Several good spills, including falling in a ditch, taught me that. I have also developed a stoop. Being Indonesia, the general population here is a full head shorter than me, and overhead objects are lowered accordingly. I have whacked my forehead good and proper enough times to learn that lesson. When walking, especially at night, I often have to stop to assess the way in front of me, or in the alternative, pick someone in a crowd going the same way and shadow them. Even still, objects often surprise me as they materialize directly in front of me. Crossing a busy street is a nightmare. I have to listen carefully for motor sounds where the dopler pitch is rising and coming in my general direction. I can't see the objects until they are about five yards from me; too late in the case of fast moving traffic.

Among other effects, the center three toes on both feet have gone numb. It's more annoying than anything else. I get strange transient pains, not in the muscles, but deep in the nerves, that last for a time and then go away. All in all, things could be much worse, but there's plenty of room for improvement. I have eschewed western pill-pushers for more traditional approaches. Herbs and vitamins, massage, acupuncture, and other approaches are far less damaging and cheaper than pharma. There's a chance I may have more attacks, or there's a chance I may never have another.

In the meantime, I have learned Braille and the Braille typewriter. I have converted my computer to voice-activation and have gotten software that reads the screen to me. Though I don't yet need it, there is no time like the present to prepare. I refuse to be a victim and will maintain as much independence as I am safely able. It's really amazing how fast the body adjusts and makes accommodation for changes in function.

But, in the end, it is the love and support of friends and family that have kept me going, especially of a particular beautiful woman who has cared for me daily for the past year. For her, I am deeply thankful, for I would be truly lost without her.

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