(I really wanted to call this post "Optic Neuritis: Into Darkness" but Star Trek stole my title. Oh well.)
Much of this is very personal, but I've realized over the last few weeks that hard times are wasted if we don't make them into learning opportunities, and the things we learn are wasted to some extent if we don't share our knowledge. Hopefully I will learn something through this experience that will help me or someone else in the future.
On Wednesday, April 10, as I was driving down the road I remember noticing a slight pain in my left eye and thinking that if it didn't go away in a couple weeks I should probably see an eye doctor. I think maybe I had felt it for a couple of days by then and was just realizing that it wasn't going away, but I'm not sure. Pain is really too strong of a word. It was more like a very slightly uncomfortable feeling when I looked too far to the side. I also had a feeling that my eyes were seeing two different things but I kept closing one eye then the other and I couldn't tell a difference. I figured it was a sign of aging eyes and didn't worry too much about it.
By Friday the sense of seeing two different things was stronger but I still couldn't tell the difference between my eyes. On Saturday I was walking across the lawn, covering first one eye then the other, again looking for the difference. This time I saw a small shadow in my vision with my left eye, just a small darker spot to the left of my center of vision. Funny how medical problems always happen on weekends! I called the doctor and together we decided it didn't warrant an expensive trip to the ER and I was told to call the ophthalmologist first thing Monday morning and make an appointment.
Sunday my vision was worse, the shadowy spot was bigger and looked like an area of fog on the left side of my vision. On Monday there was a thick oblong fog reaching from the left almost to the center of my vision and another thinner fog reaching in from the right. I saw the ophthalmologist that morning. First I went through a regular vision test. I could read the eye chart easily with my right eye. Then as I looked at it with my left eye I started to cry. I couldn't even see the left half of the chart. It wasn't that I couldn't make out the letters, it was as if they weren't even there, replaced by the thick grey fog. My eyes were dilated, more tests, and the doctor said my eyes were totally fine and healthy. She asked me to come back in a couple hours for a visual field test.
The visual field test was long and boring: stare at a dot of light in the middle of a screen and press a button whenever a light flashed somewhere on the screen. The results, my right eye was normal and my left eye didn't see anything within the thickest part of the oblong fog. I got a printout of the results, but I could have drawn the picture for the doctor and saved us all the trouble of the test. She gave me the diagnosis, optic neuritis, and asked if I was available to see a neurologist in an hour when he had an opening. My day was about to get worse.
I should add here that I'm so grateful for the wonderful health care I have. Pretty much all the doctors I could ever need are in one facility, all the records are digital, and all doctors have access to all my records and test results right on their monitor in the exam room. With different health insurance all the appointments and tests that I had on Monday could easily been spread out over a week or more.
I had an hour break to sit outside, get some fresh air, and google "optic neuritis". Thank you Wikipedia for telling me what the neurologist dreaded telling me, that ON is often the first indicator of MS. I took the news well, both from Wikipedia and from the neurologist (who was obviously unhappy that the ophthalmologist had left him to be the bearer of bad news). At least I had some answers to my questions and some expectation of what was to come. I was scheduled for steroid infusions for the next three days and an MRI. Surprisingly, I felt pretty calm about what was happening and was even a little curious about what was going to happen next.
Tuesday I drove myself to my first infusion appointment. The two fingers of fog had connected in the middle by then and while I could see through most of it, I decided after I got home that afternoon that it was probably wise to give up driving for awhile. I spent a couple hours in the chemotherapy area hooked up to my IV, surrounded by patients much sicker than me who all seemed to know the nurses and each other well. I felt a little guilty for being there, feeling perfectly healthy. The only immediate side effect of the treatment was a horrible taste in my mouth. That evening I bought a bunch of mints that became my constant companions for the next couple weeks.
The great thing about the steroids is that the slight discomfort I had felt was immediately gone, and I felt strong and healthy and full of energy. I had a hard time falling asleep that first night, not because I was worried but because I felt like I didn't need to sleep. I spent some time reflecting on the uncertainties ahead of me and the changes that could be coming in my life. I decided to list 100 things worse than MS. I didn't actually write them down but it was pretty easy to think of categories of things that would be worse: things that could happen to my kids, things that could happen to my husband, things that could happen to other people I love, natural disasters, terminal illnesses, financial struggles... I can't even remember all the categories I came up with, but it's not too hard to think of 10 - 20 things for each category. How bad can life be when you can think of at least 100 ways it could be worse?
I won't drag out the suspense any more. My MRI came back negative for MS. The MRI itself was kind of interesting. I didn't feel at all claustrophobic and the lights and sounds made me feel like I had been abducted by aliens. I amused myself for 45 minutes by imagining I was starring in a sci-fi movie and I tried to figure out what the plot would be. It took two days to get the results but the doctor let me know by email that I was fine, then we met with him later that afternoon and he told me I'm too old to get MS if I don't already have brain lesions so I don't have to worry about that at all. I guess there are advantages to getting older. The cause of my optic neuritis is unknown but harmless. By this point I thought the worst of my ordeal was over. I was wrong.
After the IV steroid treatment I had to take oral steroids, gradually reducing the dose until I was totally off them after 10 days. A couple days after each time the dose was lowered I felt such crushing discouragement and depression that I wanted to curl up in a ball and never leave my bed. I was frustrated with my partial vision, I couldn't do the things I wanted to do, and I felt totally useless and worthless. It took almost a week after my last dose for that to wear off. And after all that, the steroids didn't restore my vision.
Once I started feeling more like myself again I could start reflecting on the things I'm learning from this. The most important thing I've learned is what a wonderful husband I have. He has been so helpful and has shown huge amounts of concern and patience. I'm so glad I haven't had to go through this alone.
I'm now on week 7 of vision impairment. At the worst point (about weeks 2 - 4) the vision in my left eye was almost totally obscured by a dark gray fog. I could see vague outlines of shapes but not much else. It really was very much like being in fog at night with near-zero visibility. You might think it wouldn't be that bad since I still have vision in my right eye, but it's been much more inconvenient that I would have thought. It's very disorienting to see different things with each eye. Covering my left eye doesn't completely help because I still see swirling fog in that eye. I have no depth perception up close - it's hard to serve food, eat, and put a cap on a pen. Doing pretty much anything in the kitchen is somewhere between inconvenient and downright dangerous for me. I get eyestrain headaches a lot, and I wear sunglasses most of the time to cut down on the contrast between my two eyes. Sometimes the weird vision gives me a sense similar to motion sickness.
Two weeks ago I saw the neurologist again. He didn't seem worried that my vision wasn't coming back yet and told me to check in with him by email in a month, about the same time I go in for another eye exam. I did notice the day of the doctor appointment that I had a very slight bit of color vision on my far left side. So far left that something had to be almost behind me. Not much to work with, but at least it was an improvement. A few days after that I had a sudden breakthrough. Instead of dark gray, the fog suddenly became light gray - like driving through fog with bright headlights. I could see contrasts between light and dark, I could see shadows, and I could tell by looking at a lightbulb whether it was on or off. It was a great improvement, but since my eyes had gotten used to the dark fog, the change made it so I could actually see less with both eyes together and the headaches were worse.
I'm finally getting used to the lighter fog. It still covers my entire left eye but I think it's getting thinner. I can't see bright white. The lightest color I get is light gray. However, I can see more details and I am getting more color vision around the outside. Looking straight ahead I can't distinguish any colors but not too far from center I can see a little color. I can't distinguish between yellow and orange, but I can tell the difference between yellow and blue. Yesterday I was able to read (barely) the clock on my nightstand. I'm hopeful that I'll be able to drive again in a few weeks. I don't know how much of my vision will come back and how much of the nerve damage is permanent, but it's pretty typical that when everything is healed I won't even notice a difference between my eyes. I also don't know when this will heal. I think the normal range is 6 - 12 weeks but it could take up to a year. As long as I keep noticing slight improvements I'm hopefll.
This has really been a great learning experience. #1 lesson learned, as I mentioned before, is how incredibly wonderful my husband is. Not that I didn't already know that, but sometimes you just have to be reminded. I also learned that I can do hard things. I still think about my "100 things worse than" list and I realize I'll probably have to face some of those things at some point in my life, but if I do I'll still be able to find 100 things worse. The good things in life will always outnumber the bad, and no matter how bad it gets there could always be something worse (probably even 100 things). This has also made me realize what things are important to me. I can't do everything I could do two months ago and some things take much longer and are harder to do. I've had to prioritize and decide what's worth the effort and what isn't. I've also taken a harder look at my "someday I'll..." list. None of us has an unlimited amount of somedays. Why not today?
I can't say this has been a totally fun experience and I'm glad I'm having it. I still feel sorry for myself sometimes and get angry and frustrated, but those negative feelings are getting less frequent. Maybe after this is over I'll realize it was all worth it, but I won't know that until it's over. In the meantime I'll practice my patience and keep trying to look on the bright side (which for now is my right side!).
To be continued... when something changes...