It seems that just when one settles in, life changes. The first thing that happened, at the end of a beautiful summer in Holland, was that my partner learned that a seemingly innocuous bump on the side of his head was in fact a tumor. Surgery was scheduled, and five weeks of daily radiation treatments to follow. He was fine, and then suddenly not.
I did my best to be helpful, to try and take care of him. He's strong of mind, and very matter-of-fact about everything. That seems to be typically Dutch, and a frame of mind I am unable to achieve. I'm watching his physical condition deteriorate now as the effects of the radiation become stronger and stronger.
I finished a year of schooling in the meantime, and took the last three tests in the inburgeringsexamen (integration exam). I haven't heard yet if I passed, but with everything else going on I hardly have time to worry about the results. If I didn't pass, I'll simply return to school and try again.
The reason I decided to write this entry today, though, was because of another change. A lot of my friends and my family know that I have been going to a series of doctors/specialists for my vision problems. I had my final appointment yesterday, and the results of all sorts of tests. I couldn't bear writing each person who asked about that outcome, so I decided to share it here.
About a year ago, the same time I began school, I noticed a change for the worse in my vision. I also started experiencing constant headaches, most often on the right side of my head where my skull was damaged in a motorcycle accident. I was pushing myself really hard in school, as I not only wanted to do well, but I must work twice as hard as a "regular" person to get around my brain injury. I can still learn, but it takes all sorts of tricks to try and keep the new information in, at least long enough to take the exam.
I knew my eyeglass prescription was wrong, and suspected that might be causing the headaches, but the damage to my vision is so complicated I couldn't simply get new glasses. Yesterday I learned that my vision has deteriorated further, even between my first eye appointment and the last specialist. I was also told that the problem is not in my eyes. Eye surgery, glasses, even special lenses and treatments will not work. They believe it is likely that the problem is in my brain.
I was waiting for so long, hoping that something could be done. Now I'm back at square one. My vision is slipping away, and I don't know why. My world has been reduced to a measurement - forty centimeters - beyond which only lights and darks, hazy shapes and blurry figures exist. I have dealt with that in the past, when I had more vision, by taking photographs of the world around me. The camera could see the details live and in focus, and I could review the photos later to learn about where I had been.
I saved money with the goal of buying a professional digital camera. Now, I don't know what to do, or how long I have left to be able to see. I wanted to try portrait photography, to be able to finally see the details of the faces around me. A better choice at the moment would be macro photography, especially since my forty centimeters of visual clarity is continuing to degrade.
I feel guilty. Maybe this is my fault; I pushed myself too hard in school. Could I have caused my own brain to start failing? I've never accepted that there were boundaries on what was possible, what I could do after I became disabled. But maybe there are. Maybe I have found a limitation that cannot be crossed, cannot be overcome.
I had so many plans for what I wanted to do in the future, once school was done. There are so many places I haven't seen, so many new hobbies I wanted to learn. I'm in the middle of writing a screenplay, and I will need to finish that before I start on other things. I'm just hoping that there will be time enough. At the current rate, my body will outlast what's left of my sight, and I find that to be terrifying.
I got a second chance at life when I was twenty. I was dead for a short while during my motorcycle accident, and I got to come back. It's not always easy - that's the same for everyone. I try to remember how grateful I am, how privileged I am to be alive. Today, though, and perhaps for a while longer I am going to be sad. I have to be strong for other people, and when I'm alone I comfort myself. It's lonely, but better than repeating myself endlessly in a zillion emails to concerned friends and family.
The constant pain in my head and a long-ongoing problem in my lower back have their own limitations to add to the mix. I'm so tired. Tired of always trying to keep a positive outlook, always trying to invent new ways to overcome and do more with my life. I've always wanted to live up to my potential. For those of you who know me well, you know I'm a fighter, a survivor. I'll pick myself up, and get on with living, doing the best that I can do with whatever is left of me. Just not today, not right now. Please have patience as I redesign my life; my dreams and goals.