Saturday, April 21, 2012
This is a story with me in it. I have written stories with this title before, but they were not really about me. This is different. This past January 5 or so, I woke up to a Technicolor fireworks display going off in my left eye. “Surely, this is my imagination and it will stop soon.” But it did not. By the end of the day, it was obvious, even to me, that something was wrong with this spectacular event being broadcast in living color in my eye. I called E/S and we found an ophthalmologist who was willing to see me the next morning, first thing. When I got to see the Doctor, he examined me with little interest in my weird story of flashing lights but continued to search for a cause. He carefully explained the “floaters” were common for people my age. At one point, he finally realized I would not relent and gave me a test that showed significant damage to the peripheral vision in the left eye. He suggested an MRI, and off I went. After the MRI, I went home and waited. Later, he called and said in a chillingly calm voice that it appeared I had had a series of at least three strokes and should go to an emergency room immediately. JFTDC, I had an arbitration scheduled for the next week and was not pleased. I called E/S to ask if she would take me to the ER while trying to stay calm. I spent three days in the ER with some really great people making a serious effort at finding out what was wrong, keep me from going nutso and understanding that I had no insurance and very little money to pay the bill. I think they literally kept me in the ER because once released or assigned to a regular hospital bed the system’s obligation to care for me would shift to my ability to pay for service or suffer. In other words, they may have tacitly conspired with me to work the system for more that I could pay for. They surely saved my life as I know it. The tests revealed at least three stokes (CVA) had occurred. Anecdotal evidence indicates the first may have been in early November, then late December and finally early January. As far back as November, I was complaining profusely about my inability to focus on my work. I functioned adequately but not without a struggle. I thought I had just recently become lazier than usual and unfocused. I needed to constantly supervise myself to keep me on task. My daughter E/P picked Christmas day as one of the dates because she noticed I misspelled her name twice on her Christmas present. She was hurt and confused about why I would do that. Finally, when I awakened with color flashes that made it impossible to function, it was time to do something. Mercifully, the deleterious effects are minimal. I am getting used to the visual displays that are now only black and white ghost images. I am working on the lack of focus, but it sucks to have to motivate myself to do what I would otherwise do willingly. WORK is the thing I love to do. I have been unable to identify any deficit in memory, intellect or physical ability not already affected by age. I guess I am lucky, but I am so angry and scared I cannot decide whether to explode with rage or implode with fear. I could have died or worse. For me, infirmity is worse than death. We all die, but not all of us have to endure the indignity associated with lying helplessly in a bed waiting to die. It is my worst nightmare. I am very lucky I had E/S, E/P and my brother KJC, who immediately flew in from NC, all of whom figuratively held me up as I lay on a hospital gurney for three days waiting the results of the tests that would only confirm what we already knew. One of the neuros who physically examined me but not the test results had assured me I had not had a stroke, but he did not know what was wrong. The unknown is terrifying. It was a strange feeling to realize how mortal and dependent I could be as well as how afraid. Once, when E/S left for a while to take a break and a shower, I found myself without a hand to hold. When my daughter E/P grabbed my hand, all I could do was turn my head and cry. I don’t cry. Finally, the hospital doctors and nurses did all they could do and they let me break out of what seemed like a beneficent prison. Now, I had to face up to an even more scary future. JFTDC, I hated what was happening to me. I had lost control of my life. The healthcare system was now in charge. I either do as I am told or make plans for the funeral. But for E/S I would probably be dead or worse. She takes care of the important things while I, through denial, try to work as if nothing happened. No matter how much I try, there is always the recollection of the fireworks and the fear something else may break loose and land in my brain making me a vegetable. She pays the bills without me having to deal with them and negotiates with the providers so I can make payments to keep me from stroking out from the rage caused by my inability to effectively ignore this. Between the efforts of E/S (my love) and D/E (my assistant) I never actually have to do anything but sign the checks and make sure there is money in the accounts so the checks do not bounce. Not everyone has this kind of cushion to insulate them from reality. Not everyone has someone who cares. E/S and E/P have shown me they love me just being there when they could have been too busy. KJC calls regularly to check on me. The medications that are keeping me from stroking out are very expensive even with diligent work to reduce the cost, and they are kicking my ass. All drugs have side effects. Getting the right cocktail that will do the job without making me really unpleasant is taking some work. The desire to live will require me to take them forever. This is a new experience for me. Many people have been Rx drug dependant for much of their lives. I was lucky until now. Just because I was spoiled with good health did not insulate me from reality when it finally found me. As it stands now, I go to sleep each night with the positive attitude that I will awaken to find more healing but with the insane fear that there may be more damage and inevitable infirmity. I am lucky. I try not to think about those who are not so lucky, but I do. It could be me. And Oh yes, Have a nice day.