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Thursday, November 17, 2011

Welcome Back, Dot

The red dot is back. Just like that.

I don't know if I am even going to post this, but I feel the need (something I haven't felt in a while) to just write as a way of sorting out my thoughts. After the first brain surgery, I felt searing pain inside my head if I thought too much. Two thoughts put together was too much, but I discovered a kind of peace in the process of writing. I would see my thoughts unfold on the computer screen, and as the words trickled out I would feel better. Just writing this paragraph is making me feel better.

So, the red dot in my right eye is back all of sudden. I've lost track of how long it has been, but it's been a few months since "central serous chorioretinopathy" has been on the tip of my tongue. In my last visit to the endocrinologist I almost forgot to mention it; that's how far out of my mind it is.

I did some soul-searching and some personal "homework" after the retinal specialist confronted me with the reality that I could lose part of my vision permanently if I didn't find the root cause of my anxiety. I did that, but now I wonder if the daily grind of real life has let me slip back to my old ways. In addition, I still have the low testosterone issue as yet unsolved, so that could be part of the mix. In any event, I'm not healthy and I don't feel healthy. But at least I'm working.

I still don't know if I'm going to post this, but it does feel good to write as I used to. I have a lot of readers now (most of whom I don't know) so it feels weirder and weirder to share deeply personal things.

It occurred to me just now there is an irony to the timing of the red dot's return. Let me explain. For the past month I have dealt with anxiety, certainly more than enough to bring the red dot back any given moment. In fact, part of me may have become emboldened by the notion I could "go back to normal living, anxiety and all" without my retina detaching anymore. For the past month, in addition to my duties with the orchestra, I have been filling my free moments with preparing a new edition of one of my old pieces. Another orchestra will be playing it in January and I decided I wanted to—once and for all—correct a few mistakes and create a definitive edition of something I wrote more than a decade ago. A lot of orchestras have played this particular piece, and—I suppose—over the years I have wanted more and more to distance myself from it. The older I get the less this piece seems like the real me. Plus, the old version has errors and more than a few of what I would call "orchestration mistakes," the kind students make. But my phone still rings with inquiries about it, so there is something in there people must want. To me, though, it's not perfect anymore. Every piece I write is perfect when I finish it, but over time I see the flaws in them surface like dead fish in a lake. I don't mind if my old pieces fall by the wayside; I would shrug and make an "oh, never mind" apology as they go away. I see too much fault in my own work and I want to start fresh with a new piece every time, at once excited about creating something new and also hoping everyone forgets about everything that came before. I don't have a website for people to peruse my past works because I can't bring myself to advertise past creations that are no longer perfect. If a publisher takes me on someday they can deal with that, but I can't bring myself to do it because it hurts too much. The only thing of mine I can conceive of having value is either my most recent composition or the one in my mind I have yet to write. I guess there is plenty of anxiety right there.

Yesterday evening the red dot rose dimly over my right eye roughly an hour after I received an email from my printing service confirming the new edition had been printed and shipped. How's that for timing? I had dealt with anxiety over the past month, reworking sometimes embarrassing youthful mistakes, and finishing the new edition on time was a relief. The work was done and I could relax. However, an hour later the optical illusion of the bloody circle took shape before my eyes, literally. And this morning it's still there. The ghost of flaws past, perhaps, arriving a few weeks late for Halloween.

I have decided to finish writing this before I call a doctor. I am, at this moment, just so sick of doctors and waiting rooms. I just want to get to a point where everything is balanced within me so I can go on living without thinking every moment about how this or that is going to upset my equilibrium. Do I double this hormone for the day because of some other factor? If I have a cold do I make another adjustment? It's all so interrelated with the human body. When I first emerged from the second brain surgery I was so determined to get everything right, physically and emotionally, to be a model patient, fully aware of my opportunities and my limits, living life as best as I could under the circumstances. The line of prescription bottles next to my sink stood like soldiers at attention every morning. If I didn't keep them perfectly timed and in line, dosing myself exactly as prescribed, I had no chance to make it back. So I did everything perfectly, always mindful of what my limits were, never doing something stupid enough it would set me back a few months. I always had the same goal in mind: return to the person I was five minutes before the anesthesiologist told me to breathe into the mask. Just work to get back to my old life.

Well, I now know you never get there. The rest of your life IS being a patient for the rest of your life. Take it or leave it. You can feel normal from time to time, but a big part of your life is pill bottles and waiting rooms. You never escape that, and if you shroud yourself with the fantasy that you can walk away and just "be normal" again you'll find out in a hurry what your life would be like without modern medicine. As always, I remain grateful for artificial hormone replacement therapy and doctors watching my every move, but it's starting to feel like being grateful for calcium in turnip greens when you don't like turnip greens.

There is a lot of pulling back and pushing forward in my life, I guess. Physically and medically I don't want to look forward to old age. I want to reach back to the person I was before, drinking from the fountain of youth and doing stupid things with little or no consequence. But emotionally and artistically I want to look forward, not back. I want to reach forward to things barely beyond my grasp, the music in my head like bunches of grapes at the fingertips of Tantalus.

I want to be the past.
I want to be the future.
In the present, I am neither.


  1. Ale,
    They told us it would be a roller coaster ride. I think we all just hoped that there would be a time we could get off the ride. I can feel and "understand" your frustration. I felt my heart drop as I read, not because it scared me... for you or for Lyndsay, but because I could only imagine what you (and she) feel like and there is very little we, on the outside, can do to "fix" it.

    Yes, it IS a roller coaster and maybe there is no OFF button; however, most days I can see a new Lyndsay...only just beginning to know and accept her new self. She misses old her too, and it sets us all back when some new symptom occurs, or an old one rears up. And yet, we carry on hoping the meds do their jobs as well as they can, and that one day, soon, we can look forward to changes in how this disease can be treated and managed. You both amaze me with how you deal with all you have had to deal with. You, Alexander Miller, are our hero... not JUST because you fight the same thing as Lyndsay, but because you are the voice that validates how it feels to be in this position. We need THAT more than anything else.

    Hang in there, Ale... some parts of roller coaster rides are wonderful.


  2. I so wish this were not happening to you.

    I wish for you some way to find peace, deep in your core are remarkably courageous and I sense you as very strong, even with the sadness and distaste for the health issues and 'patient label' that you endure.

    Your spirit is powerful. I don't really believe there are 'reasons' things happen to us...somehow this is the hand you were dealt, and now you must play it out best as you can.

    I can only imagine how difficult it must be to keep fear at bay. Hang in there, friend. You inspire us all, like it or not.