Friday, November 25, 2011
I will always remember two Thanksgivings ago as the day I hit bottom. I suffered those extreme hot and cold flashes (burn and freeze flashes, more accurately). I experience “flashes” of hot and cold now, but it’s not the same thing. The debilitating severity of the ones following my second surgery made it impossible to do (or even think of) anything else. If I read a book, a moment lost in thought would send me into swings where—in the span of a few minutes—I would feel my bones freeze, then my body burn in an oven, then my bones freeze again, then my body burn in an oven again. For many days I did little else besides perch on the edge of the sofa and pray the combination of clothing I wore would keep my temperature stabilized. It felt like balancing on a basketball while wearing roller skates.
Back then I was alone with MJ and Noah as Thanksgiving came and went. MJ cooked up a large feast, filling the house with aromas from our childhoods, hoping it would spark some kind of healing in me. My kind of woman, I have to tell you, using food to motivate me like that. I get a brain tumor and MJ goes to the grocery store. It worked. But it took a long time to work. On that day, with the table full of glorious creations, I eased myself into a chair at our dining table and I couldn’t eat. It was that bad. It occurred to me then if I didn’t get any better I wouldn’t be able to go on.
This Thanksgiving it was just the three of us again as I nursed other ailments, the red dot in my vision chief among them. The hot and cold flashes are mostly gone. When they do come they can be remedied by an electric blanket or adjusting my sleeves. I worry about my right retina detaching and the elusive goals of hormone replacement therapy, but I can make even the worst days work. This year MJ made new things for our Thanksgiving dinner, perhaps mimicking my new world with new challenges. As I rested in the living room, doing a crossword with Noah by my side, unusual aromas wafted in from the kitchen. Garam masala, lemongrass, ginger, paprika. I heard spice grinders whirring and coriander seeds popping up from hot cast iron skillets. She had my attention. When I heard the crack of cardamom pods under the blunt end of a knife, Noah righted himself and went into the kitchen to investigate. MJ threw him stalks of chard and he chewed them apart enthusiastically.
Me? I wasn’t doing so well, even with our house reinvented as a spice market. I still couldn’t eat much once we sat down, but the curry-crusted turkey skin sure looked good. A new solution to an old problem, I thought. My mind wanted to eat—and it smelled so good—but my diabetes insipidus medication sometimes bars me from enjoying many things if the timing is wrong. Every eighteen hours my body begins a “breakthrough” (code for massive fluid loss) and I must let the breakthrough continue for about two hours so I can flush everything out. My legs deflate and the dents in my ankles (from my socks) diminish. Then I squirt medication in my nostril and an hour later my inner Trevi Fountain shuts down. To control this properly, I need the full three hours … every eighteen hours. Do the math and you find out half the time my breakthrough occurs in the middle of the night. (The other half I’m probably at a rehearsal.) Therefore, I cut corners much of the time and take the nasal spray early, before any stretch of time when I will not be able to get to a urinal and a water source every ten minutes (no exaggeration). If I don’t have a full breakthrough period every 18 hours, I gain weight quickly. My legs balloon up and I am more likely to get sick. Last January, I went five days without a breakthrough when I premiered my oboe quartet in Florida. A week later I was in the hospital with pneumonia. One didn’t directly cause the other, but clearly I am more susceptible to illness and infection when I don’t regulate my fluid loss and intake correctly.
This week I have been feeling under the weather and we are heading into Nutcracker season. I needed my full breakthrough in the middle of Thanksgiving day and the timing could not have been worse. The only thing I want during breakthrough is water or (maybe) a bite of fresh fruit. Salt? No way. Sugar? Sounds good but it messes with me later. As I smelled the garam masala on our Thanksgiving turkey, I was motivated once again by Nurse MJ. I wanted something I couldn’t have, and I had to find a way to make it work. Old problem, new solution. It's there somewhere, and I MUST. EAT. TURKEY. BUT. CAN'T. Find a way, Ale. Find a way. There must be a solution, and MJ knows I will spend the next year planning day and night until I can make the yellow turkey mine.
Sunday, November 20, 2011
Now I know why I love my friends so much. And why I blog about my ongoing issues publicly. I never know when the next moment of truth is going to dawn on me, but my friends provide it when I write honestly about my latest dilemma. I believe healing inside and out are two sides of the same coin, and this update of what I consider a “medical” issue is completely valid in this forum. Emotional health and physical health are intimately related, ideally combined as one, a cherished image of them sharing a symbiotic equipoise in the mind of a healthy soul. I have come to believe this so strongly. In the days after my first surgery, I blogged day and night about my earliest memories, searching for clues as to how I—as an adult—would reach back and reprioritize my memories (not change or delete, just reprioritize) in order to lead a healthier life. What scars us as children lays groundwork for how we make decisions as adults. Every major part of my life traces back to some early memory, often traumatic.
My first traumatic memory, for example, was that of helplessness. I saw a dog shot to death. It was struggling to get out of a ditch and a security guard filled it with bullets. I was two, and I stood right next to the gun as it emptied. I never spoke of this memory until recently and I never knew the dog was rabid. I grew up thinking the dog wanted me to help it, and I was powerless. To this day I feel anxiety over killing bugs; instead I take them outside if they are crawling the walls in our house. I coax them onto a tissue and I shake it off in the bushes. The other traumatic childhood memory is of guilt: my nanny died in childbirth after she decided she wanted a child just like me. That’s the way it was explained to me, and I grew up thinking I had killed someone who wanted to love me even more. These are very potent things to discuss openly, but they have been the main forces guiding how I live my life. That they are closer to the surface and not stuffed in a dark corner is a benefit to me. I’m less likely to beat myself up as I did growing up. I can—from the wisdom of middle age, at least—reason things out and tend to my scars in the daylight.
I received many thoughtful comments and emails on my latest blog. It surprised me. Often, with a blog, I think through it for days before crafting it and posting it. I’m usually proud of the pacing, the wit, the style, the grammar, etc., and (being honest) sometimes I am disappointed when I don’t get a lot of comments. For the last blog, however, I wrote like the sportswriter Red Smith: I sat at the typewriter and opened a vein. I received comments and private emails back that were almost essays, and I could fill a book with the wisdom communicated back to me. I have more work to do on my inside, my emotional health, and perhaps my low testosterone has knocked me down enough notches where it’s easier to take myself apart once again and reconsider some things. If I don’t sort this out my central serous chorioretinopathy will worsen. I could lose part of my vision permanently. It is that serious if I don’t sort this out now. My emotional health is a medical issue, so read on.
Perfect. Perfection. Someone I love very much pointed this out to me. How many times did I mention that word in my last blog? It wasn’t planned, and—I suppose—when I write without planning I wind up saying the darndest things. The belief we can achieve perfection is, as it was pointed out to me:
“A recipe for disaster....if we were perfect, or what we accomplished were perfect, we'd have no further reason to be alive as our work here is to do our best, which surely is striving towards fulfillment, not necessarily perfection. But if you're looking for the source of anxiety that is exacerbating the red dot, look no further.”
Agreed. As always, I try to think back to when ideas like that took hold. When I graduated high school and began my studies at Juilliard, my parents moved from our house to a new one they had built a few miles away. In every way I could see, they were “moving up” from a nice house to an even nicer one. My father’s career went into the next gear and—for the first time in my life—I sensed from my mother that she was not worried about everyone’s financial future. I was the youngest of her children and we were now out of the house at college and beyond. Empty nest. My mother had funds to play with and she bought art.
The most notable piece (to me, at least) was a 1960 untitled triptych by American painter Bob Thompson. I would stand before it often and study it, the bold colors and messy brush strokes burning brightly before my eyes. When my mother died in 2006 I asked to have this one. My mother sometimes stood next to me when I drank in the Bob Thompson adorning the dining room wall. As I study it now, in my own house, I imagine her next to me, so close I could hold her hand again. I remember the first time we discussed it.
“He died of a heroin overdose,” she said.
“True. He wasn’t even 30 years old. This is something new to you, Alexander.” Then she lectured me as if I were ten years old: “There are people who destroy themselves. But some leave behind art that is perfect.”
I have an excellent memory, and I can still hear that, word for word, ringing in my head. When I went back to New York to resume the semester at Juilliard, my teacher told me I wasn’t able to express the depth of a certain oboe etude because, in my life, I hadn’t “suffered enough.” Well, that sealed the deal.
I had suffered plenty—privately—by the time I was four with dog shootings and the guilt over my nanny’s death, and I had made my adolescence into a model of strength despite my unspoken traumas that didn’t fit with the rest of the nice things surrounding my life. Something contorted deeply inside me during the next few months, and it was the desire to manufacture a suffering that wasn’t really there. The innermost core of me suffered and knew pain, but I had mastered that for a while, so a second layer of false suffering—“virtual” suffering, perhaps, or a more public suffering—encased me for a while, and maybe it is still with me, intermixed with the rest of my “real” scars. I set “perfection” as the only acceptable goal from then on. Fail and I was worthless. Come in second place and I was worthless. The failure and the suffering might lead me to produce something perfect in the meantime, even if I destroyed myself in the process. It wasn’t about me, anyway. It was about what I left behind.
I’m not saying this added motivation hasn’t helped me in life; in fact, many of my accomplishments are as a result of this inner drive for perfection. I tend to be a lazy person otherwise, and without the self-loathing I might not have produced anything worthwhile. I just noticed the Wikipedia article about me is about the same length as the one about Bob Thompson. I wonder what my mother would think of that if she were still alive.
After considering this, I have to understand how this relates to my healing. It strikes me that my desire to be a “model” patient could have a dark side, too. “Model” is code for “perfect.” That relentless drive for perfection again, so catchy in advertisements yet potentially dangerous. Everyone praises my positive attitude despite my diagnosis, but I wonder if I am missing out on part of my healing by not “going with the flow” some more, going up and down on the roller-coaster and being more honest about the lows—brutally honest—about the bad days when, in the words of a friend, “you want to punch kittens.” As I learned through childhood, if you block out the lows too much (something I was good at) the highs aren’t as sweet. If you inure yourself to the swings you don’t hurt so much but you also miss the surprises. Another friend told me, “some parts of roller coaster rides are wonderful.” True. Maybe I forgot about that in my drive to be perfect.
Thursday, November 17, 2011
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.